Chapter 37: Nine months

 It takes nine months for a cluster of cells to become a baby. Going back a step further, let’s imagine that the little cluster lives in heaven with God. At some point God decides that it’s time to start the process. And so it begins.

The little cluster develops a heart, and limbs, and lungs. He enters the world with a loving family gathered around. They all marvel at the beautiful new baby, and they make sure he has everything he needs. All is good.

As the years go by, the baby learns to walk, talk and feed himself. He builds a life for himself and finds someone to love. Together, they build a family. All is good.

When ALS enters the picture, things start to go in reverse. After a while he can no longer walk, talk, or feed himself. His life is not the same - but his family is. They gather around and marvel at his strength. They tell happy stories, and make sure he has everything he needs. They pray and sing and sit by his bedside. All is good.

Eventually, sometimes as quickly as nine short months, he returns to his God and is welcomed home with open arms. No more tears, no more pain, no more struggles. All is good.

Chapter 36: Things I didn’t know

 I really didn’t know much about ALS. It’s called Lou Gehrig’s Disease. People end up in wheelchairs. Stephen Hawkins had it for many years.

Here’s a little bit of what I have learned:

- ALS can progress very quickly. At the end of August, a person might be able to walk, talk, and eat fairly normally. Nine months later, he may be confined to a reclining chair, unable to walk, talking through a computerized device, and eating through a feeding tube.

- ALS is relentless and unforgiving. Bit by bit, day by day, muscles die and daily functions like driving, cooking and buttoning shirts become impossible.

- The ALS community is small but mighty. There are support groups, community resources, hospice providers and amazing organizations like Team Gleason and Live Like Lou that provide equipment, scholarships, connections and hope to families dealing with the challenges of ALS.

Chapter 35: Friends

People sometimes worry about what to say or what to do in a serious situation. Let me put your mind at ease. All you have to do is show up.

Sit on the couch and tell funny stories.

Bring your guitar and play some songs.

Bring food and people and ask how you can pray.

Take the daughters out for brunch or coffee.

Write encouraging notes in sidewalk chalk.

Tie ribbons around their trees.

Chapter 34: On the other hand

 Perhaps my doom and gloom was premature. Jeremy has settled into a new routine that involves Lorazepam and morphine but also stretches of contentment and communication. He definitely still has his sense of humor.

He finds it easier to breathe if there is air movement and cold temperatures. I can relate, as a super claustrophobic person - air and cold definitely stave off panic attacks. But on a day to day basis, with my own neuroses under control, it is freaking cold in here. Everyone is wearing sweatshirts and huddling under blankets, and my hands and feet are white and numb.

Today Jeremy moved from his office chair to the recliner and Jess said let’s turn on the ceiling fan (which makes it exponentially colder). Without thinking, I said “Do we have to?” 

Jeremy indicated that he wanted to use the eye gaze machine. After a few minutes the eye gaze voice said:

“Thank you for the fan.”

I love him.

Chapter 33: New normal

 Jeremy is sleeping more and more. He is asking for morphine to help with his breathing. When he’s awake, he is not really cognizant of what’s going on around him. When he has visitors, they typically leave in tears.

I like to think of the afterlife as “resting in the arms of Jesus.” I think this will be a wonderful release for him.

Chapter 32: Big changes

It’s hard to even quantify when the latest changes began. Hospice was coming, we were forming relationships with the amazing aides and nurses, and then it just seems like reality set in.

Hospice provides a “comfort kit” with Lorazepam (anti anxiety) and morphine (pain and anxiety and breathing assistance). Jeremy was dead set against all of this. But at night his comfort level became a real problem. He would choke on his feedings, wake Jess up throughout the night, and resist any attempts to help him.

Finally, Jess insisted on a half dose of Lorazepam and a small dose of morphine. Even this didn’t completely solve the problem.

Then, before his aide’s visit this past Tuesday, he typed out the word “bedsore” on his laptop. His aide came and confirmed that he has a sore, and warned us in no uncertain terms that this could develop into something extremely serious. 

It was clear that Jeremy was in pain, and now the instructions were to reposition him every two hours (easier said than done) and treat the sore very carefully. 

He has not been the same since then. He is asking for morphine - which is totally fine. He is clearly depressed and in pain. And he is sleeping more and more. We are all just praying that he can rest and find some comfort. 

Chapter 31: Hospice

 Transitioning to hospice care is a big step. But really it’s not as scary as it sounds.

Yes, it means you need a specialized sort of care. And comfort is the goal, rather than a cure. The implication being, of course, that a cure is not forthcoming. But still - if that’s the reality, let’s accept it and go from there.

Jeremy now has a fabulous aid who comes twice a week to give him a shower. She always greets him with “Hi handsome” and the process is quick, efficient and impersonal (in a good way).

He has nurses who come twice a week to check his vitals and make sure we have all the supplies we need.

We have 24/7 access in case of emergency situations.

And we have a “comfort kit” with basic meds to help with pain and other complications.

So far so good.