5 Things Survivors of Brain Injury Should Know about Caregivers
Being a caregiver of a brain injury survivor isn’t easy. Each caregiver’s story is different. Some have experienced some similar and uniquely different things as they deal with the family member who has a brain injury.
Each caregiver’s story will depend on which family member has sustained a brain injury and, from that point on, the other family member(s) take on new positions or new roles in the family. Some of these new roles include:
• Paying the household and survivor’s bills
• Taxi driver
• Walking & talking daily planner
• Case manager
• Housekeeper
• Cook
• Role model
• Financial provider
What are 5 things that we should know about caregivers as they try to fill the above roles for us survivors? Caregivers possibly are:
• Striving to stay positive and proactive throughout this experience
• Feeling a sense of isolation from not only their loved one but other ”friends”
• Feeling like they are “walking on eggshells”
• Wanting to grieve, even though their loved one is beside them
• Feeling like they are flying by the seat of their pants on a regular basis.
There are many “issues” that we survivors deal with everyday. Sometimes, it takes all of our energy to focus on what we are doing and trying to remember things. However, we should also recognize the “issues” felt by our caregivers and try to help them out whenever possible. By doing this, it will only help us, as they try to take care of us in living our “new” life and dealing with our injury. What other things should we survivors know about caregivers? Please feel free to leave a comment.
* Thanks to Rosalyn Fast, caregiver of a survivor of brain injury, for the main points for this article.
Categories: Education
Tags: caregiver brain injury tips for survivors caregiver roles Darcy Keith
A survivor's day can be difficult but we have become accustomed to that (to what ever extent possible). Those that are around us, whether officially our caregiver or not, can experience many challenges - directly related to our actions (or inactions). They deserve and need support on many fronts but often do not receive such.
I thank my family for their continual support and plan to write about my experiences so that others, not affiliated with a TBI, can give recognition to the many people around us who help us face our many challenges.
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Thank you, Michael, for your thoughts! I think it's a great idea to pen your experiences for others who are not affiliated with brain injury. It can only help folks understand what the caregivers and survivors experience. They do need support!
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It is my hope to help others. My 1st TBI was in '83 while I was in college. The ONLY drive I had was to graduate. I did make it thru. I wanted to share my experiences even back then, but college was my focus. Once graduated, finding a job was my focus; then keeping the job; then finding a job; etc.
After a 2nd TBI in '95, I have not been able to work - thus I have the time to write. The injury however, detracted from my skills. Now in 2012, I am much better focussed but many variables are impeding my writing (time commitments and time management).
The goal is to complete the draft THIS year. Support for this project will be a help as I aim to help others with the project.
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Michael if you need help with your book I am more than happy to do whatever you need. You can also submit any insights / a short version of your story / any valuable experience that you have gleaned on my website. This may help you with your writing skills and it will also give you a window out onto the world. You will also be able to start helping others immediately... Anything you need, please do just let me know... Kindest regards, Annie
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Throughout my journey as a caretaker of a survivor of a brain injury son, I have come to know that after 10 years now,I HAVE got to take very good care of myself in order to see the dream accomplished. We are both survivors alone with so many others that God has blessed us to be able to help. It takes heart. But it can be done!
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Thanks for all that you do for your son, Mary! You are correct...taking care of yourself must be a first priority. May God continue to bless you!
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My son's 21st birthday is coming up. His accident was 18 months ago and he still does not walk, talk,show emotion, give eye contact, and still requires a feeding tube. His daily care is overwhelming and I have little time for friends or other interests. The hard part is not knowing if this is all there is, if he will recover and how much he will recover. My husband and my incomes are now less than half of what they were and we still aren't finished with the home modifications. Caring, advocating for him, trying to earn a living, and trying to be there for my other son is so overwhelming that I'm lucky to get anything else done. I miss my son. Yes he's still with us well meaning people like to tell me but he's really not. I feel selfish feeling that way when people say I should just love and accept the way he is and not expect anything else. I'm not sure I can. They say keep hoping. What is hope anyway but wishing for something that may never happen. I grieve everyday.
