Because Tony has Alzheimer’s, it shocks people that he smokes

Tissues. Who would imagine such a flimsy paper product would be the source of so much frustration and ire? The big problems I can deal with, but I cannot take much more of the tissue issue. It may well be the thing that finally sends me over the edge.

Tony has become utterly obsessed with filling his pockets with tissues. He uses a toilet roll a day, plus innumerable amounts from the boxes of tissues I place around the house in a sustained, but hopeless effort to stop him going through so much toilet tissue.

I have absolutely no idea why I am so exercised. I have not done the sums, but my poor brain has decided it would be far more economical for him to use tissues from the box. I prevented Tony from pocketing yards of kitchen roll. My major tantrum and his sore nose from using rougher paper brought resolution to that issue, but toilet roll remains an intractable problem.

The woman on the supermarket checkout, who I now know well enough to say hello to, asked if we had an outbreak of dysentery in our house. I buy more toilet roll than anyone she serves . . .

We go through the equivalent of several trees a week.

As I empty Tony’s pockets for the washing machine, I create a small heap. Despite my best efforts, a tissue will occasionally sneakily make its way into the machine. Oh, Lord, how much does that infuriate me? Interestingly however, the one time I forgot to check the pocket on Tony’s shirt and washed an almost full packet of cigarettes (the mess was unbelievable) had a big impact on him. He no longer risks leaving cigarettes in his pocket.

Slightly shocked

Given the very poor state of his health, people are always slightly shocked that Tony still smokes. I really cannot see the point of putting him through the agonies of withdrawal from an addiction he has lived with for more than 70 years. He smokes perhaps two or three cigarettes a day now – he much prefers sleeping in the armchair to braving the elements at the back door where he smokes.

Around the beginning of the millennium, I seemed to spend a lot of time falling over. I broke my left leg badly and then I broke the right one. The coup de grace was a fractured skull.

Having a pacemaker has, touch wood, solved the problem. I am on my second now and remain a regular visitor to the Manchester Heart Centre for check-ups.

As soon as Tony knew I needed a pacemaker, he stopped smoking in the house and anywhere around me. He does grumble if it is raining, or cold outside, but he was upset and frightened by my diagnosis. Initially, I was also thrown off kilter, but life is for the living – this ain’t no dress rehearsal, as our local priest is wont to say.

I like Fr Seamus, who enjoys ceilidhs and is from a farm near Sligo. He is supportive and kind. His deadpan humour makes me laugh.

It was at the hospital in Sligo that Tony’s first, tentative diagnosis of Alzheimer’s was made. The psychologist there was made of stern stuff, managing to cope with Tony’s default position when worried of telling stories. Anything to avoid facing reality.

Nearest town

Sligo was our nearest big town when we lived in Ireland. I loved the small department store on the main street and the very dapper gentleman who owned it. I bought winter pyjamas and a warm coat in there. I still have them.

Tony’s favourite place was a pub on the same street, not far from the store. I cannot recall its name, but it had wooden floors, booths with bench seats and a dusty pot-bellied stove.

His reward for shopping with me was the Irish stew and soda bread they served at lunch time. Unfortunately, the pub closed before we left Ireland. Such a shame.

Tony suggested to me recently that we have a holiday in Ireland, but I am not certain he is well enough to make the trip. Given the state of his heart, he cannot fly and it is a long way to drive. Tony became unwell during Christmas just gone. By the end of the year the doctor told me she was not convinced he would make it through the weekend.

We had reached the point where Tony’s refusal to take medication was having a serious impact. His lungs were beginning to fill with liquid and his heart rate was fast and erratic. He could barely stagger from the bedroom to the bathroom without collapsing. He was ill enough to be persuaded to take the most urgent medication.

Formidable lifeforce

The drugs and his formidable lifeforce pulled my husband through. It is hard to believe how ill he was just a few short weeks ago.

Again, Tony’s Alzheimer’s had confronted me with that impossible dilemma of his autonomy.

How much autonomy does a person with dementia have? Do they have any? Do we have the right to remove it, making all decisions for them? Can we use physical force, as with Tony’s refusal to take what is ultimately, if not lifesaving, then life-prolonging medication? Such action would go against everything I believe.

But what is more important – my conscience, or Tony’s life? How do we deal with the moral and ethical consequences of the decision we make?

The bottom line is, I have absolutely no idea.