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My 93-year old father, who has mild-to-moderate-level dementia adamantly refuses to go into an assisted care place even though taking care of him has put a severe strain on my sister's health, her marriage and their finances. And, frankly, myself. (She travels 2 hours each way 3 x a week and I take care of him the rest of the week...temporarily...until we find another suitable live-in caregiver.) My sister has made this trip for 13 long years—first to help her ailing mother (my stepmother) until she died, then our father. Full time, non-live in caregivers hired by an agency cost a small fortune here in the SF Bay Area, so she has done this herself and, until recently, with the help of a 4-day a week live-in caregiver. She is trying to preserve his money, and the trust. Unfortunately, the caregiver, a non-working pharmacist, turned out to be mentally ill. He has both OCD and is bi--polar and was also pitting my sisters and I against each other. My father always been a proud, high brow, elitist intellectual so it's understandable that he would be depressed at losing his mental faculties. And that he would think he is “too good” to go into a place with other common “old people” who may not quite live up to his “mental acuity.” (Or so he still thinks of himself.)
We do have compassion for him, trust me. But really, he has never been a man at peace with himself. He is filled with anxiety and now that he has dementia he's gotten worse. Frankly, I think he is one man who NEEDS to be with other people in a care facility. In his case, I think he might actually improve as once he is in a group, he actually likes to talk to people...as long as he is getting enough attention. But, as I said, he is very prideful and doesn't think he needs other people—except, of course, his daughters to wait on him hand and foot. This cannot go on like this! I mean, it's not like he's enjoying his life roaming around his big house in his so-called "golden years." He is confused, aimless, unhappy, depressed and mopes around. (Not always, of course.) He never sleeps well, eats all hours of the night and repeats himself every ten seconds. Yes, his short term memory is really that bad. I remain happy and upbeat around him and treat him with as much dignity as possible. I take him on walks (he uses a walker), to the gym, on outings, read to him, etc., Nonetheless, it is very, very hard not to lose my patience and wonder why are we doing all this for a man that is living in one big self delusion? He survives emotionally by pretending he is going on long overseas trips, is going to start a big foundation, etc. It’s sad to watch his decline, of course, but it's equally as hard to watch him become so self centered. I know it's the disease (sort of...it gets confusing as he was that way before to some degree) but he doesn't care about what the family has to endure, how their families might suffer, whether there is any inheritance left...nothing. He has said so. Of course we don't want to force him to go into a home, but for everyone's sanity we may have to in the next few months. And we certainly would make sure that he goes into a good place—where he is well looked after and where we can all visit him regularly.) The thing is, he has long-term care insurance (Calpers). However, being a dreamer, he wasn't paying attention to "minor details" and mistakenly checked the wrong box on his LTH insurance application over 20 years ago. So instead of home care, he can only go into assisted care place and have it paid for. (Up to $3000 a month.)
Here's what I want to know. I understand that if he is hospitalized for any reason (which he was last month when he wouldn't wake up and lapsed into a coma), there is some sort of legal wrangling that will enable my sister (who I believe has power of attorney) to put him in a nursing home or assisted living—depending on his mental and physical state at the time. Is this correct? Chances are good that he will end up in the hospital again soon, so what kind of strategy can we legally employ...if any?
One piece of bad news that my sister just delivered (she just discovered this herself) is that it's written into my father's will that he can never be put in a care facility. Seriously?
Surely there has to be a way to override this stipulation...especially if he is a danger to himself or others? I mean how can adult children be forced to abide by a decision made when a parent may have been of "sound mind and body" when he wrote/signed the will but then later lost his mind (essentially) due to dementia? There is no way he can live on his own and his finances are being rapidly depleted through paid caregivers, etc. It's also not possible to to a reverse mortgage on his house due to a complicated, split trust situation. (His large, paid-for California house is his biggest asset.)


Thanks. :)

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I expect your sister is a) exhausted (nobody thinks too clearly in that state) and b) frustrated: she wants to do what your father really, really is happiest with, and like everybody else she's now at a loss to know what that is. And, I am sorry to say, she is on a hiding to nothing: because what he deep down wants is not to be ill, not to be frail and not to need any kind of care.

