tag:blogger.com,1999:blog-10837060913709063212023-11-16T02:59:52.532-08:00Houlding On - Letting GoDAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-1083706091370906321.post-48325033698343207582019-01-16T14:46:00.001-08:002019-01-18T09:17:26.735-08:00Looking Back and Looking AheadJust a few minutes before midnight that marked the beginning of 2019, I fell down a flight of stairs.<br />
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I felt embarrassed and like an aged Alice in Wonderland. I was a bit bruised, and a little shaken at first, but as I fell right to the edge of the dance floor, I was strangely calm. Maybe it's because I had been reading THE WIND UP BIRD CHRONICLES, which is full of signs and symbols that it seemed perfectly apt.<br />
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Alex and I had always LIKED Christmas, particularly after the kids were born - but we loved New Year's. Many people don't like to go out and celebrate, but we did. There were almost always fireworks at midnight (or close enough anyway) which are extra beautiful in cold and snowy weather - even if you are freezing. We marked the promise of the new year by eating great food, drinking champagne, and reminiscing. We always sang Auld Lang Syne and kissed at midnight. It was one of the very first holidays we celebrated together, and also sadly, the last - although Alex was so profoundly altered by then, it was a pretty sorry excuse for a party.<br />
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As I thought about New Years' Eve, I could not imagine anything I could do at home or with friends or with the kids that would not simply emphasize his absence. Trying to recreate what we once had would have been futile, and doing the "usual" celebration without him was unthinkable.<br />
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In 2018 we were challenged by a full cycle of holidays and special occasions remarkable to a large extent for what was missing. Alex's absence haunted every milestone we marked - and I know this is true for EVERYONE who has suffered a great loss (which turns out to be nearly everyone at one time or another). So there I was - at loose ends about whether/how to mark the end of a year that had brought us so much pain - and not wanting to be a pain myself as I grumped my way through the holiday.<br />
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And that's when my friend, Pattie invited me to a New Year's Eve party at her vineyard in Oregon. It took me all of about ten seconds to decide that was the single best thing I could do because I could make it contain all of the things that mattered (food, wine, change of scenery, lively conversation and fireworks) without the attachment to specific memories of Alex.<br />
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Even better, this would the first trip I have taken since 2012 that was NOT somehow focused on either Alex or my mother. For the first time, in a very long while, I experienced a sense of lightness and freedom. It ended up being one<span style="background-color: transparent; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> of the best New Year's Eves I have had in some time!</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
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In a few short days, I shared an airplane with Afro Man and got his autograph for Laura (look him up if you don't know who he is), went out for some wonderful dinners with my brother and his wife, went out to a movie, drove around beautiful countryside, met a bunch of interesting and funny new people of all ages, drank delicious wine, hiked around a park full of waterfalls and felt like an "insider" as Pattie and Mark showed me around Bjornson Vineyard.<br />
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And I also had lots of quiet time to myself in a beautiful room above the tasting floor. I was able to read and write and reflect and rest as much as I wanted/needed. And I had great company at every moment when I wanted company. I felt that I was meeting myself again for the first time in years.<br />
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I meditated on my own upstairs, looking out over Mt. Hood which literally glowed in the sunlight. <span style="background-color: transparent; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">As I thought back to how we handled Alex's illness, the objective was always to stay in the present and live as fully as possible - even in the last days/hours of his life on earth. </span> I asked myself if I could just allow myself to let go of Alex. Because without trying, and without being altogether aware of it, I have been hanging on to him so tightly all of this last year, that it has dulled my capacity for delight.<br />
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My intention then, for 2019 is to re-capture an appreciation for life and living - with all of the contradictions which I am sure will manifest over the course of coming months. And it's not to say that I am DONE with grief - I know it will continue to visit when it needs to.<br />
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But years ago, my friend Alanna, recommended a book on the Art of Possibility which contained some "rules" - of which my favorite was, "Stop taking yourself so f-ing seriously."<br />
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So here and I now, I declare that 2019 is the year to remember to PLAY. I have been working hard on so many fronts for so many years it really is time to let go and quit taking it all seriously.<br />
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My next adventure is set - at the end of March, I will head to Japan where I will walk a part of the Shikoku Island pilgrimage, eat massive quantities of sushi, admire the cherry blossoms, encounter the completely unexpected, and I am sure, get completely lost at various points.<br />
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But like Alice who had to fall upside down to find herself, I think that I will enjoy the journey.<br />
<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com1tag:blogger.com,1999:blog-1083706091370906321.post-65908480499437727472018-08-04T08:08:00.001-07:002018-08-04T08:08:26.609-07:00BlueberriesMost years, Alex and I would drive to a beautiful spot along the river in Wisconsin to pick blueberries. I can't exactly remember the first time we went, but it has been at least 30 years. It is an only an hour and a half from the city, but it is a completely different world, with its own pace and a kind of luxuriant spaciousness. There is room to breathe and think.<br />
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By the time we got home. we would always be refreshed and exhausted, and loaded down with purple berries - sometimes so many it was laughable.<br />
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Yesterday, I went alone for the first time. The route is so very familiar to me at this point - the historical monuments (not exactly overwhelming), the drive-in that sells broasted chicken, the frozen custard place where you can squish pennies as a souvenir, the dog food factory (that actually might smell a little bit like broasted chicken), the local campaign signs, the beautiful bluffs along the river, the eagles and hawks wheeling overhead, the neat farms, and the tiny towns with amazing lawn ornament collections.<br />
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Simple stuff - but a landscape of memories. The first time Alex and I went together, I was so enraptured, I suggested that we sell up, get a place on the river, live off the land, bake our own bread, and get away from it all. "You wouldn't last a week," said Alex - and it made me laugh out loud to remember that.<br />
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I remember the last trip we took together just before Colin was born, and how wistful I felt. That year we actually did stop at the historical monument, and we realized that once the baby was born, it would never be the same again - just the two of us. There was a tinge of nostalgia, and at the same time anticipation. It turned out to be a great year for berries. We enjoyed the jam for months after Colin was born. And it also turned out that although it never WAS the same, it was all so full and rich, it didn't matter.<br />
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The years bleed together - but I remember taking Colin and Laura as they grew old enough to go with us. The peacefulness of the place and slower pace that Alex and I relished contrasted with the crazy energy of two young kids made for wonderful trips. They were restless, for sure, but the payoff was frozen custard and squished pennies and blueberries. They would sit in the back seat with a giant box between them, and stuff their faces on the long drive home. Months later, we would find blueberries stuck in nooks and crannies in the back seat and have a good laugh remembering.<br />
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Last year, I picked Alex up and we took the trip together one last time. So much of what I could remember vividly was lost for him, so we couldn't reminisce together. But it was an absolutely perfect summer day - green and blue, full of sunlight and shadow. He drew pictures while I picked berries and worried about how he was doing. That was the day I learned how compromised his sense of balance had become, because he was unable to sit on a stool anymore. He was so very quiet, I assumed he was drawing, and when I looked over my shoulder, he was lying on his back with his feet in the air like an upturned beetle.<br />
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I got someone to help right him, we found him a chair, and he drew inappropriate art while I tried to make sure no small children approached to see what he was doing. It was both heartbreaking and wonderful at once. I was delighted to have him along, even in such a compromised way. What a day! At the end of it, there was frozen custard and enough berries to share with his friends at Breck. I knew it would be the last time I could take him, but it felt like a victory, not a defeat.<br />
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All of that, and a lot more besides went through my mind as I made the drive. There is a point at which there is no radio service, and that's when I switch to whatever CD I have loaded up in the car. As it happens, it was Schubert , and at the moment I turned off for the final drive up to the farm, Ian Bostridge was singing the very song that I chose for Alex's memorial - Du Bist die Ruh. In English, the opening stanza (which is somehow so much better in German) is:<br />
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You are rest, and gentle peace </div>
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You are longing, and what stills it </div>
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I consecrate to you, full of pleasure and pain, </div>
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As a dwelling here,</div>
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My eyes and heart. </div>
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I didn't plan it that way - but I am glad that's how it worked out. So I got a bit misty, and then I just got to work picking berries and taking it all in. </div>
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As I drove away with my boxful of blueberries, a beautiful flock of turkey vultures swooped onto the road, and I stopped to take their picture. I loved seeing them - just as much as I loved the lush green all around me, and the sticky berries, and the bald eagle perched on the tree by the side of the road. They had bright read heads and majestic wingspans and they were full of purpose.<br />
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On July 24th, my mother, Yvonne Kuzma, died peacefully in her sleep. She was going to be 87 in a little more than a month. It has been a rough year for her. She had been diagnosed with vascular dementia and late stage multiple myeloma, and we were dreading everything she was going to have to suffer in the days and months leading to her death, but we were putting all of our effort into making the time she had left as good as possible.</div>
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She completely surprised us by checking out right away rather than going through more of that. In the end, her frail body just couldn't take it any more - and although we are very sad that she is gone, we are also relieved that she will not have to live through further indignities and the inevitable waste and pain she would be facing. When I visited her in June, we were able to reminisce and laugh and enjoy each other's company like the good friends we have become. </div>
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I am kind of numb and kind of burned out but I am also simply weary of mourning. Life calls to me - sometimes I wondered if it ever would again after Alex died, but I can feel an energy waking up inside me. Realizing yet again how absolutely precarious all of our positions are, it feels more urgent that ever to savor this precious life. And besides - there is so much that needs DOING.</div>
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So today, I will bake a blueberry pie to honor my very practical mother, and to appreciate the bounty of late summer. I won't use her piecrust recipe, because, well, we loved each other very much, but let's just say I don't cook the way she did. And to her infinite credit, she would not be at all offended by that - simply curious and appreciative. Thanks for that, Mom! </div>
<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com3tag:blogger.com,1999:blog-1083706091370906321.post-21731129259029195302018-06-01T09:07:00.001-07:002018-06-01T09:07:32.116-07:00Breathing RoomTHIS IS A STORY I WROTE IN THE SUMMER OF 2016 and never published. It feels odd to be posting it now - but because I have some friends who are going through some seriously hard times, I thought I should post it in case it offers a little bit of help and encouragement to the caregivers out there.<br />
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And just like that, things change up a bit.<br />
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Last week, I took Alex to the home for a week of "respite" care (a term for something that should be easy to find; the reality is that looking for respite care is pretty much of another part-time project that caregivers get to add to their list).<br />
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Before we went, I spoke to the director, gave them a little summary of Alex's likes, dislikes, habits, and odd behaviors. I packed a suitcase for him, bagged up a week's worth of "medical" supplies, and dropped him off in time for lunch.<br />
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As I wrote the check, I cried and worried - and just like a mom who drops off a child at kindergarten, I determined not to go back to the dining room for one last good-bye hug, because I did not want to make the transition harder for any of us.<br />
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When we first talked about doing this, I thought 4-5 days would be the longest we could stand being away from Alex. I imagined that he would be anxious and confused and sad. I thought he would feel hurt and abandoned. But as our travel plans began taking shape, and I began to think about how to organize it all, we decided on a solid week.<br />
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After we dropped Alex off, we packed and headed off to the airport. While there, I got two text messages - one was a picture of Alex gently petting the resident dog, and the second was of him banging on a drum and singing "Oh What a Beautiful Morning," as part of the afternoon music session.<br />
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So here I am feeling selfish for leaving him behind - and coming the realization that perhaps there is a path ahead of us that will make both of us as happy as possible with the crummy climax of this disease.<br />
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Laura and I spent 5 glorious days on the west coast - visiting family, sitting in the sauna and hot tub, traveling to a vineyard and tasting wine and walking to a waterfall, and taking in all the sights and sounds along the coast at Manzanita. It flew by. And I WOULD tell you that I missed Alex terribly, but that would be a lie.<br />
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For the first time in more than 5 years, I was able to take a trip without worrying about him. As early as 2011, when we would travel together, I was having to do all of the organization, arranging, packing, money management, scheduling, and driving.<br />
