It hurts so bad

[KATPILOT]

For what it's worth Patty  things don't always work out as we planned. You are not cursed however. You are just fighting this battle without Ron and though it seems pointless there just has to be some reason for us to keep on living. It's okay to stop on the side of the road sometimes. Just stay with us for one day you will find the pain easing.

I'm thinking about what you said about those last days. I think it was his fear of leaving you. You didn't rob him. Life did.  As I sat watching Kathy at the end, I was overwhelmed with sadness that I could do nothing to stop what was about to happen to her. How can any of us make the realization that the end is coming feel any better?  People don't talk much about what it's like to watch someone you love die. We talk about what happens right after.

Even today when I go to work often before the sun comes up, I listen to music. Her music. And even though I have tears is my eyes sometimes, at least I'm alone and no one else sees. I also know that when eight o'clock roles around I will be in control at least as far as everyone else is concerned. Music is powerful medicine for the soul.

One last thing I want to remind you of Patty as you struggle right now is that if you do the best you can, then you did it right. That is all we can ask of ourselves.

[kayc]

Patty, Congratulations on making it one year in your shop!  That's quite a feat!  I don't know what a digital piano is, but it sounds like a great idea, something to occupy your attention and stir your creative juices, which are so good for our soul.

I'm glad you talked to your therapist instead of ending it all.  

[Cookie]

Mitch:  Just realized you had a birthday...happy birthday.  You have contributed so much to this site for me...thanks, warmly cookie

[mittam99]

2 hours ago, Cookie said:

Mitch:  Just realized you had a birthday...happy birthday.  You have contributed so much to this site for me...thanks, warmly cookie

Thank you Cookie. What you said about my contribution to the site means the world to me. If my words can reach someone or help someone in pain, my day feels so much better.

[KATPILOT]

Yes Mitch,

Happy Belated Birthday and yes you have contributed greatly . Every thing we experience and learn helps us feel better passing it along.  I just received a book "Grief Diaries-How to Help the Newly Bereaved" by Lynda Cheldelin Fell. I have a lot to learn about giving the right advice and keeping my mouth shut but it helps to help. I must agree.  It seems the longer you are on this journey, the more you come to understand things even if you still are grieving yourself.

[MartyT]

Do let us know what you think of the book, Stephen, and whether you would recommend it as one we should add to our Grief Bibliography.

[MartyT]

Along those same lines, this is the second in a terrific series by Carla Cheatham via Hospice Times: Sitting with Pain: Week 2 of BE-ing with Suffering

[mittam99]

3 hours ago, KATPILOT said:

Yes Mitch,

Happy Belated Birthday and yes you have contributed greatly . Every thing we experience and learn helps us feel better passing it along. 

Thanks.

One thing you told me a long time ago helped me in my journey. You told me to remember that Tammy will always be with me. And that nothing could ever change that. That was a bit of an epiphany for me.

[Gin]

I used to be a docent for 22 years for the Frank Lloyd Wright Fdn. in a local suburb.  I went there today for a knitting club.  They knit things for the homeless, cancer patients, etc.. Driving home all the memories came flooding back.  I always called Al when I was done with my tours to tell him I was on my way home.  I just can't get away from the painful memories.  Actually those memories are not painful...it's today's thoughts that hurt so bad.

Gin

[mittam99]

Had a very intense, drowning in tears, stomach twisted in knots grief burst tonight. More like a grief explosion, really. It wasn't one of those triggers that catches you by surprise either, I knew this one was coming. I just didn't know how gut wrenching it would be. I was rocked to my core. 

For the first time in a while I decided to look at a bunch of pictures of Tammy. Everything from her baby pictures to the recent ones. That started the tears. What really got me crying to the heavens was reading a long letter I wrote to Tammy a couple months after she died. That brought every emotion that you could imagine out.  

I've been on this journey over 14 months and even though I'm "adapting", the pain and the longing for Tammy hasn't changed. She came into my life and changed me forever. Showed me love that no one ever did. Made me feel like I was something special.

My life moving forward will never feel anything remotely like the life I had with my Tammy. There will always be the lingering sadness of what should have been, but never will be.

