In a moment…

The last four days have been busy, tiring, and frustrating. Our caregiver A had to take a few days off, leaving me to be the only caregiver for the Big He. The Little He is here and there is help for household things but the hands on care of the Big He is done by me.

Many, many ALS caregivers go it alone and God Bless them because it can be overwhelming at times to be THE person responsible for careing for a loved one. Especially when things don’t run smoothly. For example, the Big He can no longer stand or walk on his own. We use a ceiling mounted lift to get him from the bed to the bathroom. The lift went out just before caregiver A was to be gone for two and half days. So moving him would now need to be with a portable hoyer lift. We have one as a backup which I am so glad we had. The first day alone, the battery went dead just as I had the Big He in mid lift off the bed. In my head I was thinking, holy crap..WTH do I do now. Out loud I reminded The Big He how much he loved me. I was able to get him lowered, charge the battery just enough to accomplish our needs and get him settled back in bed. Now, just so you know, to get him out of bed I had to pull all pillows off the bed, pull off foot board, position the bed so I could roll him side to side to get the sling under him, disconnect his feeding tube, change him over to a portable ventilator, disconnect the suction line and get it moved to the bathroom in case we needed it, get the bathroom prepared, line the Hoyer up and then hook him up and start the transfer. When things are done, the whole routine is done again but backwards. Start to finish, it took almost an hour from the time the first pillow came off the bed to the last pillow situated for his comfort. In between there were little stressors like the battery issue, getting his hose hung up and needing to go grab the cough assist. He blew me a kiss once he was settled back in bed and in a moment my world was calm and all was good.

It takes just a moment for something to jerk us back to what is important. It takes just a moment for us to remember why we do what we do.

Yesterday the Big He asked me to push the twin bed I now sleep in next to his hospital bed. It’s not a simple thing mainly because we need access to both sides of his hospital bed but I did it anyway. We went to sleep last night together in our pretend king size bed. All day I have been moving the bed apart and back together as I care for him. This evening he kept pointing to his hand for me to hold. So I pulled my pillow close to his and held his hand. In a moment, the stress melted away as we held hands and my heart remembered this feeling. Snuggled close, holding hands and just being together. I am so incredibly blessed to have met the Big He and spend my life with him. I know what we have is truly special…and in this moment I thank God for my life. As hard as this season of it is, I have my husband and I will take every moment I can get.

All my love,

The She

Good for the soul

Last week I had the opportunity to attend the Indianapolis Hidden Heros/Today Show event. The Elizabeth Dole Foundation (EDF) and its Hidden Heros Campaign were featured on the Today Morning Show. The show dedicated a whole hour to military caregivers. Caregivers for veterans of all eras were brought together for what they had in common. They were brought together because they love and care for wounded, ill or disabled veterans. I mentioned to another Dole Fellow that I was having a hard time putting into words exactly what being with these people meant and she hit the nail on the head when she said, “it has been good for the soul.”  She was so right and as I reflect on last weeks trip (and talk it over with my  therapist) I realize that I was actually unaware of how that part that makes me, me, had been drained. The stress of this disease, the fear of my future alone without the love of my life and the realization I need something of my own and not just be seen as the Big He’s caregiver had drained me. Who knew a crazy, busy two days would actually fill my soul.

The first full day in Indy was a busy one. There was a luncheon at one location followed by art therapy and dinner at another location. This was my first event as a Fellow and my first real trip since the diagnosis that I have done without the Big He. For this trip, I had two goals I had set for myself. I wanted to meet and connect with as many people as possible and step out of my comfort zone and just be…alone. I think if I was to follow my old habits I would have stayed close to the few caregivers that I knew through Facebook (and I did a few times) but I also ventured out and struck up conversations with other folks as well. Guess what, I survived and I met some amazing people who have been through their own extremely stressful time. Some still are, some are finding comfort in rehabilitation and a new normal and some know that their life will continue to be guided by the visible and invisible wounds their warrior suffers from. Everyone’s journey is different but we all share the same feelings of fear, anxiety, being overwhelmed and a since of loss for ourselves and for those we care for. As I spoke to folks I found that it wasn’t really like talking with strangers it was more like talking with family I just hadn’t met yet and trust me, I come from a big Italian family and there are cousins I have never met. I am sure if I did run into them, it would be the same, the sharing of a bond that cannot be broken.  We are caregivers of disabled veterans. 

