It’s been six months since I walked away from my career to be a caregiver. I’d worked all through Brian’s ALS diagnosis and disease progression. For seven years I held it all together. I thought I could continue to do so and didn’t anticipate actually having to leave my job. It seemed as though I would be able to keep things going yet as life often does, it had a different path in mind.
MAKING THE DECISION
A patient like Brian requires skilled nursing care due to his trach. Care is extremely expensive. Not only that but it can be a challenge to find quality care. I’d crunched the numbers over and over I could see no other option than to stay home to care for Brian. I’d worked for the same company for 15 years, often working 60 and 80 hour weeks at the peak of my career. Though a corporate career comes with its own set of challenges, I was loyal, driven, and did well within my company. Not only that but I’d made many genuine friends there along the way, and I enjoyed seeing them each day. I worked hard and had fun. Though it became increasingly more difficult over time, working outside the home was a break from caregiving and helped me keep a sense of normalcy.
The decision to actually leave was extremely hard. I’d spent countless hours considering all options. My company changed insurance plans and we no longer had private duty nursing covered. That benefit alone under our old plan was equivalent to $24,000 out of our pockets each year. We’d already paid close to $20,000 for home care in just a few months and I couldn’t see us continuing down that path.
Without that benefit it was going to cost almost as much to care for Brian as I made in a year. I made calls, surfed the net, joined groups, researched, I tried everything I could think of but in the end I left my career to be a full time caregiver. That meant taking a gamble with our savings and taking some financial risks. Sadly, this is a typical story when it comes to a disease like ALS. But I’ll vent about that later.
IN THE BEGINNING
Once my mind was finally made up there was a freeing feeling that went along with it. I made the necessary calls, tendered my resignation and that was it. I did it. At first it was nice to just relax hang out with Brian and to just do whatever. That lasted a couple of weeks until the anxiety hit. Very high anxiety! I’d been working a 9 to 5 job for over 20 years. I’m a very ambitious person by nature and I find that being productive is my happy place.
I didn’t know what to do with myself. Plus, it was back to being just me and Brian in our house, as his parents had moved back home. That was an adjustment as well. In order to go out we either have to pay for a nurse or it’s an all day affair to take Brian out. All I can say is thank goodness we live in a world of deliveries! And we have awesome friends that bring us groceries and other things. We rarely leave the house.
When I had a job I knew what needed to be done each day and what my goals were when I was at work. At home my priority was to be a caregiver yet I had nothing else I needed to be doing. After leaving my job that was a really hard adjustment at first. I felt like I needed to be doing something but there was no end goal or project to work on. It was a tough place to be in my head and I continued to feel so anxious. At the same time I knew I didn’t have to figure everything out the first week so I tried to relax and enjoyed being with Brian.
FINDING A ROUTINE
Slowly but surely we started to find a routine that worked. I use the word routine loosely. It was more of Brian and I both finding a routine. Sleep is a big challenge for me. I love my sleep and always have. I was a napper for years. When Brian’s parents were here they would take the night shift and let me sleep. That was a huge help. With them gone it meant I had the night shift too. I won’t lie. It was a real struggle at first.
Brian is in constant need, whether it’s day or night. He likes to stay up much later than I do. I usually go to bed around midnight or 1:00 am. Brian’s a night owl, always has been. He likes to stay up and work on his art while the rest of the world is sleeping so he’ll work until 4:00 or 5:00 in the morning a lot of times. He wakes me hourly to ask for stretching or suction or whatever.
I get up and help him, make sure he’s okay then drift off back to sleep for another hour or so. He’s often in and out of sleep during the night as well. It all just depends on the day but that’s become our typical routine. He wakes me hourly until about 4:00 or so. We both typically sleep quietly until 6:00 or 7:00 which is when I try to get up. Brian will usually sleep at least two more hours.
