Update post:
http://forums.penny-arcade.com/discussion/comment/28892756/#Comment_28892756
So for a little over a month my grandmother has been steadily declining in health, mainly because she has stopped eating and taking her medication. You might say "it's obvious that would happen," and I would agree, but she is tired of living, since she's the last person of everyone she ever knew in her generation that's still alive. She has been in and out of the hospital, officially for COPD but unofficially because she refuses to taker her oxygen. She is trying to hasten her death, but at the same time calls 911 every time she feels unwell or just bored. Her half-hearted attempt at inviting death is only creating a crisis for her family.
Currently she is in a rehabilitation center, but she is refusing to actually go to the rehab, and has become so weak that she is a fall risk, which means the center has to curtail her freedom since she's a danger to herself. She just wants to go home, but if she goes back to the hospital one more time without spending a certain amount of time at home to reset her Medicare, one of the hospital workers threatened to have her declared incompetent by the state, have a guardian appointed, have all her assets seized, and lock her away in a terrible nursing home for the rest of her life.
Today I managed to explain this to her and convinced her to stay and go to rehab, but by the time I had gotten home she called me in a panic over some imagined slight the doctor said to her, and now she's insisting on leaving tomorrow, again. For the longest time I've felt she was just a dishonest person, but recently (within the last month) I'm starting to think it really is the beginnings of dementia, which her mother had before her, or so my relatives tell me. In one of the rehab sessions the center did a mental test, and she tested marginal for judgement, so this really may be happening.
On top of everything, as this supposed dementia strips away her judgement and inhibition, her inner personality, which is overbearing, bossy, cruel, mean-spirited, manipulative and rude, has come out in full force, and no one even wants to help her anymore, be it doctor, nurse, social worker, or even some members of my family. Everyone is ready to give up on her, and she's manipulating and bullying people into letting her die.
I am not quite sure how to proceed here. She won't talk to a psychologist. Should we consult an elder care attorney?
As it is I'm considering taking off from work for two weeks and going to see she completes the rehab every day, so that she CAN go home like she wants. The problem is that while she'll listen to me when I'm there, as soon as I leave she let's everyone else have a tongue lashing and forgets or ignores everything she and I had talked about previously. I can't be with her round the clock every day. This is already disrupting my and my family's life fairly severely.
So H/A'ers, anyone who's dealt with anything similar in the past, please advise.
Posts
Caring for her was one of the most difficult things I've ever done. Making the call to stop her life support after she had a heart attack and was incorrectly intubated, was the hardest thing I've ever done. But, when you take on the responsibility of someone's care legally you run the risk of having to make life and death decisions.
There are many support groups online for people in your shoes, and I strongly suggest putting together a decent support network for yourself before taking on your grandmother's care (which is what it sounds to me like you're debating doing). If you take the time off work to get her to therapy every day and help her through it, there is very little chance you'll get to go back from there. <insert small diatribe about how we can only go into the future, not return to the past> Your relationship will change and, most likely, she'll become more dependent upon you.
Looking back, I'm deeply grateful I did everything I could for my grandmother. But the caregiver path isn't for everybody, and if you aren't cared for it's damn near impossible to care for someone else.
My first step would be to talk to an ombudsman, find out what your options are and what's really in her best interest legally where you are. The nurse that threatened her was out of line, I don't care how difficult your grandmother was being. In every hospital grandma went to (and it was as though she treated them as hotels and the nursing staff like her personal servants) had both social workers and ombudsmen to work with, and I learned a ton from nearly every meeting. My second step would be to get her the testing she needs to find out if she is competent or not. She may be severely depressed, which can take different methods to treat in geriatric patience. If she's at all religious you might want to see about having a chaplain/religiousy-person-of-your-choice spend some time with her, which is easily set up both inside and outside of the hospital and can really help.
Please feel free to PM me to vent/talk/bounce ideas off of; I wish I could help more.
