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SoleSoul Asked March 2023

How do I stay strong by making the toughest decision I've had to make for a parent while also caring for my family?

I've been a caregiver for parent with dementia before, and I am in that situation again. I lived with my parents for most of my life, and when mom started to decline, the three of us decided to move closer to my sibling so family could make the most of the time she had left. Not a lot changed, visits were usually still just holidays and birthdays.


 


When mom really started declining, dad made a choice: We'd take care of her at home, instead of being surrounded by strangers in a strange place. Dad made most of the decisions, and I had to do what I could for mom within those constraints. At the time, the only help we received from sibling and her family was either criticisms and judgments or offers to give us a break for a couple of hours once in awhile. She wasn't willing to actually help.


 


Sibling had reasons for not doing more, Dad's a narcissist and his judgments were always swift and cruel.


 


After mom's passing, Dad withdrew and within a year of mom's passing, found someone who made him happier than he had been for awhile. I stayed with him, eventually becoming happy that he was living again, but never really wanting to become a part of his new family.


 


Dad tried to force his new family on the rest of us during our family gatherings, and when sibling put their foot down, dad did the same.


 


Eventually, I left dad's home on good terms, he was happy for me in his own way and he had someone he cared for in his life as well. Sibling and dad didn't speak for years until dad developed esophageal cancer.


 


I came back to help, and Sibling said they would as well. They were present for one consultation appointment at the beginning, leaving me to handle dad's care by myself. The first time he was hospitalized due to the treatments, sibling visited dad and at the end of that visit, chose to leave him to me. Sibling didn't let me know why, just that they wouldn't help dad unless he's the one asking for it. Dad told me sibling ambushed him with past dramas and I chose to believe him.


 


I was the one to help dad through cancer, but it was hell. His being a narcissist and my being not a doctor meant he didn't have to listen to me and he felt he didn't have to tell me what complications he was having until they were bad enough for hospitalization. I stuck it out because I was all he had. After treatment, and after his recovery, I returned to my life and dad resumed his.


 


Two years later, cancer returned and I told dad he'd be better off with professionals than with me as a caregiver because of how much he hid from me and didn't hide from them during the first treatments. I stayed where I was, and dad beat cancer with ease.


 


Then Covid happened. I don't mess around since I'm very high-risk and so is my family. We still mask up when we have to go out, but we still take every precaution.


 


Last year was a rough one for him. After he had a stroke and while he was going through a stay at a rehab facility I hired a geriatric care manager to help me out from afar. He fell not long after returning home, and the decision was made to get in-home care. They were great until questionable decisions were made without me. (I cannot get into more about that now.)


 


Last week, the in home care company abruptly terminated dad's service, and with no other choice, I risked Covid and came back to see how I could help his situation and realized I'm in over my head. He now has dementia, he's nearly bed bound, and after reaching out to a still very judgmental sibling who won't help me and thinks I should sacrifice my family and stay with him since he may not have long to live.


 


I don't believe I can provide the care he needs in his home. These last few days have been hell and I believe a memory care facility near my home is the best thing for him. I've decided that I won't be visiting him in the facility because of Covid concerns and the well-being of my own family and I need to know that this is what's best for everyone before I start.

BarbBrooklyn Mar 2023
Welcome, Sole!

It sounds like this tough decision involves doing what is best for all involved.

Don't overthink here. Get dad into that facility asap.
SoleSoul Mar 2023
Thank you.
AlvaDeer Mar 2023
Memory care may not take him at this point, JoAnn is correct, and he may require SNF or in facility hospice.

As to what is the best decision for you, I think only you can decide that. You didn't cause Dad's illness and you cannot cure it. Whether you are able to hold out until his death is anyone's guess. For myself I would have acted as your sister did, and would not have been as involved as you have been. Just to show you the ride range of choice on any continuum. I think it is time now for you to have a life, but that's my own opinion, and if such a choice makes you miserable then it's the wrong choice for you.

I sure wish you luck. This has been a hard journey for all invovled.
SoleSoul Mar 2023
Thank you, we're just getting started!

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JoAnn29 Mar 2023
You better make sure MC will take him if he has other health problems other than Dementia. They are not skilled nursing. You may need to find a Long-term care facility.

Yes, you can't do this. Tell anyone that says otherwise that you have done your share of Caregiving and Dad is too much for you. If Dad is in his 80s then ur approaching 60, and your a Senior too. Not as young as when u cared for Mom.
SoleSoul Mar 2023
You're right, a couple of his conditions do require more care that has been a deal-breaker in terms of finding a facility. It seems like 75% don't, but the 25% that do actually seem to be good places.

The next worry when I find a place is going to be deciding what he takes with him, how to transport him, and get him situated before going back and dealing with his house.
Geaton777 Mar 2023
The caregiving arrangement has to work for both the receiver and the giver. Sounds like it isn't working for you, so I agree with BarbBrooklyn... it's time for LTC.

What happened to the new person who made your Dad happier than he'd ever been? Did he marry this person? If so, where is this person in all of this?
SoleSoul Mar 2023
To answer your questions, Dad's new person decided not to marry him, though they were close for many years. They relocated to an assisted facility near their family in another state just a couple of years ago, at the beginning of Covid. Dad wanted to stay in his home instead of moving with her, and now that he's finally open to the idea, he requires more care than that facility can provide (They aren't equipped for memory care). But they talk to each other daily.

It was my first thought when I started looking into places for dad, because I knew he'd be happy with them. I reached out to the facility and based on my dad's medical needs, it isn't possible.

Thank you.
VictorianDoll Mar 2023
I would have to agree with all of the above. It’s time for LTC, time for you to breathe again. You’ve done all that you can for dad. You’ve given him unconditional love and care when others would not. You might reach out to his PCP for possible way to get him transported to that long care facility, that’s a tough one, not sure how to facilitate that. Good luck

NeedHelpWithMom Mar 2023
The only answer is to place your dad where he will receive the proper care. Tour some skilled nursing facilities and find one that will suit his needs.

Wishing you and your family all the best.

Lizzyvoo Mar 2023
Do what is best for you. No one is helping you, your Dad is beyond understanding now, and he is fading. So put him where he can be helped and eased. If you don't visit he won't know.
Take care of yourself.

TeethGrinder65 Mar 2023
I think you already know what's best for everyone, sweetheart. If you're looking for validation on your decision, you've got it from me. You've done a lot; you're at risk; you have a family. You don't need to justify your choices to us, to your sibling who has done very little to help, or to anyone else.

Lymie61 Mar 2023
First, your sibling made their choice about what they can and can’t do, good for them, you are allowed and should do the same. Obviously there is some real pain involved between your sibling and father, I see nothing wrong with them drawing that line in the sand about only being willing to help if Dad asked, while it certainly feels like they are unwilling to help you and obviously ends up working that way the truth is they are saying no to helping Dad not you so try to remember that. They also need to accept and support what you say and know you can and can’t do, nothing wrong with saying, I accept your decision you need to accept and support mine but I wonder if what they really meant when suggesting you stay to take care of Dad because he won’t live much longer is that they worry you will be sorry if you don’t do that simply based on your past devotion to Mom and Dad.

I am not saying your sibling is right, in fact I urge you to stand by what you have already established with Dad which is that you are both better off with professionals doing the caregiving, your days of Home caregiving have passed. Whether or not you visit it sure sounds like you plan to be the coordinator so unless there are important people who visit in the area he is currently or in the area his companion moved to I think your instinct to place him closer to you is wise, there will be things to oversee and take care of even if your doing it from a distance and that gives you the opportunity to be closer to it all. Also I know at least during the height of the pandemic some nursing homes made arrangements for dying patients and their families by sequestering the patient in a room away from others next to a rear entrance for instance so the family doesn’t come in contact with anyone else in the facility. If you would like to be able to visit him maybe you could explain the situation and ask if they could set up something to protect your family with each facility you visit or talk to as your choosing one.

Thats only if you want the option to visit him of course and no judgment from me on wanting to do that or not. You have without question gone above and beyond for both of your parents as has your family by the sounds of it, no guilt. You will experience grief even for a narcissistic father as he continues through this process, you may grieve for the relationship you always wanted as well as the one you had but don't even put guilt in your vocabulary because it has no place there, your parents were and are both lucky to have you wether they acknowledged it or not.

ConnieCaretaker Mar 2023
Well, you did it your way, so it's time to place him and you need do that your way, too. Some around here, suggest you call 911 and get him to the ER where you then tell them you're not taking care of him anymore and either is anyone else..................they will need to get their social worker involved and get him placed. Do not answer your phone until Dad is placed.

Then you can plan your next vacation and block your sister until Dad passes away. Google Wellness Resort and pick a destination.

BTW, where is the new woman who made Dad so happy?

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