Friday, October 13, 2023

Have You Seen the Bread?

 


After my husband’s car accident, concussion-related challenges seemed to pop up daily. Dizziness and balance issues, constant ringing in his ears, and word-finding problems started immediately.

His PTSD kept us awake at night with terrifying dreams, and his days were spent trying to figure out how to return to work in his newly disabled body. The bills piled up, and everyday life items seemed like great obstacles on our road to recovery.

As we both adjusted to our “new” life, we also faced the funny quirks that came along with it.

Sometimes, he would say things that made absolutely no sense, and we’d collapse into giggles – we still do this today. Sometimes, he would say things that made me blush, and if we were in public, some of those things could be inappropriate.

Usually, he didn’t realize that what he’d said could be hurtful or embarrassing. He was crushed if I mentioned that something may not have been the right thing to say. It was a fine line for me to walk – ignore bad behavior and lose our friends and family or speak up and hurt his feelings.

During those first couple of years, we had a lot of mysteries in our house. Things would go missing – lots of things, like forks and spoons. So many utensils went missing that we emptied the silverware drawer during one meal. We bought new forks and spoons several times during the first five years after the accident.

Since we still had children in the house, they were usually blamed for the missing utensils, drinking glasses, and for using the last roll of toilet paper. When the kids grew up and moved away, and we were still scratching our heads, I realized the problem was bigger than I thought.

Through it all, we have been able to laugh and find humor in the day-to-day hurdles. Now and then we treat ourselves to coffee “out.” This isn’t the kind of coffee we brew in our pot, but instead is made by someone else, exactly how we want it. My husband calls it, “Fancy coffee.”

During one of these coffee outings, we splurged for frozen coffees. Here in New England, there is a Dunkin’ Donuts every couple of blocks, and my husband loves their Mocha Coolattas. (He also struggled with consuming mass quantities of sugary treats soon after his accident, but that’s another story.) If you’re not familiar with the drink, it’s made of frozen coffee, lots of cream, chocolate syrup, and then it’s all blended to a slush. His always came large and covered in whipped cream. To be clear, this isn’t a diet beverage.

After buying our drinks that day, we took a drive out to the beach. We talked about life, our kids, the news, chores around the house, and sang along to the songs on the radio. Eventually, he reached for his Coolatta and it was empty. Still driving, he stared at me for a long time. (My drink was still mostly full.) I figured what the outcome would be, so I wasn’t surprised when he finally said, “Did you drink my drink?!”

This same scenario has played out over the years with candy, French fries, sodas, and coffee. He didn’t believe my answer, and we still laugh about it.

With all of the changes his brain was going through and the noise of a freight train in his ears, he was easily distracted all the time. Random things showed up where they shouldn’t have. There was cheese in the cabinet. The pepper shaker appeared in the fridge. Tennis shoes made their way to the garage as if by magic.

While making his peanut butter sandwich one day for lunch, he called me at work to say he couldn’t find the bread. I’m not normally a sandwich-eater, but I was certain that we had a new loaf, purchased just a couple of days prior. He was disappointed for lunch that day, and it was a priority when I got home from work.

Sometimes, finding things that are put away in the wrong places can be difficult. My first clue was that the toaster was on the counter. We always cleaned it after using it and tucked it into a cabinet. When I looked into the cabinet, there was the loaf of bread, ready to be eaten. Apparently, after breakfast, he put the bread away where the toaster belonged.

At lunchtime, he didn’t connect the relationship between the toaster being on the counter and the bread missing. He is able to realize that this happens now and will usually retrace his steps to figure out what happened.

A couple of years ago, during a time that nothing went as planned and he was repeatedly frustrated, I started a game. An ordinary can of turkey gravy turned up in the living room, next to the television remote. It took him a couple of days to realize that it was there, but he surprised me by asking, “Did I leave this here?” I felt terrible that he thought he actually left it there, but he played the game. The next day, I found it in the bathroom.

