Mom is almost 85 and has Alzheimer's - triggered by the anesthetic during a 2016 hip replacement. She lived alone for 2+ years after that with my sister and me providing everything we could and getting her out of the house 4 times a week to eat.
We never succeeded in getting her to clean up/shower, though she desperately needed it. She got offended when we quietly, politely suggested it was time to bathe, change clothes. In her demented state, she said she had done those things, and also took care of her house, did laundry, cooked, etc. No, she did none of those things. (In a support group my sister and I attend, we learned she was "self-neglecting.")
So that and what we learned was a fractured leg bone resulted in a hospitalization, rehab and forever placement in a memory care facility this past January. It was time; we were beat. We chose a local company that operates five memory care homes in our area - 5 residents per house rather than a large, institutional place. Better caregiver-to-resident ratio, could cater more to her extremely difficult personality. This company rates very highly with the state and is subject to the same rules and regs as "brand names" in senior care.
In general, we siblings are pleased, but Mom is completely miserable. We expected this; she has no idea anything is wrong with her and understands nothing of what's going on. Doesn't even remember she broke a hip. She's miserable anywhere but home (where she was also miserable).
So yesterday being Mother's Day, we thought we'd take her to lunch and met our brother halfway - about a 1 hr drive. We asked the caregivers to try to give her a shower or get her cleaned up beforehand because she desperately needed it. They tried but Mom was having none of it. Fought so hard against it she banged her wrist against something, tore her fragile skin, and bled everywhere, which they bandaged up. We learned about that in the morning. By the time we got there to pick her up, she didn't remember the fracas, but it was obvious she had not bathed. The staff felt bad they couldn't get it done. Blood, mysterious stains, and other stuff all over her shirt. I cannot blame the staff for this - Mom is stubborn, obstinate and - I learned on this site, probably suffers anosognosia. In short, yesterday was rather miserable and we couldn't get her back there fast enough. Which is when things really went downhill.
In bringing her back to the home, she cried and had fits that she wasn't going home. She was grasping at us, crying, slamming her fists, etc., in frustration. My sister and I got out as fast as we could, leaving the poor CNA on staff to deal with her anger. But we were totally spent.
Part of this is venting...part is asking for your secrets to get someone to WASH?? I'm very concerned she's going to get a UTI (if she doesn't already have one) because it's very clear that's the center of the problem. She says she's very careful about that, but no, she isn't.
More info: she HATES pills and doctors. Doesn't listen or want their advice. She's racist and most of the house staff is non-Caucasian. I would just be grateful if she didn't stink so much. Dusting powder only covers so much. What can we do??
[Can I have a prize for most helpful response? 😬]
The thing is. It is perfectly true that a person ought not to be forced to do something. However. Coaxing, cajoling, persuading - NOTHING is going to make your mother agree to be showered or bathed.
And although it's fine for these things to be less frequent than her habit used to be, it is not fine for her hygiene to be neglected altogether.
It is even less fine for this to be pursued to the point where she sustains injury, even if the injury is accidental/self-inflicted.
What is running through my memory at the moment is the process employed on the first stroke ward my mother stayed in (briefly, thank God). And the point about this process is that consent was never an issue, because there was never a point at which she was consulted or could have objected.
It takes a team of three nursing assistants, they get in there, they are so fast and efficient, and they wield so much muscle power among them, that it's over in minutes before the person knows what is happening, pretty much. It isn't pretty, but it's efficient and you end up with a clean mother.
I have to tell you that I was whimpering and bleating in a corner while all this was going on until the lead aide turned round and said "do you want your mother washed or not?" So that was me told.
Anyway - the point is that this is about attitude, experience and sheer heft. The people in the nice family atmosphere place are not prepared to seize hold of your mother and get the job done, because they are following different ethics. I wonder if, ironically, and seeing that your mother's miserable whatever you do, she might in fact be more efficiently cared for in a more institutional setting.
What's going to be better about a NH setting is that there will be Behavioral staff (psychiatrist, behavioral team, what have you) who will be able to advise on the appropriate medication for your mother's agitation and possible depression. While meds are not going to turn your feisty and uncooperative mother into a pussy cat, they might make everyone's life a little easier when it comes to hygiene, visits, daily life.
One rule that I learned early on in my mom's dementia? Bring the party to her. Don't take a person with dementia out of their facility, especially not in a private vehicle. My mother grabbed the steering wheel from my husband while we were on a highway. We were lucky that he was driving; had it been me, we'd all be dead.
