Taylor-LeighSitting at a coffee shop on a weekday afternoon sure is nice. Not having a schedule or that many responsibilities is nice too. But trying to figure out my next steps after being a family caregiver 24/7? This is a challenge I did not anticipate.
Enter: the Getting My Life Together phase.
The Caregiver Transition
I thought being released of my caregiver duties after moving my grandmother to a healthcare facility would feel relieving, like the world is my oyster. Anything is possible! I have the freedom to leave the house when I want! I can look forward to a future!
…But it’s not. Instead, I find myself overwhelmed with guilt and the possibilities of “what do I do next?”
Privilege & Gratitude
I suppose the paradox of choice might have something to do with it. It is, in fact a privileged place to be – simply having the choice of what I get to do with my life. Although I am getting anxious watching my bank account slowly decrease without anything flowing in at the moment, I am not so much in survival mode that I had to jump right back into the workforce just to put food in my mouth. And for that, I am thankful. I am thankful that I have the support of my mother, who was my co-caregiver and power of attorney for my grandmother, and I am thankful that I have my partner who is able to support me even though I feel guilty for not contributing as much as I’d like to at the moment. Needless to say, my village would never leave me out to dry. I am lucky and thankful to have that village, and the resources that I do.
Grief
I also acknowledge that it is most common for caregivers to transition out of care for another reason-
because their loved one has passed on. While I am not currently experiencing that, grief comes in many forms besides, and even leading up to death.
I really have been experiencing grief for the past few years: the loss of my grandmother as I always knew her, as she now experiences dementia and learns to live in a whole new post-stroke capacity; the grief of knowing how she feels and myself feeling helpless for not being able to heal her or make her happy; and the grief of physically moving her somewhere else without being able to be next to her all the time.
I don’t know what I was thinking this post-caregiver transition would be like, but it is not easy for a number of factors...
Guilt
Like I mentioned, there’s the guilt. I feel like I can and should be continuing to care for my grandmother, especially now that I am doing seemingly nothing. I feel guilty when I visit her every day and she asks me to take her home and complains about how the place is a “dump.” (It’s actually the nicest facility in the area, mind you). I do know that she wasn’t even happy living at my mother’s house while we were caring for her, and I know I am not responsible for healing her and making her happy. Everyone keeps telling me that I need and deserve to move on with my life, especially at my age (28). Easier said than done. Moving on feels weird without my grandma by my side all the time. I just have to except that our relationship looks a little different now, and she is getting the care she deserves, even if she doesn’t accept the fact that she needs it.
Post-Pandemic Society
Additionally, I am jumping back into the “real world” in a post-pandemic society. “Post-pandemic” is used loosely as the virus is still alive and well, but things are totally different. In fact, I am just getting over having covid-19 myself, and that means that I’m not able to visit my grandmother for two weeks. While the world is getting on as normal, our vulnerable populations are still under strict protocols, especially nursing homes.
Back Into the Workforce
As someone who was/ is in the dance industry, the performing arts was hit hard by the pandemic. Us artists have been forced to analyze our relationship to dance/ our art form. For me, trying to re-enter the field feels foreign. Even in my own small city, new leaders are emerging, and businesses are falling and classes come and go. The performing arts world looks completely different than it did a few short years ago. In fact, society as a whole did. Inflation is high, everywhere seems to be short staffed, wage rates are all over the place, and I can make more money working at Wawa than teaching dance at some local studios.
Armed With Caregiving Skills
I feel like I am entering back into the workforce with a totally different array of experience. For a while as a caregiver, I felt like I was falling behind in life. Like I was losing my skills and watching the rest of my peers get ahead, while I stayed behind. But now, with the support of the online caregiving community in particular, I developed a new sense of confidence. In fact, I have been gaining a lot of skills that most of my peers do not in fact have. (Not that it’s a competition).
