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Helpforlife Asked May 2015

Am I naive or can I NOT expect to be treated with a modicum of respect for my contribution to my Dad and Stepmom's ability to stay out of AL?

Not only do I NOT get any respect, I also am criticized, lectured to and yelled at for a myriad of things I can do nothing about! I have DPOA over my Dad's healthcare, as well as Trustee of his Trust. My brother is DPOA over financials. I always involve my stepmother in decisions, but in the end, it is what a) keeps Daddy happy (meds, no fear porn mail, validation therapy, etc), and b) whatever keeps him in his own home. His wish is b and mine is a & b! She is on board most of the time, but lately, she is losing it a little more and is becoming more difficult. Her children are aware and VERY supportive. They cringe just having to deal with her in general! None of the five wish to step up and help. I don't blame them!

anonymous281963 May 2015
In what way are her children aware and very supportive? Supportive of you? How can that be if none of the five wish to step up and help? Help their mom? Help you with some respite care? Maybe if they were really supportive, you wouldn't seem so overwhelmed. I will check back with your threads, because when I leave this site, I think of how you need help and the difficult position you are in, just now.

anonymous281963 May 2015
Forgive me for using the older terminology of "patients", but this sounds to me as if you have two patients here, and that one or both requires more home health care than a family member can provide reasonably and safely. I also am trying to understand that you may have already made an accurate assessment of the needs here, however no one has listened (not wife's family) (not brother?) and it is possible that you are not only overwhelmed, but panicked.
Whether this is accurate or not, my comments may help someone else, so here goes:
If you do not have caregiving training or medical training you will understandably not know some things, and it could be more dangerous what you don't know than what you are already aware of. My concerns for you and your parent are the prevention and management of aggression, and learning how to de-escalate. Google an article online, or direct to academia.edu, an article by Brendon Stubbs, Prevention and Management of Aggression. If you briefly peruse this article you will be able to more fully understand if you will be able to proceed, or call in help. One cannot become an expert overnight, but at the very least, you should be able to be safe and have your patient safe. If you do not have medical training, the advice may be "Do not try this at home". Next, I agree to consult a geriatric care specialist (a consultant to come to the home). It may be that one or both patients will not qualify for just assisted living, and may be needing more care than what AL provides. You were right to sound the alarm early, because you are there dealing with this. I too, have found the non-caregiving family uncooperative or suffering from bystander apathy in most cases. They will not accept being informed about the care needs from you, and that is a real shame because you are the one who cares! Get more information, call in help. Be safe, no need to panic, this is all do-able. Do you have any friends, friends of the family who could stop by as a visitor/witness?
I know people are going to say, what is she talking about; but if that is anyone, just take what is helpful and ignore the rest. I could have mixed up several questions into one, I hope not, but this caregiver needs help.

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jeannegibbs May 2015
About the money: Dad can afford a better care center than StepMom can. So they separate. Nope. That is not how it works. For better or for worse, in sickness and in health, remember? The pre-nups are about what happens to the money when they die. It was very considerate of them to look after their children's interest this way. Good for them!

But the fact is, very few middle class or working class or the 99% class have any kind of material legacy to hand down to the next generation. We are living so much longer, we are encountering so much more expensive care issues, that few of us who make it past 75 have enough money for our own care, let alone to leave something for our children. This is very disappointing and very sad. But it is reality.

The money your father and his wife have now will need to be used for their care while they are alive. For their care together, I might add. They are married. And IF there is any money left over, when they die what is left can be disbursed to their children according to the pre-nup agreement.

I hope this does not sound like criticism. I know you are not taking care of your father for the sake of your inheritance. Nobody in their right mind would do that. You love him and want the best for him. But you do have to face the financial reality. Their continuing care, whether they are together or apart, may take all the money they have, together and separately.

