Medication at assisted living
Mom was prescribed a cream for eczema to be given to her twice a day. Mom only uses it when she thinks she needs it. Staff tells me she is refusing it. When I talked with mom about this and tell her the doctor wants her to use this she tells me no one told me that. AL tells me they can’t force her to use it or take any medication. I have DPOA and a signed letter stating she is not able to make medical decisions for herself. I’ve been less than impressed with the dispensing if medication in general. Moms memory is not too bad(she struggled with executive functioning and anosognosia) and she still knows that her thyroid pill should not be taken with food and sometimes complains when they forget and just give it to her with breakfast. They gave her anti diarrhea medication in prune juice. I’ve complained. They tell me they need to know right away when this happens so they know who is doing it, but mom doesn’t tell me about it til days later and even then I’m not totally sure if she is just repeating something that happened one time or over and over. Mom told me she complained to the person in charge of medication the other day. I worry she is not going to get the care she needs because we are making trouble. Unfortunately most at the facility can’t remember enough to question anything so I feel like mom and I are causing trouble. We are in a very rural community so our options for AL are very limited. I just don’t know how to handle this.
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topical medicine that has to be applied is going to be particularly problematic, it requires so much more effort than giving a pill. I’d consider how bad the eczema is, and how critical this is or not to her overall care. Wish there were an easy answer, but some things just have to slide.
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Is this truly eczema or really bad dry skin, which is common in older adults? I would reevaluate soaps and after shower lotions or creams and avoid hot showers or baths.
Iris
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I guess my concern was just more general. How much effort should AL put into getting her to take it. Mom can be very grumpy and stubborn with me but AL tells me they have no problems with her at all. I can picture her telling them she doesn’t need it but I can’t imagine her telling them I refuse I won’t use it. There was no mention of her being angry or difficult, she simply said she didn’t want it. I know it’s just eczema cream, but shouldn’t I be notified as DPOA if medications prescribed by the doctor are not being taken/used. It all just makes me wonder. She needs reminders to shower. What if she says I don’t need a shower today. How long will it be before someone lets me know she isn’t showering? What if she tells them she doesn’t want them to clean her CPAP machine. They are supposed to remind her to wear her compression socks but I don’t see her wearing them. Maybe she just doesn’t want to??? It is still early on in this for her. She is end stage 4 maybe beginning stage 5. Later on I can see letting some of this slide. Maybe I’m just being too controlling?
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Refusing care is unfortunately very common and is likely to get worse, not better, with time. My partner is late stage 6 now and will not let anyone but me help her clean up, bathe, or change clothes. So we manage to get those things done about once a week. She is still partially continent, so i change her Depends once a day right now, this will be a gamechanger when it gets worse. There's no dental hygiene whatsoever. Fortunately most of the time she'll take her meds without difficulty, though we've had an issue with that twice this week. Long way of saying that yes, i think you have to let a lot of things go that you never anticipated.
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This sounds exactly like my mom's situation toward the end. AL is based on the premise that people still have the capacity to make choices; a good AL will have people with the skills to steer them toward the right things, but that's not always a given. My mom didn't remember things correctly, believed with her heart and soul that a particular person did a particular thing "today," and then I'd learn that the person was on vacation and hadn't been there in a week. Looking back at it, with the perspective of time (she passed away in 2021), I would choose my battles a little differently.
An idea: can you have a chat with - who? shift supervisor, nurse, whoever seems to be in charge of the CNAs who actually pass the meds and do the cares - and ask what their facility's policy is around "suggesting" that someone do something they've refused? there's a funny story about my mom and the shower, but I"ll spare you. She would refuse things occasionally and then she would forget she had refused and then ask why "the girl" hadn't come to put her ted hose on. She would also refuse things when she didn't like the person or didn't like they way they did things, and we had to have some conversations about how new staff have to learn their job and they might not be perfect right away so she needed to be patient and communicate with them nicely if there's a certain way she'd like them to help her. She had never had anyone help her with personal care in her life (other than when she had her babies in the hospital) so she had no idea how to act. Sorry, digression!
I would guess the AL staff have been coached not to persuade people to do things once they've refused, and not play the "your doctor says you have to…" card if it's going to make someone dig their heels in. W/r/t communicating with you when things aren't being done as directed - first ask when they would typically call you to talk about refusing meds or cares, and at the same time, keep track of the times you learn after the fact that they should have contacted you. They're required to report things like falls to you, but probably not things like ted hose or showers, though those should be discussed at an IEP meeting or in a conversation when you stop by.
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You are overestimating your PWD. It's not that she won't do this or that, it's that she can't do this or that, because she is losing her executive functions.
No matter what she may think she wants to do, or says she wants to do, she just can't. Her brain can't. Asking questions like "do you want to take your medicine?" results in a "no!" The confused mind says "no!"
PWDs should not be responsible for making serious decisions. Anything important should be done for them, because they just can't by themselves.
Iris
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That is my point. I have a document signed by two doctors saying she can’t make these decisions. But AL just tells me she doesn’t want to use the cream. Isn’t that why she is there, so someone can make sure she does what she needs to? It’s not like she is throwing it at them and screaming obscenities.
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No, assisted living doesn't do what you are asking for. Assisted living is like a hotel, they only do what the resident tells them to do. At a memory care facility, the staff knows how to gently overcome PWD resistance.