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While your son may not be able to speak right now, thank you for taking care of him. I can only imagine what rough road you are on. Have you found any on-line caregiver support groups? I know you said you have little time for anything else, but there may be others in the same boat as you that can empathize and offer support to you.
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I've been to a few support groups but I have yet to meet anybody that is in the same boat as me. Most people I've met have loved ones that at least began talking after a year or less. It makes me feel like there is no hope that my son will recover after being in what they call a minimally conscious state for over a year.
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Thank you, Kerri, for sharing this. They are out there...it's just finding folks in the same boat that is the challenge.
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I just wanted to let you know that I too am in a very similar situation and know exactly what you are feeling, but dont give up.... My daughter substained a traumatic brain injury at the age of 19 she to is unable to eat, walk, or talk. She is a tube feed also. It has been 4 and a half years now she is 24 now and at one point I felt there was little hope too. Then 8 months ago she started showing signs of improvements. She now shows emotions. She tracks with her eyes and even follows simple commands such as lifting legs and arms and opening mouth. As her mother I always felt she was still in there but just could not get out. Its always darkest before the dawn....
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How have you survived all that time. I honestly can't imagine. Do you have any advice at all for regaining some of my life back while still being there for my son? Have you always cared for her at home or was she in a facility? Have you tried any new treatments or drugs? Does she get continued therapies?
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Rhonda, you are a true inspiration for others. I publish stories on my website to help others and to give them strength - please take a look at www.mylatentself.co.uk and contact me if you would like to share your story. I am so very grateful to you for understanding that your daughter is still 'in there' somewhere - she is - I promise you she is... I didn't have the pysical disabilities that your daughter has but I do know how it feels to be trapped behind a brain injury... I wanted to share this with you... http://www.youtube.com/watch?v=nLENjsdf0Jw
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I would very much like to share our story, give me a little time however as I have never really told the whole story before, but I would like to for my own own healing as well... Thank you
Rhonda Morgan
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No rush at all Rhonda, I just though, ayou also do, that it may help... Thank you, Annie
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Hi Karri your story is much like my own. My sons accident was July 13, 2009 he turns 21 in June. My son as well does not speak, has no use of his right side, feeding tube & everything else that comes from a severe TBI. I understand fully how you feel. I myself feel guilty for fighting for my sons life so hard only for him to be sentence to a life that must be worse then hell. The worse is when everyone tells me how great of a job I'm doing but yet I feel like I am failing him because there was so much he needed done and I am just to exhausted to complete it all. I'm a single parent and due to the fact that I live in a town that only offers a couple support groups, which have told me my son has not advance enough to where they think I could benefit from their type of support ,I don't know where to turn. I feel like I'm alone in his recovery. I do have 4 other sons who try to help but they are having such a hard time dealing with their baby brothers accident that they are starting to fall apart on me as well. I am now being told that the little support I do get from CMS and his physical therapy are going to end because he is turning 21. I'm sure you know my concerns of them being considered an adults, new doctors, new insurance, what is and is not going to covered any longer to care for them properly. As if we don't have enough to worry about. There needs to be more support offered. Seems like the support is only available to those that are expected to have independent living skills. Some TBI survivors arnt so fortunate. I know due to the fact that I did not to allow the doctors to "pull the plug" I am responsible for my child. But why should my only choices be either do it all on my own or place him in a nursing home. I would just love to be able to enjoy my sons small progress that he fights for so hard for but instead I'm forced to constantly worry if I'm doing all that I can be doing in order to just keep him alive. We have the right to grieve. The child we had was taken from us due to an accident and instead of getting to worry about curfews or chores we have to worry about blood clots, silent aspiration, neuro temps oh and them great shunts and stents, When people tell you not to expect anything else, apparently its not their child they are talking about.
