Sometimes we have to step up to be there for the ones we love when they can no longer take care of themselves. When dementia affects our friends and family, it doesn’t wait for us to be ready, emotionally or physically. The journey of an unpaid carer is one defined by compassion and selflessness – sometimes it might feel like too much. How can we make it not only pleasant for those we’re caring for but pleasant for ourselves?
Jason and Isaac
Jason Smith cares for his father in-law, Isaac, who lives with dementia. A relationship that began as a weekly family visit to check in on his wellbeing eventually became weekly care back in May 2021. “After his grandson moved out of the house with his wife and daughter, we needed to move in straight away to attend to his needs.” Jason told us.
Jason highlighted that, emotional proximity to the person and compassion plays a big role in the ability to show up repeatedly for somebody without tangible incentive or reward. “A lot of it is down to patience and showing unconditional love and having that spirit of doing the right thing for somebody who has genuine needs and meeting those needs on a daily basis.” However, the need for time for oneself became apparent in our conversation.
“It’s very demanding in that kind of way and it does have an impact on your health, so I have to be aware of that as well.” Jason added.
As difficult as it may be, it is important that whilst they look after others, caregivers consistently look after themselves – you cannot pour into others from an empty cup. “There’s no designated ‘my time’. Rather like with children, you must manage your time around their time… as everyone does, I have a lot of needs that need to be met but we just get by as best we can.” Jason explained.
Despite this, Jason told us how, when he can, he manages the demands of caring for Isaac with his hobbies. “I’m currently writing a film script, which is my first one.” Jason had discovered an outlet that allows him to separate his life from caregiving, maintain in touch with and reflect upon his emotions.
“It’s based on a lot of life experiences, not as a carer but there’s a lot of things you just feel are important about life and everything that matters in life is in this script – It’s about relationships. It enables you to have that more compassionate outlook in terms of how you draw these things together.”
Katie and Dad
In the event that time for oneself is slim, there are also ways that carers can integrate their hobbies with those they care for. This could look like enrichment activities or valuable down time. Many use media to capture special memories and small moments during this period of life, such as Katie, who runs the Instagram page @dadanddolly: a visual archive of her father, who suffers from Alzheimer’s disease. Katie documents her father’s daily life with his dog, Dolly, creating community along the way. The platform not only serves as an opportunity for people to learn about dementia but learn about or potentially relate to the experience of caring for a family member.
“It’s been a nice creative outlet for me, and it’s a way for me to have community because people are nice and kind and write lovely messages. It’s nice to be able to share this time with other people, because it is such a lonely experience for both people with dementia and their carers.” Katie shared.
The support and following garnered from Katie’s platform encourage them both to be more outgoing and try new things together, whilst bringing them closer together. As a result, Katie’s father’s quality of life has seen an improvement. Kate explained that “I think by being a carer for my dad, I’ve enabled him to continue living as well as he possibly can with a difficult disease. I’ve helped him stay connected to the community, which is incredibly important for anyone with dementia.”
“You need to facilitate connection, social interaction, and joy, and be able to live life as well as you can for as long as you can and feel valued. I don’t take over, I only support him to do the things he can still do, and I allow him to take care of me in the way he can, even if it’s just making a cup of tea.” She added.
Sharing our experiences as carers is important. There’s not only so much we can learn from one another, but there is power in community. Feeling less alone can go a long way for you and as a result, the people you care for. Positive outlets, such as Jason’s and Katie’s, can recharge us and ease the load of caring for someone else. For more carers content, this Carer’s Week, you can watch Jason’s full interview here, visit Katie and her father’s page or check out the National Dementia Carers Day website. You can also visit our blog page for more carers focused content like this.