JoAnn29 May 2015
Just assuming here but I'm reading into it that this woman didn't raise u? I really think her children should step up to the plate. Tell them she is getting too much for you. I saw this first hand and my daughter says it happens where she works. Even if they are together in an Alzheimers unit, he will forget she is his wife and visa versa. My daughter has a couple who think they are married. Both have significant others who visit. We walked in on my GFs father who was kissing another woman. The woman thought he was her husband. What I'm saying is they may not want to be together at one point because they won't know each other as husband and wife.

twopupsmom May 2015
They are married to each other, if both have dementia issues then they would both go to assisted living, you cannot Un- marry them. They will live in AL together until all their assets are exhausted. What would you have done to her if you put your dad in AL? Remember that he loves her very much or they would not be together nor married, she is still his responsibility to care for, for better or for worse, in sickness etc. A pre nup if fine for two healthy wealthy people, this is not the case here, I'm afraid in the end there is no trust for you, no home, not with both having dementia, AL will be short term as they both decline and need Nursing Home. If all of their money goes for the AL, then you can apply for Medicaide for their care. What is your brothers feelings about separating them. You need to do the right thing, not what will help you end up with your fare share out if this. As to prenup it's what is in between the beginning agreement and death as to what's shared community property. Surely they both have income, she has a rental, he must have a continuing retirement and both have Social Security, that's what is to be used for AL. As they decline then it's nursing home for both, it's the ones on top that win, the NH, Medicaid takes everything, including insurance policies. You certainly should be commended on giving up your life to move in and help your Step Mother take care of your Dad, most of us have no help from children from either side, his or hers, so don't fret about trusts, Step Mother not being your responsibility etc. Her children are correct, she will go with him, and their combined income will take care of them until it's gone. Have compassion, it is not their fault they are sick. Best of luck to you.

Helpforlife May 2015
Thank you for all the questions and suggestions! This thread is broken, because there are several other people posting, but they don't show up. Its fine with me, because some of them are quite nasty! I am relieved to see some real support here!

I have made stepmom my ally up until recently. She has had some health problems, and her alz is getting worse. I "signed up" for Dad's care, but taking on two alz patients? No WAY! I can't do it all. I have been in contact with her oldest daughter and they have no plan for her, except that she shall follow Daddy into assisted living. This is scary, because he isn't paying for both of them. He can afford a better place than she can, but there may not be enough money to take care of him. That is the hardest part of this whole thing is the lack of ability to plan for the next xx years! How can I plan, when I have no idea how long he can stay in his home?

They have a prenup. It says nothing about incapacitation, but it does say that they both come into the marriage with a list of assets and they are to be kept separate at death. Its clear, to me anyway, that his intention was not to pay for her care as well.

twopupsmom May 2015
Do you live with them? Do you have a full time job? No would be the answer to the first question, maybe step mom feels you are too invasive to their lives. The answer to the second hopefully is yes. You really need outside activit to keep your mind from dwelling on thei lives, sounds like a Dad is rational maybe just a move to AL for them is the answer.

jeannegibbs May 2015
"Not only do I NOT get any respect, I also am criticized, lectured to and yelled at for a myriad of things I can do nothing about!"

Yeah, there is A LOT of that going around. In your case, who is doing the criticizing? Mostly your stepmother? Is your brother supportive? It sounds like Stepmom's children are. What about outsiders, like doctors and agency people? What to do about it depends on who is doing it.

malloryg8r May 2015
An idea -- get a Geriatric Care Specialist involved with dad's care. This 3rd party would be neutral to the family drama, and keep everyone focused on the task at hand. Stepmother would be more willing to agree with that 3rd party -- and, if she chose to be disrespectful, or yell at them, then that person can be the Professional they are and tell stepmother she is out of line. It also sounds like you should be compensated for all that you do for your dad, and if dad/stepmom don't have the funds for that then even the recognition of all your hundreds of hours, should be brought to the fore--by that 3rd party Professional. Stepmom is probably so distraught with the immense changes in her husband that she cannot think or act normal anymore. So maybe when the dust settles and she apologizes to you, you can also find some way to recognize what she meant to your dad. Even just saying "thank you " to her can be a real ice-breaker. I sincerely hope you will find a 3rd party -- could even be dad's pastor or rabbi, but do get someone else involved! Several sessions with them could make everyone a whole lot happier!

sherry1anne May 2015
Try to make her your ally and get her on your side - you know - men are difficult and the two of you have to take care of her husband, your dad... yada yada yada

pamstegma May 2015
Wives really hate to lose control over their husbands. Stepmothers are even more insecure, since they are not your mother. Can you convince her to take some anti-anxiety meds? Can you convince her all the good ideas are hers? It may be time to involve her a little less making the decisions, but still make her feel in charge.

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