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Hi Melissa,
You know what, I also think there should be more support for people who care for their loved ones in their own homes. I don't know how things work for you where you are but your local support group would. I have a website with a 'campaigns' section on it - you are more than welcome to use this facility to set up your own campaign for change if you want to - just let me know... The site is www.mylatentself.co.uk
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It's frustrating to be sure. He can't get any therapy anymore either because they say he's not progressing. Speech therapy was useless because they tell me they can't do anything if he won't respond. I too wonder if it would be easier to be in a facility rather than at home but we all know they don't get the care they need or deserve. I just am not ready to do that either. Perhaps those of us who truly are in the same boat ought to exchange emails. I am in Colorado.
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Kerri, I want you to know that your son is still there, he is simply swamped beneath the surface of his disabilities. I didn't suffer the physical problems that your son has but I do know how it feels to be shut away behind a brain injury where you can no longer be the person you used to be because you don't have the tools available to you to be able to do so. Your son could possibly have a very high state of awareness and yet not be able to show it. I can 'feel' your despair... I would like to share this with you... I hope that it helps... http://www.youtube.com/watch?v=nLENjsdf0Jw
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Kerri, this may also help you... Sometimes, just knowing that we are not alone, can give us a new boost of strength... http://www.mylatentself.co.uk/our-stories/never-give-up-by-toni/
Does your son not have a caregiver come in to give you any respite? Please keep an eye on me and what I am doing. I am planning on raising money to help with things like home modifications and respite care... If there is anything I can do to help, please contact me...
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Thank you so much Annie. Your words and the work you do for others is amazing. We have been lucky to have a CNA come in to help get Eddie showered and dressed in the mornings. Since my son is completely dependent, they can't give me anybody who isn't a trained CNA and there are limits on that. We can get respite but not in home. We would have to put him in a facility but lack of time to go tour facilities we might be comfortable with if at all is lacking and even if we found one, the guilt of leaving him and taking a vacation to recharge might be worse. We are still waiting for the OT report to go to Medicaid to hopefully help pay for some of our home modifications. We are also shopping for vans with lifts so that I can get out of the house with my son more often but finding an affordable one is tough. I'm also looking around for possible colleges to see if I can find a student who is studying physical therapy that might be willing to come out for an affordable price. I think the hardest part though is the emotional one. I miss his smile and I miss his laugh. I hate to see him miss so many years of his young life. He's worth waiting for though.
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I am a survivor with full-time, around the clock caregivers, and we all live with my parents. In my experience, caregivers, like survivors, need patience. I, early on, expected my mind to be read, and got angry when it wasn't. Every person in contact with a survivor needs patience!
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Karyn, Thank you for your comment. While caregivers need to have patience with us, we need to have patience with them. Many times, they are doing the best they can with what they have, while trying to manage all of the roles listed on the blog post. It's hard sometimes to have patience when you are with someone for 24/7. What we can do is try to do the best we can.
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While I'd like to be a bit more sensitive on the subject, I wasn't blessed with good caregivers, in hindsight, they weren't offered nearly enough info on the healing process continuing for years after your release. In my case my now ex-wife wasn't interested in hearing about the problems I was still running into and wouldn't help persuade our son to help do any of the work around the house or help with yard work. I couldn't drive so had no way to withhold rides for him to his activities. Some friends staged an auction for me and raised a considerable amount of money. Between that cash and SSI and a long term disability policy my employer had carried for me, we really didn't have any money problems. Other old friends kind of drifted away, i would suggest a small BBQ to have people over but would be turned down because it was too much work. Even though I would do the planning and cooking as I had before the TBI. We could entertain her family and friends but it was too much work to have anyone else over. Sorry, but I've been in a whiny mood this week.
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Thank you for your comment, Arnie. I'm sorry that you weren't blessed with good caregivers. My article points out a change in roles that the caregiver has now become, to help us survivors. Some can handle it; some can't.
