Cheryl speaks about how she realised her mom had Charles Bonnet syndrome
Life is non-stop for Cheryl O’Reilly. Recently retired, she spends many hours each week caring for her elderly mother, Doreen, who is blind due to age-related macular degeneration. She also likes to help out her son who lives at home and spend time with her husband. Despite this hectic lifestyle, Cheryl never forgets her daily exercise or to have an annual eye test and macula check.
“My mother, aunt and my grandfather all had age-related macular degeneration. With such a strong family history I am very aware of the need to maintain my health and have my macula checked regularly,” said Cheryl. “With so much going on in my life I can’t afford to lose my sight. Fortunately to date, I have no signs of the disease.”
“Mum was 73 when she was diagnosed with age-related macular degeneration and now, at 89, she has such little vision that magnifiers are of no use. She has also lost much of her hearing, which makes using audio equipment very difficult.”
I did some online research while we were there and managed to convince the doctor that Mum showed symptoms of Charles Bonnet Syndrome.
“At times Mum has hallucinations that can go on for several days. When she first experienced them she was staying at our home and they were so detailed that she was terrified. We took her to Accident and Emergency and unfortunately none of the medical staff knew what was going on – they inferred she was becoming senile. I did some online research while we were there and managed to convince the doctor that Mum showed symptoms of Charles Bonnet Syndrome, which is associated with significant vision loss. He had mum seen by an ophthalmologist who made the diagnosis. I think the hallucinations are still confronting for mum but I keep instilling in her that there is nothing wrong with her mind. We joke about it with her to keep things light-hearted.”
I think the hallucinations are still confronting for mum but I keep instilling in her that there is nothing wrong with her mind.
Cheryl makes and takes her mother to all her appointments, manages her mum’s household expenses, cooks for her and takes her shopping every week. The amount of time she spends varies depending on appointments – some weeks it might be one full day and on other weeks she’ll visit several times a week. With a 21-year old son at home, along with her husband, there is always plenty to do when she’s not with her mum.
“My brother visits mum regularly and my son often steps in to help but his heavy workload means that can be difficult. We need to make sure people are available to attend to mum’s physical needs and to provide her with some social engagement. I call her every day just to check in and have a chat and she goes on community outings once a week. That social contact is so important to keep her mentally stimulated.”
That social contact is so important to keep her mentally stimulated.