How do I resign from diaper-changing duty?

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How do I resign from diaper-changing duty?

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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 🙂

Adult Diapers Burnout Home Care Hygiene

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I feel your pain sister! I've been caring for my mother for 3 years, luckily she's able to use the bathroom on her own. Somewhat. I now have my uncle, her brother in the house with us & he is completely incontinent. The worst of it is he puts his hands in his diaper & it eventually ends up everywhere. Duct tape around his pants has saved my life! Caregivers come 2 hours a day 5 days a week from the VA for him. When they come. They were supposed to be here at 12:30 it's 2:10 now. Some days not at all. Check with your mom's Medicare insurance & fight fight fight to get some home help. Have one of the rehab nurses tell your mother she needs physical therapy in the facility if she's going to get to where you're able to take care of her. My mother accepts information from the nurses & physical therapist far better than she does from me. Just reminder her it's to get her back on her feet so you can do things together, go out & be social... whatever. Create a fantasy world for her to look forward to. But you do have to fight to get help.
At least wearing a mask & gloves all the time prepares you for wearing one now ALL THE TIME!
Good luck & God's speed

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Is there other family members that can help?

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Hi everyone,

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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I'm so sorry to hear this. I am praying for you.

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CaregiverL said: "You should not have taken her back home knowing that you could not handle it. Have her taken back to hospital and tell them there's nobody to take care of her. Demand to have her placed in facility. Hugs."
- - - - - - - - - - - - - - - -
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.

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Beattie, Anything I write here may be given/provided/copied to anyone who may benefit. Also, I believe (I don't know - ) that what a person writes here is not copyrighted. It is available to the public. Bottom line, if it helps someone, we need to distribute and share our comments / education / experience / support / inspiration. That is what we are all here for. I recently re-copied a post on Next Door - it was so good I wanted people to read it again (although I gave the original writer credit). I don't need any credit.

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I am so sorry for what is happening. You MUST face facts.....you cannot continue like this and no matter what, she must be placed before you are totally destroyed. There simply is no other solution. You must put her into a facility.

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My wife, who is also 71, has Alzheimer’s and, before I read this post and all the answers, I had convinced myself that she was not doing these things (belligerence, failure to cooperate, arguing with EVERYTHING I say, stumbling around, doing absolutely nothing to help herself, etc.) deliberately but now I’m not so sure. I’m at the very end of my rope! Fortunately, we bought Long Term Care Insurance and I’ll be placing her in a memory care facility within a couple weeks. I’m done with the guilt and shame of failure but I’ve been doing this for almost four years now and I can’t do it any longer. Nearly 52 years ago I promised “for better or for worse” and I’ve come to grips with the fact that a move to memory care is the “better” for us both.

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Good decision, Yohnny; and a very good way to look at it, too. I'm sure you're right that this change will be better for both of you.

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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You are not alone with your feelings. The longer it goes on the harder it will be to reverse your situation. You can tell your mom’s doctor ( or maybe talk to the nurse that comes in) that your mom does not have anyone to care for her any longer. Tell them you thought you could but you are not able to care for her properly. You do not have any legal obligation or moral one to care for your mom. It’s cheaper for insurance to get a family member to do it—but you can say, “No.” Most people don’t know that.

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.

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I learned the hard way, and I felt bad for my dad so I moved him into an independent apartment four minutes away from me and took on caregiving duties to the tune of six hours per day after work. When he refused to shower and change his clothing, my husband would step in and force him to do it. It became a battle. Unfortunately, he ended up with CDF, a UTI, E. coli, and dangerously low potassium. When he was being discharged from the hospital after just three days, he needed rehab in order to learn to walk again, so he went to a local rehab facility which also had nursing care and a dementia unit. After three days in rehab, they were ready to discharge him but I decided to move him down the hall into the dementia unit and it was the best decision I ever made. Unfortunately, he only lived for about 12 weeks after that. Had he been back at his independent apartment, I would have lost my job, lost my home, and the domino effect would have been devastating.

