My wife Collette died on June 18th 1987.  She was ill for some two and a half years before her death at a young 65 years.  Collette was convinced that I could care for her so I became her only caregiver despite the fact that we had three of our five children here in Victoria.

Since that time I have written extensibility about how I cared for her in my book Shared Knowledge and elsewhere.  I am quite comfortable talking about my role now at some years since Collette died.  I am not sure that I would have felt the same many years ago.

I have given much thought about how to talk about my role and have decided it best to address it under a series of heading.  

Finding out:

Collette had T. B. at the age of twelve and spent some two years in a San in Fort Quappelle in Saskatchewan.  Since that time she had had a yearly chest x-ray as part of a Nation wide survey.  Collette had come home from the survey with the news that she was advised to see her Doctor as soon as possible.

I went back up to Clinic and spoke with the Doctor who had read Collette’s x-ray.  I was shown one spot on the right lung that clearly showed signs of being a tumor.  I was advised to have Collette seen by a surgeon as soon as possible.  I remember being a bit taken aback at the insistence of the Doctor that a surgeon be involved immediately.

Telling Collette:

Being the bearer of bad news is terrible at the best of times but to have to tell ones wife that a potential tumor had been found in one lung was the hardest thing I have ever had to do. 

Collette was a person that did not like to skirt around a subject but all the same to hear this news was very hard for her.  After a thoughtful pause she quietly said, “It is my own dam fault”. Collette had been a heavy smoker for all of her adult life!

Seeing the Doctors:

Collette and I did not have the same General Practitioner and I was never invited to talk to her Doctor.  Collette was told that at times what appeared to be tumors usually turned out to be benign.  However the surgeon had no such doubts and scheduled an operation forthwith.  While painful, the operation was a success the news was not.  A fairly large tumor had been removed but the Surgeon insisted on a monthly x-ray.

Cook and housekeeper:

While I had a husband’s rudimentary abilities about doing cleaning and was a master of the vacuum cleaner cooking I was a babe in the woods when it came to cooking.     

How would you describe your experience?

Exhausting, frustrating, demanding, never ending, and in the end the most rewarding time of my life.

Exhausting because I had to do a host of things for which I had no training or experience.  Learning to cook and keep house to one’s spouse’s satisfaction is a daunting task.  I now have an appreciation of the phrase, “A woman’s work is never done”! I had no time for myself or my hobbies.  My rest periods were only when Collette rested.  Frustrating because everything was new to me. Being married to a gourmet cook was no help whatsoever.

Demanding because I wasn’t able to organize routines in a natural sequence.  I was always playing catch up.

Never ending because of the juggling of medication times, visitors and making sure Collette got her rest to say nothing of the endless phone calls.

Most rewarding:  From the very first Collette made it abundantly clear she believed that I and I along could care for her.  That of course was her gift to me and it has been a great comfort to me all these past twenty years.

Looking after myself:  I did not look after myself and I paid for it.  During the two and a half years of Collette’s illness I never once exercised.  I put on twenty pounds and eight months later had a dandy heart attack and another one three months later.  I was just plain neglectful and frankly I have no excuse.

Looking back:  I should have taken care of myself.  A caregiver that doesn’t runs the real risk of not being a caregiver for very long.  I was lucky and I know it.

Needed to know:  Hard to be clear about this.  Home care twenty years ago was not the same as todays.  We have learned a lot.  There are more trained people and thank God we have Hospices.  Frankly until I got Victoria Hospice involved I don’t think I had any useful advice from anyone.  The operation was very painful for some time. We had drugs for pain but they were not very useful.  I got the distinct impression the G.P. was afraid of drugs for serious pain control.  Nobody suggested I take care of myself.  All of our children were very helpful with visits and such.  However Collette wanted me around all the time and that was a problem for the whole family.  Looking back I needed lots of advice but until I got Hospice involved I had no one to ask.

Experience:  I am convinced that if ones suspect their loved one is seriously ill they should be involved from day one.  If my wife became ill today I would stop at nothing to get advice that I could understand.  I have little patience about one spouse’s use of the word privacy.  My wife and I understand each other perfectly on this issue.  

Learned:  It is unwise to hear about a serious illness without asking for a second or even third opinion.  The care giver must be privy to Doctors visits and phone calls, copies of specialist’s opinions and should seek information from ones pharmacist.  Look to the future.  If the illness is serious consider having your local Hospice involved.  Hospices have many trained volunteers who can give respite to ease the care givers role.  Most of all Hospices are a source of helpful information.  

My suggestions:  Never under any circumstance allow your loved one to be seen by any Doctor alone.  I want to be very clear about that.  Doctors and Nurses do their very best to give clear honest opinions to their clients.  The problem is that all too often the ill person hears things very slanted to their expectations rather than the truth of the situation.  In our case because Collette heard information her way and I mine I resorted to having one of our sons accompany us on visits with Doctors.  Get your local Hospice involved as soon as possible.  It is true that not all Doctors take kindly to the Hospice Concept and if that is so one should change Doctors forthwith.  Not all of our loved ones can be cared for and die at home, however it is an option and which I hope will be considered by all.  It is possible to have the benefit of Hospice expertise in pain control in a Hospital setting and I hope that also will be considered.

Over again:  No question and I would be better at it.  I have held three people when they died and they were and still are the most rewarding and spiritual experiences of my life.    

The Past:  It is hard to recreate the past and in my mind serves little purpose.  Hindsight is always interesting and God knows anything we have ever done could have been improved upon but we live in the here and now. 

Feeling:  I did my best, I am proud of that and I know Collette was grateful. 

Claire and I have been married for going on seventeen years.  Our loved ones are a part of our life and we talk about then often.  We are grateful for the past and we live in the present.

Every now and then I run into a newcomer in one of our Hospice Groups who adds just a little more understanding of the word “Bereavement”. We were talking about the death of his wife and after a long pause he said.  “You know it wouldn’t be so bad if I didn’t love her so much.”

We shook hands, gave each other a manly Hospice Hug and I have never seen him again.