Tammi Moses’s life in some ways has been shaped by being a caregiver for her late brother Daniel who was born with Duchenne Muscular Dystrophy. She recalls positive memories of her brother and how each member of the family cared for him in their own unique way.
“But caregiving affects more than just the person receiving care. Caregivers, too, are inexorably impacted by their experiences.”
Everyone in the family helped out with Daniel’s care. “My dad did daily exercises to keep Daniel’s legs as operational as possible. He also did a lot of the heavy lifting as my brother’s mobility decreased. When Daniel was a high school freshman, I was a high school senior and I would help him out during our lunch break. We spent our lunchtime eating quickly, getting him a bathroom break and then off to afternoon classes,” says Tammi.
Tammi’s mom was Daniel’s primary caregiver. She admits that she does not know how her mom kept up with all of his needs as his disability progressed. Tammi states, “It’s exhausting and heartbreaking being a caregiver. I am not quite sure how my mother kept up with all his needs. It was such a hard diagnosis and as Daniel aged his care became rather consuming. From bathing to bedpans and needing assistance to even turn the page of a book or itch his nose, it could be very frustrating for Daniel to need that level of assistance for such basic things. Also, it can be frustrating for the caregiver as well, as it can be quite exhausting.”
Being a caregiver to her brother Daniel not only changed Tammi’s life personally but professionally as well. Daniel has motivated Tammi to advocate for families struggling with extreme medical issues.
“There is no greater calling — or sacrifice — than being there for a loved one in intimate ways few outsiders could imagine.”
Tammi gives advice to other family caregivers by saying it is okay to rely on others. “Don’t try to do it all yourself. There is help out there, but you have to be willing to accept it. If you need help with housework, laundry and the errands understand that it is a sign of strength to recognize that you need assistance. If you are able to find someone to do respite care, take advantage of that option and take some time for you, your spouse, and your other kids.”
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