Episode 7: Caregiver burnout
I intended to talk about this subject once our situation improved, but unfortunately, that day has yet to come. I figured that this post might have a greater impact if it could come from a place of reflection, but the universe had something else in mind for us. As we continue to struggle through a seemingly endless journey of exhaustion, chaos, and heartache, I often find myself clinging to my last shreds of sanity. Some days are easier than others, but lately, the good days have been less frequent. Don’t get me wrong, amongst the bad days there are still plenty of beautiful moments, but the compounded stress and sleep deprivation have taken a toll on my ability to function normally. I feel as if I have become swept up in a fog of confusion, and in a small way, a part of me has become lost along the way. I know in my heart, that with enough respite I will find myself again. Until then, I will do my best to hold myself together. It’s a rather sobering feeling when you realize that you barely recognize the person you have become…
June 22nd, 2021
This has been one of the most difficult episodes to write so far. Since I began writing it approximately a month ago, our situation has changed, and as I write this now, our situation continues to evolve. It might be upsetting for some people to read this, but I feel that it is important for me to be completely candid about what has been going on with us lately. Caregiver burnout is another subject from my list of things that I thought I would be immune to (which I have come to discover is not the case). My experience with caregiver burnout began after Olivia was born, but I didn't find it overwhelming until our nursing situation had dwindled. After 3 intense years of living with ongoing stress due to caring for a child with complex physical, mental, and medical needs, my life had become perfectly balanced like a towering pile of trash waiting to be taken out. Much like that pile of trash, my life could easily come crashing down if the balance was offset (and that is exactly what happened). As our nursing situation unravelled, so did the delicate balance that was once our life. After a series of unfortunate events that began in early 2020, and continued through to June of this year, our team had been reduced from 3 nurses down to 1 very part-time nurse. With every fibre of my being, I fought to hold it all together. As time passed, I found myself working harder to keep a positive mental attitude (mostly for Olivia’s sake). I went from being incredibly patient, optimistic, and calm to having a short fuse, intense moments of anxiety, pessimism, and crying randomly (and sometimes irrationally). When I started writing the first paragraph, I was dangerously close to my breaking point. I had become an ugly version of myself both inside and out. My hygiene and self-care routines had also taken a back seat to Olivia’s extensive list of needs. Without adequate help, I was forced to neglect my most basic needs so that I could take care of hers. I wish I could say that my sacrifice helped to provide her with the level of care that she deserved… But that wasn’t the case (it was mediocre at best). I was beginning to feel victimized by a system that was intended to help people. I felt lost, alone, powerless and vulnerable. We came close to adding more nurses to our team during that time, but at the last minute, each new applicant would disappear quicker than they arrived, and we would find ourselves back at square one. I was actually starting to feel discouraged, and slightly jaded at the thought that things might actually work out. I hadn’t given up hope, but I also wasn’t holding my breath that we would find someone before our last remaining nurse took her maternity leave in August. I was starting to prepare myself for the mental marathon that I had assumed was coming my way.
June 5th, 2021
Amongst our struggles was a ray of hope. Around the same time that I started to write this post, we brought on another new nurse. As you may notice, this post begins rather pessimistically, even though we had just hired a new nurse. At the time, I was afraid to feel hopeful because of how poorly our previous attempts to acquire help had gone. Although our situation has improved slightly since then, I feel that what I wrote a month ago was a fair representation of what we were (and still are) going through. That is why I chose to share it with you. As it stands, we now have two awesome nurses, but we’re not out of the woods yet. After we finally acquire all the help we need, we will then need to fight to prove to Nursing Support Services (NSS) that we actually need the help (otherwise they will cut our hours.. again).
May 30th, 2021
Since the first day with our new nurse (which was almost 3 weeks ago), the dust of our chaos has begun to settle. I finally feel like I can take care of myself again. Even though I’m excited to have more help, a part of me is still afraid that things will fall apart and result in us being completely helpless. I feel like I’ve barely scraped the surface of the effect caregiver burnout has had on us. It’s an ongoing struggle that we hope to overcome one day, but we can’t do it alone. Hopefully I have been able to effectively share a glimpse of how damaging caregiver burnout has been for us. It’s a complicated subject, and I know that we’re not alone in our suffering. If you can relate to what we’re going through, please know that you are not alone. Fight for the help that you know you deserve, and reach out to those whom you love if your feeling overwhelmed. Hang in there, and remember that after a storm comes a calm.
