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 support to hold an object firmly in one place. 
• It is a large business that creates foot traffic or attracts customers, like in a mall or shopping center. 

People can be anchors, too. They can drag us down and hold us back. 

Take a look at the picture above. Is the man trying to drag the anchor, or is the anchor helping the man to stay grounded?

Anchors can help us know where we fit in the world, with ourselves and our connections. 

When my mom passed away in 2019, I was suddenly a 48-year-old orphan. I didn't know where I fit anymore, but I didn't really understand that feeling until recently when my father-in-law passed. 

My husband's brain injury was over 13 years ago. His mom also passed in 2019, which was challenging to navigate, mostly because it was so fresh on the heels of my mom's passing, and we were in the middle of the COVID-19 pandemic. He and his mother were close, and it seemed like the sadness of death lived in our house for years. 

My father-in-law would have been 91 this year. He was mostly a grumpy guy - well-earned for his years. He and my husband talked multiple times each day, starting at 8:30 every morning. They would discuss the news and weather, politics, and gossip. We'd head out most days at lunchtime and call him to discuss how our morning was and what we were doing in the afternoon. We'd chat in the evenings, and he'd complain about the number of spam calls he got all day, and we'd talk about what we were doing the next day.

One of the greatest challenges with brain injury is forgetfulness. You know that feeling when you first wake up in the morning, and you're not fully aware, and you just need to climb out of bed to start your day? What if, while you're waking up, you suddenly realize your dad is gone? Or when 8:30 rolls around and you realize the phone won't ring? You dial his number at lunchtime to check in and remember again. It's an unfortunate and difficult situation. 

In trying to help my husband through his pain and his feeling of not being connected to his dad anymore, I thought about anchors. For people like me, parents anchor us in the world. They are the connection to "their" family - our aunts and uncles, grandparents, cousins, and family friends. Without the anchor, we are adrift, forced to make our own path through the family jungle. We no longer understand where we fit, and we step through the days of grief, hoping to connect with something or someone that makes us feel secure and anchored again. 

As a caregiver (or supporter, as I prefer to be called), my greatest despair has been watching my husband walk through his grief, only to forget and remember again. I'm able to console, but we're adrift together, trying to find our footing. 

Once our parents are gone, doesn't that mean we're "next"? We joke about being the new boss of the family, the trunk of the family tree, or whatever you want to call it, but I'm guessing our parents had the same feelings when their parents died. 

For now, we're going through the motions to put things in order. There are a lot of moving pieces, schedules to keep, and people to notify. Thank goodness for busy-ness. 

Oh, Baby!

 

Many of you know that my husband and I each have four children. My husband has four sons, and I have two sons and two daughters. After his accident, his children were told that he was "faking" his injury. Three of his four boys blocked us out of their lives one by one. We've missed their weddings, buying their first houses, babies, and more than 13 years of memories. It's heartbreaking to imagine the pain and confusion my husband has experienced over the years.

Fast forward to last weekend. My four children and their spouses have been awaiting a baby. My oldest son and his wife have involved us along the way, making us feel like he's the first baby in the world. It's amazing to love someone so tiny in such a big way.

We hope the rest of our children return, and we'll get to know our other grandchildren one day. For today, we're happy with the gifts we've been given. 

Friendships

 

Do you ever think about your friendships? I'm talking about real, meaningful, adult friendships that make you feel like a little kid, deserving of fun and the un-seriousness of being grown up. They're amazing!

When my husband's accident reframed our lives, we each lost many friendships. People either didn't know how to handle what we were going through, didn't like who we were becoming, or didn't like our availability - or lack thereof - and couldn't adjust to what we were comfortable with and what we weren't. 

As the years have passed, my friendship circle has gotten smaller and smaller. In fact, the only friends I have left are those people I work with. Unfortunately, and sadly, even work friends have become so sparse that my husband and I joke that "work friends aren't real friends" because they never seem available outside of office hours and, frankly, some of them aren't people I'd invite over to my house for dinner. 

This year, one of my goals is to make some friends. This is so hard to do as an adult! My priorities for friend selection these days are people I feel safe with - and I feel safe that they will protect my husband as I do. They are fellow caregivers and people who had to figure out how to walk through hard things like I did. Like I do. 

Another priority is to nurture those friendships and to emphasize that they are important. In fact, friendships are high on the list of self-care. They rejuvenate; they connect; they help us identify with people who know our pain and struggles.

Friendship is the language that says, "I appreciate you" and "I want to connect with you, too." 

My husband and I had brunch this morning with a new friend and her husband. I feel giddy! It was so nice to not explain why we needed a corner or an edge - someplace quiet in the restaurant. I could speak honestly about our experiences without feeling judged. When a faux pas happened - as they do and did - we laughed. We laughed every single time.