Maybe wheel-chaired into a huge handicapped shower and squirted down in my clothes if necessary.
Permission? How could anyone in that mental state give permission?
Maybe I should write down giving my permission now, just in case, because I want to stay clean, always.
The injuries are a concern, whether they are accidental or not.
Choosing a more appropriate institutional setting as mentioned by CM may be the answer. The staff may have a match for your Mom's preferences.
Keep trying, it is very difficult.
Other options;
#1 humour (depends on your mother). One posfer here told her mother she smelt like the elephant house at the zoo! Her mother laughed & concented to a wash. Lol.
#2 pamper. Read this online. More for at home than in care settings. Don't use words like bath, shower, wash. "Mother It's time for your spa treatment". Out comes the super soft towels, scented candles & smelly soaps.
(I sure don't have time for that & my Mum was never a spa type...)
#3 don't ask, just do. Like the 3x carers but much more low key. Don't talk about it. Just move into the bathroom chatting about other stuff. Just start the process & see if you get away with it. May work some of the time.
#4 basin of water & wash cloths. A body part or two every day. Good for the shy/private types.
#5 study the situation. What's behind the refusal - fear, embarresment, pain? Especially after hip surgery: is the shower commode uncomfortable? Is the room cold? The water too cool? (My Mum hates being cold). Is the bathroom white & sterile looking? Add some colour! At respite they added a bright tissue box & coloured towels - more home like, less scary.
#6 control. Ask mother what Day she WILL wash. As you wish: Mondays & Fridays. That is actually working for my Mum at home after constant refusal at rehab. Trouble is she will probably argue it's not Monday... sigh.
Sorry for long post. I do sympathise.
Attended my family Easter & we all had to sit next to an open door, waaaay away from Mum.
My daughter is a RN in a rehab/nursing facility. I had complained that medical staff tend to ask "would you like to take a shower?" Of course a person suffering from Dementia says "No". My daughter said that you have to make them feel they made the decision. Like "Mrs E, wouldn't you feel better being clean and sweet smelling. A shower would make you feel so much better" more likely to do it.
Its also been mentioned on the site that showers tend to scare them. My Mom had a shower chair in her shower and a hand held shower head. I would rinse, soap up and then rinse her off. She was never under the shower constantly. Her bathroom was warmed up. It was done as quick as possible.
She stopped bathing at home, too. We got her giant "baby wipes" that we discovered while she was in the hospital and she used them for a while. Not a solution, but they helped. Now she won't even use those. She refuses shower chairs, stools, and other aides - those are for "old people." She used to love baths. Now she says she's taking them but there's no proof - not in used laundry and certainly not about her person. My gut tells me she'll get another UTI and land herself in the hospital.
1. Staff will remove the soiled clothing from her room every night once she is sleeping. Every visit, my husband and I gather up any clothing in her room we think might be dirty. We take it home, wash it and return it the next visit.
2. We make an appointment for her every week to have her hair washed and styled. (Salon is at the facility)She has only refused a few times.
3. Staff will keep trying to get my MIL to shower. When able, my husband and I will encourage her to shower while we are there. The staff will try to be as flexible as possible with this.
A few select aides have had better success than others cajoling her to shower. Unfortunately, the two good ones are no longer employed there.
She has worn a wig (that looks like a dead possum if you ask me) since I was a little girl. That thing should be burned somewhere as toxic waste. She never did like salons and since this is a home, there's not one onsite anyway.
My sister and I have had little success in getting her to bathe. She insists she has. But as everyone says, you can't argue or try logic with Alz victims. We keep bringing it up - she has the same answers. Sometimes, when the aides have success with it, they are so excited that they'll call us. I hope for one of those calls soon.
