In-Home Caretakers Terrible, MCU Much Better

@primarycaretaker2024 Welcome to Mayo Clinic Connect! You’ve come to a good place for support and encouragement. Please don’t beat yourself up over your decision to keep your mom at home with caretakers. You did the best that you could with what you knew at the time. I’m just sorry that you had to go through this experience. Your mom is in a safe place now.
What were some of the warning signs that you missed?

I think it's like everything else..you get what you pay for...in general. I have seen situations like my friend's grandma who my friend had in-home caretakers, daily, and there were no complaints, but the service was legit, established, and therefore regulated. If you pay under the table, there's no regulations at all, so likely you will get taken advantage of or the resident, abused, neglected etc.

My sister did not listen to the psychiatrist who advised us that our mother's dementia etc. would destroy a home life, my sister moved my mother outa assisted care, and tried to care for my mother, who was not taking daily meds anymore, was sitting in the same spot too long with no stimulation, screaming a lot, trying to escape etc.

Finally my mother is in a private memory care center near me..it is private, expensive, we pay a over $10K a month, and of course the service is great, they got my mother back on meds, she's clean all the time, entertained by all the activities and people..etc.

However my friend Sam, is in a facility, 100 percent medicare/medicaid, he pays nothing, so like most gov funded places, it's ill staffed, negative demeanor is seen on faces of unhappy looking staff, their pay is low, there's too many residents for one staff, Sam is often dirty, not showered enough etc..''

So count your blessings...as long as your mother is doing well you are lucky. My mother's money is running out soon, and she will have to go into a 100 percent medicare/medicaid facility and it will be a severe drop in care overall..hopefully she will be completely "in her happy place" and won't notice outside beings anymore...as one Director told me...

When we get “there”, I don’t think I can send my husband away from home and off to a facility. I am hoping that since I will be living with him we will be able to find caregivers to come to our home. I honestly don’t know how I could live with just visiting him at a care facility

I just found out about “ Go Go Grandparents”. Check them out they have different services available including rides and home care. I think they charge $248 a year and also a monthly charge but well worth it.

I was just thinking about you the other day and how you are doing?
I am starting to see subtle changes
but still trying to hang in there.
I may go to counseling? It’s not helping that he fractured his back so he is wearing a brace now. Have a great day and take a breath every now and again. 😍

That's an understandable feeling. And pardon me for saying so, but it may be wrong. I also had no idea how I would do that "final drive" of taking my mother to the memory care unit. But I finally did it, AFTER spending many thousands of dollars on home care, which in retrospect was not a good value because:
- all I did was postpone the inevitable
- the at-home care was not very good
- her present memory care unit is quite good
- that money could have been used for other things like grandchildren's college tuition.

The whole under-the-table in-home caretaker thing left me feeling very taken advantage of. It essentially left me responsible for supervising a rotating staff of 4-6 in-home caretakers, despite there being a woman who claimed she would be the "manager". I was totally unprepared for this. I have never had employees, and I have never fired someone. I was not prepared to manage the bank account. It was all dumped on me. I had little or no help.

I won’t hire off-the-books people. It’s a matter of ethics. There is an in-demand caregiver in my area that I interviewed but she didn’t want the paperwork involved with the VA VDC program because she is collecting unemployment, food stamps, and other benefits. That is MY tax dollars she’s benefiting from. I was very close to reporting her. My husband has a saying “If a person will lie to you, they will steal from you.”

There’s substantial liability if a worker is injured at your home. Like many parts of the country, I’m in an area where there is generational poverty. The “golden parachute” is having disability income. This steals from both the taxpayer & those who truly need disability benefits. Rant over LOL.

Hi @coping123. You made some excellent points.
My husband is still at home with Alzheimer's Disease, and at this time, it's not difficult for me to take care of him.
We recently met with a geriatrician. She told me that, when the time comes it would not be safe to hire caregivers privately to care for my husband for personal liability reasons. She said to only hire from an agency that has insurance and whose employees are bonded. She also recommended putting credit freezes in place, which we already have.
In our state, the cost of memory care in a facility is $16,000 a month and $24,000 a month for in home care.
It was good to have all this laid out for future planning.

Regarding moral objections: My mother fell down the stairs, and spent 6 weeks in the hospital with 6 broken ribs. I was busy trying to get her back home from the hospital and not be moved to rehab. At the time, my moral objections to off-the-books caretakers was not my primary concern.

Today, I would never recommend off-the-books caretakers to anyone. But I was thrown into this situation with little to no support. If I knew then what I know now ...

Regarding the geriatrician: What geriatrician? I took her to her primary care provider. She had a brain scan. We saw a neurologist. She got the diagnosis of dementia. Never any mention of a geriatrician.

Hi @tsc, Is your husband a Veteran? We have a caregiver 7 hrs a day, 5 days a week paid for under the Veteran Directed Care Program. The intent is to keep the Veteran in their home. We found a wonderful caregiver who has become family to us. I realize how blessed we are to have found her. The nearest care facility is about 2 hrs from us. The nearest excellent memory care facility is almost 3 hrs away & has a waiting list. (I think all the facilities within about a 3 hr radius have waiting lists. It’s not unusual.) We had 2 small facilities in town. Both closed this last year because of staffing issues.