Surrender

Caregiving After Brain Injury: Surrender

To be a caregiver at home for someone who is severely injured is to surrender. You surrender your time, put your ambitions on hold, and surrender many of the simple pleasures that made up your life before you were a caregiver. You also surrender your peace of mind, your good night’s sleep, and any semblance of a routine.

Yes, doctors will all tell you that establishing routines is the route to happiness and good health, but that is sometimes not possible when the person you care for struggles with multiple symptoms. For many, TBI results in disruptive sleep habits that can affect an entire family. I remember spending days and nights in my yoga pants, and only feeling grungy when I had to make a trip to the grocery store and saw other people. Wow, people sure look nice when they wash and comb their hair and put on decent clothes, I thought. Who has time for that?

Caregiving will not be kind to people who fall into resentment easily, and it’s certainly not for people who want to do what they want to do when they want to do it. But there are ways to make life a little easier and more enjoyable—to reclaim a sense of self when you are devoting so much of that self to another—and it involves reclaiming micro routines and snatching time when you can.

Micro-routines are specific activities that make a difference once you build them into your schedule until they become routine. Here are a few examples:

  • Before responding to a call for help from a loved one, inhale deeply and set your mind to patience mode. Patience is my intention.
  • Remind yourself that love is at the heart of caregiving. Love and care.
  • Clean up the small messes instead of complaining. Action helps us focus. Clear the sink of dirty dishes; stack the magazines you don’t have time to read for a later date.
  • Make your shower or bath an indulgence. Smell the soap, linger in the warm water, feel the brush on your scalp.
  • Stretch. Sun salutations are a great way to greet the morning. If you don’t know how to do them, check out YouTube.
  • Lay out some real clothes, something other than pajama or yoga pants and get dressed to feel like part of the world again.
  • Ask someone in your family to give you a five-minute neck rub. Any kind of massage will give instant relief.

Reclaim time:

  • When your loved one has a good day, take advantage if you can. Get out of the house. Go for a short walk. Sit on the deck and breathe.
  • Anytime someone says they want to help, ask that person to take over for you so you can call a friend and go to a movie or grab a cup of coffee for a few hours. Free time creates sanity!

Most people and nearly all the caregivers I know are understanding, helpful, and compassionate, but we can only be that way when our own bodies and souls are fed. We can only expect to surrender so much before feeling isolated and depleted.

The care and feeding of our selves can be the hardest routine to figure out. What are the micro-routines that get you through each day? Perhaps the habits you’ve established might help someone else. Please share your ideas below.

Comments (11)

Rosemary: I can see your pain in your face and your (closed) smile. (Fighting back tears??)

Is this what they warn us about - “CAREGIVER BURNOUT”???

You SURRENDERED: your whole being to facilitate Hugh’s recovery.
You took on the SYSTEM and fought to get every ounce of recovery out of it for Hugh.

You SURRENDERED – FAMILY - Your girls grew up into young women while being “mothered” by surrogates.

You feared Hugh’s passion to “get back on the bike”, (and rightly so) – the bike was the source of the accident that caused his TBI. - BUT eventually you gave in (SURRENDERED) to his wishes. Now he is off enjoying what he can of his former passion and you are left home to worry and prey that he comes home OK.

You SURRENDEED: your own career for Hugh’s recovery. You changed your residence to be able to help Hugh’s aging mother – someone else for you to take care of.

You lived in yoga pants and pajama bottoms – not “real” clothes – YOU SURRENDERED “who you were for who you became”.

My Canadian Dictionary definition of SURRENDER is:
1. Give up (surrender) to the possession or power of another, upon demand or compulsion
2. Give up, resign, or abandon possession of (something) in favor of or for the sake of another, relinquish.
3. Give up or abandon (hope, joy, and comfort)
4. Give (oneself) up to a dominating thing or influence
Syn. Relinquish, resign, abandon

So now WHAT is left for YOU / US YOU ARE NOT ALONE!

Do we have to “pick up the fight with the System” for our own recovery? The battle we have fought on behalf of our loved ones, has wounded us too. Are we suffering from something like PTSD?

Who will advocate for us? ----We need an advocate because we are too tired, confused, hurt, to understand/appreciate just what we need for ourselves, enable us to recover “whatever is left to recover” of our own lives.

Rosemary Rawlins, Caregiver you have been an inspiration to me since 2014, when

I attended a “Workshop” Caregiving for the Caregiver: Enhancing Family Effectiveness after Brain Injury in Hamilton, Ontario Canada.

Jeff Kreutzer, PhD, ABPP from Virginia Commonwealth University Medical Centre was one of the presenters. Among other things, he showed us a video of you and Hugh and told us about Brainling.org. During a “break”- which I chose to sit out, - Dr. Kreutzer came over to the table and we had a very nice ‘personal’ chat about brain injuries. (My husband had a stroke in December 2010.) Dr. Kreutzer assured me that it was a brain injury just as much as a smashed skull. This opened my eyes! I have followed your blogs and prowled through the site for more education about ABI and TBI and their effects on the brain and the survivors’ various behaviours.

The mission now is to work on ourselves
To fill the empty places where we ‘surrendered’ ourselves to care for a loved one
To give our lives our own purpose
Who will help us?
A dedicated reader:
“DAH”

Dear DAH,

Thank you for being such a dedicated reader, and I'm pleased that you had the pleasure of meeting Dr. Kreutzer. I'm a fan of his and all the work he does on behalf of families recovering from TBI. Yes, caregiver burnout is real and so is PTSD for caregivers. Dr. Kreutzer was instrumental in helping me cope with all the emotions I held in during the traumatizing months following Hugh's accident. I received counseling from a few different therapists and highly recommend caregivers going to see a LCSW or neuropsychologist if they can.

