Today, I hate dementia

/ January 29, 2022
Image source: Kate Swaffer © 2022

My dear late aunt who I miss every minute of every day taught me not to hate anything, but I have taken that to mean people today, not ‘cognitive capacity’ because…

  • I hate not being able to spell any more (I used to get 99.5-100% in spelling tests)
  • I hate not understanding words, and every single bloody day having to use a dictionary for words that I can no longer underastand, especially when ‘I know I know’
  • I hate that I cannot drive. Yes, I cannot even without a licence; I actually tried to in November 2021, as it was an emergency, but had forgotten how to start a bloody car!!!
  • I hate it that I cannot understand how to use a calculator, or do very simple maths any more (I did high level maths at school)
  • I hate that others speak down to me, and patronise me, simply because I have dementia
  • I hate it that people withOUT demenia make all of the decisions about and for me
  • I hate it that researchers, health care professionals, services providers and others refuse to accept, and provide support for dementia being a condition causing #disability, thereby denying EVERYONE with dementia access to the CRPD
  • I hate the gross underestimation of the capacity of peo;el with dementia, ieven in the later stages of the disease

I know I’ll get over it. I have before, and know I have to focus on the many capacities I still have, in spite of needing diability support, but seriously, I miss my high functionung brain!

But today, I HATE HAVING DEMENTIA, and I really miss my cognitive capacity, my photogropahic memory, the members of my ‘blood family’ who have deserted me, and so many other things. Dementia, even if only for one day, can fuck off!

Ps apologies for swearing…

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24 thoughts on “Today, I hate dementia”

  1. Kate, I love that you are so articulate about your experiences with dementia, good for you to get those feelings out of your head and share them with us. It does not change your situation or the progress of dementia, but the mere fact of expressing your feelings perhaps helps to relieve some of those pent up emotions. The other side of that is in that sharing it is helping us to understand what it must be like to be living with dementia for those of us who don’t have it. My husband was 65 in 2003 when he was first diagnosed with dementia. We were best friends as well as husband and wife, a very close bond that allowed us to talk about anything and everything. For years he would not accept he had dementia,- it was a mistake, he was going back to work, etc. It took me some time to realize that when he refused to do things it was because he had lost confidence in managing those skills but refused to talk about it, so over time he withdrew. We still had a good relationship but conversation began to be more limited as time went by. He had been very articulate, intelligent, quick wit, compassionate and wonderful skills in counselling. He gradually lost the ability to understand written word, and eventually language. He has been in care for 5 years now and I still see that caring and loving person he is without his use of words. I would often ask him over the years “a penny for your thoughts?” when he was staring into space, he would just say, “absolutely nothing”. I often wondered how it must have been for him, frustrated and angry at times, if he had been able to articulate those feelings then, I realize he would have still experienced those feelings but perhaps not feeling so isolated in sharing them. I am in awe of you, brave Kate, Warrior Woman, that you are able to do that and to share with all of us, which helps us to more fully understand what you are experiencing, a living education experience, if there is such an expression! And also to fight for those who are not able to. Love always. x

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    • Dear Anne-Marie,

      Thank you so much for your feedback, and I am so sorry for your husbands dementia, and the dreadful toll it has taken on you both. It is a beastly disease, but for me, being diagnosed early, then learning to accept it, has been my furtune.

      Why, you may wonder? It is because when I realised I was denied my basic human rights, and then, as I met more people with dementia, I realised we all were (and still are) being denied our basic human right to equal and universal health coverage, rehabilitation, inclusion and so much more. I felt compelled to be a voice for myself, and others who may not be able to, or may not want to speak up.

      There is so much work to do, and I feel so despondent so much of the time, I want to give up… but that is not ok, and whilst I have a voice, I must continue to use it. Some call that God’s work, others say, wow, you are brave, some days, I think I must be stupid!

      It is the hardest road I have ever taken. Not having dementia, but that of dementia activism.

      If we speak up, we are used for fundraising, until we don’t say what the big advocacy organisations want. Then if we dare to live too positively, we are told we don’t have dementia. I’ve even heard one peer, that someone said to her, they wished she’d hurry up and die, as it looks bad for others who decline faster.

      Oops, I could go on, but this is not meant to be a thesis!!!

      Sending hugs and love to you both xxxx

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  2. Hi Kate,
    Your post resonate with me as my father had dementia and in my work I see so many people who are experiencing the same things as you write about.

    I would like to use this article in a newsletter that I produce for the South Gloucestershire Dementia Action Alliance. It goes out to all our memory cafes members, everyone who have attended one of our dementia awareness courses, who have attended our webinars on communication and dementia as well as our business awareness and demenia.
    I think it will help so many people –

    Please let me know if you agree to this. We do not charge for the newsletter so we do not gain financially from this.

    Kind regards
    Winsome
    Project coordinator for the South Gloucestershire Dementia Action Alliance

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  3. You are an inspiration to me a palliative care CNC working in Aged Care
    I have learnt so much through your blogs
    Sending you a big hug and thank you from the bottom of my heart for sharing your story through your blogs of living with Dementia

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  4. Pingback: Perspective: today, I hate Arthritis! |

  5. Dear Kate. Thank you. I’m a 74-year-old Master’s student at Hull University, UK. Yesterday your, ‘What the hell happened to my brain’, dropped through the letter box. I learnt more of what it must feel like to a person ‘living beyond’ dementia from the first few chapters, than I had from the first eight months of the course. I also know you will feel renewed, if not tomorrow than soon – because that is who you are. God bless.

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  7. Dear Kate. Thank you. I’m a 74-year-old Master’s student at Hull University, UK. Yesterday your, ‘What the hell happened to my brain’, dropped through the letter box. I learnt more of what it must feel like to a person ‘living beyond’ dementia from the first few chapters, than I had from the first eight months of the course. I also know you will feel renewed, if not tomorrow than soon – because that is who you are. God bless.

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  8. Sending you big, long cyber-hugs, my friend! I know everything that you’re feeling, because I feel it too. Hope you’re able to find something that’ll help soothe your soul Hope you’re feeling much better tomorrow …..

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  9. Dear Kate, you are right to hate dementia, it’s an asshole. I can only stress the awe in which so many of us hold you for the light you shine on the path you must follow. I hope for days of greater peace for you and moments when you realise how much you are loved x

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  10. Thanks Kate..for reminding me how hard it is for my husband (he’s 54). Today was a tough day. And I got so frustrated…and then felt so guilty. I hate dementia sooo much

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    • Thanks Robyn, It is so easy to get lost in our own struggles, which is why it is important for people with demetia, and our family or friends supporting us, to all speak up. Ps, I don’t hate it today! xxx

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  12. Hi Kate. What I LOVE about you (and your blogs) is your refreshing honesty and when I think of what you have contributed to the lives of people living with dementia; and to change the attitudes that stigmatise and frighten; and tackling the nasty ideas like BPSD, I have to say that all that is so much more important than whether you can drive or spell. I’m sure you don’t feel like that – but hold on to the wonderful things you have achieved because of your dementia – not just what you could once do before it! You are so precious right now, for who you are not what you were. Sending a big thank you and a big hug

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    • Thanks so much Gaynor, and most times, I agree the importance of driving and spelling is probably overrated! On Saturday, so many bloody #cognitive #disabilities (like them) turned up in close succession after lunch, it overwhelmed me with grief and sadness. Hug received well too xxx

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  13. I’m not sure how to respond to your post Kate, it doesn’t feel appropriate to say I hope tomorrow is a better day but I hope it is. I am sorry for the loss of all the things you have mentioned and I cannot begin to understand your frustration and anger. I am sending love and hugs cheers Ness

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