When I arrived home from my year abroad in France I was ecstatic to be leaving behind nine months of bad manners, public urination and pretentious attitudes to drinking. When I arrived back at my family home in Lincolnshire there was one member of the family I was looking forward to being reunited with more than any other. Janet was laid across the sofa snoozing. She had been fed and was tired from her walk. We all knew her best years were behind her, and she was losing her hair at an alarming rate this summer. When I entered the room she didn't pay much notice. When she was younger she would get excited when I came home from school and make a fuss of me. Those days were gone. I reached out a tender hand and stroked her head gently before sombrely muttering "Hello Mum".
Whether they admit it or not, the vast majority of university students relish going home for the holidays. A seemingly unlimited shopping budget, functional plumbing and a euphoric absence of damp make the family home seem more like the Ritz compared to students' term time trauma. Over the holidays my newsfeed on Facebook is flooded with photos of Sunday Roasts, courtesy of "the best Mum in the world!!" and selfies of students reunited with their parents. My reaction is bitter. When I went home for the first time since embarking on my university adventure I was welcomed by my distinctly sick looking Dad who told me that my Mum had been diagnosed with Alzheimer's.
My Mum has been on a downward spiral for the past four years, and it's a lot to handle. Unfortunately she has early onset dementia, a particularly potent form of dementia that seems to poke new holes in the sieve that is her memory on a daily basis. Interestingly, one of the first things she forgot was my sexuality, and in many respects this has been the most frustrating part of my experiences with parental dementia. I did not spend the best part of my teenage years deliberating over how to come out to my parents in order to have to do it again every day of my life in my 20s.
Mum is absolute besotted with the idea of marriage, and this has remained intact even through her dementia. When my brother visits with his girlfriend, Mum's face absolutely lights up as she asks whether they're planning on marrying or having children yet. She turns to me, takes a moment to think, as if I'm some acquaintance that she once knew quite well but has since lost contact with, and asks me whether I'm going to get a girlfriend soon. My heart breaks. Any progress she had made since the moment I came out has been absolutely reversed by this vicious disease. Where do I go from here? I can no longer give her the one thing I know would make her happy: for me to find a wife and have children. Previously, she would have been over the moon to see me settle down with a man and do the same, but these days her world has shrunk to such an extent that there is no room in her mind for such a queer notion.
There are forms of early onset dementia where the genetic characteristics are much stronger than other forms of the condition - and in some cases a child of someone with early onset dementia has a 50% chance of developing it in later life. Finding this out at the tender age of 18 is earth-shattering. My life had just begun and suddenly felt as though it had just ended. Suddenly the idea of embracing my new found right to marry and adopt children didn't seem so appealing. Why would I tie someone down to potentially suffer the kind of life my Dad has now? Who deserves to have to sit by my side as any spark of life in me begins to be supressed? What kind of person would I be if I chose to have children, knowing that they might have to go through the same turmoil as I did? Alas, these remain unanswered questions, but they are questions I cannot indefinitely run away from.
Paradoxically, life with a mother who has dementia is not without its lighter moments. When you're walking through Marks & Spencer and she announces to anyone who will listen that she needs to "go for a poo", it's pointless and exhausting not to see the funny side. The utter confusion stamped across her face when we use a lift, or go to the cinema is a source of great entertainment for me and my family. Some might say this is in bad taste, but I would rather have bad taste than lose my sanity.
I suppose the funniest thing of all is that the day will come when I beg for her death. It's funny that while I sit here complaining about how hard things have been, the reality is that things are quite simply going to get a lot worse. It's funny that what can seem the worst of times; you will look back on with nostalgic longing. The most respectful thing I can do is to resist the pernicious urge to detest my own mother, and I have to confess that I'm not always successful in this endeavour. Nothing can prepare you for the gauntlet that dementia sets. Five years ago I didn't think I would be sat at my computer thinking: "Gosh, I really hope my Mum doesn't live for much longer.", but here I am.
If you, or someone you know, is going through a similar experience and wants support, you can visit www.alzheimers.org.uk or call the National Dementia Helpline on 0300 222 1122.Suggest a correction