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New - Aunt with MS - looking to save from nursing home.

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    New - Aunt with MS - looking to save from nursing home.

    Hello group, long intro..also looking for feedback on the reality of the thoughts running through my brain. My aunt is 65+ and has had MS for over 30 years, when I was younger I didn't really understand and the family just took it in stride, some days she'd be in a wheelchair, other-times a walker, as time passed incidents occurred where she fell and broke a bone a few times. He boyfriend and son are very slow about getting her things she needs or getting things in general done (like POA, long term / heavy care plan, even small stuff now that she's at the nursing home like getting more depends or off the tracfone and onto a pre-paid US Cellular account)


    Now she has edema in the legs and very limited mobility, can only stand for 5 min. Her current house is in no way set up for a wheelchair; no ramp, narrow halls and the bathroom forces her to take 8 or more steps from doorway to toilet. Her boyfriend /husband of the last 40 years is supportive but also disabled (serious back injury) and can't do really anything to help as much as he loves her. Does help will small meals but will sit back and let her do it herself or let her go to the bathroom herself as 'he can't help' between his back issues and her weight (which isn't unhealthy)
    His routine is really sleep watch tv chain smoke and drink beer, i don't know his feelings other than won't do assisted living due to no smoking policy. Currently she is in a nursing home with medicare and it doesn't look good for release. I know the discussion of her getting an apartment close to his house has been talked about but don't know the reasoning for why it wasn't done.


    My partner and I have been looking into buying a home; after breaking down tonight and seeing my happy aunt depressed she can't go home I am seriously looking into getting a home that is big enough for them or at least her to live on the ground level that will have a wider hallways and bigger bathroom with shower stall. While I'm in it for her, with the little research I've done in IL I would be paid a stipend for taking care of her, he needs as well as she would have her disability check and possibility a tax break, this would be much better than paying for a nursing home monthly cost. Although the place I would be looking at would be closer to work and there-fore 20-30min from her boyfriends house if he didn't come with.. plus I've always had the dream of wildlife rehab so would most likely be a place in the country with a little bit more room for animals if that is still a possibility with this thought & time in the day / week


    I know the disease will only progress and even with my partner support, hopefully family support, meals on wheels (if possible in rural area), if medicare will cover it a nurse to come in a few times a day or each week, and then something routine like adult day center, something non-profit she can do and help with, or bingo or something for socialization/activities it seems like a better solution...than a nursing home..I've worked for them before; I know how crappy they can be..good ones can be very good but for the cost and will medicare pay for that.. Pros and major cons are appreciated or anything that I'm not thinking of? As fyi I was CNA for 6 years before switching to animal care and have dealt with Alzheimers as well as bad MS in the past, so I do know the deal I'm looking at, how much work it'll be on top of 'life', the fact that she may end up dying in my home/having hospice situation at the end..but mainly looking for advise thing to put on the check off list, pros and cons that sort of thing. Before really bringing it up and talking with the family about it aside from my one Aunt. Thanks and hello

    For names possibly above that may need a who is that? - Ernst = My dad, Cindy = Aunt with MS, Reva = Aunt in CO that is very supportive an talks with Cindy frequently. LaVaughn = Cindy's boyfriend / husband that they have lived together for the last 40 years and disabled himself. Chris = Cindy's son.

    I have no kids and work as a Practice Manager of a Veterinary Clinic, my mate is a Mechanic from home / gets SSI for being Bi-Polar although has been stable for the last 10+ years. I have a lot of animals that are very well behaved and Cindy loves interacting with; I have no plans to ever have children although I have had a dream of running a wildlife rehab center out of my home for my whole life..however having worked at nursing homes the idea of letting a close family member be in one for a long period of time really bothers me when I know visiting is hard for family members and even I have to admit I would make it once a week if possible due to work and life schedule and that makes nursing home life very depressive and lonely for the family member.
    Monica

    #2
    Hi Monica and welcome!

    I have to give you much credit for thinking of caring for your aunt! With your background of being a CNA, it seems like you understand what her needs are and the ways to achieve them.

    If you have the means and knowledge, it can certainly be a more favorable living condition for her. Are you maybe suggesting that her boyfriend will also be living with you as a possibility? If so, are you willing to take care of him as well? Can you live with a "sleep watch tv chain smoke and drink beer" kind of person, even though he loves her?

    Not trying to be judgemental here, but it seems to me that if he also comes to stay with you, it could conceivably be an added burden to you. Caregiving burnout is a reality.

    I'm sorry no one else has weighed in here and given you more feedback, but I really applaud you for trying to keep her out of a nursing home for the long term. There's lots to think about and I send you and your aunt well wishes
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Hi Monica,

      I want to thank you for looking out for your Aunt. Sh is fortunate to have such a wonderful and thoughtful niece.

      You appear to have your eyes wide open. What about your partner's? I would make sure you have a good conversation on the added responsibility of your caregiving and also any expectations you would have, if any, for their support. I am sure your Aunt would not want to be the cause of tension in your relationship.

      The thing that popped out at me was the rural setting. Can you get the services you need? Before offering anything, I would do that research to see if feasible. If not, then are you willing to live closer to an urban community?

      If things look feasible from a service availability and partner standpoint, then maybe look at finances. This would need to include your Aunt's. If her partner is on SSI, without your Aunt's income, would he be able to be on his own? If not, are you willing to also have him in your home and potentially be part caregiver to him? Are you offering to cook, clean, etc..for them? What help will your cousin or others be? And what happens if your Aunt passes before him?

      I think you need to have Frank conversation about roles and expectations before any offer is made.

      I pray you can find a solution that works for both you and your Aunt. We should all be so lucky.
      Kathy
      DX 01/06, currently on Tysabri

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