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Understanding Dementia & Being a Child Carer

On the surface, Landa George is a quiet unassuming lady. But when you dig deeper, and get to know her better, you realise that she is a lady of immense resilience, strength of character, with a heart of gold. This is part of her story (not the whole story), of how she grew up as a child carer, caring for her disabled mother. Landa has also written a book on the topic of dementia, providing advice and coping strategies for carers (link). If you are caring for a relative experiencing dementia, or caring for clients with dementia, I would highly recommend reading this book.

Landa with her mum Essie. Essie is 85 in this photo

Landa was born in Hackney, to her mum Essie. Essie was from the island of Montserrat, and became deaf at age 12. Due to limited support available in Montserrat, Essie was pulled out of school after losing her hearing. Essie is the eldest of six children, and thus became the carer for her younger siblings, helping to cook and clean for the family. So, when Essie came over to the UK, her literacy skills were not great.

As Landa grew up, she became Essie’s ears, and also helped out with reading letters or newspapers. Landa was her advocate, advocating for her when she went to meetings. “That meant that I developed a very close relationship with my mum, because she wanted me with her. “

“My caring is divided into 3 different periods. Firstly, when I was a child carer, which was advocating and communicating for my mum. And then as I got older, my mum suffered from arthritis and her mobility started to deteriorate. So, I was providing physical support, helping her mobilise and get from Point A to Point B. In the third stage, her cognition started to deteriorate, and she developed dementia. She struggled with memory, paranoia, and delusions.”

“Emotionally, I think, the first two periods when I was younger, the physical disabilities were much easier to deal with compared to the cognition problems in later life. I suppose, in Essie’s case, it was also complicated because she had the communication problems from being deaf, the mobility problems, on top of dementia. As a carer, it was very difficult to negotiate all her needs, because it seemed like she had so many needs compared to others, but the support wasn’t available.”

Being a Child Carer

“I remember seeing a photo of myself when I was about eight, and I remember thinking, I looked really miserable. I think it [being a child carer] had a very significant impact on my childhood. For instance, when I was 12, I don’t think about happy stuff or doing things that children do. My mum was always working really, really hard, in a factory. And then when she wasn’t working, she didn’t have time to take me out to play at the park. I didn’t have the freedom, the carefree spirit that children have. Also, because my mum didn’t have hearing, she felt she had to be more cautious with me. For instance, my mum didn’t let me play outside the house, because she was afraid if something happened, she wouldn’t be able to hear me calling. My mum never let me play out, I was always right beside her. So, that meant I had less freedom.”

Advice to other Child Carers

“However, the benefit of caring for my mum was that we had a very close and special relationship with each other. So, even though I missed out on some aspects of childhood, I also gained many positive things. Some of the benefits of being a child carer are that it makes you more responsible, more resourceful, more empathetic and sensitive towards the needs of other people. I became a really good communicator, because if there were complex things that people were telling me, and I had to explain it to my mum so she could understand it. So, because of my caring role, it gave me lots of beneficial skills and personality traits. In hindsight, there are lots of benefits, although it may not have felt like it when I was younger.

“Also, I want other child carers to know it’s okay to acknowledge any emotions that come up. They are valid and okay. When I was in primary school, and had a school trip, it was my first time away from home. I was so worried about my mum. After two days, I started to relax and have fun with my friends, and I felt so guilty because I didn’t want to go home. If you are a child and caring for someone, please know that all of your feelings are valid. If you don’t want to care anymore and feel guilty, that’s completely normal. It doesn’t mean that you’re a bad person. You’re a good person, and you’re doing something that is very valuable.”

“If you’re a child carer, the opportunities to have fun may not come around as often. So, when they do, put yourself first. Have as much fun as you can and find every opportunity to laugh. Don’t feel guilty, and just really enjoy yourself.”

Burnt Out

In 1995, the volcano in Montserrat erupted. Montserrat is a British Overseas Territory, a small island measuring approximately 16km (10mi) in length, and 11km (7mi) in width (link). The ongoing active eruptions have devastated the island, and between 1995 and 2000, two-thirds of the island’s population was forced to flee, leaving fewer than 1200 people on the island in 1997 (link).

Essie who had planned to spend her retirement years in Montserrat, had to cancel her plans, as her retirement home had been destroyed. In addition, Essie’s younger brother (Landa’s uncle) moved to UK as well to flee the volcanic eruption. He is one year younger than Essie, and also has a hearing disability.

Landa says: “At one stage, I was caring for both my mum and her younger brother. Also, I was caring for my children and working on top of that. For a long time, it felt like I was doing it on my own, and juggling family, work and study. It was really stressful. There wasn’t a lot of support available.” At that time, Landa had two small boys, and was working full-time as a social worker.

