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Two years ago I moved my mom into an ALF 40 miles away. At the time she was able to ambulate somewhat, but was a fall risk because she refused to use her walker. Over time she has declined until she is essentially bedridden and her dementia has worsened. She is on hospice care, is in diapers and requires assistance eating. Before she became confined to her bed the aides helped her get dressed each morning and helped her into her pjs each night. Now I have discovered that her clothes may only get changed once or twice a week and she sleeps in whatever she happens to be wearing. I placed a "granny cam" in her room with the approval of the director a week ago. Over the weekend her diaper was changed twice a day and never at night. The hospice CNA gave her a bath Friday and changed her shirt, which she then wore & slept in until Monday morning when it was changed. One of my friends has suggested that I am expecting too much by wanting her shirt changed daily (she doesn't wear pants because of the diaper & the fact that she is in bed). I've been told that as long as she's getting her meals and diaper changed I should be satisfied. Am I wrong to want her in clean clothes?

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Isn't it odd that in some states (including mine) Medicaid will not pay for AL, only NH, when AL is often less money?
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Reply to mally1
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I really appreciate everyone's suggestions. This is really a wonderful place for ideas and support. It does seem as if an ALF is not an ideal placement, but the nearest nursing home is a dark, depressing place with a cacophony of wailing & moaning from the rooms, constant noise from the loudspeakers and slack-faced residents parked in wheelchairs in front of the tv. Others farther away are not much better. The ALF is also about $3000 a month cheaper than the nursing home, which is a consideration since we self-pay. My mom was mobile when she moved into AL, but has declined rapidly. They have less than 20 residents including a few who are bedridden and on hospice. They work with hospice to care for the residents from the time they move in until end-of-life. The friend who told me I was expecting too much had her mom in a nursing home, where some patients go weeks without a bath or change of clothes. I don't want that for my mom. Hopefully things are better in other places. In the rural area we are in, there isn't a lot of choice.
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Reply to LaBlueEyes
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LaBlueEyes: I agree with BarbBrooklyn. Sounds like your mom needs more care than AL usually provide and should be in a nursing home at this point.
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Reply to peace416
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Changing briefs (prefer that to diapers) should be done every 2 hours. Wet, dry, soiled. The act of changing also re positions a person that is in bed or in a wheelchair all the time. Doing this prevents pressure sores.
(Have YOU checked for pressure sores?)
Changing clothes is not as important as changing a brief, soiled bedding if the clothes are not soiled.
When my Husband was confined to bed I cut the back of his shirts so that I could slip his arms in and that way it looked like he had a shirt on but there was no extra fabric at his back. I did the same with his pants, I cut out the seat so that I could pull them up and tuck around his waist so it looked like he had pants on but again no excess fabric.
It is extra layers of fabric and the wrinkles in the fabric that can cause marks and irritation to the skin. So the less fabric the better.
So as long as Mom's dignity is in place, she is covered when people come into the room, having a gown, or even a light blanket or sheet over her is enough. If she seems cold then another blanket but the less fabric under the better.

I am surprised that they are doing this in Assisted Living, usually this is getting to Memory Care or Skilled Nursing. (memory care will do more than AL) Often in AL or even Memory Care depending on the regulations they may not be able to use equipment to move your Mom and if this is the case it might be best to transfer her to a Skilled Nursing facility where they can use equipment.
I should say many facilities will keep a resident once they are on Hospice so the fact that they are not asking for a transfer this might be the reason
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Reply to Grandma1954
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Your mother sounds as though she requires nursing home care, not AL care. AL is by definition, care for those who can assist in their own care.
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Reply to BarbBrooklyn
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Something sounds wrong. I'd consider checking with an attorney or the Ombudsman for the facility.

My LO's hospice aid comes 3 days a week to bathe and change clothes of my LO. (Hospice nurse comes once a week.) The facility baths and changes her the other days. Her depends are changed every two hours. She is placed in her wheelchair that reclines, back if necessary, every morning.( Hospice provided it.) And her time in it is alternated with naps a couple of times per day. She has had no skin break down. They take her pants off when she's napping and put them back on when she gets back in the wheelchair. I know it's a lot of work, but, I can't imagine not keeping her clothes fresh. It's a matter of dignity and respect, as well as hygiene.
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Reply to Sunnygirl1
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NeedHelpWithMom Mar 11, 2019
Sunny,

I am looking into facilities for my mom. Assisted living close to me as I plan to see her often. You found a good one! I hope I do too. Any advice for me? Thanks for sharing your story with OP and us. I agree with your answer, especially about dignity.
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I’m rather surprised the Director allowed you to install a grannycam...they must have been confident their care is stellar. Which it’s not. Yes I would pitch a fit if Mom wasn’t changed every day. And if there’s a mess with food on her sweater, I expect it to be changed again! And changing briefs only twice a day again is very subpar. They’re just asking for UTIs. Why don’t they get her up and into a wheelchair for meals? I would get out your contract and ask the director exactly what service is provided. If the AL is not equipped or contracted for this kind of care, maybe she would be better off in an actual hospice facility? Or pay for extra CNAs to come in? Maybe you are expecting too much from an AL facility, but that doesn’t mean that your Mom doesn’t need better care, or that you should just be satisfied with the status quo.
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Reply to rocketjcat
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NeedHelpWithMom Mar 11, 2019
I guess it depends on how the specific facility is run, huh? Have to read the contract thoroughly.
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Hospice may give extra support but an AL is no different from any home, the majority of the care falls on the people who are actually there. I don't care what they may have promised, in my experience most AL's are not able to provide adequate end of life care; they don't have sufficient staff levels, they don't have readily available doctors who are experienced in end of life, they don't have the equipment. My mom was incontinent, frail, mostly immobile - in short she was as helpless as a newborn infancy - but at her nursing home she was placed in her wheelchair every day, taken to the dining room for all her meals where she was spoon fed, and she was given a tub bath twice a week right up until she was moved to the palliative room a few days before she died. If you and your family can not personally spend the time to make sure she is comfortable then consider hiring a caregiver for her, yes it will cost but it it will give you peace of mind and will no doubt be less than the cost of a nursing home.
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Reply to cwillie
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