At least you're all talking, that's a good start. Don't expect it not to get emotional. Sometimes all of the available options are unattractive; you all have to work together to find the least bad one. Jeanne's advice has been great, as always. I'd only add: I wouldn't launch your father at this stage on a whole new phase of opening up to people. Let him be: how he is has worked for him for 93 years, and he's entitled to his pride. Fortunately the kind of AL you have in mind will know that - which might also cheer him up about the prospect!
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You are dead on about my sister. When you said, "Is her identity so closely linked to her long-suffering care giving role that she fears to give it up, even though she wants to?" that hit the proverbial nail on the head. She is very conflicted, that much is sure. I get that...she is overly bonded to our father in a way that is not healthy...especially if it almost cost her her marriage and their business. That can never be right. However, two points you made needs to be corrected. One, as I said in my original post, my father did not MEAN to sign up for a long-term care facility. He checked the wrong box on his LTI application some 15 years ago (or longer). In other words it was never his desire to be taken care outside of his home. But he didn't pay attention and screwed up. So now he has $3,000 available to him for a facility (even though they cost $5k a month and up) and nothing for home care. So you can see that my sister is both emotionally and financially motivated for him to move to a facility. And frankly, I think it would be good for him. He is has been a elitist, non-joiner, non-community person all his life and it would do him a world of good in his remaining years to be around people...to realize he does need people other than his family. There are many assisted living places that "house' educated people (some of the ones here have retired Stanford professors, etc) that he would consider "worthy" to be around—even though ironically he would have little to contribute to all the heady conversations owing to his mental state. But it's more the IDEA of being around such people more than the reality of how that would really play out. In short, it's pride.

Anyway, as you said, I need to stop trying to figure all this out and focus on my own life...getting healthy in areas—spiritually, emotionally and physically—that have long been neglected. Part of that may or may not involve helping take care of my father a little longer, but I'm not going to be over invested in this whole thing emotionally as I have been. I release all the characters in this drama to God ...including myself! Joy and peace must be maintained at all costs. Or, as King David said, "I do not involve myself in complicated matters." :)

Thanks all for you wisdom, help and guidance. Very much appreciated. This has been a great resource for me during these challenging times.
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If your father goes into a care center he will die. If he stays at home he will die. Hey, he's 93 years old! So please pull that consideration off the table. Try to see that he gets the best care he can have until the inevitable happens. We are all going to die. Give him assurances of being there for him, never abandoning him, etc. Try to address his fears, but obviously you can't prevent death no matter what decisions you make.

Father took out insurance for a long-term care facility, should it ever be needed. He signed an advance directive while in his right mind, accepting that a care center might be needed. Those both seem more indicative to me of his intentions than anything he might say now that dementia has progressed.

I don't know why the other sister is being what seems to me to be weird about this topic. A certain amount of guilt feelings are inevitable in caregiving. Could she be so wrapped up in guilt she thinks she has to defend him against being placed in care center? Is her identity so closely linked to her long-suffering caregiving role that she fears to give it up, even though she wants to? Is it possible that after all these years of sacrificing she doesn't want to see the estate dwindle by paying for a very nice care center? I guess there is not much point in trying to analyze her motives. If you can talk to her directly, maybe you can get a better sense of what is going on, and help her get past it.

Again, each of you sisters has control over your own behavior. You can give notice that you cannot continue to help with Dad, except by finding him in-home or care center help. Your sister can continue to insist on putting herself at risk to do it alone, or can also decide to end this hands-on role. I don't know where the younger sister fits in, but she controls her behavior, too.

I hope you can all work toward what is necessary and best for Father and for all of you, without damage to your relationships with each other.

Best wishes to you all.
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Wow, I knew that siblings can often have quarrels and rifts when a parent needs care (us sisters have had our share) but I didn't know it was so "rare" to work together to find solutions for a parent's care as you said, Eyerishlass.

