Tag Archives: proud

Guest blog: my daughter Gemma

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My turn to give mum a break for the day! I loved Sarah’s thoughtful, reflective post and it inspired me to list 7 things I’ve learned since my mum was diagnosed:
1) Memories might make us who we are, but they’re not the whole picture. Our emotions, our senses, our day to day interactions with people – they’re vital too. So my mum will lose more memories in the future, but can still take in a wonderful view, accept a hug, enjoy a home cooked meal, give Billy a cuddle…and I appreciate these moments more than ever.
2) I’m so full of gratitude. To some this might sound strange (and a bit cheesy) but I really am more grateful than ever for all the wonderful things in my life. For example, my partner Stuart and I recently went to a lovely hotel spa for my birthday. We’ve been there before, but this time we really relished every single moment and took the time to take it all in. Because it’s been a bit of an emotional rollercoaster recently, with lots of sadness at things lost and how unfair it all is, I appreciate the good things that much more.
3) I said to mum recently that I feel like a curtain to a whole new world has been lifted. I didn’t know much about dementia before and nor do lots of people. I’ve certainly had some ‘interesting’ responses to the news in the form of rather insensitive comments (thankfully this is very rare). But I completely understand. If you’re not touched by dementia, why would you know what to say, or what a diagnosis really means? And of course, it affects everyone differently, so there’s no ‘one size fits all’ response. Through my mum, I have access to a whole world of people living with the condition, carers, researchers, activists…and it’s inspiring! But I wish it wasn’t so hidden away – I want all the negatives and the positives to be out in the open for everyone to see.
4) This is why I’m so proud of my mum. That sentence doesn’t do it justice really. I can’t put into words how proud I am. My sister said recently (sorry to steal this from you Sarah!) that it’s as if having dementia hasn’t changed my mum…it’s just enhanced all the best parts of her personality. I couldn’t have put it better myself!
5) I’m in the latter stages of doing a PhD at the moment. I used to practice in the subject I’m now researching, and to be honest I had started to feel like I was a ‘cop out’ for not remaining on the frontline. But my mum is so passionate about research and how important it is that’s it’s made me feel more comfortable with my decision. Now to actually finish my thesis…
6) I don’t sweat the small stuff anymore – or the big (ish) stuff for that matter. For example, if I lose my keys, or get a date wrong, or get lost – it just doesn’t affect my day. Or if I reverse out of my drive into a parked vehicle…that happens to be my partner’s car…that happens to be a company car…well, no one was hurt and these things happen so I’m not going to waste energy beating myself up about it. (I can’t say Stuart’s reaction was quite the same).
7) I really do appreciate how lucky my sister and I am regarding early decision making. I’ve heard terribly sad stories where people don’t know their loved one’s wishes and they have to make heart-breaking decisions in the later stages of dementia. It was a very emotional, difficult experience to complete the Power of Attorney paperwork with mum but I know now that her wishes will be respected and that means a lot to me.

I could write about many more things I’ve learned but these feel like the most important to share right now. If I could sum up my feelings in one sentence, I’d say my mum is still my mum and always will be.

Mum giving me the gift of reading :)
Mum giving me the gift of reading

Guest blog: my daughter Sarah

Sarahs blogI’ve been invited to invade my mum’s blog (and give her a break for a day!). I’m Sarah (picture above, mum made me put it in!). I’m 34 and Wendy’s eldest daughter. I’ve gone back into education as a student nurse and also work for a care agency to fund my studies. This mainly involves working in care homes (in
which many residents have dementia). When I moved to York to start my studies in October 2012, I moved in with mum.

Just under 2 years ago my mum had a series of mini strokes. This came as a big shock. What mum hasn’t really mentioned in her past blogs is how fit and healthy
she is. Only 4 years ago she did the 3 peaks in 9 hours , she walks miles (and very fast, I always have to remind her to slow down when she’s with me!), and she has
the most healthy diet of anyone I know. So it seemed massively unfair that it happened to her.

Following the strokes her memory started declining further and she was sent for all sorts of tests. Even though I lived with her at the time, there were two reasons why it wasn’t very obvious to me what was happening. 1. She has very good coping mechanisms in place which she has hidden well and 2. I have always had a very poor memory so I just thought it was normal!!

Even though we were all expecting the diagnosis, when she was actually diagnosed, it was a big shock. I think we all had a bit of hope there that it wouldn’t be Alzheimer’s and there was some other explanation. Mum has been inspiring in her reaction and coping mechanisms. Mum is a practical and organised person by
nature and as soon as she had sorted a few things like finances out, she appeared to feel more in control and has thrown herself into her work with Alzheimer’s
Society. She is a demonstration of creating positives out of something really horrible.

I had thought it was very handy that I lived with her so I could eventually help more as the illness progressed. However, when my boyfriend asked me to move in with
him about 5 months ago, mum pretty much pushed me out the door!! (Mum adding – I even helped her pack!!) What I hadn’t realised, was that mum didn’t want me or Gemma (my sister) caring for her in the future. She doesn’t want the burden on us to give up work and look after her when some days she may not know who we are. Although I would of course care for mum as I love her very much, I know that is the last thing she wants and I have to respect her wishes.

One of the hardest things so far was the three of us going through the Power of Attorney forms. It was hard hearing about mums wishes for when she inevitably loses mental capacity and can’t make decisions for herself. However, I can’t stress how important it has been to do this at this stage. Me and Gemma are now 100% clear on exactly what mum wants. So although it was difficult, mum is going to get her needs met when the illness takes hold. Also it will mean that me and Gemma won’t actually have to make any decisions for mum, as mum has made them all herself.

The word ‘blog’ hadn’t even entered mums vocabulary before so I’m really happy she has found this different way of putting ‘pen’ to ‘paper’ which means we can all
learn about her experience

Sarahxx

Sarah and me