His love will never fade

MY name is Clyde Woods; I am 87 years old. My wife is Dawn. She is 89.

We had a good retirement. Dawn had her own car and went shopping two days a week with her girlfriend while I played golf and potted around in our garden. We also worked as volunteers for the local community health centre two days a week. I drove a bus while Dawn was the jockey, helping elderly passengers. It was a good life!

Much of this came to an end when Dawn developed osteoarthritis in both hips - which later led to her being wheelchair bound. Still life went on.

It started with little things. Dawn would occasionally forget old friends' names. She might forget a word she wanted, crosswords weren't always completed, car keys were lost. Nothing big, nothing worrying. We would laugh and tell ourselves we were getting old and what did we expect?

This went on for months but we noticed other small changes. Dawn stopped doing crosswords altogether, shopping trips became one day a week, her meals weren't always up to her usual high standards.

It was an insidious thing. I couldn't pick the day, week or month that things got worse.

One of the things that worried me most was the effect this memory loss and confusion might have on Dawn's driving skills. I had never been a passenger in her car but decided to do so. I was horrified: she changed lanes at will, broke the speed limit and drove almost erratically. I decided she was no longer safe to drive. But she would not give it up.

VicRoads cancelled her licence; but she still would not give up - so I sold her car.

We could no longer laugh. Or put it down to old age. So we went back to see our GP. He did some simple memory tests and suggested it might be the beginning of dementia. He referred us to a specialist.

It was a total shock, although Dawn didn't take it as badly as I did.

First we changed our wills. We had both been nominated as executors. That had to change. Then we made sure our Power of Attorney papers were up to date.

Then we sought information on dementia. We went to Alzheimer's Australia and got handouts, books (The 36 Hour Day is our dementia bible), DVDs and advice. The internet was drained for information. We learned about the four stages of dementia, the behavioural problems and what we might expect if the diagnosis was correct.

Then we met the specialist. I was amazed as to how far down the track Dawn had gone.

She had no answers to the simplest of questions - name, age, address, year. So Alzheimer's was confirmed. I was told there is no treatment, no cure, but it could take many years to destroy the mind. To quote President Roosevelt "1st June 2009 was our day of infamy".

The dementia moved along at a snail's pace. Days, weeks, months, and years passed with Dawn's cognitive abilities steadily deteriorating. You had to look back to see the changes; I kept a diary. I could see the first time Dawn was incontinent (now a regular thing), when she could no longer follow a plot on TV or read a book, or hold a conversation, or have to be fed, showered, dressed or do virtually anything.

She would now sleep up to 15 hours a day and was no longer my wife but a four-year-old precocious child, easy to irritate, quick to anger and equally quick to forget and be loving again.

So how did I cope?

Initially I got two hours a week respite to do my shopping and pay my bills. My choice; I could get more respite but Dawn panicked if I as much as left the room, so I didn't like to leave her for too long. I could mostly cope with the practical things - with Dawn's physical needs (such as dressing, showering, feeding, incontinence), but sometimes it was the behavioural problems that caused most strain.

From after tea until often the early hours of the morning, Dawn would begin to chat her mantra, "please help me", "take me home" and "where's mum?" (She thinks she's still alive).

This mantra was directed at me and made pleasant TV watching impossible. It was dreaded sundowner syndrome. It was possible to divert her attention by pretending to ring for a taxi and waiting on the footpath for the taxi until she got bored and wanted to go inside again.

Alternatively, I pretended to ring her parents (who were 'waiting' for her). I'd tell her there was no answer and that I wouldn't take her to an empty house. Or I'd drive around the street in the dark looking for 'home' - we wouldn't find it so back we'd go. Sometimes I'd tell her I'd take her home 'later' and hope she forgot.

Sometimes these would work, sometimes they didn't. It was all trial and error, crisis by crisis.

It was a rollercoaster ride. There were rewards when the 'real' Dawn emerged and frustrations when she didn't.

It wasn't long before I was thinking, "when should Dawn be in a nursing home?". Relatives, friends and medical people would tell me "now". I would say there is no need to make a decision. It will be when there is no other option. I knew the time was not far off, but decided to keep going as long as I could, thinking "I still love her and want to keep her at home with me".

Eventually the decision was made for me, and Dawn needed more help than I could give her.

Her dementia had reached the stage were she could no longer follow simple instructions. Her leg muscles had atrophied to the extent that she could no longer stand, holding onto a rail, while I changed or dressed her. She would just sink to the carpet and I could no longer pick her up.

It was with a heavy heart that I rang the nursing home.

Luckily during our volunteering days we had been advocates for nursing homes and had no doubt which would be the best if it ever came to that. This was the Spurway Community nursing home in Murrumbeena. It was only five minutes away and had all the features we considered desirable.

By the time Dawn was admitted, dementia had robbed her of even knowing where she was. So she settled in very quickly. The staff (I called them the League of Nations) were friendly and professional.

I now visit her every day at 3pm. The staff tell me that whenever a tall man enters her room, she asks "is that him?".

When I go in I say "yes, that's him" and although she doesn't know that I am her husband she gives me a kiss, a smile and a big hello.

I walk her around the grounds for about one and a half hours and she is quite happy. She doesn't like me leaving but I tell her I'll be back soon. She is being well looked after and that is my consolation.

And what about me?

My first reaction was a deep sense of loss and purpose. For over 10 years Dawn had been my raison d'etre and now I had nothing.

Sure, I saw her every day, but they were long nights. I found I couldn't stay in our bed as I would 'patpat' as I often did to assure her I was there. So I moved into our spare room with a single bed. I am still finding it hard to cook for one and have a freezer full of leftovers.

After a while I realised I would have to get a life for myself.

Now I was no longer a fulltime carer I had at least the mornings free. So I joined the local Probus club. The first time I went on a one-day outing I felt so guilty as I hadn't missed a day seeing Dawn since she entered the nursing home.

However, the next day when I went to see her she hadn't even remembered I hadn't been. The nurses tell me her short term memory has gone altogether and she remembers nothing of the recent past. Since then I have been away a few times with the club and am quite enjoying it.

But Dawn is still my priority so I am not yet ready for long overnighters - but I will get there.

Just recently I have had a mild stroke and am not allowed to drive for a few weeks. That hasn't stopped me. I have hired a mobility scooter and still turn up every day at 3pm.

I have been asked why I bother if she doesn't even know or remember me. I reply, "It's simple. I remember her and inside that head and body is the woman I still love."

I told her I would never leave or abandon her - and I never will.