Multiple Sclerosis Carer

I haven’t posted a blog for more than six weeks.

Not sure how committed I am to this blog any more.  I often have a comment, an anecdote, some musings, that I think I will put into a blog, but then wonder if it is too personal and too public.  This isn’t just my story, it is primarily Don’s story, and our relationship.  Have I the right to make so much of our lives so public?  I am increasingly uncomfortable with it.

Also I think Don is starting to deteriorate, and if that’s the case then it doesn’t seem fair for me to be documenting the sad details for all and sundry.

Hopefully that is not the case and we are just going through the normal ups and downs.

Don tells me he wants to go to Sydney to see the Picasso Exhibition that is currently on.  My first thought was, Well of course that is impossible.  But then I wondered if it might actually be do-able.  After all, what’s the difference between getting him into the car to come home or out to lunch somewhere, or to the Sydney Art Gallery.  The only difference would be sitting in the car for an hour and half instead of maybe 20 minutes. I realised that I felt as daunted by the idea of driving through the Sydney traffic on my own as taking Don for the trip.

And we’ve always gone to art galleries, it’s one of the things we’ve always enjoyed together and used to do a lot.

But it is still a long way for him to sit in the car, and if things didn’t go smoothly at the other end, well we are a long way from home, and help.  So I’ve decided to take him to the local art gallery here at Lake Macquarie, and do a dry run.  They are showing the Archibald Prize exhibition at present (not the whole thing, but the selected works that they send on tour to the regional galleries), which I would very much like to see, and when I told Don about it he is keen to go too.  It’s about 20 minutes in the car.

So on Saturday we are going to the art gallery, and then lunch in the gallery cafe which looks out over the Lake, and I think it will be a really nice outing.  And I am hoping that will do us for the time being.  I’ve been told that he queues for the Picasso exhibition are miles long and you have to buy tickets in advance, so I am not really  enthusiastic.

I often read the blog of a caregiver who not only visits his wife every day, but also goes back to “tuck her in” about four or five times a week.  I thought how nice that must be, and how much it normalises the relationship, much more so than just doing the day visits.

But I also recognised that I am not so selfless.  When I leave to come home each day, I just want to get inside my home and not go out again, and a return to the nursing home is something I just do not want to do.  So I did a bit of the guilt trip thing but decided that I can only do what I can do.

But last Saturday I decided that I would go back, after all.  There is a TV programme Don enjoys at 7.30 pm on Saturday evenings, “Doc Martin”, and he had never watched them except when he came home for the day and watched an episode that I had taped.  It seems he would either forget, or else not get the right channel.  So I thought, I will go back and sit with him, and we will watch it together, and won’t that be cosy.

I didn’t wait till the deathknock of 7.30 to get there – thought it would be a bit rude to just arrive, watch the show, and then leave – so I arrived about 6.30, to find him sound asleep.  I woke him up to tell him I was there (people are very polite and don’t wake him up when they come to visit, but he sleeps quite a lot and prefers to be woken if there are visitors) and tried to keep him awake until 7.30, without much success.  He would wake up and mumble a few comments in a dreamlike state, but when I said, Would you like me to leave now?  he mumbled, No, let’s watch Doc Martin together, I want to see Doc Martin for once.  And then shut his eyes.

By 7.30 when the show started he was completely, unquestionably, sound asleep.  I bent down close to his ear and said I was going, but it didn’t even register.

I’m very glad I tried, though.  I now just do as much as I think I can do, without the guilt of thinking perhaps I should be doing more.

We’ve known Taffy for years, so when the invitation came for his 90th birthday party at the nearby retirement village, we were keen to attend.  He was widowed two years ago, and before she died his wife was in the nursing home just a few doors away from Don.  It was a good afternoon and we saw lots of old friends from way back.

But the idea of turning 90 gave me pause.  That’s  more that 20 years away, and it raises many silent questions.  Will I still be going to the nursing home every day for the next 20 years?  Or will I be in one myself, maybe in the room next to Don?  Or, like Taffy, will only one of us be there by then?  It all makes me shudder.  And I think, for the millionth time, how glad I am that we can’t know the future.

Of course, it’s very likely that there will be a complete cure for MS long before then.  Now, that IS something to look forward to.

Taffy's Party

Having complained about how deadly boring the job of exam supervisor is, I have to say that it hasn’t been quite that bad on subsequent days.