Edit: try Googling Geriatric Ombudsman <your state here>
It is definitely a thing we have. I think the page you were looking for was this one: http://en.wikipedia.org/wiki/Ombudsmen_in_the_United_States
There should definitely be something approximating that attached to her hospital or long-term care facility.
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First off, if you are her primary caretaker, you should see about getting medical power of attorney. This will help stave off the threats by the hospital, because they would have to go through you to get her placed in their care.
Second, you may want to contact the local hospice. They are trained to handle end of life care, and can help with not only the medical aspects but the legal and emotional ones as well.
Edit: If you need to talk, please message me.
My grandfather is going through this right now; unfortunately, nobody in my family has the patience or moral fiber of either yourself or @Belasco , so he was basically written-off some time ago and sent off to a specialty care home.
...Fortunately, however, this is probably the best thing that's happened to him in a while. His condition, bad as it is, actually improved a bit after he began staying at the home, and his old humor and wit came back (in a diminished capacity, but it was a relief to see it anyway given what he was eroding away into). A care home's probably not for everyone, but it's nowhere near the ugly stereotype that it's made out to be).
She's reasonably healthy though, and could live another five years no problem. She's just given up. I do have complete power of attorney for her, and my mother is her health care advocate.
You could also look into hiring a sitter to help her in the rehab or at home for a few hours.
Yeah, we're hoping to to get her a nurse, a physical therapist, a cleaning lady, a cook, and a specialist for one of her meds to each check on her one day a week. It's just very overwhelming trying to put together a schedule and get her to agree to it. She thinks these people will just rob her blind.
When my grandmother was living with Alzheimer's, I believe most of the things on that list were handled by one person my family hired, and sometimes a physical therapist/nurse additionally (but she only came to administer medication and check up on her physically and such). Towards the end when my grandmother needed more constant care, my family hired a few people that worked in shifts throughout each week....but each individual still handled virtually everything. It can get very, very expensive, even just hiring a single person...I'm not sure exactly what your financial situation is (or what your grandmother's needs are, exactly) but it may be worthwhile to just see what kind of care you might be able to find for fewer than that many people. A cleaning lady and cook, for instance, are roles that could potentially be filled by the general caretaker if your grandmother doesn't need constant supervision.
Grandma was almost entirely blind (she could only see outlines and shadows) and largely deaf, one of the best things we found for her were audio books through resources for the blind combined with headphones she could turn up to levels even a teenager would find uncomfortable. The headphones also worked with her TV so she could have it up as loud as she wanted in her apartment without bothering her neighbors. I don't know if either of those things might be helpful for your grandmother, but I figured I'd throw it out there. Generally speaking, there are resources for just about everything, it just takes a time and effort to find them.
You guys have a lot of information gathering to do, and a lot of decisions to make both with and for your grandmother. Not only is each state different, what funding is available for which services can differ from county to county. In a lot of ways I was lucky, I knew my grandmother very well and was able to be her advocate. Getting old sucks, losing your independence sucks and is frightening, and far too many people forget that old people are still PEOPLE with all the uniqueness and tribulations that come with being an individual.
Just make sure they have their CARF certs.
There's a lot of text, so here's some highlights of what music therapy can do for the hearing impaired:
-Enhance auditory, training and expand the use of residual hearing
-Effectively address a number of objectives in auditory training
-- "Attention to sound, attention to differences in sound, recognition of objects and events from their sounds, and use of hearing to determine distance and location of sound can all be trained through musical experiences"
-"certain aspects of a profoundly hearing impaired person's residual hearing may be measurably improved through a systematic programme of auditory training in a musical context"
-Promote socialization, self-awareness, emotional satisfaction, and enhance self-esteem
There's a bunch more there but you get the idea. The first practicum that we do as music therapy students is with geriatric populations (I'll be starting that in January) and from everything I've heard, the dementia groups are incredibly positive experiences for all involved. If there's anything like that in your area, I would highly recommend you try to get her involved with that if it's at all affordable. It does so much to improve quality of life and overall happiness. There are other arts based therapies out there if music isn't her thing.
