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Reply by Saara
07 Mar 2017, 5:56 AM
Cherel, it is so helpful knowing that others have been through this, and understand how difficult it is.  What was it like for you after your loss? Were you able to make sense of your husband's denial and come to peace with it? Or did regrets remain, and need to be worked through as best you could?

Wingman wrote on Aug.3, 2016 "I am in a box. I usually exist in a circle...". I am so deeply touched by those words, they struck a deep well of emotion in me. I feel like my world has been restructured without my consent, hard edges and unforgiving angles replacing the contours of a more forgiving time and place. Time has become a finite dimension, rationed now in injections, appointments, scans, drips, pills..

Small wonder denial plays such a role, yet I cannot equate denial with hope. I fear that too much will be left unsaid, too many loose ends will be left for me to knit together, his children overwhelmed because they could not accept their fears, nor he his. Yet slowly, my husband is accepting help, acknowledging his limits and moving away from anger to something gentler. Perhaps acceptance is edging closer. 
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Reply by Cherel33
07 Mar 2017, 1:06 PM

Hi Saara,

Your questions are thought provoking. I think of all that I went through and all that I am still going through. I will gladly share anything I can, to help you on this incredibly difficult journey you are undertaking. You and I are in different places on this road.

Although, I have been grieving for a long time my loss is relatively recent. My husband of 41 years passed December 29, 2016. He died never having spoken of our life together or the three wonderful children we raised. He didn’t talk to me about “arrangements” or my future life without him. There was no closure for me. I came to an understanding with myself, that I would take on the responsibility of easing his passing as best I could. I lived in his pretend world, but also my own.

I made all of the arrangements for him in a book titled “Dave’s Funeral”. I also created my own book of, “What do to now”. I started both books in the spring of 2016 when we were given his prognosis of six months to two or three years. I knew myself well enough to know that I wouldn’t be able to make well thought out decisions when I experienced the devastating loss of him.

There are few people who could understand my thinking, few close to me that I could share with.

I found his passing was easier emotionally for me when I knew exactly what I had to do. I could reflect on our lives together. I didn’t have to delve into the minutiae of a funeral or wend my way through the legal and financial aspect of a life well spent. I’m still dealing with the latter, but gradually working my way through the steps I created, checking them off as I go.

And I am still working through his denial and my acceptance of it. There are good days and there are bad days. Thankfully more good than bad.

Do I have regrets? No, not in the least. I did everything in my power to ease his passing.

Something that I experienced:

“It is said that, "A true friend walks in when everyone else walks out". I have found this to be true. You don't realize this until you experience something like we have. Friends and relatives who I thought would be by my side, either created hardships for me or walked off into the distance. And some stayed and helped with kind words and deeds. These are your true friends. Treasure them.”
My “true friend” said something to me that I will always carry in my thoughts. She said, “Don’t say anything to him that you will regret later, I said something to my husband that I will regret till the day I die”. I held onto that thought when there were days I was so angry, I just wanted to yell and scream, “you’re dying, please talk to me”. I stayed silent, for him I lived in the present.


I’m truly happy, I held my silence. My anger would have only created more angst in the future. We parted in love as he quietly slipped away, finally accepting that he was dying.

I have to work on closure for myself and I am a work in progress. With everything I’ve gone through, I am stronger for it.

If you’re interested I shared some of my journey in “I am living with serious illness”, Caregiver living with husband’s denial 15 Jun 2016


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Reply by Wingman
07 Mar 2017, 4:57 PM

I am appreciative of the insights you have shared here. I have been struggling with the resentment  I feel regarding my best friends denial. These feelings didn't seem to trump my emotions until now and I didn't expect them. As you had mentioned, we also never had talked about life after she was gone. There was much left unsaid and many ends to tie regarding her estate- which was neither small nor simple. We didn't even know where she wanted to be buried. I was left feeling........*We had two years to plan for this.....we had two years to provide a sense of closure FOR ME*- but we did not. In the months that followed, we made the decisions we thought best as we dissembled piece by piece what she had spent a lifetime putting together. I too balanced living in her world as well as living in mine. 
I am encouraged by your peace with your silence, and in what your friend said regarding saying things you would later regret. I have often regretted what I didn't say- I hope to make peace with that at some time.  
I was there with her every step of the way- I am Wingman, that was my role and I am grateful in knowing I did ease much for her- but I am left now with a loss of closure and a resentment I want not to have. I sometimes feel she denied herself peace, and appreciate what Saara said about equating denial with hope. 

Saara, I am thinking of you as you are going through where others of us have been. It is most difficult to make sense of the things that control the days now and we run on instinct and survival. I am grateful to hear that your husband is moving towards a gentler place- my hope for you today is that you can both inch towards peace.
In my thoughts.
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Reply by Cherel33
08 Mar 2017, 12:31 PM

Dear Wingman,

As I travel my own road, learning and accepting, I think of others who have suffered as I have. I’m sorry for your loss and my heart goes out to you.

