I wasn’t going to write anything today – for one, I feel utterly exhausted after a heavy weekend and then a gig with my band last night in a pub in Boroughbridge and for two, I don’t want to write too often and risk becoming stale in my thoughts or musings.
However, I saw a post on my lovely sister-in-law’s (The Gorgeous Natasha’s) Facebook page this morning about an article on how to help children cope when a family member has dementia ( I have put the link below). Of course, this is as relevant to Natasha as it is to me and of course Emma too. Mum is Granny to all of our children, all 8 of them, who range from the newest member of our family, Annie (Emma’s youngest), 9 months to Oliver (Natasha’s eldest) at 12. Annie will not ever know her Granny as she once was, whereas Oliver and some of the other grandchildren, my eldest two included, will have very clear memories of my mum as an active, involved granny and the change in her is so profound it is sure to have an impact on them somehow.
I read the article, it is by a lady called Pamela Maloney, who works for a company called Senior Living Residences and is a contributor to the AgeRight Blog. It was a nice article and it gave good tips on how best to handle a visit to the dementia-suffering relative, including limiting the visit to 15 minutes as an idea, and to not argue with the sufferer and to “relax, smile and speak clearly.”
My children have been aware of Mum’s steady decline and my worries about her mental health for 12 months now, since we started to get very worried last Easter at her behaviour and mental state. They have never been shielded from it, as much as I would have loved to wrap them in cotton wool, I have had no choice but to take them with me on my many visits to Scotland over the past 12 months and they have been witness to Mum’s odd behaviour on her many visits to stay with me last year. Mabel, at only 2 doesn’t notice and she is the first to run to Granny when we arrive at their house, or when we arrived at the hospital to visit her over Christmas. She runs towards my mum and launches herself at her legs, wrapping her arms around my mother’s knees. This always brings a smile to my mum’s face – I am not entirely sure she knows who this little girl is, but she is a small child and she is cute and the joy of her sparkly, vibrant youth is reflected for a moment in my mum’s expression.
Martha is very sensitive and writes me notes, telling me how sorry she is about Granny and she writes notes to God, asking for Him to help her be “cind” and to help her get better at football, and to help Granny. Archie is quiet about the whole thing, but is weirdly fascinated by it. I suppose he will have the clearest memories of his granny, being my eldest; spending time with her and my dad in their school holidays, being taken to museums, to Edinburgh Zoo, to play centres, the park (every day), playing tennis with both of them and Mum helping him with his golf swing (she was a fabulous golfer). Always learning, always doing something productive and fun. At times, when I have been having a strange, disjointed conversation with my mum, I have looked up to see Archie standing nearby, hovering by the door, listening, trying to make sense of what is happening. He never looks worried or stressed, he simply looks interested and fascinated.
Pre-dementia, my children used to groan at how I was inconveniencing them, when I’d tell them to put their books down, or turn the television off, as we were calling Granny and Papa. Now, I have noticed, they don’t whinge at all. They are now used to my urgent nods and furtive glances at whatever is making noise (be it the TV, radio, Mabel’s annoying Peppa Pig piano or Archie practicing drums on my cooking pans) and rush to turn things down, or off so that I can hear my mum and try and work out what she is trying to tell me. Her voice is usually quiet now, her train of thought so confused it is impossible to follow her attempts at a conversation. The phone inevitably becomes quiet, both of us lost as to what to say – that is when I put the kids on. “Martha’s here to say hello, Mum” and Martha will chat away about what she has done at school that day, before passing the phone to her siblings. The effort my two elder children make on the telephone with her each night, trying to keep a conversation going, trying to engage her in their lives and the way Mabel will run towards her for a cuddle when we see her – always makes me very proud.
Martha asked me recently about Granny and why this is happening to her and “will she get any better Mummy?” In fact, she asks about Granny a lot and I never discourage her enquiring questions, I think this is her way of coming to terms with it, of coming to terms with why I get upset and the sudden and dramatic change in her beloved granny. I explained to her that our brains have millions and millions of wires and poor Granny is struggling as her wires are getting mixed up and tangled together. She knows she needs to boil water to make a cup of tea, but her wires tell her to put water into the tea pot and not the kettle. She knows she puts underwear on every day, but the wires in her brain don’t tell her that these should be underneath her trousers. She knows the potato peelings go in the bin, but her brain does not recognise the bin anymore, so the peelings can end up in the clean washing basket, or in the dog’s bed. There is seemingly no rhyme nor reason for why things end up anywhere anymore. Granny’s wires, I explain, are not connecting up right, the messages are getting lost and not getting through to the parts of the brain they need to. And no, Martha, on top of all that, Granny will not get better.
