Kindred Caregivers

Kindred Caregivers

We lovingly give care to our babies when they are born and we give care to our loved ones at the end of life, but seldom do we expect to be caregivers in between.

Marathon runners train for many months before competing in a race that will test their endurance, strength, and will to go on, but marathon caregivers enter their event with no preparation, unrealistic expectations — and often — with little knowledge of what this long-term event will mean.

Finding a kindred caregiver can make the brain injury journey much easier. One of the most difficult feelings I experienced in the first several months of Hugh’s brain injury was an intense feeling of isolation. A lot of people didn’t know what to say to me, they didn’t understand what brain injury was, and they had no idea how lost I felt or that I was experiencing ambiguous loss, because I was going through the motions of life.

“Are you okay?” people would ask me.

“I’m fine,” I’d answer. “I’m hanging in there.”

What else could I say? The truth would take years to explain.

I don’t blame anyone for this. There is a serious lack of information — and a reluctance to learn about brain injury. Why? Because it’s tragic and stigmatized. The old phrase “brain damage” from my youth was thought to be the worst fate anyone could ever befall. Brain damage was right up there with the other scary words: mental illness, insanity, and retardation. We’ve come a long way in this country when it comes to understanding many diseases, but we have not come far enough to erase the stigma associated with these “brain” words.

People think: This is not happening to me. Thank God! I don’t want to think about it.

When Hugh got hit on his bicycle in 2002, there was no community online to connect with about brain injury — or at least I didn’t know of one. I did turn to the Brain Injury Association and I was grateful to find articles on their site, but I had no friend or family member who could relate to me, to my feelings, to my fears. No one I knew had been through this kind of injury.

I’m happy to report that this is no longer the case. There are many discussion boards, Facebook pages, and Twitter feeds dedicated to TBI, and people are sharing information and encouraging each other online. I’ll admit this: I feel intimately connected to a few women I’ve met on Facebook in the past few years who have been on the same journey as I’ve been on, and there’s a deep understanding we share that’s important for healing.

I’ll be forever grateful to BrainLine for looking at TBI from all sides — from parents taking care of a child or teen with TBI, from a husband’s perspectives or a wife’s perspective, from a sibling perspective, daughter or son perspective, and many clinical perspectives. Because not only is every injury different, but each one is experienced differently depending upon the intimate relationships affected.

Finding that similar person with a similar circumstance, as I did, helps immensely. I call this a “kindred caregiver.” In my case, I’ve met a few women whose husbands were cyclists (or active) and they had teenage children at the time of the injury. I found we had a million things to talk about, and we could boost each other up and give each other advice in a way no one else could.

In fact, just knowing someone else was out there who understood how I felt made me feel instantly better. It’s like having an affair of the heart; you know what the other person has endured, and that alone connects you.

If you are a caregiver for a person with a brain injury, I urge you to seek out your kindred caregiver. You can find this person online — maybe right here! — or at a support group, caregiver forum, or TBI conference.

And don’t be surprised if this new friend becomes a dear friend for life.

Comments (9)

Only other caregivers can understand with endless compassion.
'I'm fine'! How well I know that...but it's what we tend to say, isnt it? I love the thought of a kindred caregiver
Sometimes I feel like there is no one that is going through what I am enduring and I forget to turn around a see my husband. He is the only person that truly understands what this is like. I wish he had someone to talk with, another father that he could share with.
I've learned over the last 3 years that most people don't get it!! Yes people ask how r u but when I truly tell them ,they r like what....wow....if u don't live it u don't get it! I have made a few friends online who do understand! One of these people I found out was from my part of town. We actually got together at a event to help bring awareness to brain injury!
We at the Ontario Brain Injury Association realized the importance of Peer Support, so we now offer a Peer Support Program. visit www.obia.ca for more information

dear Rosemary, 

thank you for your great article...it depicts most of my feelings, about the ambiguous lost is so severe lately....i can't hold my tears just being in places that my husband and i been together....like a restaurant or movie or supermarket.

i know how silly it may seems to people surround me, all the sudden this woman just cry for no obvious reason.

i know i need help...counselor ....therapist to help me "unstuck" , but i am so far away in indonesia, there is no community ...i never heard of other woman caregiver for a TBI husband.....

it is so true that only people who has gone through or going through what i am going through now, can lend a loving ear ....without being judging.....

uninvited comments like : u should be stronger, don't complain, don't say anything negative, you should do better than this....treat my son better etc.

sometimes i just feel like running away from all these.....in Asia, complicated family structure really is daunting me in my journey as a caregiver.

no one to talk to about handling someone who seems to be my husband 10 percent of the time and 90 percent he is not the person that i know. how long would this go on? how to divert myself from negative feelings towards this whole situation? what constructive things to do while waiting for his healing?

how to handle such changes in life? how to be loving towards my sons who are scared of their own dad, one is preteen,11 yo. the other one is turning 9yo.  who will be their father figure in life?

so many questions that i need to find answers to....plus fending all those criticism from the in-laws and his family members, not to me but also my boys and my parents.....arrrgggg...life is so hard!!!

please, if any of you are in indonesia and reading this .....i would love to hear from you, if possible meet up. but any fellow caregivers are welcome, where ever you are.  God bless us all !

This was great and it' supports caregivers.
I've found kindred caregivers with my work travels (daughter of Rosemary and Hugh). I found that after being in close relations with someone who had a brain injury I was able to spot others experiencing the same thing. I make a point to start conversations with both the brain injury survivor and the caregiver- often leading to a meal together, shared tears, advice, stories, and many hugs. Kindred caregivers are closer than you think, don't be afraid to open up a dialog because you never know where it may take you.
I just want to say to the lady in Indonesia that I will be praying for you and your husband and your children. You said, 'God bless us all', and He will. Just trust Him and when you don't feel strong, He will be your strength. I also have a husband with a T.B.I., but his appears really mild to most people. What you wrote really touched my heart. I hope someone nearby contacts you to help you, I wish you all the best.