Dementia's forcing me to mother my own mum - and it's breaking me

Journalist Claire* lives in Sussex with her husband and their two children, aged 14 and 10. As part of Yahoo Life UK's accounts of motherhood to mark Mother's Day, Claire shares how it feels to see the mum she knew and loved slowly disappear, due to dementia.

My mum is no longer my mum. She is lost to me as a parent, even though her heart still beats. It is something that happened gradually – and hit me like a ton of bricks, all at the same time.

It was one day in late 2020 when this realisation first began to dawn. Mum had been getting more forgetful and repetitive for a few months, but my stepdad, my husband and I were still at the point of being unsure about whether this could be a sign of early dementia, or just one of the perils of getting older.

At the time, I was in the trenches of homeschooling with my son and daughter, then 10 and six. We were staying with my mum and stepdad – who live a trek along several motorways away from us – for the week.

While I worked and my stepdad helped my son with his long multiplication, I asked my mum if she would sit and listen to my daughter read a book. Somehow, this simple act of support for me and her granddaughter seemed beyond her, and she got up and walked away, leaving my daughter to recite We’re Going on A Bear Hunt out loud to an empty room.

Then, the following day, my life imploded when I was told my job was at risk of redundancy. I went into a sheer panic, sobbing as I told my mother, the woman who had always said the right thing and had the wise words to soften any blow. Yet, she simply told me that I should stop crying or I’d upset the children. I felt numb and so disappointed. My mum had always been one for talking about anything and everything, in order to work things through. Now, she had nothing.

After that visit, I noticed she was calling me less and less often. When she did, she was going through the motions – "How’s the weather there? How are the children?" – not really listening or engaging with anything I had to say. The following year, she didn’t even call me on my birthday.

Mothering my own mother

By then, it had become more and more apparent that we were dealing with the long goodbye that is dementia. She refused to go to the memory clinic and so has no diagnosis. But gradually she became less, diminishing as a person. My mum was disappearing in front of my eyes.

I stopped even attempting to talk to her about the sort of things a mother and daughter would discuss – everything from my first signs of perimenopause, to the challenges of having my first tweenager in the house, to asking for our family Christmas pudding recipe.

Everything, aside from talking about the bloody weather, was left unsaid. Instead, I would turn to my friends to seek counsel, and they would lift me up and carry me like the truly wonderful souls they are.

I’m also an only child (something I’ve always had a slightly resentful sadness about) so, while I’ve always talked to my husband about what I was experiencing, there wasn’t, and isn’t, the comfort of anyone to truly share the grief of this loss with.

As Mum’s condition has deteriorated, her needs have inevitably increased. And so, while I am now in the trials of the teenage years with my eldest and the tweens with my younger child, I am also, in essence, dealing with a toddler again. On Mother’s Day this year, I will be doing the mothering for both my children and my own mother – the ultimate generational sandwich of parenting.

Mum is not the easiest person to be around. No one with dementia is. She’s particularly awkward and defiant and refuses to do anything to help herself in any way. She never wants to take her meds and has to be cajoled daily, reminding her that it will help make her feel better.

A different person

Mum doesn’t have any interest in eating and so has to be given food that is easy to digest and will leave most of what’s on her plate. She never wants to drink water either, and will slam down the glass in a strop saying she does not want it when you tell her she is thirsty and needs hydration.

She used to be a clean freak, but now refuses to shower and never wants her nails cut. She used to keep herself busy all day, but now she doesn’t want to get out of bed in the morning, and spends all afternoon staring at daytime TV.

Mum also kept a perfect house. Now, I find myself stripping beds and running around with a bottle of bleach whenever I’m there and can find a spare minute in between speaking to doctors and social workers and trying to give my stepdad a rest from cooking the dinner. (I'm not trying to give myself hero status, he does the bulk of caring.)

I do what I can, while also Facetime-shouting at my kids to do their homework and my husband for feeding them pasta pesto for the fourth night running. I juggle caring for Mum with ordering new school uniforms, booking birthday parties and doing online food shops.

I feel torn in two, and, wherever I am, there’s a part of me that feels I ought to be somewhere else. Ultimately, I want to be with my children, doing the natural parenting role, the one that brings me all the joy, amidst all the getting annoyed about muddy football boots traipsing through the hallway.

Guilt, sadness and frustration

Parenting a parent is not the natural order of things, and, when they have a condition like dementia, carrying out this reverse role can feel upsetting, even traumatic. You also feel guilty because you get cross and frustrated with them, much like with a young child.

I often feel emotionally detached, which is probably a defence mechanism because it’s easier to feel frustrated than it is to just feel deeply sad. There are times when the emotions get the better of me though, like when this woman who used to be immaculately turned out at all times needs help to brush her hair and can't fathom how to put make-up on. The time she smeared her face in fuschia pink lipstick, a shade she would baulked at before, absolutely broke my heart.

With dementia, you start to forget who they used to be, because all you can see is what’s in front of you. I miss the mother she was when I was a child, the one who made things, from a great lasagna to the costumes for the shows I danced in because she was a dab hand with a sewing machine.

I miss the mother she was when I broke up with a long-term boyfriend and she helped me to move forwards, and the one she was when I got into sticky situations as a student and she got me out of them. And I miss the mother she was when my kids were little and I got to see the joy she felt in being a grandmother, for those few brief years.

A wise friend whose father passed away from Alzheimer’s said that, once they’re gone, you reclaim them. You remember who they were before dementia had them in its grasp. I imagine, when she dies, I will feel all the emotions.

For now though, I will keep on doing what I can, when I can, as much for myself as for everyone else, because I don’t want the burden of guilt when she’s gone. But the fact is, she’s already gone. I’ve come to terms with that now, and I seek solace in the fact I’ve created my own little family – something I will never take for granted – to celebrate with on Mother’s Day.

For support and advice visit Dementiauk.org.

Read more on Mother's Day:

• The best Mother's Day flower delivery options, from M&S to Prestige (Yahoo Life UK, 5-min read)

• Looking for the perfect Mother's Day gift? I’ve been recommending this M&S beauty box to everyone (Yahoo Life UK, 5-min read)

• Still need a Mother's Day gift idea? This £20 M&S afternoon tea letterbox gift will go down a treat (Yahoo Life UK, 5-min read)