Multiple Sclerosis Carer

I’ve done quite a few different jobs in my life and haven’t minded any of them really.  My various stints at waitressing, housemaid, filing clerk and so on, might not have been all that challenging but there were things about each one of them that I enjoyed.

But I have just taken on a job that I will NEVER do again, not even if they pay me $100 an hour. It is unbearable.  I am a supervisor for the Higher School Certificate, and trust me, there is no more deadly boring job in the world. A friend asked me some time ago, saying he needed to find 17 people as supervisors and he only had 8.  I wasn’t looking for a job but I said, well if he put me on for just a half day, so I could spend the other half with Don as usual, and only for the days he was really stuck.  So I am on 7 exams.

Of course the HSC is hugely important in Australia.  Your HSC marks determine which university course you get into – for medicine, law, physiotherapy, dentristy, you need impossibly high scores, but even for the less sought-after courses there is a cut-off point according to your HSC totals.  So the supervision has to be very strict.

Here’s what you do as a supervisor: NOTHING. You stand, and you watch the students.  For THREE hours. You are specifically told that you cannot read, cannot knit, cannot have headphones, cannot do any sort of puzzle or other activity, cannot sit.  You cannot wander about (might distract them). So you stand and watch the students, and every 20 minutes the other supervisor will move from this corner to that corner, and so you move from your corner to the other corner. And then you stand and watch.

I berate myself that I should have more mental resources than this, that I should be able to keep my mind occupied with some sort of creativity during the long silent hours, but apparently I need other stimulation.  A weakness I guess, but there you are.

I’ve done two sessions and there are five to go.  So I’ll do them, but never again.  It is agony!

Then I got the guilts about poor Don sitting in a nursing home all day, how boring could that be?!  So I asked him if he gets very bored, and was relieved when he looked surprised and said, “No I don’t get bored. Probably I just go to sleep when I’m bored but I get very tired so that isn’t a bad thing.”

Don was always a poor sleeper, and would be up at all hours of the night.  In the early hours of 12 September (this is Australia, remember), maybe two o’clock in the morning, he suddenly shouted out to me, “Barb!  Come here!”  I got out of bed and rushed into the living room where he was watching TV, and he just wordlessly pointed to the screen.  I watched for a few minutes puzzled.  Obviously it was a movie.  He looked at me and said, “That’s happening in America.  Right now.  It’s happening.”  I sat and watched with him, and we watched that plane plough into the building, over and over and over again.  And still couldn’t believe it, no matter how often we saw it.  I had to go to Sydney the next day, and again we were glued to the TV with the people we were visiting.  It just seemed as though we had to watch that terrible thing endlessly, trying to comprehend.

It made people talk to each other in unexpected places.  My friend got onto a bus in the morning to go to work, having just heard the news, and blurted out, “Planes have crashed into New York!” and suddenly the whole bus was buzzing with talk, people explaining to other people who hadn’t heard the news yet.

Thinking back over some of the things that have happened in the ten years since, in the world and in our personal life, I think it’s a good thing we couldn’t see the future.  So many terrible things have happened.  But good things happened too, and if we knew about the bad stuff, I always think we would focus exclusively on that.  We would miss out on the joy and the things we should treasure.

It’s been one heck of a decade.

I was talking with Molly in the activities room.  She said, I’m going to bring up at the next meeting about the lack of privacy.

I was surprised.  Oh? I thought they are terribly careful about privacy? 

She said, Not about baths and personal hygiene, and changing the continence pad.  I mean about our relationship.

Molly explained that she had arrived to see Les as usual, but later than usual, and he had been quite irate that she had been later than he had exected.  Why are you so late? he demanded.  Why didn’t you let me know?   Where have you been?  And started on giving her the rounds of the kitchen, telling her in no uncertain terms how long he had been waiting for her to arrive.