“That’s very sad, isn’t it Mummy?” she says, reaching over to hold my hand. “My God, yes!” is what I want to shout. “Sad! Cruel! Unfair!” I want to scream my pain at every elderly couple I pass in town; couples in their 60’s who are smiling at each other, enjoying each other’s company, having lunch out, or perhaps they’re on a shopping spree. I want to stop the elderly ladies I see at the gym each day – the ones who are chatting with friends or doing an aerobics class in their brightly coloured lycra – I want to make sure they know how lucky they are. Women I hear moaning at the supermarket checkout about the weather, about having to buy a plastic bag for 5p, about the use-by dates on the bread. It is all so trivial! I want to cry every day. I want to rewind the clock back and have another day with my mum. I want to step back through the photographs and be with her again, enjoying her company, her sense of humour, her energy and love…..the fun we used to have. I want to tell all of this to my daughter, one day perhaps, when she is older I will, but for now I don’t. Instead, I take a deep breath and nod. “Yes, darling. It is so very very sad” and I try and smile, giving her hand a little squeeze.
I don’t know whether I am dealing with this in the right way or not. I don’t know how, whether or even if my children are being affected long-term by what is happening in our family right now. Pamela Maloney believes that a 15 minute visit is a good idea, but how can I do this when my mother lives 200 miles away? How can I limit our visits so as not to traumatise my children and not to overly agitate my mum? She advises children to “relax, smile and speak clearly” but when I am visiting with my kids, sometimes it is like world war bloody three with Mabel screaming because one of her elder siblings has taken something off her, whilst the other two wrestle on the floor, starting off play fighting which gets rougher and rougher until the inevitable tears as one of them is hurt. Usually the naughty step makes an appearance at some point and we get occasional door slamming, frequent eye-rolling, shrugging, high-pitched screaming and then the calm and therapeutic hugs, kisses and expressions of remorse. This is just life with children isn’t it? How can I make them suppress their childish, playful, mischievous ways for the whole 3 or 4 day visit, making them be calm and smiley and clear in their speech at all times? I can’t!
So, after reading the article and knowing that the Lovely Natasha is concerned about the impact of Mum’s illness on her children I have written my own list for those with children and a family member with dementia. A guide to what I think has helped and is helping my own children deal with this horrendous, shitty disease and has helped them to negotiate the past 12 months with remarkable strength, resilience, kindness and love.
You have to. It helps, it really does. Sometimes we will put the phone down after a conversation with my mum and we will have a little chuckle or a smile about what we talked about or about how she misinterpreted something. It doesn’t mean we don’t love Granny, and I am very careful that we are respectful and we never laugh at her, but at the disease, the illness, the faulty wires in her head. It is those misfiring wires we laugh at, and I believe laughing at them, somehow reduces their negative impact on us.
2. Be open
At first, I was conscious of not letting my children see me get upset. I remember as a child finding my mum crying and feeling so upset by it – surely she was superhuman? Surely she could cope with anything in life? If she was crying, did that mean something really bad was happening? Was I safe? And I am sure these things crossed my kids’ minds too as they first saw me lose myself to my emotions, engulfed in my grief and sadness. But, then they also saw me come out the other side of that devastating moment. They saw that I had broken down, but that I got up from that fall and carried on. And, we talked about it, about why Mummy was so sad that particular moment, and that I would be sad from time to time as Granny is my own mummy and I miss her. I think my kids have benefited from seeing that I am not strong all the time, that breaking down and showing emotion is not a weakness, that I love my mother immensely and that my sadness is a reflection of how her illness has upset me. I think it says a lot about how important she is to me and how much Granny is loved.
3. Remove the fear
It was a shock to the kids when they first heard their granny telling them that the man over there was not their papa. They came and told me, looking a little shocked but almost smirking, as if it was a joke that they weren’t sure how to react to. I explained that she was confused and not to worry about it, not to be scared, she was still Granny, but her brain was getting mixed up, that she had an illness. “Can you catch it?” Archie asked me.
“No Arch, you can’t catch it.” He looked satisfied at that and they both ran off to play in the garden with their papa.
That’s it. Three things. I think if you are open and honest with your children, try to remove any fear they may have and try and laugh about it when you can, they will learn that the only really important thing is how much we love Granny and what we can do to help her and Papa.
As Pamela Maloney also stated in her article “It’s not uncommon for a person with dementia to appear happier and more engaged after a child enters the room.” I have seen this with Mum and also with other patients in her hospital ward over Christmas. When I visited with Mabel, the other patients came to life and wanted to talk to her, give her sweeties – one lovely old lady gave her a pound coin for her piggy bank. This lady could no longer talk, but her husband who was visiting explained that she thought Mabel was beautiful and she wanted her to have this coin, as he pressed it into her tiny hand. Monkey Mabel was delighted!
So, I will continue to expose my children to this terrible disease. We will continue to talk about it and try to rationalise it, to try and remove the fear from the situation for them. We will continue to try and show my mum how much she is loved and try and put some joy into her day and if that means my kids being exposed to their dementia-riddled Granny, then bring it on! I think, ultimately it is good for them and will help to make them more rounded, more emotionally intelligent, more caring people who know the real value of love. I hope so anyway.