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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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Adult Day Care Centers are a wonderful way to access care for individuals in your situation. There are a host of funding sources that can assist with cost depending on personal financial qualifiers. This resource is often the most cost effective choice for caring for memory impaired individuals and can have a tremendously positive impact on slowing the impact of the disease. This alternative provides a respite for the primary caregiver and allows for constructive and purposefull time for the client. Best of luck, I hope this helps.
Hugh
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Thank you. One person came from hospice and said she qualified, she needed to be put in a facility and said they were going to have a social worker come in to get her on medical. She only has social security and no savings. Then the nurse came several hours later and said she did not qualify because she still has her bodily functions. And she has gained weight, not lost it. She doesn't remember eating and eat constantly. I work all day and she lives with me. She is 79. We have no other family. The stress is unbelievable. When the nurse said she didn't qualify I just broke down and couldn't stop crying. She said I needed help but their agency wasn't the right one. And couldn't tell me who to call. Her doctor is the one who had them come out. That was so horrible, I felt so relieved when I was told she did qualify and then they took it away. I feel so defeated. She hasn't showered in over a month and she has no memory. She forgets what you tell her as soon as you walk away.
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Dear Mia, I am sorry to hear about your Mom, and so sorry to hear about your stress level. I emphasize with your crushing disappointment, and dashed hopes. I can relate to shedding tears and to a loved one struggling with Alzheimer's. It is extremely stressful, and to think she's alone all day must add to yours. Are you determined to keep your Mom at home? Have you applied for Medicaid? There may be other solutions that will help you and your Mom, so don't give up the search. Perhaps a Senior Center can provide you with resources, as well, such as was recommended by Hugh. Take care, and let us know how you're doing. Bless you.
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Mia,
My dad was in hospice and had his bodily functions. Can you get another opinion? Pop was in hospice for 16 months. If another doctor refers him, will that help? God Bless
Linda
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you need to put a pull up diaper on your mother when they come out to do the eval and tell them she forgets what she eats she forgets what time it is she has not taken a shower in a month and she does forget to go to the bathroom @ times too. its just a policy that hospice is a 6 month thing then they renew it tell them what they need to hear and get the best for your mom. Always for now on put a pad down on your moms bed for extra protection and it looks good too. good luck
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I agree- make the most out of the issue and make it look good. Darn this red tape!!!!
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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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My father is a terminal Alcohloclic has fallen broken his shoulder I live 4 hours away my half sisters who live in the same town wont get involved he refuses to go to a nursing home and will not move closer to be able for me to help care its a mess The only help he has is a neighbor , I cant quit my job and move there nor do I want to I have 14 years at this job , yet what can I do I have no Idea what to do
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Have you considered a home care agency? One that provide non-medical care such as companionship, meal preparation and personal care? There are several reputable companies.
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Mia,
you might be able to get some help from your employer. Try this resource:
John Paul Marosy is founder and president of Bringing Elder Care Home. He is a former family caregiver and has served as CEO of leading organizations in the fields of aging and home health care. He provides education, training, and corporate consulting with respect to the growing issue of balancing elder care in the work place.
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Call your local alzheimers association . They know resources. go to www.alz.org and http://www.alzfdn.org. Educate yourself, as fast as you can. Your knowledge or lack of it, determines how this will go. 60% of caregivers have heart attacks, strokes or other debilitating illnesses during their loved ones illnesses. Then where is the demented person left? Get smart- get educated. Ask for help from professionals in dementia.They know where to go for resources.
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Hi All,
I wanted to update you and let you know that I found a convalescent hospital that will do the paperwork to get my mom on medical. I went to see the place monday and it was really nice. They told me I could bring her in wednesday, which I did. I was so shocked - finally someone was helping me. It was actually referred to me by her secure horizons. Now she will disenroll in secure horizons and they will apply for medical and she will have medicare/medical. It was hard to tell her and of course she doesn't remember being told and kept thinking she was going to be able to go home and get her stuff. We had packed it the night before, but she didn't remember. I took her yesterday morning, the place is only 3 miles from my house. Went back at 6 last night and she seems to be doing so good, being around people her own age is really improtant I think. All she did before was watch tv and stare into space.
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I have another question. Last year I did have her in a retirment place for 4 months. What her social security check didn't cover I paid out of my pocket. I still owe them money. I had to bring her home in november because I couldn't afford it anymore. I had used up all my savings. I do not have her power of attorney for anything for her. She is able to sign for herself. But I did sign as responsible party. Of course they want their money and are threating me now with outside collections. I have made a few payments when I can, but it's really hard since I depleted my savings when she was there. I didn't know about medicare/medical then and they are a private facility. Does anyone know if there is anything I can do about it now? SInce I signed, am I responsible? I can't afford to go to an attorney to find out. Thanks for any help.
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"I do not have her power of attorney for anything for her. She is able to sign for herself. But I did sign as responsible party."
I do not understand why you had to sign as responsible party if your mother was competent and you did not even have POA. You really need to contact an attorney who specializes in Elder Law in your State. Most will give you a free consultation and tell you how to proceed on your own. Don't know how much you still owe the Private Pay Home but if it is a large sum, the Attorney might charge a modest fee to lower the amount you owe or have the Nursing Home write it off. Do not ignore it because this will affect your credit score and even future job prospects. Remember that Collection Agencies neither want to know or care about your particular circumstances. They just want the money. Right now the law is on their side. You need to change that as soon as you can. I think you have a good case, but I am not an Attorney and I am not familiar with Medicaid rules in your State.
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