Staff member Diana then rushed in and said, You mustn’t speak to your wife like that!  She comes to see you every day, don’t speak to her like that!  Be quiet, Les, you have no right to talk like that! …  and reprimanded him severely on behalf of Molly.

Molly answered with some heat, He can speak to me how he likes, it’s nobody’s business!  and the nurse was very taken aback and started to argue that Les’s conduct had been “inappropriate”.

We always argued about time, Molly said to me, he was always so punctual and I would be racing to be ready in time.  If we were home, he would be ranting about me being late, and I would either snap back, or maybe I would be apologetic.  But either way, it would be nobody’s business except us.  Now he’s in here and everybody is telling him how he should be talking to me.  Well all I can think is, how would they like somebody to be in their own home and tell them, or their partner, how they should be talking.   It’s nobody else’s business, she said, and I wish they would leave us alone to be nice to each other, or snap at each other, or have a relationship with each other, as we used to have.  Before he came into this fish bowl.

I was a census collector for the nursing home.

I did apply to be a regular collector, same as I have done for the past two censuses, in 2001 and 2006, walking miles and meeting people at their doors, coming back the next week to pick up the forms.  I remembered it as quite enjoyable and got me out and walking, which I like.  But at the training day I remembered what a big workload it was, and wondered why I had taken it on again, when I met a “reserve” who was breaking her neck to actually do the job, so we swapped and I went on standby instead.  But I agreed to do the nursing home because they couldn’t find anybody else.

I thought it would work out well, that I could visit Don and then slip away at intervals to the various wards to distribute the forms, do the paperwork in his room, spend a lot of time with him and still get the job done.  It did sort of work out that way, and it all went quite smoothly.

And I got paid about $350 for the 120 residents that we had.

But it was definitely a lot of work!  Because basically nobody in a nursing home, by definition, can fill out the form themselves, with a few notable exceptions.  They have shaky hands and can’t write, or they can’t see, or their memory has gone and they can’t remember.  So I pinned up the census form in a very obvious place in everybody’s room, and had a notice put on the sign-on book, asking visitors to help their person to fill out the form and hand it in to the desk.  I was told that about 50% of the residents get visitors in any given week, which frankly I thought is pretty good.  I don’t think it turned out to be that much, but the visitors did respond well.

Otherwise it was an “interview”, where I sat with the person and asked if they remember when their birthday is, and how many children they have had, and whether they finished High School or primary school, and were their mother and father born in Australia or where?, and how long they have been here in the nursing home, and so forth. 

 Interestingly, the least reliable answer was to how long they have been there.  (Obviously the census wants to know how mobile we are as a society, so they ask what was our address one year ago, and five years ago.)  I quickly learned to ignore most people’s answer to that question, and get it from the records, which I was allowed access to for the occasion.  People who could tell me clearly that they had finished High School and went on to do midwifery, or did a carpentry certificate and worked all over NSW, or reminisced about their children and who they were and what they were all doing (none of which is relevant to the census but they did want to talk) — would then get vague and say, Oh I only came in last week; or else, I think I’ve been here a fortnight at the most; or else, I’m only here for a week and then I’m going home.   And I would check it out with staff or the records, and they have been there for years and years.

Denial.  How could we survive without it?

Don came home today, but getting him into the car at the nursing home was almost a disaster, and I nearly had him on the ground.  Somehow he had slid too far down into the wheelchair, and when I tried to hook him up to the sling to get him into the car, he slid down further.  The wheelchair started to slide backwards out from under him (had the brake on but it doesn’t hold very well at the best of times) and I really needed a third person to grab the wheelchair and push it firmly under his bottom.  Without that extra person, the wheelchair rolled away out of reach, and so I had to take his full weight and somehow manhandle him into the passenger seat.  I nearly couldn’t do it, almost dropped him onto the ground in the process.  It nearly killed me, and once he was in, I said “I’m just going back into your room to pick up your glasses” but in reality I wanted to go away and sit down to recover from the shakes and the trauma of such a near-diaster.

