Im Sad! My Mom is slowly dying from a rare disease!

by ButtLight 60 Replies latest jw friends

  • Big Dog
    Big Dog

    BL, the way it was explained to me is that a person becomes eligible for Hospice care when they have a terminal diagnosis. The local Hospice here operated out of one of the hospitals in the city. You can call them directly and ask if your mother qualifies for their services which I believe are chiefly paid for through Medicare.

    They are all about making the person comfortable in the terminal stages and offer excellent support for the caregivers.

  • ButtLight

    Is that where they come to your home and help take care of them? I know the nurse would stop by my grandma everyday and help her bath, and give meds and things. Thanks!

  • Doubtfully Yours
    Doubtfully Yours

    Sorry to hear about your mother.


  • Big Dog
    Big Dog

    BL, in our case we had a choice, we could do in house hospice (which we chose) or there was a hospice facility close by. Its up to the family and obviously the person's condition as to whether you do in home or at a facility.

    Hospice set up all sorts of support things, from an aide that came and bathed dad everyday, to a nurse that came once or twice a week for med checks, to a chaplin (how the hell that ever happened is beyond me, but mom actually let this chaplin stop by as long as they didn't discuss doctrine) to a massage therapist, it was just amazing. They also arranged for all the equipment that we needed, hospital bed, oxygen, etc.

  • jgnat

    I am going to give some tough advice. A good part of the mom I remember I lost some time ago to mental disease, so I feel your anguish for all you are losing. I think you have to make peace with that loss, let your "old mom" go, and re-discover who this new lady is.

    You like her and want to take care of her. I fear it is not doing you or your mom any good at all to pretend she's not so bad to need round-the-clock care. You have to admit that you cannot provide that. I think you need a new mental image of what a nursing home can be. It is a safe place where your mom can receive regular meals and round-the-clock supervision. Not all nursing homes are awful.

    You could be the good daughter that visits mom at her nursing home. You can take her on outings to the bar with a fresh pack of cigarettes. As long as she is able, she can visit her cats in your home. You need to be relieved from the constant worry that your mom is going to hurt herself by accident.

    A chat room for fellow caregivers: Corticobasal Degeneration Overview

    I think you need more options. Here's a tip sheet on finding a good nursing home. It suggests looking for a nursing home that has "heart":

    An excerpt:

    If your care recipient is mentally fit and younger than typical nursing home residents, try to find an institution that is, if not geared to a younger population, at least a place where there is some interaction with people of a similar age and activities that are planned with younger people in mind. Check out the facility’s bulletin board. It can give you a good idea of what activities are actually being offered.

  • jgnat

    Here's a link on picking a Hospice:

    Where's frannie banannie? She has compassionate experience in this area.

  • ButtLight

    Thanks for the advice! My brother and I are getting together on Thursday to discuss the situation. He is also very concerned. The average is 6-8 years after being diognosed. Some last 13. I believe its been about 3, but we dont know just how long she had it before we took her to the doctor. If I had to guess, I would say 7 years. It seems as once you really see her forgetting, and doing strange things, it seems to get worse alot faster. Just in the past 3 months I have noticed a major change. I will look at all the option everyone has suggested. And yes my first concern is whats best for her. I guess dont like the nursing home here cause Ive been there. Most are 80 and up. Crazy ones, ones that are sitting in their poop out in the lobby! It just isnt the right place for her, not yet anyway. They did build a new one, I should go see what its like.

  • Es

    Im sorry buttlight that must be horriable to see. I hope you find something ok es

  • feelinglost

    I'm sorry to hear about your mother. It's hard to watch a family member when you feel like you have no way to help them. I am sure you will be able to figure something out to be able to help her. Keep us updated.

  • Utopian Reformist
    Utopian Reformist

    Dear Buttlight:

    I am very very sorry to hear about your mom's illness. I really hope something new comes up, or some new information, maybe a new treatment, something temporary, or even some new research, anything at all to help her out ASAP. Keep hoping and don't give up.

    Hang in there and be positive and don't stop trying, researching, asking questions, seeking opinions and finding help for her as long as there is still time. Exhaust yourself and try to keep her here as long as you can. I wish you hope, and even miracles, if they apply.

    In your corner,

Share this