I was sitting with Don in the nursing home this morning, and he told me he is feeling depressed today.  “Any particular reason?” I asked.  “Or just feeling low.”  He nodded, said he just felt a bit down. 

So we watched a bit of TV, and we went through the morning’s mail, and then he suddenly said, “Do you know, I don’t think I’m ever going to get out of here.  I think I’m going to be in this place until I die.”

I didn’t know what to say.  So I looked at him and said, “Not necessarily.”  I couldn’t say any more with sincerity.  So I added, “But, it’s OK for the present, isn’t it?  Just spending time here together, and coming home a couple of times a week to spend the day?”

“Oh yes”, he agreed.  “It’s all right for now.”

Don’t look ahead.

Sometimes I think the multiple sclerosis is causing Don a complete personality change.  Perhaps it’s the depression which seems to permeate all day, every day, with feelings of despondency and an untypical lack of interest in life, church news and current affairs.  Perhaps it’s the lingering effects of the methylprednisolone treatment which caused such huge and volatile mood swings.  Perhaps it’s the MS itself, that causes confusion and fogginess in the brain and means he often can’t follow conversations where previously he would have relished the repartee, or get the point in jokes where previously he would have been the one to make the witticism.

So it was vastly encouraging when Don was made the target at a little exercise they did at church the week before we moved from Muswellbrook.  The only church he can get into with wheelchair access at Muswellbrook, is a sort of of ecumenical informal family service at the Anglican church on Sunday evenings.  A couple of people were secretly selected by the minister, and for each one, the three defining characteristics of that person were read out.  Everyone had to guess who the person was.  (…. This of course led naturally to the defining characteristics of Jesus, and of his followers.)

The minister read out:  “Who is the person defined by these three adjectives:  interesting, compassionate, humorous.”  A brief pause, then a chorus of several people saying at once, “That’s Don Dufty.”

Interesting?  Yes, the most widely-read person I have ever known, prides himself that whoever he meets, he can immediately find a point of contact with that person and talk about their area of interest.  But nowadays he can’t read (bad eyes) and often loses the point of an article when I am reading it to him (the MS).

Compassionate?  Yes, in fact his whole ministry was grounded in compassion, and he has often found himself on the outer — yes, even in the church!  — because of his championing of the underdog.  But nowadays the debilitating condition means we are both wrapped up in our own problems and not so aware of others.

Humorous?  Definitely — that dry humour and the quirky unexpected remarks were part of an inimitable style.  But nowadays the sharp wit has gone and it can be hard for him to follow even the most obvious humour.

And yet, for people who have only known him over the past few years, he was instantly recognisable by those three adjectives.

Very reassuring, that little exercise.  What it meant to me was, that all the difficulties and changes brought about by the multiple sclerosis are nothing but an overlay, and he is still the same person underneath it all.  That the defining characteristics are still recognisable.  That there is an unchanging core at the heart of a person.  That the qualities that made Don be Don, do still define him even when buried and hidden by the changes made by this insidious disease.

A good belly laugh is a tonic, and can even lift the depression that hits MS sufferers.  I used to think, Well, of course anyone with multiple sclerosis would be depressed, who wouldn’t be depressed with that slow insidious disability taking over your body?  But since then, I have learned that it is actually part of the condition — again, nobody knows why, like so much in MS — and depression is invariably much worse in people with multiple sclerosis than in people with equivalent but different debilitating conditions.  So it really is a part of the condition, not a result of the condition.

There is actually a joke site specially for multiple sclerosis!  http://www.shof.msrcsites.co.uk/index.html

And friends send me emails in the hope that I will read them to Don and give him the tonic of the belly laugh that I mentioned.  Here is the latest I received — yes, I had heard most of them before, but I still laughed out loud, and so did Don.

