We take turns staying with my 94 year old father with dementia. I am currently on my seventh night of staying with him and I feel like I am losing my mind. I won't get into all the reasons but I keep thinking of something that I read on here about how the set up needs to work for the caregiver and not just the one cared for. What a novel idea. It goes against everything that is ingrained in me but it is ringing true on a deep level. Part of me thinks it may be easier to just suffer through this than to upset the apple cart. I hate the thought of being unfair to my siblings and that I am letting my father down. But another part says that they do not care about my needs and why this burden is more than I can bear. I have tried so hard to implement systems that would make it easier. I have tried to get on the same page. I have tried to say let us sit down and discuss things...but to no avail. So I am thinking let them figure it out. I even said that they can take the money out of what I would inherit in the future sale of his home to pay for a caregiver to replace me... and I would be willing to help in other ways... I think I am burnt out and I want out... would be grateful for others' thoughts on this. Thanks
You can tell them that XX date is the last night you will participate, so give them a little time to figure out an alternate plan. Yes, they will be pissed so expect it. And so what? They most likely won't stay angry forever -- especially when they themselves become burned out and realize you did the only reasonable thing.
I agree that you should not make an offer to reduce any of your inheritance or pay to keep that in-home circus in orbit.
You feel like you are ‘losing your mind’ after 7 nights of caring for father with dementia. Either F is particularly difficult, or you are particularly vulnerable. Either way, you can’t do it. Stop! You have tried “to implement systems that would make it easier”, and they won’t go along with it. So leave them to it! They will then need to look at the alternatives, once they stop blaming their problems on you. You may find that your example makes another one reconsider their own role.
If it is this difficult, F needs different care options. Without your help in the mix, it may make it quicker for your siblings (and F) to work that out too.
In fall 2023, older brother said that this arrangement wasn't working for him anymore. He said that we should move mom to a long-term care facility. My sister resisted this a lot. I sympathized with both sister and older brother. Eventually, sister was on board with this idea. All of us (including younger brother) made phone calls to facilities; sister was the one who found the place that we moved mom to, and mom resided there until her death two weeks ago.
Although the changes to mom's living situation did not always proceed smoothly, we got through them, and overall we were satisfied with her new home. Sister continued to see mom the most, older brother and I continued to visit regularly, and younger brother continued to visit occasionally.
A few things that helped: (1) Mom had substantial financial assets, and we all agreed that the priority was to use those assets for mom's care. We weren't going to make any decisions with the expectation of preserving inheritances.
(2) Both brothers and I still work, at least occasionally, and we were comfortable communicating that our jobs are important to us and we were not going to sacrifice them (and our finances) to take care of mom at the level sister was doing.
(3) The person who was closest emotionally to mom, sister, eventually recognized that she was choosing to be more involved. Visiting every day? Okay that sister did this, but it was not necessary. So, for example, when sister went on vacation, older brother and I did visit mom but we didn't go every day.
(4) We all did something, even if not much and from afar (younger brother). If any of us had totally jumped ship, there's a good chance we wouldn't be speaking to each other now. It's helpful to still have some connection to my siblings now that mom has died.
Has anyone considered that this arrangement may be unfair to your father? Dementia patients don't adjust well to change, and he has his adult children coming in and out of his home at various times, which may be confusing for him. If he is having behavior problems, that might be because he can't adjust to the schedule. Also, he could benefit from living in a facility where he has lots of things to occupy his mind, professional caregivers, friends, and planned activities.
Dad dropped the ball years ago when he didn't make a plan for his own eldercare. Or if he did, it was the one he has now, which is dependent on his kids. That's not fair to any of you, is it? And you are all paying for his negligence. This present plan requires that his kids outlive him, and judging from his age of 94, you're senior citizens yourselves and probably have the health problems that come with your own advanced age.
Find a memory care place for him before you all drop dead of Dad-Stress. I'm serious. It happens. What good would that do anyone? Call a meeting with siblings and fall down in a faint. Don't wear makeup, so you'll be really pale. Rend your garments like in the Bible and cry a lot. These desperate measures are required because they haven't listened to you in the past. Inform them that the Giving-Up-Our-Lives-For-Dad project needs a reset. Talk about nice places where he'll be taken care of and you can all visit and enjoy him without stressing yourselves to death.
