Hi everyone,I’m writing here because I don’t really know who else to ask, and I’m struggling a lot with guilt.
I cared for my dad at home from January 2024 until March 2025. He had already been diagnosed with dementia, but he didn’t accept it and refused help for a long time. During January and February 2025, his condition clearly got worse. He had been sundowning for months and waking up very early every day (1am, 3am, 5am), but during that time he also started getting lost more often, confusing me with a “twin sister” (I’m an only child), misusing objects (like putting breakfast in the dishwasher), having night incontinence, and seeing people who weren’t there.
I took him to his neurologist in February 2025, and he was prescribed risperidone. On March 13th, he was admitted to a care home. At first, the plan was only for 15 days, because I had surgery scheduled for March 18th and I physically couldn’t care for him alone anymore. A permanent place became available, and with his consent, I decided he should stay. When they ask him if he knew where he was, he knew it but thought I was his sister (this had been happening for a while back then).We had actually been looking at nursing homes together about a month before he moved into the one he is in now, I involved him in everything. He was also admitted in one nursing home but he didn't want to go to that one so I respected his decision, because I didn't want to get rid of him, I wanted to help both of us (it was only me taking care of him, I had depression, anxiety, I was in a very bad mental state because of the situation, which makes me feel like I'm putting myself like a victim and I also feel guilty for this, when I know I did everything I could and more for him).
Three weeks after entering the care home, he stopped taking all his medication without anyone noticing at first (including his epilepsy medication and risperidone). When I found out, I warned the staff, but 2-3 days later he had a severe psychotic episode. That month was extremely hard. When he was starting to stabilize (after being in the hospital for over a week), he then had two epileptic seizures and almost died (was in hospital for another week or so). He survived, but things were never the same after that.
Now, nine months later, he has gone from grade 1 dementia to grade 3 (the maximum level). I can’t stop feeling that this is my fault, that putting him in a care home made everything worse or accelerated his decline.
I'm so angry none notice he wasn't taking his medication. He had paranoia because they mixed his meds with his food and he saw it, so he started hiddin them (at home it was me the one who made sure he was taking his meds, even tho one day he didn't want to).
I did everything I could while he was at home, I followed medical advice, and at that moment I truly had no other option. Still, I feel a huge sense of responsibility and I don’t know how to live with this guilt or who to ask for help anymore. I know I took the decision of putting him in a nursery home because I couldn't handle the situation anymore, and I also needed help.
But my mind keeps telling me that dad is like this because of me, that I've ruined his life and destroyed it, that all of this is my fault.
Can entering a care home really cause such a rapid decline, or am I blaming myself for something that was already progressing? My father is the person I love the most in this world, but it was too much for me to handle (only child, no family support, mom died 15 years ago when I was 24, it has been very difficult, still I feel his decline is because I wasn’t there taking care of him, even tho I had surgery and 4 days after I was spending every day at the nursing home, while I could barely walk). Why do I feel like I’ve destroyed my dad’s life? Mi mind is destroying me.
I'm afraid of my own thoughts.
Guilt requires both causation and a failure to fix out of evil intent.
This doesn't apply to you.
What you feel is grief.
That is appropriate, and what I call the "other" g-word. And this is WELL WORTH GRIEVING. If this is sadness and loss, what is?
If you cannot see the logic and the difference in a felon who does evil deeds and a loving daughter going through pain then you need the help of a good cognitive therapist.
Words you are telling yourself at present are self-harm.
You cannot afford to waste energy in harming yourself. You will need all your strength to face what is coming.
You father has an ILLNESS. To suggest YOU are in any way responsible for it is almost a kind of hubris, a kind of grandiosity, a kind of god-like powers that a single human individual simply doesn't possess.
I am truly sad to hear all that has come to your father. But I am sadder still, in this time when you require all your strength, that you are preventing yourself from acknowledging the truth.
Words we tell ourselves have great power.
You cannot continue to allow this.
Do please get help for yourself in the new year if this thinking continues.
Again, I am so dreadfully sorry. But were we each here on the Forum, all of us--members who have lost loved one after loved one to this illness--to think WE CAUSED IT? Sorry. That's unthinkable.
I didn't destroy my mother's life same as you didn't destroy your father's life. The condition of dementia did that and time worsened their brain damage and dysfunction. We could've moved our parents into Buckingham palace and it would not have stopped the ravages of dementia, my friend. Do not blame yourself for something you did not do. Instead, pray for dad's swift and peaceful passing into a realm of peace and understanding that is perfect. No pain, no confusion, no need for medications. Just peace.
Then I will say that you didn't cause your dads dementia nor did you make it worse. That's what dementia does, it gets worse never better.
And thank God your dad is now in the right facility where he is receiving the 24/7 care that he requires and where you can get back to just being his loving daughter and not his burned out and stressed out caregiver.
Dementia is a death sentence and there is nothing you can do or could have done to stop the progression of it. That's a fact. So please just enjoy best you can whatever time you may have left with your dad, and know that you did the very best you could with him.
Your dad if he were in his right mind would NEVER want you feeling guilty or beating yourself up because of him. He knows you love him and have done your best, so rest in the knowledge of that.
God bless you.
You might also read about the progression of dementia. It doesn’t continue on indefinitely with no decline in health. It’s inevitable. My father stayed in his home receiving impeccable care and getting his meds administered perfectly by family until he began to have severe symptoms, delusions, hallucinations, lost mobility, took a sudden decline…..home hospice called in……and he passed away a few days later. It wasn’t hospice, or his meds or anything except it was the trajectory of his condition. People who have dementia rarely live long happy lives. I’d seek therapy if I felt bad about my efforts as a caregiver.
Sorry for getting off track, I'm just here to say you don't deserve to blame yourself, you've done the best that you can, the decline is unavoidable. I hate this disease. I truly truly do! Because it robs you of your loved ones years before they actually die and they just suffer. And I totally agree with the lady up above that said the best thing at this point is probably to pray their Swift demise so that they don't suffer any longer. For years my mom had been saying that she was tired of life and wished it was just over with. She didn't say this out of depression, she said this out of not wanting to live with this disease anymore. She had had it since at least 2010 and it was very slow progressing but she suffered for a long time and because my dad was as sick as he was, everything was about him and she got neglected. I was not able to step in and do anything because my dad totally controlled the situation. So now, unfortunately so much later, she's actually getting the care that she needs. I think your father is in the best place he can be where you can visit as a daughter without any of the stress and hardship of being a caretaker. I wish you all the best. Be kind to yourself!