Over the last several weeks I’ve been waking up wondering when and if things will be normal again … and going to bed thinking the same. In times of great distress, I sometimes forget that I am not alone in my struggles. The struggles by nature make us feel alone.
I thought it might be helpful to hear from others in our community. I checked in with some caregivers and survivors, and here is what they expressed regarding recent events:
- Most services have been cancelled and/or pushed back. The lack of physical, recreation, equine, yoga, and music therapies has been one of the greatest challenges.
- It has also been less than ideal conducting appointments via Zoom, Facetime, and Skype with providers. This doesn’t work very well for some survivors, and for others it doesn’t work at all. This increases the angst about making sure everything in terms of physical and overall brain health is in order.
- Missing community outings and visits with family and friends have caused both caregivers and survivors to feel more isolated. One person shared, “As a caregiver who is very active and social, being confined to the house with no daily routine has been challenging. Finding ways to fill my son’s days on my own has also been a challenge. I see him becoming less engaged due to what I'm guessing is boredom and lack of activity in his daily life.”
- There have been severe disappointments around the pandemic, things being shutdown, and the restrictions in place. Some survivors expressed that perhaps now others understand the isolation people living with TBI feel and have felt for years.
- A group that voiced intense isolation were those in care facilities that had closed to the public, including family and friends. They have put pleas out on Facebook reminding people of how lonely they feel. One survivor, who is also blind, shared frustration at the lack of basic connection. This is really heartbreaking.
- A caregiver from Delaware wrote, “The greatest challenge for me has been keeping everyone positive when it's hard for me, as well. We've done a lot of looking on the bright side. I think the best way for people to lend support is to check in from time to time, so one can commiserate and share your struggles.”
- Finally, a mother from North Carolina shared that she not only feels deep concern and worry for her own safety regarding COVID-19, but also for her son. She said she is constantly practicing vigilant precautions, while trying to reassure her son that everything will be okay.
Some of the deeper concerns were depression, increased seizure activity, enhanced mood issues, extreme exhaustion, and amped up caregiver burnout. In spite of all this, it seems a lot of us are pressing into hope.
I’d like to propose some questions I often refer to in my own self-care practice. I hope they may be of help to you. You can answer them in a journal, by talking with a friend, or by responding to this blog. Answer them in the way that feels safe for you. I call this “practicing the pause.”
What I mean by that is checking in with our self — survivor or caregiver — and being open to sitting with the answers. I’ve discovered that taking a moment to really explore our internal landscape or talking with another about basic things helps navigate the difficult situations.
Can we give attention to the following?
- How am I doing? This is a meaningful question to return to when you feel overwhelmed and need reflection. It is healthy to practice self-check-ins.
- Are there activities that currently bring joy and comfort? How can I tap into more of those things?
- Finally, what might I need to take a break from? Social media/the news, etc. There are a lot of things that add to our heavy emotions right now. Mental fatigue is something caregivers and those with brain injury shouldn’t ignore.
There are no straightforward solutions, and they certainly don’t lend themselves to a quick fix. Tapping into resources — like Love Your Brain — that foster resilience and inspire courage is a good place to start.
Is there something that’s helping you find hope and peace? Please let me know in the comments.
This week I was thinking about many, many things, and the name of a friend’s business came to mind. It is called Given to Love. The solution for myself was in that moment, for that day, simple … may I be given to love? The answer was “yes.”
Photo: This is my dear friend, Christy. Her son, Dustin, was Taylor's roommate at Bryn Mawr. Caregiver moms. ♡ Love warriors.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Barbara replied on Permalink
I truly need help and support for and with my 31 year old daughter who was hit in a vehicle by an elderly person & Our car totaled, my daughter knocked unconscious taken to hospital ER in an ambulance. This was Feb 3rd 2020.
I believe. She already suffered from PTSD, extreme anxiety, depression and Some sort of personality disorder. I also care for my 87 year old Veteran Father. I had a serious injury Sept 21st 2019 (4 severed tendons on top of my foot / ankle region) & emergency surgery & 2nd scar revision Surgery March 9th 2020. We are all basically isolated and have no friends or family in our area to help. Is there any organization that can help in any way. Please let me know. My daughters mental state is not good.. and my mental state and anxiety is through the roof...
Nicole replied on Permalink
Barbara, I am just seeing this, months later. I am so sorry. How are YOU? How is your daughter? Have you been able to get support?
Eddie replied on Permalink
Thank you for another thoughtful article, Nicole.
"I sometimes forget that I am not alone in my struggles. The struggles by nature make us feel alone." True for many situations, and certainly for TBI survivors and caregivers. It's something I often find difficult to remember.
Here are some answers from my perspective as a caregiver. As you said, I have no solutions or quick fixes -- just more questions.
How am I doing?
I had to take some time to parse through the many superficial thoughts and feelings that appear every time this question is asked. One of the things I was left with after sorting through it all is something I rarely acknowledge to myself and never to anyone else: I feel emotionally isolated. This is in no way associated with the issues we all face due to the pandemic; it's just the gradual realization I've come to that the partnership, shared emotions, and the fundamental relationship that I used to have with my wife are gone -- or, at best, are very different from what they once were. It's one of the many things I need to accept and move on from, but it seems I'm not ready to let go of the echoes just yet.
Are there activities that currently bring joy and comfort?
Not that I've yet discovered. My most prized moments are spending time on hobbies or games with my kids; being teenagers, the moments they want to spend with Dad now are rare. I have my own collection of hobbies, but they mostly serve as a distraction during what little free time I have between work and caregiving -- I wouldn't say they bring joy or comfort. I do receive a measure of satisfaction when making videos with my wife of her TBI journey; these are short clips intended to help friends and family understand what happened, what challenges she faces now, and how she is doing.
What might I need to take a break from?
Responsibility. Being responsible for everything, all the time, with no break and no one to share that responsibility with is exhausting. Leaning on friends and family can help, but it isn't the same as having a spousal peer-partner. I have tremendous admiration and respect for single caregivers and single parents (and those who are both).
Is there something that helps me find hope and peace?
Each new day brings its own measure of hope -- and with that, a certain peace. I have an eastward commute in the morning; seeing the sunrise every morning is a wonderful reminder of that potential for hope and peace.
nicole replied on Permalink
Eddie, Through tears I read your responses. Thank YOU for your raw courage in sharing. What a privilege it was for me to have a glimpse into your thoughts. Most of all I want to acknowledge the courage and awareness it takes to peel back the layers of stuff, and get real with ourselves. This is so hard. And somedays it feels like too much, other days it feels like we can keep going. I am so sorry. And like you also grateful for the sunrises and often the sunsets. Thinking of you as I type. With admiration. ~ Nicole