The results of the ALS Focus Caregiver Survey were published recently, and they tell a story that is familiar to many: time is a finite resource, and how we choose to spend our time says a lot about what we think is important.
This survey included responses from over 600 current and past caregivers about their needs and wellbeing. They were asked about topics including the amount of time they dedicated to caregiving, the programs and tools they used as caregivers, how prepared they felt they were for changes in caregiving responsibilities, their concerns about caregiving, and how they assessed their quality of life.
Continue reading Time is a Precious Commodity—ALS Focus Caregiver Survey Results
Today’s blog post is by our intern Bradie Schoemehl, who explains what palliative care is and why it can be beneficial for people with ALS.
By Bradie Schoemehl,
Anyone affected by ALS knows that the loss of the everyday things in life is one of the hardest obstacles to face when battling this disease. The walks around your favorite park are no longer possible; losing the ability to have weekly anticipated outings with family and friends; no longer being able to reach out and grab the hand of a loved one. A person with ALS and their family do not need to face these challenges alone, which is why a palliative care team is so important. Facing this disease head-on is made easier when patients are not only surrounded and supported by loved ones, but also by a dedicated team of professionals. It is the goal of palliative care that patients’ wants and wishes are respected, quality of life is a top priority, and what can be controlled will be controlled.
Continue reading Benefits of Palliative Care for People with ALS
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.
Continue reading Caregiver Advice from Caregivers for People with ALS
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.
Continue reading Perspectives: On Caregiving
Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer. Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.
Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.
Continue reading Caregiver Confidential: Diagnosis and Denial
Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it. It is essential that couples continue to function as partners, and not become only patient and caregiver. Continue reading ALS Caregiving – Preserving Your Relationship with Your Partner