Tag: ALS Caregiver

Widow Truth-9/28/2022

On By tomstroopsIn Alpha Lima SierraLeave a comment

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,

Lara

Story Time-Our Wedding Day

On By tomstroopsIn Alpha Lima Sierra, Living Life to the Fullest2 Comments

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

On By tomstroopsIn Alpha Lima SierraLeave a comment
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.

white and brown wooden tiles

Anxiety and Fear

On By tomstroopsIn Alpha Lima Sierra1 Comment
white and brown wooden tiles
Photo by Suzy Hazelwood on Pexels.com

After the Big He received his trache and went on a ventilator, severe anxiety and fear were two things that became a constant with him. It was something that I had not seen in our years of marriage. Yes, I had seen him anxious at times and when we lost the babies, there was fear but this is different. This level of anxiety and fear is all consuming and here is the hard part to admit…it has changed him. This is where trust and love play a huge role in our relationship now. The fear and anxiety are often seen as anger and rage. It has been hard to see and live with such intense emotions. I have never been on the receiving end of the Big He’s anger and now I have to constantly tell myself he is not angry or raging but it is the disease causing this. Some days I can easily see the difference and some days it all blurs and his words and actions break me. Rage is actually something that is new to me. It was only after talking with other caregivers that I began to understand that the emotion I was seeing from the Big He was anger on steroids, it was full on rage.

See, this is a side of the disease that I, like many of my caregiving brothers and sisters, only discuss between us and only with those that we see as safe. For me, when I do talk about this with my ALS and veteran caregiver friends, I do so knowing they do not judge. They understand how the person you married becomes someone else. This is actually pretty common with not only ALS caregivers but those that care for veterans. While my husband is considered a pre-911 veteran with a service connected disease, many of my post-911 caregiver friends have experienced the same. Maybe not from the place the Big He is coming from but from their veteran’s invisible wounds like TBI’s or PTSD.

This is the part of caregiving most people don’t even think about. Seriously, when you hear of caregiving do you think of the emotional aspect? You probably think of the making meals or helping with personal care. There are just so many facets to this life which is why I am opening myself up to help bring awareness to not just the caregiving to someone with ALS but those that help our nations wounded and ill.

I can tell you that when the Big He is angry with me, which happens more and more for all sorts of reasons, I find my mood changes. I don’t like my husband to be mad at me. I sometimes walk on egg shells and sometimes I just stay away and get lost in binge watching Netflix. Luckily his angry moods don’t last too long and before I know it he is back to the man I have grown up with, the man I love. Anxiety and fear fade away because of trust and love. So that is what I hold on too as we navigate this later stage of the disease, trust and love.

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