I don’t think I can get him home on my own any more.

On the other hand, once we got home there was no problem getting him out of the car and into the wheelchair, and the return journey went smoothly too.

Interestingly, Don doesn’t seem to be so keen on coming home any more, and in fact the last couple of times I arranged for him to come out for the day, he’s said that he didn’t want to come — too tired, or not feeling well enough, or let’s do it another time.

We have visitors coming on Sunday, so of course that will be an outing, and I guess I will in fact keep doing the visits home for a while longer yet, but I know that the days of the Milford Person Lifter are numbered.

We had to fill out a Resident Satisfaction Survey for the nursing home.  I did the bits about date of admission, how did we find out about the place, reason for using residential care, and so on.  Then I asked Don for his ratings on things that affect him on a daily basis — respect by staff (mostly OK but there are a few whose attitude he doesn’t like), cleanliness and laundry (no problem), meals (variable, mostly pretty good but cordial every dinner time is a bit much to take!), general comfort.

Then I came to the last question: “As a result of moving into residential aged care, which of the following things do you miss MOST?  (Tick all boxes which apply):  (a) Having more choice about times to eat, shower, etc  (b) Spending time in the garden  (c) Going on outings  (d) More regular contact with people / sharing thoughts  (e) Having plenty of things to occupy your day  (f) Cooking your own meals / eating favourite foods  (g) Companionship, being with friends / family  (h) Pets  (i) Other (Please specify)”

I read out the eight options to Don but there was nothing he latched onto straight away, so then said I’d read them out again slowly so he could think about them.  At the end, he had no opinion, so I tried to help. I said, “Well you used to love the garden but that isn’t really an issue any more, is it.  And I know that choosing when to eat and everything, doesn’t matter to you.  So, do you think what you miss most would be, the companionship one?  Being with family and friends?”  Oh no, he said vaguely, You come here, and people can come here if they want to see me.  “”So, what about the boredom factor, having plenty of things to occupy your day,” I suggested, “and having more regular contact with people and being able to share your thoughts.”

Don thought about it for a bit, then he said, “No, not really.  I don’t miss any of that.  I’m quite content.”

“Lost in Transit: The Strange Story of the Philip K Dick Android” written by our son David was released early in July, and the official launch was held last weekend. David very caringly chose to have the launch locally so that his father could attend, rather than in Canberra where he lives — a four-hour drive away, and impossible for Don to get to.

It was a marvellous occasion, with wine and cheese being offered in abundance, a crowd of people, lots of books were sold, and David’s talk was entertaining and inspiring.

I have to say, though, that it was very difficult for Don. More difficult than I had expected. A friend pointed out that his life has become so limited, so circumscribed, so routine, that it must have been overwhelming to be surrounded by noise, by people, by dozens of conversations going on around him all at once, and just the high level of excitement and anticipation, all must have been hard to cope with. He seemed anxious and stressed for much of the time, and was very tired by the time it finished and wanted to go home immediately.

But in spite of all this, he was clearly bursting with pride, and when he got back to the nursing home he regaled everybody at length on what a great event the book launch had been. I can only begin to imagine the disappointment if the event had been held in Canberra and I had made the journey without him, leaving him yet again to just hear reports of yet another marvellous occasion that he couldn’t get to.

Don at the bookshop

”

"It's an amazing story and I knew I had to write it down..."

It is terribly frustrating to walk into the nursing home and find Don just lying there with the TV off, or else blaring away in Arabic or Spanish with the news on SBS (multicultural channel).  “What are you watching this for?” I will demand, and he just says, “Can’t reach the controls”.  So I look around to search for the remote control and eventually track it down on the locker over at the side, or across on the little bookshelf I bought him, or on the shelf above.  I ask myself who is the genius who didn’t notice that this man is completely immobilised and can’t reach anything beyond the tray in front of him.

