Multiple Sclerosis Carer

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 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.

How do you celebrate a birthday for someone who is (a) bedridden and wheelchair-bound, thus unable to go anywhere exciting (b) living in a nursing home, thus has very few needs (c) living in a nursing home, thus has very limited space.

What we did was to book the wheelchair taxi so that Don could come home for the day, and we had lunch together then spent the afternoon sitting on our deck looking out at the Lake.

Not only looking at the Lake, but through sheer serendipity some good friends phoned up and said they might visit – so we not only had visitors for the afternoon, but the visitors came armed with a bottle of bubbly for the occasion, and with our family visiting from Sydney as well, it turned out to be a bit of a party.

The gift he enjoyed was called a “digital photo frame’ – sit it on his table in the nursing home and it shows a sort of slide show of all our family digital photos.  Brilliant, eh?

Happy birthday, Don!  (And the BIG one is next year….)

It’s a bit of a balancing act, trying to be a real Nana and also trying to give love and support to a husband in a nursing home with MS.

For some time, I have spent two days a week looking after my little grandson Gavin, aged four. (Daycare fees very expensive, and daycare hours very long.)   We have decided to reduce this amount of time, mainly because Don was losing out too much in the arrangement.  I visit him every day, usually spending several hours with him – but there’s nothing for a four-year-old to do for such lengths of time in a nursing home, so on the days Gavin is with me I just pop in briefly. Don doesn’t complain but I know he misses the visits, misses me reading the newspaper to him, misses the shared TV watching, misses my company over lunch. And I feel quite torn between the two in terms of my time commitments on those days.

So I am going to mind Gavin on every second Monday.  Enough to stop neglecting Don, but I will still get some Gavin time.

He is an imaginative little boy and we have some happy times.

Setting up “dinner-time” for all his toys:

Helping:to wash the car — by washing his toys:

And he loves cooking with Nana: helps mix up cakes, biscuits, scones, or coloured jellies:

Don has been in the nursing home for five months.  I visit him every day, and so we are able to spend several hours together every day.  I wheel him out into the gardens and read him the mail, or we go to the activity room and chat with other residents or visitors and I’ll read him the newspaper. Or if we stay in his room we’ll watch TV together (cricket, at the moment!) and I’ll read him Christian Century (he still subscribes) or the lectionary for the day, or leaf through the various magazines we still get to see if there is anything interesting.  Sometimes we listen to a talking book or a CD.

From all this you will realise that Don’s eyes are no good.  It’s nothing to do with the multiple sclerosis, although that can cause blindness.  And Don’s not blind, just “vision impaired” due to glaucoma. It’s also hard for him to manage the TV controls, all the buttons and numbers are quite small.

What I am leading up to is that I also print off my blog entries from time to time and read them to him, just to keep him up to date with what I am doing.  So yesterday I read him a couple of entries, including my New Year entry that describes how our son Ross had searched for a kangaroo they hit, and knocked it on the head to put it out of its suffering.  And that for me, that meant that the best thing I could do for Ross’s memory, as well as for myself, was to put away the suffering and get on with life.

Don said drily, “Are you sure that’s what it means?”
“What are you talking about?” I asked.
He looked me in the eye and kept a straight face.  “Well I could interpret it to mean that you just need knocking on the head.”
I took a swipe at him.  “You”ll miss me when I’m gone!”
He just laughed – and so did I.

Life goes on.

“Christmas in the Nursing Home” — Sounds like everyone’s nightmare Christmas, doesn’t it.  If you had to choose one single place on this earth you would rather not be on Christmas Day, a nursing home would be pretty much up at the top.

Well, actually it wasn’t that bad.  The staff at Bayside Nursing home, where Don is now a resident, went out of their way to be cheery and chatting with everybody, had the residents laughing as often as not. And the food was like the Christmas fare everywhere; prawns and turkey and ham; offers of cider or wine; pavlovas and Christmas cakes and puddings.  And by the time I arrived, Santa had already been around, with a gift for every person there, courtesy of the giving tree somewhere – they were good presents, too, not just a tin of beetroot or a Go-Lo keyring, eg Don got a hat and some Brut men’s cologne.  There were decorations up everywhere, and Christmas music playing, and the place was milling with family groups, children, teenagers, wheeling their oldies with them.

Lots of visitors like myself, sitting around the meal table, so we had a good conversation, and Don joined in with one of his jokes (a shearers joke, so corny it’s embarrassing) and a piece of trivia about Ben Chifley (wanted to go to the movies so he queued for tickets like everybody else!) and teased one of the nurses (his favourite) – so he had a good day too, and even seemed to shed some of the lethargy that seems to be with him lately.

With the death of our son Ross I had been dreading Christmas.  The absence of one so beloved would be overwhelming, and would overshadow the whole day.  Being at the nursing home was different from any of our previous Christmases, and we were surrounded by people who held no memories for us, so it turned out not to be the ordeal it could have been.  A really enjoyable day, in fact.

A merry Christmas to all my readers!