We “Don’t Know What to Do with Caregivers”


We “Don’t Know What to Do with Caregivers”


My husband receives treatment at an ALS specialty clinic. We have quarterly visits and meet with a range of specialists, from the neurologist to a physical therapist, nutritionist, occupational therapist, even a social worker. Because this disease is demanding - and while there is no cure - the clinics have gotten pretty good at figuring out how to address the various symptoms and issues presented by the disease throughout its progression.

At one of our visits this past year, the neurologist admitted they still don't know what to do with caregivers.

And this isn't like a 'check in once a week with the patient' type of caregiving experience.

This is a 24 hours a day, 7 days a week, physically, emotionally, and mentally demanding caregiving experience. Caring for someone who cannot walk, cannot use their hands, may have lost their voice and ability to chew food easily... this is a serious and heavy caregiving need.

And even a clinic specializing in how to help the primary patient doesn't know how to effectively support the caregiver that is helping that same patient the entire time outside of the clinic. I've been given very few actual resources or guides or tips other than "take care of yourself, too."

While I often think maybe there isn't a solution to the caregiver needs, I've found many of my own solutions for me. While my system isn't going to fit everyone's situation, I do believe being intentional and strategic about what matters to YOU as the caregiver will pave the way into developing a plan on how to still fit you into your life. How to balance everything is nearly impossible, but if we are not purposeful about what we want our life to look like, even in the midst of caregiving, there is no way we'll effectively cope.

I'd love to know what resources you caregivers have found useful, and what strategies you've developed on your own, whether or not you realize they are strategies. I think we all have answers we didn't realize we had! There is so much collective wisdom we have that we can benefit from sharing.

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Kristen Roden

I've always felt they valued my opinion and include me in decisions where appropriate, as well as trained me on how to physically assist him. I know they consider my involvement as vital in relation to my husband, as his caregiver... It's more that they don't know how to effectively support the caregiver as a person, if that distinction makes sense. The neurologists' comments_mysql were really geared towards not knowing how to make sure caregivers are not burning out and that the primary caregiver is getting effective support from others they need to effectively cope. They understand the need for respite and the ALS Association can provide a limited amount, but there are very few true resources given to help the caregiver take on the new / changing demands.