Caregivers play a significant role in the lives of disabled people. Through the years I haven’t had many caregivers because my mom has always been my and my sister’s caregiver. My sister and I were diagnosed with limb-girdle muscular dystrophy (LGMD) at a young age and used wheelchairs to get around. We depended on my mom for everything. My sister is no longer with us, but she is still my caregiver.
I think it’s good to hear from a caregiver’s point of view of what it’s like caring for someone who is disabled. They are just as important as the ones they are caring for. In this column, I asked my mom some questions to help better understand what it’s like to be a fulltime caregiver.
Read more about LGMD etiology
Q. What would you say is the hardest part of being a caregiver?
A. First, I would say being a caregiver takes a compassionate, caring person that takes pride in the job itself, not doing it just for a paycheck. A caregiver of a family member, such as myself being a caregiver for 2 of my children from childhood through adulthood, is a sacrificial love. Personally, I didn’t take the time to think about what came along with being a caregiver. I just did what I had to do. One of the hardest parts of being a caregiver is having to fight for the medically necessary things my children needed.
All the red tape I would have to go through to get these things, like looking for wheelchair-accessible places to live and trying to make sure the doorways are wide enough for their wheelchairs to get through. Another hardship is just watching my children, as well as others suffering, being bullied, mistreated, and the times they have been hospitalized. I still had to take care of myself and make sure my household was still being taken care of.
Q. What would make caregiving easier?
A. Of course, finances; and no, money can’t solve everything, but it would be a big help, as well as having a sound support system. I had a lady that was a volunteer (couldn’t believe it when I found out she was a volunteer because she went above and beyond for us). I know she was a God-send. She was truly a blessing in our lives. I talked to her, cried to her, and laughed with her. She gave me resources and I can’t put into words how much I appreciate her. I will never forget her and she will always hold a special place in my heart because she truly made my job as a caregiver easier. Also, having an accessible vehicle is another big thing that makes being a caregiver easier.
Q. What advice or encouragement would you give caregivers?
A. Pray, and keep God first. Always make sure you take time to take care of yourself because you can’t afford to get down. There will be times you will get overwhelmed, and you just need to cry- release it! But also laugh, and cherish the time that you have with one another. Never make the person you care for feel they’re not loved, valued, or worthless, they deserve love and respect too. Encourage yourselves, as well as the people that you’re caring for, to work together, shop together, and never give up. Pray for yourselves as well as the ones you’re caring for, and most importantly trust and believe in God.
Q. Do you feel caregivers are overlooked in some way?
A. I’m not sure I would say that caregivers are overlooked. I do feel we are underpaid, and I feel our jobs are just as important as doctors and nurses because we do some of the same things they do- we are caring for others. Some caregivers go above and beyond. I’ve also worked outside of the home caring for others, it’s not an easy job. I’ve cooked, cleaned, bathed, and driven to doctor appointments, among other tasks. There is a lot that goes into being a caregiver, it depends on the disadvantages that person has.
