I'm trying to support my stepmother (full-time caregiver to my father, who was diagnosed w/ALZ about 4 years ago). I live several states away, have a full-time job, etc. I do my best to help where I can (have him come to stay with me for weeks at a time, go to stay with them for weeks at a time so she can get out or travel/vacation, etc.). As anticipated, she is coming to the end of her rope being the full-time care giver for father, but we are now having differences of opinion on next steps for my Dad.
A little background: Dad is 72, she is a few years younger. Physically - he is the picture of health (sans prostate CA a few years back). He was diagnosed w/ALZ about 4 years ago. He was a very successful, high control, high intelligence, high expectations kind of guy w/his kids, his employees, etc. He could be a PITA pre-ALZ & those behaviors have been amplified post-ALZ. For 25+ years she has professed, "I am not a caregiver." She never had kids, etc. (neither have I - no judgement there & kudo's for admitting to her limitations). She also had a very successful career, is fiercely intelligent, motivated & funny. They were both settling into their retirement years (travel, etc.) to enjoy what they have told me is their hard earned "more $ than they could spend in a lifetime." Amazing! Then life was de-railed by Dad's ALZ Dx. :( Understandably, she is devastated, disappointed, frustrated, lonely & depressed. She has been robbed of their intimacy, conversation, joy, etc. She's told me repeatedly she married my Dad, "for his d**k, his drive & his brains and now no longer has any of those things." She is no longer in love with him. She even wonders (out loud) if she ever should have married him in the first place. It's been devastating for everyone. We are all doing our best to cope. I believe the person who is suffering the most is my father. He still knows enough to know that his mind is deteriorating. He still knows all of us & is still that very proud, high-control guy who recognizes that others are now controlling his life.
They've had in-home assistance 12 hours/week (4hrs x 3d) for a year or so now. Dad does not like the in-home caregiver (b/c he is "not very bright."), but he tolerates him & goes along with it most of the time. Dad is growing increasingly agitated (going to seek meds to help with this). She & I have agreed on most things along the way. They promised each other Dad would stay at home as long as they were both safe. There was never a doubt we would come to a time where she said, "I can't care for him anymore," but I thought she would honor her commitment to keep him at home as long as possible. She no longer wants to do this. She wants to put him in a facility. I oppose. My opinion is that he deserves to be at home. He worked & saved a lifetime to live & stay home until the end of his life. She promised to keep him there. His behaviors are not impacting their safety & there are many other options (remember - $$ is not a limitation). The issue has become her privacy & need to have alone time. I'll admit that the focus of our conversations over the past couple of years have been drifting toward what is best for her (vs. what' s best for Dad). My empathy for both of them is enormous, but I'm growing frustrated that she will not consider more in-home care (inconvenient for her & an invasion of her privacy). Most can't afford that option - they can. She flat out refuses. Dad has "muscle-memory" at home. People w/ALZ need consistency. Why should he be denied the opportunity to stay home at this point b/c she is unwilling to be flexible? He is not ready for MC & is too far advanced for ALF. Our last conversation was several weeks ago. I disagreed with her about this plan, she hung up on me & hasn't spoken to me since. She has POA, so will be the ultimate decision maker. What are my father's rights at this point? I'm so sad.
That said, why not move dad in to YOUR home? Or do what Nokonoko suggests and rent a luxury oceanfront home for your father with round-the-clock caregivers and a chef to cook for him, since money is no object? That would give him the best possible lifestyle and let your stepmother off the hook entirely for his care. "In home care" doesn't have to mean HIS home; it can mean an even nicer home with better accommodations that will be able to handle his needs as they become greater and greater as the AD advances. Wheelchair accessible, ADA friendly, etc.
Do something that takes BOTH of your folks best interests into consideration and not just your dad's. Otherwise, your SM has POA and can 'put' him wherever she wants to, with or without your approval. Placement is often the best option for all concerned, so don't be surprised if she chooses to go that route. If I were you, I'd work WITH her instead of against her on this matter. After being his wife for all these years, I imagine she deserves your respect.
Actually she's described the wrong issue, as many people do because they don't spot it until afterwards: it isn't the loss of privacy as such, it's the being 24/7 on duty.
You can have an entire staff in the house, doing the chores and the personal care and the cooking and the lawn come to that, but it's still YOU in charge. You never get a day or a night off. You are always on alert. That's why it takes three days of your charge's being in respite care to stop waking at two hour intervals throughout the night, and under this continuous strain primary caregivers either snap altogether or get seriously bent out of shape.
it is not safe Mentally for her to continue caring for him.
