mother refuses health aid in home

GailBD

Mother is refusing the nurse to come in for home health aid and threatens to call the police and yells for nurse to leave. The she complains that I do not come to see her. When I come to care for her, she forgets all that I have done and asks over and over, when am I coming to see her. I asks her to please let the health care in to help me care for her. She wants me and me alone; which I can't do. Today she was on the side walk telling a neighbor she can't get in touch with me. Her house is clean, food and plenty of water. She is clean, her clothes are clean. It's just never enough. She asked me every day when I am coming. My daughter helps. She is exhausting. She forgets and it is never enough.

SusanB-dil

Hi Gail D - welcome to 'here', but sorry for the reason.

So is she living alone? When that nurse comes and she has no idea who this is who is getting into her house, she may be scared. So sorry, but she will not remember that you are doing anything. She will not remember who 'that lady' is attempting to get into her house. "She forgets." That is just it. Depending on what stage, you may have to consider other arrangements, like an Assisted LIving place that can transpose into memory care when needed. If she cannot be with you, that is ok, but she probably isn't able to manage on her own very well.

Also adding - is paperwork in order? and health HIPPA accesses? very important.

Rule #1: Don't argue with a PWD. Rule #1: Take care of yourself. Rule #2: See rule #1, both of them.

harshedbuzz

@GailD

Are you the reason mom is doing as well as she is in terms of personal care, clean clothing and a stocked pantry? If so, it may not be possible for her to remain in her own home if she doesn't accept professional care for others.

My dad was like this. It takes a team to provide dementia care; if mom won't allow that, she'll need to be placed sooner rather than later.

HB

fmb

I agree with the suggestions for placement. I had no idea how much scaffolding I was providing for my DH until the situation became untenable. My mental and physical health were suffering greatly. It was a fight, but getting him into assisted living was a lifesaver for both of us. You MUST put your needs on a par with your mother's. You cannot let this disease claim two victims.

GailBD

Yes, I am the reason for personal care, clean clothing and house, and stocked pantry. She never applied for Social Security or Medicare. The assisted living is too expensive. I worry if the assisted living does not work out that she will have lost her home. She can't live with me and my husband. Too much drama.

I keep researching that assisted living is a bad idea, but I agree with you. That might be the next drastic step.

I feel so sorry for her. I had to hospitalize her for a wound on her foot. She kept taking the bandage off until it got infected. She carried on so much about going home; the doctors had to sedate her. She was there for 5 days and they had her restrained by her waist to the bed until I came to pick her up. Makes me wonder if they would have to physically restrain her or keep her medically sedated if I put her in assisted living.

harshedbuzz

@GailBD

Yikes that's a lot.

Has she ever been professionally diagnosed? There are conditions that are treatable that can mimic dementia. If she does have dementia, it is a progressive condition that only moves in one direction and is terminal. The time will come when she needs 24/7 supervision and assistance with everything from hand feeding to diapering unless she dies of something else first.

Do you have the legal standing to make decisions on her behalf? This would be either a durable POA or guardianship? If not, you need to see an elder law attorney to obtain the documents you need and plan for her future. You should probably apply for Medicare and social security on her behalf: a lawyer can advise.

She's sounds beyond a hospitality model AL and more of a secure MC candidate. She wouldn't be restrained in MC as the building is made to be safe for the residents. That said, if she's agitated, medication can help with that. If one MCF doesn't work out, you find a different one perhaps after a geripsych admission for medication. If she owns a home, it can be sold to fund care. When she runs out of money, she could be converted to a semi-private Medicaid bed depending on your state. The lawyer you consult can lay the particulars out for you.

Good luck.
HB

terei

I have heard it all now. She has never applied for SS or Medicare? There are lawyers out there that specialize in SS benefits that you do not have to pay out of pocket. The first thing to do is somehow get control, sell the house + get her into a facility. Your county surely has senior help services that may help.