I too was faced with what would he want and what feels right to me. Knowing I couldn’t ask, I based my decisions on who he was as a person. Delving into the writing of his eulogy helped me to better understand who my husband was before he became so ill.

You said,” I have often regretted what I didn't say- I hope to make peace with that at some time”. But if it was unsaid, did it need to be said? By saying something, what would it have changed? Who would it have helped, you or her? I think in many ways we are speaking through our actions. Maybe she did deny herself peace, but that was her right. She knew you were there for her. She knew you had the strength to carry on.  Maybe your anger and resentment is your task to bear. To work through these emotions, to find out who you are and how you view yourself.

I believe that things happen for a reason. They are the culmination of our choices. We have to learn to accept the decisions we have made. We are continually moving forward to a better understanding of ourselves.

I reflect on the quote by Reinhold Niebuhr:
“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”.

Saara, I think of you and what you are facing. I remember the movement from moment to moment, the racing to appointments, the researching and running spreadsheets. I realize now it was my way of trying to control our lives and the outcome.


Your husband’s acceptance of help, is his understanding of his frailty and his need. Something maybe new for you to adjust to. No longer is he equal to you. No longer do you support each other. You are supporting him. Realize you have the strength and you have the support of others that have gone before you.



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Reply by Saara
10 Mar 2017, 4:55 AM
It is such a relief to know that I can speak my truth here, and that you have walked this path before me. Your wisdom and kind words are a source of strength in difficult times. I have a question  and your perspective would be helpful. My husband tells me that he is depressed, that nothing interests him, that nothing matters. Is this truly depression, or could this be detachment, a part of the process of letting go as he approaches death? 

Did you experience years of anticipatory grieving as well? The man I knew and loved, who worked beside me and with me, died years ago. Equal no more, that is a hard truth and a bitter one for me. We were a team, he and I, and I miss him, even though he is here with me still. 
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Reply by Cherel33
11 Mar 2017, 12:31 PM

Dear Saara,

Your husband is able to tell you he is depressed and he probably is. How could he not be?
Clinical depression walks hand in hand with so many chronic conditions. It can be caused by an imbalance of chemicals in the brain. With chronic kidney disease, the kidneys are unable to filter all the toxins (Urea). Depression can also all be caused by difficult life events. He is facing both as my husband did before him.
A real detachment is being able to step back and reflect without being associated with any desired outcome. I think the detachment you speak of is when they are no longer cognizant of themselves, unable to think beyond the present. I saw that in the last few weeks as the toxins overwhelmed my husband’s body. I did palliative care at home where I was continually watching him pass through the various stages, researching to try and better understand what was happening. It is so difficult with co-morbidities, when the body is being attacked from different directions.

Your question about grief gave me pause for thought. Reflecting back, I wonder if this was the beginning of grief for me. In 2007, my husband Dave lost his older 58-year-old brother to undiagnosed medical conditions. Dave slipped into depression realizing that he was part of a second generation not to live past 60. At the time, he said, he’d die before he reached retirement. In 2012 he lost his 54-year-old sister to CAD and kidney cancer, another chink in his armor. He reached retirement, but yesterday would have been his 66th birthday.
I know now that I was angry and sad for the relationship we were losing, but we were still trying to maintain, still attempting to connect. I more than him. I often thought why am I fighting, why am I still with him, but I still loved him. He was lost within himself and I grieved for who he once was.
The spring of 2014 saw him complaining of leg pain and there began our journey through the medical world. That fall he took leave from work hoping to return. Together we fought his battles, I more than he through appointments and surgeries.
By 2015, he was wallowing in despair, refusing to discuss anything related to his present circumstances or to our future. He was not interested in reviewing test results or hearing his diagnoses. He just followed the doctors’ and my dictates.
In 2016 his cognitive thinking became impaired which was unacceptable to him and he strived to find a miracle cure. Our house became a popular destination for delivery services with packages arriving weekly. He only spoke of unachievable goals for himself, buying a motorcycle, re-staining the deck etc. Here was a man who couldn’t walk more than 20 feet, but these were the types of things he thought he could do.
I grieve for the man I was with for the first 30 years of our marriage not for the man he became in the last 11 and I have to come to terms with that. 


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Reply by Marymary
15 Mar 2017, 5:30 PM
Cherel - I so want to say thank you for your words they mean so very much to me right now.  They make a difference - they so do so thank you.  