I am leaving now to go to my husband's memory care home, where I will feed him lunch and visit with him and his friends there. It's a wonderful place, and his aides love him. Find a place like that for your dad, and you will all benefit. Good luck in your search.
All my brother said, "it's about time. "
please have a conversation with family. They may actually have your back .
It's so important..
Don't worry so much about what they will think or how this will affect them.
All of you need to figure out a better solution for your father. You are not letting him down if you can't continue providing 24/7 care for him. His needs are beyond your ability.
Saying no to caregiving is not unfair to your siblings. It is unfair for them to expect every sibling to contribute equally to caregiving full time. If they wish to continue, that is their choice. None of you should be doing this. It requires a staff of qualified professionals who have experience and training and the right tools and equipment to care for elders with dementia. A memory care home is designed to care for individuals with dementia in a loving, comfortable and safe environment.
You say your siblings can take the money out of what you would inherit in the future from the sale of his home, presumably after his death, to pay for a caregiver now, but where will the money come from for now? Do you or any of your siblings have the money to pay for full-time caregivers for your dad? Your dad's money should be used to pay for his care. If he has very limited resources, he may eligible for Medicaid, which will help to pay for in-home care or a nursing home, where he will get 24 hour professional care. Be aware if he does get help from Medicaid and ends up in a nursing home, there will be no house to inherit. His assets must be used first, and Medicaid can put a lien on the property to reimburse their costs after he dies. The home is exempt as long as he is living in it.
My aunt moved to be closer to her other nieces out of state at their request. All was fine or so I thought. My cousin had called me telling me aunt has dementia, she's in a bad state. Aunt's neighbor was also on me to come help. Every time I looked, my phone was blowing up from them to come and help.
I went and stayed for a weekend. Then a week and a few days and it was more than I could bargain for. I kept asking cousins who lived near aunt if we could all sit down and make decisions in regards to aunt's care. Dead silence. All they wanted to know is when can I come and stay with aunt and help again? Meanwhile, they were doing nothing but barking orders, criticizing and questioning everything.
I had it. Aunt didn't want my help. She wanted things her way. She has incontinence, she's stubborn, she goes into crying rages, she doesn't want you showering her or changing her. I couldn't do it anymore. I had a POA that wasn't activated and I just gave it up.
Naturally, aunt was screaming and crying at me that I am out of the will. I'm fine with that. I just couldn't sit back and let them use me anymore while they all enjoyed their lives. As long as I was the solution, problem was solved.
So, by me stepping back, the cousins became Sherlock Holmes and figured a solution out that doesn't include my assistance. I don't know how she's getting along, because I'm no longer in touch with the toxicity. I felt bad because I did want to help, but it just wasn't working for me nor aunt.
Step away and let them figure it out. As long as you're the solution, you will remain the solution.
It doesn't matter what your siblings think if you now bow out, because the truth of the matter is that you matter too in this situation, and you must take care of yourself both physically and mentally.
I can only guess that you have other siblings that are thinking just like you but like you, are afraid to upset the applecart too.
Perhaps you being the first one to say it out loud that this isn't working for you may just open the floodgates of what your other siblings are thinking as well and may cause proper action being taken of getting your father placed in the appropriate facility where you all can then get back to just being your father's loving children and not his burned out and overwhelmed caregivers.
I wish you well in finding your voice and getting the ball rolling in getting your father into the proper care facility.
We are not all Caregivers. I found out that when Mom lived here. It was like having toddlers again,your on call 24/7. I have to get my 8 hrs of sleep. Everynight Mom would get up at 3am thinking it was a new day. I would show her it was still dark out there and get her back in bed. By that time, I was wide awake and had a hard time getting back to sleep. Then she was up at 8am. The first night she was in the Assisted living I slept thru the night.
Inheritance, is that what your siblings are trying to save? There is no inheritance if its needed for someones care. It may be time to place Dad and give everyone a break.
"Your not responsible for the persons reaction when you say No." From the Book Boundaries by Townsend and Cloud. This is a Christian base book about setting boundaries.
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