How do I handle the crushing guilt?

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How do I handle the crushing guilt?

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I am 72 yo. My father is nearly 99 yo and is in a wheelchair. He lives in an assisted living facility. His dementia and hallucinations are increasing. He rambles on and on about things he thinks are real. I HATE being around him. I just can't take him anymore. I feel so crushingly guilty. I don't want to be around him. My only sib moved out of the country. I know that I am a horrible daughter for feeling this way. He gets angry if I try to reorient him. Ex: he said that the director came into the dining room screaming at him to get out, flailing her arms, threatening him. He says that he roams the building all night. None of it is real. It is so so hard to sit and listen to his rantings and ramblings. I can't take any more of him, my tank is totally empty. I used to go over a couple of times a week. Now I can barely stand to go there every couple of weeks. I had a very bad childhood due to my parents mental health issues. I have come to resent him so deeply. I can't find a counselor who takes my insurance. The facility he is in does not have a support system for families. I have no one to lean on. I am desperate and overwhelmed with guilt.

Alzheimer's & Dementia Burnout Guilt

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Contact Alzheimers Association, the is a 24/7 phone number you can call . Trained people will answer .. They will listen and will be able to head you in the right direction. I attend an on-line group. I have for the last 2 years. It really helps .. I also talk, one on one, ( at no cost to me ) with a trained therapist. You are not alone. If all CareTakers were honest I’m pretty sure they all have shared your feelings at one time or another . I know I have ..
24/7 Helpline 800-272-3900. It’s a start .. Please remember , your human, you didn’t cause and you can’t cure it . You can’t change who they are in there illness but you can change your reaction to the warped reality they live in.
Give your self a gift , make the call …

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Don’t feel guilty. Most of us couldn’t take it. I would cut down the visits to once a month or less. He has lived longer that most people. You visited him more than my husband visited his mom. She had Alzheimer’s and was like a 2 year old. They weren’t close and he would only visit every 6 weeks.

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Oh, I am so sorry, Grandma6m. Regarding the crushing guilt, well, I have found that I feel guilty about my mom (advanced Alzheimer's) no matter what. The guilt is awful, and doesn't necessarily disappear even if you are being the most amazing Super Woman daughter. The guilt and the grief. The grief and the guilt. They are both tragically tied to the children of dementia patients. Here's what helped me. So.... I couldn't see my mom for over a year due to covid lockdown. I cried every time I passed her building and looked up at her window. When I finally got in to see her, I was happily surprised and amazed to see she had not deteriorated. After that, I trusted the care staff more and was able to take time for myself with less guilty feelings. As for my dad, who doesn't have dementia but requires a lot of support, YES, I hate to admit that I often can't look at him because I'm so sick of doing everything for him without ever a "thank you". Sigh. You've got it 10x worse than me because of your bad childhood. Grandma6m, on behalf of your dad I'd like to say, "I SEE HOW YOU HAVE HELPED ME. THANK YOU". Cut yourself a break if you possibly can. Mark your calendar when you are willing to see your dad again. Between now and that day, you are required to rest and do things for yourself. God bless you.

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You are not obligated to care for someone that has been abusive to you.
If you want to "manage" his care, check in on him do it from afar.
Visit when he is having lunch or dinner.
Stand way off to the side so he does not see you and watch him for a while.
Keep in contact with the staff and if he needs anything you can provide what he needs, just drop it off at the desk when he is someplace where he will not see you.

If you feel as if you "have" to visit do so but if he begins to launch into a tirade LEAVE. Don't say anything, do not engage just leave.

You are NOT a terrible daughter for feeling the way you do. Any parent that abuses their child is a terrible parent and a terrible person.
I think you need to talk to your doctor about helping you find a therapist. In this day and age any mention of depression, mental instability will get a referral to someone ASAP.
Call the Alzheimer's Association and find out if there is a Support Group near you. they also have Counselors that answer phones 24/7 and they may be able to help you.
24/7 Help Line : 800-272-3900

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Does he know who you are? If not stop going. Your father is the equivalent of dead to you, his body occupied by someone else. You are not a bad daughter in anyway, his body just isn't your father any more. Grieve for your loss of him in the same way you would if he had died, and stop going to see this stranger. It is very sad, but if he doesn't recognise you then the man you knew is no longer with us.

