It’s Boxing Day 2014. My parents have come over for lunch and now we are all sitting down with the a cup of tea, chatting. My mum asks me which sixth form my oldest son is going to. I tell her. Then she asks again. I tell her. Then, within two minutes, she asks again and a sick feeling starts in the pit of my stomach I know immediately what this is. My Godmother often visited with her sister, Baba and lovely Baba had dementia, she would ask the same question over and over again and here was my own intelligent, capable mother doing exactly the same thing.

Looking back, I can see that there were signs of Mum’s cognitive decline going back two or three years before this. One consistent characteristic of Mum’s dementia has been what I call her “catchphrases” and these started years earlier. The first such catch phrase was “is it new?” Anything I wear has to be commented on and I have to explain whether or not it is new. For a couple of years prior to me realising about Mum’s cognitive decline, I began to get very irritated by this. I remember my parents coming to babysit one evening when my husband and I were going to a black-tie event and I kept my coat on over my dress before leaving the house because I couldn’t face what I then thought was guilt tripping about my having a new item of clothing. I now realise it was simply an early manifestation of her condition. Twelve years on, even a pair of socks, will receive the same comment. Another catchphrase is “just put it on the table”. I visit my parents at least couple of times each week, usually doing a little bit of cleaning, hanging the washing out etc. but I am not permitted to do the washing up. My dad makes us all coffee or tea and, when we have finished, I gather up the cup and saucers (no mugs allowed) and attempt to get past the sentry-post that is Mum’s armchair into the kitchen to wash up. My parents don’t have a dishwasher and Dad does everything around the house now so I like to feel that I am leaving him with all the chores done. Mum won’t hear of me washing up, “just put it on the table” she will say, craning her neck to make sure I am not breaching the barrier that is the connecting door with the kitchen. So, I leave three cups and saucers on the table for my Dad to wash up after I leave.

Mum was seventy nine when her cognitive issues became undeniable. Nine years earlier, we had all began to notice that her hearing was deteriorating but she refused to go for a hearing test or even to admit that she was struggling to hear. Dad must have persuaded her to go for the test at some point but then Mum would not accept the findings. Like all of us, she can be a stubborn person and no amount of reasoning would change her mind. I tried comparing wearing hearing aids to wearing spectacles but she would just snap that her hearing was perfectly fine. Unfortunately, the slightly domineering side of Mum’s personality seems to have become more pronounced as her cognitive decline has progressed and nobody wants to argue with her because she becomes upset over the smallest thing. I had read reports of untreated hearing-loss in older people being associated with an increased risk of dementia and even printed these off for my parents to read. Still no hearing aid was worn. I began to feel resentful that Dad and my brother wouldn’t back me up. My Dad told me in confidence that Mum had been issued with the much-needed hearing aids but that they were sitting, unworn, in her bedside drawer. He said that she became extremely distressed when he tried to tactfully broach the subject of her actually making use of them. I began to understand why Dad thought it best just to leave the topic well alone.

The last Christmas day that we spent at my parent’s house was the opposite of jolly. Mum could not hear a thing anybody was saying and just sat looking miserable. I asked (shouting) if she’d consider trying out her hearing aids because surely she would like to join in with the conversations and enjoy the day with her grandchildren. Mum was not receptive to the idea at all and told me that she had been assured that her hearing was fine and that she didn’t need hearing aids and what did I know about it? Dad, and I don’t blame him for this at all, said not one word to contradict her, and we soon left. However, shortly after this, some eight or nine years after her hearing loss first became apparent, Mum finally relented and began wearing her hearing aids. I believe this is because my aunt, a year older and still glamorous, began to wear hearing aids herself and commented on what a positive difference they have made. The aids have no doubt enabled Mum to participate in conversation again but I do wonder if her cognitive decline could have been slowed, or even prevented altogether, had she used the devices when she really began to need them. We will never know.

Of course, this is really my Mum’s story, well my Mum & Dad’s, and I have had reservations about writing about this topic as my parents are very quiet, private people. I don’t think I will be sharing their names or any photos on this blog even though I have some lovely pictures of them sitting in the garden Mum “helping” Dad do his daily Cryptic Crossword in The Guardian ( he always completes it) . People’s health issues are very personal and dementia is such a devastatingly undignified condition. However, Mum’s dementia has been a huge part of my life for almost a decade now and, if nobody speaks or writes about their personal experiences with it, the stigma will always be there. As more of my friends find themselves dealing with their own elderly parents’ mental decline I find that comparing stories, and sometimes advice is reassuring and helpful.

Thank you for reading,

Samantha

Cover Photo by Pawel Czerwinski on Unsplash