Dementia: The Only Way To Survive

Christmas. The time of giving, sharing, spending time with loved ones and eating whatever the hell you want, whatever time of the day you want to.

Chocolate Orange for breakfast?

Why the f**k not!

A whole (family sized) pack of kettle crisps as a snack before a 3-course dinner, including cheesecake, ice-cream and cake for dessert?

Of course!

I feel heavy. My jeans are a little tight. My skin looks a little dull and I am avoiding all mirrors. This is not good as most women over a certain age will know – you don’t pick up the tweezers for 24 hours and stray hairs can spring from the strangest places on your face and body! I have a friend who has a dark hair that grows out of her forehead! I mean….really? Women get to a certain age (around 40) and our faces decide it’s not nice to be cold, so they start growing hair to keep our chins (and foreheads) warm! Oh, but the hair on your head is no longer needed, so that starts to thin. It’s like robbing from Peter to pay Paul. If I’m honest, I’d rather it stayed on my head and kept the f**k away from my chin – but it doesn’t appear that I have a say in the matter.

Anyway – hairy chin (or forehead) aside, Christmas is over and I am glad.

I love the run up – the excitement, the panic. I always leave it a little late and perhaps subconsciously I do this on purpose, as it adds to the build up. This year was no different – Hubby and  were busy wrapping Santa’s gifts on Christmas Eve, throwing sellotape at shitty paper that kept ripping if you did more than tickle it. We both hated it and headed to bed at about 11pm, knackered and feeling as un-Christmassy as we possibly could. Hubby cross, because he had seen exactly what shite I had actually bought and me, pissed off because all the buying and organising was, of course left to me, so how the hell did he have the nerve to simmer crossly as he held up presents and looked at me quizzically? Cheeky f**ker!

Christmas was lovely, despite the disorganisation in the run up. We saw family before and after and then we had my dad here for New Year. All in all, a successful festive season.

I have today come back from Scotland after taking my dad home. Mabel came with me, under duress, I might add. We stayed the night and this morning I went and visited my mother for the second time in a week – the first last week when I went up to collect said Father for his trip to Yorkshire.

Last week, Mum was asleep in bed. We couldn’t wake her. She was curled up, her safety bars up at the side of her bed to stop her falling out. Her right hand curled round in an unnatural curve, her hand swollen and her wrist fused into an awkward, painful position. We know it is painful, because even in her sleep, she winces when you touch her hand.

I don’t mind when she is asleep. The visit is always easier to cope with when she is and more often that not, just now, each time any of us visit – including my father who still visits regularly – she is usually unresponsive and asleep in either her bed or bent over in an armchair.

Today’s visit started the same. It was nice to see that she was in the lounge area and we were informed that she had eaten a decent breakfast – some porridge, some coffee (she never used to have coffee for breakfast!) and some juice. However, although in the lounge, she was bent over, slumped down in her chair and fast asleep.

We spoke to her, we stroked her hand and her thighs. Her shoulders and her knees. I gently tucked her fine hair behind her neat ears and told her all our news. I told her that Martha would be 10 tomorrow! I reminded her of how, ten years ago she came down to Yorkshire and was decorating my kitchen the day after I’d had beautiful baby Martha.

No response.

I told her that Mabel was there. Mabel rubbed her Granny’s hand and leg and together we sang a few songs, quietly, so as not to upset or impact any of the other residents in the lounge (who were all, apart from two ladies, also slumped over and fast asleep). We sang A Million Dreams and then realised Mum wouldn’t know those songs. Then we sang Daisy, Daisy (give me your answer do…..) and Lavender’s Blue, Dilly, Dilly, Lavender’s Green.

Nothing.

“Granny!” we tried. “Jean?” said in a Scottish accent – it was the name she was always called at home as a girl. “Hallllloooooo Jean!”

Nothing.

“Red wine! Fish and Chips! Breakfast time!” – some of these had, on previous visits emitted some sort of response. But, not today.

I then lent in and held her hand and told her we would be going. “It’s time for us to go home, Mum,” I said. “Emma is coming up in February and I’ll be here again in a few weeks to see you.”

And, the worst thing I could possibly have imagined happened.

Her face crumpled up and she started to sob.

I could hear her quietly wailing, in the back of her throat and deep in her core. Her body shook as the sobs found their way of out of her somehow. Her eyes were still closed, but she was crying. And then she tried to talk to me. Just sounds came out. Quiet and nonsensical. Strangled sounds, caught and confused by her dementia and the physical response to her sobs.

I hugged her tight. I told her I loved her. I told her it wasn’t fair. I told her we all missed her and that she was not alone.

I didn’t know what else to say.

And she continued to cry. Her face crumpled. Tight, strangled sounds escaping from her throat.

Does she know?

Are there moments when it all makes sense and the connections in her brain align and suddenly she just knows?

I f**king hope not.

