I Know You Have All Felt This Way

[dave s]

have seen many ups and downs with my journey.....usually downs...as i know everyone has...it has been 1 month and a day...am feeling kinda foolish now....Mike never wanted to be put on life support.....I as a nurse know that a great many people are "tortured" witht eh family prolonging the inevitable...... and yet when I was told he was septic ( a massive infection in the blood stream ) I immediately stated there is no hope....we are going to pull care and place in hospice......why do i feel so guilty....i did the best i could with the knowledge that I possess....I lovedhim soo much that i couldnt place him in that position....I am haunted by the memory of rolling him out to the ambulance to take him to hospice...he stated will you stay with me until i go home.....was it home with me or did he know what was really happening.........I stayed with him until the end.... 3 days later.... i jknow that I did the right thing but emotionally .......feeling sad for me

[sunstreet]

Dear Dave,

I am sorry for your pain. I understand your feelings of guilt. I believe it is a normal part of the grieving process to somehow think that it was our fault. I don't believe it means that we are guilty; as is a feeling state; and not a reality state.

The love you shared with Mike is so evident and I know that every choice you made was born out of the love. Please I encourage you whenever the guilt feelings come to say to yourself---it was not my fault---and kick those guilt feelings to the curb.

I am sorry you are haunted by the memory and I hope in time that eases and eventually doesn't haunt you at all. What I envision is a couple who deeply loved one another sharing their last three days together and how sacred that was and how precious. In time your emotional self will catch up with your intellectual self that knows you did the right thing.

Blessings and Courage, Carol Ann

[pinkpony]

oh how I know that feeling, though my dh was on hospice 6months before he passed, we had discuss what to do in the end, he had brain,bone & lung cancer & were told at the begining of hospice care that he could go into painfull tremors from the brain cancer at the end & they told us that they could give him med that would keep him comfortable, but he wouldn't be able to talk or function. He had chose this plan if it got that bad. 4 days before he passed he was falling a lot & very confused & said he was ready to go to the hospice home to die(we knew it was coming the nurse already had the paperwork done)he kept getting worse & the tremors started & he was in extreme pain so when the dr suggested the med I said yes, when it kicked in he was finally at peace & passed 2days later.

I do somedays feel guilt for doing that even though I know it was he choice before he got bad. We have to remember that we didn't cause them to die(I knew he was going to)we took care of them to the very end the best we could & kept them as comfortable as we could.

[ksbeachbum]

I also had the same situation with my husband. He passed two months ago tomorrow. Sinus cancer that made its way to the brain. The confusion and falling down and then into the bones and the pain. He was in hospice for four days before he passed, but no discussion of what to do because it came on so fast and to relieve the pain he was so sedated with the morphine that I felt like I didn't get to really say goodbye or that he even knew what was going on. Many many regrets. He did not sign a DNR order and when he became unresponsive the hospice social worker hurried to our house to get his permission for me to be medical power of attorney. He very faintly said yes but could not sign it, but X'd it. It was witnessed and I was then allowed to sign DNR. I was told in Florida if there is not a DNR, hospice has to call the law enforcement about a death and it is investigated. Did not want to go through that. Also, regrets of not laying with him, cuddling with him when he was more alert. I felt like I could not touch or stroke him as the hospice nurse told us they register that as pain.

Dave, please know you are not alone in this journey, although we all feel like it. I am very anxious about this weekend, as this is the first weekend that I am truly am alone in this house with really nothing to do or planned. I imagine I will be on this message board a lot. May all of this bring you some peace and know that I am thinking of you.

Becky

[west]

I too lost my husband to cancer and after two weeks in the hospital he came home for a week and finally passed. I was grateful to God that he did not suffer a long drawn out and painful death. At that point I knew it was best for him and that extra month would be great for my children and I but not for him. I believe it was merciful that he no longer had to suffer. It has been a year and I miss his laughter, his strength and his love. I know he is in a better place and I look forward to the day I can join him, but for now this journey of grief is exhausting.

[kayc]

I think most of us went through a questioning ourselves stage..."what could I/should I have done differently?" Did he know that I loved him more than anything in the world and would have given my very existence for him? Yes, he knew that...no matter what we experienced at the end, the very essence of our relationship was built on love and faith and understanding and acceptance. We do our best with the knowledge we are given...and they know that.

[mfh]

I agree with all that is said here. I wish I had never put Bill in the hospital as he went straight downhill when I did it to see if we could get him mobile so he could stay home. On a Friday I was told to move him to a nursing home. On the next morning, another MD (who I will love forever) told me to take him home and call Hospice. I followed the latter and he came home and died 5 days later. I always wonder what would have happened if I had never put him in the hospital. He was tormented there so the last 6 weeks (minus 5 days) were torment for him and I feel responsible even though my head knows I did my best. This is the exhaustion of grieving...head versus heart...my consolation is that he wanted to die. He could not do anything because of Alzheimer's and wanted out. Dave, somehow we all have to let go of this guilt we harbor. We did the best we could at the time and when we ask ourselves if it was good enough...we have to return to the fact that we did the best we could at the time. Hard to do. My consolation is that I believe Bill NOW knows I tried and forgives me for anything I did that was not good. I hate this grieving but the road is mine (and ours) to walk. mfh

[beakerj]

Hey Dave, just to say that, for me, it sounds like you did ALL the right things.

