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 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.
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'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 .
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.
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.
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?
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.
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!
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?
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.
And what’s your mother’s role in all this?
- Shopping for supplies
- Shopping for food
- Meal prep
- Meal service
- Cleaning
- Bathing patients (dressing and toileting)
- Administering Medication
- Physical therapy
- Entertainment and mental engagement
- Paying bills
- Visiting Doctors on site
- Nursing staff
- Laundry
- Building maintenance
- Transportation
That's only 15 jobs that I can think of. It takes a group of professionals to do what you're doing. None of the people do anything but their one job. You're doing it all. It's unsustainable.
You say ok, to these care bullies. And, When can we expect the help cause you are not trained or qualified to manage.
Maybe your GP can vouch for your inability to provide the care without injury to your health and well being.
Was your uncle a veteran? My friend's husband got a lot of assistance from the military but he developed Parkinson's disease from exposure to Agent Orange.
I'm so, so very sorry for your nightmare. You're extraordinary.
As others have mentioned, no one can provide 24 hour care alone. Following through with therapy recommendations and an expectation of organic cooking(good grief) are not the big issues here as I see it. Based on what you’ve told us, the situation is untenable and the social worker should be able to help you navigate a solution, be it adding private caregivers at home or finding placement.
I would be very surprised if the home health team is judging you as harshly as it feels or that anyone would ever see you as making your uncle weak or sick. It’s time to consider your own health and well-being.
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.
I had to take my Mom to ER for a broken shoulder. She was asked all kinds of questions by the desk clerk. She told them she was sure she broke her shoulder. We get placed in a bay. No one but one other person is in there but us. An RN walks by and throws a gown on the bed. Then says, put that on her. I told the nurse I thought that was her job. No way was I going to hurt my Mom trying to take off her top and putting a gown on. She had a broken shoulder. The nurse put on the gown.
These people need to justify their jobs. But you in no way have to follow thru on what they suggest. Tell them, sorry, I don't have the time.
lets get back to basics
you’re in charge not them
you tell them what you want not the other cheeky way around
anyone who you feel not listening to you request a change of person
yes- in an ideal world we would all eat organic -we would all do xx hours exercise !
but we aren’t living in an ideal world
I would make an appointment to speak to the care team head and physio and tell them their staff are over zealots and stressing you out
share with them a workable plan
and tell them that’s the plan you’d like staff to work to
—
we have. CAre people come in for my dad - I’m always in the room with them- one was telling my dad off recently !
I told him to stop - just stop!
he stopped for two minutes them told me off for not passing him something ..
he actually got me shout at him
I reported him to the head and advised I didn’t want him here again.. and that’s the end if him
the head mentioned a few others had reported him also and he had been suspended for two weeks . I have made it clear he’s not to come to my house again
—
as for physio- ours-
they actually tell us not to do too much
so I’d say your ones a bit over zealous
maybe start with them
your plan is not workable so I’d like you to revert to the original plan/exercise of xxx
its also stressing relative out so you’d like things relaxed
as for food
thank you for your suggestions
what I can manage is ….
so I’d like you to work with that please
( they may have good intentions and yes packet food full of sugars and sodium/salt causing more issues but balanced is ok
some days you aren’t available to cook and they need to realise that
They prob have great intentions to make him worlds healthiest but it’s not practical and they need to work around you
best wishes
my husband is in the same situation and I am the only caregiver for him. I had a break down from all the stuff I had to do and ended up seeking psychological help it was so bad. Being a caregiver takes the life out of you. I’m not ready yet but I’m already considering assisted living for him even though financially will be a burden. Depending on where you live, contact your county and ask for senior waiver. This will help you financially though not full financial aid but somehow will help.
NO organic foods unless you typically buy them already. He needs to eat the same types of foods you eat. Others meal planning, shopping, and cooking gets out of hand and stressful. He needs healthy calories, and giving him that is more than adequate care!
Physical therapists are used to giving a “best care scenario” list of suggestions…even if they say they are necessary, you just help him do what is easy for you…nothing more. Have his home health aides do exercises with him every single time they come - that’s what they’re there for, once the necessary health/hygiene/meds are taken care of first. But as for you, don’t worry about added things you can’t do. His decline will get to the point where he can’t do any exercise. Yes, keeping him moving will delay this physical decline but don’t prioritize his exercise advice your need to work and care for yourself. His sister should help, as well as his aides.
