My mom died tonight at her assisted living facility.

Question

My mom died tonight at her assisted living facility. She was in pain, and I ran to get help. I got into a 15 minute argument with the nurse trying to get them to up her level of morphine, but by the time I came back, she was gone. I feel so guilty. I want to throw up and pull my hair out and rend my clothes yet, I’m just sitting here at home, in shock. I am sad, but was also so fearful of further decline for her.

With her passing, something comes to a close for me. 10 years of being the primary point person/ POA/caregiver for her and my dad ( dementia/Parkinson’s). I simultaneously feel I made so many mistakes, and that I should have done more, and am exhausted when I look at what’s left of my life after the time consuming work of moving them, caring for them, then finding them a facility, then advocating for them, handling things like doing their taxes, visiting every week, etc etc etc. A million times feel they suffered from my ignorance. I regretted I was not a clinician, because I felt so inept navigating the health care system.

So I came to tell people who I know would understand when so many didn’t and gave me bs platitudes and empty promises. And to say thank you. I’ve been a long Time lurker who has favorited so many of your posts because they have been a life saver to me. Thank you to you all. You, and this community are a painful blessing. In the silence of sitting, and my grief, I pondered on gratitude, and this forum flew up like a butterfly in my mind. I realized this, and thought I’d say so.

Bevel2 · Accepted Answer

Hi Anitanita,

You are a wonderful human being and you gave 10 years.
Mom might have been waiting for you to leave the room; to pass. That argument might have happened - no matter what you did.

Guilt is one of those crippling emotions that we or others impose upon ourselves.
PLEASE know that in 10 years: if you didn't make any mistakes.... then you were not doing anything.

I am very sorry for your loss.
I hope you can find a way to live now for yourself, now. I think that you have given so much already. Please, take care of yourself.
-Bevel

MonaMona · Answer

I am so so sorry for your loss. Saying you did your best may not be as reassuring to you as is meant. But go with the flow of grief. Everything is still so so very raw. In time you will heal darling. Sending love, cuddles and kisses.&#127803;

ZippyZee · Answer

There's nothing you could have done.

Take the time you need to grieve.

SunPuddleSoaker · Answer

I love you. I love you. I love you. Etc. etc...

Mascha · Answer

Yesterday was my first time visiting a forum of this kind, and this was the first post I&#180;ve seen. I was scared, but I clicked to read it. A big thank you to everyone for all your emotions and your pearls of wisdom. I admire your power, Anita.

againx100 · Answer

Sorry for your loss. And that the nurse argued with you for 15 minutes. Many times, people wait until they are alone to die. It was obviously time for her to go, so I really don't think you should feel guilty about anything.

Of course during caregiving, we make mistakes. We could have, should have done more, done it better, been nicer, been more patient and on and on. But we are human and have our own needs, needs of our spouses, children, grandchildren, et etc. Life is complicated.

Sjmcnd · Answer

So sorry for your loss. Your story resonates so strongly with me and I can relate to many things you have said or done. You did your best and that’s all you could have done.

Clairesmum · Answer

oh....you must be exhausted...what a long decade this has been. caring for elders is the responsibility that gets more and more difficult over time, as their needs steadily increase and our society pretends that all caregivers are superwomen who are never tired or angry or lonely. You did the best you could, with what you knew at the time you had to make every single decision for each of them. And dealing with the health care system nowadays is impossible - even for those who work in it! Please try to be gentle with yourself...
the butterfly image is lovely.....so glad that this place has been a resource for you...

MJ1929 · Answer

I'm sorry for your loss, but please give yourself a break. If you have kids, you know that many times you didn't do the right thing, make the correct decision, or in some other way may have done something that could have ruined their lives, yet you didn't ruin their lives. I know I did, and the kids turned out OK in spite of me, not because of me. Your mother probably made a ton of mistakes with you, too, and you turned out OK, right?

The same goes with caring for our elderly parents. We know what we know, and we aren't doctors, nurses, or specialists in geriatrics. Whatever we do wrong most likely has nothing to do with the eventual outcome, so stop beating yourself up.

Your mom is at peace, and eventually you will be, too. Give yourself the time to grieve and recover. Don't waste your time blaming yourself or others for her end, because it was coming one way or another.

Sadinroanokeva · Answer

I am so sorry for your loss! Truly sorry. I am on year 3 being moms everything.. yup I screw up some days and like you I lie awake and worry. Other days I do a great job and see the smiles on moms face. My goal is to get mom to the finish line. I am well aware that my friends often think I’m too involved but I don’t care. I do what she needs so she can be comfortable and reasonably happy. Take the time needed for grief. Know you did well!

Tynagh · Answer

I am so sorry for your loss; hugs to you, my friend (and though we don't know each other, we are comrades in grief).  Take what comfort you can in knowing you DID help them and spare them many a pain. We can't do everything and it is beyond human ability to take away all pain and suffering. We do what we can when we can.

Maidenkaz · Answer

I can only offer sincere condolences and hope that you realize all you have done and don’t blame yourself for missing one moment. It happens often that a loved one dies just when you step away. It happened to me with my Mom and with my sister with my Dad. We had been doing everything for them too. In a while you will have to build a new life but now you are grieving for her and for your life.

Daughterof1930 · Answer

Your post is honest and I thank you for it. Caregiving always has that feeling of thinking you’ve not done things right. What I see is that your parents were blessed to have you in their corner, your mother is at peace now, and you’re understandably exhausted. I’m sorry for your loss and wish you rest, peace, and healing in the days ahead

Levimoritz545 · Answer

Sorry for your loss Anita. May God give you the strength to get through the difficult times.

mpcanter · Answer

I'm new here and many of these stories fill me with fear and dread. But it's reassuring to know that there are still good people like you in the world who, through it all, care for and care about their parents' quality of life - all the way to the end. I hope good things are in your future and that some peace and happiness come into your life soon.

