Caregivers: To Blog or Not to Blog?

Have I been letting people down? Yesterday, I received a kind message about this blog. I haven’t blogged in a long time for various reasons, but this message reminded me of why I started it in the first place. It raised the question of whether to continue to blog?

For those new to my blog, I have cared for my mother with Alzheimer’s for the last nine years (I think!). It’s been a long time, and you can read more about our background by clicking on this link to our ABOUT page.

I intended to share our journey, what we experience, the highs and the lows. I hoped that sharing it would help other carers /caregivers in the same position, hopefully, feel less alone and united being in the same position. It helped give me an outlet for my own feelings as well to say whatever I was feeling.

I wanted my writing to document our path, share our learnings, and growth as we went through our dementia journey.

Somewhere along the line, things became more complicated, and it stopped me from blogging. It didn’t stop me from writing completely, but it stopped me from sharing our progress. I continued to write some blogs but never finished them or published them.

Why? What was I worried about?

Sharing too much?

Anyone who starts a blog about a loved one with dementia will struggle with this – consent and crossing boundaries. As soon as you share something on social media it’s out there for eternity and can’t be taken back however hard you try.

Dementia is rarely shared or discussed in my culture, and even the term doesn’t exist in our language. So I knew from the outset that I would be breaking the boundaries and taboo of sharing our dementia journey within my own circle. But I also knew there weren’t any references for me from my cultural standpoint and decided to start one myself.

I’ve written about deeply personal issues about myself, the stress and fears that I have, how mum’s Alzheimer’s affects her day to day, how her mood changes, how happy she is on most days and the anxiety she experiences on other days.

There is so much more that I want to share, but I’m having trouble balancing the truth with sharing too much. With sharing the frivolous with the important stuff. Sharing family disputes, deeply personal religious beliefs, cultural norms and how dementia really impacts us against family privacy. The reality is I’m not the first to go through this but does it help to share my experience, or is it irrelevant?

Do I continue and bear all or refrain from blogging the parts that impact us the most? I know what type of person I am and know that I can’t do that. I need to share everything.

That leads to the next question.

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Is the Blog good enough?

I’ve always struggled with writing. Don’t get me wrong, I’ve loved writing, but I’ve always been criticised for it, from being in the bottom band of the English language in school to going to University.

It’s that thing from your childhood that you can’t forget because you’ve been mocked for it (in my case by a terrible teacher). It took me a long time to learn to shrug it off. But as I went through a bad spell this year, it started to get me down. Is my writing helping, is it understandable, relevant for others or am I just living in this personal bubble?

So that brings me back to my message last night. Such a sweet message from a fellow carer/caregiver asking to share my blog in one of her publications.

Katy’s message read

Can I add a link to your excellent blog? Would you mind? …. its so good I would like more people to get their eyes on it.

I was touched as it meant a lot coming from another unpaid carer /caregiver and one of the founding members of the We Care Campaign. A volunteer-led campaign founded in 2018 campaigning to achieve “better recognition and appreciation for unpaid carers”.

Well worth joining their campaign if you haven’t – click here for more info We Care Campaign

Katy’s kind message hit at the right time for me to really hear it, to reflect and realise my blog was good enough. It’s amazing how a few kind words can lift you and revitalise you.

Blogmas

So I’ve set myself a challenge for Christmas, to get back to doing what I love, and I’m hoping you’ll keep me accountable. Blogmas is a blogging tradition where bloggers share a new blog every day in the run-up to Christmas. I’m going to be more realistic and set myself the goal of creating a new blog every other day, about everything new, things I want to share with you, tips and help that might be useful, update on mum’s Alzheimer’s and her diabetes journey, and how I’m feeling now in my caregiver /carer journey.

So hold me to it. This is my first blogmas post! Here we go!

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