Category: ALS Caregiving

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

Rewriting the story I tell myself

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving, Living Life to the Fullest, WidowLeave a comment
person holding hardcover book with blank cover
Photo by Monstera Production on Pexels.com

That’s right. I am writing a new story I tell myself or at least trying really hard. Today, I turn 54 years young. While this number may have been one that I dreaded pre ALS, it is one that I now embrace, even with it marking a very important time in my life. The importance of turning 54 is that Tom was cheated out of this age by ALS. He died at 53. Tom was older than me by 17 months. Last year, we were the same age and this year I am older than him. My 46 birthday also marked the day we heard the words ALS. I celebrated my 49th birthday in the hospital with Tom, just less than a week after his trach surgery in 2019.

I am not going to lie, it takes a lot of healing and self reflection to change and believe a new story, but that is exactly what I am doing. If I continue to live with the the memories surrounding my birthday or any significant day, without acknowledging it, understanding it and not getting sucked in to the sad parts of it, I will never grow. Never heal. Never learn to accept what has happened. Accepting does not mean forgetting or being okay that something bad has happened. Accepting means processing it, and learning from it and finding gratitude with my new life that the event created.

Today, my story is that I am embracing the fact that I get the chance to turn 54. I got to wake up and experience a new day. Being grateful for being alive and having the opportunity to create a new life for myself. That is how I honor Tom. Not by sitting in my grief till it swallows me whole, but by allowing it to be a reminder that life, love, happiness and peace are so very precious.

So here’s to my new story, I am 54 and I am have so much gratitude for making another trip around the sun.

All my love,

Lara

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow1 Comment

Peace. Hope. Happiness. All feelings that have seemed incredibly foreign to me for a long time. I have spent the time since Tom’s passing searching for them. I know there have been quite a few blog posts and definitely some episodes in mine and Mary’s podcast ALS Caregivers and Beyond about this topic. This morning, I caught a glimpse and felt peace, hope and happiness. It was in the most unexpected place, in my backyard just outside my bedroom door.

I need to give you a little back story for you to fully get the epiphany I had. Tom has always wanted a hot tub, but it was always in the conversation that began with, “One day…” When Tom was diagnosed with ALS our “one day” statements stopped and we began to make them happen. So, one day, we bought a hot tub. I saw it as Tom’s hot tub. He loved it. He climbed into it any chance he could and would spend time just soaking in it listening to his music. Then he became paralyzed, trached and vented. His hot tub days were over and for the most part, so were mine. Instead of ensuring the chemicals were good or the temperature was just right to use, I checked these things periodically because I had to. When Tom died, I hated that hot tub. I have told Trey so many times, that we just needed to drain it and get rid of it.

So now that you are caught up on my hate/hate relationship with the hot tub we can proceed with the story. So, I was chatting with a friend who really likes their hot tub. Like, in it most mornings and sometimes early enough to see the sunrise. They said it was relaxing. So, since I am on a quest to find relaxing things to do in hopes that the elusive peace and happiness I have been searching for will find me, I got in the hot tub Christmas morning. While it was warm and felt nice, and possibly helped me do something that was not my normal on such a traditional day, I didn’t really find peace and happiness. But, this morning I awoke at the ungodly hour of 4:45 am. I know, I have no idea why either probably has something to do with the sick joke the universe plays on people that are getting older. While I did lay in bed just wishing to go back to sleep, I pondered if I should jump in the hot tub. I of course talked myself out of it a few more minutes because it was too dark…creepy critters hang out in the dark. It was also too cold. I mean who wants to go run outside in a bathing suite at that time of the morning and with the temperature around 33 F. Too early and too damn cold. So, I got up, put my bathing suit on, grabbed my portable speaker and phone and headed to the hot tub. I found that before I could get in, I needed to add water because the tub was making a weird sloshing/sucking sound which meant, add some water. So as I grumbled to myself that this was bullshit, it was cold and too early I went and grabbed the water hose to add some water. After what seemed like I was standing in the cold forever, I had enough water. As I ever so gracefully climbed in, so those that know me should have probably laughed a bit, because I am far from graceful, the warmth of the water started to settle the frustration I had been dealing with regarding the early hour, the cold, the not enough water, etc.

In the dark, quiet of the early morning combined with the warmth of the water, my mind started to settle. I could feel myself relax. Something I never really stopped to really pay attention to was the feeling of sitting in a hot tub in the cold. I get it now. I listened to some soothing piano music, and not just watched but felt the day begin. The tree’s that earlier had just seemed like flat silhouettes on a painting came to life as the sun came up. The quiet of the early morning changed as I heard the birds starting to sing to greet the new day. My friend Mary would say that I was being mindful. That I was living in the moment. I was. I also found that while I was aware of the day beginning I was also aware of thoughts floating in and out of my head. I was, what I now understand, had been doing my own morning meditation. Which is completely strange as I have only been ever able to do guided meditation, but this was not that. This was something altogether different. Today, in the wee hours of the morning and for the first time in a very, very long time, I felt peace and gratitude. Not just peace about losing Tom, but it was this overarching peace about my life-my past, my present and my future. I felt gratitude for being able to experience the beauty that happens when the day begins. For so long, I have felt the need to be on-guard. To be ready for anything. To handle any situation. To. Be. In. Control. The feeling of needing to be “on guard” didn’t seem to have as much power this morning. I felt like I could be me, the old Lara, the Lara that didn’t know ALS and the often unbearable heartache of losing the love of your life. I know I share a great deal with you in this blog, but keep in mind, I share what I want. I have never shared the really raw, hard stuff the things that often take me to my knees and would probably compel you to call in a welfare check on me.