Safety is not just physical safety.
The options are.
Full time in home caregivers.
Memory Care placement.
If the house is set up to be safe for him as he declines that is great. If not can changes be made now?
Is dad a Veteran? If so the VA might have some help available. Contact the local Veterans Assistance Commission. Due to recent changes it is possible that s-mom can get paid for caring for dad. And if he is a Veteran depending on where and when he served there might be a little help available or a LOT.
would your dad go to Adult Day Care? That would give s-mom a break a few days a week.
Your dad's "rights" are limited at this point. If he has been declared incompetent he really has no choice in the matter.
You on the other hand, if you wish to fight this could petition for Guardianship but this would be difficult and messy. And you would then have to care for him. If you can't do so and would have to place him in Memory Care because you could not care for him 24/7 you are then in the same boat s-mom is now.
Answers to a few of your questions:
Full time care-givers in the home are an option (but she will not allow it)
She is pursuing ALF & MC placement
He is safe in the house now and, yes, further adjustments could be made w/disease progression (though it doesn't seem as though he will be there b/c she doesn't want to to do that)
He is not a veteran. Money is not an issue, so the family doesn't need to worry about being paid for care-giving (I didn't know this was an option though and will be pay forward that info to others).
I did forget to mention that Dad is going to Adult Day Care 3d/week, in addition to the in-home care-giver 12 hours per week (most of which involves being out of the house @ movies, errands, etc.).
I would bring my dad to me (to live here or ALF/MC when necessary, etc.), but what i want most for him is to be able to be in HIS home that he worked so hard on, on this beautiful lake that makes him smile and calms him every day. That's all he ever wanted. He asked (when he had MCI) to stay there until he didn't know where he was anymore. He could be there with round-the-clock care. It's just the unwillingness to even try to allow that to happen that is breaking my heart.
Your Dad is losing his health & home.
You are losing the Dad you love.
Step-Mom already lost the man she married.
It's also about the adjustments that are required.
You say your Dad is in great physical health. But he has Alzheimer's - a degenerative progressive brain disease that will effect his memory, personality, cognition, balance, swallowing, speech & much more.
"She wants to put him in a facility. I oppose. My opinion is that he deserves to be at home".
You want him to stay at home *as long as possible*. I get that. It is nobel & kind.
But as you don't live with him in his home so that is not within your control.
You want to support your Step-Mom to keep him at home longer. I get that too. But she no longer wants that or can do that.
If you have enduring POA covering lifestyle decisions for Dad you have the right to arrange his care.
But even then, you don't have the right to insist anyone (wife or not) BE his hands-on caregiver. Neither do you have the right to insist his wife be the manager or coordinator of home aides.
Step-Mom has the right to leave, stay married or divorce as she wishes.
Dad, loses his 'rights' to stay in his home if he cannot either 1. Self care or 2. Arrange such help for self care. This is a sad but true fact. Think it through.. if he DID have the right to insist he stay in his home - how would this be accomplished? To follow on from that - if YOU had the right to insist Dad stayed in his home - how could that work?
At present that would entail enslaving your Step-Mom to be his caregiver - this would disregard her human rights for freedom.
I believe what you are talking about is a *Social Contract*. Where Step-Mom made a social contract with you to keep Dad at home for *as long as safe*. You & she differ to what the end of that social contract looks like. It was not set in law. You wish to keep things the same - she wishes to change. Your wishes do not weigh more than hers.
Another way to look at is this: she could break her leg, hip or have stroke. Could you insist she keep caregiving then?
I would suggest finding professional support for your family. Maybe a social worker experienced in elder care & transitions into care.
I hope with the right support you can find peace & acceptance. Work WITH your Step-Mom if you can. As being on opposing sides will not help Dad. And that's the MAIN point isn't it? His care?
You say that your father is too good for MC but beyond ALF. That honestly is saying he needs memory care.
Some facilities had a kind of cross between, and my brother's ex was lucky enough to be in one of the best. Tho confined to WC and with some Alcoholic encepholopathy he would wander were he in ALF, mostly going out for spirits. So he is in a locked cottage on a level three care. And with others who are a match. He is very happy there.
I hope that your Dad's wife will go ahead with placement. Just my personal opinion. Best out to you. Your Father doesn't have rights now that the POA is set in place and because of the dementia must act for him in his best safest care, and to be honest, for herSELF as well.
