Morally Conflicted about Nursing Home

jstevens33 · June 5

My 75-year-old grandmother was diagnosed a year ago with moderate dementia, which has now later turned into an Alzheimer's diagnosis. She is starting to slowly have "out-of-mind" episodes, confusing a very close family member with their parent (her son), etc. while these are infrequent as of now, they are suddenly onset which leads me and the neurologist to believe that progression will start to happen more rapidly. With that being said, I am trying to make a plan so that she is well taken care of while also respecting her wished. The moral conflict comes in surrounding nursing homes. I still think that we are stretch away from full-time care, I am worried how I can afford an in-home caregiver by myself around the clock. My grandmother has raised me. She has given up her entire retired/ empty nesting life to raise myself and my cousins and never batted an eye or hesitated. She has never asked for anything in return except asked me to promise not to put her into a nursing home. Are there alternatives to a nursing home facility that would offer around the clock help covered by insurance or at an affordable rate? I would take it upon myself, but I own two small businesses, have a husband and 7 year old daughter with another baby on the way. While I am trying to help as much as possible, I am so heartbroken and conflicted. Thanks in advance for any help or advice!

towhee · June 5

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.

SusanB-dil · June 5

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.

weareallunique · June 5

She gave up a lot to raise you and your cousins so she wouldn't have wanted you to neglect your children in return caring for her.

It's not a moral issue, in my book, to get the best care for her - which will be 24/7 at some point most likely while raising your family. If it gets to that stage you'll still be seeing her , helping with her medical care etc , and hopefully bringing your children to visit for her to see the love she gave you is being passed down .

I think people say to their families and partners : "don't put me in a home "because they are worried they could get old and sick .

If they told their Doctor "I don't want to go in a home " the Dr would probably say " exercise , eat right , etc" and who wants a check list ? So they look to us for reassurance more than a contract , IMO. And you can reassure her you will care for her the best you can .

Morally Conflicted about Nursing Home

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