Routines in dementia

When I was diagnosed as having early onset Lewy body dementia, my consultant told me to do a few things to help get through the day, and also keep the brain active.

One of these was to set up a daily routine.

This takes in most things I do, from getting out of bed on a morning, until I go to bed at night.
It also takes in medication, although my wife sets this all up in a box, on a weekly basis, but still somehow manage to miss the occassional dose. 

These routines not only help us, but also relieve the pressure on our carers and family members, as it allows us to get on with our chores on our own. This also allows our carers to get on with other things without having to check whether we have done things for ourselves.

However there are pitfalls in this, if I am away from home, in a hotel, or staying with the family as some of this changes.

Things also go wrong if something like the door bell or telephone ring, then I forget where I got to, which can be stressful at times
One day I went to have a shave, and someone telephoned our home so I had to answer as my wife was busy.

It was a few hours later when we were out shopping that I realised that I had shaved one side of my face, and missed the other when the telephone rang. That felt very embarrassing and I felt I had to get back home to shave the other side, even though my wife said that it was not as obvious as it felt.

But these things happen when you have this illness.

This has all been made much worse now, as I have extra things to take on board as I have problems with my hip and knee. 

I now have to do exercises, which takes around half an hour to deal with and this gets stressful.

The reason being that it has to be done in stages, counting up to five, ten times at each stage.

But the slightest noise, I forget where I am. 

This is the joy of living with this illness, and it proves that nothing is as easy as it seems.

But we have to keep trying, because we want to retain our freedom for as long as we can

An active brain fights to remain active and alive.

Comments

  1. Dear Ken,

    I found your article "Routines in dementia" of the other day both inspiring and enlightening as it provides an invaluable and matter-of-fact personal account of the everyday struggles of living with dementia.
    With your permission, I would like to translate this post into Italian and publish it on the blog of my association, Novilunio ( www.novilunio.net).
    I thank you for your great job as a blogger and look forward to your reply at your earliest convenience.
    Kind regards,

    Eloisa

    ReplyDelete
  2. Dear Ken,
    Thank you for your quick and kind reply.

    There is still a lot of work to do to overcome the shame and prejudice attached to dementia. This is why I think that the commendable work that you and other advocates with dementia are doing is the only way to effectively fight discrimination and cultivate dignity and respect for the millions of individuals suffering from this illness. Your voice is THE voice providing the much needed insider's expertise.

    I wish more people not living with dementia - including physicians, academic researchers, and policy-makers - paid more attention to your perspective and appreciate how much there is still to learn about the lived experience of dementia. You pay for the price of such ignorance, and this is the real shame.

    At the cost of sounding too sentimental, you and your fellow ambassadors/advocates are my heroes and mentors.
    All the best,

    Eloisa

    ReplyDelete

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I always say that we may have this illness, but we are all so different.

This is my own daily problems, but I would gladly share anyone elses, if they send them in,

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