“My grandma has been living with dementia for around 5 years. However, she wasn’t officially diagnosed with Alzheimer’s until 2 years ago. We noticed things started to change for her when we were clearing out my grandfather’s old office. He was an amazing man, he was kind, smart, and incredibly devoted to God. His office was filled with all kinds of books, from the encyclopedia of garden plants and flowers to a calendar of saints. We knew it wasn’t going to be easy for any of us to clear away his belongings in the space he loved so much, but he had lost his battle to cancer years ago and we know he would have like us to utilize the space as much as we could. If we had tried to move things a year or so before, my grandma would have been extremely agitated and upset. She hated people moving things around in her house. Yet, she didn’t bat an eye when we filled an entire skip in front of her.
That’s when we knew.
She had been very independent and could happily live at home by herself, as long as we checked on her every day and brought her meals. Unfortunately, in January of this year, she had a fall and broke her hip. Her neighbors found her on the side of the road. She had been walking to church with a jumper to donate, a jumper we had bought her as a gift. She thought it must have been too nice to belong to her and wanted to do something kind. This happened when I was at university in Southampton, hours away from home. I took weekends off when I could, to go and visit her at the hospital. She wasn’t the same. She didn’t laugh as much. She didn’t recognize me, and she wasn’t able to hold a conversation. The doctors told us with her condition, the anesthesia they used to fix her hip may never wear off. We were heartbroken.
After her time in hospital had come to an end, she was placed in a care home for six weeks to recover. She was much the same but enjoyed it when my mother came to play the piano and have a sing-along with her and the other residents. At this time, I was still a full-time film student at university, and it was becoming more difficult to take the time off to visit her. I called her every day, but she didn’t fully understand who I was and why I was calling.
My family and I were struggling to find what to do when her six weeks ran out. We came up with a rotation system that meant she was alone for as little time as possible. My dad works a full-time job and my mum is an extremely hard-working woman who wears many hats. Both of my parents are also foster carers, meaning it’s hard for them to find time for themselves, as well as my grandma. I couldn’t believe the timing. It felt like a sign from my grandfather. Just two days after my grandma returned home, my university closed due to COVID-19.
I knew what I had to do.
I still had lots of university work to finish but that was now my second priority. I had become a full-time carer and my grandmother needed me. Since I had moved in, we noticed a huge difference in my grandma. She could talk about anything. She knew who we were (most of the time) and she could reminisce on stories of her parents we didn’t think we would hear again. She is an absolute joy to live with. We laugh all day every day and she is full of life again. She often plays little jokes on me. If I walk into the room, she will sit up on her chair and say, ‘Boo!’ and then we both laugh about it for ages. She loves to talk to me about her son, Anthony, and when I tell her Anthony is, in fact, my dad, her whole face lights up and she is filled with glee.
I started to make little videos of our interactions to show my family we were still having fun even though we were quarantining. I decided to post one on TikTok and the response was incredible! 50,000 people had seen it in the first week. People loved her! So we made more videos together, one of which has nearly 1.5 million hits. We were coloring in a picture of a lion, and we discovered her hate for the color yellow. She was disgusted when I suggested we use it in the picture.
Our TikTok page has just hit 58,000 followers and 1.6 million likes overall. We even Livestream our art sessions on a website called Twitch, so we can talk to our followers in real-time. We both love it! I have made a couple of daily vlogs on YouTube to raise awareness in longer videos about what it’s like to live as a young carer in lockdown and how we keep our days as interesting as possible. We have been in the local newspaper, and even more recently, BBC news on the television!
All of this has felt so surreal and overwhelming but I am so happy to be able to raise awareness and show others a dementia diagnosis doesn’t have to be terrifying, and life doesn’t have to be doom and gloom. I am so proud to have a community online of people who have had similar experiences, who have found comfort in our videos after losing a loved one to dementia, or who use our videos to find new ways to communicate with their loved ones who suffer from the same illness. The comments and messages we receive mean much more to me than the numbers under our profile.
A girl recently messaged me on Instagram and told me she starts her new job as a carer tomorrow, a job she was inspired to apply for after watching our videos. I am so happy to be able to spend this time with my grandma and share our memories with the world. I wouldn’t have it any other way. I will even be deferring my next year of university to stay with her because I know what I am doing is making a difference, and she deserves the world. My degree, my friends, and my normal life can wait.”
This story was submitted to Love What Matters by Orla Phipps from Eastbourne, East Sussex. You can follow their journey on Instagram, YouTube, and TikTok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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