To tell or not to tell

I had intended to share this blog (initially written last year) on Friday 1st September, to mark both the start of Alzheimer’s Awareness Month and the start of my maternity leave. But 1st September ended up being a far more significant date as it’s the day that our lovely Ma passed away. As anyone who read the last blog will know, Mum took a turn for the worse in May and moved into a nursing home. Despite excellent care she never recovered and had been going downhill all summer. When Mum got yet another chest infection last week she just wasn’t able to fight it off and she passed away peacefully in the nursing home early last Friday morning.

The theme of this blog seems especially pertinent this week – both as we have been faced with the seemingly never-ending, and always painful, task of telling people that Mum has died, and as we have taken great comfort in the words of condolence and support from far and wide as the news has spread. I am especially grateful to those who have shared their experiences of losing a parent before the birth of their own children and how they have kept the memory of those grandparents alive for their children. So I’m sharing this now as a tribute to Mum, who was always a good talker, and because somehow the impending birth of her first grandchild has escaped Facebook and wider awareness so it seems a good time to share the happier news as well as the sad.

To tell or not to tell?

I told Mum several times that I was pregnant. Way earlier than I told anyone else. She’d always wanted grandchildren so I hoped it would give her some pleasure; not that long ago it would have made her day/week/year. And I knew I could count on her to keep a secret as forming sentences and having conversations has been beyond her for a long time. But sadly comprehending the news was also beyond her. At least I prefer to think it was that rather than that she understood the words but not the significance of who was saying them; I think any pregnancy would have been happy news to my old Mum regardless of whether it was her grandchild or not. But I got no reaction at all. The words failed to register.

So then I held onto the hope that when the baby was born she would express the delight she usually does for any small child or baby that we see out and about. And that even if she didn’t appreciate it was her grandchild she would take pleasure in having a baby on hand for regular cuddles.

But then, at 11 weeks, just as we were building up to a scan and sharing the news more widely, we had a miscarriage in May 2016. And the first person I wanted to tell? My mum. She had a miscarriage, she was a nurse, she’d know what to say and do. But that Mum has gone. So then I found myself grieving the loss of our unborn child and once again the loss of my Mum. It’s one of the cruellest aspects of this oh-so-cruel disease that the grieving process is so drawn out. You mourn for someone piece by piece. They are here but not here. You learn to love version after version of the same person, ever less recognisable but nevertheless connected. And there’s always some event or moment when it hits home that another piece has gone and you need to readjust once again.

Too much to mix miscarriage AND dementia? Maybe. But in 2016, a decade on from Mum’s diagnosis, I was thinking a lot about the dilemma of ‘to tell of not to tell?’ Mum was adamant she didn’t want people to know, she didn’t want their sympathy and worried that they would treat her like a half-wit if they knew. It was like she was ashamed of her diagnosis. In 2006 early on-set Alzheimer’s wasn’t in the public domain in the way it is now, we didn’t know of anyone else of 60 who had it; it was an old person’s disease. So we told hardly anyone, not even close family. And for a while that was fine. Mum developed coping strategies and covered her tracks. But then she started to struggle and increasingly withdrew. People could tell something wasn’t right, but without knowing what it was they didn’t know how to help or adjust. And I found it really hard not being able to be open with family.

When we finally told people, without exception, they were understanding and considerate. Life got a lot easier. And one of the nicest things about Remembering Not to Forget and sharing our blogs has been the number of people who have made contact to say “I’m going through this too”; “thank you for sharing your experiences, I thought I was on my own”. Others said how it had helped them understand dementia for the first time. Having worried about breaking the unwritten rule of sharing only the happy things I haven’t once regretted it.

But when I miscarried I didn’t want everyone to know. It was none of their business. I didn’t want people to feel awkward or worry about what to say. I certainly didn’t want people second guessing whether we were trying again. Yet as we widened the circle of those who knew, more and more people shared their own experiences. And that helped.

So it made me think again about the purpose of this blog. Grief is private, I get that. While I wrote this shortly after our miscarriage last year, as part of processing my thoughts, I’ve waited over a year to share it. Things look a little different now; our second pregnancy has gone better (even getting a ‘that’ll be lovely’ out of Mum on one of the many times of telling her the news) and all being well Mum’s first grandchild will arrive before the end of September. But grief can also be isolating and it shouldn’t be. Sad things happen. To everyone. And sometimes it’s good to talk about them.

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