Widow Truth-10/8/2022

The other day I mentioned to a friend that I felt like I was chasing happiness, but it keeps slipping through my fingers. Grieving is hard and I often wonder when exactly will I have true happiness in my life again, or will I always be chasing it. As I started to really ponder my statement, I think it may not be just happiness I am looking for but peace. Since Tom’s diagnosis, there has been a constant level of anxiety within me. As his disease progressed, the level of anxiety increased. His death has raised my anxiety level even higher. Always feeling like there was a heavy weight sitting on my chest.

This week brought another first. It was Tom’s first Heavenly birthday. That was a tough day. We did what felt right to us to remember him, but there were tears shed in the quiet before bed as I talked to him. This week also brought a huge change for our home. On Tuesday, I had Tom’s hospital bed moved to storage and our king size bed brought back in the home. When the hospital bed was first ordered for Tom, I remember saying to him that when the king bed comes back, it won’t be because he got better, it would be because he had passed. He shook his head, acknowledging the different paths with ALS we would have. I have been dragging my feet about storing the bed. It was hard to say goodbye. That bed had become a part of him for 3 years. It had become a part of our bedroom. Again, in the quiet before bed as I talked to him, I cried. I cried for him and I cried for me. When our bed came back in to the room, it was hard. As I made the bed, I talked to Tom. I ended up staying up later than normal, because I was trying to delay sleep. But in the end, exhaustion won and I slept. Really slept. I woke up more refreshed then I can remember. I slept on his side of the bed because it felt right. It felt comforting.

As I write this, I have slept in the bed 4 nights. Each night, my sleep is getting better. Today as I have puttered around the house, I realized the weight on my chest seems lighter. While I still find myself crying in the quiet before sleep and often when I wake as I realize that Tom is really gone, I feel the anxiety starting to become less. Am I feeling some peace with the changes that have occured? I am now exploring how maybe it isn’t happiness I am chasing but peace. Maybe happiness will come once I am at peace with this side of ALS. I am a work in progress. I will however, sit and enjoy the peace I feel in this moment and the fact that the weight of anxiety is not pressing down on my heart.

All my love,


Widow Truth-9/28/2022

How is it possible to see beauty when grieving? The days should be grey and stormy, and they should reflect they way you feel…and yes, that is how I feel much of the time. Tom’s loss has left me lost and some days I can not see beyond my sadness, but there are moments when I see that just for a short time, the storm is passing and the sun peaks out.

If you would have asked me how I was yesterday, I would have easily said, not great. Monday and Tuesday were tough. Dealing with the start of probating Tom’s estate has had me crying. Thinking how cruel it is that part of this administrative process is removing Tom from accounts. Erasing him from life. In these moments, I am left wishing I could touch and kiss Tom just one more time. Ask him for much need advice and often thinking to myself, “how is this my life”?

Then there are moments when If you were to ask me how I am doing, like today, I would say, not bad. I woke up with a gift waiting for me. One where the beauty of grief shows itself if you are open to it. It was this gift that elevated my mood and allowed me to do some advocacy to help others.

So what was the gift? It was pictures and a draft version of a video. I hired a videographer to capture Tom’s Celebration of Life. I knew that I would not have the capacity to remember the day, and honestly, I wanted to remember. So this morning, through tears I looked at every picture and watched the video. As I watched, I was struck with how beautiful it all was. The people that showed up to show their love respect to our family was beautiful. The tribute to Tom regarding his state and military service, beautiful. The love Tom and I had for each other and for our son was front and center in those pictures and that video, and it was just beautiful to see through someone else’s eyes.

The timing of being sent those pictures and that video, was a divine gift. I was reminded that in the middle of my suffering, the beauty of love was there and death cannot erase that love…but the banks and the government…that’s another story!

In true Tom fashion, he would have said he was not worthy of such an outpouring of love, that he was just a man living the hand fate had dealt, and at the same time he would have had a smile on his face and that amazing twinkle in those beautiful green eyes amazed at that outpouring of love.

I will share the video once it is finalized.

All my love,


What Grief Looks Like at 2 Months

For two months, people have been asking me, “How are you?” or “Are you okay?”. For two months, my response to questions like those, were “I’m okay…I have good moments and bad” or “It’s weird, I think I’m Okay, maybe I am just in the denial part of the process…who knows”. Well, if yesterday was any indication, I think the denial/shock part of the grief process is temporarily behind me. I say temporarily because grief feels like the game, Chutes and Ladders. Yesterday, I couldn’t get out of bed. The grief was overwhelming. I cried so much yesterday, I guess I was making up for the days I haven’t cried. I talked to Tom and told him how much I missed him. How hard this life is without him. My heart betrays my mind sometimes. I know I will be okay. I know I will always grieve Tom, and with time, it will get a little easier. He will always been part of me…but my heart is shattered and finds the thought of this live without Tom hard to process.