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My heart goes out to you.

I'd like to give you a gentle hug and say "you are okay just as you are."

Please note: S-T-O-P trying to explain or talk to your dad in ways you think make sense as these words do not make sense to him. His brain has changed. He will argue. It is an exhaustive waste of your energy and time. If need be, agree with him. "Oh yes. You are absolutely right" (I do this with a narcassistic client who has severe dementia.). In his way of being in the world, perhaps with or without dementia, he is right (this was my own father when I was a child. . . I was always wrong.

Guilt is a tough one - although I believe with conscious inner work and awareness, it can be 'countered' with positive responses.
For instance:
1. You say: "I don't want to be around him"
1. You respond: (to yourself): "This is a very difficult situation and I need a break, it is very stressful." I need to relax, meditate, exercise, do anything to shift right now. Aand walk away. Even for a few minutes.

2. You say: "I feel so crushingly guilty"
2. You respond: I acknowledge this is how I feel, although I have the 'shoulds' and not doing what a part of me believes I 'should' be able to do. I acknowledge I am doing all that I can. Period. No judgment.

3. In other words: Counter the negative self-talk by replacing it with either neutral responses or positive ones "This is emotionally and psychologically, mentally challanging and exhausting for me. And, this is understandable. I need to give myself a HUGE break, both mentally and by distancing myself from my dad.

4. If therapists are not available, call the Alzheimer's Association and see if they have support / volunteers / staff.

5. Many therapists work on-line / zoom now. Find one for yourself.

Gena / Touch Matters

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grandma6rn: Imho, you are NOT a horrible daughter. You are a mortal being; do not berate yourself. You are a STELLAR human being.

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We went to a funeral for a man who had alzheimers. We expressed our love and sympathy to his widow for her loss. She said, "it's ok. I haven't lost anything. I lost my husband 10 years ago. " Now after my wife's 6 year decline with alzheimers, I understand what she meant and felt.
You have already lost your dad, the person you describe is not him. Don't feel guilty

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Like someone else said if he’s delusional does he even know you’re there? And the fact you had a bad childhood, home life I don’t think you owe him much at all. Don’t feel guilty, it helps no one and only hurts your own health. I know, easier said then done. Don’t let anyone guilt trip you either. Talk to your doctor or therapist. Focus on you, you deserve your own life and a happy one at that.

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That is a good point Vjg6727. The father may not even realize or care that it's his daughter visiting him.
He could very well be just so absorbed in his own nonsense and delusions that it doesn't matter who he's telling it to as long as he's telling it to someone.

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My heart and tears go out to you. There’s some good advice here. Anxiety medicine may help him. I’m heading towards your predicament as my dad is 96 and beginning his far-flung stories. I also had a dysfunctional childhood. I have come to the conclusion that to avoid guilt, I need to do what gives me peace. My sibling has distanced herself too. I don’t wish to abandon my dad but if he became so delusional as yours is, would he even know you are there? I know I pray for my dad every day just for joy and a belly laugh. In the end, I think our lesson is to take care of how we feel we need to handle these hurdles and it will be unique to each of us. I wish you peace.

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Guilt is life sapping. If you could imagine your negative reaction to being around your father as perfectly normal. He’s difficult for sure. If I were in your shoes, I’d spend time talking to the staff about their thoughts about what he may need - medication? Changed placement? Those conversations can be a good substitute for your visits with dad, and possibly result in a needed change in the care provided.

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Do not feel guilty! You did the best you could or can do. You have to think of your self! Or your be in the facility yourself!

