Really, there’s no way to describe what life is like here. I’m not complaining because I have a fantastically blessed life. Overall, my life is so wonderful. However, there is reality in the fact that Jim & I are caregivers. And care-giving is hard. Really hard.
Most days, we maintain a super-rigid schedule because change is the enemy. There must be a standard wake-up time, breakfast period, wash and dress time, and then she switches between TV and crosswords or just crosswords. Jim tries to encourage her to play the piano multiple times a week and he has noticed days with piano-playing are days when we are engaged with her longer.
Because I work from around 7:30-6 PM most days, I don’t get a ton of interaction time and I typically see her after sundowning begins. For those of you unsure what sundowning is, it’s the period of time where as the sun goes down, the patient becomes more closed-off and quiet. Some Alzheimer’s patients sundown in an almost catatonic state. Not mom, but those hours past 2-3 PM are “iffy”. Sometimes we have her, other times we have someone I’m not familiar with.
There have been days where dinnertime is wrought with silence, broken only by Jim cracking a joke or two…sometimes she laughs, sometimes she doesn’t even hear him. I’ve even had times where I have tried to strike up a conversation and she just stares at me as if I’m invisible.
When I think about her memory issues as related to her age, I often wonder how bad is it? I mean, really, I forget a ton and I’m only 54. So, how bad is it that she forgets stuff, right? The key is not forgetting things. The key is, can she care for herself? No. She can’t. She can’t drive anymore – she started getting very lost about five years ago although she was never Magellan to begin with. She also is not good with remembering general health and welfare items. That’s why Jim and I are here. We ensure she is eating, drinking water, and taking care of daily standard tasks so she is in good health. And by the way, the doctor says she’s in good health (she went for her semi-annual physical yesterday).
We’re trying an experiment this year. We’re trying to celebrate her 90th birthday (yep…she’s gonna be the big 9-0 on April 15, 2018) with a bit of fanfare. We’ve asked people she doesn’t even know to send a birthday card to her. We’re collecting them here on my desk and on her birthday, we are going to surprise her with (hopefully) a huge stack of cards. She loves greeting cards! (If you want to be involved, you can comment on this blog post with your email address and I’ll email you her name and address!)
So now you know a little bit about what it is like. This is by far not the extent of life here in the sunny Carolinas. But it is a huge part of my life, and my life with Jim. We are here for the long haul. Not looking for praise, just tellin’ it like it is….