There's a big difference between treatment that prolongs people's lives, & that which prolongs their deaths...once you cross that line it is time for us to let them go. You know that, as did my Mum, a Nurse of almost 50 years, who died of cancer last November. She knew the score, & had worked terminal care & Neuro intensive care, so none of it was a shock to her. She always said she'd have DNR tattoed on herself, it never came to it, but we would have honoured her wishes if it had. Typical blinking Nurse.

I don't know if she knew we (my brothers, me & my Aunt) were holding her hands as she died. But she was utterly confident in our love & saw us there with her every day, until whatever was her last conscious thought. I'm sure this is true for Mike too.

I'm not surprised you feel sad for you, it's very new & totally awful. I still feel sad for me, sad for my family, & sad for us all on here. Grief is ...um, words fail me really, grief is a massive horrendous bitch of a thing...something like that.

Wishing you all the best,

Becka

[Dwaynecg]

Dave,

The strongest emotion I felt after Pauline's passing was GUILT. The hospice counselor told me it is normal to feel that way, but in reality there was nothing I could have done any better or different. The one emotion I have never felt from my loss of Pauline is ANGER. Why I don't know. Guilt has ben the big one for me. Of course sadness, loneliness. I do not have the guilt as much now 3+ months from the time of her passing. I still cry every day but we all do. Right now I am in a place in my mind I want to help other people. I will be taking a nursing class in July. That is my focus now, I know Pauline is watching over me and will be proud when I become a nurse and able to help people like I had done for her. Grief is tough for some a lot harder than for others. But here we all are, and for one I find comfort here at HOV.

Dwayne

[dave s]

Thanks for all of the replies, this post and replies has given me alot of comfort for TODAY......may tomorrow be as kind.......dave

[just one more hug]

Becky..it's me again...just read this post and did not realize it has been only 2 months for you. Almost three for me. Your experience echos mine in so many ways...from hospital to hospice (for 3 days} then home for three days til he passed. I will never forgive myself til the day I die for some of the things I insisted he try to make his life easier. During his last hospital stay he got infected with C Diff and brought it home with him. He just got sicker and sicker til we took him into emergency and by then they told us it was too late. In a matter of weeks his enire colon was eaten away by this horrible hospital borne infection....and over use of antibotics...which left the colon with no defense.

I did lay with Bill and cuddle during his last days at home...he knew how much I loved him and that I would have traded places with him in a second. I know he has forgiven me for my insistance at trying to help him...that's just the man he was..I just need to find a way to forgive myself. When I can't sleep at night all I see are pictures in my mind of him in ICU and his last days at home...fighting all the way to stay and I just ask myself over and over...what if this and what if that??? Guilt can kill you....and I am working hard to forgive myself...that is what Bill would want...he loved me and would never blame me...and I know when my time comes he will be waiting for me with open arms...til that day... I have a lot of forgiving to do...of myself...I have aleady started and its a rough road....but I see Bill at the end of it and its going to be ok.

As I said in my other post to you...if our love for each other is as strong as we know it was...our husbands would kick our butts for these feelings we are having. God does not make mistakes...He forgives us too....if we need it!!!

Carol

[Susie Q]

My husband died of a brain aneurysm - no warning and gone in four days. I agreed to organ donation because I know that is what he wanted.

One of the emotions I have not felt is guilt. I have questioned everything I did, just like we all do. But I decided very early on in this nightmare called grief that because we loved each other so much, and knew each other so well that he would trust and believe ,100%, that anything I did, agreed to, or allowed, always had only his best interests at heart. Just as I trusted him 100%.

I think that love motivated each of you in every action you took too, pure love.

We all had options but decisions needed to be made and all we can ever do is act with the best ntent on the knowledge we have at the time. It has helped me greatly to remind myself of this when the questioning voices come into my head.

I miss him so very much, long to have him here with me every minute and will always carry a broken heart - but guilty..no.

Sometimes you have to stand up and defend yourself against your own thoughts - this is an example of what we all mean when we say 'be kind to yourself'. It takes some practice but it has helped me over some really rough patches, especially in the dark of night....Susie Q

[azbrian]

Hi Dave,

You wrote, "II as a nurse know that a great many people are "tortured" witht eh family prolonging the inevitable.."

That is why when I knew in my head not my heart that Ruth was already gone and she might be suffering even though she was on meds, that I told them to pull her breathing tubes. I was not going to have her lie there like that any longer than she wanted she wanted to. Our nurse, Carolina, said she would get the doctor and they would be back and that everyone would have to leave the room while they did this. I told her that I would let everyone know but that I would not be leaving the room. She repeated that I could not stay and that it can be very upsetting to watch.

I looked at her and told her that I will not let Ruth go through any of this alone regardless if she knows I am there or not or what it may or may not do to me.

It took about 9 hours for her to stop breathing, it seemed like it was about 9 minutes.

Carolina was right, it was very upsetting.

Next to my sister in law Carolina is the best nurse I have ever dealt with. She did a lot of things for us and Ruth, some things like about 20 people in the room she could have gotten in trouble for. Ruth passed about 20 minutes after her shift, she had stayed and I saw her crying at her desk outside of our room.

[west]

It is funny after a year I do not feel guilty because I really knew we had tried to do everything. when it is stage 4 cancer there is not much to do but pray for peace. I think the hard part of the journey is to realize that you are alone and the loneliness is the worse. No one there to ask you about your day, to comfort you, to tell you it will be alright. That is what I am sorry for...not guilty. I think if he could stay he would have so sometimes there is anger that this is what happened to him too early in his life.