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Homecare123 Asked January 2021

Worried I didn’t do enough. How do you cope with the inability to do more?

My mom has been gently fading this past week. Every day I wonder if it is the last. Her doctors have all confirmed it is terminal and her refusal to eat or be tube fed or even have an IV doesn’t give them or anyone much hope that she can turn things around. I get it. I don’t pressure her at home. I always offer her what we are having. I always ask if she wants anything. She says no. It seems like the nausea makes her avoid food and avoiding food gives her nausea and she doesn’t care about breaking the pattern. I tell her I love her. I have connected her with as many family members I can think of. I don’t know what else to do. My mind keeps telling me that there must be SOMETHING that will give her a will to live. I care for her 24/7 for the past 6 months- once I found out she was terminally ill (something she had been hiding from me for a while I think). How do you cope with the inability to do more? How do you be okay with letting someone choose to die? Please no one tell me about heaven - it doesn’t make me feel better.

Grandma1954 Jan 2021
We are all born, we will all die.
Fact of life. Does not make it any easier.
I "discovered" taking this journey with my Husband that the tears I shed were not for him but for me. I was (getting teary here) going to miss him, I was the one that was loosing the love of my life, for me to want him to stay, to not die was selfish of me. He was the one trapped in a body that was no longer his, no longer the vibrant, laughing, smiling man I fell in love with. Lying on the bed was a shell of what he was. He would not have wanted to live that life any longer.
I told him that I loved him, that I would be alright. I held his hand.
It is difficult to watch your loved one die. But caring for him was one of the most special things I have done in my life. I would not have wanted it any different.
I miss him. But he is still with me. When I do something in a way he would not have approved of, I hear his voice telling me so. When I cook a meal he loved I can feel him with me. When I look at the grand kids he is there.
Your mom will always be with you. When you fix a meal she taught you how to make. When you look at yourself in the mirror a bit of her will be there. And her voice will be there to guide you when you make a decision. I am sure your mom hid her illness from you just as my parents hid theirs from me. Your mom did not want to cause you any more pain than you already have. Isn't that what parents do, carry burdens for their children? (read Footprints in the Sand)
As long as you do your best given the information you have you should not question if you could have done more or done better. That is all anyone can ask of another.
(took me longer to write this than it should through tears. Grief is different for everyone Cdrickler's post below closes with a saying that has been taped to the wall above my computer for 6 years and it is so very true. Just know it is a road we all travel but the trip is different for all of us)
Rest well, you are doing the best that you can.
DILKimba Jan 2021
Beautifully said. ((((HUGS)))
AlvaDeer Jan 2021
I am a 78 year old retired RN, Homecare123. I have come to see death as my friend. Suffering, and the torture of both physical pain, and the mental pain of those who cannot let us go when we are ready to go? That is not my friend. That is my enemy. Your acceptance of your Mom's willingness to leave will reassure her, give her strength for this journey she must make to peace, and reassure her you will be OK.
When my brother died in Hospice care at age 85 I felt only relief for him. The pity was for myself in his loss, as for all my life he was Hansel to my Gretel in any dark woods. But upon his death I knew he would suffer no more. And I would not live in terror of his suffering.
You are doing this perfectly. You are offering comfort, and what you can provide, and your LOVE most of all. Reassure her you will be OK, and that she will be with you every day you live. TRUST ME< that is the TRUTH. Celebrate her life with her. Remind her of WONDERFUL things you remember. Tell her you will treasure memories of times she allowed you to care for her.
She will never be gone from you. You will be stuck, like me, remembering her and wanting to tell her about an exquisite magnolia you saw that day. But you can write her notes in a scrapbook, decorate it, put in photos, and remember that for you she will always live.
My heart goes out to you.
I am an atheist. I don't believe in heaven. So I won't tell you about that. I WILL tell you about peace. I will tell you my Dad in his 90s told me he was so exhausted. He wanted only peace. It was so hard for him to make himself get out of bed. It was a torment to him that he had to go on. I will tell you about peace. I will tell you about the inevitability of death, I will tell you about memories. Annie Dillard has a quote I love.
"We live our lives as though hundreds of thousands of generations had not come before us, and as though hundreds of thousands of generations are not yet to come." That's the truth. We are a blip of time, a particle floating in the sun. Then gone. But what we FEEL is profound as anything I can think of. The LOVE. It is so amazing. You can mourn. You WILL mourn. You must mourn. But when you do, let your tears wash you clean, lift up your head, feel the joy of what you had and the joy of what can never ever be taken from you. THAT will be my hope for my daughter. We speak often about death.She is 58. She is raised up strong. Will be OK. I want her to have nothing left of my but my joy of her, and my wish that her joy lives on.
DianneKK Jan 2021
What a wonderful, heartfelt & inspiring message! Really makes sense. I deal with thoughts similar to the OP sometimes concerning my mom. Watching someone slowly or even quickly fade away, is never easy. Especially a parent. But the part of knowing they aren't suffering anymore is a place of peace. You know they have found a peaceful place of rest and now the journey of personal healing begins. Having support on this forum will still be a place of comfort and to share all the feelings when ready.

