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.

Story Time-Our Wedding Day

The Big He and I get to celebrate our anniversary for two days. I know, you are asking yourself, how is that possible. Well, 31 years ago, we eloped on the island of Guam, which is a day ahead of the US. Guam was the Big He’s first Duty Station. We had planned for me to visit for the summer of 1990 and would marry later in the year. Well, as with any good love story between two very young kids, fate had us marry earlier than we thought.

A few days after my last college final in May 1990, I was on a plane to visit the Big He on the island of Guam. I had a return ticket for the first part of August. I would have two whole months, sixty consecutive days to be with him. By this point in our relationship we may have had a total of 45 days we were physically together and keep in mind they were not consecutive.  Let me just say, I had the best time with him on the island. I was, for the first time in my life, off on my own-okay I was with the Big He but it still counts. I was on a tropical island with the most gorgeous man AND he was in a uniform. Who knew I had a thing for smart-ass and uniforms. In mid-July, the Big He was preparing to go off island for an exercise. He would be gone for 30 days. We had only two choices for what I could do. I could go home early or stay. So, we got married July 30th, 1990 which was about one year after we went on our first date. I was twenty years old and he was twenty-one. I had no job and only 2 years of college under my belt. He was just an Airman First Class and on the day we married, he had negative $80 in the bank. He had bounced a check for a microwave of all things. Of course a bounced check could not stop love!

You would think finding out you were negative $80.00 would be the worst thing that could happen on your wedding day…it wasn’t. You ready? Here is the story…

We had arranged for two friends of the Big He to come with us to be witnesses and also because one of them had a vehicle to get us to the Justice of the Peace (JP). There was actually five people in the vehicle that went that day. At the JP’s office, we did have to wait a litte bit. In those minutes before our time to get hitched, my stomach was a ball of nerves. The Big He and I could barely look at each other. I knew I wanted to get married, but man was I scared. Standing in front of the JP and looking into the beautiful green eye’s of my future husband, the best I could mumble when asked if “I take him to be my…” was not “I do” but “Yea”. WTH??? Such a romantic and traditional way to express my desire to cheris this man for richer or poorer or in sickness and in health. The look on his face…he has yet to let me live that down.

After the ceremony, which there are zero pictures, we headed to McDonalds because everyone was hungry. Remember I said the Big He had bounced a check…yep no money to eat. After McDonalds we headed back to Base. On our way back, we were pulled over because the driver was speeding. After getting a ticket, we took off once again towards Base. About a mile down the road, we had blowout. Not a big deal until we realized there wasn’t a spare. The blowout occured on a back road to Base and in the middle of no-where. There was however a small house on the edge of the boonies or jungle line. I was voluntold to go knock on the door and ask to call the Law Enforcement Desk. Oh, hey, did I mention that all the people in the truck were cops but I was the one that was supposed to knock on a stranger’s door for help. One of our brave USAF LE’s did come with me and the LE Desk would be sending a patrol car to come get us and sending a tow truck as well.

As we waited in typical tropical island weather, we had on again, off again rain events. Y’all know I have naturally curly hair right? It does not do well in hot, rainy, humid weather. The tow truck was the first to arrive. My new husband and our friend Daryl, my man-of-honor, jumped in the truck and off they went to Base. Yes, if you are asking yourself, did she say new husband left with Daryl, that would be correct. I was left alone on the side of the road with two people, none of which were not my new husband! The two LE’s decided it was probably a good idea to start walking back to Base in hopes the patrol car would get to us soon. Yep, that didn’t work out very good. The patrol went out the wrong gate which took him around the island before he caught up with us…only a few miles from Base at this point.

Once back on Base, we were dropped off at the dorms, where my new husband was waiting for me, freshly showered and I swear he took a nap cause he look rested. Me on the other hand, had wild crazy curly hair, sweaty and my pretty white heals were worn flat from walking on the road which had a coral base to it. Once I freshened up, we went to have a wedding dinner at the NCO club…cause we had no money and he knew if he took me to the Mac T I would kill him. The only thing left that late in the evening was steak, potatoe and salad. They also had a few slices of cheesecake for dessert so that was our meal. One we have eaten every year since. Steak, potatoe, salad and cheesecake for dessert.

The day wasn’t picture perfect but that is not really what a marriage is about is it? It’s about the people. We actually laughed most of the day and night about what had transpired. The Big he and I have always found reason’s to laugh. We just love being with each other and truly enjoy each other’s company.

Since it is already July 30th in Guam, I am taking the opportunity to wish my beloved a Happy Anniversary. Love you more!

All my love,

The She

Struggle Bus

Riding the Struggle Bus
Photo by João Jesus on Pexels.com

This morning, it was the whining of one of the dogs that woke me. It was time to wake up and start the day, at least for them. Before I could let the puppers out, the Big He needed to be suctioned. Once the Big He was taken care of, the dogs were let out and a big cup of coffee in one of my favorite mugs, my Red Hidden Heroes, was made. Walking back to the bedroom my eyes are immediately fixed on the Big He to ensure he wasn’t in any distress, which thankfully he wasn’t. He was just reading the morning news and checking on his investments. This is how our first 15 minutes of our morning starts, hopefully. As I wait for caregiver B to arrive, my mind starts spinning with the things that need to happen today which started with a call to our VA nurse case manager to follow up on a concern I have regarding obtaining physical therapy. Once B arrives, we remove pillows that support the Big He, switch ventilators, remove the feeding tube, move the communication device, grab the motorized ceiling Hoyer and move him to the shower chair so he can use the bathroom. Once done, we reverse what we just did to get him back to bed and in a comfortable position.

At this point, B starts the rest of the morning routine like breathing treatments, crushing meds, getting food and water loaded into the feeding pump, and trache care. I will typically go check on the Little He, grab another cup of coffee and stand in the middle of the kitchen and try to figure out what is next. This is where I struggle. There is NEVER a lack of things to do but still most days I cannot do what needs to be done. The Big He is physically paralyzed and I am mentally paralyzed. Fear. Anxiety. Depression. They all play a part. It’s worse if I have had little sleep or if the Big He is having a hard time. My mental and emotional health is on a never-ending roller coaster ride. I try and hold it together for the Big He and the Little He but there are days. Days that I am only functional enough to do caregiving duties, but I am of little real use to them or myself. There are days that I choose to just sit on the couch over taking a shower. There are days I can’t find the energy to call or text someone back. Some days I look around the house and see the mess but I honestly don’t care. Then my mind races to the fact I should care or the thought of how I should have the house clean just in case…just in case we need EMS to come in or what if he dies and a host of people will be flooding the house. Of course, those thoughts are quickly replaced with “Fuck it”. So I go back to staring at the blank TV, watching the dogs just be dogs, or mindlessly watching TikTok until I am called to help the Big He out. My energy is reserved for the Big He. That is what being a caregiver to someone that needs total care is your life melts from one crisis to another, one breathing treatment to another, one load of laundry to another until you realize that there are days that you live your life on the struggle bus and you come to accept it because that is what being a caregiver to someone that needs total care is about.