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It can be hard to accept advice from anyone, let alone strangers, when you feel your world has been turned upside down.
But there is something powerful about finding someone with a shared experience who understands what you are going through. Their words may ring true and can be easier to listen to and accept because they have lived it too.
Shared experiences can be a source of support
When embarking on something new and difficult, learning from those with lived experience can be a great sense of relief. Sometimes it can be the changes to simple day-to-day tasks that are the most relatable, such as having difficulty signing paper documents by yourself.
A woman who is caring for her husband highlighted that she likes to have everything as organised as possible, because that was something her husband always took pride in prior to his diagnosis. She makes sure that she organises social days out of the house, so that they are not only going out for medical appointments.
But she also understands their new limitations. She doesn’t want to leave him alone for long periods of time, and if he breaks something accidentally, she just cleans it up without telling him to avoid making him feel embarrassed.
Her advice? She believes it to be important to keep a balance, where the person you are caring for can still undertake careful, safe risks to continue feeling independent.
A man who is caring for his father talked about his concerns about leaving him alone and how he used to hold himself back from his own life.
“It’s hard being available all the time, I could only really do one thing a week, like go to church. Even then I was worried about him and ended up leaving him in bed so he wouldn’t fall while I was at church... I stopped doing a lot of other activities on my own but have started to do them again now.”
— a man caring for his father.
His advice? Vision loss can have a massive impact on your day-to-day life, especially while you are still adapting to this big change. But as you adjust, it can become easier to feel comfortable getting back into the things you love to do.
A husband who is caring for his wife with vision loss had a similar experience after seeking the support of Quality Living Groups.
“Down the track, when we were ready a year later, we joined some sessions to talk with other people who get it. They were useful and helped to clarify thoughts and what was going on.”
— a husband caring for his wife who has vision loss.
His advice? Timing is key. Don't force something to happen when you or the person you are caring for are just not ready.
Another woman who was caring for her husband agreed with a lot of the above.
“He went through depression, was very lonely and struggled with the mental side of his journey. He was pleading for help at one stage and he isn’t one to ask for help.
I now have more patience than I have ever had before. It’s nice to know that there are other carers out there going through the same thing.”
— a woman who was caring for her husband.
Her advice? It’s important that you acknowledge that those feelings of being limited, frustrated or wanting to do something just for you are completely normal and necessary.
There is no right or wrong way.
When someone is facing a new challenge, there is no right or wrong way to approach dealing with it. Some people like being informed from the beginning, while others like things to settle down before attempting to make change.
It’s important to remember that every person is different, and their thoughts and emotions may lead them in different directions. But something everyone should feel is empowered to have control over their own life and be involved in the decisions that affect them.
The more you address emotions, the easier they can become to deal with. However, it is never that simple and people have their individual limitations. If you or the person you are caring for aren't emotionally ready, then you may need to give yourself more time to get there.
Good relationships are key
The dynamic between two people can drastically change after a diagnosis. Whether you are caring for someone as a friend, spouse or child, a trusting relationship that goes both ways is needed.
People often come into conflict with others when they are tired or grumpy, which can be increased when dealing with a big change to your way of living. The natural reaction can be to take it out on your loved ones.
But when your loved one is going through a new eye diagnosis and you are noticing a change in their behaviour, it is important to remember that we are all still just people who need each other for support.
To connect with others who share similar experience and to learn how you can better help the person you are caring for, explore our Quality Living Groups.