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Thread: How will I know when it is time to put Mother in a "Facility"?

  1. #21
    Colorado must be in better financial shape that CA. Everything possible is being done to destroy our state Medicaid waiver attendant program. No one...not even those who are tetraplegic and full-time ventilator dependent are getting 24/7 attendant care here. PCAs who work under that program get $8.75/hour, and no benefits in my area. You are not allowed to supplement that amount in money (although you can provide free board, room, and transportation if you have the resources).Recently the state cut 20% from the IHSS program, and decreased the maximum hours to 65 hours per week (approved for only the most severely physically disabled). Yes, you may be able to find someone to take that type of job, but the chances of finding someone who is reliable, competent and not a felon, druggie or alcoholic (or worse) is most unlikely. No new applications are being taken at this time. The IHSS recipient is considered the employer. That means they must also recruit, hire, train, supervise, and fire the PCA. The PCA does not come from a agency. A social worker (not your doctor, or a nurse, or even yourself) determines how many hours you can receive.

    We private pay for my mother's attendant care. She is not now, nor will she ever be eligible for Medicaid. Her private insurance and Medicare will NOT pay for her in home care needs which are considered "maintenance, non-skilled". Fortunately between her pension and my parents' savings, we can pay for part-time attendant care right now, but we pay at least $13/hour to get the quality of caregiver she needs. Many people with disabilities do not have those type of resources.

    No one should be guilted into provide in-home care for a relative. It is great if you can do it, but if doing so puts your own health, or the health and wellness of your children, or your marriage at risk, then something has to give. None of us are happy to have to do this, but the reality is that there are sometimes when there is no choice. It is great to say we need to advocate for changes, and we all do, but the situation we have to deal with now is what we have NOW, not some maybe pie-in-the-sky that is not going to happen with our current economy nor politicians in power.

    (KLD)
    Last edited by SCI-Nurse; 06-19-2012 at 06:20 AM. Reason: fix typo

  2. #22
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    Both of my parents went into nursing homes this year, one with late stage dementia and the other with SCI and Parkinson's. My dad shortened his own independence by taking care of my mother with dementia, and my sister was about worn to the bone taking care of both of them.

    No, you cannot avoid skilled care forever, unless you die before you get infirm.

    My mate is younger than me and I have made my mind up to go into skilled nursing before I have to take over her life with my needs. Not fair to her and frankly I do not want to do that to anyone. I would rather pay someone to do certain things, if I can.

    Home care, attendants, volunteers? Did not work and my parents would not cooperate.

    Staying home is over-rated.
    2012 SCINetUSA Clinical Trial Support Squad Member
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  3. #23
    CC- you are correct that the state legislature sets the annual increase for pay raises for long term care. The sad fact, at least in MN, is that for too many years our legislature sees these increases as optional.

  4. #24
    I agree 100 percent with cripple concepts i do not believe that there is any reason someone should be placed in a nursing home. And I am speaking from experience. My Grandfather started suffering from Alzheimers around 80 years old. He was bad he didn’t think that his home was his home. He would often try to walk to his “mothers home” and she had been dead for 30 years. He at times didn’t know us but we NEVER put him in a nursing home we stayed with him took care of him and my grandmother. Then my grandfather was 84 years old when he suffered a severe stroke that left him bed bound, unable to speak, he had to be fed with a tube was on iv's, had to be cleaned up and turned over every two hours and he was NEVER placed in a nursing home. Us as his family took care of him. He had someone with him 24/7 for the rest of his life. Yes it was hard but he CAN be done. Some of you say that friends wont help and that no one will take on someone like this but i know from experience they will. Friend’s true friends help you no matter what. We never had to pay anyone to help with my grandfather. I am also disabled and in a wheelchair however I know that I will never have to go to a nursing home. My family will never allow it. I have visited some elderly people in nursing homes years ago and from the day i left out about 25 years ago i decided i will never go back to one. It was tramatic enough that i have no desire to return even to visit someone. This is just my opinion but i know that i will be jumped on and trashed for it because it does not agree with some others here but i had to speak my mind.

