Does anyone ever feel guilty about wanting this to end?

Posted by tracidw @tracidw, Oct 1 8:48pm

I love my Mom deeply. She's in a memory unit getting palliative care and going downhill quickly. She has Lewy Body Dementia. Losing weight, eating less, sleeping more. Needs help with ALL daily activities and totally incontinent. She sees and talks to her parents who have long ago passed away, even sees my brother now who died last year.

Part of me wants her to die sooner than later. It sounds horrendous to say, or write. I love her. I visit and sit with her. And I cry a lot afterwards because she's such a small percentage of who she used to be, I feel guilty about my feelings even though they logically make sense to me.

What helps cope with these feelings? I miss her even when I'm gently putting lotion on her hands because soothing touch and something that smells good can be pleasant. I want to do anything I can to make what little grasp of reality she has left to be good. It hurts to lose someone slowly but it's becoming more rapid.

It was not her desire to live totally out of it - not being able to use the bathroom by herself, and a hundred other things that would mortify her - stuff she would NEVER have done. Just sad.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

I wouldn’t describe what I felt as guilt. I think it’s normal to be sad a loved one has a poor quality of life. If they aren’t suffering and have a good quality, it makes a difference. It’s difficult to see someone suffering.

REPLY

Erase that guilt (easier said than done).
You just want your Mom to be in a good place and she's not, so you wish her suffering would end, and that is your empathy. Knowing your Mom would not want this life is a very human reaction. Give yourself permission to be human.
Our reactions to this awful change in our loved ones shows us how human we are, and can surprise us. When my husband had an MRI I remember feeling guilty that I wished they would find a brain tumor, because that can be fixed and I'd get my husband back. That did not happen and his dementia decline continues.
Feel your feelings, let them out, be human.
Take care. 🫂
All the best.

REPLY

Bless your heart..it is so very hard.. recently my sister messaged me my Mother was not long for this world..(having had a husband on hospice with cancer 14 years ago I knew what that meant) so I actually prayed she would go and go too Heaven peacefully.. and she did...my heart goes out to you ..sending prayers

REPLY

I'm so sorry you are going through this with your poor Mom! It is not guilt to want a loved one to be out of pain and confusion. My husband died in 2024. He had lung cancer. Towards the last he was very uncomfortable with severe breathlessness, confusion sometimes and he had to have help going to the bathroom also. I literally asked God to just take him in his sleep. I wanted my husband to be up in Heaven with God and Jesus and out of all the uncomfortableness and pain. I didn't want to lose him. I loved him dearly and still do. I miss him terribly. But I wanted him healthy and happy like he used to be. At the point he was at, Heaven was the only place where he could be that way again. My husband didn't die in his sleep but right in front of me when he fell on the living room carpeting. We got to say we loved each other and then, he was gone quickly. I said a thank you prayer to God.

Pray with your Mom. Tell God how you feel. Also tell your Mom how much you love her and tell her often. There will be a time when you won't be able to tell her that. My husband and I told each other often how much we loved one another and I'm so glad that I have those memories of those last days together! You are to be commended for the good way you are taking care of your Mom! Putting lotion on her hands is such a sweet touch! You are a very good person!

This is a hard time for both of you but keep in mind that even if your Mom goes to Heaven before you, you will be reunited with her in Heaven when you die. It's in the Bible. I will say a prayer for both of you.
I wish you the best.
PML

REPLY

I think the suffering is more the loved ones who visit. With my brother, the last 2 years he didn't know me, before he would recognize my voice when I visited, then no more. He was well taken care of, but suffered numerous aspiration pneumonia episodes/hospitalizations, as he couldn't swallow any more. He slept maybe 22 hours a day, other than when he was sick/hospitalized, I don't think he suffered. I suffered seeing him, knowing he was dying and I was losing him.

REPLY

Try to accept the fact that the human body wears out. Instead of 'suffering', try to appreciate the time he was healthy. It is not about you.

REPLY

Re: post abot guilt in wanting the gilt to end.
This is a normal feeling, it is one that finds it's way into our minds and hearts in the times of death and long term illness.
It is felt by everyone for different spans of time. God hears us and understands..it is part of the cycle of life when someone we love is suffering, when we can only do but so much in one area of caregiving, and not enough to stop the process. So we blame ourselves for feeling worn out, watching the progress of the illness and the way our loved one is changing.
I can tell you that guilt feelings will go away once acknowledge that you are doing all yur can possibly do for your Mom. Remind yourself that you are in a roll reversal, you are now the Mom tking care of her. I bet she often smiles when you are near or doing something for her. As you work with her, no matter what you are doing for her tell her I love you, give her a kiss for no particular reason...just sit and hold her hand. You can't imagine what good medicine this is for BOTH of you. Every night, tuck her in, stroke her hair, say Good Night with a hug --- then sit for a few quiet minutes holding her hand. Now you feel any guilt melt away. This is a special time of guilt free bonding. How can you feel guilt when you are telling her in so many ways how much you love er and you are with her in love and always will be, no matter when it ends.
Honestly, believe me....all of us feel or have felt some degree of guilt at wanting this to stop, get our lives back to what wse thought was normal....now we hope for the new normal to come. Sometimes we dream of what it will be like at that time...then we get even more quilty for feeling this way. Let it go....replace the sadness that guilt brings with the joy and love at beisng able to show your love, to do the things that make you so tired that often at the end of the day you can't sleep and dread for the clock to strike day break.
I use my tears to cleanse the greif, anger, sadness...all the negative feelings from my heart and soul...it is washed away until the next time...but for a while I feel that I can cope, Mom (in my case my husband) knows how much I love her/him. We all need "tear time" in order to get our equilibrium back. Let go and let God, he doesn't want you to feel this way. She is in His hands, He is holding her...and you too....work together, reach out of everyone here and talk out your feelings...we are great Listeners. We undrstand, we help one another over the stumps in the road.
I and others will be praying for you and your Mom...both of you will find peace and comfort in Him and we will help.
Blessings to you both.

REPLY
Please sign in or register to post a reply.