Author: tomstroops

Expectations: High, Low or Realistic

On By tomstroopsIn Alpha Lima Sierra1 Comment

Which is better, having high expectations or low expectations? What about realistic expectations? ALS took so much from our family, but having the benefit of being reflective on the ALS journey, I can see some things it gave. I have always said that ALS gave us the gift of time. I know, how can I even say that with a disease that can move so rapidly. I can say it in the sense that when we found out that Tom’s death would be determined by the diagnosis, we had time to say all the things we needed to say. We had the conversations that without a terminal diagnosis, I am not sure we would have had, to the level we had them.

Another gift ALS gave was self-awareness. I can identify my limits faster these days that the ALS journey forced upon me and required me to figure out. I developed tools to deal with the disappointment and anger caused by a terminal disease. Tools like setting realistic expectations, learning to let go of disappointment faster, and just giving myself grace in difficult situations to name a few. Am I an expert at using these tools? Please, have you not figured me out yet, I am a walking/talking shit show most of the time, but I like to think, I am also a work in progress. I am much better than I was when Tom was diagnosed in 2016. I learned fairly early on that I needed to lower my expectations in some situations. Lowering them allowed me not to get my hopes up. Lowering them helped me from being disappointed all the time. I mean, learning that the person you loved and thought you would spend the rest of your life with was going to die from a horrible disease is one hell of a lesson in adjusting those expectations. Did I lower my expectations in all things, no, but I did begin to set more realistic ones. As I am writing this, I am realizing that we can’t talk about expectations without throwing in the idea of control. I am the first to say, I have some control issues, but again, my ALS journey with Tom forced me to adjust those control issues for self preservation. Living constantly upset and with extremely high anxiety is not healthy. Jeez, I think I have destroyed the regulation of my flight/flight response from the years if anxiety due to disappointment and anger.

So where is this blog about setting expectations coming from??? Well, let me tell you a story. In a few days, my niece will be married. As her Aunt, I am over the moon excited for her as she starts a new journey as a wife, and hopefully in the future a mother. I just love babies!!!! Where was I, oh yes, so she is actually having a destination wedding in Cancun this long weekend. I have been preparing and paying towards this weekend since May. Trey and I got up early yesterday morning, bags packed, dog’s had been dropped off at the pet resort the day before and we headed to the airport to start our 5 day vacation and destination wedding in Mexico. We even made it on the plane, but when the plane was backing away from the gate there was a mechanical problem. One that would take us back to the gate where everyone had to get off the plane. We knew this delay would cause us to miss our connecting flight to Mexico so we began to figure out a solution. Which in the end there was not a viable one that would get both of us there until Sunday with our original return flight home being on Tuesday. This was my very first time having this issue so was I fast at thinking through the problem, I wasn’t but the gate person helped us work through possible solutions. Was I great at dealing with the emotions of anger, fear and disappointment, no again! Remember when I said early my ability to regulate my fight/flight response, well yesterday was an example of this. Dealing with high emotional issues are very difficult. Like I said, my regulator on those things no longer works so yes, lots of anxiety going on at the airport.

I was so incredibly disappointed about this turn of events, as was my family. This was one of those opportunities I would finally be able to participate in. Something I was not able to do while we battled ALS. ALS and my caregiving to Tom along with a lack of outside help, meant we missed out on many family events/milestones. Now that I was physically able to participate and this situation being out of my control…was just too much. But, instead of beating myself up for days on end and letting my disappointment and the disappointment of my family feed my guilt for not being able to make it to such a special weekend, I am giving myself grace. I adjusted my expectations to being realistic as opposed to being too high. The plane’s mechanical issues were beyond my control. The limited, last minute available seats on flights to Mexico, were out of my control. I could control how I reacted to the disappointment and I could control how I moved forward.

This morning I woke, took a walk around my neighborhood and enjoyed the cooler weather. I reflected on how the old me would beat myself up for days, feeling guilty for things that were out of my control because I had set my expectations too high. As I finished my walk, I focused on what this weekend is, which is a beautiful bride, my niece, who will say “I do” on a beach in Mexico with family and friends looking on. I can be supportive and love her from my home just as I could in Mexico. This is me setting realistic expectations and using the tools in my toolbox to see my way out of the disappointment in a more healthier way. This is me seeing the bigger picture of what our trip to Mexico meant.

Love you more JuJu! I know Uncle Tom is absolutely watching from above and keeping an eye on eye on you as he is wishing you the best and probably will be keeping a close eye on your soon-to-be husband, because no one messes with his Julie!

Happiness or Contentment

On By tomstroopsIn Alpha Lima Sierra2 Comments
After trauma and loss, can you find your happy again?

