Joe's Story
Living Together with Low Vision
Here is Joe’s story, sharing the stages and events which can be experienced along the supporter journey. The real experiences of family and supporters can provide guidance for others who find themselves in a similar position.
Meet Joe
“I want her to see things that she may not be able to see in the future. Travel has become very very important in our lives - seeing the world before there might be a time that she can’t see it. That’s become a goal of mine.
My name is Joe. I’ve been married to my wife, Jill, for just over 40 years now and Jill lives with wet and dry age-related macular degeneration (AMD).”
The First Signs of Low Vision
Getting a Diagnosis
Everyday Life with Low Vision
The First Signs of Low Vision
At a certain point — sometimes quickly or after some time — families and supporters will either notice changes to vision, or be told so by their loved one. This happened for Joe and Jill during a holiday.
“My knowledge of AMD prior to Jill’s diagnosis was absolutely zero. We were on a cruise as a matter of fact, and Jill was complaining a lot about the LED lights, and that how much they were bothering her eyes. It was concerning but nothing more than that.”
A fear of the unknown can trigger anxiety for family and supporters, particularly if there is a long period between first noticing symptoms and an accurate diagnosis.
My advice at the first signs of low vision
“My wife’s experience with low vision started with some very mild symptoms. I thought this was just the progression of aging and really did not think much of the events. Then Jill experienced an acute change while doing errands with my grandson in the car. Thinking back to that day, I wish I understood the magnitude of Jill’s experience. I wish I was even more sympathetic to the fact that this was a life-changing event.”
Getting a Diagnosis
Receiving a low vision diagnosis can be tough for family and supporters. Sometimes it is a relief to find the cause of their loved one’s low vision. However, the reality of an incurable condition can result in a period of grief. Supporters may feel lonely and unsure how they will be able to help their loved one.
For Jill, Joe’s wife, her diagnosis was particularly overwhelming as it meant she could no longer work as a nurse, something which was incredibly important to her.
It is the numbness of hearing such challenging news that often means those, on first receiving the diagnosis, hear little else from their doctor. They can enter a state of shock. This is where family and supporters play a key role, by not only holding their loved one’s hand, but acting as an extra pair of ears in the doctor’s office.
Early years with Jill in her nurse uniform and Joe
Joe
“When Jill goes to see her macular doctor or her low vision specialist, I’m inside the office with her, not just in the waiting room, but I’m inside the exam room listening to make sure that we both understand completely what’s going on.”
Despite the life changing nature of the diagnosis, family and supporters do not always leave the clinic knowing how their future will be impacted. How much time will I spend in hospital with my loved one? How will the diagnosis impact our finances and my ability to work? Will we still be able to go on holiday or partake in our hobbies? These are just several of many questions that may be unanswered.
My advice for supporting your loved one at diagnosis
“The encouraging part of Jill’s diagnosis is that I am, and continue to be, 100% committed to Jill’s well-being. I had never imagined that I would be the caregiver in our relationship. Jill was always the healthier of the two of us. With all of the negative impact that Jill’s low vision has had on us, we are committed to each other, and we can do this together. We are closer now than ever.”
Everyday Life with Low Vision
As the reality of the condition sets in and family and supporters experience the impact of the diagnosis on their loved one, their aid can take many different forms, both physical and emotional.
Independence is such an important aspect following diagnosis. Many family members and supporters step in to help with transport or jobs around the house. However, completely taking away a loved one’s ability to be independent is not the solution. Joe found this challenging at the beginning of Jill’s diagnosis.
“I find myself sometimes trying to help Jill use her phone, I try and help her maybe do some cooking, and I need to gain more patience and let her just develop her own new ways of doing these things instead of doing it for her.”
My advice for supporting your loved one with everyday life
“Be patient. Learn everything possible about the disease and treatment. Be there for the mood swings and the depression. Be prepared to make any changes in your life to help your loved-one progress through this disease. Try to appreciate the loss that your loved one is experiencing. Make changes in your daily routine to check in on your loved one. Experience new things and travel, at any expense, so that they can “see” the world before things change.”
Jill and Joe attending an event
In Closing
Joe is a paramedic, he has always had a caring nature, and now in his free time he supports Jill as best he can as her safety is of paramount importance to him.
Hear more from our supporters
Jamie’s Story:
Jamie takes an active role in mom Evella’s healthcare for diabetes-related macular edema, helping to maintain both her and Evella’s independence
Tom’s Story:
Tom shares how he has supported his wife Sandy through life after her age-related macular degeneration diagnosis