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By 2012, trips with Alex became all about watchful worrying. He wandered onto a freeway all by himself in Boston in 2012 and got a free ride to the museum in a cop car. He came back to the wrong hotel (because they all looked alike) and expressed little or no emotion when visiting friend or family or attending special events. He wandered through a hallway naked in Switzerland. He nearly crashed a rental car several times in England. He worried that the Golden Gate Bridge would collapse from under him as we walked its length and could not look up once to see the Bay or the beautiful blue sky. He was plagued by incontinence on the road - whether his urine was normal or bright blue, would get lost in hotel workout rooms, would disappear into a public restroom for 45 minutes.<br />
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You get the picture - even though there were some beautiful moments in those trips, there were very few times when I could honestly say I "relaxed." As a caregiver for someone with this illness, you are always on a low-level of alert. And it can morph into full-blown panic in a heartbeat.<br />
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I like to think I can easily spot someone who is a caregiver. They have a certain worry about them - and yes, they laugh and smile and act just like anyone else on the outside, but they have a habit of always looking over their shoulders. They seriously do. Because they really cannot trust the person they are caring for to have any kind of judgement, and their loved ones are very very hard to predict. The surprises, by the way, are not usually a lot of fun - even if, like me, you think you are a pretty flexible person.<br />
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And Alex? Did he miss me? Nope. Was he worried? Who knows? If he was, I wasn't there to see it or experience it. He played with the house cat and dogs, he did his own peculiar version of yoga in the living room, he drew nude pictures of all the staff, and he took up "fake" smoking - even blowing smoke rings for the amusement of the entire staff, who absolutely fell in love with the man I was sick of seeing. When I finally DID retrieve him they said, "When you are ready to place him, if you even think of sending him anywhere but here, we will kidnap him and bring him back here."<br />
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AND - bonus. When I picked him up, I was actually happy to see him. It turns out, I HAD missed him. And for whatever reasons, the weeks that followed went more smoothly than any weeks had for quite a while.<br />
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Caretakers DO need to take care of themselves, and friends who love them, should consider giving money to help make this possible. If you are taking care of someone, and are reaching the end of your rope, figure out how to make something like this happen for you - and then, while you are gone, really LET GO of all of it. It is better for EVERYONE!<br />
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-46219968432460726252018-05-30T21:31:00.002-07:002018-05-31T05:54:10.386-07:00 Sand DollarsLiving while grieving. Everyone has said it gets easier. I am starting to believe that might just be true, but my experience is that it is easier some days, and others it seems almost impossible. Some days, I have felt mostly numb - that I was simply going through the motions of living. But then, I have actually had a couple of days where I didn't think about Alex at all, until the very end of the day - and that realization comes with a bonus - a pang of guilt.<br />
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So, for the past month I have been engaged in my own personal brain re-training program, and trying to recapture the "real" memories - not the sick ones. If I am going to be thinking about Alex so much, I would rather not make it all about the disease. There were 5 years of illness that were very painful - and a couple of years leading into that that were confusing and jumbled. But there were also about 25 years (give or take) that we lived together before anything started going wrong, and those years hold so many memories - sweet and funny and dramatic and beautiful and... I want to find a way to re-integrate them. I can certainly never forget the ending, but I fear that in all of that very intense (and actually, truth be told, beautiful) time, I will lose sight of all the history that led us to where we ended up.<br />
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In that vein, I went out to Oregon to visit my west coast family, and spent a few days all by myself, walking the coast and doing just exactly what I wanted to do - and nothing else. I did NOT want to be hanging around the house, moping as our 35th wedding anniversary was on May13th. But I also had a mission - I brought a notebook, and Alex's favorite pen with me, and I spent hours writing down old memories. Believe me when I say, that at this particular moment in my life, I take NO memory for granted. I wanted to capture as much as I could think of while it was still somewhat fresh. <br />
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In the end, a lot of what I wrote was a very long thank-you note to Alex. There is so much to be grateful for. All the ways we changed one another in the course of our years together could easily fill several notebooks, and that very long list of things gushed out so quickly I had a hard time writing. As I sat there with my glass of beer (Alex taught me to appreciate beer - thanks, Alex) and the beautiful pen that Alex got in Paris (Alex believed quality was more important than quantity ALL the time - thanks, Alex), I cried and cried, and kept writing, like some kind of lunatic.<br />
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As I wrote, I remembered that the first time Alex travelled without me was in the very early days of our lives together. He was heading "back East" and asked me what I wanted him to bring back for me as a souvenir. I said, "A sand dollar."<br />
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I can't tell you why I love them so much. I think they are amazing - part of me just can't believe they are real. When I lived on the Dutch coast for a year, I went out as many days as I could, and searched high and low for a sand dollar. Up north like that, they are very tiny - and even so, the damned seagulls always got to them first, and they were never completely intact. Every time I visited a coastline, I would search in vain - bringing back my pitiful little shards, and realizing that hanging on to them was kind of stupid.<br />
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So, when Alex came home on New Years' Ever, 1981, he brought me a sand dollar. I was more than impressed. He confessed that he did NOT in fact find it on a beach - but rather had gone to a gift store and found it (almost always better to be truthful - thanks, Alex). I put it on my grandmother's table which sits in front of me when I meditate, and it has been right in front of me every day for more than 30 years when I try to clear my mind.<br />
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With all the years it has seen, it is pretty ratty. But I cherish it nevertheless, because it was the very first gift Alex ever gave me.<br />
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The day after I recorded that lovely memory in my notebook, I set out for a walk on beach. I was all by myself except for some sea birds. Looking out at the waves, and thinking about Alex , I looked down and there it was! A PERFECT sand dollar., Glistening, bright white, and without a scratch on it.<br />
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I was amazed, I was amused, I was simply delighted. Alex was a complete skeptic, I am pretty far along that path, too. But at that particular moment at that particular place, I was certain it was a gift directly from him to me. And for the first time since Alex died, I FELT like maybe we're all going to be okay.</div>
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Many times in the course of our marriage, Alex would remark on how absolutely perfect a particular moment was. In those moments, time hangs suspended, and one feels, if only for an instant, that everything in the entire universe is absolutely perfect. Those moments are a whole life time of memories for me. And all of that came flooding back to me in my few days at the ocean.</div>
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And now I am home again. And of course, life with all of its contradictions continues. There is enough bad news about friends and family and the world to provide a stark contrast. But the seeds of the beautiful are found in the most ordinary things, and the beautiful new sand dollar sits right in front of me when I meditate.<br />
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When I was at the beach, I finished re-reading Peter Matthieson's book, "The Snow Leopard," and many things struck me with completely fresh eyes - it has been years since I first read it. But life is precious - and sweet and bitter and rough and smooth, and it would be churlish (one of Alex';s favorite words - thanks, Alex) to not be grateful for ALL of it - the whole, entire complete experience.<br />
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If you haven't written a list of thank yous to anyone special in your life, I encourage you to give it a try. It is very therapeutic. And who knows, maybe you'll find a sand dollar.DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-61660604524838646592018-04-08T09:09:00.000-07:002018-04-08T09:09:14.998-07:00All Those Naked LadiesUnbelievably, it is nearly 3 months since Alex died. How that is possible, I cannot even fathom. I am sure everyone who grieves has these startling moments - watching him recede further and further away from our daily lives feels pretty awful sometimes. <br />
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The first weeks after he died was completely filled up by to do lists. There was so much to do and so many people around us, that the pain was different somehow.<br />
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But now, there is more time and space for grieving. And it's a whole new level of not-so-great. I envy people who still have the presence of their "significant other," and I find I don't have a lot of patience right now for people who complain about their husbands/wives. It's not that I lack compassion for the little bits and pieces that ARE annoying, frustrating, whatever. I just find myself wanting to yell, "Wake up! This all has a REAL expiration date!"<br />
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I don't, because no one needs me to be their personal Jeremiah. And I suspect a lot of folks just avoid the topic all together because they don't want to open any wounds, or maybe even because I might look/act like a loaded weapon about to go off. That is probably truer than I want to admit to myself sometimes.<br />
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A few days ago, an acquaintance posted one of those standard old "ball and chain" kind of gags - you know the set up - husbands escaping their nagging wives, blah blah blah. And all I could think was, "REALLY????" I completely lack the capacity to shrug that stuff off at this point. It's just feels mean to me - and I have to say, I am not a stranger to sarcasm or irony, so I THINK I still mostly have my sense of humor.<br />
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And in that vein, I have begun tackling one of the projects I have been putting off for months now - sorting through the last of Alex's things and figuring out what to do with them. <br />
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<b>And this brings me to the naked lady problem....</b><br />
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When Alex was first diagnosed, we were made aware that as the disease progressed, his ability to communicate verbally would get progressively worse. If you haven't had to face something like this, lucky you - but perhaps you can imagine how that might have felt.<br />
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Considering that, we decided to enroll Alex in a drawing class. Once a week, Alex and his best friend, Craig, sat in a studio with a nude model and sketched for hours at a time. The hope was that when he couldn't talk to us, he would be able to draw. <br />
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That turned out to be kind of true over the long haul - and more importantly, with a notebook in hand, we could take him places and give him a crutch to distract him when he was anxious or restless or maybe not able to behave appropriately. He could always draw. And for a very long time, it made him happy.<br />
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And, because behavioral variant frontotemporal degeneration affects the part of the brain that "filters" for you, Alex was completely obsessed with nudity and sex - in the early stages, pretty much all the time. Drawing naked ladies suited him perfectly.<br />
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Now, I have hundreds and hundreds of naked lady drawings in my study, and it is a miserable thing thinking about throwing ANY of them away. Some of them are pretty rubbishy actually, but even in the ones he obviously didn't care about, there is a glimpse of something special, something unusual, something he was able to see and experience that was going through his own re-organizing brain.<br />
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Thank God we live in a digital age - because I took pictures of the corners and bits of the ones I finally DID decide to part with, so that I could record them and remember them<br />
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Here is a brief sample for your consideration:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflMn0fS3-2iDp1eJheSj1T5Eu7ysMh7jps6o7NlnPzEZQ-bxpOE0bdiOsiVuX2zrKA0skokP7xAtr4p-4XK3bLF0WMJsIqIgrCBkHxKtBvKESgz6Tgv9Lbu-s9XfgeHrb14JbZZVs9sHa/s1600/20180402_201831.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflMn0fS3-2iDp1eJheSj1T5Eu7ysMh7jps6o7NlnPzEZQ-bxpOE0bdiOsiVuX2zrKA0skokP7xAtr4p-4XK3bLF0WMJsIqIgrCBkHxKtBvKESgz6Tgv9Lbu-s9XfgeHrb14JbZZVs9sHa/s320/20180402_201831.jpg" width="240" /></a>Notice the tattoo..</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLrKX54K5SRs1JqHM0tLshc0K6W1zailj5Fgc53XTTXJfXCiSB5QYpgVFH_UQQeJ6HmC9V-n7Y_L1aCtfAwdrsp6ZooubFVt2zZWtUcByp36UGHfpL0f9f5LkbKptG0V3ddjIM47BoCm-/s1600/20180402_201641.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfLrKX54K5SRs1JqHM0tLshc0K6W1zailj5Fgc53XTTXJfXCiSB5QYpgVFH_UQQeJ6HmC9V-n7Y_L1aCtfAwdrsp6ZooubFVt2zZWtUcByp36UGHfpL0f9f5LkbKptG0V3ddjIM47BoCm-/s320/20180402_201641.jpg" width="240" /></a> Like a classical drawing class..</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge1IKj3HqlUDhDL238MW6srI1Mpdx1VziLjWdWiy6H_c-iv-IiQnorBJ6MJCqLbPezT0XWu_egrcKgtAwSnB_JVdPBKljMzX7qpm7qWpOIPdupiJQz1DzqHz9RpH9og5WRP_U5igDXFQOw/s1600/20180402_201325.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge1IKj3HqlUDhDL238MW6srI1Mpdx1VziLjWdWiy6H_c-iv-IiQnorBJ6MJCqLbPezT0XWu_egrcKgtAwSnB_JVdPBKljMzX7qpm7qWpOIPdupiJQz1DzqHz9RpH9og5WRP_U5igDXFQOw/s320/20180402_201325.jpg" width="240" /></a> Great pony tail - and I like the perspective. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPuUlSqFgZX5e0yBoo_-MxEJ1Aj-Gv7ZqYYIxrgGxCL87ms5lOepxEKZS_MbdSUsoPZRqj99LEuMPcfUnXgxuOulpicGjTvM-MgDl6jLhGqFQ4mTxmddNLMgg9NS32iPIPvwwRuPA7Z1mU/s1600/20180402_204321.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPuUlSqFgZX5e0yBoo_-MxEJ1Aj-Gv7ZqYYIxrgGxCL87ms5lOepxEKZS_MbdSUsoPZRqj99LEuMPcfUnXgxuOulpicGjTvM-MgDl6jLhGqFQ4mTxmddNLMgg9NS32iPIPvwwRuPA7Z1mU/s320/20180402_204321.jpg" width="320" /></a> These are numbered! Alex was always precise.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWeCOezeSAkwMIKOfhWaEz_VazAvISKJl1-45gN_RlBmnZHZ0xADED9bqBHUo9tMU5npjVY1JiCCSHa-BFyELEZJ6mQvtQElmTyBwxs-HsuS4Vb8fmKtBu2wPuuudhmPEWxKs9opECjSv/s1600/20180402_202305.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzWeCOezeSAkwMIKOfhWaEz_VazAvISKJl1-45gN_RlBmnZHZ0xADED9bqBHUo9tMU5npjVY1JiCCSHa-BFyELEZJ6mQvtQElmTyBwxs-HsuS4Vb8fmKtBu2wPuuudhmPEWxKs9opECjSv/s320/20180402_202305.jpg" width="240" /></a> The hands??? Hmm??</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoyEZY5a5qBryX7m0CZEjy8zNh5QVDIJMQBGfKXqMwC0kB9dfA1RaeBQPBT4tF9plR3cZffyL29BsNIXo-VG9CesX6OGZy_Qir4Sky2X0aBdnQwkTDF5XWylUGlgcWvQK2MNNvn0qlypfZ/s1600/20180402_202058.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoyEZY5a5qBryX7m0CZEjy8zNh5QVDIJMQBGfKXqMwC0kB9dfA1RaeBQPBT4tF9plR3cZffyL29BsNIXo-VG9CesX6OGZy_Qir4Sky2X0aBdnQwkTDF5XWylUGlgcWvQK2MNNvn0qlypfZ/s320/20180402_202058.jpg" width="240" /></a> Your majesty? </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3Ln9J-8bfl4dAgdtkUUYr7_U19mP-gxOS8B4Pko60enehBBlgA4Yux7sAgFszcyXvLwxx1GT34APM2mzAJm1wW2ODtUslExGFpPK2OxWI5ajeOYVaQ3fkTs4W0Hr-YZiPoTb6BRhEgei/s1600/20180402_203637.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3Ln9J-8bfl4dAgdtkUUYr7_U19mP-gxOS8B4Pko60enehBBlgA4Yux7sAgFszcyXvLwxx1GT34APM2mzAJm1wW2ODtUslExGFpPK2OxWI5ajeOYVaQ3fkTs4W0Hr-YZiPoTb6BRhEgei/s320/20180402_203637.jpg" width="240" /></a> I don't know who this is, but it's sweet .</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbzNyeeHeshBcWtEsl1_AY8pM8mC4SjY2JDcxK_MxFbMhqfHWpzXp1pwo6b53tMlVkmlqJzWkKUYnUeV1tx5xh1cT_bpafWI8ftnp0GHW7S5vVgLZATUW6FdjU4BY0-cQeA4BuXpqnHAq6/s1600/20180402_205249.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbzNyeeHeshBcWtEsl1_AY8pM8mC4SjY2JDcxK_MxFbMhqfHWpzXp1pwo6b53tMlVkmlqJzWkKUYnUeV1tx5xh1cT_bpafWI8ftnp0GHW7S5vVgLZATUW6FdjU4BY0-cQeA4BuXpqnHAq6/s320/20180402_205249.jpg" width="240" /></a> Who let Homer Simpson in here?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilaF1aeC8kogISIxdzea8ukf3NJVaNYbplr8sKIYW7fXTAOGlz22FO8dhbUcDysmmkdQs2kGkZ_VRW61r1-F1n7U9Cdg46fXp1Kx_tKyCIco29KucvdMIoECt1pB7FjrU7u51nCAbvu5O9/s1600/20180402_205024.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilaF1aeC8kogISIxdzea8ukf3NJVaNYbplr8sKIYW7fXTAOGlz22FO8dhbUcDysmmkdQs2kGkZ_VRW61r1-F1n7U9Cdg46fXp1Kx_tKyCIco29KucvdMIoECt1pB7FjrU7u51nCAbvu5O9/s320/20180402_205024.jpg" width="240" /></a> Self portrait amid naked ladies?? </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0UowL-Iyz8OknQAw5qeBthlh0JCXpL8Ic7zEcyPBe9w2A1hWR7La5oWsxwGp5cIsG-oijkmKLR8bYnz-ylh1nS47EZ7_8zESlxrTb2BFvBc6mUreFiI_o5_LalgvZpBsvjRKQHB-EybP0/s1600/20180402_202422.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0UowL-Iyz8OknQAw5qeBthlh0JCXpL8Ic7zEcyPBe9w2A1hWR7La5oWsxwGp5cIsG-oijkmKLR8bYnz-ylh1nS47EZ7_8zESlxrTb2BFvBc6mUreFiI_o5_LalgvZpBsvjRKQHB-EybP0/s320/20180402_202422.jpg" width="240" /></a> A breast become a bicycle wheel?</div>