SDianeL

So sorry you are going through this with your Mom. It’s not her. It’s the disease. Start by reading the book “The 36 Hour Day” which really helped me after my husband’s diagnosis. She’s not being unreasonable. You can’t reason with her because her reasoner is broken. Her memory is gone. She doesn’t know when you were last there or what you did. She won’t allow strangers in her home and they will always be strangers to her. She should not be left alone. She could wander and be hurt or worse. Speak to an attorney right away about your options. Keep us posted.

H1235

I think the reason she is not accepting health aid is because she is not is the correct environment. I would recommend you call your local commission on aging. Ask a bunch of questions and see what her options are. Get her signed up for SS. Find out if she would qualify for Medicaid. Do you have DPOA? You will need it! It sounds like it’s time to consider other, safer living arrangements. Even if you think she is not to that point yet she will be soon enough. A plan B is a good idea. Some medication may also be helpful. Good luck.

GailBD

Thank you for all of your advice. Appreciate your attention. Planning to go to see Memory Clinic Doc [this Thursday] for MRI; I think and more guidance.

harshedbuzz

@GailBD

Since this is a clinic, ask if they have a social worker in the practice. I found dad's neurologists clueless about legal and care considerations. It's rare you'll find one who dictates lifestyle changes like not living alone or not driving.

HB

GailBD

You are right. They are not helpful. Just in a rush to get us out of the appointment. Said contact them three months from now.

JJ401

Contact them in three months! This clinic is not going to be of help.

You need help now. If there are POAs in place, I might start by calling the lawyer who drew it up. They should be able to point you in the right direction. If there are no POAs, contact an elder care lawyer, and ask for advice. Go by yourself. Do not take mom. Once you have a plan, take Mom and get the paperwork signed.

Be aware that if Mom never signed up for social security and Medicare, it can be complicated. Social Security will be no problem. But, Medicare part B and D impose a financial penalty if you do not meet one of the exceptions for signing up at age 65.

GailBD

Thank you. I think I am going to bite the bullet and have some of Mom's payments go into Medicaire penalty so that I can get more in-home health care. Am 71 myself and near burnout. Have help from son and daughter; but not enough. Mom will burn everybody out. Maybe then Medicaid will accept us.

M1

Gail, welcome to the forum. You need to be forewarned that Medicare won’t cover home health care except in very limited circumstances after a hospitalization or surgery. Medicaid might cover some in order to keep her out of a nursing home. You need legal advice. If call your local Council on Aging and see if they can help.

GailBD

Thank you. I am going to call Office of Aging again. Researching the internet is so confusing. I am reading Medicare will cover 35 hours per week home health care. I thought it meant per week???

​fesk

Let us know what you find out. I called Medicare this past year and was told only home health if skilled nursing was needed (like wound care, etc.).

pamnc123

> @GailBD said:
> Mother is refusing the nurse to come in for home health aid and threatens to call the police and yells for nurse to leave. The she complains that I do not come to see her. When I come to care for her, she forgets all that I have done and asks over and over, when am I coming to see her. I asks her to please let the health care in to help me care for her. She wants me and me alone; which I can't do. Today she was on the side walk telling a neighbor she can't get in touch with me. Her house is clean, food and plenty of water. She is clean, her clothes are clean. It's just never enough. She asked me every day when I am coming. My daughter helps. She is exhausting. She forgets and it is never enough.

oh my hearts breaks for you. I'm going through the same exact thing - my mother won't accept help either and wants me and me alone. I live 35 minutes away and I still work and that commute is 45 minutes in the opposite direction of mom. so I drive constantly, I can't take care of my own home and farm. I have to order doordash every day for her and it's so expensive and she lives off SS. I finally got her set up on meals on wheels and she "hates the food." Same as you - she forgets and it is NEVER ENOUGH. I'm an only child and what relatives we do have nearby barely help. I feel as though I don't even have a life and I'm major depressed. She is so negative when we talk or when I visit and it brings me down so much... I'm on the verge of a breakdown. What you said hit home with me 1000%. Oh - I asked about a home health aid and she said she wouldn't let them in the door. It's a no-win situation.