  5. #25
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    Quote Originally Posted by elizabeth422 View Post
    I agree 100 percent with cripple concepts i do not believe that there is any reason someone should be placed in a nursing home. And I am speaking from experience. My Grandfather started suffering from Alzheimers around 80 years old. He was bad he didn’t think that his home was his home. He would often try to walk to his “mothers home” and she had been dead for 30 years. He at times didn’t know us but we NEVER put him in a nursing home we stayed with him took care of him and my grandmother. Then my grandfather was 84 years old when he suffered a severe stroke that left him bed bound, unable to speak, he had to be fed with a tube was on iv's, had to be cleaned up and turned over every two hours and he was NEVER placed in a nursing home. Us as his family took care of him. He had someone with him 24/7 for the rest of his life. Yes it was hard but he CAN be done. Some of you say that friends wont help and that no one will take on someone like this but i know from experience they will. Friend’s true friends help you no matter what. We never had to pay anyone to help with my grandfather. I am also disabled and in a wheelchair however I know that I will never have to go to a nursing home. My family will never allow it. I have visited some elderly people in nursing homes years ago and from the day i left out about 25 years ago i decided i will never go back to one. It was tramatic enough that i have no desire to return even to visit someone. This is just my opinion but i know that i will be jumped on and trashed for it because it does not agree with some others here but i had to speak my mind.
    I am glad you had such support. My parents are in a very nice skilled nursing facility 1 mile from my sister, who visits them almost daily. Having taken care of two elderly parents for the last 5 years, and elderly mother in law for longer than that, and a mentally ill brother for the same period, she got worn out. I for one would rather be in a skilled nursing facility that be that kind of burden on someone. I would be placing my own life ahead of theirs and causing them to live for me instead of for themselves, and that's not ok with me.

    By the way, I live 1200 miles away and have others with special needs depending on me here. And, I know of cases where people with dementia died in accidents because their families could not watch them 24/7.

    I am not trashing you. I just disagree.
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  6. #26
    It would be more difficult mentally for my family to put someone in a nursing home. We are very very close and putting someone in a nursing home would do more harm that good for them. I respect your choice to disagree

  7. #27
    For myself, I'll do myself in when it becomes to much of a burden on myself or my family. We should have a right to die with dignity.

  8. #28
    If for some reason that my family can't take care of me i would also do myself in. I have thought of that also patrick because i simply can't live in a nursing home. I am doing great now for myself and yes i may have to have assistants sometimes its not that big of a deal for my family. Being put in a nursing home is not the type of life i would want to live. I would think that im there simply waiting to die.

  9. #29
    Quote Originally Posted by elizabeth422 View Post
    It would be more difficult mentally for my family to put someone in a nursing home. We are very very close and putting someone in a nursing home would do more harm that good for them. I respect your choice to disagree
    You were fortunate that family members were able to stay home to care for your grandparents. It is truly a wonderful thing to care for your family, and I do agree that it is sad that more families do not come together like this when tragedy strikes.

    However, many of us cannot afford not to work, or we lose our own health insurance, money for our own retirement, lose our homes, and sometimes our spouses etc... Turning someone, changing them, picking them up when they fall etc... can be very grueling. So sometimes you have a 65 year old women trying to pick up her 85 year old mother. Not a good idea.... soon the 65 year old has injured themselves, and then starts the slow decline.

    I have no plans on my family going to a nursing home. But I certainly understand that most families will not always have a choice. I'm sure you can relate to that, can't you?

    What is truly upsetting to me is when Patrick and Elizabeth say that they would consider suicide. Not only because this is so disturbing that they feel this would be the only option, but because of the message they are sending to caregivers.... many of whom are trying to do their best.

    It is very hard to see from each others perspective, and all of our situations are so different.

  10. #30
    hlh - you raise a good point about the impact on caregivers to have a threat of suicide to deal with. It feels manipulative to me, and I'd be very angry if my husband were to threaten this. My father was in a TCU for several weeks after open heart surgery. He had a great attitude about it and thrived there.

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