Partnering through Parkinson’s – Carol and Alan

Dean and his team
4th May 2023
International Nurses Day
15th May 2023

Partnering through Parkinson’s – Carol and Alan

Partnering through Parkinson’s – Carol and Alan

The story of Carol and Alan Rose

For 43 years of marriage, Carol and Alan Rose have been partners – not just in life, but for many years in work and hobbies as well.

Alan, a builder and plumber, and Carol lived at Deepwater, in the New England area, for four decades. They ran a successful building business until Alan retired at age 64.

For many of those years Carol worked side by side with him, as they travelled ‘putting houses together,’ as Alan describes those hectic times.

“I used to do a lot of the sawing of the treated pine,” recalls Carol, who says she had concerns about working with the chemically treated timber. “I rang the company and they told me that provided I didn’t use it for firewood it was fine. I’m not so sure now.”

Carol, 77, was first diagnosed with Parkinson’s a few years ago and has since had a tentative diagnosis of Multiple Systems Atrophy, which is similar to Parkinson’s but more severe.

“She is still being treated for Parkinson’s,” explains Alan, 81. “We still don’t know which it is, but Parkinson’s is the closest and we have the most information and support there. Carol doesn’t have the shakes, and it was a very slow progression.

In her early 50s Carol had essential tremor in the head, and then got past that. Then she would fall down sometimes in the early stages, and stumble on walks. She has had some speech deterioration and is losing some control in her hands and in using the computer. I’m not computer literate yet.”

Twelve months ago Alan and Carol sold up their large Deepwater home to downsize and move to Evans Head, where they would have warmer weather year-round and be closer to services and support.

“When we retired we would always travel with our caravan from April for six months each year,” says Alan. “We travelled this section of the New South Wales coast for many years and would sometimes go as far as Western Australia fishing and fossicking. We’d go back and check out the places we liked so when it was time to move we knew Evans Head was where we wanted to be.”

The massive task of downsizing and setting up a new home has taken Alan longer than he would prefer, as he is Carol’s main carer.

“We do get a few hours of housework and gardening assistance, and some meals on wheels and we have a Parkinson’s Specialist Nurse, but I sometimes feel frustrated that I’m not out and working on something,” says Alan, whose time is taken up with daily household tasks for both of them.

“I do have my down days,’’ he says. “But generally we just take things one day at a time. We’ve joined Probus and we enjoy that, and we do the Parkinson’s Support Group meetings which are very informative.

“We live in an over-50s housing complex, and we love it here. People visit and will pop in a few times a day. The biggest problem is if Carol falls over and can’t get up.

“Carol has trouble walking and standing up straight because she has crushed vertebrae. She has delicate skin and cuts can turn into ulcers. It’s so hard for her to do exercises because she can’t go into the pool because of the ulcers. Each problem is only minor, but one thing stops her doing another.”

Alan has put his building expertise into making their home and caravan more accessible for Carol.

“I put in a car ramp so Carol can go from the patio level and take a lift down,” explains Alan. “We have an electric scooter downstairs and one inside the house for her to get around. We have rails inside the caravan so Carol can move about.”

While the long fossicking trips they enjoyed together are in the past, Alan and Carol still enjoy days out and travel when they can.

“We used to go fishing and fossicking and we would dig really big holes,” says Alan. “We dug one 14 feet deep and the top four feet was solid clay! At home I’d cut gemstones and do silverwork and Carol would do jewellery.

“I’m also an artist and paint. We used to do line-dancing and loved it. We’ve always done most things together. Some people have a hard time knowing what to do when they retire but we didn’t; it gave us time for our hobbies.

“These days we still go fossicking when Carol feels like it and I’ll set her up with the shaker-sieve while I’m doing the digging. We are going away to Fraser Island for a week, and we are going on a cruise over Christmas.

“We can’t book too far ahead because we don’t know how Carol will be. But every few months we go away for at least a week. We cope because we take one day at a time, and we’ve always been good mates.”

“We are still trying to do as much as we can,” says Carol. “I’m hoping to increase my exercise and get my mobility going. We are really good mates.

“We’ve worked together seven days a week with long hours and had a few barneys on building sites. We built our own home and got top price when we sold. We’ve packed a lot into our lives and unfortunately this has happened.

“We’ve just got to learn to accept it. Take every day as it comes.”