[Clematis]

Sorry to hear that, Mitch-it sounds really painful. It's hard looking at pictures and not be able to see the person anymore. I think it's true the thing they say about how your relationship doesn't end when someone you love dies-it changes-but to something you never wanted. I feel my dad still with me, and I hear him talking to me sometimes, but it's hardly what I want. We became very close at the end of his life;  he was my best friend, the person that I told everything to, and the person who loved me unconditionally. It's really hard to lose all that-and you lost all that and a lot more. I don't think you ever "get over" a loss like that or stop missing the person. Losing someone who loves you unconditionally, like Tammy did, is a wrenching loss. I am sorry that you are suffering so.

[Finch]

Hi Mitch, I probably don't have anything useful to add but just wanted you to know I read your post and I'm sorry you are hurting from reading the letter and looking at the pictures, and I am thinking of you. Tammy and the special love you shared changed you forever and in that, she will be a part of you and with you forever and always.

[kayc]

Mitch,

I'm sorry, I know the pain all too well.  I was up with anxiety most of the night...if George were alive, I would have been snuggled in his arms knowing all was right with the world.  That was the last time I had that feeling.

[LAK]

I am new to this group and have been reading through several posts.  The article titled "Goodbye to goodbye" really hit home with me.  My husband was in a hospice facility for 11 days and was unresponsive the last 7 days.  I would talk to him every day, hold his hands, hug him, kiss him, etc. I did not leave his side for 11 days and slept next to his bed every night.   I would say one thing over and over to him, something like this:  I love you and I know you love me.  Thank you for giving me this beautiful life.  You've done a good job.  I'm going to miss you, but it's OK to leave.  I'll meet you there.

Several people at the hospice facility would ask me if I told him it was OK to go.  I told him that every day.  I was surprised he lasted so long while being totally unresponsive.  I asked them how it may be in the end, would he have a heart attack?  would he be struggling and gasping for breath?  They said maybe and that scared me.  I did not want to witness him suffering anymore than he already had.  Thankfully another gift he gave me was to go peacefully as I slept.  I felt his spirit pass over me and his strength come into me.  It was amazing.  I guess I never got to say goodbye either, even though I knew he would be passing soon.  I also knew soon after he did pass that his body was no longer "him" so I was fine when the funeral home came to get his body.  The facility he was in was part of a Catholic nursing home.  Two nights before he died, I had their priest come in and he administered Anointing of the Sick.  I was raised Catholic but my husband was not.  It gave me comfort.  We both anointed him and the priest prayed over me.  The priest came back the next day and talked to my husband like he was able to talk back.  That night he passed away.

A few months ago I went to a bereavement seminar and the man who was the main speaker kept saying over and over "Do NOT tell the dying it is OK to go"  Well, I felt strongly he should not keep saying that over and over.  All of us there had obviously lost someone and the staff where my husband was kept telling me to say those words.  I almost stood up and asked him to stop saying that, it only added to our grief and guilt.  I felt so strongly that I sent the presenter an email afterwards to stop saying that to people who had lost a loved one.

I think we all, as caregivers, feel guilt and always "what if".  There are images in our minds we can never erase.  There are inept medical people and facilities.  There are also many wonderful people who help us in our grief and try to move past those sad, dark memories.  I'm so sorry for all of us who have had our spouses leave us.

Linda

[Guest]

Linda-

You are so welcome to our group.  My wife was in hospice for eighteen hours before she died.  She was also unresponsive the whole time.  Her last words were when she was being transported to the hospice from the hospital.  She wanted to go home to Pinetop and was telling me her Daddy said she could so it wasn't all that reality based.  I personally think it is perfectly alright to tell your loved one it is okay to go and you have no reason to feel guilty.  I stayed with my wife for those eighteen hours and was holding her hand, telling her I love her as she died.  Our daughter was on her other side.  No one felt the need to say goodbye only that we loved her and how wonderful she had made our lives.

