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Well, I am back and thanks again to all who helped me with advice on placing hubby in nursing home and getting Medicaid. Almost done with the Medicaid process. It was finally filed by attorneys the other day. The nursing home he is in is also pretty ok. My question is how often should I be going to nursing home? Right now I go every single day and have only missed a few days due to my own mental stress or family matters. I usually stay 2-6 hours, varies every day. I take him outside for wheelchair rides, sit in sun, we sit in family room and watch TV, the usual things. He does not care to participate in any activities or outings. He has been in this home for almost 2 months now. He had another UTI a few weeks ago and started hallucinating so was in hospital for a few days too. Since he got back from hospital ten days ago, his personality is totally different. He has been on same story that the nursing home and staff are Communist and deal in drugs and will kill him since then. He fights with staff, spits at them, will not eat hardly ever, He refuses his meds all day and the poor staff has to try to find someone who works there he will take meds from. Hard job for them. His new "thing" is he now decided I was one of the spies or drug runners too and is constantly screaming at me, does not care who is listening. I do not challenge him, I let him say whatever but I feel pretty humiliated. Telling people I have boyfriend and some pretty nasty stories. I realize nobody believes him but it seems he is disturbing the whole nursing home. He has to be the loudest and nastiest one there now. Last night he told me to get the F word out of there and I did. Today I did not go but soon the calls will start with him looking for me. Hopefully they will take his phone away again. So, out of a simple question, I told you all a huge story, sorry. Should I still keep visiting daily? How does everyone else do this? He has Lewy Body and Vascular dementia and is 73. He cannot walk at all. He remembers everyone but does not remember anything from day before but remembers things from way back when only.

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When we initially placed my Dad (Lewy Body Dementia and Parkinson's Disease) in a nursing home, I took my Mom to visit him every day for the first three weeks or so. She would stay three or four hours. I would usually stay for an hour and then go run errands, etc. She was very "hands on", wanting to be there during the lunch hour so that she knew he was eating. It got to the point where he wouldn't eat while she was there because she was trying to make him eat, putting his food on the fork, etc. He also did not want to take part in any activities. It was finally suggested by a staff member, and I concurred, that Mom not visit during meal times. We began going over earlier in the morning and leaving before lunch. He began eating, sometimes on his own, sometimes with help from an aide. We stopped visiting every day -- trimmed it down to Sunday, Monday, Wednesday, Friday. Dad began to "socialize" a little bit, if you can call it that. He could barely get around, had to be in one of those PVC chairs, had the normal problems with LBD as far as hallucinations, delusions, etc. While I truly understand the need to see the dementia patient as often as possible, we found that spending less time with my Dad allowed him to branch out a little bit on his own. I think he was able to adjust more quickly once these scheduling changes were made, and began to look forward to my Mom's visits. Even with the mess his mind and brain were in, he felt he was being a burden to us. He wasn't a burden. But I think he felt that because we visited less, he was less of a burden. If that makes sense. It allowed his mind to get some rest, and possibly somewhat subdued the mental and physical problems he was having.
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The biggest issue here is not how often you should visit but how to improve the quality of his life. This disturbing behavior has happened since his hospitalization. Did they change meds? Did they use new meds while he was there?

My husband was always "worse" after a hospital stay, and then gradually recovered back to his baseline before the hospital. We can hope that your husband will go back to less disturbing behavior. Are you in touch with the doctor treating his dementia? I would not rely on the NH's doctor for this. (Even if you know the NH to have an excellent doctor. This is very specialized.)

This sudden behavior change could have happened just as easily if he went home from the hospital as when he went to the NH. You need to be his advocate no matter where he is. Each time my husband developed a new set of symptoms I was in contact with his neurologist and we worked at a treatment to reduce the symptoms. There may not be a perfect solution, but the attempt is worthwhile.

You definitely need some down time, some time away from him. You can do your advocating without actually being with him.

If his anxiety and paranoia can be reduced, reevaluate the frequency of your visits.
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Probably go with short and sweet with a mission to accomplish, like bringing clothes or filling a candy dish or even bringing a special meal. And, maybe ask them for a psych eval to consider a little medication, as long as you can trust them to look for side effects and take you input on how it is or is not affecting him.
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Definitely cut back on your visits. It's even possible that he's turned hostile toward you since you're the person he sees the most, and perhaps in some way he attributes his situation to your action. Given his delusions, he's unlikely to be able to reason that the placement is the best for him.

You also need some immediate down time and R & before you start crashing.
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When my mom was in a nursing home for rehab for 2 months or a little more, I went practically every day. Toward the end of her stay, I just couldn't do it anymore. 45 minutes to get there and back . . . 2 hours with her . . . I spent my whole life waiting to leave and exhausted from the visit.

I strongly suggest you limit your visits. Start going every other day right away. Then cut back to three times a week or so. And six hours? Lordy. A few hours, if that, is plenty in my opinion.

You're not doing him any favors by keeping him isolated from the activities going on -- and they probably have quite a few. Accept that he has a new life now. One neither one of you would have chosen, but reality nonetheless. Don't feel guilty. He wouldn't want you to if he were in his right mind. You probably know that in your heart. Now. Believe it in your head.
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In my area many times when placing someone in a facility family will be asked to not visit for a period of two weeks. This provides an adjustment time for the new resident and some down time for the caregiver. As Vegas said I also thing you should reduce the frequency and time of your visits. The constant change daily from facility caregiver to your visiting is probably confusing your husband while making staff jobs more difficult.

Take some time for you. Go out of town for a week or two and have some fun. Visit other family. Give the staff a chance to help him adjust to his new surroundings.
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I have no experience in having a loved one placed anywhere in a situation like this, but that won't stop me from commenting. So, I suggest cutting down on the frequency and length of the visits. The visits are for both of you. If they are stressing you out, cut back. Take some days off completely. Give your body a chance to rest and get your stress hormones lower. I would think that otherwise you are just going to be on edge too much and that's not going to be healthy for you. This should be seen as a period of transition, for your benefit if not his. He won't be back in your outside world. You need to straddle those worlds, not be entirely in his. Good luck.
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