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 🙂

Call the hospital discharge planners and get her to rehab. Now!

She has dementia. Her reasoning abilities are shot. She is no longer a reliable determiner of what is best for her. She needs rehab.

"This is what the doctor says you need mom".

"Mom, I can't do this. My health and my back are getting ruined and I won't be a good advocate for you if I'm sick or dead".
Helpful Answer (27)
Reply to BarbBrooklyn
dlpandjep Feb 26, 2020
I just love you Barb!  Thanks for the 😊
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[I've deleted quite a lot because newcomers to caregiving don't want or deserve harsh home truths. Warning - this will still sound harsh, but I can't help it].

You're worried that she's going to be upset...

Aren't you worried that her health will suffer because you don't know how to motivate her (you not being a trained physical therapist, and all that)? Aren't you worried that her primary caregiver (you) can't keep her clean without gagging? Aren't you worried that she is being looked after by someone (you again) whose response to seeing bleeding haemorrhoids is to be revolted?

Worry less about her being upset and more about your being manifestly unfit for purpose.

Go back to whoever handled the hospital discharge and find out how you retrace your steps. If you can't, there is no way to, then find out what you have to do to get your mother into short-term rehabilitation. Get It Done.
Helpful Answer (24)
Reply to Countrymouse
anonymous1026199 Feb 27, 2020
Well said. My motto is "I care about you enough for you to hate me right now or forever, if it means I have your best interest in mind and what I'm advising you to do can only help you". I refuse to enable those closest to me to continually self-sabotage on top of hurting others and taking advantage of them, unless I've had to (and yes, I've been put in situations where I just had to walk away for my own safety... literally). Otherwise, I'm not afraid to challenge, encourage, coach, cheer on, or speak honestly but with compassion, and ultimately, do what needs to be done in order to help someone get better.
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I'm going to be asking you a lot of questions...

1. Why was it YOU that gave in to her pleading? Do you have her POA/HCPOA? Or does your mother assume that YOU as the only daughter should be the one to be her caregiver?

2. Do you realize what could happen if you don't put your foot down and get her out of your house now? You will spend years at this. You will wreck your own financial future.

3. You're afraid to hire someone just to change her diapers because you're afraid it will UPSET her?!?!?!

You need to change the course of this train right now as it's leaving the station, before it becomes a runaway train. You need to get her out of your house NOW. And when she's done with rehab, don't take her in then, no matter what kind of pleading she does. She needs to go to rehab, and then possibly to a NH if she still needs that much assistance.

4. Why don't your brothers help? What is her attitude towards them? Towards you? Are they the golden children? Why did you accept her into your home? Why didn't they?

You are way too young (your mother is only 71) to give up on your own life the way you have. But the good news is that you now know it will NEVER work out to have her live with you. I had a similar realization when I moved in to take care of my mother after an illness. After just over a week, I was able to leave. That experience taught me that I would never do it again.

PLEASE don't wreck your mental and physical health and your financial future to give in to the unreasonable demands of this woman.

5. What are her finances? Can she afford a facility? If not, would she qualify for Medicaid? (PLEASE don't tell us that she's been giving large gifts of money to people!)

Tell us more, and keep us updated. We are concerned for YOU. YOU matter, more than your mother's "wants." (And make no mistake, they are her "wants.")
Helpful Answer (21)
Reply to CTTN55

Get your mother into rehab and tell her the reward for being able to walk out is an AL apartment. Return to your work and continue your life while being your mother's advocate, not her direct care giver.
Helpful Answer (18)
Reply to TNtechie

Yuck. This is not a nice situation at all. I'm sorry that your mom convinced you to take her home with you. Obviously, there's much too much to be done by one person to care for one who refuses to be at all cooperative.

I agree with a few prior posts - give her an ultimatum - cooperate or you're OUT.

Or just put her in rehab, where she belongs and if/when she gets it together and can be more independent, MAYBE take her in. But ONLY if you REALLLLLY want to and her diaper issue is resolved.

Changing adult diapers is a line I am NOT willing to cross. When that, please no, happens to my mom, that's it. I'll be finding a placement for her ASAP. It's too gross, too hard, etc etc. I don't have the stomach for it.

You do NOT have to do anything you do not want to do. Some may call it selfish but I call it self preservation!!
Helpful Answer (18)
Reply to againx100

MidKid, you probably won't have an easy time hiring someone to come in a few times a day just to change her underpants and clean her up because this is low-pay part-time work and prevents paid caregivers from developing a client schedule that gives them enough hours to live on. I learned this from hiring an agency for my LOs. Better to hire someone for consistent hours for at least a few hours per day IF your mom has the financial means. If she doesn't you can call the county to get her assessed for in-home services. This is a temp situation until she can be moved to a permanent place. You will wreck your back trying to move her around. As Barb below suggested have her go to rehab and then have her go from there directly into a facility. If you do not have PoA for her you can have the county get guardianship for her and they will take care of her and then you both win. It's all hard but there are solutions, so hang in there -- let us know how it goes.
Helpful Answer (16)
Reply to Geaton777

Is it just me, or was anyone else confused with the OPs name?

MidKid vs Midkid58?

AND Barb used a swear word a little more severe than the usual?!?

I feel like I’m in an alternate AC reality...

So confused...
Helpful Answer (15)
Reply to Rainmom
BarbBrooklyn Feb 26, 2020
I meant SHOT!!!! Really! Look, I swear in real life, but not here!
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My current patient has these same traits. I finally told her either (A) she's going to have to make an effort to help me turn her if she wants to get changed & stay in the comfort of her home being waited on nonstop. Or, (B) She could continue the behaviors & that if she's feels she's too weak, sick, etc for basic stretches and to help with turning, it's best she return to the hospital. I then left it up to her to decide. She chose the first option needless to say, in about two minutes. She still tries me, but the "either/or" approach is factual, clear, efficient and thus, effective every time.
Helpful Answer (11)
Reply to anonymous1026199

As a retired psychotherapist, I would like to suggest that your mother is engaging in passive aggressive behavior. Not only is she manipulating you (much like the wide eyed 3 year old that NEEDS the candy), but the "inability" to participate physically in helping you help her is classic. The only stop to this is what the others have suggested. Unfortunately, you took her at discharge. Unless rules have changed, to get her into rehab or nursing home requires private pay. Medicare has some screwed up rules about paying for these placements. Call the hospital's discharge planner or the admitting nurse (or social worker) at the rehab or nursing home. See if there's a work around. If not, then it's private pay or (and I know this sounds horrible) or wait until she has skin breakdown (decubitus ulcers) from urine/feces contact. You are not trained to deal with these issues, and without her assistance in rolling over, etc. they WILL happen. Then it's off to the hospital (or even just the ER) and THEN straight to a nursing home for care and physical therapy.
Helpful Answer (11)
Reply to MamaRandom

Absolutely what Barb says! I would also encourage you to segue her to a NH after rehab, especially if she doesn't get a lot better physically, and also because of the dementia. You think you're miserable now - wait till the dementia gets worse! I have a lot of empathy for you, as I find myself unable to do what you are doing, even for a child, without being sick; don't let it get to where you can't stand to get up in the morning.... (hugs)
Helpful Answer (10)
Reply to mally1
JoAnn29 Feb 27, 2020
The kids didn't bother me but an adult...and she took iron pills which I think were the cause of the overwhelming smell. I don't know how my daughter did LPN/RN in rehab/NH facilities for 20 years. Yes, there were CNAs but if not available, my daughter went ahead and did it.
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