I would suggest taking her to see a neurologist. Early dementia can be reversed with antipsychs and SSRIs in some cases. Worth a shot!
It would be in her best interest to be in assisted living, someone keeping track of her medications and when she needs to take them, someone to do the cleaning so she doesn't have to bother, etc. It may be time for you to contact a social worker and see what exactly your options are and how you can best provide a good environment for your grandmother. It's best you do it while she is able to have some input on the situation.
Contrary to popular belief, they're not all dingy asylums from a horror movie where people go to die. There are quite a few I'd be happy to live in right now. Fact is in her current state and environment she will probably do something incredibly stupid and end out with no choice in the matter, seriously injuring herself or someone trying to help her.
So yeah, I guess my advice is call a social worker in adult protective services for your county and ask them what to do.
Can I just say how sorry I am about the situation you've landed in. It's pretty rotten when family are ill, get old and social/physical situations change.
However, can I just offer a few points.
Firstly, as we see on this forum, people can behave and act in all sorts of fucked up ways - against all reason and good sense. (Un)fortunately this ability is our innate right as fully competent adults. Just because your Grandma doesn't want to do what everyone else wants her to do doesn't necessarily mean she has dementia.
Secondly, all sorts of physical conditions can impact on your memory and behaviour, and a lot of these are correctable. Electrolyte abnormalities, medications, hormone imbalances, hypoxia (lack of oxygen) and depression can all mimic dementia. You mentioned she's stopped eating, lost interest, paranoid, anxious, lack of energy, irritable and has both chronic ill health and sensory impairment. Has she been assessed for depression? Whoever diagnoses her as dementia had better be jolly certain she's not depressed.
Thirdly, and as a follow on to above, she needs expert assessment. I would suggest that she needs to see either a Geriatrician or a Psychiatrist specialising in the elderly and/or dementia. Social workers are fine but she needs somebody to actually work out what's wrong with her and help her.
Fourthly, it's all very well for posters to suggest that assisted living isn't that bad, but the decision to take another adult our of their own home against their wishes is never one that should be taken unilaterally or lightly. What you said about a hospital worker threatening to have her declared incompetent is quite worrying really and is not the way things should be done. No wonder your Grandma thinks everyone is out to get her!
However, if you are going to continue to care for her, it is important that you let her know exactly what kind of strain this is putting on you and your mother -for your own well-being if nothing else. Very often families skirt around the issue and acquiesce until the time comes when things fall apart. You need your Grandma's cooperation in her living at home, and I would make sure she understands this responsibility - that her actions or refusals have consequences for everyone else.
I know that events will no doubt be resolved to some extent by now. As I said above, I' m sorry for your trouble and don't envy your situation.
Best wishes and good luck.
Every case is going to be different, and even in hindsight I don't think there is anything differently that my wife reasonably could have done. Even when she came out of the hospital in early 2012, any attempt to get guardianship would probably have failed and simply alienated my wife from her grandmother. Based on my experience, here is what I would recommend:
1. Establish clearly medical power of attorney / guardianship, and make sure her wishes are clear and realistic. If she doesn't have / won't provide someone medical power of attorney and is acting like this, it's time to talk to a lawyer about someone getting guardian / conservatorship.
2. Establish - by working with her doctor directly, not just what she relays - what her care needs are. Make sure that responsibility for those needs is shared among everyone - family, friends, etc as much as possible. If she needs care that can't be provided by family / friends - and you need to be realistic about not expecting too much from any one person - hire the appropriate nursing care.
3. If she lacks the money for necessary nursing or professional care - daily, 24 hour, etc, work with local hospice and other agencies to see if you can find a solution to give her the professional care she needs. If you can't provide adequate care, you must seriously discuss and consider other options like nursing homes instead of endangering her by trying to keep status quo.
