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.
All my love,
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
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.
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,
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,
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 ALS journey can be ever changing, always progressing. Over the last 7 days, our ALS journey has put us in the ICU. The Big He had what we thought was just bad allergies causing lots of drainage/secretions which we were trying to stay on top of. Tuesday a week ago, we made the decision to head to ER as things were just not getting better. We learned the Big He had a mucus plug along with pneumonia. We later learned that tests showed he actually had the common cold. Needless to say, the big he was admitted to the ICU. He was able to pass the mucus plug, the pneumonia seems to have cleared but we are left with a very worn out Big He. The toll that the cold took on him is tremendous. Is there recovery? There is but returning to his pre-cold self regarding energy and abilities…not sure.
This has been an emotional rollercoaster watching him the past week culminating with an all out episode of losing my shit on Friday/Saturday. The word “trach” was being introduced to us as the best avenue moving forward for the Big He. I actually said the phrase, Fu$kity, Fu$k, Fu$k, to the doctor. Seriously, that is not me keeping my shit together. The decision to place a trach is such a personal one for the PAL and their family. I have reached out to other PALs that have chosen the Trach to here about their journey and on their decision. We have watched the amazing, fulfilling lives that PALS with Trachs have with the use of all the new technology available.
The Big He is slowly improving. Meds to keep him calm/relaxed or being lowered. His ability to tolerate time off his non-invasive ventilation has begun which is a positive step forward and last night he actually slept most of the night (which ment I slept too). I am anxiously waiting for the Doctor to arrive this morning to talk with us about the plan moving forward. Will surgery to place a Trach occur this week? Will he be given a few more days to see if he can recover more and we can postpone the surgery for a little bit longer?
I will update the blog once we know how we are moving forward and give a status of the Big He.
To our family and friends that have not just supported us but wrapped us up in love and kept us going I can’t thank you enough. Tom’s amazing caregiver, Amanda, has been a lifesaver to us ensuring the Little He is being taken care of so I can stay with the Big He.
For those of you who are just finding out about this please add our family to your prayers.
All my love,
In a few months we will mark 3 years since Alpha Lima Sierra entered our world. 3. YEARS. Where we started…where I started as a caregiver is quite different to where I am now and it will look crazy different in the future. The future…I pray daily that there is a future for me as a caregiver. I just have to say this, Isn’t it funny how I need to throw in that statement to clarify things. I don’t want anyone to misunderstand things. Maybe I should have a standard statement I use for every blog like:
Please don’t misinterpret what I say because I know things could always be worse. I know there will be a time that I pray I could be a caregiver…I know my husband has a terminal disease. I know it doesn’t matter what I do or what I say, there will be guilt in the end. I also know everyone’s journey is different. ALS impacts each PALs differently. ALS impacts each CALs differently. My relationship with my husband is different then someone else. We have different past experiences that have formed us, made us who we are. We express our fear and joy in different ways. I will do me and you do you.
Back to what I was saying, I am evolving as a caregiver. Before ALS I probably would not have felt the need to make a statement like that. The evolution of me includes some things I can say I am happy about like falling into advocate role and using it as a way to release all this negative energy and use it for good. There are some things that I am not happy about like the slight (the Big He would most likely question my use of the word “slight”) shift in my ability to deal with…stupid people. OMG I sound like the Big He!!! My patience is on a hair trigger these days. But it is what it is, this journey changes you.
I am happy I can be an advocate for the Big He. I have grown so much in my advocacy efforts. I never knew how motivated I could be to get something done, until my husband’s life and well being was on the line. Where once I would let my head overrule that voice that would say, “wait, something doesn’t feel right”, I now listen to that inner voice and use that to help guide me. I never dreamed that I would have the desire to advocate for others with the same passion as I do for my husband but I do. I only want the best for other Veterans with ALS and their Caregivers. I want them to focus on the time they have and not fighting for equipment or services. The thing is, I enjoy doing this. I think this is another aspect of my evolution, to see that I can help the Big He and others at a time that I feel so helpless. In other words, I am embracing my control issues. I do know I have things to learn when it comes to advocacy work. My advocacy efforts are still evolving and I am good with that. I know that surrounding myself with amazing, strong advocates that I look up to will make me better as I know I have a lot to learn.
I am happy I can be a caregiver to the Big He. Is it tough? Yes. Do I always do things with a happy heart? No. When I am tired I get grumpy. When I get scared I cry. Being tired and being scared comes with the ALS territory but I am evolving. Things that use to scare me with the Big He’s care now doesn’t. I now know that when I am tired at the end of the day when the Big He gets settled in for bed he and I can both rest. I also know that there will be bigger and scarier things that will happen and I will learn what I need to and we will get through that too.
I am also evolving as the She in general. I can’t quite articulate exactly how, but I am. I feel it in how I react to different situations or to people. I see myself as a different version of the person I was before ALS not just advocacy and care giving but as a person. After the babies died I knew I changed. I became an angrier version of myself. The version I am evolving into now is someone that sees its what a person does not what they say that mean something. I put more stock into actions these days. While I like to think that before ALS I was my own person and didn’t care what people thought of me but now as I feel myself changing, I see that it really doesn’t matter what other’s think of me. What matters is what I think of myself. There are areas that still need evolving but I am good with that. I have no idea what version of me will be standing after this disease takes my beloved but I live by motto of Faith over Fear and know that my journey will lead me to the person I am supposed to be.
“Spiritual evolution is part of every soul’s destiny on Earth, and each soul grows and evolves at a different rate. You are right where you need to be.” James Van Praagh
All my love,
The Big He’s update: Progression. It’s just the name of the game. I don’t know if progression seems to have speed up as much as we hit the tipping point of independence and dependence. That was a huge shift. The Big He has gotten weaker in several areas. His physical strength is limited. He is seeing paralysis in his hands and feet. His voice is weak and slurred to the point of frustration for everyone. I fear soon his voice will be gone but I am thankful we have a communication device and the Big He recorded many, many things in his natural voice. He also banked his voice so that is something to be thankful for. He can still eat and enjoy food so he is indulging on all his favorites. With Christmas around the corner we have had lots of baked goods which he is LOVING.
The Big He and I had the amazing opportunity to participate in a video series about Veterans with ALS. The Pharmaceutical company, Mitsubishi Tanabe Pharma America, has taken an active role in providing educational assistance to people living with ALS and their caregivers. They have also stepped up to fill what I consider a void on the awareness side regarding veterans living with ALS. We are so very excited that this sub-group of people living with ALS has been given a bigger voice. Thank you MT Pharma America.