The Life of a Dementia Carer

[dotinthesky]

A few months before leaving London I joined a Monday evening meditation group for gay men near Trafalgar Square. It was a lovely, welcoming space. One evening I got chatting during tea break to an older man. I told him I was moving back to Brazil soon to take care of my mom. ‘Ah,’ he said, ‘I once did the same for mine.’

‘How long did you live with her?’

‘Ten years. I was very good at taking care of her,’ he said prophetically.

It’s been now over a year since I’ve returned to Brazil to be my mom’s carer and help my brother run our family’s guesthouse. Mom has been easy to take care of; she does most things by herself. Her main struggle is remembering short-term things but her old memories are fairly intact. The main skill for caring for someone with dementia is patience. Patience with getting them through daily tasks; patience with the same questions every day, every hour; patience with them getting up throughout the night and telling you “don’t worry, it’s just me”. Every day you are reminded that this person needs your help and support in ways that you would otherwise take for granted.

I have vivid memories of my “previous life” in London. Recently, I was lying in the hammock after lunch (where I rest for an hour) when suddenly I saw myself on the Overground train. I saw the commuters around me, I saw myself taking the stairs down Camden Road and joining the throng heading for work. It dawned on me that when my mom repeats one of her memories (usually from her childhood) that’s what she’s also experiencing: she talks as if she’s back there, and it always ends with a sigh and a lament for happier times.

My mom doesn’t miss the memories she has lost; people like me are here to remind her what she has forgotten. She takes in that knowledge with some surprise then promptly forgets it. She lives in a world where she can’t remember anymore her sons’ birthdays, her favourite books or films. I once asked her what it was like and she said it was as if her life was a movie, where a piece of the reel had been snipped off and the remaining bits glued back together. She experiences the jump cut in her movie, the confusion of suddenly going from one scene to the next, but never knows what has been removed.

In 2014, when we first suspected she had Alzheimer’s, when I returned to Brazil for a year to help her get diagnosed and to save the guesthouse, I wasn’t happy. But today… I can say I am happy. Right in the middle of a pandemic, isolated in the Brazilian countryside, away from friends, with our family business temporarily shut down again. But, most importantly of all, I believe my mom is happier too – despite daily complaints (which I take to be normal ones for an elderly person).

Comments

[magic-treehouse.livejournal.com]

Do you think you'll ever move back to London or was that a different part of your life now?

[picosgemeos.livejournal.com]

I suspect it's a different part of my life now, but if I've learned anything from the pandemic is that we can't predict the future! My current life philosophy is to leave everything open as change is probable.

[magic-treehouse.livejournal.com]

Ha, yes, that's very true. That's a good philosophy to have!

[olamina.livejournal.com]

I remember my downstairs neighbor had early stage Alzheimers. I once asked her what it was like and the description reminded of the few times I'd ever been black out drunk. Like I remembered leaving a party and I knew I was home now but I didn't much remember the journey home.

[picosgemeos.livejournal.com]

In the early days, my mom used to tell me she felt something was wrong with her. Nobody thought it could be dementia eventhough she was displaying forgetfulness, and even had one episode where she woke up and didn't recognise anyone! But we put it down to stress at the time and to all the prescription drugs she took.

[naturalbornkaos.livejournal.com]

Beautifully written. I'm glad you've found a form of peace and that your mom is doing as well as she can be.

I feel like all of us are living in the past a lot more than ever before during this pandemic. And it always seems to end with "a sigh and a lament for happier times" so to have found any form of happiness in all this is an impressive achievement. I do wonder if it's, in part, correlated to making a selfless decision to devote a period in your life to caring for someone else. If somehow surrendering a part of your "self" stops you from dwelling on the egotistical minutiae that makes so many of us frustrated and miserable.

These are morning thoughts pre-coffee-kick. But this was a lovely read to go with said coffee anyway.

[picosgemeos.livejournal.com]

Thank you. I think you're right - it's completely down to surrendering to what life has handed me and being "of service" to someone else, instead to myself. Though, bizarrely, I now have the most time I ever had in my life to writing and reading! It feels at time that because I accepted life's flow and went with it, the space opened up for me to be happy and focused on things I really love.

[naturalbornkaos.livejournal.com]

Weirdly, I read somewhere else recently that asking yourself "how may I be of service today?" is a positive way to start every day.

I can totally see how that work out too, as it has for you.

I need to figure out a way of making my own life more positive like this - there's just a huge difference between being "in service" and being paid to do something for 8 hours a day that's not really of any great service to anyone.

[picosgemeos.livejournal.com]

Maybe one way to start it is to figure out some small thing you can do each day that is of service to someone. I've started writing letters to people, for example, and someone has already told me it really cheered them up as they received it just as they got the news their mom had passed away!

Small gestures sometimes have a huge impact.

[turnintobirds.livejournal.com]

I love this idea. I've been sending people random postcards or (tiny!) gifts in the mail, or going above and beyond when packaging up people's eBay purchases, throughout this whole time, but I might get more intentional about it!

[picosgemeos.livejournal.com]

That sounds lovely. I bet if you could have insight into the impact of how all the postcards and gifts are received, you'd see how it made a difference to some people. :-)