Dementia Diaries #1: acquiring a second wife…

Derek from Wigan has written about his experience of looking after his wife who lives with dementia. Here, he shares reflections of assuming the role of ‘carer’ – while retaining his role as ‘husband’…

I’ve only ever had one marriage, but somehow, I seem to have acquired a second wife, who, believe me, arrived entirely unplanned. I’ve heard claims that babies arrive this way; but two wives?

That was two years ago, and I sometimes wonder: if two wives, could there be three? That would not be welcome, but maybe I should prepare.

Although I still catch fleeting glimpses of my first wife she doesn’t linger. Gradually my new wife is taking over. Thankfully, thus far, she does seem to share some of the lovely nature that my first wife possessed ‘in spades’, which I understand may not always be so with dementia sufferers.   She also possesses a degree of that enviable quality of stoicism, sometimes displayed by those carrying a heavy load. Both these are big plus points.

This doesn’t mean that disruptions and disturbances haven’t occurred since her arrival. They have. It was perhaps only to be expected. She brought with her some rather odd, weird, even shocking behaviours. This did make life rather challenging as we strove to reproduce the satisfying, happy lives we had both previously experienced. Whilst my wife had to contend with the losses ‘gifted’ by her dementia I was grappling with my new wife’s Alice-in-Wonderland world.

Her arrival as wife number two was accompanied by a flood of information, advice and tons of paper from both local and national sources. A sort of dowry, full of good advice and helpful tips, which was much appreciated, leaving me to create my own individual caring plan.

If that early and impressive dowry deluge could have subsequently become an on-going, rather than a stand-alone support, it would have been of greater benefit. But it wasn’t continued. So unsurprisingly perhaps, the creation of such a void can leave Carers feeling isolated, ignored, abandoned and forgotten, being left to ‘paddle his/her own canoe’, as they struggle to deal with their new way of life.

It is acknowledged that, for the nation, dementia presents a major problem. For the individual with dementia it is devastating. For the carer it is a huge challenge. It is a full- time job. You may not be active the whole time – it only seems so – but you need to be available the whole time. It demands the highest level of caring skills, which only increases as the dementia progresses. And yet there is no organised skills training.

Caring skills can be learned and should be taught; even for those with a natural feeling for caring, because caring techniques are essential.

There does seem to be a mismatch between need and provision, with self-help seemingly expected to fill the gap, which is surely inadequate.

For example, my own awareness of the work of Teepa Snow, Alison Wray, even my local dementia Carers group and the helpful writings of fellow- Carers (on the Better Living Dementia website) were all discovered by accident. Only the Alzheimer’s Together magazine was directly brought to my attention. I wonder what I am unaware of because I haven’t discovered it.

Some superb skills training materials are now produced but Carers are often not best placed to avail themselves. They might be overwhelmed by daily problems, emotionally wrought and reluctant to seek help for what is essentially a matter of personal relationships. They might not even know where to seek help. If we could be made aware of what might help us then it might better achieve the goal for which the teaching material was actually produced.

Surely dementia is too serious to be left to chance and self-help.

Skills training materials could be communicated directly to most Carers on an on-going basis by internet and e- mail. If they could also be made available, in an appropriate form to local dementia carers groups, a valuable community commodity, this would greatly enhance effectiveness.

None of this should be difficult to organise and manage as the materials are already available. Neither should it be costly.

Reflecting upon the actual dowry we did receive, however, I’m not sure how much it helped us in the critical short-term. Perhaps I sought the unachievable for my wife. Perhaps it was a matter of too much information too soon and thus overwhelming, lacking a supportive weaning process as we tried to adjust to our new and very different lives. This could have made a difference.