I used to live with my mom & help take care of my granny. She still lives with my mom but she doesn't want her anymore. I want her to live with me & my mom's brother would help too! None of the family want her to go in a home except for my mother! Granny has Alzheimer's but knows who we all our & can still take care of herself. She just needs a little built of help (she's 97:-)) my granny doesn't understand my mom wants to do this to her but says she would rather live with me than go in a home! Is there any way to stop her? We always said when she didn't know us or couldn't take care of herself, then she would go in. But not now while she still gets around & dances & cleans & takes care of herself !! Thanx:-)
At which time you ask to be the guardian...
My mother-in-law, who also had Alzheimer's spent the last year of her life in three different homes. At the time we felt we truly had no other choice. Her other three children either lived out-of-state and/or were estranged from their mother with no active interest in her welfare, leaving my husband as her sole caregiver in her home while simultaneously working full-time. He did it for six years (following her husband's death) as she declined both physically and emotionally, much of it from her self-imposed isolation. Since we had almost no help from friends and couldn't afford to hire in-home help; we could barely get an evening off to go out to dinner or a movie for our wedding anniversary, much less a vacation or a weekend for ourselves, since whenever my husband was not working he was having to constantly be with his mother at her place. On the few occasions he had to go on work-related travel, he would call her and had a friend check in with her every day and fix her meals, etc. while she was told he was "working late" (otherwise she would've gotten very upset had she actually realized he was out-of-town).
Anyway, to try and make a very long story short, after the medical profession insisted (following a week's hospital stay) that she be placed in a home, that's when our nightmare escalated. Essentially what happened was, all control was taken away from her son (despite our having full DPOA and MPOA) to the point where we were rendered powerless to make any decisions or oversee her care. The secured assisted living facility where my MIL spent her last nine months used the HIPPA act as a "bully club" to deny us access to her medical and care information while simultaneously keeping her doped up on multiple antipsychotic medications, despite the fact that her Alzheimer's had long since progressed past the point where she could make these decisions for herself. I knew that woman—she hated taking medications at home; and would never have knowingly or willingly consented to all the crap they were giving her.
What we didn't know at the time was that this same facility had been fined by state authorities for a wrongful death that occurred less than a year prior and had dropped to a one-star rating. During the nine months she spent there, my mother-in-law was attacked and injured by another resident (nothing was done); contracted flu and pneumonia, was poorly fed at mealtimes, plagued by dehydration and urinary tract infections (partly because they stopped giving her cranberry juice); incurred a large bruise on her hip (which they never explained); and finally suffered a severe head laceration when, unsupervised ("for a few seconds," as the facility told it), she fell out of her wheelchair. She died three days later.
With this horrendous track record, some may wonder why we didn't just "simply" transfer her to another facility when the problems first started. Having to deal with Medicaid made that nearly impossible, since they held all the purse strings and moving her would've necessitated transferring back to a higher level of care, with all the accompanying paperwork and red tape (where we live, you make the changes and personally assume any and all financial responsibility with the facility; and only *Then* do they tell you whether or not you requalify for assistance). The local DSS (out-of county) had already cut her off once due to some little technicality they claimed was lacking. Also due to their incompetence they had underpaid the facility a few months prior, resulting in our receiving a bill for back due rent of over two thousand dollars.
My apologies for the length of this post. What I'm trying to illustrate is that, unfortunately once your relative gets into a facility, they take over all the day-to-day decisions and it's often not in the best interest of your loved one. They especially take advantage of those who don't have relatives or friends actively overseeing their care; or who are financially-challenged (and thus can't afford legal advocacy through the system). At least at home, the elderly person is not subjected to myriad health risks from other residents' communicable illnesses and unpredictable, aggressive behaviors; plus YOU retain at least some control over what goes on in your own home (or theirs). If we had it all to do over, things would definitely be done differently. But as they say, hindsight is 20/20.
I'm glad you mentioned that this home had a very poor rating and had been fined. I do not wish to minimize your experience in the least, but I will point out that this is a bottom of the barrel ALF. My mother and my step-daughter's mother (yes, my husband's first wife) are both in nursing homes right now. One in an almost rural setting the other in the heart of a major city. Both are getting excellent care and in both cases the family input is taken seriously.
There are certainly terrible places out there. Your case illustrates that. But a good facility can be exactly the best resolution to difficult care problems.
As a result the closest-located placement we could get for her was about 40 miles away. As you might imagine, that doesn't exactly encourage daily visits; or even irregular "drop-in" times where you are likely to be able to monitor the staff's actual regular day-to-day treatment of your loved one. In our case, they knew that we were most likely to visit on certain days of the week (when my husband was not working); and so they knew to have her up and dressed/cleaned up from incontinence issues (or whatever) whenever they were expecting us. So a lot of the stuff that was going on there remained covered-up until my MIL's overall health situation started swiftly degrading from all the drugs they kept her on.
Now, to their credit, my MIL was admittedly not the easiest person for facility staff (or anyone, really) to get along with. She was a "loner" during most of her widowed years, extremely strong-willed, even when she was in better health; and not happy whatsoever with her situation of being away from her home. And that's exactly how she saw it; i.e., as being HER home and no one else's. She would scarcely allow anyone outside of her immediate blood-family (most of whom were disinterested in helping with her actual care) in her house, much less to go in "her" kitchen/bedroom. There was just one neighbor whom she knew somewhat and trusted; which was the main reason I could not serve as respite caregiver for my husband (before she went into the facility), despite how desperately he needed help.
To make matters worse, she had a thyroid problem most of her life that (like many elderly people her age) had made her cold-natured, especially in her extremities. Only with her, it was extreme. It would not be unusual for her (while still at home) to have the thermostat of her central heat pump turned up past 90º, even during the summertime. My husband would arrive there after work and he'd have to change into shorts and an undershirt, with the sweat just pouring off of him ... all the while she watched TV in her living room with a space heater aimed in her direction, asking, "Aren't you *cold*??"
But as ridiculous as that sounds, imagine her going from that, to a group living situation with hospital-like tile floors (which tends to make air space feel cooler, anyway; and they didn't allow area rugs in the rooms partly due to tripping hazards); and no individual climate control. It seemed a bit on the cool side even to visitors, during the winter. She was always complaining of being cold there; but there wasn't much we could do about it except keep her bundled up in sweaters and blankets.
But anyway, getting back to the situation with the family input being disregarded, she had been on hospital ER visits a number of times during her final months. The staff and administration of the ALF refused to give us access to her medical records for those visits, just expecting us to take their verbal account for everything that happened, for whatever little information they thought we should have. Meanwhile the hospital and their resident physician's office both backed them up—the physician refusing to sign a waiver (as they "didn't want to get in the middle" of things), and the hospital totally unwilling to give us her information without that damned signed release!! Despite having very specific access provisions in her DPOA (which was drafted by a very knowledgeable and experienced elder attorney), allowing us to serve as her agent and even make decisions on her behalf, they threw the HIPAA act in our faces and insisted that we pursue legal guardianship (which our attorney had previously advised us against).
I have always hated HIPAA, but when it is used maliciously to deny family input, oversight and care for an elder who can no longer speak up for or defend themselves (like against the overuse of chemical restraints), it is an insidious law that clearly needs reformation.
My apologies for the previous long discourse; but what it boils down to is that if we had the choice to have kept our mother at home, even with home health nurses or whomever coming in, we would've at least retained some say over the course of her treatment and care; whereas after she was institutionalized our autonomy as individuals and a family was completely taken away from us.
I see from your profile "answers" that you are back on the board this month. Please give us an update :)