“Mummy, what on earth is granny doing?” – Talking to the kids about dementia.

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So, talking to friends about mum’s dementia is hard (see previous post) because one is always trying to put a positive spin on things but children see straight through that kind of hogwash.  They know if you’re not being straight with them so you have to tailor your explanations accordingly.  To a certain degree my kids have absorbed mum’s behaviour and accepted it as a normal part of family life but there are certain things that cannot be ignored and questions that cannot be deflected.

For example:

“Mummy why is granny still outside, sitting in her car in the snow?  I thought she left ages ago?”

Correct answer = “She’s just trying to remember what to do and the fact that it’s snowing has made things a bit more confusing”

Wrong answer = “I don’t really know but I’m studiously trying to ignore the fact that she IS still outside, with the windscreen wipers batting furiously up and down and the hazard lights on, as she tries to operate every button and lever in the car without starting the ignition properly.  The reason I am trying to ignore it is that I do not want to face up to the fact that she seems to be unable to drive safely any more.”

Mummy why doesn’t granny cook with us / read to us / take us to the park / play with us?

Correct answer = “Granny would love to do all those things and in fact she used to do them all really well, especially the cooking, but she finds them difficult now because she gets a bit confused and the part of her brain that has learnt those things isn’t working very well any more.”

Wrong answer = “Granny just can’t be arsed.  She’s not interested in doing fun stuff any more.  Now bugger off and let me watch Jeremy Kyle.”

“Mummy why does granny have to look after us today?  I don’t like it when she looks after us.  Could our other granny do it today?”

Correct answer = “Granny loves looking after you and spending time with you.  Please try to be patient with her.”

Wrong answer = “I’m completely devastated that you’ve said that because she’s my mum and I want you to love her more than anybody else, even though the rational part of me can tell that spending time with the other granny must be much more fun.  I also have significant reservations about the safety aspect of leaving granny in charge of you all but the fact of the matter is that I need to go to work and she’s the only person around who can help with childcare today so you’re going to have to lump it.”

My kids were very young when mum first started showing signs of dementia (indeed one of them had not even arrived) and I naively assumed that they would just grow up thinking that this was how grannies behaved – if they had never known any different then surely they would not be distressed by her sporadic confusion and odd outfit choices.  And indeed, for some time this seemed to be the case.  My youngest two still appear to be fairly sanguine about the whole situation – we’ve always just stuck with the phrase that this granny was different to their other granny and that she couldn’t do the same things.  The ‘other granny’ (my mother-in-law) happens to be the most capable, sensible and down-to-earth woman one might ever encounter.  As a result she is probably the polar opposite to my mum in her current state.  She is one of those women who keeps herself busy at all time, physically and mentally.  She makes chairs, she knits, she reads avidly, she travels, she volunteers for the National Trust, does a weekly shop for the visually impaired, is a school governor AND she still has masses of time for my children.  It breaks my heart to say it but in the grandmother stakes my mum just cannot compete.  I know they love mum because she’s their granny but their relationship with her is massively constrained by the limits of what she can and cannot do.

A few months ago I saw a work colleague who is the same age as mum out one day at the shops with her granddaughter.  The little girl excitedly told me that the two of them had been to Wagamama’s for lunch and they were now going to have a manicure together.  I nearly wept when I got back to the car.  My mum, as she was, would have LOVED that.  And although I could probably orchestrate some complicated scenario whereby I take my daughter and mum to a nail salon so that they could share a similar experience it would absolutely not be the same.  In fact, the difference would be so vast and noticeable that I would start to feel acutely depressed, my daughter would feel embarrassed and my mum would feel the same level of emotion that she would have if I’d left her at home watching Bargain Hunt.  My sister and I try to have ‘life enhancing experiences’ with mum including shopping trips and spa days but they are exhausting enough without trying to factor small children into the equation.  After all, there are only so many people you can keep an eye on in an attempt to stop them walking into the road / falling in a swimming pool / overheating in a sauna / getting lost in the underwear section of M+S.

So, aside from the obvious drawbacks to having a grandmother with young onset dementia, are there any benefits?  Short answer is an emphatic NO.  However, if I was going to force myself to drag out a longer and more measured  response I would probably talk about the positive aspects of children caring for family members.  I’m sure it’s one of those things that would be annoyingly described as ‘character building’; learning about supporting those who are having difficulties, sacrificing one’s own fun in order to help a loved one, gaining an understanding of responsibility and…. (no, it’s not working, this all just sounds terribly bleak and I probably need to just return to my original short answer). I hope that somehow this experience will help my children to become lovely, kindly members of a more caring and civilised society, although admittedly that may be quite a high expectation to place on the shoulders of seven year olds.

My son recently completed a homework task about perseverance; he had to write about people who had persevered at something and succeeded.  His first example was a famous rugby player and the second was my mum.  Before you think “Ahhh, how sweet, what a lovely young man” let me just tell you what he wrote:

“My granny shows perseverance because she has deemensha and she can’t do some things like running a bath and she doesn’t get cross when somebody shouts at her if she does leave the taps running.”

Can I just clarify that nobody has ever shouted at mum for doing something wrong.  Never.  Not even in the face of extreme provocation.  So how do you explain that to the teachers?!  We didn’t want to force him to correct the sentence (he conceded that in fact he had never heard anybody shout at granny) because the idea behind it was so  well-intentioned but we were mortified when he handed the homework in.  Luckily his hand writing is so atrocious that the words were barely legible – hopefully his teachers never fully appreciated the content.  Either that or I will soon be having a serious conversation with social services.  (I’m fully aware that safeguarding of vulnerable adults is not a business to be taken lightly by the way – just in case any internet trolls, or indeed the GMC, are reading this)

Clearly each child interprets the situation in a different way and responds accordingly.  Mum is still a regular fixture in my children’s lives and while she is no longer ‘a help’ neither is she a hinderance.  I hope that they are learning something positive through her diagnosis (although, as demonstrated earlier, I’m not entirely sure what) and that she gains something from being with them.  After all, mutual benefit is as good as it gets in a family unit.  We love each other, we’re there for each other, come what may and if my children see and understand how supportive families function then maybe that’s the little silver lining I need.

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