Iris
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@H1235
Ditto what @Iris L. said. It doesn't sound as though she is properly placed at this point. A hospitality model AL assumes personal agency and the assumption of consequences for refusing care. If 2 physicians have deemed her incompetent to make them, then she is beyond AL and would be better served in a higher acuity AC setting. That said, the PWD who tend to populate MCFs tend to be in the later stages 5-7 meaning she might not have many same-stage peers in a MCF because more of these PWD are still at home with spouses/family and HHAs.
In a MCF, they generally have ways of overcoming resistance to care. When dad was still at home, everything was a battle of wills— taking his meds, eating, moving around, hygiene, and hydration triggered an automatic "no" like some petulant toddler. He was much more cooperative with his aides and got better care from them.
I'm pretty breezy about medications in the later stages of the disease. With dad we dropped many of his meds when he was in MC and prioritized pain, breathing and psychoactive meds dropping his BP med (he was running low), statin and metformin. I would prioritize levothyroxine, especially if she's on a higher dose. Ideally, this is given on an empty stomach. According to my endo, 30 minutes before meals is enough for most folks but some of his older patients take it as a bedtime medication 2+ hours after eating. If they do mess up, absorption is reduced by up to 20%.
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My mom lives ( formerly with my late step-dad) in an AL. One with a nurse on site 40+ hours a week. It includes medication management. The staff comes in 3 times a day to dispense her medication. That means they take it out of the locked cabinet, break the blister pack seal, and hand it to her. If she’s asleep or out of the room, they place it on her kitchen table. She’s cooperative and normally does. However they aren’t going to badger her about it. Some staff are better about working around the word no. Others are not the persuasive type and aren’t going to confront her if she says no. Plus the staff are not nurses, they are resident assistants. They aren’t technically allowed to push medications beyond handing it to them.
I’m of the same opinion as the others. If you want more active medication management, you need to look to MC.In my mom’s case, she’s already stated she doesn’t want much in the way of medical treatment beyond comfort care. She is 86. If she turns down her medication, I’m not forcing it on her.
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Thank you all for sharing your wisdom, I appreciate it. She is definitely not ready for memory care being she is just end of stage 4. Her lack of memory issues (vascular dementia) just puts a different twist on things and makes it hard. She is always telling me how other residents are really nice, but they just don’t remember anything. She told me today that she gets xxx medicine on Monday and Friday and said they never gave it to her yesterday. She’s right she should get the medication on Monday and Friday and yesterday was friday. All showing she is on top of it, I don’t know what to think. I have not been impressed with staff. I think they are not used to being questioned about medication since most residents lack the memory to question mistakes. I talk with the director she tells me I need to call her and let her know there is a problem right away or she can’t do anything. But if mom doesn’t tell me til when there are not administrators in the building or even a week later… And if the staff signs off that they gave her the medication then what. There is one resident at the facility in a wheelchair and unable to feed himself. Mom tells me he slid out of the wheelchair one day at lunch(on a weekend) and staff had know idea what to do. When I looked into the place they said there would be no need for memory care they could handle everything and there would be no need to move her as things progress. I think the facility just want people even if they are not able to provide proper care. I will try to be more chill about all this, but this is not what I expected. Thanks again for your input.
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Is medication administration a required part of their services? You seem to be saying your mom would be fine taking her meds independently. Is that an option?
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She knows that particular medication needs to be used twice a week, she knows the thyroid pills needs to be taken in the morning before food( she has been taking it for 40 years). She knows she takes a powder for diarrhea and that she should not take it with her other medication(which they have given to her with other medication on more that one occasion)but would have no idea how to time it(need to be x number of hours before other meds and x number of hours after). She takes almost 15 different medications. When I put them in pill dispensers when she lived alone there was almost always one or two days worth of pills that she would forget to take and I found pills all over the house that I believe she probably dropped. She also needs an insulin shot once a day which she has never done herself ( added since she was diagnosed with dementia) and I don’t think she is able to do that, although she knows she should have it every evening. Of the pills that are taken in the morning and evening I doubt she would notice any missing or extra pills. So she knows just enough to recognize some problems, but not enough to manage it herself.
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Ah, it's a difficult place to be. I wonder if talking to her providers could simplify the medication regime. That is a lot to manage, and the staff helping residents with meds are not typically highly trained nurses, but rushed medication aides.
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It would be good to find the contract and go over it carefully to see just what you are paying for.
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My partner also takes a lot of meds (or did in the past), and it's hard to stay on top of it. It does sound like maybe a sitdown with her docs might be helpful to see what could possibly be eliminated at this juncture. I would also point out that you can't take her word for it that she didn't get her Friday meds- she says she didn't, but maybe her memory isn't reliable here?
Our MC has a program called ShedMeds deliberately aimed at simplifying regimens and eliminating unnecessary drugs and supplements. It's a good thing that i was glad to see implemented. Changes are only made with the family's input however.
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It’s just frustrating to think of simplifying medications to make things easier for staff when she is paying a small fortune to live there. In later stages I can understand this, but at this stage not so much. She is also paying extra for a more complicated medication schedule. I feel like it should be on them to get it right. I’ve seen mistakes myself, so when mom tells me they forgot something it’s reasonable. I do realize I can’t totally trust her memory of not receiving the medication. That’s part of what is so frustrating. Mom also gets really upset and concerned when mistakes are made, adding to her worries and causing a lack of trust with the staff. It’s so hard to know how to navigate all of this. Thanks for the input.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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