Mother is 83 years old. Paralyzed from waist down due to bad surgery four years ago. Has catheter, wears diapers for bowel. Obese. Parkinson’s. Last year she developed a bedsore that went septic. Healing but not healed.
Family dynamics are poor. One brother insists on keeping her home and will
not allow any discussion about her care. He does have POA but mom is mentally there.
We are willing to help but he refuses to have anything but a slide board to move her. No Hoyer lift. He says we don’t need one. He gets her up in the morning, she sits in the wheelchair all day until early evening. Most days she sits home alone.
We have tried to care for her to give him a break, but have ended up with major back issues twice. We have refused to help since then without proper equipment.
Brother refuses to have any discussion about this. Mom is so terrified to go into a nursing home, she won’t acknowledge that caring for her could be harmful to us.
The doctor who performed the surgery was sued by her and brother. They have money to hire someone to care for her, in home, yet they refuse to use it for that.
Relationship was not good with this brother before Mom was injured. Relationship with her was great, but he has told her that we don’t care because we “won’t help”. It is not that we won’t help, it is that we physically can’t do what they want us to.
We asked for a family counselor to come in and help us sort through things, and they have refused.
I noticed that she had a tremor in her hand and it was hard for her to eat. Brother said it was nothing and wouldn’t discuss it. When she was at my house I asked if I could take her to a neurologist. She agreed. She was diagnosed with Parkinson’s. When brother found out that I had taken her, he told me to go to hell.
I have begged them to call Pallative care, She seemed to be open to it but brother was angry that I had suggested it so she refused.
Any advice at all?
We used a fall and a trip to rehab and an unsafe discharge plea as our way to get him into a nursing home. That was our only option. We couldn't continue as we were.
My advice - sometimes it just takes someone saying- I'm done. But you have to stick to it and let the chips fall where they may. I had already told my husband I was done. It was his father and I couldn't continue to maintain the pace we were expected to manage to, work a full time job, manage a home, manage any time for my own mother and grandmother when they needed me, our adult children and carve out any time him and for myself. It just wasn't possible because his father was literally eating up every moment of our free time and many moments of time that were already allocated to other things. (there were days I had to cancel work meetings for "family emergencies" for example)
But when you decide to do this - you have to really be ready to say - you are on your own if you insist on not considering other care. And let him handle it. I suspect he will cave in soon and need help and be open to other things.
Often, when someone digs in that hard - they are trying to preserve inheritance or a family home or something along those lines. If she won't do anything with out his buy in and he won't budge, leave them to their devices as difficult as it may be.
And is your mother “mentally there” if she willingly “sits home alone” most days, is so crippled by her anxiety that she will not consider reasonable care alternatives, and places her trust in someone who refuses to spend HER money on HER care?
Have you and your sister seen/read the POA document? No matter what the specifics are, the written document imparts a FIDUCIARY RESPONSIBILITY, and based solely on the lifestyle that you’ve described, her needs are not being met to her best interests.
Bedsores rarely if ever heal in the circumstances you describe, and as you already know, ma
Was the POA document drafted by a lawyer? Do you have access to that person? If you have access to the lawyer I think I’d be in touch with h/h, describe the circumstances as they are, and ask what advice would be available to you from a legal perspective.
If you are on your mother’s side in these “disagreements” with her POA, you may, hopefully, have the right to be heard.
"The doctor who performed the surgery was sued by her and brother. They have money to hire someone to care for her, in home, yet they refuse to use it for that."
Just sayin'...
None of you can safely handle your mother's care needs in the home. Unless ALL of you (including your brother) are willing to get some training and the proper equipment necessary for safe and successful caregiving in the home. All of you also need outside help. Visiting nursing, visiting CNA, and a physical therapist coming in to at least do an assessment.
I'll tell you one thing right now. I don't know how "obese" your mother is, but the weight capacity for a regular Hoyer used in the home is about 250 pounds. I always refused to operate a Hoyer unless there was a second person to assist. These things can be dangerous.
Also, if your mother is still mentally in her right mind, it is not up to your brother to decide what doctors she's allowed to see and which ones she's not.
If APS or the police need to be called to get him to settle down a bit, do it. Your mother should not have to humor your brother who based on what you've told us here sounds like the classic know-it-all Alpha-male d-bag if you will pardon my French. Nobody has time for that least of all your mother.
Talk to the palliative care people and see if they can direct you on how to get a social work case made for your mother. That's a good start. Most of the time they're useless and don't actually get anything done, but they will give you information that can put you in touch with all kinds of resources that you may not know about now.
Tell your mother plainly, that if she going to allow your brother's temper tantrums and ignorance to decide what her care will be, surely she will be in the nursing home very soon, or worse in the coffin.
Show her this post too because I have seen this parent/sibling dynamic play out many, many times. It never ends well when a parent backs down on what they need because one adult child thinks they know best.
Your explanations have not been accepted.
So it is time to be honest first with yourselves that you cannot continue to do this, then with your brother and your mother.
This seems simple to me.
What am I missing here that you are so afraid of your brother that you would risk our own health and well being and that of your husband?
I hope not to hear words like "guilt" because unless you took a sledgehammer to mom's spine, your aren't responsible for this, and you cannot fix it.
Your brother is POA. Let him know you are happy to help him by shopping once a week for them, by making a casserole, by WHATEVER means you can safely do, but that you will not be risking your health in any way.
Let him do it all. You should not be risking ur health when there are other alternatives.
He's seriously abusing his POA, imo. Speak to mom about that, if she's cognitively sound, and get her feelings on the situation. Sonny has likely filled her head with horror stories about nursing homes causing her to be "terrified" of them. And convinced her she doesn't need outside help in the home, too, that you and sister should break your backs doing it bc hes too cheap to buy equipment with HER funds. It's like Stockholm Syndrome....he's her captor whose brainwashed her into believing his b.s. and now she has a psychological bond with him. Elder abuse at it's WORST.
If mom is of sound mind, as you say, perhaps you can get through to her that she needs to hire in home help and purchase the proper supplies, like a Hoyer lift IF she's not too heavy for it.
If not, you'll just have to visit mom and spend time with her at brothers bc she's accepted those living conditions. If you call APS, mom will likely say she's fine and sonny is taking good care of her. SHE has to WANT change in order to make a change.
Good luck to you