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My mother is in a NH, post-stroke and with vascular dementia. She is wheelchair-bound and needs total assistance with toileting. She also thinks she needs to go to the bathroom extremely frequently. Her cognition has worsened rapidly in recent months and she now seems to have forgotten how to call for help (she has a remote with a call button but does not recognize it; a hand-held bell also did not help). She will sometimes yell loudly when she needs something but she seems to be forgetting how to do that as well. The strange thing is that she still (sometimes) remembers how to call me and wants me to come to the NH to help with whatever she needs. No amount of "coaching" by me while we are on the phone helps. She just gets panicky. Any suggestions for how to deal with this? I sometimes just end up calling the nurses' station myself (they are not easy to reach though) and asking them to go into her room, but that cannot be the solution all the time. Thanks.

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From your description I'm 99% sure that she is wearing an incontinence brief and is toileted seldom if at all. You hear a lot of complaints about the nursing homes that crowd everyone together near the nurse's station but the reality is that this is how staff can keep an eye on everyone when they can no longer advocate for themselves, leaving those who are severely physically and/or cognitively impaired in the privacy of their own rooms means nobody puts eyes on them between scheduled checks, it's a trade off.
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You need to talk to the DON and see what can be done. I agree, she is in a diaper. Please remember that what people with Dementia say is not always the case. A nurse could be checking on her every so often. Why is she not kept in the common area. My Mom was and she was in a wheelchair. I did not want her left alone in her room. Even if she could not participate in activities, she enjoyed watching others.
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SplitSecond Feb 2023
Thanks, JoAnn. I did speak with the DON - they suggested the hand bell, which did not help. Keeping her in the common area would be good for her in so many ways, but she absolutely refuses to leave her room. It used to be that she would be happy for me to take her to some place else at the facility, but now she does not want to leave even with me. Except to get her bi-weekly shower, she has literally not left her room for months.
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Your Mom is one of many individuals there with her own way of "being" now, and her own needs. Nursing homes and other facilities all have care plans, and it is truly important that you have a meeting initially to discuss what you know of Moms needs and behaviors. I suggest you get in touch with the nursing staff and discuss this with them, and try to arrange a meeting. If you need to go to administation and ask them how to work together with them on a care plan for your Mom. I sure wish you the best of luck.
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SplitSecond Feb 2023
Thank you, Alva. I have care plan meetings with her team every 90 days and sometimes I (or they) reach out in between to discuss various concerns. I did make them aware of this issue recently, and their suggestion was to give her the hand bell that she could ring when she needed something. Unfortunately, she does not remember it's there and/or how to use it. The remote with the call button is always right in front of her but she says she does not know what it is and/or cannot find it. Again, strangely, she usually still knows how to call me on her phone - but the call button is a mystery to her. I think I need to make sure they just check on her every hour or so and ask if she wants to go to the bathroom, though chances are good she will refuse to go if they suggest it and I don't think that will prevent her thinking that she needs to go in between. Getting help with toileting is the biggest issue for her, but it also upsets me that if she needs anything at all (a glass of water, a sweater, etc.) she is unable to ask for it.
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A hand bell serves about the same purpose as a call button: nothing. An elder with advanced dementia is NOT going to remember to use either one. But using a phone is part of her long term muscle memory, and why she can call you. No matter what instructions you give her, they're unlikely to register for any length of time at all.

Which is why the care plan HAS to include getting her up, dressed, and OUT of her room every morning where the staff can see her. Then she has a cue to ask for help and/or the staff ask HER every 2 hours about going to the bathroom. If shes toileted every 2 hours while wearing briefs, that should do the trick.

If OCD and panic set in regularly, ask her PCP about a mild sedative like Ativan .25mgs. That can be VERY useful in getting her off the kick of "having" to use the toilet constantly.

I'd also consider having mom evaluated for hospice if she continues to decline, as she can forget how to swallow at some point. My mother was in the same position as yours is now. Wheelchair bound and insistent on getting on and off the toilet herself bc she thought she could. She fell 95x from thinking she could walk and trying to get up from the wheelchair, toilet or bed. She fell 45x while living in Memory Care, and 50x while living in regular AL due to sheer stubbornness. I couldn't afford to hire her a companion, nor do I think she wanted one. Being that the girls got her up and dressed, cleaned up and wheeled into the activity room every day, that gave her plenty of others to canoodle with AND caregivers in constant view to see to her needs.

Wishing you the best of luck with a difficult situation
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SplitSecond Mar 2023
Thanks for taking the time to reply. You are totally right about the hand bell and the call button. They are just not a part of her repertoire. And I agree that spending time out of the room would be good for her, both in terms of staff attention and socialization, but she totally refuses. She has never been social, and now spending time around other people would be too overwhelming and is sadly totally out of the question for her. She has been evaluated for hospice but is not yet eligible. She is on palliative care.

One other note: she had been on Ativan for quite a while and her anxiety was through the roof. Her geriatric psychiatrist kept fiddling with the dosage and nothing helped. So he just weaned her off of it (while increasing her Seroquel dosage and putting her on a low dose of depakote) and all of the sudden she is much calmer. One of her nurses said that she has seen this with other residents -- that the Ativan can have the opposite, rebound effect in some people. Who knew? So, while she still cannot really remember how to ask for help, the panic she had felt before seems to have dissipated - at least for now. Hoping the information about Ativan can help others.
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Most people with dementia obsess about something. That may be why your mom seems to have to go so often. I think if you were able to visit daily you might see that she is not neglected, just imagines she is. Try to drop in at different times to get a feel for the attention she is getting or is not.
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Perhaps she can still call you because she has used a phone years before she ever had to use a call button? My husband now can not always tell the difference between the simple six button TV remote and the one lever remote for his lift chair. It is sad to see them losing the ability to use what we consider simple helps as the dementia progresses.
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Perhaps it's time to hire a nursing assistant just to take care of mom and her needs or move mom to a better nursing home. Mom is only guilty of getting old, she needs help, not resentful caretaking. Perhaps mom can relax with a companion.
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SplitSecond Mar 2023
I don't think the nursing home is to blame -- they are doing their best. And I don't think anybody is resentful -- both they and I are just trying to figure out how best to help her. We have tried private caregivers, who were extremely expensive, especially on top of the cost of the nursing home. If she had allowed them to provide her with companionship/stimulation it would have been well worth it, but she refuses to have them around her, so they ended up having to sit outside her room in the hallway and just wait to see whether she needed them to take her to the bathroom. $43 an hour was just too much for that to make sense in the long run.
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SplitSecond: Perhaps using a remote or a call bell is associated with short term memory, which unfortunately is non existent for her. Quite possibly, her care plan needs to be reevaluated.
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Hi. Since your mother cannot verbalize her needs it's up to you to take notice since you know her best and communicate with the cna's and nurse. My experience has been similar. I visited often, called and spoke to the nursing team in person or on the phone. Sometimes I had to make unplanned visits because my family member was lonely or was experiencing anxiety and needed comfort a staff member could not provide. Calling the nurse's station is a great idea because they can update you and let you know if she is okay and then you can determine what to do next. A lot of times the cna's distracted and rerouted her attention and the anxiety subsided. My family member hardly spoke either and I had to look her over and take notes. This is especially necessary when you notice they are not feeling well and may need hospital stay. Runny nose, labored breathing and confusion get overlooked if vital signs are good and the resident cannot discuss how they feel. My family member had to be hospitalized due to labored breathing that went overlooked.
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