JULY 26, 2006

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No family history is complete without speaking about death and dying.  
This normal phenomena visited my life in a very dramatic way in 2006.   

My wife Jeanette Louise Schuh Garneau 
died July 26, 2006 after suffering over 40 years with MS (Multiple Sclerosis). 

Multiple Sclerosis (MS) is a disease of the central nervous system identifiably by  progressive symptoms, and pathologically by scattered areas of inflammation and demyelination affecting the brain, spinal cord and optic nerves.
More recently it is considered caused by blockage in the brain.  However we need to keep in mind there are 7 types of MS.

I spent considerable time and energy researching MS (Multiple Sclerosis) to improve my knowledge about the disease and to learn of any advances in our ability to slow down the process.  In 1996 I did a projection of the progressive symptoms and concluded stage #10 death due to M.S. resulting from respiratory paralysis would most likely occur in the year 2006.  Now don't get all upset, there are many differing types of MS with differing progressive rates and most MS folks DO NOT DIE FROM MS.  Pneumonia or heart attack is the usual killers of MS patients.  The most optimistic projection was plus 2 years.

We were fortunate on three counts:

        #1 We knew Jeanette was going to die and about when, so we could prepare to leave no unfinished business.
        #2 We knew what was going to kill her.  As Jeanette said it could be worse like AIDS or CANCER.
        #3 Jeanette suffered no pain and never once complained about her condition or prognosis.

A remarkable woman to be sure, but that is another section called 'life and living', what I want to record is 'death and dying', while it is still clear in my mind.  One very important aspect of Death & Dying is that the person in the dying process wants to talk about it.  Family members or friends who do not talk about Death & Dying usually have a harder time coping with death when it occurs.  

We did the usual legal things such as updating the 'last will and testimony', an 'enduring power of attorney' and a 'living will' to ensure her desires are followed out.   As an example if you desire to have no extraordinary means applied near the end time you must have a 'living will'.  Not many folks want to spend their final days, or months in a coma with artificial support systems.  But if you do, then put it in your living will.  We talked about the little things, that have sentimental value, to ensure her desires are carried out.  As much as possible give these little things to others while you are alive.

We set a top priority to travel in a motor home with handicap equipment as long as possible.  I early retired at age 54 so we could achieve our goal.  We spent ten years going 20,000 miles per year.  The last three years became impossible to travel.

Now comes the hard part, Jeanette knew that I would have a hard time, shortly after her death, so unbeknown to me, she approached Brenda Festa to come and help me with my gardening.  Jeanette had a six sense about people.  I didn't require any help with gardening, as that was one of my hobbies, to employ my time, as Jeanette declined in health.   I didn't pay much attention to Brenda as she visited Jeanette each week for a year or so, as I took the time to shop or work on my web site.  I assumed Jeanette was cultivating another friend for her own desires.  Mary Dik Ping Shu had been coming over every Sunday for ten years.  Other female friends visited her on a regular bases but these two women would have a profound role to play in my life during the death and dying phase.

Mary had became like a part of our family and was included in most family activities.  Many Sundays we would shop for Chinese food and she would prepare a meal, including hot pot.  Then we would settle down to watch movies, science fiction shows or play games.

Brenda became a new friend in the making with Jeanette's encouragement.  I was told to give Brenda and Mary hugs when they arrived and when they departed, as well as her other girl friends.  Up to this point I wasn't a great hugger.  Brenda however taught me the importance of hugging friends, but more important, is to anticipate and savor hugs, before and after the fact.  She always said, I look forward to a hug from you, or I have been thinking about this hug for a long time.  Can you imagine what this does for your ego!  As a result I changed, and began  to tell other friends, that I looked forward to hugs with them.  I began to look at other lost opportunities to boost the ego's of others.  I encountered a woman who was about 8-9 months pregnant, so I said you look great.  She beamed and said thank you, I feel great.  The changed look on her face told me she went from not feeling great, to feeling great.  I guess Jeanette knew this hugging ritual was like a bonding ritual.  This sort of sets the stage for the final chapter, death.

