Jamie's Story
Living Together with Low Vision

Photo of Jamie and her mom Evella smiling taking a selfie

Meet Jamie

Hi, I’m Jamie, and this is my Mom Evella. My Mom lives with Diabetes-related Macular Edema (DME) and started receiving treatment for her condition when I was in my early twenties.

Becoming a supporter

For me, becoming a supporter of a loved one with low vision happened pretty suddenly. To say that having the sudden responsibility of being someone’s support was daunting would have been an understatement. At first, I struggled to be patient and understanding of what she [Evella] was going through.

Becoming a supporter changes your life, particularly as a young person. I was used to living on my own. Even as an adult, I was enjoying the immaturity of youth. The idea of having a roommate was not something I loved the idea of, let alone that roommate being my Mom. Not to mention the fear of what it was going to do to my dating life. It required me to mature in ways I thought I had decades to learn. Above all, it made me realise how important my Mom is to me, and how mortal we all are.

A picture of Jamie smiling holding a dog

Maintaining independence

A picture of Evella smiling sat on a sofa with a dog

Maintaining independence

Maintaining independence is such an important thing for us all. Yet it’s not until it’s threatened that we realise just how fleeting it can be. I’m a fiercely independent person, a trait I inherited from my Mom. I try and maintain clear boundaries. I try and remember to do the fun stuff with each other, too. Often, when responsibility takes priority, friendship can suffer.

My Mom’s quality of life is a large concern for me. I know how much her independence means to her. There are times when I feel frustrated about how much help she can need — I try and remind myself that if it’s frustrating for me, then how much more frustrated is she?! After all, asking for help is hard, it can feel intrusive, degrading, alienating and enraging. If she seems angry, I try to remember that she is struggling with all of those emotions simultaneously.

Practicing patience

Practicing patience is a must as a supporter. I try to remember that the person I am supporting is the person who has supported me with everything, throughout my life. The person I help to read a menu or write down the score for our card game is the same person who taught me to how use a fork, and how to shuffle those cards. Remind yourself that you only have this time with them.

I try and encourage her to do the things she is able to do herself and help her where she cannot. Diabetes-related Macular Edema means that often what you see today may not necessarily be what you see tomorrow. This kind of help empowers the person you are supporting to maintain their own independence.

Photo of Jamie smiling wearing sunglasses at a cafe

My advice for others supporting their loved ones

Try to not go through the process alone. There is absolutely no shame in seeking help. Even if you feel as if there is no one there to support you, don’t be afraid to speak with a professional, even if it’s just to have a safe place to vent your frustrations. In order to best help your loved one, you too need support from others. It doesn’t have to be just you, all the time.

I try and do things I enjoy which take me away from my role as a supporter. I like to volunteer my time, attention and energy by participating in animal rescue within my local community. Whether that’s cleaning litterboxes for the cats, brushing dogs at a local sanctuary or driving for hours on end to pick up animals to bring them to the safety of foster homes and rescue organisations. Extra bonus for that last one, since I get to pick the music and get some much needed alone time! These independent activities remind me there is more to me and my life than being a supporter.

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