Summary

Here Philip explores some of the changes that occurred in his Mum following her dementia diagnosis, his thoughts based on several days when he acted as his Mum’s primary carer and an interpretation of his Mum’s actions that is pivotal to his understanding.

Transcript:

Dementia, such a dreaded word. We all know the consequences, that dementia robs you of the person who has it. And even though Mum’s official cause of death was dementia I am of the opinion that dementia in itself, need not be a death sentence, at least not initially.

It is a change of mindset.

Not that I would have realised this without reading a great book my Wife found me; called “Contented Dementia” by Oliver James. There’s a link in the show notes.

Dementia for Mum started in the Covid-19 lockdown. Prior to that she was moderately out and about socialising; at the Village Hall, the Church, extended family and the WI, though a closure of the local group curtailed that activity.

But suddenly with just four walls to bounce off, no internet and doom-and-gloom on the television she struggled. And of course no visits to and from family members and, aside from a daily walk, total confinement.

And Mum, like me, didn’t like the telephone much.

To cut a long story short, two years after Covid first struck, Mum was officially diagnosed with dementia. It was a devastating blow to us all, but ironically not to Mum.

And having read Mr James’ book I understood why.

And his book was also the reason why I wasn’t scared, at least not in the conventional sense.

Mum was still Mum, but she was also different.

She still loved us, loved Dad and I think she knew that we all loved her. She still had an appetite for life. But the rules had changed and I, my Sister and Dad – especially Dad – had better figure them out pretty darned quick or she was going to leave us behind.

An example being a post-Covid mini-break coach trip to the seaside, for Mum and Dad.

Mum, at seemingly every opportunity, would wander off. It’s been a long time since I read the book, and I have since passed it on to a colleague in similar circumstances, but I do know there was no malicious intent in her actions.

It’s was though her sense of time is all compacted into a stream of “now”. The concept of “wait here five minutes” no longer computed. Mum saw something that looked interesting so she went off to investigate, and that lead to something else that looked interesting, and so on. As a consequence it meant my Dad would be chasing all over the place trying to find her, until not knowing what to do he’d return back to the original spot only to find Mum quietly sat waiting. “Where did you go?” he asked. To which he got the exasperating answer that she’d been there all the time, waiting for him.

The whole mini-break was like this. Whether that was exploring the B&B or further afield. Very exasperating for Dad, who was not always known for having patience but so exciting for Mum.

When they got back and I visited I asked the question; “would you do it again?” I got a firm “No” from Dad and a gleeful “Yes” from Mum. She thought it was a great adventure.

Mum had no idea of the chaos she had caused. She’d gone off exploring, not come to any harm and found her way back again. No damage done.

And if Dad wasn’t so hopeless at technology, and of course we had anticipated Mum’s adventurous spirit, we could have negated all the chaos by simply popping some tracking technology in her pocket.

Looking in from the outside, so to speak, I tried to help Dad as much as I could. I say Dad because Mum was fine. It’s a trait of dementia that the person with it doesn’t for the most part, appreciate any change. I think they’ve lost the facility of retrospection. Time ceases to exist in the conventional sense. When Mum was waiting for her food to cook, in either the microwave or cooker she would stand and wait, watching until the respective timer went “ping” and then come alive again to carry on.

But not always, and that was the crux of the matter. She would stand and wait when she was being watched, but if I went to the other room, secure in the knowledge that she was settled and waiting, she would cheat. I would hear the “ping” of the timer being manually finished and on returning Mum would be expecting her food to be ready to eat.

I never fathomed that one. It was like cheating on a test. You and I know it didn’t prove anything, but to Mum it clearly was a “win”. Even though the “win” had no effect on the rules of thermodynamics.

Which is a long way round to say, you can live with someone who has dementia but you need safeguards in place and considerable patience.

There are other rules, for the carer and anyone who comes into contact with someone who has dementia and they are advised to learn. As the name of Mr James’ book states, it’s about making the person with dementia feel safe, or as he phrases it, contented.

That’s not to say it’s an easy thing to do, and with the onus being on those who don’t have dementia to adapt to a new set of rules it takes a lot of effort. And I’m afraid to say that Dad struggled.

I’m not critical of him, after all it was a tough ask. He’d known Mum for almost all their lives, and even though people do change over time that change is slow and gradual; on both sides. But this change in Mum was as abrupt as it was unwanted.

And outwardly, and in many things she did, Mum didn’t look or act different. When I was there, while my Dad was recovering in hospital, I initially watched Mum like a hawk, but I finally came to realise for the most part that she was managing okay.

Not that we’d have left her to live alone. After all a baby manages okay if it’s occupying a safe environment but all it takes is a discarded battery or bottle of bleach not replaced in a locked cupboard and calamity could easily occur.

Mum wasn’t a baby, and in many respects that presented an even bigger challenge, for unlike a baby she was fully mobile and able to reach cupboards, top shelves, etc. Plus outwardly she looked like her accumulated knowledge and wisdom ought to have prepared her for every everyday scenario, but sadly due to her dementia she would suffer what we might ordinarily call a lapse of concentration. Or her memories might not be available to tell her how to deal with a situation. The result was her putting her nightie in the microwave to dry, or thinking thirty seconds was all it took to defrost and cook her dinner.

So like a baby she had to be watched all the time, not in a critical “I’m going to catch you out” manner, but in case there was a momentary lapse. Then, either affirmative action taken – like when Dad had to rescue her nightie, or me giving a gentle nudge that the microwave meal needed a bit longer.

Yet despite these lapses, I was determined NOT to take away her independence. Initially my offer to make her a cup of tea was met with the rebuke that she was capable. Possibly a defensive measure of some kind. After all, the brain is still not fully understood. And although Mum, like many dementia sufferers, did not appreciate she had dementia, I had noticed that the brain does know that something is not quite right and is trying to make sense of the world.

The answer, especially to the “cup of tea?” question was not to get irritated, but to agree, and point out I was just being attentive. And anyway I was in the wrong. I should never have asked a question in the first place. As Oliver James’ states, Mum may have no concept of the last time she had a cup of tea. Whether she even liked tea. Whether it would mean a trip to the toilet? When was the last time she had a cup of tea? And so on.

Remember the dementia patient lives in the “now” and questions, even the simplest, can cause a measure of consternation. Far better to say, “I’m going to put the kettle on for a cup of tea”. That’s action in the affirmative without being problematic and as is so often the case, Mum would follow me through to the kitchen and make herself a cup of tea, or just drink some water. Either way it helped her stay hydrated.

I’m not a parent but having made the connection that caring for Mum must be similar to looking after a baby I take my hat off to every successful parent. The pressure of responsibility is immense. And although there is more than enough literature, podcasts, YouTube video’s as well as accumulated wisdom through friends and family to stuff you so full of “do’s” and “don’ts” to make your head spin it still boils down to you and the person in your care, be they eighty-six years or eighty-six minutes old.

In the years Mum had dementia, be it while Dad, my Sister or I was watching over her she would watch endless repeats of the Last Of The Summer Wine. It was a regular fixture of our family viewing during our childhood in the seventies and Mum never missed a re-run, even to the extent of watching the same episode several nights running. The regularity and absence of anything else drove my Dad and Sister nuts but I accepted it for what it was, it reminded Mum of a time when we were all together, as a family unit, before my Sister and I left home. It obviously gave her great joy to either re-live those times, or possibly re-imagine this was those times. So much so that none of us wanted to deny her the opportunity to feel happy and contented.

Shownote Links

• Oliver James, called “Contented Dementia”