“The Caregiver” Chapter 28

What does it take to be a caregiver? Your life!

ALSAmyotrophic lateral sclerosis (ALS), caregivers serve as nurse, nutritionist, pulmonologist, phycologist, beautician, physical therapist, contracting officer, spouse, friend, and many others titles.

If the first question is, "what does this mean for the person who has ALS?" Is the second question that goes through the caregiver's mind, “what does this mean for ME?" I don’t think so because a true caregiver never asks that question before jumping into action. They don’t have time, and they certainly don't slow down long enough to care what they are about to do.

The day I came home and told my wife Laura I had ALS, we cried together first and then she looked at me and said, "we will get through this together." What we did not know at the time, though, was what, “get through this together” truly meant.

As the patient, when my body changes I adjust and do what I can. However, for the caregiver, it requires having to put their life on hold.

When this journey first started, I was still taking care of myself. I was a full time worker, volunteer, husband, and dad. Laura was taking care of our home and her business while serving as both wife and mother. Nothing really changed much other than a few minor issues and doctor appointments.

Nine months later, on the day of my official diagnosis, everything changed. By now my speech was slurred and I was having a harder time eating. Laura' duties as a caregiver, without even knowing it, had already began. She was slowly adjusting meals so they were easier for me to eat and helping me with my shirt buttons. Our understanding of what ALS was getting greater and we were now assigned to the DC Veterans Affairs ALS clinic.

Within two months after my diagnosis I was already down 40 pounds, and Laura’s Nutritionist training had officially begun. Laura was enrolled in the School of Hard Knocks and the tuition was paid for by ALS. I was given a G-Tube used to supplement my food to help stop the weight loss. Over the next few months Laura would help feed me, request food changes based on my reaction to the food, and of course, navigate some spills along the way. Since getting the G-Tube it has been changed out three times, the supplement four times, and I'm finally gaining a little weight back. I even found ways to still have my favorite drinks.

Coffee Time

With her Nutritionist degree in hand, Laura turned to her next training as a Pulmonologist. As September arrived I was having issues with my oxygen levels and the ENT recommended a tracheostomy to help me. In October I received my trachea and lost the last of any remaining speech I had left. After 14 days in the hospital dealing with my new trachea and pneumonia, Laura’s training formally began. She quickly mastered the Trilogy: ventilator, suction, cleaning the inner canula, and also teaching others what to do.

Two degrees down already, she them moved onto psychologist. She talks to me, family members, and friends daily, patiently listening to our concerns. Like a psychologist, she offers them a virtual seat on the couch and shares our journey while reassuring them that we are doing well. Everyone leaves feeling better and comforted by knowing that Laura is her taking of me. Never putting herself first, she also never puts her burdens on us.

As I lost more abilities to take care of myself, Laura began her nursing degree next. Pharmacy orders, administering meds, giving me showers, and wiping my ass, she quickly mastered these skills as she had all the others.

Already leading her class with many degrees completed, she moved on to earn her Masters degree of ALS, and she only has a few classes left towards her Doctorate in ALS.

Using her skillful hand and loving touch, she easily moved on to Physical Therapy. As I lose my flexibility, ability to use my hands and legs, she stretches me and massage my muscles. ALS takes your muscles away and maintaining flexibility is critical.

As she quickly approaches her Doctorate, contract and time management were her capstone classes. Setting up schedules to provide for my needs, managing the vast varieties of medical professionals and visitors, she is a master juggler and far better than any in a three ring circus. She is the ultimate advocate that puts on her Superwoman cape and fights for my rights and needs. As the construction of our ADA accommodations begins, she also makes all decisions and manages the contractors daily to make sure everything comes out perfectly.

With her Doctorate of ALS complete from the School of Hard Knocks, she now mentors new students. As my family and friends enroll, she guides them through the process and teaches them how to care for and love their ALS patient.

Not everyone can be a caregiver and not every caregiver truly cares. The love, compassion, and care required takes a special person, and it will change their life. Laura has put her life on hold and we don’t know for how long. Even with nurses and aides she can only get a few hours off physically, but emotionally her responsibility never turns off. Dominique our daughter moved from Hawaii to Virginia and spends every night and weekend at home. She also has mastered many of the skills and will soon graduate as well. Not every loved one who loves their Patients with ALS (PALS) can do it. It really takes more than love, it takes a deep commitment and Godly love to another. Although there are programs that provide some funding assistance, that funding is far from making up the money lost due to caring for the PALS. For a caregiver this is not a chosen career, this is thrust upon them.

Without caregivers, PALS would be hopeless patients in nursing homes and hospitals waiting to die. Our caregivers' love and compassion gives us hope and a will to live. We can be assholes dealing with our feelings and not thinking of those taking care of us. Caregivers give PALS  the option to pass with dignity in their home. I pray to God over my caregivers every morning when I wake and every night before I sleep, and He answers me everyday.

The next time you meet a caregiver, give them a hug, tell them thank you, and that you love them. Spend a little time with them and allow them to tell you how they feel. Buy or bring them a meal so they have one less thing they need to do. Don’t ask them how you can help them, but ask them how can you help them most.

If you are a caregiver or have been a caregiver, thank you for all the sacrifices you make so we can have peace.

Love and blessings