Tag: ALS

The Evolution of a Caregiver

On By tomstroopsIn Alpha Lima Sierra2 Comments

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 She

Bora Bora-2016

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.

How YOU doing?

On By tomstroopsIn Alpha Lima Sierra, Day-to-Day1 Comment

How many said that in Joey’s voice from Friends?

Seriously, “How are you doing” is a common question these days. I will be honest, for us that is kinda a trick question. Do you really want to know how we are or is it a question you ask because it is the polite thing to do? Most of you that know me (the she in the family), know that I am an open book.  I like to quote Popeye, “I am what I am”. So when you ask, I will tell you.

These days we are really just in survival mode. There is so much for us to wrap our minds around that it is very overwhelming. There is all the information given to us by the doctors regarding Alpha Lima Sierra on what to expect, drug trials, etc. The he’s military service may have had a part in this diagnosis as the rate of military members that are being diagnosed is at a higher rate than the general population (especially for those that served in the Desert Shield/Storm). In fact, the VA considers Alpha Lima Sierra a service connected disability. So there is now all the VA information we need to understand and digest. There are the things he is doing to ensure that the little he and I will always have his words to guide us and make sure we are taken care of and there are the hard medical things we need to get on top of before decisions need to be made. All of that and we must still maintain some normalcy in our home for our little he which includes things like work, school and baseball.

Do we have good moments/days, absolutely! But please don’t think that it means we are accepting of the situation or that we are just that strong. We don’t and we are not. It means, that we are having a good moment or a good day. Any strength we show is due to our love for each other, the support from our family/friends and our faith in the Lord.

Like I said above, I am an open book. While some things are hard to hear and many a tears are being shed (including ours), this is our new reality. It’s not always pretty, but it is what it is.

So how are we doing? We just got done with a good weekend. Good time spent with each other, the house kinda got clean and he did the laundry. So right now, we are good.

Love to you all,

The she.

Whisky Tango Foxtrot!

On By tomstroopsIn Alpha Lima Sierra, Day-to-Day, Living Life to the Fullest5 Comments

Yep, that’s right, WTF! That was really our first thoughts and I think I may have actually said it, when carpel tunnel syndrome turned out to be Alpha Lima Sierra. We are walking around in this fog of disbelief, grief, and anger. Oh, throw in confusion too. We have been trying to wrap our minds around what Alpha Lima Sierra means to our family, our marriage, our life. We know what the disease is, what it will do but what does it mean for us.

It means our world has once again been knocked off its axis. When we experienced the loss of our twin daughters in 2000 and the loss of first son in 2001 our world tilted. It is now even more catawampus. We know the grief path and know how hard it is.  We will have to learn to live in this new world of ours. Which right now is kinda hard. I know we will figure this out. Our goal is to LIVE and ENJOY the time we have as a family.

It means in our new world we will find love and laughter in the small things (and most likely the inappropriate things) and will find them daily. That’s just how we have always rolled. I have noticed the minutes we are together are more precious and the time apart is so hard. Let’s face it, Alpha Lima Sierra is the kind of disease that you know when the moment has gone it has gone. No do overs. So why waste a moment. Our family has always been the most important thing, but now we show this by our actions and not just our words. We don’t let the day to day crap take us from what is important. We see this in our little he as well. He has always been a caring kid, but now he takes time to send us sweet text messages like “I love you” instead of the “Can I get on Xbox now?”.

It means in our new world our walk with God has strengthened in ways we could not have imagined before. For our whole family. Knowing God is us watching over us, Jesus is walking beside us and the Holy Spirit is within us keeping the darkness away gives our family the peace we need to face this. We know we are not alone in this because He is with us. Now, let me just put it out there, we are scared and we do ask why and how can this be. But it is in the same breath we ask for His comfort and peace.

It means in our new world we are focused on doing all those things we have dreamed of doing and making all the memories we can NOW. We are not just thinking of bucket list items we fully plan on crossing them off. Trey is adding to the list as well. There is no more “when we retire” or “when our son is in college”. We are doing now.

So what does all  this mean to us. It means we are going to LIVE and ENJOY life NOW.