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I know this forum is for caregivers, and I am not caregiving for my friend, however, thought maybe someone would insight into my concern.


I have a friend in her early sixties who has early onset Alzheimer's. The managers of the in home caregivers are saying she is at stage five. I have heard that people go through the stages differently, however, I would think there would be at least some criteria that shows, yes this is clearly stage 5 or whatever stage they are in. I know I am not a doctor, not even in the medical profession. however after watching a narrated, video a woman made of her mom's "journey through Alzheimer's, and talking about, and showing of abilities, behavior, etc. at each stage, (at stage five, this woman's mom could even communicate what her thoughts or feelings were about her diagnosis). So I have hard time believing my friend could be at stage 5, as she can clearly articulate (although she doesn't always remember all the words) how she feels about her future, the (I feel sometimes extreme) limitations the in-home caregiver management places on her. I know that neither she nor her mother that she lives with, have a doctor directly involved with their care, and as far as I know, neither of them have been to a doctor in at least several months. (Except for my the daughter, my friend having a physical medical issue she went to the emergency room for one night). My concern is that the in home care management (who I am pretty sure have no medical training) are saying she is at stage five in her Alzheimer's so they can say she needs more care=more money.


Any thoughts anyone has on this would be greatly appreciated.


Thank you,


NC

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I don't know many people with early onset Alzheimer's but one of the tragedies of this kind of dementia is that it progresses quickly. The scales are just meant as a general guideline and the amount of care she receives is not dependent on where they rate her unless that is a requirement for insurance or a government program that pays for a caregiver; in that case a higher rating might equal more funding, which would be a good thing. If the family is paying out of pocket then they get whatever they can afford, unfortunately many can't afford nearly enough.
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Are you familiar with show timing? It is not at all uncommon for people in your shoes, aka people who aren’t with the person 24/7, to think that the person is fine because the person “showtimes”. They pull it together in front of others.
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I too wonder how much training this manager has medically. My daughter is an RN in longterm care 20 yrs. And she maybe able to guess where someone is in the ALZ journey but she wouldn't take it upon herself to actually diagnose it. And...what does it matter what stage she is in. They should be billing according to the care she needs not what stage she is in. A CNA, who probably is the caregiver, gets 8 to 10 weeks of training. That training includes how to care for a patient not really any medical training. They can't give shots and they can't disperse meds unless they have medtech training.

I would first want to know what the Managers credentials are. And before I paid more money for friends care, I would take her to a neurologist for an exam and have the former neurologist send her records. I would leave the diagnosis to the doctor. She should be seeing one every six months to a year anyway. I would have her Mom write down any changes she has noticed and give that to the doctor. I would also list the limitations that the caregivers have imposed. If she is 63, then Mom must be in her 80s. This has to be overwhelming for her and she probably thinks the caregivers know what they are doing. What they are doing may make their life easier, but is detrimental to your friend.

Does friend have any money? An AL maybe a better place for her. Would take the responsibility from Mom. She would be with other people, have activities, go on outings. It may not cost more than what she is putting out on caregivers.
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