He has severe dementia, Alzheimers, and Parkinsons. I am secondary Med POA. My Dad has more than sufficient resources to pay for his care, but they are controlled by my stepmother. She has decided she does not want to pay for the sitters any longer, though there is money enough to pay for them for at least 5 years at the current rate.

I got Dad on Hospice, but Hospice dropped him when I sent my stepmom legal notice to keep the sitters. Hospice Dr didn't want to be involved but his team agreed Dad needed the sitters. Hospice has taken their wheelchair away and the hospice meds they had Dad on.

The sitters provide Dad the ability to walk, stand up and sit down without falling, go to the bathroom instead of just using the diaper, keep him clean, choose what he wants to eat instead of just being served food. He can't answer the phone by himself and has no understanding of what the nurse call button is for much less how to use it.

My stepmother never goes to see my Dad and has denied me access to even his medical records to help him. I see him at least 5 times a week EVERY week and call him every 3 or 4 hours. Stepmom doesn't call him on the phone, and rarely goes to visit. She has given her daughter fiduciary POA over them both my Dad and stepmom because step-mom can no longer do it herself. The sitters have been cancelled as of midnight tonight. They will have to leave in the middle of the night when he is most confused and asleep. (If I could pay out of pocket I would.)

Does anyone see problems here? I am having a hard time getting anyone to listen. I have called lawyers, Adult Protective Services, DADS, the nursing home corporate offices. I have filed report after report but nothing is done because Dad is "deemed safe since he is in a nursing home." However, the nursing home is severely short-staffed and they themselves were the ones who insisted we hire the 24/7 sitters.

I need help badly. If I could pay out of pocket I would.

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habhtx, kudos to you for visiting your dad at least 5 times a week, which I'm sure is good for him and it also lets the nursing home staff know that someone still cares about him, which is a good motivator for them to do the best they can.

If you haven't already checked Medicare's rating of your dad's nursing home, I suggest you do that at and that you also check your state's Dept. of Health and Welfare's inspection reports for his nursing home. Getting this information should help you determine if his nursing home is truly "understaffed" compared to others or if it's only your perception because you think he needs better care than any nursing home can provide. It does look problematic if the nursing home "insisted" on your dad having 24/7 sitters -- what has the nursing home done since the sitters left?

There's much in your description that I don't understand, e.g. if you are your dad's "secondary" health care POA agent, what authority did you use to get a doctor to prescribe hospice for your dad and to send your stepmother "legal notice" to keep the sitters?

You said your dad has enough money to pay for 24/7 sitters for 5 years. That equates to about $1m, do your dad and stepmother have enough income and resources to pay that much while also paying all their other combined living expenses? And, if so, what do you envision would happen after 5 years?

I think your dad is lucky to have you visiting him so often and advocating for his care. This is a hard time for all of you. Best wishes.
Helpful Answer (2)

What kind of legal notice did you send to SM to require her to keep the sitters? Apparently she not complied. Are there any consequences?

Why did hospice quit? Because you ordered it and you do not have medical power of attorney? Or some other reason?
Helpful Answer (3)

Why did the NH insist on private one-on-one care? What is their attitude about dropping that care? Has dad settled in well enough to no longer need this?

Would stepMom compromise with having one shift of sitters per day? Or even a four-hour shift at his worst time of day? For example, does he have sundowning behavior for a certain period most days?

You would pay out of pocket if you could. Apparently his wife has decided they can no longer pay out of pocket. The nursing home itself is costing a big chunk each month!

How old are Dad and his wife? How long have they been married? How long has Dad been in the NH?
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habhtx, I am sorry, but I am so confused regarding your Dad. Is your Dad living at the nursing home or is he still living at home? You said your Step-Mom won't visit him so does that mean he is in the nursing home? Then you said the sitters won't be there at night when Dad is confused and asleep? If he is at the nursing home, he won't be on his own.

Do you know how much your Step-Mom was paying for "sitters" for your Dad? When my own Dad had professional caregivers it was costing him $20k per month, thus that would be $240k per year, and over a million after 5 years. Dad decided himself to move to Assisted Living which was less expensive for him.

Also, since your Dad and Step-Mom are married, everything is usually joint funded. Dad can't use up all the funds because your Step-Mom needs to have something to live on for herself.

Alzheimer's-Dementia is extremely exhausting, mentally and physically. Even with sitters, your Step-Mom had to take care of your Dad long before the sitters were hired. She probably has crashed and burned. Were you able to give her break back then with caring for your Dad?

Since the sitters were cancelled as of this evening, are you saying your Dad just went into the Nursing Home? If yes, then that is the reason your Step-Mom has been staying away as the Staff asks the family to have no contact with the patient for at least two weeks. Reason for this is so that the patient can get use to his surroundings and start to depend on the Staff.

You mentioned that Dad was able to use the bathroom. Since Dad doesn't understand how to use the nurse call button, how would he be able to signal to someone he needs to use the bathroom? Depend type garments is the norm. And with Alzheimer's/Dementia he could have forgotten how to use the bathroom, on how to eat, on how to dress, etc.

Learn all your can about Alzehimer's Dementia. Scroll down to the bottom of this page to the blue section.... click on ALZHEIMER'S CARE.... lot of excellent articles.
Helpful Answer (3)
jeannegibbs Apr 2018
About using the bathroom, FF: My mother did not remember to use the call button. She had disposable undies on at all times. She was a two-person transfer with equipment. But she still was taken to use the toilet. The aides were in and out of the room frequently. She was out of the room at activities often. She simply told whoever was handy that she needed the bathroom and they passed it on to the correct aide.

It is a matter of dignity for most adults to use a toilet or bedside commode or even a bedpan. Telling someone to "just go in your pants" is very problematic. No one wants to be infantized that much. It is bad enough they have to eat stuff that looks like baby food.

It would be great to have one-on-one help to see to this, but most people in an NH do not have such help and yet manage to get taken to the bathroom when they need it.
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