Primary Caregiver Guilt

[flo02]

I am new to the board and this may have already been discussed here but I am having such a hard time dealing with having been my mother's primary caregiver while she died of cancer. We only had hospice in my mother's home with her the last week of her life. My guilt stems from the fact that maybe I used too much of the medications that they gave me to help her. Mom was never one to take pain medication but in the last couple of weeks I couldn't tell if she was in pain and trying to hide it so that we wouldn't worry or if she really didn't have any pain. Well the last week that she was here and I began applying the creams the hospice gave me to use to relieve sick stomach, anxiety, pain, basically an overall relaxation cream. She became more and more sedated through the use of this cream but I applied it just in the case she was in pain b/c I couldn't bare the thought. I always told the hospice nurse what I had done and they said that it sounded like I was doing a good job. However, the Saturday that my Mom passed away, that morning I had put a pain patch on her b/c she seems really squirmy and was moaning some here and there and I just felt like something wasn't right. At this time, she had been so sedated that she wasn't talking anymore in normal conversational ways and seemed to be in that in-between life and death state so I couldn't ask her if she was in any pain and know for certain. So I made the choice to put this patch on her to relieve her of any pain that she might be having. At 5:30 that afternoon my Mom left this world and went home to Jesus. I am glad that she is at rest now, but I can't help but feel like I euthanized my mother now. I have researched the pain patch and have read so many things that say if it is given in too high a capacity it can cause respiratory distress and all kinds of other things that can hasten death. What if I rushed her along? What if my choice was the wrong one? I live with this everyday. And to top it all off, the reason these feelings all resurfaced is b/c of the whole Terri Schaivo thing happening b/c they were afraid the hospice would give her morphine to help speed up the process of death. I don't know what to do or how to feel anymore. No one else thinks that I caused my Mom to die b/c it was her time but I can't help but feel like I hurried it up now. My mother was my best friend and without her my life has been so empty. I think about her all the time and miss her so much is literally makes me sick sometimes. I know that with the type of cancer she had that she would've passed soon anyways but I just wonder if I made the wrong decisions on medication. I am willing to listen to anyone who can help me. Thanks for reading my story.

[spela]

The boy who I love died of cancer two months ago, at the age of 32. After months that he was feeling quite all right and we believed he would get better, though the prognosis at liver cancer is far from being good. He, all of a sudden, felt terrible, terrible pain - I think we can't even imagine. He was screaming, cursing, didn't know what he was doing. He was taken to hospital where he was lying for two days. I was with him all the time. He was in pain and the medicine they used at first didn't even help. After that they gave him something else, it's not morphine but something that I had never heard of before (I was told they use that drug after surgeries) - and he fell asleep. I was worried that they maybe gave him too much and that he was seduced but as soon they reduced the dose, he was in pain again and that was a terrible pain, I can't imagine - but just from seeing him, hearing him, feeling his hand squeezing me (with as much power as he had left, which wasn't a lot) - I knew it was such that he couldn't take it much longer. I don't think you made the wrong decision about the medication. Unfortunately, we don't know enough, we don't have the cure, and all we can do to help the person who's dear to us and who's dying is to try to relieve their pain and be with them so they know they're not alone and that someone loves them. Don't blame yourself - you did everything you could have. If there's someone to blame, blame God. I do that. A lot.

[flo02]

Thank you for your reply. And I have been angry at God as you said of where to put the blame. However, my mom was so close to God and had such a faith and hope in Him that I could never blame him for taking her. Gosh, I'd want someone who loves me that much to be close to me to just as God knew how much my mom loved and worshipped him. I know that her death would have happened within days of when it actually happened regardless of the medication I was given to use for her. I just run around feeling like I took days from her although she was basically sedated. That last week of her life was the hardest, most tramatic experience I have ever gone through so I tell myself all the time that that is what keeps me up in the air over her death and the loss is b/c I had to be the parent and make all the decisions which is something I'd never done. It is just easier to put the blame somewhere whether I have to carry it myself or not. And the only reason that I began using the medications for her is b/c she had a night that she actually did tell me that she was hurting and needed help and was begging God to help her. At that time, hospice had just starting coming into our home and had not yet left me with medication so I felt helpless that night. I gave her a pain tablet crushed up that she had which she barely choked down b/c she wasn't drinking much water at this time either. Gosh, there is so much to tell and so much to feel and it is with me so much that I could probably write a book and put in detail every hour of that week. All I know for sure is that I miss her so much and feel like I should be moving on by now and letting go of some of this pain/grief but I don't know how. Again, thank you for reading this and your replies.