I went with an aide at home but we only had one 12 hours a week for 4 years. I did the rest. After the most recent fall last summer when they wouldn’t let her out of the rehab without continuous coverage we increased it too much to 7 days a week 9 hours a day. They just sit. A lot. It helped initially. But it didn’t help for more than 6 months, the “full time” aide got depressed and injured her knee twice. She also couldn’t drive. Her replacement worked three days then suddenly was hospitalized. It’s back to a mixed up schedule and I’m back up depressed and anxious. Never fails. We get through the the fall and winter and then it all falls apart in spring and summer and everybody quits or cuts back. I have no other family here. One brother comes East once a year but can’t be here more and it’s dwindled down from one week to one short weekend with him out part of it in the city. I for one wish I had your guts in getting mom to a good NH. My mom stopped PT (which always helped) because the PT said Medicare won’t continue to pay even with her drs orders. Also moms only got Medicare so there is a yearly cap I think.
we Had aides who could drive but my mom got robbed and so did I prior to all this. When it was only the 12 hrs a week and we tried upping it to 40. It was 4 different people and the one we thought might work (local, with a car, supposedly a CNA but turns out she lied) out is the one who stole. We had to prosecute. They caught her. She was stealing from other seniors at that agency too. We changed agencies. It helped as I said for 6 months. Mom only qualifies for meals on wheels but won’t eat food anymore and I don’t blame her. It’s gone down hill. Took her to local Senior center twice where Meals used to be good it was too much for her.
i feel for you. It’s too much no matter which way you go. But hang in there if you can.
If they are truly MC specialized unit staff and cannot get her bathed, I'd explore medication with her doctor to help with her agitation. I would imagine being that agitated would be mentally painful.
As to medications, she is refusing to take the 2 she is on about half the time. In our state, they cannot force her to take them; she must consent (completely asinine law for the mentally impaired). I'm sure she's in a great deal of mental pain. We arranged to have her speak with a neuropsychologist but she clammed up and wouldn't say a thing. She doesn't believe in Western medicine and can't swallow pills anyway. Some can be in liquid form but again, they cannot force her to take meds without consent. Just an ugly situation from all angles.
Last resort medication? Sendhelp mentioned secretly medicating for anxiety.. You said she regularly refuses meds but maybe discuss with the Doctor if there is anything to help calm her? And if so, in patch form (stuck upper mid back, out of her reach).
Nobody wants to be zonked out every day but sometimes people do not verbalise their pain well, or will not admit to pain unless feel very safe to do so.
As dementia progresses to later stages she will probably accept washing. I'm sorry for this journey you are on.
Take care of you.
I like the patch idea, though I don't know if these kinds of drugs come in patch form. But unless my sister or I went every time one needed changing, I'm not sure if it would work. She truly is germophobic and xenophobic - two problems we can't seem to circumvent.
There is one thing I'll say for medication...it's helping me!! I've been on anti-anxiety and anti-depressants for quite a while. Before this stuff started happening with her. To my mother, however, living "on pills" is not worth living.
Can a person be both incompetent and competent to make their own choices?
Have Mom sign a permission slip to have her meds administered in a smoothie.
A) If she cannot be allowed to give permission in writing, because she would not
understand....
B) How can she competently refuse (or choose) to not take her meds?
We have letters from two physicians declaring her as "incapacitated" and unable to make good decisions on her own behalf. That STILL doesn't allow medical personnel to "slip her the drugs." That's state law - not the choice of the place we have her.
We have been successful in doing the *wink, wink, nudge, nudge* thing with some of the staffers saying "We're fine with whatever you have to do to get the meds into her." And they've picked up on that. What they're doing could get them fired, but we're not saying a word about it. One of the drugs she has been prescribed is truly helping tamp down her anxiety; we can tell when she hasn't taken it. So if they're able to slip it to her with our knowledge but not hers, we support that.
There's no way she'd give permission to give her medicine unless she's in a (rare) decent mood. I don't know if that would be acceptable to the house administrators anyway. So far as we can, we'll keep with the winking and nudging! If that doesn't work, I'll take your permission slip suggestion!
Thanks!
I personally would never administer medication secretly to anyone, but I know of a wife who did this (for/to?) her husband.
The secret part comes in for people who have previously given permission but now have lost capacity to comply. It's certainly quite a moral dilemma.
With the meds, my mom did not refuse, but she was having a hard time getting them into her mouth...kept ending up on the floor. So the aides given them to her on a spoon with yogurt or applesauce. Much better!
Good luck!
As to the pills, we have found that Mom can tolerate the very small ones. And if my sister or I am there, we can generally get her to consent. However, we can't always be there. She has always had trouble swallowing - since I was a kid. Pudding and applesauce help but it's still the issue of her consent.
We only realized it afterward, but the shower in her room is quite small. She's claustrophobic, but she can still use the adult "baby" wipes and a washcloth dampened in the shower. She's simply refusing. You can lead a horse to water, but you can't push her in!
