Michael and Margaret's story

Being Margaret's carer has left me stronger and more determined. Show them you are strong and they get stronger.

Determination, devotion, and the rewards of caring

Anyone meeting Michael and Margaret soon realises the strength of their love, bond and devotion. Michael has dedicated the last 22 years of his life to caring for Margaret almost 24 hours a day, 7 days a week, 365 days a year since her first stroke. Michael has mastered her tube feeding, ensures that she adheres to her drugs, and helped her defy the medical odds. He believes that caring for Margaret at home “surrounded by her loved ones” is the main reason why they still live full, happy and enjoyable lives.

More than 50 years together

Michael and Margaret, who live in Gloucester, forged a deep bond during their 50 years of marriage. They met when they were 19 and 16 years old respectively and married two years later. They have five children, 14 grandchildren, and five great grandchildren.

Margaret almost didn't live to see her extended family. She was a full-time mother and worked as a school cleaner when she suffered her first stroke at just 48 years of age. The stroke affected the left side of her body. Slowly, Margaret recovered. “She still had a few weaknesses, but had almost totally recovered,” Michael says.

Sadly, about a year later, Margaret suffered a heart attack. A year after this, she had a second more severe stroke, which affected the right side of her body and, among other complications, caused problems with speech and swallowing.

Michael loved his work as a carpenter and joiner, and he still works with wood, which he finds relaxing. “I'd always worked,” he says. “But I gave up work to look after Margaret when she had her first stroke. I'd planned to go back to work, but Margaret's medical situation meant this didn't happen.”

Their children were teenagers when Margaret suffered her stroke and they have been a constant support. They all live within 20 miles and help look after Margaret, offering Michael a respite, which from time to time, allows him to take a break for a few days. “I want the kids to get on with their lives,” he adds.

Michael enjoys watching all sports - with a particular passion for rugby - and was a keen darts player and angler. “I was fishing in Ireland when Margaret had her second stroke,” he comments. “I phoned home regularly. On one occasion, Margaret answered, but she couldn't speak - I later found out she was on the floor. I got hold of the kids and my daughter rushed around and got her to hospital, while I caught the first flight home.”

Determination and devotion

The hospital specialist told Michael to prepare for the worst. Margaret was very ill. The second stroke was extensive and the scans suggested that she had about six weeks to live. “This was devastating to me,” Michael comments. “I made up my mind there and then that I would dedicate myself to Margaret for the rest of the time she had.” The fact that 20 years later, she's still living a full life is testament to the family's devotion and care.

“I used to go to the hospital at 3 in the morning to look after Margaret,” Michael says. “I was determined to get her home. So, I got the family together and said we must do something, we must never give up. Slowly things got better and better, although she still has problems, such as incontinence, seizures and emotional outbursts.”

The doctors also underestimated Margaret's determination. She started by moving her foot. With the help of her physiotherapist, she was discharged home three months after her second stroke.

Margaret was still able to swallow food and drink after the first stroke. But the second stroke meant she was nil-by-mouth. After initially receiving a nasogastric tube, Margaret had a percutaneous endoscopic gastrostomy (PEG) tube fitted before she left hospital. Over the years, she has tried several gastrostomy tubes. She found the button tube too tight against the skin as well as causing pain and infections. Margaret preferred a longer balloon tube. “The PEG was a lifesaver. I'm sure we would have lost Margaret without it,” Michael adds. “At first, Margaret was very upset because she couldn't swallow but she's used to it now - she tells me she never feels hungry or thirsty.”

“Learn as much as you can”

Michael advises people in a similar position to “learn as much as you can”. “A nurse in the hospital taught me everything, even how to dress Margaret,” he says. Over the years, Michael has become an expert on gastrostomy feeding. He changes the water and balloon once a week and inserts a new tube every three months.

Michael also stresses the importance of nipping problems in the bud. “You need to stay on top of things and not let things go, even it is something little. You may stop a big problem from emerging,” he says. Michael and Margaret rely on the Nutricia Homeward Service to deliver the feed and supplies. “The service is really good,” Michael says. “We are also in constant contact with the NHS dietitians and the nutrition nurse specialist team. I'm so grateful for all the advice and support we've had over the years.”

Michael emphasises the importance of a respite to recharge the carer's batteries. “Caring can be difficult and tiring so you need a break. I go fishing, just the dog and I. I sit back and watch nature. But we live for today. We never know what will happen tomorrow,” he says.

“Caring for Margaret is so rewarding. Her mobility isn't great, but we still go shopping and the family takes her out, which gives me a break,” Michael concludes. “Despite everything that has happened, Margaret hasn't lost her sense of humour. We still laugh. We still have fun. I still do stupid things to make her laugh. Being Margaret's carer has left me stronger and more determined. As a carer, you need to be strong. Show them you are strong and they get stronger.”

This website should be used for information purposes only for UK patients and carers of patients who are tube feeding. This information provided does not replace the advice and supervision of a doctor, dietitian, or any other member of the healthcare team. It’s important to follow the advice given to you by your healthcare professional.