Showing posts with label caregiver. Show all posts
Showing posts with label caregiver. Show all posts

Sunday, June 26, 2011

The Banner -- Brain Injury Article

June is Traumatic Brain Injury Awareness Month  
By Rita Friesen

It is a natural progression from ally to advocate. For Jodi Ginter there have been a series of events in her life that have caused her to become involved with survivors of traumatic brain injuries. On a daily basis Jodi faces three very different types of brain injuries. Her son, her husband and her father all come under that broad category. What most of us don’t understand is that brain injuries can be caused by accidents, sports injuries, strokes and whenever the brain is without oxygen for a period of time.
The effects of a brain injury are as varied as the individuals that suffer with them. For some the taste and texture of food changes, dramatically. Old favourite foods now taste repulsive. Smell present differently. And often words become elusive. For some the nouns are like drops of mercury, skittering away when needed. For others it can be verbs, or simply longer words. Most of us also don’t understand the torments of the personal journey of the survivors. It requires an incredible amount of courage and stamina to walk through the routine of a regular day. Going to school, going shopping or even hanging out with friends saps their inner strength and resources. The ultimate goal is to look normal, to fit in. To be accepted. When such huge deposits of coping skills are withdrawn for a public appearance, too often the reserve is empty by the time our loved ones are safely back home. Home is where the negative energy can be dispelled, and is.
Studying the effects of brain injury is enlightening. I had several aha! moments. The effects are often invisible, as are the symptoms of mental health diseases. The public fears the unknown and the unseen. People with brain injuries, and mental health issues, only go outside the home on their good days. So they look normal, but they pay a high emotional price for that. Individuals from both groups have been heard to say that they wish they suffered from cancer, because people understand that.
Jodi’s initial aim was to educate her immediate family about brain injury and the effects. She wanted people to know that when a survivor is out in public they are trying desperately to cope with a barrage of outside senses. They are processing sights and smells and their brain is literally making new maps and tracing new images of ordinary events. That’s hard work. Jodi spent a great deal of time with her son as he recovered from his injury. Knowing him well, she was able to decipher his wants and his dislikes. Unlike the doctors who have the book learning, or nurses that spend short periods with a patient, as a mother Jodi listened and learned from her son. The natural progression from ally to advocate occurred rapidly. With an excellent command of the English language and a commanding mother presence, Jodi got the attention of the professional staff. She was not ‘just a mom’. She was a primary caregiver. Her son lost twenty-five pounds in his initial hospital stay. When food aversions due to a perceived change in taste, texture and smell, caused a loss of appetite, Jodi and the listening staff worked to find food that could be enjoyed.
The roll as advocate has broadened to educator. Jodi was asked to present her journey and it’s lessons to a class of nursing students at ACC. She and her family work with the MBIA, Manitoba Brain Injury Association. The group has chosen an oak leaf as their symbol, the oak tree being recognised for its strength. These oak leaves appear in different colours representing the uniqueness of the survivors. The organization provides a support group, a safe place where people speak the same language.
When asked what one thing She would like people to understand, Jodi replied,’ Please do not assume that everything is fine just because they look fine. There is a hidden picture.’ Survivors constantly fight the image of people with brain injuries being dumb. They fight feeling dumb.
Jodi Holmes Ginter is a remarkable individual. Despite the dramatic twists and turns that life has tossed her way, her faith remains strong. She appreciates deeply the miracles their family has witnessed. Jodi can even appreciate God’s sense of humour. How did he ever figure her to be strong enough to deal with so many things- wife, farming partner, mother of four, daughter and friend – and advocate for three loved ones with brain injuries!
This month is Brain Injury Awareness Month. To gain a better understanding of the issue follow Jodi’s blog. http://visibleangels.blogspot.com

