A Journey with Alzheimer’s Dementia

7 MINUTE READ

from Luke’s Journal 2020 | Ageing Gracefully | Vol.25 No.3

Let’s face it. When it comes to our nearest and dearest, sometimes dedication to our professional lives is not in their best interests. How true are the reflections of long ago, ‘the painter’s house is the one in the street that needs painting’ and ‘It is only the doctor’s children playing in the gutter in the dirt’?

And so, with shame, it took a while before I had one of those ‘strike your forehead’ moments.

The Awakening

It was 2013 and I had recently ceased full time practice at Mudgee in country NSW. I was working 3 days a week at the medical centre in the nearby old gold heritage town of Gulgong. We were living there, with an excellent Iraqi doctor whom I had supervised since his arrival in Australia.

At last there was more time for us both, but things with Anne were changing. I noticed subtle problems: a lack of confidence in tasks easily performed, a loss of interest in affairs generally, a hardening of attitudes and sometimes a coolness or unusual loss of consideration towards others.

Admittedly, we are all prone to similar issues if over-tired, stressed or anxious. And those factors had been there, but I felt they were less now. We could, and did, do more together.

“Not knowing encourages a sea of doubt while the relationship deteriorates and little events are magnified with recriminations and sometimes anger.”

I wonder if others ponder whether it is better not to know. This is, of course, essentially selfish, as having the diagnosis is essential to making adjustments to the inevitability of life from now. Not knowing encourages a sea of doubt while the relationship deteriorates and little events are magnified with recriminations and sometimes anger.

The pressure must be unbearable on someone, to struggle with the awareness of loss of memory and a lack of awareness from those around .

Col 3:13 comes to mind. “Bear with each other whatever grievances you may have against one another. Forgive as the Lord forgave you”.

The Reality

A number of physical issues meant trips to Anne’s GP, a 200 km round trip. It is hard in country towns to see the doctor who may live all but next door. A wider delve into the whole picture led to the psycho-geriatric diagnosis and suspicions confirmed.

The need for lifestyle change was with us. A move to retirement from active practice became inevitable, to be closer to family and plan stimulating activities where there were good supports.

The Lake Macquarie, Newcastle area fitted perfectly with excellent medical facilities, an active ‘University of Third Age’ (Anne signed up for almost daily courses!), various church denominations and a wonderful CMDFA group, which gave us those precious three years before deterioration set in.

Anne had travelled widely prior to our move and we tended to confine ourselves to local visits, only occasionally interstate. One cherished break in Norfolk Island involved flying internationally with NZ Airlines. Losing her within the terminal half an hour before boarding was a near disaster but she had found her way to the right gate and queue, leaving me the shaken one.

How that slow loss of ability creeps up and saps the very essence of an extremely capable person. It is then so easy to try to help by taking over, but easy too to start to resent the extra time you have to spend, to ignore one’s mounting exhaustion and shorter fuse – how very human we are!

Since then life has become more confining. Car trips are a welcome change of scenery and source of remembrance. However, leaving her and the keys in the car one chilly day, well after her licence had been handed in, resulted in an escapade involving some very understanding police. When neither she nor the vehicle could be found, and whilst we were all debating the next step at our home, she swept in, innocently unaware of the concerns, and parked the vehicle perfectly well in the garage. Some activities are better retained than others. More lessons are learnt.

The illness

A million words or more must have been written about dementia in all its disparity – the academic, seeking to unravel the scientific mystery, words of condolence, comfort, compassion, of hope, sitcom laughs at benign expense. Those in the early stages or recently diagnosed have written and spoken searingly of the inevitable agony.

Now that care is beyond our capacity at home, Anne is living in a dementia unit with Covid-19 visiting restrictions.

The Dreaming

I ponder and remember.

Sometimes you seemed so far from me. I see it when you sit immobile, eyes closed yet not asleep, listening, a Mozart concerto playing perhaps, or during a Mass. It is as if you are half-way to heaven and the rest of you longs for that other half. Your face smooths, you radiate a warmth to a world that knows it not, nor is it yet for me your earthly companion.

“ It is as if you are half-way to heaven and the rest of you longs for that other half.”

Just maybe then we can relate to the forlorn cry in the Song of Songs 8:13,14 “You who dwell in the gardens, let me hear your voice” and still know that you long to respond “Come away my lover and be like a gazelle”.

Or these words come to mind as I feel I am losing you:

“Are you a mere picture?
You came to me with the first
ray of dawn.
I lost you with the last gold of evening.
Ever since I am finding you
through the dark.
No, you are no mere picture”.
Rabindranath Tagore. Lover’s Gift. XL11

But you know better and instead extol the words of Henri Nouwen:

“We are not what we do. We are not what we are. We are not what others think of us.

Coming Home is claiming the Truth: I am a beloved child of the loving Creator. We no longer have to beg permission from the world to exist.”

Can we ever enter that inner sanctum that can no longer speak our language? At times I feel you speak without words nor need translation:

“I close my eyes as the world confuses me and I dream dreams that only heaven understands. But They ask questions, sometimes They are out to get me.

Help me – I must resist;

No! let them do their worst, it must not disturb my dream.

Surely though the colours fade, a grey haze surrounds the meaning and the memory is vanishing in the gloom for ever.

Then They are back – do this, do that, we must clean you up, here’s your tea, we want to help you.

But you cannot help because I need to find my dream again and you cannot enter it – I won’t let you; it is all I have got.

So please understand, this is me now.“

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