Finally, I am dipping my toes in the water of discussion. Over the last year, I have read many of the numerous postings searching for someone in a boat similar to me. I am the caregiver for my husband of 40+ years. As many have said, I do it all, from coordinating appointments, running medical timelines to overseeing the financial and physical work of running a home. With Stage 4 Bladder Cancer, Chronic Kidney Disease, and Peripheral Vascular Disease my husband is living in what most people would call denial. I choose to refer to it as mutual pretense. Although, he is perfectly aware of his co-morbidities, he refuses to accept his illnesses. He refuses to view or discuss the various medical reports. He heard as well as I, the oncologist’s prognosis of 6 months to 2 or 3 years. He refuses to discuss the future, so we live in a pretend world.

I truly did not understand the depth of his denial until Jun 14^th. I was cleaning out a kitchen cupboard of extraneous items and went to throw out a set of old unused metal bowls. He confronted me, questioning why I was doing it. When I explained I had no use for them, he said to put them back. He proceeded to tell me that he was going to get better and be able to walk (he can only walk about 20 metres before sitting down) and he would use the bowls for cooking when his legs started working again.

I was absolutely flummoxed and didn’t know how to respond. When I put the bowls back, he said I was a negative and pessimistic person. I responded by saying actually I’m optimistic and living in reality.

With his denial so entrenched each and every day is difficult. I try to remain positive, but I continually run the gamut from deep seated anger and overwhelming sadness to enjoying the small moments in life like the sun on my face or the smell of the roses from my garden. 

It is difficult preparing for the death of a loved one, never knowing when it will happen. Listening for his breathing in the middle of the night, and feeling alone with your thoughts.

Cherel               

Hi Katherine,

Thank you for your welcome.

I have read DJ74’s thread and cannot imagine the difficulties of dealing with a partner’s denial in a relatively new relationship let alone combining it with an angry ex-wife.

I’d like to introduce myself. I am a retired “baby boomer” who resides with my husband of forty plus years in the Greater Toronto Area. Having raised three children, I embrace a strong commitment to my immediate and extended families. Living with Felty’s Rheumatoid Arthritis I am cognizant of the medical infrastructure here.

My husband who just turned 65 was a blue-collar worker who seemingly appears to be aware of his illnesses; Stage 4 Bladder cancer, Chronic Kidney Disease (less than 20% functionality), Peripheral Vascular Disease (groin stents and blockages both legs), Sleep Apnea and a 5.2 cm. Abdominal Aortic Aneurysm, but chooses not to accept them. He has given his written consent for my inclusion to the doctors and their teams and I accompany him to his various appointments with the General Practitioner, Urologist, Nephrologist, Oncologist and Radiologist. I am in essence his informal caregiver and primary organizer.

With my husband’s disease complexity and the difficulty of managing his multi-morbidity issues, the doctors’ are now in a wait and see pattern; no surgeries and no chemotherapy. As the Oncologist expressed when there is a “fire”, he would put it out.

With my husband’s depression due to the difficult emotional challenges facing a terminal illness and profound denial with me there is a major obstacle to all end-of-life care. This obstructs any ability to plan as a couple for the inevitable, as well as any opportunity for us to say goodbye to each other and to review our 47 years together.

I cannot change or override his denial; however, it places me in a difficult position. As I accompany him to his appointments, I am unable to speak clearly with his doctors; even my mentioning his depression in front of him to his doctors, angers him.

When I prepared the papers and asked the Urologist to refer us to an Oncologist in a clinic setting at a major hospital, I assumed we would be getting a team as has happened with the Nephrologist (vascular surgeon, hematologist, pharmacist, dietician, nurse). Unfortunately, this didn’t happen. We now have the Oncologist, but no team. I had hoped for a team setting including a counselor or grief therapist. Placed in a setting such as this, my husband would have railed against it, but would have eventually accepted it.

With our age and all that it entails, palliative is not a word that is used in this home. My husband believes palliative equals imminent death and with denial he is unwilling to accede that there is much more to the phrase “palliative care” than he believes.

So to answer your question, “Do you or your husband see a counsellor through the cancer agency?” no. To seek an individual counsellor for him would anger him and disturb and disrupt his entrenched denial. I on the other hand, would have to seek counselling privately via the internet without his knowledge. I have done many things associated with his care without his knowledge. As a realist, having done so with my mother before him, I have spoken via email with the funeral home and made arrangements, knowing not if or when, but that this will happen sooner rather than later.

We live a quiet life, with few friends, he sleeping much more than normal and I running the home physically and financially. Every day I plaster a smile on my face and live in his pretend world where everything is just fine.