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Cdrickler Jan 2021
Precious spirit, just love her as you always have. LIVE your life.
Do as you would without the illness, the weight of a terminal illness
Play music! Dance! Bake! Share! Be in the moment, with your mom. Trust that she will take what she needs from that. It wont be easy.
Cancer just claimed my dad. It was extremely hard to carry on as if
nothing was wrong-no impending doom. Don’t be ashamed to cry.
Share those feelings. We all want to know we will be missed.
Perhaps her distancing herself, shutting down, gives her control over the situation, or makes it less difficult to leave.
It’s all so unfair. Isn’t it? Eve and the apple, Pandora’s box, who can we blame?
Let those emotions out!
Leaving, saying “goodbye”, letting go, is the most difficult thing any of us have to do. It’s forever and ever.
Escaping physical pain is the only reason we embrace it.
“Grief is not a sign of weakness,
nor a lack of faith,
it is the price of
love”. - Anonymous

Tiredandsad Jan 2021
I am experiencing this right now with my father. I am grieving as if he is already gone. Could I have done more or have done better. For 2 yrs since my mom died he lost the will to live and the things you described are the things I experienced too. It has just been within the last few days that I was able to really think about what if I was in my dads place... and my grief of losing him and trying to hang on to him by trying to get him to do the things he needs to stay alive. If I were him, I would want to go to sleep too. Sadly, he is nearing his last moments quickly just within the last few days and he is at peace and when I start to agonize over my loss to come I put myself back in his shoes and I can find peace too. Maybe this can help just a little.

BarbBrooklyn Jan 2021
If your mom has a terminal illness, your best course of action is to call for a hospice evaluation.

Have her doctors not suggested that?

Hospice will assist in keeping your mother comfortable.

NeedHelpWithMom Jan 2021
You have done everything that you possibly could.

Your mom knows that she will die. She has accepted it.

It’s hard for us to watch them suffer. It’s hard for us to say goodbye because we will miss them. So, basically, it is a mixed bag of emotions.

Allowing those we love to die with dignity is a tremendous gift.

She knows that you love her. She doesn’t need anything more than that. You’ve already given her the most important thing in life.

jacobsonbob Jan 2021
Homecare123, decline before death is natural, and there isn't really anything you can do that's going to slow or change the process. You're doing all you can to make this process as pleasant as possible for your mother, but you can't make a significant difference as to how long she lives, and in any case using this time to remind her of your love for her by word and by deed is more important than the length of time she remains alive.

missingjim Jan 2021
I understand how you feel. My husband passed two months ago and my mother, two years ago. I felt the same way with both of them and now I regret pushing too hard. I wanted them to live so bad that I was forcing my husband to eat when he didn't want to and I was pushing my mother to try harder because I wanted her to live.
How I wish I had let their last days be more peaceful without me thinking I knew what was best.
I really was trying to help and I'm sure you are too but sometimes what we think is helping is making things harder for the natural progression of their life.
Of course, love her as much as you can. Offer her all that you can. Then let her live and leave as she chooses. It's the best thing you can do for her.
May God help you through this difficult time. It is a season that will pass and one that you can look back on knowing you made it as comfortable for her as you could.

nymima Jan 2021
We do what we are capable of doing. I over-did it in caring for my mother and I was diagnosed with cancer 5 yrs into my caring for her. I am struggling to get through my cancer treatments and meanwhile, she is still here - total of 10 yrs. and counting. I had to pull back, or I never would have made it this far. We cannot put ourselves into helping them to the point where we lose ourselves. I almost died. And then who would she have? Now I have help for her and if she ever gets bedridden, I will take other steps. But it’s not going to be me changing her bed or her diapers. That would be the end of me. She is almost 95 yrs old......

Suntannca Jan 2021
I lost my mother in April 2020. She had Parkinson's and there was no cure. I was her caregiver for 10 years, and she was bed bound for 3. During those 10 years, I was always able to find solutions to adapt as her health slowly declined, always researching to find resources or equipment to aid with her care. I was told that during the final stage of Parkinson's she would have difficulty swallowing, I thought I was prepared for this because in the back of my mind I too thought I could do or find something to put in place. One month prior to her passing, she began to show signs of this so I began my search to find a way to help her swallow, but the decline was so rapid that I had to come to the realization that no matter how much I loved my mother, there was nothing more that I could do save her. I made the decision to call hospice care and they were truly a blessing. They made her final days in her home as comfortable as possible and comforted me by letting me know that her passing would be a natural process, pain free and peaceful. She was my heart and I know without a doubt that I did everything I could for her during those 10 years, and that brings me a sense of peace. No regrets because I truly did all that I could. Know that you will come to this realization too. I hope this helps.

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