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 🙂
At least wearing a mask & gloves all the time prepares you for wearing one now ALL THE TIME!
Good luck & God's speed
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.
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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.
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.
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.
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*.
Every plan needs reassessing & adjusting. Things keep changing so the plan can change too.
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?
"Showtiming" to look more fit when outsiders arrive seems common, and those who do it need to be called out. Compassion has limits when people inflict things on themselves (like smoking) or don't put out effort they're capable of.
The psychology of "I raised you, so you owe me this" also isn't fair, especially with the size of a diapered baby vs. an immobile adult.
She really should have gone to rehab to work on her physical improvement especially since she responds to them better. You might stay in the room while she has PT and discuss how well she does for them. Next time you ask her to help with the bathroom issues or exercise - you might say since she does so much better for the professionals it might be better for her to get the rehab at a professional place. The problem is going to be moving from home to rehab -- highly unlikely unless you have the money to pay. Always easier to go from hosp to rehab.
Toileting and exercise can be covered at the rehab. Maybe just have an honest conversation with her and tell her she was not ready to be at home. Then ask dr about process to get her in rehab
If she doesn’t show improvement in rehab it would probably be time to decide on long term care.
I know we feel like failures when we can’t take care of our moms with a pure heart. But in order to save your relationship with her you clearly need the extra help.
my 80 yr old mom can still toilet her self but there are still many tasks that I’m finding myself resenting. I’ve been living with her for 9 months and really feeling the burn out. She had a few falls and was in rehab when she begged me to move in with her last year.
Your question about hiring a diaper changer is a good one. Seems like someone could start a mobile service like Uber. You call them and they show up and do the deed. Medicare should cover it.
Prayers to you. Hang in there.
Meanwhile, try to get her to use the toilet every 2-3 hours. Try and get her to sit in a chair in the morning after breakfast, for a couple hours in the afternoon, and for a couple of hours in the evening before bed. If she is unable to perform these tasks, she will need round the clock care: either home health aides to assist you or placement into a residential facility.
Getting your mother into rehab if she is still eligible would be a good idea. The incentive for her to work at the rehab is that she cannot come home until she can get to the toilet herself.
You don't need to pretend you can do this part of caretaking when you know you cannot, but hiring someone is going to be costly..
Take a stand, rehab will make a world of difference. You cannot allow guilt to dictate not only what is best for her, but for you as well. She is a relatively young woman! Being able to be mobile enough to get to the bathroom will make a world of difference for both of you.
Good luck.
I have fallen into the pleas of my mom so I understand the poor decisions that can be made from listening to our emotions instead of our intellect. But the wondrous thing about being human is that I can identify the mistake and get into a solution.
Best wishes to your mom. I hope that she gets into a reputable rehab so that she can once again experience an enhanced quality of life. And may you lay down your guilt so that you can fill yourself with more positive emotions that sustain our physical and mental health.
To NH, she went. She didn't like it, but I called her bluff. When she was finally "able" to come home, she was very helpful from that point on. Changing diapers is a horrible job but I put my mask and gloves on and wen't to work at it. It only takes a couple of minutes if you have all your wipes, diaper, garbage pail etc out. Good luck
If mom can, but won't, the thought of being on hospice might shock her into the seriousness of the situation unless dementia is too far advanced.
Worth a shot.
Mom has had many, many, many surgeries. She insists she'll do PT at home, and she kind of does, if she thinks the PT coming is ''cute" but once left to her own devices and motivation, she puts the bands and weights away and returns to baseline, which after each successive surgery is lower than before.
She did do 6 weeks in a rehab facility after her hip replacement, not by choice and she was angry the whole time, and didn't rehab well from that. Went from walking quite well with a cane to needing a walker to walk 3 feet. She was discharged from the facility b/c she was NOT compliant nor making progress, so home she went.
Your mom NEEDS in house PT. You can't get her to clean herself up after a blowout, how can she possibly walk or do anything to care for herself!
My mom knows what happens if she winds up, diapered and immobile. YB will install a Hoyer lift in the ceiling of her bedroom and he will haul her up in the am, clean her up and "plop' her in a wheelchair. Problem is, the wheelchair can't fit through the door to her living room. She'd be stuck in the bedroom and kitchen.
I'm advocating for a NH now, but I'm the only sib who sees she needs more/better care.