Month: July 2025

Aha or gut-punch Moment? Maybe both.

On By tomstroopsIn Alpha Lima Sierra1 Comment

Here I was, minding my own business when Grant, called to chat. I was working through some thought processes with him prior to a meeting I was having later in the day when he asked me a simple question. Which was, “in your own words, why is this important”? I thought about it and started in with a statement I have said many times but stopped and resaid it in a different way. The question was related to why is important for caregivers, in this case, military/veteran caregivers, to get help in the home which the VA allows access to but many VA’s don’t approve. The answer I have given many times includes the idea that having help allows spouses to be spouses. I have always said it that way and it was something I had to grieve before I was a widow-the loss of being Tom’s wife. The version I corrected with Grant went something like this, “When I didn’t have help, I had to be everything Tom needed me to be and could no longer be who I wanted to be”.

I know, right?! That statement hit me hard. I had to stop and repeat it. Wow, when I got off the phone with Grant, I sat down and thought about what I said and why. Something I should tell you is that while I tried hard to move through Tom’s disease and do everything I could for him, so that when it was over, I would not live with regrets, there are still a few. At times, some of Tom’s care required me to turn all the power off to the wife-brain and feelings so the caregiver brain had more juice to do what was needed to be done. When emergencies occurred in the home, I disengaged the caring, loving wife part of me so I could do hard stuff to ensure Tom was okay. I had to perform tasks that, while I am glad I could do them for him, pushed me further away from what a wife would typically do for her husband to what a nurse would do for a patient.

That change in how I emotionally tackled caregiving also changed the way I saw Tom. When we had help and I could slip back into my wife brain, I always saw Tom as this healthy man. In my eyes, he looked as he did before ALS was an everyday word for us. But, when I was the caregiver/nurse to Tom, I could see the changes ALS had made on Tom’s body. He was thinner and towards the end more frail. His eyes no longer twinkled like the once did. These two drastic versions of this man I saw could often happen within the same day or even hour. I was able to switch my emotions off and on like a light switch, and I hated that!

Tom needed me to be strong emotionally for him and that required me to disengage my wife instincts. Tom needed me to fight for him and be his advocate but that required me to step out of my comfort zone and be something I didn’t want to be. I wanted to remain his wife. To stay in this relationship of ours we had created and nurtured for 25+ years. ALS forced me to become someone else for the remaining six years we had with each other. So yes, there are regrets. I have tried to work through so much, but this one area has been hard. I loved being Tom’s wife. I was a great wife. I was made for that role in life as he was made to be my husband. Unfortunately, my role of wife had to change so I could become everything Tom needed me to be. Would I do it all over again? I would because that is what was what he needed and I loved him so much that being who he needed me to be was the most loving thing I could have done for him. Now, I need to love myself in that same way and be who I need to be to ensure I live and love this new version that I am becoming.

All my love,

Lara

Just a Feeling

On By tomstroopsIn Alpha Lima Sierra1 Comment

Typically, when I write, it is the title that pops into my head, and the words flow from that. Tonight, there was no title to start me off, just a feeling. It’s familiar to me, but something I have not felt in a long time. So, why is this feeling so strong now? I don’t recall it being like this last year, but deep down, I know the reason. As much as I post about healing, living again, and finding my happiness, just below the surface, there is still pain, sadness, and grief.

July is not a great month for me. It used to be a month that brought so much excitement. Typically, at the beginning of July, Tom and I would start thinking about how we would celebrate our anniversary at the end of the month. But that changed when Tom died.

Tom’s death and the days leading up to it are marked by such sadness. I know some will read this and will completely understand. They are the loved ones who knew death was coming. For our family, we knew that Tom was locking in. It was confirmed at the beginning of July. That was the line Tom had drawn when he was first diagnosed. He made his wishes known not only by telling me but also by ensuring that those wishes were specifically stated in his medical directives. On July 4, 2022, with me calling out dates and watching his response (one blink for yes, two for no), Tom picked the day he wanted to be removed from life support.

From July 4, 2022, until his death on July 15, 2022, we knew the end was near. Can I tell you how tough it was to wake up every morning for those 11 days and act as if it was just a typical day? Harder than you can imagine. How did Trey and I do it? I can only say it was divine intervention that got us through. We did it for Tom. We did it out of love. We knew we had two choices. Live each day already grieving him, or live each day loving him and enjoying him. Did it stop the thoughts? No. Every morning, I would think, ‘This is the last Monday I will have with my husband, or I only have seven more days to tell him how much I love him.’

This feeling, I can name it now, is grief, and the anxiety that comes with it is the physical manifestation of loss. It is afraid to go to sleep for fear of remembering the hardest parts of the ALS journey. This feeling was my bed fellow. It was with me every night in that first year. Why now? Is it the approaching anniversary of his death? Most likely. What I think might also be going on is that this feeling is here because, as I am approaching the 3rd anniversary of his passing, I am also working to let go of some of the negative feelings surrounding the ALS journey, which are things like guilt and anger. Grief is such a funny thing. We hate it, but at the same time, it becomes a safe space. I no longer want grief to be my safe space. I want to let go of some of this further.

How do I let go of the guilt and anger? I’m not sure; it’s just a feeling that the next part of the journey will require a bit more effort to process