Before I was diagnosed with ALS, I worked as a cook. It was truly my passion. Even when not working, I would cook for my family and friends. My wife and I loved to entertain friends and family at our home and in our back yard. One of my favorite hobbies aside from cooking is fishing. Fishing gave me a sense of peace and carried me away from life’s harsh realities. I have a son and a daughter and 2 grandchildren, who bring me so much joy.
My wife and I were numb when the doctor told us my diagnosis. After years of not feeling right and months and months of doctors’ visits and after several procedures, I was told that I have ALS and the life expectancy for me was 2 – 5 years. My heart sank and we were both numb. I wasn’t able to talk about it for several days. After the shock wore off, we began to share the news with our children and my family. Our friends and family were saddened and angry, but they all rallied around us with support. My wife has been my rock through all of this. She works so hard and then comes home and takes care of me. Coordinating all my appointments and talking with my social worker and applying for financial assistance is a second and third job for her. Receiving a grant from the Brigance Brigade Foundation has given us breathing room and enabled to us to pay for an aid to come every day and my wife can go to work and focus on her job.
I was raised by my grandmother, who was one of the strongest women I have known. She gave me her strength, but these days I feel like my strength is really tested. When I am feeling beat down, I think about her and what she would do, then I pick myself up and keep going.
Being a full-time caregiver has truly changed my life. There are positives and negatives. I will start with the empty glass. We had to move out of our home last year to a more expensive one-level home as Carlos can no longer use the stairs. I am exhausted all the time. I have to work a full-time job and a second job to pay our bills and medical expenses. When I get home, I have to switch hats and turn myself into a caretaker. I don’t ever get a full night’s sleep because he has to be moved or turned over every couple of hours. The caretaker job does not end with physical caretaking duties, there is the administrative part of the job as well. On top of all this, I feel like I have lost my companion and husband sometimes.
When I finally take a moment to breathe and reflect, I start to feel the glass filling up. I am thankful for many things. I am blessed to work in the medical field and to have an understanding of medication and how to manage his symptoms. Since we shared the diagnosis with our family and friends, people have stepped up and have supported us and have shown us so much love. When my husband and I are able to share quiet moments together, we still laugh and enjoy one another. His spirit is strong and resilient and when I see him fighting for his life, it makes me want to fight even harder.