We were truly fortunate throughout the whole ordeal in that the medical people as well as the counselors, American Cancer Society, the numerous volunteers, the Hope Lodge; everyone we met, were compassionate, caring, knowledgable and truly angels on Earth.  For as ugly as her cancer was there were many positives I took from the hopelessness and the devastation.  I am amazed at the selflessness of so many people; those who give so freely of their time to help guide people through the worst days of their lives.  They by far out number the evil who tend to get the most attention.

[KATPILOT]

Linda I think the speaker who said "Do not tell the dying it's okay to go" assumes all death is the same and it's not.  There are times when it is appropriate. My mother died in her home with my dad always by her side. She was not awake and on heavy pain meds. He went to the store across the street for a quick errand and she left in the fifteen minutes he was gone. I had to tell him when he walked in the door and he never forgave himself for leaving. When my wife was dying in a hospice home, I was told by the nurse that they often wait till their loved on leaves the room. She said she sees that many times and believes they do so because they want to make it easier on their loved one.  I began to think in those last two days of Kathy's life as she was not conscious and it was only a matter of time, that maybe she was just waiting for me to leave. I sensed it too, very strongly. I knew her well enough to know that she knew how I would come unglued. I not only felt it was right, but I knew I had to do it. I told her it was okay to go and that I was going to take a walk if she wanted. I did but she didn't leave. She waited till I fell asleep next to her and then she left. She found a way.

I don't know if any of you have watched someone you love die but when my mom went, it was somewhat difficult to watch and hear her last few breathes. My dad would not have handled that well. I suspect it may have been the same for me when it was my turn.

[kayc]

Linda,

The man that told you NOT to tell your husband it was okay to go was way out of line, in my opinion!  I told my mom it was okay to go and she died shortly after.  I wanted to tell my husband it was okay to go when I realized he wasn't going to pull through (heart) but the nurse threw me off the ward and locked the door behind me, depriving me of that chance.  He died anyway, but I wish he could have done so peacefully without worrying about how I'd be.

Sometimes people hang on for those here when their bodies are no longer serving them.  My MIL was one of those, she was bedridden with cancer (liver, bone, etc), for almost three years and her organs began shutting down one by one, the blood no longer able to circulate Morphine through her body.  We gave her permission to die, with our pastor there, and it turns out she'd been holding on, unable to forgive herself and we led her through a prayer.  She slipped into a coma that night and died the next morning, peacefully.

You gave your husband the greatest gift you could when you released him to the next part of his journey, and I believe like you, we will meet up again.

[Margm]

 I never left Billy's side and when he was trying to tell me that he was giving up my emotion was anger toward him.  We were all exhausted.  I had had him at the chemotherapy group for three days with them giving him saline, and whatever was in the infusion they gave him.  No chemo.  But it allowed me to roll him in a wheelchair back to the truck.  He held his beautiful hands up to me in submission, I knew he was giving up and I was angry.  He could not give up.  The doctor Gods said we had months.  This was just days, just short weeks, not months.  I lay my head on his bed.  My stupid body gave out on me and I slept.  My last emotion to him was anger for giving up.  When I awoke less than two hours later he was gone.  The nurse said she had checked on him at 7:00 a.m. and at 7:30 he had his death mask on.  And my last emotion was anger because he had to leave.  I can numb-down sometimes and maybe one day I can forgive myself.  I know he forgave me, he always did.  Forgiving myself is the hardest thing, the most impossible thing I will ever have to do other than living without him.  

And Linda, welcome to our group.  None of us want to be here.  They say misery loves company.  I do not really believe that, none of us want you or anyone else to hurt like we do.  They called it CA of colon on his death certificate.  I remember as a child having a pet that knowing it was going to die went off by itself to die.  Yet, we humans do everything in  our power to keep them with us.  I let Billy's body go through horrible things, poking and prodding, days of exhausting tests knowing the end results.  Yet our animal friends know what is best.  At the end, it does not matter what the death certificate says, it does no good to question methods, diagnoses, the end results are the same.  None of us can live forever and I might have kept him longer, but to see him die as both of our father's died, if he had to go, then I guess we were allowed a miracle after all.  Now, we just pick up the pieces of this shattered million piece jigsaw puzzle and try to just find the corners and straight lines until it is our time.  I wish you as much peace as you can find.  I look for things that make me laugh.  Billy liked me to laugh and he loved hearing me whistle.  He knew I was happy when I whistled.  I just now thought, I have not whistled in over seven months.