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There are many more, and these are just the ones I parted with. </div>
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Two weeks ago, I saw a grief counselor. It's something you get for free as part of the hospice package. Who knew? Much of what we talked about was all-too familiar. But she said something to me that resonated. She said, "You will always have a relationship with Alex. It's just different now." So here's to that relationship - and if you are lucky enough to be in the presence of someone who loves you and understands you and "gets" you, I hope this will make you think for just a moment how utterly remarkable that is!</div>
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-40292108760036460872018-02-17T10:15:00.001-08:002018-02-17T10:36:07.636-08:00Houlding On & Letting Go IncThe weeks since Alex's death have been both sad and sweet - but also awfully busy. The number of things that need to be done to remember and celebrate him are probably familiar to many of you who have helped take care of things after a loved one dies. But it's all new to us - so we are striking out and making it up as we go along.<br />
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One of the things we have done is set up a nonprofit in Alex's Memory. As we searched for a name for it, the obvious choice is HOULDING ON & LETTING GO Inc. (I guess the Inc. is just one of those things we need to have). The money donated to this fund will help support Breck Homes as they continue to provide the best care imaginable in a dignified, respectful, and joyful way. This is our way to give back to the people who gave so much to us - and to provide some financial support to people who need their help and cannot afford it.<br />
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If you would like to help fund this effort in honor of Alex, your donation can be sent to: 4232 Lyndale Avenue South, Minneapolis, MN 55409 - or just given to one of the family members in person. I promise you, we will put this money to good use and help to "pay it forward." We have applied for our tax exemption, so by the time you are ready to file your 2018 taxes, your contribution will be tax-deductible (if that matters to you).<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikzefFEmkTSlNYS_Mxnk_LzzHngNZz5U9dNt3Lhdc85AoWgo0mlnWvT3B1D3weXfqy_l3BlhyphenhyphenUzLT9N8YQGIRAl7W9o54Oq5l6apgpJ_5XBmg5EbOP9nI-DsbEbbLaR_FSMO05F4epBJxp/s1600/real+alex.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="720" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikzefFEmkTSlNYS_Mxnk_LzzHngNZz5U9dNt3Lhdc85AoWgo0mlnWvT3B1D3weXfqy_l3BlhyphenhyphenUzLT9N8YQGIRAl7W9o54Oq5l6apgpJ_5XBmg5EbOP9nI-DsbEbbLaR_FSMO05F4epBJxp/s320/real+alex.png" width="320" /></a></div>
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The other thing we have done in Alex's memory is donate his brain to Mayo Research - and this is something I would urge anyone who has a loved one afflicted by one of the "dementing" (Oh how I loathe that word) diseases - because so far, this is the single best way researchers can learn. The knowledge they will gain from this is to help our children and grandchildren and that is something Alex felt VERY strongly about!</div>
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Now it's done - his ashes sit in a beautiful wooden box lovingly made by his best friend, Craig. And some of them are wending their way to Ireland where they will add to the landscape at the Guinness Factory - another thing he would absolutely love. </div>
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We will all gather next weekend to reflect and remember and laugh and cry and celebrate all the wonderful things he was to us, and all that he so generously gave to all of us. His brother, sister, sister-in-laws, brother-in-law, nieces and nephews are coming from all over the country to be with us, and I can hardly wait to see them all!</div>
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The service starts at 2 p.m. on Saturday the 24th at the First Unitarian Society at 900 Mount Curve, Minneapolis. If you can be there, we would love to see you. There will be poetry and music and good stories and Guinness and I hope there will be a lot of laughter among the tears because that's how I will know that he is still a part of all of us who loved him.</div>
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com2tag:blogger.com,1999:blog-1083706091370906321.post-56936826084034133492018-01-28T16:33:00.000-08:002018-01-28T16:33:14.947-08:00The GiftJust over a year ago, Alex was moved to a memory care/assisted living group home about 5 miles from our house. The place, Breck Homes, is on a beautiful lot. The picture windows in the family room overlook a lake. There are gardens, and a huge deck, and a beautiful sitting patio in the front of the house. The place is filled with pets - some belonging to staff, some visiting. The Break team take their responsibilities very seriously - but not themselves. Every single person has a terrific sense of humor, thoroughly enjoys the residents, and knows how to make life as easy and comfortable as possible for everyone living there.<br />
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The ratio of care - roughly 1 staff member for every 2 residents, the fact that it was a real home - not an institution - and the access to music, art, parks and Guinness (for Alex) made it the only place I looked at that really truly felt right for him. Seeing him in unfamiliar surroundings in a world that was smaller, simpler, better-suited to his capabilities, and better equipped to manage his ever-changing physical and mental needs was excruciatingly painful. To see his world get so much smaller on purpose was admitting to ourselves what we could no longer avoid - that the disease was winning, and that despite his and our efforts and love, there was no way we could keep him at home.<br />
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The Association for Frontotemporal Degeneration warned us that it would take time to get over the grief of moving him out of our home (the one we have lived in together for 32 years). It did - it probably took us almost 3 months to start to feel that Breck really was Alex's new home. So many nights, after visiting him, I would cry all the way home, and cry another bucket or two when I got back. So many nights were like long nightmares as I tried to accept that it had all changed irrevocably and that we would never again spend a night together in bed at the home that he had helped shape and create. <br />
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We tried to take him home as often as possible, for a movie or a dinner or a concert or a walk - but it grew increasingly challenging as time went on. Getting Alex in and out of a car, or up and down stairs could only be managed with a great deal of planning - and with the knowledge that it could all go south in an instant, and would have to just wrap things up.<br />
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Visiting Alex was a mixed bag. I have many beautiful memories of simple things we did together - walks along the river, sing-alongs on the front porch, movies and concerts that DID work out - even dinners at restaurants every so often. Craig tried to continue to take Alex to chorus rehearsals - but as it got harder and harder to put Alex in social situations and transport him, we had to throw in the towel on that one too.<br />
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But there were also visits that were not so good at all. Visits where Alex simply didn't respond to us in any way - or visits where he actually tried hurting himself or someone else. It is important to write this part - this was the exception, not the rule, but those horrible visits wounded deeply, despite all of efforts to try to remember that it was the disease, NOT Alex, doing the really awful stuff.<br />
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But I think what I could never imagine, was that Alex thrived in the new environment. This new smaller world which we at first thought of as just depressing was actually a place where Alex was known and loved by everyone, and where he got some of his confidence back. Here are some pictures which tell a much better story about how his life at Breck was:<br />
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I have hundreds of pictures of him and staff interacting. One of them is of him stepping outside and taking a cigarette break. He hadn't smoked in 35 years - but they decided to get him a vaping pen - and it was as though he had never quit. He blew smoke rings, and tried to "ash" the cigarette, and would throw his coat on to step outside and take a break with Sabrina who was only too happy to let him join her. There is another splendid one of him cycling like a maniac on a miniature stationery cycle they set up for him and another of him doing yoga in his underwear in the living room.</div>
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For many months, he continued to be very busy with his hands and feet- always up for a walk, always happy to go out for ice cream, always willing to play tug of war with one of the house dogs. And although this was not the Alex we had known for so many years, he was a happy Alex who fit in very well most of the time. We threw him an exceptional birthday part in October, and he ate massive amounts of ravioli and covered himself with chocolate and played around with his birthday cards and gifts - while sipping Guinness through a straw.</div>
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Then, just as expected, things started getting worse. He went from being able to go on a short walk with me to having no sense of balance. Making the trip from the easy chair to the dining room table took two aides to assist, and he fell out of bed sometimes, so we had to put special padding along side his bed to protect him. This was awful - because way back, when we had first talked about his bottom line, Alex told me that when he could no longer walk, he wanted to be done - and we were getting very close to the point where he would not be able to manage even a step or two.</div>
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He stopped talking altogether. He would mouth words once in a while but it was as though he could not find a way to get any sound out. So we could see him trying hard to tell us something - but it was a futile endeavor. In the summer, he and I had recited snippets of his favorite poems together, and sang some of his favorite songs. By November, that was all but gone. </div>
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And then December hit - and the changes were happening too fast to keep up with and were much more serious. He really started to lose weight quickly - because eating was becoming just too hard to manage, and he had no interest in it anyway. And to add insult to injury, his digestive system just started shutting down. All the remedies that we tried to help with that made no difference whatsoever, and it was clear that the neurons were not making those connections either.</div>
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Just after the New Year, Alex stopped eating and drinking. We watched in agony as the staff spent 35 minutes trying to get him to swallow a single sip of water. The choking and sputtering and incomprehension that he experienced was physically painful to see. This is not unusual - this is considered the natural progression of the disease, and we had determined in 2013 that no one would ever make Alex eat if he did not want to. We made sure it was in the advanced care directive, and Alex was more than clear about his wishes.</div>
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So we let him stop.We stopped trying to get him out of bed. We stopped trying to make him eat and drink - and the hospice team, aided by the compassionate team at Breck administered the pain medications that would make sure he was not suffering. And I made the decision that I would drop whatever else was going on in my life to spend every possible minute I could with my husband and best friend.</div>
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We filled his room with friends and music. We put lavender oil on his bedding. We swabbed his mouth with a very weak solution of Jameson and water - which he thoroughly enjoyed. His out-of-town loved ones called in and talked to him - no one expected him to answer or talk - but he listened to and reacted to every single word they spoke. We brought in a zen priest to help with some breath and meditation work - and suddenly, for the first time in months, it was so very clear how much he loved us all. It was mysterious - but I think that because he no longer needed to TRY so hard, he was finally able to use what was left of his brain to be with us.</div>
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He listened to stories - held hands (not the death grip he had held onto us with in the past - but really honest-to-goodness hand holding). Chris and Craig visited him every day. Colin and Laura were there every day (except for two days when Colin had the flu). Our friend Liz gave him foot massages, we set off fireworks in the evening for him to see, he kissed us, and in short - it was simply beautiful to see. I will venture to say that everyone who participated in those last days was aware that his powerful love and the love we had for him was like a massive wave carrying us all along. And SO MANY of his friends showed up. It was like a non-stop party in that little room. I would go home in the evening completely exhausted - but awake with an urgent need to get back there.</div>
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This grace period continued for nearly two weeks. No one could understand how he could go for so long without food and water. He was a bag of bones. And he was completely at peace for the first time in months. So he just kept shining at us - and I admit, that by the morning of January 19th, I was thinking that he would break every record and that we could just assume he would last for more days. But he tricked us one last time.</div>
