Any help or suggestions on where to go to get financial help for taking care of my mother?

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I am wanting to take my mom out of the nursing home and take care of her myself. I will be retiring in a couple years, so I would have to quit my job. I am trying to find out how I could get paid just enough to pay the basic rent, utilities, etc. Medicaid pays the nursing home $5,000 plus the nursing home takes all but $60 of her SS check. Yet, Medicaid wont pay me even 1/3 of that to take better care of her at home. My mother will be 89 this year and has dementia and I will be 62. I live by myself and don't do a lot of things outside the house. I work in the yard and garden for my free time. I will be collecting SS in about 3 years so I just need the money for a short time, but I so want to bring her home. She has no resources other than her SS. My father was a Veteran, but he passed back in 1998. Mom has lived on her own up till about 4 years ago.

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I would think 1/3 of $5000 and your mom's social security check should be enough to get by , but I don't know where you live. That is more than we make. I work mostly from home and my husband stays with mom when I need to go in. Be sure you are prepared, because as others have said, it isn't a picnic. But I would never change it...my mom will never go to a nursing home. She is now in stage 7 Alzheimer's... That means we are in the final stage. Just so you know what to look forward to.... Mom only sleeps about 3 hours in a 24 hour period, sometimes she goes 2-3 days with only cat naps (10-15 minutes at a time. She has a hospital bed, and I sleep in a recliner by her bed. She hasn't walked in a year and a half. About a month ago, when I was getting her ready in the morning, she had a full body seizure. I thought she was going to die in my arms but we made it through. She has not been out of her bedroom since. We used to move her to a recliner in the living room in the mornings, but now she is so rigid it is difficult to get her in the wheelchair to transport her. She hasn't been able to feed herself for over a year and hasn't even requested food for 3 months. I just feed her small portions about 5 times a day. I need to watch her carefully because her swallow is diminishing. I have to prompt her to swallow and carefully check to see that no food is pocketed. I also have to thicken liquids and carefully keep her hydrated. She has been totally incontinent too for about six months. That means changing her...in the bed. It is challenging to keep her clean and dry enough not to get those all too common UTIs. They are tougher for us as my mom has a severe allergy to penicillin. Mom can't really communicate, but talks almost constantly all day, all night, sometimes happy stuff, sometimes not so happy, but always constant. She had some pretty rough life situations when she was younger and has both hallucination and delusions. We are not big meds people so I don't pump her full of drugs. We did try a couple of sleeping meds recently but they didn't help at all. We bathe her, dress her, brush her teeth and hair. We make sure she gets enough protein in her diet so her skin stays strong (we have not had any skin break down or bedsores) but that is another issue to worry about. We carefully check her each morning and evening for any signs. She has to be repositioned every 2 hours. I love my mom and there are many wonderful moments in caregiving, but most people don't realize the hard work. You can't go on vacation, or even to the zoo with the grandkids. I am happy to give this service to mom and lucky my children and grandchildren come hang out with us often, and cover for me to run to the grocery store or out for a little break once in a while. Changing her is too tough for them so I never leave for more the a max of 2 hours. I wish you much luck in bringing your mom home.
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As a surving spouse of a Veteran, there is a little known "Aid & Attendance Benefit" from the VA. Obtain the document DD 214, call them up if her husband had even one day of active duty in an officialy declared war.
There is much written about this right here on the AC forum.  

Look into getting private caregivers at the NH.
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No nursing home provides perfect care. (Some come a lot closer than others.) But family caregivers don't provide perfect care, either.

About these incidents that you are justifiably upset about:
1) How do you know the staff forced water on your mother while she was lying down? Did you see it? Aspirational pneumonia is unfortunately common in elders with dementia. My husband had aspriational pneumonia twice and he lived at home the whole time. People can even aspirate their own saliva (which is full of germs that don't belong in the lungs!) Be aware that Mom could get aspriational pneumonia again, on your watch.
2) UTIs are common, and you know your mother. By now the nursing home does too.
3) Loss of mobility is quite common in dementia. Nursing Homes generally love to charge for every service they can, including PT. But they must abide by insurance regulations or they won't get paid. What do you intend to do about this at home? If insurance won't pay for PT in the NH they won't pay for it in your home, either.
4) That fall was absolutely dreadful. Nursing homes cannot use restraints on residents. How are you going to prevent Mom from falling at home? My husband fell many, many times at home. And many other caregivers will tell you the same thing. He fell even when I was just a few feet from him.
5) The dirty hand incident is disgusting. But the NH fired the person responsible. What more could you expect them to do?

I'm sure that in some ways you can give Mom better care at home. Certainly her hands will be clean. But she may still aspirate. She may fall. She will still need a wheelchair. You won't be able to provide her live entertainment periodically, and activities in the morning and afternoon, or the opportunity to socialize with others.

Think this through carefully before you take Mom out of the frying pan only to put her into the fire.
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Because of the lack of care she gets in the Nursing Home. I do try and visit 2-3 times a week. First incident we almost lost her to Pneumonia. Because they forced water down her lying down when she was sick and caused the aspiration pneumonia. She was in the hospital for almost 2 weeks on High antibiotics. Which never completely took care of it. Then when I go into visit and she is out of sorts more "I" know what the problem is she has a UTI. I then demand them to get her urine checked. Then the Cna or Nurses just look at me and talk to me like I am a complete idiot. I have to get extremely pushy even to the doctor on call to tell them what is going on. She walked into the facility 2 years ago and they put every one in wheel chairs now mom can not even stand up on her own. I have tryed to get them to give her PT and I even told them I would make a point to be there to help her. They wont do it for Dementia patients. Then there was the time she fell out of her wheel chair face first and broke her nose and check bone. Face was all black and blue. The final straw was I went in to visit mom Friday to let her know about her sister in law passing. She was really upset I went back on Saturday and Monday she was still upset. I took her out side to get some fresh air and sun. I asked how she was doing and she said not good. She showed me her right hand. She had dried Feces on the top of her hand, cuticles and under the nails. I took her back in the ask the nurse how can something like this get past them? They had the CNA that got her out of bed to clean her up. But when she was brought back to me her cuticles and under the nails she still had some on her. So I got pissed I took her into her room and had them give me a pan of soapy water to soak her hands in then I cut her nails and gently cleaned her cuticles. Mom was so upset and embarrassed. I did issue a complaint to the Director of Nursing and she let me know the CNA no longer works at their facility. What would of happened and how long would of she had this had I not showed up that afternoon just before she was to go to dinner? Sorry to be so long but thanks for letting me vent. The way these NH Dont take care of our elderly just makes me sick to my stomach. What is a family member to do? For what they are getting paid we as a family should not have to constantly fight the system all the time.
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Medicaid is the only program I know other than long term care insurance that pays for in-home care. Has your mother been assessed for what kind of care she would need, so that you know what they would currently pay? I am not familiar with VA programs. Have you looked into that?

Is there a possibility of cutting down your work hours and spending more time with Mom where she is? Your presence would surly mean a lot to her.

As I'm sure you know, dementia progresses, meaning it gets worse. There is no way of knowing how long you would be able to provide the care she needs at home. When my sister retired our mother moved in with her. That lasted 14 months, and Mom spent the last 2+ years of her life in a nursing home, very contented. Most people with dementia reach a point where they need three-shifts of wide-awake care.

You want so to bring her home. That is understandable, and might make you feel really good. But the focus should be on what is best for Mother. Why do you think it would be better for HER to bring her home?
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