When I think of the term losing my marbles I think of a temporary condition where I have to dance around the house madly and sing at the top of my lungs to let out the frustrations of life. After this I’m back to reality and no longer look like I belong in a mental asylum.
My grandma, however, is a different story. I don’t know when she was diagnosed with Dementia because all I remember was that she had to stop driving and couldn’t play golf because people thought she was cheating when she couldn’t remember the scores. I remember her changing slightly in the early days and perhaps only repeating herself a handful of times a day. She was still my grandma, could still hold down a conversation and could still bake shortbread whenever I came to visit with my parents. The problem was that my parents and I live on the south coast while the rest of my family resides in Yorkshire. This meant that every time we visited we could all see a marked difference in her condition.
All of a sudden she stopped talking about going for a walk down Choo Lane and started becoming anxious and afraid to leave the house. She even struggled to go out into her garden some days. She developed a pathological hate for ‘school teachers’ based on a distorted childhood memory and used to make me swear that I would never become one. I distinctly remember that she would throw some small bits of garden waste over the fence and onto their lawn because she so despised them. The poor neighbours were, in fact, lovely people and offered help to my grandparents whenever they needed it.
Despite my mum and aunt’s best efforts, the once beautiful garden became bare, with only a sweeping lawn leading down to the river and no flowers. In her head, my grandma assumed that she must have tended to her garden because that’s what she always did. She always told me what she’d been doing in the garden and one day my dad took me to the side and confessed that she probably hadn’t been out for weeks. As time went on she became more and more child- like, her memories more muddled and she would tell us stories of her past that had never happened. She was beginning to lose her long term memory as well as her short term which in itself was getting worse by the week. She would repeat herself almost every five minutes and I used to mark the points when her brain had turned over and forgot what had happened.
She was still my grandma and she was still kind and caring like she always had been. My granddad, an amazing man who had ten times more marbles than anyone I know, devoted the last years of his life to care for my grandma. Even when he was at his least mobile and in the most pain, his mind was still as sharp as it had ever been, enhanced by a wisdom that I can only dream of acquiring. His health seemed to deteriorate as quickly as my grandma’s state of mind and I feel like what killed him wasn’t old age but the exhaustion of caring for someone who was only a shadow of the person he had married.
It sounds like we never offered help when in fact we tried to do everything we could. Living so far away meant that my parents and I couldn’t help as much as we’d like; six to seven hours drive was what stood in our way. My granddad was one of those proud men who never let on how much pain he was experiencing or how hard it was to care for my grandma. He was from the generation of make do and mend and he was adamant that none of us should give up any part of our lives to help him. We did all that we could, like taking grandma out so he could sleep and cooking meals every so often but there is only so much you can do when you don’t know what the problem is. They did have a nurse come in once a day to get them up and get them started off on their day but then they wouldn’t leave the house for the rest of the day. I can’t imagine how trapped he must have felt and my grandma became increasingly anxious and hostile. She was never violent but she had a certain amount of sass that let on just how much the disease had progressed.
I was thankful that at the time my granddad died she had enough of a memory to remember that he wasn’t there anymore and that the grief was enough that she wouldn’t forget. Sometimes she did forget and we had to lie, saying that he was out somewhere and would come back soon, then her brain would turn over and she’d be on a different track. My aunt and uncle decided that they would look after her; my uncle was semi- retired at the time and was free to keep an eye on her.
It turned out that they needed more than their four eyes to keep track of her though. Even before my granddad died she would fall into acting like a stroppy child, spitting out her food and refusing to get dressed, but we found it funny because we didn’t have to deal with it 24/ 7. I admire my aunt and uncle so much for looking after my grandma on their own for so long but even someone as stubborn as my uncle had to admit that soon she would have to go into a home where she could be looked after properly and by people who knew more about the disease than we did.
One of the defining moments in this deciding process was when my grandma forgot who my aunt and uncle were while they were standing right in front of her.
‘Do you know when they’ll be back?’ my aunt recalled her saying. It must have been the hardest thing to have your own mother not recognise you.
She was soon in a home where they cared for her incredibly well. We went to visit her there every time we travelled to Yorkshire but never stayed longer than thirty minutes. It sounds cruel but it’s hard to talk to someone who doesn’t remember what happened as little as 5 minutes ago and whose memories are so faded and mixed up that they make up horrendous things about the people you love. She once told us that granddad had been a horrible husband and would hit her nearly every day. This couldn’t have been further from the truth and we knew she was linking something that happened to one of her sisters with her own life. We hated that she was remembering granddad like this but the memory only lasted for a second.
I’m going to fast forward a year or so to almost the present day. My grandma had to be moved to a nursing home where the people who work there are nurses and trained to give more care than in the residential home. I wasn’t able to see her for so long and when I eventually did it was like looking at a ghost. She looked and sounded nothing like the lady I had known all my life, she was incoherent and frail and I spent the whole visit with tears streaming down my face.
I knew then that this lady was no longer my grandma. You’re probably recoiling in shock at this statement but it’s true. Yes, her delicate body was an outline of my grandma but she was no longer in there. What’s more, my greatest fear had been realised; she no longer recognised me. I knew that up until now she had gone through waves of recognising me; when I walked into the room she would always know who I was even if she forgot later. This time was different, there was no recognition and no wave. It broke my heart. This feeling must have been amplified a hundred- fold for my dad who, although strong, started to let the cracks show when she became this ill. It would break me completely if I had to see either of my parents in such a state.
The pictures of her that were around the room showed a lady who lived her life, loved her family and always had a good time. The cries of pain that we heard when we arrived and the blank eyes that met mine confirmed to me that this lady was barely a whisper of her former self; a shadow that had no connection to the body it came from. This doesn’t mean that I don’t care about her, I send her a Christmas card every year and I still think of her every day but I don’t know if I will be able to visit her again. My morals are saying to grow a pair but I’m so scared. Actually scared is an understatement. I’m terrified. I’ve gotten over the initial shock of seeing her so helpless and frail but I don’t know if I will be able cope with that feeling of devastation that ripped through me last time. Selfish, I know.
Alzheimer’s and Dementia are such horrendous things and like cancer, it’s something that I never want to get (stating the obvious but hey). So, I’ll eat my purple fruit and keep putting cinnamon on my porridge, anything to help me keep a hold of my marbles for as long as I’m alive.
Some quick facts about Alzheimer’s and Dementia:
- Alzheimer’s is a cause of Dementia. It is the eventual death of nerve cells in the brain caused up by a build up a protein and loss of connections between the nerve cells.
- Nerve cells transmit chemical signals all around our body and cause things like our muscles to contract. They are the way that parts of the brain talk to each other and the rest of the body.
- Dementia is a description of the symptoms that a patient suffers such as the classic memory loss and confusion.
- The symptoms get progressively worse over time.
More facts, figures and information about all this can be found via Alzheimer’s Society and Dementia UK. These charities also offer help and support to people suffering from the disease and their carers so check them out. Why not donate to them if it’s something you’re passionate about!