At first we were sleeping at the same time but that wasn’t leaving any time for me so after a few weeks of trial and error we found this shift that works. Once I get up I usually stretch for a few minutes, get dressed and start working. It’s quiet for at least an hour or so and I can get a lot of writing or other things done. Some days Brian gets up early or sleeps super late and I adjust accordingly.
Like I said, the first few weeks were rough and it was high tension up in my brain. In the beginning Brian and I just hung out. I did some things around the house I’ve been wanting to do. Organized things and rearranged some things. Once that was done I was looking for more. I like projects and to-do lists. I started spending time reading articles and writing different things. It was so refreshing to actually have the time to read and receive information. To learn stuff. At work I had been on auto pilot and it was rare that something there was challenging my creativity, so this was exciting.
The more I read about different things and different ways to earn a living working from home, the more I started thinking about the skills Brian and I have and how we can incorporate what we do into all of that. His art is so amazing and inspiring and I want to share it with the world! I am in love with how he’s able to express himself in such a beautiful way while being trapped in his own body. It continues to blow me away and inspire me daily. His work is so colorful and full of hope. There are dark days and dark pieces but overall his message is an obviously positive one. I believe in Brian’s art and inspiration and I believe in us! We’re both excited to see where we go from here!
SIX MONTHS IN
Here we are, six months from that fork in the road. People have asked me what I do with my days. I try and treat each weekday just as I did when I worked. (Most weekends too. I’m a workaholic as always.) I get up, get dressed, have coffee and get to work. That means spending time working on the Etsy shop, reading articles and blogs, watching videos and learning how to run and continuously improve an e-commerce business. I work on item descriptions, social media posts, orders and everything in between. My goal is to create a business that sustains us financially, makes people happy, and eventually gives back in some way. Baby steps as this is all so new to me!
One might think that not having a job sounds like a wonderful thing but let me tell you a little secret. It’s stressful! I worry all the time about the ‘what ifs’ while also trying to just go with the flow. I do feel truly grateful for all of the knowledge and experience I gained while in the corporate world. I’ve developed a great work ethic and am truly driven to set and accomplish all kinds of goals. I also gained a lot of computer skills over the years and have taught myself Photoshop which is coming in handy. Of course it’s nice to be your own boss but you’ve also got to be very driven to stay on task. I have days where I suffer from shiny object syndrome. (Some of you have seen my videos of my yard squirrel, Oliver. Case in point.)
CAREGIVING IS NOT FOR THE FAINT OF HEART
And then there are days where caregiving outweighs business needs. Most of the time I accept it and go with the flow, yet some days I’m super focused on what I’m doing and get annoyed about having to get up 50 times that day to tend to Brian. (Now that I’m thinking about it I’m going to write about “A Day in the Life” soon.) I can’t help it and try not to seem bothered. Overall he is so chill and doesn’t demand a lot. We both do our thing and enjoy being in the same space together. We ‘talk’, and laugh, and cry together. Some days are hell and that’s just how it is. I do know one thing. I am beyond grateful to be able to be here with Brian.
As a caregiver to other caregivers, this is something to really think about. The cost of care is already so high, and when you add the ventilator it becomes extremely challenging. At some point the cost of care is as much, or more, as your annual salary so working becomes an issue. I’ve read about many caregivers who have had to leave their jobs to provide care. My advice is to consider this early on and try to at least envision a future where you become a stay at home caregiver.
I don’t know that I would have left my job if things had been different. If my insurance had stayed the same I’m guessing we would have hobbled along and walked a different path. But this is where we are and I’m so glad I did it. Not everyone would have that option and I know that. I am beyond grateful for it.
THE BEST OF TIMES, THE WORST OF TIMES
I’m so happy to be here. It’s also a very heavy weight seeing the suffering day in and day out. It’s a lot of work and that’s something to think about as well. This level of caregiving is not for everyone. I’m sure as hell not perfect and some days I don’t shine my brightest but there’s nowhere I’d rather be.
Thanks for coming along.