Having said that...it seems there is already a big rift brewing between at least two sisters. Why? Because that so-called "will" my sister was referring to is actually an advanced directive, yet here's the rub: it's an OLD advance directive that no one in the family knew even existed. (I think it was somehow hidden within his will). Because of the lack of such knowledge, about six years ago, my younger sister drafted, and had my father sign (of his own free will), an advanced directive. This newer advanced directive allows for care in a facility (no more than 3 months if "extraordinary means" have to be employed); however, the OLD A.D. stipulated that my father had to be kept at home—no matter what his mental or physical state. I told my sister (not younger one) that legally the newer A.D. supersedes the older one (I think). After all, my father signed it before he had full-blown dementia and it was certainly not under duress. He didn't even know he had another A.D. so it couldn't have been very important to him!

It's weird though. Here is my sister completely burnt out taking care of my father (and before that her mother) for 13 years, and even had a fight with him over his refusal to go into a care facility, but then turned around and said to me, "Well the NEW directive is what your sister [our younger] wanted...not what he wanted." Since I'm quite sure that my younger sister did not coerce or force my father to sign this newer A.D., I have no idea of why my other sister said this—especially since she herself has been trying various way to get him to go to a care facility. She is tired of giving up her life for a father who couldn't care less about anyone but himself and is "above it all." She is trying to save her marriage and her business. So why all of a sudden is she worried about what he might have wanted 20 or so years ago? If he signed a new A.D. willingly 6 years ago when he was in his right mind (more or less...as I said he has never been completely grounded in reality), then surely that is what he must have wanted. If he says something different now it's because he is has dementia and is understandably frightened. He fears that once he goes into "a home" he will die. Maybe he will. Or maybe he won't. How can anyone with dementia make any kind of rational decision about anything? It takes him 5 minutes to decide what kind of sandwich he wants or what shirt to wear and within that 5 minutes he will have repeated himself—on the same subject—at least 10 times.

It's a crazy situation—and yet I have seen a lot worse posted on this forum. Is this what getting old is like in America? Because if this is it, then I'm going to pray that I check out early...thereby ensuring my children won't have to go through all this.
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A hospital situation is always a great springboard for the possibility of an alternative living arrangement. I know people who wait around for their loved one to need the ER just to get them placed in an ALF or nursing home (although transfer to a NH is something that happens immediately after hospitalization usually while an ALF is more of a process).

And your dad can make all the stipulations he wants as long as he has the money for it but once his dementia progresses to a point (and who really knows where that point is?) he doesn't have a say-so and you and your sister will have the make the decisions and arrangements.

I'm glad to know that you and your sibling are working together. That's rare.
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All helpful advice, thanks so much. I will pass this on to my sister. I was wondering too about the will thing as he would be gone and clearly "long-term care" would not be an issue then. Confusing. I need my sister to clarify this.
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You need to consult an elder law attorney for professional advice. Also, consult with his physician.

You and your sister deserve to have a life as well.
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A will says what happens after a person dies. And he certainly won't be in a care center after he dies! So I don't understand what the will has to do with anything. Do you mean it specifies that who gets his estate will be different depending on whether he was in a care center? Frankly, unless his estate is extremely large, I wouldn't worry about who inherits. His care is going to eat significantly into what is left.

He bought and has been paying for a long-term-care policy. Certainly when he was in his right mind he realized that a care center was a possibility.

You are your sister can always control your own behavior, regardless of your father's cooperation or lack of it. You can decline being at your father's beck and call (whatever a beck is?) and refuse to take the role of his primary caregiver. If you refuse to do this and you stick to that decision, then he will have to make other arrangements -- or let you make other arrangements. But why should he if you are giving him what he wants?

If he can afford it, Dad should have all the in-home care he wants to hire. He is under no obligation to leave anyone an inheritance. Or he could spend his money plus use the insurance for a deluxe ALF. He may only live another 6 months or he may live another 10 years. Who knows? But you need only be his primary caregivers for that time if you choose to be.
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He has to be declared incompetent by at least two different MD's preferably his Primary physician and a Neurologist or Psychiatrist. At that point the POA kicks in and sister can place him.
The clause in the Will sounds a bit bizarre, especially if he bought long term care insurance. Read it yourself and see what it actually says.
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