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Mother has Alzheimer's, her md referred her to hospice. First she qualified, then she didn't. I work and she is alone all day. Now what?

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I hope this isn't repetitive. I started a comment but somehow it disappeared on my computer, so I don't know if it will post or not. Anyway, I was saying that you might consider visiting nurses. I contacted a private VN agency, they came and evaluated mom, then they contacted her dr and got the orders they needed to start seeing her. Her care is through medicare, and she has a lady who helps with her bath 3x/week, a nurse sees her 1x/week, they draw blood if the dr orders it, she's had portable x-rays done at home when she's fallen, and she's also had physical, occupational, and speech therapies, all at home. If she were to qualify for medicaid she could have a provider 5 day/week for 6 hrs/day. The medicaid rules and availability depend on where you live, they are different between states. The VN also have a social worker on staff and she was great about explaining mom's eligibility for benefits. As far as I'm concerned, the visiting nurses are ANGELS in disguise. Don't know if I could get by without them.
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Next week is our last week with the Visiting Nurse, and I agree, they are wonderful.. However, in NJ you have to have a need and it lasts only a short time. Once you are deemed better, they have to stop coming. It was great. Last Christmas, mom fell and we had the OT, PT and a helper twice a week for 2 hours. It was great, but not enough. Once they are on Medicaid, they get more services, but still, it is never enough. We can hire through Care Connection a RN who will come for 60.00 per visit. We are starting one soon to come twice a month. It will be a big help. Hope this was informative.
Linda
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It sounds as though she needs to be in a nursing home under 24/7 care. If she only has social security, she qualifies for government assistance. Contact your state council on aging or a medicaid office to find out how to begin the process. She could wander away during the day and no one would know.
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I wanted tro thank everyone. I called the Hospice and talked to the person in charge and complained. He called Mom's doctor and they called me with numbers to call for help. We are in California and she has Secure Horizons. I just got off the phone with their advanced wellness department and she is qualified. They are going to come out friday for an assessment and then have someone come a couple of hours 3 times a week. But the best part is they are going to help me get her into a facility that will accept her SSI and get her on medical. I just hope they don't tell me on friday that she doesn't qualify like hospice did. She can't be left alone anymore and it's so sad to watch. And of course the guilt is unbearable at times. She used to smoke until April when she set my patio on fire. But still asks for smokes and I just keeping saying no. My Dad passed away 9 years ago from cancer and I told him I would take care of Mom. Sometimes I just feel like I'm not doing enough, that I could do more. And then there are the times I resent her and the guilt is so bad for that.
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Mia,
My heart goes out to you. I know exactly what you mean about the guilt, guilt for not doing enough, guilt for the resentment, guilt for the anger, guilt for impatience. I think anyone in our position has to deal with the guilt thing. Someone once told me to chill on the guilt, that I'm only human with all the weaknesses and foibles that go along with being human. If we didn't feel guilt, we'd be aliens or something! You are doing what you can within your own level of emotional strength, and you can only give so much. I know my well of giving and compassion isn't bottomless, and there are times when I just run out of steam. So you aren't alone, and you are NOT a bad person for feeling the way you do. Hang in there!
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What state do you live in? You should check in to local agencies that provide Adult Day Care Services such as Easter Seals many of them specialize in Alzheimer related illnesses
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Mia,
I know exactly how you feel. I too promised dad that I would take care of mom. She reminds me every week that I said that I would never put her in a nursing home. Mt words have come back to bite me. I have learned never to make promises like that sinceI can't tell what the circumstances will be in the future. Glad to hear that you are getting help!! Be tough and don't take no for an answer.

Good luck
Linda
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Lissa is soooo right. My dad was rejected the first time, and then I realized what I needed to say in order for them to accept him which they now have done. They have some patients they have had for two to three years, so the six month thing is a misnomer. Tell them what lissa suggests. It really is all about getting Medicare to pay. I find it so hard to believe your mother is not accepted. My father has his bodily functions as well. Something is amiss here. Check into other hospice programs. Do not give up!!
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True. Pop had his bodily functions and was in for over 14 months. Good luck!
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I'm sorry to hear about the denial of hospice services. It is a blessing that Alzheimer's Disease finally qualifies at all for hospice. That was not always the case. I can say enough about the great work adult day health centers so. In Massachusetts (don't know about other states) they are qualified as "day care" having a social model or "day health" having a clinicial side to the daily care as well. Many accept Veteran's benefits or Medicaid. Often the center will provide transportation to and from the program. Good luck.
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