We have struggled through a pretty hard time in the past month or so, but Tony has now reached a space of greater contentment. His rage and frustration have subsided and the house is now much calmer.
Next month I will be speaking at a conference at the University of Limerick organised by the Irish Hospice Foundation. A promised trip to Ireland was instrumental in relieving our personal situation. Returning to Ireland, though only for a few days, has given Tony something to look forward to.
I know this because it has stuck in his mind and not gone the way of much of the other information passed on and lost on a daily basis.
Unfortunately, we had lost the address of some friends we were particularly keen to meet up with while we were in Ireland. While searching unsuccessfully online for them I came across the blog, A Kilcullen Diary. I telephoned the blogger, Brian Byrne, and asked if he would be willing to help me.
He accepted the mission and, true to his word, phoned back a few days later with their details and we were able to contact them.
Tony has always liked to tell me the stories of William's (our friend) horse-racing triumphs. My husband is a great raconteur as well as being a huge fan of horse racing. He and his late wife, Pat Phoenix, owned race horses.
Given that my knowledge of the turf would easily fit on to the back of a postage stamp, Tony is looking forward to the conversations he and William will share.
The two first met each other decades ago and, while there have been periods when they have not been in regular contact, they have remained friends.
Another "must do" for us is to have supper with our friend, Jimmy Murphy, while we are in Dublin.
Some years ago Tony was in one of his plays, Brothers of the Brush , at the Everyman Theatre in Liverpool.
It is an absorbing and moving play and I think it is one of the last stage productions Tony was in before he retired.
Vivid reality
Tony's past now provides his most vivid reality. His long-term memory allows recollections of family, friends and personal history that are more true and comforting. It is recent events that exist in the hinterlands of his recall.
It is easier and much more fulfilling to bring Tony happiness by enabling him to reconnect with positive aspects of his past than it is to try to introduce new people and events into his present.
The trip to Ireland will supply him with much anticipated opportunities to connect with people he loves and has known a long time. There will be many shared memories.
The initial reason for our trip – the Irish Hospice Foundation conference in Limerick – will look at issues around end-of-life care for dementia sufferers.
The Irish Hospice Foundation is a national voluntary organisation promoting palliative care.
While it has previously undertaken a small number of projects addressing the palliative care needs of people with dementia, it has now embarked on a major three-year national programme.
A crucial part of the project will be to ensure the voice of the person with dementia and their carer is also heard.
This is a very tough area. The questions to be confronted are both practical and moral.
Making choices
Unlike other terminal illnesses such as cancer where the sufferer may still be able, even towards the end, to plan and make choices for their care, that would clearly not be the case for those with dementia.
When is the right moment to have the discussion? Is it even necessary to have the discussion?
Inevitably, as dementia progresses, more and more important and life-changing decisions have to be taken by the carer. This is an enormous responsibility.
Should the carer simply make judgments based on the situation as is? After all, the person with dementia will not be capable of insight into their own needs. Would such a choice by the carer ever be justifiable?
Wise not to judge
Truthfully, the answer is, I do not know. We all have different experiences and expectations and in this incredibly difficult situation it is perhaps wise not to judge.
My own perspective is whatever decision we arrive at, respect is fundamental. Respect for what the person once was. Respect for what we know, in our hearts, they would have wanted.
Dignity, understanding and, above all, love as they journey towards and through that last rite of life – death.
Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer's disease.
