Comparison with others……….

Not the most sensible thing to do but I’m always curious to know how everyone is getting on but wasn’t prepared for the shock at the recent 24hrs with Dementia Diaries meet up….

I think of myself as being the one helping others last year, I’m sure I did….so imagine the shock this time when it was me being helped – physically and mentally….

August is also a time when my routine of busyness  goes out of the window. Worryingly, I start to love simply sitting in my bed in silence and having silent conversations on my iPad . I get used to NOT doing which then makes it harder when something comes along. It’s a vicious circle – if I DO stuff I get exhausted, if I DON’T, dementia takes over……..can’t win…

Looking around at people I know, also living with dementia, it’s hard not to compare. Staring at all the people in the room, I felt like I’m being left behind, or has my dementia taken a leap ahead?

The sheer exhaustion of trying to keep up, trying not to let the words escape my mind before I’ve spoken, hence the banging head that inevitably appears.

I could just sit and let the discussion wash over me, allow dementia to win….but when I’m with people  I WANT to keep up, I WANT to contribute, no matter how hard. The price to pay is a couple of days of a banging head in tow.

Physically, my balance has gone totally wonky….Philly’s arm the steadying force down to the campfire and back. Unable to carry my own tray of food. My first thought at looking at the food on offer, was, well I don’t feel hunger anyway, so it’s easier not to eat at all than to have to make a choice and work out how to carry it….but Philly must have seen me and came to the rescue.

Embarrassing? yes….annoying?, yes, sad? Yes, but that’s what lays before me. I’m not used to accepting help, so that’s a new world to me that maybe I just have to accept.

But it’s  as though there’s still this old me locked inside my body looking out, often aghast at seeing and hearing what I do and say but unable to stop me, simply observing. I’m even conscious of the old me being that old self sometimes; I’m so aware of my old self inside at times which I find quite comforting.
We often talk inside our heads and I often ask me, ‘What would the old me do’ in certain situations, in order to think as I used to think. The old me is still there helping me from within.
I suppose the time will come when the old me will fade and eventually no longer be there, a sad thought, but while she is, I’ll welcome her with open arms….

Of course, many of our issues are only seen by ourselves or those closest to us, so maybe mine were just more visible this time at Woodbrooke……we all have our own unique challenges and our own way of dealing with them……

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

17 thoughts on “Comparison with others……….

  1. This article was so well written (as always Wendy). The way you explain what is such a complex issue for most, is remarkable. You have had one heck of a busy, even if rewarding time this year. I feel tired just thinking about all the meetings,book promotions and other assorted things you do! You show kindness & support to so many others, just do the same for yourself. xx

    Liked by 1 person

  2. Hi Wendy,this is the first time that I have replied to one of your posts and I have read many of them. In 2014 my mom was diagnosed with early onset dementia at the young age of 64. She is being taken care of thank goodness and I visit her as often as I can. The reason I responded to this post is that it resonates with me deeply. I sense my mom feels this way as you have described and it makes me cry to know that the frustration she must feel when she did not suffer vs the time now when her old vibrant and bubbly self just wants to break out must be incredibly hard. I watch her going through this and it breaks me. I love her because she is my mom, dementia or not

    Liked by 1 person

  3. Thanks Wendy for writing down what I think my mum was feeling and thinking with everyday tasks that might not seem challenging to the people around her at the time. You raise so many important points to consider, for anyone recently diagnosed or their loved ones so many helpful observations and tips to help with the everyday living. Thank you.

    Liked by 1 person

  4. Soory to hear. I know exactly what you mean, am over here in the UK from Australia and am really conscious of the amount that I have slipped since my last visit….struggling with walking and climbing steps, and finding it so hard to follow the conversations, but working hard to do it. Nightmare, isn’t it? Take care. X

    Liked by 1 person

  5. Well said Wendy and I think you are amazing. I haven’t been in touch as I’m struggling with so many things at the moment but I do enjoy reading your blog!!
    With love Vicky C

    Liked by 1 person

  6. This is the woman I was talking about, just read the book

    On Thu, Aug 23, 2018, 5:59 AM Which me am I today? wrote:

    > wendy7713 posted: “Not the most sensible thing to do but I’m always > curious to know how everyone is getting on but wasn’t prepared for the > shock at the recent 24hrs with Dementia Diaries meet up…. I think of myself > as being the one helping others last year, I’m sure I di” >

    Liked by 1 person

  7. Hi Wendy. I haven’t written on your blog before but feel the need to. First of all I think you are an incredible woman and an inspiration to us all. I too have read tour book and found it enlightening. I wish that I could give it to my Mum to read (she used to love reading her books) but sadly she just can’t concentrate now. She is 92 and has had vascular dementia for a year now. She has been in a dementia home for a year now and it’s lovely there. She gets taken out on trips x

    Liked by 1 person

  8. Hi Wendy, I too am suffering from dementia. I am carrying on the “family disease”. I was in my early/mid 60’s when I first noticed something was not right. Because it is a “family” disease, I knew what was happening. I refuse to give into it and I continue to do everything I have always done. I might have to work a little harder at something, but I will not sit down and let this take me yet. I watched my Father not allow my mother to do anything and she just gave up. It was so hard to watch. Now that it is my turn, I am so grateful to have a husband that allows me to make mistakes and helps me try and stay “me” for as long as possible. I wish they could come up with a cure or at least drugs that are more helpful than what is available now. I still do everything I have always done which includes taking care of my own finances, taking care of a large house, cooking meals, shopping etc. Unless they come up with a cure soon, I know what my future holds and I am scared. Sometimes not knowing what is coming is better. I keep hoping for a cure or at least meds that are more helpful. As it is now, I do not use the meds recommended. I use “medical” marijuana (I live in a medical marijuana state). So far it has been VERY helpful, but I have noticed lately that it does not work quite as well as it did and I have to use it more often. My schedule has been a CBD capsule late morning and late afternoon and a THC capsule at bedtime. Until just recently that has worked REALLY WELL. Now I need to experiment with adding another dose during the day. What I would like to say to others dealing with this disease, is to not give up and don’t be afraid to try “alternative medications”. What have you got to lose? If they don’t work, you just stop and go back to what you were doing. Also do a lot of research on medications for dementia (recommended, and other options like cannabis). At this point who cares what people think about what you are using. You also do not need to tell anyone what you are taking. It is your business and your life. Good luck to you and feel free to stay in contact with me, if you want.

    Liked by 1 person

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