Devoted wife offers LBD support group at facility her husband founded
Shrewsbury – In 2008, Cathy Flanagan reached a crisis point in trying to manage the difficult symptoms associated with her husband’s disease, Lewy Body Dementia (LBD). She was urged by someone on his medical team to attend a LBD caregiver support group. The closest one to her Shrewsbury home was in Jamaica Plain. Cathy drove an hour and half, fighting rush-hour traffi c to get there. She left the meeting with a sense of hope, new infor- mation about the disease, and the comfort that others understood what she was going through. Recognizing that making that drive regularly would be an added burden itself, the group leader suggested Cathy become a facilitator and form one in her own community where others were also lacking nearby support.
With training and assistance from the Lewy Body Dementia Association, Cathy established a free monthly LBD support group in June 2009 at the continuing care retirement facility Southgate at Shrewsbury Inc.. The location has special meaning to her, as her husband, Donald Flanagan, is the founder, owner and president of the facility from which he retired in 2008 due to his illness. Donald had fulfilled his dream to create a gorgeous place where people could spend the rest of their lives with a continuum of care ranging from mainly independent living quarters to a skilled nursing program next door. Cathy is pleased that by off ering the group there, she not only provides a means for people to gain support and information about LBD–but she is also able to perpetuate Donald’s eff orts of providing services that enhance people’s quality of life.
As Donald’s primary caregiver, Cathy has tried to learn as much about the disease as possible. With his being diagnosed with Parkinson’s disease in 2002, and later developing an onslaught of new symptoms, she found out that his illness was compounded by LBD, a spectrum disorder that can exist by itself or in conjunction with Parkinson’s or Alzheimer’s diseases.
“LBD is very difficul t t o deal with and to diagnose. It can have cognitive issues like Alzheimer’s disease, the movement disorders of Parkinson’s disease, a psychiatric/ behavioral component and the cognitive fluctuations which are characteristic of Lewy Body Disease,” Cathy said, “Any of these alone would be difficult but combinations of these can become quite a challenge.”
Cathy was alarmed to find out that some of the antipsychotic medications commonly used in emergency rooms for agitation and hallucinations can cause dangerous reactions in people with LBD. If someone comes in agitated with hallucinations and the doctors don’t know the person has LBD, the consequences can be irreversible and deadly, Cathy said.
According to the Lewy Body Dementia Association, LBD is the second leading cause of neurodegenerative dementia after Alzheimer’s disease, aff ecting up to 800,000 people in the United States. Despite its prevalence, Cathy said most people have never heard of it and even health care professionals need to be educated about it.
Cathy knows firsthand the stress and toll the disease takes on caregivers.
“Caregivers can feel very lonely and crave information about a disease that is not well known, both of which can be addressed through our support group,” Cathy said, “The main purpose [of the group] is to provide support, hope, understanding and education for members, families, the general public and health care professionals.”
Cathy has seen wonderful results from the group.
“When people come into our group, there’s always somebody who things aren’t going smoothly for. And the group is incredible. If someone’s crying, they’re very supportive; if someone’s stressed: ‘I need a new nursing home, I need a new doctor, I need whatever,’ they’re there with suggestions,” she said.
She’s witnessed the transformation of participants. She said people routinely come in stressed, rushing to get things done at home and rushing to the meeting. “And by the time they get out, it’s like their shoulders are relaxed. There’s a lot of camaraderie there,” Cathy said.
In dealing with a disease where cognitions can be lucid one moment and psychotic the next, Cathy is never sure what each new day will bring.
To learn more about the group, contact Cathy by e-mail at Catmandu117@ aol.com. She can also be reached at (508) 735- 2059. For more information about LBD, visit www.lbda.org.
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