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....