The Letters family has graciously shared different perspectives of their family’s very personal journey with ALS on our blog throughout the past year. In recognition of National Family Caregivers Month, Patty Letters was kind enough to tell her side of the story living as an ALS caregiver.
My husband Bob was diagnosed with ALS in 2017. He was a big strong man who provided for his family using his hands. He had two knee replacements and back surgery before he was even diagnosed. It was just the beginning of our journey.
I worked full-time and he had more flexibility, so Bob started advocating for himself. He finally ended up at the Cleveland Clinic to get the final devastating diagnosis. Caregiving at times can be so isolating, so draining, so incredibly sad. If there is one thing I've learned throughout this experience, it is to build those bridges. Reach out and others will help.
Our daughter, Amber, was there in every way. She started volunteering with The ALS Association to help fight this disease. She was the one who put the positivity in our journey. We were all in shock and luckily our oldest son, Brian, was with us when Bob was diagnosed. He started his caregiving that day.
Our youngest son, Nick, had started his caregiving duties two years before because he worked with his dad and had to witness many a fall. The ALS Association Western Pennsylvania Chapter has been, and continues to be, so amazing. Our family went to our first meeting scared and in shock. We walked away with a community of people that would walk with us throughout this awful journey.
I immediately embraced my role as an ALS caregiver, educating myself and utilizing all the tools that we needed. I didn't sleep at night. I worried all day. I watched for any little change that might occur. I was responsible for keeping this man, my husband, my children's father, safe, comfortable and living for as long as this terrible disease allowed.
I worked full time with kids. I had to leave it at the door and eventually I couldn't. I took a leave of absence and Bob died two weeks later.
Bob was brave, courageous, and in my eyes, was truly a hero. I never really grasped that until he was gone. I used to take a weekend or maybe just a night once a month and stay somewhere else just so I could breathe. Our children would take turns staying with him, as did Bob’s siblings. I shared this with him stating that it was something I had to do for me, and he never said a word.
When you watch someone that you love slowly die, you lose a little of yourself, and that's okay. You have to embrace the fact that you will still be here when they are gone. You have to hold on to that part of you. It gives you strength. Your loved one needs lots of care and that means lots of people in your home. These people eventually become your family. Build those bridges.
As a caregiver take those moments of anger, sorrow and frustration. Feel them, walk through them, and then keep building. You will be rewarded by precious moments, love and kindness. Caregiving is so very, very hard. It comes with guilt. It comes with anger and it comes with heartbreak. There is so much I would like to share. There is so much in my heart, but I feel the most important piece of advice I have to give is to reach out and build those bridges. I have no regrets. We did an amazing job; my husband died with courage and dignity.
Special thanks to Patty Letters for sharing her thoughts about being a caregiver for her husband, Bob. To continue to follow stories about people living with ALS in the community and learn more about the disease, visit our blog HERE.