Lessons Learned About Being a Caregiver
Updated: May 22, 2020
I was preparing for this pandemic. Maybe not completely with food and such, but with the pure dedication to changing and being adaptable to uprooting situations. I am about to rip off a sensitive and hidden bandage that I have been keeping to myself and a select few. I hope my shared experience can assist you on your healing journey.
Almost 4 years ago my life (and my husband's as it was his direct experience) shifted drastically. We had just bought our house less than a year after marriage and I was teaching and dancing, he was working and we were gardening, getting the whole routine down. Life seemed easy and the future was boundless.
Then, one Wednesday in May I came home from dancing and teaching in Marin all day to find my husband in bed. His body was twitching and shaking (turns out it's called a grand mal/tonic-clonic seizure) and the only experience I have to this type of behavior is seeing folks on drugs. But my husband doesn't do intense psychotropic drugs that take you into an alternate universe. I waited to see if he would wake up or communicate with me; I thought maybe in the morning he would wake up, but I heard a familiar voice in my head and heart saying to call 911.
About a week later after going from emergency room to ICU to surgery back to ICU we learned there was a cancerous tumor on his right pre-frontal cortex (part of your brain that is the boss and makes decisions; what makes us "modern day humans").
So the journey continued with a drastic lifestyle shift. In times of trauma a lot of stuff gets shifted around so you can process what is happening. This could be short-term memory loss, brain fog, mood swings, lack of sleep, sleeping over recommended 8 hours, etc. For me I went even deeper in my commitment to my spiritual practice (sometimes the opposite can happen), I used cleaning as a way to process and have some order in my life, and I studied up on everything East, West, North, South, Cosmos and Middle-Earth to find alternative ways to support my husband's healing journey, and truth be told, my journey as well.
When someone becomes becomes a caregiver, the trauma that has occurred to a loved one is not your own, but can easily be absorbed by you as you are there side by side with the person who experienced it. That is called secondary trauma; it didn't happen to you specifically but you are experiencing the same symptoms as if it did happen to you. When caregivers, teachers, and/or parents burnout this is called compassion fatigue. It's all related and it all can take it's toll on your mental and physical well-being. By getting run down you are more likely to get sick or injured more frequently including increased brain fog. When your stress hormones are going all of the time the upstairs pharmacy will eventually run out and your whole system gets out of balance. Two main stress hormones are cortisol and adrenaline. When they are going non-stop, because the body doesn't recognize stress and trauma as separate, other hormones like serotonin (the sleep hormone) will try to shut your the body down to find balance.
So my life was filled with trauma, learning about it and seeing/experiencing it, and trying to heal from it and yoga asana (postures) wasn't completely helping. I felt like I was skimming over the surface of my trauma. Also during this time my past trauma was triggered leading me to fall into old habits that were not beneficial for communication. I received an email from a TRE teacher about the TRE training; if you've been reading my blog you might remember how this all came about. I learned so much during my time in training. I also continued to heal alongside many women who were healing. Side note: with healing there is no end game. It is a constant journey of finding what works and what doesn't to feel whole again.
I committed to healing along with my husband. I had to find balance of being a working woman and a caregiver at the same time working through all of this emotional, trauma, stressful stuff.
So what did I learn?
1. You have to put your oxygen mask on first.
One of the ICU nurses suggested that I go home and sleep in my own bed so I could take care of myself. My gut reaction was not to since I didn't want to leave him in case something happened or the chart wasn't read correctly. No offense, but nurses already have major caseloads without the COVID pandemic. I also realized that my husband needed me emotionally and spiritually while in the hospital, because he was confused. So I reluctantly left and came back before the next nurse shift.
2. Self-care is not always a spa treatment
Self-care is the ability to care for the self by listening to the inner cues. Cleaning is self-care, but so is crying and sleeping in or having someone else make food for you. Gentle movement can also be a form of self-care as you are able to put your emotions in motion (I did not make up this phrase, it was a part of my Trauma trainings). In that same training above we talked a lot about self-care and the thin line of bypassing it or using substances to instead of processing what was happening. Self-care is whatever you deem is supportive to you that comes authentically from within and will feed your soul.
3. Community-care is just as important, if not more important, to the healing journey.
I was raised in a lineage of women who didn't ask for help as it showed a sign of weakness. But, unfortunately, that is deeply harmful conditioning. I am still working to change. Community-care isn't always asking for help, it's also folks stepping in to simply hold you when you need to be seen--crying, laughing, screaming, or venting. Community-care is apart of our ancestral DNA that we must reclaim. Also when you find a community of folks who are going through very similar things as you it builds everyone's empathy and you do not feel so alone. For me in the beginning this was not just my friends and family, but also a caregivers support group and now therapy.
4. When to say No and when to say Yes.
As a dancer I was raised to say yes to everything. Even if you didn't want to audition for this or do that step again. Just say yes and please the directors or teachers. When I became a caregiver I had to say no. I had to say no to my dancing jobs because I couldn't leave my husband as he suffered from seizures due to the whole brain trauma of brain surgery. I had to say no to extra work especially if it was energy draining work. Saying no can be a superpower of protection; sometimes it can also be a shield preventing joy. Only you will know when to say Yes or No to things. I also want to recognize that when folks ask for help and do not receive it, either at all or not in the way they expected, it is difficult to keep asking for help. Find folks whom you trust and be open about this with them. It will help you stay committed to connection and receiving the support you need.
5. The healing and the work is a marathon, not a sprint.
Those living with a chronic illness or different abilities know that the sudden shift of being a caregiver doesn't require an overnight adjustment into this new life. It's an ebb and flow of emotions, new experiences, and ever changing thoughts, ideas and opinions. Practicing small things everyday like making the bed, getting out of the bed, brushing teeth, drinking water, telling yourself affirmations can be of benefit for the long journey ahead.
These are just a few things I have learned and continue to practice to this day. In case you are wondering my role as a caregiver has reduced in the past 2 years as my husband's condition and situation has been stable (no change). Which is the best outcome for the diagnosis. Our lives have been forever changed and we can only continue to move together with what we have learned and continue to support each other. This is why I do this work. I have lived through it and continue to live with it. As the memories become fainter, the imprint is still there. We can only do the best we can. I hope these suggestions help during your time in quarantine, or in a traumatic situation.
If you are a caregiver and are needing extra support during this time of COVID please ask for help:
~Here is a hotline specifically for caregivers: https://caregiveraction.org/
~Here is a list of resources for different kinds of caregivers: https://www.caregiving.org/resources/
~I also am currently teaching private TRE classes on a sliding scale basis.