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My name is Rhonda and my daughter suffered a brain injury in 2007 and is persistent vegetative state. I wanted to reply to your post because like you it was so hard to hold on to hope and want my child when she showed no response to any kind of stimuli. My daughter can not walk, talk, or eat either. Approximately 8 months ago I started taking my daughter to a chiropractor for regular chiropractic adjustments. Progress has been slow but there has been more progress in 8 months than we have seen in 4 and a half years. My daughter is tracking with her eyes now and watching television. She laughs and smiles when things are funny and even cries when things are sad. Movement wise she is now able to follow simple commands like lift your leg or arm or open your mouth. It has opened a whole new world for us. As her mother, I always felt that she was still in there somewhere but that she just could not get out. I continue to take her to for regular adjustments once a week and she is continuing to show progress. It is a horrible feeling to feel like you have lost your child yet they are still right there with you everyday. You and your family will be in my prayers. Rhonda
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Thank you, Rhonda, for posting this and sharing your experience! I'm glad your daughter is showing signs of improvement. We'll be praying for her.
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Thank you, Rhonda, for posting this and sharing your experience! I'm glad your daughter is showing signs of improvement. We'll be praying for her and you.
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Dear Rhonda,
I read your story and have many questions... I truly empathize with your situation. Most professionals in the brain injury treatment community do not use the term "vegetative state" anymore. Hopefully, and I always use Hope, her brain is still functioning.
That said, 4 years is not "too long of a time" for her improvement. It took me over 7 years and I am still working on improvements 21 years later! At present I work with a person who is 5 years out: he is paralyzed, non-verbal, responsive, can "walk with aids and a frame..." He desperately needs speech (as time progresses to aid in cognitive reconstruction of his brain), Occupational therapy and much more physical therapy.
From what you describe, you daughter needs to be under the supervision of a team of specialists such as a Physiatrist, Neurologist, physical therapist(s) and occupational Therapists who specialize in brain injury.
Does she qualify for Medicaid? If she is under 21 (at time of injury) other sources of assistance can be provided.
I would recommend contacting your local chapter of the Brain Injury Association or Alliance:
http://www.biausa.org/
http://wsbia.com/
Chiropractic care can be "good" but the doctor must have an understanding of secondary impact syndrome and other complications. This can be a dangerous approach... more knowledge and information is needed.
Kind Regards,
Glenn Ford
Advocate for People and Families Living with Brain Injury
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Glenn, Thank you for your suggestions and resource listings. Congratulations on your improvement!
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Glenn,
My daughter does see a neurologist who perscibes medication for her seziures and monitors that. She is under medicaid and was only 19 at the time of the accident as for speech therapy and occupational, physical therapy she was discharged from speech therapy with a device called dynovox, a computer that can talk for her all she has to do is look atwhat she wants to say. As for physical and occupational therapy she was discharged because they said they could not justify continuing because she was not making progress
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I discuss the caregivers perspective in my book 'My Latent Self,' There are some excerpts that are relevant to this discussion:- "How we people with our ‘disfigured’ brains appear to others, has relatively little to do with who we are. It seems it is a common perception or belief that we become ‘lost’ to you, and that there appears to be little left which resembles the former people that we were. I can understand this. To those of you on the outside, what emerges after injury is but a hope of a ghost that is barely recognisable as the former person we were. The ‘original’ person is difficult to see beneath the spectrum of our bizarre behaviours." A further excerpt:- "I get that we confuse people. I can totally understand you have no initial idea as to how to relate to us, and I realise you have much to learn in order to be able not only to help us, but also to be able to deal with, and live with us. What we unknowingly ask of you is way beyond the normal call of duty. If brain injury has never cropped up in your life before, then it is inevitable that you will have no experience of dealing with someone who has been brain injured, and that you too will feel lost, confused and frustrated. I can understand the grief, the mourning even, for the apparent loss of the soul you have always so loved. Who is there to assure you? Who is there to train you – the one who becomes the inevitable trainer? How are you best able to learn the new communication skills you will need? Do you even know, or recognise, how our dependency on you requires that the way you have always perceived and judged the way we cognitively function, needs to change? The confusing part is how to separate what is a lack of brain function, from what is not a change in personality." And further: - "I am sure you all know that the changes in behaviour which occur as a result of brain injury are not premeditated; they are accidental implications that arrive like frogs falling from the sky on a clear blue day. For those of you on the outside, when our injuries cause you life changes in ways that do not meet with your previous experiences, you can be easily thrown into an uncertain world of rocky ground, which you tentatively step upon in the fear that what is left underfoot, may also fall away. Life can feel undermined, like the crashing waves of the ocean eating away at the bedrock of your existence, eroding your capabilities and normalities, chewing up everything that was once familiar, and leaving you with an inner chaos that holds no direction. I understand that brain injury does not only alter the lives of those of us who are afflicted, but spreads out like the turbulent ripples on a great lake. We don’t know we are affected; we are certainly oblivious to the fact that you are..."
