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ddbslx3 Asked December 2016

My mother's physical and mental health and my ability to care for her has reached a crisis point. What do I do?

Mother has dementia and rapidly declining mental health and physical health. She is frequently agitated and verbally abusive, she doesn't remember these outbursts. She is unsafe by herself and unaware fully, of her own safety. She skips medications and meals and is often paranoid. She is incontinent of urine. Cannot accomplish activities of daily living. Refuses to consider medications for her behavior and dementia issues because she does not recognize them.


I can no longer care for her in the home, I have psoriatic arthritis (in hands and feet). I am waiting for a judicial disability review with a judge. I have at least a year longer to wait for that. I am in College to get an associates degree for medical billing and coding, I can no longer work as a nurse. I am sleep deprived and emotionally and mentally exhausted. This puts mother at risk also, because she is living and depending on someone who can no longer care for her. She refuses and mention of facility care. My siblings want what she wants and will not listen to me regarding what she needs. I need to protect myself and mostly her. I have reached out to her physician, who said for me to choose a facility and she would admit her. Mother and my siblings won't allow that. I insisted on home health care at least and her doctor did order it. I am unable to coordinate it, and have problems with the nurses aide, PT, OT, ST, and social worker (who has yet to call me, even though I asked to speak with her two weeks ago when mother started receiving services) asking mother to schedule her care, and also calling her to schedule care visits, and they were all informed to call me or my sister to schedule visits. Not one of them has called me or my sister once. I need help obviously but soon I feel I may be needing legal help if she continues to be neglected. My siblings don't see this. HELP.  

ddbslx3 Dec 2016
No, right now my job is to get my mother the care she needs. I think most people know that getting a person with dementia to listen to reason is completely useless and only exacerbates agitation and anger, and should not be done. Of course I know that someone other than myself will have to lay out "what is going to happen', but not to her (my mother), but to my siblings that don't want to have to make the difficult decision to have her placed in a facility for care. I don't have any concerns about financial resources for her care. I guess the only thing I can do now is to contact an attorney and find out how to get this accomplished.

BarbBrooklyn Dec 2016
Was putting everyone's name on the deed done with the advice of a lawyer? Does your mother have the resources to pay for in home care, or for a nursing home ( where i live, my mom's modest nh costs 12,000 per month).

If Medicaid is going to enter the picture, you should consult with an eldercare attorney about the retitling of the home.

If your mother has dementia, getting her to listen to " reason" is pretty useless. Combined with her very rigidly organized personality, getting her to " accept" anything other than living at home with you as her personal servant isn't going to happen.

Someone other than you is going to have to lay out " this is what is going to happen" and effect the change. She won't be happy, but you'll get your health back. Right now, your job is to make a plan for YOU.

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Carolgigi Dec 2016
Ask you social worker about your state Medicaid program for long term care. It might provide some in home services for your mom and that could lighten your load and get you some support. What state are you in? Arizona has a fantastic program if you happen to be here.

BarbBrooklyn Dec 2016
Ddb, I'm glad you are making progress!

ddbslx3 Dec 2016
pamstegma Thanks for suggesting section 8, HUD, apartments for disability. I hadn't thought of that, primarily I guess because I am still waiting on the judicial review and have not been granted disability yet. I will ask about this. I will call the social worker from the Home Health Agency on Monday and see if she has made any progress with my siblings and getting mother placed in a LTC facility. If not I plan to have a consultation with an attorney to find out what I need to do for mother and myself. Thanks again

ddbslx3 Dec 2016
Barb Brooklyn, I am here as much as I can. I am ready for any advice and will answer all questions.