4. Understand that this is going to be difficult, and there is only so much any one person / family can do. Full time care of an elderly parent / grandparent is hard and thankless work, and it's more than a full time job. You need to make sure any plans are sustainable, or make sure it's known in advance that the plans are temporary. Expect fights - between her and everyone else, and between everyone involved.
5. Make sure that everyone in her support group is on the same page, and has realistic expectations. If your uncle on the other side of the country says 'my mother isn't going into a nursing home', he needs to put up or shut up. Discuss everything frankly and realistically separately from her to get on the same page and form a unified front.
6. Work with local social services or other resources (such as an elderly care lawyer) for advice and guidance. They have dealt with this situation before - you haven't. Even if you don't agree with them, take their recommendations or guidance into consideration.
7. You many not have the power to make the decisions. It sounds like your mom has the POA right now, or if not your mom's wishes would likely supersede yours (unless you want to fight a nasty legal battle - you don't). Support your mother and her decisions, but make sure your position as well as what you can and can't contribute is clear.
Dementia is an awful difficult thing to deal with, just remember that the person dementia brings out is not your grandmother. It's hard to have sympathy and not get angry / frustrated at times, but you have to treat an elderly person with dementia kind of like a child - they don't comprehend everything they are doing, and as someone who can comprehend you need to take the high road. It's exhausting but being frank and consistent and working with experts is the only way you can handle it.
I wish you the best of luck, and this isn't something I would wish on any family. Elderly care is truly a nightmare, and it's often something that people are utterly unprepared to navigate - and learning by experience is painful and difficult all around. Consult with experts.
My family actually managed to get my grandmother into hospice care in her own home, and we had people in her apartment with her from 7AM to 7PM (which is when she went to bed). Unfortunately, she woke up at 630AM last weekend and decided she A) wanted a glass of water from the kitchen and B ) didn't need to use her walker. Obviously she fell, and was hospitalized for X-rays. She has no breaks/fractures/dislocations, but now the hospice company is saying they won't send people anymore since it's not safe in her home anymore.
Does anyone have any experience dealing with hospice companies?
A little bit / mostly secondhand. Unfortunately, at this point there are really only two options.
One would be to get around the clock in home care. Which is very demanding if provided by family and typically unsustainable, and ridiculously expensive to have provided by a private company. Like, six figures a year expensive.
The other would be to get her into a nursing home / hospice facility that can provide around the clock care.
It's that time. She's at the point where being left alone, even at night, is neglectful. Depending on your state and their resource / asset requirements, the best bet is to get her into a nursing home of your / her choice while she can afford it, and spend down her assets until Medicaid picks up the tab for her.
When will Medicaid Pay for a Nursing Home or Assisted Living
My grandmother now has a live in caretaker 24 hours a day and seems to be doing pretty well. I've been paying this caretaker with money from my grandmother's bank account via my Power of Attorney. Today I went to the bank with my Power of Attorney forms to move money from a beneficiary account my grandmother had set up for me some years ago to the regular active bank account I use to pay her caretaker. The bank manager told me that in order to do this they needed to see my grandmother or at least get her on the phone, which isn't really an option given her health. I'm a little confused, because I thought the Power of Attorney meant I could act on my grandmother's behalf without her needing to be involved.
But yes, that is what it is. The bank should not be making any calls on this, if the power of attorney has been granted, they really have no recourse and have to follow it legally. Just make sure to remind them of that. The grandmother is not in fit mental states that they really need anything from her anyways. Not sure what they're after.
I'd probably ask them if they're willing to risk legal action against themselves for denying your requests as her agent. Then again, there are also lots of types of PoA, I'd double check that you don't have a limited scope one, like healthcare proxy or something.
If you can compensate the care provider in the current state of affairs, is that not an acceptable way of doing things moving forward?
