I’m running the 2017 London Marathon in the hope of raising enough money to help fund the South Leicester Memory Cafes.
This is why…
Forgetting your keys is a regular occurrence for most people, putting something down and then not being able to remember where you left it is something that happens to the best of us, but what if it is something that is starting to happen on a much more regular basis?
Dementia is not a word that anyone wants to hear, whether it’s about themselves or about someone that they care about. As scientists and researchers discover cures and treatments for illnesses and diseases, the average lifespan is increasing, and so is the number of people suffering from dementia, and it is predicted that the number of people in the UK with dementia will double over the next 40 years.
Memory trouble is often associated with old age, and so when my Grandma called me by my sister’s name, or wandered through to the kitchen enquiring about lunch straight after finishing her meal, we just humoured her and chalked it up to her age.
We would often go and visit her in Skipton, where she lived by herself and we would arrive to find her sat with a suitcase, convinced she was coming to visit us. The more time you spent with her, the more you noticed that she would repeat questions and was becoming more withdrawn. My parents helped her sell her house and she moved to live with my auntie in Scotland, and would spend several months at my parent’s house in Leicester. It was shortly after this that Grandma was diagnosed with Alzheimer’s.
Every case of Alzheimer’s is different, and symptoms don’t always follow the same pattern, which is why it often goes undiagnosed.
Once we were given my Grandma’s diagnosis, although it didn’t make things easier, it did mean that we could start to try and understand more about it. When caring for someone living with Alzheimer’s, the more you know about the disease, the better.
As devastating as it was to watch my Grandma deteriorate, and know there was nothing I could do about it, I could see the disease taking its toll on my parents as well. No two days were the same, and all we could do, all anyone can ever do, is to take it a day at a time. Things that once seemed straightforward started to become a challenge, both for Grandma and for the family looking after her.
Round-the-clock care was needed, someone had to be there to get Grandma up in the mornings and to make sure she came down for breakfast. As the illness progressed, so did the time it took her to get up in the mornings, some mornings it would take up to two hours as she would tell us that she was getting up, and then simply roll over and go back to sleep. The concept of time was lost on her, and there were several 3am wake-ups where we would hear a noise and discover Grandma getting herself up and dressed. Some afternoons would see us cooking dinner and suddenly realising how quiet the house was, and we would go to find Grandma, only to find that she was getting herself into her nightwear, convinced it was time for bed.
As with all illnesses, there were good days and bad days. Grandma had always enjoyed getting her hair and nails done, and she would always insist on dressing smartly. This became harder after a while as she began to find it difficult to even know what clothes were what. Choices became very difficult, and so we quickly learnt that offering her a choice that required only a ‘yes’ or ‘no’ answer was the best way to find out what she wanted.
She was one of the founders of St. Leonard’s Hospice in York, and had worked her whole life as a nurse, and so was used to caring for others, rather than being cared for herself. Frustration and depression are almost inevitable effects of Alzheimer’s, and Grandma was aware that she was no longer in control, which was clearly very difficult for her. This sometimes changed her personality at times, which made it hard for all the family as we knew the person she had been, and all we wanted to do was protect her.
Good days were precious to all of us. She had always had a great sense of fun, and this would show through on better days. Little things like doing jigsaws with my sister and I, tucking into her favourite Marks & Spencer’s strawberry trifle and getting her nails done always cheered her up.
There were some moments however, where I would feel her watching me, trying to place my face, and work out who I was. Her reality was no longer our reality. She would retain certain facts, and was always very good at covering up when she was unsure of something, and would answer with a vague “Ah yes, if you say so.”
Her handbag was constantly by her side, with her lipstick in. This was like her comfort blanket and it went with her everywhere, to the dinner table, to the bathroom, and to bed. We learnt quickly that we had to learn to adapt to Grandma’s routine, and one of the hardest things was the need to remember that she wasn’t trying to be difficult, and that we just had to accept that the Grandma we knew and loved wasn’t always there anymore.
It was easy to snap, easy to get upset and frustrated with Grandma, even easy to simply just act as though she wasn’t there, but that was not the way to deal with things. While helping to look after Grandma, there was plenty I could do around the house that, in turn, would help my parents whilst my Grandma was staying with us.
There was very little time to ourselves, and as the disease progressed and Grandma deteriorated it only became harder, but we took the bad with the good, making sure we focussed on the lucid moments. Throughout it all, my Grandma knew who my mum and my auntie were, which is a true testament to the care and the support they gave her. Although Alzheimer’s disease is the most common form of dementia, there is still a lot unknown about it, and no two people will experience the disease in the same way. Caring for someone living with Alzheimer’s is one of the hardest jobs, but it is important to make time for yourself because Alzheimer’s is incredibly hard on the people around, as well as the person who has the disease. Acceptance is one of the most difficult parts of the disease, but I am just grateful for the years I did get to spend with my Grandma, and the disease was the lesson that reminded me to never take anything or anyone for granted.
Twice a month, South Leicester Memory Cafes provide a place for anyone in the local community with dementia, and their carers, to meet and share experiences and provide help and support. Caring for someone with dementia can feel very isolating and coming to the cafes means there is somewhere you can go without worrying.
Each session is different. They usually include some singing, some seated exercises and sometimes craft-based activities – and plenty of cake. There is also information available from Red Cross and Age UK, and of course from the Alzheimer’s Society, who provide the professional support. While St Guthlac’s Church and St. Thomas More allow volunteers for the Memory Cafes to use their parish rooms at no charge, the professional support and specialist help that is needed to run these sessions does come at a cost. There are two Memory Cafes a month, each lasting two hours. It costs £125 to run each session, and so I am running the London Marathon in the hope of funding South Leicester Memory Cafes for a month. It would be incredible to raise enough to be able to do so, and even better if I can raise more to help fund further cafes.