There are so many questions you want to ask when having a baby and often, your mum is the first person you turn to. They’re full of love and guidance. But, heartbreakingly, for Jacqui Gillie that isn’t an option.
Her mum was diagnosed with Alzheimer’s, and although she is still here, her mind isn’t, and what Jacqui describes feels like a type of grief. This cruel disease has taken away their future together, just when she needed her mum the most.
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I remember like it was yesterday, the day my mum got diagnosed. I got home from work and my dad told me that they had received her results. I sat down on the sofa in my childhood home and the words ‘It’s Alzheimer’s’ hit me. Mum cried. I cried, then I ran up to my room like a petulant child because I realised very quickly she needed me to be strong and in that moment I needed to not be.
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I was 24 and living at home after the breakdown of my marriage. To say I wasn’t having a good year was an understatement. Luckily, I had met someone and even though I offered them an out to this awful situation, he has stuck by my side ever since.
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Fast forward just over a year and it’s hogmanay 2017. I’ve been ill for a few weeks and I just can’t shake it. Something in me says just do a test, it’ll be negative but at least you’ve ruled it out. The test was positive, I was pregnant. Almost simultaneously the morning sickness started. I phoned my dad almost immediately.
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By this point my mum no longer had a mobile of her own. My dad had already retired for a mixture of reasons. Some being so they could have some retirement together but also because mum had started needing a bit more support. She could no longer drive and to be honest she no longer went anywhere alone really.
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It didn’t take long for me to realise that nothing about my pregnancy was going to be easy but I hadn’t anticipated how hard not being able to ask my mum questions would be. I could phone and talk to her about it but the reality was she often couldn’t answer. Dad wasn’t much better but he tried. I know it sounds silly but when I went to buy nursing bras or pick a pram, I would have liked her input. Maybe it doesn’t sound silly to those who have that option. Even just ‘How many baby grows do you think I’ll need?’ or ‘Will you come and stay when the baby is born to help?’. None of these were things I asked or spoke of. Many didn’t even cross my mind at the time.
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I remember talking to other expectant mums at classes or in waiting rooms, talking of their mum doing this or that, coming to appointments with them or that they would be there at the birth. I found myself always sitting thinking ‘Well, lucky you,’ the jealousy unable to simmer down.
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My daughter was born in what could be described as the most horrendous of circumstances. No birth plan would have my birth written on it. My mum and dad came and visited a few hours after Charlotte was born. I can’t really remember the visit thanks to the very strong painkillers but I do have a picture of my mum holding her granddaughter that I will cherish. This was the first and last moment that she was truly comfortable with her granddaughter.
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After we got home it was a few weeks before mum and dad managed to visit. They had given us space to settle as a family but I was struggling. Not just because I didn’t have my mum around but also thanks to my inability to slow down – I had to have an emergency Caesarean after all!
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Mum kept calling Charlotte a little boy, she was getting confused with their neighbours’ baby boy who was a few weeks older than Charlotte. The first few times I was ok about it but it soon started to annoy me and I couldn’t help but get snappy. Why couldn’t she remember that I, her daughter, had a baby girl but she could remember that her neighbour had a boy! This has since continued and although it often bothers me, it seems so incidental really – although Charlotte wears a lot of pink and dresses when granny visits.
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The first few months of motherhood are a whirlwind for anyone. The first time your child is ill. Nights and days could be any way round. Visitors desperate to see the newborn are greeted by zombie-like parents. I don’t know what it’s like for others but I think I always had this image of my mum swooping in after I’d had a rough night or day, to come and scoop up the baby, send me to bed for a couple of hours and when I woke up the baby would be asleep and all would be better. Maybe I’m wrong. Maybe it’s a fantasy but I’m sure that mums all over are delving right into granny duties. Are cooking hot meals and stocking freezers. Washing tiny baby clothes, return ironed, folded and ready to be thrown up on all over again.
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By this point I was probably seeing my mum and dad once a week. My mum would sit on the couch and have a cuppa while my dad would play with Charlotte on her jungle gym or rocker. Mum would say how nice ‘he’ was, tell me I was good and eat another biscuit. It had become our normal. Sometimes she would have a cuddle but not very often. She would panic that she didn’t know what to do and soon dad would take Charlotte off her for his cuddle. There was no swooping. If anything, visits were stressful. No nappies were changed by anyone bar me and I certainly did not get any chance to lay my head down for five minutes, let alone 20.
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I decided that for New Year we should go down and visit them for a change. I think I had hoped in her own surroundings mum might find things easier. I’m not sure how long we were there but I don’t think we hit the 24 hour mark. A combination of factors but it wasn’t an easy visit. We did manage to go and visit the local minister about Charlotte’s christening and leave her with mum and dad but it was clear dad found it hard. Mum did play with Charlotte a little but it was never unsupervised. It sounds bad but we were all living in fear of her dropping Charlotte. Seems silly now on reflection because she was definitely more than capable.
