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Husband with Parkinsons, I am caregiver, he needs help with direction, meds, meal preparation, appts etc. He can not function independently.


Local daughter is POA, financial and medical if something happens to both of us. Son in another state is backup.


Our daughter has recently become detached. My concern is if something happened to me she would just put him in a nursing home, and not make sure he was getting good, adequate care.


Oldest daughter also out of state, who is very involved via phone and visits when she can, feels if something happened to me all of our children should be involved in care for their Dad.


Local daughter has helped with some financial things, but seems disinterested in hearing about her father, and barely speaks with him. She is going through events in her life, empty nest, husband died 7 years ago, and now a new boyfriend. Initially when we moved to be closer to her she was very involved, and helpful, which is why we made her POA, and now I am wondering if we have made a mistake. I try to be independent and do not pester her or ask for help unless I need to. I have decided I have to do this, but it has been difficult to understand the standoffish-ness. Majority of our communication is by text, so as a result many things are lost in the communication, & she doesn't follow through like she used to.

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To answer your question if you could add on to your will and advanced directive, IMHO you may want to let an elder attorney take care of that.
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You have a daughter that phones often and visits “when she can”. I am thinking she is unaware of what type of care your husband needs as she doesn’t see it.
I would not be too quick to change the current situation. It will be hard to move your husband nearer to the oldest daughter - switching doctors who don’t know your husband as well as they do now, the physical toll it would take on him to move, amongst other things.
Not to be rude but life is for the living. Your local daughter is coping with losing her husband & now may have found a little happiness with a new beau. All your kids will most likely opt to place your husband (their father) in a care center if you pass. No one is going to care for him as well as you will. Yet it appears none of your kids are going to ignore his care either if you pass before him.
I say give it a rest. Yes have that conversation with your three children and discuss what you want regarding your husband’s care. Just because none of them are willing to drop everything when you want them to pay attention and now when one daughter - your original choice - may have found some happiness, you’re going to make a change to another daughter who lives farther away because your original choice isn’t as involved as you would like.
You don’t have an issue with placing your husband (their father) in a care facility when and if you are incapacitated. That’s what is going to happen with any of your offspring you’ve said. Why rock the boat? You are putting one child against the other simply because you aren’t getting the attention you once did.
Spend your time finding a care center that meets your standards and specify this in your will. Make financial arrangements to make it so.
Have that conversation with your children at an in person or Skype/FaceTime meeting with all at one time & let them know how you feel and give them an opportunity to be involved.
I’m sure you know that Parkinson’s is a progressive disease - make sure your children know this as well & relay your fears about care to them. They can’t read your mind. Your children sound like a caring & reasonable family unit and you should be proud of that.
I think things will work out fine and am not sure taking that step to change your original choice may be warranted.
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Hubby can be moved to be closer to the person who will do best to care for him - pick the best person not the closest & write out that all his expenses for the move are to be paid by your estate - talk to them individually to see who will best follow your wishes & deal with hubby in best way & follow your/his wishes

Where do you live as that can change things?
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ALWAYS check with an attorney from the state in which the POA will be enforced. Different states, different laws.
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I am sorry to here what you are going thru. first I would say if you fell uncomfortable with your daughter as POA you can change that in your will. If something should happen to you before your husband you need to know that he is taken care of in the manor that you feel and know is best for him. No one knows him better than you.
It sounds as if your daughter is going thru a new stage of her life. you mentioned her husbands death, than a new boyfriend, I think she is attempting to adjust to change which to some people is very difficult. Before she was alone and used her time to help and care for you and father but now their is a new guy in town and she is consintrating on a future with him.
My father died not that long ago and my mom died three weeks later. My father had left in his will what he would like me to do for my mom. I have four other sisters who live local but have no interest in helping my parents. I did the best I could as to dads wishes for mom.
My husband also has parkinsons disease. He is not totally unfunctionable as of yet. I understand the work and care needed for them. Its hard.
All you can do is explain to the children what you would like when you are gone. you can also add it to your will. There is no way to make them do anything for dad the way you want. You can only do your best and hope that they abide by your wishes.
good luck.
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You cannot change a POA in a will. A POA is about what happens when the person making the appointment is alive, a will is about what happens after death. A will can ask or suggest that some particular thing will be done, but that's usually all - making bequests conditional on someone doing certain actions is difficult and definitely needs a lawyer to draft it. The correct statement above is 'all you can do is explain', whether it is in a will or in a separate letter.
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So it would seem whether you realize it or not, that all the burdens and unloading land on your daughter. Perhaps she is burned out from your "trying not to pester her." How many texts do you send and how often. It is maddening to have your day or night interrupted by another message from someone you are expected to be on call for 24/7. Let her know your intentions and concerns, and if she has no objections then go ahead for your own peace of mind but make sure you have an attorney do it so it is not questionable at a later point.
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We were told we could "add on" to our trust as we saw fit--but something as big as this, I would make the time to talk with an attorney.

You have a very real and serious concern. And putting this all on your daughter may be too much for her.

Also, we need to be aware that as your lives change, so do your children's--one who seemed the best choice for executor or POA has some life changing events and suddenly, they AREN'T the best choice.

Also, the relationship within a family shift and change, constantly. For example, my kids assume I will stay healthy and I will be caring for their dad until he passes. I've asked them what if I die first and they have a whole different plan.
Dad will go straight into a SNF, no matter how old he is. They simply cannot care for him. They've seen what I have gone through and he's basically very healthy---but they have watched me do the 24/7 waaaay too many times to willingly sign on for it. He's a terrible patient at best and impossible at worst.