I just got back from therapy. I started going back to therapy shortly after Tom died. At first it was weekly, then every two weeks, and now it is monthly. I don’t want to be stuck in the grief or have the trauma of caregiving complicate things. I know me, sitting in grief is a comfortable place. I did it after Tom and I lost our twin daughters and again after our son. Tom knew me too. During the ALS years, Tom and I would talk about what life would be like after he passed. He was adamant that his wish was to have me learn to live and be happy again and not get stuck in grief. Today the conversation of working through the trauma of caregiving and losing my husband with the therapist expanded on a conversation I had with my friend Mary during one of our podcasts. We spoke about being broken and how do you come back after such an incredible loss. Can you come back and be happy or do you understand that happy may not happen and you become content with your new life? My discussions with Mary for our podcast has been very helpful as I move through this side of ALS. In the moment, I don’t know if I will ever be truly happy again. The kind of happy you are when you are in your love bubble and the world’s problems seem so far away, because it takes a lot to penetrate that bubble. I was the kind of happy that while I knew and had experienced bad things, my love bubble was intact. I had my amazing husband and my amazing son. Until I didn’t. Tom’s ALS was the one thing that popped that bubble and my perception of things.

When we lost the twins, it happened to us, and we had each other to lean on. When ALS entered, it happened to us and we had each other to lean on. When Tom died, it happened to us, and I was alone. My happy was gone. My soul, like our love bubble had been pierced. How do you come back from that? How do you find that kind of happy again? Do you become content with life or do you learn to be happy again? To be honest, being content doesn’t seem like a good way to honor my husband. Especially when we had those conversations about learning to live again. Am I letting him down or myself? At 13 months post loss, the incredible emptiness of his absence is still so intense. I am talking about the happiness you have in life in general. Happiness that you find in being alone or in a crowd. The idea of being able to honestly say, I am a happy person. I used to be that kind of person, but these days that is not exactly how I would describe myself. I wonder if I had my happy and I should be content with just being content.

As you can see, there is a lot to work through. I didn’t just lose my wonderful husband and best friend. I am the product of what intense caregiving leaves behind. It’s called trauma. As a society, we don’t talk about this. The narrative is that family caregivers give of themselves, they are selfless for caring for their loved one. Do we think about the unintended consequence of what that caregiving does to the caregiver? Do we even speak of it? I think the answer is yes, we talk about it. If we tell our story, the good, bad and ugly maybe we can normalize these big feelings. We will all be touched by death and some of those deaths will be so monumental they will change you to your core. When that happens, know it is okay to tell your story. It will be how we work through the trauma and grief. Maybe we will find that working through these things will show us that while contentment is perfectly acceptable, maybe we will find we want to find a new happiness. I look forward to that day.

Working on finding my happy again,

Lara

NOTE: While it is only the person that is diagnosed with ALS, and they alone must battle the actual disease, ALS is still a family disease. There are two sides to that terminal illness coin. The person with the disease, and the family that steps in, steps up and experiences every second of the disease with them, and it is the family that is left to pick up the pieces after the loved one has passed.

“I would do it all over again”

On By tomstroopsIn Alpha Lima Sierra2 Comments

Whenever strangers would see Tom in his USAF Veteran baseball cap, they would thank him for his service. He would always say, “Thank you, I would do it all over again,”. Even after the diagnosis, after knowing that his ALS was service-connected, he still said the same thing. His terminal disease didn’t change how he felt about serving his country. When he was completely paralyzed, using a hole in his throat and with the help of mechanical ventilation to breathe, he still said those words…I would do it all over again.

It has been 13 months since Tom died and those words play over and over in my head. I have been struggling with his loss, struggling to find my footing in this new world of mine, and struggling to understand the difference between what is my grieving and what is the toll that caregiving took on me. As I work through these things, Tom’s words are what I hear and wonder if I had to do it all over again would I.

Knowing what I know, would I be there for him in the same way? Knowing that there would be endless days and nights without sleep, would I do it all over again? Knowing that I would have to provide such intimate care that both of us actually hated that it was even required, would I do it all over again? Knowing I would have to standby helpless and watch him struggle through several bouts of pneumonia, kidney stones and even septic shock, would I do it over again? Knowing the toll it would take on me, would I do it all over again.

Caregiving for terminal patients, like the kind you do for someone you love, has consequences. You can’t get around it. When you put someone else’s needs above your own, there will be a price to pay. I would tell myself, he has a limited time, I can sleep when he is gone or he needs me now, I will deal with any medical issues later. I would think to myself late in the night as I watched him sleep, I can give all of myself to him now because he is in the fight of his life to just be with us a few more weeks, months, years.

When I was in the middle of caregiving, I would hear people tell me I needed respite or I was experiencing caregiver burnout, but on this side of the journey is it still respite I need or is it burnout I am feeling? I think there is a misconception of this side of the caregiver journey. That once you lose your person, you will grieve them and get the much needed sleep and just move on. I think it is easier said than done. I am dealing with the aftermath, the trauma of my caregiving to Tom. I am grieving him but it is complicated with the memories of watching him slowly die. It is complicated by the things I needed to do to him and for him to help him fight this disease.

