I have taken everyone's advice and started grief counseling to deal with my mother's death 5/26. One giant regret with which I cannot cope well is not asking more questions before agreeing with Mom to start hospice. She was in the hospital - this admission for cirrhosis from auto-immune hepatitis - previously undiagnosed. Ascites in stomach - inflammation -stomach/pancreas,etc. She had been on a glucose IV because when she was removed, she would crash. She almost went into coma during ER admission.
She also suffered from CHF, cachexia, GI bleeding, osteoporosis, breathing trouble, anemia, low sodium, etc. 3x previously, I had talked mom out of hospice care, because based on discussion with her PCP, agreed it was premature. The doctor this time said there was no curative treatment - she was too fragile for any steroids, he would not do a feeding tube because of the ascites in her stomach ( said it would just prolong her suffering a few weeks - plus she had in her advance directives no artificial hydration or nutrition). She was having trouble swallowing, and despite having given her some meds to enhance her appetite, she had not eaten much at about a week and a half ( just a few bites here and there...).She said she was in severe pain ( 8/9/10 - and she NEVER complained about pain), was tired, suffering and just wanted to go ...she was crying and moaning during the meeting.
I wanted to tell her to not give up - for us to keep fighting, to find SOME way to extend her life...but I could not find one and the doctors provided no solutions...so this time, I did not battle her, did not try to talk her out of it. I did not know they would stop her meds, etc...but when we tried the give her anything - she could not swallow. I tried to get her to eat some yogurt/applesauce -or drink - she would purse her lips and /or say "no" - there are some things I do not remember 100% because it was so fast and traumatic for me...from thinking she would be stable and discharged with at least a few more weeks/months, to dying 6 days later.
I am in so much pain, I do not know how I will ever function - pain of losing her, pain of feeling I did not fight enough - know enough - ask enough questions about hospice, the process, etc...Mom would not come home, and the doctor said she was way too fragile to move, so she stayed in the hospital - with me by her side for 6 days... I just think I should have fought harder, explored more options, more doctors ....something .... not just let her go like she asked so many times. I do not know how long I can bear this agony - that I let her down, that I did not ask enough - explain enough to her before it was too late - that I did not fight against hospice and the end as I had 3 times before...this time I listened to her and "let her go", and the agony is gut-wrenching. Please give me hope that the pain will subside in time and I won't feel like such a failure as a daughter and caregiver.
I'm so glad that you've started counseling, and I hope it will help.
I'm not sure why you think that your mother's wishes should have been over-ridden. She was competent, didn't have dementia and was wanting to be out of pain. She was too fragile to move and had multiple, serious morbidities.
"No curative treatment" is exactly what it sounds like; the doctors have come to the end of their bag of treatments. It is very, very hard for a doctor to admit that; they don't like to lose patients and most doctors are rather reluctant to say "yes, it's time for hospice". I had the same situation with my mom; it was always "almost, but not quite".
You couldn't have dragged your mom around to see more doctors; she was too frail even to go home.
You talked her out of hospice before this; this time, she made her wishes very clear--she was ready to go.
Honor your mother by understanding that this was not YOUR choice; it was HERS.
To grieve, you have to get to the point where you understand that it was inevitable that she was going to die and that dying is as much a part of life as birth is.
I'm very sorry for you loss and sorry that you are having difficulty coming to terms with your false sense of guilt. This was NOT something that was within your locus of control.
Your mother was begging to be let go, by what you've written. If you had continued to fight the doctors to extend every agonized breath she took, you would have been not only not following her advanced directive, you would have been disallowing her last dignity, which was to pass according to her own wishes.
I understand where you are, for when my husband and I were caring for his mother, I got wrapped up in her health so much that I felt it as a personal failure if she declined. That's not healthy, and utterly unrealistic. We all have a certain lifespan. Yes, it can be extended, but should it, if the outcome is extending pain, suffering and fear?
You have an abundance of love, as is clear by your profound grief. Please give yourself the gift of now turning that love on yourself. You don't need to forgive yourself, because you have nothing to be ashamed of, and did nothing to be forgiven for. You will get through this grief, and you will enjoy your life again.
So you have all the information now. I do not believe actually that there is any part of your that believes there was an answer for your mother, that she could live ongoing without severe agony.
I will leave to your own grief counselor how much "tough love" she thinks you can take in telling you that you know all of the facts, but are choosing to stay here where you are in the grief process. But you have come here now at least three times telling us the same thing, with a long and beautifully written explanation that shows that there is nothing we can say to you that you do not know. So I will level a bit of tough love of my own.
Your repetition of the facts are now a habit: there is a payoff for you in this, of course, and it is like putting your money in the machine, with the payout being our telling you you were "right" and "you did well" and "No one could have done better.
Laurabelle, you were RIGHT. You did WELL. NO ONE could have ever done this BETTER.