This morning, I remembered it was okay to be vulnerable. Not in a powerless way, but in a way that allows me to feel and be in the moment. In a way that I see I need to be in order to heal. The version of me that is the person Tom loved. Someone who felt safe enough to be honest and vulnerable with him. In my healing, I am working on creating that same space for myself. This morning was truly transformative for me. I learned I needed to meet peace in the middle. I have to do the hard work for peace and happiness to find me. Who knew, that the real journey to finding them would be just outside my door should I choose to wake up at the butt crack of dawn and brave the cold to find them. The reality is that today is a good day. Tomorrow, I may not open that door and let the morning come without me witnessing it, but that is okay. It’s my journey!

Heroes and History Makers-Gala

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving1 Comment

Amazing. Beautiful. Energizing. Heartfelt. All words to express my thoughts on the Elizabeth Dole Foundation’s Gala. I have one more but will save that for later.

The Gala is not only the Foundation’s fundraising event but also a chance to spotlight caregivers the Foundation supports as well as those sponsors that help support the Foundation. It was beyond my expectations in many ways but more importantly I underestimated how this event would make me feel or how the Gala would fill me with gratitude.

Let’s get some of the initial thoughts out of the way…First, who doesn’t like putting a fancy dress on and going to a good party-This girl definitely does. Second, the ability to be in the same room with the Doles, Tom Hanks, Rita Wilson and of course Michelle Obama was so very exciting. Third, meeting the sponsors and donors that help the Foundation carry out its mission gave me along with the other Fellows our ability to show our appreciation.

Just how did this event fill me with gratitude? Well, I had been keeping a secret for several weeks leading up to the event that was shared that night by non other than Tom Hanks. The Foundation launched a new campaign called the Tom Hanks’ Caregiving Champion. When you join this campaign, you are given a Caring Tag. The Caring Tag is inscribed with the name of a military caregiver, along with their family’s story. The tag is a symbolic token of the support you will provide to the 5.5+ million military and veteran caregivers nationwide.

Drum roll….I was asked to be the first caregiver identified on the caring tag. The Big He is mentioned as well as my veteran/spouse. Tom Hanks introduced the new campaign along with our story. The words, service connected ALS, were mentioned in a room of close to 1000 people, many were hearing it for the first time. The awareness that occurred in a moment was more than I could have ever dreamed. From the onset of the Big He’s diagnosis, our family has been determined to bring awareness to the veteran/ALS connection. Awareness for a terminal disease is often hard because many people would rather have a tooth pulled without meds than hear about death and dying. This very topic is common place for people with ALS.

What is also important is that, Service connected ALS, was mentioned in a community of disabled veterans and their caregivers. There are pretty good odds that some in that room will be diagnosed with this disease in the future. Those veterans that have served since 911, have combat related injuries have the same high chance of being diagnosed with ALS. This is why it is so important to spread awareness. While there is no cure, one is coming. With awareness and advocacy we are helping to ensure consistent care by the VA.

While in DC I went to Capitol Hill to make my “asks” to elected officials. Today, I ask you to be a Caregiving Champion. You can donate here: https://hiddenheroes.org/caregiver-champions/donate/

As a token of appreciation you will get a caregiver tag with my family on it. I ask you hold it or put it someplace where you will see it. Think of my family and the thousands like us and know that you are part of the awareness and advocacy that the Big He and I want very much to spread.

Can you find yours truly? Who else can you find? Yes, I was that close to them.
My partner in ALS advocacy and awareness-Mary Hahn Ward. Her husband and Marine veteran has ALS. I look to Mary not only as a mentor and friend but a sister as well.

All my love,

The She

Storm is coming…

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving, Day-to-Day1 Comment

This phrase, Storm is coming, in my family is actually my Daddy’s way of getting rid of all the kids. Even when the sky is absent of any clouds, when we hear Storm is coming, we start packing up to head home.

Tonight, that phrase popped into my head but for a completely different reason. That reason, Alpha Lima Sierra. Tonight, we are in Houston because The Big He has ALS clinic tomorrow. For those not in the ALS know, Clinic is an all day event. You meet with a Neurologist, Pulmonologist, Respiratory Therapy, Physical Therapy, Occupational Therapy, Nutrition, the wheelchair vendor, and various others that do research into this disease. For many, going to clinic means hearing how much you have progressed. There is no rehabilitation for this disease. Most pray for a plateau in their progression but for many this doesn’t happen.

The storm I see heading our way is progression. Some progression is like a breeze, you feel it but there is not much to see. The storm of progression that is approaching us will change things, will leave a path of tears and fears in its wake. The Big He is getting weaker. His ability to breath on his own is becoming harder. He is losing his ability to do those things we take for granted like standing up, eating dinner, showering, and talking. Tonight, we had to quickly figure out the transfer from wheelchair to shower seat. Unfortunately I was not able to get a room with a roll in shower. We got an accessible room with a tub and bench. The difference is HUGE when it comes down to taking a shower. He was frustrated with me, I was scared that I might drop him when I helped him get up…in a split second I was running the “what if’s” in my head and what I would nedd to do if he fell. All is fine now. He is in bed, mask on and trying to get some sleep. The drive, dinner and shower exhausted him. That’s ALS. Tonight, I felt the fear and anxiety of this upcoming storm. This next change in the progression will be drastic. It will be a huge shift for the Big He, for the whole family. He will become more dependent on others.

I hate this disease. Nothing is holding back this storm. We must just watch. We are helpless when it comes to the progression. We know all we can do is try and stand as strong as possible to withstand this storm. We also know the calm will also come. We will adjust to the changes that come. We will get back to a routine…until the next storm.

A storm is coming. I can feel and see it. Our faith and love will keep us strong.

All my love,

The She