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.