[MissMyMom]

Dear Flo02,

I just wanted to let you know that I read your posts and really believe that I could have copied your post and signed my name to it.....I wanted to let you know that I truly do understand how you are feeling about the medication and the possibility that you overmedicated your mom. I don't have any real answers about whether or not it's even possible but I too feel the same guilt and wonder if I did anything to hasten my mom's death. I was the person taking care of her (with my husband's much needed assistance and love) and I was giving her the pain drops under her tongue. The wonderful people at Hospice told me I could give them to her every 2 hours (I think....it was almost a year ago and even though some of the details will never leave, some are starting to get fuzzy) and I didn't want her to suffer in anyway so I would continue to give them to her around the clock. She was in a coma at the end and couldn't speak or tell me if it's what she wanted so I don't know if I did the right thing. It was very frightening and I only wanted to do what was right for her....I would talk to her and tell her that it was all in her hands and that it was ok for her to let go if she wanted to and needed to and that I loved her and that I'd never be mad at her for letting go because I only wanted her to be at peace and I wonder if I did anything to speed it up....did I push her? Did I overmedicate her? She always hated medications and drugs and never wanted to be "not in her right mind" and I didn't like doing anything that I thought she wouldn't like but I didn't want her to feel any pain of any kind......

Sorry I was rambling but I really wanted you to know that you didn't do anything wrong and you were just doing what you thought was best for your mom and I'm sure she knew that and that she loves you for taking care of her.

I know that sometimes it seems like no one could ever understand the pain you are feeling but please know you are never really alone.....

Wishing you peace...

[MartyT]

Dear Ones,

The following article appeared in the March 2005 issue of Hope Line, a monthly publication of HOPE for Bereaved, Inc. It is written by Darcie Sims, a gifted writer who is also a bereaved parent, grief management specialist, certified grief counselor and pastoral bereavement specialist, licensed psychotherapist and hypnotherapist. I want to share it with you here, because I think it addresses so beautifully the issue that you've raised:

Guilt

Most of us have experienced guilt at some point in our lives. Sometime, somewhere, somehow guilt has become a part of our awareness.

Guilt, in fact, should be called the Number One Disease in America. We feel guilty about everything – when we feel bad, when we are sick or tired or late. We feel guilty because it’s only meatloaf. We eat because we are guilty and we starve ourselves for the same reason.

We give up ice cream because of guilt and pretend to “love” broccoli as much as cheesecake. We clean house, iron permanent-press shirts, and call home because of guilt. We balance the checkbook, stop at traffic lights, and watch the speedometer either because we already feel guilty or we think we should.

Fault and blame are companions to guilt. It is always someone else’s fault. “Someone is to blame for this . . .” is probably one of the first complete sentences uttered by Man (Woman?) when speech was invented.

We are so good at accepting blame and fault and guilt that we do it without even noticing. We apologize for the traffic jam. We feel bad about not eating enough fiber and we are convinced that if only something else had happened, then this would not have occurred.

“If only . . .” – perhaps the two most difficult words to live with in the human experience. “If only I had known. If only I had listened. It only we had been there. If only we’d gone to the doctor sooner.” The “if only’s” echo throughout history, each accompanied by the worst feeling of all: guilt.

Guilt is such an overwhelming emotion. It colors our thinking, our actions, our reactions. We do things because we are already guilty or because we don’t want to be guilty. We send cards, make phone calls, put off doing some things and do other things that we really would like to put off, all because of guilt.

The other side of guilt is responsibility. Who is responsible for this? What things do we know we should have changed? What pieces of the puzzle should we have played differently? “If only” and “should” have become the mile markers on this journey. The more we look for them, the more “if only’s” we find.

We revisit the events in our lives a thousand times and then search for anything we could have done differently – some little twist or turn that would have set the scene differently or that would have turned the ending ever so slightly. We agonize over the smallest detail that we didn’t see or that we forgot to do or that perhaps we ignored. We search the past for keys to the future we grieve for, for we believe ourselves to be ultimately responsible for the events that have created our NOW.

Even if we can step outside ourselves for a moment and allow rational thinking to return, the secret, private, inner conversations still search for “if only” – a desperate search for some reason, some explanation of why. Surely someone is to blame for then and now! If no one else is available, we will accept the guilt ourselves and begin to know that our loved one died because of something we did or did not do, think, know or believe.

