I am the main caregiver for my uncle who has advanced Parkinson’s disease, associated dementia (Lewy body), and a recent diagnosis of late stage four lymphoma. His sister (my mother) and I opened our home to him and are providing him excellent care. Despite the fact my uncle and I are not close and he has been very hurtful to me in the past, I agreed to help since living alone had become extremely dangerous for him. I do most of his care most days, as I have a small (now suffering, lol) business from home while my mother works out of the home.
My uncle has a home health care team that comes to the house. Several times his care team has communicated with him to do activities or lifestyle changes that require my support or assistance without consulting me.
For example, I have been making almost all of his meals from scratch according to his extensive dietary requests. He loses weight easily and so he eats a lot (probably about 6,000 calories a day). I am cooking constantly. A social worker visited and she suggested we try meals on wheels for him on some days just for a break and a change for him. So we signed up for that. Less than two weeks later (we hadn’t even received any of the meals yet) a nurse visited and told him he should be eating organic and advised strongly against meals on wheels for their low quality ingredients. I understand meals on wheels isn’t the best, but we really needed the break from the time and expense of feeding him so much and now if we go ahead with the meals on wheels my uncle will feel neglected.
Another example is a physical therapist came and was very forceful with him about increasing his activity. She told him he needed to do more exercises despite the fact he is exhausted from multiple appointments this last two weeks. Within a week has had a pet scan at the hospital and will be having an MRI and a biopsy and an appointment with an oncologist and a follow up with his primary in the next 10 days. That’s on top of multiple home visits. She told him he wasn’t exerting himself. He said he doesn’t much like the exercises. So she says well instead of doing them then he can get up and walk around the house multiple times a day but never alone. Always supervised.
So now — in addition to handling all of his arrangements and appointments, cooking all his meals from scratch, shopping for him, cleaning him, helping with toileting, handling all his medicines and entertainment needs, reminding him to do his daily exercises, helping him make phone calls, putting him to bed at night, and getting up with him during the nights when he is unable to go alone to the bathroom, not to mention he can never be left alone because of his dementia (learned the hard way that I cannot shower or take naps unless my mom is also there because someone has to always be paying attention or he does unsafe things) — now I’m also expected to supervise random walking episodes multiple times a day whenever he feels like it. She told him if he doesn’t do this he will get sicker and weaker. So if I say, “Hey, this won’t work for me,” it will look like I’m the one making him weak and sick. Again, he will feel neglected.
My work has cut back drastically to maybe twenty percent of what it was and my uncle does not compensate me for my time and assistance. I have no social life, no privacy, I am exhausted and am drowning in tasks for him already. And every time the team comes, they add to my task list without asking me if I have time or ability or situation to do these extra things (like switching his food to expensive, hard-to-find organic ingredients).
I am upset and feel his team is hypercriticial of what is, again, already excellent care. Before reaching out to his team to discuss this, I wanted to ask here if I am out of line for my feelings? Thank you.
I've validated your feelings, yay! Now let's deal with the straight skinny, the real nitty gritty. Uncle needs to be in a care facility where his enormous needs can be met by a team of skilled trained professionals who know how to do all this and have done it all before. And they do it 24/7.
This man has more than one life-limiting illness. It's beyond me why his team would encourage him to exercise, eat organic (what does this help a dying man?) and whatever. My dad died of lymphoma and had dementia. I know exactly what you're dealing with. Dad tried CHOP chemotherapy, a treatment for lymphoma. It nearly killed him of itself, and he quit it so he could live out his life naturally. He wished he'd never tried it. And trust me, since you are exhausted with what you're already doing, you don't want to be taking care of Unkie through that.
Go with him to his upcoming doctor visits. Contact the doctors beforehand - they probably won't get back to you - but in your note or posting on their patient portals, suggest hospice care. In a facility. No one has to know you are the one bringing it up. In fact, if you don't, one of his doctors almost surely will mention it. Hospice would be the best thing for all of you, and they will have more sensible advice than the present PT and organic foodies.
As for your being the one who is blamed for his being weak and sick, stand up for yourself. He was already beyond what you could do when he arrived. If your family won't support you, so what? They haven't helped you with Unkie, and you don't have to be their best friend. Best of luck, and please let us know how you are doing.
