Tag: ALS Caregiver

There Is Strength in Grief

On By tomstroopsIn Alpha Lima SierraLeave a comment

A serene landscape showing a clear blue sky with bright sunlight and fluffy white clouds above lush green foliage and a wet road.

It sounds backward, doesn’t it? Strength in grief. We don’t feel strong when we’re grieving. We feel broken, small, and wildly out of control. But the truth is, it takes real strength to survive grief, to face the emptiness, push through the fog, and keep getting up anyway.

Strength isn’t smiling through the pain. It’s dragging yourself through the day when even breathing feels like work. It’s making peace with the ache, one shaky breath at a time, and finding purpose again when your reason for living is gone.

Yesterday was Tom’s birthday. It was a hard day. I went to a veteran event that morning and powered through, all the while feeling the weight of the date. By lunch, I was home. I stayed in bed the rest of the day. That’s how I recharge. I let the world fade while I sit in the pain and I try to understand it until I can find my footing again.

This morning was different. I woke up ready to move, not forward exactly, but through. I started cleaning, and that meant facing some of Tom’s things. I pulled out his work awards and plaques. They once lined his office walls like medals of honor, but after his medical retirement, they ended up in the back of the closet and out of sight, but never out of heart. I’d tried to go through them before, but grief stopped me cold. Yesterday, I couldn’t even touch them. Today, I could.

I looked at each one, acknowledged his incredible accomplishments, and recognized something I hadn’t before: they were his. Not ours. His. And that’s okay. With Trey’s support, I let them go.

That’s when it hit me and I heard the words in my head, there is strength in grief. Because every time I sit in it, feel it, and move through it, I build a stronger version of myself.

To my fellow widows and widowers: you’re not broken. You’re not powerless. You are proof that love can hurt like hell and still make you stronger. Strength isn’t shiny, it’s tear-streaked, messy, and real and sometimes, it looks like standing in your closet, holding what’s left of a life you loved, and choosing to keep living anyway.

The Highs and the Lows

On By tomstroopsIn Alpha Lima SierraLeave a comment

This week I experienced both ends of the spectrum: a soaring high and a gut-punch low.

Close-up of a car fuel gauge showing the needle at 'E' (empty), indicating low fuel level.

The Low

The day before an important two-hour drive for a meeting, my car battery died. A dead battery. Something so ordinary, so fixable, and yet I completely unraveled. I lost it in a way that surprised me, and honestly embarrassed me. To say I may have lost my shit is an understatement and I am glad no one was here to see this!

I ended up calling Grant, not because he’s “supposed” to fix my problems, but because I didn’t know what else to do. He dropped everything, showed up with lunch, figured out the issue, and followed me to the store so I could get a new battery. He was steady, kind, and selfless and it overwhelmed me.

I didn’t know what to do with that. Because in my head, that was Tom’s job. Tom was the fixer, the one who handled things like dead batteries and broken appliances and all the little hiccups of life. But Tom died, thanks to ALS. And now I’m here, three years later, still trying to figure out how to carry the weight of all the things.

It’s not that I can’t solve problems. I can. I do. But I’m depleted. My imaginary reserve tank still hasn’t refilled, and it is clearly on EMPTY. The truth is, sometimes even the little things break me wide open, because they remind me of all I’ve lost, and of all the ways my life is different now.

What Grant did that day wasn’t just about the car battery. It was about showing up when I felt small, overwhelmed, and fragile. It was about being seen and helped without judgment. That kindness reached a part of me that’s still grieving, still healing, still learning what it means not to carry everything alone.

The High

The high was meaningful. I achieved an advocacy goal I’ve been working toward for years. It is a win on the ALS veteran and caregiver front that, as it comes to fruition, I will share. It felt like proof that the long nights of research and learning VA Directives, the countless calls and emails were worth it. It wasn’t just achieving an advocacy goal; it was solving veteran/caregiver issues in the moment, knowing that caregivers and veterans don’t have to be scared or afraid of what will happen if their needs can’t be met. I can easily put myself in their shoes, I can instantly remember the fear of going it alone. During my caregiver journey, I just wished that someone would or could help me, but at the time, there was very little help for our ALS veteran community. It is an all-consuming fear. One that you feel for yourself and for your veteran. To think Tom’s livelihood and even his life were balancing on me getting services from the VA, well, it’s one of the reasons I advocate.  During that meeting, I felt like I was exactly where I was supposed to be. And you know what, I was.

The Reflection

Grief isn’t linear, and the impact of caregiving doesn’t end when the caregiving ends. The exhaustion, the emptiness, the muscle memory of always being “on”—they linger. Sometimes, a dead battery is more than just a dead battery. It’s a reminder of everything that’s missing in my life, and an opportunity for someone else to step in and show me I am not alone.

