Multiple Sclerosis Carer

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

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"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.

We had our six-monthly visit to the neurologist yesterday.  He doesn’t pretend that he can offer Don any treatment, or any kind of hope really, but he monitors how Don is going, and always stresses that if anything changes or there is any sudden deterioration or anything that is worrying us, to get in touch at once.

As soon as we came into his office, he said with some surprise, “Don, you seem quite improved since your last visit!  I heard you talking to the receptionist and was aware how strong your voice was, compared to your last visit.  And you’re sitting up quite strongly in the wheelchair, whereas I remember last time you had to be supported by the head rest.”

He continued with his tests, which are in another room but seem to consist mainly of Tell me if this is sharp or blunt?  Is this hot or cold?  When I do this, tell me when the tingling stops.  And, Push hard against me with your feet, with your arms.

Then he had a bit of a conversation, clearly trying to assess the mental state, so when they came back into the little room where I was waiting, I helped by holding out the crossword I was doing and said to Don, “Five letters, Soviet labour camp” and without even hesitating Don said “gulag”.  (Yes, I was impressed too!)

The doctor was clearly rather bemused by all this.  He finally said, “Don, you do have primary progressive multiple sclerosis.  That means what it says, that it is a gradually progressive disease and the best we can hope for is to slow down the deterioration or hope, at best, that the condition will plateau for as long as possible.  But I have to say, you are showing clear signs of improvement in almost every area.  I hasten to add, the improvement is not huge, and there is no Lazarus turnaround, and basically your situation hasn’t changed” (I presume, meaning he still needs the nursing home).  “But there is obviously some re-myelination taking place.”

I’ve explained before that the condition of MS occurs due to the eating away of the myelin sheath around the nerves, and in fact the reason the symptoms are so different for various MS sufferers is that you can’t predict which nerves will be affected.  I said to the doctor, “I thought you told us once before that the myelin sheaths can’t regenerate.”

“Yes,” he said. “It was believed that was so.  We know so very little about multiple sclerosis, despite all the research that is going on.”  He gave us a smile and said, “I don’t want to see you for another year, unless something changes.  But whatever you’re doing at present, I suggest you keep doing it.”

Thank you, God.  And thank you LDN.

This week has been a bad week for Don, so I’ve spent longer with him than usual.  If I get properly prepared, I am quite happy to spend 3-4 hours there, although it’s sometimes less than that.  I see other carers spending long hours sitting silently next to a spouse who is incapable of responding or in many cases, even of acknowledging their presence. We are so fortunate it isn”t like that with Don.

People ask what I do all the time I’m there, and somebody even said, Doesn’t it drive you up the wall, spending so long there?  The answer is no, not really, because we really are together, in the sense of still sharing our lives to a large extent.

I take a sandwich for lunch and keep teabags in his room, so I can go and make us both a cup of tea from time to time.  First thing when I arrive is to open the mail (that I collect as I leave the house) and we talk about paying bills etc.  Then I read him the paper.  We are newspaper addicts, and have been getting the paper delivered daily for as long as I can remember.  On the few occasions I’ve gone away for more than a couple of days, I’ve arranged for him to get the paper, hoping a visitor or staff member will read it to him.

I don’t read ALL the paper of course.  He wants to know what’s in the headlines, so I just read the opening paragraph of each news item and he tells me if he wants me to keep going.  Then I flick through the pages and read anything that strikes me as interesting, till I get to the letters to the editor, and I have to read most of those out loud.  (His glaucoma prevents him from reading much but I think also the MS makes it hard to comprehend the written word, easier to hear something than struggle to read it.)

By then it’s about lunch time, so I put the TV onto a channel with something watchable.  I get frustrated that I often arrive to see him watching SBS (the multicultural channel) listening to the news in Greek or Arabic or something.  I can’t believe the staff don’t have enough sense to help him with the channels – the buttons on the remote are quite small and a bit complicated.

After lunch if there’s a movie on we might watch that, or if Parliament is sitting (yes I know this is sad but I’m going to tell you anyway) we watch Question Time from start to finish.  If there’s nothing worth watching (which happens frequently) I might put on the current talking book that the blind society sends us although I’m always keener on that idea than Don is.  It’s called Vision Australia nowadays.

