Family Weekend Together

It all started when my brother and sister (plus spouses) came to help me move all my stuff out of storage from Muswellbrook, last January.  Hard work, a searing 40 degrees (104 Fahrenheit), a journey home that became an ordeal when the tyre on the trailer blew out — but it was great working together, and being together, and spending a long evening together recovering from the ordeals of the day.  Just talking, catching up.

Plus, we had got sick of only seeing each other at funerals.

So we got together in March, and now it is October I have had all the siblings for the weekend at my place.  I have four brothers and one sister, so it was a good crowd.  It was a lovely weekend. 

Allan barbecued the flathead that he brought from his latest fishing expedition:

Bruce read the paper to Don as they sat on the deck:

And the ostensible reason for picking October was that my brother had a birthday, so of course we had a cake – with candles.

I have always known that Magna Carta was signed at Runnymede on 15th June, 1215 (which set in stone certain rights and protections eg habeas corpus which are still foundational to our laws today).  I also have known since I was a teenager that the very first aviation accident occurred on 15th June in 1785 (can you believe ?? – an “aviation” accident over 200 years ago) when two French balloonists were killed.

None of this is very impressive any more, because these days everybody can look up on the internet, type in “dates in history” and see what famous or interesting things happened on their birthday. 

Yes, I had a birthday.  Not a big zero birthday with bells and whistles and hoopla, but a nice day all the same.  Out for lunch to Don’s favourite place, where they do a nice beef eye fillet, medium rare, just the way he likes it.  Being in the nursing home, he does get pretty good meals, things he really likes such as lamb roast so tender it is falling apart on the fork — mouth-watering.  And a good variety, better probably than I used to cook when he was living at home.  But what they cannot do, obviously, is beef eye fillet medium rare.  How could you prepare a hundred or so of that?

I had been minding our little grandson Gavin for the weekend, so his dad came to pick him up and came to lunch with us.  He took a picture of us at the bistro, sitting in front of “Donald’s Wool Press” – in the photograph you can’t read the sign, but Don being an ex-shearer was quite impressed with it so we used it as a background.

A couple of days ago, I booked the wheelchair taxi and brought Don home for the day.  Trying to do this a couple of times a week nowadays.  We had lunch, sat out on the deck for a bit, then we watched the movie “Notting Hill”.

If you have seen the movie, you will remember there is a point where Hugh Grant and Julia Roberts are parted, and it looks like it is all over between them.  As he mopes about London, the background song is:

“Ain’t no sunshine when she’s gone
It’s not warm when she’s away;
Ain’t no sunshine when she’s gone
And she’s always gone too long, any time she goes away.”

I was only half listening, until Don turned to me and said very quietly, “That’s how I feel about you.”

People sometimes look a little askance at the notion that I go to the nursing home every day to be with Don.  Well, that’s why.

Don is remarkably accepting about his condition.  (He puts this down to his background of Presbyterian Calvinism…)  Doesn’t complain, doesn’t go on about all that he has lost, all that he can’t do.  Yes, there are times of real despair, such as my blog post about a year ago, Psalm 46.  And he suffers from depression, which apparently is an intrinsic part of multiple sclerosis, although I am sure that the depression is also a normal consequence of living with the limitations of MS and the frightful future one faces.

But you can take facing reality only so far.  And lately, I have been having some very difficult visits with Don, because he wants me to drive him to Griffith in the Riverina, to visit his mother.  She is 97 years old, and is in a nursing home, and they tell us she has not been well.  Actually she is in better shape than Don in a lot of ways, as she is able for example to get herself to meals independently, with the aid of a walking frame.  But now it seems she is deteriorating.

At first I just did the usual thing of being rather vague, and expecting by next day it would not be raised again.  Don has raised the idea a number of times in the past, but has not persisted.  But now he will not drop the idea, and is insistent that we go to Griffith for one last visit to his mother before she dies.  And is quite pressing about it, and practical too, wanting me to bring a suitcase so we can pack his things, and working out what time we would need to leave to do the trip in one day, stay one night, and then drive back the next day.

So I said we would need to work it out with our son David to come with us, as I needed someone else to help get Don in and out of the car, wheelchair, bed, etc.  And that would probably mean bringing our 4-year-grandson as well, so not to be undertaken at the drop of a hat.

But staff told me it would not be feasible even with someone to help, but we would need to hire a lifter and other equipment at the other end.

Eventually I said to him, Look if we were able to go to Griffith and stay overnight, you would be living at home with me, because it would mean we could manage.  So he got a bit cross and said huffily that I was trying to make difficulties, that I just didn’t want to go to Griffith.  My response was, that in fact I am more concerned about when his mother dies, because it seems unthinkable for us not to go her funeral, but I’m blowed if I know how we could do it.

Mothers Day

Must confess I was not particularly looking forward to Mothers Day.  Was all too conscious that last year we had the special meal (roast lamb of course!) but two sons were away – Stewart off on some gig where he was to be DJ,  and David and family at a little friend’s birthday party in at Newcastle (yes, I agree, who on earth would schedule a child’s party at lunchtime on Mothers Day??) – so there was just Don and me with son Ross, plus a visitor.  But we had such a nice time.

It pierces my heart to realise that that was to be the last special meal with Ross and that he had only another week to live.

