Tag: ALS

How do I say…

On By tomstroopsIn Alpha Lima Sierra2 Comments

I have tried so many times in the past six months to do a post, but every time I start to write, I delete, delete, delete. It has more to do with how best to paint the picture of living an ALS life to you. I have tried to be authentic. To articulate the daily struggle that ALS brings. As I write, I find how sad my words are and so I delete. I started this blog to share the journey but as the disease progresses and the journey gets harder so does my ability to show you behind the curtain. So I struggle with how to say things are hard, ugly and sometimes heartbreaking. Don’t get me wrong, it’s not hard all the time, but a good part of the time.

May is Month of the Military Caregiver and I am going to be better at sharing. If only for a month. So, my question is are you ready to hear the hard stuff?

All my love,

The She

Just one week

On By tomstroopsIn Alpha Lima Sierra1 Comment

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

On By tomstroopsIn Alpha Lima SierraLeave a comment

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

Month of the Military Child # MOMC

On By tomstroopsIn Alpha Lima SierraLeave a comment
See the source image
Button courtsey of the Elizabeth Dole Foundation

April is the month we recognize children of those that serve in our military and in realty those that have served. Our Little He came in to our lives years after the Big He honorably discharged from the USAF. We never imagined that we would be thrust so actively into this community again. Our time in the military were stories we shared with our boy. Pictures we shared and fun souvenirs he could take to school.

Once we learned the Big He’s ALS diagnosis was connected to his military service and our connection to this community was re-established, our son has now seen first hand what being connected to the military community really means. Just as we learned when we were so young, the military takes care of their own. They watch out for you for one reason, you are family. The Big He’s brothers and sisters he served with have reconnected with us and have shown our son the same love and friendship they have for us.

Today I want to recognize our amazing man-child. He was only 13 when he learned his Dad had been diagnosed with a terminal disease. It was the day that would start his journey as a kid caregiver. I have to say kids are amazing and we don’t give them enough credit at times. As much as we want to protect our boy from the heartache this disease causes, I know it is this journey that will shape him into a man we could only dream he will become.

Our boy has become so much more empathetic which is not something you find in a tween and teen. His responsibilities are also more than the average teen. He assists with those things around the house that his dad once did. He assists with the daily hands on care of his dad. To some extent, care that most adults will never have to do. He does it with a smile and joke most days. His sense of humor has grown and he has learned to use humor to help cope with the sometimes embarrassing or awkward moments. His emotional intelligence is sharpening [more than some adults I know]. This trait will serve him well in the future. I hate he has to experience so much pain so early in life, but the man he is becoming because of this journey makes his mom and dad’s heart smile with pride. We know he will have the skills to handle whatever this life throws at him.

Tom and Trey Drivetanks.com
Tom and Trey during physical therapy
Valentine Shenanigans

All my love,

The She

Bonus year 2019

On By tomstroopsIn Alpha Lima Sierra2 Comments

Today, we mark one year since the Big He had his trach placed. In a month we mark 4 years living an ALS life. Had the Big He not chose to trach, the Little He and I would be approaching a different anniversary. The memories of watching him struggle to breathe and how weak and helpless he looked laying in that bed will forever be etched into my memory. The fear that I felt as I watched him was incredible. Night after night wondering if I would be leaving the hospital a widow. Overwhelmed with how I would tell the Little He. I am not sure how many people truly knew how I was barely holding on. I gave a brave face to the Big He and Little He and those around me, but at night when the ICU was as quiet as it could be with all the equipment and alarms, I would pray for comfort. I would pray for strength to hold it together one more day and I would pray for my husband.

His decision to trach was made because he was not ready to die. His decision to trach was because he loved us that much. His decision to trach has not been easy. The recovery from pneumonia was very, very hard. He experienced greater paralysis as a result of the insult to his body. Not gonna lie, this has been an incredibly hard year for our whole family. I can tell you that this year has also shown the Little He and I how much we are loved by the Big He. Not only has he fought hard physically to recover from the pneumonia he has fought mentally as well. He walked (figuratively of course) a very dark path for many months. Are those days behind us? Probably not, I mean with a terminal disease, with paralysis and with the need for life support there are a lot of dark days. The difference between now and then is that the Big He can see that there are bright days too. If we can focus on those days, I think we are doing pretty good.

He spends the majority of his time in bed, but I am hopeful that as we push into Bonus Year 2020, we will see more outings and making more memories. This past year has not been all of losses for him. He has gained 30 pounds, he started standing in a standing frame, he started coming off his ventilator for short times, and recently he has started to sit on the side of the bed and use his own muscles to hold him self steady. He has even begun to move forward and backward and side to side. Not bad for a guy that was supposed to be paralyzed. We will take every win we can get.

Photo by Christian Fridell on Pexels.com

I hope you now see why this is our Bonus Year and I pray we have many more to come. If you are out and about this weekend or even staying home, raise a glass and celebrate our bonus year. Post your pictures and tag our Tom’s Troops Facebook or Twitter accounts and use the hashtag #bonusyear2019 so the Big He can see his Troops celebrating with him.

All my love,

The She