Can't stop thinking about this . . .

[stand4hope]

Hi everybody,

I just wanted to roll this past others who are grieving and see if anyone else feels the same way. More than my being sad because I'm alone and miss Don, I find myself thinking mostly about him and how he must have felt. This is the part that is tearing me apart.

I keep thinking that he just didn't know it was going to happen then. He really thought he had a lot more time left. He never got to talk to me again after the surgery - not one word, and he never got to tell me good bye. He sort of did when he squeezed my hand, I guess.

I know I'm rambling, but it just bothers me thinking about what was going through his mind during those two days. I keep worrying about how he felt. Did he know? At what point did he know? Was he scared? Was he sad? What was he thinking? I'll never know.

I just feel so bad for him. I know there are thousands of people that die every day without warning. I also know that, particularly in Don's case, this was the best way for him to go - no suffering and no having to give in to a weak body. I also know that he would have wanted it this way if he had to go, but I just keep getting the feeling that as he was slipping away, he was saying in his mind, "Damn! Damn! Damn!" and that breaks my heart.

Does anybody else think more about what your loved one was feeling than you do about you missing them?

Love,

Peggy

[Treebywater]

I Think about both I think... And I think I am more selfish in my thinking than you... But at the same time, I do have some of the same thoughts. I know Mom had been referred to hospice, so we knew it was coming... But she was only signed on for six days before she died. We thought we had at least a month or two of things slowly slipping away.

I was thinking tonight about when her sister was here, and her little brother and how she was making sure to say important things to them. I don't think there was a time before she left that she looked at me and gave me a "This is what I want you to know" speech. And I think she probably wanted to, but thought she would have more time.

The her part of her slipped away right after my aunt left, and I think she was thinking that she would save up what she had to say to Daddy and I until after she was gone. That makes me sad for her and for us. It makes me think she was probably very frusterated.

Mom was really unable to communicate too, and what I hated most about her last few days was that she wasn't her anymore, but the SHE was still in there. Trapped inside and unable to go on, or interact with us like she would have wanted to.

I think by and large what Don was thinking--especially in those moments when he squeezed your had was, "I love Peggy so much... And I am so glad she is here with me, and I might have wanted to say more, but I know she knows...."

((((((Peggy))))))

I was telling another friend today, I HATE this disease and what it's taken from us and from our loved ones. I just hate it.

love,

Val

[shirleyb]

Peggy,

I too have these thoughts. Especially right after Randy died. The difference is Randy had thrown two blood clots to the heart and he had a massive heart attack because of it. I was with him when this all took place. The last few minutes he was in such pain but then he opened his eyes, looked at me, and was gone. My comfort in this was that everytime I left his room, I told him I loved him and he did the same. When I left the room to get the nurse and then came back I told him I loved him and to just rest. Even though he was in such pain he told me he loved me too. It was only a few minutes that felt like a life time. I know he had more to say but the most important things had been said. I found out afterwards in talking to the kids that Randy had expressed some of his wishes and so that also brought me comfort. But still.....

In time I have come to understand how important it is not to wait to share what we are feeling about those we love. I have learned not to hold back what I want my kids to know. It has helped our relationships to have this out in the open. I think just about everyone of us that has lost someone suddenly, goes through this. We hope they knew we were there and that we/they understood.

Like you said though, we will never know what they were thinking or feeling at the end and that can drive you kind of nuts worrying. At some point though, you come to accept what you will never know and you find comfort in what you do know. You know he knew you loved him. You know he knew he loved you too. The rest has to be let go. Time has a way of helping us get to that stage. And we go on....surviving.

May you find peace in remembering all the good things you shared together. May you find peace in knowing he knew you were there for him.

Much love and warm hugs. I do understand what you are talking about.

Shirleyb

[LynneH]

Peggy, I have had too many days of those exact thoughts you are expressing. It brings much guilt and sadness. It's been almost 6 months and I had a new, horrible thought the other day, out of the blue. I started thinking that I bet Jim was wondering what was happening to him and I never talked to him about why he was back in the hospital! Now, I have no idea if he was thinking that, but in the shower the other morning I cried my eyes out thinking that I had not given him answers.

For the most part, when Jim went into the hospital the last week, he could not communicate. He could hear sometimes. The first few days, he would try to verbalize, but you couldn't understand his words. And, his eyes could not open but he would try. I know neither of us thought we were so close to the end, but I've discovered that most people never really think 'okay, it's here now'. Perhaps that would be too much to bear.