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That Friday morning, everything started to change very quickly. Hospice and Breck had prepared us by telling us what to expect - but there was no way we could have ever been prepared. Not really. Laura and Colin rushed to join me. The three of us sat with him till he took his final breaths. Laura had been playing a compilation they had sung along to for years- The Kinks, The Beatles, and The Stones - and the very last thing he heard on earth was " You Can't Always get what you Want." and "We love you - and we will never ever stop loving you."</div>
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And then, just like that, it was done. He was released from the suffering, and we, who have been missing him for so long, experienced the dreadful shock of grief - compounded by the fact that it was also a relief to see him free of the disease that stole almost every single thing that made Alex who he was. </div>
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So now we begin the work of remembering him. We are putting together the memorial service, looking through old photos, remembering he songs he loved, the food he loved, grabbing the clothes that really remind us of him, and holding onto one another with all our might. We are wiser, stronger, more compassionate, and more appreciative than we were when we began this journey. We would rather have gained our wisdom another way - but that was never really a choice.</div>
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Every new year, I pick a word to set my intention for the upcoming year. On January 1st, the word came through to me loud and clear while I was meditating - APPRECIATE. That's the work of 2018. I can never forget Alex. I can never stop loving him - he is part of me and that will always be true. My life is filled with the gifts he gave me - but to see so clearly that it really IS all about the love - that that's what it means to be human - well, what an amazing gift he gave us all at the end.</div>
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So, on February 24th, if you can't be with us to share the memories, be sure to have a drink of something you love, and savor every single drop. And if it happens to be a Guinness - well, that's just extra credit!</div>
DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-91671733641670492852017-09-05T21:26:00.000-07:002017-09-05T21:26:36.498-07:00Mixed BlessingsThe week before last, my son, Colin, and I flew out to Boston to attend the memorial service of Alex's youngest brother, Richard. <br />
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Richard had been enduring the increasing indignities of Parkinson's Disease for about 20 years (give or take). The last few years have been so hard for Richard, and for all of us who care about him. Certainly it was rawest and hardest for his wife, Margaret, who cared for him at home until the very end, and his children who have watched him change from being a lively, gregarious, hilarious, outspoken, and very committed human to a man who struggled with all of the little and big things that define quality of life. It was beyond cruel to see someone gradually robbed of his ability to express himself and move gracefully in the world, and to see such a self-reliant man become utterly dependent on aides and family and friends to get through a day.<br />
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Because of our own challenges these last few years, visiting him would have been all but impossible for Alex and me, so we have had to get information second hand. What I do think is true by all accounts is that until just the very end when he had finally just worn out, Richard bore it all with wit and humor. He was not a made-for-television hero. He got depressed sometimes, and angry sometimes, and bitter sometimes - that's the reality of this disease. It stinks. That they were all able to find joy in the midst of all of the struggle is just about what the power of love and commitment do to us and for us all - but I don't think any of us can imagine making peace with the disease.<br />
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In some ways, Richard and Alex are like two sides of the same coin. Alex was certainly always the cautious older brother - careful, measured, reflective. Richard was the wise guy. He was direct, and to the point, and he took huge risks - some of which paid off very well for him, and some which would have made Alex curl up in a ball and hide in a corner. Because the two brothers were so very different on the surface, it made for some very lively conversations. Sometimes when Richard would regale us with a story of a deal he had made, or a close call, Alex would listen with amusement and amazement. They were good stories - but they could have been stories from another planet. And I don't know, but I can pretty much imagine that when Alex would talk about literature or poetry or his odd foreign films, that Richard felt the same way.<br />
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But though their tactics differed, Alex had a deep respect for Richard. He was more than impressed by Richard's acumen and insight, and if "the art of the deal" was part of what drove Richard, it was always allied with his love for his family, and his genuine wish to provide for them and protect them - and that made all the more lovable. And they both loved good stories, great food, and fast cars - that seems to be part of what defines a Houlding.<br />
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So when I learned that Richard had died, I felt the sorrow magnified immeasurably by the realization that Alex would not be able to grasp the fact, would not be able to appreciate the gravity of the situation, would not be able to mourn, and would not be able to join the family to celebrate and remember a life lived with such grit and wit. Colin and I had to "represent," and it was just heartbreaking to face that cold hard fact.<br />
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In my list of things that this terrible disease has taken away from Alex, this is a pretty bitter one. Richards' existence has no "present" meaning for Alex. That is the very painful reality of how his mind and emotions work now. <br />
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So we flew to Boston, and met up with the Houlding extended family - several had come all the way from Hawaii, some from Colorado, New Mexico, Washington, and various places "out east." They showed up. We hugged, We laughed. We cried. We drank. We remembered. And we did it all without Alex. His absence was palpable at so many points, and we all know that there will be another gathering in the not-too-distant future for Alex. That threat hung like a cloud over an already too sad gathering. It is cruel and unfair and it's just what we all have to deal with.<br />
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When Richard died, a handful of people said , "It's a blessing really." Boy - does that rankle. And of course, when it was said in my hearing, all I could think was , "Is that what you're going to say when Alex dies, too?" Because although those words are spoken as way to comfort, they are also a way to control the narrative and put all this misery into a "safe" place. <br />
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None of us really think of this as a "blessing." No one wanted Richard to die this way, No one wants Alex to die the way he will. Not wanting someone to live with almost unfathomable suffering is a long way from finding it a blessing. I think we can all accept that it was just impossible for Richard to hang on anymore, so letting go is what he HAD to do. I think we have made peace with that for Richard, and we are getting there for Alex. <br />
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Here's where I think the REAL blessing is. <br />
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When we all gathered together to remember and mourn the loss, the love and comfort we all shared together was pretty miraculous. From the oldest generation down to the toddlers, we were all going through it together - side by side, each in our own way. For those few very precious days, time had a completely different pace and meaning. Just being there together was all we could do at that point - but it was everything.<br />
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There is a great photo of all of us after Richards' remains were buried, and it is a very lively group. We did a lot laughing together. As I looked at that room and took it all in, I realized what a great time we were having, and how very much we were enjoying being together and listening to one another (and goofing off together).<br />
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You can't wait until all the edges are smoothed or all the frayed edges are knitted together before you can live. You have to live, and live completely, in the middle of all the mess. Because it's all a mess, and it's always going to be. There really is no better way to be than just the way you are, and no better time than right now - this very minute. I know that's not a particularly novel or fresh thought - but I felt it in my bones while we stood there together. <br />
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When I got home and saw Alex, I wanted so desperately to share it all with him, and it was just impossible. But what I DID have was a wonderful photograph of his siblings taken a little more than ten years ago. Richards' disease had already made its presence felt, and some of what would define Alex would start to change not long after that - but they were so obviously having a wonderful time together the day it was taken. I showed him the picture and we said the names of everyone and each time we got to the end of the names, he grinned, and we started over. <br />
<br />
It might not seem like a lot - but right then, it seemed like everything.<br />
<br />
<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-73614665660898258962017-03-19T20:48:00.001-07:002017-03-19T20:48:25.221-07:00How is Alex Doing?It has been just two months since we moved Alex out of our home, and it I think it is the most confusing emotional adventure I could never have imagined. In any given day, we go from guilt, depression, amusement, grief, acceptance, appreciation, peace, anger, fear, worry - you name it. And the feelings come tumbling one after another, and they get mixed up in each other, too - so when people ask us how we are doing, it is a seriously difficult question to answer.<br />
<br />
So first, let me tackle the other question I am often asked, "How is Alex doing?" And I have to say that's not a very easy question to answer.<br />
<br />
First off, I don't see Alex every day. I hear over and over again about the saintly family members (usually husbands and wives) who go see their loved one every single day. Well - good for them. I work full-time and I still play my violin for pleasure and I still go to yoga classes and workshops - oh, and sometimes I like to spend time with other family members or friends NOT talking about, thinking about and/or worrying about Alex.<br />
<br />
Sometimes when I get there after a long day of work, he is already in his pajamas, ready for bed, and completely out of it. The house he stays at goes very quiet in the evenings. The other residents are often sitting in lounge chairs, wrapped in blankets, and either passed out cold, or only semi-awake - and when Alex is awake and about at that time of day, he is usually sitting at a table coloring, or crawling around on the floor, kind of trying to do his pushups, or he, too is passed out while the Hallmark Channel plays softy in the background.<br />
<br />
So - that can be a pretty depressing way to end your day. If this were a Hallmark movie, then he would brighten up when he sees me, and I would wish him a good night, and he would nod off to sleep, glad that I stopped by. But this is most definitely NOT a Hallmark movie - and he is often so absorbed in whatever he is doing, that he really barely notices that I am there - or even worse, seems kind of annoyed that I am in his way. <br />
<br />
Most of the time when I get there, he IS happy to see me, but it is also way too easy to read too much into all that - one way or another. And I do not think that means that when I am not around, that he actively misses me. So on the whole, I think he is reasonably happy there, and that his life has a kind of rhythm that works for him. It is hard to imagine that this is enough of a life for the man who was always so curious about the world around him, and so active. But that's really where he is now.<br />
<br />
The staff is SO good to him. They take wonderful care of him, they genuinely enjoy him, and he is relaxed around them. That is everything we could have wanted for him at this stage, and it still about the crappiest thing you could ever want for someone you love.<br />
<br />
On the weekends, I pick him up and take him out for hours at a time. We'll go home and have a dinner together, or I will take him on errands with me, or if the weather is nice, we will go for a walk. But he cannot make the distances he used to - he is having trouble coordinating his movements, and when he falls (and he does sometimes) it is very hard to get him upright again, and I need to get help. How does he feel when that happens? I really don't know. I think he is confused about it, surprised by it, then he just moves on to the next thing. <br />
<br />
When I take him out in public (to a grocery store or the dry cleaner or the car wash), it is clear that he is not "normal," and his odd behaviors, unkempt appearance, and the drooling can make people either recoil a bit and put some real distance between themselves and him, or give me a wisely pitying look (yuck). I do get it, though, because it's hard for US to know how to engage with Alex, and we have been living with this disease for 5 painful years. Sometimes strangers are amazingly kind and understanding in his presence, and that can be breathtaking, too. But mostly the world around is not well-organized for Alex and me, so it can be difficult to take him places.<br />
<br />
And then there are moments that take me by complete surprise. Today, for example, while we were running errands, I was listening to Shostakovich's 3rd String Quartet (my latest musical obsession) in the car. I need to keep him occupied when he is in the front seat of my car, because otherwise he tries to open the door while the car is moving. So I handed him the liner notes, and explained what each of the movements we were listening to were about - and it seemed like he was REALLY paying attention, When we got to the elegy, I told him that is was about all the people Shostakovich had lost in the war and purges, and that sometimes when I listen to it, it breaks my heart a bit because it is so very sad.<br />
<br />
I never know for sure if Alex is really listening to me when I talk - I have misjudged it one way or another many times - but I did feel like we had an opening for just a minute. And when I dropped him off and gave him a good bye kiss, he hugged me very tight, and said, "I love you, " (which he never does) and I thought I would simply never stop crying.<br />
<br />
Is he still Alex? Somewhere in there he still is, but mostly we lack any way to reach him. To imagine what the time we spend with him "means" is a real head game - and it doesn't actually help. And, I would like to report that holding his hand or stroking his arm seems to bug the crap out of him sometimes. ( Educational materials for "caregivers" often emphasize this importance of this kind of touch - like it's some kind of magic bullet that will enable you to connect with a loved in. Rubbish!) <br />
<br />
Am I glad we moved him? No. <br />
Am I sorry we did it? No. It needed to happen. He needs to be there. It is a good place for him - AND it sucks. <br />
<br />
On the dark days, do we all wish we would all be released from this drama? Yes. <br />
Do I want him dead? No. <br />
Does he know what's going on? Yeah - No. Sometimes. Mostly not. <br />
Is that a relief? Oh no, not at all. <br />
<br />
So he is on his own path. And sometimes, we "get" him, and sometimes we don't. And sometimes, during the day, when things are busier at Breck, Jenny will send me a photo like these<br />
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and my heart will melt, and I will feel like he really IS having a good life. Or anyway, the best life that he possibly can with the capabilities he has - and that has to be enough, because that's all we've got. <br />
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<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-5272473539522927992016-11-11T00:08:00.001-08:002016-11-12T06:06:17.109-08:00The Art of Letting GoThese last weeks have been such a jumble.<br />
<br />
