So much guilt.

mkgford · July 16

My mother passed away on June 15 20216. I would go see my mom every day. I would take her out of memory care and into the assisted living side. We would have dinner in the restaurant there or go play bingo or go to the movie theatre. It was really hard to keep that up but I did it. She started to not want to go out and then started to not want to even come to my house. She stopped eating and got down to 59 lbs. Then the falls started happening I moved her from facility to facility she kept falling and declining. I decided maybe a group home she would get more one on one care since it’s less people to care for. Thought it would be ok cause she stopped wanting to socialize at this point. Then the fall that broke her hip came. She survived the surgery but then the hospital said with her weight and Frailty, advanced dementia , really bad kyphosis' she would not be able to get through the rehab therapy required. So I had to make the decision to bring her home on hospice. I took FMLA from work and cared for her by myself at home. She lasted a little over a month. It was a lot of work and took a toll one me. I still feel so guilty. I don’t think that will ever change. I dreaded going to the facilities, dreaded the constant panic she lived with. She didn’t forget people but her life was always full of anxiety. The facilities would tell me she spent the whole day calling my name. It just would break my heart. I miss her so much. I am so very glad I cared for her at home in the end and I thought it would help a little bit with the guilt. But it’s still there. She has only been gone a month so I hope it will eventually get better. Thanks for listening to me go on and on. This disease is the absolute worst! Anybody else have this guilt they can’t seem to shake?

Eloise0304 · July 18

I felt and still do feel guilty for decisions I made for my spouse. He has been gone for 10 months, but it still feels like just a day ago. I finally found a grief support group close by, and learned so much from others. One thing that stood out was that guilt doesn't get you any where and can stop you in your tracks.

CMarlene · July 18

I also share a feeling of guilt about being the person who was responsible for admitting my younger sister to her AL/Memory Care (both) facility. She is 73 and not married. I am 76, married. There was no one else in our family left to do it. She was diagnosed with Alzheimer's and depression last week. She was not making it on her own and I knew a disaster was just around the corner, so I did it.

Mgkford, your mother is now happy and healthy again in Heaven. It was obvious that you were a wonderful daughter to her; you should be so proud of the great love and care you gave her in her journey. She wouldn't want you to feel any guilt at all. It will get better, as grief most always does. It is time to take excellent care of YOU now. Don't hesitate!

psg712 · July 18

From your description, you did a wonderful job taking care of your mom is what is essentially a no-win situation. Now that she's passed, you have more time to second guess yourself. But that will only hurt you and cannot help her. Be gentle with yourself. You did the best that you could for her.

My mom died last month too. You and I are both early in the grief journey...although dementia gives plenty of grief along the way. I pray for your peace.

dcare45 · July 19

My heart goes out to you. It sounds like you did everything you could to help and comfort your mother. Try to remember the good times with your mother. I imagine that won’t be easy in the short term but please don’t let the guilt hurt you for something you could not control.

CindyBum · July 19

I have struggled on and off with guilt since by DW died nearly 6 months ago. I'm sure that will continue for a while. I'm hoping that knowing I gave her all I had in me to care for her at home until the end will overtake the guilt I felt about every fall. She was at home. I had caregivers. I had hospice. She still fell, even with us following her around the house constantly. It only took one quick look away and down she went, like, "TIMBERRRRR!". Her last fall, she never got up again and then it took her 11 days to pass. It was the most awful year of my life.

At one point, a hospice nurse told me that you just can't keep people from falling 100% of the time when they get to that point. That has helped me a great deal and I do find the guilt is much less present than in those first months. We all took on a impossible job that had little upside, exhaustion, stress and ton of guilt. And we all did a damn fine job of caring for our loved ones. That's just the truth. That's you included! You offered amazing care and you will find yourself recognizing that. You gave it your all and that's all that matters. I know I did the same.

Big hug.

Cindy

jehjeh · August 3

I'm so sorry for all you have been through. There really is no winning with this disease. We all do everything we can, usually denying our own needs, and still come away feeling guilty for not doing more.

Over the years I cared for both parents, a sister, and a husband with dementia. (Not to mention numerous pets) I still feel guilt over things I did or didn't do for each of them. I have to remind myself of something a very wise person once said. We make the best decisions we can, every day, with the information and abilities we have.

One year after losing my husband I have to remind myself of this less and less. I wish the same for you.

Victoriaredux · August 25

There is sadness , loss and there is guilt.

Guilt is for when you have done something you knew or should have know had a high likelihood of being bad for another. Your gentle child wants piano lessons - you sign them up for volleyball instead and they get their face slammed.

I think we feel "guilt" around dementia decisions because if there is "guilt" then there was a choice , we weren't basically helpless. But we were. That's depressing. Humans want to think there a solution .

Instead here we are , we survived. Don't waste your time now- you aren't on 'hold' anymore. Take care of you. Your LO would want that .

[I'd heard that elder falls are generated inside the body- not an external trip and fall - the bones don't line up or the damaged brain sends out confusing or inadequate movement signals and that throws the PWD off. Can you get into another's brain and rewire them- nope. So no guilt]

So much guilt.

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