“Support, Is It Different Than Caregiving?” Chapter 120

When I started my ALS journey, I didn’t realize how much support I would need. 

A caregiver is someone who helps another person meet their daily needs, whether due to short- or long-term limitations from illness, injury, or disability. Their responsibilities can include helping with household tasks, mobility, and self-care, as well as providing emotional and social support. They may also assist with transportation, bathing, and feeding.

But, PALS need far more than "care," we need support. After a recent snowstorm, I watched Laura and Dominique hand shovel the eight inches of snow off the driveway. I might not feel so badly if we had an average length driveway, but noooo, ours is 150 long and 20 feet wide. We live on a pipe stem. What’s a pipe stem you ask? It’s a long driveway used to get to homes located behind a home on the main road. Three years ago I cleaned the driveway myself, but I had a snow blower. When I put it away the following Spring, I never winterized it. I didn’t know I would get ALS and the blower would sit for three years before we needed it. So now I have to watch my family clear snow by hand. This is not the job of a caregiver.

This got me thinking, what else did I do before that I can’t do now? What other tasks are necessary, but not really one that is on a caregiver's list? 

Another huge job is the 15 yards of mulch needed around the yard every year. I used to do this every year myself. The first few years I took this on, I would pickup mulch one truck-load at a time, and it would take me a few weekends. Then I started ordering in bulk and having it delivered, and I could have it done over a weekend. The past two years we were blessed to have friends lay the mulch down for us. Would I die without it? No, but it keeps the yard looking beautiful and the weeds away. This frees up time for Laura and the girls who are already busy enough.

I was really getting into gardening prior to ALS. I worked on garden projects with The Mission Continues (shoutout to TMC). I built new garden boxes for my own garden and was growing hundreds of plants to use myself and to donate to others. I also started Victory Gardens For Vet, providing gardens for Veterans. Over the past three years, my family has been taking care of the garden beds, continuing to grow vegetables and flowers. The gardens provide me a place to for my family to destress and me a place to enjoy, but upkeep is also not a caregivers job.

Two years ago my daughter Chantelle bought a window box bird feeder. The box has a viewing area which sits in our window where the seed is and the birds come in. This year my daughter bought me the “Bird Buddy,” a new feeder with a camera. Both give me peace and a way to pass the time. Both of the feeders need food and cleaning, though. Neither are a job provided by a caregiver.

Over the years I have had many visitors from family to friends. We talk and laugh. Everyone who leaves after their first visit talks about how alert and healthy I look. The misperception of me sitting around doing nothing melts away when they discover how I stay busy volunteering on the “I am ALS" Veterans Committee, answering questions and mentoring others with ALS, writing my blog and book, attending online classes and surfing various things on the internet. All of these are supported by both family and my caregivers, and have been important ways to keep me engaged.

Volunteers drive the van service to take PALS to and from appointments. They teach online and in person classes, and facilitate other activities. Volunteers who support programs that help others are so important for PALS.

Attending church, praying daily, and growing my knowledge of God fills me spiritually. Over the past years, these things have provided me peace, love, and faith.

In the end, taking care of a PALS requires far more than just the tasks typical of caregivers. It takes friends and family to support the things caregivers don’t or can't do. It takes caregivers to take care of PALS personal needs and God to take care of PALS spiritually. It takes a team.

Love and Blessings 

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