I have been told countless times that people do not start to think of being a caregiver until their parents are old enough to need care, so usually after their own kids are grown. I haven’t even had kids myself (although I am also transitioning into a stepparent role also, phew)! While being a caregiver for my grandmother, I have been trained by her home health providers and have adopted many other skills from that of occupational therapists, physical therapists, bath aides, medication aides, nurses, speech therapists, personal care aides, entertainer (lol), companion, dementia specialists, aging advocates, EMTs, personal chef, counselor, cosmetologist, mommy (grandma’s word not mine), and more.
When I think back on it, and hype myself up enough, I realize that I have some kind of superpowers. The ones that are priceless, that you can’t trade for anything. The ones that are plated in love. The ones that I developed thanks to one of the most important people in my life- my grandmother.
Caregiver PTSD
Without being busy all the time as a caregiver, I have (possibly too much) time to sit with my feelings. And it’s like all the trauma from my past is being unloaded onto me. Although I am not in survival mode life-wise, I feel like I am in survival mode internally. One particularly challenging emotional day, I decided to quickly google symptoms of post-traumatic stress disorder. I immediately felt a wave of relief sweep over me knowing that I wasn’t going insane, and that caregiver PTSD is in fact a thing. Being hyper vigilant, having a hard time relaxing, insomnia, immense feelings of guilt, on top of other trauma responses like dissociation and shutting down. Yea, it has been a lot.
Getting Back to What I Enjoy
I know they say that having a routine can be very beneficial. And I agree, but I haven’t been able to get into a routine. So instead of being hard on myself, I have things that I do weekly (at least), not in any sort of rigid fashion. And that has seemed to help.
-Running has helped immensely. Here’s how it benefits my mental health!
-Deep guided meditations where all I have to do is lay down and relax. Relaxation is an important factor of healing as we get our bodies out of fight or flight mode!
-Utilizing the neighborhood pool (a benefit of living in an HOA despite my consistent nagging about still living in my hometown).
-Writing. Heeyyyy I’m doing that now!
-Yoga
-Doing things I always said I would do like trying to learn photography and working on my singing.
-Reading
-Dancing. A few opportunities have popped up and I’m so happy to get back into creating!
-Connecting deeply with my partner
-Taking small trips
-Visiting my grandma! (OK so I do that every day)
Things I would like to do/ feel like I should do/ am working on doing:
-Maybe find a new therapist
-Having a regular support group
-Connecting with friends (I feel like I’ve lost quite a few over the course of the pandemic/ my caregiving journey). Maybe I can try finding new ones on Meetup?
-Applying for jobs/ taking ANY step to lead to opportunities and accepting that a job does not define me. As Ella Fitzgerald say, “It aint whatcha do it’s the way thatcha do it.” It is me that brings me to my work, not the work that defines me. People remember the energy that you bring to the table, and the feeling you gave them. It’s time I take the pressure off myself to be climbing some sort of imaginary career ladder. I know that’s not me!!
Moving Forward One Step at a Time
I am healing but I am living at the same time. Some days I feel like life is passing me by and I am wasting it. Some days I feel like it is okay to take my time because we only have this one precious life. As all sorts of spiritual beliefs say – in order to get what we want, we have to feel good on the way to it.
One step at a time. Have fun. Focus on building gratitude as a habit. Remember all the important things that I realized when I was a caregiver.
As I mentioned in my post about making the decision to transition to a nursing home, I will always consider myself to be a caregiver. Just because I am not my grandmother’s primary, around the clock caregiver now, doesn’t mean that I just gave her away to someone else. Never ever. In fact, I miss her so much that sometimes I think about bringing her back home and trying it again. But the reality is, all of the logistics don’t add up. And Grammie being in a healthcare facility is the best choice for all of us involved.
Rather, I have learned that I will always be a caregiver. For my grandmother, for myself, for my future children.
I am not “getting back” to my “normal” life before I was a caregiver. No, the person that I was then, has evolved to who I am now. I am not the same. I am not better. But I am getting there.
