Caregiving with a Traumatic Brain Injury
9 ways to tell I am a Caregiver:
I don’t send out greeting cards anymore
I am making friends with the homeless guy outside the grocery store where I shop for my elderly parents
My regular hair and makeup style is: ponytail, and none
I know more pharmacists, PSWs, doctors, healthcare aides, and rehabilitation specialists than when I worked as a nurse.
I wake up at 4 am thinking the phone just rang (potentially indicating an emergency), but it’s always a dream.
My dog is bored and overweight
I used to enjoy caffeine, now it’s a survival tool
I have pillows on every piece of furniture in my house in case I need to lie down
I always know what the adaptive device store staff are planning for the weekend and get updates the following week.
Ask anyone who is a Caregiver, and they will understand this list. Now try and imagine Caregiving while living with a brain injury. It’s diabolical. It tests every fiber of your being. They say to never try to save someone else on an airplane before putting on your own oxygen mask first. Well, as a Caregiver with a brain injury, I’ve used up all my oxygen and need more, but it’s not available. The plane is going down.
Brain injury symptoms include lack of empathy, fatigue, problems communicating, lack of exertion tolerance, disorganized organizational skills, and impaired cognitive processing, to name a few, all of which are critical to Caregiving. How am I doing it then? How successful am I as a Caregiver? Well, I’m just doing the best that I can.
At first, I thought to myself, when my parents started to ail, that “I can do this”. Even though I was unable to return to my coveted nursing job after my accident, somehow, I believed I could tackle Caregiving like a replacement job. But quickly I realized my limitations. They came in the form of: a short fuse, high emotionality with leaky brake, impulsive reactions, lack of patience, marital strain, arguing with family members, little flexibility in my thinking, and craving control like oxygen.
I started to think “There is no way I can do this” and “how is it you are screwing up so badly” and “Caregiving should be easier”. But then I found a way to move through. I began seeing elements of my own cognitive issues reflected in my parents’ cognitive decline. I understood what they were going through and was able to relate on that level. I found myself in conversations with them about loss, grief, denial, and dealing with cognitive loss. With time the messages in my head softened and became “you are doing the best you can” and “errors in communication are ok” and “cut yourself some slack”.
I also realized that there may be times when I was not available to able to help, or in an emergency, and that would have to be ok. Feeling like I’m on call 24/7 was exhausting and thinking I was the only solution to all my parents’ problems is not sustainable for my own life. 10 years after my accident I still have all my own rehabilitation appointments to attend, a marriage to cultivate, kids to visit, friends to see, a dog to walk, a life to live. Finding the balance between being there for my parents regularly, but not to the exclusion of my own needs was crucial. This is still the goal and not yet the destination. I’m working on this every day. Perfection is out the window.
With a brain injury, I’m not sure I will ever get to this destination but I’m trying to maximize my own recovery while supporting my family. I knew Caregiving was hard, but with a brain injury it’s like trying to nail Jello to the wall…you want to do well, provide good consistent care, be congruent in all communications, keep your eye on the ball, not miss anything, and keep your own emotions in check. It’s simply not going to happen. All you can do is what you can do.
And I have stopped apologizing for my everyday errors in judgment and brain injury-related behavior and save it for when I am way out of line only. Constantly apologizing for my behavior was eroding my self-esteem. I’m showing up for my family in all my imperfect, damaged, slow, fatigued, messy, ways. That is what is available and who I am.
9 ways to tell I am a Caregiver with a TBI:
I create worst-case scenarios in my head and then work with them as if they are real
Once I help my parents in the morning, I need to sleep for the afternoon
Once I’m tired, dizziness and nausea are close behind
I make assumptions about the motives of others that are wrong about 75% of the time
My anxiety is on overdrive once overwhelmed with responsibility
I let down my rehab therapist every time as she encourages me to exercise in my free time.
Once exhausted, I cannot think my way out of any scenario
As a start, I need complete silence and 10 hours of sleep for several days to recover from any one busy day
My friends hear a lot of complaining from me
The thing that totally vexes our family, is that my husband, along with myself, also has a brain injury, and is also a Caregiver to not only my elderly and fragile parents but his own. This is Caregiving at the next level. It is off the charts. Not only do we have to try to organize ourselves to help others, but we have to organize ourselves for our marriage. And support our adult children—the very definition of the sandwich generation. The obvious analogy is that with brain injuries, our sandwich is thinner on the inside, is missing some key ingredients, and is squeezed more tightly.
And just like people say who have brain injuries, “I wish I had a broken arm so people understand what we are dealing with better”, I would say that is the case with supporting our elderly family members. If it is hospital visits, 911 calls, falls, pacemakers, emergency dentists, or something more obvious, I find it much easier as a Caregiver than dealing in the murkier waters of dementia and cognitive loss. When I am faced with my own parent not remembering obvious details of our family history, having to remind them to do up their jacket before going outside, and dosing out their medications for them, it is much, much harder. We are walking a boundary of encouraging them to do the most that they can independently, but at the same time, weren’t they supposed to be the ones helping me to remember my own zipper? Aren’t they supposed to give me my medication? This role reversal is fascinating. I’m a parent to my children AND my parents now?