But usually Don has a quiet snooze after lunch.  I used to leave whenever he went to sleep, but he would always stir no matter how quiet I was, and ask in a disappointed way, Why are you leaving?  and ask me to come back later.

Now I’ve got to the point where I ask myself what I’m going to do when I get home, and realise that a lot of things I can do in the nursing home.  So I’ve put a little foldable table in his room, and I always take along a bag of stuff.  So when he goes to sleep I sit at the table and do the daily sudoku and crossword, then write any cards or letters that have to be sent, and do any paperwork (forms, cheques etc) that can’t be done online.  I keep a book on his shelf but these days I don’t seem to be reading much.

My biggest problem is that by the time I get home it’s mid-afternoon and the day is more or less gone.  By the time I take the dog for a walk and check my emails and waste lots of time doing nothing much, the day is nearly over.

But anyhow, that is my general daily routine at the nursing home.

I see that Delaware has become the 16th state in the USA to legalise the use of marijuana for “people diagnosed with cancer, HIV/AIDS, multiple sclerosis, decompensated cirrhosis, amyotrophic lateral sclerosis (ALS), agitation of Alzheimer’s disease, PTSD, intractable nausea … (etc)”.  There is quite a lot of pressure for other states to follow suit.

I’m all for allowing its use if it helps people with these terrible diseases.  I can’t believe anybody would be so rigid in their anti-drug stance that they would deny it for medical purposes if it would help.

But I still do not understad in what way it does help!  I’ve tried to find out from the online sites that strongly promotes its use, just what is so good about it, but can’t find anything specific.  All I can gather is that it does help relieve pain. 

As I’ve said before, with Don’s MS the pain doesn’t seem to be an issue so it’s not really relevant to us.  But if it was I think we’d be trying the pain-relieving medications that are so prolific nowadays, and also are so very effective.  I talk to a pallliative care nurse for example and she tells me there is no reason for anybody nowadays to experience the unbearable pain that she used to witness often.

I’m not being dogmatic about this, just wanting to know.  Is marijuana a better pain-reliever than the prescription medications?  Or is there some other advantage to the use of marijuana that I don’t know about?

If somebody knows more about this than I do, please enlighten me.

I woke up to the gradual realisation that Don was in the bed beside me.  It felt just the way it used to, and he was so big and warm and comfortable that I snuggled in close and was very content.  As my mind began to clear, I tried to remember how we had got him into bed last night, and vaguely thought I must have had somebody with me to help.  But it was so nice and warm and snuggly, I didn’t think about it too much, and drifted back to sleep.  Later when I woke up properly, I was actually quite surprised to see he wasn’t there.

I told Don about it and he just said that he dreams regularly that we are together.  I did know this because his dreams are so vivid they sometimes become confused with reality the next day.  A couple of days ago he asked me anxiously whether I’d paid the motel bill, and when I looked blank he said, Didn’t we spend last night in the motel? — and then immediately answered himself and said, Oh no of course not, I think I must have dreamed that.

I think Don dreams quite a lot — I did write a blog post about MS and dreams a while back – but I wish I dreamed more often.  Especially ones like this morning.

There goes April, without one single blog entry from me. And yes, a whole week of May has passed, to boot! (“to boot”, what does that mean?! What the heck, I’ll leave it in.)

Put the silence down to a busy month, with school holidays which meant looking after a six-year-old for a fortnight – a task that gets more enjoyable every time, he is at a fascinating and joyous age – plus visitors over Easter, and then our son moving back after five years in Kiwiland and staying with me for two months until he found a job and a place to live in Sydney (has both, as from last week). And a couple of trips to Canberra thrown in.

And I’ve been ill, to boot. (There it is again!) Bronchial congestion or some such, three lots of antibiotics later, two types of puffer, menthol fumes with a towel over the head at nights, yet the death-rattle is still alarming and I have a most spectacular wheeze when I cough but even more impressive when I laugh.

That is the end of the health report (promise!) and I am resolved to write up my blog more regularly. There is quite a lot I want to say. But it will have to wait for another day, as procrastination is my chief hobby (just gathered the last details that the accountant needs for the 2009-2010 tax return due last June). And I must go away and wheeze for a bit.