I have been fortunate that my relationship with Hugh has remained loving, and his health has remained steady since his recovery. I'm also grateful that he helped me care for both of my parents as they aged, and now I'm helping him care for his mother. When I use the word "surrender" I am using it in a different way than the dictionary suggests. Yes, as caregivers, we give up a lot of our lives; however, in doing so, if we "surrender" as in "accept" what is directly in front of us, we are able to cope with the truth of our lives as they are, not as we wish they could be. So, I'm not bitter or angry about what I have missed in life (Although I was for a few years right after the accident). I wish the accident never happened, but because of it, I've gained many unexpected gifts..insight, relationships with other caregivers and with BrainLine, and my family remains very close. I feel immensely fortunate, especially because I have seen many stories more tragic than my own.

Thank you again for thinking of me, for reading my blog, and for being such an informed caregiver. I hope you are able to move forward feeling understood and supported, and I hope that BrainLine has fulfilled its mission of informing and helping you along the way.
warmest wishes,
Rosemary

Dear Rosemary,

I always remember the phone call that we had early 2015, on my visit to the USA. Your loving, understanding ears to listen to my agony gave me the strength to press on. I was blessed to meeting your daughter and learned the perspective of children raised in a TBI family.

That was 4 years ago, and now entering the 6th year of my husband being a severely TBI caregiver.....the pressured agony has grown tremendously as our sons have entered teenage years and my mom is battling with aging problems now.

I am so exhausted beyond any fixing. I am in and out of depression and worse I have become an emotional eater and gained 30kg the past 6 years.

I am a hopeless woman, a person without hope is living like a zombie.
I can function, partially due to my sense of responsibility towards my family, but I know I can no longer love him. My heart has run out of love and care....no matter what I try to do (yearly sabbatical for 2 weeks, weekly me time, fill myself with work to distract my mind feeling discouraged).

I think I have surrendered my all to the point of exhaustion. I can no longer surrender when I am empty. I am causing harm to myself, I don't think I can sustain this lifestyle any longer.....even now at the age of 43 I feel I am 73.

Anymore word of advice for me my dear friend? I feel I have betrayed him and our marriage. Yet, I know for sure he is not the man that I married, and I am not capable of settling with this new man that inhabits my husband's body yet is nothing similar to him.

He knows only of the basic human needs....food and shelter. He is a man in diapers who acts like an 8-year-old boy sometimes, but most of the time he is empty. This will not change as a recent PAT scan shows his right brain is 85% dead, and his left brain is also bruised in many areas.

There are no facilities in my country to help us. TBI is not well known even among the medical professions here.... so sad and desperate to change the system....but I surrender that now. I give up. I was too naive to think that I could do it when all these just happened....but time woke me up to my new reality and the new normal does not sit well with me at all.

I am so numb to my life now and I know I need to end this before it ends me.
 

Linda, I just found this comment, so my apologies. Yes. I remember our call. I am so sad to hear that you have not found the help, answers, or comfort you need. I am not sure what you may be able to do unless you could find a few helpful friends to fill in so you can have a little time to yourself, even though, I know from experience that sometimes that is not enough when you know what you are returning to. The only thing I can think of if there are no medical options or a safe place he can live apart from you is to seek out others that may be in a similar situation for connection and to help one another. Also, if there is any way you can speak to a professional about your own struggles, I would highly recommend seeking help.
I will keep you in my heart.

Rosemary,

Hope my comments have reached the creator ... !!! I hit the "save" indicator below. Doesn't say "send" but believe it to be "one and the same ... !!!" Hope so ... n fact, "know so!!!"

Rosemary,

Small is large, and large is small ... life is large and life is small ... such is life, at one time or another!!!

Rosemary,

I hope my comment reads smoothly. Forgot to proofread before sent it. Spelling wise, no problem. Grammatically, sometimes a word is missed and the sentence does not "flow" into the next ... know what I mean? I've become better at not skipping a word or two but there are those times. We are all human and did sustain TBI but I've rendered that little incident inconsequential. Feel "just right," so glad recovered this site!!!

Art

Rosemary, Hi,

I'm back ... my computer went through a bit of re-configuration, I guess you could say. Loaded "Windows 10," and computer lost all of the previous info ... crazy, or something like that. Change ... is what it was. A new world, I preferred the old. But, life goes on in whatever context navigated. Adapt, change, you know this better then 99%, if not more ... we make do with what is before us. Actually, Microsoft Edge or some figure of techno slop was configured on this computer. I have a handle on it, pretty much so, now!!!

I found you again by putting in a single letter and seeing what popped up on the computer. I couldn't recall it by name ... maybe in a few years, and then maybe not ... !!!

How is everything progressing? As time goes on, your husband likely is progressing further in the maze we know as TBI. That is one thing magical about this injury ... or then again, is there anything magical about such a debilitating injury such as the one we are both intimately familiar with?

First item wrote down retrieving "online favorite's" was Brain Line. Great article!!! Hugh, yes, how is Hugh progressing? Every day a little something returns ... although Hugh was likely double my age when sustaining TBI. Some good, some bad, but as you know, "just the way it was suppose to be!!!" A path is "our path," acceptance is realized through time. I believe "your time has come forth."

Art

Hi, Art, Hugh is doing very well. He exercises every day and enjoys life. We are closer than ever and that makes us happy and we both wish you the best in your days ahead. Thanks for commenting!
Rosemary

I love how you spelled out some clear ways for us to practice self-care. Thank you!

Beautifully written - wisdom from the heart and experience. Thank you.