The lesson I’m trying to take away is this: it’s okay to celebrate the big wins and still fall apart over the little things. It’s okay to ask for help, even when I wish I didn’t need to. And maybe the hardest truth of all—it’s okay to let someone else show up for me, even though no one will ever replace Tom.

Because maybe, just maybe, part of resilience isn’t about always being strong. Perhaps it’s about letting people love you through the moments when you’re at a low in your life.

The Ties That Bind: Coping with Loss and Moving Forward

On By tomstroopsIn Alpha Lima Sierra1 Comment

Yesterday was unexpectedly hard for me. In a way, I was not aware of, until my special guy pointed it out to me. Yesterday, I resigned from my part-time job. I resigned because I am ready to focus my energy on something that I am incredibly passionate about: advocacy in the veteran space.

The unexpected sadness that resigning brought, I now understand, thanks to Grant, has more to do with this being another tie that is being cut from my life with Tom. I started working for this company just after Tom was diagnosed. Just a year before, I had transitioned from being an independent environmental consultant to working at a firm. Working for myself was an incredible experience, but I knew that to grow as a professional, I needed to work in a setting that would allow that growth. In the three years I spent at the consulting firm, I learned and grew as a regulatory consultant and project manager and had incredible industry mentors. I loved what I did.

When it was determined that Tom needed a trach, my professional life came to a grinding halt. I had to give up a career I didn’t just love but one I worked very hard to establish myself and my reputation. I had to pass along my clients to others in my office. Clients that I was proud to have.

Tom shared in my professional success. He had a front row seat in it. He was, without a doubt, my greatest supporter and cheerleader. He was also my therapist when I was worried about a project and how I should handle things. He would always remind me that whatever happened, we had each other. Having an emotional safety net allowed me to “go for the brass ring” as my Dad would say. Tom wrapped me in love and support, and that gave me the strength to go for my dreams and not focus on the “what-ifs” of failing. Because of that love and support, I started my own environmental consulting company and later a separate solid waste training company specializing in medical waste management and used by the waste industry in Texas.

After Tom died, I had no idea what I would do moving forward. I got a call from the office asking me back. Not as an environmental consultant, as that department had gone away after Covid, but to come back to help part-time in the office as needed. Going back to work was strange after years of caregiving, but I looked forward to being back with my work family. A family that I could be myself and talk about Tom, and they would get it. Returning to work allowed me to be vertical and get out of bed. Going back to that office was the soft landing I needed after losing my amazing husband. I will forever be grateful for the company and those working in the Austin office.

It wasn’t until yesterday evening that it hit me. Leaving the company I started when Tom was alive was one more step forward in a life that no longer had Tom in it. One more tie, one more connection broken of something Tom and I shared. Last night, as I cried, I thought about how many more ties or connections that I shared with Tom would break in the future. How many more? At what point will my life have very few ties to Tom? That is a scary thought! As I move forward, I will gain new memories and create new ties or connections with those moving forward with me.

Yes, yesterday was heartbreaking. Sometimes, these things hit when we least expect them. I woke up this morning with sadness still in my heart. Like with every part of this widow journey, I have learned I must feel the feels and understand the what and the why until I can accept it and continue to move forward. It is sad that the ties that wrapped Tom and I together as a couple are breaking, but I understand it must happen to make room for new ones. It just hurts when they break and float way.

Do me a favor, if your person is with you, hug them tight and enjoy the ties that bind you in your relationship. If you are in this widow lane with me, I hope you find new ties to bind you to the people in your life that you love and love you.

All my love,

Lara

How long?

On By tomstroopsIn Alpha Lima SierraLeave a comment

Working through the grief journey is hard and at times exhausting. There are also the parts of the grief journey that you have to sit, be mindful and try to understand the “why” behind feelings you are having. So many things I have learned while on this journey, mostly things about myself. Like, I am stronger than I feel most days because after all, here it is, two years since Tom died and I am still standing. I have also learned how to tune in to the “big feels”. To dissect them in a way that helps me to understand why I do what I do. For example, when I am in my feels, I shut down. I find it impossible to do anything but binge watch some show on television. I don’t have energy to even respond to text messages or emails. I can get consumed by feelings and don’t want to engage with anyone. Sometimes it takes me several days and possible a week or so to recognize the spiral down, and sometimes, it just takes a moment to recognize what is happening to me.

This morning I woke up and laid in bed trying to figure out what is going on with me. It hit me as I pondered why I was a useless person this weekend…tomorrow is July 30th.

Picture taken a few months after we married.

