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.
What do you want to change?
The phrase 'Lead, Follow or Get (Outta the Way)' comes to mind.
Lead this your way, follow the Care Team's plan or decide to step back & out.
When they ask why he is not following thru with their suggestions tell them if they want him to do certain things, they have to provide the people to help him. You cannot be doing for him 24/7, you have a life. Your not a CNA and you don't get paid to help him with the things they are asking of him. Tell them you have enough on your plate, then tell them what you do, without helping him exercise, etc. They also contradict each other. Maybe they should get together and go over their careplans. And when they do, realize that a person who works fulltime has only so many hours in the day and deserves some of that to themselves.
When my Mom came to my home after a hospital stay she was released on a Thurs. I was not home long before "in home care" called. They wanted a Nurse to come that day and admit Mom for PT for Friday. I said No, I just got home. I have no idea how my Mom was going to adjust staying here. I needed time for us both to adjust. I did allow the Nurse to come Friday and Admit Mom. Monday was 1st day of PT. 8 am in the morning, I said no. 8 am was too early for me to get her up and dressed and breakfasted. So, they agreed to 10am. Which worked. These people are coming into your home. They adjust to you, not you to them. They can make all the suggestions they want. If they want him to eat organically, they supply the cook. They want him to exercise more, they supply the person to help him. If he was living alone, how would they handle it?
You do what you are doing. When they suggest something tell them you don't have the time to help him with that. No, sorry, you can't cook organically for him. No sorry, you can't help him exercise. He lives with you because its safer for him than living alone. You tell them what your willing to do and not do. They don't tell you. Thats how I look at things like this. Maybe, if you don't help they will supply an aide.
Where is Mom in helping with Uncle?
i am I’m looking for help with my 91 dementia mom. I do most but my husband helps, but I’m the main caregiver. We need help but I’m afraid of the cost plus these people can make life more difficult by bringing in suggestions or social works. I don’t know if I can handle that. I take great care of mom but if a stranger comes in judging me, I don’t have the patience for that. I hope things work out for you. You need a life!
Your daily situation sounds frustrating, working with what seems like "too many cooks in the kitchen" and all of them using different spices that don't necessarily go well together.
My advice is to communicate to them, but that's easier said than done.
Perhaps set a daily schedule for your uncle that works for you, not the care team. You can listen to their suggestions, but ultimately do what works for you, as his main caregiver. Do what works for you!
Regarding meals, there are frozen Skillet Meals at the grocery that can be heated up on the cooktop and may come in handy every now and then for a quick and healthy option and to give you a break.
Even reaching out to neighbors, asking for them to make prepared meals like lasagna that you can freeze for your uncle.
Reach out and ask for help--there is someone out there, in your neighborhood, in various parts of your life, or your uncle's life, that may be willing to help, but they aren't aware that help is needed. Some kind folks know how to spring in to action when they are needed.
Giving you a big hug and hoping this improves for you.
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?
We had a speech specialist come in from Amedisys. She ordered a lot of extra services without my knowledge. I had to call Mom's primary care physician to cancel virtually all of them. We did not need nor want them. I think the speech specialist was getting some kind of pay/commission/bonus/kickback to order in as many services from Amedisys as possible.
I'd ask your uncles PCP about all of these services. I suspect one of these health care agencies is trying to bill the maximum amount for services. I think you will find if you talk to the PCP that you can cancel some individual services. The agencies will want to bill the government for as much as they can. It really is a scam.
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.
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 .
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 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.
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.