Or, last weekend I drove to Canberra to pick up my grandson and bring him back for the holidays, and for the time I was away I promised Don faithfully that I would phone to say I had arrived safely, and also let him know when I was setting out to come back.  Imagine my frustration when I phoned time after time, and it just rang out with no answer.   I realised of course that the phone had been put out of reach.  Solution:  Phone at the time I know the tea lady will be coming, or at lunch time, and keep phoning every couple of minutes until somebody comes in and answers it for him.  When they answer and say cheerfully, Don Dufty’s phone, I don’t ask to speak to Don straight away, but ask as indignantly as I can where they got the phone from, and then ask that they make sure it’s within reach after he finishes the call.

Other item to be often put out of reach is the reading glasses.  Now, I know Don’s eyes are pretty bad and he doesn’t read easily (glaucoma) but he can read some things, and he certainly needs his glasses to see what’s on TV’.

I did make up a sign to put near his bed saying “Please make sure Don’s GLASSES, PHONE, AND TV REMOTE are always kept on the tray in front of him, so that he can reach them”.  Except that I had more exclamation marks and underlinings than that, and I think it was a bit confrontational.  It didn’t make a lot of difference.  Not that these things are always  out of reach, it doesn’t happen all the time.  But regularly enough to become a source of great frustration and annoyance.

“Lost in Transit” by David Dufty (our son!)  is being published by Melbourne University Press and has just been released.  David has taken this week off work and has been interviewed by various newspapers and radio stations – Canberra Times, ABC radio, a Queensland station – tomorrow another interview and later in the week he is being interviewed by 702 Drive Show which I am very excited about because I listen to it regularly and it only gets guests onto the show that they think are particularly interesting.

David wrote the book over a couple of years at nights – after work and after dinner and after his young son had been put to bed, every night, tired or not.  Then he wrote another draft, and then wrote another draft, then did yet another re-write, until he thought he had it right.  It was a long hard slog but the story of “Lost in Transit”  is one that really intrigued him and he knew it deserved a wider audience.

The actual launch is in Newcastle in a few weeks (3 pm on 23 July at McLeans Bookshop in Hamilton if you really want to know and want to go!!) and so we are delighted that Don and I can both go to it.  His agent has apparently also sold the rights in America and it looks like Italy as well, although they won’t be published and launched until next year.

It’s more than exciting, it’s quite overwhelming.  Not to mention thrilling.

It was bucketing down, as it had been for the entire week, so I decided to be self-indulgent and not go anywhere.  Freezing cold outside as well as wet, and since it was my birthday I didn’t feel at all decadent just staying at home in my dressing gown and slippers until about 11 am.  Then of course I did get dressed and go out, but only to the nursing home, and Don and I sat together in his room watching the rain pelting down out the window, and watching the TV.

I had arranged with a friend who had a birthday in the same week that we would go out for dinner that night, but I phoned her and said, Can we leave the dinner for another time because I just want to go home and stay dry and not go out again, the last thing I want is to get in the car and drive all the way to the Glendale Lone Star restaurant.  And she said OK.

So at 3.30 pm I went home, dashed through the rain into my house, got into my track suit, and watched some TV programmes that I had recorded but never seen, did some piano practice, and generally vegged out for the evening.

When I was with Don I said to him very casually, Oh it’s my birthday today – casually because I didn’t want him to feel guilty that he hadn’t got me anything, or done anything special for the birthday, and also because I am not five years old and so it’s not all that important any more.  He was OK about it, and we opened a couple of happy birthday cards I had received and that was the end of that.  Except that the next day when I arrived at the nursing home, the sister-in-charge brought in a bunch of balloons and a card, with apologies that they had not  been there for me on the actual date, and that Don had wanted to do something fr me on the birthday.

Unnecessary, but very touching.

So when people ask me anxiously if I had a good birthday and what did I do on my birthday, please don’t feel sorry for me when I say vaguely, “Yes I had a good birthday, and no I didn’t do anything much” – it’s quite true.

Stayed dry, watched the rain, quite content.