So, some days I long for him and his wonderful company. Other days, I have the sadness for him that you describe. Wondering if he was scared. I know that time has helped in one way, and I think this will come for you too. You will still have the same thoughts you expressed, but then you will remember that you were there with him every step of the way, that he knew that, and that you and he did everything you could. And you will know that the sad thoughts and 'what-ifs' are just part of this horrible process we have to go through.

I talk about Jim a lot (with those that don't just freeze up at the mention of his name) and I putter around the house smiling at the words I know he would say about something I am doing. That's not every day, but some days. Peggy, I wish you more of the memory smiling days and less of the sadness. I offer you my biggest, warmest, HUG.

With love,

Lynne

[Patkid]

I have no wisdom.

I still wonder things like this about Tom (my husband who died in 1993).

I just want to say that I understand, I care and I am so thankful we have each other.

I am praying so hard for all of us to feel the love God, our Abba, our Father, has for each of us and that we find peace in knowing that our loved ones are in His arms, at complete peace and that they, now, understand and know everything. I bet they are smiling indulgently at us thinking: 'soon you will know, be patient and trust'.

Love

P

[J.C.]

We knew the end would come but we got

both surprised the way it happened.

On October 6th, Mike looked like his picture,

the day was spent talking, reading, eating

and walking. (wheelchair only outside)

That night I took him as usual for a spin

in his wheelchair and later in the evening

he went to bed, I kept an eye on him all

night as usual. He slept normally.

Next morning, he woke up unable to get up,

unable to speak and his eyesight was bad

his hearing perfect.

All that in a period of eight hours.

He just made the motion of writing something,

I gave him paper and pencil and the best he

could do was: No hospitl

I told him never and he wrote: Thak tuu.

I still have his note.

During the days we had two nurses and an

aide to take care of all his needs,

he smiled and tried to laugh all the time and

always he had to touch our hands as thank you.

Days and nights I stayed with him and with

the music he liked so much as background,

I read to him, spoked of all the good days and

years we had together, farms, animals, dogs

everything from the past and kept saying how

much I love him, he kept squeezing and kissing

my hands.........now I'm crying.

The pain was now under control with a

morphine pump and he was on oxygen full time.

And on October 12th midnight he felt asleep while

I was reading to him, holding my hand and

he never woke up, I just felt his hand getting

cooler, I knew it was the end.

Those days are so much on my mind that I

live them over and over again.

Now I'll have my fit of crying and get ready

for my afternoon of volunteer work thinking

of him.

Those tears are not from sorrow but happiness

that I could be with him.

J.C.

[Ann]

Gosh, Peggy. I know this is something we all think about. Let me tell you up front that you can't beat yourself up wondering about answers to these type of questions, as we will never really know the answers. You need to remember what a good wife, friend and caregiver you were. There was nothing that you didn't do for him. I know that he knew you were always there with him. I know that my Dennis was a fighter and never openly accepted the fact that things weren't going well with his treatment. He only once even mentioned death to me and that was a "what if" phrased question. After reading all of the literature I could get my hands on from Hospice, I try and think that the days/hours prior to death are peaceful. I don't know this factually, but it sure helps me deal with everything better if I look at it this way! I'm sending hugs your way and saying prayers that God will help you through this.

(((((((((((((((((((((((PEGGY)))))))))))))))))))))))

[stand4hope]

I'm at work and should have waited to read your responses until I got home tonight. The tears are gushing down my face - and there goes my makeup - AGAIN!

This has been a really tough issue for me, but I guess when you stop and think about it, it's probably the way it is most of the time. Every one of you have experienced this same pain, and I'm so sorry for all of us.

Thank you all for reminding me that I loved him and he knew it, and he loved me and I knew it.

May God bless all of you - each and every one!