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TouchMatters: "Perhaps you can get your own MD diagnosis (stress disorder, anxiety, depression), and present this to the authorities (rehab) that would have been in her charge in the first place if you did not take this on."

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.

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Yes, get your own advice when pressured into caregiving. I did.

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*.

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I'm so sorry for your situation. Your Mum being only 71 too. You stepped in to help but found it way bigger, deeper & gruesome than expected. You are not the first & won't be the last ❤️.

Every plan needs reassessing & adjusting. Things keep changing so the plan can change too.

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Wow, you are a saint! If it was me a I would check myself into a psych ward and call Adult Protective Services and tell them where to find the house key!

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?

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Yes, Frances73. This elder folk caring for 90yo parents is becoming a trend! I guess the baby boomers are in for a rough ride. We are getting old, too! I have arthritis and Fibromyalgia and clinical depression and I'm having one heck of a time trying to pull this off! And I have BOTH my parents to care for in their home. Neither of them walk very well and struggle with incontinence problems and dementia . They "refuse" to leave their home for care but my dad finally let some pt people in. He was falling all the time.

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I really sympathize with you. I am the same way. I don't do well with smells. In fact, it was always difficult for me to change my babies' diapers, so I know I would never be able to change an adult diaper. By all means, as difficult as it may be, it's time for your mom to be in a facility.

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Your mother needs to be in a facility.

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Perhaps you can get your own MD diagnosis (stress disorder, anxiety, depression), and present this to the authorities (rehab) that would have been in her charge in the first place if you did not take this on. I am sure you'll come up with something due to necessity for your own survival. Do not discuss this with your mother. Handle it and get her placed in an appropriate care facility, then visit her bringing flowers. Do you argue or set up any situation where arguing may occur. Obviously, she knows how to manipulate you - until now. You have to put a stop to this however you can for your own survival.

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TouchMatters: Well said. Kindly put but very sensible. As was your earlier post 'heart to heart'. Would you mind if I referenced or forwarded that one on to another thread I follow *it's been a hard week*? I think that is just the right advice for that guy who is burnt out too.

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Even with mental illness, this reminds me that people should make every effort to stay physically fit and remain mobile as long as possible. The prevalence of sedentary, unnatural office jobs and health insurance as a security blanket doesn't help.

"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.

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To retire from that duty for a patient you are caring for, you'll need to hire outside help to come in and handle the daily living tasks. No other way around that. You will be stuck with the job 24/7 without outside help. Even 4-5 hrs a day will get you through some of it, but not all of it.

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

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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.

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I hear you loud and clear. Your mom really does need to be in rehab. My mom responds much better to the professional physical therapists than she does me.
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.

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We hired Visiting Angels to deal with my father. You have to pay them for 2 hour increments (it was $25 an hour in 2017) to make it worth their time to come. They also did light housekeeping, laundry, and helped get dad in and out of bed.

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I don’t know what your financial situation is, but you might be able to hire a home health aide or person. They might request a minimum number of hours there though, not sure. Does Moms insurance allow for help at home? I’d sure check. You might find someone or a couple people through your church who could come and do changes or help care for a period of time? When my brother and I could no longer care for my folks at home we put them in assisted living. That worked well, but you want to keep checking in to see everything is ok. My dads now in memory care b/c his needs are much greater. It’s been a great fit, but it’s a bit pricey. Good luck, I hope you can find some help!

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I think you may need to have a heart to heart with your mom. Tell her how you can not care for her at home if she doesn't try to help: exercising several times a day, helping you change her diapers, getting out of bed and into a chair for most of the day... Explain that you are not physically able to roll her when she doesn't help and her lying around will make her weaker than she already is. If it were me, I would give her a deadline to show improvement... or you contact the doctor about a permanent nursing home placement.

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.

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Often impossible and unrealistic to have 'heart to heart' with person inflicted w a changing brain and who has been able to manipulate family member - lots of history goes into these interactions, both ways. Best to do what is necessary for all parties concerned - and then have the heart-to-heart [listen, agree, show compassion] when everything in place. The care provider / family member needs to take control, esp when their own mental and physical health (quality of life) is severely challenged. Family members deserve to have a life, too - and often making these changes is extremely difficult (guilt, family patterns in place for decades, affected self-esteem), although necessary.

