Today is Mother’s Day and I am grateful I have a mum to visit. I will try not to feel sad when I see her, because I know she will not recognise the significance of the day. She will not know when she last saw me or spoke to me, she can not engage in conversation – but for now she sees me and knows my name. I know that ability, like everything else, will disappear. But I am holding on to this recognition, this small sign. Whenever she says my name, it makes me happy. There must still be something of her in here, behind the tired confused eyes and the mouth that struggles to find words. I’m clinging on, trying to understand, trying to appreciate the small things, savoring them before their eventual disappearance into a mysterious swirling abyss.
My mum, Nancy, has dementia. This cruel disease has slowly eroded her personality and I struggle to recognise the person that sits in the chair. Silly things – she is wearing slippers. This means nothing to most people – but she hated slippers, and despite all my attempts, the various ones I would buy her – would never wear them. Claimed she couldn’t walk in them. She always liked to wear smart shoes with a small heel, even around the house. She has bare legs – she would never go anywhere without her tights on, which often meant me going to the shop for emergency supplies – and as for trousers – don’t go there. But not only her appearance, her personality has changed dramatically.
We always had a strange mother/daughter relationship. Sadly plagued with various mental health problems throughout her life, often giving way to bouts of erratic behaviour, we tried to salvage some kind of relationship in between the chaos. She had a strong, forceful personality, we clashed a lot, I’m not sure I did a good enough job of trying to understand her. And the guilt eats at me.
And I’m angry because I always felt she needed a break. She is an incredible 88 years old and I consider myself lucky to still have her – but life gave her a hard time with mental health issues and now she has been dealt the dementia card. I always wished she could find some some happiness in life. But if there is such a thing as a silver lining when it comes to dementia – she seems to have reached a peace of mind. I have been told this can happen to people with strong personalities and with mental health issues. I am trying to be grateful for this “side effect”. But I am grateful because I am often reminded that when other people experience dementia it brings anxiety, frustration and out of character aggression. I am so grateful my mum seems to have dodged this bullet. But it does make me smile when people in the care home say “your mum is lovely and so gentle, is she always like this?” I just smile in acknowledgement but the truthful answer is no – she had a feisty, often argumentative and opinionated nature.
And I am guilty because while my mum seems to be dealing quite well with her dementia, I am not. I am ashamed to admit I’m struggling to cope with all these changes. I am floundering in the dark, eternally confused, trying in vain and failing miserably to understand what is going on in her head. I am trying to make sense of something which is nonsensical. I try to make conversation and fail. I don’t know how to engage with her. I don’t know what to do. I feel a failure. I don’t want the dementia to become all about me and my feelings, it’s not about me, but I have absolutely no idea how my mum feels, and she can’t tell me. It’s all guesswork and I try to understand and make sense of all of this in any way I can.
And I am grieving and missing the person I knew. Yes, even that argumentative person I often clashed with. We drove each other crazy. She was opinionated and stubborn but she could also be kind and display acts of kindness to those she liked – and you always knew if she liked you or not. Often unpredictable, with a quick and fiery temper to match her red hair, she was never shy of giving someone a short shift, often much to my huge embarrassment. I am grateful for the things she taught me – good manners, good grammar, a love for books, newspapers, reading, animals and birds. She had beautiful handwriting and loved to write letters. One of the saddest moments I can recall is when she was trying to write me a Christmas card (this was in March – you just have to go with this) and she couldn’t remember her alphabet or the letters to write. I just glossed over the incident but when I left her, I cried all the way home. She also had a sharp brain when it came to numbers and would mentally add up all the items in her shopping basket, so that when she got to the checkout she knew exactly what the bill would be. Sadly she didn’t pass this mental mathematical agility to me.
After a slow start, her dementia has advanced dramatically over the past year. She was admitted under emergency respite care to a nursing home in August 2015, where she will remain. I desperately wanted her to return home to her sheltered housing complex, but her needs were too great. It’s one of the hardest decisions I’ve ever made. Is this what she would want? I do not know, and she can not tell me. She seems to have no memory of where she lived before and doesn’t seem to miss it. It is a confusing world and I am confused also.
I have Power of Attorney, which I am grateful for, and I am responsible for making all decisions on her behalf, but the enormity of this decision weighs heavily on me. You want to do what’s best, I worry, and I still don’t know if I am making the right choices for her.
But she is looked after, she is close to me and I can visit her. I am grateful for this.
Packing up her home was a heart-wrenching, weird experience, because it’s what you do when someone dies. I did this for my dad – who died in October 2014. It felt the same – but my mum hasn’t died, she is still here, albeit a slightly different version of herself. She was always fiercely private. It felt wrong to be going through her things, like a burglar with no right, and then deciding what to throw out or keep. I remembered the day we bought that stained glass owl picture in a charity shop on a rare weekend visit to Aviemore. Memories which now seem all the more precious, memories which are now lost to her. And although she is still here, she had no say in what stays or goes, or knowledge of what was going on. Needless to say I now have boxes of her things in my house. Random ornaments, terrible plastic flowers and horrendous trinkets I’ll never display, but can’t bring myself to throw out.
So where does all this leave us? I like to think of myself as a positive person, but yet I can’t escape the fact that dementia brings no hope. It’s only release is death. And I already have regrets. There is so much I don’t know about her life and there’s so many unanswered questions that will remain a mystery. But if dementia teaches you anything, it’s to live in the moment and to be grateful for any small things. Which is actually a good philosophy to have in life. My mum and I have a different relationship now, we can’t go back, we can only go forward. And while I’m missing and grieving the old her, I’m grateful she’s still here – and there are parts of this relationship I’m learning to appreciate and love. We are more tactile, she likes me painting her nails, she can sometimes look happy to see me, and she’ll tell me. And she laughs. I love when she laughs, often randomly and at things I can’t comprehend – but I don’t care. I cling to all those moments and take them when I can, and I know this is likely to be short lived. I’ll be grateful and enjoy the all times I have with my own children, my 19-year-old twin boys. And although it’s difficult, I try not to worry too much about the future, and pray we find a cure.
Notes on dementia: The Scottish journalist and broadcaster, Sally Magnusson’s mum had Alzheimer’s disease and she wrote a book about her experiences called Where Memories Go: Why Dementia Changes Everything. In her book she stated that “If dementia care were a country, it would be the world’s 18th largest economy”.
There are around 36.5m people in the world suffering from dementia, 800,000 in the UK. The annual cost of care stands at around £400 billion a year – 1% of global GDP. In the UK that figure is more than £23bn, twice as much as cancer.