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

I just lost my mom on Christmas Day. My mom had Primary Progressive Aphasia and slowly declined neurologically over the past 10 years. She lost her ability to speak over the past years which was very hard to watch because she still had her cognitive mind. She eventually needed 24 hr care, but I was there every day, several times a day. I was constantly researching ways to improve her status and help her. Over the past 3 months her health started to decline more rapidly which had me on the phone with the doctor more regularly trying to find a way to help my mom. It did get to the point where she got quite sick and sadly was too weak to fight the illness so I made the decision to bring Hospice in. It was a hard decision because in the back of my mind I felt like I should and could be doing something to make my mom better. Hospice was a blessing for us. They gave us a booklet to read about the dying process and only then did I realize that my moms body had been starting to transition 3 months ago. She stopped eating solid foods and eventually even soft, and liquid supplements, and wanted no tubes etc. Even though Hospice was started I wanted them to do things to make her better. They explained why these things were not going to be helpful and reluctantly I understood. Hospice was very helpful in keeping my moms final days comfortable and were very supportive and a blessing because they took the burden of making all these decisions off of my shoulders. The last week with my mom was spent talking to her, telling her how much I loved her, talking about memories, and keeping her comfortable and peaceful. She passed peacefully and was surrounded by love. I have no regrets because I did everything and more for her over the past 10 years but I miss her terribly. My mind understands that she was suffering and is at peace now. My heart aches to have her back. I still have thoughts of what I could have done to keep her alive, but she (her body) was in transition of the dying process. It isnt easy but know you have done and are doing everything in your power to care for her the way she would want to be. This post has helped me so much because I thought I was the only one going through this. Sending prayers for strength and peace.

I have been there with my Dad, nothing prepares you. I wish there was an easy answer , for me personally I just asked God for guidance and strength. I had him taking Ativan once he reached that point of Not eating , you are honoring her choice.

I went through a similar issue with my dad almost three years ago. Wise people here assured me that no matter what I did, I would always think I could have done more. I didnt really buy into it at the time but now, looking back, I can see that I really did what I thought was best and sure, maybe I would have done some things differently but none of it would have changed the ultimate outcome.

I believe coming to this realization takes time.

Losing interest in food and slowly withdrawing is normal at this stage. She is not choosing to die. She is choosing to go on her terms. Feeding tubes an heroic efforts to get her to eat will only prolong her misery. It will never be easy to watch your loved one transition so it’s ok to not feel ok. Just know you have done all you can and love and support her wishes. Wishing you strength and peace during this time.

Imho, you ARE doing everything that you can, though it is perfectly normal for you to feel that you can do more. Prayers sent.

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.

Two weeks before my dad died from cancer he told me to prepare myself for his death. I begged him to keep fighting, which he did. He died 11 pain filled days later, and 35 years later I still feel guilty.
Tell your mom you love her, and that you want her to do what she wants to do. If she's tired and wants to go, she has your blessing. You will be doing her (and yourself) a huge favor. Sending you lots of comforting energy, and peace for your mom. Hugs.

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......

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.

I think it is a normal thing to think what you are, which is evidence of how much you care. You need to be kind to YOU. Some things are inevitable and hard to accept. Have you considered contacting Hospice? They would be able to help you possibly as a support. Your mother is making choices in her own way, and your supporting that is the best thing you can and are doing. It's hard to watch, but know your lack of doing more is actually a comfort most likely to her. She's home and not being hassled by so-called professionals. My guess is you're doing great even if you don't feel like you are. Take good care, as the stress from caregiving has the capacity to really do things to us physically we are unaware of. Sending hugs...

Remember this is your mother's decision, not yours to make. The absolute best you can do for her is exactly what you are doing, respecting her wishes, and showing love and compassion. I applaud you.

I remember when I was caring for my grandmother. We lived with her since I was very young and I looked to her as my Mom. I guess I actually had 2 mothers. When she got sick, I was thankfully able to come back home and care for her. It broke my heart to see her getting sick and I knew I would soon loose my beloved grandmother.
There's nothing anyone can tell you that can ever make it better to loose your Mom. You can only give you loads and loads of love! And spend time with her...talk with her, if she feels like that. I know she's weak, so she may not want to talk. Maybe just read to her, her favorite book. She only has to listen. Spend as much time with her as you can. That's the one thing I regret with ALL my heart. Because I had my husband and boys to care for in addition to my grandmother. Knowing now what I do, I wish I had put everything else on the back burner but her. It's been 30 years but I miss her so much! Though I know I'll see her again, I still feel guilty for not spending that time with her. So, don't let that happen to you. Keep doing what you're already doing...telling her you love her, asking her to join y'all, everything. And spend time with her. You'll be so happy you did.

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.

Be with her, love her, care for her, and 100% support what SHE wants--not what you want. It would be very cruel to force her to do "everything" and she ends up dying anyway; treatment can be extremely painful and cruel.

Let the guiding star be this one thing: Keep her comfortable, and honor her wishes.

---->>>Please do a preplanned cremation or funeral. Funeral homes will gouge you over your grief. Preplanning also has other advantages such as discounts. DO THIS NOW if you have not done so because when she dies you need to get a funeral home to remove the body fast. <<<<----- I got my mom cremated for under $1,000. A burial will cost $10,000 if not more and that means the cheapest one.

