In February of this year I vowed to take better care of myself. I even did a blog post on it, I called it Project Me. At the time I was in the mindset of actually doing it and have, to some extent. I started practicing daily mindfulness. Planning and executing my daily to-do list and getting on my treadmill 3-4 times a week.

Caregiving and living during a global pandemic stopped me in my tracks. We were paying attention to the Covid crisis in February and in early March it was clear we needed to hunker down. Like everyone else, we started to anticipate and buy those things we would need as we became housebound. What we did not factor in was the shortage of supplies that are necessary to our everyday lives. It wasn’t just things like toilet paper and alcohol, it was hand sanitizer, bleach wipes, masks, gloves, distilled water and the respiratory supplies the Big He needs to survive. He is on a ventilator and our daily needs include many of the same items people stockpiled and what hospitals use. The initial stress of getting supplies, distancing ourselves from everyone and limiting who comes into our home was pretty high and I often felt like I had no idea what I was doing. We knew that should the Big He get sick, we would not have the safety net of the hospital. More stressful is the fact that the Big He does not have the reserve of a healthy person and his outcome would most likely be death. Between family and my caregiver tribe much needed supplies started to arrive. We also began to ration the respiratory equipment and stayed vigilant to who was allowed around my family. He became sick in March/April (not covid) but we were able to do the things we needed to keep him home and get him well.

In addition to keeping my family safe and healthy, I was beginning to gear up for what has turned out to be the biggest fight to date with the VA. I had been asking, for over a year, for either respite services or a skilled night nurse a few days a week to give me much needed sleep. The answer was always, no! I never received anything to support the no decision, it was just, no. Now let me just say here, I am okay with a no answer if you can support it, but when you have no support either by regulation/directive or other, I won’t accept it and I will challenge it. Challenge is what I had to do. With the help of my caregiver tribe and lots of research and effort on my part, my request made it to National VA. From there, our VISN was roped in. [The VA VISN is a service network and ours is over most of the VA Medical Centers and clinics in the State of Texas. They are in essence the ‘Mother Ship’]. After about three weeks, a video meeting with the Director of our VA and discussions with VISN, skilled nursing was granted for a few nights per week. This was a HUGE win for those caring for our most fragile veterans in Central Texas and what I hope will be the State. It starts with one person…that is what I keep telling myself. All of this has left me physically, emotionally and mentally drained. I have withdrawn from everything and everyone with the exception of those in my home and my family. Most days, I find it hard to do anything but mindlessly watch TV or scroll through social media. Any fight I had, has been used up on the VA.

I recently read something about ghosting and that made me wonder if that is what I have been doing? I mean, it does seem like I just stopped communicating with friends. For me, I got to a point that I had nothing left to give. While scrolling social media, I would think to respond but all I seem to be able to do is just hitting the “Like” button. Finding the time and energy for practicing mindfulness, exercising or even getting my to-do list done didn’t happen. At a time when I need these things the most, my internal drive no longer worked. It’s stress, depression, and exhaustion or burnout. I know not getting enough sleep is not good for you, but the level of exhaustion I have been at was truly threatening my health and that of my family. Living with this level of burnout is like being in a boat on ice filled water. You can move through it but it is slow and one piece of ice has the chance of putting a hole in your boat and sinking you. You can’t just take time for respite or leave for a good night sleep if there is no one to cover you. Yes, we have daytime help but the Big He really needs two people in the home to make things work efficiently.

We have had a skilled night nurse for two weeks now and one of our caregivers spent the night recently. That is five days of sound sleep in 14 days. That is more sleep than I have had since last October. Those five days have been good for me. It is Sunday night and I can say I will start Monday with more energy than I have had in awhile. I am using the time I have night care not for catching up on the endless list of things to do, but for sleeping. I am planning on not pushing myself and listening more to my body on what I need. So be understanding and don’t take it personally if I don’t respond. I am not ghosting you, I am just being a caregiver.

All my love,

The She