There are so many layers to caregiving. These layers include the relationship we have to the care recipient, the physical aspect of the care, and the emotional and mental impact that caregiving takes. The base of all these layers needs to be strong to support the heavy load that caregiving can bring. While early on in my caregiving life I would say without question, love was where the strength to our foundation came from, but now I think it is trust and love. Can you love someone without first trusting them? After the Big He was put on the ventilator I would tease him that I was his Boppy. That was the term we used for the Little He’s security blanket when he was a baby. This was because when the Big He would get anxious or scared, he would want me close. I was becoming his security blanket. He trusts me and knew if I was there I would protect him with everything I can. Even on days when I am not his favorite person, he still trusts me. He trusts me to ensure every aspect of his life runs smoothly. Heck, sometimes he trusts me so much he thinks I can read his mind. For this post, I wanted to start with the foundation for our caregiving journey. As I post throughout this month you will understand that even when an ugly layer of this journey is exposed, you see it for what it is, just a layer and it is in those moments we rely on our strong foundation.
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?
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.
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.