It was 18 days ago that I took mom to the hospital because we weren’t getting anywhere with doctor visits and appointments. She had been dealing with a mucus and throat issue since about December of ‘22. Like many of you might do, we thought it was somehow allergy related so we bought cough syrups and cough drops. We had other doctor appointments for her leg issues which we thought were tied to her back surgery from November of ‘21. But we were having to wait like most people, for weeks to get in. In the meantime, we saw an ENT, and a pulmonologist and she wore a heart monitor for 30 days.

We finally made it to the neurologist and the initial examination led him to consider what mom was dealing with was possibly Parkinson’s or Parkinsonism of some sort. We started meds and she did them for 3 weeks but saw no effects at least to our awareness. So we discontinued and awaited a follow up which would come a couple weeks later. All the while, her voice continued to disappear and eating became harder and harder. Swallowing was met with coughs and spitting up sometimes. She was losing use of her left arm and seemed to be losing her balance.

I don’t remember exactly but at some point early in the year, we made a decision that she would be in the wheelchair anytime out of bed and that she would spend most of her time in bed. She was more comfortable in bed anyway.

Moving on. We had discussed about mid-august that if she continued to have these coughing and swallowing issues when I came back off a scheduled trip, we would go to the ER.

It wasn’t long after I returned from that trip that she started coughing and having trouble breathing and so I brought her to the ER as we had discussed. They took her back immediately because of her shortness of breath and began running tests etc. We were in the ER for a few hours getting tests done along with X-rays. After gathering the needed info, they decided to admit her.

Evidently she had low potassium levels along with a few other deficiencies yet her heart, lungs and brain were all clear. They gave her some breathing treatments and put her on a puréed diet. Since we were in the hospital, the mucus issue was still present and we were finally told she was aspirating. Even though that was a good thing to find out, I wasn’t satisfied with having many other tests run and still no certain neurological diagnosis about why her legs were no longer functioning and both arms seemed to be heading that direction. I asked for a neurological exam while in the hospital.

The neurologist came up and did a simple examination and concluded that she was suffering from late ALS, which brings me to the last 18 days. (Of course some of the things I’ve mentioned happened with us thinking that some of her condition was possibly from a back surgery when she had a couple of vertebrae fused; but how could we have known for sure it wasn’t without all these other tests?)

So yeah. The last 18 days have been difficult and most likely the hardest days over this length ever. I’ve watched my mom slowly lose more and more muscle mass. I’ve seen her go from being able to speak a little to not being able to speak at all. Moreover she can’t even move her open and close her eyes nor can she eat any longer. She is skin and bones and yet her mind is working perfectly. This is perhaps the worst part of what she is going through: she is aware of everything and can do nothing. Just like the rest of us. We are aware and can do nothing. So I sit here watching her take shorter breaths with longer intervals between. I swab her mouth with a small sponge so she can at least have some moisture. I hold her hand and rub her arm so she knows she’s not alone. And I take these final precious moments to say all the things I wish I would have said more often years ago.

Mom has fought hard especially over the last 18 days. She’s never complained. She’s never voiced and anger or expressed any ill will over her challenges, all the way back to the back surgery in November of ‘21. She’s maintained a steady effort to try to walk and even when it seemed that would never happen again, she had a great attitude. In the last 18 days I’ve watched her small frame get even smaller and yet her character grew and grew. When people would come to visit she would use what little energy she had to mouth “thank you”. There was even a time when I was leaving the room and I signed “I Love You” in ASL and she tried to do it back. She almost had it but she gave me the “Rock On” sign instead. I corrected her fingers to get her thumb sticking out so she was doing it correctly, haha. We had a good laugh together.

In all of this there has been so much emotion. In some ways this is all a little unreal. And maybe that’s why I’m writing. I don’t want anyone to miss their chance to say the things they need to say; do the things they need to do. Thankfully, mom and I have had a great relationship, especially over the last 6 years she’s been living with me. Nonetheless, 9 months ago, I wouldn’t have thought we’d be here today but we are. And so I’ve said many things to her the last 18 days that I’m glad she got to hear. She probably needed to hear them more often. I’ve given her a couple of hugs with her in bed but she can no longer hug back. Hug your people while they can hug back and hug them anyway if they can’t! Talk about the important things and be sure to pray together, read the Bible together and worship the Lord together. You won’t regret any of it!

This post is already super long so I’ll conclude for now by saying the last 18 days have been hard ( and there may still be some hard days to come) but they are hard because of the deep love and respect I have for my mom. For those reasons and more, I’ll cherish these hard days because it is a reminder of all that is important and how much she means to me.

I love you mom and I always will. I’ll never forget all you’ve done and the example you’ve set. I knew you were strong and this was just one more way you demonstrated it. Your faith in God has never wavered even though you’ve had many very difficult challenges in life. You have been a faithful servant of Christ and helped build His kingdom over the years. Losing you at all would have been difficult and this way has been hard to deal with to say the least. Yet, you have handled all of it with grace and peace all the way to the end. Thank you for being you and allowing God to teach me so many things through your life and even your departure. I’m proud to call you my mom.

Love,
Your son,
George

At the writing of this post, mom was still faintly breathing. Thanks for your continued prayers for all of us.