Death & Guilt & Moving On

It’s been three weeks.

Three weeks since life ended.

Three weeks since life resumed.

And I still haven’t figured out what to say.

When the process of dying is prolonged, it messes with a person. Not just the person dying but the people who care for him as well. Your emotions trick you and betray you and guilt you and sometimes overwhelm you.

Am I sad? I think so. Do I look it? I doubt it.

Do I miss my father-in-law? I think so. But not the recent him. The him from before. Except…

That smile. His smile over the last few weeks. It was so genuine, so simple, so pure. It lit up his face like a child. It would come on suddenly like a flash of lightning across his face. I couldn’t get enough of it. It stood in such stark contrast to his personality before he got sick. He was fairly negative during the time I knew him. Not toward me. He wasn’t unloving. But his outlook on the world was glass-half-empty.

And now the guilt sets in. How could you? How could you say anything bad at all?

But I don’t see it as bad. Just fact.

 

Guilt.

 

I think it surrounds so much of this process. Guilt at getting my husband for five days at the expense of his father staying in a nursing home that he didn’t want to be in. Knowing that his outlook took a nose-dive the day it was time to go. But overjoyed that I got my husband anyway.

Guilt at hoping for release. Guilt at getting impatient at the rebounds.

Guilt at slipping away to see my mom and leaving my husband there to tend to his dad. Guilt at seeing my naked father-in-law as I helped change sheets and wondering if he knew or cared.

Guilt at getting put out with my husband for not appreciating all that I was doing when he was living a life I can’t even imagine.

Guilt at not bursting into tears when I found out. Guilt at being a little upset that I had been woken up to receive the news.

Guilt at taking so long to write this blog.

Guilt at how quickly I resumed “normal life” after. Guilt at not recognizing that my husband was not resuming normal life nearly as well as I thought. Guilt at failing to notice his struggle.

 

The kids didn’t cry.

 

Jane, when prompted, said she had already come to terms with it. Daryl got still for a minute and then went about what he was doing. Hal matter-of-factly stated, “Two things. First, a good thing. Daddy is coming home. Second, bad. Poppy passed away.”

How is one supposed to act when the news you knew would come finally does? It’s not a surprise. The horror and anguish and anger and great sense of unfairness of it all has already been lived out. What is there to do besides nod and continue on. Say a prayer of… what? Thanksgiving? The suffering is over. Whose suffering? Sometimes I wonder who gets more of the release. The living or the dead.

 

I suppose the dead.

 

Now we have the house and the accounts and the notifying people and decisions, decisions, decisions. My husband has become a monotonous accountant droning on to me about the various options for dealing with this or that fiduciary obligation. I know he needs me to listen, to help him decide, to be present, but…

 

Life doesn’t stop.

 

We need to spend time there. At his father’s house. Sorting through papers and clothes and artwork and… stuff. But basketball. Destination Imagination. Church. Choir. School. Work. Meetings. Bells. Laundry. Dishes.

How can life feel on pause for two and a half months yet not pause now? How did all that stuff get done while we waited, while we were apart? Why is it all overwhelming us now? When do we fit in this settling of an estate?

Despite all these words, I still haven’t figured out what to say.

To you.

To people who express their condolences.

To my husband.

To my children.

To myself.

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Caretaker Crash Course

I am not a caretaker. I have known this in the abstract for a long time – in the same way that I have known I am not a skydiver or a bungee jumper or an educator of small children. I fear I am missing the fundamental skill sets needed to do any of these things well.

I am not patient. I am not tolerant of incapacity. I am not sympathetic for long periods of time. I am self-centered. I do not know how to converse with people of significantly lower mental capacity, whether due to birth, circumstances, medication, or age. I do not know how to act. I am not comfortable.

This is not me being overly harsh with myself. I know I’m a good person. I know I have many positive attributes. But I also know where my strengths lie and where they do not. They do not lie in care-taking.

Unfortunately, we don’t always get to pick the roles we fill. Today, my husband had oral surgery. Two wisdom teeth removed from the left side of his mouth. General anesthesia.

He took his pill as directed before we left the house to drop off the kids. As usual, he drove. After dropping them off and picking up some breakfast for me, we stopped at the grocery store to get his soft foods. I asked if he needed me to go in or if I could stay outside and finish eating.

“Um. I think I can do it but it might be good for you to start driving. If I don’t come out in a few minutes, you should maybe come in looking for me.” I looked up surprised. I wasn’t expecting to be needed yet, but the pill had left him feeling like he had had two large glasses of wine on an empty stomach. “My brain is still processing normally, but I don’t really care what it’s coming up with.”

Needless to say, I ate my biscuit as we walked the grocery store aisles and then I drove him to the surgeon.

