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The nurses have asked that when I come to visit I help them get her to the shower. They also tell me that she doesn’t get up and ask if I can help her get up when I come to visit. What can I do? I can’t be there all the time to make sure she gets up, takes a shower, just participates with life? The CNAs try to help, the nurses have told me that they can’t force her because they could get into trouble. She makes big scene when she doesn’t want to do something she is eating. They are bringing her meals to her room. She wants to sit at the table and eat with. anyone. Is this the end?

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She has dementia, incontinence, depression.
How much longer would you expect her to want to go on with all of this?
Is it not a constant torment for all, and especially for her?

It is time now, imho for Hospice.
They will be a boon for the CNAs attempting to care for her.
When she is no longer willing to get to the shower she will get bedbaths, and they will attempt to turn her so as to prevent skin breakdown.
If she does not wish to eat of drink, then in my own opinion she should not be forced to.

Your mother is dying. Allow her to do so with dignity. She has already been through ALL OF THE LOSSES, including the loss of her mind. Please allow her now to seek the final peace which is where we ALL will go.
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It is NOT your job to get mom up, get mom to shower, get mom to eat or whatever they are asking you to do.
If they continue to ask you to do these things ask where you can punch in so you can get paid.
There is also a liability issue.
If mom gets hurt while you are getting her up who is responsible?
If you get hurt are they going to pay for your injuries? I doubt it.

If they are "asking" mom if she wants to shower, if they are "asking her to get up and go to the dining room or the activity room then they are not going to get very far.
They should be TELLING mom..."Mable" it is time to get up and go for lunch, let me help you" "Mable" it is spa time, lets go get ready" or "Mable" it is time for a shower, let me get your pretty pants and blouse that WendiG brought you"

They should know how to deal with a reluctant resident.
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Can they do a bed bath and use the shower cap for the shampoos? It sounds like the policy of that facility even though it may not apply elsewhere. I've never heard of someone being left to wallow in their own filth because nurses are afraid of getting in trouble. When a patient is done with showering because it is too painful or it is too much of a bother, do a bedbath.

Sounds like your mom needs a higher level of care in a long-term facility.

Edited: Clients right to refusal. I've seen this in the extremes with clients refusing to get out of bed ending up with bedsores from lack of movement. One client died due to refusal of sitting up, getting out of bed and refusing physical therapist. The physical therapist who was coming to his home discharged him as a patient. Client continued in bed for another month later died from complications. It happens. This client did not have dementia. However he did have the right to refuse care.
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BurntCaregiver May 26, 2024
@Scampie

I've never heard of a nurse who's given a patient a bath in the last 30 years. That's aide work.

If she won't take a shower they can wash her up with a bed bath or take her in the bathroom and help her wash up.

Sometimes you have to be a little bit intimidating with seniors who are resistant to hygiene care. As you know if you've already tried the coaxing, conjoling, and promises of treats to no avail, that's when you have to get demanding and the person gets washed up whether they want to or not.
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Wendi, my granny refused showers and we told the facility to just get her bathed. She would scream the entire shower but, she was fine as soon as it was done. She didn't remember 10 seconds after the water was turned off that she was so terribly distressed, so it is not as cruel as it sounds.

Gut wrenching but, some things just HAVE TO BE done and this was one of them. Her overall well-being was at stake and that trumps everything.
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BurntCaregiver May 28, 2024
Well said, Isthisrealyreal and true. It is not nearly as cruel as it sounds.
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My Mom with dementia refused showers . One of the reasons she was in a facility was because she wouldn’t bathe at home . So I felt it was their job to figure it out .

She never liked showers her whole life. Her whole life she took baths and washed her hair in the kitchen sink . At home when the bathtub got too difficult to get in and out she would take a shower now and then , but mostly was sponge bathing herself for years ( and washing hair in the sink ) until her brain was too broken to manage any hygiene at all . She would not allow me to help her at home with hygiene . She wouldn’t allow hired help “ strangers “ in her home .

While in the facility I bought her the big body wash wipes to use . It was easier for her to figure out than using the sink. Then she stopped using them , so I would help when she would let me to keep her from being kicked out of AL for unbearable odor .

Then her incontinence got worse and her room smelled so bad . The owner told me she had to shower by the end of the week or would be getting 30 days notice to leave . So the nurse and I told Mom that and she still refused . Later that week the nurse and an aide finally got her in to shower . BUT I had to tell them to clean her chair and the carpets in her room from urine when the facility complained that Mom’s odor was too much . Showering her wasn’t enough . She was forgetting to change her depends often enough and wouldn’t let them help her unless she was really soaking wet and she was having difficulty with her wet clothing sticking to her legs . I started lining up a move anyway because it was inevitable that she would have gotten 30 days notice . It was a shame because the memory care by me , the people don’t even talk . My Mom wasn’t that bad . She was going to be very upset leaving her AL. I kept thinking , if only Mom would let them help her .

She absolutely refused help from staff with bathing unless she had occasional diarrhea . She was very modest and embarrassed. She would allow her hair washed and dried at the hair salon at her facilty, weekly , and haircuts .