It isn't forcing, it's more... just not asking. Here we all are, here's the bath ready, in you get, rub-a-dub-dub, out you get, Bob's your uncle. The aides can take it in their stride, taking her consent for granted. I suppose, what it comes down to is that every time you pause to ask her permission, you're prompting her to hate it and refuse. Don't pause, and although she can still refuse and must still be listened to, it's harder for her to stop a process that is already well under way.
On MD, I was visiting her and she had one of those "timed air spritzers" on her kitchen counter, every 15 minutes it shoot a noxious spritz of some awful scent into the room. In her >800 sf apartment she has 4 or 5 of these, all different scents. It's horrible and to someone who is 'smell sensitive' will bring on a migraine in minutes.
Mom could see it bothered me so she allowed me to move it, and then I smelled HER. Don't know which was worse. I tried one more effort at begging her to let me and Sis have a day at her place, minimally clean the carpet which has been peed on umpteen times. She said she was fine and thought her place would smell better now I had replaced the bathroom plant (?)
I don't think she's showering but once a week. Even though she never breaks a sweat, she's on a lot of meds that make the urine and skin just smell funky.
I hate taking her out. People do smell her and do look at her funny and I am embarrassed for her.
We also determined after one trip outside the facility for a family event that we would not stress him out again with all that activity. In the future my husband and his sisters and brother would visit with the 3 grandsons for his birthday and us in-laws would join them the day after Christmas for a snack and family gift exchange at the facility. He was happy and once he got tired we could help him back to his room.
Let her lead at this time, don't correct, redirect. Don't command, suggest. Don't force, ask. Live in the past, and talk about good times. Accept the fact that after doing all of this, no progress is made. Most of all show her LOVE...even when she is mean and spiteful and says rotten things to you and about you...she does these things out of fear and she can not control it. She is losing her mind and nothing feels normal....
Mand sure you do research, communicate with her doctor and if you can, join a support group. It will help with the stress.
I've read others here and other forum pages saying "I'm going to make sure my children don't have to deal with by telling them to do what they need to do." That's great...but we don't know where our minds will be when it's time for the kids to make those choices. We may kick, punch, fight, scream...just like people like my Mom are doing now. The mind works in dreadfully mysterious ways. She told my sister years ago, "When I get senile, just put me in a home somewhere." Well, now that time has come, and we're not just gonna dump her off somewhere (none of us here advocate that, I'm sure), but she doesn't remember herself giving us permission!
you should also talk to the management of the home and find out why they are failing at bathing her. They should have “trained staff” that know all the tricks to get this done.
Regarding the bathing, I agree that the approach from the staff is more than half the battle. My Mom is in total care now. But I recognize the same frustrations prior to her being incapacitated.
I used to give options to Mom, but options I Controlled that would result in the desirable outcome. For example "Mom, would you like a bath now or after your breakfast?" I let her make the choice of time, then proceed with the choice made. If she resisted, I gently reminded her "You chose ______, so that is what we are doing today". We had to eventually resort completely to bed baths. But the approach can, again, be half the battle. I found that giving Mom a warm wash cloth to wipe her face and hands herself kept her occupied while the caregivers worked on washing the "difficult spots"! They now use this tactic, providing a warm washcloth and towel for her to wipe her face and hands herself, and good smelling lotion for her to rub into her hands.
With regards to medications, Mom has trouble swallowing pills, too. But the nurses crush them, and offer them in applesauce or chocolate pudding. They always say "we have something that will help you" or "we have your medicine for you to take". When the spoon of applesauce appears, Mom forgets "medicine" and takes it. There is no deception.....and it accomplishes the goal of getting her to voluntarily swallow what you know will truly help her.
Lastly, as a family, we had to give up taking Mom out for events. It was too stressful, and the reintroduction to her Memory Care facility became too upsetting for her AND for us. Instead, we found quite corners in the facility to meet for a special dessert or visit. Sometimes we arrange for a few family members to be waiting in the courtyard when we go for a walk....it is always such an unexpected surprise...then we spend time outside together, take a few photos, then print them up to share as new family celebrations.
What I truly discovered was that going to all the trouble to take her out, encounter all the stress it put on her, etc....was self-inflicted on me and unfair to her. She simply enjoys quality time with Us....family and friends....and she also enjoys introducing or showing others in her facility "her family", "her daughter", etc.....kind of a "show and tell" for her to integrate into her new community.
