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Caring for a Loved One with Scleroderma

After several months of misdiagnoses, switching doctors, and dealing with unexplained and increasingly uncomfortable symptoms, Larry Tucker was diagnosed with scleroderma. But this was really only the beginning of their difficulties.

Eventually, Larry and his wife Marion both ended up leaving their jobs because of the illness and his senior care needs.

Scleroderma is a chronic connective-tissue disease that can, in part, cause a hardening of the skin. Women tend to get the rare disease more than men, but it can hit anyone at any age.

“We had never heard of these diseases, so we were shocked. Especially since we discovered that these were primarily women’s disease,” Marion Tucker said, referring to her husband’s diagnosis of both scleroderma and Raynaud’s disease. The latter is a condition that causes extremities of the body, such as ears and fingertips, to feel numb and cold.

“We began seeing a rheumatologist in December of 2006, and he referred us to numerous specialists — a cardiologist, a pulmonologist, a dermatologist, a nephrologist, a gastroenterologist, and an endocrinologist,” Marion recalled.

After Larry was admitted to the hospital in 2007 and received several transfusions, he was put on birth control pills to constrict his blood vessels.

During this time, the couple both still worked full time in the school system — he as an administrator and she as a teacher.

“I would go to the hospital during my planning period to check on him and return to the hospital after school,” Marion explained. “My administrators and students were so supportive and encouraging during this difficult time. Keeping up with my teaching responsibilities, maintaining things at home by myself, and being supportive to Larry were a challenge, but thanks to so many wonderful family members and friends, I managed.”

Their journey with scleroderma was still in the early stages.

“There are various manifestations that it can take,” said Kerri Connolly, Director of Programs and Services at the Scleroderma Foundation.

Connolly’s own mother had scleroderma and she too learned firsthand the ways in which to help a loved one cope with the sometimes debilitating symptoms of the disease.

“Some people with scleroderma may be sensitive to cold temperatures, so the caregiver needs to help with choosing the proper clothes,” she said.

With the hardening of the skin, it can also be a challenge for some people with scleroderma to dress themselves completely, she said, as buttoning buttons and other things can become impossible.

“It can rob a person of their independence and dignity,” Connolly said.

For Larry, scleroderma developed into a life-threatening illness. In 2011, he received two new lungs.

“Because of the scleroderma and the rigidity of his esophagus, he was required to get a feeding tube to avoid aspiration into his 'new' lungs,” Marion said. “Because of his weakened lungs from the scleroderma prior to the transplant, he had been wheelchair-bound for about two years whenever he got out of the house. As a result, his muscles had lost most of their strength. He could walk only short distances and needed the assistance of a walker in the house. He needed help in showering, dressing, and with personal needs — I took his meals to him, and I could leave him alone for only short periods of time.”

Larry left his job in 2007, and by 2011, Marion realized that being a caregiver for her husband would take priority over her work.

“While I had planned to continue to teach, it quickly became apparent that I needed to be at home to be his caregiver,” she said. “I loved my job, and that was a difficult decision, but I'm so glad I made it. Although the constant caregiving was exhausting, I knew that Larry appreciated everything that I did for him, and our love for each other was strengthened after 40 years of marriage.”

For now, Larry is healing and the scleroderma does not seem to be progressing.

“My advice to caregivers of scleroderma patients would be to be patient and understanding,” Marion said. “It's so difficult to see the challenges that they are facing since many of them are not obvious. I would get so impatient and not understand why Larry couldn't do the simplest of tasks, but once we joined a scleroderma-support group and I heard the stories of other patients, I realized how debilitating this disease is. Reach out to others who are experiencing the same things you are. It's so rewarding to embrace a new family with common concerns.”

Homewatch CareGivers understands how critical a well planned hospital discharge can be. Our local offices can be integral throughout the transition home, whether this is a four hour event or for many days or weeks of assistance, and as flexible as needed. Visit our hospital discharge services page to learn more.

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