In the advocacy world, May is a twofer for veterans with ALS. Not only is May the month of the military caregiver but it is also ALS awareness month. Lucky us, right?! This month I am going to do my best to share with you the real story. Not the one I polish just enough for prime time or where I use humor to soften the blow of what living an ALS life looks like from the perspective of the wife and caregiver.

As I pull back the curtain, let me give you the highlights of the last six months to show you what has been going on:

November 2020-As if dealing with ALS and Covid wasn’t enough, the Big He developed a kidney stone which sent us to the emergency room due to the pain.

December 2020-The pesky kidney stone was still causing problems so we went back to the emergency room where an MRI showed the stone had not moved. The Big He was admitted to the ICU because that is the place you put people on ventilators. The ICU has several pods and we were placed in the one that did not have active Covid patients. The Big He had a procedure to remove the stone which went well until he developed sepsis. He got sick, like really sick. It scared me. It scared him once he came back to the living and was able to understand exactly how sick he had gotten. Two days after the scariest part of the sepsis we were sent home. Not because he re-bounded so well, but because we needed to get out due to the increasing Covid cases.

January 2021-The Big He developed pneumonia. We were on it very earlier and were able to avoid a hospital visit but it was pneumonia and he already has a weakened immune and respiratory system so it was another scary moment.

February 2021-Winter came and she was called SNOVID. Texas was hit hard. We did good regarding electricity because in early Fall 2020 I had a natural gas whole house generator installed as a “just in case”. Never in my wildest dreams (and I have a crazy imagination) did I consider losing power to winter. Our part of Texas does not have a real winter. It may get cold for a day or two but not multiple winter storms in a row. We had to get help from neighbors to ensure we had enough distilled water for the Big He’s humidifier that is part of his ventilator circuit. The paid caregiver help we use, for the most part, could not get to us except for a few days and only for a few hours. So the Little He and I were it. Emergency services were limited and no guarantee they could get to us if something did happen. I spent my days and nights scared. Scared something would happen that I would not be able to handle.

March 2021-This was the month of the broken down caregiver. During March I had to go to the ER due to fever (101 plus) and belly pain. My trip to the ER could not happen until the Big He’s care was covered. Luckily this all happened on a night that we would have skilled care. After five hours in the ER I was released. I had developed acute diverticulitis. WTH??? It took two good days for me to feel well enough to start really helping with the Big He again. The infection took me down hard! Maybe two weeks after the ER visit, I made another ER visit. This time because I had sliced my wrist while doing dishes. Four staples and helluva lot of pain, I was home. The paid caregivers had to really step up along with the Big He to allow me the chance to let my wrist heal…you know so I didn’t pull any staples out. Which did happen. Well not out but one staple was so twisted I had to remove it just a few days after it was placed.

April came and went without issue, well not huge like the previous months. I did realize though that the past several months had really traumatized me in the sense that I am not as prepared as I thought I was. That you can “what if” and prepare all you want and you are really not ready for what life throws at you.

All my love,

The She

How do I say…

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?

All my love,

The She

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