CONSUMER > Patient resources > News and Information > Living with Alzheimer’s Disease > Real-life carer stories: Margaret, Jean, Cathy and Barbara

REAL-LIFE CARER STORIES: MARGARET, JEAN, CATHY AND BARBARA

It’s no secret that many carers, whether they are looking after someone with a physical disability, mental health condition or serious illness, are at high risk of extreme loneliness and isolation. This is no different for the 300,000-odd Australians who care for people living with dementia (Alzheimer’s disease being the most common type of dementia).

Recent research found that dementia can be a profoundly isolating diagnosis for both the patient and the carer. People living with dementia often say that friendships – and even some family relationships – suddenly fall away after the diagnosis, possibly because many people do not know how to interact with a friend or loved one with dementia. 

Margaret, 76, knows this all too well. Her husband David was diagnosed in 2012 with mild cognitive impairment (MCI) and then Alzheimer’s disease in the years that followed, and Margaret found her friendships slowly began to fade after the diagnosis: “You do tend to lose a lot of your old friends. They just don’t understand what you’re going through.”

Fortunately, Margaret was able to build new connections when she and her husband joined the Souvenaid® support group, a free, monthly social gathering that allows people with dementia and their carers to connect with others in a similar situation over a casual cup of coffee. 

“We found it a great comfort,” Margaret says. “David enjoyed coming along and meeting everyone else.”

Although David unfortunately passed away in 2017 from a heart attack, Margaret still attends the Souvenaid® support group meetings to this day to catch up with the other members whom she regards as friends and who were there for her in her time of grief.

“I don’t know what I would’ve done without the support group,” Margaret admits. “Having this group has been great company and the support has been terrific. I’ve always been grateful to Souvenaid® for starting up this group. I don’t know where I’d be without it.”

Jean, 71, also felt isolated when she started caring for her 75-year-old husband Herman, who was officially diagnosed with Alzheimer’s disease in 2015. Social outings had become difficult and a friend encouraged her to join the Souvenaid® support group. Sadly, Herman now needs full-time permanent care but this group continues to provide Jean with the support she needs. 

“Now my husband’s gone into care, I’m on my own and I’ve had to re-think everything,” she says. “But I do go to see him most days, so that takes up quite a bit of time. We don’t socialise as much, but I’m just so grateful for this group, and I’m in some other support groups, which makes such a big difference.”

Being part of the Souvenaid® support group allows Jean to freely talk about her situation and know that she has the support of others who are going through something similar. And while Herman is no longer able to join her at get-togethers, she still feels very much a part of the group and is encouraged to participate. 

“I have learned that other people are going through the same thing and that there is help out there,” Jean says. “Going to the support group gives you something to look forward to and making new friends that support one another. Try to be involved with any support groups and accept any help that is offered.”

One of the oldest members in the Souvenaid® support group are Cathy, 87, and her husband Alex, 92. Cathy has been caring for Alex since he was diagnosed with Alzheimer’s disease four years ago and found out about the support group when she was given a free sample of Souvenaid® by Alex’s healthcare professional. 

Both Cathy and Alex have been attending the Souvenaid® support group ever since, and they’ve enjoyed the company so much that they began organising additional meet-ups with other group members to exercise together. 

As Alex’s condition worsened over the years and Cathy’s feelings of isolation increased, Cathy found the Souvenaid® support group to be invaluable because each member was going through similar challenges. 

“You just feel you belong and people understand,” Cathy says of her friends in the support group. “People outside don’t really understand what you’re going through. With the support group, people have the same experience and that’s very comforting.”

Another group member is 74-year-old Barbara, who has cared for her husband Chris since he was diagnosed with Alzheimer’s three years ago. They too lost some of their friendships after his diagnosis, which was “difficult” and “frustrating”, but fortunately they stumbled upon the Souvenaid® support group by accident after leaving their doctor’s office and getting invited by another member.

Barbara says the support group has helped her and her husband make new friends and find new support. They’ve been attending regularly every month for the past three years and Barbara feels they have formed genuine relationships with other group members.

“We’ve become friends, not just people who meet once a month for an hour or so. I’ve met people who I feel like I can speak to over the phone anytime during that month between meetings,” she says. “You have good days and you have bad days and the thing is you realise you’re not alone.”

Currently the Souvenaid® support group meets in Melbourne only, but we are looking to expand our patient and carer support group into other states. To get involved, please reach out to our Customer Care team on 1800 319 420.

To join the Melbourne Souvenaid® support group or find out more about it, call our Support Facilitator on 0400 536 502 or Customer Care team on 1800 319 420.