I agree with the advice of tell the facility to just give her a bed bath . And maybe see if Mom is willing to go to the salon for hair wash weekly . Or have them do a shampoo cap in her room .

My mother regressed to staying in her room except for meals as her dementia got worse . I suspect had she lived longer she would have eventually refused to come out at all . I wouldn’t force her out of her room , let her be .

So sorry , it is very hard to watch , I know . Let the facility take care of her , you should not be expected to do these things . My mother died , probably a heart attack , during her afternoon nap . They found her at dinner time in her chair in her room ( she hadn’t shown up for dinner in the dining room ). It was for the best , because we were facing a move to memory care or SNF over her uncontrolled incontinence. Mom was aware because the nurse from the new facility had visited Mom days before her death and Mom didn’t want move .
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I just read your profile and first I must say that you are a much bigger/better person than I, as I would NEVER have chosen to care for a mom who I was estranged for 40 years. I was estranged from mine for over 20 years and the thought honestly never crossed my mind towards the end of her life.
The folks at your moms memory care are the ones who are responsible for getting mom into the shower, and for getting her up out of bed, not you. That is what they're paid for.
If she continues to make a scene, you just tell them to give her a bed bath. And if she wants to stay in her room to eat. let her. These are her choices and with a broken brain there's not much you can do to help.
You now have to protect your mental health, and I know that being around the woman who gave you life and who you were estranged from for a very long time, has to be very difficult, so I would just limit my visits to perhaps just once a week and tell the facility NOT to call you unless it's an absolute emergency.
Either that or just let the state take over her care, so you can concentrate on your healing and your marriage as you say that this is now affecting that.
I am a FIRM believer that no child should EVER take on the care of a parent who abused them in any way. Period. End of sentence.
And to answer your last question, "Is this the end?" I can only hope and pray for your sake that it is.
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If it were my mom doing this, honestly, the only thing I'd try to help with is the showering. Not physically. I'm not getting in there.

My mom got pneumonia and then fell a couple weeks ago so she's had a rough time lately. She refused her first shower post fall and I didn't want her to get out of the next one so I did tell the aid I'd be there at shower time.

I didn't baby her nor was I forceful. I simply told her it was time for a shower and while she did that I'd go make a run for a green tea frappuccino (her favorite) and I'd give her a foot massage afterwards. Success! Yes, I bribed her but it worked.

Showers shouldn't be something that's presented as an option. The staff should know this and know how to persuade her. "Time for a shower. I have the room warm for you." Tell them to have a fresh set of clothes out and show them to her and ask if she would prefer to wear this or something else after her shower. Does she like sweets? Have them tell her they will get her something after her shower and is there something in particular she would like? Tell them to offer a reward at the end of it for her.

You shouldn't have to be there at all to get these things done.

If my mom ends up refusing again I'm going to get to the bottom of it and find out why. Does she feel she doesn't need one? I'll explain why she does. Is she embarrassed? Is it uncomfortable? Does the shower chair hurt? Does she get too cold? Is she afraid of falling? I'm going to ask and see what feedback she provides.

The other stuff...eating and PT...let it go. No big deal.
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Your situation is almost exactly the same as my MIL's. She had memory loss and depression. We moved her to AL and she eventually refused to go out of her room to eat, participate in anything or get out of bed. We got PT for her, and did lots of cajoling and working with the staff, to no avail. The staff cannot force her out of bed, or to bathe or to eat or to take meds. Back then she weighed 185 lbs so became a 2-person assist. We went there often and even wrote a huge poster directly across from her bed that said, "Mom, please do what the staff asks you so that you can get the best care possible." And my husband signed it and we told the staff to point to it when she didn't cooperate. None of it made any difference.

She is now in LTC in the same facility. The good news is she qualified for Medicaid. She has since forgotten that she chose to not get out of bed but now she's lost all her mobility. She will now go eat in the dining room and participate in activities but the staff has to Hoyer lift her out of bed for everything. She even has a special wheelchair because she can't sit up straight and has chronic back pain. This whole journey started in 2016. She'll be 89 years old in July.

All this to say it is true the staff can only do so much. Apply for Medicaid for her. If you're not her legal guardian then allow the social workers to start the process of getting her a court-assigned one. Then walk away and focus on your husband, who should have been your #1 priority all this time. I'm hoping you haven't been paying for her care. It's not over for your Mom but if she goes into LTC on Medicaid then she's as settled as she'll ever be and you can move on.
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I think Mom now needs LTC. Her care is just too much forva MC situation.
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AlvaDeer May 25, 2024
Memory care does typically support the dying, and it sounds as though this mother is doing that sooner than later. Especially with Hospice care she would be fine in MC. They are almost a nursing unit in many ways unless skin breakdown and other things occur. Just imho.
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You've already gotten a lot of great advice. I would add that she should be a DNR/DNI - do not resuscitate and do not intubate. I don't know the laws of your state but also look into a POLST - physician orders for life-sustaining treatment, which are orders intended for people who are seriously ill. The physician at the memory care can help you setup goals of care for her and give you a better idea of where she is in terms of "the end".
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