Cath's story (part one): 'Everybody carried on with their lives the best they could.'

Over a two part blog series, Cath Higgins describes coming to terms with her Mum’s dementia diagnosis and how she now feels whilst caring for her.

Her first blog looks at how Alzheimer’s disease has affected her family in the past and how it felt to finally receive a diagnosis.

Cathy's mum, who has Alzheimer's disease

It sounds strange I know, but I’ve always ‘known’ Mum was going to get Alzheimer’s.

My Nan was diagnosed when I was quite young, and spent her last years in a care home, with my Granddad visiting every day. The family watched her slowly disappear until she was nothing but bones and a few scant memories. And although I was never brave enough to visit her, my lasting memory is from a photograph taken in the home: a frail old woman, in a brown wing-backed chair, wearing a hat from a Christmas cracker.

As a memory goes it’s not the best and I’d rather remember her as the lovely, gentle, caring Nan that I’m sure she was when we were both much younger.

And now, my Mum

For most—actually probably for all—of my adult life, I’ve been watching out for the signs. A forgotten word, a strange phrase, some odd behaviour…the classic dementia ‘stuff’. And around 2010 Mum was finally diagnosed: to me it came as no surprise.

To be honest, I think it could have happened much earlier, but I’m not sure any of us were brave enough to suggest she went to her doctor. I know I wasn’t. None of us wanted to upset her by suggesting she was no longer just ‘Mum’, that she was somehow faulty, especially when there really wasn’t much in the way of treatment.

So, we did what most people do – think the worst but hope for the best.

And then the worst did happen

Actually, lots of ‘worst’ happened. Her diagnosis came at a difficult time for me though no doubt it was an even worse time for Mum.

Nevertheless the same year she was diagnosed I succumbed to a period of depression – buying a leaky terraced house with every penny we owned and being challenged at work in a role I no longer felt was right for me, combined with worrying about Mum, led to 6 months of ‘reflection’ shall we say. I’m not ashamed to admit that the 3 things together were just too much.

But after a period of recovery I fought back enough to change my role at work, lose weight, get fit and find hobbies I was passionate about. I even started a science degree.

Yet, whilst all that was going on, the gremlins in Mum’s head carried on. She started on medication to try to slow the progress, the efficacy of which we’ll never really know, and everybody carried on with their lives the best they could.

Mum and Dad grew closer, even as the disease that will ultimately separate them grew in her head. They started going for walks, making visits to all the beautiful nature spots they’d never explored before: they fell in love with driving around in soft-top cars like glamorous 1950’s movie stars. But unlike a Hollywood movie, there’s no happy ending.

All the time my parents were being Cary Grant and Grace Kelly the gremlins in Mum’s head got bigger, becoming more confident and boisterous, taking away more and more pieces of ‘Mum’. We could never have prepared for what happened next.

To be continued...

Follow Cath's dementia journey in part two, where she battles with the guilt wrapped up in her mum's diagnosis. If you need support and advice after receiving a dementia diagnosis, you can call our National Dementia Helpline on 0300 222 11 22.

3 comments

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Oh! I can identify with this! Nobody told us..... nobody said that when you are 60 and just retired with gorgeous grand babies to care for ............that your mother would take over your life!!! Awful disease, just awful!

Why did we have to meet you: a horrible,nasty and ruthless illness...
For every day that you stay in our life you chip away a bit of me. So many tears, arguments and sleepless nights. I keep thinking what if I have done it differently from the start? Would it be better now?
I hate being trapped, constantly having my pause button pressed, living in slow motion....

Then Im wondering when will it be ME time again?
My house is a mess, that gets me down so I start sorting it out. Then I get a call, I'm needed so my life goes on hold again....
When I get back to "my life" I'm too exhausted to see or care about the mess, it's starts all over again the next day, week, month, year.....
I'm still wondering when will it be me time?
Not just a few minutes or hours here and there that I steal.

I don't want to win the lottery, just have my lovely father in law back,
I miss him so!
All I see now is a man that look like him,but is under attack by the Alzheimer’s demon, it's not what he tells me or do that hurst me. It's seeing the pain,the fear and sadness in his eyes, this is not a life it's torture... So please let him go!
I hope he knows I still love him?

The only time the words dementia/Alzheimer’s appeared was on my mums death certificate. It was awful no support for mum no support or respite for either of us . It’s awful my mum was cared for at home by me for eight years, then almost5 years in a nursing home. I didn’t understand or know what to do to help mum or myself. I feel so guilty I didn’t give her everything she deserved I didn’t know what to do say to help I just muddled along. She deserved so much more she was so a lovely mum and grandmother one of the best.

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