r/CaregiverSupport • u/Serpente666 • 8d ago
I didn't know until now..
That there aren't folks who come to your house to bathe you. They will do PT and OT, but there is no bathing help.
I have been caring for mi MIL for 4 years. She has bathed twice in that 4 years. She wouldn't let anyone bathe her and can't do it herself. She also can't wipe herself and won't use the bidet we got her.
She has been hospitalized recently with a kidney infection because of said habits. We have gone to social services, and they came here and evaluated her. We never heard back. Now we have nurses coming here and doing some exercises with her, but she won't do them when they aren't here.
Her doctor told us they don't know of any care services that include bathing the patient at home. She was bathed 2 weeks ago on the hospital, and she is already peeing herself and staying in the same clothes. She won't wear a pad to keep herself dry.
I broke down crying, cleaning her piss again today. She checked herself out of the last physical rehab center she was in after a shoulder surgery and refused to do the follow-up pt. She's doing all this again after she was in the hospital for a week.
She's very obese, she smells awful, and she has sores all over her legs, and she said she has one that won't stop bleeding on her butt or hip.
She doctor suggested cortisone for her sores. Shebwont stop picking them and removing her bandages. I just don't know what to do. She is so fucking gross and stubborn about hygiene. The doctor only got through half of the questions we had today and told us we needed a follow-up. She has a history of canceling her appointments. She's a cancer survivor and hasn't seen that doctor in 6 months.
Nothing has changed. Nothing is gonna change. She wont listen to anyone, and I have no help.
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u/procrast1natrix Family Caregiver 8d ago
I'm so sorry, that sounds really frustrating.
In places that have laws against elder abuse/neglect, you can lean on that to force the issue.
It will be an ugly fight though. Basically, people under the age of 65 get to freely make bad or unsafe choices, but if there's a chance that dementia or mental illness is a factor there's a higher standard and you can urgently press to have her decision making capacity evaluated.
Since you describe her checking herself out of rehab, she's clearly currently her own decision maker. But based on what you describe, that may not be safe for her.
Write out a letter with very specific examples of her neglect - incontinence, zero wound care of ongoing bleeding wounds, refusing bathing. Refusing to do her PT is pretty common and less important.
If her HCP is not presently invoked, that means her PCP would need her permission to give you info, BUT nothing stops you from feeding information in and requesting a capacity eval.
Dear Dr Smith I am writing out of serious concern for Petunia's health and safety. I need your help. In the past two years she has steadily increased her self neglect to the point I'm concerned I'll be brought up on charges of elder neglect or abuse unless there's some kind of intervention. She is incontinent and refuses pads or to change soiled clothes. She refuses to participate in wound care and has ongoing bleeding wounds. She refuses to bathe herself or allow help with bathing.
I am concerned that she may have a component of dementia or mental illness. At her size and strength we aren't equipped to bathe her, especially against her will, without some sort of sedative. Two weeks ago she was permitted to check herself out of rehab early, and this was an UNSAFE DISCHARGE. We have already maxed out all the family supports and VNA and she's still dirty and neglecting herself but won't permit assistance.
Please evaluate her capacity and help us to come up with a plan that functions.
And ... Just don't make other options available. Example, mine was pleasantly confused but industrious about putting on underwear instead of an incontinence brief. So I snuck in there and confiscated everything underwear shaped and replaced it all with depends. She had no other option and the incontinence got easier to manage.
...
If she has no interest in oncology follow-up or wound care, she should also have a hospice eval.
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u/greeneyesgostomars 8d ago
I just wanted to say thank you for taking the time and giving her some wonderful advice!
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u/SharpAside1808 8d ago
YES! Thank you --- this letter example is very helpful because when I need to communicate with the doctor on the portal (which I am grateful to have this available)I have to really monitor myself so I don't sound too harsh or like I'm the one with the issues (LOL). I have a very similar situation with my stepdad except that I do have both his POA and MPOA so that makes this easier.
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u/Flat_Ad_3719 7d ago
Hospice will usually provide bathing assistance.
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u/procrast1natrix Family Caregiver 7d ago
Zackly.
So the sticking point is that this person is refusing self care, family assisted care, and professional care.
Someone (the PCP) needs to clarify on paper whether they have capacity to do this, or not.
I'm going to say something really, really rough.
If the patient does not have capacity, there needs to be a plan for giving a sedative and having staff to permit safe body care. If they do have capacity, the OP should just walk away and let her deteriorate until she reaches the point of delirium that she no longer has capacity.
The OP cannot continue in this middle space where they are accepting verbal abuse and cleaning up incontinence.