While there were plenty of smiles, I did have a few moments where the sadness crept in and over came me. I saw families. Husbands and wives, fathers and sons and daughters. It seemed as if everyone had their veteran with them and I did not. So, like the problem solver that I am, I video chatted with him and let him just watch and take the excitement in. The evening was made more special sharing this with him. While I was showing him the room I was able to point out the amazing Senator Dole along with Savannah Guthrie and Tom Hanks. It just so happened that while I was sharing the excitement of the day with the Big He, a Today Show camera and producer caught me and soon Tom Hanks was video chatting with my veteran. How cool is that. While the Big He could not physically be there, he was there and could be a part of the festivities. Technology can be a headache sometimes but in this case it was a blessing. 

Meeting and connecting with other caregivers and experiencing the event with the Big He had my mind on over drive by the evening. Once we got back to the hotel, I couldn’t sleep so I figured I would accomplish my second goal which was to do something that included a party of one. I went to the hotel bar, something I would have never, ever done before. I needed to prove to myself I could sit by myself, at a bar, and survive. I know that may sound silly to some but I have never really done anything alone. I am the youngest of four, I went from my parents home to married to the Big He. Being alone is something I have never had to do. Knowing the end game for this disease, I know I will be alone. Yes, I will have family and friends and of course the Little He, but after some time, everyone will fade into the shadows and go back to their own lives, and I will be alone. Doing something simple like having a drink by myself was practice for when the Big He passes. I think of it as I am a widow in training. 

The trip concluded with the filming of the Today Show. Even with thunderstorms outside the excitement in the room as we took part in the show was as energetic as the lightening from the storms. You could feel it. It made my heart full, my soul full to be surrounded by strong advocates willing to be open and honest about their journeys. There are so many stories out there each one filled with sadness, happiness, yes comedy but most of all each story is one about love. The Today Show helped to get the conversation started about Hidden Heros and the love we have for our veterans. 

All of this has energized me, to step up my advocacy game. If I can be half as amazing as the women and men I met then I am on the right track. This is something I can do that is mine. I can be an advocate in addition to a caregiver. 

So yes, the trip filled my soul in unexpected ways. It made me get out of my comfort zone, it allowed me to take baby steps as a widow in training and it gave me a purpose.  I have a voice and can use it to advocate for veterans and caregivers. 

Thank you Senator Dole. Thank you Dole Foundation team. Thank you Hidden Hero’s. Thank you all for showing me…me. 

 

All my love,

The She.

 

So, the Big He did get to video chat with Tom Hanks twice. In the picture of Tom Hanks holding a phone, that was the Big He. So many people were encouraging and helped to keep the Big He involved. His spirits have been lifted. He is doing much better these days. He is really finding his photography to be therapeutic. Oh, and by the way, seeing Sheryl Crow did not suck.

SIMPLE

If you are in the ALS know, you know it’s ALS Awareness Month. If you are in the Military Caregiver know, May is Military Caregiver Month. So, as a the caregiver to a veteran with ALS apparently May is THE month!

This morning I was able to get a few minutes to myself. I went outside to enjoy coffee and greet the morning. As I took in the silence, my mind kept wandering to the word SIMPLE. This word had my thoughts bouncing all over the place. This is something that happens these days as it often feels like my mind is a pinball machine with the ball my thoughts and the bumpers and flappers the subjects.

When thinking about the word SIMPLE I went to both how life use to be so simple and how supposedly simple things have created complicated outcomes.

A simple weakness in a finger turned out to be ALS.

A simple request for a non-invasive ventilator turned into a congressional request.

A simple cold turned into pnumonia and ultmately the need for a trach.

A simple request to the VA for a hospital bed appropriate for Tom turned into a request that I had to elevate to local VA management and include both our Congressman and our Senator in the request.