Friday, April 22, 2011

settling in for the ride

This week has been, I think, the busiest, craziest week we have ever had! 
Starting with that Saturday morning early rising and rushing to the hospital, followed by the looooong wait on SUnday morning for the doctor to give us our walking papers. Monday was at home trying to ‘relax’ as I called the school, cadets and family and filled them in with information on what was new. Answering calls from labs, doctor offices and hospitals...trying to make a bit of sense of the new developments and football practice after supper. Searching online for seizure information and research. Tuesday was spent on making 4 bags of raspberry jam (berries were taken out on Friday and were ready to go on Saturday), baking buns (to get a bit ahead on the buns for calving season), then a trip to Brandon for Sam’s ct scan (a 1.5 hour drive for a 3 minute appt @7.30pm!!). We made it back to Neepawa in time for Sam to go to Youth group -- which put us home after 10pm. 
Wednesday was an early morning getting everyone up and ready for school and to the bus. Once everyone was gone Sam and I started our trek to Winnipeg (a 2.5-3 hour drive) to see his pediatrician. 
It was in that appointment that I heard something that I have not heard from a doctor since this new journey began. It was that I, Jodi Ginter, Sam’s mom, his primary caregiver, the WOMAN WHO GAVE BIRTH TO HIM... was right about what I was thinking about his seizures. On Saturday as I sat and watched Sam sleep, I began to think and like a huge wave washing over me! Everything that we have been trying to tell the doctors and other professionals hit me like a brick wall. Joshua telling me that Sam had been thrashing in his sleep, the mornings of extreme tiredness, sore body, loss of short term memory.  The facial spasms, the twitchy left side movements, the blurry or fuzzy vision at times.The irrational irritability... The emotional rollercoaster... all of it. It was my A-HA moment. I was not crazy and I will admit it -- it was not MY failure, it was the medical fields. They would not listen to me. They ignored my concerns and my thots on Sam’s condition and issues.
SIGH! A huge sigh of relief that came over me! 
Then to hear the doctor actually say the words “Sam, I think your mom is right! She is definitely on to something here...” made my day in a way that I don’t know if anyone could ever realize!  Yes there was something more than just ‘sleep issues’ and ‘teendom’ that was at play here!
Thursday was another early rising day and off for the 1.5 hour drive to Brandon (this time tho I had Joshua driving!!!) for a 9am eye appointment. Sam’s eyes have been giving him some fun times. Blacking out vision (temporary blindness), foggy out looks, major blurring in one eye, trouble seeing words both far and near. Our eye doctor is fabulous and did a thorough check on Sam’s eyes and he did another field of vision test for added measure. It turns out that his eyes are still fairly 20/20 with a small change in one eye to far sightedness but not enough that we need to think glasses at this point. (YAY!!)  ANd his field of vision was awesome! This was all great news from one perspective but from another it was frustrating for Sam. This meant it was all brain activity and will continue and isnt going to be ‘fixed’ with glasses. 
We left the eye doctors and headed for our next appointment to the ortho (where we had gotten braces thinking that the ‘sleep issue’ could have been due to his severe over bite that he used to have!). Here Sam was given good news that his braces days are almost over!!! He is wearing one elastic at night now (as long as I can remember to remind him to wear it!) and hopefully by the summer his braces will be off!! I had one very happy boy after that appointment.
We left THAT appointment to head to the doctor about MY stomach issues. She was amazing! After hearing my history with my troubles that followed all the ‘wonderful’ tests I have had to have, she decided to leave well enough alone until a time when it gets worse again and I have cause to see her or take medicine!!! Hallelujah!!! Dont fix what aint broken!! WOOT!  She asked about stress in  my life and after a quick thot of my last 2.5 yrs and a giggle I gave her a very short and sweet version of my ‘stresses’. She sat and listened, her jaw dropped and I got a wonderful compliment from a doctor. She told me “I am a firm believer in that parents KNOW their kids and we need to listen to them! Keep it up!” 
I wont lie... I wanted to hug her! I wanted to record her so I could play it to other doctors in the future! lol 
I finished with the doctor, went for some blood tests then the boys and I headed to the mall for some lunch...
and a phone call came thru...
It was the G.I Unit at the Brandon Hospital and if Sam could come at 3 for his EEG!!! “Yup Yup Yup!!”
At 3pm we were at the hospital and Sam was hooked up to the EEG machine. For the third time that day I was telling Sam’s story and filling the tech in on everything and for the third time that day there was some jaw dropping and looks of amazement at my Sammi. I am so proud of how he handles it all and his answers to things... he makes me  shake my head and my heart burst!
By 4.30 we were done and leaving the hospital and finishing up a few things before we made our way back to Neepawa for cadets. 
That was my week... in a nut shell... now here I sit Friday morning, Sam is still in bed and the house is running as it usually does and here I smile as our new developments and our now new normal is all starting on a day that couldnt be better... 
...Good Friday...
the day when our Lord dies for us. His death is the beginning of a new life for us and His miraculous rise is only a few short days away...
Dennis and Sam had a talk the other morning before we left for Winnipeg and Dennis told Sam to ALWAYS remember when he was in Winnipeg and Someone sat with him on his bed. Dennis told Sam “God was with you all through this and in the hospital, so He isnt going to leave you hanging now”. On our way home that night from Winnipeg, Sam turned to me and said ,”you know mom, I have been thinking about what dad said and he was right. God WAS with me and He WONT let me hang now. He will be with me through this all.”
I wanted to cry... but I didnt, instead I just grabbed Sams hand and said “ you bet He will”
What an amazing kid, who KNOWS he has an amazing God! 