You stated:  he was wallowing in despair, refusing to discuss anything related to his present circumstances or to our future. He was not interested in reviewing test results or hearing his diagnoses. He just followed the doctors’ and my dictates. 
In 2016 his cognitive thinking became impaired which was unacceptable to him

These  so help me for we are in this situation and have been for almost 2 years now and we had a situation happen just this morning with my son's dad (my ex) & it was a big flag and required medical attention.  He is in DENIAL makes things way less than they are - why?  I ask that question a lot.  WHY?

Does he do it for us?  So we will not be so stressed out?  Does he do it for himself - so he is not so stressed out?  Denial not accepting is how I see it.  I personally feel it is for his OWN state of mine, so he can continue on withOUT being this "cancer/sick man".  So makes sense today....He gets real pissed off moreso with himself well his body and yes because he misses who he use to be..the way he is hmmm?

I am kinda relieved he is not the only man who handles this the way he does, I know that sounds wrong or selfish or not right some how but it kinda comforts me at this time and maybe others too.

There is a real cause for concern today with his health and all he says to me is NO NO NO....he is scared, he does not want to acknowledge that part - I get it.  I always thought he was & has good reason to be scared of the hospital and does NOT want to be there so he does not share his real pain with us nor the doctors til he gets past the point of something.

But what you say makes so much sense - he has lost his sense of "SELF" which to me is why he gets so upset/mad.

So thank you so much for bringing insight today for me, I NEEDED to hear those words which brings new perspective. 
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Reply by Cherel33
17 Mar 2017, 11:37 AM

Hi MaryMary,

I’ve read your words and have thought a lot about what you were saying. I have believed for a long time I was alone with my thoughts. To be able to share words with someone in a similar situation means I’m not alone and neither are you. I continuously waffled between is he doing this to protect me or himself?

It breaks my heart to say it, but I believe he was only concerned for himself. He was scared and unable to share his feelings. If he couldn’t admit it to himself, how could he admit it to me?

You said: “Denial not accepting is how I see it.  I personally feel it is for his OWN state of mine, so he can continue on without being this "cancer/sick man".  So makes sense today....He gets real pissed off more so with himself well his body and yes because he misses who he used to be. The way he is hmmm?”

I believe you are absolutely right. This is very similar to the situation I was in. And I too, am relieved I wasn’t the only one in this particular situation. I came to understand that if he was protecting me then he was cognizant of the situation and was admitting his fears.

The pinnacle moment for me was when I took him to the hospital knowing there was nothing they could do for him except make him comfortable. Hoping for help, hoping for someone else to take on this responsibility. When he refused to stay, asking only for pain medication for his legs, I knew.

My role was to comfort and help him through this difficult life passage. There was no thought for me. No thought of the hardships I would bear caring for him.

Coming to terms with that has been incredibly hard. Few understand, when you’re in this position. It’s not sharable with your children as they are coming from a different perspective. Friends try to understand, but they really can’t if they haven’t been through something similar.

I had to learn to accept this wasn’t about me and it wasn’t the two of us together. I had to play a supporting role as you would with a child. I realized if he wasn’t going to be concerned for me, then I needed to step up to the plate and think of myself. I did everything I did from palliative care to making all the arrangements for his funeral not just for a sense of love or loyalty, but also so I could live with myself after. So, there wouldn’t be any recriminations nor would I feel guilty in anyway.

Almost three months later after his passing, with no closure, I’m learning to accept what happened. I have no guilt, but I grieve for who he was not who he became.


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Reply by Marymary
17 Mar 2017, 4:32 PM
Thanks Cherel33

Funny you say he only was concerned with himself....my sis & I were talking yesterday and she said the same thing.  She said Mary he does not give a shit anymore period, he only cares about himself nothing else matters, no concern for you or our son but himself.  The way he speaks the way he conducts himself and shows no remorse definitely NO RESPECT for either of you because his opinion his life is more important.  He has actually said AT TIMES not all the time, I am the one who is fighting for my life here I am the one with cancer I am the one who deals with all the doctors and I am the one blah blah blah.  His self and has not and will NOT ever say sorry for his ways and hasn't since Day 1.  So you will have to accept he is only caring about #1 in all ways.

I really reflected on what you said and what she said and yes it is true.  I always pray to MY creator that I have more compassion and understanding and that I can assist or be there  when NEED be and refuse to argue or get involved in arguments or what have you.  I swear sometimes he WANTS to argue because it brings more to his LIFE - weird I know but it comes across that way, it is a lively discussion and he always loves to prove a point - to be right way before this cancer crapola he always wanted to be heard and that is all that mattered everyone who was in ear shot has NO choice but to hear HIS opinion.  He would talk over everyone and did not listen to people but listened just to respond.  That was why we split up back in 1999 to begin with.

As for him dealing with dr's etc well he did that himself he chose that avenue, he wanted to go by himself & told the dr's to NOT share info with myself or our son, for we went last March or May last year and we asked questions and they looked at him first and p[aused then just talked around our questions, so he obviously told them not to discuss his illness anymore with us.  It was so very obvious.  I've tried to NO avail so I gave up on that aspect.  

