This one is a tough one for me to write, but after a little incident we had tonight, I realized that I need to be writing about this aspect of my life because as tricky of a subject as it might be, it’s part of who our family is. My Gram, who lives with us, has dementia. She has for some time now, and I would estimate we are in the early-middle stage of it. When she first moved in with us, we started noticing small hints of dementia, little forgetful moments or times when she would get confused and try to hide it. Over time, it’s grown quite a bit, but it’s been a gradual process. Looking back I can see a huge difference between her mental state 3 1/2 years ago and today, which I think is hard for us all to confront sometimes for different reasons. But Gram’s mental decline has been slow. I’m honestly not sure if that has made it easier or harder.
In case you don’t recognize it, that photo up top is a few cucumber pieces hidden inside an old fig bar wrapper, which was hidden inside an old baby wipe. I confiscated it from Gram this evening, after a lengthy back and forth of, “Gram is that food?” and “no! it’s not!” (Spoiler-alert: it was food). Food hoarding, you see, is a common trait among dementia sufferers. It’s a way that they can reassert control. For Gram, her hoarding of food in her room has increased with her dementia, partially because she is no longer able to cook for herself or even make herself a sandwich. She often tries to stockpile what is left over from her meal, wrapping it in a paper towel or wipe and attempting to discretely put it in her pocket or tuck it between the pages of her crossword puzzle book. As frustrated as this behavior can make me, I need to always check my reaction and remember that it comes from a place of confusion and fear in her. She is hiding food because she is concerned that the next time she’s hungry there won’t be any, and with Gram, who finds asking for help very difficult, that’s a big worry in her mind. She hates, hates, hates having to ask us for anything, even the things she clearly needs help with. And she hates that she needs help getting something to eat, which is a very basic need.
I’ve found that her hoarding of food increases on days that I haven’t been as conscientious about popping in with small snacks throughout the day. Today was one of those days. I was preoccupied with a sick kid and trying to get a few projects done, and Gram, quiet in her room, didn’t make it onto my radar often enough. Now, I’ve been caring for her for long enough, that I’ve learned to give myself some grace when I realize I haven’t done all I could or missed something she needed, in the same way I do when I have a sub-par parenting moment. And praise God, I have enough of a support system through all of this that we can have a little chuckle as I make a mental note of healthy snacks that are easy for her to eat and are already in the house for tomorrow.
Dementia care is rough, it’s rough on the caregiver, but it’s also incredibly rough on the person experiencing it. I can’t imagine what it must feel like to lose so much of yourself, to have to be so reliant on others for all of your needs, to forget important people and events. But I can always, always strive to care for Gram with the love and respect I can give her, and I can uphold her dignity even as I gently have to remove the cucumbers from her room for her own safety.
I’ll try to write more about the elder-care aspect of our life for those curious minds who wonder if they have it in them to take on something like that (you do!) and for those who need to know that someone else out there is struggling and striving in the same ways.