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lisatrovato Asked September 2013

Mom has been living on a dementia floor of a nursing home for a year. They want me to consider paying for private aides. Anyone else had this?

Mom doesn't always take direction well. I think this is due to a combination of meds and the dementia. She needs additional supervision. They do not provide one on one care. I spend two evenings a week at the nursing home. I am at my wits end with other responsibilites and work. I can't spend anymore time at the nursing home, and I am not in a position to afford private care. She is on a dementia floor. I am loathe to think about moving her somewhere else. I think it will be more of the same. Has anyone else had this problem? For all the money that is being paid for her care, why can't they figure out a way to properly care for her? Any suggestions would be greatly appreciated...I have already had a meeting with the nursing home care giving team. They seem to be at a loss for what to do....

jeannegibbs Sep 2013
I, too, am surprised that a dementia floor can't handle this kind of wandering. I thought that was pretty standard behavior in AD.

lisatrovato Sep 2013
Ann, thank you for your input.Mom does the same thing, only staff does not see it happen all the time , and can not be everywhere at all times. I have seen patients shouting at each other, and on rare occasion, push each other. I think they are afraid that something might happen, possibly someone get hurt....Maybe the dementia unit should have more staff? I know that it is probably staffed according to NY State requirements, but it doesn't appear to be enough. I would think that the state is certainly paying the home enough to at least provide adequate supervision, especially when medication is limited. I had to spend down mom's money before she went on medicaid. I paid over $15,000 a month to the nursing home until mom
was eligible. Why does that not pay for proper care? I am not sure how much control I have over the situation as a whole. I have been advocating for mom, but the options seem limited.

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ann1958 Sep 2013
I'm surprised the staff can't handle simple wandering issues. When my mother was in the dementia unit, she wandered all the time. So did a lot of the other residents. Someone might accidentally take her shoes or one of her "things", but then she did the same thing. Sometimes my Dad would find her in another resident's bed. But sometimes another resident would wander into hers too. They would simply forget which space was theirs. Where my FIL lives now, some residents do enter his room because they think it is theirs. While it does upset him, he tells them off. He shares a two bedroom unit with another resident. The other resident kept telling my FIL to get out of his room, and my FIL threated to call the cops on him. Eventually it settled down and everyone figured out their own space. I guess from what I've seen, it seems pretty normal in a dementia unit for them to wander into a space that is someone else's.

lisatrovato Sep 2013
Thank you all for the suggestions...I am going to see about possibly a nursing student or someone being able to watch mom...She is very "inquisitive" opening doors, possibly going into another patient's room and and lots of wandering. They are concerned that she will get in another patients "space" and that something might happen. The reactions of the patients in a dementia floor are very unpredictable. The psychiatrist says that there are no other meds to try, and that in NY patients with dementia diagnosis may not be given certain drugs..I don't know if I can find a volunteer agency or some very inexpensive supplemental care...I am also trying my daughter through college. Anyway, I certainly appreciate all of the support. She just seems to need to wander about and have additional supervision. She will listen to me, but not always so with the nursing home staff...

jeannegibbs Sep 2013
I agree with Nancy that her doctor should be consulted about whatever the problem behavior is.

Can Mom pay for additional aides out of her assets or income?

I have a friend whose father had a personal care attendant 40 hours a week in his nursing home. This was paid for out of his insurance.

Nursing homes can seldom provide one-on-one care, and that sometimes seems to be what some dementia patients need. If Mom (not you) cannot afford this, have additional meetings with her care team, with input from her doctor if possible. What are the alternatives are available? Is there a particular time of day when extra help is needed? Are there any volunteer organizations that might be able to cover those hours?

Another possibility is additional training for the staff that is there. Mom doesn't take direction well. This must be common among dementia patients. Unfortunately the time the staff can spend with any one patient is limited, but perhaps some refresher training could help them be more effective in the time they do have. If you suggest this, be very careful to offer it as a constructive suggestion and avoid sounding like you are criticizing. You want to work together as a team to come up with the best solutions ... not set up an adversarial relationship.

My caregiver support group was recently contacted by a facility that was looking for a presentation about dementia. We contacted our national organization and they provided material, an outline, etc. Two of us are going to go provide a session. We LOVE that kind of request. This might be a way the nursing home could improve staff coping skills at very little cost.

My heart goes out to you all. This is a distressing challenge that happens frequently. I hope you some up with some satisfactory approaches. Please share with us what you try and what seems to work (if anything). We learn from each other.

pamstegma Sep 2013
A request for one-on-one indicates her behavior is uncontrollable and she often requires physical restraint to avoid chaos. It is time to have a serious sit-down with a Neurologist who can prescribe the proper medications to calm her down, so she doesn't need a personal handler.

NancyH Sep 2013
I don't understand what the problem is. Is she wandering around trying to get out of the building, fighting with the aides? What's going on that the 'dementia' wing of a nursing home has to ask for extra help? Maybe you should be looking for a different place. Talk to her doctor about changing the meds possibly.

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