This might be last Christmas my dementia-hit dad remembers and we can't spend it together

WITH Covid rules likely, families are facing a very different Christmas this year.

But for many, this festive season is extra important.

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Michael O’Reilly, 73, from Solihull, West Mids, was diagnosed with Alzheimer’s in September. Now he may not get to see his family over the festive season.

A week after it emerged that footie legend Sir Bobby Charlton has dementia, Michael and his daughter, writer Clare O’Reilly, 41, from Plymouth, reveal how his diagnosis has made this Christmas more important than ever.

Clare says…

I HAVE no memory whatsoever of my first Christmas with my dad, Mick, now 73.

Yet he can remember everything about it. What I got, who we spent it with, what I wore, how I loved the wrapping paper more than the teddy bear family he and Mum had picked out for me, my obsession with the lower-hanging baubles on the tree.

Fast-forward 40 more Christmases and while it won’t be his last, it could be the last one my dad remembers.

Diagnosed with Alzheimer’s and vascular dementia in September no one can tell us for sure how many more Christmases he’ll be with us physically and mentally, and how many more he’ll remember and be present for.

Having lived with epilepsy for the last 41 years after a brain injury, Dad’s been a bit forgetful and confused for around eight years.

He was diagnosed with mild cognitive impairment — a precursor to dementia or Alzheimer’s — in 2012, and while his diagnosis is recent, his specialists believe he could have been living with his combined diagnosis for a few years already.

While my mum Irene, 73, brother Mike, 44, and I will rally round him this Christmas however the rules allow, we’re not the only family going through this.

Figures from the Alzheimer’s Society show an annual spike in calls to its helpline every December, with more expected this year because of the pandemic.

Every three minutes someone develops dementia in the UK and people with dementia have been worst hit by coronavirus.

More than a quarter of all coronavirus deaths have been people living with dementia.

Meanwhile, a survey from the Alzheimer’s Society revealed that around four in five people with dementia have deteriorated since lockdown began, with a third losing the ability to speak, and a third saying they feel like “giving up”.

When Mum called confirming Dad’s diagnosis 12 weeks ago as they were put into a local lockdown, it felt like we were falling into a bottomless pit.

There was no “Maybe he’ll get better” or “Maybe there’s a new treatment”.

Anyone who has faced the diagnosis will know there’s nothing but a yawning chasm with the unthinkable at the bottom.

We all cried, and while Dad tried to understand his diagnosis and what it might mean for his future, I took the difficult decision to tell my three children Eddie, 16, Sammy, 12, and Annie, nine.

After explaining his condition, its unpredictability and pathway with a lump in my throat, it was Annie who asked the first question, “Does that mean Grandad will forget us?”.

Her eyes brimmed with tears as I nodded and told her, yes, eventually, Grandad will forget all of us.

He’ll forget all the Christmases we’ve shared, he’ll forget teaching me to ride my bike, he’ll forget every coffee we’ve shared together.

He’ll forget every school play, he’ll forget my wedding day, he’ll forget their births and eventually, we’ll all become unfamiliar faces to him as the father, husband and grandad we all know and love disappears bit by bit.

'SO MUCH UNCERTAINTIY'

Like many families across the country, lockdowns, bubbles and restrictions mean I wasn’t able to rush to their side in Solihull from Devon when Dad was diagnosed. We’ve had to make do with FaceTime and messages.

While we should be planning a Christmas to remember — one that might have to last all of us the rest of our lives — we still don’t really know how we can celebrate.

If the tiers and Rule of Six are reinstated, my family of five means either Mum or Dad can come for Christmas — and my brother and his son Michael would make it nine.

But while there is no denying this diagnosis is life-changing and earth-shattering for all of us, the Dad who remembers everything about my first Christmas is still there and we are all determined to use the time we have left where he does remember us to make memories we can cherish long after he’s mentally and then physically gone.

There is so much uncertainty surrounding a diagnosis like this — and not knowing whether we can be together at Christmas adds to that.

My brother Mike and I want to take Dad to Hay-on-Wye to visit the second-hand book-shops he loves.

We want to plan a trip to the Highlands so he can see the Northern Lights he’s read about since he was a child.

But we can’t do any of that. The average life expectancy for someone like Dad is five to ten years from diagnosis.

With his brain injury and having had two brain surgeries, Dad’s path is far from clear and no one can tell us where we’ll be as a family 12 months from now.

But rather than succumbing to hand-wringing grief, we are determined we make sure his dignity remains intact as long as possible.

