Someone recently asked me, "What's the hardest thing about having a mother with young onset dementia?". I didn't know what to say at the time, it's something I try not to think about, desperate as I am to hold onto the positive aspects of my family's struggle. I've mused on it many times since and have come to realise the root of each answer I come to is defined by the nature of my relationship with my mum and the way in which my love for her, and my father and sister, has evolved.
When my mum was in her early fifties she started to struggle finding the right words, began to lose her chain of thought and become muddled. At fifty-five, after investigations from her GP and a neuropsychiatrist, she was diagnosed with frontotemporal dementia (FTD). Unlike more common forms of dementia, such as Alzheimer's Disease, Mum's memory is relatively preserved, however she is now unable to use language meaningfully so conversation is impossible. She often gets stuck and repeats "oh no" indiscriminately for days at a time. She can no longer make sense of her environment so becomes scared easily. Mum needs prompting to eat and drink anything (other than chocolate) as well as help to wash and dress in clean clothes. Needless to say, this is not the mum I used to have.
When Mum was well she was, and I continually remind myself, still is, an impressive parent. A Cambridge graduate who worked full time at a senior level, took care of me and my sister, and completed an MBA in her few spare hours. She is an inspirational woman. Unfortunately, Mum became unwell when I was around 17 and was diagnosed when I was 20 so one of the "hardest parts" of her illness for me has been missing out on the adult to adult relationship we should have shared. When I see a friend with their mum I realise the nature of their love for their parent is so different from mine and I'm jealous and saddened that I've skipped a step that should have lasted most of my young adult life. I've missed my mum's love and support as I make difficult personal and career decisions; the loss of what never was has been difficult to accept.
Another of the "hardest parts" of this experience has been continually relearning how to love my mum. As a child I loved her with affection and dependence, as a teenager with moody reluctance and as an eighteen year old with distant fondness as I moved away to university for my medical degree. As Mum became sick I loved her by visiting more regularly and lying to her when she said the illness hadn't changed her. We continued for a year or so in this mould, acting as normal around each other as we hit a new rockier phase.
For about another year, Mum had enough forthrightness to insist on doing what she would normally do without the insight to know this wasn't safe anymore. This was a very difficult stage for the whole family. For example, it wasn't safe anymore for Mum to go for cycles as she often got lost, always forgot her phone and had very poor road safety awareness. Therefore dad had padlocked the shed containing the bikes to stop Mum going when he was out; Mum didn't believe she had changed at all so thoroughly disagreed with our assessment. On one sunny day, I was reading in the garden when Mum asked about the padlock. Knowing how much Mum had been arguing with dad as he tried to limit her access to now dangerous things, I claimed it was me that put the padlock there to give dad a break. When I refused to remove it she yelled at me that I was a "cruel cruel person", how she "couldn't believe a daughter of [hers] could be so cruel" and how she "couldn't believe [I] could ever be a doctor if I was so horrible to people". Your mum should be the person who knows you inside and out, so when mine directly went after my personality and character like this, it shook me. I knew I was doing the right thing for her and it was the illness talking but in the moment, that just didn't numb the burning feeling inside my chest like it should.
Learning to love my mum as she changed from a soft, very physically affectionate and supportive parent to an argumentative and prickly one was difficult. What made this harder still is once I adjusted to the plateau we were on, the cliff edge crumbled again and I land flat on my face once more. This has happened over and over as Mum has changed over the years and every time I feel a fool for not expecting it.
How Mum is now throws up new challenges that soon become the "hardest thing" to deal with. She knows who I am when I come to visit and is delighted to see me. She literally follows me around the house wherever I go, talking non-stop in incomprehensible, repetitive phrases. I still have that warm feeling when she gives me a cuddle of being loved and cared for, but these are bitter-sweet movements for me now. That brief second of being in her arms seems to trick me into to thinking when I release her she'll be there for me as she was before, but then I let go and the spell is instantly broken. I know the roles in our relationship have almost completely reversed and I'm just happy she is happy.
As Mum's disease has deteriorated she has now become quite childlike, easily scared, difficult to please and absolutely in complete refusal that there is such a thing as bedtime. I feel very protective over her. When I visit her now I love her by cuddling her continuously, convincing her to change her clothes and spending hours trying to coax her into the bath.
The final thing I find "the hardest" is my concerns for my dad and my sister. It is, I think, everyone's nightmare to lose themselves to a degenerative condition like dementia, but close behind is the fear of losing your partner in crime to this thief. At thirty years of marriage my parents were still a force to be reckoned with, at thirty-six my dad is working full time and caring for his wife with every other available hour. It's a huge task for anyone to take on and has been extremely challenging for my dad. My sister and I are endlessly grateful to him for everything he has done for my mum and the way he has learnt to love his wife in all her various forms. I know my sister struggles as I do to come to terms with the slow loss of our mum, but I also know she doesn't always tell me. My dad, sister and I are independent people who love each other deeply. As such we try to protect each other often by not telling the others when we are sad or missing our loved one. We all know this is silly, and encourage each other to be honest and let us help, but still we continue to parent each other as we have increasingly learnt to do.
As Mum becomes more unwell, as a family we have very reluctantly accepted her needs are beyond what we can manage at home now. Mum will soon be moving to a lovely residential home. I do not know what stands ahead for Mum and us as a family, but I do know that whatever happens we will cope with it, with love.
Dr Becci Crook is supporting Alzheimer's Society's United Against Dementia campaign, calling on society to put aside their differences and unite against dementia. To find out how you can get involved, go to www.alzheimers.org.uk
If you have any concerns about dementia or memory problems, call Alzheimer's Society's National Dementia Helpline on 0300 22 11 22