As I mentioned in my last post, Alex was evaluated for hospice, and it was determined that he meets the criteria. Because of this, we are now receiving all kinds of extra help and much of it is very welcome. But with the help, comes the realization that we have to face things that I would rather defer, and while no one can say how long Alex has left, it is clear that he has begun to let go. <br />
<br />
Changes in function used to be more dramatic - but these days, they just pile on, little by little. So much of his thinking self is gone, that it is hard to see what else this disease has left to take. Alex is not yet completely mute - but he speaks very little, and in an average day, he might be able to answer only a few questions. I think he still comprehends - but he just cannot retrieve words easily, unless they are part of a song, or a rhyme that he memorized years ago.<br />
<br />
With this illness, we will reach a point where Alex will no longer comprehend, where he will be either completely mute or nearly mute, and bedridden. There is a tipping point at which the damage to the brain causes such profound impairments that the physical body just cannot be managed. It is technically true that people don't die of FTD - they die from the effects of FTD by choking to death, or becoming unable to fight off disease, or sometimes just falling and injuring themselves. But FTD is the reason those things happen, so sometimes I think the medical profession is splitting hairs when they talk about this.<br />
<br />
It is my hope that when we reach one of those last stages, Alex will no longer be interested in eating. If/when that happens, I think he will be telling me in the only way that he can that he is really, truly done. We will honor that, and let him go. Everyone I have talked to in the caring professions tells me this is an easy and good way to die - and I want to believe that we can help Alex to an easy and peaceful death.<br />
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I do not want him to go on getting worse - and I do not want him to be dead. And really, I have no idea how to help some one die. The thought of it terrifies me and while I know with all my heart that I want to and need to be by his side to see this through, I cannot even imagine what that will really be like.<br />
<br />
My father liked to set up thought exercises for us, and last week I recalled one that came right from his high school philosophy class. He asked us:<br />
"Imagine that you are in a situation where you know you have only two hours to live. No one is going to pardon you. There is no hope of escape or rescue. You are simply going to die. And it is irrevocable. And you know it. How do you imagine you will spend those last two hours?" <br />
<br />
He had asked his students, and he asked my brothers and me. We started out by thinking of all the ways we would escape the situation, but he would not let us off the hook and reminded us that even thinking that was futile. We moved off of that point, and then tried to come up with lofty and high-minded things - I suppose because when your father is a teacher, you want to give the "right" answer. So we said we would do things like pray for two hours, or really spend two hours appreciating all of the beauty in the world, or writing a good-bye letter to our loved ones. <br />
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My father wanted us to think harder and he would not let us off the hook with facile answers. So he said, "Could you imagine that you might simply be paralyzed by fear? That perhaps all you might be able to do in those last two hours is be very frightened and unable to think about anything else?"<br />
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This was meant to provoke more thought and discussion, but I remember thinking that he was probably right and it seemed like a really radical way of thinking.<br />
<br />
And now Alex is in hospice, and these questions are no longer theoretical for us. <br />
<br />
When the hospice team finished their initial assessment, and determined that Alex is indeed eligible for this service, I was physically sick. It is terrifying. It is visceral. It is also absolutely the right thing to do. <br />
<br />
The kindest and best thing to do at this point is to let the disease take its course, and make sure that no one tries to do anything "heroic" like administer CPR or haul him in for an emergency surgery, or even set him up with a feeding tube. This is the moment where we have to face the reality that there is not a pardon or reprieve around the corner, and that whatever unmeasurable amount of time Alex has left, we intend to focus on making his days as good as they can possibly be.<br />
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Every week, a hospice nurse shows up and checks Alex's vital signs, and asks us questions about how we are doing. If we need a drug to provide comfort, it shows up by speedy delivery. We now have a supply of medicine that is simply waiting for the day when things get really worse, and we need to step up to keep Alex comfortable. Knowing that those drugs are in my house feels like being right in the middle of my father's imagination exercise. And just in case I forget, every week the visit from the hospice nurse (who is WONDERFUL, by the way) reminds us of where we are heading.<br />
<br />
So at first, being the ACTIVE person that I am, here was what I thought:" If we only have 6 months left, working backwards from that, how many things that Alex would love to do can we squeeze in before he shuffles off this mortal coil?" It's such a GOOD story to tell yourself - and it's a lot like a Hollywood movie, and a lot like the "correct" answer to my father's thought exercise.<br />
<br />
But here's the deal. What I think Alex would like to do in his last 6 months on earth is not anything like what the OLD Alex would have loved to do. That is not the Alex in front of me. The Alex who lives in my house now is looking for steadiness and comfort and predictability. A cruise to Alaska or a trip to the best restaurant in Chicago are simply not in the cards right now. He would be far too anxious about all of the uncertainties, far too bothered by things he is no longer able to understand, and much too indifferent to the big picture to really appreciate the scene.<br />
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I have tried to imagine ways we could still take him to some of the places he once loved. We would all need to adapt tremendously, and be prepared to change our plans without any notice, but I could see a way to do it, and I would do it for Alex if that was what he wanted.<br />
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But when your brain cannot focus on things, when traffic rules don't make sense to you, when noisy restaurants and crowded airports make you anxious, and when you really can't understand what people are asking you for a good part of the time, when your brain cannot will your body to do the things you want to do, and when you can no longer take care of even the basic tasks of daily living, how much zest will you find in a "bucket list?"<br />
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Today we took what I think will be our last trip to Mayo. It was the official close out visit for the study, and it was another profound reminder of where we find ourselves. I signed the papers today that will send Alex's body post-mortem to Mayo for an autopsy. This will allow researchers to learn from what has happened to him - and if studying Alex's brain can help one other person on this planet, then I know that's what we have to do.<br />
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But signing that paper was just one more step in the journey that we don't want to take.<br />
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Next week, Laura and I will take a break from all of this, and Alex will go to a group home for a week where his cares will be other peoples' concern. It is a wonderful place. The people who work there love and care for the folks who stay there, everything is arranged for convenience and safety and comfort, and in the midst of all this loss, it is a bright and cheerful place just bursting with laughter. <br />
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And here it is - the point at which I think we know we will soon need to move Alex to this group home, because although his own home is comfortable for Alex, we are simply not going to be able to provide all of that special care for him. And what I absolutely cannot face yet is the thought that if/when we make that move, that will be where Alex dies. It is unimaginable to me. The thought of it quite literally takes my breath away and makes me burst into tears. Of all the things we have had to face, this is the most difficult. <br />
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As I talked to the director of the home today, I realized that all the places where I am weak, she and her team are very strong. They absolutely DO know how to help someone die, and if I really love Alex as much as I say I do, then I will let him be with the people who can help him best at the end. It turns out that helping Alex die is not so much about what I want FOR him- and everything about what he needs. <br />
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I am truly grateful that we can get this help and support and love, and that we will make Alex's last months, days and hours as good as they possibly can be for him. There is some real peace knowing that.<br />
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And by the way, I was right beside my father in his last hours on earth, and I do not think he was at all afraid at that point. He simply slipped away from us, and probably never even realized he was leaving. So much for philosophy exercises....DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com3tag:blogger.com,1999:blog-1083706091370906321.post-11489590251611864542016-10-04T22:22:00.000-07:002016-10-04T22:22:14.557-07:00MischiefThis is the end of FTD Awareness Week, and as I read more about what other folks are going through, and reflect a bit on our journey, I am pretty grateful for all the wonderful help we get, and all the friends and family who have "been there" for us. It is weird to write this at the same time that I am getting to know the hospice helpers and volunteers who have arrived on the scene - but really, we are lucky!<br />
<br />
I read a staggering thing last week. The annual average cost for a family taking care of someone with FTD is about $130,000 per year. That is about double what the annual cost of caring for an Alzheimer's patient is. What accounts for the difference?<br />
<br />
Allow me to illustrate with an example. At an FTD support group I attended, one of the other wives was telling stories about her husband "breaking" things - like, sawing off the steering column of the family car, and disconnecting the gas dryer in the basement because he needed to "fix" it (and yes, the house was evacuated as a result). <br />
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Other families get sued - because their loved ones behave so inappropriately that they need legal defense. And sometimes, people with FTD who get put into residential care get bounced out and relocated (repeatedly) because their behaviors are so difficult to handle.These are expensive problems to deal with - and this is over and above all the other healthcare costs and other day-to-day expenses.<br />
<br />
Nancy Carlson, the children's book author (http://nancycarlson.com/) speaks very eloquently about how her husband's failing judgement bankrupted their family. Her painful journey was not helped by everyone's inability to see what was happening to him, and by the time they figured it out, he had brought financial ruin to the household.<br />
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As I said, we are lucky by comparison.<br />
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So far, Alex is more in the petty misdemeanor column. He does try to shoplift from candy counters, so I watch him closely when we go out, and I let him sneak stuff into the grocery cart because it's better than having him stuff things into his pockets and easier than battling with him in the aisle of a supermarket where we are certainly a very bad example for small children.<br />
<br />
And I can see how easily Alex could really hurt someone - without ever having the slightest intention of doing so, or even any idea that he had done something wrong. He is still very strong, and completely lacking in restraint. I discourage handshaking for this reason, and carry things (like chewing gum) to divert his attention when he simply refuses to let go of his latest victim's hand. <br />
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He is a Marxist now. There is no private property in Alex's view of the world, and most of the time, we just deal with it. But when a person pours his orange juice into your half-drunk glass of beer - well, that's a line that no one should ever cross. Did I lose my composure? You betcha!<br />
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He also doesn't seem to understand personal space any more. Awkward...<br />
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I see things in Alex that others don't. I wonder sometimes if I am deluding myself. It can be very hard to see past the symptoms to the person underneath, but one thing that I think remains with Alex is a love of making mischief. <br />
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For example, our nephew Jesse cam to visit for a day. Alex had not seen him for a while, and Jesse now shaves his head. In the old days, I am pretty sure Alex would have teased him about being bald as an egg - like Uncle Harry. Instead he drew the following picture of Jesse on the family whiteboard:<br />
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And a couple of weeks ago, we went the symphony, where Alex drew this amazing likeness of the soloist, Joshua Bell, who I assure you, DOES look like a bird!</div>
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I don't know where the cigar came from....but still...<br />
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And on the way to dinner with his brother, Andy, the other night, we started singing WHEN I'M 65, and Alex sang, "when I get older, losing my mind.." He was absolutely making a joke, and since FTD literature will tell you that the sense of humor is one of the first things to go, it makes me think that wittiness that appealed to me all those years ago is going to be one of the very last things to leave him completely.<br />
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So when you see a strange older guy with a very peculiar expression poking people with a miniature American flag, we still see part of Alex. Not very appropriate at a solemn occasion, but not completely out of character, either.<br />
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Tomorrow is Alex's birthday. Last week he told me he was 38, and today he said he will be 42. Each time, I pointed out to him that our son is 30 - but that didn't bother him in the least. Consistency is a pretty artificial concept, actually, and it's good to be reminded of that sometimes. <br />
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So, at the brink of what I expect will be his last birthday (or at least, the last one that will resemble a birthday in any way for him) I am just not sure how many candles to put on the cake. Pretty liberating, I think.<br />
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And once again, I am lucky, because if he's 42 then I just turned 30. DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-32302775122527450572016-09-12T23:48:00.000-07:002016-09-12T23:48:42.408-07:00Giving it a RestToday we learned that the research drug Alex has been taking for two years has failed to meet any of the defined objectives, and that it provided no gains or benefits for the subjects who took part in the study.<br />
<br />
Part of me is not at all surprised to learn this - I think it has been becoming clearer to us that Alex is certainly not improving, and is not holding steady in any way that we can imagine, It's always hard, though, because we are just one family, and we don't know how this disease "typically" looks or acts - so even though it would be bordering on pure superstition, I think we were all holding out hope that is was doing him some small amount of good. Knowing that's not true is a bit like getting sucker-punched yet again.<br />
<br />
So tomorrow morning, bright and early, the hospice team from a local hospital will be coming out to assess and evaluate Alex. The sad facts are that he has lost 20 pounds in the last three months, that it is becoming increasingly difficult for him to express himself, that he is losing more and more control of his body, and that he is more uncertain every day of the physical world around him and his ability to manage in it. <br />
