My life as a Full Time Military Caregiver

I am a military caregiver to my younger sister, Kimberly, who is an Air Force veteran. Kimberly was diagnosed with MS in 2014 and I was her caregiver for a few years. She then went to live with my mother but my mom’s health has recently been depleting and can no longer care for Kimberly so as of October 2020, I have been her full time caregiver.

At the beginning of her diagnosis, Kimberly was extremely needy and had limited mobility. Her cognitive ability was very low and caring for her was a 2-3 person job. I was fortunate and had a friend and outside caregivers to help out, but it was very labor intensive. She has improved tremendously but nonetheless, it is still a full time job.

Kimberly’s diagnosis came at the same time I was opening a second location of my business, a salon. My sister went to live with my mother in Texas and I pursued my business. The interim was very calm and allowed my mom and sister to spend a lot of time together. I didn’t have to give up my business at the beginning which is why I don’t feel robbed by the decision of being a full-time caretaker. When my mom got sick, there wasn’t, and still isn’t, anyone else capable of giving her the care she needs. In the event I was not available to take care of my sister, she would have had to be institutionalized. My sister appears to be 100% good to go; it’s upon sitting down with her and having a conversation or asking her to perform a menial task that you understand the depth of what has happened to her. She is brilliant and it’s sometimes difficult to see who she has become, especially for her children. They don't understand that their mom needs a lot of help so they tend to shy away from her because they don't want to see her in that light.

It was extremely difficult to have to shut down my dream while I was living it. At one point, there was a lot of regret. I dealt with the grief of my decision and my dream coming to an end for a year and the emotions were thick. It was hard to go from making a 6 figure income to filing for bankruptcy and qualifying for food stamps. The change in my lifestyle has been the most difficult; I had no worries about money and spending. What changed my life was this decision to become a full time caregiver and although caregiving comes naturally being the oldest of 3, a mom, bartender and hairdresser, it was a tumultuous road. Caring for my sister is not an easy thing, but it’s not the hardest thing I’ve ever done either. It’s like having a child who needs constant reassurance and guidance.

People often recognize the trials and tribulations caregivers endure, which I of course appreciate, but they don’t see the other side. They remember the things I am going through with her but they miss the things that she's going through with me. She is with me 100% of the time which includes: me being depressed, going to bankruptcy court together, crying with me when I lost my business. Kimberly went through everything with me and has to bear that burden that at some level due to an uncontrollable situation, it happened because of her. She had to watch the aftermath of deciding to put my dreams aside while I had to watch MS take over her life. She deserves some credit.

We deal with issues just like any other sibling relationship. My sister has no romantic life, which is important for a person in their 40s and relatively young to have the option to pursue. She does not have the ability but she has the desire for one. Trust is another hurdle we had to jump over. As adults, we’ve been conditioned to learn not to trust other people; especially when it comes to privacy and medical information. When my mom was taking care of her, it was natural to be more open to a parent. We had to develop and build that trust. I had to reassure her that what I'm doing may not be pleasant, but I am doing it with her best interest in mind. I had to prove over and over again in the beginning that I am never leaving her or let her be alone. Gaining that trust took about a year. We spend a lot of time talking where I’m the shoulder to cry on and the counselor. We have the memories and shared experience of growing up together which is a familiarity that you can build on.

Building that trust was showing her that she's my world, she's my life, she's what I do because it is my full time job. This came to light when handling the relationship with the VA. When it comes to the VA and navigating their system, be persistent. The phrase “the squeaky wheel gets heard” is 100% accurate. My label at the VA is “the sister;” when they see me coming they know I am going to advocate for her as hard as I can and will not accept no for an answer. I am relentless and will end up where I need to be even if I have to go to every single office. The caregivers program is quite difficult to get into. I've been working on it for a year and have still not been accepted but if I get turned down again I will continue to apply. When you decide to take on the job of being a full time caretaker, it is your responsibility to protect and advocate for your veteran.

However, you also need to make sure you’re taking care of yourself. It's really important if you're going to be a full time caretaker to have people to talk to who are or were in the same situation as you. The group that I'm in, Rosalynn Carter Group, meets every 2 weeks for an hour. It was and still is really beneficial to sit down for that hour and share what I'm going through to a group who is going through the same thing. Sometimes it’s just listening and acknowledging our struggles so I can move on and sometimes it's offering advice and solutions. I’ve heard other caregiver’s stories which have helped put my emotions into perspective. The giving and receiving from the group has been invaluable, I'm now in a position where I’m able to offer support, which feels great, and even better when I hear that it worked.

Being a caregiver has allowed me to grow as a person in insurmountable ways. I am grateful for every chapter of my life and I know I still have a lot to live. I am a proud military caregiver.

Learn more

Elizabeth Dole Foundation: https://www.elizabethdolefoundation.org/hidden-heroes.

Hidden Heroes: https://hiddenheroes.org.

Rosalynn Carter Institute for Caregivers: https://www.rosalynncarter.org.

VA Caregiver Support Program: https://www.caregiver.va.gov.