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

Cherel33

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.

Cherel33 

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 66^th 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. 

Cherel33 

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.

Cherel33 

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. 

Cherel