My wish for dementia

screen-shot-2016-09-10-at-9-02-16-am
Every day, either in a quote within a picture, or on an email footer or article about dementia, I see the wish for “A World without Alzheimer’s (or Dementia)”. For World Alzheimer’s Month 2016, please let’s all start being realistic.

Every time I see these quotes, I think to myself, “How ridiculous, especially when we are not even close to a cure”.

After all for all the additional money spent, how many cancers have yet been cured?”

I said on Facebook I would like for us to all start being real about what we wish for, as follows:

Better care
Less stigma
Less discrimination
Less fear
More kindness
Better access to our community
Disability support like everyone else gets
Rehabilitation 
Support to live with dementia and not only die from it

Yes, this is my wish for people all with dementia. To keep even suggesting there will ever be a world without dementia is truly insensitive, and in my humble opinion, rather pointless and stupid.  I really am sick of the fundraising campaigns using it too, as the money for research is not being shared enough with those who want to research for better care.

Two quotes from my post on Facebook about it are worth adding here as well;

ASB: “You’re so right, Kate. An example between a diagnosis of cancer and dementia just happened to me and M. For her cancer diagnosis she got a swag bag from the hospital, 3 ring binders filled with info on the process, cards, flowers, well wishers dropping by, gift cards and food brought in. For my diagnosis of dementia…nothing. Nothing. When I asked for rehab I was told that wasn’t done”.

SJA: Excellent mission statement! while we all want a cure or prevention treatment , priority must be to focus on the here and now.

31 thoughts on “My wish for dementia

  1. That it so true Kate and yes all the things listed MUST be changed. I wished more people had compassion, and empathy for people with Dementia. Thankyou for sharing this n good on you for speaking out!

  2. Pingback: The impact of false hope | Creating life with words: Inspiration, love and truth

  3. I guess we all hope for cures, but in our hearts we know that it will be a very long time before this happens. But I always think of one little word which keeps me going and that is “Hope”. A small word with a big meaning. Although I am now struggling with COPD now on top of memory problems, I keep thinking of that word every day especially when I am feeling ill.
    I guess we all live in hope

    • Sending you love, good wishes, and lots of HOPE Ken, and thanks for continuing with your blog too. I sent on the one about faith to a Chaplain I know, who found it really interesting too. Hugs to you both xx

  4. Diabetes used to be automatically fatal; now it’s simply a disease we live with. Same with AIDS. Why would we assume Dementias are any different?

  5. Pingback: My wish for dementia | george rook

  6. Hi Kate. Every week we hear they have a cure on the horizon but then you will get a person who has reviewed it in the last paragraph saying it is not conclusive. As we are all different how can one drug cure all. It doesn’t happen with cancer they have different drugs for different cancers. I am working hard at living as well as I can with this and I think that is my true aim to live well until I die. However I hope this is a long way a way and if and when I need more help that this is available and not too expensive that they say they can’t afford it. Take care xxxx

  7. Kate, you have written my heart. Yes. Yes. Yes. I’ve been unable to read all of your posts this month so far – you are TOO prolific dahhhhllllinnnnggg! – but I knew from the email teaser I had to read this one IMMEDIATELY. You are 100% absolutely RIGHT. I’m exhausted with “I hate this disease,” Might as well hate life which also ends in a death we don’t choose, and may as well wish the sun to be the moon as to expect a cure in the very near future.

    Let’s not just wish for realistic goals, let’s take action to achieve them.

    Thanks Kate. Love your work. You are a hero.

  8. Your thoughts always resonate with me, Kate, but this piece summarizes so much of what I have felt for years. I feel the same repulsion as I watch the careening chase for a cure to the detriment of those in need NOW. Every wave of “great news” of “game-changing” discoveries makes me ill. I wretch to see the headlines and watch the excitement of those who failed to read and realize the “breakthrough” was in research on WORMS. Richard Taylor was my favorite friend to share our dark humor and abundant sarcasm on the subject. I cried when I read your tribute to him this week. Keep writing – we are out here listening. Blessings on you and your mission!

  9. Any and all of these realistic suggestions can make a big difference to the person who is living with Dementia and to the person who loves the person living with Dementia. Thank you Kate!

    • That is what happened to me, if I had not meet Jytte Lokvig and listening to your pesentations, my life would be very dismal. Having dementia is not about giving up or stopping life, young stage has been for me an openning to live from new perspective, to share with others and live out loud. There is sooooo much more than a doctor telling me or anyone else to go home get my papers in order, that every one with a dx of dementia/alzheimer’s, and caretaker’s, depending on what is going on can have a life filled with love, compassion, laughter and choice. Some of the choices are challenging and I hate them, and, I adjust and move on. More possitive change, like Bill Thomas presents, and many others may be heard helping others to have as full a life as possible.

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s