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I am the primary caregiver for my mom, who is 85 and has dementia. I have done everything I can to support her at home so she could stay there as long as possible. This past June she had to go to the hospital, then needed rehab. I found a facility close to myself and my other siblings and decided that the best long term solution for her would be for her to transfer to the nursing home side of the rehab because she needs more care than we can realistically provide at this point. It was a difficult decision, and it isn't finalized yet (legal paperwork battles with nursing home). I spent the summer looking at every possible option...other nursing homes, assisted living facilities, 24 hr home care. I have a brother and sister who really wanted her to go home, and thought she didn't need 24 hr care. But they let me make the decision, and I felt she wasn't safe without 24 hr care. We can get her in AL for a year or two then she moves to Medicaid and she would have to go back to a nursing home b/c she surpasses the Medicaid threshold for the amount of income she has coming in. I don't think we can sustain home care financially either long term, and Medicaid does not cover home care. Right now my mom is on respite at the nursing home and I told them it's a transition period to see if both she and my siblings can buy in to the idea of her staying there. Now they ask to change her room from a rehab to a long term bed. My concern is that my mom is verbal and still social and understands quite a bit, and her roommate is nonverbal, not interactive. So my mom will get no stimulation. My bigger concern than that, however, is that her roommate screams and I know this will keep my mom awake and agitate her. The social worker said I was entitled to a hearing to express my concerns and when it happened, the director basically said, "I hear your concerns, we have to move her." There are many empty beds in the rehab section so I don't see an emergency. I explained about the buy in, said this wouldn't serve us well, and asked if we could put this off until she is off of respite (which we are paying for privately to the tune of $10,000). They moved her anyway and she is not happy. This is the closest nursing home to us and visits are very important to my mom but it makes me wonder if we should just give her a couple good years in assisted living or at home. Am I expecting too much in wanting them to listen to a family member and their concerns? I am just not sure what to do.

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Oh Rosie noisy room mates are far easier problems to solve than other disturbances.
Spend the night with Mom.
You will hear staff with loud voices.
Doors banging.
Porters bringing heaven knows what ever night at 4 am (Cheerfully)
Room mates getting changed (Push out that bed table, crank up the bed etc)
People being taken out to the ER.
The worst room is the one by the nurses station (Where we can keep a good eye on her)
Weeping and wailing relatives when some one dies.
I can go one and on.
Some of it is unavoidable but some of it is just stupidity.
A nursing home or hospital is not a pretty place to spend the night.
Then around 5am the kitchen springs into action and the smell of bacon cooking wafts in the windows and breakfast is not for another three hours!!!!!!! ----- boy could I use a cup of tea right NOW but there is only luke warm water on the night stand and just out of reach. nurse "neat and tidy" pushed it just too far away when she came to do the vitals at 6am or even earlier if she wanted to make sure she left bang on 7 when the shift changed. She has to get home fast because hubby went to work at 6 and her eldest is only 8.
Or maybe last night it was the Aide they just hired. She is only 58 but 100 lbs over weight and worst of all has been compensating for her early dementia for over five years now. She shouts because she thinks every one of the patients is stone deaf and anyway she can't hear too well herself. She barely squaked by getting her CNA last year. She was a RN in her country of origin but no hope of passing the exams here and her English is barely passable. She calls everyone "Darlik" but she actually has a heart of gold----------well whats left off it after the revolution..
Sorry to make this sound of no consequence Rosie but like ladee M been there seen all that. I really do see your dilema and kudos to you for making every effort to make Mom's last years as tolerable as possible. the only place you could have complete control is at home but can you afford help. (At least $10 an hour) so you can continue to fulfil all your other responsibilities and not burn out as have so many other have after a few months. Other family members have a nasty habit of disappearing even if they do offer to help at the begining. most have an aversion to dirty diapers or more pressing engagements. It's a hard life and you just have to do the best you can and make something work. Blessings
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Thanks Jeannegibbs for sharing your story, it really helps me to see where I am and am not being realistic. You make some really good points about night disturbances. A lot of good food for thought. Thanks to you all for taking the time. I feel so alone in my decision making often so I am so glad I found this forum for support. God bless you all for the care you give to others.
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umm ... my husband had 32 hours of in-home care. The original was 28 hours until he was evaluated. Don't we all wish we could edit our posts?

Here is something else to consider: What if you were to find another facility, private pay, who did not accept people with night disturbances. And after a year or two your mother developed night disturbances herself? She has dementia and it is really hard to predict exactly what symptoms she will develop or how well she will respond to treatment.