It’s time for placement for your uncle .
He needs a facility with a village of staff . This is too much for one person .
You need your life back and the ability to earn money , to have a social life , privacy etc .
It isn't. Normal, that is.
It isn't clear to me whose home this elder is living in.
Are you living in HIS home?
Is he living in YOUR home?
Are you being paid?
Is there a care contract drawn up by an elder law attorney for all of this care?
What you are doing is by choice. You are a grownup.
You have told no one, not Uncle, not other family members, and not visiting caregivers that you CANNOT and that you WILL NOT continue to do this.
None of us can tell them that FOR you.
Throwing yourself bodily on the burning funeral pyre of an elder will get you no thanks from anyone. Not from family and not from the elder himself.
If you cannot stop yourself in this ongoing martyrdom, I would see professional counseling with a good cognitive therapist. This isn't working and isn't healthy.
Just because they give their opinion doesn't mean that you or anyone else has to listen to them.
And the fact that your uncle already has a death sentence with having dementia and perhaps even his cancer diagnosis, who cares if he's eating "organic" or not? I mean really....get the man signed back up for Meals on Wheels and give yourself a much need break from cooking.
And quit paying attention to what his care team says. With all your uncle has going on if he doesn't want to exercise he shouldn't be forced to. Give the poor man a break. Let him die in peace.
You OBVIOUSLY are beyond burned out with your uncles care and quite honestly I don't think this actually has anything to do with what the care team is saying or not saying, but the fact that your mom and you have bitten off WAY more than you both can chew right now, so it's best now to talk about the next steps in your uncles care and where he needs to be placed.
I bet the his care team can help you with that as well.
Best wishes in finding the right facility to get your uncle placed in.
You've got too much on your plate to begin with, and all these ideas the "team" keep coming up with only work if you have a staff at your disposal! And cooking all these organic meals from scratch every day is ludicrous.....your uncle has stage 4 cancer and w/o aggressive treatment, no diet on earth will save his life I'm afraid. My own oncologist laughed when I suggested such a thing was even possible. Give him McDonald's if that's what he'd like! It's super high in calories and tastes great.
Speak your mind and do only what you can do here. In a perfect world we'd all be Superwomen but then again, in a perfect world, nobody would get cancer, Parkinson's and dementia.
Best of luck to you.
We went through mil’s having nhl stage 4 five years ago, I assure you that chemo for this made her seem almost demented at times herself. Add that to pre-existing dementia, and you definitely need to bow out.
Where is uncle’s social security check going if not for all this Whole Foods bs?
I mean honestly, 6000 calories all from organic whatever prepared by hand? NO.
The needing to be accompanied on walks all day, NO. You’re already busy in the kitchen dealing with his dumb organic food requests.
If precious uncle insists on all this crap, then maybe he should be in a care home where the minimum gets done and no will particularly care about his whiny feelings.
You tell the care "team" that you are unpaid and helping out of the kindness of your heart and if they want him to have all the things they're demanding for him, they can damn well come and do it themselves or arrange for others to make them happen. If that can only be achieved in a LTC facility, so be it. You are not responsible for him, not do you have to be on duty 24/7 doing the work of a full staff in a LTC facility.
You DON'T EVER take orders from these people. Not a one of them. You put them in their place at once. Not a social worker, nurse, physical therapist, NO ONE. You let them know what level of care you are willing and able to provide for your uncle. If they don't find that adequate, they can figure out how to get what he needs.
When I worked private-duty cases I never took an order from a nurse, social worker, or physical therapist. I take suggestions. If a 'suggestion' is unreasonable or I found it ridiculous it was refused. With private caregiving it's often up the the caregiver themselves to bring in other caregivers if 24-hour care is necessary and to make sure the client gets that care. That's the person giving the orders. Not the others. Don't forget it and don't let these people complicate the situation. You don't have to allow them to.
Good luck to you and please stand up for yourselves with these people. They aren't the ones in charge here, you and mother are. You work with them, not for them and if it's not working for you it is their responsibility to see that it does or to make other plans for your uncle's care needs.
And what’s your mother’s role in all this?
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