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I am a 75 year old polio survivor disabled with Post Polio Syndrome. I require assistance with many activities of daily living. My sister who manages care for our 94 year old mother who is in skilled nursing care resents me that I've had to stop helping take mom to appointments, etc. She frequently expresses her resentment toward me. My husband is my caregiver now and I cannot volunteer him to care for my mom as sister suggests.
Husband's family has for years used us as their 'hotel' since we are between their homes and trips South. How to tell these family members to stop asking. Stop asking me to take mom to doctor when I cannot walk far myself. Stop asking to stay at our house when I can't cook or clean regularly for us. They don't seem to want to accept that I'm not available nor is my husband. Not the way we want it but the way it is. Suggestions?

I'm sorry that you are experiencing PPS. That just stinks. For the least amount of drama I wouldn't make any sort of "announcement" about ending your gracious hosting -- I would take it 1 request at a time and simply (and unapologetically) tell them the truth: that the ravages of PPS now prevent you and your husband from any further overnight hosting. If you'd like them to still visit, then be sure to make it clear that they are welcomed to come for a few hours. It's ok if they are disappointed. They'll get over it because that's what mature adults do if they have any empathy for you whatsoever. If they can't accept it, then you will need to accept that they are just jerks and don't talk to them anymore if that's how they're gonna be. You need to defend this boundary, so do not cave in.

Your sister: is it possible she is burning out? How often does she take your Mom out for appointments? Are they mostly medical appointments? Maybe offer to help pay for her gas or for an aid to help with these appointments, or talk to her so she can accept that maybe Mom doesn't need to go so often. Help lighten her burden. More details about what she's going out for would be helpful.
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Reply to Geaton777
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If mom is in skilled nursing why does she really need many outside appointments?
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Reply to lkdrymom
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Sorry you are dealing with this. Expect pushback from your family members, but hold firm. Don't apologize. Expect them to come back to you with the same question or proposal or self-invitation a few times before they realize you mean business. "It's unfortunate but I can no longer handle overnight guests. We'd love to see you when you are in town but 30 minutes is my limit. Thank you for understanding." Don't go back and forth with them.
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Reply to YaYa79
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Agree with the two answers. Keep saying no. Hold your ground. They will keep asking and asking trying to see if they can break you. Hold firm and say no until they get the message. You will become quite unpopular for holding boundaries for yourself, but at least you will have your life back.
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Reply to Tiredniece23
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How do you tell family you can't meet their needs?

By coming right out and telling them a plain and simple 'NO'.

You don't have to take mom to doctor's appointments from a nursing home. It's the responsibility of the nursing home to make sure her medical needs are met. This is why they're getting thousands of dollars a month for her care. I also want to say that you have my respect for not 'volunteering' your husband to do caregiving for your mother.

As for your sister and your husband's family, tell them to shove it where the sun don't shine, sister. You don't owe them anything. Tell your sister to hire a caregiver to take mom to appointments if she can't and tell your husband's family to find hotel because there's no vacancy at your place anymore. My guess is these people are also likley freeloaders who don't offer a cent or help out in any way when they stay at your place. Hell no.
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Reply to BurntCaregiver
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Dawn88 Jul 10, 2024
You nailed it, Burnt.
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Start using the ever powerful 2 letter word NO.
NO I can't take mom any longer to her appointments.
NO you can no longer stay here with me as it's just too much for me and my husband.
And quit answering your phone when the family calls. Let their calls go to voicemail and only return those calls if it's an actual emergency.
Shame on your family for being so incredibly ignorant of the poor health that you're in and for only thinking about themselves.
And tell your sister to quit making these doctors appointments, as that will make every ones lives much easier. I'm sure your moms facility has a doctor that visits the facility on a regular basis.
So start practicing saying the word NO. Once you get used to it, you'll find that you really like it.
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Reply to funkygrandma59
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Tell the sister flat out, "My health has declined to the point I can hardly walk myself, and my husband is taking care of ME ONLY now."

Sister has Mother in a SNF facility, so she can shove it. Why can't she drive her?The facility should be arranging the Doctor rides anyway.

Let the family freeloader calls go to Voice Mail. Pick out a few budget motels in the area and get prices and numbers. Have hubby tell them, "Our house cannot be a motel anymore, its too much work for us both, all the cooking and cleaning, after doing it for X years. No exceptions. You can stay at the nearby Holiday Inn for $80 a night, the number is (800) 000-0000. We can meet for drinks or dinner at their restaurant, once you make your reservations."
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Reply to Dawn88
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I feel like a polite No could be the way. A simple No. Then say no more.

Give no reasons, nor explanations.

You have given valid reasons.
Sister & others have choices. They can choose to respect your answer. Or not. They can continue to push to get their way. But this lack of respect has consequences. It can damage your relationship.

I have an in-law like this. I have learnt to simply say No.
When pushed: I say No.
When asked for reasons etc: No.
When asked again I say : I said No.
When asked again I say: I said No (in a little louder voice).
I have even had to add "Maybe you didn't hear me. I'll say it again. Louder. NO".

Then the tactic changed to Don't you want to talk about it? WHY don't you want to talk about it? Relentless.. Arrgghh

So low contact is my approach now. It was either that or a megaphone! 📣
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Reply to Beatty
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I was so surprised when I found out a classmate suffered from this. She was an athlete. Was in every sport she could be in. I heard that the disease debilitated her. I thought that had to be hard for someone who was so active. In her 70s too. I think husband needs to stand up to the plate and tell Sister that you are not capable of helping in any way. That you are pretty much 24/7 care for him.

His family that visits...be honest, you would love to see them but you can only offer them a bed and bath. They may have to make their own bed. Meals will have to either be eaten out or ordered in. You just can't do it anymore. We have relatives that use us as a stopping point between the South and the North. We did chinese one time. Everyone picked their favorite and we had Smorgasbord. Paper plates, paper cups and plastic. I even had a SIL bring her own coffee pot because we don't drink it. Do not deprive yourself of seeing these people. Is your home really that bad? I use alot of Swiffer products. Sometimes a good sweeping, dusting and wipe down is enough. My Mom always said "If they are good friends, they are here to see you, not your house" I think on the whole people will understand. I had a cousin with MS. She was having company flying in from Wyoming. Mom and I went over and did a quick clean. Made up the beds.

Your mother is in a SNF there really should not be the need for doctor visits. There are RNs, LPNs and aides that are caring for Mom. An MD associated with the SNF. Moms NH had 3 MDs and I was able to pick one out of the 3. There were no doctors she had to see. She was stable with her Thyroid the NH doctor could test her to see if there were any changes. Mom gets 3 meals a day. Her laundry done. Toiletries are provided. The only thing she may need is clothes. If Mom has Dementia then Sis does not have to visit everyday and when she does an hour or less is enough. Sis is probably putting more burden on herself than she needs to. And thats not your problem.
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Reply to JoAnn29
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Beatty Jul 11, 2024
"Sis is probably putting more burden on herself than she needs to. And thats not your problem."

Agree. Not your fault either.

Sister may be stuck by her own thoughts: of 'Family Only' must help.

Her first task may be to update her thinking to : Family PLUS Non-Family can help. Second task will be to arrange that extra help.
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Regarding sister, it might help if you take her with you to one of YOUR medical appointments. Your sister has known you with PPS for many years, and you have always coped. You probably don’t look any different, and Sis is still expecting you to cope. Things are getting more difficult for her too, and the last thing she needs is for you to be less available. Sis is not behaving well, but see if you can get her to understand a bit better. ‘Things are different now for BOTH of us. How can we change the way we deal with M’s needs?’
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Reply to MargaretMcKen
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