<br />
I think this officially means that we are not "fighting" this disease any more. In fact, we never really were I guess. It's complicated - looking back on all the little victories and tragedies that have made up this journey, it is time for all of us who have cared for Alex to take some credit that we helped make some of the good stuff happen - and to give an IMMENSE amount of credit to the man himself for holding himself together so brilliantly for such a long time.<br />
<br />
If you ever wondered why your school teachers made you memorize poetry and recite it - well, Alex is why. Because even at this advanced stage of the disease, he can recite stanzas from poems he learned when he was a child, and when he does, he connects to the words and himself and is happy. <br />
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And if you have ever wondered whether it is a good idea to stay physically fit, well Alex is why for that too. Because even now, even today, he went for a bike ride with his best friend, Craig. Yes, it's chan<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHqouWgcWwAfvBxRqrpHQXUgHuqyuBI4nA5F5occ3fwcsKVtrQbu0mWiCDROiNSrKLyCtBIcLoTxopP77t-mCHIZuMOgfgQ4FukJI_JKutX1uEgo7GSf6dQqyubFEN9nhU3j_G5eb-3-i8/s1600/20160913_011452.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHqouWgcWwAfvBxRqrpHQXUgHuqyuBI4nA5F5occ3fwcsKVtrQbu0mWiCDROiNSrKLyCtBIcLoTxopP77t-mCHIZuMOgfgQ4FukJI_JKutX1uEgo7GSf6dQqyubFEN9nhU3j_G5eb-3-i8/s320/20160913_011452.jpg" style="cursor: move;" width="180" /></a>ged - it's a tandem bike now, not the custom<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwforHTsnOI0PzkaxiEpdTSfhMApadN1dz8Tl2dpLStxzqQNPx0STFtlUn5vlaozRPBGy_QLUwY8e1QkuTuZ9rfiA9ONj0heoLyDqTVwNSGFQoY1dfELQ-m_8jB1xRSAEiY5fFVMNx-Dul/s1600/tandem+bike+ride.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwforHTsnOI0PzkaxiEpdTSfhMApadN1dz8Tl2dpLStxzqQNPx0STFtlUn5vlaozRPBGy_QLUwY8e1QkuTuZ9rfiA9ONj0heoLyDqTVwNSGFQoY1dfELQ-m_8jB1xRSAEiY5fFVMNx-Dul/s200/tandem+bike+ride.jpg" style="cursor: move;" width="200" /></a> racing bike that he charged away on when I first met him. But it is something he truly enjoys, and I think that for some part of the time when he's on that bike, he feels a sense of the freedom he used to feel.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwforHTsnOI0PzkaxiEpdTSfhMApadN1dz8Tl2dpLStxzqQNPx0STFtlUn5vlaozRPBGy_QLUwY8e1QkuTuZ9rfiA9ONj0heoLyDqTVwNSGFQoY1dfELQ-m_8jB1xRSAEiY5fFVMNx-Dul/s1600/tandem+bike+ride.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>And if you ever wanted to know why you should care about music or art, then understand how much pleasure he still takes in singing with his friends at MacPhail or listening to music that he used to love. Is it the same spontaneous and rich pleasure he used to take in it? Obviously not - but it still provides a measure of meaning for a man whose brain has trouble connecting to other things.<br />
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The power of the music taps into some essential part of his identity, and he is able to express expressing himself, And when he draws us pictures, he is finding a way to "talk" to us and himself that words can't quite do for him anymore. (And really, we are all naked under our clothes - I think he is just observing that for us).<br />
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<br />
He is still very much alive and trying to "break through" in whatever way he can manage to us. So- now our thoughts turn to making the time he has left on this planet as good as possible. I have no idea what the next set of challenges will look like, or how they will feel. And I would be lying if I said I was not afraid. I am. We all are. <br />
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So - I am sad the drug didn't work, but glad that Alex no longer has to worry about being a Smurf. For all of the thinking and planning we have done, I have no idea how we will actually navigate through the difficult days that lie ahead for us. <br />
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<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com1tag:blogger.com,1999:blog-1083706091370906321.post-33202733729390866412016-08-03T23:17:00.002-07:002016-08-03T23:17:59.114-07:00Unplanned LessonsThe last full moon marked the Hindu/Nepalese festival called Guru Purnima. Until last week, I did not even know such a festival existed, but one of my yoga teachers, Ali, told us this is the festival which honors teachers (gurus) - in whatever form they take.<br />
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This struck me, because my father was a teacher, and this holiday came right on the heels of the anniversary of his death. He was obviously one of my first (and best) teachers. He always said that the job of the teacher was not to put light into the eyes of his students, but rather to turn his student's eyes toward the light. So his way of teaching was to challenge us - to challenge us to think things out for ourselves, to appreciate logic and reason, and to never stop being curious about the world.<br />
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He loved history and he loved talking to us about big ideas like what it means to be human, and what reality is, and whether there is free will, and whether there is a God in heaven managing human affairs. I felt so respected when he asked those questions of me as a child- even as he would prod me to think a little more deeply about the answers I gave, or ask me to explain myself more fully.<br />
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It's kind of inevitable then that I think the best teachers are those who challenge you. They rile things up, they make the world much more interesting and rich, and they call upon you to bring all of yourself to the lesson.<br />
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So if a guru is someone who challenges you and shakes you up and wakes you up, then that is pretty much what this disease has done to all of us. And as I reflected after the yoga class, I wanted to try to come up with a neat list of all the things that it has taught us - you know, something kind of inspirational.<br />
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Really, trying to write all that stuff turns into a whole bunch of clichés about never taking anything for granted, being grateful for the small joys, blah blah blah.<br />
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Here's the REAL lesson in it for me - and the hardest one. It all comes down to learning to let go. It is a lesson that comes up over and over again with nauseating and heartbreaking regularity. With each new symptom or change, we lose a little more of Alex. And although I know better in every way, I DO cling, stupidly, angrily, stubbornly and impossibly, cherishing the glimmers of the "old" Alex when he appears. And when we have one of those breathtaking moments when it is absolutely impossible to pretend that the lost things are ever coming back, it is agonizing.<br />
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My father's death was shocking and sad and terrible. I still miss him, I wish he were here to talk to me, I wish I could just mess around with him the way I used to, or talk about what we've been reading or watching or doing. But eventually, I have made a kind of peace with it. That seems somehow like "normal" grief.<br />
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I miss Alex every single day,and yet he is right here beside me, all up in my business, demanding attention. As he loses more capability, more and more is demanded of all of us. It is ceaseless and escalating - and good luck trying to live in the present moment when you cannot help but think , "It can't possibly get worse than this," when the one thing you can be pretty sure of is that it absolutely will.<br />
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Making peace with this reality is a big educational project. I have told myself for years that when awful things happen that are out of your control, you still get to choose what you do in response - how you react to it. That's all you've got. Turns out, I maybe have a bit more to learn about that.<br />
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Grief just takes you over. You don't choose it, you don't select it, and you absolutely cannot wish it away or cover it up. It will make its presence felt, and it will not let you go until you have felt it. And it will come back when you think you are rid of it, and it will re-appear on an otherwise perfect day to nudge you and maybe even swallow you up for a while.<br />
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And it turns out that ALL of the emotions that cycle around are not chosen. Becoming angry and yelling at a person who simply can no longer comprehend anger is like watching a Looney Toon unfold right in front of you eyes. Even though people who want to help through this will say, "Of course, you're not really angry at Alex - you're angry at the disease," I assure you that when I am angry, I am absolutely angry at Alex. And even though I know it's stupid and pointless, and that it will not make anyone happier or make anything better, I am still angry and disappointed sometimes. Just because I know better than to act that way doesn't mean that I will stop doing it.<br />
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So every day when I meditate, I set an intention to "let go." And by that, I mean that I want to try to let go of all of it. To let Alex go and gracefully accept that he has changed and that he will continue to change. But also to try to let go of the fear and the anxiety and the guilt and the stress, and all the rest of it. Every so often, I actually manage it, and when I do, I think I see a glimmer of the other really big lesson I have learned in this - that love really is stronger than fear. But it is a constant re-educational effort to learn to make room for it.<br />
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Over the next weeks and months, I will be trying to figure out how long we can keep Alex at home, and what we will do when he can't be here any more. At first, I could not even make myself think about that. Now I am making a plan. And somehow or other, I am sure we will work it out and manage it.<br />
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Last week, for the only time since he was diagnosed, Alex told me he just wanted to quit - that he did not want to live this way anymore, and I had absolutely no idea whether he actually meant it, or if it was really all about his not wanting to take another blue pill before he went to bed. I cannot emphasize this strongly enough - I had absolutely no idea whether he actually meant it or not, but I was devastated. We have been working so hard on making his life as good as possible, and fighting against the worst indignities this disease brings, and always we have been doing it thinking that it would be what he wanted. I never doubted that. And so here was the first doubt, and I could not stop crying no matter how hard I tried.<br />
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But hey, the next morning, after a good night's sleep Alex was happier, and he had a good day, and we even managed a couple of laughs. So that's another big lesson - sometimes, you really can take this stuff way too seriously. The distance between tragedy and comedy is not very far at all, and I will always have better days when I simply lighten up and laugh at myself, too.<br />
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So those are my "inspiring" lessons. Sorry - not much anyone can use there to make a self-help book. But, if you are sitting somewhere in the course of this disease (or some other awful crisis) I will say that joy springs up on us exactly the same way grief does. Maybe not in equal measure - maybe not as much as it used to - but it still does, and when it does, it is very sweet indeed.<br />
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And more than ever before, I find myself moved suddenly and impossibly by the beauty there still is in the world. A beautiful piece of music, a perfect summer's day, something wonderful that one of my children says to me or does for me, an act of kindness - all of these things seem to be able to touch me more deeply and mean more than they ever did before. And sometimes when I look at Alex, I think I can see clear through to his soul.<br />
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Maybe that all would have happened without this disease staring us all in the face the way it does. I can't say. I have no other reality to experience but this one, but I believe that some of what it has taught us will stay with us for a long long time. <br />
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<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com2tag:blogger.com,1999:blog-1083706091370906321.post-43142326840984666902016-07-11T00:24:00.000-07:002016-07-11T00:24:01.140-07:00The ChangelingIt's a funny thing - we give ourselves a lot of credit for some specific personality traits. We think highly of people who exercise good judgement (whatever that means). <br />
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We are proud of our self-discipline, impressed by the ability to focus - and we assume that manners and compassion and empathy are things we learn early in life and that they will stay with us all of our lives. If anything, I have always assumed that with age, humans tend to become more compassionate as they navigate through the various changes in their lives. <br />
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In my world view, being compassionate, being empathetic, learning to forgive others, and loving other people are traits I value above almost all else. I can disagree with someone on almost everything, but if they are compassionate and empathetic and kind people - well then, they are "good" people.<br />
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So here I am, living closely with a man I love with all my heart - who used to have all of these traits in spades, and now does not. This very peculiar disease has really truly turned my entire world upside down in thinking about "character." It turns out that once the right temporal lobe of your brain gets damaged enough, you are not able to "feel" the things that we consider such moral certainties. <br />
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In thinking about how to describe Alex, I am reminded of the book, "Outside Over There," that I read to Laura when she was little. If you don't know the story, it's about a big sister whose baby brother is stolen by goblins and replaced by an ice baby. "So the goblins came. They pushed their way in and pulled baby out leaving another all made of ice. Poor Ida, never knowing, hugged the changeling and she murmured: 'How I love you.' The ice thing only dripped and stared, and Ida mad knew goblins had been there."<br />
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It is disturbing in ways I lack the power to describe. Emotional response has lost every trace of subtlety for Alex. It is not that he feels nothing - but only that the nuances are completely gone, and the ability to put himself in someone else's shoes no longer exists.<br />
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In all the ways I have been taught, Alex is no longer capable of being a "good" person. He will step on your foot, shove you out of the way, turn the lights out on you if you come up from the basement after him, take your place in line, pull the cat's tail, sneeze on your dinner, and not appreciate it if you do something really nice for him. He will eat all the cookies on a plate without ever considering sharing. If you look away for an instant, he will eat your cookies, too. <br />
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When people are shocked or irritated by his behavior, he takes on a funny look. In Alex's most recent medical notes, the doctor noted that Alex had a fixed affect that would best be described as "sardonic." (Since Alex has always had more than a bit of that going for him, some part of him might be pleased at that.) However, when someone has just taken food off your plate, and then looks at you sardonically when you get mad at him - well, let's just say it doesn't make you like him more.<br />
