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Christmas with Dementia

I love Christmas - always have.

I look forward to it eagerly. The sights, the sounds, the food, the friendship and the festivity.

But there are challenges. And the challenges grow more severe as I travel down the road on my journey into dementia. Although, luckily, I have coping strategies, I hope those strategies will carry me through the festive period without too many glitches.

My biggest challenge is that I find it harder to control my emotions nowadays.

The next most significant challenge for me is the extreme level of discomfort that I feel in noisy, busy spaces.

Putting both of these challenges together is a recipe for disaster or extreme uncomfortableness when I am out and about, trying to socialise.

I should avoid putting myself into such situations, but it's unavoidable unless I want to isolate myself from society.

And it's unfair to my wife Pam to expect her to retreat into the world that I inhabit. So I still venture out from time to time and endure the anxiety and, sometimes, the terror these events cause me.

Yesterday, Pam and I took our little grandson Tobias to watch the movie Polar Express. It was a special showing. Santa's helpers were there, providing hot chocolate and marshmallows.

There was snow, Christmas lights, and fog, all in a darkened room full of noisy people.

It was both wonderful and unbearable.

I have always been quite an emotional person. I have always had a tear in my eye when attending school events, and nativity plays. I feel a tightness in my chest, around my heart when I learn of people's suffering or when I witness the innocence of youth.

Basically, I'm a softie!

Combine that emotion with the intense discomfort I feel nowadays in noisy, confined spaces. Then, you will understand what a harrowing ordeal it was for me.

I really wanted to be there, but it took a herculean effort of will not to flee to a quiet space. I had to weigh my discomfort against the disappointment my absence would cause to my grandson and wife. Plus, I wanted the memory to cherish. So I stuck it out. And I'm glad that I did.

But every time I need to make a decision like this, it gets more and more difficult.

It's hard to describe the level of discomfort generated in some places and social situations. It starts as a vague feeling of unsettlement and a feeling of not "belonging".

But can build quite quickly into an acute, almost physical pain accompanied by a great surge of emotion.

It can move me to tears and make me rush blindly to escape to a quiet, isolated place where I feel safe.

Luckily, there are things that I can do that enable me to survive these situations. It just needs a little forward planning and coordination.

I am stronger, happier and more stable when I am focused. The best place to be when attending a function is either as a speaker, taking tickets or coats at the door or maybe as a facilitator or working behind the bar, where I can be a little bit away from loud music.

Being busy stops me from fretting. Lack of purpose allows the gremlins of sensory overload to overtake me. I sometimes wonder whether other people living with dementia sing from the same hymn book as me. I want to be part of more discussions on this important topic.

So my Christmases a quieter nowadays. I find excuses not to attend most events, and for those that I do attend, I research a little before I accept.

I don't want to spoil a good time for other people because they feel worried about me. It's not fair on them. It's my problem, and if I need to withdraw to a quiet place, they really mustn't worry. I don't need people looking in on me to ask me how I am.

I'm fine. I just need some serenity. I simply can't keep up sometimes.

My Christmases now are different, but they are no less enjoyable. And knowing that others are enjoying themselves warms my heart.

So thank you, but unless you've got a job for me I probably won't be attending your Christmas do, but I hope you all have a wonderful time.

Merry Christmas to you all.

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