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I just need some words of encouragement from anyone going through the heartbreak of having to think about placing parents. One was just diagnosed with lewy body dementia. Today he called me to come get him and I had to say no. I am so devastated and depressed. He must think I’ve abandoned him.

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Yes This is sad But when you face the reality of taking care of a sick Person 24/ 7 and you Know you cant because you are exhausted mentally and Physically - we turn to the professionals to give us a rest . Our Life force can Not always sustain another human being even if it is Our Parent and we Love them.
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Reply to KNance72
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I am sorry you are going through this knance gave good advice
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Reply to Mary444
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It is not you who made his placement necessary. It was his dementia that made it necessary. It was no longer safe or sustainable for him to be in any other setting. I know that it is very sad and heartbreaking but you can get through it. You can say “I’m sorry but it’s no longer safe for you at home. I can’t take you out but I can”….come visit you, bring your favorite snack, pictures, blanket, play your favorite music….whatever might brighten his day a bit.

When my dad complained to me how terrible he thought the memory care hospice facility was, I listened to him complain a little while and then reminded him it was no longer safe for him to be at home and tried the above.
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Reply to Suzy23
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Suzy23 Dec 1, 2024
PS. I just read something about Victor Frankl, who was a Holocaust survivor. He said that life is about “tragic optimism” which is acknowledging that all humans face three tragedies— pain, loss, and guilt— but need to find a way to move forward anyway.

He thought guilt arises because we have the freedom to make choices and thus feel responsible when things don’t go our way. But we know nothing you can do will end your dad’s dementia. So while you may have chosen on a certain day that it was time to put him in a facility, you are NOT responsible for his dementia.

Loss is facing the reality that everything we cherish is impermanent, including our own lives and those of our loved ones.

I wish you and your dad peace.
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Heypalua, you didn't cause this, you didn't give you dad lewy body. Your dad is where he needs to be , there is nothing that can change that.

Everyone goes through struggles. Reading this forum has made me realize that, some have it much worse than I do

Finding happiness in the little things of life helps me a lot. You can write a gratitude journal. Everything everyday that you are Greatfull for. You also can accept the fact that you can't change this, somethings just can't be fixed. Accepting that, then find your happiness inspite of diversity.

You deserve to be happy and healthy, I'm sure if your dad was of a healthy mind he would be telling you the same.
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Reply to Anxietynacy
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You didn't cause this.
You can't fix this.
This is aging in America and your parent HAD A LIFE. Now they are sadly having to negotiate these continual losses and you have to stand witness to them.
When my brother was diagnosed with probable early Lewy's he and I desperately moved to protect him and his assets. He was so eloquent about how he felt. Sad that he knew what was coming at him, but relieved I could protect his "stuff" and would be there, and glad to know why he suddenly saw the world so differently to what his life had been. He hoped against hope he would die before it "could fully get me". I hoped so as well. And in one and one half years he DID die of sepsis before Lewy's replaced him with what he feared would be a "pod person".

You are standing witness to grief that is so desperate, so profound, so complete, so devastating and hurtful and you are bound and unable to do a single thing about any of it.
Please consider seeking a bit of therapy from a GOOD cognitive therapist who will give you some tricks of mind to get you through what cannot and will not change. None of the online nonsense. Perhaps a Licensed Social Worker in private practice for life transitions.

Listen to Dr. Laura. No one like her on her Call of the Day podcast, or Sirius radio. She is honest, open, short and sweet, and I think often of her "Not everything can be fixed".
I, as an atheist, have muttered more times the Serenity prayer. Keep it close to hand and use it as your mantra.
Do not try to negate or deflect your parent's agony. Accept it and sympathize and say you are so sorry.

It takes great courage to get through this. It takes awful anxiety and many tears. When your Dad dies you will breathe a sigh of relief that he no longer has to be under torture, and that you no longer have to stand helpless witness to the agony of one you love.

There's nothing on earth that can change this. Nothing. You can sit 24/7 for the duration holding his hand, and you STILL cannot keep at bay what has come for him.
If being sorry could change anything your dad would be miraculously cured right now, would that not be the case. Again, I am so sorry.

For YOURSELF, and self care, it is important that this not be your life, but that it be a part of your life. It is important not to drape yourself in a mantle of guilt because guilt requires causation. You didn't cause this and can't fix it. The is about the other G-word which is GRIEF. And if this isn't worth grieving, then what in the world is?
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Reply to AlvaDeer
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Heypaula Dec 1, 2024
Thank you so much! For taking the time to care and write this and give me such wonderful assurance and advice. Its people like yourself that have been through this that help us to see there is a bright light and hope . Life can be normal again.❤️
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It is heart breaking but you know its for the best. He needs care of professionals. You do not want to be his caregiver, you want to be his daughter.
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Reply to JoAnn29
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You didn’t cause this and you can’t fix this. There is nothing else you could have done so please stop trying to make this your failure. It’s no such thing.
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Reply to anonymous144448
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THe first couple months after placement are the hardest. Many on this forum including myself, after a few months, are able to get through that feeling of guilt and grieving of placing the parent, and you soon realize it clearly was the right decision.
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Reply to strugglinson
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My Lewy body husband has been in care for eight months. He still regularly asks me to take him home. I tell him that it’s up to his doctor, and he then focuses on asking him rather than me. I felt bad using the doctor in this way until a nurse told they also blame it on doctors as a way of redirecting the residents in the moment.

After I’ve left my husband, I remind myself of the disaster I was trying to survive when he was home. It relieves some of the guilt.

As others have responded, it’s his dementia and it requires him to receive care -- that is the reality for both of us.
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