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Thank you for your comment, Annie. Congratulations on your book - sounds like a good read!
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Yes, I have always had my daughter at home. Time have been rough. There have been time when I too thought I was not going to make it but no I have never thought of putting her in a institution. I have developed health problems of my own because of the stress of it all. How have I made it? Just one day at a time I guess... I just wontlet myself give up hope. I think of all the bad things that could happen to my baby in one of those places and it gives me strength to keep doing it and as for regaining my life I enrolled in college. I take online classes and I have a caregiver that comes in 3 times a week for 3 hours to give me a few hours away from the home. It definately took some getting used to but it is all worth it. As far as trying different drugs as therapy I did let the nuerologist try a few at first but they only seemed to make her have more of those "check out" episodes. now as I said earlier I have found a chiropractor and am trying the totally natural approach and we have had more progress with that than anything. Honestly though, I have rerearched alot on my own and from what I come up with it just takes time... Time for their brains to "rewire" theirselves and come back to us. I have fully accepted that she will never be the same person that shewas befor the accident but I truly believe that she will continue to make progress.
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And to answer you question about therapy. Insurance stopped thearpy services approximately 18 months after accident due to no progress. the only therapy she gets now is what I do in the home myself. I do passive range of motion daily and about 6 months ago she actually started particapating herself. Now she does about 6 of the leg lifts and I do 4 for her, she does about 4 of the arm circles and I do 6 for her. She is more effected in her arms and hands. but they are getting better when she came home she had no use of her arms and hands at all now we just had to have a new seatbelt put on her wheelchair because she learned to undo it.
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Darcy, this list is so very true. I only wish I had had someone to rely on. I have pretty much been on my own since my accident. I had one friend who helped me after my accident when she could, now I still struggle with things like money issues, decisions concerning money etc. and I have no one to help me. I have managed to reteach myself how to cook and now cook for a neighbor twice a week. It has taken a tremendous amount of effort on my part to learn to plan meals, shop,and prepare food without burning, or overcooking it because I forget it is on the stove. I am 3 1/2 years out from my accident and I realize how ill-prepared I was to even face the daily living tasks. A friend who does not live locally, is paying for an aide to come in and help with cleaning and laundry, which is a tremendous help. (because of the physical injuries I sustained) The most important thing to me right now is to keep my brain active. I paint, I volunteer virally for ONE Spirit which works with the Lakota of Pine Ridge, I read sporadically(no attention span)I am taking a course through Great Courses in comparative religion: no tests, no papers, just good lectures at your leisure. Fortunately I do see a psychologist weekly which has helped me get through that lack of family support, helped me deal with the physical pain I experience, and just someone I express all my frustrations to.
My family doesn't want to talk about it, they think I should be healed and just as good as I was 3 1/2 years ago. The only ones that I really keep in touch with are my kids and that is somewhat sporadic. At that time, I hadn't seen my kids in two years(I haven't had a car since 1997)I would have loved to have that list to mail to my kids when I got hurt. I couldn't even remember my friends names. I wonder if I would have know my kids?
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Thanks, Betty, for your comment! Are there any United Way or other non-profit resources that would be able to help you with your financial resources or offer a class? For not overcooking food, have you thought about putting a timer by the stove to go off when the food is done?