One thing to consider: as you have stated they can afford an excellent facility. He can go to one and get so much more social exposure, opportunities for activities, outings, events, etc. At home he is stuck with the same person all day, every day (or if there are 2 or 3 caregivers rotating) and they don't always keep their patients busy or occupied. This is called a sterile environment.
I'm so sorry for your vibrant father's diagnosis. Please give a little more grace to your step-mom because ALL people who make *that* promise (to never put people in a facility) can never fully imagine what they are agreeing to. Just read some of the other posts on this forum under Burnout. I think you are romanticizing how it will go for your dad's care in the home. It won't be perfect anywhere he goes. Please be flexible and consider some creative solutions and understand that your stepmom cannot be indentured to care for your father. She didn't even raise children so maybe she is seeing her limitations in terms of managing your father and his increasing neediness. May you gain wisdom and peace in your heart on this journey with them.
I actually found this website b/c i was looking for forums about caregiver burnout & did read those threads thoroughly. It's crystal clear how overwhelmed, devastated, exhausted (physically/emotionally) all of the post-ers are. Fortunately, Dad is definitely not in a sterile environment (thanks to my stepmother who has arranged all of this - she has done a great job keeping him in activities...doing everything she does everyday). He goes to Adult Day Care 3d/week, his 12hr/week caregiver works in the yard with him, takes him to work out at the gym, to the movies, etc. He goes to poker, book club, hiking, etc. I would actually argue that my dad is exhausted from being so busy. Obviously, this is still not enough to give her the time she needs to herself. I actually think he would enjoy having time to sit & watch Tv for hours in his room while someone was just on stand-by in another room.
That's probably a very appropriate statement about "romanticizing" Dad's care at home. But with limitless resources for support - it seems possible that he could be where he wants to be while he knows where he is, no? Is it not even worth a try? I will continue to work very hard at giving more grace to Dad's wife, to gain wisdom and find peace in my heart.
Take this part: 'There was never a doubt we would come to a time where she said, "I can't care for him anymore," but I thought she would honor her commitment to keep him at home as long as possible. She no longer wants to do this. She wants to put him in a facility. I oppose. My opinion is that he deserves to be at home. He worked & saved a lifetime to live & stay home until the end of his life.'
You segue from agreeing that there will come a point where it is not possible for your stepmother to sustain caring for your father at home, to a decided goal of keeping him at home up until the end of his life.
You want/expect her, believe she has made a promise to your father, to fight to the bitter end, but you don't WANT it to come to the bitter end. Nobody wants that. And your father certainly doesn't deserve things to come to such a pass.
So. How bad do things have to get, how far does she have to have fallen out of love with him, for it to be clearly unsustainable?
And then, what is the virtue of allowing the situation to come to this point? What's the benefit to your father?
It is usually better in life to jump before you are pushed. It is better to walk into residential care than to be wheeled in. You say he isn't ready for memory care, but does "ready" have to mean past the point where his personality is recognizable and he is capable of expressing his feelings and preferences?
None of us will underestimate how difficult this choice is, and how heartbreaking his decline is for you. But a) you're not the one living with him and b) in this one particular case, loth though I normally am to challenge someone's opinion, your opinion is too narrowly based.
Have they got as far as identifying possible facilities? Have you been to see them?
His rights: he has the right to have his previously expressed wishes and his current preferences taken into account, and they should be at the centre of any care plan. But "I want to stay at home" isn't as clear-cut an option as it looks. What about "staying at home" is it that the person wants? Break it down, and it might comprise:
familiar surroundings
autonomy
privacy
the view from his armchair
his books
his own bed
his habitual routine
etc.
... and quite a lot of the contents, as you will see, can be kept up in residential care settings. This is only an example of the complex negotiation it takes to align a person's wishes - usually, inevitably, made in ignorance of the daily realities they're about - with the practical possibilities available (that won't leave a trail of wreckage).
Do not take an adversarial approach to this situation. If your stepmother won't take your calls, write her a letter and offer support for her decisions. You will be better able to be your father's advocate if you are on good terms with her.
He'd get far better care in a place where there are plenty of caregivers to attend to his needs and stimulate him than he would at home with an angry and exhausted wife and "not too bright" in-home helpers. You might be surprised to find out what sorts of people are there in memory care. My mother's place had retired doctors, dentists, and a neuroscientist who's lived there for several years and still reads books all days. He's as content as can be.
Not everyone in memory care is staring off into space doing nothing or playing bingo, but Dad's situation isn't going to improve and your stepmother's indicated that she's done. Being supportive means accepting her decision, and if you don't accept it, then be prepared to become his caregiver yourself.
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