97yroldmom · Answer

Anita
I am sorry for your loss.

albleich · Answer

I understand the second guessing all too well. Understand you have done all that could be possibly done. It sounds as though probably more than most. Perhaps your mom waited for you to leave the room to pass because it was too hard to say good-bye. You did well by her. I am having a hard time navigating the system and advocating for my mother, and I AM a clinician. May your pain subside and allow the good memories to temper your grief.
((hugs))

jkm999 · Answer

You did your very best for your mother for 10 years and were advocating for her in her last 15 minutes.  You did the very best anyone could possibly do or expect to do.  You are going to be sad because this has been the focus of your life for so long so allow yourself to feel sad and grieve, but don't let yourself feel guilt. Nothing to feel guilty about; lots to be sad about.  My condolences.

Kaye55 · Answer

I am so sorry. You did your best. May God give you comfort.

Anitanita17 · Answer

I want to thank each and every one of you for your thoughtful words of comfort and support. I 'liked' every one of them, but that hardly seems enough. It's odd, but your kind words mean more to me because you know this path, so I thank each of you who responded to my message; your words made me feel seen and cry.
cxmoody, you're right. It would be right to pay forward the guidance and peace I've received from this community. I'll be lurking in the days ahead.

Peace and sustenance to you all of this arduous journey,

Anita

Cover99 · Answer

I'm so sorry

AlyssaMcManus · Answer

After my mom died, I had similar feelings of guilt and regret. There were times I didn’t, couldn’t, wouldn’t. I gave all I had and it still seemed like I’d failed her bc she died. Then I remembered something I read here about how the body is going to die, and there’s nothing we can really do to stop that process. We help as much as we possibly can, but the end result is the same. I felt numb and spaced out for about 3 weeks after my mom died. I think what you’re going through is definitely in the normal range for what just happened. In time, you’ll move forward.

Aliciaboots1 · Answer

You are so brave, and this is the toughest time. You mention all the details we do, and YOU DID, with love and dedication.
If it was simply loving and hugging our parent, or spouse, child; it would be pretty.
But it's not. It's hours on the phone with a lawyer, a pharmacist, a "front office" person, and over-worked charge nurse at the nurses station. Some of us wake up, hearing our parent or in-law calling us...and they are not. We are exhausted in so many ways.
I hope you find a space to just be calm, and let yourself grieve as you need to.
Much love to you.

lealonnie1 · Answer

I too have been the primary point person, POA, and caregiver for my folks the past 10 years, like you. Dad died in 2015 and mom is hanging on at 94.5 in Memory Care Assisted Living. I feel like I've made 1000 mistakes already, and will make 1000 more before it's all said and done. But neither of us have done anything with malice. Every decision we've tortured ourselves over has been been made with love and care in mind. When dad died, I didn't beat myself up for what I hadn't done, but applauded myself for what I had. When the day comes for my mother to take her last breath, I will be amazed at the fortitude I'd displayed for the duration, the hoops I jumped through on her behalf, and the measures I took to ensure her wellbeing. You owe it to yourself to do the same.

Don't ever focus on what you didn't do perfectly, but on how perfectly you came through for your mother each time she needed you.

My condolences on your loss. I wish you healing and light as you grieve this loss in your life.

graygrammie · Answer

Anita, I want to pat you on the back and say, "You did good!"  Don't doubt all that you've done for your parents.  You did what so many others can't do or won't do.  Instead of thinking of all the ways you could have done better, look at all the things you've done right.  Now a new chapter begins.  I wish you peace in the present, comfort in knowing you gave the best you could to your parents, and hope for your coming days.

Maple3044 · Answer

My mom died alone in her nursing home, between the time my husband left and I got there. I never felt guilty, because I thought she would have held on as long as some family member was there. If you can embrace that idea, it will ease your feelings of guilt. You did nothing wrong and you shouldn't feel guilty. Sending comforting energy to you.

CantDance · Answer

We all fumble and drop the ball sometimes in our care-giving journey because we're human.  Your parents were blessed by your care, however imperfect you think it may have been.  Now is the time to put self-judgment behind you, grieve, and emerge in time to the knowledge that your best was more than good enough. (((Hugs)))

Isthisrealyreal · Answer

I am so sorry for your loss.

Your parents were very blessed to have you, warts and all:-). You obviously did the best you could and please know that it was good enough. Aging parents don't come with instruction manuals and we all learn how much we don't know when traveling through this journey.

You did a great job on a tough assignment, give yourself a break and don't dwell on shoulda, woulda, coulda because every decision we make is based in the present, with the information we have then, not hindsight. You did well!

May The Lord give you grieving mercies, strength and comfort during this difficult time.

Great big warm hug!

cxmoody · Answer

I’m so sorry.

You were a blessing to your mom. And, you will be an extra blessing, if you help others who will be struggling with the same issues. Come back and help when you can.

funkygrandma59 · Answer

Don't ever doubt the great care you provided for both your parents. You did the very best you could, and that's all any of us do. Do we sometimes make mistakes along the way? Of course we do, but that's no reason to beat ourselves up, instead we learn from them and keep moving forward.
Both your parents are now smiling down on you from heaven, and are bragging to God about what a wonderful daughter they have, who took such good care of them.
So rest now in that knowledge, and take some time for yourself to rejuvenate your soul and body, and start living your best life, as that is what your parents would want for you. God bless you my dear.

My mom died tonight at her assisted living facility.

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