But this year was all very different, and none of those thoughts really surfaced when the weekend actually arrived.

We had got an inflatable canoe, just to test out if we would really start going out onto the lake if we had a chance, so that made for a beautiful Saturday afternoon.

And on Mothers Day itself they surprised me with gifts, and cards and loving messages that I treasure.

Don came out for the day (wheelchair taxi) and we went to lunch at a nice bistro-cum-restaurant nearby, sorry no pix of Don or me, but a happy one of David and Dedra, and Gavin had a great time in the play area.

It was a lovely day.  And Don enjoyed it so much he wants me to book the place again and go out for lunch there on a regular basis.

Probably I should call this entry “Holidays” or “Breaks”, rather than escapes.  Because I love my husband dearly, and I don’t really have to “escape”.  Maybe “escapades” is nearer to the truth – except I’m not the madcap that that implies.

Last year I sometimes stayed in Sydney overnight – would spend time at the nursing home with Don as usual then leave late in the afternoon, spend the evening with my family in Sydney, and be back in time to be with Don by my usual time the next day, ie not mss a visit with him.  But twice – in August and November – I went away for TWO days to visit my sister, and both times I left the nursing home in tears with the guilt of actually going away and not being there for a day.

And in March this year, I had a lovely break.  I left a notice pinned on Don’s notice board to remind him that I was away for two days, so that he wouldn’t fret if he forgot.  And spent a great couple of days with family in the Blue Mountains and had a wonderful time.

Here is a photo at the actual waterfall of “Wentworth Falls”, which is at the end of the Darwin Walk.  Charles Darwin called in to Australia as you probably know, after he did the world-changing trip to the Galapagos Islands, and he was fascinated at what he discovered while walking in the Blue Mountains along this track.  This year marks the bi-centenary of Darwin’s birth, by the way.

(That’s me on the left, Ruth on the right)

Well, I made a momentous decision to actually go away for a break – a real break, a week’s holiday.  I am going away for one week at the end of June.  On the Indian-Pacific, to Perth, and have arranged to meet up with my Perth cousins who I haven’t seen since I was about 10 (except for one cousin, Ann) and have actually paid for the whole trip and also paid for my return flight home.

It all seems like a dream so far, except that I am starting to get into panic mode and start sweating, when I realise that we are now into May and this is all to take place next month, ie less than 8 weeks away.  How could I even contemplate doing this???

It was all so do-able when it was far in the future and not imminent.  Now, I am aghast that I have planned such a thing.

I haven’t told Don yet.  The trip to Perth on the Indian-Pacific is something that we always talked about doing after we retired.  How can I tell him that I am doing it, and he will be staying in the nursing home??????

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….)

Going through some old stuff, my sister found a letter from our mother, Jean Hanna, written over 40 years ago. She shared it with all our siblings at a recent get-together, and we marvelled at the sheer personality that came through in that letter – the humour, the wry comments about people, the exuberance of her breathlessly busy and productive life that she found so satisfying.  Cooking all day for a street stall, manning the op shop for the disabled, studying for her Lay Preachers Certificate, up till midnight writing sermons, providing a bed and a home for a few days for a neighbour’s children on the spur of the moment — and all this in the single week that she was writing about.

Your parents are always old, or at least “the older generation”, so it gives me a slight shock to realise that this letter was written when she was almost 20 years younger than my brothers and sister and I are today.

The year after we left school, the year we turned 17, my best friend’s father died suddenly of a heart attack. Of course I was shocked, and sympathised with my friend Carole.  But it was not till years later – after my own father died, in fact – that I realised I had had not the faintest inkling of what it must have been like for her, to lose her father.  When we met up at a school reunion two years ago, I expressed to Carole something of this, and how little I had really understood at the time. She said yes, it was hard, and shocking, but that she and her father were going through that very difficult teenager-versus-strict-father stage, quite a distant relationship.  What she really regrets, she says, is that she was never able to know her father as an adult, as a friend.  To only have seen him from a child or teenager’s perspective – to have no memories of the real person that she would have come to know in later years.

Vale, Mum.  You were not just a brilliant model for us all, but you became my best friend.  I still miss you, every day.

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:

I mentioned that two sons are now at home due to Don’s illness.

But for our oldest son David, multiple sclerosis had already caused major disruption and havoc for his entire family.  He and his American wife with their little boy took the enormous step of moving countries because of it.  Last July, they both gave up their jobs in Memphis, Tennessee, farewelled friends and family, and arrived in Sydney without work, without an income, without a place to live, but determined that David needed to be nearer to his father.

Having them stay with us for an extended period transformed life for Don and made things incredibly easier for me.  Not sure just how I could have coped without that.  They moved out after several months but still close enough to visit often, and come when needed.  Plus be there for moral support, which for me has been as important as the physical assistance.

Now they are re-locating to Sydney, where David and Dedra have found jobs and an apartment.  We’ll miss the proximity but Morisset is a stone’s throw — an hour’s drive from Morisset to Hornsby, for example — so hopefully we will still see them often.  I’ll miss being a regular Nana.

It’s no good wondering “What if?”    Because if Don didn’t have multiple sclerosis, no doubt their whole life would be different.  Not necessarily better, but different.  But if he didn’t have MS, life would be very different for a great many people.