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I read your story and if anyone should feel guilt it should be this man - certainly NOT YOU. You had a horrible childhood - not YOUR fault - and you are suffering because YOU feel guilty. Why should YOU feel or be guilty? You have done NOTHING WRONG. First of all, based on the lack of a good loving relationship and now with his broken mind, YOU ARE NOT OBLIGATED IN ANY WAY TO HIM. He made his bed and now he must lie in it. At once, and I mean now - STAY AWAY FROM THIS MAN BEFORE HE DESTROYS YOU. My blood boils when I think of what he has done and is doing to you. He has been placed and that is where he should be - not with you or having you visit him. Is it possible to move him to a different facility? Second if no one will take your insurance, can you speak with a member of the clergy? And sometimes social workers and therapists can be found who will work fees on a sliding scale. Stay away from him and do what makes you happy - NEVER FEEL GUILTY FOR WHAT HE HAS CAUSED. You are innocent. Move on and move forward - you will be far better off.

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Amen to that, Riley.

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Perhaps his doctor can give him anxiety medication to relax him. Would make your visits a lot more pleasurable. No need to go for a visit with him when you’re hating it the entire time.

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a very low dose of quetiapine or one of the antidepressants that are well tolerated by elders (trazodone, mirtazapine) can also help to 'reset' the brain function and can make it easier to redirect him to a different topic.

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Try to step away from your feelings of guilt. You are not required to visit your father, but if and when you do, take a new approach to his rantings and delusions. Do not try to "correct" him. You can validate his feelings even if what caused those feelings was not real. If he says the Director was screaming at him, you respond with something like, "That must have been frightening," or "That must have been embarrassing, or "That must have made you angry,". Think of similar responses appropriate to various claims. Do not argue about the reality of those claims. Acknowledging his feelings should make any visits less contentious and less stressful.

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I want to make sure you know that your bad childhood and their mental health issues are not your fault.
Your resentment towards your father (and probably towards your mother too) did not happen when his dementia started to advance. It takes a lifetime for that resentment to accumulate before it shows itself. I understand because I have it towards my parents too and not without good reason.
I don't know if your parents used guilt as abuse when you were a kid. Mine certainly did.
You do not owe your father anything. You do not have to go sit in a nursing home while an incoherent elder carries on like a lunatic. The visiting isn't worth the effect it has on you. Stop visiting him. Or cut your visits down to once a month if you feel you must go.
If he's so out of it with dementia that he believes his own lies, then it won't matter one way or the other if you stop visiting him.
You don't deserve the guilt that's on you because you didn't do anything wrong. Try to remember that.

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Gosh sounds like PTSD and anxiety attacks . I don't Know if you Can find a psychiatrist or he Needs medication for his Hallucinations . Maybe speak with the doctor at NH and ask for medication to relieve him of his stress and hallucinations . Your reaction is Normal . We are not super heroes . There are support groups with in Alzheimers groups and people you can talk to - you will feel better . If he is on Hospice perhaps you Can speak with the Nurse or case manager and get him medication to ease his suffering . Panic attacks are a Normal way of your Body telling you " I can't do this any more . "

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Please ask your father's doctor about his symptoms, get him a referral to psychiatry or talk to his psychiatrist. He definitely needs some help with his anxiety and the hallucinations.

Youi are not a bad daughter for feeling overwhelmed by your father's wild accusations and behavior. Please look at all options for support groups in your area and online. Consider groups for those with mentally ill family members, dementia family members as well as those dealing with anxiety. You may be able to get online/telehealth sessions with a counsellor. Also check with local churches for a counsellor and support groups.

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Believe me, I understand the guilt. I caretake my mother who has bipolar and now dementia. One of the challenges are other people’s reactions. Some of these posts state the obvious and it probably doesn’t alleviate your guilt. You are an older person now too and you deserve some peace. I’m not a big religious person but a friend who’s a minister said to me. “You are your mothers child but you are also gods child and you deserve joy.” It really helped. I’m 62 and my mother is 89 and I don’t want to be doing this for 10 more years! You are human, and when it’s all over you can look in the mirror and know you did your best.