Sigh. Complicated doesn't begin to cover the situation!
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Mom is 94, has dementia, mobility problems, and pain upon moving. She has been one who wakes others up. She is on trazadone now and it helps her sleep through the night, but she still has nights when she wakes up and hollers for someone. (She does not remember to use the call button. Many dementia patients don't.) I spent nights in her room for a few weeks early on, to see if I could help work out a solution. During that time I often heard a woman way down in the other wing crying out at night. Occasionally I heard a man in a nearer room. I feel sorry for my mother's roommate, but the fact is, night disturbances seem frequent in a nursing home, and you don't have to be a roommate to be disturbed by them. As I see it, it is a fact of nursing home life. A private room would be an improvement, but no guarantee of totally peaceful nights. You might move mother to a place that is quiet when she moves in and within a month has two night-screamers.

I think the staff where my mother is do their best to treat the person who is making the disturbance with dignity and compassion. They usually bring my mother out near the nursing station and give her something to do, like folding towels, until her is tired enough and calm enough to return to bed. They never make it seem like a punishment, but they do try to minimize the length of time she continues to disturb others.

I guess the ideal roommates for the night-screamers would be deaf people. But what about the people who shout loud enough to be heard down the hall?

You are right in your original statement. Nursing Homes are very complicated living situations. The needs of one and the needs of many are being constantly balanced. And they are generally being balanced without regard to who is paying what, as far as I can see.

Moving a person with dementia from one environment to another is very hard on them and requires another long adjustment period with each move. If you don't think this is the right place for your mother, move her soon rather than letting her get adjusted there.

Medicaid bases the in-home care on an evaluation of need. My husband qualified for 28 hours a week. I chose to use that for 4 8-hour days. I kept him home with me for the 10 years he had dementia. My mother qualified for a few hours a day of in-home care, but it became clear that she needed more than could be provided in a home environment. She is thriving in the nursing home! (Caring for a parent or for a spouse are two VERY different situations, in my opinion.)

You have to decide what is the best place (of all the less-than-perfect choices) for mother, and then advocate to make the best of it. I don't suppose you are going to find perfection.
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Thanks to you all for your thoughts. MaggieMarshall I needed that validation to push for what she needs. I guess the reason I bring up the question is I don't want to be naiive and think it will be better at another place, and keep transitioning mom and find the same roommate (or other) issue there. I guess I don't know until I try...but if in the end the same issues exist everywhere, I don't want to keep moving her...dementia is confusing enough for her. Just want to know what's a realistic expectation
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They don't want to take up a rehab bed with her because she's not getting rehab. It's better financially for them to have a rehab patient in her bed and have her on the permanent floor she'll be assigned paying full boat. It's all about the money.

Rehab (at least at the nursing home mom was at when she broke her hip) entails three sessions a week EACH from an occupational, physical and speech therapist. With room and rehab charges covered 100% by Medicare. If mom is taking up a bed and not getting rehab, they feel they can better optimize bed use if they move her and get someone in there that IS.

If my mom were bunking with someone who kept her awake at night or disturbed her and I were paying $10K a month? She'd be moved in a week -- either to a new room or a new nursing home.

She has has the gold make the rules. Private pay earns just about anything you want. Somewhere.
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Jeannegibbs that was in the rehab section...but they were fine to have her all this time on respite in the rehab section and her respite period still isn't up. Now they say rehab bed isn't respite bed but for 2 weeks it's been no issue. So I'm confused. The private room idea is a good one. The only private room they have now is far from nursing station and they say they don't want her that far b/c she is a fall risk (she is very minimal risk). They tell me they have roommate changes all the time and they are always willing to work with families but they are not working with me on this. Medicaid will only cover in home care maybe 1.5 hours a day I'm told? Is that correct?
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Why wouldn't they let her finish out the respite period she is private-paying for? Was that in the rehab part of the facility? I'm confused.

Are there any private rooms available? They would cost more, of course, and she would need Medicaid sooner, then she would have to move. But it might buy her a better experience for the immediate term.

(Medicaid actually does cover in-home care, by the way, but not at a 24-hour-per-day level.)
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My mom was in AL and while there was usually a movie or activity after dinner, few of the residents participated. I think they were ready to just hunker down for the evening. I don't know that you'll find a lot of activities in the evening at an AL or nursing home.
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There are activities and she is not in her room all day. But there are down times after dinner until bed and those hours get long. I guess the bigger picture is the potential for her being kept awake and them really not being willing to bend when we are private pay...makes me worried what decisions they will make when she is Medicaid. Just not sure if all are this inflexible or if I should be looking elsewhere.
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Are there activities each day? Your mom should not be staying in her room with roommate all day.
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Assisted Living would only work for her if she can get to the dining hall and she is not bowel incontinent. That sounds pretty simple, but if she can't tell time or find her way to her table and back to her room, she is not a candidate. Our mom fell went to the ER and could not go back to assisted living until she met ambulatory goals in rehab.
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