Home care team is adding what feels like unnecessary burden to me as caregiver.

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.