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Overwhelming guilt- not shared with anyone
Posted: Saturday, November 14, 2020 1:37 AM
Joined: 11/14/2020
Posts: 5

 Not a good day. Missing my dad and guilt is high. I can’t talk my fam about how I feel. My dad passed away in a hospital by himself. He was placed in a home for the safety of my mom and my dad. He put his oxygen tank on the stove and turned on the stove, which was the reason why we placed him 

In a home, which was extremely difficult. We found him a home in January and he passed away in June, 2020. Covid ended our visits in March, except for FaceTime. He hated being there and asked/begged repeatedly to come home 
Or live w me and my family. I hated saying no. He began falling often and lost 20 pounds in 30 
Days. His last night he was taken to the hospital for a fall. I spoke to the staff at the facility, who said he had a good day that day, but as a precaution he was taken to The hospital. I spoke w him right before he was taken. He said he was short of breath.m and to call my mom and call him back. His falls and ER visits were frequent, about 2 times per week. My guilt will never ever subside. I didn’t call him back for 2.5 hours. I was transferred to the ER doctor who told me he passed away about an hour ago. I will NEVER EVER forgive myself. That was his worst nightmare was to pass away without any of us there ( my mom, me, my husband and our 3 daughters.) I will NEVER forgive myself. I have not been able to speak to anyone about this. My dad was the best dad ever and I wasn’t there for him.
Posted: Saturday, November 14, 2020 2:39 AM
Joined: 11/14/2020
Posts: 5

I feel like such a crappy daughter, for many reasons. Even though he discussed w my mom and me about a month prior about it being time to be put in a home because his Alzheimer’s was getting so bad. When it came that time, he begged to come home or live with me and my husband and 3 daughters. I feared he would have done something to jeopardize his/our lives unintentional, I just couldn’t convince myself that was the right decision. He was never ever violent w my mom, except the last couple of months prior to being laced in a memory care facility. That was shocking and not like him at all. I was afraid of him finding keys and taking off in his truck, if we would have allowed him into our 3 bedroom home, which was next to impossible. I was extremely close and loved him so much. I am having an extremely difficult time accepting my decisions and the loss of him. I wish I would have made different decisions and he might be still alive today. I feel like the worst daughter ever and miss him so much! I am struggling with his loss
George K
Posted: Sunday, November 15, 2020 11:59 AM
Joined: 12/16/2011
Posts: 2823

My dear, dear Wolfpacmom!  I've read your posts several times.  Here's my response to what you wrote:

You are a good daughter.  You are not a perfect daughter; you are a good daughter.  You are a good wife.  You are not a perfect wife; you are a good wife.  You are a good mother.  You are not a perfect mother; you are a good mother.  You are a good human being.  You are not a perfect human being; you are a good human being.  You  do seem to me to be perfect in one respect, though; you are perfect at  feeling guilty even though you did fulfill your responsibilities to the best of your abilities at the time.  There's a saying, "When we know better, we do better".  Wolfpacmom, you did the absolute best you knew how to do at the time.  Alzheimer's is a terrible disease all by itself.  Add in the complications and restrictions added by the current COVID-19 crisis and what you were facing was impossible to do, you could not possibly do what you expected of yourself.  One of the five stages of grieving is denial, I think one of the things you are in denial about is that you were a good daughter.  I think you made the best decision for your dad, your mom, your husband and your family.  The only wrong decision I see that you made is that you choose to feel guilty because you tried to protect everyone, a goal that was unattainable, an impossible task to set before yourself.  I like to misquote people, one of my misquotes of William Shakespeare is "To thine own self be kind".  All I'm saying to you is be gentle with yourself, after all is said and done, you were the best daughter you knew how to be at the time.  In my opinion, it's time to be your own best friend now.

Posted: Monday, November 16, 2020 3:10 AM
Joined: 11/14/2020
Posts: 5

Dear George,

Thank you so much for the kind words. I appreciate your response. However, it is an extreme pain that I think about on a daily basis and will be forever be engraved in my head and heart that I failed my Dad at the time he needed me the most. I am unable to talk to any of my family members or friends about this, so I guess that is why I am reaching out to this board. Thank you all.

Posted: Monday, November 16, 2020 7:25 PM
Joined: 2/24/2020
Posts: 158

I can only give you my support as I know it is very hard. Have you thought about grief support. A person to talk to other than family. 

I am going to start in Dec. through a local hospice agency. Having lost my wife in October, I am a mess. I miss her so much. I am up and down. Torn between she no longer has such a terrible disease to just broken hearted and despondent with no motivation as I miss her so much.