It's noteworthy that some cultures consider a public hug a symbol of obscenity.  These cultures are usually based on a religious background of hate, ignorance or mistrust.  Our religion is Christian and is based on love.   I am not sure what causes a relationship to go from a platonic state to a sexual state, when people are not free to marry.  Maybe it's a loss of love, because to love is to want the best for another person..  

Jeanette wanted to die at home but we decided the last 3-4 days should be spent in hospital.  The palliative care unit was excellent and family and friends had a chance for final farewells.  One daughter who didn't talk about death and dying had a very hard time when death finally visited as predicted, respiratory paralysis.  I didn't have time to grieve, as I tried to console our daughter and attend to friends.

The funeral arrangements were basically managed by other family members and it was a beautiful process but very expensive.  Jeanette and I had agreed to keep the funeral simple but some of the children wanted more, so we modified our plans.  I think it is important to consider the children's desires and cost was not a concern.  You are basically numb and only partially aware of reality.  We however were well prepared financially and clear in what Jeanette wanted.  As a husband this is what I call a fog period, or surreal time.  It is only after this surreal period that the reality of the situation sets in.  Loneliness, - emptiness, - depression.  A time to cry and mourn the loss.  But also to remember the good times.  In retrospect I can honestly say I wouldn't change a thing.

One of the hardest tasks is the disposal of personal items such as cloths, cosmetics, etc.  Janette had required 24 hr per day 7 days a week homecare for the final years, she couldn't move, so more than one caregiver was employed during this period. Again we were very fortunate to have Ehete Yerga who was our primary caregiver for 5 years.  We considered her part of the family.  She was very aware of Jeanettes desires.  She and her sister did this task which I could not have done, and wouldn't ask the children to do..

The circle of family and friends became vitally important for me.  We have two daughters living in Calgary, so I booked individual lunch appointments each week.  I found it best to deal with one on one encounters during this period.  Brenda Festa also booked lunch each week for as long as is required, so she said.  Others invited me over to their homes but that was harder and I usually didn't talk much.  Brenda Festa however was my main rock, during this process.  We could talk about anything and did.  I summarized my appreciation for what Brenda had given to me, with the following statement:   

"If you were single and I was 20 years younger, I would marry you at a drop of a hat."

Brenda being Brenda said the same thing back to me.  I couldn't think of anything else to say that encompassed my appreciation.  I learned that it is possible to have a deep platonic love relationship, for which I am eternally grateful.  About a month after the death I ended up in the hospital.  I thought I was well prepared for death and dying, and I was, intellectually, but not emotionally, so I likely just got run down.  My circle of family and friends were again there to see me through.

It should be noted that I have a strong need to be married.  I don't do well alone.  I need someone to look after.  I had wished I could be like some folks and remain single.  Being secure in my circle of family and friends, my mind turned to the future.  I dreaded the thought of dating and courting but started the process of establishing the criteria for a future spouse.  Jeanette and I had discussed this possibility and she understood my temperament.  She however said she likely would remain single if I died first.  But she always said, you can't died first as she needs me to look after her, and she had asked God to take her first, so I had no choice. 

Mary was one of the female circle of friends who I took out to lunch.  I remember trucking through a foot of snow to take her to a restaurant on Princes Island, Calgary, about a two or three block walk from the car.  I was not fully recovered from my hospital session and I couldn't keep up, as Mary walked five or six paces in front, breaking trail through the snow.   In fact I didn't think I would make it.  I told her she made me feel like the females in some cultures who must walk 4-5 paces behind the husband.  The thoughts of any possible romantic encounter was as far from my mind as is humanely possible.  

A few weeks later, out of the blue, my platonic friend Mary Dik Ping Shu became the logical ideal choice for a future partner.  We have known each other for over 10 years, she was considered as part of the family and everyone loved her.  The only down side was the fact that she had never married, was highly independent and self sufficient.  I on the other hand loved a challenge and knew what I would be getting into.  I was truly amazed how a great platonic friendship can turn into a romantic relationship, like a flip of a light switch.  To this day I don't know what caused the flip of the light switch but I knew it was the end of the Death and Dying phase of my life.  I guess it might have been God giving me a cuff on the side of the head, saying smarten up.  The beauty of this new relationship is we can comfortably talk about my past life with Jeanette because Mary was a big part of it.        

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