During your loved one’s journey with ALS, did friends, coworkers, or medical professionals make well-meaning but insensitive comments? Even the most well-intentioned person can utter inappropriate “words of encouragement” and behave in a hurtful manner. Being around terminal illness can make people uncomfortable, and as a result, they unintentionally say the exact wrong thing. As a caregiver, it’s not uncommon to hear, “It’s God’s will,” “Things happen for a reason,” “I don’t know how you do it,” “I know how you feel,” and “Aren’t you relieved that it is all over?”, among others. Isn’t it preferable to be a good listener, do a helpful chore for the family, or give a hug, which are true expressions of kindness and compassion?
Everyone responds differently when life throws him or her a curve ball, and an ALS diagnosis might be the fastest curve ball life has to offer. Some respond by “hitting that ball back” and go on with life fairly quickly, while others may need more time to adjust to the news and come up with a plan. There is no right or wrong way to feel when faced with this diagnosis.
Most of us have heard about the stages of acceptance, grief and loss. These stages describe different reactions one might have, including denial, anger, bargaining, depression, and ending with acceptance. Acceptance does not mean giving up on hopes or dreams. It should be the first step in making the most of life with ALS. There is much to be done to help someone live a fuller and enjoyable life.
While reading online the other day, I came across a popular saying that I hadn’t seen in a while: “It takes a village.” Although familiar with its general meaning, which refers to the communal raising of children, in a broader context, can’t the concept of a “village” also apply to caregiving for a loved one with a terminal illness? Doesn’t it take many individuals—caregivers, medical and social services professionals, friends, and family members, all working together—to provide the best possible care for an ALS patient?
The toll that ALS takes on a family is devastating – and can strain a family emotionally, physically and financially. The ALS Association helps ease the physical, emotional and financial burdens that often accompany an ALS diagnosis by providing free programs and services to help people with ALS and their loved ones manage this journey. We also have an extensive referral network and can help identify additional support within the community.
Navigating the maze of health insurance is challenging for anyone and can be particularly overwhelming for people with ALS. We’ve compiled some tips and information that may help save you time and energy spent figuring out the complicated web of insurance benefits.
ALS is very difficult to diagnose — often taking up to a year from when the first symptoms appear until a definitive diagnosis is reached. Why is diagnosing a person with ALS such a challenging and long process? Here are a few reasons that can contribute to the delay:
Last week, our national organization featured our friend, Carmen Berkley, on their blog. Carmen shared her morning attending the ALS Certified Center of Excellence at Saint Louis University — the only one in our region. We’d like to share it here with you.
Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.
Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.
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