So would I do it all over again??? Yes, without hesitation. Knowing what I know, I would push everyone out of the way to be his caregiver. Loving someone in the good times is easy. Loving someone when it gets brutally hard….well, that is true love, a love you feel within your soul. That is the kind of love Tom and I had. That is the kind of love that will see me through as I heal from his loss and make sense of the toll that caregiving took on me. It’s definitely not easy, but the one thing I have learned the past 7 years is I can do hard things and I would do it all over again for him.

Lara

One Year

On By tomstroopsIn Alpha Lima Sierra1 Comment

Tom, how is it even possible that our last moments together were one year ago? I remember talking to you after Big Benton died and telling you that you could not die before me because living without you would be the death of me. You told me you couldn’t promise me that, and I knew you would never because promises meant something to you. The words, “I miss you,” just don’t seem adequate, not powerful enough, the same as the words, “I love you.”

After you were diagnosed and several times after, you told me you didn’t want me to spend the rest of my life grieving you. You wanted me to live. To find happiness, to find adventure and even love. I told you, “no promises.” I couldn’t promise those things when the idea of losing and living without you seemed like it would kill me.

A year ago, I promised you that Trey and I would be okay. We would make you proud. We would live life and have adventures. I did that, but not 100% sure I could. As the minutes, hours, and days have turned into months and now one year, I have worked hard to keep those promises. It has been hard. I still have days I can not get out of bed or a panic attack will drop me to my knees, but eventually I get up, and I move on and work on keeping those promises I made to you.

We have had adventures this past year, and Trey and I are making it, probably more surviving than anything, but hopefully, this coming year, we will find our rhythm and begin to thrive.

Sweetheart, I love you and miss you terribly. Today, as we remember you, we also honor the promise of adventures. Trey and I are on one now, not wanting to be home for this weekend. I know you are loving this one as it feeds Trey’s love of military history and piggybacks off one you and Trey once did.

You gave me so many things during our 33 years together, like what it feels like to be fully and wholly loved. You gave me a life of joy and laughter. In the last years of your life, you showed me what it looks like to do hard things. Without realizing it, you gave me the strength to go on living. I now repeat the words, I can do hard things, when the grief becomes too much. 

I love you and miss you. I am keeping those promises because I can do hard things.

Love you, Me.

Two Rooms

On By tomstroopsIn Alpha Lima Sierra1 Comment

I have two rooms in my home that have been the “dump it and forget about it” rooms since Tom died. If I come across something like old medical documents, pictures or even just cards between the two of us, it goes in one of the two room. Don’t get me wrong there is other stuff that I drop in there that I have no clue what to do with. Those things that I would always ask Tom, if we really need the object. You know what I am talking about, old electronic components, owner’s manuals, old computers that no longer work. There were some things he couldn’t part with so we kept them. There are things I can’t part with like pictures Trey colored when he was in elementary or birthday cards that Tom wrote loving things in. I think we all have these rooms or at least a corner of a room where we put those items we just are not sure what to do with. I am tip-toeing around the idea of actually calling myself a hoarder, but let’s be honest, do I really need to keep owner’s manuals when I can pull them up on-line?

This afternoon, I started pulling all the crap out of my front room. It use to be my office when I had my own environmental consulting company. It was a great office too, but that part of my life is over. Then during the ALS years, I put in some exercise equipment. I always seemed to over-estimate my time and abilities. As I look through all the paperwork, trashing old work papers and yes the owner’s manuals, I am finding little treasures. The cards from Tom that I put in there because I just couldn’t handle looking at them, today are sweet finds. While they still make my heart hurt, seeing his handwriting, knowing he touched THAT card does bring me, but for a moment, back to him. Just as I am drawn back to him with sweet memories, not so sweet ones come at me too. The medical binder I kept in the early day’s with the Doctor’s notes that identified his diagnosis was ALS. The first handicap placard he received because he was having problems with foot-drop. I found an old planner with all the doctor’s appointments and little notes I wrote to myself, like a daily journal. Such raw emotions in the beginning. The prayers I would write, praying he had anything but ALS.

There are so many memories and emotions living in these two rooms. I am actually surprised I found the energy to even attempt to tackle my front room. If it tells you anything, the room I should have started with is my guest room, but the memories and emotions living in that room, well, that is just too much for me right now. Not sure there is a meditation I can use to prepare to tackle that beast of a room. What do I hope to gain from cleaning up the front room, besides a clean front room? I think I hope to figure out how to mesh the old memories and emotions with new ones. I am hoping to claim that room back, much like I am trying to claim my life back. This has been such a hard journey both the ALS life and now life without Tom. I know Tom would want me to move on, to figure out who I am and forge ahead, but I am just having a hard time with letting go. Can you say lot’s and lot’s of feelings of guilt come to me when I think of moving forward. I have even had those close to me tell me I should not have those feelings, but saying it and feeling it are two very different things.

So, I take baby steps. Baby steps in moving forward. Baby steps in giving myself permission to live a new and different version of a beautiful life. Today I am taking that baby step by tackling one of the two rooms that hold so many memories. I am cleaning up, making it my own and trying really hard not to feel guilty about it.