Eat and sleep regularly. Take time for yourself. Breathe. This is often the advice caregivers receive. Although these are important it’s sometimes not the most helpful or only scratches the surface of what advice caregivers really need, especially for those who are caring for someone with ALS. Based on what caregivers in our area have experienced, here is a list of advice specifically intended for caring with someone with ALS.
By Gregg Ratliff
I feel my wife Nancy was the hero in our family. I was just the parsley on the side of her dinner plate. According to estimates from the National Alliance for Caregiving, during this past year, 65.7 million Americans (or 29 % of the U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative. I was just one of many. I’m fortunate that God gave me a deep love for Nancy and a strength that went beyond my own capabilities. The person being cared for also plays a major role in the caregiver’s capabilities. Nancy’s personal qualities like her resolve, optimism, strong faith, love of life, love for family and love for people in general made my job easier.
When it comes to a disease like ALS, quality of life is challenged on a regular basis as symptoms progress. Receiving treatments and developing a health care plan are important steps with ALS, but doing it alone can be difficult. Having someone help guide those decisions and work with you can make the world of a difference and it’s possible with programs like palliative care. Because palliative care can be hard to navigate, listed is basic information and how it’s different from hospice care.
It is a known fact that frontotemporal degneration (FTD) is connected to ALS and complicates an already difficult diagnosis. In light of World FTD Awareness Week, here are more details on the connection between ALS and FTD. Republished with permission from The Association for Frontotemporal Degeneration (AFD).
The discovery in 2011 that the C9orf72 gene mutation can cause both FTD and amyotrophic lateral sclerosis (ALS) has transformed a long held belief that ALS is ‘purely’ a movement disorder and that FTD is ‘purely’ a cognitive or behavioral form of dementia.
It is now recognized that the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. We now know that several other genes can also cause both diseases. FTD or frontotemporal degeneration is a progressive brain disease with changes in behavior, personality, and language dysfunction due to loss of nerve cells in the frontal and temporal lobes. ALS is a neurodegenerative disease with loss of upper (located in the brain) and lower (located in the spinal cord) motor neurons that leads to paralysis, dysphagia, dysarthria and eventually respiratory failure.
By Gregg Ratliff
Shortly after Nancy’s diagnosis of “Lou Gehrig’s Disease” I read on the ALSA website that “ALS is not just the patients disease, it is a family’s disease.” My care-giving perspective has allowed me to truly understand and validate this statement. Our family’s life changed dramatically over the seven years of Nancy’s illness. It strengthened some things, like our love, our resolve, our faith and our attitude control toward things we faced in life. I personally spend less time worrying and focusing on things I had no control over (which are most things in life). This provided me more time to focus on important and often overlooked things around me. My perspective changed tremendously. Joyce Meyer once said, “Your problem is not your problem. Your problem is your attitude toward your problem.” Marcus Aurelius said it this way, “Our life is what our thoughts make it.” So, anytime I began feeling sorry for myself I simply looked at my wife lying in the bed and said … “Gregg, you have no right to feel sorry for yourself. Be strong for her and yourself!” When I thought Nancy might be facing difficult times I would play music for her, read the Bible to her, pray for her, massage her feet and hands with lotion and remind her how much I loved and admired her.
Today’s blog post is the first in a recurring monthly series from our good friend Gregg Ratliff. In 2009, Gregg’s wife Nancy was diagnosed with ALS, and he became her full-time caregiver for the next seven years, all while still actively fundraising and advocating for people with ALS and their families. In his series, “Perspectives: It’s All in How You Look at it,” Gregg will share his insights on ALS and the impact it has on families.
By Gregg Ratliff
Those of us that have met the curse of Amyotrophic Lateral Sclerosis face-to-face whether it is first-hand as a patient, second-hand as a caregiver or so-called third-hand as a friend or family member we know the cruel reality of this scourge! This disease slowly strips away most of the vestiges of life – movement, speech, swallowing, breathing, self-care and freedom. Yet, the mind and feelings remain totally intact. How fair is that? As my children know one of my sayings to them when they were growing up was “Life is not fair.”
By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter
Although I think of my dad often, Father’s Day always brings with it a special pang of sadness. It’s been 25 years now that I have not been able to spend Father’s Day with him — he lost his battle to ALS in September of 1992. As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives. My kids never got the opportunity to know what a great man he was. My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.