Dementia: Knowing You’re Going to Lose Them Twice

This is my mum, aka the “Queen” to many whilst I was growing up. Never a hair out of place, make up pristine and incredibly soft mannered and sweet although she had a stubborn streak.

I remember, whilst helping my parents to decorate my childhood home, painting a huge ‘My mum is obstinate!’ above the dining room window. My dad dropped the idea of doing this into my head and then giggled whilst I took the blame!

Mum was infatuated with her beautiful garden and had the greenest fingers ever. She bought nothing processed or pre-made and baked all her own bread, made every bowl of soup we ate from scratch and was economical with any leftovers. Nothing went in the bin; at worst it went in the compost!

She adored spending time with her grandchildren and teaching them how to bake and make things.

Had, was, ate, did, was, was, was…   all past tense.

My mum was diagnosed with Alzheimer’s disease in 2016 and first presented signs in 2014. My dad and I started noticing things were not “right” with her – forgetting recent conversations or events, struggling to find the right word in a conversation, forgetting names of people and objects and losing or misplacing items.

The stubbornness reared its head and she refused to go to the GP. It took over a year and a little bit of craftiness to have her assessed. The GP agreed and recommended medication, which mum initially refused. My dad’s own illness meant he never lived to see the diagnosis in 2016. He would not have said ‘I told you so’ though! He read a poem when my husband and I renewed our wedding vows which ended in the words: – “When you are wrong admit it, and when you are right, shut up!”  

After losing dad it became clear that he, without realising, had masked a lot of mum’s symptoms. Mum would need help during my working hours, in the middle of the night and increasingly more frequently.

Mum went missing because she had forgotten where she was and wandered, finding herself in unrecognisable surroundings. Mum also had a couple of falls, the last one breaking her hip.

Caring for her was beyond my capabilities and despite the guilt I am sure anyone who has cared for their parents has experienced, a care home was the right thing to consider.

At this point all the characteristics of my mum were pretty much gone. She was a new person. Still very much loved, but different. I miss my ‘first’ mum.

Mum went into care at the end of 2019, 4 months before the COVID-19 outbreak. We went 367 days without hugging each other. Only seeing one another on Facetime or through the care home window. It was heartbreaking. When we could see one another again the PPE hid my face from her.

Mum talks regularly about her ‘daughter Michelle,’ yet sometimes does not realise it’s me sitting next to her. I make sure to use my name and my children’s names when we visit to help her.

Mum says the same few words repeatedly. She tells me she is wearing a skirt and that her prawns (which she insists I take every time I see her) are ‘lovely.’ Or ‘Where’s my prawns’ when I am slow to deliver the goods! When I ask her for a hug she says, ‘course you can love’! Although it is limited, it is nice to communicate. She also loves her fingernails being painted.

That soft mannered and sweet woman is still there; however, she is much less inhibited. Saying things quite loudly like “I hate him” and “he’s horrible.” It could be worse!

Music has always been a huge factor in my life, through childhood and throughout my adult life. Although mums’ ‘taste’ in music is vastly different to mine, we still sing along to songs I know she enjoys, which leads her to say/sing the highest number of words at once, doing something to a deteriorating brain that only music can. It is an incredible tool.

This mum is different, but still incredible and I will miss her immensely when I lose her for the second time.

Now, yes, the hair is out of place and there is no make-up to be seen.

However, she is and always will be, my mum, my Queen.

Learn more about this life-changing illness by heading to https://www.alzheimers.org.uk/