March 19, 2008 at 11:07 pm #19389beckyParticipant
patricia- you did plenty- that is why he stayed as long as he didMarch 19, 2008 at 8:07 pm #19388bbfransonParticipant
Wow. Scott’s not even dying and I feel these things. I feel them so much, I have to pray myself back into the here and now. I can’t deal with the last year and everything that’s happened, and I can’t deal with what’s going to happen. I can only handle today, and sometimes I can only handle the next hour, or the next few minutes.
It gets the most frustrating when I think about all the things I should be doing, or should’ve done. In reality, as a caregiver, it’s everything I can do just to breathe. That in itself is a crushing weight that I pray God will carry for me.
Trust me, if you were magically back in this situation, you would know that you have done the very best you can. We are human; we make mistakes; the Lord will know that it was our best and perfect our efforts. I believe in grace with all of my heart. I must. Otherwise, there is only despair and regret.
Anyway, God Bless,
BrendaMarch 19, 2008 at 4:11 pm #19387kate-gMember
Hi Patricia. I don’t come by the site too often now, but pop in every couple of weeks for a nose, to see how everyone is doing.
I just wanted to say that I too have the same kind of feelings that you do. It is not quite a year since Mum died (21st April), but I often find myself wishing that I’d made more time for her when she was staying with us, wondering how I could have done more for her etc etc. Like you, I know it is not necessarily rational thinking, it comes from a place of sadness and pain.
Just wanted to say hi really, and to let you know that you are not alone. Much love xxxMarch 2, 2008 at 7:01 pm #19386ukmemberMember
Thank you for your post. I understand exactly what you feel and in your case I can see that you are being hard on yourself I know that I am also being hard on myself – but what my head says and what my heart feels are sometimes different. I wonder if we ‘doers’ always feel a sense of guilt that our doing wasn’t enough. Those who are able to accept and prepare for death, are able to give up gracefully.
PatriciaFebruary 29, 2008 at 9:18 pm #19385cfox8Participant
My Mother passed away six months ago today from cholangio. I felt a great sense of peace for quite a while after she died, but I too have been recently feeling very guilty and questioning things that I did or did not do.
She moved into our house right after she started chemo because she was afraid to fall down the stairs. My father was also a great deal older than her and still expected her to take care of him even though she was so sick. I was pregnant with child number 6, but I am a natural caregiver so I loved her living with us. She loved it too, but she would never accept the fact that the chemo was only keeping the cancer at bay, and would get more and more frustrated as time went on about “why am I not getting better?” and “why can’t I get stronger?” It does not help that her doctor who she idolized told us at the first meeting that we were going to “go for a cure” (he denied saying it later at the last meeting where they said we needed hospice). My life got so chaotic during that time, and I did not realize how much stress I was under until afterwards. It is hard to remember her as a healthy, vivacious woman like she was before cancer. I feel bad for her because she never was able to process in her mind that she was going to die. I am someone who thinks that she can fix anything, so why couldn’t I fix this? I feel guilty too about not sitting in there with her more, or why did I get so frustrated when I had just sat down to work and she wanted another bowl of oatmeal or cup of coffee that would only get rinsed down the drain because she would fall asleep before I got back in there with it?? I am sure it will take all of us some time to work through these feelings. Last Sunday in Church I was sitting and thinking about how I was not technically “there” in the room with my Mom when she died. I was helping the aide clean her up, and looked out of the window to see our priest pull up. I did not want him to see her exposed, so I went out on the deck, talked with him for maybe five minutes, and when we came back to her bedside, she was not breathing. The only person that was with her was the stupid aid who did not even know she had passed. It happened that quickly. Anyway, I was thinking about this in Church, and my husband (who was holding our 1 year old in the back) came up behind me and rubbed my shoulder and kissed me on the cheek. I did not think much about this at the time. After Church, he asked me if I was thinking about my Mom during Mass. I told him how I was thinking about her and feeling guilty because my Mother died alone. He said that when he came over and kissed my cheek something “pushed” him towards me and made him do it – it was a feeling that came over him. He is sure it was my Mom telling him that I needed comforting.
I know that I did the best I could at the time, and that I am only human. Hopefully, the guilt will lessen and we all will feel better as time passes by.
Just know that other people feel the same way, and that we all do the best we can in circumstances.
CarolFebruary 29, 2008 at 2:59 pm #19384betty-johnsonParticipant
Patricia – this was only a short season in both of your lives compared to the many seasons that you had during your marriage that were happy. I have to remember this when I look back and think about how much Sam suffered;
I have to wipe that out and remember how tough, strong and good-looking he was for 34 years – not those last few months. This was probably the toughest thing that has happened in your life; you were doing the best you could possibly do and both of your emotions were stretched beyond their limits. Look back and remember the good times; I just bet they will outweigh the bad. Take care.
Betty JohnsonFebruary 29, 2008 at 1:58 pm #19383karenParticipant
Do not “beat yourself up”. Push the guilts away. You were working to keep him alive as long as you could. This is a very tough disease to live with as a care giver and so much worse for the individual who has it. Patients run thin at times and we cannot take back words spoken. However, actions speak so much louder than words and he saw all the love you had for him by the research you were doing for him. Take care of yourself.
KarenFebruary 29, 2008 at 11:06 am #1124ukmemberMember
It’s almost two years since my husband died. I have got used to the fact that he is not around and am managing quite well with the help of family and friends. But other feelings have taken over.
I feel guilty much of the time. I seem only to remember the times I didn’t give the type of care he wanted. I was too busy looking for a cure to spend real time with him. I regret the fact that he bought dvds to cheer himself up – they weren’t my taste – but why didn’t I just sit with him and enjoy them anyway! He loved music and would listen alone, why didn’t I listen with him? I took food to the hospital – sometimes twice a day – but now I think that I didn’t put enough love into making it for him.
why was I managing the family to support him, massage his back and feet and why didn’t I do more of this kind of thing myself? He kept a notebook while he was in hospital and in it he said that I was ‘key to his recovery’ I know I couldn’t have saved him but I feel I didn’t see enough and do enough. Most of all, when he said to me, the day before he died, ‘I do love you you know.’ why why why did I say ‘No, no you don’t. you’re horrible to me’.
I have a friend whose husband has been very sick for three years and is coming to the end of his life. He is very critical of her angry and unloving, though I am sure he loves her after 40 years of marriage. I want to say to her however angry and resentful you feel, remember the few weeks you have now are all both of you have left, to be together, to do things that bring you together and leave you with good memories.
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