Last week I decided the time has come to activate my Enduring Power of Attorney – Mandat de Protection Future. Leaf has now lost so many of his faculties, he wouldn’t be able to make major decisions. In the past few months his AD has speeded up and whether it will plateau or keep accelerating, only time will tell. He admits to being in a state of confusion a lot of the time.
TAKING RESPONSIBILITY
This horrible situation brings home to me yet again that the Leaf I fell in love with and eventually married, is fast slipping away. My soul mate is leaving me. It’s a really tough one but a sad fact of so many lives. We have to face up to the prospect of a different future, a new reality. Burying our heads because it’s too distressing to contemplate is counter-productive. We need to come to terms with what is likely to happen, plan ahead as far as is necessary and do our best to live the remaining time together as fully as possible.
GETTING OUT AND ABOUT AS MUCH AS WE CAN
Most of us in the Western world were born in hospital and most will die in hospital. How far from nature can we get? I will be doing all I can to ensure that Leaf is with me at home for as long as possible in the later stages. I won’t, of course, have complete control over this and I have to be realistic. His condition may become impossible for me to deal with. Bearing this in mind, I will need to arrange extra home help in the later stages if I want to keep him with me. Which, at the moment, I most certainly do.
SUCH AN IMPERSONAL WAY TO COME INTO AND TO LEAVE THIS WORLD
Currently I/we get four hours help a week. I’m now at the stage of applying for eight hours a week and am optimistic this will be possible. Leaf, when not painting, needs almost constant supervision. Most of the weird stuff he gets up to is harmless but some day it might not be. At the moment, the one place where I can leave him to his own devices is the studio. With good heating and his favourite music, he can paint for up to three hours. Focused on producing his colourful paintings, he’s happy. It gives me a chance to nip out to shop and have a quick coffee in town. A welcome relief. I hope it lasts.
MICRO-COSMIC by Leaf
When he’s not painting, I must find something to keep him occupied, he has no initiative, so that’s not easy. If he has nothing to do, he wanders round the house in a daze re-arranging things, losing things or going through our clothes and leaving them strewn about. If there’s the chance of an outing somewhere, he comes too of course. Mostly it’s okay but his presence does change the dynamic and he needs guidance – I have make sure he doesn’t wander off in shops, help him choose food if we’re at a restaurant and find a loo wherever we might be.
WONDERING
All of this prompts me to think about how life will be when he dies – assuming he dies before I do. It’s as though the grieving process has already begun. It will continue up until the moment he goes and beyond. What kind of life will I have without him?
How many of us in relationships think about coping if our partner is the first to go? How many of us will be able to be autonomous? Will we have a purpose to our single lives? Have plans or ideas we want to put into action? Be able to see the beginning of a new era? Cold though it may seem, surely lots of us have let these thoughts cross our minds? Or perhaps not.
WHO KNOWS WHERE THE NEXT ROAD MAY LEAD?
Of course, to be able to face the likelihood of aloneness when we’ve been a partner for a long stretch of time, we will very likely have thought about death as a process. Some of us in the West find the inevitable too frightening to contemplate and many will have decided, for whatever reason, that this life is all there is. After we die, our bodies will slowly disintegrate and any remnant of us will have gone for ever.
PART OF THE UNIVERSAL ENERGY
I’m happy to say that Leaf and I, whilst not religious, have no such conviction. We are beings of energy and our spark of life if you like, will continue – in what form, we have yet to discover and that’s an extraordinary and thought-provoking prospect.
When someone turns out the light, the energy that made it happen doesn’t simply evaporate. Energy exists all around us. We can’t see it but we know it’s there. It’s wonderful to imagine our loved ones discarding their cumbersome bodies and flying freely even though we know the pain of losing them will be excruciating.
OUT INTO THE UNKNOWN
As KAHLIL GIBRAN so beautifully puts it:
In the depth of your hopes and desires lies your silent knowledge of the beyond…
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is it to cease breathing but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountain top, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.
doodahtwo.home.blog 
Hi Sue
Your writing is always interesting and thought-provoking, Sue we all have to keep going as long as one can to care for loved ones safely and lovingly. It will be very difficult at times so help and support from our family and friends is crucial.
