Not Every Birthday Is Happy: Alzheimer's SUCKS. Just wear the mask, ok?

Balloons make it a little better.
It's my sister Marian's birthday today. She's 61 and she has Alzheimer's. She's been impounded in a very nice memory care facility since March 10 without outside visitors. The good news: While nursing and assisted living facilities have been hardest hit by the virus, neither she nor any resident there has contracted COVID-19. The facility shut its doors early and has been very conservative in ensuring the health and safety of its residents. We are so grateful. We were even more grateful when they opened up a couple weeks ago for short, weekly, supervised visits. We get to see her again! But the good news ends there. 

Guess what? Alzheimer's sucks. Especially if you get it when you are 54. 

My sister Marian was diagnosed with Alzheimer's around 2015 or so. Early symptoms were troubling. Things just didn't seem right, she said. It was becoming harder to read. It was becoming harder to spell. And her normally perfect sense of organization was slipping. Otherwise, things seemed mostly fine. Her memory was ok, physically she was strong, and she was living independently. 

However, her colleagues noticed. Slowly, responsibilities were taken off her plate, and that was a big deal for an unfailingly efficient human resources VP at a major government contracting firm. Soon, though, there was a merger, and she was laid off. Unsure about her health, she moved back to Massachusetts from Maryland. Here, she settled into her new little home by the beach and enjoyed being around old friends and family. I loved having her back home, but much of our relationship was now about doctors and diagnosis. Through some very aggressive work on our part, lots of research, phone calls, and testing,  we finally got a diagnosis: Alzheimer's. 

I was flattened. But her? She took it with more grace than most people accept having to wear a facemask to buy potato chips at Walmart. She was upset, of course, but mostly, she accepted. She just shrugged and said, "Well, I just have to deal with this. May as well be positive." And she was. She hired her own caregivers, found support groups, and together we tied up her affairs. Anything she couldn't do, she asked for help with. We got everything taken care of; we even visited memory care facilities so that she could pick out the place she wanted to be at, once that day came. 

It came quicker than we expected. 

One year ago, she was doing more or less fine. The Lindsays made plans to spend summer 2019 in Ireland, as there was some business to attend to there; other sick people. I lined up nearly round-the-clock care for her here, a couple of generous, caring, wonderful people to do daily check-ins, and off we went. She was still living independently a year ago, and seemed fine, though we were nervous. But her daughter lived nearby. It was going to be ok. 

Until it wasn't. 

Just a few days after we left, I got a call. Marian had had a bike accident. A friend had taken her to church that morning and dropped her off at home. About an hour later, she got on her bike to enjoy the July sun and suddenly she was topsy turvy over the handlebars. She ripped up her knee all the way to the bone. Some kind people stayed with her til the ambulance came. She was confused. An ambulance took her to South Shore. Two weeks. 

From South Shore, it was rehab. Three more weeks. From rehab, it was clear that living alone was never going to be ok again. I was overseas and arranged for a short-term, one-month respite stay at the assisted living facility she had already picked out. We were going to see how it went. I ended up coming home early to help get her acclimated to the new place. Then, more stuff happened. A couple weeks later, our Dad died. Then my brother had a massive stroke and he, too, had to go into long-term care and has been there ever since. There's more, but that's for another day. Short version: For the first six months in memory care (locked facility), Marian was able to get out and about every single day with us, with friends, or with private caregivers. We all kept her as busy and stimulated as humanly possible. Even the staff there were a little floored by how much we took her out of the facility. We were all doing our best.

Then COVID-19 hit and the gates came down in a resounding thunk. Let me tell you, it got a little ugly for a while there. Depression, hallucinations, paranoia. Then, a thousand phone calls, and a medication change that turned things around almost immediately. Still, COVID-19 lockdown had not been very good for the infirmed. 

Many ask me "How's Marian?" I want to be positive but the answer is: Not good. She is not good. 

Despite great care, she really doesn't want to be there. She just wants to be home. She is lonely. She misses her friends. But she no longer knows how to open a door, how to take a birthday gift out of a gift bag, or how to brush her own teeth. She doesn't make a lot of sense when she talks. She says the words, but not in the right order and combinations. She doesn't really understand most of what we say to her anymore. She still recognizes me. She recognizes her daughter, mostly. She remembers our names, but today when we visited, she no longer recognized the names of two of her favorite caregivers, though with some help and coaching, she was able to recognize one... then after describing her a few times, she forgot what we were talking about. We called two of her best friends while we visited together; she recognized their voices but when we switched to FaceTime, she didn't know who that face was on the little screen. 

Major decline in just a couple months. Alzheimer's started this, but lockdown has nearly finished it. 

May I say again: Alzheimer's sucks. Friends, I do a lot of writing, but I don't write much about any of these heartbreaks because I feel like this time has been hard enough on all of us; why not be positive if possible? Also, it's her business. But today, I feel like it's all of our business. Lockdown is so hard on all of us, but these folks living in care facilities—these are the most at-risk among us and the hardest hit—even the ones who haven't gotten the virus. 

If people cannot wear masks and keep this thing at bay, my sister and other fragile people like her will waste away in these places, because they won't be allowed out. Mind you, she is lucky. She worked hard in the right field and as a result she can afford the best care, and I'm so happy for her. But it's not exactly Disneyland. And Disney World, which just opened in a state with record-breaking numbers of COVID-19 cases... well, that's not Disneyland either. 

Massachusetts is doing pretty well these days. I hope we keep it that way by continuing to maintain social distancing and wearing masks. If we keep it that way, people like my sister Marian and my brother David can see the light of day again some day. 

I think we can do that. Can't we?