When the Family Changes- by Courtney Stewart

When the Family Changes

Courtney Stewart

When we are children we do not think that our family unit will ever be affected by disability, whether it be physical, mental, or developmental, and when this happens it can throw the whole family system off balance. Growing up in my family, disability and its consequences was never brought up because we, like many other families, assumed that it would not be a part of our lives. We were wrong.

My mom was diagnosed with Multiple Sclerosis when I was ten years old, and from the time she was diagnosed my entire world changed; there were many times that as a result of her MS she was not able to walk, see, or use her arms effectively. Fortunately, for the first ten years after her diagnosis she was in the relapsing-remitting stage of MS, and each time she had an exacerbation it would last for a few days, weeks, or a month and then she would return to her previous level of functioning. As a child I remember feeling scared each time my mom would have an exacerbation, because at the time I was not as educated as I now am on the course of MS and was not sure if she would ever recover. I do remember feeling that it was unfair for my mom and my family to have this extra burden, but each time she got better the exacerbation, and the MS, were put behind us and not talked about until another exacerbation hit.

The course of her illness tricked my family and did not prepare us for what was to come; because she had been in relapsing-remitting stage for so many years, we assumed that she would stay in this stage forever. It was not until 2000 when we would discover the true nature of MS and the path it can take, and from 2000 until 2005 my family officially became a disabled family. My mom had moved into the primary progressive stage, causing her to lose the use of both of her legs, and over the course of the next five years she also lost full use of both of her arms, most of the sight in one eye, and eventually was paralyzed from the chest down, with limited use of her arms.

My family went through many changes when my mom’s condition worsened, some good but most bad. We all became caregivers; my dad was the primary one when he was not working, my grandparents took care of my mom when my dad was at work, my aunt, who is a nurse, would come over daily to check on my mom and give my grandparents a break, and I would stop by when my full-time work and school schedule would allow. The good part about the changes my family experienced is simply that we grew closer as a unit; sharing the experience of caring for a loved one can be a very stressful experience, and we had to learn on each other for support. We also got to spend a lot more time together, since we were all over at my parent’s house more frequently than we had been before.

The negative changes that my family went through, unfortunately, outweighed the good most of the time. My mom changed as a result of her illness and acquired disability; she was very negative and at times hopeless about her condition, and we all became counselors when her emotions took over. I often tell people that I had two moms – one from the ages of 0-20, and another from ages 20-25; as her condition worsened I had to say goodbye to my old mom and say hello to a new mom.

We all experienced a great deal of stress during this time; we were not sure how long she was going to be like this, if she would get worse, and we often took our stress out on each other or our significant others. Finances also became very tight at this point; I was in college and no longer lived at home, my mom required a lot of medications and special equipment to get around, and my dad eventually hired a full-time nurse to take care of my mom after my grandpa died in 2003 (another stressful event in our lives). Our coping skills went out the window during this time, and we were not putting ourselves first or doing anything to take care of our mental well being because we were so worried about my mom’s physical and mental well being. To be honest, I do not remember how I coped during this time, other than being angry and feeling that it was unfair that I had to go through this at such a young age. To make matters worse, my mom’s illness and disability became the elephant in the room – I do not remember one time that we talked about it as a family or with her in private.

Looking back on this experience, I wish I had done things differently; I was so caught up in the unfairness and injustice of the situation that I did not look at what was really happening and put any effort into trying to make the situation more tolerable. After my mom passed away in 2005 from complication of her MS I was able to look at the last five years and see what other options there were for my family, and that is why I have dedicated my career to helping those who are struggling with grief and loss, which includes acquired and/or lifelong disability. It is only now, almost five years after she died, that I am able to see the good that her illness and disability did for our family, and I have learned many valuable lessons as a result. Unfortunately, many families who are coping with physical, mental, and/or developmental disabilities have this same coping mechanism and do not take action – they let the disability rule their life, and it is not a positive ruler at all. Here are some helpful tips, from my experience and point of view, which can help you and your family when dealing with a disability:

1.       Talk about it: Even though the disability can often become the elephant in the room, it will help to talk about it and how it has affected you. This can benefit the family members who are not disabled and the one (s) who are, because you can express your feelings openly, rather than keeping them inside. The disabled individual often feels like they are alone in their feelings and it helps to know that others are feeling the same anger, pain, sadness, etc they are.

2.       Be honest and prepared: Be careful of trying to sugar coat the disability or make it seem less than it really is. It is what it is, and it does not have to be the end of the world! You need to be prepared for what you and your family will be faced with due to the disability – how will it change your family, what special considerations come with this disability, financial concerns, etc.

3.       Live life: As much as is possible, get out and live! It is also common to stay inside and “hide” when a disability is present, whether to avoid strange looks, whispers, or just because it’s easier. However, this is isolation, which can lead to depression, anxiety, and in those with acquired disabilities, a greater sense of grief and loss over their former life.

4.       Become educated: Learn as much as you can about the disability that has affected your family so that you can understand what the implications, consequences, and most effective treatment (if applicable) methods are. The more you understand about a disability, the better prepared you are to understand how it may (or may not) affect your family. This will also allow you to help others who may also be dealing with this same disability.

5.       Find support: Remember that you are not alone in this process, your family is also with you, but it is also very important to seek outside help. This can be through individual counseling, couples counseling, family, or support groups. A therapist who specializes in this type of counseling understands the unique concerns that families with disabilities face.