Now. Is everything all fixed?
Because no, it isn't. Try to change the semantics here. Instead of having SOMETHING to blame, and when you find NOTHING to blame turning the wrath back onto yourself try this. Whenever you start on this habitual thing try this.
I did the best I could. There were times I was less than perfect, but I did the best I could. But I can't STAND that she had to hurt, and I can't STAND that she has left me, and I miss her so much. I just want to TALK TO HER. To say "Mom, I may have come up short, but I tried, and I miss you so much I can't STAND it".
The truth is that you are grieving the loss of your Mom. It will take a longer or a shorter time to do that. It will take what time it takes. And then there is the fact that much of the choice in this is on you. Just as the care of your Mom was so often painful and hard, the care of YOURSELF will often be painful and hard.
You can come to the forum a thousand times and there will be still no answer we give you, no matter how many times we tell you how well you did, that will make you believe that, until you believe it.
I lost my brother early May. He was, to tell the truth, THE man in my life for all my life, and at 85, it was a long time I had his love and support. I did all I could for him. But I am an imperfect person, and there were times I remember it wasn't good enough. I think sometimes now "You never told him how good he always was, blah blah." And I write him a letter then. Problem being he doesn't answer back, but I know what the answer would be. And you and your Mom? Write her a letter and you know what her answer would be.
I see you still stuck, Laurabelle, and I so long for the day you come here and you tell us that the wheels are moving out of the mud, and you are moving forward. Forward is the only choice.
Thrilled you are in counseling, and hope she's a tough cookie, and at some point will level with you so you can move on. I hope you stay here, for there is much you can teach us about how to love and care for people.
My LO is on hospice and I'm glad that she is getting as much comfort as possible. I have no desire to keep her around for my benefit. Everyone passes away when it's their time. It's very sad, but, inevitable when someone's body shuts down. I have not lost a parent, so, I can't imagine the grief and loss. I have lost other loved ones though and find that while it's painful, I adjust to it better over time. I speak with my LO's hospice social worker and chaplain and it helps me a lot. Grieving is different with everyone. I hope you are able to find peace.
I am sorry if this comes across as insensitive, however you have specifically stated that your mother was ready to go.
I hate to sound like I'm chastising, but stop living with regret. You should be SAD, not agonized over your choices. You respected what your mother wanted and specifically instructed. Anything you would have imposed would have been against her expressed wishes. Her passing IS NOT YOUR FAULT.
I am so sorry for your loss, I am so sorry for your sadness. Your relationship with your mother sounds like a good one, and is probably filled with many wonderful memories. Focus on them in your grief.
In reality, nobody has the power to play God. Not you, not I, not anyone. When God is ready to take one of His children Home, He does. Nobody stands in His way; not hospice or anything else, for that matter.
By the time my father was deemed 'ready' for hospice, he lasted 19 days. I was so relieved that God took him in 19 days because he'd been through ENOUGH pain and disease process during that time, and during the years leading up to his hospice time.
When is enough ENOUGH for a human being? When I worked as a front desk receptionist in a Memory Care home before the plague hit, we had a Catholic deacon who'd come in every Sunday to meet with the residents and hand out communion to those who wanted it. We got to talking one day about the fact that both of our mothers live in Memory Care ALFs. He told me that he prays daily for his mother to die. Why? Because she's tired and ready to move to the next phase of her eternal life, and he's 100% for it. What he's against is prolonging her earthly suffering for one more moment.
I truly hope that your counseling helps you move past the inevitable fact that your mother was too sick to live any longer on Earth. And that you had no power to stop her transition, hospice or no hospice. We are mere mortals, my friend, and our time here is limited. Please be proud that you cared for your mother in such a loving manner as you did for the time that you did. And know that she does not want to see you like this, now, suffering and beating yourself up over something you had NO CONTROL over to begin with. Know that in your heart, and allow God to heal you and your counselor to talk you through that process.
But I do know that both my brother and father would NOT WANT ME to be sad, to be carrying regret, to be constantly reliving the past. I'm certain, your mother would be so distressed to see you so broken. She would reassure you she is fine, she is at peace and that she felt your love and care. She wouldn't want you to suffer like this.
Please please be gentle with yourself. We are only human, none of us is perfect. Loss hurts, it's so painful and I guess it takes a long time to come to terms with.
You did not fail. Please offer yourself the care your offered your mother, you deserve it.
Sending you good thoughts and love.
This was her choice and quite frankly it would not have been so sudden if she was allowed to accept hospice when she wanted to originally. Doctors are not the be all end all and each person should be allowed the dignity of dying as they choose.
Easy to think you should have fought harder when you were not the one suffering in pain.
I am sorry for your loss but you need to honor your mom and stop thinking you should have just disregarded her pain and suffering so you could still have her with you.