I had brought some cards to fill out for people I know who are suffering right now. (Thanks again to the friend who taught me the value of writing.) As I wrote them and worried about my abilities to fulfill my duties for my husband’s care when he came out, I thought about two of the letter recipients. Both were older women who had been caring for their ailing husbands for a long time. One had just lost hers and the other was preparing to.

This awaits me in the future, I thought. Likely, I will someday be caring for my husband long term as I am today.

I’m not going to lie. It scared the you-know-what out of me. Shoot, even just today scares me. I’m not used to being the one in charge. Yes, I am a modern, educated, independent woman. I am the bread winner. I am responsible for many important things at work.

But I’ve also been married to my high school sweetheart for twenty-one years. Since shortly after I moved out of my mother’s home. He is strong and confident and capable. I haven’t had to pay attention to where we are going or what needs to be done. If nothing else, he’s always been there to bounce my ideas off of. I’m a waffler, not a decision maker. But now I’m in charge.

I listened to the doctor give me instructions and, incredibly, managed to come up with important and relevant questions. I waited for the nurse to guide him down the hall. As I reached out for his other arm, she asked me if I had him.

“I guess so, but if he goes down, I don’t think there’s anything I can do to stop him.” My husband has a solid 100 pounds on me. I thought of the absurdity of this petite woman leading this mountain of a man outside. Got him?! As long as he keeps walking on his own, I can guide him to the car, but that’s all I’ve got!

This again paralleled what I’ve heard the older women in my congregation talk about. Husbands falling in bathtubs and having to call sons to help get them out. Not being able to lift them out of bed or help lower them into a recliner. I was likely getting a taste of our old age together. Assuming we are lucky enough to get there.

When we got in the car, I told him that the office lady had suggested picking up the crushed ice at Sonic to use for his ice pack. He commented that it didn’t seem like it had been an hour. I reminded him he had been sleeping. He nodded.

I turned down the main road in town toward Sonic and he asked me where we were going. “To pick up ice at Sonic, remember?”

He stared out the windshield. “Can I get a slush?”

“You can’t drink anything out of a straw, remember?”

He made spooning motions with his hand. “You want to eat it with a spoon?” He nodded. “Ok. What flavor?”

The flavor conversation didn’t go very well. Actually, he didn’t give a flavor at all. Despite having grown up getting slushes at Sonic, he needed to see the menu, where he then chose the same flavor he always chooses and that I had recommended to him at the beginning.

Then he mumbled something to the effect of, “Don’t they still have sandwiches?” I think he might have said “ice cream sandwiches”, but I wasn’t sure.

“You can’t have a sandwich, remember?”

He used his hands to pantomime cutting it up in little pieces and shoving it in the far side of his mouth. “I can cut it up and suck on it,” he said.

“You aren’t sucking on sandwiches. We bought you plenty of soft foods.” He let the request go.

When the lady at the window handed me the bag of ice and the slush, he asked, “We didn’t get any ice cream?”

“No, we didn’t get any ice cream,” I said as I pulled away. “Do you want some ice cream?”

“Ice cream would be nice.”

“You want me to stop at Braum’s?”

“Sicilian Orange would be nice. We have eggs?”

“Yes, we have eggs.”

I headed down the street to Braum’s, wondering how strictly they really meant the instruction that said to take the patient straight home.

As I pulled into the parking lot, he said, “Sicilian Orange would be nice.”

“Ok, honey. Just wait here.”

Ok, I guess it’s not that I can’t do this job. Or even that I can’t do it well. I can do it. I can even smile at his loopy comments. What really has me down, besides the weight of responsibility, is the loneliness. How fun is it to smile at his comments if I can’t share them with him?

I know this is just a day or two. I know that. But I keep thinking about my older friends who have been doing this day in and day out. That man has been their partner in life for years – decades! How impossibly hard is it to do all this work and not be able to share the burden with your spouse? For your spouse to be the burden?

We visited one of the women’s husbands in the hospital. He had been asleep for days and wouldn’t wake up. “I just want him to wake up,” she said. “It’d all be ok if he’d just wake up.”

I felt her pain but I didn’t really get it until now. Loneliness and helplessness, and the desire to have it lifted… even just briefly… by that person you love more than anyone else. That person you’ve shared so much with. That person who lights up your room. Children and parents and friends can help, but they aren’t him. Without him, you feel lost and adrift.

My husband will be back in action soon. I really feel for those women and men who have lost or are in the process of losing their life partners. What a scary journey. I know from my mother’s example that there is hope and light on the other side, but it is still a scary journey. You are in my prayers and if we know each other personally, please know you can call me. Anytime.