You might ask why. Why would I not want my ailing mother, who has early on-set dementia to have any lucid moments? Why would I not want her to return to us, even if it was for just a few moments every day, or week, or every 6 months?

Because, the only way to f**king survive this is to convince yourself that she’s gone. To believe that she has no idea she’s living in a care home with people who are simply existing, waiting to die. People put there because there is nowhere else for them to go. Because as a society we simply cannot cope with them.

The thought of my mother knowing where she is living and understanding what is happening to her is too painful to comprehend. But, of course this is a possibility. Her brain may well have the capacity to understand the situation she is in, it might be that she just cannot communicate that to any of us.

I hope not. But, today, it seemed very bloody likely.

Tomorrow is Martha’s tenth birthday. Another day where I will enjoy the celebrations, but where I will try and hide the darkness, the sadness that now lives within me from my family and my amazing children. Christmas day was the same. I enjoyed it, but I also had a few moments to myself, a little tear and a moment to remember when life was simpler and I didn’t really know what it was to be truly sad.

Perhaps this is what life is. Darkness and sadness, interspersed with moments of light and fun. Perhaps that is all we can hope for.

Heading back home again, our packed lunch on our knees, Mabel helped to add a touch of light into the day.

“I know what the Queen is really called.”

“Really?” I asked. “Her real name?”

“Yes.”

“Go on then, tell me, what is it?”

“A Liver Birth.”

“A liver birth?”

“Yes.”

And, we laughed. Or, I laughed and Mabel joined in, unsure what I was laughing for or what was so funny. She didn’t understand that for a few seconds, her mispronunciation was simply the perfect thing to happen at that moment, to deflect from the harsh reality of the day. To remind me that life could still be funny and light.

I miss you, Mum

x

 

14 thoughts on “Dementia: The Only Way To Survive

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  1. Read this and so know your thoughts as having them myself about my own mum. You writing them helps me so much. I hope it helps others try to understand how it feels. You are so brave. No answers for you on the facial hair ! What is that about!!!! And you made me laugh at the Xmas eve scenario – I think my mum would have done the same but I was just never aware there was so much stuff to do to have that Happy Christmas. Thank you so much for your thoughts and your dad’s too – take care x

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  2. My grandfather has recently gone into a nursing home and this rang pretty true for me. I often wonder if he knows where he is and it is painful to imagine that he has moments of lucidity where what has happened to him makes some kind of sense. I’ll definitely be following your blog – I need to read more about people who are battling on despite the hardships dementia brings.

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  3. Thank you for sharing your thoughts. My mum is suffering from dementia brought on by her cancer and I find Christmas one of the harder times. Your blog is very helpful and relateable.

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    1. Thank you for your comment, Caroline. I’m sorry to hear about your mum. Christmas can be so hard for so many people….sometimes the success of Christmas is just getting through it! Sending love and best wishes your way. It’s a horrendous thing x

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  4. Hi Sarah. I am a long time reader who has found your blog so helpful over the last couple of years. I’m 38 and my Mum was diagnosed with mixed dementia two years ago at the age of 72, having shown symptoms for probably five or six years before that. My Dad, my Mum and I have had a grindingly hard week this week, to top a difficult Christmas. Yesterday, as I was feeling furiously sad and just plain furious(!) about the whole situation, my Mum sat down next to me, put her head on my shoulder and wept. Like you, I can’t be sure (and she isn’t able to tell me) what the tears were for – for her, for me, for the whole sorry situation – but I do know how much it made my heart hurt. So really I just wanted to send empathy to you and thanks (big thanks) for writing your blog and sharing your Mum’s story. I am sure it makes a difference to many people. Take care. Xx Hannah

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    1. Oh Hannah, I’m so sorry to hear about your mum. It’s bloody horrendous, isn’t it? Until you’re in it, there’s no way of knowing or understanding how utterly devastating it can be. Thank you for your words and for reading my blog. I’m glad my words and my family’s experience has helped you, even if only a little. Keep strong when you’re able and cry hard when you need to. Enjoy the simplicity of a moment when you can and cherish your memories.
      My heart hurts for you.
      Sending love and best wishes you you, your dad and your mum
      Sarah xxxx

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  5. Thanks Sarah – that’s really appreciated. It is the worst thing – in the absence of having the words or time to explain it better, I find myself saying that to people a lot. The other thing I do is share your posts. I think they do a brilliant thing in making something unknowable more knowable (if that makes any sense!). I want to scream about how badly we need a cure so that brilliant and beloved people like your Mum and mine aren’t lost to dementia, and families aren’t swallowed up in the tsunami of it. Courage and love to you and your family too. xx

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    1. I couldn’t agree more – feeling like you want to scream and shout about how horrific it is! Describing it as a Tsunami….. brilliant! I suppose my blog is my way of screaming and shouting about it – thank you for sharing. Courage and love right back at you xxx

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