Wednesday, January 16, 2019

Looking Back and Looking Ahead

Just a few minutes before midnight that marked the beginning of 2019, I fell down a flight of stairs.

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.

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.

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.

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.

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.

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 of the best New Year's Eves I have had in some time!

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.

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.

 I meditated on my own upstairs, looking out over Mt. Hood which literally glowed in the sunlight. 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.  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.

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.

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."

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.

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.

But like Alice who had to fall upside down to find herself, I think that I will enjoy the journey.

Saturday, August 4, 2018


Most 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.

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.

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.

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.

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.

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.

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.

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.

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:
You are rest, and gentle peace 
You are longing, and what stills it 
I consecrate to you, full of pleasure and pain, 
As a dwelling here,
My eyes and heart. 

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.   

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.

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.

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. 

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.

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! 

Friday, June 1, 2018

Breathing Room

THIS 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.
 And just like that, things change up a bit.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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."

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.

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!



Wednesday, May 30, 2018

Sand Dollars

Living 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.

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.

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.

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.

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."

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.

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.

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.

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.

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.

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.

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.

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.

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.

Sunday, April 8, 2018

All Those Naked Ladies

Unbelievably, 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.

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.

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!"

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.

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.

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.

And this brings me to the naked lady problem....

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.

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.

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.

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.

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.

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

Here is a brief sample for your consideration:
Notice the tattoo..

Like a classical drawing class..

  Great pony tail - and I like the perspective. 

These are numbered! Alex was always precise.

The hands??? Hmm??

  Your majesty? 

I don't know who this is, but it's sweet .

Who let Homer Simpson in here?

Self portrait amid naked ladies?? 

A breast become a bicycle wheel?

There are many more, and these are just the ones I parted with.

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!

Saturday, February 17, 2018

Houlding On & Letting Go Inc

The 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.

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.

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).
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!

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.

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!

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.

Sunday, January 28, 2018

The Gift

Just 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.

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.

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.

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.

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.

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.

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:

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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."

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.

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.

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.

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!