July 30th is…scratch that…was our wedding anniversary. In fact, if Tom was alive, this would be our 34th wedding anniversary but sadly we were only married 32 years. I say “only” because we were supposed to be married forever. But the reality is that I am no longer married. However, the tradition surrounding our wedding has lived on, but I have been wondering all day if I should continue it. See, Tom and I eloped on the island of Guam. We went to the JP, no wedding dress, no pictures, really nothing except our dinner that night. We went to the NCO Club on Base and it was so late they only had one choice for dinner. That was steak, potatoe, salad and cheesecake. So that meal we made into a tradition. Having it every year. Even when Tom could no longer eat, we grilled the steak, baked the potato, made the salad and blended it so it could be given through his PEG tube. Last year we had the same meal, but it just wasn’t the same. This morning I went to the store to buy that meal but today it didn’t bring me joy or happiness. It was sad to buy this meal. This special meal that Tom and I would eat and remember that day, July 30, 1990. Before I went into the store I was talking with Grant and asked him, how long do you continue a tradition like this? His response, for as long as I need to. I feel like I need to but maybe changing it up just a bit.

During the ALS years we chose to do transitional Christmas traditions. It worked to help us ease into a Christmas without Tom. Now it seems like that is the answer to my question regarding the anniversary tradition. Keep parts, change parts and make it more of a transitional anniversary tradition. For me, it is incredibly hard to maintain traditions Tom and I created. It is hard on my heart, my soul and my mental health. Let’s be honest, if I think about what might have been, it’s all hard!

This is just another part of the grief journey.

All my love,

Lara

Remodel or Teardown?

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow, Widow and DatingLeave a comment
house renovation
Photo by Rene Asmussen on Pexels.com

This past year I have been remodeling the house to take it from fully accessible to more aging in place with my style added. Well, not really style but vibe. That is how I have styled my home, with a peaceful, calm vibe. It was needed after years of living in the chaos that ALS brought to our lives and home. 

Like the house, I have been under construction but my changes required a full tear down approach. That is because there is nothing to remodel when you are shattered and broken. That is what Tom’s death did to me. My foundation was so shaken that I crumbled under the weight of the grief his death brought me. It took me months to realize that the repairs to my heart and soul would take a tear down and full rebuild to repair the damage the ALS journey and his death caused. This is what a terminal disease looks like for the family on the other side, the beyond. 

Building myself back up has taken time, but brick by brick it is happening. I credit all the things I have done to date to get me to this point. Taking time and allowing myself to feel every emotion, to fully grieve my husband was necessary. It was hard, man, was it hard, but I did it and continue to do it. Feeling all the emotions allowed me to fully tap into who I was as scary as that is and who I wanted to be.  The hot-tub mindfulness, meditation and yoga have allowed me to sit with myself, learn to love myself and be comfortable in the pain and in doing so I found my version of peace and happiness. I found talking with other widows/widowers helped as well in not just normalizing the crazy things I was feeling and thinking but confirming that these feelings and thoughts were not just mine but that others felt the same. It removed the isolation and loneliness that grieving can cause. All of the things I was doing  allowed me to see the world in a different way. To see that I could continue to build myself up so I can have a future I could possibly look forward to living.  That’s a big statement right there folks. When Tom first died, I couldn’t see a happy future for myself and to be honest, didn’t even want to think about being happy again. How could I find happiness when Tom was gone? As the intense grief subsided and I started to see myself healing, being happy again was something I thought was actually possible and yes, I did want it. 

I am finding in this grief journey, the more I let go, the more abundant my life becomes.  Letting go of the intense grief or the guilt surrounding me moving forward with my life and Tom dying. I am reconnecting with friends, making new friends, finding hobbies and activities I like and shocker, I have even begun dating. I wasn’t looking to date just yet, but what started out as connecting with an ALS widower to get through the 2nd year holidays has transitioned into a friendship and now companionship or as I have been saying, my special friend/friendship.  There is a deep level of understanding and mutual respect for what we went through and what we are going through as we navigate life moving forward. I don’t think I would even be able to allow myself to feel happy if I had not done the work and taken the time to rebuild myself into the person I am today. Am I fully restored? Nah, but my foundation is solid as is the framework of this new me. Just like the house remodel,  I am different. There is no way around that but like I talked about in a previous post, this version of me is more authentic. I am more confident in myself and what I want for my future and like the remodel, my vibe is so different than it was before Tom died. 

As the home remodel is coming to a close, I have wondered what Tom would think. Would he like the new look and new vibe of the house? The same goes for me, what would he think of this version of me? I think he would most definitely be proud of who I have become and the path I am on with my healing. He would be happy that I can now honestly say that I am finding happiness in this beyond life of mine. What would he think of the remodel, well he would most definitely tell me there are too many girly touches, but if it makes me happy, he is happy. 

So whether you are a teardown or a remodel, take the time to do the work, understand the journey and the effort and cost in rebuilding is worth every minute and every dime!

All my love,

Lara