Cherel

Dear CarolK,

Thank you for replying to my post. I’m so sorry for the loss of your husband. A memory journal is an incredibly good idea. I have done a few stories and need to do more. Writing his eulogy led me down a path of wonderful memories. I hold them close to my heart and think of them often when he says things that upset me knowing this is not who he was. I know that there are uremic toxins affecting his system from the Chronic Kidney Disease, but it is difficult to accept. To know the angry dying man, I live with and care for, is not the same man he was.

Cherel33 

Dear Cherel,

I've read your heartbreaking posts. I don't have the same story, although my husband is in hospice with chronic leukemia and central nervous system involvement. For him the reality is that he doesn't get most of what is happening. We have one daughter (my step-daughter), however, who is in sharp denial, and blames me for everything that isn't going right. So there's a bit of connection to the anger that accompanies these huge life challenges.

I do hope you are able to hold on to and remember the good parts of your life together. And, as much as you can, I hope you will reach out for the information and support you can receive as his partner and care-giver, whether he wants to participate or not. You've probably heard lots of people telling you to take care of yourself. One of the hardest things to do. But it is true.

My thoughts are with you,

Nouce

Dear Nouce,

Thank you for responding to my post.

Although I don’t know a lot about your husband’s condition, I can emphasize. The gradual loss of husband, friend, and lover erodes our sense of self; who we are and who we have been.

Denial from a loved one is a difficult concept to accept. We can understand the anger with the situation and the railing against the injustice of it, but why do we become the likely targets. Is it because they know as mothers and wives we will continue to love them and accept their pain? It hurts us and makes this devastating journey so much harder.

My three adult children are aware of and understand their father’s illness. The two oldest, girls, are still daddy’s little girls and have not reconciled that their father’s life will be coming to a close sooner rather than later. They’re not interested in hearing the minutiae of his illness and how it affects us both. My son, the youngest at 31 reads and helps me analyze the test results sharing in my grief.

I am fortunate to have my sister who supports me in the continual decision making process.

Knowing my husband’s passing will be difficult at best, I know that I have to prepare for the inevitable whether it be in six months or two years.

Last Friday, on that overcast, incredibly hot, humid day, I awoke determined to move forward with the appointments I had set in place with the minister, the funeral home and the cemetery.

It broke my heart to do it, but I deluded my husband into thinking I was having a “me” day with my sister. My sister, my friend, arrived early bringing with her a sense of strength and empowerment.

We accomplished what I had set out to do quickly shopping to give credence to the lie I had perpetuated.

Maintaining this illusion that everything is fine is so problematic. My body is reminding me of the stress it is under. I have been in remission with Felty’s Rheumatoid Arthritis for quite a few years and now I am not. Another battle to become accustomed to once again.

I greet each day attempting to be light, but know that I am cracking with the dark edging in.

I know that this is not a forever time of life and wading through these murky waters is not all of who I am. I know that with strength I will survive this devastating time and hope I am a better person for it.

Cherel33 

Dear Cherel,

Good for you! You are not lying, you are living into the truth.

I posted a picture as my profile photo that is a lantern in a Japanese garden in Montreal. It has one leg in the water and one on the land. For me that is a reminder of how we are living. Yoúr words: "I know this is not a forever time of life..." so clearly portray that same understanding.

May your day today have a clear ray of light!

Nouce

Hello Nouce,

Thank you for your kind words.

Living with my husband’s denial is effecting so many areas of our lives from financial to emotional. Through meticulous planning I’m relatively in control financially. Emotionally it is an uphill battle.

I have felt guilty for not sharing the truth with my husband, but I know I must protect myself as best I can. I must remember that it’s okay to put myself first, because if I don’t, then no one else will.

Last week’s good news of remission from the oncologist uplifted my husband’s depression. The doctor’s awareness of the denial was exemplified by the carefully worded news. The lightly asked questions of how are you feeling and any cognitive issues seemed to be clear on the surface. Only after, when I was reviewing the appointment and test results did I fully delve into what was really said. We are fortunate in that at each appointment I am handed a copy of the latest test results and a letter of his thoughts of the previous appointment to the general practitioner. My husband has not willing reviewed or heard any of the test result information.

At no point has any one of the numerous doctors spoke clearly to me. Only through body language with the nephrologist and urologist in front of my husband and my inherent need to understand and informal researching have I grasped the direness of the situation.

How are you feeling? How are you living day to day?

Cherel33

Greetings, Cherel,

I have a quarterly care plan meeting with hospice and nursing home staff. It's not enough for me, but at this stage I think it's true that no one knows what to say any more. And I end up watching the tiny little signs--blank eyes, swollen ankles, confusion (is it 3:30 in the morning?). And wondering.

But it is summer, and the flowers are blooming wildly. And I am going for two days to spend my birthday with a friend.

Guilt is always with us, but I am trying to learn to hold it lightly. May you find some freedom there too.

Nouce