Friday, 16 June 2017

Alzheimer's.....A daughter's view. by Jaquie Williams

Alzheimer's.....A daughter's view.
(Written by my awesome big sister)
Hi all. It's been a while since I've posted about how mums doing ....and she's doing ok.
I didn't feel that I could really post anything for a few months as family and friends have lost loved ones recently and it just didn't seem like the right thing to do somehow.
But as the Alzheimer's Society are raising awareness again, this week, I thought I'd let you know how mum is and how we're learning to live with things.
When we went to see mum this week she was asleep at first but soon woke up when we opened up the Cadbury' fingers! We had a bit of a sing song, as usual, and I told her all the news. I never know if she takes it in but I tell her anyway just in case. At one point mum reached across and tucked a strand of my hair behind my ear and said 'that's better'. I could have cried. These personal, tender moments are so rare these days. They are so precious and mean the world to me now. I just wish I could remember, clearly, how she used to talk to me and how we laughed together before Alzheimer's started to steal her away.
This afternoon one of mums carers came and sat with us too while we chatted together. We talked about mums life before she was so ill, the places where she'd worked and the countries around the world that she'd visited, always including mum in the conversation, trying to jog her memory in some way. Mum's carer said 'such a strong woman' and I agreed, saying that mum has always been strong and determined and never lets things get her down. Even now she still has a smile on her face and whistles a happy tune, making the best of the situation she's in.
As the carer got up to leave she turned and with a smile on her face, she said' yes your mum is a strong woman, but I was really talking about you'.
Well, I can only say, as I'm sure those of you who've been on the front line of dementia will agree, we certainly don't feel that strong at times. I've had my fair share of wobbles and meltdowns, believe you me, usually when least expected, as my closest friends can tell you. The emotional torture of seeing a loved one slowly fade away before your very eyes is heartbreaking and so cruel. It's enough to make the toughest person weep, and I've certainly done that on many occasions, and I still get that lump in my throat and tear in my eye when I see mum shuffling along in her odd slippers, a fragile shadow of her former vibrant self, or when she tells me to 'go away' in her colourful way, glaring at me angrily, wondering who the hell I am. Every week, when we visit, I wake up with those anxious butterflies in my stomach and that tightness in my chest, nervous about how mums going to be that day.
But things are becoming calmer. Familiarity with the situation means it becomes a way of life. And acceptance is a wonderful thing.
In those years when mums illness was really taking its toll on mum and us, when we couldn't really understand what was happening, and when she first moved into the care home, the feelings of desperation, frustration, anger, resentment and stress were overwhelming, and I would beat myself up everyday for feeling that way. I now know, through talking to others in the same situation and reading comments on dementia carers forums, that most people feel this way and it's understandable under the circumstances. But the guilt, the sadness and the helplessness were the worst. I kept thinking that I should be able to fix this....but of course nobody can fix it. You just do what you can.
Even though it's hard, and the responsibility weighs heavily on my shoulders at times, I'm glad that I'm the one...... With my husband at my side sharing the load and with my sister's invaluable, emotional support....I'm glad that I'm the one to be mums primary carer and advocate. I was always going to be the one....just because I was here and because I was the best one for the job. I'm not a strong person, I'm a bag of nerves most of the time but I now realise that I'm stronger than I thought I ever could be.....and I'm proud of what I've done, so far, for my lovely mum, and I know that mum would be proud of me too, if only she knew.....
Please feel free to share this if you think it will help others in a similar situation.....there's a lot of us out there. Stay strong. X

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