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 🙂
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".
Best of luck xx
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...
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.")
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!!
If Mom has no money, tell admitting this. Medicare only pays 100% for 20 days. 21 to 100 50%. Suppliment may pick up the difference if not, may cost Mom $150 or more a day. If so, she will need Medicaid to pay the balance. Let them keep her as long as they want. Maybe have her evaluated for LTC while in rehab. If she qualifies, start the application for Medicaid to pay for her care. Be aware, that her SS and any pension will also need to be used for her care. Where I live rehab/LTC are in the same building so transition from rehab to LTC is easy if a bed is available.
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.
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.
Mom needs to rehab properly or you will be in a more difficult spot.
If you really can not handle her safely then a permanent placement might be necessary. Either Assisted Living or if she has any form of dementia a Memory Care placement would be appropriate.
You can pay I should say Mom can pay for full time caregivers. They do not need to be CNA's or specially trained as long as they can safely care for your mom that is all that is necessary.
Actually 4 to 5 times a day is a bit on the low side. She should be moved or repositioned every 2 hours and her brief (I do not like the term diaper) should be checked at that time. What are you doing about showering? Are you doing that or is the HHA doing that 1 time a week? Minimum a shower should be done 2 times a week. Showering is a good time to check the full body for pressure sores.
From your description I think your mom would be much better off in a facility with people that have been trained to care for her. Then you do not have to worry about brief changes, bodily functions, all you have to be is her daughter and her advocate.
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.
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.
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
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.
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.
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..
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.
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.
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
"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.