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The next few months are a bit of a blur. I organized the christening with a little help from my dad. I don’t have a photo of them with Charlotte on the day. In all honesty, my memories of the day are in the kitchen sorting out food and standing at the front of the church preoccupied. My partner’s family had travelled far and wide to be there and I remember distinctly making them all aware of my mum’s Alzheimer’s. I wasn’t embarrassed but she did have a tendency to be a little inappropriate and I wanted the day to run smoothly. To be honest I’m not even sure that she tried to speak to anyone.
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I can’t remember (funny that) the last time I had a conversation with my mum and she knew what I was saying or I had any idea what she was trying to say. I may make jokes or pretend to be light hearted about it all but it’s a big fat cover up. I’m heartbroken. I struggle everyday. Sometimes you just wanna phone and go ‘she has a weird rash, should I phone the doctor or do you think it’s just a dry bit?’ or ‘Mum, she’s been up all night, please come round so I can sleep or sit down even’.
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The visits became fewer again. I was busy trying to keep busy. Dad was busy trying to claim some kind of retirement with trips away in the motor home. We did try a family holiday before the christening but I genuinely believe it was that stressful my mind had blocked it out. I felt like the maid for four nights and cried most of it.
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There came a point when mum no longer understood Charlotte’s happy giggles or upset cries or frustrated babbles. She does a little now that they are more coherent but when they all sounded the same they just made mum cry. Now, when Charlotte is getting told off, Mum cries and says ‘no’, as if I’m being nasty – I generally don’t raise my voice or shout, it’s more of a face-to-face you did wrong and you’re having a time out. Mum doesn’t understand the whys. She just doesn’t like the upset.
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I went down for a weekend just me and Charlotte not long after I went back to work. Charlotte cried for two days unless I held her. Dad was annoyed that I was giving in to her crying but I could see what it was doing to mum. Two days of giving in was better than watching mum on edge the whole time.
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I’ve not been down for a visit since. I find it difficult. I want to see them and they come to my house. In fact we moved and they can now stay and that was an important factor in choosing our house. I find I’ve become less hands on with mum. Her care needs are more and dad says he can handle it but the reality is he shouldn’t have to.
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I often feel like the disease isn’t just taking my mum from me but my dad too. They are a two for one deal now. No Punch without Judy. He gets occasional respite and we take these opportunities to spend time together but he misses her and you can tell he’s lost.
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On one of their more recent visits she didn’t know who I was. I had known she was worsening but the stark reality was horrendous. When she realised, she cried. She didn’t know why she was crying, truth be told, but she knew something had slipped away. I had to go and gather myself, not unlike the day she was diagnosed. Dad offered to leave but he needed the break so they stayed overnight.
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It took me back to a time not long after she was diagnosed. I was standing in a shop I used to work in, talking to an old colleague. I told her of Mum’s diagnosis and her response was ‘But that’s what you all thought it was anyway’. The naivety astounded me. It was as though I wasn’t allowed to be shocked because the thought had previously crossed my mind. It was as though my mum’s disease surely wasn’t that bad. My mum’s disease is that bad. It is slowly stripping away every part of the woman that raised me. Not only is it taking away her memory but it’s taking away my memories. She doesn’t remember her granddaughter’s first birthday and she probably won’t see her first day at school. She won’t help me make nativity or book day costumes. She won’t be the mother of the bride when I marry the father of my child.
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I’m strong because what choice do I have? People from the outside might think ‘But you’ve never needed her’, they don’t understand the reality of not being able to need her. It’s true we didn’t have a great relationship when I was a teen but nothing prepares you for the loss of your future. The plans you had. I thought she’d always be there no matter what. In body she may well be but her mind is lost at sea.
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HELPFUL RESOURCES:
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** ‘But why isn’t my family like everyone elses?’ is one of the tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.**
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FANCY SOME MORE?
– Read Vikki Muston’s list, This is Grief. Vikki lost 10 people in two years and her capacity for survival is truly remarkable.
– Read Life After My Mum Died, whose writer, Sally Wyatt, heartbreakingly explains how talking more about death can help us through grief and allow us to keep living.
– Listen to comedian and Griefcast host Cariad Lloyd on Honestly podcast, as she opens up the important conversation around loss.
– Listen to Caitlin Moran talk Womanhood on But Why? podcast. The author and journalist explains how middle age can be so freeing, even when you find yourself sandwiched between caring for children and ageing parents.
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OR HOW ABOUT WRITING A LIST?
Find submission guidelines here. All writers and topics are welcome, but we are currently particularly looking for lists on:
– Internet trolling
– Prison
– Pain killer addiction
– Extremely large families
– Estrangement
– Lottery winners
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