After Brain Injury: How do YOU survive life

Brain Injury Blog by Jodi Ginter

July 13, 2011

How do YOU do it; survive life after brain injury?

As moms and dads, we tend to worry about what our kids will be like when they grow up. Are we doing a good job now? Will they appreciate things that we do now, later in life? Am I doing this right? I have people ask me all the time “how do you do it!?” My answer is ‘usually with lots of prayer’… but when it comes down to it… I don’t even know if I AM ‘doing it’. Most days I wonder …

These questions are very much in the fore front of my life right now. I have spent so much time with Sam since his accident, in hospitals, appointments with doctors, specialists, orthodontists, etc. , then I do what I can for my dad (who lives in a personal care home), then add into this mix Dennis (my hubby) and both our parents… and then 3 more kids… These are the ones that I worry about the most these days. I try my hardest to spend time with each child doing what they are into or want to do, but sometimes I wonder if I am going to see them on Jerry Springer 15 years from now because they felt I didn’t spent enough time with them, or that they felt I spent more time with Sam. I wonder if they feel like he is the ‘favoured’ kid of the house — which he is to a certain degree (in medical issues anyway) but then do I show them all that they are in their own way?

I have been struggling with this a lot the last few weeks since our ‘new development’ with Sam (seizures). My guilt is that just the week before his first one happened I was thinking that now I could start to spend more time with each of our other children. I have tried to spend time with them each not only as family time and getting involved in the activities that they are in but also some one on one time. I remember thinking to myself earlier in the week “well now that Sam seems to be settling in to where we are going to be with his brain injury, maybe I can start spending more time with the other 3.” I had made some tentative plans in my head for each of them in the coming weeks to do things that are just mom and me stuff (and that is not easy to do with the ages of 17-11 and all totally different personalities and sexes) Then that first Saturday morning when Josh came running to inform us that Sam was having a seizure, it our lives all changed….again.

From that moment our lives were immersed once again with not only Sam and new seizure training for the family but calving season, garden planning and planting, football, cadets and all the other spring activities that fall into your lap when you live in rural Manitoba (flooding fields, basements, fencing, field/crop planning, etc) Any thought I had of spending time with the kids went out the window. I find my time is busy with new appointments and phoning to update various activities of the new medical issue (cadets, football, school, etc).

I know that Josh, Isaac and Hannah all tell me that they understand and that they are all “ok” but still… I have been trying to fit in time for them but my days seem to keep coming up short! Where a 36 hour day some days sounds like the right thing…it would most likely mean I would fill it with 48hours of “life and work” and still be short at the end of the day.

But to find that happy medium…is there such a thing? How do other caregivers find time to not only do what is necessary for their survivor but also for the rest of the people in their life? How and what do they do to carve out a few quiet moments or — dare I say it– a day (even a few hours!!!), to themselves so that they can regroup and recharge?

I have yet to find someone who not only is a caregiver but also has other family members (like kids) to look after. I can’t be the only one out there… please dont tell me that I am the only one out here!
So how do YOU do it?

6 responses to “After Brain Injury: How do YOU survive life”

  1. Katie Williams says:

    Thank you for posting this! I have suffered a traumatic brain injury in October 2010. I am now trying to get through college and it seems like everything is so hard. It is hard for me to keep a positive attitude, and to know that everything will be alright. Your story gives me hope, thank you for that! I feel for you and your family from knowing what a traumatic brain injury is like. Just know that you have plenty of people thinking of you and your family.

  2. Chris says:

    To answer your question, no, you are not alone. When my daughter first suffered her brain injury, my father was mid stages of dementia. During her recovery we as a family all pulled it together. Mom took care of dad most days. I assisted her 5 days a week between rehab appointments. Dad stayed home until the time of his death. It was a beautiful thing to have all the kids helping as he transitioned. During that time, I employed a philosophy of phases. NOTHING lasts forever. If you can keep that in mind, it makes everything easier. We have a tight, supportive family which is really helpful. Most of all, I think, is my prayer life. I say my thank yous morning and night and many times through the day. I also journal to both my girls. My wish is that they will read these once they grow up and see the love I have for them that they may not have felt at the time. Hope this helps!

  3. Renee says:

    Jodi, You are not alone. My son was 18 when he was t-boned and suffered a traumatic brain injury also. While I spent 6 months in the hospital with him, my parents took care of my other 3 children (all younger) and transported them to and from school and the hospital. We lived 3 hours from the hospital. Four years have gone by since the accident and I’m still seeing what a toll the accident and events surrounding it, have left on my kids. My son will be 23 this month. He continues to improve though we have a lot of good weeks and not so good. Now that he is older he has his own place and we have caregivers that are with him 24 hours a day. He has no physical limitations but is not safe to be left alone because of the choices he may make. He lived at home until a year ago. We decided that in his case, we were not helping him to grow up by keeping him at home. He needed independence and to learn not to depend on us. He has done very well though it was hard to let go and let God. It just takes time and lots of patience as you know not to mention lots and lots of prayer. Thoughts and Prayers your way!

  4. I love the idea of a gratitude journal – amidst the stress and worries and pace of the day, we often forget the blessings we all have.

  5. Connie Lewis says:

    Hi Jodi,
    My name is Connie Lewis and I am the mother of a 27 year old daughter who was born severely and profoundly brain injured. I am new to this blog, so I don’t know your story or circumstances.
    My first suggestion to you would be to find a source of respite. I’m from IL and we rank 49th in the nation for programs for people with disabilities/special needs. We do have some respite programs in our state so hopefully you will be able to find one in yours. If you don’t know of any agencies to contact about this, a good place to start would be Sam’s doctors or have them put you in touch with a social worker. Other sources would be the Dept. of Rehabilitation Services. You might look up Dept. of Human Services in your state.
    After you get this in place then you can look at other ways to relieve yourself of overwhelm. I also had volunteers for a period of time. I know of other parents that had help from volunteers, too.
    I have found that having a gratitude journal helps me. If you can take just 2 minutes a day and write down 3 -5 thngs that you are grateful for that day this will help give you more clamness and inner peace. Which in turn will help your overwhelm and stress levels. You don’t have to be grateful for big things. Everyday graces as a breeze on a hot day or a butterfly that made you smile when you saw it. Just taking the time to bring to your attetion that you did have some graces in your day will be calming and will build for you day by day.
    I pray for you and your family. Each family is different but we all have the same feelings and struggles to varying degrees.
    I hope you have found this helpful.
    Have a good night.

  6. Ginger says:

    You have the fullest plate. But we all have someone else to care for. And you have to remmeber to add yourself to that list Jodi. You are on my list to care for, too. Take care of yourself, remember to breathe, and know that they appreciate you so much for what you do. Hang in there girl friend.

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