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My sisters don’t understand that I am limited in the amount of time and effort I must be a caregiver. I have lupus, fibromyalgia, and rheumatoid arthritis. An actual request from them. My sisters expected me to drive 1.5 hours to pick up my mom to drive her to an appointment that is 40 mins from my home. I would have had to drive 1.5 to parents, then 1 hour to and 1 hour from appt, and then 1.5 hours home. There is no extra bed for me at their house anymore. I feel like staying at my parents’ house creates more work for them, they lose privacy, feel like they are entertaining. They all live within 20 minutes of each other. I don’t clean my own house, how am I supposed to clean my parents'. My family have no idea how exhausted I am because they only see me for holidays when I feel ok. Anything I can do about dealing with their resentment?

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Move to Florida................place yourself in Assisted Living and start enjoying other people and outdoor activities.
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BurntCaregiver Sep 21, 2022
Best advice on the thread. Right here from ConnieCaretaker.
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All you should be saying at this point to your sisters and mom is NO.

No I can't drive to take mom to her appointment. No I can't clean moms house. No to whatever they ask.

Time to choose yourself. You deserve to be taken care if just as much as mom does. But you don't have to sacrifice and martyr yourself to care for mom to make your sisters happy.

If mom and your sisters aren't concerned about you and your health then that shows you the nature of their own characters.

Mom had her time and shot at life. Her time is running down. Mom should be looking out for the well being of her daughter instead of selfishly clinging to her life which is winding down.

Take care of you.
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bundleofjoy Sep 21, 2022
LOVE your answer.
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Why do your parents not have homemaker/companion service a few hours a week? The do housekeeping, errands, cooking, driving to appointments and social gatherings, etc...
This is not as expensive as an in-home CNA. Homemaker/companions do not help with things like bathing, incontinence care, medications. They don't do hands-on.
Medicare will pay for homemaker/companion services if their doctor says they need it.
The doctor's appointments get scheduled during their homemaker/companion's shift. Doctor's offices understand this and will accommodate your parent's time needs.
I'm curious about one thing though. Why do you claim to feel okay during holidays?
You can imagine what a statement like that would make people thinks. Especially your siblings.
If I was one of your siblings and you said this to me as the reason for why you can't help with the parents' caregiving, I would tell you to suck it up and pretend it's Christmas because you'll feel better.
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Becky04469 Sep 21, 2022
Best answer “suck it up and pretend it’s Christmas”. Wish I had had it when my SIL made excuses for only showing up on holidays.
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The question should be how much caregiving you are able to provide . You have multiple physical health complications which possibly affects your mental health. Rather than being concern with what are your caregiver responsibilities you should be concern with taking care of yourself and setting boundaries with your sister.
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Be clear.

Say no when you mean no.

Say I can help with A.
But I can't help with X, Y, Z.

On repeat. Change what you can/can't do as your health dictates.

"But they are bitchy to me.."

So what? Really: SO WHAT!

You can't control them, their time, their words, attitudes, thoughts or feelings.

Don't let them control yours.
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And they live 20 minutes away? Are they insane? Do they know of your autoimmune disorders? If not, fill them in right away, then tell them NO.

Unless someone has autoimmune diseases, they have no idea how debilitating they can be, especially Chronic Fatigue Syndrome. There are days you’re doing good just to get out of bed and get dressed. If you did what they are asking, it would take a solid week to recover. It is so not worth it.

Hopefully, they just didn’t have their brains engaged when they asked. If they live 20 minutes from your Mom’s house and can’t take her, maybe a friend can.
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It is ok for you to simply say NO!
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Truman46 Sep 16, 2022
But they are bitchy to me and passive aggressive. Mom was taken to ER, my sister never told me. Another sister let me know 6 hours later. My mom is going on hospice, either I drive 1.5 hours each way to care for her or stay in a hotel nearby. None of my sisters offered my a room and I feel guilty staying at my parents home. There isn’t a bed and I feel like a guest at parents.
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Truman, if your family “have no idea how exhausted I am because they only see me for holidays when I feel ok”, then it’s not surprising that they think you aren’t pulling your weight. Suggestions:

1) Find a way to make your own health problems and limitations more understandable to your family.
2) Have a meeting where you say clearly that you can’t manage their expectations and why. The move on to discussing different plans as follows.
3) Do they want to be paid for the extra work that they do? How can you all organise it?
4) Does mother (and you all) need to find in home carers to take some of the load? Or
5) Is mother’s care becoming too much for you all, and should you investigate appropriate facilities. If mother’s cancer is progressing quickly, that might include a hospice facility.
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Truman46 Sep 16, 2022
1. They have made no effort to learn about what my condition is and what my life is like.
2. Communication obviously isn 't a strong point. I agree that a meeting would be great, but they wouldn't respond to my suggestion.
3. No one is being paid for the the extra work. The extra work is really dr appointments, cleaning, laundry, and projects that mom feels is necessary. (She decided to get rid of all of her old magazines.)
4. She is able to do all of her personal care, gardening, playing cards, etc. Mom and my sister interviewed a hospice service. They will be starting soon.
5. That is part of the hospice process but she wants to die at home.
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Truman, perhaps you need to be a bit more assertive yourself. You are only 50, and no wonder it’s hard for others to understand why you are so unwell. Look at your comments:

“Sister #2 said she was at the house cleaning for 2.5 hours. I wanted to reply that I will have spent 3 hours in the car driving to and from my parents”. Why didn’t you say just that?

“I shouldn't have to prove to my sisters that I am ill”. Why not, if that’s the reason why they believe you don’t do your fair share?

“None of my sisters offered me a room”. Did you ask?

“I feel guilty staying at my parents home. There isn’t a bed and I feel like a guest at parents”. For pity’s sake, get a portable ‘bed’, and store it there. Many of us do the same when a parent dies at home – I did myself. Which will be worse? Feeling like a guest, or not being able to be there while your mother is dying of cancer?

And the first one: “My family have no idea how exhausted I am because they only see me for holidays when I feel ok”. Why are you so much better on holidays? Do you explain?

Posters on this site very very often write to an OP about taking steps to stick up for themself. One way is of course ignoring unpleasant unreasonable others. But that’s not the only way.
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Kmjfree Sep 16, 2022
So at what age would it be acceptable to have a debilitating disease? Just curious ‘cause when I turned 40 my world was turned upside down. Before I was hit with chronic fatigue syndrome I ran half marathons. It is hard to understand why friends and family don’t support you. I do not think you should have to provide proof. If they truly love you why do they need proof? OP has already stated her diagnosed conditions. If her family cares they can look them up! I am sure she is tired of explaining as so am I.
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if your sisters are being bitchy and passive aggressive and that matters to you, then you definitely need to make it clearer to them that you are actually ill. i will admit we tend to get a bit passive aggressive with my brother who never visits mom and does no caretaking, but he is perfectly healthy and capable but just doesn't want to be around he because "it's hard to see her like this." um, yes, it is, but we still do it every day! so we generally don't give him any updates on mom, he doesn't deserve them. we'd certainly tell him if she went to the ER, but my sisters and i send each other daily texts on mom when we see her and brother gets none of that. he can ask if he wants to know. but he doesn't. anyway, my bitterness aside, if your sisters feel this way about you it's because they do feel you aren't pulling your weight. if you've already explained your illnesses to them and they still act this way, then that's their problem. but if they really don't know and if you want to try to salvage the relationship, you should find a way to make it clear to them.
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