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.

white and brown wooden tiles

Anxiety and Fear

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

Twofer

In the advocacy world, May is a twofer for veterans with ALS. Not only is May the month of the military caregiver but it is also ALS awareness month. Lucky us, right?! This month I am going to do my best to share with you the real story. Not the one I polish just enough for prime time or where I use humor to soften the blow of what living an ALS life looks like from the perspective of the wife and caregiver.

As I pull back the curtain, let me give you the highlights of the last six months to show you what has been going on:

November 2020-As if dealing with ALS and Covid wasn’t enough, the Big He developed a kidney stone which sent us to the emergency room due to the pain.

December 2020-The pesky kidney stone was still causing problems so we went back to the emergency room where an MRI showed the stone had not moved. The Big He was admitted to the ICU because that is the place you put people on ventilators. The ICU has several pods and we were placed in the one that did not have active Covid patients. The Big He had a procedure to remove the stone which went well until he developed sepsis. He got sick, like really sick. It scared me. It scared him once he came back to the living and was able to understand exactly how sick he had gotten. Two days after the scariest part of the sepsis we were sent home. Not because he re-bounded so well, but because we needed to get out due to the increasing Covid cases.

January 2021-The Big He developed pneumonia. We were on it very earlier and were able to avoid a hospital visit but it was pneumonia and he already has a weakened immune and respiratory system so it was another scary moment.

February 2021-Winter came and she was called SNOVID. Texas was hit hard. We did good regarding electricity because in early Fall 2020 I had a natural gas whole house generator installed as a “just in case”. Never in my wildest dreams (and I have a crazy imagination) did I consider losing power to winter. Our part of Texas does not have a real winter. It may get cold for a day or two but not multiple winter storms in a row. We had to get help from neighbors to ensure we had enough distilled water for the Big He’s humidifier that is part of his ventilator circuit. The paid caregiver help we use, for the most part, could not get to us except for a few days and only for a few hours. So the Little He and I were it. Emergency services were limited and no guarantee they could get to us if something did happen. I spent my days and nights scared. Scared something would happen that I would not be able to handle.

March 2021-This was the month of the broken down caregiver. During March I had to go to the ER due to fever (101 plus) and belly pain. My trip to the ER could not happen until the Big He’s care was covered. Luckily this all happened on a night that we would have skilled care. After five hours in the ER I was released. I had developed acute diverticulitis. WTH??? It took two good days for me to feel well enough to start really helping with the Big He again. The infection took me down hard! Maybe two weeks after the ER visit, I made another ER visit. This time because I had sliced my wrist while doing dishes. Four staples and helluva lot of pain, I was home. The paid caregivers had to really step up along with the Big He to allow me the chance to let my wrist heal…you know so I didn’t pull any staples out. Which did happen. Well not out but one staple was so twisted I had to remove it just a few days after it was placed.

April came and went without issue, well not huge like the previous months. I did realize though that the past several months had really traumatized me in the sense that I am not as prepared as I thought I was. That you can “what if” and prepare all you want and you are really not ready for what life throws at you.

All my love,

The She

Just one week

Since the Big He’s diagnosis we have wanted to bring awareness to not only the disease ALS but the prevalence in the military community. We have written blogs, did Facebook and Instagram posts and Tweeted, I wanted to do something a little different. Instead of writing something, I wanted to show you what one week looks like. For time sake, I did not include our whole week…just the highlights. Besides what is shown in the video below is the non-hands on care that occurs. It’s things like keeping an eye on supplies. Making sure they are ordered and received before we run out. I must find homes for the constant Amazon boxes and VA deliveries. The time and energy spent on the phone facilitating care for the Big He happens behind the scenes. In this particular week, I needed to secure a Dentist which was not an easy task. Working with the VA on this and the support we would need took a toll on me. You sometimes need to talk to multiple people before the game of “telephone” ends and everyone figures out what was originally said or requested. It actually took me three days to recover mentally and emotionally. While we don’t deal with emergency dental procedures every week, every week something is going on.

ALS is not for the weak for sure. We are warriors and we will fight this enemy every. damn. day.

ALS-Just one week

All my love,

The She

Unintended Consequence

Have you heard of this term? As I was waking up this morning, this term came to mind as it relates to being a caregiver to my veteran husband. It is term I would keep in mind, as an environmental regulatory consultant, when reviewing proposed rules. One of the things I tried to identify when I read rules was that the proposed rules did not have any unintended consequences. That is, were the rules written to solve one issue but created another one that was never intended.

