For a number of years we have been trying to comprehend my mothers increasingly baffling behaviour. This has ranged from rudeness to ignoring friends and family, incontinence, loss of interest in her favourite pastimes, loss of inhibitions and most recently a general lack of empathy or emotion and inability to carry out day to day tasks such as cleaning, hygiene and eating properly.
That’s the list that I have repeated over and over again to medical professionals but who lack the insight into my mum and who she was. She was my best friend in the whole world, we would talk and see each other most days and never run out of stuff to talk about. She read voraciously sometimes 4 or 5 books a week. She was extremely stylish and would spend hours shopping and talking about clothes and aesthetics. She was sharp as a knife and witty. She would character assassinate someone within minutes of meeting them. I was always so proud she was my mum because she was so different from the other mothers, she taught me to think differently and to have interests and to contradict and conflict my ideas and aesthetics. She was unpretentious but cultured.
When my daughter was born 6 years ago they formed a strong bond, which despite all this is still apparent when they are together even though my mum is not able to look after as she once did.
The changes have happened slowly over the years, with moments of her seeming okay and this is why it has baffled and frustrated us. It has been difficult to pinpoint when it begun and often the symptoms would fluctuate and with these bazaar changes have come our feelings of sometimes anger, embarrassment and frustration. Muddled with years of no diagnosis or reason we have spent so many days and sleepless nights going over the possibilities of what it could be. It is hard to not feel immense hurt after crying and pleading at her to be better and to try. These were the hardest times as she would show no emotion to our upset.
It is so exhausting to go various medical appointments and be told she has depression or worse old age. One of my lowest points was taking her to see a counsellor- a referral from our GP and the councillor told me she was just getting older. I walked home, shut the front door and actually screamed the house down. This is a memory that still reduces me to tears now. I was so angry that he saw her as the messy, bland woman in front of him and had dismissed my letter beforehand telling him all about my mother.
Two huge results of this illness were firstly my mum lost her job of over 10 years as a bookshop manager, they understood that she was ill and were sympathetic but at her last meeting before she was dismissed I sat with her as they listed all the basic tasks she had been unable to carry out over the last few years. She just talked about our GP being related to a famous puppeteer.
The other big change was after 40 years of marriage to my father they separated. To some this may seem mean but my father had lived for many years with a person who could not give him any love, affection and minimal interaction and there didn’t seem to be concrete reason why. I don’t think it is possible to understand what it is to live like that.
So finally after many, many years and referrals, set backs and lost appointments my mum received a brain scan which showed a large tumour in her frontal lobe- a benign meningioma. This is a slow growing, non-cancerous brain tumour.
She will be undergoing brain surgery tomorrow.
The risks are minimal but the outcome is not clear. It is unlikely to get worse but whether any of her old self comes back is a matter of a very slow recovery and patience. These wart-like growths cause lots of scarring over the years and the damage they do is irreversible.
There is a sense of relief now we know what it is and now we can access services to help assist with her day to day care.
However nothing will ever bring her back completely and I have had to mourn the loss of my favourite woman every day. It has pushed our family to the limits at times when we have taken our frustrations and hurt out on each other.
So I will continue to keep a picture of my beautiful mother by my bed to remind me what she was before and I will continue to fight every day for her to make sure she has a decent life because that was what she did for me and my brother, she fought for us. She was our passionate and feisty Italian mother and nonna.