It's so important to keep your brain active, and I'm glad you are doing this. Your frustrations are understandable. I'm glad that you have someone to talk to. I'm sorry that you haven't seen your kids in a while. I hope you can soon.
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Hello Betty, You sound so similar to how I was six years ago... I have written a book that may help you - you can actually download it as a 'speaking' version if you do not have narrator facilities on your computer... Your artwork is absolutely incredible, I took a look, I am inspired to save the money up to but one! I run a group on facebook called 'The Inside of Brain Injury' that you are more than welcome to join. You will be able to get continual friendship and support here - there is always someone to talk with, to share with and who will always care... I am organising all kinds of events and ampaigns to raise awareness about how families walk away from people with TBI's because they don't understand what is really going on. You are more than welcome to be a part of anything that we all do Betty, more than welcome... Please feel free to contact me at any time.
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Kerri
This is Rhonda again. I am always available to talk to you anytime you would like. I am including my email in this message if that is ok with the administrator of this blog mrhonda42@yahoo.com
if this is not acceptable I would ask that you advice me how I can pass my email address on to Kerri
thank you Rhonda Morgan
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So many great comments, thoughts, ideas, heartfelt pain and feelings.
Caregivers are very lost too, (flying by the seat of our pants is so true) Everyone is lost and just trying their best to do the right thing. The doctors, rehab, families, support groups are struggling too.
It's been 23 years since my then teenage daughter sustained severe brain injuries in an auto accident. She died and was revived.In my own journey as a caregiver, I made so many mistakes with the greatest intentions. Along the way, I suffered two nervous breakdowns.
What I've learned is that I must take care of myself FIRST and FOREMOST so that I can be 100% not only myself, my daughter, also for my husband and two now grown sons and their families. My focus cannot be forever 100% on my daughter's needs. It serves only her...and no one else.
It is a very difficult and long journey. I wanted to give up and walk away because I lacked the strength and wisdom. My family taught me otherwise. Together we failed so many times, together we we lifted each other up when the other was down.
The journey can be won...because I know for a fact so many before us HAVE succeeded. When we take the time to learn from them we take small steps to our own success. The journey is rocky...and we WILL fail...as long as we get up each time (it may take us awhile to get back up and that's okay) ...we HAVE success.
Along with these super people on this post, I'm here to join hands and help to give others HOPE Beyond Trauma. Together we can move forward!
My book is "HOPE Beyond Trauma...a mother's journey" is the story of our struggles through hell and triumphs about my daughter's rehab and later when my youngest son serves six tours in Iraq and Afghanistan. The struggles soldiers and families face when they return home.
Congratulations! You are doing a fine job here. The people who are participating are on the right track of learning from each other.That's how we move forward.
Janie Smith,
HOPE BEYOND TRAUMA
Founder, Author, Speaker, Trauma Coach
http://www.hopebeyondtrauma.com
janie@hopebeyondtrauma.com
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Hi Janie,
Your story is really moving and I totally agree with you - it takes courage to make a conscious choice to rise up and welcome your purpose in life. I am more than happy to add a link to your website on my own and also to add your book into the recommended reading list. Could you let me have a synopsis or short review and a link to where the book is available from? Also, I publish people's stories on my site to offer inspiration and hope to others. If you would like to write about your and your daughter's journey I am sure this would help others. Also, I have a section called 'Understanding Our Caregivers that I am lokking for people with experience to contribute to - again to help others - and I would be really happy to publish anything that you think may be of help. Thank you for sharing, Annie, www.mylatentself.co.uk
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Hi Annie,
Good to hear from you and know that you are walking on your own path of success after your brain injury. Congratulations! I know this journey is beyond difficult and challenges you daily.
My book summary is on my website at http://www.hopebeyondtrauma.com">http://www.hopebeyondtrauma.com. On the menu will state "book." I have a blog with not only my thoughts, also my daughter's Tanya and my associate John Hatten, both brain injury survivors. That's under the "blog" tab. I have no problem of you taking any of these articles and posting them on your site. I am more than happy to help!
