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It has been a almost a month since his transition from the skilled nursing facility to his apartment that I share with him. He is not eating and is rapidly loosing weight. Every day is a struggle to get him to eat something, and I'm getting tired of being a cheerleader. Fortunately, we have him on almost 24 hour home care, since he is not ambulatory anymore and has to adjust to life in a wheelchair. He was a WWII vet so we get 28 hours a week that they pay for a service to come out and make sure he is alright. Every time they send a new care giver it is usually a woman. He is modest and will let the new people feed or get water but not help him to the toilet. He is not incontinent, but has his pride and all his mind there and is convinced that he can make it to the bathroom by himself. I understand that being almost fully independent for 94 years, this is a huge adjustment that he has to adapt to. I have tried for three weeks to focus on what he is able to do and not what is impossible to do. He says that he would rather die than be an invalid. the rest of his life. I treat him like a human being not the man I see sitting in the wheelchair. After having 5 different care givers come out over the last three weeks, I am always optimistic that one will work out. I always stay the first time to make sure everything is alright as this is a stranger to him. I start school in less then two weeks and can not be here all the time to make sure that everything is alright. I feel guilty when starts yelling at me and 99 percent of the time I just let him do it, but I am getting tired of the apologies afterwords for his viscous attacks on me. I know that he is hurting both physically and psychologically but I'm exhausted. I am looking forward to going to a care giver support group to gain human contact and listen to other stories from people. I have graciously taken care of him for almost 4 years now and I am ready to just walk away. Every time my family talks is almost always about grandpa and what is going on with him. I am striving to find balance where he is with a caregiver and I can have a life as well. I am just so frustrated that I don't know what to do anymore. I know that this situation is not unique and people have it far worse than I do, but I feel like enough is enough. I am tired of putting my life on hold, or sacrificing happiness to make sure he is ok. New year's eve was spent checking breathing as he went on liquid morphine. I feel like I just want to walk away. I look forward to hearing suggestions, on how to deal with telling him that he is not an invalid, and that we are trying to keep him safe. Please help.

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This is an anwer from another website about what conditions qualify you for NH care. In your shoes, I would start looking at Nursing Homes in your area (many provide BOTH skilled nursing care and what I think you are calling custodial care) that would be acceptable to you and that would be affordable to you with the VA benefits, his resources and possibly Medicaid.


There are no specific health conditions that qualify someone for Medicaid coverage of long-term nursing home care. Instead, Medicaid looks at whether nursing-home level care on a daily basis See also:
Does the Department of Veterans Affairs seek reimbursement for a veteran's nursing home care? is "medically necessary" for the person applying for coverage. This is determined by a person's overall physical and mental capacities, not by any specific illness or condition. One of the ways Medicaid judges this medically necessity is by looking at the person's ability to perform -- without assistance -- what are called "the activities of daily living" (ADLs), which include bathing, walking, dressing, eating, using the toilet, and getting in and out of bed or a chair. Depending on the rules of the specific state Medicaid program, a person might need assistance with two or three of these ADLs in order to qualify for long-term nursing home coverage.

In making its decision, Medicaid will not just take your word, or that of other family members, about your mother's condition and need for care. Nor will Medicaid simply accept the judgment of the nursing home itself, although it will certainly consider the level of care it has been providing your mother over the previous years before her application for Medicaid coverage. (They won't just take the nursing home's word because the nursing home has a financial interest in being paid for care.) Instead, Medicaid will require an order from your mother's regular doctor stating that nursing home level care is a medical necessity for her.

When the time gets closer that your mother's money will run out and she'll apply for Medicaid coverage, get in touch with her regular doctor and let him or her know that this issue of "medical necessity" for nursing home care will be coming up, asking whether the doctor is ready and willing to provide the necessary order for this level of care. If the doctor has not seen enough of your mother recently in order to make such a decision, you may want to arrange for her to be examined by the doctor so that the doctor has enough recent information to provide the necessary medical order.
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You mention other family, why are they not involved with his care? This is a lot for someone of any age but particularly a young person who should be establishing their own life. You are doing a wonderful thing but other family members should be helping with Grandpa!

Talk to your family about at least getting the weekends off. With school starting, you need personal time and time for study. Best of luck!
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Having looked at your page which I apologize for not doing at first, I have an idea of what might being going on with your family. They know that you are going to school to become a nurse. Wow, I can see their brains thinking now "free medical help from a relative who is going to be a nurse!" There is a German word for what I'd like to say in English which I don't know how to spell but either word would not be appropriate for this site. Did or have your grandparents ever pay you anything as their caregiver by setting up a signed contract that they would pay you so much for you doing various caregiving tasks for them which would be listed in the contract. If not, then I can see this as what your family wants to continue at your expense. Either way, whichever is true, does not really matter unless of course you stay stuck, but at 38 it is high time for you to finish your education, become a nurse and fly to create your own life. You are not getting any younger and the longer you wait the harder this will be to do. I am cheering you own to move on! You can do it. Remember, there is no try (that means a half hearted attempt) there is either do nor do as Yoda said in Star Wars.
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My mother's 100 days are up in about a six weeks. She seems more cognizant now than before, but I dread the day she will come home. I've become less stressed since she entered the rehab facility, but once that's done I've been told I have to either apply for Medicaid and hopefully there will be a bed in that particular facility (which I love). Nobody could afford that on their own. Assisted living starts at $5500 self pay only! But there are nursing home beds that are on the same floor as the rehab. The only thing she couldn't partake of would be the PT/CT. Everything else would be available.

I'm feeling guilty if I leave her there because the other day it was the Whoa is me, etc., and I'm just wondering if the fact she's back on her paranoia drug is helping a bit with the "I have to go to the bathroom one hundred times a day" (a bit of an exaggeration, but it feels that way).

I know what I SHOULD do, but I'm also feeling 'bad' about actually having the ability to tell her what she's going to do.

That being said, it's easier to give advice than to take it :)

What you should do is take away the love you have for your grandfather and just tell him, This is how it's got to be. I can do that with my mother and have, but I've got to tell you that when older people get these ideas in their head because of their dementia (and the majority have dementia as these ages) it's hard, really hard.

Having said that, damned it's hard! And you're going back to school? Having done that in my late forties (with no one to take care of but my then husband) I can't even imagine doing that with an older parent in the house, even with the help. The help is not there at night and that's when you need it most.

You have to learn how to say, No and you have to learn how to remove yourself from the love you feel for him to the position they take in rehab/nursing care...i.e., this is another older person and we need to do what is best for him.

YIKES. It's hard. It's darned hard!
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Why couldn't grandpa stay at the snf?
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because his 100 days was up, and he didn't qualify for skilled nursing, only custodial
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Sorry to ask so many questions. What are his impairments? Does he have Dementia? Would he qualify for Assited Living? does he not qualify for a Veteran's Home? have you applied for Medicaid? Have you worked with a doctor who is savvy about Nursing Home requirements? He's non-ambulatory and needs help with all his ADLs; that sure sounds like he needs a nursing home to me.
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Why are grandparents placed in the care of grandchildren so often by the parents? I guess it is a cop out, but they need to be the ones coordinating his care not you! You want to be a bigger person in dealing with your grandpa whom you are very nice and good hearted to take care of the best that you are able but you are going back to school soon and have your own life? Start being a bigger person when dealing with his children, your parents. Doing is this for years while they have been doing who know what has been unfairly taking advantage of you. If you need the support of seeing a therapist to set good, solid boundaries around this and to stand up to your parents plus any other adult children that he has then do it! Make it happen! Start a new path today!
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