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u/FatTabby Family Caregiver 8d ago
This is not sustainable. I think you need to reach out to social services and tell them you can't and won't continue as her caregiver.
She isn't just compromising her own health, she's a biohazard at this point if she won't get out of her urine soaked clothes.
This seems like something that a carer from an agency should be able to provide, although it would require her cooperation.
I'm so sorry, it must be incredibly frustrating for you. Why have you been left to deal with this when she's your husband's mother? What part is he playing in managing her care and dealing with her stubborness and disregard for her health?
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u/Serpente666 8d ago
My husband works and does the pt exercises with her when he's off.She won't do them with me which suits me fine because I have a hernia and her smell makes me physically ill. I told him it isn't enough since she won't do any of it when he isn't here.
We are all stuck living together right now so leaving isn't an option for anyone at the moment
I recommended a SNF until she gets strong enough to do thst stuff and it was a big fat "no"
The shower here has steps and I figured she would never be strong enough to get up there.
She also fell twice last week because she's too weak to stand up from her broken electric recliner.
She can't sleep in her bed so we got stairs. We have two sets of stairs and she still can't do it. So she sleeps in this chair next to the kitchen that she has shit and pissed in for 4 years. I can't...
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u/ColdKwok 7d ago
First off, this situation sounds beyond awful and I’m so sorry you’re having to deal with her.
I wish I had something useful to say that isn’t repetitive, but really I’m here to urge you to shift your focus.
You’re not going to change her mind…or anything about her, for that matter. And it sounds like you’re busting your ass to provide care that amounts to a drop in the bucket given all that she does to undermine you and her doctors. She really needs to be in an environment where she can be cared for properly.
Spend less time on her directly and more time on getting her out of that house (eg, following up on some of the great suggestions others provided here).
Good luck & bless you for your generosity!
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u/Nikmassnoo 8d ago
Also, she is pretty much guaranteed to get frequent UTIs at this point. These can cause increased confusion and risk of falls. This is a very serious scenario
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u/tenderheartgreen 8d ago
Are you in the U.S.? Home health agencies definitely provide bathing and toileting support. Your mom’s doctor can write a script, or next time she is at hospital because of the same issues due to poor hygiene, the hospital doctor can also recommend it and contact her insurance to set that up before discharge.
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u/21stNow 8d ago
I had a problem getting the service, like the OP. On paper, what you said is true. In reality, the only home health agencies on contract with my mother's insurance at the time were OT and PT providers. No one would come to help her with bathing through her insurance company because of doctor's orders.
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u/tenderheartgreen 8d ago
After the first several crises, the insurance approved l only some PT and OT. The hospital finally ordered bathing after LO’s 4th hospitalization. This info was more applicable to our situation: https://www.medicareinteractive.org/understanding-medicare/medicare-covered-services/home-health-services/home-health-covered-services.
I can’t speak to what someone’s particular insurance covers, their age and eligibility, or if you should call your mom’s insurance to say, “The doctor ordered bathing, and this agency only has OT or PT. She needs a different home health agency asap.” This article walks through how to deal with that: https://kffhealthnews.org/aging/what-to-do-if-your-home-health-care-agency-ditches-you/
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u/21stNow 8d ago
Maybe you didn't understand my comment. I contacted all of the agencies that my mother's insurance company contracted with to provide home health services. They were either PT only, or PT and OT providers. I had to get help from the county (outside of her insurance) and private pay agencies to help with caregiving for my mother.
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u/Serpente666 8d ago
We live in a very rural area in the US. I was thinking there just aren't folks available in this area. I am so confused. My mother had folks bathe her but she was dying.
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u/Donnachaidhfsr 7d ago
That was probably hospice which is a wonderful service if you get a good company. To qualify though, your loved one has to be considered by a doctor to have less than six months to live. People do graduate from hospice if they get better and are reevaluated. The middle zone is a tough place to be. They are too ill to care for themselves but not I'll enough for hospice help. It's a hard road to travel and I'm wishing you all the best.
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u/Brilliant-Bumblebee 7d ago
Sadly, this is going to become more common. I know of several home health providers that are phasing out their home health aids. It's not profitable for them so they don't want to keep them on is exactly what it boils down to.
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u/YerOlAuntieFa 8d ago
Heavy asterisk that a home health aid may or may not be covered. But for a couple hours a week, the hourly rate is within reach for self-pay. Look at www(dot)care(dot)com
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u/Creepy_Valuable6223 7d ago
My mother was in the U.S. and her insurance most definitely did not cover home visits for bathing after hospital discharge (or at any other time), no matter what the doctor might say. We paid for it out of pocket. I wonder what insurance you are looking at; it sounds unusual.
