Morally Conflicted about Nursing Home

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Hello jstevens33, welcome to the forum. You will get a lot of good information here and although some of it might be blunt it is all from experience and meant to help.
I am sorry to say that there is nothing affordable about this disease. If your grandmother does not already have long term care insurance (which is a special kind of insurance that has nothing to do with Medicare and would cover care in the home as well as in a facility) she will not be able to get coverage after a dementia diagnosis. Care for an Alzheimer's patient is a mix of family care, private pay, and Medicaid. Exactly how much of each is different in each situation. There are medicaid programs (often called PACE) that provide care in the home but it is not 24/7 care and usually requires a family member to live in. Also these programs are not available in all communities. One of the least expensive options is Adult Day Care cobbled together with family covering nights and camera supervision in between, but this will not be viable long term. You can get live in caregivers, but even if you do not go thru an agency it will be expensive. Facilities offer increasing levels of care, starting with Assisted Living, then Memory Care, and then Nursing Home. In the first two you can get semi private rooms, private rooms, or small apartments, with increasing costs. The cheapest you are probably going to find anywhere start at 5K per month and go up to about 15K per month. Another option in many states are what are called family care homes, which is basically shared housing for 5 to 6 people in what looks like a regular home that has 24/7 live in staff.
You are going to have to learn a lot in a short time frame in order to stay ahead of your grandmothers needs. If you go back to the list of "Discussions" you will find an area called "groups" under that look for "New Caregiver Help". It has a lot of useful information.
When your grandmother said do not put her in a nursing home, what her emotion was saying, was do not put me someplace awful and abandon me. You are not going to abandon her, so you are going to keep your promise no matter where she lives.
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Hi jstevens - agreeing with towhee - and any of us on this forum will say we HATE this disease!
Also agreeing that maybe through the day, check out adult daycare (we call it the 'senior center' for MIL), but that would only help you through the daytime hours.
Check into senior services in your area and maybe see what's available. We have a dear person who helps us through the day, and then DH stays there at night. (a bizarre way to live-ugh! but she gets extreme agitation with me because I am 'not supposed to be there') MIL has long-term-care insurance, but there is a cap. If we activate using it too soon, we could run out when we would need it the most. So yeah, everything is darn expensive! You could also check to see if she qualifies for medicaid, but there is the look-back period even for that.
You would not be putting her in a home, the horrid disease would. And you would still be her advocate. That wouldn't stop! But you'd have the 24/7 care for her that is just not sustainable for 99.9% of us.
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Your local commission on aging might be a good place to call and get information on resources available. In my experience they gave me several other numbers to call for information. It was a process, no quick answers. Her house could possibly be sold to cover assisted living, but the care there would be limited. Memory care will be nicer than a nursing home, but also needs to be paid for out of pocket and is very expensive. In my opinion it’s not fair to ask that someone not put them in a nursing home. You cants prevent her from getting dementia. You can’t just grow money on a tree for 24/7 in home care. Bringing her into your home would probably mean quitting your job and take a lot of time away from your family. How do you pay your bills then? You are in a very difficult situation.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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