I didn’t invite Mr Dementia

Following on from all the wonderfully honest #DAI #Hello stories shared during World Alzheimer’s Month or Dementia Awareness Month, which is a term I prefer, as I’ve been advised many times by my neurologist I don’t have Alzheimer’s, I decided a blog updating the changes in my cognitive disabilities was in order.

Sometimes the raw truth is important, as dementia is a moving feast, and really is one very tough gig, regardless of whether we find ways to live positively with it or not!

First of all, my husband Peter has been more worried lately, as there seem to be more changes in many areas than there have been for a while; he sees them before me now. He had acquired the nickname of BUB from me, but since our conference trip to Chicago, he’s now more often know as The Big Tuna! That in itself is another blog!

So, even charades is not working for all the ‘thing-a-me-jigs’ that I’m constantly referring to. Darn!

My emotions are so much more difficult to manage. I’m crying more at things that are not worth crying over. I’m laughing at things that are probably not funny. My ability to ‘negotiate’ the 3 R’s is definitely much more difficult. The back to front me is more pronounced, an ever present uninvited guest. I’m also crying over things worth crying about… These are all normal human responses, even if some have developed dyslexia.

At least 3 monthly, I see my general doctors regularly, and know they always check in with the depression scale! To date, I am not depressed, although last year did need a few sessions with a psychologist to get through being defamed publicly.

And in spite of all the stories people with dementia have shared in September about their own diagnoses, the dementia-doubters continue to abound. In fact, these stories appear to have increased the dementia-doubters.

They too may get dementia one day. Perhaps it is only then they will understand…

20 thoughts on “I didn’t invite Mr Dementia

  1. I found your post truly moving Kate, I work with older people in a care home setting many of whom have a diagnosis of dementia. The moments of unexplained tears are too frequently analysed as being a response to being in a care setting, rather than just moments. Subsequently, because we all must be happy all of the time the prescription pad comes out, and sometimes correctly and some times not anti depressants are prescribed. We all have profound moments of emotion, that is who we all are whether we have a diagnosis of dementia or not, we need more time with people to understand the why though, and whilst we may not be able to change the tears to laughter it is important that we listen. As the quote you gave said ‘if you want to go far, go together’
    Best wishes

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  2. Kate ….. I’m so SO sorry that you’re noticing these changes …. I’m worried that you’re doing too much and also getting pretty stressed. Extra stress is bad for the body – in dementia and non-dementia ways. The solution isn’t necessarily to stop doing anything, but to just do less, maybe even much less, than you’re doing now ….. sending you big big {hugs}!!

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  3. I am perplexed, why would you say you have Dementia when your neurologist says you don’t?? Most of us would be thrilled if our Dr. Told us this. You can still be an advocate if you don’t have the disease.AD is misdiagnosed about 15% of the time

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  4. Thinking of you Kate and sending lots of love-what a worrying time for you-i truly hope and pray its not Alzhiermers and i am sorry to hear that things aren’t going well-take care-lots of love xxxxx PS hope the appointments go well and there are no symptons of Alzhiermers-do people ever have two dementias? Much love xx

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    • Thanks Sam, but the type of dementia is no better or worse than Alzheimer’s. Ps many people have mixed dementia. Some that I know have three types, which complicates it a bit more I suspect. How’s your grandpa? X

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      • That is very true, Kate, and yes you are right-many people have mixed dementia. My Grandpa has gone downhill alot sadly-he doesn’t know who we are or what is happening around-thinks i am his nephew or his child-doesn’t know our names, although strangely one of the only names he knows is his sister-in-laws. Quite amazing how some people with dementia don’t know there immediate families names, yet they know there sister-in-law. He has been in respite care last week but came home today. Unfortunately my Grandma is refusing to get help and is calling him fat again. At least i pampered him last week which was good and she doesn’t know-thankfully. He is starting wandering around the respite place and struggling to follow instructions like moving to another table. He wandered into ladies rooms at respite care. I am finding it very hard-very tragic not knowing who someone is. So difficult.

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      • Thank you so much Kate and it is always so lovely of you to ask about my Grandad-much appreaciated-a yes a very difficult time for all of us indeed

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  5. We need to change people’s perception of how dementia affects different people. Perhaps we need to highlight more the difficulties people living with dementia experience and how they overcome them. Many people would not understand how you, Kate, are able to continue attending university, write daily blogs, author books, travel the world, speak on the public stage, with a dementia diagnosis of some years. Many people with dementia cannot even contemplate doing that, so imagine how sometimes the ‘public’ perceive and doubt the ones who are living well with dementia, and along the way appearing to be managing quite well. I know a number of people I have directed to the various websites are astounded at what some people living with dementia are able to do.

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    • Thanks Gail… your feedback has reminded me I’ve not actually continued to write books, although I do have a contract for a 3rd one on dementia and a 3rd poetry book! Both PENDING! Some days, I don’t know how I showered or got dressed. Which is also why sharing the challenges here is so important. I think I want to suggest to those who are ‘astounded’… stop being astounded. Many more people with dementia have simply decided NOT to go home and quietly die. It really is that simple. 💖

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  6. I’m sorry that you are noticing these slips in your functioning, Kate, though I have to tell you that I believe the fact that you are aware of them is a positive sign in itself. I call it my double edged sword, but I am convinced that all the time we can observe and recognise the slips, we are still functioning “ok”….not well, but “ok”. I have more fear of not knowing when I lose a skill, which is why I am happy to have a friend with a similar professional background to my own, to monitor me (you’re lucky to have your Big Tuna to do this for you), I have to rely on a pschologist who was once one of my best interns.

    You do so much for people with dementia, Kate, and are such an inspiration – maybe it is time for a holiday to re-build your reserves. We all get weary and with all the additional pressure you carry from being a public face, you are at greater risk of burning out. I know it is hard to hear, I hate it when people tell me to slow down, but it is important to recognise that as a dedicated advocate, you are also at risk of ‘carer burrnout’, often recognisable by reduced emotional regulation. Please take care of yourself. ♥️

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  7. It’s always so warming the way you can continue to find strength, despite the doubters and the tremendous work you and BUB are undertaking. Among those of you who are lucky enough to count you as a friend, wherever we are in the world, you set the bar Kate. The doubters may enjoy their sojourn in de Nile, but we can only hope for their sake that their wake-up call does not come by personal experience xx

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