Cherish Every Moment: A Personal Story I've Never Shared Until Now

What follows is a letter I wrote in June 2012 to some close friends. We were vacationing with my parents, brother, sister and their families in northern Michigan. I haven't shared this with anyone else until now. I'm posting it here to help during ALS Awareness Month. For context, my brother-in-law, Patrick McGoldrick, had been diagnosed with ALS about 8-months previous to this family vacation. My prayers are with anyone facing this horrible disease in their family.

Family picture taken the week this letter was written — June 2012

This past Tuesday night, I was sitting in the living room talking to my brother and dad. It was about 10pm and people were starting to head to their rooms. All the kids were upstairs already, except for Caleb—my brother Joe’s 11-year old son.

Suddenly from the kitchen we heard my sister scream, “Tim, Joe, come now, Patrick is choking!” We dropped everything and ran to the kitchen to find Patrick bent over slightly, gasping in huge, loud gasps—but not being able to get any air. I think I’ll remember the sound of his gasping for a long time—I’ve never heard anything like it.

Dena screamed again, “Someone do the Heimlich on him!” I got behind him, put my arms around him and started pulling. I’ve never done the Heimlich and never seen it done in person. My brother and dad let me know after the fact what I was doing wrong, but it was so chaotic at the moment. Not sure if it worked or not, but after 30 seconds or so of him continuing to gasp—he just stood there, his face turning white, not breathing, just standing still. And then suddenly a large piece of food came up and flew out of his mouth. After that, his gasps were productive, he was finally able to get air.

The whole thing probably lasted sixty seconds, but seemed much longer. Patrick sat in a chair for a few minutes, and after three or four minutes started laughing. I think he was glad to be alive. Caleb was crying, being held by his mom. Dena was trying to stay strong. We were all shook up. I laid awake for hours that night not being able to get the images or sounds out of my head.

The next day, on Wednesday morning, I was sitting outside on the patio when I heard a thump about ten feet away from me. Patrick had been coming down the stairs and lost his balance and fell backwards hard. It took two of us to get him back upright.

Patrick loved to fish — this picture from our vacation in June 2012.

Earlier in the week, he couldn’t get out of bed. And couldn’t get anyone’s attention. He lay there for awhile before someone walking by heard his weak voice. After that we bought him a whistle to wear.

Patrick is an avid fisherman. He loves spending hours on the water. On Saturday, we spent a good hour trying to figure out how to get him on a jet ski so he could go fishing across the lake. With three men trying to help, we couldn’t do it. The next day a friend dropped off their speed boat—and we finally were able to figure out how to get him in the big boat. But he couldn’t cast his reel, so he would troll at low speeds. One day he fished off the dock, and the little guys (Taylor and Caleb) got on the inner tube and physically took the end of the fishing line (with lure and all) out as far as he told them to and dropped it in the lake. Over and over again. They created an improvised way to cast.

I knew this week was going to be challenging, but I didn’t know how challenging it would be. Patrick has lost all ability to do the simplest of functions. He cannot put on his clothes, turn a doorknob, cut his food, get out of a chair, or walk up stairs by himself. His right arm is basically dead, just hanging. His ability to swallow and speak is getting worse by the day. He can no longer talk on the phone, and has almost lost his ability to type for communication. He can barely walk, but it is more of a shuffle.

On Wednesday afternoon, we had a little “business meeting” with Patrick, Dena, my dad and me. They wanted to talk about finances, college, disability policies and more. It was tense. Dena was carrying the unimaginable weight of decisions regarding her kids and college, whether to go back to work, and medical choices for her dying husband.

People are telling her she needs to stay home from work next year (she is a teacher’s assistant, and so would be going back to 30-hours a week beginning in mid-August). She thinks she should stay home—that Patrick needs someone with him all the time. Patrick doesn’t agree. In the conversation, he asked her to be quiet, and then turned to me and dad and asked, “Do you think I need someone with me all the time?” I quickly said, “Yes.” Dad hesitated a second then said, “I agree.” Patrick instantly began weeping hard and loudly. Hearing us say that was like another nail in the coffin of his independence. He hated it.

We talked about creative options—a device to hang around his neck to call for help; a friend who works remotely and offered to work from their house; my dad hanging with him for a day each week, etc.

The truth is—they really can’t afford for Dena not to work. But I tend to agree with her pastor who said to her, “Do you really want to spend the last weeks or months of Patrick’s life working?”

I’ve been observing Paige and Parker all week. They are watching their dad slip away in front of their eyes and it’s definitely not fair. Nothing about ALS is fair. They are in a parent/child relationship with their dad where they take turns “babysitting” him so he is never alone, but also take direction from him for where they can go and what they can do. I don’t know how many times this week one of them has said, “Hey Uncle Tim, can you watch my dad for a few minutes?”

I’ve never traveled with a person who is severely handicapped. I know that millions of people do it. I know no one ever plans for it, you just take what life hands you and deal with it. The awful thing about Patrick’s limitations is they are not static. They are progressively getting worse. It’s not like he broke his neck and is in a wheelchair for the rest of his life. At this point, that would be a blessing. For ALS, there is no end except death. Two months ago I thought he was doing badly, but he could do so much more at that time that he can’t do now. Last January, it seemed like he was deteriorating quickly—and yet he was so healthy then compared to now.

On Monday, Dena and Patrick will be visiting the ALS clinic for the first time since March. Dena is purposed to press them for a prognosis: “How much time does he have?” I won’t be surprised if they say months rather than years. I know nothing about the disease beyond what I’m watching, but I believe his ability to feed and breathe may be gone before the end of the year. I think a feeding tube and perhaps a breathing apparatus may be required.

There have been some days this week when I’ve just wanted to stay in my room—like it’s too painful to come down and watch him slip away. I think back to ten months ago when we all gathered on a nearby lake. He was in perfect health, no symptoms, no health issues. I think forward to a year from now and don’t even know if he will be with us.

But I come down from the room, because as painful as it is for me, it’s nothing like what I know my sister is facing. It is with her every day. She helps him shower and go to the bathroom and get in and out of bed every day. She is facing the prospect of transitioning from being the wife of a youth pastor with two great kids at home—to being an empty-nester widow in her mid-40’s. As I look in her eyes, it seems she has aged 10 years since December. And yet I know her hardest days and weeks are ahead.

Today is our final day here at the lake. And there is a heaviness in the air. Like a finality. Like everyone knows it will never be like this again. Like everyone knows that there were 15 of us this year—but next year it will likely be 14. Or who knows, maybe even less.

It’s why I want to cherish every moment. With every special person in my life. I never know the right thing to say or do—but I do know how to make the space for the moments to be together. That’s what I will continue to do.

Patrick McGoldrick lived another six months until he lost his battle with ALS on December 26, 2012. Make a donation and find other ways to help at The ALS Association.