I love Leaf’s paintings. It is so good that he is focused on something positive.
As for what happens when we die –
In Sikhism we believe our maker is that energy and we all just merge with.
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Thank you Kirpal. As a Gemini, I think of myself as a communicator; someone who raises ideas for others to mull over.
We certainly do have to keep going and friends and family (if we have one) are who we turn to. However, I would not want to underestimate the work of thousands of good people around the world in the caring professions. They, of anyone, know how the problems and can offer fantastic support.
We are inclined to your belief – we can call the Universal energy any name we wish and that’s as it should be. In the end (sorry for the pun) it all comes down to the same concept which modern science doesn’t have the tools to analyse and explain and therefore denies. Sad for those who have such a nihilistic attitude. Of course, many of them change their minds when they’re nearing death themselves.
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Sad but uplifting at the same time. We all have to face up to certain decisions as the years pass, and need courage to do so. Lots of food for thought
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Hello Jenny – just like life, often sad but uplifting too.
I hadn’t thought of courage as such, but yes it’s not easy to prepare for death and loss, but if we do and can rest easy knowing we’re prepared, we can get on with enjoying today.
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Hello Sue
Your blog covers many issues that involve personal courage to face difficult decisions and sad outcomes.
If one is facing a life threatening illness or old age then decisions will need to be made for the near future and end of life.
When one is caring for someone with AD difficult decisions have to be made on the sufferers behalf as they are unable to do so for themselves. There can come a time when it is just too much of a task and responsibility to care for a loved one at home. What a blessing that Leaf can occupy himself, for some of the day with his painting, long may that continue.
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Yes, it’s likely to come to most of us, particularly us women.
I completely realise that looking after Leaf may become too much but we have the gite and I feel that could accommodate a carer if necessary.
Leaf is also able to spend time colouring – really good for concentration, focus and hand-eye coordination. He has produced some beautiful designs which eventually I plan to make into cards. Maybe I might get some done for the expo if I can find the time.
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Hi Sue, its so brave of you to lay bare all your emotion and struggles which you have to cope with daily, but also a gift to us all.
The native americans knew that the first step towards the spiritual path was the realisation that we are alone and the last step that we are all one.
Even the physicists have discovered through quantum physics that there exists a thing called quantum entanglement, which means that we are all interconnected, ie we are all one! It took them ten years of experiments to find out.
But back to your belief that when we die our energy lives on; of course, the universe does not waste anything everything is for ever recycled, for ever transformed from one thing to another!
This is a lofty thing, you need to stay focused every day, to make your lives bearable.
So that Leaf’s paintings give all joy and hope.
With much love Lilix
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Hello Lili, I don’t see it as brave, I’ve always been a very open person. I think it is comforting to others to know there are those who, deep down, feel like them. After all, as we both know, we are all one, suffering in various but not unique ways. To connect with each other is all-important.
Good old, it’s not young, Quantum Physics and family – they have foxed the white-coat brigade who are forever trying to fit a square peg into a round whole. When it comes to the wonder of our Universe, they will never be able to analyse or explain it. It’s simply forbidden and I find that hugely comforting.
It’s pointless to try and estimate the inestimable or indeed to quantify the unquantifiable!!!
As for homelife these days – it’s a roller-coaster but we get by. Luckily love is with us. xxx
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Hello Sue
Another thought-provoking and inspiring blog . It’s also really good to read other people’s replies and their ideas .
I especially love the end of your blog as had forgotten all about Kahlil Gibran’s writings ! I used to love them so you have inspired me to read some again !
I find myself thinking and wondering about what the future has in store more these days but try and catch myself from speculating and try and go back to the present! I also believe we are energy and that will not fizzle out when our body goes .
I am very happy that Leaf is still engrossed and enjoying his painting and looking forward to the Expo .
Lots of love xx
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Thanks Gail. I value comments enormously – they add so much to the posts. We have now selected paintings for the expo and I’m hoping we can set it up within the next month or so.
I often dip into The Prophet and am always inspired by what he has to say. The one on marriage is particularly relevant to this post. Here’s the link for your remind yourself. https://www.youtube.com/watch?v=HHNJa5vXMns See you soon. xx
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