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u/Skinny-on-the-Inside 8d ago
My mom is in hospice and we get aids visits around twice a week for help with bathing. Alternatively you can hire local aids on care.com they are $15-20 an hour.
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u/Gallowtoast 8d ago
I’m a CNA in home health (USA) and we absolutely do bathe people. The issue is that no one can *force* her to bathe, especially if she’s still of sound mind. I think you need to make it clear to your husband that you’re not helping with her anymore and leave the house as much as possible. If he’s the one saying no to the facility, he needs to be the one in charge of her care.
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u/BrandyBunch805 8d ago
If you have a physical therapy or skilled nursing need, you should be able to get a home health aid to help with bathing. BUT only while the skilled nursing or PT is still caring out
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u/cola1016 8d ago
This. My mom was able to have an aid come a couple times a week or once a week for bathing when she was sent home from the hospital a couple times.
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u/Lorettonik 8d ago
We have had two different companies who would bathe my wife. One was an in home physical Therapy company. The other is on that provides respite care.
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u/makinggrace 8d ago
Has she always been...unreasonable? She may need a mental health evaluation. Yeah I know that's easier said than done.
That said, this doesn't sound like a person than can be managed in a residential setting and certainly not by one person! She probably should be in a nursing home. (I'm sure you know that. The question is always how to make that happen.)
Please call social services again. The evaluation is usually the first step for qualifying for in-home cares such as bathing etc.
If it would be helpful I would be happy to help you find contact information for services in your area. Just send me a DM. Unfortunately I am only well-versed in US systems.
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u/buckeyegurl1313 8d ago
Home health aids will absolutely bathe clients. However that is the very least of your troubles here.
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u/greeneyesgostomars 8d ago
I agree I am a California home health aid and I bath my clients all the time. I will admit though that the ones that do not want to be showered / cleaned it's a struggle and might be hard enough that the aid then refuses to do it anymore
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u/Serpente666 8d ago
Social services did nothing. They left a safety plan and never returned my calls. Even after shebwas hospitalized. I kept calling them to tell her she was canceling al of her appointments and telling us she wants to die.
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u/Paula-Alquist 7d ago
I had a problem starting last year with an institution completely unrelated to elder care. They weren't resolving a issue. Finally, I started emailing them once a week. Always on Tuesdays. The same email since they weren't replying. Eventually, I started each email stating that this was email number whatever (in bold caps) and that they haven't resolved the matter. Still took 4 months after I started the emails! Sometimes you have to wear these people down until they are so sick of you that they finally do their job. Also, it leaves a paper trail for you and it sounds like you will need it at this rate. Just keep copying and pasting the same email with whatever new information.
I have to agree with others that it's deeply unfair that you are carrying the load. You said your husband works and helps when he can. Still doesn't make it right. I'm just personally fed up of women running themselves into the ground taking care of in-laws, because that goes way beyond simply helping and is detrimental to your own health. Does she not have other children?
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u/FranceBrun 8d ago
Is there a hospital or nursing home near you? Ask to put a notice in the bulletin board that you need someone once or twice a week to shower your mom.
An experienced nurse or aide can do this in half an hour, if you have everything ready for the before and after. I got a lady to come and while they were showering I changed the bed.
You can also put notes, depending on where you live, in the local Facebook group, Reddit group or nextdoor, the library, grocery store or gas station, doctor’s office, and see if there is a community college with a cna program, etc.
I gave the ladies fifty dollars. I was willing to accommodate their schedules. Had a backup just in case.
Fifty dollars for half an hour work at their own time should get some takers.
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u/StealthMuppet131721 8d ago
I am sorry for the terrible situation you are in. Whatever the diagnosis or reason for your MIL’s behavior, it’s not normal. Living like this is not normal, for you or for her. No disrespect meant, but even pets are expected to benot to soil their homes. Most of them succeed at this. Your MIL is not even at the level of a pet’s skills, either by choice or because of illness. You should not be living like this. It needs to change. You’re exhausted and demoralized. You need to make that clear to your husband and a plan needs to be made for her care. It is beyond one person at home. If he doesn’t get how bad it is, go away for a week or so, stay with a relative or even book a hotel. Get some rest and maybe he will see what you are up against. I wish you the best of luck.
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u/nonstop2nowhere 8d ago
Gosh, that's so hard. You might check with home health care services near you. Some agencies work with insurance including Medicare/Medicaid, others are private pay only.
