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julidu Asked June 2014

Is it time to move her?

My mother in law (MIL ) is currently living in an Assisted Living Facility (ALF ). At this time she does nothing but watch TV and eat. I'm concerned that I may be working too hard to keep her there. I'm too close to the situation. The ALF is only a couple of minutes from my house. The next stage facility will be at least 15 to 20 minutes away.
In order to keep her taken care of I have had to order NO FOOD or meals in her room - so she has to walk a minimum of 3 times a day to the meal area. I now pay to have someone wash her hair and style it twice a week. Her nails every other week. I've asked the staff at the ALF to stop "asking" if she needs to go to the bathroom but every hour take her and vary when they bathe her so she can't refuse to get cleaned which she was doing. She now just sits there poo, urine in her pants doesn't matter. Si again I'm changing the plan of care. The only thing that can motivate her is a Frappé from McDonald's (HELLO UTI! Which she gets regularly because a. She sits in it and b. Her family constantly brings them to her despite me asking/telling them NO. She'll randomly call people and ask them to bring her 2. If they say no. She's either stop trying to talk to you, hang up or cry. She actually called me the day before Mother's Day to say I don't want a gift just a Frappé. When we visited with one she got 1 but told the grandkids to leave (11 & 6) she wanted 2 Frappé not 1. Sunday, she choked on her dinner (she is already on a mechanical soft diet). The staff told me she has been over stuffing her mouth. Unless someone sits with and tells not to. Unless its dessert and then nothing will stop her some stuffing it all until the plate is empty.

Obviously there is more small things but I can't help wondering it time?

sherry1anne Jun 2014
I'm a health nut and in the mornings I make a shake with raw spinach, blue berries, frozen strawberries, honey and rice milk (you could use whole milk for the nutrition and substitute honey with D-Robose available at the health food store). Toss in some ice cubes and yum. Even my 102 yo mother drinks them. It's not a frape, but it's delicious. Maybe that would satisfy her while giving good nutrition. (D-Ribos is one of the essential building blocks for the formation of ATP which is a necessary building block of the body. This can be depleted by physical stress and deplete the ATP in the heart & skeletal system.It is used by body builders to assist in muscle recovery. I think it should help the elderly build healthy cells in the heart & skeletal system)

cher062 Jun 2014
Just a note that the AL although want to provide you with care they are first and for most a business trying to make money so they will want to keep a resident that pays full price as long as possible.

Honestly it sounds like she is ready for a nursing home type setting. Before my FIL passed away this past Feb we had to move him from an AL memory unit to a nursing home. They kept telling us that they could care for him but as much as I wanted to believe it and loved the facility I could see that they really couldn't do what was needed he was there for 18 mos and within one month he had to be in diapers because the dementia just made it so he didn't even know he had soiled himself.

In Sept 2013 he was having breathing issues and a trip to the hospital was what it took for us to finally open our eyes and know we had to start looking for a new care arrangement. We were fortunate to find a great facility that had a bed for a Male become available right when we needed it but remember it can take as much as a couple of years to get a bed. If I were you I would start looking and get her on a wait list and if a bed becomes available then move her.

The nursing home we choose provided more medical care, required FIL to go to activities even if he just went and fell asleep at the activity. Assisted him with eating as near the end he had to have everything cut up very small so he wouldn't choke on the big pieces he was stuffing his mouth with.

Remember a lot of what she does is part of the disease and reason just isn't there. I would get rid of the phone and TV in her room Replace the TV with a Radio - it really isn't necessary for either as most places have a common space where they can go to watch TV. And if she needs to contact someone she can have the staff call on their phone. This way the staff can monitor how much she is requesting frappes etc. And everyone caring for her is in the loop of what she is doing.

