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Long story short - my Dad had a massive hemorrhagic stroke a year and a half ago, leaving him profoundly brain damaged and paralyzed on his left side. Emergency surgery saved his life.

If anyone would have bothered to ask me if my father would have wanted to live the rest of his life in diapers, never able to walk or care for himself ever again - I would have said NO. But I was not his emergency contact - his 82 year old mother was. He had no POA/ living will or insurance. No plan for long term care. We had to go to court together and were granted co-guardianship.

So here we are. Several hospitals, doctors, physical therapists, and nursing facilities later and not much progress has been made. My grandma has had him moved five times already as no place is ever good enough and she wants to move him AGAIN. She has spent an enormous amount of his money doing this and when it runs out (in less than a year I estimate) we will be left with NO other options other than a medicaid facility.

Whenever my Dad has a complaint he calls her and then she in turn calls me to complain. I'm at my wit's end. If I could make everything better for my Dad I would but I can't. How can I get my grandma to accept the reality of his condition and get her to think more rationally about his long term care instead of focusing on every little complaint and treating it like a crisis?!

She is an enormously caring woman who wants the best for her son and it is very hard for me to talk to her about this. She keeps hoping he will recover enough to go to assisted living but has been told multiple times that he requires too much care for this to be possible.

Ultimately, I will end up with the sole responsibility of caring for him once she's gone and, quite honestly, I have my own life to live too. I can't afford to spend all my time obsessing over the details of a hopeless situation.

What can I do? Do any of you have similar struggles?

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I'm sorry for your situation. This sounds hard in so many different ways. Do co-guardians have to agree on things? Can one decide to move your dad even if the other one is against it? Is she still competent? Many are at her age, but not all. When this is all your responsibility, you will not have to handle it how your grandma is. You do it your way, with dad being well taken care of but you living your own life as well.
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outsidethecage Feb 2022
Major decisions need the consent of both of us. She is still competent and takes care of herself quite well but she is getting older. I wish she would focus on her own well being a bit more but she is stubborn like I have never seen. Things will work out somehow. Thanks for the response.
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What a truly dreadful situation for you to be in, not to mention your poor dad. Your grandmother is trying to do the impossible and hoping FOR the impossible at the same time, by staying in denial about the whole situation with her son, I suppose. She's better off facing the truth: that dad is not AL material and never will be, that he has X amount of funds and when they run out, Medicaid is the ONLY other option to pay for his care. Period. Have that talk with her; short & to the point. The more she moves him, the more chaos ensues and the shorter time his funds will last, forcing him into the SNF even sooner.

I don't think there's any other choice in this matter but to have dad eventually go into a Medicaid SNF. If dad is competent now, have him sign a DNR and make his final care wishes known, so you can carry them out as HE wants. I myself would never want my life extended if I had a stroke and was paralyzed, etc. But unfortunately, there were no instructions written out by him should that event occur. Now you are left to deal with this situation, and a grandmother who doesn't want to. Perhaps a visit to a Certified Elder Care attorney WITH grandma present will help her understand the options a bit better, coming from an attorney vs. her granddaughter. Just a thought.

I'm so sorry for your family. May God grant you the courage and strength to face all of the decisions that you'll be dealing with in the future.
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outsidethecage Feb 2022
Thank you for your kind advice. If any good has come of this it is that I have never seen a mother so compassionate and caring. She never gives up hope.
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I was made guardian and conservator of a relative several years ago. A sibling was co-guardian with me. During the court hearing setting this up, the judge advised us against having co-guardians for the very reasons you are experiencing now. She was correct. The situation became quite stressful.

Your poor dad. If he is cognizant and able to communicate at all, you need to bring in an attorney and set up a healthcare directive or whatever it is called. He needs to have his wishes in writing and everyone needs to honor those wishes.

Personally I'd never want to be an invalid in diapers in a SNF. I have it in LEGAL writing and my spouse, siblings and friends are very much aware of my thoughts on this.
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Take Grandma on a tour of a few Medicaid facilities, see what she thinks would be good for him once the money runs out. Call it planning ahead.
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I'm afraid it sounds like you just need to be there backing them up and picking up the pieces. If your grandma is mentally competent, which it sounds like she is, she has a right to spend her money the way she wants. If both of them end up in Medicaid facilities, so be it. Don't try to change your grandma. Accept her point of view and just be there for her and for your Dad, but don't let her anxieties get into your head. You have your own responsibilities to take care of as your first priority. If you need it, seek therapy for yourself to be able to handle this stressful situation. Your responsibility to your Dad is to make sure that he is getting the best care that he can afford (with help from his mother, for as long as she provides it). You don't mention if you are POA for your grandmother. You may want to make sure that she has her paperwork in order (living will, Powers of Attorney for medical and financial decisions, will if she has assets). Also, make sure that she and you are on file with Social Security and Medicare to be able to speak on his behalf (and on your grandmother's behalf if you are her POA). Banks and financial institutions also have their own POA forms. All the best to you.
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Debstarr53 Feb 2022
The OP said grandma is spending HIS money and will run out this year. Yes, her responsibility is to her dad, and not letting grandma spend all of HIS money to move him around, is what is best for him.
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Ask for a care plan meeting with the facility your father is currently at. Make sure both you and grandma go. Ask the facility to provide copies of their plan of care for your father. Go over it and ask grandma if she has any questions or concerns about his plan. Also talk about how to address concerns when they come up. I'm praying that honest conversations and setting realistic goals might help calm the nitpicking.
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outsidethecage: Perhaps you need to retain an elder law attorney.
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Someone (and maybe not you) needs to explain to Grandma that there's a relatively small window of time when improvement/recovery from a stroke happens, and your dad is well past that window. He won't get better, because those parts of his brain are not there anymore.

Moving him constantly is cruel IMO, but if your dad is well enough to convey complaints to her, I suppose he can tell her if he didn't want to move.

It looks like you're going to be putting him on Medicaid one way or another, because if he only has a year's worth of funds left, that won't be getting stretched enough to prevent that inevitability from coming one day. You might need to tell Grandma that the moving needs to stop so you can get him lined up for Medicaid. It doesn't happen overnight, so you don't want to be caught unprepared.
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