The feeling of friendship is like having a family member who brings unconditional love and acceptance. I like having a friend. I think I'll do it more often. 100% recommend.

Traditions After Neuro-Changes

 

𝗧𝗿𝗮𝗱𝗶𝘁𝗶𝗼𝗻𝘀 𝗔𝗳𝘁𝗲𝗿 𝗡𝗲𝘂𝗿𝗼-𝗖𝗵𝗮𝗻𝗴𝗲𝘀

I had a recent conversation with my husband about some of the things we did before his accident and how we navigate those things today. Traditions came to mind because it's December here in New Hampshire, and Christmas, New Year's celebrations, and gatherings with people we don't usually see happen almost every day.

Before his traumatic brain injury, which left him with brain fog, PTSD nightmares, the random lack of filter, and exhaustion, we raced through the days leading up to Christmas like little kids giddy to see what Santa Claus would leave under the tree for them.

We visited everyone; we threw holiday parties; we invited many friends and family to our home to celebrate, play games, bake cookies, and spend time together. We braved the mall, the bookstores, and restaurants, and we even went to the occasional First Night celebration, counted down to the New Year, and watched fireworks with a few thousand friends.

David was hit by a car while riding his bike in our neighborhood. His accident was in November, and we were so focused on making him comfortable and letting him heal that we didn't notice that his lingering symptoms from the accident might be forever.

Thanksgiving came and went. In hindsight, it was my first glimpse into what might have been a red flag. We still had five kids at home, so things were always busy. After the cleanup, we took our family picture after dinner, and everyone returned to their everyday lives except David. He went to bed. It took weeks for him to recover. Weariness was always front and center of our daily lives.

Thanksgiving was quickly followed by Christmas and New Year's, where we repeated the "lights are on, but no one is home" story. He was always exhausted. He was easily startled. (This one is difficult with lots of kids in the house.) His PTSD nightmares continued, and I put the brakes on large gatherings. We stopped attending concerts.

We stopped spending time at other people's houses. He doesn't remember any of that first year or the second one. We stopped doing lots of things. Today, he looks at the pictures from that time and says he can see that something was clearly wrong.

As the years passed and holidays were celebrated, we got better at navigating our traditions. When we invite people to our home, the invitation includes a start time and an end time. This adjustment has been vital to David's enjoyment of these gatherings. I've been able to figure out that his threshold for "peopleing" is four hours, and as his advocate, I'm able to enforce the end time with our guests.

We sit on the edge when we go to restaurants or movie theaters. It's the theater's back row for us or a quiet booth in the rear of the restaurant. We're never in the middle of the action anywhere. The only concerts we attend today are those with seats - something I thought only older people did. If the shoe fits, right?

We've created new traditions to replace the old ones, and they're not terrible. We've had celebrations before the holiday, at a restaurant, instead of having everyone at our house. My son hosts some of the holidays and does the majority of the cooking, so we only need to bring a couple of dishes and desserts.

Our world has gotten smaller, but in a big kind of way. The new traditions we've created are more than just adjustments; they're a commitment to each other and our family. Through this, we've found strength in facing happiness in the simple moments.

Our story is not just about adapting to life's twists; it's a source of hope for others on similar paths, showing that amidst change, there's always room for joy and growth.

Guilty Feelings

 

My husband was in an accident that caused his TBI several years ago. Since his injury, I have argued more with guilt than ever before in my life. I walk through "mom guilt," thinking I'm spending too much time paying attention to my husband instead of my children. My company provides "work guilt" when I have to travel, which requires my husband to rely on himself more often. I have "me guilt," where I don't/can't take the time to exercise/relax/get a haircut because I feel guilty for not being available for my husband and family. 

Don't get me wrong: I've always owned a certain amount of responsibility for things over which I have no control! When I was a single mom of four children, I had the "my kids aren't dressed as well as the other kids" guilt. That morphed into their food and friend choices, which led to their college selections (to go or not to go). These days, I feel like everything that goes awry is my fault; however, this blame game is my own doing. Maybe it's because I seldom feel in control of my life and the events in and around it, or maybe because I wish things could be different. 

Every day, I meet or hear about people living normal lives and doing all the right things when something happens to change the course of their journey. Suddenly faced with confusion and many questions, they reach out to those around them for guidance, comfort, and compassion to put all the pieces of their puzzling situation back together. 

Even the simple concept of this type of giving can turn into guilt for me. Feeling the need to fix the world can be overwhelming and quickly turn into more than I can handle. My husband (frequently) says, "Guilt is overrated." I will work on letting go and accepting a little more of those things that are out of my control. 

Do you ever struggle with things that are out of your control? 

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!

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?