ddbslx3 Dec 2016
After reading my post I realized the part about Home Health not calling mother was unclear. The social worker I spoke with today, said she would inform everyone ( PT/OT,ST, nurses aide, and the visiting nurse), not to call mother to coordinate care. So I will see if that happens or not. If I have to change Home Health Agencies I will. This situation is complicated by the fact that my mother has long periods of lucidity and someone talking to her would never guess she has dementia The nurse that visited her today, asked me where her medicine was and said "She is oriented to person, place, and time", and she needs to take this in the morning, not at noon. I told the nurse, that she has dementia and is not always oriented and gave her a few examples of that, and then she understood why I had her medications. I didn't even recognize her behavior as dementia until the admitting nurse from home health said "She has dementia". I immediately said "I don't think she has dementia, and being the skilled professional she is, the nurse just asked me a few questions until I realized it for myself. I was sort of shocked, but it explained so much about mother's behavior. (Mother is 96 years old now, and her children have always called her; mother, at her insistence, because she felt "mom" sounded disrespectful. We were allowed to call her mommy, when we were very little, but by age 6 we were expected to call her mother). She always complained about people saying "How are the kids, what are the kids up to". She said kids are goats, not children. So funny. That may give you a little insight into her personality.

ddbslx3 Dec 2016
There is no medical or financial power of attorney in place. I live with mother in the family home. I have lived her and taken care of the house and yard for 16 years. A year or so ago she had the names of her 6 living children put on the deed of the house along with her name, (there are 4 living children now). I will call 911 for the next fall, thanks, I hadn't thought that through yet. I called the Home Health Care this morning and the owner of the agency was the only one there today. I related all the problems and she had the social worker call me almost immediately after that. She is going to call my sister and brother and attempt to explain the situation to them. Home health will not call my mother's phone or try to coordinate care with her (we'll see if that happens). They had her cell phone number from Nov. 2015, when she had home health services after a facility discharge, for a hip fracture in August 2015. Thank- you all for your responses and info, it helps tremendously. I feel less alone. I agree that if either of my siblings took care of mother, for a day or two they would figure it out pretty fast. Unfortunately my brother lives in California and has already said "I can't come home and take care of her". (I didn't ask or even suggest that, but that is what he thought I was saying when I said); "I cannot help her or take care of her any longer, her needs are more than I can meet. I no longer have the physical, mental, or emotional ability to meet those needs. My sister is married, lives about 15 minutes away in the same town as we do. But cannot and will not oppose mother, even to help her. My brother won't either, but he is the only person my mother will even consider ever listening to. I understand how difficult it is for them, for mother, and I have been unsuccessful in getting them to see the reality of the situation. Hopefully the Social Worker can help accomplish this, but honestly, I have my doubts. Thanks everyone for your help and support.

pamstegma Dec 2016
Get OUT of her house. Get on a waiting list for apartments for the disabled, like section 8 HUD. That is the only way your siblings are going to wake up and smell the coffee.

BarbBrooklyn Dec 2016
DDB, I see that you are reading our responses. Come back when you're ready and talk to us. We're here to help and we care!

BarbBrooklyn Dec 2016
For starts, call the home health care agency and ask what number they have as a contact. Say, " no that's wrong, this is the number" . Give them your number and that of your sister. Don't give them mom's number.

And feel free to find another agency if they're not calling you back.

We have another poster here, Upset, who was living with her mom and being verbally sbused. Brother had PoA. She successfully walked away.

If someone else has poa, just leave. Call up poa sibling and tell them it is their turn now. They will figure out pretty quickly what mom's needs are.

If you have poa, this might be stickier. Come back with some of the legal details so we can give you better advice.

MsMadge Dec 2016
If you are having trouble with the home health agency then you should be free to choose another but as Barb mentions above we hope you have POA

Do you live with mom ?

BarbBrooklyn Dec 2016
Are you living with your mom, or she with you? Giving you good advice requires knowing a bit more about your situation.

One thing to remember; if mom falls, has an injury, even a minor one, or gets so agitated that she is out of control, call 911 and have her sent to the ER for evaluation. You can refuse to pick her up and return her to her previous environment, as it clearly does not provide a high enough level of care.

BarbBrooklyn Dec 2016
Who has financial and medical power of attorney? Let's start there and you'll get great advice.

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