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!