It’s been 7 or 8 weeks since I last wrote anything here. Clearly I have fallen short of trying to post something a couple of times a month. I’ve been blog-quiet for several reasons, none of them intentional. For starters, I’ve thought a lot about how public I want to make Marcia’s progression. Maybe better said, I’ve thought a lot about how private this should be. If the blog is meant to help others, I probably can’t abandon the facts. But is that helpful, or depressing? If it’s meant to provide information to those who are familiar with our situation, can I do that without too much detail? I haven’t firmly settled on how I feel about this. Secondly, I just haven’t been able to find time. Is the last month or so a new normal or is this a seasonal peak? I’m sure it’s both!
My brother Greg sent me an article a few weeks ago about a family that has an unfortunate history with Alzheimer’s (several family members have or passed away with it). The article was inspiring in that they have raised over $5million dollars for Alzheimer’s. We are just $4,970,000 behind this family, but we have our first 5k fund raiser coming up in June (I’ll write about that separately)!! It was also surprising in that there is a particular gene whereby every family member is stricken at the exact same age (wow!). And the article ended with the importance of the caregiver taking care of themselves (not something I haven’t heard before). The facts suggest caregivers are susceptible to health issues due to stress over many years. I bring this up because over the last month or so, there have been times where I have felt a level of stress I’ve not felt before, and it’s not one thing I can identify that changed. It’s the whole package of kids, work and Alzheimer’s. Interestingly, I love the first, like the second, and hate the third!
As I write this tonight, I feel great. I’m taking the next two days off and tonight I’m just not focusing on work. I feel better already. So it’s work that’s causing the stress! Well, not exactly. It’s just that I don’t have to get up tomorrow at 5:30, I’m not checking email or thinking of the next deadline, project or issue tonight and that brings some relaxation to the evening.
For me, the stress I’m feeling is the constant, overwhelming number of things I have on “to do” lists I keep on my iPhone, the back of envelopes or scrap pieces of paper. They are things that occur to me at 4:00 in the morning, in the car, or anywhere really. Sometimes it just feels everything is due, or should be done, today. Until now, I’ve been comfortable getting done what I can, and not stressing about the things I don’t. Lately it just hasn’t seemed like it’s okay to not get something done, whether it’s our taxes, planning college visits for my daughter, Riley, eye appointments, doctor’s appointments, soccer/lacrosse games/practices, birthdays/anniversaries (including Marcia and my 20th) or anything job related. And there is Marcia.
Marcia is still amazing, friendly and trying so hard. She is just more dependent on me than she was 6 months ago. She will soon want to run outside when the weather is better (it snowed today) and that makes me nervous. Riley recently stopped her from taking a hot pan out of the oven without oven mitts. And trying to understand what she’s trying to communicate can be an exhausting effort. Lately, she might just point at a blank sheet of paper and I have to start guessing without any verbal cue at all. Where do you start?
She doesn’t yet need to be supervised all the time, but I can see that time is coming. In the last 48 hours I’ve seen her upset at not being able to download music or get the television remote to work. If you’re one to look for humor in any situation, here it is. I couldn’t download the music or get the remote to work either. In my defense (I’m stretching things here) something is “up” with our remote controls and it doesn’t turn the TV on or control the volume. Just changes the channel (on two of our TV’s). The downloading music, it seems, was a temporary computer issue, since it worked fine today. The difference between Marcia’s inability and mine? I found the alternate way to turn the TV on and adjust the volume (remember? TV’s actually have power and volume ON the TV). Marcia thought it was Alzheimer’s that prevented her from doing simple tasks. And she didn’t try the TV route. She let it upset her, and both upset her a lot. I’ll get the remotes fixed too. Someday….
I know our lives will get harder and more stressful. Take a day off, go for a run, watch your son or daughter play a sport, listen to a comedy channel in the car or read the bible. They bring back an old normal, make me laugh or make me think.