Caring for any sick person is hard, but the special feature of memory loss can make it even more stressful for Alzheimers or dementia caregivers! No real tips or ideas, just maybe a little real life talk to keep you going.
My Caregiver Story
If you haven't read any of my other dementia posts, here is a quick rundown of how our Mom got sick (she is actually my Mother In Law, my husband's Mom).
A while ago (maybe in her 60s) we started noticing that Mom repeated stories A LOT. But she was still super high functioning.
Then about a year ago (when she was 72) she really took a turn for the worse. We had moved back to Florida and she was living alone and still “faking it”.
But I started noticing that her house was getting messier and messier and she couldn't really manage her health (she started losing a lot of weight and not eating, although she could still put away the wine like a champ).
Then she fell, came to live with us for a few weeks, had a seizure and was hospitalized for a week for detox and a massive UTI (we have SO many UTIs now!)
After spending a couple of weeks in a nursing home, Mom came back home to live with us and that is where we stand now.
She Doesn't Remember But I Do
Here is the thing about being a dementia caregiver that is uniquely horrific.
She has done lots of things that are pretty bad. She has screamed at me in stores, said hateful things, scared my husband by screeching about not going to the hospital and taken LOTS of time away from our kids caring for all her medical and emotional needs.
She tells me that she doesn't need help on the regular, while not feeding or cleaning up after herself.
She doesn't remember how sick she was in the hospital and that the doctors said she can't drink anymore, so that is an ongoing theme of complaints.
And the worst part is … she doesn't remember most of that!
Because of the memory loss, all of that is gone for her and so she doesn't understand why I freak out when she won't eat, or when we have to leave her alone for even a little while, or why we object to her buying ALL THE PLASTIC FLOWERS (we just donated boxes of them a little while ago, but they are creeping back in!)
She would be horrified at some of her actions, but they are not even on her radar since they have been lost to dementia.
But I remember.
We adopted our kids from foster care and my little guy has PTSD (diagnosed) so I know a thing or two about how it shows up.
You might think it is screaming nightmares (sometimes) or rage, but mostly it is being stressed about everything all the time.
Being hyper vigilant in case something awful happens again and just waiting for the next horrific thing to show up.
The first time I realized that I was not “fine” was after Mom was horrible for about a week. She had a UTI and they were changing up her medicines, so it was not her fault, but that didn't make her any easier to care for…
And I wound up in the fetal position on our bed, sobbing to my husband that I couldn't do this one-more-day!
Of course I did do it one more day, in fact that was months ago, but I still have those moments of “what the hell is happening to my life!”
I KNOW, Mom is scared and doesn't understand what is happening (she has told us that).
I KNOW, I have to be stable and steady for her and my kids and help my husband deal with watching his Mom disintegrate before his eyes.
But right now I am not managing as well.
I am depressed and stressed and tired at a bone deep level.
I know I will snap out of it sometime, being a generally happy person, but this is hard and so darn sad.
So I am taking my own advice and have started a new art project, you might want to garden, attend church or go out with friends, but for sure find some way to do something that makes you happy today!
If you are looking for ways to feel better too here are 23 Fun Ways To Battle Dementia and Alzheimers Caregiver Burnout