Tag: ALS Caregiver

white and brown wooden tiles

Anxiety and Fear

On By tomstroopsIn Alpha Lima Sierra1 Comment
white and brown wooden tiles
Photo by Suzy Hazelwood on Pexels.com

After the Big He received his trache and went on a ventilator, severe anxiety and fear were two things that became a constant with him. It was something that I had not seen in our years of marriage. Yes, I had seen him anxious at times and when we lost the babies, there was fear but this is different. This level of anxiety and fear is all consuming and here is the hard part to admit…it has changed him. This is where trust and love play a huge role in our relationship now. The fear and anxiety are often seen as anger and rage. It has been hard to see and live with such intense emotions. I have never been on the receiving end of the Big He’s anger and now I have to constantly tell myself he is not angry or raging but it is the disease causing this. Some days I can easily see the difference and some days it all blurs and his words and actions break me. Rage is actually something that is new to me. It was only after talking with other caregivers that I began to understand that the emotion I was seeing from the Big He was anger on steroids, it was full on rage.

See, this is a side of the disease that I, like many of my caregiving brothers and sisters, only discuss between us and only with those that we see as safe. For me, when I do talk about this with my ALS and veteran caregiver friends, I do so knowing they do not judge. They understand how the person you married becomes someone else. This is actually pretty common with not only ALS caregivers but those that care for veterans. While my husband is considered a pre-911 veteran with a service connected disease, many of my post-911 caregiver friends have experienced the same. Maybe not from the place the Big He is coming from but from their veteran’s invisible wounds like TBI’s or PTSD.

This is the part of caregiving most people don’t even think about. Seriously, when you hear of caregiving do you think of the emotional aspect? You probably think of the making meals or helping with personal care. There are just so many facets to this life which is why I am opening myself up to help bring awareness to not just the caregiving to someone with ALS but those that help our nations wounded and ill.

I can tell you that when the Big He is angry with me, which happens more and more for all sorts of reasons, I find my mood changes. I don’t like my husband to be mad at me. I sometimes walk on egg shells and sometimes I just stay away and get lost in binge watching Netflix. Luckily his angry moods don’t last too long and before I know it he is back to the man I have grown up with, the man I love. Anxiety and fear fade away because of trust and love. So that is what I hold on too as we navigate this later stage of the disease, trust and love.

All my love,

The She

Storm is coming…

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

This phrase, Storm is coming, in my family is actually my Daddy’s way of getting rid of all the kids. Even when the sky is absent of any clouds, when we hear Storm is coming, we start packing up to head home.

Tonight, that phrase popped into my head but for a completely different reason. That reason, Alpha Lima Sierra. Tonight, we are in Houston because The Big He has ALS clinic tomorrow. For those not in the ALS know, Clinic is an all day event. You meet with a Neurologist, Pulmonologist, Respiratory Therapy, Physical Therapy, Occupational Therapy, Nutrition, the wheelchair vendor, and various others that do research into this disease. For many, going to clinic means hearing how much you have progressed. There is no rehabilitation for this disease. Most pray for a plateau in their progression but for many this doesn’t happen.

The storm I see heading our way is progression. Some progression is like a breeze, you feel it but there is not much to see. The storm of progression that is approaching us will change things, will leave a path of tears and fears in its wake. The Big He is getting weaker. His ability to breath on his own is becoming harder. He is losing his ability to do those things we take for granted like standing up, eating dinner, showering, and talking. Tonight, we had to quickly figure out the transfer from wheelchair to shower seat. Unfortunately I was not able to get a room with a roll in shower. We got an accessible room with a tub and bench. The difference is HUGE when it comes down to taking a shower. He was frustrated with me, I was scared that I might drop him when I helped him get up…in a split second I was running the “what if’s” in my head and what I would nedd to do if he fell. All is fine now. He is in bed, mask on and trying to get some sleep. The drive, dinner and shower exhausted him. That’s ALS. Tonight, I felt the fear and anxiety of this upcoming storm. This next change in the progression will be drastic. It will be a huge shift for the Big He, for the whole family. He will become more dependent on others.

I hate this disease. Nothing is holding back this storm. We must just watch. We are helpless when it comes to the progression. We know all we can do is try and stand as strong as possible to withstand this storm. We also know the calm will also come. We will adjust to the changes that come. We will get back to a routine…until the next storm.

A storm is coming. I can feel and see it. Our faith and love will keep us strong.

All my love,

The She