It’s been more than two months since the Branchburg Race Against Alzheimer’s, and almost that long since my last blog entry. I’ve had many reasons and events to blog recently. The truth is, it’s been harder to find the time to do it. Work and my kids’ lives have been a constant for me, but caring for Marcia has reached a stage where changes in her schedule are needed. It’s been two and a half years since Marcia’s diagnosis, and there have been inevitable changes. But progression also results in milestones, and milestones sometimes result in exponentially more time consuming activities. A year ago, we were dealing with Marcia no longer driving. This summer, Marcia has given up running (the Branchburg Race was her last), and now we are seeing the end of her career as a fitness instructor.
At the end of July, when Marcia was in Maine with her family, both HealthQuest and the YMCA decided they couldn’t keep her on as an instructor and let me know that she wouldn’t be on the schedule immediately at the Y, and after the August session at HealthQuest. Both have been incredibly supportive of Marcia and stayed with her as long as they could. But there are liability issues, it’s not fair to those who take the class, etc…. The night Marcia got back from Maine, I broke the news to her. I’ll never forget the sound of her voice when she said “really?” Crystal clear, totally surprised, and completely heartbroken. I’ve seen Marcia cry from time to time since her diagnosis, but not like this. Tonight she cried herself to sleep. Not me though. I couldn’t fall asleep so easily….
As Alzheimer’s progresses, independence becomes more challenging. Every weekday Marcia has been getting out of the house to teach her classes, exercise and run errands with friends. She’s generally home alone for a few hours every day and since she’s not running/jogging, cooking, or doing anything else where her safety is in jeopardy, I haven’t worried too much about her being home alone to this point. Generally she watches TV, takes naps, does laundry, waters the plants and does other things around the house. Our concern about her being alone is growing, and now that teaching is reaching an end, I’m looking at options to fill the void teaching filled, while ensuring she’s safe. In late July, when Marcia was in Maine, I spent part of my vacation talking to people from a few home healthcare companies and visited two local Adult Care Centers. For now, I THINK the best option for Marcia is a few days a week at one of the Adult Care Centers. Marcia looks for every opportunity to get out of the house. She’s still very social and enjoys being around others, even if she can’t communicate as well as she would like. If she likes the Day Center, and as the need arises, increasing to more than a few days a week is an option.
Both Adult Centers think Marcia could be an asset to their daily exercise classes because she has credentials in leading active older adult classes (she lead a chair exercise class for senior citizens at our church for 15 years). She is also comfortable around older people since that has been her focus for 30 years with the YMCA. So I’m hopeful she will embrace Adult Day Centers and enjoy the company and activities they provide. There are many similarities in both facilities in that they are secure, relatively new, have many activities and a good staff to attendee ratio. One specializes in dementia, but doesn’t provide transportation and isn’t as close to home as the other one. While it doesn’t provide transportation, it’s on my way to work, but the hours of operation wouldn’t be ideal with my work hours. Based on what I saw, I would be comfortable with either for Marcia and will likely look at the one that’s a little closer to home and provides transportation, as that’s a nice option to have, even if we don’t use it right away.
What has kept me busy this summer, and my advice to anyone going through life with Alzheimer’s? Prepare for the next steps in the disease, while making the most of the time together in the current stage. Update your will and review it every few years. While we updated ours right after the diagnosis, I met with our attorney to further tweak parts of it a few weeks ago. Prepare for alternate care in home or outside of the home. We are looking at Day and Home Care options and both are recommended before the need arises. And now that her paid career is over, we are applying for Social Security Disability and how to activate our long term care insurance. These are things that aren’t fun to do, but lessen the stress of the disease on our family in the future.
While these are not the things I hope my kids write or talk about when they go back to school (they worked, played lacrosse, soccer, began training for cross country and fencing, saw every movie released this summer, etc…), I’m blessed to have had counsel of friends and family to help me through this stage. Family has been there to provide support from a distance, and my friend Jen put me in contact with a friend who is in the Adult Care business, who put me in touch with at least three others. All have been wonderful and freely given advice, contacts and treated me as if we’ve been friends forever. I’ve also received many encouraging calls, emails, texts, etc…. People are amazing, if you give them a chance to help. And I could NOT handle this without such support!