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Katie Swaffer a PWD on Dementia
The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 7:16 AM
Joined: 7/24/2015
Posts: 3020


http://kateswaffer.com/dementia/

"Posted 31 May 2012

A few ideas to think about upon a diagnosis of dementia.

Treat the symptoms of dementia as disabilities, rather than a death sentence, as you would if you lost your legs in an accident – you would either get fitted with artificial limbs or a wheelchair, go through rehabilitation, and get on with your life accommodating the disabilities.

Recently I nicknamed my husband BUB, or Back up Brain and we find this terminology far easier to live with than carer. If you think about how you use a back-up on your computer it works the same way. You don’t ask the back-up to do the tasks that the computer does, you only use it when the computer crashes, freezes or needs a reboot. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me, rather than to ‘care’ for me, a very subtle but significant difference. The Scottish Dementia Working Group have a slogan, nothing about me without me. Speak up for what you as a person with dementia wants; don’t let others make decisions for you.

And so it is with my dear husband, who helps me live more fully with the symptoms of dementia. We have learned together to live with dementia, in ways that don’t inhibit or restrict me as a person, and in ways that help to keep our love alive, way above the daily changes and traumas that can also be the living with dementia. He does not take away my dignity and power to do things for myself, but instead assists me from the sidelines, there when I ask for help, or offering help if he sees me stumbling. Offering is also a key word here, as he does not enforce his opinions or help, but rather acts as my back up brain, my hard drive, the one that is fading, but with effort, and sometimes assistance, can still function well. It also empowers me to feel less of a failure, and less guilty about what is happening (failure, only in the sense of having to accept there are so many things I simply cannot do alone anymore). I am the only one on this [my] train [person with dementia] who knows what is going on in my mind. Your imagination is far worse than anything you can actually tell, and your interpretation of what you think is best for me is simply that – your interpretation.

I read a lot and come across what was happening [to me] through text books and online articles and blogs. It is almost exclusively the words of those with dementia that really ring true for me. I’m sure it is the same for the people who love and live with us.

Most of the time at least for now, I hardly need my back-up brain, but it is supportive to know it is there. Although it requires an enormous amount of effort on my part to function, I am happier doing this rather than relinquishing all of my responsibilities. Of course, many people discount this effort, thinking that there is nothing wrong with me; they don’t see my endless notes and other coping mechanisms that I have developed to maintain my dignity. It would seem to me, if you want people to succumb to dementia quicker than they normally would you should think for us, instead of letting us think for ourselves. If you want our brain to stop working then help us to stop using it. So back to BUB and how it helps us. Peter says he find it stops him trying to take over, to know when to act and how. It sounds easy, it is not, but it does set some guidelines in how to behave and handle situations.

Many talk about denial like it is a bad thing but at times we’ve found that some of the time it is a great place to be… you have to face up to the reality, BUT you can only take so much at a time, and you need somewhere to ‘hide’ for a while, for a break. It is a ‘marathon’, but you do need to rest – especially mentally – but also physically – perhaps the need for respite eventually.

As a couple, we need to plan, without my husband trying to control my life too much – It is our struggle as a couple, but it is also my struggle, and my husband is there to support and advocate when I can’t, not to live my life for me. Dementia has changed the sense of ‘us’, in that he is now probably more important to me, sort of like being my lifeline. We don’t know where we are heading but we are going there together.

We use humour, and try to laugh at the ‘symptoms’ of dementia as they come into our lives. We find our attitude is the one very small thing that can make the biggest difference. If you are not happy, then you need to change something.

Groucho Marx once said; I don’t care to belong to a club that accepts people like me as members.

I feel that way about dementia, but as I have no choice, the best way I can survive and live my life is to laugh as much as possible, to ignore the negatives as much as possible, and try to see the funny side of things."


The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 7:22 AM
Joined: 7/24/2015
Posts: 3020


I like that idea, "Back Up Brain" or "BUB" rather than caregiver.

Katie Swaffer is the first PWD I have encountered who, like me, is keeping doing all her tasks...and only having, and only when needed, assistance in doing them. Towanda Katie!

I like how she says (I say ditto Katie, ditto!):

"Most of the time at least for now, I hardly need my back-up brain, but it is supportive to know it is there. Although it requires an enormous amount of effort on my part to function, I am happier doing this rather than relinquishing all of my responsibilities. Of course, many people discount this effort, thinking that there is nothing wrong with me; they don’t see my endless notes and other coping mechanisms that I have developed to maintain my dignity."

She goes on to say (I say, my sentiments exactly):

" It would seem to me, if you want people to succumb to dementia quicker than they normally would you should think for us, instead of letting us think for ourselves. If you want our brain to stop working then help us to stop using it."






llee08032
Posted: Tuesday, August 25, 2015 7:33 AM
Joined: 5/20/2014
Posts: 4405


She is a gem! It's pretty remarkable that she earned doctorate in dementia as a PWD!
Someone like Kate is needed here in the states.