Birthdays and friendships…

Firstly, happy 50th to one of my new friends Sarah Yeates. We met as I was invited to speak to her organisation, then she offered to become a volunteer for DAI, and now, I would consider we are friends. I was disappointed not to be able to travel to Victoria on the weekend just gone to celebrate her birthday with her! This photo is of us together, somewhere earlier this year.

My blog today, written over a few months, started because over the years, I have said, and have heard over and over again from literally hundreds of people with dementia (and our/their families) that many ‘close family and friends’ disappear from our/their lives, after the diagnosis of dementia is made known to them. My husband and two sons and I have certainly lost ‘active’ support from a great number of people who used to hang out with us, and who perhaps simply have no idea how to respond to a diagnosis of dementia. Perhaps people with dementia have unrealistic expectations, but when you compare it with how people respond to other serious illnesses, for example cancer, it is vastly different.

We all, even those around us, have to deal with dementia in our own ways, and as the late Kitwood said, and I hear quoted all around the globe, ‘if you have met one person with dementia, you have done just that; you have only met one person’, and we all experience dementia differently, even those of us with the same type or cause of the particular type of dementia we have been diagnosed with. We all also know, our doctors do their VERY best not to misdiagnose us, as it is, quite frankly, a very difficult diagnosis to make, and even more difficult to receive.

But on the topic of losing friends… I stand corrected.

We do still have many life long friends around us, but also, the thing I have perhaps forgotten to say more often, is that we all develop a lot of new friends, and thanks to the internet, and our online or in person groups such as Dementia Alliance International, and others such as Dementia Mentors or the DEEP groups in the UK, many of us have a large ‘network’ of new friends, people who we share our darkest days with, people who understand exactly what we go through on those days, and people who never ever discount how we feel, or question our dementia. And those people become our family and friends, and replace those who have left us

The DAI Open Members meeting a few weeks ago, reminded me of how much love and support we do receive, and how much we do to support each other. If you have dementia, please consider opening the link and joining us.

I’ve been lucky, as a large group of long term friends and some family still hang out with us, as well as my ‘adopted’ sisters and brothers, who have ensured we feel loved and supported. Interestingly, many of the ‘old’ friends who are still here for us, were all nurses,  physiotherapists or allied health professionals, and we also have the support of a few ‘adopted sons and daughters’ and their wives and families, as well as have a group of wonderful neighbours, very close to our front door or just across the road.

Perhaps chosing not to accept Prescribed Disengagement®, and reinvesting in life by remaining active in my community, and continuing to live my own life, has been the key to this?

 

13 thoughts on “Birthdays and friendships…

  1. Wow Kate-i love your blog-your amazing and inspirational-and how you have coped with dementia amazes me. Even though i dont know you your work inspires me and your acheivement are outstanding. I hate how people take people with dementia for granted and take advantages of them-they may have dementia but they are still in this world and they are still a special part of your life despite the illness.
    When i am older i want to do lots of work for the dementia foundation and i want to be an ambassador for dementia-when i am older i want to write a book on dementia, work at the memory shop, do memory walks for dementia, create powerpoints, do volunterring councelling and free seminars to help people with dementia familys cope and help make the burden easier-there is a very personal story why i want to do all these things. My grandad is 86 and unfortunately he has really bad alzhiemers. His dementia started in 2010 but got officially diagnosed in 2015-we wished we got him tested earlier in hindsight but we had no family history of dementia so knew nothing about alzhiemers. He is very very muddled now and is at stage 6 of the spectrum(there are 7 stages of alzhiemers)but still remembers how me, my dad, and my sister are, and my aunty too but unfortunately doesnt remember who my mum is. He cant walk fast and you cant have a proper conversation with him now-his mind just goes round in circles. He is in fiaryland every day. He is still living at home but that is because my grandma is in amazing health-otherwise he would be in care. He gets agitiated by small thing(especially his keys and glasses)and rings up random people on the phone and is very fixtated about his papers however he is generally happy and relaxed which is good. My dad does a wonderful job looking after him and takes him out each weekend for coffee, normally a walk and too a place most weekends to give my grandma a break. I am very proud of what my dad does for him. My aunty support is useless though, she does nothing to assist, and she wont even speak to him now-unfortunately my grandma isnt getting enough homehelp n needs more help.
    I would love to read your books and i am so pleased you have managed to maintain some of your “old”friends and have managed to create new friends.
    I am from New zealand(Nz). I do hope you are coping okay and i love listing to your videos-they are fab!
    All the best, take care and look forward to hearing from you
    Sam

      • Hi Kate, thanks 4 yr message,n i am starting to write a book on dementia-i am writing a book on my grandads experience, and i have almost done one chapter. I would love to buy your book and read it-sounds very interesting😊dementia is horrible n i think my nana(my mums mum)has the very early stages of it, although she has alot of health problems and has had many operation-she has a weak hard but hopefully we dont have to start the journey again with another grandparent. I sure will keep up the great attitude and i found plenty of ways to fundraise for dementia/alzhiermers😊all the best. sam

      • I will keep you updated with my book and all the proceeds will go to Alzhiermers when i have completed it, but am busy with my school studies so not overdoing it-just doing it when i have time-i am not going to write any more for awhile as i have just finished my first chapter and i want to keep proof reading it till all the grammar and punctation makes sense!

      • Keep at it Sam… one tip, from someone who has written a few books now, is just write, and then fix the grammar etc at the end, or you may never get to the end. Also, if you find a publisher, they do most of that for you anyway, and they have professional editors.

    • Hi Kate, thx 4 yr reply n those tips-there very useful thankyou!I am a novice at writing books but i will keep writing n spend lots of time on grammar at the end! Thats a great idea that they can fix it for you!Have a great day!😊

  2. Remaining active is certainly very important. But it’s also important to “find your own tribe”. Depending on the parts of the brain that are affected, some people’s personalities change significantly after diagnosis, and for this reason alone you can’t expect things not to change. Plus some friendships are made because of a common denominator like work or sport, and once you stop this “common denominator” then the friendships fade, which is also normal. But when you lose so many friends for so many different reasons, all at the same time, it’s quite significant and for some, quite upsetting 😦

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