In March 2020, Pete Sawyer, a veteran with ALS from central Pennsylvania, spent time in a hospital just as the Coronavirus outbreak was growing in the state. To explain the experience and educate others about the seriousness of the issue, his wife and personal caregiver Lura Sawyer answered questions about what happened and why others should be vigilant.
How and when was Pete diagnosed with ALS?
Pete had been having problems choking and the left side of his face was drooping. This all started back in 2014. He went to several doctors and no one could find anything wrong with him. He was told he had indigestion. They kept giving him pills for that. That was before the drooping left side. After that, they started to look at strokes. He did not have a stroke, either. I started to go to all his appointments. After many appointments, I pushed to get him into Johns Hopkins. They then told him he had ALS. That was April 2015.
What is your experience as Pete’s personal caregiver?
I am doing things I never thought I would ever do to another human. I tell others he is like having a 200 lb. infant. I love him dearly and would do anything for him and that I do. I had to learn how to handle a feeding tube, catheterize him, get him out of bed with a lift, roll him in the bed, how to deal with suction machines, cough assist, operate a wheelchair, and the list keeps going. I love him forever and will do all of this for him until he is ready to stop.
What needs does Pete have due to ALS? How does The ALS Association help with that?
He is bed or wheelchair bound, needing a Trilogy and suction, and has to be showered, lifted in and out of bed. He requires a handicap-accessible van and my full attention. The ALS Association helps me get approval for items I need that come from the VA. (Veterans like Pete are twice as likely to develop ALS and ALS is considered to be a service-connected disease). That includes his hospital bed. The care team at The ALS Association sent the letter to the VA stating he needed a better bed. They watch help us access Liquid Hope food. The VA does not cover this, and it is expensive to buy. They offer free dental care for Pete at HACC, Harrisburg Area Community College. They also do seated massages for the caregivers while Pete is having dental care. This is wonderful. They are also always there to support us and answer any questions that we have.
When and why was Pete admitted to the hospital?
Just in the past 2 weeks we have had a horrible scare. With the Coronavirus going around it is not a good thing to take my husband or myself out of the house. Well, he ended up in the Emergency Department at the VA hospital on Friday, March 13th, with a fever and a couple other issues. They found that he had aspiration pneumonia and a UTI. They sent us home with antibiotics and hoped for him to get better. He lasted until Thursday, March 19th and was back in the hospital again. This time they kept him in the ICU with aspiration pneumonia. I just brought him home Thursday, March 26th, but not before there was another confirmed case there of the Coronavirus. This scared me. If he gets this, it would be the end. I could not visit or make sure he was getting the correct caregiving, as ALS is a different type of beast to take care of.
How were you both impacted by COVID-19 during and after his hospital stay?
We are staying home, besides the hospital stays. We like to be out and about and this has put a damper on that. We have been watching more and more movies. Also, not only do I have my husband currently, but my mother is here with a broken kneecap. She is from Bucks County and I must take her back and forth to her appointments. We wear mask and gloves. I have sanitizer and we wash our hands often.
What should people with ALS and caregivers know during this outbreak?
I still have my help coming into the house. They are doing what is needed to keep themselves safe outside of my house. We wear gloves when working with Pete. We wash our hands frequently for 20 seconds or we sing “Happy Birthday” twice. There is hand sanitizer next to Pete’s bed and we use that all the time. The doorknobs, countertops, and Pete’s room are wiped down 2 or 3 times daily with disinfectant wipes, mail is wiped down and, if not needed, put in the trash right away. Then all deliveries are wiped down and the boxes are placed in the trash outside right away. After I am done with the mail, I wash my hands. Everything is pretty much wiped down when it comes into the house. I also take Pete’s temperature more than once a day. It can be hard to tell if he has any other symptoms of the Coronavirus as he always has congestion.
Hopefully the issue with COVID-19 will end soon. When it does, what do you want people to remember?
That we need to pay attention to what is going on in the world around us. I think if we had started taking care of things earlier that it might not have been as bad.
That we do not need to clean out the grocery stores to make it through a tough time. I am close to needing more hand sanitizer and cannot get any.
To have respect of others that could be at risk with something like this.
In general, that we grew stronger as a loving and caring country that shows respect to everyone.
Lura and Peter Sawyer receive support through The ALS Association Greater Philadelphia Chapter. Please support the Chapter’s mission by donating at www.alsphiladelphia.org