Living with Dementia in a global pandemic.

Whilst many of you have been worrying about Covid- yourself and family members getting ill.

I, like many others became a fulltime carer, and looked after my nan!

Being kept in quarantine this year, I’m sure most of you would’ve experienced losing your routine can have a negative impact on your health.

You likely felt depressed, experienced losing your sense of purpose, and some days felt hopeless looking into the upcoming weeks.

My blog, ‘living with Dementia,’ already explains the illness, Dementia, and what it entails.

I suppose you could call this ‘part 2- Covid edition’.

Since the effects of Covid on my Nan, Gill, have been too much to even consider putting into words for you.

But I want to try my best- because this is just a more in depth analysis of why having a routine in our lives is significant!

Dementia patients, especially, thrive on a routine for a sense of normality.

So what happens when they lose it?

Firstly, was a surprise visit from the police one day.

“Is this your nan?”

-Yes it was.

With a mischievous smile painted on her face she wobbled towards the house.

“Someone found her on a bench. She looked lost and didn’t seem to know what she was doing, or where she was.”

“Thank you for bringing her home. I hadn’t even noticed she left!”

I felt pretty embarrassed to be honest.

“Thought you’d go for a walk and not tell anyone?” I asked jokingly.

Gill was still balancing on a tightrope back to the front door.

“I don’t know what I was doing. I was just walking!” she defended.

30 minutes after settling her with a coffee in front of the TV, the door slammed shut.

Bolting down the road, from out of the window, was her symbolic, worn-red, jumper.

She stopped to turn around after I shouted out for her.

“Where are you going?”

Confused and frustrated, she explained, she was just going for a walk.

“You’ve been for a walk today! Remember? The police found you looking lost.”

“I don’t remember that.” She said.

“I made you a coffee when you got in. It’s probably ready to drink now.”

In the beginning.

The beginning of lockdown were the easy days.

I wish I’d spent more attention gaging her reactions to things- both positive, and negative.

That day, she came back inside with good grace.

And the following morning, after mum had left for work, she did too.

This time she’d been in her dressing gown and slippers, making her way out of sight, and towards the town.

“Gill where are you going?”

“Oh just for a walk, is that not ok?”

“Not in your pyjamas it’s not! Let me make you a coffee.”

She looked down at her attire. Flapping frustratedly she stated, “This is my normal clothes!”

“No Gill. That’s your dressing gown, and they’re your slippers. Let’s get changed. Have a coffee, and then we can go for a walk.”

She got back in, drank her coffee, and got changed. But suddenly she no longer felt like going for a walk…

….Until an hour later.

I heard the door slamming, and saw that red jumper flying, just after I’d settled back into my tasks.

There have been uncountable hours- days- weeks and months…

Well lets just say this doesn’t ever stop.

We’ve just gotten better at managing it.

In the middle.

Abruptly leaving the house, and wondering off, became the new thing.

Throughout all the stress of trying to keep Gill safe, and inside, I forgot I was living in a real life pandemic.

My morning script became reminding Gill there was a virus, so she was spending the day inside.

Before noon I’d of chased after her down the road, or followed her as far as her fragile body would allow.

Locking the front door wasn’t enough- she’d go out the back.

Subsequently locking them both still didn’t stop her.

Gill’s smarter than her Dementia when she desperately wants something.

‘I’m just going this way,” she’d say, pointing up the hill with stubborn eyes.

After 2 miles of following her, we’d get the apologies…

“Oh alright, I wasn’t doing anything wrong! I was just walking.” She’d say after coming back around. Apologising the entire way down the hill- with regular stops because she was having trouble walking.

Yes.

She struggles to walk because of her bad back. And due to her dementia she can often forget how to walk.

I applaud her efforts to steam so fast up the hill in the first place!

“I’m sorry I just get so frustrated being in the house!”

There was no trouble for her going for walks- don’t think we wouldn’t allow it. It was just rare that she’d want to go with me.

Finding a solution.

Amidst a virus, and keeping 2 metre distances. The added stress was seeing people touching her, police without masks, and gloves, when they brought her home.

It became ritual to worship those that chased after her when she’d got out quickly. Or stepped in when clearly I wasn’t calming her down effectively.

The situation took a while figuring out how we should be responding. But eventually we discovered the power of.

“Police are arresting people for being outside.”

Although of course, we still had to ensure she wasn’t sneaking out in the first place…

Which leads up onto the doormat!

Imagine finding out that there are door mats that sound alarms!

Gill stepping onto that matt is like an order coming up to the pass. I’m able to go to it straight away.

This led to aggression- double the anxiety and psychosis episodes.

I can’t be certain what caused the psychosis.

Whilst dehydration may have played a key part in the hallucinations, consequently I believe it was feelings of severe stress, and anxiety, that excelled it.

Repeatedly explain to someone they aren’t allowed to leave the house…

On a sunny day.

I promise you’ll witness their anxiety torture themselves!

The alarm that followed from Gill stepping close to the front door was as irritating for her, as it was for me.

She’d do it all morning. And by the afternoon it became a game to step onto the matt, and run around the corner- pretending she hadn’t done it.

Eventually, I became the face she didn’t like to see.

The one that got in her way, like the strict parent telling her if she wanted to go outside, she’d have to wait five minutes and walk with me.

In the same vein we tried a volunteer walking her, which she complied to once.

Unfortunately the next couple of occasions just became feeble attempts.

“I want to go when I want too. I don’t like being told what I can do. I’m sorry if it’s frustrating.”

It certainly was frustrating.

And so much so that she cut up my hoodie up.

A little prank she played on the evil care worker maybe?

The Dementia explanation would be; Gill used to love art, and mending things. She was a creative cookie who got a job working in a window displays as a student.

So in short, she was just doing what she thought she was meant to be doing.

Naively, I assumed that’s why she’d cut the blinds on the front window too.

But after hearing a thud from the ground below my room, and seeing Gill scrambled over the floor like humpty dumpty.

I realised she was trying to escape shawshank.

“I just slipped,” she said, lying flat on the damp pavement.

This was a lie.

She’d actually climbed onto the window ledge, moved everything out to one side, and crawled her way to freedom.

“Let me help you up Gill.”

Seeing my hands reaching out to her was startling.

“No. Don’t touch me!”

I ran to get my brother, who helped. But in terms of getting her back inside- well there was nothing we could do, until she complied.

Consequences of attempting too?

A glass of water thrown in my face.

Her voice raised in panic every time my skin came in contact with hers.

“Don’t touch me!”

Lucily Alzheimer’s responded quickly to my message- and they advised the best ways to deal with the situation.

Putting them into a care home is NOT the cowards way out!

Please know- you are not selfish for deciding to ‘give them up’.

You simply are unable to provide them the substantial care that others can.

What life is it for them being locked in a house all day?

And what life is it you for, having to look after that?

Or getting your children to manage that?

It’s mentally exhausting- depressing- and puts you into negative headstates.

After experiencing what I have, you would be silly to be so selfless…

You are giving up your life, and wellbeing to look after them… And you’re barely able to do that!

Taking on a dementia patient is making a deal with the devil.

You don’t get a happily ever after watching Dementia.

Which is why, if you feel guilt, or ashamed for giving them up… Please don’t.

You’ve been so strong! But you shouldn’t have to prove your strength anymore by sacrificing your sanity!

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