jmgoyder

wings and things

Caring for the carer

I am on the brink of facilitating a couple of carer support meetings, so I thought this would be a good place to air some of my thoughts beforehand.

Carers/care-givers – who care for and/or about loved ones who suffer from diseases like Dementia – are, according to the latest research findings, amongst the loneliest people in western society. The loneliest people are, of course, those with Dementia, especially those in care, like my husband, Anthony.

I have always loved being alone and am comfortable with solitariness. I am not naturally gregarious but I do enjoy the company of friends. Until recently, I have never actually felt lonely, but now I do – acutely. I miss Anthony being home with me, with Ming, milking the cows, chopping firewood, lighting the Aga, cooking steak on the barbecue, washing the car, watching ‘The Bill’, snuggling up in the big bed with toddler Ming in the middle.

But these memories are now nearly two decades old. More recent memories are stark with the years of frustration, avoidance, anger, sorrow, exhaustion – mine mostly. Having to quit my job in order to take my husband to the toilet, to stop him from falling over, to hide the car keys so he wouldn’t try to drive, to turn taps off that he’d left running, to open the vegemite jar when he couldn’t….

For awhile Ants and I hid what was going on from little Ming but it wasn’t long before Ming had to help out. I became so exhausted that I ended up in hospital and after that Ming and I shared the night shifts with Anthony.

And then – years later – the nursing home decision, the subsequent paradox of guilt and relief and now – more years later – the ongoing grief and loneliness. I miss him so much!

I am very glad to have the opportunity to facilitate these carer support groups because I have developed a few ways of coping better than I used to. Until I became involved, as a volunteer, with these groups, I had no idea that there might be some support for carers out there somewhere. If I can be a part of this, I will be so glad!

 

 

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Interesting!

The other day a couple of friends came into the nursing home and Ming and I happened to be there too.

After the usual greetings, banter and catch-up conversations, I told these lovely visitors about how frightening it was a few weeks ago when Anthony lost consciousness on two occasions.

As I was describing all of this to our visitors, in my usual dramatic way, I suddenly realised that Ants was listening intently.

Me: Sorry, Ants, but it totally freaked me out when you lost consciousness.

Anthony: What rubbish!

Me: Sorry I talked about you in front of you, Ants….

Anthony: It was quite interesting actually.

 

 

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Galah!

Today Anthony was perky, lucid, vocal and even sarcastic!

I had picked a double camellia bloom from our favourite tree but forgot to take a photo (sorry, flower-lovers!)

Well, he loved it but its stem was too short so one of the carers brought a bowl in so we could somehow keep it alive until tomorrow. There were many admiring exclamations from staff and I felt quite the gardener – ha! On this first day of Spring, there will be many more blooms and I will take them in every day because it gives Anthony such delight.

My mother, Meg, visited this afternoon and she, too, admired the double bloom.

Meg: This is a potentially prize-winning flower, Anthony!

Anthony: Yes.

Me: Ants, it’s my tree – remember? I paid a small fortune for that tree!

Anthony: Yes, but I nurtured and loved it.

Meg: I think God created it but did you have a hand in it too?

Anthony (smiling): Yes.

Me: I’m the one with the foresight to buy a rare tree!

Anthony is silent.

Me: Have I upset you, Ants?

Anthony: No, but you are irritating me.

A lot of banter followed this, then my mother went home. I put the food channel on for Ants and, as usual, pretended to go shopping for chocolate or blue cheese, saying I would be back later.

So, after a very panicky few weeks where I thought Anthony was on the brink of death, he has now come back to life it would seem. Surreal! How does this happen? It is beautifully scary but so disconcerting.

The last thing he said to me as I left this afternoon was “You are such a galah, Jules!”

Yep, I agree!

 

 

 

 

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Last rites

Today, my best friend, Tony, an Anglican priest, came all the way down from Perth to pray for Anthony, Ming and me and it was beautiful. Ants was up and in his armchair, and awake, but not aware (I hope!) that it was a last rites situation. Tony read prayers and Ming and I also read bits and pieces from the Anglican prayer book – passages that pertained to our situation. Then Tony annointed Anthony with the holy oil that has been sitting on the kitchen mantle piece for years ever since a nun friend blessed him years ago when he was still living at home. Sister Romanus kept her holy oil in one of those now old-fashioned camera film containers and, after so long, it had turned into a putty consistency.

After the formalities, Tony held Anthony’s hand and said his own personal prayer for all of us. While he was doing this, Ming and I also put our hands on Ants. We were all emotional but not to the point of crying, whereas Ants seemed a bit nonplussed but admitted that he understood more than he let on.This was not in reference to the prayers but to our conversation later about his torana! I am curious to find out tomorrow if he remembers today’s experience.

Ming and I will never forget today and, for me, the peacefulness that Tony instilled has slowed my anxious heartbeat into a normal thrum and my tears are less wretched. I don’t feel panicked any more. Anthony is probably going to scare the hell out of me more and more often with these TIAs but the joy of seeing him awake surpasses that. The fact that he appears to be pain-free is a blessing.

Thank you, Tony, for today.

 

 

 

 

 

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