You have a really beautiful website with great information. It takes all of us reaching out to make this world a better place. Thank you for doing your part!
If you have any specific questions or issues you would like me to address I will help in any way I can.
Thank you so much for your comments and looking forward to connecting with you again.
Janie Smith
Founder, Author, Speaker, Trauma Coach
janie@hopebeyondtrauma.com
http://www.hopebeyondtrauma.com">http://www.hopebeyondtrauma.com
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Hi Janie!
Your book is here: -http://www.mylatentself.co.uk/getting-help/books/
Your blog is here: - http://www.mylatentself.co.uk/getting-help/links/
Did I mention the Global Picnic that I am organising to raise awareness of the main BI issues? More information here: - http://www.mylatentself.co.uk/2012/01/the-brain-injury-global-picnic/ and here :- TBI Global Picnic
I hope that you may be able to help us or pass this notice out...
Many thanks for everything,
Annie
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Hi Annie,
Thank you for the assist with my book and blog ...I appreciate it.
The Global Picnic is quite an amazing project. My plate is overflowing right now, so I will not be able to organize a function of this magnitude. I wish you the best on it and will post information about it in my social media.
Thank you for having a great site with awesome information. And putting on this global picnic what a unique idea.
I know you helping a lot of people with your work...helping each other move forward.
Thank you again,
Janie Smith
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Thanks to all of you for sharing on this string - it all sounds so familiar! My son too suffered a TBI in 2006 at age 18, awoke from his coma, survived 8 surgeries over the course of 8 months, was also dependent on a ventilator, feeding tube, etc. but was discharged to us at Christmas 2006.
While he is still hemi-plegic, mostly non-verbal, and totally dependent on us for his ADL's he (and we) have worked very hard for every inch of improvement. Today he is responsive, and luckily is very driven and positive. It's encouraging to hear about continued progress even after 20 years. We were told after one year that he had plateaued and that he could not understand a word that was said to him..it was all in the tone and inflection of our voices. Which couldn't be further from the truth. He was (and is) 'in there' and almost 6 years out he makes baby steps (forward) every day.
Rhonda, Kerri, Melissa...my only advice (for what it's worth) is to never give up!! It's gruelling and exhausting to point of being debilitating sometimes but it's worth it. As you know all too well, besides working multiple jobs to make ends meet, arranging for home renovations, obtaining equipment, fighting for therapies/help/support/benefits is a full time job all in itself. But, at least in my experience, it does (and hopefully will continue to) get better. It has to, right?
Darcy, thank you for this topic and your encouragement. Mary, your advice is something I haven't quite figured out yet...but I know it's imperative and hopefully I can put it into practice. Annie, I have requested to join your FB group and will go to your website next!
I would also like to invite any of you to visit our website and post on our FB page "TBI Phoenix-Fund". Our mission is to try and raise awareness for all of those parents who don't have a clue about the dangers of concussion/TBI - we certainly had no idea before we were living it every day!!
Be Well, Dave.
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Annie, have you established a date for this picnic? Can you email me some additional information at info@phoenix-fund.org ?
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It will be Saturday 30th June (and other nearby days for the exceptions) ..
http://www.mylatentself.co.uk/2012/01/the-brain-injury-global-picnic/
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Hi Dave,
I seems that we are sat in the same boat! I am emailing you as you asked... Thank you so much for your interest.
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Just some other thoughts.....
Caregivers are backstage working to help the star performers – the people who have sustained a traumatic brain injury – shine. The caregiver role isn’t usually one expects or trains for but rather a role that one unwittingly steps into right after an accident happens often on a journey to where or for how long?
Each person’s journey / story is different. We have experienced some similar and uniquely different things as we deal with the family member who has a brain injury.
Each person’s story will depend on which family member has sustained a brain injury and from that point on the other family member(s) jockey for new positions or new roles in the family.
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