Love,

Peggy

[Jana_W]

Peggy, I think about this ALL the time. All the time. It is constantly on my mind and I find it very uncomfortable. It is the biggest thought I have when I think about Mum at the moment. I look back on things and realise that it was probably obvious to everyone that Mum was deteriorating (even though I seemed somewhat oblivious to it), so therefore I think she must have known. But even in the week before she died Mum went (with great difficulties, physically) to a Palliative Specialist for a report to be written on her suitability for further radiotherapy treatment to help alleviate some of her weakness and other symptoms. I feel that Mum must have felt she still had some chance to keep going for a good while longer if she would have bothered with that. But it breaks my heart to think that just wasn't to be. And at what point did she realise that? I truly don't know the answer to that. I am rambling a bit now myself (can't sleep tonight, having a very emotionally tough night), but I hope you can understand what I am trying to explain. We also never said goodbye. I have had friends ask me "Did you get a chance to say goodbye?". But when could we have done that? We never knew when she was leaving us until it happened.

Peggy, I see the pain my Dad is in after losing his wife. My heart goes out to you.

Love

Jana

xxx

[cathy]

Peggy,

You are not alone in thinking those thoughts and I am so glad you asked..I think about it all the time, I have even tried to put myself where my dad was during his last days, its like I need to know how he felt..

Its very hard watching a loved one go through cancer, and ultimately lose the battle..I have to say I never thought anythinng could hurt so bad..

I try to put myself in my moms place and cant imagine the devastation of losing the love of your life, my heart goes out to you Peggy..

[nancy c]

..that I think everyday of the day Mike died. I was getting ready for work, not having a clue when I saw him a few hours later he would be in the recliner gone. I told him that morning before I left, to keep his O2 on. He shooked his head no. I told his son to hit that morphine pump every 15 minutes for an hour to keep him comfortable. Mike's hands were so swollen he wouldn't even feel his fingers. He did so, and Mike slept for about an hour. Then woke up and talked for about 20 minutes. Then asked Shane to hold his hand. Shane asked him if he could feel him squeezing Mike's hand. Mike said no, so Shane squeezed harder. And asked Mike again"can you feel my hand?". Mike shook his head" yes"and coughed twice very hard and died....what was going on his head I'll never know. Did he know when I left that day..that he was going to die a few hours later? What made him ask his son to hold his hand as he was leaving this world??? Did he see God and know it was time?? This all causes me so much pain. I was up with him alittle while during the nite, with Shane. I didn't even think to call work in the morning and say I'm not coming. How could I have not known??

All this guilt tears me apart. Mike and I always said if one of us became terminally ill..we would not say "goodbye to each other" So, there was never a goodbye.

Love to all of you, Nancy C

[Pam]

OH do I ever know what you are talking about....it's constantly on my mind too. I lay still in bed, and wonder how much pain he could feel, even though the Hospice nurse said she kept him "comfortable"....I wonder if he could think about what was happening...I want to know if he knew he was dying....did he want to say something to us? The nurse said he had slipped into a coma...could he hear us? Did he hear us cry and tell him how much we love him? What was he thinking? Could he hear the last rites? Was he willing his body to keep breathing? He only woke up once, and reached for me, but his hand dropped before he could touch me and he fell back into his coma.....the nurse saw it but I had my head on my daddy's arm and was crying so hard, I missed it. OH God how I wish I could turn the time back!! Give me that moment one more time, give me a chance to be looking at him and grab his hand.....it just tears me up.

He is constantly on my mind. This past weekend, mom threw me one of dad's old t-shirts to use for painting. But as I picked it up and held it in front of me, I breathed deep, and I could smell him perfectly. It was my dad. That wonderful smell, of probably Tide and his aftershave....but it was my dad. And I haven't smelled him in almost two years. God does that hurt. I put it away (kept it and hid it) before I made it soggy with tears...

I will never get used to this pain. It hasn't gotten any better or easier and frankly I don't care. I miss my dad and it hurts!! He was too young....everything he's missed out on...it's not fair to him....I don't care about my pain, but what is tearing me up, is how he looked forward to this time of his life, and it was cut short, and oh how he would be enjoying his grandkids...it's not fair...to him or them!!!

So after almost two years, I'm still deep in grief. I'm still angry. And I still cry - a lot. Mostly when I'm alone though.

As much as it hurts to sit and write this down, it helps to know I'm not alone...so I thank you, Peggy, for bringing this up.

[Patkid]

Every one of you is so awesome and so loving.

thank you for being here.

P

[lilyjohn]

When Johnny died it was those thought that drove me crazy. I couldn't think about him without those questions. He was so sure that he was going to get better and he wanted to live so badly. His last two days were not good days. Believe me too much morphine does not always make for a pleasant death. Johnny's last day was pure torment for both of us and neither of us knew it was the last day.

