The Best Laid Plans

This time last year, I was in Washington D.C. taking part in a week long event hosted by the Elizabeth Dole Foundation. This week long event included a Gala so I was able to dress up, put a little makeup on and go mingle with other caregivers and those that support us. It was so much fun. I so enjoy meeting new people and chatting them up.

As with everything in 2020, COVID has required everyone to do events virtually. I am actually good with this. Long before COVID, ALS put a stop to getting out. The Big He is not all that mobile these days. It’s uncomfortable for him to be in his wheelchair for any length of time so we spend our days in the master bedroom. The formal gala that I attended last year is virtual this year. So for us, watching in the comfort of our bedroom is just fine. I did however have the best plans for us to dress up to include our paid caregiver M as well as the puppers. Lou even has a new bow tie. You notice I said ‘plans to dress up’ right?

This morning Lou woke me up and the Big He was staring at me. It turns out his communication device stopped and he had been unable to get my attention since 3 a.m.(with his trache he no longer makes any noises and since he is paralyzed, he couldn’t do anything but lay there) to help him. We often wake up multiple times a night because he needs to be suctioned. He did have multiple times he needed suctioning that some how he was able to resolve but also had to deal with panic attacks because his inability to get me. I spent the morning beating my self up. Why? The guilt attached with not being able to meet his needs has been overwhelming. I can handle the Big He’s anger and frustration that is generously given but what I can’t handle is knowing that he experienced fear and helplessness.

The issue has been resolved. His computer is working without any issues and I have set up a switch/alarm system next to his head that he can use since he does have some movement in his head and neck. As the evening has approached I find I just don’t have it in me to get dressed up. My heart is sad. I know I am only human as a few caregivers in my caregiver tribe reminded me. This morning, I was the Big He’s wife. The woman who loves him dearly and would do anything to protect him, to make him comfortable and safe. This morning, as his wife I did not do that. He however has been amazing and loving. He has reminded me all day how much he loves me and that he understands I am only human.

So since my plan to have a fancy dress up night will not happen, here are some photos of the event from last year.

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

You is kind, You is smart, You is important and You is loved

Tonight is the Little He’s Birthday Eve. Tomorrow at 12:51 pm, our boy will officially celebrate his 18th Birthday. First, I still am not sure exactly how he grew up so fast. I mean, I clearly remember bringing him home from the hospital not that long ago. Of course, he came home 104 days after his birth. How crazy is that? His original due date was December 12th but he just couldn’t wait to meet us and came August 30.

This time 18 years ago I had already spent a week in the hospital on bedrest. I have a problem carrying babies. I have what is called an incompetent cervix. How much you wanna bet, some dude came up with that name? This time 18 years ago, I knew something was wrong. I knew there was a problem with the pregnancy but the doctors and nurses insisted nothing was wrong. There was nothing for me to be worried about. But still…

That little voice that spoke to my heart was right. Something was wrong. In the early morning of August 30 my water broke. Within an hour or so, the Big He and I were transported to a larger hospital with a higher level NICU. Roughly six hours after my water broke, our tiny 24 week preemie was born by emergency C-section. He made a little kitten sound, ensuring us he had been born alive. That little guy had a tough few months. He had to have three surgeries during his NICU stay. He had ups and downs but surprised everyone with how healthy he seemed despite his early arrival. That amazing strong boy has been surprising us every day since. He never developed any of the disabilities that could have developed due to his early arrival. He has grown into an amazing young man. He truly has a kind soul. He has amazing people skills and is so dang funny.

He has surprised his Dad and I on how he has adapted to this ALS life. It is not easy and makes being a teenager more difficult due to the responsibilities that have been thrust upon his young shoulders. He has taken over the household chores his Dad had been doing. He always seems to know when his Dad or I need a little extra love and the best part, he doesn’t mind showing it to us. He is not one to follow the crowd but paves his own path and doesn’t really mind what other’s have to say about it. What a great trait to carry him through his adult years.

Tomorrow, despite ALS and a global pandemic, we will celebrate our amazing boy. I was thinking this evening that while as parents, we try and raise amazing kids to be happy, healthy productive members of society we as parents, actually learn from them as much as they from us. I have learned to trust that voice that talks to my heart. I have learned that in the moments when I question if the Big He and I have done everything we could for our boy in raising him right, all we have to do is look at him. The answer is without a doubt, yes.

Despite being born 16 weeks too soon, enduring 3 surgeries in 3 months, and learning at 14 yrs old that his Dad had ALS, he has shown us how amazing, kind and loving he is.

Happiest of Birthdays sweet boy.

All my love,

The She

The Pearl Anniversary-30 Years of Love

Today the Big He and I celebrate 30 years of love. My anniversary go-to gifts to the Big He are typically those that he can use to either fish or grill. ALS has taken those things away so the challenge now is what to give that is meaningful to him. My gift this year to my better half is the gift of memories. To remind us of our amazing life together.

A love story, 30 years in the making

Haircut for Hidden Heroes

Pandemic hair and this wife does care. The Big He needs a haircut. He said he would not cut it except for a good cause. He wants to support Hidden Heroes like me, but he needs your help. He will cut his hair if we meet our $5000 goal. Can you help us? Give a little or a lot. Collectively we can reach this goal. You will not only be helping support veteran caregivers but you will help this wife get her husband’s haircut. It’s really long folks! You can give at the link below. Thank you.