“My uncle developed cancer, and I had to start taking him for radiotherapy. I was the main carer for both my mum and uncle, and the toll of all the stress started affecting me. When we’re stressed, sometimes we don’t know until something happens. I thought I was managing okay, but then I developed alopecia – all my eyelashes and eyebrows fell out. My body was sending me signals that ‘I’m not doing okay’. Nowadays, I would definitely tell people to pause and listen to their body. If you’re not sleeping, or if you don’t feel well, you need to listen to your body instead of ignoring the warning signs. You need to look after yourself, as much as how you look after your loved ones.”

Age Discrimination & Disability

“I worked in Adult Social Care working with adults who have learning disabilities. What I saw at work was that adults with mild or medium learning disabilities were getting good support, being offered £1,000-£2,000 of care packages every month. In comparison, my mum who had multiple disabilities – sensory disability, physical disability, and dementia, was not able to access the support she needed. At one stage, there was zero support offered to her at all. It didn’t make any sense to me at all, that because she was in her 80s there was no support. So, I saw first hand, how the system discriminates against older people. If you’re younger with a disability, there’s a lot more resources that are available.”

“The one thing I would change would be how people value the elderly or disabled. If they were truly valued and cared for, and society changes the way we see them, more resources would be made available to support them. It seems that in other areas of British society, there is more spending and resources available. But when it comes to caring for people, it seems that this is not as important.”

Supporting Dementia

“One of the main reasons why I wrote a book on dementia, was because it took approximately 10 years from the time my mum started having symptoms till the time she finally received a diagnosis. There are different stages of dementia, and my mum started accusing my sister and the neighbours of theft. Or we’d go to the bank, and she would accuse the bank of stealing her money. Because I was her main advocate, I had to help with filing a police report, or changing her house keys and locks. To my mum, all these things were real and true to her.”

“Before my mum had her diagnosis, I think my family just saw my mum as being a horrible person. If you think that something is not right, or if your relative has changed their behaviour, try to speak to a doctor and get help as soon as possible. Even though, dementia is currently incurable, there is a lot you can do to educate yourself as a carer, and to gain a deeper insight of how to support them better.”

“With a diagnosis, you’re more likely to get support from social services or your local carers centre. Also, ask for support from family and friends. Don’t do what I did, and try to do everything yourself. Try and ask for help. Everyone needs a break and a holiday. If they say no, just keep asking.”

A Story to Share – Landa’s Holiday with Essie

In February 2019, when Essie was 88. Landa took Essie for a winter cruise to Lanzarote and Tenerife. Landa shares: “My mum was a real penny pincher, she never wanted to spend money on anything. So, I encouraged her to go on this cruise, and I was the main carer. I had to use all my skills to mastermind this holiday. We needed to take the train to Southampton. I ordered a wheelchair online and had it delivered to her house. With British Rail, if you’re travelling with someone who has a disability, you can arrange ahead of time to get assistance. When we arrived at the station with the cab, there was someone to meet and help us with the luggage. So, I could help my mum and push her wheelchair.”

“I was so happy with myself, that we managed to get to the cruise ship smoothly. However, when we got on board it was really challenging. During the nights, she would cry because she was in pain and couldn’t sleep. I had to help give her painkillers, try to help her find a comfortable position. In the mornings, she would need help getting up and into the shower. I would help to wash her, dress her, and take her down for breakfast or lunch. I was with her 24 hours a day, and the trip was nearly 2 weeks. It was the most challenging time I’ve spent with my mum, and I was completely exhausted.”

“About five days into the trip, I had a phone call with my husband and daughter. The boat was rocky. I had seasickness and felt so miserable. I remember thinking to myself, ‘why did I put myself through this holiday?’”

“Then, the end of the holiday came. Even though I found the holiday very challenging, my mum had a really good time, and enjoyed herself. At the end of that year, in 2019, my mum passed away. With hindsight, I realised what a gift it was to have that final holiday with my mum. It was such a privilege to be able to care for her, look after all her needs, to spend all that time with her for two whole weeks. It was a gift to be able to spend that quality time alone with my mum, just the two of us. What a privilege it was!”

“It’s only with hindsight, that you’re able to value the experience. During the experience itself, you don’t have the space to do so. You’re just surviving each day, and on autopilot caring for the other person. My mum, Essie, is an amazing person. She wasn’t just a disabled person. She was also a really strong woman, funny, hardworking, resilient, resourceful. She was disabled, but all her children are successful and doing well today, and that’s because of her.”

photo of Essie taken during the cruise

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