A simple UTI turned into sepsis.

A simple trach change turned into 3 days in ICU.

I find it hard to remember when things seemed simple, but I know it happend. I guess if I think hard enough I could come up with examples but that would require me to quiet the thoughts and focus…something my pinball machine mind doesn’t allow these days.

I was also thinking that with simple things turning into complicated events, complicated events are overcome simply by the love I have for my family.

I am simply a military caregiver to my husband with ALS but I hope through awarenss you have learned there is no such thing as simple when it comes to [military] caregiving and ALS.

All my love,

The She

The He’s update: He was released yesterday from the ICU after getting his trach upsized. He is adjusting to his new normal of partial paralysis, trach and unable to speak and eat. He is focusing on his hobby of photography which has led him to upload his artwork to the website Fine Art America . You should check it out and check back often. The amazing part is he is editing the photo’s using only his eyes. Soon he will be taking pictures again using only his eyes. I can’t wait to see the world through Tom’s eyes.

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

Quiet time

Looks like my plan to have a few minutes to unwind was foiled by Lou.

I planned carefully, waiting for the right day to get not just hopefully a good night, restful sleep but also carve a few minutes to take a to take a breathe. I privately hired our caregiver Amanda to come in and relieve me..this after all the time she spent here this week. Only because there are 2 people that know how to care for the Big He. Know his needs. Know by his facial expressions what he is saying..and yes, “Are you fucking stupid” is something one can say loud and clear with their eyes. It happens, usually followed by me or Amanda saying, “umm, my bad”.

It has been a rough several months for the Big He. Hasn’t been the easiest for this caregiver either. Days turned into weeks in the ICU. Sleeping in a chair, listening to the monitors connected to the Big He did not make for good rest. The stress of everything was overwhelming. Am I whining, maybe a little bit. But please make no mistake, I would do it over and over if it meant another moment, another day with my love.

As Caregiving goes, are you really ever resting or taking a moment, naw, always keeping one eye or an ear out to make sure all is good. Control issues, yep, no doubt about it. For now, that is how I feel I need to be.

So while I warm my tired mind, body and soul a few minutes, I am also keeping an eye on the activity in our room where the Big He is and Lou keeps reminding me, its not about me…its about throwing the damn ball so he can chase it. BTW, there are now several balls floating in the hot tub along with the spilled drink (scotch) that Lou’s big ole paws hit during one of his ball drops.

Life of a caregiver…one she wishes she never knew. #fuals #tomstroops #suckitals #ThisisALS

In my own words…

I was asked to do a podcast a few weeks back. It was on a day that turned out to be an emotional one. All my days are emotional but this particular one had me grieving the professional life I had. I know it is not a forever thing and I will return to work at some point. This was just another hit that ALS has given to our family.

Other podcasts from This Caregiver Life can be found on Anchor. Thank you Mary Hahn Ward for continuing to bring awareness and advocacy to not just ALS and the veteran connection but also to what caregiving is truly about.

The Path Ahead

Photo by James Wheeler on Pexels.com

Our ALS journey has taken a new path. On February 28th the Big He received a tracheostomy (trach) tube. Did we know it will eventually come to this, yes. Did we think it would be so soon, absolutely not. That is because sometimes we like to pretend we are making the choices on this journey, on this path that has been layed before us. With this part of the path, it was unknown to us that pneumonia would cause such havoc on the Big He’s ability to manage secretions but it did. Finding our way back to the ER was due to his inability to cough up mucus.

In late February, the Big He found himself being admitted to the ICU again. This time the conversation was immediately directed to his need of a trach. He had said he wanted one when the time came but there was still that question of would he really choose the trach or would he decide against it. The decision to get a trach is not an easy decision and one that many with ALS decide against. Everyone has their reason for opting in or out of the trach. Some choose not to get one based on the level of care that is needed, the financial impact or just not wanting to continue to live an ALS life. It is hard for sure, for everyone but there are those, like the Big He, that see the trach as another option to continue to live. The Big He just wasn’t ready for his journey to end. Many don’t have that option, but the Big He did at least for now. There may come a time where there is no choice left, and we will have to take a new path but until then, we continue to move forward.

