Multiple Sclerosis Carer

Family were moving house last week, and asked if I could help for a day or two.  Don was keen for me to go and lend a hand, so I rolled my sleeves up and helped wash windows etc for two days.

I was only gone for two nights, but when I came back Don was agitated and anxious, wanting to know why I had stayed away so long.  It was about 3 pm when I arrived back, so I stayed with him until dark.  Thought he was OK and back to normal but that evening about 9 pm the nursing home phoned  and asked if I could talk to him, so I went round again briefly.  He had thought I was gone again.

I’ve a slight sense of despair over all this, because actually I’d made the resolution that this year I would go away more often.  Not big trips or holidays or anything, just a couple of days visiting my sister now and then, or a church camp, things like that.  But it seems that any absence is too much.

But one of the staff suggested that I visit too much, and was making him too dependent on me.  I remembered that when Don first went into the nursing home, the sister in charge advised me not to visit every day.  She said, “People come and visit every day, and it stops the resident from  adapting to the place.  It makes them overly dependent and not able to settle properly.”

Of course I didn’t follow that advice.  Guilt, and love.  So I visit every day.  But, perhaps it isn’t the wisest thing.  Perhaps I could start to have maybe one day a week off, and not go there.

Who do I ask for advice?  Where is the counsellor for the carer?

It’s 42 years ago but I still remember vividly.  We didn’t have the telephone on in those days (can you imagine that, now?  we didn’t have the phone on!) so after he was born I phoned friends who had a phone.  It was 2 am and Margaret answered the phone, was told we had a baby boy (another difference in those days, you never knew in advance!) weighing in at 8 lb 12 oz, and everyone was fine.  I assumed Don was sleeping at their place awaiting the news, but later learnt that Don was too tired to wait around (uni had started, lots of assignments, overloaded already) and had gone home.  So Margaret took the call, muttered the news to her husband, and they both went back to sleep.

I never quite forgave Don for not being on deck that night!

Ross was such a cheerful child, and very sociable, always interested in people.  When he was about five, in Kindergarten, we were living in the outback town of Bourke, and he would walk the five blocks home after school, often stopping at the service station to talk to the men working there.  How did they fix the cars? How did they know what was wrong with the cars?  How much money did they earn?  The men told Don about these conversations with great amusement.

(Yes, another difference from that era is that children did walk home from school, and survived the experience!)

But it isn’t the five-year-old I really miss.  It’s the man, the adult, who became my good friend.  I miss him so much. 

Don was home today for lunch, and I said to him, It’s Ross’s birthday, do you want to do something special?  But no, it was all too hard, so we just had a quiet day at home.

Happy birthday, Ross, wherever you are. 

I was a bit unfair in a previous blog entry when I described the activities as being just plonked in front of the TV with a lot of semi-comatose residents.  The activities officers actually go to a lot of trouble to have something reasonably interesting each day.  A church group comes in weekly to put on a concert on Monday mornings, there are bus outings on Wednesday (Don too disabled to go, however), church on Thursdays, Bingo on Tuesdays, and every Friday afternoon there is Happy Hour, where they serve savouries and drinks (wine, beer, Scotch – Don has gone a couple of times and enjoyed it).

Now that they are getting him up more often, he does enjoy the concerts, and likes to go to them if possible.  He finds some of the songs poignant and emotional, but that isn’t a bad thing which he is first to admit.

I guess the thing about getting up and being in the activities room isn’t so much about the activity itself, as about just being up and among other people.  Wheeling down the corridor so often, is getting orientated to where we are.  In the big room staff come by and have a word, other visitors strike up conversations.

But last week the singing group failed to arrive due to a glitch at the last minute.  Don hadn’t wanted to get up in any case, so it made no difference.  But when I went to the big room, the activities girl was brightly getting everybody together to engage in a game of Simon Says.  I guess it was the best she could do on the spur of the moment, but it was so puerile, so very much treating them as children, I was thankful my poor husband was spared the indignity.  I made my way to his room where we read the paper together and talked about the headlines, and read a couple of magazines.

Scrabble, bingo, word games — fine.  But I draw the line at Simon Says.

Don seemed to me to be going downhill, and a couple of the staff also suggested that he was deteriorating.  He seemed more tired, and was sleeping a lot of the time I was visiting, was less alert, and seemed to be getting rather confused and disoriented.  I resigned myself to the situation, and thought I should just be thankful that he has been so stable for so long.

Then the head nurse came up with a different theory and a different solution.  This is a male supervisor who is loud and dogmatic and can be abrasive.  He announced in his dictatorial fashion, “Don’s got cabin fever, that’s all.  We’ll start getting him up more often.”

“What do you mean, cabin fever?” I asked.

“He’s going stir crazy,” he said. “He only goes out of his room when you take him home once a week, but otherwise he’s just staring at those four walls all day, every day.  The girls always ask him if he wants to get up, and he says no.  But we’ll take him to the activities room every day.”

Yeah, right, I thought to myself.  So, sitting in front of the big TV in the activities room, lined up with all the other semi-comatose residents, with nobody speaking and most of them asleep – that is REALLY going to make a difference!

The next day I turned up and yes, he had been taken to the activities room, and sure enough, I found him sound asleep in front of the TV among a throng of  silent, mostly sleeping residents.  I said Hi, and got a chair, and watched the TV with him for a bit, and chatted to the staff or the other visitors off and on, and quietly read him bits out of the newspaper when we could.  Stayed in the big room until after lunch when I wheeled him back to his room.  That has become a regular pattern over the past few weeks.

Here’s the thing.  The bossy head nurse was quite right!  It only took a day or two, and Don was back to himself again.  More with it, less tired, more able to sit up properly for meals, taking an interest in things again, and so on.  They also told me that he had been getting very restless and unsettled during the nights, due to the boredom and long sleeps of the day.  But now, getting up and being among all the people for long periods was taking more energy, so he was tired by night and sleeping better.

Just goes to show, people definitely need people.

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.