The day after that, he found it in his office, next to his phone. We didn’t put it in obvious places, but we didn’t hide it either. It was a way for us to make light of things. It’s not his fault that he’s sometimes absent-minded. If I had as much going on in my body and the noise in my ears that he does, I would be distracted too!

We’ve learned the benefits of routines, which build habits, which create predictability. By the same token, if things are crazy busy, if we have visitors, or even if we have a bad night’s sleep, the “normal” is a little off-kilter and we make adjustments.

Today, he frequently is able to connect the dots, but I do still find things where they don’t belong. Just this morning I heard, “We must be out of bacon,” followed up by, “Found it!” The package of pre-cooked bacon he has every morning for breakfast was in the freezer. Life certainly is interesting with a brain injury!

Wednesday, October 11, 2023

Be Good to Yourself



I try hard with this one because I sometimes forget about myself when my husband has big stuff going on.

"Be good to yourself" isn't merely a collection of words but a gentle reminder of self-care's importance in my caregiver role. It echoes the necessity of acknowledging my needs, emotions, and well-being amidst the challenges. By embracing self-care, I create a foundation of resilience and strength for myself and those I care for.

We recently had Covid for the first time. I tested positive three days before he did. The day I started feeling better and woke up with that "hallelujah" feeling, he was sick. Suddenly, it was like being in a sick ward! I raced around the house while I felt well and cleaned, vacuumed, washed the floors, changed the sheets, and knocked out all of my chores in a couple of hours. 

Thankfully, I was ready when his complaining really kicked in. My daughter calls this "man sick" and she calls it like it is. He moaned and groaned until he took a nap, then spent the rest of the day alternately scrolling his news feed and dozing. I didn't realize how much I'd pushed myself until I finally plopped onto the couch and put my feet up. It's easy for me to keep going, long after I'm ready for a break, but once I stop, it's really hard to get going again. 

I look at caregiving that way: it's easier to focus on my husband, my children, chores, and work, than it is to stop and take note of where I am and how I'm doing. 

We are both on the mend today. The tiredness creeps in quickly now. But every day is better than the last. 

I'd love to hear how you take count of where you are and what you need. Do you set calendar reminders, or just stop when you need it? How do you keep track of you when you're caring for others? 

About HOPE Caregiver Support


About Hope...

HOPE Caregiver Support was created to meet a need that exists everywhere. We aim to inspire caregivers and supporters of those with traumatic brain injury and brain-related challenges. Our safe place is full of hope, ideas, and resources, and I'm happy you're here!

I'm not a medical professional and cannot dispense anything other than common sense and a view from my experiences. 

Why?

My husband was hit by a car while riding his bicycle in our neighborhood. It was November, and in New Hampshire, it gets dark early in November. Apparently, the 16-year-old boy who hit him never saw him. He had whiplash, a concussion, torn ligaments in his foot, and a broken elbow. His helmet was ripped from his head, and, in places, the hair was sheared off. He lost consciousness and doesn't remember the accident, but he has regular nightmares that wake us up.

Since that cold day, we have had neurologists tell my husband that he will never be who he was; we've had psychologists offer to help him file for disability; we've had numerous specialists involved to help with headaches, PTSD, and a wide range of other symptoms resulting from the accident. 

Early on, I realized I needed to advocate for his care. I needed to push back when so-called professionals and other authority figures gave excuses and dead ends. Today, I question everything. I want to know why something is being suggested, why it should help, and what others have experienced. I've learned to seek my answers and ask for help when needed. 

Caregiver Support

What started as a small community of several women discussing their husbands grew into a rather large community of men and women, mothers and fathers, uncles, aunts, grandparents, and friends, who seek comfort and answers to what they're walking through. 

We are happy to share the light of hope. All are welcome here. 


Anchors

  Everyone knows what an anchor is.  It is a part of a boat that holds it to a particular place so it doesn't float away.  It is a suppo...