These are from a book called ‘Disorder in the American Courts’ and are things that people actually said in court, word for word, taken down and now published by court reporters who had the torment of staying calm while these experiences were actually taking place.
Attorney:  What gear were you in at the moment of the impact?
Witness:  Gucci Sweats and Reeboks.
Attorney:  This Myasthenia gravis, does it affect your memory?
Witness:  Yes.
Attorney:  And in what ways does it affect your memory?
Witness:  I forget.
Attorney:  You forget?  Can you give us an example of something you forgot?
Attorney:  What was the first thing your husband said to you that morning?
Witness:  He said, “Where am I Cathy?”
Attorney:  And why did that upset you?
Witness:  My name is Susan!
Attorney:  Your youngest son, the twenty-one-year-old.  How old is he?
Witness:  Uh. He’s twenty-one.
Attorney:  Were you present when your picture was taken?
Witness:  You’re kidding me, right?
Attorney:  She had three children, Is that correct?
Witness:  Yes.
Attorney:  How many were boys?
Witness:  None
Attorney:  Were there any girls?
Witness:  Are you serious?  Your honor, I think I need a different attorney.  Can I get a new attorney?
Attorney:  How was you first marriage terminated?
Witness:  By death.
Attorney:  By whose death was it terminated?
Witness:  Now whose death do you suppose terminated it?
Attorney:  Can you describe the individual?
Witness:  He was about medium height and had a beard.
Attorney:  Was this male of female?
Witness:  Guess.
Attorney:  Are you qualified to give a urine sample?
Witness:  Huh…Are you qualified to ask that question?
Attorney:  All your responses MUST be oral, OK?  What school did you go to?
Witness:  Oral.
Attorney:  Do you recall the time you examined the body?
Witness:  The autopsy started around 8.30am.
Attorney:  And Mr. Denton was dead at the time?
Witness:  No. He was sitting on the table wondering why I was doing an autopsy on him.
Attorney:  Now doctor, isn’t it true that when a person dies in his sleep, he doesn’t know anything about it until the next morning?
Witness:  Did you actually pass the bar exam?
….And the best for last
Attorney:  Doctor, before you performed the autopsy, did you check the pulse?
Witness:  No.
Attorney:  Did you check for blood pressure.
Witness:  No.
Attorney:  Did you check for breathing?
Witness.  No.
Attorney:  So then, is it possible that the patient was alive when you began the autopsy?
Witness   No.
Attorney:  How can you be sure, Doctor? 
Witness:  Because his brain was sitting on my desk in a bottle.
Attorney:  I see, but could the patient have still be alive, nevertheless?
Witness:  Yes, it is possible that he could have been alive and practising law!

Dogs were never allowed inside our home.  Dan, the loving faithful Labrador who was part of our family for 13 years, who came on camping trips with us and who shared the childhood of our three sons, was nevertheless barred from crossing the threshhold.  Don having grown up on the farm, was adamant that the place for dogs was outside.  We all learned to disapprove of people who let their dogs roam at will through the house.

But here we are, years later, with Jebby — and how different things are.  Don decided sensibly that since he had MS and our travelling days were probably coming to an end, we should get another dog.  For company, for taking on walks, and just because he likes dogs.  We ended up with a little dog from the pound, a border collie Irish terrier cross.  I’ll have another attempt at a photo.

These days I am of course the one feeding Jebby, taking her on walks, looking after her shots.  And yet, she indubitably belongs to Don.  From that first moment of driving away from the pound and she gazed at Don with her eyes saying silently, soulfully, “You rescued me!”, she was Don’s dog.  Feels his moods.  Sits at his feet moodily when he is depressed.  Climbs onto his lap when he is really depressed, upon which he will often cheer up and decide we should go out onto the verandah in the sun.  Because this is a dog that has the run of the house, and although we sometimes glimpse in the eyes of visitors the sort of disapproval we used to feel ourselves, we couldn’t care less.  It’s our house, our dog, and we are trying to make life with MS as contented and enjoyable as we can.

There is a sense of urgency about finding another place to live (yes, the stairs!) and we have our names down for self-care units in various retirement complexes (mostly run by the Uniting Church, not only because of our own association with the church but because they have such a high reputation in aged care).  Twice we have been offered a unit, inspected it and were planning to take it- when we learned in each case there was a strict no pets policy.  Regretfully we turned down the offer.  Don has few things left to him; no longer able to read or drive or go for walks, he finds his little dog is a ray of sunshine in the day.

I think it is a wrong policy, and not just about Jebby. All the evidence shows strongly that as you get older or disabled, having a pet decreases depression and gives longer life, fewer health complications, greater wellbeing and happiness.  http://www.petsfortheelderly.org/articles.htm

Luckily, I believe the “no pets” policy, in Uniting Church complexes at least, may be changing.