It’s not ghosting, it’s caregiver burnout

In February of this year I vowed to take better care of myself. I even did a blog post on it, I called it Project Me. At the time I was in the mindset of actually doing it and have, to some extent. I started practicing daily mindfulness. Planning and executing my daily to-do list and getting on my treadmill 3-4 times a week.

Caregiving and living during a global pandemic stopped me in my tracks. We were paying attention to the Covid crisis in February and in early March it was clear we needed to hunker down. Like everyone else, we started to anticipate and buy those things we would need as we became housebound. What we did not factor in was the shortage of supplies that are necessary to our everyday lives. It wasn’t just things like toilet paper and alcohol, it was hand sanitizer, bleach wipes, masks, gloves, distilled water and the respiratory supplies the Big He needs to survive. He is on a ventilator and our daily needs include many of the same items people stockpiled and what hospitals use. The initial stress of getting supplies, distancing ourselves from everyone and limiting who comes into our home was pretty high and I often felt like I had no idea what I was doing. We knew that should the Big He get sick, we would not have the safety net of the hospital. More stressful is the fact that the Big He does not have the reserve of a healthy person and his outcome would most likely be death. Between family and my caregiver tribe much needed supplies started to arrive. We also began to ration the respiratory equipment and stayed vigilant to who was allowed around my family. He became sick in March/April (not covid) but we were able to do the things we needed to keep him home and get him well.

In addition to keeping my family safe and healthy, I was beginning to gear up for what has turned out to be the biggest fight to date with the VA. I had been asking, for over a year, for either respite services or a skilled night nurse a few days a week to give me much needed sleep. The answer was always, no! I never received anything to support the no decision, it was just, no. Now let me just say here, I am okay with a no answer if you can support it, but when you have no support either by regulation/directive or other, I won’t accept it and I will challenge it. Challenge is what I had to do. With the help of my caregiver tribe and lots of research and effort on my part, my request made it to National VA. From there, our VISN was roped in. [The VA VISN is a service network and ours is over most of the VA Medical Centers and clinics in the State of Texas. They are in essence the ‘Mother Ship’]. After about three weeks, a video meeting with the Director of our VA and discussions with VISN, skilled nursing was granted for a few nights per week. This was a HUGE win for those caring for our most fragile veterans in Central Texas and what I hope will be the State. It starts with one person…that is what I keep telling myself. All of this has left me physically, emotionally and mentally drained. I have withdrawn from everything and everyone with the exception of those in my home and my family. Most days, I find it hard to do anything but mindlessly watch TV or scroll through social media. Any fight I had, has been used up on the VA.

I recently read something about ghosting and that made me wonder if that is what I have been doing? I mean, it does seem like I just stopped communicating with friends. For me, I got to a point that I had nothing left to give. While scrolling social media, I would think to respond but all I seem to be able to do is just hitting the “Like” button. Finding the time and energy for practicing mindfulness, exercising or even getting my to-do list done didn’t happen. At a time when I need these things the most, my internal drive no longer worked. It’s stress, depression, and exhaustion or burnout. I know not getting enough sleep is not good for you, but the level of exhaustion I have been at was truly threatening my health and that of my family. Living with this level of burnout is like being in a boat on ice filled water. You can move through it but it is slow and one piece of ice has the chance of putting a hole in your boat and sinking you. You can’t just take time for respite or leave for a good night sleep if there is no one to cover you. Yes, we have daytime help but the Big He really needs two people in the home to make things work efficiently.

We have had a skilled night nurse for two weeks now and one of our caregivers spent the night recently. That is five days of sound sleep in 14 days. That is more sleep than I have had since last October. Those five days have been good for me. It is Sunday night and I can say I will start Monday with more energy than I have had in awhile. I am using the time I have night care not for catching up on the endless list of things to do, but for sleeping. I am planning on not pushing myself and listening more to my body on what I need. So be understanding and don’t take it personally if I don’t respond. I am not ghosting you, I am just being a caregiver.

All my love,

The She

Only in my dreams

For about a year now, I have noticed that either I don’t really have dreams anymore or maybe it is more of I don’t remember my dreams. This is weird because I would have crazy, vivid dreams. In our pre-ALS lives, part of the getting ready for work routine would be spent telling the Big He about my dreams. It was in my dreams where I would work out my problems. Problems always seemed to solve themselves in my dreams. That doesn’t happen anymore. I am pretty sure it has something to do with the emotional and physical stress I live with these days along with the sleep deprivation that has become the norm with cargiving 24/7.

For what ever reason, this morning I was dreaming. It was amazing and I remember when the Big He woke me up because he needed suctioning, I had this feeling of happiness in my heart. When things calmed down with the Big He I tried so very hard to get back to that dream, because only in my dreams are the Big He and I that couple before ALS.

So what was the dream? I remember the moments just before I woke up and in those moments, Tom was laying in bed with a scratch on his forehead. As I stood over the bed I asked what happened. He didn’t know how the scratch got there. So, I climbed in bed and snuggled close and rested my head on his chest. It was pure and simple comfort and peace when my head hit his chest.

As I tried to get back to that dream, the words “only in my dreams” circled around my head. ALS has robbed me and the Big He of the life we knew. It is now in my dreams I find my way back to that place of familiarity and peace of our pre-ALS life. This post-ALS life has taken so much from us.

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

Month of the Military Child # MOMC

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
Tom and Trey during physical therapy
Valentine Shenanigans

All my love,

The She