Take care of yourself is all I can say. No one is perfect and the COVID crisis caused so much disruption.

Posted: Monday, November 16, 2020 10:40 PM
Joined: 4/1/2014
Posts: 5213

I am sorry for your pain and heartbreak. The situation you were placed in due to the nature of your father's disease and the COVID 19 crisis makes it hard to know what is best to do. I also felt I let my father down during his last days alive so I understand your feelings. I knew I could not live with the guilt as it would begin to affect my mental, physical and spiritual health, so I sought ways to remove it by trying to understand the nature of those feelings. I realized they were self-imposed and saw that they could be used to teach me a life lesson and help me become a better person.

 I knew my father was no longer suffering and I felt he was not carrying any anger or disappointment in me- how could in the presence of Divine Light and Love? If he forgives me my shortcoming, I could forgive myself, too. 

That is how we heal. It takes time-and it will take time for you-but be patient and kind to yourself and even though it feels like you cannot forgive yourself now-plant a little seed in your mind and heart that there will come a day when you can and it will come true.

 You have been through a lot these past months. If you want to talk, make me a Connection and I'll give you my phone number and we can chat.  Take good care!

Posted: Tuesday, November 17, 2020 11:55 AM
Joined: 2/15/2017
Posts: 1

I'm so so sorry.
Posted: Tuesday, December 8, 2020 5:37 PM
Joined: 11/22/2019
Posts: 399

I missed your post when you first joined the forum.

I grieve with you.  I feel I can understand your guilt.  I feel guilt too.

It was much more harsh guilt nearer the time my mother died in early March 2020.

It has been alleviated a bit as I shared with others my reasons for feeling guilty. These people acknowledged my experience and also helped me look further beyond the immediate situation.

My guilt comes from doing my very best for my mother and knowing it was not enough.

I would have had to be four people and need no sleep in order to provide what I think of as the best care available.

And have outside help as well.

The illness requires so much more than is often available.  That is a lack in our medical system and insurance.

Plan B was placement, and that is what I ended up doing.

It is a very sad situation when choices are limited in providing care for a family member with dementia.  The illness is very hard on those with dementia.  It is very hard on those of us caring for them.

There is fear on both sides, sorrow, misunderstanding.  I hope there were some good moments and times during his progression.  Times of connection and love.

If you have the opportunity, I recommend perhaps choosing a good therapist with experience in helping people who have lost loved ones with dementia.

Guilt is complex.  It has deep roots and feeds on real and perceived flaws in how we have done things.

I feel your father's outcome is not the result of you being a bad daughter or a bad person in any way.  You are a complex person whose father had a terrible disease.

It is extremely sad and shocking for you to learn he passed while you were unaware.

I thought my mother had a few more years.  However, her dementia absolutely galloped those last six months.

I have accepted responsibility for things I could have done better, or with more grace, or faster or slower.  I have the benefit of hindsight.  In the moment, I had much less information.

Though I do not think my mother (with her personality) would forgive me for not doing it all very well, I have forgiven myself some things.

I really did all I could.  I gave it and her my best as an ordinary, complex and flawed human.  

I give myself grace for my intentions which did not always help me get the result I wished for my mother.

I grieve for her very troubled life, admire how she survived almost impossible circumstances, succeeded by sheer will at times.

I grieve for her fright and pain and the frustration from being unable to care for herself. 

I grieve that this disease took so much from her.  Took her from herself.

I try to remain cognizant of the lack of full support for people with dementia.  My failures were rarely all my own.

I believe you did your best.  With your best intentions.  I think it is possible you had less agency than you remember.  You had fewer resources.  You could not know the future.

I hope in time you will shed a bit of guilt.  Guilt can put a barrier between us and those we love.  It can add stress that affects you physically.

I doubt your father would want you to punish yourself.  

