This is an article by the co-leader of the Aiken, SC Lewy body dementia (LBD) caregivers support group in the local newspaper. The group’s name is “M’Aiken a Difference Lewy Body Dementia Support Group.” In the article, the group leader describes a bit about her husband Nick’s journey with LBD, provides an overview of LBD, and notes the value of caregiver support groups in helping members adjust to the “new normal in their lives.”
Lewy Body Dementia: Journey of Nick
By Nancy Sofge Martin, Facilitator, MADLBDSG
Aiken Standard, maturetimes
June 21, 2017
I started my journey with Nick After hearing about his Lewy Body Dementia diagnosis, I started to learn more about the diseases within the dementia spectrum and my caregiver journey began.
Dementia Umbrella Defined
The dementia umbrella is a way for us to have a mental picture as we understand the various dementia diseases. Dementia is the main term, and the dementia diseases fall in groups below this main term. Some examples of the diseases within this broad dementia spectrum are Alzheimer’s Dementia (AD), Lewy Body Dementia (LBD), Parkinson’s Disease (PD), Frontal Temporal Dementia (FTD). Keep in mind that there are Mixed Dementias (overlapping dementias) and all dementias are not AD. Dementia is quite challenging for family caregivers.
Symptoms may include significant memory loss, hallucinations, lost planning and problem solving abilities, fluctuating alertness and cognition, sleep disorders, balance and falling, language problems and mood changes, movement changes (walking slower with smaller steps and problems using hands and tremors), sense of direction and spatial issues, and severe drug sensitivities.
It generally takes around eighteen months to get a diagnosis because this dementia is either under-diagnosed or misdiagnosed. Fortunately, my husband, Nick Martin’s diagnosis came in about nine months. LBD is a diagnosis that affects all family members. As I was told early in my husband’s journey, “this disease is a hard one.” Of course, I was so overwhelmed with the sudden new normal as LBD took on a very fast progression of dementia, behavior issues, and physical movement symptoms. LBD has been described as Parkinson’s Disease (PD) on steroids.
Nick, a big Clemson Tiger Fan, is a wonderful family man, who is always there for his friends and neighbors. Life was rounded with community activities by serving as the volunteer recreation director and a longtime school board member in his hometown of Blackville, SC. He worked for the State Department of Education and had a very full and happy life before “Lewy” proteins attacked the neurons in his brain and caused the symptoms listed above. Subtle LBD symptoms began prior to 2013 and following a couple of surgeries after other medical issues that year, I noticed that something was terrible wrong.
I was unfamiliar with LBD at the time of diagnosis, his neurologist immediately told me that this one had the potential to be very hard on the caregiver. Little did I know anything about the caregiving journey of LBD that I was beginning. I was an educator and truly not fully prepared for this part of our journey. Since this disease is on a fast train, I had to learn all I could for my role of caregiver and take care of managing his illness, as well as providing all household obligations in a short amount of time.
M’ Aiken A Difference Lewy Body Dementia Support Group
Our support group was started to honor Nick and to guide those caregivers experiencing a change from a NORMAL to a NEW NORMAL in their lives due to a dementia diagnosis. Patrice Tavernier and Linda Lucas came aboard, and their expertise and experience are the backbone of our group. DayBreak Adult Care Services sponsors our group, and we meet the third Tuesday of each month at 11:00 am in their Training and Outreach Center, 151 Lined Street SW, Aiken, SC 29803.
I soon learned that a caregiver must balance everything and the importance of not feeling guilty. Your mental and emotional state are extremely important as you fill the role of a primary caregiver. Is has been emphasized to me that a caregiver has to find respite opportunities and social outlets as the disease progresses. When others offer help, be open and accept it. Bring help into the home as needed to meet the daily demands of dementia care as you reserve your stamina to continue moving forward and protect your health. There is help out there! You are not alone! Caregiving is the hardest job that you will probably ever do.