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!

Tuesday, September 5, 2017

Mixed Blessings

The week before last, my son, Colin, and I flew out to Boston to attend the memorial service of Alex's youngest brother, Richard.

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.

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.

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.

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.

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.

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. 

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.

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. 

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.

Here's where I think the REAL blessing is.

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.

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).

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. 

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.

It might not seem like a lot - but right then, it seemed like everything.

Sunday, March 19, 2017

How 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.

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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!)

Am I glad we moved him? No.
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.

On the dark days, do we all wish we would all be released from this drama?   Yes.
Do I want him dead? No.
Does he know what's going on? Yeah - No. Sometimes. Mostly not.
Is that a relief? Oh no, not at all.

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
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.

Friday, November 11, 2016

The Art of Letting Go

These last weeks have been such a jumble.

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. 

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.

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.

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.

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.

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:
"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?"

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.

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?"

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.

And now Alex is in hospice, and these questions are no longer theoretical for us.

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.

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.

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.

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.

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.

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.

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?"

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.

But signing that paper was just one more step in the journey that we don't want to take.

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.

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.

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.

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.

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....

Tuesday, October 4, 2016


This 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!

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?

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).

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.

Nancy Carlson, the children's book author (  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.

As I said, we are lucky by comparison.

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.

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.

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!

He also doesn't seem to understand personal space any more. Awkward...

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.

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:

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!

I don't know where the cigar came from....but still...

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.

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.

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.   

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.

And once again, I am lucky, because if he's 42 then I just turned 30.