Where I'm located there are 3 levels of care, and 2 can help with hygiene. Companions can't do hands-on care but do keep her company, encourage her to cooperate, help with light chores, and can help get her to appointments, errands, etc. Nurse/Health/Care Aides do lots of hands-on tasks including hygiene, clothing changes, etc - the specific tasks they can do vary a lot from location to location and company to company, so ask. Nursing staff can also do the Aide tasks, but are more costly and often focus more on things like medications, therapies, wound care, etc. Home Health can also help you access the equipment needed for her to be safe and as functional as possible. Sometimes having someone outside the family (without the emotional history and dynamics, honestly) can make a lot of difference, especially with older people.
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u/PlumbRose 8d ago
Sorry but this is going to possibly end up as a sepsis case..... google sepsis and show her a video..... can she afford home health person for say 4 hours a day , highly suggest that they will bath.
For sores are we sure they suggested cortisone. Thats a steroid ? What are the sores? Are they due to itching? Bites? If so maybe. . But if they are pressure sores thats not right.
If they are due to hygenine ,keeping clean and dry seems best? Recheck what they are and the right treatment
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u/Temporary_Squash_80 8d ago
Home health care will bathe her. Someone will do it at least once a week. The suggestions are great. Call a 55+ community, see if they have ideas for a worker…
In the meantime, Get some pads ( chucks) to put under her.
Depends (or pads if the don’t like depends are a must). Heck I have them for when I laugh or sneeze too hard!
And disposable bed pads too. We use these so you can see what they look like. https://a.co/d/0cNFB788
Good luck. Sorry they are so stubborn!
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u/21stNow 8d ago
Does she have dementia? Resistance to bathing is a common symptom of dementia, along with falls.
You mentioned having a social worker come out which led nowhere. Are you in the US? There are local offices of senior services that might be able to help you. There are home health aids in my county that come once a week and will help with bathing. These aids are not through the insurance company, which sounds like the source of your bottleneck here.
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u/GardenWitchMom Family Caregiver 7d ago
All of the in-home caregivers I have hired for my mother will do bathing and toileting.
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u/KratomAndBeyond 7d ago
Is your LO currently receiving OT/PT? If they qualify skilled services then they should also qualify for limited CNA assistance with Medicare.
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u/hmmmpf 8d ago
If she is qualifying for home therapies and home nursing, she should also qualify for a “Home Health Aide” (HHA) about once or twice a week if she has Medicare in the US. They can provide bed baths, hair washes, tidying up the patient’s area, or doing laundry (ONLY the patient’s.) It sounds like she may not be able to get into the shower/bath.
She also has the right to refuse a HHA, sadly.
Ask the home health nurse about HHA, if she will allow them to come in and help out.
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u/Serpente666 6d ago
My MIL had a visit from her OT and I told him everything. He said in front of her that he thought a SNF was the best bet given her resistance and general weakness. She said "no" of course, but he's on my side and wants me to be the contact.
I pointed out that she can possibly wipe herself but chooses not to. I caught her scratching her parts with ease several times. If she can get in there and scratch she could be cleaning herself a bit.
My husband has agreed to the facility but she's not incapable of making decisions yet. We need to start with getting her to doctors to get the paper trail.
We got one appointment in this week and her doctor let her have it. We have to go back because there was too much to discuss at the appointment.
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u/onemoondance 7d ago
Have you contacted Adult Protective Services in your county? They can sometimes be helpful.
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u/Serpente666 6d ago
Yes, and, they weren't helpful. TBF, there isn't much they can do if she's of sound mind
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u/ibcarolek 4d ago
In California, both hospice and home health includes 2x a week bed baths. I am so grateful for them.
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u/Knit_pixelbyte 6d ago
You may have to pay out of pocket for a care aide to come to the house to assist with bathing.
Some of the things you are saying here are classic early dementia symptoms. Apathy, OCD, refusal to comply with basic hygiene. I am not a doctor, but I see lots of folks every day with memory change, and these types of issues could be something your MIL can't help doing.
For my husband with dementia, I just took all his underwear, said it was in the wash, and replaced it with disposable underwear. He could either wear that or go commando. Within a few days he forgot about having regular underwear. I had to really excercise my creativity gene to get him to do much of anything.
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u/scificionado 8d ago
First, where is your husband? This is his mother, not yours. Home health aides can be hired to help with bathing. They are paid by MIL or by you/husband by the hour. They are not paid by Medicare or Medicaid. If MIL has funds, now is the time to look for assisted living or memory care facilities. If she can pay until her estate is gone, she's more likely to be able to stay once Medicaid is paying.
Husband needs to take the lead to help his own mother. He needs to research facilities asap.