Remembering a person with dementia

Multiple tv screensAn online friend Kay Bransford recently lost her father to cancer and dementia, and wrote “While my Dad had dementia and some days he was a little less put together, he still resembled his former self, just a little tuned-out.” Whilst I do not know her or her family personally, we have been connected for a long time now, and I have felt their loss.

Her words really resonated with me, and it was a beautiful way to write about her father, rather than focusing on the changes brought on by the symptoms of his dementia. To honour and treasure the man he still was, seems the perfect way to remember him.

Whether we become ‘a little tuned out’ because of dementia, or some other disabling disease or an accident, we will always be our former selves, and it is important we are remembered in this way, and not as a disease or symptom. This is especially so for people with dementia and it is important to see past the disease and overcome the myths and stigmas.

I once had about 12 television screens going inside my head, simultaneously, and all with different activities or thoughts. At any given moment I could tune in or out to one or some, or all of them, allowing myself to operate at a number of levels, and for many years without a diary. Now I’m lucky to get one screen fired up, and to stay ‘tuned in’ long enough to complete thought processes or tasks. I really miss that level of thinking… and hope I will be remembered for the whole person I still am, but can’t always find!

I wrote this a few years ago:

“The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the myths!

And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties.

It is a tragedy that so many just see our deficits.”

It is imperative we all understand the human cost of dementia, and remember those people who have been diagnosed with it, as the people they once were, and, still are.

6 thoughts on “Remembering a person with dementia

  1. As we get further and further into this new world emerging Kate, people will be changing swiftly. It is already well underway and we will be simplifying our lives and respecting others more, our love for our oneness and our sameness will blossom fully and what we see going on today will be a thing of the past. The old world had no compassion for others, it made people sick and took away their lives. No more! We are starting to get our lives back and in the process all humans will be equal , all will be loved and all will be respected and most importantly, cared for!!! In this new world friends matter, they are the essence of the heartbeat just like family. I wish for you and all other PWD that the new world was completed. We will keep pushing hard to get results…Much love….VK

  2. I can understand what you’re saying … but I’ll give you another perspective.

    If you’re a friend of someone with dementia who is slowly becoming a different type of person over the course of, say. 8 years. Well, when the reason for the friendship disappears, so will the friend. If you were friends because you worked together or knitted together, when that reason disappears then maybe the friendship will too. And when your personality changes, so will the friendship – unless it’s a very strong one. In reality, how many friends would want to keep visiting when the person is no longer the same person? Not many ….. maybe only the friendships that are very old, and only if the person has time.

    Now have a look at family … there are some family members that you think of often, call every few months and catch up 2 or 3 times a year. Everyone is busy. Eventually over the passing of time they will start to talk more to your spouse than to you, and then visit fewer times. Then eventually you might see them even less when it’s too confronting for them to see you. (maybe)

    Then eventually when you are in a hospital and totally unaware of others etc, you’ll be lucky to have anybody visit except your spouse and kids (and kids will be less frequent because they’ve got busy lives and you might not find a place in a dementia unit/nursing home that is anywhere near to where they live) …….

    And if anybody has the (mis)fortune of never marrying and having kids, there will be almost no visitors coming to see you if you outlive your parents. If you have a sister, she might come, but brothers are less likely to come visit.

    That’s reality for many people. Of course everyone’s different, but there are some that have nobody to rely on to support them. It’s reality and it sux, so to speak. That’s why I’m in favour of voluntary euthansia. My llife, my choice.

    • In some ways I agree that friendships go by the way side. But in some cases that says more about the friend. I may have dementia but if I have made a friend say in collecting stamps then they stop seeing and talking to me cause of my dementia then that friend is a poor excuse of a friend.
      I may be still able to communicate my passion for stamp collecting. Or I may not have the capacity to communicate that. But having dementia and having worked with dementia sufferers we still know what we enjoy.
      I watched very severe sufferers in the locked dementia wing I worked at still love to get out in the garden and do the weeding and plant new plants.
      They may not have been able to communicate how they wanted but im sure a true friend would still make some sort of effort on their part to keep whatever connection there is alive.
      It’s sad to think that some of my friends would be so shallow. I know dementia can put a strain on friendships but would hope they would still share that common bond in whatever way that may be.

      • As you rightly say Steve, the friends we ‘lose to dementia’ weren’t real friends anyway! I know when I’ve been through other difficult periods in my life, such as a divorce, I lost a few supposed friends along the way. True friends stick by you, no matter what, and my great grandmother was probably right when she said you’ll be one luclky girl if you have more than one handful of those… And, I have made some wonderful new friends since being diagnosed, like you and Sandra, and iOlanda and so many others.

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