Caregivers Eat Cold Chicken

A sense of humor . . . yep . . . that should be in all of our toolkits! Without it, I would have totally lost my mind before now. Things like refusing to leave a partner's/spouse's hospital bedside at night, trying to sleep on the floor because one of those stupid recliners that tend never to recline . . . then, magically, are rolled into the room because someone finally "gets it". Or, perhaps watching the person you love turn 50 shades of gray while having chemo drugs trickle into their IV, or watching them start shaking uncontrollably because that "drip" is running too fast until you find the courage to "dare" ask them to check on the dose . . . . while they're looking at you like you have 3 heads or something . . . . Or . . . . Or . . . . . we probably have a ton of those same stories. One friend of mine, too, once told me that he was trying, desperately, to help his father up a flight of stairs (a larger man than he), when his father suddenly started slipping backwards, knocking him to the bottom of the staircase, landing squarely on top of him . . . all amusing images now, of course, but tragic at the time we've lived through them.

Hey . . . have any of you ever heard of a National Organization for us caregivers? One that has conventions with speakers, lectures, etc., maybe once a year or so? Wouldn't that be of interest to most of us? I, personally, would find that helpful. I think we all have plenty of tips and suggestions and stories to offer each other that could offer us all more support. What do you think?

I'm for the National Federation of Caregivers - when's the convention?

check out "well spouse association" (wellspouse.org) . They have local support groups and yearly events.

@suppiskey2surv ohh the memories 😂🤣. I told the hospital staff after that my brothers last surgery that being ambulatory at the time was a flight risk, especially at night. ( He was just starting his sundowning at the time) but they said no, look he’s fine. I reply/ it’s not dark yet. I stayed on one of those bloody recliners the first night. The 2nd night I decided to leave it up to them. I walk in the next morning to 1: bed pushed up against the far wall, with additional rails ( they do have those things) 2: a bed alarm, well duh, 3: a full time attendant sitting in alcove by the door working on their laptop. 😆 the watcher (there’s a name for that but I have forgotten) was soooooo glad to see me. I went home every night after that, and he had a watcher for 2 more nights. But wait, there’s more-then they tried to discharge him home before he had physically eaten anything. Sorry but no that’s not happening , I know what the requirements are for discharge post abdominal surgery are, and you have not charted 2 of them. I want proof that we won’t be back in the ER by evening. He was there 36 hours more, and that was the last half way decent sleep I had till 4 months later when he passed.

I had 2 parents suffering from dementia (one Alzheimer's and the other vascular-related) at the same time. My father was ambulatory at first and then his legs didn't work anymore. He didn't want to wander but once he lost his ability to walk, he often said how he wanted to walk outside. My mother would sneak out a lot, usually i found her at the end of the driveway but sometimes she would make it to the end of the street. Luckily, I had kind and understanding neighbors.

@phx611 That must have been so hard for you. I hope you had some emotional support.

@lizzyj58 I think I would have had more support if I would have asked. I had family that would come and visit and they helped, they at least made sure I did not have to eat cold chicken dinners. Home Health services was a relief but they couldn't be there 24/7.

@phx611
Wow, you are truly very busy. Welcome to mayoconnect. It is a great place to meet others and share or give information . Anytime your needing answers or just want to talk ..someone will reach out. Love this site. 🫂

@phx611 It's not easy to ask for help sometimes. For some reason it can make us feel weak when we are trying to be strong. Just glad you had some help!

It is so interesting for me to read about caregivers. I didn't really recognize that role in myself and my husband certainly doesn't think I do any caregiving. He has severe depression, which he has had 10 years now, since he retired. He does less and less, barely getting himself out of bed. He has structured his life so there is no decent time to get things done or help. He sleeps until 3 pm. It takes him a while to truly take up. He stays up all night long watching TV. Meanwhile I just retired. When I worked I had work, the house and the yard to care for. Granted he does do laundry and used to do grocery shopping but even that is not routine now and he can't be counted on. It is so difficult because when he worked he was very helpful, responsible and logical. Now his logic is according to him. I always said he was a true southern gentleman. Now with depression he can only think of himself. He basically no longer communicates and appears to find it an imposition when I try to discuss anything with him. He has tried various modalities to treat his depression but nothing truly works. I say he is married to his depression. It gets difficult feeling like I am responsible to hold the world up to make his life easier. He does not take any steps to make his life better [or of course, to see the pressure or impact that has on me.] At least now retired I have more time. I am quite independent so it is hard for hubby to see his impact. He makes no requests on me. I do take vacations with friends and family [generally without him], have friends I go out and do things with, spend time with my daughter and young grandson, exercise regularly etc. The burden is heavy as I read all of your stories. It does make me see how much of a caregiver I am yet I guess like most of you, this isn't the role you'd have ever thought you'd be in.