Last week I supervised Ancient History, and spent a lot of time looking through the paper trying to remember the Ancient History I did at university.  It was so many years ago that it really has become ancient history to me.  But I remembereed some of it, and also spent time daydreaming about our trip, a few years ago, to Ephesus, and Troy, and Athens, and Delphi, and Rhodes and Crete — all places where those ancient events took place, and having now some sense of place and context, I decided I would go to the library and read up afresh on some of this stuff.  (Note to self: have not yet gone to library!)

I also spent a considerable amount of time mentally composing a rather difficult and sensitive letter I had to write for a committee of which I am secretary.

But the following exam I supervised was all go! Again, I was interested in the paper, Legal Studies.  It was only a small class of 15 students so I was the only supervisor.  For 16 or more you have to have at least two supervisors.

Shortly after they came in, I was overjoyed to realise that two of them had head colds.  This meant that they frequently asked for a tissue.  It also meant that I could at regular intervals approach them at their desks, and offer them tissues, and I was gratified each time to see that they took two, three, four, and then a couple more just in case, and gave me a grateful smile.  As well as this, I would notice when there was a pile of used tissues on the desk, and smartly approach them with the waste bin so they could dispose of them properly. I tell you, I was busy!

The icing on the cake for that morning, however, was that three students at various times asked to go to the toilet.  The procedure is that I would poke my head into the adjoining room for the superintendent to come in while I left the room.  Then I would note the student’s ID number on an incident sheet, get the key to the toilet, and we would head off – out of the room, down the stairs, across the quadrangle, to the disabled toilet.  This has earlier been checked to make sure there are no notes or books inside, and has been locked ever since.  I wait for the student and then we walk back together.  I note the time on the incident sheet, and all is back to normal.

Of course, we can’t ask the students anything about the paper during these little interludes, but I do say to them on the way back, “How’s it going?”  One of the students said to me, “Oh it’s not too bad actually.  But I was getting a bit sick of sitting there for so long and I just wanted to stretch my legs.”  Oh, how my heart warmed to him!

Last week, I said to Don, “Do you want to come home tomorrow?”  He just said without any enthusiasm, “Oh all right.”  (Yes, I know I wrote a blog entry a while back to say that it was all too hard getting him into the car with the lifter, but we seem to have it down to a fine art since then, and it has been going smoothly.)  I told him I had a nice piece of steak that he likes and he again said, “All right.”  (Steak is one of the things that of course they don’t do; when you have to provide for 124 meals in one go it’s not easy to  do “medium rare” or whatever the preference is!)

When I turned up in the morning, the nurse took me to one side and said, “He is adamant that he doesn’t want to go home.  We got him up and into the wheelchair to go home but he says he doesn’t want to go, and he has been saying all morning that he isn’t going home.”

I asked Don about it, and did he not want to come home after all? and he just said, “No.  It’s all too much trouble.”

“For you?” I asked. “Too hard for you?  Or do you think it’s too hard on me.”

“Both.”

I wasn’t sure what to do.  Was he just thinking of me, pushing the wheelchair along our difficult gravel (and deeply rutted) driveway, and the process of getting him in and out of the car?  Or was the effort really gettng too much for him, and he was deflecting that by saying it was too much trouble for me?  I didn’t want to pressure him, so I said, “Well I can stay just like I usually do, and sit here with you.  But I’ve got the steak out on the bench at home to thaw, and some other stuff I got ready for lunch, so I’ll just go home and put that away, and then I’ll bring the dog back with me and I can stay.”

“Oh no, if you’re going away again, then I’ll come with you.”

And so he came home after all.  And the transfers went smoothly and quickly, and we watched a couple of episodes of Seinfeld, and then we had the steak which he enjoyed very much and some tiramisu that I had (left over from something I made for the church), and then we watched a couple of episodes of A Touch of Frost and then Question Time in Parliament.  He dropped off to sleep during that (understandably!) and it was quite late when he woke up and decided it was time to go back.

So he had a really good day at home, just a normal sort of day like we used to have before.  And when I asked him if he’d enjoyed it more than staying in his room, he said yes.

But still, I do think coming home is losing its shine, and one of the sisters told me a while ago that she thought he was becoming “institutionalised” and getting so used to the place that he is more comfortable there than going somewhere else.  Don’t know how I feel about that.  I suppose it’s better for him, rather than hankering to be somewhere else, to be in the place you feel safe and comfortable.  But it’s so nice when he comes home and we can just have a meal together, watch TV in our lounge room, sit out the back and look at the Lake, just be normal.  But it seems he is getting to the point where he would prefer to be staying put.

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?