Chapter 30: Wheels

 Over the last couple of days, it quickly became apparent that lurching down the hallway was not going to be sustainable. The hospice nurse suggested using the power wheelchair in the house, but Jeremy was concerned about scratching the moldings and said the manual wheelchair would work better. Ok! All good! Let’s do it!

We are now transitioning from bed to wheelchair to recliner as needed throughout the day. It takes two of us to get Jeremy upright, keep him there, and adjust sweatshirts and blankets. He tends to lean backwards and he falls ungracefully into whatever chair awaits him. Once he is situated he tends to stay for hours… which I’m not entirely sure is a good thing. But he gets to call the shots.

Chapter 29: Baby steps

 Jeremy is much more frail this week. He needs help getting up from his office chair or recliner, and once he is on his feet he struggles to walk even a short distance.

He is restless during the night and spends the early morning hours sleeping in his recliner. Around 10:00 he goes into his office where he watches mindless video clips. By 1:00 or so he is ready for a long nap in the recliner. 

All of this is totally fine of course. He can spend his days however he likes. But it’s a big change. He looks exhausted and it’s clear that he needs 24/7 attention. 

Chapter 28: Hospice came and God showed up

 We have been thinking for a while that in home hospice care might be helpful. Jeremy needs help with dressing, showering, tube feedings etc - and while we are all here to help, there are certain tasks that are getting more difficult (showering in particular). 

Normally, to qualify for hospice you need a prognosis of 6 months or less. But since ALS is invariably fatal, the rules can be bent a little. We had a hospice rep come to the home, and the benefits are pretty amazing.

Medicare pays for all of the hospice services, including supplies, medications, in home nurse visits 2x a week, caregiver visits up to 5x a week, 24/7 phone access, emergency home visits, etc.

Yesterday the enrollment rep Kyle came to the house. At first he was a little cold and clinical. He took Jeremy’s vital signs, asked a lot of questions and took a lot of notes. It was a little uncomfortable until Jess broke the ice with a comment about how their girls refuse to watch movies “from the 1900s.” He burst out laughing and the whole situation relaxed.

A few minutes later, Kyle noticed a framed poster on the wall, with the lyrics to a Christian song called “He Won’t.” Jess had it made for Jeremy’s birthday and it’s in a prominent place in the living room so Jeremy can see it from his favorite recliner.

Kyle’s eyes went wide. “Those are song lyrics,” he said. Jess said yes, it’s been their “anthem” ever since the diagnosis. “That’s amazing,” said Kyle. “I was an atheist all my life but I found Jesus about a year ago. The first time I went to church, that was the first song they played.”

He talked about his faith and his wonderful church and told us the church had recently videotaped his testimony and was going to use it to open the Easter Sunday service. Jess shared some of their story as well, including how God used friends to bring them together and how He has always been a faithful presence in their lives.

The song that means so much to all of us is Firm Foundation (He Won’t) by Cody Carnes

https://youtu.be/uOP4s8fOEm0?si=mDecmdf8yu58IV8y