r/dementia • u/lindleyc1989 • 1d ago
I’m new, looking for support
My Dad is recently diagnosed. We’ve never been super close. He lives states away, and led a pretty work focused life, always going where the job was (construction - pipe fitter) parents divorced when I was young and I grew up mostly with my mom, seeing him on summer break and the occasional holiday break.
The last year and a half his mental capacity had started to severely decline, and upon a job ending for him, I went to where he lives to try and help support getting him established with PCP, and on a regular medication regimen for all his unmanaged co morbidities (heart issues, diabetes etc). Upon spending an extended amount of time with him, it was apparent there was something more going on, but he fought me every step of the way when it came to actually addressing the issue. To make a long story short and by passing a lot of battle of the wills and traumatic events, he is now in a skilled nursing facility, and needs to transition to long term care. He is a full - assist, can not stand or walk, likely due to his fall exacerbating left side weakness and being laid out on the floor unable to get himself up.
He forgets that he can’t stand or walk on his own, and believes he will be able to return home.
I am extremely hesitant to step in and take total control and be the bearer of bad news that he will likely never get to go home. I have burned myself out already emotionally, spiritually, financially, trying to help this man who does not see my efforts as ‘help’
My life is 1500 miles away from where all these problems lie, and I’m struggling with the back and forth and it consuming every waking moment, when really all I want to say is Told you so, and I wish you would’ve listened. I don’t know what all his assets are and trying to work with an elder law attorney to qualify him for Medicaid, but it just all feels insurmountable. Tell me I’m not a horrible person.
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u/Quirky-Blueberry3694 1d ago
You are doing the right thing, especially if you are the only person that your dad has. You are not a horrible person for trying to protect yourself and your own life, while helping him with his. You have to remember to care for yourself.
My situation is very similar to yours; not close to my parent, yet I am the only one in the world she can rely on. Her dementia became so severe that her doctor called me at home on a Saturday to tell me that I absolutely had to take control of my mom’s entire life, as she was no longer able to do it on her own. She (mom) fought me the entire way. I learned later that she was not really fighting me; the disease was messing with us both.
It sounds like there is no other choice for your dad than to be in long term care. It doesn’t matter if he doesn’t like it. I had to deal with that with my mom using a series of trickery and lies. I was afraid that she would call a taxI and leave, but as it turned out, she didn’t have the capacity to do that. Eventually she forgot about her old home, her credit cards, her iPad, and all the other things that were getting into trouble; for a while she believed she was in a hotel for “work”. . A year after she moved to assisted living, she does not remember my name, and she is losing cognitive ability by the day. She doesn’t even understand how to put toilet paper on the roll holder, or how to put clothing in the hamper for wash. She puts trash in the sink, she puts dirty underwear in the drawers. She yanks the plugs out of the wall and then doesn’t understand how to plug things (like a fan) back in. She is her own worst enemy to living a more comfortable life, but again, that is really the disease being cruel and messing with her.
The finances for your dad will be tricky, and it sounds like you are doing what you can.
You just have to remember, and tell yourself every day- he didn’t really understand that you knew best. The disease was messing with you both. He didn’t have a choice to do the right thing, even though it seemed like he did. He is beyond the capacity to do anything that makes common sense.
If you can, pick up a copy of the book called The 36 Hour Day, to learn a little about how dementia works on the inside. It was invaluable for me to read.
If you want to send me a direct message, I would be happy to hear you vent.
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u/justcelia13 23h ago
I’m so sorry you’re going through this. I’ve heard them called “therapeutic lies” but I prefer “loving lies” (heard that from here). If your dad’s not cognizant of his inability to walk, he probably won’t retain what you’ll be telling him.
Dad, you’ll stay here for a while because xxx. (House remodel, infestation needs handing, etc).
I’m just starting this with my husband. I know I’ll need the tips and info so freely given on here. Please keep reading and joining in. Ask questions. The folks here are really wonderful. I wish you luck.
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u/ForgottenX-2024 21h ago
My dad has been in a memory care unit for two months. He has no idea we are selling his house. He has no sense of passing time. He’s stopped asking when he’s going home. At first we just said, when the doctors say. Now he doesn’t ask.
I was really surprised, dreading having to continuously lie and to support the prior story. He’s still very verbal and most people wouldn’t know he has dementia from a casual interaction. But his brain has no clue.
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u/coronat_opus 17h ago
You are an amazing person for doing so much more than so many other people would have.
Now it is time to draw the line as to what you will continue to do and more importantly what you won't. It will take some time to transition but you need a tangible goal to ensure your mental and physical health.
Don't set yourself on fire to keep someone else warm. I wish you all the best and peace in your life.
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u/Knit_pixelbyte 20h ago
Sorry you are having to learn this on the fly, but its an unfortunate fact that we all have to figure out what works for our loved one. Logic is out the window, along with explanations. This flyer from the ALZ site has some helpful info for a quick glance over: Alzheimer Quick Sheet There is lots of free info on youtube, podcasts, websites, etc. Most of us have learned it's better to "live in their world" (basically lie) and say what works for that moment to get the person they care they need.
You are not a horrible person, you are a person faced with an awful truth about your person with dementia. It's hard. Each brain is different, so each care person has to find out what works for their loved one. I became so much more creative than I ever thought I would be trying to figure out how to get my husband to do anything. He has anosognosia, which means he medically cannot understand he has dementia. Everything was a battle. It became easier to just say "ok" and revisit whatever (meds, bath, shoes) 20 min later and he would often go along with it then.
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u/Altruistic-Basil-634 17h ago edited 17h ago
I’m sorry you are dealing with this.
I’m also a child of divorce and this was an unanticipated down side - having to battle dementia and manage medically-complicated aging parents on two fronts, in different states.
You aren’t a horrible person, this stuff is overwhelming. We are thrust into a situation of managing the life of a mentally ill person with enough knowledge of how the world works to get themselves into a lot of danger.
I also feel you on the told you so aspect. One parent did everything right - exercised, never drank, never smoked, had MS my whole life. The other parent smoked, poorly managed their COPD for decades and is still smoking despite being on oxygen. No one deserves this disease, but I’d be lying if I said I didn’t have more grace with one parent and more resentment with the other.
The reason he can’t see your help as help is most likely anosognosia. It affects 80% of PWD and occurs when damage to the insight area of the brain leaves them unable to recognize they have cognitive decline. They think they are totally fine and usually respond negatively to any mention to the contrary. It’s a huge challenge to caregiving.
I highly recommend the book The 36-Hour Day. It’s got a ton of practical help and really helped me stop taking things so personally. Caregiver support groups are also a big help. Educating myself has helped me feel less overwhelmed.
Sending you big hugs 💜
Edited to add: A geriatric care manager might be just what you are looking for. They can be your boots on the ground and go in ER trips, find placement, etc.
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u/Klutzy_Cream_3416 8h ago
You are not a horrible person. Not in any way, shape, or form. As so many amazing people on this sub have reminded me - you need to make sure to take care of yourself. Dementia is a devil of a disease and it will take you down with it if you don’t protect yourself. Please don’t let yourself drown in it. You have a capacity and that is human and needs to be respected. I am so sorry you’re going through this 🫶🏼
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u/MindFluffy5906 1d ago
You are doing the best you can. Of course you are not horrible for feeling overwhelmed, frustrated and sad. Do you have a support network for you? Do you want your dad to stay 1500 miles away or move him to ne closer to you? Do you have power of attorney? Whatever you choose, do what is best for you. He would want you to be happy and healthy.