When his care exceeds the abilities of you and his sister, then it’s time to place him in a care facility. It was a huge relief once we placed my Mom…you get your life j
Have our responses helped?
All these doctors, nurses and therapists are giving you not just information, but direct instructions, without talking to you about what you can manage. You and your Mom need to take control of the situation.
These folks are in the mindset of prolonging life for as long as possible, and pushing him to be as strong as he can be. That is what they do, so that is their mindset. If that is the focus all of you, including you Uncle, want, then let them know what you are capable of managing for him, and what you are not. Be completely honest. Your Uncle may need a facility placement, so you and your Mom don't get burnt out.
But what does your Uncle want? How does he want to spend his time on Earth now, with these diagnoses? This is where the tough conversation comes into play. With Parkinson's, if you don't move around, you can't move around after a while. But if he hurts every time he moves, he may not want to push himself to move much. If lymphoma treatment means going thru operations, chemotherapy or radiation, does he even want that? If he has dementia, does he understand what they are wanting to put him thru? What are the odds he can be cancer free even with aggressive treatment? Is he even a good candidate?
Has your Uncle expressed advanced directives?
It would be good to contact Hospice. Hospice provides comfort care for individuals who do not want aggressive treatment. They look at maximizing the quality of life the person has left, without aggressive treatment. It's quality over quantity.
I am not trying to be harsh. My husband has Parkinson's and some dementia. After a fall, he was not ambulatory. Even after months of PT, he couldn't stand and walk again. He HATED therapy. He was glad when it ended. It was very painful for him. He's been on Hospice for a year. He receives muscle relaxers and pain medication for when we have to turn him and do diaper changes. Would he like to be walking? Yes. Could he tolerate the extreme pain to continue PT? Absolutely not. It was his decision. Can I blame him for stopping? Absolutely not. Parkinson's Disease will progress.
Your family and Uncle have a lot of discussions coming up, with each other, the care team and hopefully Hospice. I wish you well.
And don't feel that you are neglecting your Uncle by not buying expensive organic foods and not being Superwoman with limitless energy. You are human, trying to do the work of caregiver, cook, medical coordinator and physical therapist. It's not realistic that you can sustain this.
One thing though with your uncle, if you all decide that the care goal at this time is primarily to just keep him comfortable, especially at least through the cancer treatment, then maybe you can communicate to the home health team that. Then maybe they will back off some.
Personally, I'd probably be so fed up I'd cancel the whole home health thing. But, like others have mentioned, just consider the things they say as suggestions, and either just ignore them or let them know your not going to do that. And I would definitely speak to them about making sure to discuss with you before doing or "suggesting" anything.
Your uncle needs help in a facility because he is beyond the help that you and your mother can provide.
Trust and believe this will burn you both out.
Caregiving someone who is beyond home care will become a challenging situation. You cannot work twenty-four seven and be expected to get anything done for yourself. Not being able to shower unless your mother is nearby, is not okay.
No, you do not have to prepare organic meals for your uncle. Is there a reason he cannot have a regular diet?
If he needs all of these calories, he needs to be in a skilled nursing facility or hospice care at this point where they can monitor him.
Decide how much time you can realistically give to both your work and caring for your mom and uncle. Not everyone is financially independent, so honor your own limits. Bless your heart for all that you’re doing and be sure to share with your care team that you are doing your best.
In my experience, some families qualify for government-subsidized home care or may have some funds available to pay a caregiver for a few hours a day. Even a small break can make a big difference for your mental and physical health.
It may also help to speak with his doctor to find out what stage of Parkinson’s he is in. The Hoehn and Yahr scale is commonly used to measure Parkinson’s progression and can give you a clearer picture of what to expect moving forward.
I am curious if there has been a Care Plan Meeting with all the "know it all's" (my words)
Do they actually consult with each other, read each others notes in the EMR? (Electronic Medical Record) They should ALL have access to the notes each has written.
You need to tell them enough is enough. I can not do more than what I am currently doing, and what I am doing now is more than I can manage. If this continues I am going to have to step back.
I think you should step back. The fact that he has been hurtful to you makes it more important that you take a step back. And if he continues to be hurtful discontinue the help that you are currently giving him. I realize this places your mom in a position where she is Primary caregiver and it might be more than she can manage. So at that point the option again is...
Hiring caregivers.
Your Uncle can hire caregivers.
or
Placing him in a facility that can meet his care needs.