So---my trust reflects that. Actually, it's a small (not funny) joke. They cannot slam their dad into a home, but nobody will step up and care for him. For me? Yep, no problem, for him? No, he has outlived their willingness to care for him already.
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How long has the new boyfriend been on the scene? I don't mean to be cynical about the impact of daughter's new relationship, but if this is a recent development it could just be a matter of waiting for the novelty and excitement to wear off. Have you met him? Do you like him?

When it comes to contingency planning for your husband, you can express wishes but you can't bind future POAs to a particular course of action. I agree with everyone's view that it is crucial that all three children feel included and are free to contribute so that they can support one another.

I feel two things (on current information at least): one, that you shouldn't overreact to what could be a temporary blip in your daughter's normally concerned and helpful attitude; and two, that you must keep talking - not in a critical "what's wrong with you?" way, just in a 'talk to me!' way. If your daughter has found a "keeper" that could be a wonderful transformation in her prospects, and I'm sure you would want that for her, but that doesn't have to mean she's stopped caring just as much about you and her father. Be careful not to let it look like there's any kind of competition for her time and attention.

And two questions: what kind of support do you have in taking good care of yourself?

How was Christmas?
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I became POA for my quadriplegic brother-in-law when my sister died unexpectedly before he did, so I understand being in that situation. While I was willing to take on the responsibility, and their affairs were very much in order, I was not as well-prepared as I would have liked.
I believe the suggestion someone made about a special-needs trust would be a great idea for you. You could name the daughter you think will do the best job as trustee. I think you could include specifics about his care, such as a preferred facility, etc.
My deficiencies in caring for my BIL mainly arose from my inexperience in understanding his specific needs and mental state, sudden need for taking over financial assets that I was unfamiliar with, and lack of knowledge about where to find help. If you can prepare your representative in these areas, it will be very helpful if the need arises.
This fell on me when I would have been grieving the loss of my last sibling, so you need to consider that whoever gets the responsibility will be able to set her grief at losing you aside for a while in order to immediately care for him, especially since you have him at home.
Perhaps you should be finding a home health care agency now to help you so they could be counted on to provide 24/7 if needed. Or select a facility where he could go in case of emergency. This is just good planning in case you become suddenly disabled yourself.

The above suggestions are in addition to POAs, advance directives, living wills, etc., which are vital. It was very helpful to me that they had an excellent elder law attorney who had these ducks in a row and a compassionate, helpful financial manager.

I think you need a sit-down with your kids, individually or together, to open the "what if" discussion. Find out exactly what each of them feels willing and competent to do to help, then go from there. Stop wondering if this one or that one will do this or that, and ask them. Give them all the specifics you can about what Dad would need, and see if they feel able to provide it. If you dump responsibility on someone who is not willing or able to provide it, you can't expect things to go well.

Make a New Year's resolution to do this by January 5. Get prayed up in advance.
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I’m sorry you are hurt by your local daughter’s standoffishness, and I admire the selflessness you’ve shown caring for your husband.

As others have said, it would be a good idea to take care of these items now. While older daughter believes all children should take care of their father in the event of your death, that rarely happens and may be impossible given the geographic disparity of your children. Similarly, ‘help’ is in the eyes of the beholder, and it sounds like you could use help now.

As painful or difficult as it may be, you should talk to all children, preferably together, to get everyone’s input before you make PoA changes. Perhaps older daughter is comfortable with ‘visiting when she can’ but not up to the responsibility of regular visits, paperwork, and follow-through of moving husband to her area. Maybe younger daughter was burned out.

In my area, there’s a long wait list for the good facilities. Who would take care of him during this transition? You don’t want to leave this to chance.

Putting my my mom into a memory care center was the hardest thing I’ve ever done, so I understand your reluctance. But it brought me closer to my 3 sisters, and everyone has become involved in mom’s care—even 2 sisters who are not local. We’ve become “daughters” again, rather than caretakers. Give yourself that gift now.

Best of luck!
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You should set up a "Special Needs Trust" the special needs trust would then be used for his care. The house and all the assets could be placed in that trust to it would all go to his care. And you could select anyone you choose to manage that trust.
The dementia might be Lewy Body Dementia and it is important for that to be ruled out as many medications used for many other people can not be used with Lewy Body. And Lewy Body dementia patients can become violent so this might be a concern as the dementia progresses.
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Have you considered choosing the facility yourself? It might be best to move closer to the daughter who would be a better advocate and choose a facility near her.
Your elder daughter is right, it would be best if all children participated equally in the care of their parents. But that rarely happens. Take charge of the planning yourself.
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Yes, you need to renew the POA and name someone that will carry out your wishes. A will is not the proper document.
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It doesn't sound as if the will needs to be changed. The will is about the disposition of assets after death, not about care before death. Wills can't be changed by a 'simple form', and if you don't really understand this, it would be a very bad idea to try DIY. If you are trying to change who makes the decisions after you die, then the only way your own will could be involved is by appointing a different executor, who could control your personal assets (ie not assets that are joint with DH), and so might have influence over house sale and/or the financing of care options if your DH is still alive.

It does sound as though you need to scrap your existing POA and make a new one that appoints the best person now. That POA will apply if you are still alive. If your husband is still competent to make another POA himself, then that should be done too. However 'if something happens to both of us' and the something is death, then no POA will apply.

If this is all a bit confusing, go back to the lawyer. I hope it all works out.
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Are you saying that you expect your kids to provide 24/7 care for husband. Not a facility?
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Peacefulgal Dec 2018
No, I do not expect that, I just want him to be put in a good decent place and monitored for the care given, not daily , but regularly. Local daughter doesn't seem inclined to do that.
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Is husband still cognitive? If so, revoke daughters POA and give it to the daughter who you know will care for Dad. You can go to the lawyer who drew up your wills and add a codicil.
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