April 21, 2014
Caretaking for a Sister with Down Syndrome
My four year old sister was diagnosed with Down syndrome. We are both of Mexican-American descent. Our parents were recently deported back to Mexico and due to the fact that I am 25 years old I was granted primary custody of my four year old sister Isabella. I am currently in the Reserves which allows me to provide for not only myself but Isabella as well. I am off during the week and work part time on the weekends. Being a caregiver for a person with Down syndrome has its struggles as well as its rewards.
Down syndrome is a congenital disorder that is caused by a chromosome deficiency and results ...view middle of the document...
Although Isabella is four years old because of her disability it is more like she is two years or even younger. Her teeth are delayed coming in and are a little more sensitive that others and therefore she must be fed softer foods. I provide care for all of her ADLs which include feeding her, getting her dressed every day, bathing, changing her diaper as well as helping her walk. Whether I am at work or home my boyfriend is great with helping Isabella with IADLs. This would include preparing her meals, picking up after her, taking her to the park or appointments she may have as well as doing grocery shopping.
I am not eligible for any type of support as a caregiver which is why I stay home the majority of the time taking care of her. I am in the Reserves which provide us with healthcare and money but due to the fact that I do not bring in enough with just that I have a part time job which I work mostly every weekend. When I am working I need someone to watch Isabella and that is when my boyfriend steps in and helps out. We coordinate our schedule so that one of us is able to watch her as we are hesitant about others watching her at this point in time and the finances are not there to hire someone.
The Impact of Caregiving on the Caregiver
The first empirical study I examined looked at those adolescent children were perceived to have a higher quality relationship with their disabled sibling, especially those with Down syndrome (Pollard, 2013). Ever since I was granted custody of baby sister I feel a greater sense of responsibility and closeness with my sister especially because I know things are hard without her having our parents here. The study showed that those who have siblings with Down syndrome have a better overall sibling relationship than those with siblings without disabilities. However, higher levels of stress were also reported (Pollard, 2013). As rewarding as it is to care for my younger sister at times it is very stressful and frustrating. It is especially hard to deal with on certain days because I think about how I did not chose this for my life but I have to remember Isabella did not chose this for her life either. As we both get older our relationship will continue to grow stronger and stronger. Just as much as I teach her she teaches me a whole lot more.
The second empirical article I read looked at the factor that show family functioning with a child who has Down syndrome which was used with a mixed methods design. Family functioning and marital adjustment were comparable to families of developing adolescents (Povee, Roberts, & Bourke, 2012). Career was shown to have an effect on behavior issues. There are times when I am at work and Isabella starts to act out way more than she normally would and I feel it is her way of expressing that she is mad that I am not there with her. Although Isabella can really only ever remember me taking care of her she frequently talks to my parents and at times I think it is difficult...