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But in the weirdest way, he is so unrelentingly easygoing about it all, that just as you are thinking about murdering him, you see something sort of holy about it. There is not a trace of malice in any of it. There is a kind of innocence in it - and every so often, it is hysterically funny. So we hug the ice baby, and he really does just stare (or maybe grimace), but what shows on his face is not a good measure of the person inside there.<br />
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He has lost his "filters." When he draws (and he draws often), the pictures are invariably rude and nude and totally inappropriate. He will draw them anywhere. On an airplane, he was busily drawing a woman with the most ENORMOUS knockers AND male genitalia, and the polite woman sitting next to him asked if she could take a look at his drawing. The look on her face....priceless.<br />
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By the way, if he is with a bunch of pre-schoolers, and has the opportunity to draw, he will do exactly the same thing. This can be hard to explain.. <br />
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Our season tickets for the symphony are right at the front of the main floor of a hall that is famous for its amazing acoustics. I took him with me to see a performance of the Berg Violin Concerto a couple of months ago, and before it started, I told him that this was one of my favorite concertos. He listened restlessly for a while (the piece is challengingly dissonant) and then said loudly, "Why do you like this?" I shushed him, and wrote a note telling him he needed to whisper - but whispering is no longer possible. So I told him to draw a picture for me while he was listening, and he drew a beautiful violin that morphed into a woman with big breasts.<br />
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Is he happy? I think so. I think he is not unhappy. <br />
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But I also think that all of his emotional responses are very blunted (except for fear and anxiety -which seem to have taken a firm hold on him). And for all of the philosophical talk about living in the moment - well, anticipating a good thing is a delightful pleasure and it is one Alex no longer can experience. <br />
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Is he still a good person? <br />
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There is an old Buddhist adage, "Good and bad are ways of not seeing." That's what I think. I think that if I worry about whether Alex is good or bad, I stop seeing the very real person in front of me. That person, with all of his oddities, needs my love and compassion and empathy even if he no longer knows he needs it. And I humbly realize that my ability to feel these things is an incredible gift that could be stolen from me without much warning.<br />
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Carpe diem!<br />
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<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com5tag:blogger.com,1999:blog-1083706091370906321.post-74637581174541418002016-06-22T23:00:00.001-07:002016-06-22T23:00:26.718-07:00Becoming a Smurf for ScienceBecause of the work I do, I often find myself meeting with and talking to people who are involved in clinical research. It has made me an advocate for research, and I feel that people everywhere are missing opportunities because they simply don't know about what's out there.<br />
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Almost as soon as Alex was diagnosed, I began to trawl clinicaltrials.gov and every other web site, book, or pamphlet that might yield new information, insight, or hope. In the summer of 2013, there really wasn't anything out there - but we did try both Namenda and Rivastigmin. There was a slim chance that some portion of his symptoms might have an Alzheimer's component to them, and since there was nothing else, it was worth a try.<br />
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Then, a new drug appeared ready for Phase 3 research trial - a tau disrupter known as leuco-methylthioninium. At first, it seemed like we would not be eligible because of age restrictions - but by spring of 2014, the criteria were changed, and we were able to be screened.<br />
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I would LIKE to say that this development was on the radar of Alex's doctors here in Minneapolis - but it really wasn't. We signed up for TRIAL MATCH the week after we were diagnosed, and they did not rush to contact us about this. It was our own effort and curiosity (and some of my "insider" knowledge) that got us on the docket early. Maybe it all would have happened at the same time anyway - I am just not a person who is very good at waiting, so I went after it with a lot of energy, and a sense that time was of the essence.<br />
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Alex and I both felt very strongly (and still do ) that we wanted to do everything we could to benefit others - and yes, of course, we were hoping that it would make a difference for us. But we were very aware that this would be a double-blind study - meaning that half of the participants would get the placebo, and half would get the real thing, and we would not know which arm we were assigned to.<br />
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This is a drug with really only two side effects. The first doesn't sound like much - the need to urinate more often and a stronger more urgent need to urinate. Okay - not easy, especially since Alex's dementia has made surgical intervention for enlarged prostate too risky.<br />
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But here's the second side effect - methylinium is an ACTIVE ingredient of this compound, and it is a vivid blue dye. Everything coming out of Alex would be a BRIGHT blue green which permanently dyes all kind of surfaces. Very special.<br />
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People asked me, "What about the placebo?" Well, if we were on the placebo, the fake compound would contain enough blue dye to have the same effect so that no one would be able to tell who was in the control group. <br />
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As we got through our learning period being on the drug, we were finding splashes of blue EVERYWHERE in the bathroom. I joked with Alex that when he went to public restrooms, he should just tell people he was from Venus. But it was Laura who really nailed it when she said, "It looks like a Smurf exploded in our bathroom," and that describes it better than any other image I could give you.<br />
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When we visited people, I DREADED his using the bathroom - I was horrified when I saw white rugs or old (and therefore much more likely to stain) toilets in people's homes. I swear to God, this stuff will permanently dye some toilet seats in about 2 nanoseconds. <br />
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As far as bedding and underwear goes - well, let's just say we keep trying our best. Supposedly, this stuff will lift with ascorbic acid. Yeah - kind of. Sometimes. In my darker moments, I would think, "If we are going through all of this and I find out we're on the placebo, someone will pay!" <br />
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But look - when you are faced with hopeless situation, you just learn to get creative. We got a fancy Japanese toilet seat that has a rinse and dry feature, we put protective shields on the bathroom walls, we found ways to BOOST the ascorbic acid, and we learned to be very open with people about this so that they would understand. And we learned to accept the fact that by this point in time Alex quite literally has blue balls.<br />
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It is still a very exciting adventure. We know that we are lucky to get to play any kind of role in this. The research team that we work with is simply phenomenal - some of the kindest, most capable, most supportive and most responsive people I have ever encountered in a clinical setting. They are full of sound advice, they are sincere advocates, and when things get rocky, they understand and listen and offer whatever comfort they can.<br />
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Sometimes out of nowhere, Alex will say, "When are we going back to Mayo?" and I know that's it partly because he likes seeing everyone there , and partly beause he hopes they're going to "fix" the blue thing.<br />
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Here's what I could never have been prepared for. <br />
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Not knowing whether you are on the "real thing" or not, and not knowing whether it is working or not can make you a bit insane. Any good day, I would be CERTAIN we were on the drug, and that it was working. Any bad day, I was sure we weren't. I would watch Alex like a hawk for any sign of deterioration or improvement, and when he would laugh at a joke or volunteer some information, or connect some dots, I was SURE the cure was working, and I would make sure that life woudl be full of actitives that would almost certainly re-build Alex's brain. (Sounds stupid, I know, but hope is a powerful drug, too).<br />
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At the end of the year, we were offered an extension - meaning that we could stay on until they decided whether or not to make the drug available. We are now on the real thing for sure, and we still do not know whether we were during the first year. At first, I thought that would trouble me. It doesn't anymore. It's just part of the deal and part of what we signed up for.<br />
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Recently, it is clear that Alex is really losing ground.I am absolutely unable to gauge whether the drug has helped Alex or not. I have no way of knowing how Alex would be if we hadn't done all of this - and no one call tell us that. But if this drug does benefit some people, then I will be thrilled that we played a part in it and I have started to think of every single blue spot as a little victory for all of us.<br />
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This fall, the drug sponsor will publish their findings, at least that's what we think. If it fails (and it well might) I can only imagine how difficult that will be for everyone who has played a part in this.<br />
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When I see things on the web that say things like, 'Doctors don't want you to know that this one simple thing will cure dementia," I could scream. What I see when I go to Mayo is a team of people who have watched drug after drug fail, and had to be there for all kinds of people like us who showed up with hope and enthusiasm and came up empty. I can only imagine the rejoicing they will do when this disease gets cured - and there is no doubt in my mind that the day is coming, even if it might be too late for us.<br />
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Knowing what I know now, would I do it all over again? Unequivocally "Yes!" This is one of the only ways I can think of to try ot make some good come from this - and if ANY of you are offered a chance to be a guinea pig, I will tell you that you have nothing to lose. Go for it! If you need advice on removing blue stains, just ask!<br />
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com4tag:blogger.com,1999:blog-1083706091370906321.post-83448292720821712102016-06-14T15:49:00.000-07:002016-06-14T17:00:43.739-07:00Father's DayOur wonderful daughter Laura, was born on Father's Day in 1991. If I close my eyes, I am pretty sure I can remember every minute of that day - but most especially I can remember how thrilled Alex was. He was a pretty reserved guy in general, so to see his excitement, and hear him exclaiming, "Ooh, Ooh Ooh! It's a girl!" was beyond wonderful at the time, and still is wonderful.<br />
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Laura's middle name is Alexandra. She and her dad have always had a close and sometimes contentious bond - and they have a lot in common. When she was younger, I worked part-time at home - and when she was a bit older, we reversed roles, and Alex worked part-time so that he could spend more time with Colin and Laura.<br />
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He would tuck her in by singing some of his mother's favorite songs from "The Old Country," and would read to her for a very long time. Bedtime took forever at our house - but I know that's partly because everyone enjoyed it so much.<br />
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He helped her learn to read, attended very single piano and violin recital she ever was part of, drove her to lessons, taught her to ride a bike, and encouraged her to climb higher than common sense would dictate when he took her to the jungle gym at the park.<br />
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He was a rigorous (but fair) editor when he was proofreading Laura's homework - and now that she is working on her college degree, she knows that her facility with reading, writing, and speaking is due in large part to him.<br />
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Laura lives at home with us while she goes to school and works pretty much full-time at a nearby vet clinic. When Alex was first diagnosed, I was very concerned about her staying with us through all this. I wanted to be kind, but I really thought that the best thing in the world for her would be to detach a bit from the home scene and find her own place. I was really concerned about the affect this disease would have on her and her brother.<br />
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Just a little medical fact here. Frontotemporal dementia strikes at an earlier age than Alzheimer's with a typical age of onset is somewhere between 45 and 65. This means that a lot of kids Laura's age and younger are dealing with this, too - and it is hard for me to imagine how some of the very young families deal with this. We are fortunate that Alex was able to compensate so effectively through the earliest symptoms so that there is a long store of happy memories to sustain us all.<br />
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Anyway, when Alex was diagnosed Laura was adamant that she was going to stay close through the whole thing, and that there was no way she as going to move out. She has been a wonderful help to me in matters small and huge. She has had patience and stamina and kindness far outside of what anyone should expect of her. And she has gracefully taken on some of the unpleasant caregiving tasks with her own special style and sense of humor. And in that, she is just like her dad, who is steady and honest and kind.<br />
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But she doesn't call him "Dad" anymore. She just can't - and I do understand, because he doesn't act like her dad anymore. She knows, and I know that he still loves her - but emotional blunting and lack of empathy are a huge part of this disease, and that has made him very hard for her to reach.<br />
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And as these two holidays approach right on top of each other, I need to say that special occasions are TOUGH! I think that's probably true for most families that are trying to hold it all together. No matter how hard we try, these occasions serve to remind us of how thing used to be, and how much they have changed. <br />
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Trying to replicate Thanksgiving and New Year's and birthdays (and Father's Day) so that they will be the same and have the same meaning as they used to is truly a terrible idea. We have had some pretty bitter realizations while trying too hard to hang onto the past. Better to think of different ways to celebrate and look for new ways to be together and love one another.to celebrate. So actually, when you run into people like us around the holidays, tread lightly. It can be a pretty sad time!<br />
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So this year, when we do the annual birthday dinner for Laura, Alex will not be joining us. It feels sad and shitty - and we hate leaving him behind.<br />
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But - noisy restaurants are stress-filled places for Alex. His entire body projects the high anxiety he feels in these places. We need to select the time and place carefully, alert the wait staff about some of the odd behaviors he might exhibit, and have a clear bathroom strategy. We also have to ready to leave early.<br />
