Am I really ok?

Hello there! It has been quite a while since I contributed to my own blog and website, and I feel like I’ve missed out on some great conversations. The one thing I love about feedback is that we get to hear about different views on topics, and even if we don’t agree with each other, we all have a lot in common.

Last week I presented at a webinar on the topic “Reframing Dementia as a disAbility“, hosted by Alzheimer’s London in Canada, and the image I’ve used here today is from one of the slides.

The night before, I had been having a discussion with my B.U.B. about being ok (or not). We often ask each other if we are ok, and usually say something like, ‘yes, all things considered.’ However, the reality is that we are not really ok at all, and both would like our pre-dementia lives back!

We are making the best of a truly life changing, sometimes very difficult and sad terminal diagnosis, wearing our ‘being as brave, optimistic and resilient as we possibly can be’ hats on! He wrote to me he day after, saying

“What has happened to you and is happening every day is not Ok, and I have pretended for a long time that we were Ok.”

Peter Watt 2021

We are mostly ok, except that we live with a dark cloud every single second of every day, and although the denial bubble is useful, it is not always easy to retreat into.

Dementia stole many of my (our) dreams.

Kate Swaffer 2021

What we really need now is for well-meaning others to stop taking what is left of our dreams, and instead support us to continue living as positively as possible, following our own dreams.

Ps. You are invited to the Dementia Alliance International 7th birthday celebration Cafe this week!

14 thoughts on “Am I really ok?

  1. You are a brave lass, Kate. Thank you for sharing your honest thoughts. I can’t imagine what you go through but I sometimes feel like I am heading down the dementia path. It is soul destroying to see my beautiful soul mate, best friend and husband being lost in the wilds of dementia. he was such an intelligent, caring person, and I’m sure all is still present but locked in his brain. He was diagnosed with Alzheimer’s in 2003 and, fortunately, it has been a slow progression but he has now lost his ability to speak. He has been in residential care for four and a half years now and had already lost so much of his speech on admission. We communicate by eye contact but more by touch, holding hands. It has been so hard with covid restrictions, it’s like I have lost a part of myself not being able to see him when they are in lockdown. I say I’m ok but inside I’m not really but I try to focus on the positive issues of each day, it may be a walk in the garden, admiring the flowers, or a cheery greeting from a passing stranger, just the little things like that that make it ok.
    Thank you for who you are and all you do and for the other brave people sharing their thoughts. x

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  2. Thanks for being brave and honest about how Peter and you feel about living with dementia. While we tried to live our best and be as positive as we can amid our declining condition, others might think that we have it easy or romanticising this whole dementia condition. It is emotionally draining to live.

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  3. Thanks for this, Kate! Means a lot to me as this fight for people living with Dementia just got alot more fierce! Alzheimers Dementia Namibia (ADN) was founded by my dad in 2010. He dedicated the last 11 years to fight endlessly for people living with Dementia, and I joined him exactly 3 years ago.

    I recall our ADI Zoom meeting in 2019 where you also joined 😉 My dad is working in the rural areas whilst I manage our Care Home and together we are pioneers in creating awareness and educate while trying to breakdown the stigma and discrimination of PLWD. And then November 2020 my dad was diagnosed with Dementia himself.

    We as family made it very clear that we will support him by any means and ways so that he can still carry on with the important work that he is doing. He is an activist now for now only people living with Dementia, but as someone now living with Dementia. This has taken ADN to a whole ‘nother level, and for us as family.

    Some people don’t believe his diagnosis… others started “praying”. My dad said not to pray for him, but to “pray” by means of helping him to remember through stories, creating good feelings, photos, music; to support him so he can still have a good quality of life by getting to know more about Dementia…

    People find it very ironic that this person who dedicated his last 11 years for PLWD, now is in the boat. But he is also still human he says, what makes him better than someone else.. he’s got a brain…

    So for people like you and my dad and my Care Home Dementia family, I also will never stop fighting.

    Take care, Kate!

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  4. Thanks for your honesty in this post, Kate, and for your courage. These qualities are contagious and the spread is making a difference to the conversation globally. I enjoyed your presentation last week and am walking alongside you on the journey to see dementia recognized as a disability, where rehabilitation to live a good life despite dementia becomes the norm. There are so many more like me, imagine us there, supporting your efforts. You are not alone, whether you are ok or not. Take care.

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    • Thank you Carolyn, your kind words mean a lot to make, and will definitely make the tough days easier to bear. It’s also good to know there an emerging groundswell for dementia as a disability, and all of the rights that go with it. Stay safe and take care too x

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  5. Yes, we are not all okay. I have begun to see the signs in myself. I am alone. These are our lives ❤

    You are an inspiration Kate, just by being. No need to DO anything really ❤ #justsaying

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  6. Great blog Kate, was thinking while I was out working how, after I was diagnosed and for a time there was many people, then they all went on with their lives, as they should, but I didn’t have a life I got to go back to. People look at how well we are doing with out thinking about all we carry.

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