Caregiver sundowning
Most caregivers for loved ones with dementia are familiar with sundowning and how things get worse toward the end of the day. We often experience what some call caregiver burnout or compassion fatigue. In my case, neither of those two terms exactly fits. I am not totally burned out, because I still function and get everything accomplished, I don't just give up. And it isn't compassion fatigue, because I still run the household and get everything done with a fairly respectable amount of energy and competence. I am not all that fatigued. Still, I am often irritable and tired of the repetition, looking for things in odd places, explaining who our children are, reciting what we had for supper, explaining for the 500th time how our beloved little dog passed away, repeating what day it is and what time it is, having no meaningful conversation, and on and on. So I think the term "caregiver sundowning" fits the most accurately. I would like to know if anyone else is experiencing this and if there are any solutions that work well.
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Looking for things in odd places. The wild goose chases have ceased to be amusing. Found two shirts rolled up inside of jeans hanging on a hook. I couldn't find my husband's hearing aids or wallet. I finally found his travel kit hidden under the bed with the aids, house key, wallet, a comb, his small family picture book and other treasures; he, of course, didn't do it. Sundowning is real; you can practically set your watch by it. The agitated pacing, the desire to lock the doors, looking in closets for people in the house, the "ancy pants" as I call it starts about 4:30p or 5:00p and lasts until dinner. A teatime with snacks doesn't seem to alleviate the behavior. This was the time of day, I threw my cranky children into a bathtub, so maybe kids have sundowning too.
@billiekip-wow. I hear you. We are just getting into this stage of constant searching for lost items…often the hearing aids, and almost daily, the wallet. I was thinking of an AirTag for his wallet, but probably too bulky. Scares me to think of wallet and credit cards, license etc getting permanently lost!
However did you think to look under the bed for those items? (And my husband is totally himself and capable 90% of the time! ) Hugs to you.
Yes, I do look under the bed. And I got one of those Tile units, but the phone locator on my iPhone seems to work best for that. Mostly, I just have to keep track of it. The last one she dropped in the 80 acre park where we walk frequently, it was later found and turned in but was broken and unrepairable. She hides her purse fearing that someone will break in and steal it. We live in a small town with no crime at all so that's just the paranoia that was part of her Alzheimer's diagnosis.
Address the wallet problem immediately. He likes to have cash; no need for it, but who does it hurt? I've removed all his medical cards and Medicare card that would be a pain to replace and made copies of them. He has only one credit card...I've simplified and only have 2 cards and a debit card myself. He has his driver's license for ID; he can no longer drive because of ALZ, so it isn't essential. Before bed, I have insisted that his pockets get emptied, and all items get placed on bedstand for use the next day. (wallet, comb, key with airtag, phone with Friend Finder). He puts a handkerchief over the pile for safety. From what? Whatever works.
ps. As an aside, I found the butter dish inside the kitchen drawer than holds my cooking utensils. I had to laugh when I showed a friend. He said, "Well, it fits."
@billiekip-Thank you! I will address the wallet problem. Great plan, to make copies of medical cards, as they would definitely be a pain to replace. And one credit card. Thanks for all the great suggestions! Now I need to google “Friend Finder”. He once went on a ski trip with his cousin, who was beginning this horrible journey. When it came time to leave, they could not find the cousin’s wallet anywhere. It caused cousin’s wife a lot of headaches! A few weeks later, a person cleaning the hotel room found the wallet in the Kleenex dispenser under a stack of tissues.
So do you color while he carries on and basically ignore the behavior unless of course he would hurt himself or you? When my husband flips to bizarre he often is close by me and starts the accusations re where have you been, what man where you with, on and on and I haven't moved from my chair. I usually try to ignore but have answered back when the accusations are particularly hurtful and my patience is shot. That of course only makes it worse.
I used to struggle finding his things as well but its now gotten easier because he no longer carries a wallet or money or a phone. And he doesn't ask about them either. I disconnected his phone because of his aphasia. It didn't make sense for him to have it if he can't speak to anyone about anything. So his "old" number is now mine. When he sees my phone he tells me he wants one and I tell him its OUR phone and he's okay with that :-). He has stopped asking me about his money and how we wants to go to the bank so that makes things easier as well. Once in awhile he'll ask me for things like his money or i.d. etc, and I just tell him that I have it safe in my wallet and that he doesn't have to worry about it and he has a relieved look on his face and says "ohhh thank you" . Im always reassuring him that him and all of his things are safe and he seems to appreciate it, so I guess I'm lucky in the sense that it's not a battle. I used to struggle with him taking the remote and he'd say he didn't take it and then i would find it in a very random place. Then i tried hiding it on him but he would eventually find it and then it would start all over again. I think he likes all the buttons and colors and that he might remember when he could navigate it, so i went to the thrift store and let him pick out a used one and put his name on it and he carries it everywhere. Seeing the joy on his face that this was HIS, I knew i did something right 🙂 Now whenever he picks up MY remote I tell him that one is mine and show him his with his name on it and things are good again.
Yes, that's what I did, kind of got into a Zen state and ignored him. He would complain about pain, he would rage that he hated me. It is very hurtful. He FINALLY got so weak I knew he couldn't hurt me. He'd chase me down to my room wanting to "talk" and I'd lock the door. He died several years ago. He was also drinking 2 bottles of wine a night and the drinking made things even worse.
I had breast cancer treatment not long after he died and it was a snap compared to living with him the last few years.
I should have said that I was married for 58 years and these were things that happened when he got Parkinson's dementia. He was a good husband before that. He was so frustrated and in pain and it wasn't his fault. However, it was still horrible the last few years.