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My dear, I am sorry for your desperation. I recall it all too well taking care of my dear mother who was ridden with Alzheimer’s and dementia. She lived with us so there was no escaping it for me And there were times where I absolutely felt I could not do it any longer.

I would do as another poster said, continue to visit but perhaps keep your visits short. In addition, I agree don’t try to correct your dad when he is wrong with the story. Just listen, nod your head and move on.

It would seem that most would disagree with me here, but I do feel we have an obligation to our parents. You would want to have an advocate if you aging. Everyone wants to feel love from somebody.

As mentioned before, I moved my mother in with me, I did not work to care for her. It was the toughest thing I have ever done, but also one of the most rewarding things I have done, in hindsight as she has passed now. I look in the mirror now and I am so proud of the efforts I put forth in caring for her and I fear if you already feel guilty, if you cut the visits you will feel that more.

Listen to the advice of others, pick and choose from each, and make the decisions that work best for you.

You have to look in the mirror and be happy with your self and your decisions.

Best of luck - hang in there.

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“I look in the mirror now and I am so proud of the efforts I put forth in caring for her”

hugs!! :)

“Listen to the advice of others, pick and choose from each, and make the decisions that work best for you.”

i agree :).

——merry xmas from me to everyone!! :) :)

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You might google courses or support groups for your feelings. I found some nifty you tube videos from Australia, free, thanks to the Australian people. Feeling guilty makes no sense. You didn't make your Dad so disturbed, and you can't help much at the moment. It is a way of holding onto a relationship that isn't what you wish. Send him candy, pictures, whatever he might enjoy, and take some time off. Reconsider your plan in a couple weeks when somewhat recovered. What can you do, if anything, to help him? I vote for showing up so the staff knows you are aware of his care. I would limit time trying to talk to him to when he is somewhat coherent. Leave when he ceases to be.

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Your father is seriously mentally ill. He has lost all rationality and contact with reality. In addition, his behavior is agitated and disruptive. Only professionals can handle him at this point, no lay-people like you. Stay away from him, it's alright. Your visits do not do him any good, on the contrary, they startle him. Suppose that your father had a heart condition that only a very delicate surgery could save him from dying. Would you feel guilty because you cannot perform such surgical procedure? Well, this is a similar situation. Do not feel guilty because you aren't a psychiatrist to be able to handle him. Incidentally, when patients become this agitated they are usually close to their end. His outbursts could trigger a fatal heart attack at any time.

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1st of all, Nursing Homes are a Horrible place to live and I know this from experience.

They are all understaffed and never answer their call button.

I hope your father is mobile or he'll beating in his own urine and feces for up to an hour or more.

If you think you feel bad, try spending a few days where your Dad is.

Your Dad could be having halcinations from having a UTI (Urinary Tract Infection)

Regardless, so what if he talks about things that didn't happen.
It's probably all the meds they have him on.

Anoway, why do you think you have to correct him, it doesn't matter.

My 97 yr old Dad was a retired fireman and he lived at his own house with a Caregiver and he would talk nonsense but it wasn't nonsense to him and I didn't make it my mission to correct him.

He asked me once if I heard about a hundred fireman all dancing naked downtown.

I said wow Dad I didn't hear and let him tell me then I said how weird and it must have been pretty funny, ect.

My Advice to you is learn to dance in the rain.

Bite your tongue and go see your Dad minimum once a week.

Prayers

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I take screenshots of responses that I read here.

When I am desperate, I pull them up and re-read them. This is a place where people UNDERSTAND. The rest of the world has NO idea.

Even a therapist, who may be helpful or not, is not with us 24 hrs a day. I can pull up these screenshots when I need them. Like, immediately after I get back in the car after a visit.

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I take screen shots too 🙏🏼 When I struggle with my 97 going on 98 year old disabled mom who is quite sound of mind and micro manages me from her chair I read them again. They help me to rationalise and have brought me some peace of mind. Praying too. Thank you.

