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

Mischief

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 (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.

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.

Monday, September 12, 2016

Giving it a Rest

Today 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.

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.

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.

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.

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.

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 changed - it's a tandem bike now, not the custom 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.



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.

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).


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.

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.


Wednesday, August 3, 2016

Unplanned Lessons

The 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.

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.

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.

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.

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.

Really, trying to write all that stuff turns into a whole bunch of clich├ęs about never taking anything for granted, being grateful for the small joys, blah blah blah.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.


Monday, July 11, 2016

The Changeling

It'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).

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. 

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.

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.

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."

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.

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.

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.

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.

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.

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..

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.

Is he happy? I think so. I think he is not unhappy.

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. 

Is he still a good person?

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.

Carpe diem!


Wednesday, June 22, 2016

Becoming a Smurf for Science

Because 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.

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.

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.

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.

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.

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.

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.

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.  

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.

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. 

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!"

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.

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.

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.

Here's what I could never have been prepared for.

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).

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.

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.

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.

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.

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!


Tuesday, June 14, 2016

Father's Day

Our 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

And that each and every one of is just right - exactly as we are.



Sunday, June 12, 2016

Taking Care/Giving Care and Sharing the Load

After 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.

We joined a support group sponsored by the Alzheimer's Association. This turned out to be a lifesaving idea.

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.

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.

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.

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.

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.

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.

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...

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."

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.

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.

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.

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.

We are grateful in countless ways for the steady patience and friendship he and his wife, Chris, graciously offer up.

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.

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."

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.

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. 

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.

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?



Wednesday, June 8, 2016

A Little History...
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.

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.

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.

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.

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.

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..

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.

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.

THERE IS NO "STILL ALICE" WITH THIS ILLNESS

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.

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.

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.

It was kismet. We "dated" for about 3 weeks, and moved in together after a month.

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.

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).

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.    

When we travelled, we almost always argued about directions. He was almost always right.

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.

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...