At nine years old, I lost my dad. So young, however, so wise to know I needed to help my mom with my brothers and sister. You see, my mom was not well, so I was the “fill-in mom.”
At the age of sixteen, my mom died, leaving six children. As we got older, I found myself caring for four siblings as they were diagnosed with Huntington’s disease. There were no support groups within miles; there was no one who really understood my frustrations, let alone the disease.
I wanted to be the best caregiver; how would I be able to accomplish this? I learned on my own. Watching my sister and brothers decline in health, knowing all I could do was keep them comfortable and advocate to the best of my abilities. Learning through books and practicing over and over.
I now am a Caregiver Liaison. Why? I found myself alone on my journey and want to be there for caregivers. I want to give them resources so they know there is respite available, support groups, and a listener who will not judge how they are caregiving. Be able to give caregivers tips of what went wrong and what went right.
I will be caregiving for nephews and nieces who have the dreaded disease of Huntington’s. I am able to be a better caregiver now as I have skills, knowledge and most important a support group that will listen. There is a saying, “I am doing the best I can with the knowledge I have.”
As a Caregiver Liaison for our community and hospice, I am being fulfilled knowing I am helping others and they are in return helping me as I begin a new journey with family members and advocating for my friends. Their journey is theirs, however, I want to be there for them as they journey on. Caregivers can be on their own journey yet still help others.
I did not ask to be on this journey and I doubt there is any caregiver that wanted to be in the position they’re in. Caregivers are special people and my heart will always be praying for them. My message to caregivers … you do not need to do this alone. There is so much available today, we just need to ask and put aside “I can do this alone.” It is not healthy … remember the person you are taking care of needs you … take care of you so you can be there. Educate yourself and don’t be afraid to reach out for help.
My deepest regret is not asking for help, don’t be one of those. Then realizing I needed time for me to give better care to my siblings, my health suffered then. Grow each moment and be proud of who you are and what you do.
Reference: https://www.caregiver.org/story/caregiver-chance-caregiver-choice/ Reprinted with permission from Family Caregiver Alliance.
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