This morning, it dawned on me that veteran caregivers are in a sense, unintended consequences. Stay with me…when the Big He joined the Air Force he knew there were risks. When he deployed that Christmas in 1990 to Saudi in support of Desert Shield/Desert Storm, he knew there were risks. I knew there were risks. However, do you think the Veterans Health Administration would have ever thought about the consequences of the caregivers to those veterans? I often say, I do what I do because I love my husband, which is true, but as a caregiver, I bear the brunt of the result of my husband’s service. I am so proud of that service. I am proud of him, but there have been unintended consequences for me as a caregiver. My physical, mental and emotional health has suffered. It’s not something I or many of those caregivers I speak to like to talk about. Most of the time, we just do what needs to be done. We hope the promise by our government leaders and the VA to help care for the caregiver will be fulfilled.

So why did this term come to me this morning? For over a year I have been asking for additional help. Particularly help at night a few nights a week. As the primary caregiver to my now paralyzed, vent dependent ALS veteran husband, I am exhausted. Yes, some nights we get more than 4-5 hours of sleep, but it is not that good, restful sleep. I am always listening to the sound of alarms or that sound the Big He makes as he struggles to breathe because he needs suctioning. I have been denied night time help by two different programs at our local VA. The frustration factor is at an all time high. From my perspective, it as if the clinicians making these decisions are truly clueless to the needs of the veteran and their caregiver. Keeping in mind that these clinicians have probably not done patient care in some time. At our local VA, the hiding behind problems is common and it may be due to an old mindset that government officials have. It is a rare few that don’t see a problem, just a solution that has not been discovered yet. [disclosure: I was a state government employee for a few years so yes, just as in any profession, there are those that go to work to collect a check and those that go to work to make a difference].

I am working through these issues. Step by step, person by person. While there are times that yes, I get tired and throw my hands in the air and say, “I am done”. However, the next morning I wake up and try again. You see with unintended consequences, it doesn’t mean that’s it. It means you work through the problem, identify and eliminate the cause of the unintended consequence. This means, seeing the caregiver for their true worth and doing what needs to be done to ensure they have all the resources needed so we can keep our veterans with us healthy and strong for as long as possible at home where they belong.

All my love,

The She

Paralyzed. Trached. Now what?

Most everyone knows by now that the first part of 2019 SUCKED for our family. The Big He had a cold in January which started us off to a really crappy new year. All said and done over 40 days spent in ICU.

The insult to his body after all of this was an increase in the progression of this cruel disease. Where prior to the cold he could stand and transfer on his own, he no longer can. He was able to use his left hand and arm and now he is paralyzed. He was eating and drinking and now he is fed through a tube in his stomach. The fear of how the Big He would adjust was like a thick cloud in the house. He was quick to anger and wanted to do nothing but lay in bed. It was almost 2 weeks after he got home that he had the motivation and energy to get out of bed. Since then he is now out of bed several times a day, gets in his wheelchair and we have even made it out of the house.

But now what?

Well, let me tell you. The Big He has been learning and playing with new software on his surface pro with eye-gaze technology. He is learning Photoshop and Light Room. He is taking all the pictures from our post diagnosis bucket list trips and playing with them more.

All of this to say, I am totally going to brag on my amazing husband. He has pulled himself through the muck of pneumonia, trach surgery and sepsis and is finding his happy (besides the Little He and I) which is Photography.

He has always loved photography but with work, family and the million things that need to be done he never was able to find the time. That is until the diagnosis. He got himself a new camera and we began our Bucket List adventures. Our adventures have taken us to Washington DC, Bora Bora, Tahiti, Hawaii, Colorado, New Mexico and of course all over Texas. We will be able to use these beautiful pictures as a way to remember.

You can now find some of his photos on Fine Art America.com

These pictures mean more than just a wonderful adventure. They were edited by the Big He using only his eyes. Since he is still getting comfortable using the eye-gaze the time it takes him to work on a photo is lengthy. These photos are the beginning of a new Chapter. He is working with his cousin to get his camera mounted to the wheelchair so he an operate it hands free. We will continue to be able to see the world through the Big He’s eyes which will keep our memories alive forever.

April 2019

All my love,

The She

Storm is coming…

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