As the pandemic looms behind and in front of us all, I’m aware I now have a limited window to make as many memories as I can with him, ones that will have to last me the rest of my natural life.

And my three children are acutely aware of this, too. They have been texting Grandad more than ever since his diagnosis, and I love modern technology for the record of messages they will have forever once he has gone.

FACETIME DINNER

As for Dad and me, we’ve spent hours talking about it — and while he is overloaded with sympathy, not one single iota of it is for himself.

He is distraught at what we will have to watch him go through and how hard it might be on us.

His selflessness is both staggering and life-affirming in equal measure.

For the last two years we have taken Dad to France on our family holiday.

For months before we travel I get texts from him counting the number of sleeps until we go.

I want to get those texts in the run-up to Christmas, but instead we are facing the reality that we might have to do Christmas dinner over FaceTime.

We all know we are fortunate not to have had Covid yet, and there are many people in situations worse than ours, but we have enough uncertainty in our lives with his diagnosis, we don’t need more.

We all want to know what is allowed and when so we can plan and come to terms with the fact we might not be able to be together.

One thing I am sure of — he and Mum went all out to make my first Christmas in 1979 special.

Four decades later, it is my turn to do the same for him.

How to make big day special

IF you have a loved one with dementia visiting this Christmas – Covid restrictions permitting – there are ways to reduce the stress for you all and make it as relaxed as possible.

  1. Plan ahead. If the house feels unfamiliar to them, put clear labels on the doors to help them find their way around.
  2. Think about safety. Leave the lights on and keep internal doors open, especially at night.
  3. Food and mealtimes. Don’t overload your guest’s plate. A full plate can be quite daunting and they might also feel self-conscious, so avoid making them the centre of attention.
  4. Emotional needs. Think of some activities to enjoy in quieter moments, such as looking through old photos or going for a quiet walk together. Designate a “quiet room” they can go to if things get noisy or too much.
  5. Remember your own needs. Try to pace yourself, set realistic goals and remember to take time for yourself too.

Michael says…

IN my heart I knew I had something wrong with me before it was diagnosed as dementia and Alzheimer’s. For the last two years when I’ve woken in the night I don’t know where I am and it takes a few seconds, sometimes a minute or two, to remember I’m at home.

Despite living here for 36 years, if I’m out with my wife, Irene, I forget what the front of the house looks like. I’ve grown familiar with those feelings, that uncertainty, but labelling them – while it felt like being hit with a brick – was a relief.

I’d worried it was a brain tumour and while people might think I’m mad to prefer this diagnosis to a brain tumour, it’s just how I feel.

It’s hard to admit I’m frightened but I am.

I’m terrified. I’ve had almost 50 years of marriage with Irene and we’ve raised a family – while those memories will go for me, she has plenty that will last her.

The same with Michael and Clare, we’ve had holidays to Barry Island, Prestatyn and Scarborough with fish and chips and pickled cockles on the beach.

We’ve had plenty of Christmases and birthdays together.

I’ve watched them graduate from university and have their own children, but it’s my four grandchildren I’m most saddened for.

I’ve only had six years with my youngest grandchild, Michael, and whatever memories we make together will have to last him forever and they might fade for him as he grows up.

I know I won’t be present when it happens but I dread not knowing their names when I see them. I can’t imagine the hurt they’ll feel when that day comes and that’s heartbreaking.

Having had epilepsy for 41 years and thousands of seizures, many of which I had no idea were coming, I’m familiar with uncertainty, with not knowing what will happen next. But I do know this diagnosis isn’t going anywhere and I have to accept that.

I’m reminded of it every time I watch The Chase. I used to be able to get a few questions right, now I’m very lucky if I get one. Despite staring down the barrel of an abyss though, I don’t feel sorry for myself. Why would I?

I’ll be ignorant in bliss, it’s the family I love who’ll have the hardship, not me. I feel guilty they’ll have to endure the hurt that comes with this diagnosis – with being forgotten – but I’m helpless to prevent it.

I’m not scared either, we all have to go some time and I’ve had a life far richer than a lot of people.

I know Clare says at my essence I’m a decent bloke and will still be that even when I’m not anchored by my history or a past or family I’ve forgotten, but I can’t help but wonder who I’ll be when I’ve forgotten myself.

Christmas has always been our favourite time of year as a family and however we can, we’ll make memories this year like we have done every year.

I know I’ll forget them at some point but my diagnosis isn’t about me, it’s about all of us and I haven’t been as excited about a Christmas since I was a child.

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