Learning to live life with a trach has been difficult but to be honest but no more difficult then living life suffering to breathe because of too many secretions and not being able to cough them up. The Big He must now be dependent on others to ensure he is connected to his ventilator and to make sure he receives trach care to keep the trach site clean. I can tell you that the Big He is breathing better. You can see it in his face. He seems more relaxed. He seems to be sleeping better and more importantly, his anxiety over not being able to breathe is becoming more controlled. As caregiver’s we had to learn to properly clean his trach, to change his inner cannula and to suction him so he can remove secretions and breathe. While we have only been living this ALS/Trach Life for 3 short weeks, we have already become quite adept at suctioning and inner cannula changes. We too have been able to gain control over our anxiety over watching the Big He struggle to breathe. Speaking of anxiety….shout out to the makers of Xanax! Glad we have it to get us through.

Now, while things with the trach or getting better and we were released from the hospital last Friday, we did find our selves back in the ICU this past Monday. This time I was suspicious the Big He may have a UTI. He did. He also had an infection in his blood…he was septic. Yep, while we were hesitant of coming back to the hospital so soon after being released, I am glad we did. In fact, we only came back in at the direction of our VA Home Based Primary Care NP. We are grateful for her direction. The infection could have got to the point where that choice to continue this path would have been taken from us. Tonight as I write this post, the Big He is doing great. The antibiotics are doing their job. He is feeling better and has been smiling and laughing more than I have seen in many months. That alone tells me we are on the path we are supposed to be on.

The last several months have been difficult. Living weeks at a time in the ICU is stressful. Juggling my time with the Big He, trying to make time for the Little He, managing the Big He’s care both in the ICU and the VA for follow-up care has been difficult. I won’t lie either that sleeping most nights in the ICU sucks! Like sucks big time. If I am being honest, I am tired. Mentally, Emotionally and Physically. While we do have folks that want to help, at the end of the day, this journey we are on is ours. The Big He, The Little He and mine. The bulk of the caregiving is falling to me and the Big He’s VA provided caregiver. It’s the way it is. Life continues around for everyone as we struggle to make sense of this path.

We are hopeful the beginning of next week the Big He will come home. I am looking forward to being at home and being able to spend more time with the Little He and of course our four-legged family and boy and I am looking forward to sleeping in a bed and not a chair.

I am not sure what lies ahead on our journey but I do know our path has been set and we walk by faith knowing we will be taken care of no matter where this path takes us.

All my love,

The She

Coming back from Pneumonia

Coming back from pneumonia has been incredibly difficult. ALS has weakened not just what you can see in the Big He but what you can’t. His breathing has been impacted from what seems like the beginning of this journey. His diaphragm, a muscle, has been weak since before we started our second year into this disease. It started with not being able to breathe lying down so we raised our adjustable bed. Then raising the bed didn’t help so he was given a non-invasive ventilator to wear when he slept. Slowly over the last year, he has required the ventilator more and more. When he slept, took naps or just had a hard time catching his breath. We use to focus on how many hours he was on the machine, but now we look at how much time he can come off the machine. While in the hospital, he was on his ventilator for the most part 24/7. He tried to come off, and did for 10 or 15 minutes but something new would happen and back on 24/7 he would go.

Now that we are home, the Big He is still on his ventilator. He has been having these horrible coughing fits. What is really happening is issues with moving mucus from the lungs up. In other words, he can’t cough anymore. The residual effects of the pneumonia along with the natural mucus produced is causing him hell. To the point he needs some serious medication to get through these coughing fits. It is this lack of mucus management that will bring us to the next phase of ALS. That is, the need for a trach. This is an incredibly personal decision. One that is not made lightly. One that many with ALS choose not to have. The Big He, as of now, has chosen this as his next step. He is not done living this life. He has more memories to make with the Little He. When will this happen. Some time in the near future. This will hopefully give us more years together as a family as well as give him a better quality of life, cause the coughing is tiring him out. This decision will require us to hone our caregiving skills. We will need to open our home to more people as it will take a village. Family and friends help as they can, but the Big He and I know that moving forward we may need to hire care so that we can ensure we are covered. It’s not just for him, it is for me as well. I have been going day in and day out and only this weekend was able to have a full 8 hour break. I slept through the night since the Big he went into the hospital. The Big He’s other caregiver came in and spent the night, giving me a much needed full nights sleep.