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I agree with most of these answers. There isn't any point in seeing him unless you are refreshed and able to accomodate the delusions. One thing though. Send him cards with self explanatory pictures. That way, when he thinks of you, if he is able, he will see you in a positive light. And you will feel better knowing that you reached out.

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I've found really nice cards at the Dollar store. And, send some to yourself! Given that your childhood was impacted by their mental health issues, might be good to give yourself a nice boost once in awhile. Finding mental health providers is so hard. How about checking out the internet for Zoom meetings, there are so many that cover all kinds of things. There might be a group that addresses a few of your concerns that you could sit in on. I signed up for courses in New Zeland on demetia care-which was suggested here. Who knew that was a thing there?
Otherwise, your father sounds pretty toxic, best to parse out the time you spend with him. If you can stand it, take a photo or two of him when he's in a good mood, a small remembrance when the insanity is done.

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At 72, you are deserving of happiness. Enjoy your grandkids. You have put your time in; let the professionals deal with it, and go when you are recharged and feel comfortable going. You have earned the right to have some happiness and enjoyment at this stage of your life. That does not make you a bad daughter.

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I dont think you should feel guilty.

My mother was in memory care and I stopped visiting very much. Had a bad childhood as well as estranged adult relationship. So, I felt no guilt. You owe your parent nothing other than what they put into you. It sounds like yours didnt put much into you.

I think society irrationally puts too much pressure on children of aging parents as though the children owe their parents something. People have children for their own selfish reasons. Status. To manufacture a sense of purpose. To fit in with their peers. To retain a relationship with their spouse. To procreate their genes etc. Its all FOR THEM. Children never ask to be born. They owe their parents nothing. Conversely parents owe their children EVERYTHING. It absolutely does not go both ways. People who have kids often forget this and mistreat their children when having them around is inconvenient.

Anything a child does for their parent should only be out of love for the relationship held and what the parent did for them.

A baby bird does not feed its dying parent.

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Thank you so very much. What you wrote is very thought provoking.

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It is okay to feel how you are feeling. No one said you’re a horrible daughter, you are saying that to yourself. You are doing the best that you can given a very hard situation. My advice would be to give yourself some slack, keep your visits relatively short and have a game plan before visiting. Try to redirect his conversation so that there is less opportunity for delusions to come through. Try to do something that make you happy after every visit. Hugs.

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So grateful for you taking the time to write to me. I do try to have thought of a couple of things to talk about when I do go to see him. He, however, is razor focused on relating his "hallucinations". I will keep at it.

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Your father, for all intent and purpose, no longer exists. Apparently when he WAS your father he was not even then capable of caring for you. You have a right to your own life. You are not a felon. You are mistaking G words. You have no connection with guilt; you are grieving. You may always carry grief for not having had a father, and for having at the end of your life been witness to the disintergration of someone who is gone, but still resembles your father.
There are ways to find mental health support out there; you will need to find them to help you move on with your life.
If you cannot any longer visit this person, then do not do so. He is receiving care. Whether you are there or not he will likely end his life as he has lived his life. Whether you witness it or not, you can do him no good. It is time to concentrate on your own life. I wish you good luck.

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He's not really your dad anymore, he's a man with some serious issues with his dementia and hallucinations. Not someone you would freely choose to associate with, right? It's very hard on a person.

I don't blame you for hating going to visit. It's hard. Don't try to reorient him. It's a losing battle.

And you do NOT have to go at all. Go when/if you feel like it. If it's too much, that's OK. Give yourself permission to go or not go.

If you do go, keep it short and sweet. When it starts to be too much, you can leave. If you only visit a few minutes, you've checked on him to make sure he's "ok". Bring him a snack or something and don't really engage with his ramblings. Just say vague things "oh, ok, sure". He's changed and it's no wonder it's hard to be around him.

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Thank you very much for responding to me. Everything you say is right. I will try to take him a small treat or snack and leave when the visit gets to be too much.

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