Friday, March 12, 2010

wishing I could take these mitts off...

I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today.  As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!"  now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.

Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND  b.) be going home.

I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?

The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him).  Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with.  Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are  3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).

Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)

 I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...

wishing I could take these mitts off...

I found a link on facebook today from a 'friend' (someone i have never met actually) that is aquainted to me via a TBI. She posted this link to a blog with a great post for today.  As i read the post tears ran down my face when it FINALLY struck me that Dennis and I were not educated on Sam's injury when we left HSC! I realized that yes we knew he had a frontal injury (along with other lobes due to teh bullet travelling thru the brain) but we figured it all out on our own... no doctor (or nurse) told us that we would/could expect this or that to be noticed with Sam. we were not told that there may be personality changes or other issues. We were just smiled at and patted on the back "good job!"  now go home. we have NEVER been told that he had a frontal injury, or any other injury to any other lobes by a doctor. It is evident that there is damage when you look at the CT scans and can see where the bullet fragments are sitting -- but no one ever TOLD US anything else. And to be honest at the time I never even thot to ask... they were the medical professionals, they would tell me what I need to know... right!? Right!? And I was just a bit preoccupied with caring for my Sam and not having a mental breakdown right there in the hospital over the whole thing.

Now as I read about other survivors and caregivers and talk to our TBI co-ordinator at the HSC (she is great and helps us to arrange all our appt.'s into one day if possible or over 2 days) I am seeing how we were left swinging in the breeze with what to expect! We were all just so happy to a.) have Sam with us AND  b.) be going home.

I know that to some people this seems like a silly thing to think about now (18+months after the fact) but it is another one of those things that makes us wonder "are we going to be blind sided by something else soon?" which we have quite a bit in the past. are there things we should be doing as caregivers to help him? Have I missed that important window of 'opportunity' to get those wires that needed to be mended at a certain time? Does knowing the areas (meaning being confirmed by doctors and not what we have pieced together on our own) that were/are damaged help us to know how to help him?

The lady that writes this blog talks about frontal lobe injury affecting senses of humour. Some survivors will find slapstick humour the best to understand-- and that is Sam now (he has recently discovered the 3Stooges) Sam still some what will exhibit his 'old' razor tongued humour but for the most part now he is into the bathroom, slapstick, Keystone cops kind of humour. (Not normally the kind of humour a teen reverts to as they get older) The frontal lobes also is the area that control our emotions-- maybe an explaination why Sam is an extreme roller coaster of emotions! It is a lobe that is responsible for many different functions of the body.
Sam has also ben having issues with his stomach. He has times when his stomach hurts-- physically hurts him, along with a nauseousness to follow. This will last for an hour or 2 then pass... until the next time. He still gets pain in his head near the entry wound area which result in flashing pain and the a radiating pain on the right side of the skull. He has sleepless nights -- but the sleep clinic says there is no need for concern but by just looking at him in the morning you can tell he had a restless night-- part of his face is swollen (again -- no reason for swelling) Foods that he would normally like are now gross, his love of spicy foods is still there but he cant taste the 'hot', chocolate is a major NO NO (tastes like dirt to him).  Lots of different 'little' things and some 'big' things that we have no idea about how to or if to deal with.  Wen we ask it is brushed off OR the most popular past time for medical professionals (or who ever we are to deal with) dont tell us what are SOME OF the possiblities or send us in a direction to seek answers if we have questions (lets not forget we are  3 hours from Winnipeg -- so getting help from one of te specialist there is next to impossible).

Again it is just one of those (not being educated about anything)things that makes you wonder if we even know the whole picture (who ever does...) or even a corner of it! How do you ask questions when you dont know what you are supposed to be watching for? How do we know things are 'normal non-issues' or something we should be concerned with? (is it any wonder I am hesitant to take him to the doctor if I think there is something wrong?!)

 I still feel most days like I am working on that puzzle -- blind folded with mitts on in the dark...