How do you find balance while caregiving?

Real quick.. my husband has had a sleep disorder forever before MCI but when he got Covid towards the end of 2023, I had to set up my own space in our one spare room - well, I'm still there and loving my own space and own bathroom! It's my sanctuary from the storms. Covid was a blessing in that way. His brother and wife have had separate rooms & bathrooms forever. My sister and her MCI husband had separate rooms & bathrooms. Our daughter's in-laws had the same arrangement so it's not at all that odd, really. And as we age we both need the bathroom more - haha, so having our own is primo. My husband has not complained and seems to enjoy his space as well. Only thing, he is having potty issues now and when I went to replace his toilet seat, I found a mess which I quickly disinfected and then I checked his bed 🙁 He had a white mattress cover over the sheet and the white cover was beige with dried blood spots from his easily bruising thin skin - I tried bleach in the washing machine to no avail and had to toss it. I'll have to become his cleaning lady now on top of his mother 🙁 It was a hard week - thank God for my sister and her patience with listening and a good night's sleep, I'm back on track and past that horrible tendency to shut my brain down. That shutting down feels like a door closing on my positive attitude and I think it's the evil one for sure taking advantage of a vulnerable moment - but by God's Grace & Mercy I shook it off (literally, I had to shake my head!!) - things are much better today. God bless us all as we navigate each hour sometimes. hugs to you, Lori

@bayviewgal Please do not blame yourself for this horrible disease. You did the best you could and we as spouses of a cognitive impaired spouse need to be so much more involved with everything. We have to take care of our own level of patience and be kind to ourselves because we are the ones doing it all and they need us there so we need to take care of ourselves in order to take care of them. It's tough, it's sad and every couple has to find their own way to get through it. No guilt, no blame - only job well done good and faithful servant.💕💪☮️

I'm not sure we ever find balance in this disease. It's mind-boggling to me at times. Sitting at dinner, my husband could converse like his "old self" with the restaurant owner, it was like an "awakening" and I was amazed to see and hear him. Then fast forward the next day, he was back to trying to work through something, having difficulty in sequencing his thoughts, in his mind and on paper, with somewhat of a blank stare that day. Certainly not the same man that was sitting at the table intelligently conversing with the owner. It's just so up and down, to where one minute you think, he's back, and then he's gone. That book "Loving Someone with Dementia," about ambiguous loss and just working in "gray matter" vs. black and white, is dead on. Now how does anyone find balance in that? I guess...one day at a time. Happy Sunday caregivers.....Best, Karla

@kjc48 I know what you mean, exactly. I wonder how, somehow, he can talk with his daughters, so logically, so that’s why they don’t believe he is having the problems he does. A bit later, he’s confused, again. Why ? !

@dederickve I know......maybe the pathway to the brain opens up when he engages the long-term memory of his daughters. It's all so hard to figure out. And you are correct. At a time, we need support from the family, they don't believe it and/or are in denial. Best, Karla

@dederickve
You asked why he can act logically around others and around you his issues show up.
One idea I read about in a dementia book I am reading is called, 'cognitive masking'. This is when the person can't access the info that was stored in their brain, so they basically re-route and the brain goes elsewhere to retrieve the data they seek, so... doing so let's them mask their issue so they can function using info from a different part of their brain. This requires a lot of brain power and it's mentally exhausting, so since he feels safe with you, he can let his guard down and no longer have to do the heavy lifting of masking his issue.
I may not be explaining it too clearly, but one analogy is when Porky Pig stumbled over a word he could not get out of his mouth, he would substitute another word or phrase to communicate his thought.
Cognitive masking is done by intelligent people with memory issues, so they can hide or mask their deficits for awhile.
Big hugs to you. 🫂