But all I can do is be here to help our son and be there for him to a certain extent his dad too as for his dad but I will NOT take any crap from him in regards to being disrespectful and being an "ass" to me or our son when he gets in his moods which seems more often than not.

Last sunday he did not like what we were discussing and said we were wrong and it was not right and his opinion was the right one and we were not listening to him then proceeded to say he didnt want to talk no more to us.  My son was great he said mom it's because he chooses not to discuss this anymore because ONLY he is right and  ONLY he is allowed an opinion.  He will not and chooses not to see other peoples point of view.  Boy did his dad get mad and screamed at both of us and told me to get the hell out of the f'g house and that it is wrong that I SIDE with my son.  I told him it is not a matter of taking sides it is a matter of respect for another person and sharing ones perspective on the matter, everyone has a perspective NOT only you period.  Anyway so that shut him up and we all went in our separate rooms then my son went out then I went out and his dad chose to make dinner at 7pm & proceeded to get mad at us because we were NOT there to eat and to get our asses home.  Ya it was jsut a great day (NOT).....but one day at a time our son and I both agree let things go and that was sunday and we go day by day next day his dad was feeling guilty and shareful you could see being nicer and that his way of handling the day before like it's all water under the bridge and today I am nice so talk to me now.  (oh my lord).

Sorry went off there but you get my drift.  He is as you said all about himself and he will say it every now and again I am the one dealing with cancer here so there.  he does admit it but does get quite selfish about it too.  I don't think as you say even has one iota of a thought that his son and I are also going through things also, definitely not to the extent he is mind you but ya HMMM?

Good talk / discussion - I will have to think more on this I'm sure a few others may be dealing with the same sort of thing...but day in and day out for 2 year now with his anger towards his own body does takes it toll - it sure does on him, his son and me too.  So we will get to the point of shutting down or getting mad, we all do it not just him.  I don't get mad too often but will stop discussing things or sharing things

So thank you for listening and pointing things out for they certainly do make a difference Cherel they do.  I thankful this site is here for I know we are NOT the only ones who have the situations that come up others do too.  So THANK YOU
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Reply by Cherel33
18 Mar 2017, 3:50 PM

Oh Mary, I have the deepest empathy for you. I understand some of what you are going through. I have travelled your path. Your husband is so angry. He is railing at the physical injustice of his disease. He’s threatened and trying to block his fears by lashing out. He feels powerless. I believe people instinctually react with self-righteous anger to negate this feeling. Anger is condescending and demeaning. Anger makes us feel superior to another giving us a sense of power. As loved ones of an angry person, we understand the core of this and are hurt by the anger. We realize that in order for our husbands to admit to being angry, they would be admitting to vulnerability and accepting the influence of the disease on them. With denial, that’s just not possible.

Although, we want a safe comforting relationship, we have chosen to remain with this person to help them and comfort them. Our roles are changing from companion to parent. We learn to accept them, understanding the anger and acting out, for what it truly is. We learn a greater understanding of empathy and compassion. No matter what is said we have the capacity to heal and they don’t.

I realize it’s hard to have compassion for someone who is continually battering us with their anger and although, it’s not physical abuse it is emotional. My husband became a very selfish, angry man. Words were said that hurt. Some of his actions were incomprehensible to me. I initially lashed out, arguing, attempting to push my thoughts on him. Attempting to have him admit to his insecurities. I viewed his anger and the words spoken with logic, but there is no logic to this. His words were meant to hurt and I hurt.

I came to realize, I was being hurt more by this than my grief for him. Understanding I couldn’t win, I learned to ignore what he was saying, knowing in my heart, I was just a convenient target for his anger. I had to learn to accept this, that this wasn’t about me, this was about him. I stopped engaging in verbal sparring. I subjugated my own anger, ignoring his words, presenting myself with a calm demeanor, helping him as his health deteriorated. I often went outside into the yard, frustrated, angry, and crying. His words taking a physical and mental toll on me. More and more of myself was invested in his comfort. I became emotionally battered and depressed, with no relief in sight. I knew the only way to gain relief was with his death. Could I accept that? Could I think of myself? Few speak of the relief of a loved one’s passing without tones of guilt.  It was far too late to walk away for me. I had to persevere. Knowing there would be no apologies from him, no gratitude, no closure to 41 years of marriage. I spent the last few months of his life in a haze putting one step in front of another. Dealing with and reacting to each new phase of the disease. He’s gone now and I’m sad for his loss. I am gradually learning to forgive him, for his careless words. I have discovered I have an incredible wall of strength and what I lived with made me a better person. I’m learning to laugh again and I have more good days than bad. 


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