The only comfort I have had is in believing that because of the way he died he didn't know that he was dying. Any other thoughts are just too much for me. They haunt me still and it has been nearly 3 years. I always pray that somehow he knew that I was with him until he breathed his last breath.

Everything about this is just so hard. We move forward but our hearts stay in the past. There is just too much pain to overcome. I can't even imagine what it must feel like to know that you are dying. I just need to believe that Johnny didn't know.

[Fay A.]

Peggy,

I recently faced death, wide awake. I had been given no kind of sedative medication on August 17th for the Fine Needle Aspiration Biopsy. So I was wide awake and in full possession of my mental faculties when my lung was torn. At some point I will go into detail of the events that occurred, but for right now I will say only that I was drowning in my own blood, and the suction could not keep up with the blood loss well enough to allow me to breathe. This went on for some time, and I did not panic. Peggy, when life threatening-life ending events occur I think we are aware of what is happening. And how we handle that knowledge is dependent upon our beliefs before we're ever in that position. He may very well have been saying "...Darn...", but he may also have discovered that his Faith is/was intact and helping him to make the transition from this life to the next.

That's what happened to me. I was dying, and I knew that I was in God's Hands, whether He brought me through the experience back into this world, or carried me into the next. I think your Don knew, and I believe he sends you his love and hopes that you will soon find peace.

[bunny]

wow, Fay.

Peggy, I've hesitated to respond here because I have no personal experience like yours but I have heard what Fay describes from others who either came close themselves or were with people who were able to express their process...and the pervading feeling I've heard expressed is calm.

but, wow, Fay.

xoxo

bunny

[paddy]

Hello Peggy,

I am back on line again at last! My thoughts and prayers have been with you and all our friends while I have been away. I want you to know how sorry I am for your pain. I wish I could do something to help.

I used to think exactly as you and it caused me so much pain, however, lately I have realized that even if I did know the answer to all those questions it can't help Dave now, and certainly would only cause me more anguish. I try not to re-live all the awful stuff,( although I often lapse,) and try to think of the happy times. At first I couldn't do that but now they are coming back to me.

Although Dave and I obviouslly knew that it was a definate possibility that he would die, I don't think either of us accepted or believed such a horrible thing could happen ever really to "us".

As a result of his up-bringing David always found it difficult to express emotion. He would always say "We haven't been married for 40 years "not" to know exactly what is in each other's hearts. I understood that, but still,I would have liked to have heard him say "I love you" more often, instead of answering me with an, "I love you too" or a "like-wise". Why did I expect that would change at the end. When I was sitting stroking his arm just before he died, (I couldn't get closer because of all the tubes etc,) I told him how very much I loved him and how much I would miss him,and, looking at me with his soft, hurt, brown eyes he said, "Like-wise" and went back to sleep. He died an hour or so later from a heart attack. I smile now when I think of that because it was so "him"!

Peggy, I will PM you soon.

Love,

Paddy

[ginnyde]

I just had an amazing awakening of peace by reading all of these responses.

First, like Paddy's David Earl was not overly emotionally, except that he did tell me he loved me constantly. For that I am forever grateful.

We never discussed his dying, don't know why.

But, his last day, he was unconscience all day, really couldn't be aroused. About 8:30 that night, he opened his eyes, puckered up, kissed me and told me he loved me. He continued to stare at me for a very long time but we think he had really had a seizure or something and really was not seeing.

I just realized that he probably forced himself to awaken so that he could kiss me and tell me he loved me, I think his way of saying "See you later".

[Patkid]

Fay,

What comforting lovely giving honest open generous words.

Thank you.

I will always have a copy of your post at arms reach.

Love

P

[Ann]

Fay and Paddy...what beautiful posts. I am so glad we have this place to share our feelings and help each other through the bad times and rejoice together during the good ones!

[BeckyCW]

I'm sorry I can't even read past the first couple of these posts yet, although I know I will later. I try very hard not to think of what was going through David's mind those last few days, or what he was feeling, because I (we) couldn't take any of the pain (physical or emotional) away from him, and I (we all) wanted to so badly. We couldn't even hug or touch him much because of the pain. I lie awake at night thinking about it, I wake up thinking about it... those are my worst nightmare thoughts. How I wish he could have just gone to sleep. I try to remember the peaceful look on his face when he went to heaven and just focus on that, but he just had to go through too much -- for a long time, of course, but especially those last few days. I've never wanted so much for a "do over" - to just erase that time and have it all go differently, with more peace and less pain. But I do know that David went through it all better than anyone I've ever known could have. It still kills me.

