Married to Alzheimer’s: Companionship begins to fade as Tony’s Alzheimer’s progresses

Tony and I live on the edge of the south Pennines. I love walking and it is perfect walking territory. Across the main road and ten minutes slog up the first hill, the dogs and I are out on to the tops. Blissful freedom.

We can walk for miles and barely see another person. Up there in all that glorious space, worries and irritations fall into perspective and my spirit is refreshed.

We are not far from Howarth – Bronte country. So far though I have yet to see a handsome, dark stranger running towards me, calling my name.

The closest I have come to that experience is a bog-filthy Springer spaniel leaping on me in an expression of joy and delight.

Solitary experience
Tony has never been a great walker so for me, this is, apart from the dogs, a solitary experience.

As Tony’s Alzheimer’s progresses, my walks have become therapeutic as well as pleasure. I really do need to be away from him for a while to recover some sense of equilibrium and self.

It is a coping strategy and I return home in a far calmer state of mind. That is helpful for both of us.

To be honest, I think Tony also enjoys having the house to himself. He can sit and read, or just doze without the chaos of daily life around him.

He was not always quite so sedentary. When we lived in Ireland one of our favourite jaunts was to the beach at Rossnowlagh. We particularly loved it in the winter when the silver sky met the roaring, silver ocean and it was almost impossible to locate the horizon.

We would walk arm in arm along the beach, mutually supportive with the dogs trailing behind, struggling not to be blown about by the fierce wind.

Finbar, our cat, would be tucked into the front of Tony’s coat.

Apart from extreme indolence, Finbar’s other great character traits were his adoration of Tony and his apparent enjoyment of walks down the beach – as long as he was warmly ensconced in Tony’s fleece.

More often than not we would break our journey home at Creevy Pier to warm up, and they also served the best Guinness ever.

Companionship is one of the things that begins to fade as Alzheimer’s’s progresses. Conversation becomes increasingly difficult as Tony forgets what we are talking about, or that we have just discussed a particular topic.

He is also much less willing to leave the house.

Leaving rituals
He has developed elaborate and lengthy house leaving rituals in an effort to delay the moment of departure.

Once out of the house he is fine. It is the physical and increasingly emotional effort of going out that is the problem.

A further developing issue for Tony is language. When I first noticed some time ago that he did not appear to hear me, I thought he might be going deaf.

Our GP checked his hearing and there were no problems. I think now it is a computing glitch. It is taking longer for him to make sense of the sounds he is hearing and turn them into words.

It is easier for him if I am looking directly at him, so he can also see my face and pick up other cues.

Sometimes, it is like Chinese whispers; what he repeats back to me bears absolutely no resemblance to what I have just said.

One of our long-time shared interests is films. We have always loved going to the cinema. Tony’s verbal confusion is now making this more difficult and frustrating for him.

An inability to catch or interpret what is being said sometimes means he can, quite literally, lose the plot.

I know the day is not too far away when it will not be worthwhile for Tony, or fair to expect him, to continue watching films together.

Another sad loss and further adjustment to the reality of Alzheimer’s.

Not all doom and gloom
However, our life is far from being all doom and gloom. Tony and I still have much to look forward to. One of our sons is getting married in Brittany this summer. Even though Tony keeps forgetting the exact date, the anticipated pleasure is firmly lodged in his mind.

Being Tony, one of the joys will involve being surrounded by a gaggle of women not only organising a country wedding, but also fussing around him. He still adores the attention of women.

And, of course, we will be in Ireland at the end of this month where we will have the continuing pleasure of meeting up with old friends and returning to a country we both love.

We are also delighted to be going to the Irish Hospice Foundation conference in Limerick. We hope to meet new and interesting people.

Please come and talk to us. We are sociable creatures and always keen to hear another point of view, even if we do not necessarily agree with i t.

Steph Booth speaks at The Irish Hospice Foundation's one day seminar entitled Palliative Care Needs of People with Dementia - building Capacity at the Pavilion, University of Limerick on March 26th.

Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease.