A few years ago he had one leg removed due to poor circulation, but he has never complained, not once, except to report that he finds it tricky pulling up his trousers etc. when getting up off the toilet: balancing on one leg (he gets around in a wheelchair; never opted for an artificial leg), holding onto a handrail with one hand while struggling with the other to cope with clothing that falls down one side as he is pulling up the other. (We are experimenting with various elasticised options.)

However, while the above information sets the scene, it is not why I am writing this piece. I am writing this because Rex has been diagnosed with vascular dementia and Alzheimer’s. This has been getting steadily worse for a number of years.

In my 20s I worked with elderly and mentally ill people in the role of care assistant/auxiliary nurse and during that time I looked after many people with some form of dementia or Alzheimer’s. And even currently I have friends who have elderly relatives ‘suffering’ with the condition or disease, and hear about how tough it is for all concerned; not just for the one with it. But with Rex, it just isn’t like that:

When Ivy died, we were able to take Rex up to the hospital to be with her, and he sat by her side all day, holding her hand (after she had gone). The concern for us at the time was that Rex would not remember anything about it the next day, and we would be faced with the decision as whether or not tell him, everyday, perhaps several times a day that his wife had passed away; causing him to re-live the pain as if for the first time over and over. Our one chance of avoiding this was to make the day as long and (sensitively) memorable as possible.

Rex sat there from 11.00am until 5.30pm, with various members of the family popping in and out of the room all day. Eventually it was time and we took Rex home, but once there we quickly moved some of Ivy’s belongings and the nursing equipment out of the room. We did not want to eradicate all record of her, but we also did not want Rex to wake up the next morning, see everything looked the same as it always did and assume he had had a bad dream.

The next day he was sad. And in the afternoon he turned to Sally and said simply “Ivy’s died!”. He had remembered. But when we asked him (nicely) if he could remember being with her all day, he replied that he thought he could remember something but was not sure what. This was the case for a few days, with Rex occasionally getting upset about losing her, but he could no longer remember when it happened. All he knew was that she was gone.

Roll forward several months and contrary to our expectation, that Rex would give up and would probably not live long if Ivy went first, he is now better than ever. But not in the way that one might expect:

Rex’s short term memory is possibly only a few minutes now. Each evening we visit him on our way home, and we invariably have exactly the same conversations each and every day. But with Sally’s sister living only next door, and the block of flats is warden assisted, and carers go in four times each day to check on him and make him a cup of tea etc. and we visit every evening after work, he is well cared for. So there really isn’t much he needs. Every morning the carer arrives early to find him already washed, shaved and dressed, including a smart shirt and tie with tiepin. He then spends most of the day in a reclining armchair looking out of the large window that overlooks the street.

To the point of this page (finally):

The other week Rex said “I must be in my 60s by now aren’t I?”, to which we replied that the following week he would be 87! “Will I really?!” he tutted. “Well I never!”.

I wanted to see how he felt about everything, so I then asked Rex if he wanted to live to be 100, to which he replied softly “I don’t mind if I do and I don’t mind if I don’t. I’m very comfortable and don’t want anything; so I don’t mind either way really!”

And this is the point of this page: Rex (to me) is ‘living in the moment’. He is at peace and comfortable. He enjoys what he does, even if it is very little. He is constantly and repeatedly amazed by the fish in the little fish tank we set up for him recently. He loves watching nature programs, he loves going out for coffee, and he loves just simply sitting and watching what is going on outside. He has no problems and no worries, and would not remember them for more than a few seconds even if he had some. I feel we are extremely fortunate that Rex has this form of the disease, as there are so many forms which can make the person difficult to spend time with. But Rex is a real pleasure to sit with. He will talk happily about anything that arises, but while he can recall what he did many years ago, when asked, even this is more of a distant memory for him. But his intelligence and curiosity is intact. He quickly became used to referring to the notice board I put next to him telling him who comes in to see him and when. And the digital clock on the wall tells him what day and time it is. And he has cards next to his bed (that he made himself with no reference to anyone else) that tell him not to get dressed on certain days as he has a shower...

To me, all that is missing is for Rex to give instructions to others as how they should live in the moment and what it is to be in that state, and he would be a true guru. But then again, he is so much at peace, so in the moment, I don’t think he would wish to tell, nor try to teach anybody anything anyway. That is not Rex’s way anyway (never was)...

Of course, teaching is ultimately for the benefit of the teacher anyway, no one else. And Rex is content to simply ‘be’.

Rex paused for a moment, and then replied, "At least 13!"

 Still in the moment. Still totally at peace, with no concerns or worries.

We noticed he wasn't drinking enough. He would leave his cup of tea for a while, perhaps falling asleep before even tasting it, and then when he would try it, it would be cold.  And this would be repeated with each cup of tea he would be given. And being at home on his own for much of the time, with no one present to prompt him to drink, he would not.

And this potentially serious issue was addressed simply with an item of modern day technology: specifically, an electric heated coaster, that maintains his tea to a constant 55 °.  Now regardless of how long he leaves his tea, it's always at the right temperature for him.