After going down this road with my FIL I am definitely going to do things a lot differently for my MIL (who also has dementia and several other mental issues)
right now so long as she can toilet herself and bath herself with out soiling her pants and as long as she can use the microwave to reheat the meals I make in advance for her she and she isn't wandering aimlessly around the town can stay with us in our home. She is 80yo and if you meet her you think nice little old lady but that isn't always the case most of the time she can be very mean especially to me her primary care provider. I know we aren't going to try everything suggested to us for medical care either. We did that with FIL and he had a long and miserable and painful death that I wouldn't wish on anyone. If he had been a dog I would have put him down rather than have him go through that. So for MIL no more mammograms or other tests like that because we aren't going to do any major surgeries or treatments.

With her mind going as fast as it is even with meds I give it, if we are lucky, 2 more years at home and then she will need nursing care and she will go right to the nursing home her husband passed away in. One thing we did learn is that a lot of what we paid out of pocket for in the AL would have been covered by Medicare if it had been a Nursing Home so no AL is happening with MIL.

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sherry1anne Jun 2014
Have you checked for diabetes? The Frapes sound like a diabetic craving. Can the ALF refuse to allow her outside food?

gladimhere Jun 2014
In the US, AZO cranberry tablets are good.

Countrymouse Jun 2014
Does she like slush puppies? I'm just trying to think what else has that ice-cold, sweet, flavoursome thing going for it. It's probably a bit late to try to educate her palate, so it's a matter of finding something she enjoys that's not quite so catastrophically bad for her, would you say? When you say sitting in it, do you mean she spills the drink on herself and she's actually sitting on that? It's just with all that sugar, I'd be worrying about thrush and yeast infections too, if it's literally soaking through all her clothing.

Also are the drinks she's given at the NH fresh from the fridge? Tepid drinks aren't very appetising, I wonder if that's what's putting her off.

You should be able to buy the cranberry tablets (Seven Seas, if you have that brand, do a good basic one) over the counter, though of course you should let her doctor know first as with anything new.

julidu Jun 2014
Thank you everyone for all the support and information! I really like the smaller facility idea and am going to research our area on it. I'm also going to ask her doctor to order cranberry pills, great idea! But I think I'm going to lock my door today and try to get some rest.
The short story MIL does not drink water unless I'm standing there saying DRINK! She mostly drinks sweet tea at meals (few sips) and then nothing. So we had a dehydration problem, after much trial and error we fixed it. Normal fluid intake/out take. No infections, everything was good. My SIL introduced Frappé last year and we've had UTI's ever since. I went psycho on the family and banned them (per bladder specialist the high sugar, dairy and caffeine added to sitting in it bad combo). I think we have things straight and I move to Frappé in moderation and the infection came back.
If I can get her obessed with any other drink/ item we'd be great. I suspect my problem is my SIL comes in town and thinks one won't hurt. And we start all over...

sandandsun Jun 2014
All MIL's should be blessed with a DIL such as you! I hope, though it was a long day, you feel better about having spent the time talking with the professionals there at the ALF yesterday. Still not sure what the Frappe's have to do with the UTI's. I suspect it is more to do with less water intake and sitting in waste. The cranberries sound like a good idea. Either in juice, pill, or "candy" format. Maybe she would enjoy a little "cocktail" of cranberry juice and 7-up or soda water. I'm inclined to let her have the Frappe's, in moderation, as there isn't much she is enjoying right now. Thinking of you and sending strength for your journey.

Countrymouse Jun 2014
Freudian typo, Drkathy? :)

Seconded on the cranberry tablets, but I wouldn't want to claim miracles. I started my mother on them on the grounds that they couldn't possibly hurt and might help with prevention. No uti's, but then again no bubonic plague either...

Abagail Jun 2014
Move her into a smaller facility that has more one on one care, no phone in her room - you can call her and the staff will bring her the phone, or if she needs to make a call they will assist her in her call - this stops all the un-neccessary calls. Activities should be available in the main area and staff goes room to room to bring them out to participate - dining-room is supervised by staff and if assistance is needed in eating they are right there. A smaller facility has a more home like atmosphere and family members are welcomed at any time, but I find it easier to go for a short time, once a week, every other week, or if they are having a special event. It keeps the sanity for all.

julidu Jun 2014
I met with the ALF care coordinator and her doctors yesterday.... it was a long day. She has another UTI, which I knew only drinking Frappé from McDonald's will do that to you!

