Hi all,
I just found this site and am so glad that I did. I was very recently cast into the caregiver role for my 71 year-old mother who had been hospitalized for 3.5 months before being discharged into my care. She has been through a lot, both physically and mentally (pneumonia, TIA, URI, and confirmed dementia). I believe that, on top of everything else, she also suffered from "institutional delirium, " which from what I've read and been told, is quite common for an aging person with a history mental health problems (of which she definitely has), who've been hospitalized for extended periods of time. So once she was cleared to be discharged, she pleaded with me to not make her go to rehab from the hospital (despite the fact that she really needed to). I just didn't have the heart to deny her request and agreed to care for her in my home. It's been only 5 days, and I'm on the brink of being completely overwhelmed. Due to being totally bedridden for 2 of the 3.5 months she was hospitalized, she has ZERO mobility. The plan is for her to work PT here at home and eventually regain muscle tone and strength, and hopefully at least some mobility. However, I cannot shake the feeling that she has no intention of "doing the work" and becoming mobile. Every time I try to encourage her to do very light exercises in bed, she responds with, "I can't," with the excuse that she's too tired or in too much pain. When the nurse comes to check on her, however, she's suddenly able to raise and bend her legs on request, with a smile. But when I'm trying to clean/change her diaper, she will not even attempt to help make it easier for me so I have to move her as best as I can (not easy moving a 180 lb woman's dead weight). I'm not going to be able to continue pretending that I can manage doing all this, especially the diaper changing. Twice yesterday and once today, my eyes filled with tears as I tried to hold back my vomit, and revulsion. I simply do not have the stomach for it any of it (not only poop but huge external hemorrhoids, and blood from the hemorrhoids. ) I have really tried but I just don't have the stomach for it. I know that I must speak up but I'm worried that she's going to be upset when she realizes that I asked someone to take over this chore that I dread literally 4-5 times a day. But now I think of it, I'm not sure it's even possible to get someone to come to our home 4 times a day just to change a diaper (?). Is that even a thing? I'm not sure, but I am sure that it's getting harder for me to manage. I've got to get help. A home health aide is set to come and tend to her once/week, but what am I to do about the other 6 days?
I'm overwhelmed and a little lost. Thanks for reading 🙂
My neighbor is 75 and was caring for her 95 year-old bed bound mother who refused to allow outside help. Mom fell out of bed, broke her hip, was assessed at the hospital and is now in Memory Care. Why do we allow this to happen to ourselves?
Every plan needs reassessing & adjusting. Things keep changing so the plan can change too.
I'm surprised that this idea isn't mentioned more often. The elder's doctors rarely care about the caregiver, which is why so much is assumed and dumped on the caregiver. And of course it's the elder who is their patient.
BUT the caregiver has their own doctor, who is only concerned about them. I always said that I would get my own doctor involved if it was expected by my mother's doctors that *I* would do personal duties for caregiving my mother -- say, they expected her to go home to do rehab. Fortunately that never came up, as she went right from "independent living" in her condo to hospital to SNF rehab to long-term placement in SNF.
I went to see my sister's doctor. Couldn't discuss HER (no med POA) but talked about ME - crafty eh? Doctor said basically "Back away. Let the chips fall. Have sister come to me when not coping/needing round the clock care/needing endless chores done. I'll get a Social Worker for her. You stand back. Self preservation".
That was one straight talking, experienced lady! Her culture was to one to respect your elders (no NHs) but she said this has to be *within REASON*.
Your mom will get better care in a professional setting. Also, if her mental / physical health declines they can make appropriate referrals. Just be the squeaky wheel and insist that she be moved.
sending hugs.
Your wife isn't doing it deliberately. The only reason it matters is that if she *were*, she might be capable of reform; but she isn't, and she isn't. Unfortunately this does not make keeping her clean, comfortable and safe one whit easier.
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It is possible to do this, really? . . . "Send her back to the hospital and leave her there"?
* How does this 'demanding' process work; are there legal ramifications?
* Wouldn't leaving her there be considered abuse?
* How to handle if a care facility WON'T admit her, again (without asking a lot of questions). In other words, why would they take her 'back,' knowing what you are wanting / trying to do. (Unless they understand and support the process knowing what this means to family members.)
* I would like to see what an attorney specializing in elder care has to say about this.
* This is potentially vitally important for caregivers/ family members to know.
UPDATE:
I've read through a lot of your answers and for the most part, they were kind and compassionate and actually did bring me comfort for a couple of days. For the record, I did not "know" that I wouldn't be able to handle taking care of my mom. I had no idea it would be as hard as it was. I promised her I'd do everything in my power to keep her out of a nursing home. Which is exactly what I did and feel no shame about it. A week after posting my question, her skin started oozing fluid and she'd started feeling pain any time I touched her legs and shoulders. The visiting NP came to check vitals and suggested we call 911. Mom passed 6 days later. I'll be posting more about that in a different Q.
At least wearing a mask & gloves all the time prepares you for wearing one now ALL THE TIME!
Good luck & God's speed