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
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