At that time, he was working for a large construction company in Wellington. Today, he lives in a care home, around 10 minutes down the road from where I live.
When we’re not in lockdown, I visit him every day, usually in the evening. He’s no longer mobile, and there are rare occasions now when he speaks or smiles, but when he smiles, he lights up the room.
I want to talk to you about how we as a family have made lemonade out of this lemon known as dementia. I won’t minimise the gravity of this disease, nor will I glorify the ‘privilege’ of loving someone who lives with Alzheimer’s.
What I can do though, is tell you some stories which have lightened our heavy hearts when things get tough.
The first lesson is – don’t go hunting for the life lesson you are being dealt. I promise you, you will definitely learn lots from this journey. You don’t need to angst over what it is, it’ll come to you. And when the lessons do come to you, greet them with a thank you. There will be a gem in there somewhere for you to find.
I think the most memorable story I can share in regard to this strategy is the day that I was driven to apply for individualised funding for Godfrey, following a particularly fraught week with the care services and support systems which had actually created more work for me rather than relieving it.
Had this not happened, I might never have explored the possibilities which eventuated in us being able to resource in home care for Godfrey, which was far better tailored to his needs, and which allowed him to remain at home for as long as possible.
The second strategy I want to share with you, is about getting your children, your family and friends to support you. Over the last six years, I have learnt what amazing children we have. They’ve grown up, and I don’t need to protect them anymore. They can handle this, and they want to be involved.
I know I’m a control freak, and that no one can care for Godfrey the way I do, but others can care for him the way they do, and often he will respond differently to their different style. It took me too long to let others, including our friends, into this part of our world. I thought I needed to protect the way we were, instead of sharing the way we are now.
And finally, when the time comes for care out of home, you get to be a partner again, instead of being a full-time caregiver.
I remember how gentle the care staff were at the village, and how they firmly but professionally coaxed my grip from his care tasks. I had my lists and I wore my self-righteous, “I know best” cape with pride. But they had my number and they moved me back to a place of being his wife, while they did all the tough bits.
It creeps back in every so often, but even Godfrey, bless him, has enough capacity left still to take care of me.
Before lockdown, I’d been going to the village recently every evening to feed him his dinner, and I’d begun to impose the expectation on myself, so when I didn’t get there on time, I was arriving tense and Godfrey could obviously feel this.
This was especially present more recently as his eating had become laboured, and it was taking about an hour, so I would often finish feeding him and then leave. Recently, he refused to accept food from me. He actually clenched his teeth together, but we would eat for the staff. Even now, he knows better than I do what is good for me and even now in his limited physical capacity, he can make that happen.
So these are just a few of the key lessons and strategies that I’ve learnt as a carer of a loved one with Alzheimer’s, and in them, I have discovered the power I have to accept the challenges, to welcome the new relationships, to let go of the control, find the joy and live in the moment.
Sadly, on the 13th January, Godfrey passed away. Our thoughts are with Jenny and her family.
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