Life itself is a terminal illness and we are all destined to die. When I lost my mom I came to realize that more than ever. Life is more of an ordeal, and when mom died, her ordeal of living ended and she is in everlasting peace that pain and suffering is only reserved for the living. When we love someone, the price of that is grieving, and we grieve because we are still alive. I think of it this way: If I had the power to bring her back to life, it would be the cruelest, most selfish thing to do because she would have to die all over again, and the next time around may involve pain and suffering. When mom was dying, she did not suffer, and in fact it was the most peaceful death I have ever seen--hospice came over every single day to make sure she was comfortable and not once did they ever open up that emergency box. When she died, she opened her eyes and took two deep breaths and died. That was it.

It has been over a year and I am still recovering from her death I miss her so much. What you need to do is start becoming your own caregiver. I know my mom would not want me to destroy myself over her death, so I needed to get back to the pulse of the living because caregiving her for 15 years really did a number to my mind that every single moment from I woke up to going to bed was caring for mom. I completely lost my own identity.

I am now gainfully employed, and working toward my Master's degree. The stress of school took myself out of my own grieving and now I mostly complain about the next assignment and exam to my friends. And of course I complain about work. You know, normal complaints. And all the crap I have to do around the house and don't have time for anything.

You are doing all you can for your mum, and if she is not on hospice call her doctor and get her on it. They will supply you with diapers, ointments, and renew her routine medications and even a free hospital bed, hoyer lift, oxygen (they take it once she dies), geriatric chair...and I used them like a home clinic. They were surprised I never had to give my mom any narcotics or psychotropics, and she was always peaceful. I think she new inside despite her end-stage Alzheimer's she was loved and secure, and I thank God I let mom die at home and she did not have a single mark on her skin.

I still cry over her death. You never get over it. You learn to accept it, but never get over it. GRIEF becomes a part of who you are. I think also grief keeps us connected to loved ones that died. Because we cannot stop loving that person, that grief will never go away.

She is not choosing to die. She's letting nature take its course. Just accept her as she is and give her as much love, comfort and happiness as you can.

You have to understand it is your mom's life and if she is terminal then you just be there for her and let her do or not do whatever makes her happy.

She should be on an end if life care to keep her as pain-free and comfortable as possible.

Homecare123,
You ask "How do you be okay with letting someone choose to die?" It's not easy but here is what I've learned from my mother's and M-I-L's deaths. When a person is near the end of their life they stop needing or wanting nutrition. It is a natural part of the dying process. They are preparing to leave. There is nothing you can do other than offer comfort and love by being there. The rest is out of our control. You are a loving daughter and caretaker. As difficult as it is to let go, and believe me I would have given anything for my mother to get well, there comes a time when that is the most loving thing to do. It is also normal to second guess ourselves and think we could have done more or done something better. I beat myself up for a long time after my mom died with "woulda, shoulda, coulda" before I came to realize that I did the very best I knew how to do.

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.

Homecare123, you are both respecting and patiently accepting your mothers choices and her situation. Simultaneously you are inviting her to join and stay connected. You can't do more because you are doing EVERYTHING that matters.

I celebrate your bravery on your difficult road.

The serenity prayer helps me in situations like this:
God grant me the serenity to accept the things I cannot change, courage to change the things I can and wisdom to know the difference.

ive learned the only thing I can change is myself, my way of thinking and attitude. I cannot change others but be at peace within myself.

YOU ARE DOING ALL THE RIGHT THINGS. ❤️🙏

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.

When my father's brain tumor grew to the point where it ruined the quality of his life and there was nothing more the medical community could do for him, he accepted his journey was coming to an end, which made it a lot easier for my mother and I to accept it as well. He didn't want anyone taking heroic measures to prolong his agony in an effort to make US feel less guilty about something we have no control over ANYWAY.

Fighting death is a waste of energy. We're are all going to die anyway, whether we fight it or not, so why should your mother fight to live when she has a terminal illness which is exhausting her?

Hope, for me, lies in knowing that life is eternal, which makes ME feel better. The signs I've received from my father since his passing 5.5 years ago reaffirm that he's fine and in a much happier place now, so I'm glad his passing was quick and painless.

Wishing you the best of luck finding acceptance & peace with a difficult concept.

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.

Yep, each and every one of us is BORN with a “terminal illness”. The terms of that illness are different for each of us, and what we know or surmise of our own or anyone else’s “term length” is typically a matter of educated guesswork.

You have been able to offer your mom a selection of loving choices. That is a luxury that I haven’t had. My LO at age 92, had Covid TWICE, and I, at 76, am recovering from Covid now. I may not ever see her again.

My point is that you have done everything, with love, that you can. There is no magic bullet, no missing thought, no “term” extension except that with which we connect with each other. Be at peace.

Please don’t beat yourself up and don’t be so sure your mother is choosing to die. Dying is a natural part of our lives and it has a very natural process. It’s hard to watch in person, we often want to change or fix it instead of the discomfort of watching it play out. You can only use this time to enjoy her presence and reassure her of your love and support. You’re doing better than you think you are and I wish you both peace in the journey

Teepa Snow has a video about the difference between giving up and letting go that I found helpful
https://www.youtube.com/watch?v=mNJxq4J5kYY

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.

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

I live in a rural area and my mother wants to be home with us. We don’t have hospice services where I live. We have a weekly visit from a nurse and a biweekly with her pcp. Palliative services are available via telehealth. I’m told palliative and hospice will be the same for her right now.

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.