What I actually think I’m dealing with here is grief. I’m experiencing the slow burn of loss over time and every one of my parents’ losses, is another loss for me. I’m grieving a loss that is not tangible. That is called ambiguous loss. The parent you have known your whole life is changing with different capabilities and roles right before your eyes. They can’t remember your birthday? Aren’t parents ALWAYS supposed to remember birthdays?? That’s their job!!! What struck me recently was how remarkably similar this process is to my own brain injury (another set of ambiguous losses). These are losses that don’t have closure. They keep going and going, retraumatizing as they go, reliving them over and over, leaving us frozen in our grief. WHOA!!
At least your parent is living, right? Be thankful for that, right? Well, I am. Of course.
It’s just that I was so sorely and completely unprepared to have to tie my parent’s shoes. Or set their alarm clock. And I am a trained nurse! How do you prepare yourself to grieve a loss over and over again, right before your eyes?? Well, there are no easy answers. For my husband and I, we have learned to live with our losses and really work at staying in the moment and enjoying life’s simple pleasures. Expect the unexpected. Know change is the constant. Be kind to ourselves. We realize these are applicable to our own lives as well as in our care for our parents.
We have learned we need to make sure and take time for ourselves when we start feeling overwhelmed. We need to remain silly when we can and not lose our sense of fun (even though the definition of that has changed substantially!). In addition, and ironically, we actually revert back to and often use the wisdom we have gleaned from our families, and this gives us strength.
To best highlight these points, I have summarized them below (and I love lists!):
Family is very important but not more important than yourself/yourselves
It’s important to let people be who they are and not expect to change anyone
Reflect on the values that are exposed as your family elders age. Its ok if some of them don’t fit for you and your family anymore
It’s wonderful to appreciate the traits your family elders have passed on in action as you age and support your family
Marriage is a valuable institution in our family, but not for all members and that’s ok.
Subtle, long-time family habits and tendencies are exposed, and magnify as family member age. This is not always what is expected, or pretty, but fundamental to being aware of and understanding our role in supporting family
The experiences we have had have brought my husband and I closer than ever but also to the deepest depths of emotion than we ever knew possible.
Treating every visit as if it is the last one is exhausting, and may increase emotional load, but is a reality and one that should be actively appreciated.
Anything and everything you know can change in an instant.
And lastly, know that the ugliness you see once you peer under that thin veneer of having it all together (whether it is us or our parents) is GOOD. That’s where learning happens. That’s where the true emotions lie. That is where stuff gets processed. That is where you should lean. Stare directly at that light. You may have spent a lifetime trying to be a good little citizen, but now in the reality of dealing with real-life issues, you realize as that veneer is peeled back, that everyone has some kind of ugliness they are dealing with. As a parent, brain injury survivor, and Caregiver to the elderly, I would argue they are critical to understanding ourselves on a level deeper than we had even imagined.
ABOUT @braininjurywise:
@braininjurywise was a practicing nurse, nurse educator, national nursing accreditation exam writer, and an accomplished triathlete when involved in a car accident that resulted in a brain injury. There were many losses due to the accident including every role listed above. Through perseverance, rehabilitation and support from a fantastic family, @braininjurywise has spent the last 10 years working to redefine goals and purpose. These now include a much slower lifestyle, planning and pacing each day, appreciating the little things in life and regular mediation to slow the mind. Other activities include writing, IG, walking the precious family pet in the woods, and caring for aging family members.
My website, Brain Injury Wise, has lots of tips and tricks for managing a brain injury.
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Survival tips for managing through busy Caregiving days:
I need to recognize and process my feelings. When I care for my parents who have memory challenges, it is like I am losing them in real time, right before my eyes. Recognizing how that relates to my own grief and loss is critical so that I am able to be really kind to myself on challenging days, and recognize I am dealing with a lot.
When I have quiet time, I turn everything off. I sit and enjoy that peace. Learning to appreciate stillness is a gift that I keep giving to myself.
As much as quiet is important, so is engaging with people who you love such as my husband, kids, friends and relatives. Making time for this is critical but also needs to be within my symptom management program.
Really looking deep for what makes you happy is so important. In my previous life I was too busy to know! Now I have found very simple pleasures such as a coffee in the morning, a hot shower at night, sharing a laugh with my husband, and walking my dog are all things I can do that make me truly happy. And I can make time for them when my symptoms are manageable and when there is a break in the demands of helping others.
Lastly I know my limitations. I cannot be everything to everybody all the time with a brain injury. When my brain is fried I have to stop. I have no choice. If I try to continue I will be in unbearable pain, not able to think clearly, drive a car, or speak coherently. That’s the one thing about brain injury. You have no choice. When you are fatigued, you have to stop and literally go to bed. I can be of no use to anyone in that condition.