I have often thought about what simple, yet empowering ways there are to relate to loved ones who have Alzheimer’s, if faith alone is not enough to keep hope and light in one’s awareness at such a critical time of the life journey together. I would say this post on just gave the answer:
Reality is merciless here. If your nervous system can’t take the way you live, it will break down again, even if you think that you ought to do fine, or that you are fine.
But there is a lot more to it than these stray thoughts, of course.
And it is a difficult and hard road ahead.
Still, there is hope. As I know from my own journey, even if my experiences – or that of many others – can’t be totally transplanted to this situation.
These past weeks, as I understand H, has been about putting out the big blaze. Now the real reconstruction work starts.
But it is a very simple kind of work in its essence.
They need help. And professional help. And it has to come from family and private funds.
And everybody needs patience and courage and needs to acknowledge, each in their own way and time, that the healing process will not lead back to the old life.
It will lead to something new, which – frightening as it may seem now – is actually the best. For example a more flexible and realistic and loving and communicative attitude towards … everything.
That’s a tall order.
For old and frail people like H’s parents.
But it need not be perfectly like that.
There just needs to be a movement – towards change.
That will give hope.
As I get older I find that I still struggle with fears, perhaps more so than before – fears that come out of nowhere.
But, I suppose, founded in reality. Or potential reality.
Fear of growing old, dying suddenly, getting ill, becoming handicapped, losing Char or Jay like that, etc.
Those and other fears. But the physical ones – about physical danger – seem more pertinent. They circle like shadows of sharks.
I have before berated myself for those fears, but as I grow older I also find that the only way to deal with them properly is to accept them completely.
And then use the rest of the time to the best of my ability, regardless whether the fears come true or not.
It is difficult but it is the only way. Otherwise you get a vicious circle with fear of … fear.
And I could say the same about a lot of other sharks.
The chemo choice is not about managing cancer, it is about managing fear. And that I know for sure.
And that is something I will use all my resources to help her with, because as long as there is life and no reason to believe it ends soon then that should be a life fully lived, not half lived. And a life half lived is a life in fear.
Or conflict. So no calls to my brother trying to persuade him to be less harsh with my mother. I’m not even sure he was “harsh” – maybe just blunt. And, of course, afraid on her behalf – of her making the wrong choice. But my mother made it sound, well, different … “I think he thought I was crazy” she said on the phone.
Well, that I hardly think my brother thought, much less said. But it just goes to show how vulnerable my mother is right now.
But fortunately, that is, as far as we know anything else, an emotional vulnerability. There is nothing more physical for the moment.
And that is what we must face. And deal with.
Management of fear, not cancer.
Although the two tend to be closely related.
But it is good to keep that in mind, what it is really about – when you try to help.
It is about that – and so it is about my mother’s peace of mind.
So no calls to my brother.
Whatever choice my mother makes there will always be uncertainty for me, and probably for the rest of us as well. Chemo won’t kill that. The chances of her surviving until 80 or 75 or 85 aren’t really as important – really – as the quality of time that we spend together and the quality of time she makes for herself until she needs to leave this dimension … It is a choice of how to live best that does not really require an answer to how long we will live or whether or not my mother decides to have chemo or not.
It is a choice about how to empower and uplift and improve relations. And that is always something that should be in focus, although sadly it rarely is until the demand is great.
But I feel empowered even so. I feel encouraged thinking about all the things I can do to share some beauty and joy and power, no matter what turn events take.
A very difficult and delicate balance, which I have often written about, and I will do so again. But it is important to keep in mind. Especially in situations such as this, where you are fearing for a loved one and pondering scenarios and outcomes and consequences whilst trying to live your daily:
Always try to keep a good balance between thinking and letting go and doing – something else. It is excruciatingly difficult but it is the only way – the only focus. Otherwise you tend to veer off towards extremes, like depression or suppression – which is kind of the same thing really.
So again I take a deep breath and go for balance.
If I had chronically ill parents I would pray and recommend others doing so. MN might need something else, at least in the short term. Maybe for the rest of the term.
But what is it? Is it something I can help with?
For the sake of our friendship I will let this question linger much and return to it, and pray for an answer. That way I can use my belief to help him, even if he does not believe in it or can benefit from a similar point-of-view.
The point is, I am convinced by now more than ever, to continually ask ourselves – what is it about our experience of life that we can continually make better and brighter, no matter circumstances and conditions which appear unchangeable? No matter, that life will end?
What is it?
We will have to find out – all over again.
I go home again and snap some more pictures of little toddler Jay for my mom.
There are worse ways to cope with a potentially deadly illness in the family.
… maybe Char and I are robots now. And maybe a day like this is a confused mess, with deep clouds on the horizon still, and objective recognition that you are just not getting anywhere with your business, dreams, goals.
But you have the spark. You have a smiling baby. You have a mom in good spirits. You have the will to accept the crappy work-hours and not whine, except maybe a little when you sit in the bus.
You have these small victories and if you pile them up and focus on them, they look like something.
Fear is an integral part of human life and it doesn’t matter that we are no longer living on the savanna looking over our shoulders all the time for saber tooth tigers. It doesn’t matter if we – as I do – have a more or less comforting spiritual world view and accompanying experiences (or beliefs that we have had certain experiences that confirms this view). It doesn’t matter if we are generally endowed with a very strong psychic condition whether from nature or from training, as certain special troops in the military many have, for example.
Fear is not something you eliminate from life. Even Jesus feared the cross. Joan of Arc feared the fire. We fear all the time.
Fear is not something you eliminate from life. It is something you learn to live with in better and better ways.
And fortunately, it is possible to do so and still have a good life.
We have just been reminded, in our hearts, what we knew in our minds: That my mother can get cancer, like anyone – again.
And the fear that she is somehow ‘especially prone’ to the illness, I suppose.
That new, starker, more resonant fear will not go away anytime soon, only be dimmed by time and need to live. And live well.
I guess we will have to find ways to enhance that need to live well, as an opposition to that fear which can probably never be eradicated, even if my mother is cured this time and never has another sick-day – until the final day.
Opposition or balance in our life experience to the things we cannot change. Or: Light a fire to keep us hopeful in the dark.
Its’s an old truth, but it might as well be lived again.
When dark things do happen to you – loved ones die, illness, separation and much more – one of the first things to remember is to ask for help. It is so easily forgotten, but it is the first best step out of the dark.
Whenever something dark happens in my family or to myself I’ve had a lot of joy out of reading John O’Donohue; joy and strength and wisdom, all bundled. I got his first book – Anam Cara – as a gift from a man I had barely met, right in 2005 some weeks after I had been hospitalized with rampant anxiety. He sent it by snail mail, saying he felt I should have it. One of those small miracles. The book was my strength and you have to read it to understand why.