BeckyCW

[Fall54]

Dear Peggy,

My Brother and I were so very close and had been all our lives. We talked of everything and anything and never ever held anything back. This was our gift.

When Alan got sick, he knew why I was traveling from NH to Maine a 3 hour trip every week to see him and spend days with him. I waited patiently for Alan to talk with me about how he felt, if he was scared, what his wishes were etc. It never happened and It was the hardest part for me as I wondered why we had talked about everything in life but when it came to this very important time in his life, he was unable to talk about it. I would bring things up and he would answer quite vaugly and that would be the end of the conversation. It left me crazy wanting to talk with him and for him to be able to unload all his feelings to me so as to make it better for him.

A few days before he passed away we were out riding and we did do some talking and he told me his wishes but in a matter of fact way and he only said "IF" something should happen. He did forever tell me he felt his body dying. I wanted to talk to him about that so he could bear his soul but I believe this is how he wanted to protect me by not talking about it as he knew how very hard I would take losing him. He once pointed at me and said "It's you and Mom I worry about the most". He also said "I don't want Mom to die, just because I did". So, he knew and kept most of it 99% of it to himself to protect us. I wish he knew how much I needed to talk to him so I could comfort him, but because I was trying to respect his privacy I held back from coming out and sayin "ALAN!!, Please talk to me about this, let me help you bear you're soul, let me help you by comforting you so you dont feel so all alone in this, just to protect us!"

The day he passed I held his hand all day and until 10PM when he took his final breath. He knew I was there and that my Brother was there also. He also knew the rest of the family was on their way driving from NC. No one knew it was the day he was going to pass until the day wore on.

After his passing I think this has bothered me worse than losing him. The fact that we could talk in life about anything until it came to this. I just wanted to scream Alan, why?? Why?? Why didnt you let me help you. let me help you by letting you talk and tell me how you were feeling etc.

I have accepted the fact that I know he was protecting me, and this was his final act of love for me. It took a long time to get here though.

As we all know everything happens for a reason. I will see my Daer Brother again as you will see you're Dear Husband and we will have all the time in the world to do that talking and ask those questions. That is what comforts me.

I love you Peggy and I pray for peace for you and you're Son. Yes, he knew you loved him, and he knew you knew he loved you. They are unspoken words, things that are just facts and we just know.

God Bless you and you're Son Peggy,

Jane

[staceyabee]

Hi Peggy,

I just lost my dad and know where you're coming from. My dad's decline was very rapid and we had to put him on a ventilator. My parents never really discussed whether he wanted these measures, but we wanted to give him a chance to rest and give my brother a chance to travel home to see Dad. Once my brother was home and it became clear that Dad wasn't going to get better, the doctors asked us about extubating him. We were discussing it in his room and I remember thinking, can't he hear us? What if he's screaming NO inside his head. But, I have to trust that he knew how dire the situation was and that we were just putting him in God's hands. The doctors had said with or without the vent, he would die in a few hours. We didn't want to prolong his suffering.

I'm not sure about your faith, but I strongly believe that Dad is in a better place, as I hope is your husband. And I hope that, if in their last moments on earth, they were scared of confused, they are at peace now and know what is in our hearts. We said our I Love You's because we knew the situation was bad, but we all that Dad would be coming home, at least for a few weeks. But had I known he'd die the next day, I would've said so much more. I just didn't want him to think I was giving up on him. But now that he is in heaven, I know that he knows exactly what is in my heart.

So, please trust that your husband is at peace and be kind to yourself. Try as best you can to focus on the happy stuff, not this stuff that can't be changed.

Wishing you peace of mind and heart,

Stacey

[ellakc2]

Hi Peg,

I felt the same way when my dad passed. He died in

1999 of pancreatic cancer. (ugly) Espically when I was dx I knew then how he felt. What a way to find out. Your in my prayers aways and I think of you of and your son often. You were one of the first to post to me when I came on line. Take care Peggy and I pray you find strength.

Love ya,

Mare