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MercurysKid Asked December 24, 2023

Advice on helping family members understand level of disability.

New family caregiver here. 💕


 


I am currently providing care for my 90 year old Dad following a stroke. His medical team at the rehab hospital and the Geriatric Care Manager I have hired all agree that the best long term plan is for him to be moved to a residential care home. I have some family members (step siblings) who seem to be in denial or some form of benign ignorance about how serious his dementia is. They seem to think providing for his care is just “doing fun activities” and keeping the house clean and that me looking or touring potential placements is too soon and too fast. It is all very stressful and I dont know how to communicate with them right now. I asked the care manager to write up a her assessment and care recommendations to share with the family, but I just dont know. I want things to be different too but I have to see the reality and think about the best (safety and care) for my Dad.

MercurysKid Dec 25, 2023
Thank you everyone! I feel much more empowered to stay the course and do what is in the best interests of my Dad to give him the safest environment, best care, and quality of life. 🙏🏾

Fawnby Dec 25, 2023
Something that I never anticipated when caregiving family members was that relatives needed a scapegoat and it was me. Such as: He couldn't be so sick, so I must not be making the right decisions or taking good care of him. He'd be okay if only I entertained him better. He'd be cured of cancer if only I'd feed him mashed potatoes. He didn't have dementia, he was only bored; if I bought him Sudoku books, he'd be able to keep his mind alert and avoid loss of cognition. Much of this was nonsense, of course, and served to spotlight their denial.

Mercury, get ready. This is possibly the next step once they realize he's not going to get better and they have to blame someone.

As for the care manager writing her assessments to share with the family, I dunno. It might just stir them up. I tried writing bulletins every night after a long exhausting day at rehab with a relative, and not one member of his family ever thanked me. They did complain to him, though. I was "too controlling." (They talked to him most days on the phone, and he didn't want them seeing him drooling out of the corner of his mouth or peeing on a pad in the bed post-stroke, so he insisted they not make the 800-mile trip to visit.)

It might be better to give the steps as little info as possible but proceed on your own according to dad's medical team's recommendations.

You've got a lot on your plate. Good luck.

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MargaretMcKen Dec 25, 2023
Perhaps the best way “to communicate with” your step-siblings would be to ask one of them to come down in the next week or three to stand in for you for a week while you recover from the stress you have been under. Say that they can’t really grasp his needs until they try for themselves, and that you will be happy to discuss it further when that has happened.

If they won't or 'can't' do it, it gives you a solid base to say that they don't understand, don't want to understand, and that their views are based on wishful thinking.

Sendhelp Dec 25, 2023
There is no limit to the amount of money and stress that 'family members', step family can add to the cost of care for your Dad.

Dad's medical team, and the Care Manager all agree, and have made their assessment. Please do not ask more of the Care Manager to write anything to appease or share with the 'family'. Care Managers are expensive!

You are on the team, you are the team, and this is your Dad. You are doing right by him, that is all that matters.

Carry on. Be confident, do not over-think the good care you have planned.
You've got this!

Fawnby Dec 25, 2023
If you are the caregiver, I hope you have POA. That means you’re in charge and don’t have to do what the others demand.

You are doing the right thing to be realistic. Dad is going to get much worse, and he needs more help than you can give. Find him a great care facility, and pay no heed to those step-sibs who think post-stroke dementia care is a picnic in the park.

Easier said than done, I know. stay strong and believe in yourself and your decisions. Good luck.
MercurysKid Dec 25, 2023
Thank you 🩵 I am POA and I was still hoping everyone can get on the same page about his care since that would be less stressful for him because he knows that something is feeling a little tense in the family right now. Whew, I am so glad I found these forums.
AnnReid Dec 25, 2023
One of the potential unanticipated tragedies of caregiving is that differing opinions about decision making can cause “family” deterioration that becomes irreversible.

As POA, (Power of Attorney) your father trusted you when he was well to determine HIS best interests and carry them out as HE would have done if HE had remained well enough to do so.

Your position supersedes the “opinions” of other “interested” parties. You have NO responsibility to be concerned about anything or anyone other than your father.

Will you be able to maintain relationships with your step-siblings? Not part of your job as POA. Tragically, whatever their true motives are, those relationships may be come strained and ultimately severed.

Your job as POA is enough to do. Honor your father by making his decisions in the best way you can. That was what I did. I was insulted, harassed, accused, and lost sleep, but in the end, I knew that my LO had received the best I could offer.

For me, the ”family” relationship will be over as soon as the will is settled, and I’m finally realizing that there wasn’t really that much to salvage when our family member became dependent upon the loving care of others.

Hope YOU can maintain YOUR peaceful center as you move forward.

AlvaDeer Dec 25, 2023
Just for a start, you can't make anyone understand anything if they don't wish to.
So I would say:
1. Stop trying to keep everyone happy; you will no longer have time for that.
2. Start being gently but brutally honest. Tell them that you are his POA (imagine you are) and that you will be doing things now as you see best fits his needs along with the opinions/assistance of his medical care team.
3. Tell them that you appeciate they love and care for him, and that you love their willlingness, but that you have this, and that " FRANKLY a whole lot of input from others UNLESS ASKED now does more harm to me and Dad than not". Tell them "If I feel uncertain of the direction I will consult you; otherwise I appreciate you support without a whole lot of input."

Of late most of the problems I am seeing on AC Forum are a result of the lack of honesty and frankness.
That is the only way to handle these situations.
People may be well-meaning. I get that. But when you are up against it they do you no good, and may do harm. That isn't acceptable.

You have the power. Please embrace it. You are doing what you believe should be done. You are clearly well-spoken and capable. So you must handle this once and for all. Trust me, you aren't going to have time to placate everyone, and mixed opinions only add confusion to a time already filled with grief.
I wish you and your Dad the very best.

Geaton777 Dec 25, 2023
Why don't you invite them to be live-in caregivers for a few days so they have an object lesson on why he needs to be transitioned?

At the end of the day, if you are the only PoA for your Dad, you do what's best and just tell the others you are deciding based on your interactions with him and on the knowledgeable advice of the GM. You also tell them you're not interested in being his hands-on caregiver any longer but they are welcomed to do it.

JoAnn29 Dec 25, 2023
So step-siblings are not his children, did he raise them?

It comes down to this, what they think does not matter. You can keep them updated but your the POA and the final decision is yours. Based on the health professionals, your Dad should be placed. And with his money you do this. If one of the steps step up and say "I'll care for him" then you can consider that. A lot of siblings will sit and make their comments but will not take on the actual caring. You do what is best for Dad and you. As a POA you now have all the control. Your response to when a sibling does not agree is to say "then I guess your willing to care for Dad".

Grandma1954 Dec 25, 2023
The person that makes the ultimate decision on how to best provide care is the person that has POA or is the Guardian.
If you are POA then it is YOUR decision based upon the recommendations from the Medical Team he has.

If any think this is the "wrong" decision they can try to go to court and obtain Guardianship. But I think with the recommendations from the Medical staff they would not be granted Guardianship. (not to mention that the process is expensive and time consuming)

Do what you think best for your dad.
Keep them in the loop as to what is going on.
As long as they do not disrupt him, upset him leave visitation open but if they upset him during any visits you can restrict their visits. (for example they can not take him out if dad gets upset when they bring him back.)

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