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I live with a friend who requires almost around the clock care (not quite). I work a normal full time job and thought it was a good idea to pick up some extra money working a few hours caring for her. She has someone Mon-Fri days and I am scheduled 5:30 to 7:30 pm Mon - Thurs. Off Friday night, Sat and Sun scheduled 7:30am to 3:30pm. I am having a hard time keeping firm boundaries, she seems to think I am available anytime. I enjoy caretaking but I get up at 4:00am during the week for work and really need to be completely done at 7:30 to shower and go to bed. On the weekend, she consistently asks for things to be done well past 3:30 and is very manipulative. We have had a conversation about me needing to attend to household chores etc and try to still have a social life but we are still struggling. When she requests things, would just flat out saying no I cannot, Im off right now be rude or inconsiderate? We have talked about this but since it's not working well I think we need to try a new tactic. Looking for input, advice or experience. Thank you!

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Dear binker5115,

I know we all start out with good intentions and then things start to change. Working a full time job and caretaking is very demanding. I think it can cause resentments when we are asked to help beyond what we agreed to.

I wonder if it might be time to move out and find other living accommodations. Or suggest to your friend she needs to hire an additional person to work the overnights. Or she might have to consider moving into assisted living. Needed to be changed as an adult is very humbling.

I hope you can find an option that works better.
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I didn't imply that that incident was manipulative in any way shape or form. She is manipulative as a general rule. Asking to be changed doesn't fall into that category. But I have to look out for me also, proper sleep and off time to retain my sanity.
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If she needs help to get changed, then, I would believe that she needs constant care and so that there should be a caretaker arriving each time you get off duty. I don't see anything manipulative about a disabled person who needs help, asking the only person in the house to help. What she needs to do, is to get more caretakers to cover your off hours. If she refuses, I'd consider the job and if it's feasible.

You might also re-negotiate your contract and ask for overtime pay at certain hours. If she can't afford your services, perhaps, she will seek alternate care.
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Some things, like getting changed, can't be put off, but it is OK to set boundaries about the other stuff. Maybe try something like "I'm off the clock in half an hour, is there anything you need done before then?" Then you choose which of her requests need your attention immediately and what can wait, and you retire to your room on time. And since you have a 42 page contract I assume it details time off, so don't ask, just go.
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I had a friend with ALS that I helped out. Separate from me she had caregivers. She started with morning care, then morning and evening, then live in. I didn't do that type of caregiving. But I did help with may other things including moving her twice, taking care of all financials and paperwork, cleaning out closets, etc etc.
The folks at the ALS center mentioned to me that their patients had so little control over their lives that they often tried to control anything they could! I imagine that MS would be the same! I had to put my foot down quite a few times .
BUT one big difference -- I was never there 'off duty' and not bringing her water, or doing a clean up. It may be time for additional night time assistance, since I do think it is NOT RIGHT for you to give up sleep etc to meet her needs. Her needs should be met-- but not by you,
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She has MS. She is cognitively doing real well with only some occasional forgetfulness. Handles all her own business. We do have written contract, 42 pages, that's a great idea. Last night at 830, Im in bed and she calls me to be changed. And it took a while. I started thinking about it, I was in bed, have to get up at 4 but it's very hard to leave someone in that state all night. Sort of a catch 22 it seems. She is a master manipulator, Ive seen it in action. That's not really a huge problem for me, I can deal with it.
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Living with someone that you work for is often fraught with issues. What is the nature of the person's disability? Is it physical or mental? I ask, since, sometimes people who have cognitive decline, are not really capable of processing the guidelines or using proper judgment. IT might appear to be manipulative behavior, but may also just be their condition.

Also, someone who lives in your house may seem available, even when they are NOT technically on the clock. It's a tough one.

If she's mentally okay, I'd work on ways to establish the boundaries. Do you have a written contract to refer her to?
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