Guilt becomes one of the most difficult parts of the journey. It lingers perhaps far longer than other emotion. There is always something we can rethink, replay, and relive. In hopes of – what?

“If only . . .” is a sentence we never finish because we know it isn’t possible to recreate the stage, the scene, and the play. We can only wish for a different ending. “If only” becomes the title of every thought we have.

If guilt is the number one disease in America, then surely we must be on the verge of a cure! We can fix just about everything else. They have even discovered fat-free fat (although the fat-free ice cream does not rate the description of decadence!) We must be close to discovering a pill or potion or thought process that will alleviate the pangs of guilt that cling to the walls and “gum up the works” with the heart and soul.

Until the cure is patented, I have found a few tricks of my own that have weathered more than a few guilt trips. Whenever I feel overwhelmed with guilt feelings, I write them down. I make flash cards of my guilt. Each guilt has its own flash card. I can shuffle these guilt cards to my heart’s content, arranging and rearranging them according to my mood. I can list the guilts chronologically, according to the way things really happened (or should have happened). I can arrange them in the order of their importance or in the order of pain still felt. I can manipulate those guilt cards until I begin to feel a sense of control. I can select one or two to carry with me just in case I forget what I am feeling guilty about; once in a great while, I can tear up one and throw it away.

I have also perfected the technique of catastrophizing. When I am really “into being guilty,” I have learned to take my guilt to the very farthest limit possible. This works best on current guilts rather than on past guilts, but let me give you an example. Several months ago, I visited my sister for a family celebration. It was my job to put the turkey in the oven before joining the family across town. I spent a great deal of time figuring out how to turn on her family oven, complete with timers and remote controls. I then dashed out of the house, hoping not to be late. When we returned much later, we discovered that I had, indeed, set the oven correctly and everything was working properly. I had, however, forgotten to put the turkey in the oven.

Therefore, I ruined what was supposed to be a lovely dinner party. Of course, I had ruined everything by then: my nephew’s graduation, my sister’s dinner party and reputation as a hostess, and the joy of being together as a family. It just got worse and worse until I remembered another guilt from a long time ago. Suddenly, a cold, uncooked turkey seemed a bit silly.

Grieving people seem to develop a new sense of what really matters and cold turkey can hardly match the emptiness of the chair at the table. Guilt should be saved for the really big stuff! When the really big stuff hits, there is only one thing to do. Pay attention! Don’t deny the guilt that sweeps over you. Let it come, acknowledge it, experience it and then let it go. The only “cure” I know for our kind of guilt is to remember this: If you could have, you would have.

Trust yourself! You (and I) did everything possible at the moment. It wasn’t enough or right or whatever, but we did what we were able to do, think and believe. If you had known what was going to happen in the future, you would have changed the present so you wouldn’t have to live in the past. Trust that. Believe it!

There are no crystal balls or magic wands. Work at learning to forgive yourself for living. Only then can the music begin again. Take care of yourself, eat right, obey the speed limit, open the curtains and claim today. It is ours. In spite of our inability to manage it well, the day is ours.

Use it not to find the one thing you could have changed, but to find the things that you can do now to recapture the love you haven’t lost. Our loved ones have surely forgiven us; perhaps we should try that ourselves.

I’m counting on Heaven being guilt-free; at least they better have real ice cream!

– Darcie D. Sims, Ph.D., CGC, CHT, Grief Inc.

[flo02]

Thank you so much for your replies to this thread. I know it is selfish thinking when I think no one else in the world knows my pain. I feel better to know that I am not alone and in the same thought I am sadden by the fact that there are so many of us out there who experience this pain and guilt on a daily basis. Thank you so much for that article on guilt. It sounds just like me. I go through the if only's so many times and I relive the days I spent with my Mom, the good ones and the bad ones. I would never give a minute up that I spent with her even if I could. And if I hadn't been the one taking care of her I would've never been satisfied with how anyone else would've done it. My Mom is safely resting now in the arms of Jesus and I know that she is at peace and does not hate me for pushing her into the Heaven she lives in now. BUT, there is always a BUT, I just hope that I did not hasten her death and made her lose days of what she could have spent here on earth with us. I am trying to let go and move on but I loved my Mom so much and have had a little girl since she has passed and now realize the unconditional and true love she must have felt for me. I keep telling myself that it's ok for me to feel the way I do but my brother and father and the rest of the family have appeared to moved on in life with ease and here I am 3 years later still obsessing over what I could've done differently and IF Mom were here now.... Anyways, thanks for reaching out and listening to me go on and on.