Marie Lucas, Coordinator of Norwich City Dementia Action Alliance, shares her personal account of life as a carer in a family affected by dementia.
In nearly 30 years of working within the health sector, I was never so emotionally touched by dementia until it personally affected my own family.
I have been a carer for both of my parents-in-law, who have had Alzheimer’s disease, the most common form of dementia. My mother-in-law had lived well with dementia for over 8 years. Unfortunately a few weeks after her funeral my father-in-law was also diagnosed with Alzheimer’s disease. We looked after him at home for over four years following his diagnosis until a year ago, when we decided to place him in a care home as we were finding it increasingly difficult to manage caring for him at home.
Through my work, I have known people who are living with dementia, their families and carers whose journey lay relatively parallel to my own, which is full of uncertain crossroads. Sometimes it can be bumpy, somewhat wearisome, at times frustrating, but somehow there were also times when we went through smooth patches and had a somewhat happy ride.
It has never been easy dealing with the day to day challenges of seeing a loved one drifting away and slowly losing a big part of themselves. As I recall, I used to exchange text messages very often with my mother-in-law, in fact more often than my husband. We used to enjoy regular phone calls on top of regular emails, but as her dementia worsened our connection became fragmented. She was also a very good cook and used to make the best Christmas pudding. She knew how much I loved her Christmas pudding, hence she made extras for me to keep for my birthday. However, it didn’t last until February as I used to eat it for my breakfast nearly every day (that’s how good mum’s Christmas pudding was!) It’s sad that dementia turned a very good cook into someone who could only prepare a raw bacon sandwich.
My father-in-law, on the other hand, was once a scientist and he can repeatedly talk about his work for hours, as this is the only memory which is intact. It’s sad that just a few weeks following mum’s funeral he could not remember that he recently lost his wife. At times, we engaged Dad at home in doing simple tasks such as setting the dinner table, but unfortunately he often left me out as he also thought I no longer lived at home, even as I was spending the day looking after him.
Dementia itself has an immense impact in our family. My son, who is now eight years old, grew up with grandparents living with dementia. Even as a baby he learned to be patient, whilst every long weekend was spent travelling to London to provide respite care to Grandma. Instead of enjoying playtime with Grandma, he learned to help us take care of her. We taught him to operate the hoist or to push Grandma in the wheelchair, so he wouldn’t be left out while we were caring for her. My son learned to be understanding towards Grandpa during the few occasions when Grandpa’s behaviour could be challenging. There were bedtimes when my son was tearful, telling us that he didn’t want my husband or I to have dementia as he didn’t want us to die. My relationship with my husband has been tested on numerous occasions over this period of time due to the sometimes overwhelming demands of family life and looking after my parents-in-law.
Making my own young son understand what dementia is and how we can help someone living with dementia like Grandma and Grandpa was one of the hardest things I have dealt with. I am lucky enough that with my professional background I was able to educate my family about dementia.
Being a Dementia Champion myself, I have provided my own family with a Dementia Friends Information Session, which offers a basic understanding of dementia and helps explain how it can affect people in different ways. It is invaluable for anyone affected by dementia to attend, and you can find a local session by registering with dementiafriends.org.uk. Whether you attend a face-to-face session or watch the Alzheimer’s Society online video, it’s very useful.
We’ve been able to prepare for the care needs of both my parents-in-law, and we’re fortunate to have had the resources to provide for their needs without being reliant on the state and social services.
Throughout this journey, I learned that it’s okay to cry, to be angry, to be frustrated, to feel like giving up, to feel tired, to fear for the future, to worry about losing the person you love, to question ourselves whether we have done enough for our loved ones, and sometimes feel guilty, but most importantly, I have learned as a carer that it is okay to seek and accept help.
Our family has managed to live well whilst caring for our loved ones with dementia. We’ve managed to keep doing the things that we enjoy together. We’ve involved ourselves in various activities in the community. We’re actively involved in dementia support groups, which is the best thing we have done, not just for our parents but also for ourselves. For most of the people I have known affected by dementia, the support group is a lifeline for them; even for ex-carers – they have found friendship and even love for each other. We’re lucky to have an extended family in the Wymondham Dementia Support Group, which offers my family an opportunity to share our experiences with like-minded people who are also going through a similar journey.
Everyone affected by dementia has their own story. Through my work, I have seen people laugh, cry and be hopeful. I take a lot of inspiration from everyone I have met, especially those who are carers themselves.
Amidst the difficult times, caring for both my parents-in-law and being able to reach out to people living with dementia over the years has been a rewarding experience. A beautiful smile from mum’s face each time we wheeled her to the village to buy her favourite chocolate gelato was simply a joy to watch. The memories I have of friends who have already left us behind remind me of their great affection and emotions – there’s a person behind the dementia. Someone living with dementia shouldn’t be defined by it as each person has their unique journey.