Deb for Aya
Posted: Friday, December 11, 2020 8:39 AM
Joined: 12/11/2020
Posts: 3

I cannot imagine how horrible that you weren't with your dad when he passed. I hope and pray that you can find peace around your guilt. My mom passed away in 2018 and sometimes I thought she knew who I was, others times I wasn't sure. I choose to believe she knows how much I love her, and how much I miss her. I speak to her picture every morning and every evening, I believe she hears me in Heaven.
Deb for Aya
Posted: Friday, December 11, 2020 8:41 AM
Joined: 12/11/2020
Posts: 3

Kinds words for her, thank you!
Posted: Friday, December 18, 2020 9:50 PM
Joined: 2/6/2018
Posts: 646

I'm glad you posted, Wolfpacmom. I think I know how you are feeling because I'm feeling the same way. This is the first time I've heard from someone else who had a similar circumstance and is overwhelmed with guilt and pain as a result. I was my Dad's primary caregiver, living in the same home with him for 2.5 years. In March of this year when I was desperate for a break, I placed him in a respite facility for 30 days and I flew back home to the house I left when I first went to care for my Dad. Because Covid exploded soon after, I decided to extend his stay because I was assured he was safe where he was and I didn't want to travel home because of various covid concerns etc. After he was there a little over 60 days he had a totally unexpected health event that sent him to the ER. It wasn't covid but it was still a total surprise and kind of a mystery to everyone. I flew back immediately but because my state required me to quarantine for 14 days, plus the hospital wasn't allowing anyone to visit, I was stuck in his house while he was in the hospital for 10 days. It was awful in so many ways. He was all alone and he died there. I actually yelled out in emotional pain after getting that awful call.  I can't even say more than that, I can hardly let myself think about it. But I will say that the guilt and pain about those circumstances is overwhelming - I should never have left him in the first place, I should have come home sooner, If I'd been caring for him this might not have happened and at least he wouldn't have died thinking he'd been abandoned (which I'm not sure he did, this is just part of the tortuous story I tell myself...).  

Anyway, I just wanted to let you know that someone else understands, and I think I also understand the feeling that you can't discuss it with anyone else. It's helpful to me to read the responses you received here. Sometimes I imagine what my Dad would say if I went to him with this issue (which is what I really wish I could do). I can instantly hear what his response would be and it's all love, reassurance, understanding, and gratitude for everything I did for him. But then my own internal ugly unforgiving harsh voice breaks in. I think it's that voice that is feeding the guilt. When I look at your situation I feel only compassion for you that you had to suffer this kind of ending with your Dad. I do not see anything that you did wrong, only a very loving daughter doing her best and tragic circumstances just happening as they do. I think finding self-compassion can lead to the self forgiveness that we really need. 

Posted: Wednesday, January 20, 2021 12:30 AM
Joined: 11/14/2020
Posts: 5


It is impossible for me to finish reading your post without sobbing. I feel so terrible for the pain you are going through. I also wonder what my Dad would say to me right now. He has always told me how proud he was of me. I have a difficult time believing he would be saying the same thing right now. I want there for him when he needed me the most. He died alone. I won’t ever forgive myself for that. .....ever!  I wish I could bring g back time. I miss him so very much.

Posted: Tuesday, April 13, 2021 12:42 PM
Joined: 11/14/2020
Posts: 5

The emotional pain is still so unbearable of losing my Dad. I miss him so very much. I wish I can spend more days with him doing things he loved to do. He loved to fish. I would do anything to bring him back and take him out in his fishing boat. I hate that I took so many things for granted. Most of all time spent with him or just phone calls.
Posted: Tuesday, April 13, 2021 1:49 PM
Joined: 1/23/2017
Posts: 1328

Wolfpacmom, I can feel at least a part of of that guilt, and wishing that we can go back and do over all of those things we took for granted when our loved one was alive.

I tell myself that I am so blessed because my Barbara was able to stay in our home right up to the time she passed out of her life. But you know, that blessing came with a number of  costs, both to Barbara and to myself. While the dementia invaded her mind, arthritis, and then Parkinson's disease invaded her body. Perhaps she would have gone for a walk and fallen on the sidewalk, or tried to drive the car and gotten into a wreck - if only her body would have let her. So, I am thankful that she could not do those things, but at the same time, I was forced to watch the woman I had loved for so many years deteriorate in her chair.

Her world became the bed, the commode, and the chair. In the end, it was only a hospital type bed, and not even in our bedroom, but in the living room. One of her last complete statements to me was about missing being able to sleep in our bed together.

That broke my heart.  The final words out of her mouth came after I had asked her how she was doing, to which she whispered, " Not very well . "  Two days later, and she was gone.

She always told me how much better I was than her previous two husbands, but while I appreciated that thought when she was alive, I now think to myself  of how much better I should have been - could have been !

I have guilt. Ok, I have lots of guilt, and it does haunt me, but I remember that Barbara loved me. Even at the height of her downhill spirals, she would tell me, just before we went to sleep, that she loved me. How can I disrespect that love of 38 years by allowing my guilt to rule me ?

All I can do is remember, and do my best to be a better man than I was.