We are making changes to plan of care to fill these gaps. In addition, physical and occupational therapy for the next weeks. I discussed my concerns with the doctor and coordinator and she is fine. The ALF is confident they can still take care of her and she doesn't need a nursing home just yet. The doctor stressed that if she doesn't move more she will be there faster, but right now no. I also had my husband call his family to discuss the changes.

To everyone - a few discoveries I made. My MIL has been calling other relatives and asking them to bring her Frappé. If they say Yes, she says make it 2. I'll put the 2nd one in the fridge. If they say no she would start crying, telling them I've started being mean and not do things for her. Or she missed her grandkids and I don't let them come up. Some of the people called my husband, who didn't tell me because "I know it's not true and your busy enough" or they felt bad and did it. This was her entertainment. I made a schedule for the immediate family - my FIL visits on Sunday, I take supplies, need items on Tuesday, my husband on Thursday and the kids on one of these days. I can't fix my SIL and her family. Other members randomly visit. I check with the nurse every week to see how's it going. I was told we were a rare family that visited often and it was nice we were involved.
All I can do now is see how the changes work and move forward.

drkathy Jun 2014
OOPS - Good luck not food luck.

drkathy Jun 2014
Just a note on the UTI's. My Mom takes cranberry tablets each day and it seems to work. No UTI's for over a year. Do you have a "senior linkage line" or other agency that could help you "shop" for another facility. If it's not time now, it may be soon. It would also help you feel like you're doing something to fix the situation. Food luck.

vstefans Jun 2014
OK, her dementia has progressed to where she needs supervision for meals and a timed toileting program. Either the ALF can handle that or they can't. Some nursing homes won't do that much either, you need to make sure they would agree to that in the care plan. You might have to compromise and settle for diapering and frequent changes.

How exactly are the frappes leading to UTIs?

jeannegibbs Jun 2014
Assisted Living Facilities vary widely in the services they are willing to provide and the criteria for living there. Have a heart-to-heart conversation with the social worker where MIL is. Do they feel they can continue to meet her needs? Are there additional services they could provide, at an additional fee? Does she like it there and want to stay? Who has her POA? What is your husband's role? (I assume she is his mother.)

A facility at a greater level of care will be more expensive. Is that a factor?

What are her impairments? Have they gotten worse while she is in the ALF? How long has that been?

Provide more information and you'll probably get more specific suggestions.

Countrymouse Jun 2014
What do you know about the "next stage facility"? If it's a good one, and you think she would do well there, it's worth giving it serious thought anyway, isn't it? It certainly doesn't sound as if she's gaining much additional quality of life from soldiering on in ALF, and if the staff are even co-operating properly with your varied, pretty full schedule I should imagine they're getting a bit fed up with it.

Chicago1954 Jun 2014
My MIL's AL, is like a hotel. No way do they have patients in your mom's shape. But, the NH that my own mother is in, keeps her clean and dry and everyone goes to the dining room. There is a special table where a CNA, sits with everyone that might need assistance. I think that your mom does need moved to a good NH. She probably feels inferior to the rest of the residents.

gladimhere Jun 2014
From what you are saying I surprised ALF has not said she needs to move to nursing care. But it sounds as if she is getting help from many family members that are relieving staff responsibilities.

pamstegma Jun 2014
She's not coming out of her room because you are making yourself into her home entertainment center. And slowly, you are making yourself crazy. As long as the ALF is not saying she needs a full on NH, you are OK. So back off a little, our counselor said to go ONCE a week. Back off gradually and you may see her get out of her room more. She has trained you to be at her beckon call.
Untrain a little.

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