[LAK]

Thank you for believing the same thing I did.  I think this man had only been at his mother's bedside when she died and from the MANY stories he told about her death, she was alert and active right until she passed.  This is not so in many cases. 

The night my husband did pass was a little different.  They had turned him in the bed to face the wall so I could not lay in the chair/bed next to him and be able to touch him as I had every other night.  For some reason that night I did not take out my contacts or put on my pajamas and decided to sleep in the window seat bed several feet away.  I got up around 11:30 to check on him and use the bathroom and he was just as he had been for several days.  I was pulled right off that bed exactly at 2 am on 11/2/14, which was when the clocks were supposed to be turned back.  As I said before, I felt his spirit pull me up and his strength come into me.  His time of death was listed at 1 am since the clocks changed.  The nurse that came in asked me what woke me up and I told her how I had felt.  She said "I believe that happens all the time" and I told her it was the first night I had not slept next to him and she said he was waiting to pass without you right there.  At first, I felt so sad about that, I hoped he didn't feel I had left him.  She said "No, he chose that time"   Now I realize it was a gift.  His last words to me also did not make sense.  He woke wide awake during the night several nights before he passed and I jumped right up and he was reaching for me and saying "I need you quickly, hurry" I looked in his eyes for the last time (which I didn't know at the time) but he was not "there"  I told him he was OK and I was right there and I stroked his face and he went right back into his deep sleep.

I felt so peaceful at the hospice facility.  The people there were so caring and kind to all of us.  It let me be just his wife, no longer worrying about his meds and being able to move him.  It was sort of a magical place, surrounded by so much sadness if that makes any sense.

Lots of grief bursts coming out today, but I'm letting the tears flow as they come.

Linda

[Froggie4635]

I want to post something before my widow brain forgets exactly what I want to express.  I have been doing reading not only about grief, but also the transition.  I believe that there are times when our connection to our loved one, in this forum it is our spouses we write about, are not ready to leave.  I also believe that it is impossible for them to leave with us there.  They simply cannot "walk away" in our presence.  There are so many stories shared about our loved one leaving when we leave the room, or the hospital.  They love us so much, they need to be alone to take that final step.  I truly believe that is what Mark did for me.  He was alive when he left our home.  He died en-route to the hospital; not so much around strangers, but when he was away from my soul.  So don't feel guilty if they passed when you stepped out.  Perhaps it was them who needed you to be away, so they could leave.  They know we love them...

[kayc]

Thank you for that, Maryann, I've always felt bad that I wasn't there when George passed, it was a choice that was taken away from me by the nurse and I still feel she was wrong to do that, but maybe you're right, maybe he needed me gone in order to transition to the next life, I still feel bad about how it happened though.  It wasn't how I'd imagine things to go being as we were always there for each other.  But there's so much I don't know or understand about the next life, maybe it's what had to be.

Linda, I'm glad you felt peaceful at the hospice facility.  I've heard others have a bad experience with them but I truly feel most of them are in the business they're in because they're caring, and yes sometimes they make mistakes, we all do, just as there might be a rotten egg in the bunch, but for the most part, what I've encountered are really wonderful people in hospice, I know they were great with my mom.

[Guest]

I have nothing but love and praises for the staff at the Lund Family Home run by Hospice of the Valley.  What an amazing group of people!

[KATPILOT]

No kidding! The Sherman house was the same. Very special people Hospice Nurses. Very special indeed!

[KATPILOT]

29 minutes ago, Froggie4635 said:

 Perhaps it was them who needed you to be away, so they could leave.  They know we love them...

They do indeed.

[MartyT]

Our friend and colleague Barbara Karnes, RN is a hospice nurse and noted author who speaks from years of experience in caring for the dying. You might take comfort in learning what she has to say on this matter of being present (or not) at the time of death: In Grief: Coping with "Moment-of-Death Guilt"  ♥