A metaphorical punch in the face…

face-punch-300x208This morning my husband and I discussed a few incidents or D-moments that have taken place the last few weeks, which have really knocked him out of his denial bubble. He has subsequently been a little down in the dumps, as he is forced to face what is ahead.

Thankfully last night he went out with three mates for their monthly movie and dinner night, where they behave like 12 year olds, and it has cheered him up no end. They usually ask for a family pass, mum, dad and the two kids!!! It also means the dark cloud lifts enough for us to talk about it.

When he notices a change due to dementia, a new deficiency or loss, it is rather like being punched in the face, hard enough to break your nose. The damage is not there for others to see, but sits inside his heart like a dark cloud. It is more than confronting, and he said again this morning, “I think you are going along really well and things are not changing that much, until something happens that ‘hits me in the face’!” A couple of weeks ago, I forgot his name, and had to ask a friend who happened to be here at the time. It was distressing for us all, but especially so for my husband.

‘How can it be happening?’, we both wonder, as I do still seem to be coping well, and the deterioration is not showing very much if at all to others when we go out because I can still manage to paddle hard. But the paddling is getting harder, and at home some nights when I am tired and can no longer paddle, my words are very garbled. This is definitely a big change, and it is taking me longer to get my words out even when I can paddle well, but especially when I am tired. I’d have to say it is a little numbing…

Knowing where the PPA is heading is unsettling, to say the least. Finding extra creativity and new friends via blogging doesn’t always make up for the losses, but does help enormously  most of the time. Thank you. As my husband and I face the road ahead, all we can do is live as well as possible, and try to find some meaning in what is happening. Having wonderful friends who are also mentors like Richard Taylor and Shibley Rahman helps a lot too, and being involved in advocacy is how I get through my days with a positive heart.

Advocacy = PERMA

26 thoughts on “A metaphorical punch in the face…

  1. Aren’t those movie nights awesome Kate-something for him to look forward to which he deserves-oh a causing havoc is a perfect start!!!😅😅😅PS They do help you keep going and such fun to particulary after a rough week!👍😊

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  2. New people reading your wonderfully eloquent blog might be surprised to learn of your situation – just because you are so eloquent – but your paddling away under the surface keeps it all going so well. Your experiences and insight must be so important to others who are going through the same thing. Long may you keep writing all this as a lesson to us all. Very best, Vanessa.

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  3. Kate not sure how I got here but so glad I did I too am having more D MOMENTS yes friends say do less you are advocating too much but we do what is good for us at the time and it is ever changing keep talking and blogging of these moments it’s good to tell it as it is no we are not dwelling on it just speaking out speaking up you are a great advocate and lucky to have true friends and so loving husband x x

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    • Hello dear Agnes, it is wonderful to have you here, regardless of how you found your way! You have the same D-moments as us all, and you have been one of my inspirations since we met in London a couple of years ago. xox

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  4. I have such admiration for the amazing way in which you appear to cope with the crap hand life has dealt you in foisting this illness on you. I remember well how my husband would make a superhuman effort in front of others, and then pay the price later. You owe it to yourself to be selfish, to choose your priorities carefully, and to pace yourself whenever you can. But keep writing your wonderful blog! You are an inspiration to thousands of people around the world. Best wishes, Zoe.

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  5. Take some ‘me time’ dear Kate. Sorry to hear you are having to paddle harder. You work so hard and live so fully. We had amazing times together, working hard and playing hard, during our recent mini tour of Oz but I saw something of the toll it can take on you. I hugely admire your tenacity and drive. I ask you to be kind to yourself and not get too tired… But there is an element of pot and kettle here. We are all good at giving advice to others… 😉 xxx

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  6. I’m so sorry Kate that you’re going through this, and sorry for hubby too. But I thank you from the bottom of my heart for saying these things. Because without someone saying it, and putting a human element to these scarey things, then it will continue to be an “invisible” disability. Unfortunately only the visitors of your blog will read this – the greater part of society doesn’t see it. And with Ita Buttrose getting less publicity because she won’t be the recent “Australian of the year” and advocating for more dementia friendly communities it’s up to other blogs and especially up to the media to cover the topic.

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    • Thank you my wonderful cyberfriend… seeing as I have bothered to blog about living with dementia, it is important to be honest, no matter how ugly it gets. As you say, it is still ‘invisible’, all the more reason to speak out to educate others, and break down some of the stigma and myths about the disease. Hugs to you xox

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  7. I am a new follower and happy to be one. You forge a path for others to watch and “experience” as you do – your words are a gift to every reader. Thank you for your transparency – I look forward to the journey and learning from you. Mary 🙂

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  8. Kate – my first read of your blog (via Beth’s twitter) – great admiration for you your family and your journey. I have a sister with early onset Alzheimer’s and it is hard to know and understand how she feels. Reading other’s experiences help get more insight. Thank you and good luck in your journey. x

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  9. ….Dear Kate,…….I thought long and hard before sending my comment………in mid 2010, I was facing a bleak few months before death claimed me…….now 42 months on, I am back to where I was 10 years ago, the difference being, I now know what is wrong with me and can look forward to a future…..

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  10. Kate – sending you and BUB a massive hug from NZ. This is crap! But this is life and you’re determined to keep living it…so well done and thank you for your candid honesty.
    Esther x

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  11. I so wish I could change things for you my friend….I keep hoping the shift in consciousness will happen soon and with it will come new forms of healing ourselves. I keep praying. Your strength is what captured me in the first place. Much love to you….VK xxoo

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  12. Kate, you are still an amazing woman accomplishing amazing things, and I know you will continue to for as long as you can. Please try not to get caught up in the losses, grieve them and forge ahead with the many blessings that are yours. My heart reaches out to touch your heart.

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