I am sleeping in the bedroom that Tom was in, it’s our Master. The hospital bed where he lived and died is still in the room. The big arm that held his communication device is still on the wall. The ceiling lift track system is still on the ceiling. The bathroom is still suited for someone that is high acuity. DME companies that provided equipment like Tom’s ventilator and the oxygen tanks/concentrator have picked their stuff up. DME that the VA purchased us has been boxed up and moved to a storage unit. Despite packing some things up, the bedroom still resembles a hospital room. Those supplies that have been packed-up but just haven’t made it to the storage unit yet take up a good part of the dining room. There is still an accessible van in our garage that I need to sale and get a non-accessible vehicle. Our home is still such a reminder of the ALS journey.

I have a mountain of paperwork that I try and go through from the remaining medical bills that Tom had to closing out accounts and dealing with the legal stuff. Honestly, I can only do about 30 mins to an hour then I am done! The mental exhaustion makes me physically exhausted. I am finding I overestimate my abilities. Thinking I am good, and “I got this” when 90% of the time, I don’t.

Grieving at the two month mark, has me getting out of the house a bit more. Not much, but a bit. When I am out and about, I still think like when Tom was here. I lived life in two hour time blocks if I stepped away from him. If I ran an errand, I had two hours to do it, because Tom was a two person assist, so when he needed to use the bathroom, it took two people. I still have that mindset. At the two hour mark, the anxiety kicks in. I have to talk to myself, to remind myself, Tom is not here. I can be out of the house for longer stretches. I also still stop at certain times of the day that marked his routine.

Two months in to the grieving, I am now starting to experience flashback/memories of difficult moments during the journey. Those traumatic moments. I remember them with such clarity. I recognise what this is and I am looking in to talking with someone. The one thing I know about myself is how easy it is to let the grief take me down into a deep depression. I don’t want that. I lost 10 years to complicated grieve when we lost our twins daughters and a son. I want to grieve in a healthy way, I want to grow from my grief just as I feel I grew from being an ALS caregiver.

The truth is, Month Two of grieving SUCKS! It is hard, and it is ugly. Unfortunately there isn’t an easy way to do this in a healthy manner but to go through it, letting myself feel the feels, and to talk about it honestly.

All my love,


Another small step in widowhood

This weekend Trey, Mina (Tom’s caregiver who he loved like a daughter) and I took a trip. A small one, but it was enough of a trip to get us out of the house. We stayed on the Riverwalk in San Antonio, Texas. Tom and I actually lived in San Antonio for 4 years while Tom was stationed at Lackland AFB. So the Riverwalk holds many memories for me. I traveled to San Antonio and Tom and I walked the Riverwalk on his weekend pass from Basic Training. We would go Downtown and walk the Riverwalk when friends and family would visit when we lived there, and as little mini vacations in the years since he discharged from the Air Force. So it is probably no surprise that I had some anxiety before the trip. Would the memories Tom and I shared consume me. Would I drown in the sadness of walking the area and not having his strong, loving hand hold mine? Would I miss sharing this experience with him?

I can say, I survived the weekend and ended up having a great time despite having the grief and sadness slide in unexpectedly throughout the day. One of the things that was hard, was getting up before Trey and Mina, and going down to have coffee. In the past, this is something Tom and I would do. We would let Trey sleep and go have some one on one time, drinking coffee and just talking about the day ahead. This weekend, I sat alone. It was tough, but I did it. I enjoyed my coffee and actually let myself remember. Remember the great times Tom and I had on the Riverwalk, but I also let myself remember the wonderful day I had with Trey and Mina the day before.

Taking this trip was another first in the line of firsts after you lose someone. You wanna know something, while Tom was not with us physically, he was there in our hearts and all of our memories.

The Administrative Part of Death

This simple act, donation of DME, caused a rollercoaster of emotions both in the days leading up and the hours after this wheelchair left our house today. As you have guessed, this wheelchair was Tom’s. In reality, this was not just DME, this was an extension of Tom. I have boxed up medical supplies, and given medical supplies away the last few weeks, but this was different. This was harder to do, but this is part of picking up the pieces after someone you loved dies. There are actually so many things that must be done that I have just been calling them the “administrative part” of death after ALS. It could be any disease, but of course my lane is the ALS one.

Since Tom’s passing, I have been working through the administrative duties that must be done. All the notifications of his death. It is emotionally draining to repeat, “I need to report the death of my husband” over and over. The paperwork is overwhelming. Once Tom’s death certificates were received, my bestie had to come and help me through some of the overwhelming paperwork. My brain could not process and I shut down. In addition, there is the struggle to pack up and either donate or store medical equipment and supplies. At Tom’s level of disability, there was and still is a lot of things that need to be packed up.

I know that this is all in my time, but I also know that there is a balance that must be found. If I put off storing or donating, then I worry that being surrounded by all the stuff will cause me to slip deeper into grief and find it hard to pull myself out. If I donate too soon, it is the same worry. I thought seeing the wheelchair leave for a new home would not be so hard, but it was. I am finding I am constantly overestimating my abilities. I recognize that my life is still trying to find its new normal and I must go back to working on being gentle with myself. To give myself permission to be anxious, sad, and even happy. One minute at a time some days and one day at a time on other days…that is how I am taking things.