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I don't have anything of substance to add - just that all these responses are so on target from my experience with my mom in an assisted living community. OP, I hope you are able to take action on some of these suggestions - they are on the mark.

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You are not likely to find anyone to come in a few times a day to change diapers. Health Care aides generally have minimum shifts of 3 or 4 hours at a time. You would have to hire someone for the whole day.
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..

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I am caring for my 99 yo Mom and I feel your pain. When she was hospitalized for surgery I insisted that she go to rehab until she was able to at least move about with a walker. Unfortunately she only lasted 5 days in the rehab center, their issues, not hers. However, she had been up and moving enough that I was able to handle her at home. She is able to get to the toilet but I have to help pulling down her pants and Depend.
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.

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I am grateful to read that you know your limits, MidKid, so that your mom can get the help that she truly needs at this point in her recovery.

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.

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I like your answer. My Mom has dementia and is in AL. I’ll talk to her on the phone and she cries and says how lonely she is. Then I go visit her and have to wait while she finishes playing Bingo, or comes back from an excursion, etc. It makes me laugh at myself. I don’t regret our decision to place her there, she is safe, monitored, gets socialized, and I get to keep my sanity.

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Same thing happened to me. MIL refused to help me with her care. I knew she was faking it so talked with Dr. and because she wasn't "able"
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

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So interesting..My 86 yr old mother fakes with me...always unhappy, Can not make her bed, do her laundry, staggers around unsteady on her feet, cries when we are alone, can not take her own meds from a med box...needs them handed to her , is so “sad” she has moved to a retirement home..{independent} but when I visit unexpectedly she is laughing at lunch with her ladies , washing a load of laundry, walking steady down a hall or at an activity smiling!! I am now positive she puts on an act for me yet tells my brother only the “good” stuff! For the last few years people have looked at me like I am the crazy one...she looks good except when I am around..She is exhausting and my sympathy wears thin..sadly it makes me not want to visit..all I do is put fires out.. my brother gets the real mom!

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I would call the doctor and see if she still qualifies for inpatient rehab. If so go that route. Let your mom know once she graduates from this and is able to walk to the toilet safely she can return home. We used inpatient rehab each time my mom broke a bone and could not walk. If no breaks and she could stand and walk for me she then came home for home PT. Some in home care has 2 hr min care. You could coordinate that around changes, meals and have the care provider to laundry. I use help in the evenings depending on cost one girls agency is $20 an hr with a 4 hr min. The other is $25 per hour with a 2 hr min. Who I schedule depends on my needs and there skill proficiency. Wishing you the best.

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I am so sorry...I can not even imagine how horrible this task must be. I have to admit, as a caregiver of my mom, I would not and could not do that job. Your mom sounds like a nursing home candidate. I worked in geriatrics for 27 years and that is why many people were in long term care facilities...the inability to do their own daily care. Please know you would not be judged..save yourself!

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Another thought is to have a hospice evaluation. If mom won't even cooperate with PT, she may not do enough work in rehab and they will just release her because Medicare won't pay if no progress is being made.
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.

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There is one MidKid58 and that's me (although it should be 63!) and one MidKid. This situation actually kind of was 'mine' for a bit.

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.

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Midkid58 - I was taken aback when I first read this posting, thinking "But Midkid isn't new to this forum, and her mother must be much older than 71. And how could she possibly take this on, when recovering from her own serious and draining illness?" I was so relieved to figure out that the poster was a different Midkid! Hope you are still doing well on the road to recovery!

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You should not have taken her back home knowing that you could not handle it. Have her taken back to hospital & tell them there’s nobody to take care of her. Demand to have her placed in facility. Hugs 🤗

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Yup..go to an ER.then refuse to take her home..she will go to rehab..if she fails at rehab ..they will advise long term care! Save yourself!

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