Along with the greater level of care that the Big He currently needs, I am or should I say, I was trying to get a hospital bed for him. It is common practice for the VA to supply durable medical equipment (DME) to veterans in need and we knew that a hospital bed would be provided, but what we didn’t realize was that there are different types of beds for different types of needs. Getting a hospital bed, especially for diseases like ALS requires a specialty bed. While in the ICU, the Big He had a special bed for pulmonary patients. There were only a few in the ICU and the Big He qualified for one. As I learned more about the bed, I learned that it had special features not found on other beds. This was and amazing bed, so when the Big He was ready to be discharged I just assumed the VA understood the concept of the right bed for the disease, but they did not. I learned that a more one size fits all approach is what our local VA leans towards. Requesting the appropriate bed for the Big He was met initially with resistance. It actually took multiple emails from me, a congressional inquiry from a Congressman and a Senator, an email to the Secretary of the VA in Washington DC, a call between the sales rep for the bed the VA wanted to give me, a call between the sales rep and the bed I wanted for the Big He and finally me reaching out via social media to other veterans with ALS regarding the types of bed’s being provided by their local VA to finally get the right bed for the Big He. That’s a lot huh? All this while taking care of the Big He and his immediate medical needs, ensuring the right clinicians where coming to the house and being a mom to the Little He. Ensuring my husband had the right bed should have been a no brainer for our VA, for those that work with ALS Veterans. It scares and angers me that other veterans with this horrific disease or being provided DME that is not suited for this disease. They are provided DME based on someone that has zero idea what ALS is and what the needs of the patient are. That DME is provided based on a cost savings approach instead of a quality of life standard.

While I am beyond thrilled that the Big He in a few short days will be sleeping in his new, appropriate bed, that joy was short lived. This weekend, we needed to move our king bed out to make room for the new hospital bed. We actually moved the king mattress, one adjustable base and our headboard to storage. I bought a twin mattress for the other base so I can still sleep in the same room as the Big He. As I was stripping sheets and moving things around the grief hit me. In fact, my breath was taken away once. The hospital bed is the end of us sleeping together in the same bed, sleeping as a married couple. There is no coming back from this. There is no rehabilitation that will happen. We both know what moving our bed out means. I also know that when the bed comes back into our room I will have unwillingly exchanged my title of wife for that of widow. The memories of the love we had for one another will only be known to me when the bed returns.

With ALS, there is constant grieving. Grieving for things you never thought would be an issue. I did not once think that I would be hit with a wave of grief getting ready for the bed I fought hard to get for the Big He. I didn’t think I would grieve the loss of not being able to touch him as I slept or roll over for a good morning kiss. The snuggles just before we drifted off to sleep or the conversations of our day or our future as we got ready for bed. The little things you don’t think of until they are gone.

Yep, coming back from pneumonia has been hard on all of us.

Tonight, if you share your bed with a loved one, savor the goodnight kiss, enjoy the cold or warm feet, commit to memory the feel of having someone next to you.

All my love,

The She


I See You

After 16 days in the ICU we are going home. Pneumonia, mucus plug(s), high heart rate and other shit has kept Tom in the hosptial. Is he 100%? Nope, but staying in the hospital to get him better is not a good option AND he won’t ever be 100%…he has ALS remember.

The Big He has overcome a huge ALS battle, in fact I call this a win. He is coming home.

So to you ALS, you can SUCK IT!

To our amazing NAMC ICU Nurses…Thank you. I was so scared and watching the Big He struggle the past 2 weeks was like a continuous crushing of my heart. I think I was only able to keep my shit together because of the calm demeanor you kept.

Thank you for taking such wonderful care of my love. Hope the next time we see each other is at HEB.

Goodbye ICU Room 102!

All my love,

The She