They're common but that's for the courts to decide once an issue has been raised by someone else. Problem with bank accounts and being an agent for the PoA is if you need the money, they can't just dilly dally around, they're going to have to use other means to determine validity of the document. They can't just talk to the person, they have to talk to the issuers of the document. If they can't verify it, then they deny it, but asking to speak to the person when there's a PoA is probably just going to get them nowhere. But that's the point, even someone with dementia might not know someone has PoA over them, which could be a problem and is in no way a validation of the document itself.
"No I don't know what that is! What are you doing!" meh that's when you respond "Sorry you don't have the authority to contest my PoA, feel free to verify it, but I will need access by (X)."
It does mean that, but powers of attorneys are commonly used by scam artists who get elderly people to sign one for one advertised purpose, and then they use it to do all sorts of heinous shit.
So financial institutions at least want to talk to the person to make sure she is aware you are doing this.
we also talk about other random shit and clown upon each other
In cases of dementia, this is not helpful.
It's more "this guy has a document that gives him carte blanche access to all the funds in this other party's account, I'd like to talk to the other party who might be taken advantage of or have diminished capacity".
Getting irate about it doesn't get you anywhere. Right now it is still relatively cordial. Who knows? Bluster might work, but it pretty much only escalates things. I wouldn't threaten a lawsuit without getting a legal consult on how it will proceed, and how much grandma is going to have to be involved in the process. If you do make a threat, and they don't blink, your next step might be a strongly worded letter from an attorney (perhaps the practice that granted the PoA).
Banks can and do challenge power of attorney since they may be exposed to liability (WSJ article). Like you said it could end up a matter for the courts to decide, but if you can head that off this will be resolved quicker and won't cost a bunch in legal fees for an uncertain result.
A recent GAO study on the matter.
TL DR: Banks are trying to address fraud/scams w/r/to PoA and they may ask for additional doc, talking to whom you are providing agency, or may just outright refuse. You should really try to resolve this without it going to the courts as that will be lengthy and costly and there is no guarantee you'll win.
When I worked at a CU we would have occasions where someone where someone had a POA but it was only noted by us on a single account, even though the POA granted access to all accounts. So if the Attorney tried to access a different account they'd initially be stymied as if they were attempting to prove POA for the first time.
I wouldn't be surprised if something similar is happening here.
fuck up once and you break your thumb / if you're happy at all then you're god damn dumb
that's right we're on a fucked up cruise / God is dead but at least we have booze
bad things happen, no one knows why / the sun burns out and everyone dies
I would flat out tell them 'I've provided legal documents you are legally obligated to honor, so if you require clarification on your responsibilities under the law, I'll wait while you contact your manager or the bank's legal department.'
Keep going up the chain, as most low-level employees at the bank, even ones with specific tasks like account setup, aren't very familiar with things like POA. Escalating to a branch / regional manager or the bank's legal department should clear things up pretty quickly or at least let you know what it is they actually need.
Another option worth consideration - can you bypass them entirely by conducting the business online / through the phone? While you almost certainly want to clear up the POA issues, doing things online might take care of short-term issues.
Like, that's a few phone calls over the span of a half hour or so for confirmation.
It doesn't help that in most states the notary system is a joke.
fuck up once and you break your thumb / if you're happy at all then you're god damn dumb
that's right we're on a fucked up cruise / God is dead but at least we have booze
bad things happen, no one knows why / the sun burns out and everyone dies
They can't just go "well yeah I need to speak with the person you have PoA over" because that's going to get them nowhere in 99% of cases. PoA is usually because that person can't be trusted, or, is incapacitated.
Like I cannot think of a situation ever where it'd be worthwhile. Someone with dementia isn't going to have the wherewithal to answer a question about that. Someone who lost PoA over their own shit is going to lie. Someone who's in a coma can't come to the phone right now.
fuck up once and you break your thumb / if you're happy at all then you're god damn dumb
that's right we're on a fucked up cruise / God is dead but at least we have booze
bad things happen, no one knows why / the sun burns out and everyone dies