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None of this sounds like a good birthday dinner for Laura. So instead, we will go out for dinner without him, Laura will let herself get a bit tipsy, and we will have cupcakes at home after the dinner. And that way, Alex will get to celebrate in way that will feel good to him, and Laura will get a party.<br />
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I know it will be sad. It is just another marker and reminder of something that Pauline Boss calls "ambiguous loss -" where the person you love is there, but not there. My biggest hope is that instead of dwelling on that, we will just get together in bits and pieces to make a glorious whole, and celebrate that we are all here now.<br />
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And that each and every one of is just right - exactly as we are.<br />
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com4tag:blogger.com,1999:blog-1083706091370906321.post-58827882103614056442016-06-12T23:34:00.001-07:002016-07-01T23:14:18.846-07:00Taking Care/Giving Care and Sharing the LoadAfter Alex was diagnosed, we tried to lead as normal a life as possible - but it wasn't long before it was pretty clear that we would need more help in getting through a day. The limitations started to get clearer. The future got scarier. <br />
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We joined a support group sponsored by the Alzheimer's Association. This turned out to be a lifesaving idea. <br />
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Initially, the group format provided a general education in dementia. This was not easy stuff to hear or talk about, but it gave us some solid knowledge, some plans, and some inspiration.Most important of all, it gave us a group of new friends who understood us. Long after the formal sessions ended, our little family gets together once a month. <br />
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Caregiver support groups are what you mostly hear about, but our group consists of all of us, because we are all in the soup together.<br />
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So suddenly, in 2013, I guess I stopped being a wife and started being a caregiver?? I'm sorry, the three-year old in my head does not think of myself that way. I find the term limiting and an unhelpful simplification, and I think that with all the other identity shifting that is going on, it can feel pretty isolating. I don't mean to complain exactly, but by separating the world into caregivers and dementia sufferers, it seems like we're letting an awful lot of people and institutions off the hook , and being a little less than kind to "care partners" and dementia sufferers alike.<br />
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I could go on and on - but I won't. Except to say that I have pondered the words caregiver and caretaker, and wonder why we use one for people and one for lighthouses..It's something I'd like to talk about with Alex.<br />
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The people with dementia in our group are a pretty sterling cast of characters. The "impaired" friends include: a retired dean of chemistry from Northwestern who is an articulate and passionate advocate for government policy change related to these diseases, a management consultant and non-profit strategist (and French horn player), a retired lawyer, a business owner, a schoolteacher who helped support an autistic son, and a finance wizard (and winemaker). All have families who rely on them and love them, all are busy LIVING.<br />
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They did not stop being important or interesting people because of their diagnosis, and their caregivers did not stop being human beings with complete lives of their own. They are wonderful friends. <br />
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When we get together, we laugh and cry together and talk about our families and politics and all the other little and big things. No one is ever embarrassed , and we all understand when someone needs more time to answer a question, or a change of venue, or just a hug. Oh, and some of us sing together - more about that later...<br />
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At one of our earliest sessions, one of the other "caretakers," Jim, was talking about his autistic son, John. Jim said, "When John was diagnosed, we realized that we would be able to travel and do everything that we had ever done before - only we would have to do them differently."<br />
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That really hit me. It's funny, because Jim doesn't even remember saying it, but that way of thinking and framing our situation became my mantra. I began to look for ways to make it possible for Alex to keep doing all of the things that give his life a sense of meaning and purpose, and try to become as light-hearted and resilient as possible.<br />
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I do NOT want that to sound lofty. It seems to me like a completely natural reaction to this disease, and frankly, I simply do not understand what else people would expect us to do. This is not to say that I had or have any illusions about where we are heading with this. Only that we made a choice to live consciously with this disease, to face it head on and to continue to seize every good moment, and try to find ways to work around the crappy ones.<br />
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We asked Alex's best friend Craig, to hang out with him during the day when I was at work. Craig has been an absolutely critical piece of this puzzle. He was sick of his unrewarding job, I needed the help and I needed to keep working. We embarked on this idea wondering if it could work, and left lots of room to learn as we went along.<br />
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For nearly 3 years, Craig has helped Alex exercise, chauffeured him around, drawn with him (more about that later, too), taken him to chorus rehearsals, helped him get some household chores done, and taken him to a woodworking shop where they build beautiful tables and benches together. Knowing that Alex is cared for by someone who cares so much about him makes it a million times easier for me to keep working and helps me to be a little bit fresher when I am home with Alex.<br />
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We are grateful in countless ways for the steady patience and friendship he and his wife, Chris, graciously offer up.<br />
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I am making this sound way easier than it is. It is a lot of work to put the plans together, and things can and do fall apart without warning, but I am absolutely sure this is how Alex has been able to do as well as he has for as long as he has. It would not be possible without all of the wonderful friends and family who help, and without the compassion and flexibility my office colleagues have shown as we figure it all out.<br />
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And just because I am feeling cantankerous tonight, I want to say that politically and socially it is simply ridiculous that each family that takes this journey has to improvise like this. I simply cannot tell you how many people have told me, "Remember to take care of yourself. Self care is important." <br />
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Well - if there were more CONCRETE support systems in place for all of us, caregivers might actually manage to find the time for themselves. The emotional toll, the perpetual planning and managing are not easy to manage even with a lot of support. And along with everything else that keeps caregivers up till 3 in the morning, worrying about how to pay for it all gets front and center -even for those of us who have nest eggs to draw on.<br />
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If I had more time to advocate, our legislators would be heartily sick of hearing from me. I am guessing that's why more hasn't been done - because the people who need the help just don't have room for one more thing. But also because pitying looks are easy to give - and actual money and infrastructure and policy take time and effort. <br />
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So, we cobble it together - there are no easy answers. It is unchartered territory for each and every one of us - and I am beyond grateful for the many people in our lives, in and out of our support group, who "get it." I am certain that as my generation ages, and the staggering costs of this become clear, policy will start to change.<br />
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But all of that change has to start with softer hearts and open eyes and ears. I think that the shifting has begun - I think a new generation will not tolerate this way of managing these diseases. In the best world of all, these diseases will be cured and will no longer be taking their toll - but in the meantime, wouldn't it be wonderful if we came up with some new models and ways of helping everyone through this?<br />
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<br />DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com0tag:blogger.com,1999:blog-1083706091370906321.post-54114763468912399752016-06-08T00:01:00.000-07:002016-06-08T00:01:18.755-07:00A Little History...<br />
In the summer of 2013 my husband, Alex Houlding, was diagnosed with Behavioral Variant Frontotemporal Degeneration. This was a disease no one I knew had ever heard of. It gets lumped into a broad category that falls into the "other dementias" label at Alzheimer's get-togethers and informational sites.<br />
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We had known something was going wrong with Alex for a couple of years before the diagnosis. I have learned in the years since that it is not unusual for this illness to be misdiagnosed, and that was certainly the case for us. Cognitive impairment is not the first sign that something is going wrong. It is other things that define this illness in its earliest stages, and some of them are pretty weird.<br />
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Alex was losing things, forgetting steps in recipes, losing track of ideas and threads at work (not a good thing for a computer scientist), becoming less able to manage and focus on details, more aloof in conversation, more apathetic, He was getting sloppy - shaving poorly, not paying attention to his clothes or hair , and having difficulty reading maps and being geographically oriented when we travelled. He was not able to plan, not able to complete things, and strangely hyper-focused on other things, almost compulsively.<br />
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Many of these things might be signs of depression or "mid-life crisis." I made Alex go see his doctor and get an MRI. They reported that nothing was wrong, I was baffled, and I watched him get worse, and wondered why I couldn't get the doctor to take this seriously.<br />
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When we finally got to see a neurologist and then go through a neuropsych evaluation, the diagnosis was "mild cognitive impairment" with some unusual anomalies. When we finally got to the Mayo Clinic in 2013, doctors started talking to both of us, and zeroing in on the exact things that had been concerning me.<br />
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When we received the awful news (and I can still remember how completely sickened we felt), we asked, "What next?" The doctor shrugged her shoulders, and said, "There is no treatment. We follow you and you come back in 6 months." She gave us some pamphlets, listings of websites, and a DVD from a conference on TAKING CARE of someone with FTD. I immediately wanted to run the DVD over with my car, and I still have not watched it to this day..<br />
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We were both completely stunned - and Alex just said, "Boy you're really in the soup now. So we did what any right-thinking humans would do - we went out for an over-the-top dinner, drank too much wine, and came home and hung onto each.<br />
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Most people with bvFTD have NO insight into their condition, and this is certainly the case for Alex.. The "in the soup" comment was one of the first and last times that I was certain Alex had any idea that something was wrong. People like to tell me that's a blessing. When they tell me that I feel like punching them.<br />
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THERE IS NO "STILL ALICE" WITH THIS ILLNESS <br />
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Of all the things I want to say on this blog, one of the most important to me is to point out that we are not dealing with Alzheimer's here. Continuity of personality just goes away, and the existential questions we face with this are almost always raw and awful.<br />
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I could catalog all of the changes, and sometimes I do in my head, but really, it just makes things worse. It's like forcing yourself to watch a video of a funeral over and over again. But before I can even talk about what we do every day, and how we do and don't manage, I really need to write about the Alex that we all loved so very much before Alex 2.0 emerged.<br />
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When I met Alex, we were both working in the information systems area of B. Dalton Bookseller. I was just finishing up a degree in humanities, so naturally computer science would be the logical career choice for me. Alex had been raised in England, had a charming semi-English accent, a PhD in English (so computer science was the logical choice for him as well). I was the babe reading Proust on my breaks, and he was the hunk who could recite Wordsworth poetry. He was also training to run a marathon.<br />
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It was kismet. We "dated" for about 3 weeks, and moved in together after a month.<br />
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He has been my truest and closest friend, my most trusted confidante and advisor, the analytical balance to my emotional rants, the very involved father to our two children, one of the wittiest people I have ever met, and one of the most remarkably curious people I have ever known. No matter what we have gone through in our lives together, we had so many interests in common, and so many things that we loved to do together, that we always had great things to talk about and share. We went to the symphony together, we went to the kinds of foreign movies many people go out of their way to avoid, we travelled all over the place, hiked and biked, told stories, cooked and ate amazing dinners together, and just plain loved being together.<br />
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Alex was always more reserved and introverted than I, but he was a true romantic - writing and reciting poetry, tearing up at sad movies, and relishing every single moment of his children's growth (okay - maybe not EVERY moment of the adolescent years - but you get the picture). <br />
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He was physically graceful, a committed athlete, and self-disciplined to an extent I could barely comprehend. He was a speed skater, a cyclist, a singer, a brilliant thinker, a tinkerer, and a person who simply loved digging into the details of things to understand them. He was a very good public speaker, had been an actor in college, and he swore like nothing I've ever heard before when he was behind the wheel of a car. <br />
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When we travelled, we almost always argued about directions. He was almost always right. <br />
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Only the faintest remnants of these traits remain - but these remnants are what we work with every day, and try to nourish and promote every single day. Along the way, we have had moment of almost unbearable pain (sure - everyone says that, I know) but also some crazy days, some good laughs, some complete surprises, and a lot of love.<br />
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So the question for me is, "When is Alex no longer Alex and how on earth do I learn to let him go?" And if what we do and what we have learned can help one other person who is trying to come to terms with this disease, I really want to offer our example as a "teaching moment," that is perhaps a little more palatable and immediate than a DVD you get at the doctor's office... <br />
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DAWN KUZMAhttp://www.blogger.com/profile/02711462510412537726noreply@blogger.com8