As your Mom progresses with her disease, she will forget and the resistance she puts up to seemingly everything you are trying to do to care for her will lessen, and eventually go away. I have to believe that those suffering with the challenges of dementia taking control of their minds are fighting with all of their strength to retain some control over their life. They try to make some sense of the world they are loosing touch with and are inadvertently hurting the ones trying to help them them most.
I am caregiver to my almost 93yo Dad in his home, plus managing Mom in her Nursing home, a registered nurse (but can not work due to caregiving), a Mom, an only daughter (so no siblings to help me). Thank you for sharing your frustrations.....it is good to know we are not alone in this journey, and hopefully can support each other in some meaningful way!
Thanks for sharing your experience with us.
The staff is trying to find creative ways to check for a UTI. When staff comes into her room, she usually screams at them to get out. An ARNP visits the house once a month and my sister (who has a more lenient work schedule than I do) tries to be there. Sometimes she cooperates, sometimes she doesn't. But I have no doubt with the next visit, the ARNP will notice what to me smells like infection and do what she can to do something about it. Heck, she may even prescribe something without doing the dipstick. I'd be on board with that.
I just want to go on record here (as I've done with my brother and sister) that if/when I get like this, roll my wheelchair out to the railroad track and wait! (kind of kidding, but not really!) At that point, my organs and whatnot will be more useful donated to others or to science.
Luckily, Mom has no issues like diabetes to contend with. Small blessing. I truly don't know how people deal with this alone and still try to have any kind of life. And as we Boomers get to that age, well, I can't help but see a bleak future.
Instead of relying on her incomplete cleaning, I often ask her to use, and help her to use, a product we got the last time she was in the hospital. It is wonderful. It's a "perineal cleanser," Aloe-Vesta Cleansing Foam. It can be used for body wash and shampoo. You simply spray an odorous area with the foam and remove it with a clean cloth. I dampen it. Very effective.
I haven't ordered it yet, but intend to do so. I hope they sell to individuals. If not, perhaps we can create a group!
It is made by ConvaTec, Inc, Greensboro, North Carolina: 1-800-422-8811 (on bottle)
"ConvaTec develops and manufactures therapies for the management of chronic conditions, with a focus on advanced wound care, ostomy care, continence and critical care and infusion devices. The Triad site is the company's Global Quality Headquarters."
The Triad site is the company's Global Quality Headquarters. www.convatec.com. 7815 National Service Road, Suite 600. Greensboro, NC 27409. Phone. (336) 855-5500 (at web site)
https://directory.ncbiotech.org/content/convatec-inc
Good luck, Judy.
As dementia progresses, seniors begin to experience the external world differently. The cognitive models related to sensory input begin to break down, and external stimuli can feel overwhelming. Many seniors become anxious when exposed to loud noises, flashing lights, or excessive visual clutter. For seniors vulnerable to overstimulation, water isn’t that different. These seniors are usually especially sensitive to showers, as any time spent beneath the stream of water can feel confusing and painful. While showers are a relaxing experience for many, to seniors with dementia, the water may feel like cascades of tiny needles. To counteract this fear, have your loved one take baths instead of showers. It’s also a good idea to go slow. Instead of making your loved one get into the bathtub all at once, allow him or her to sit beside the tub for a few minutes to acclimate. Gently clean your loved one’s hands, arms, or feet with a warm washcloth so he or she gets used to the feeling of water. If your loved one remains calm, have him or her step into the bath. In my book, the caregiver/s taking care of your mom have limited hands on experience, or like you eluded to, maybe one caregiver tried getting your loved-one to shower, and that my friend is a no no.
Professional caregivers with training and experience in caring for seniors with dementia are often able to employ several different techniques that calm anxiety. Hopefully this helps.
This is why, if it were me, I would find a way to slip some meds into this poor woman's food if that is the only way to get her to take medicine. If it calms her down and reduces her anger and anxiety, and makes it so people can help her (get her clean), then I don't see the harm in it.
I'm looking forward to the doped-up stupor personally. For me, not her! ;o)
You are so thoughtful and I am sure the NH staff appreciate it. Glad your mom is singing now. Great story! Thanks for sharing.
Just throwing this out there. Who knows where any of us will end up in life? I myself have always loved baths over showers. Should we write down somewhere all of the things that we love in case there are options for us wherever we are? I remember when touring a facility for mom the nurse showed me a large whirlpool tub that she said some residents enjoyed relaxing in.