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Welcome to My Caregiving Blog

Comments [17]

January 3, 2013

Welcome to My Caregiving Blog

The Rawlins family

I never planned to be a caregiver. I don’t think many people do.

I used to be human a resources professional, a small business owner, a busy wife, and a mother of two. Then everything changed.

My caregiving experience started on April 13, 2002 when a car struck my husband as he rode his bicycle home from an afternoon cycling workout. His severe traumatic brain injury not only changed our lives in the moment, it changed the course of our lives forever.

Caregiving for a loved one with TBI can be difficult for the caregiver at best, and detrimental at worst. Shifting roles, excessive stress, uncertainty, and financial strain are only a few of the challenges caregivers face, all while dealing with ambiguous loss and constant exhaustion. And yet, it is the mystery of our human condition, that amid all this turmoil, we still find moments of beauty and progress, of hope and joy.


After Hugh’s accident, I wrote my way out of heartache to find meaning. With reflection, came growth, peace, and a commitment to help other caregivers cope through shared experience, hope, and healing.

This blog is dedicated to caregivers — and to the loved ones who let us care for them, for their fortitude and the life lessons they teach us.

Comments [17]

My thirty five year old daughter was in a car accident over a decade ago and while the physical scares have healed she is a mess. My wife and I noticed a behavior change immediately and hardly recognized her as the same person. I have tried to identify her symptoms with other P.C.S. victims so I could know what to expect but the only thing I can conclude is that there is no mold. While some of the symptoms have passed she still retains many emotional and behavioral problems. She has pushed her whole family aside but insist we abandoned her. Incidents in the past while having a kernel of truth are embellished beyond belief and filled in with imaginary details that never happened that she truly believes. For a decade her mother and I watched her children, took them to school, picked them up from school, babysit so she could work or have a night out with her husband and on and on. We have done more for her than the rest of our children combined by a factor of at least 20 times. Her complaint? We were never there for her. If you get on the wrong side of her she is the most hateful of persons and tries to hurt you where she believes you are the most vulnerable. I would be interested if there is anyone out there that has  experienced something similar to this so long after the T.B.I.?    

Oct 1st, 2015 11:53am

I forgot to add that my husband also suffered a stroke after his aneurysm clipping.

Aug 19th, 2015 12:02am

I am so Happy to .find this place. Our whole life has changed since February 2014. We are now 46 years Old. My husband also had a ruptured aneurysm. It took 2 weeks to get him to the er. They transferred him immediately to a larger hospital and did surgery to clip his aneurysm. Two years prior he had an AAA. Abdominal Aortic Repair... Of his first aneurysm. Since then, he had bee. Diagnosed with 7 more in his body. I don't know how much more I can handle. My 92 year old great uncle also lives with us. I am so stressed. My husband and uncle have recently started going to an adult daycare center 3 days a week. That really has helped. There is nobody Who can or will understand. My husband's family doesn't help, but have started being very judgemental of me. My husband finally got his disability which 130$ goes to his 11 year old son for Child Support. So we are living on 600 $ per month. I can't work because my husband requires 24 /7 care. He can never be left alone. I am his guardian.

Aug 18th, 2015 11:54pm

My husband suffered a ruptured brain aneurysm Dec 2013. He just stood up that morning, felt sick and a horrible pain in his head. It took me over an hour to convince him to go to er. He then took a shower and got in the car and walked into the hospital. They immediately transferred him to a larger hospital. He had surgery to clip it. It took 3 times longer than expected because of where it was located. A week later 2 coils had to be used to seal it as it was still leaking. Miraculously he does not have any physical disabilities. He does have short term memory loss. Today he might not remember what we did yesterday. Tomorrow he may remember though. Sometimes it may be so short that he can't remember 15 minutes ago. He just turned 50. We have 2 girls 13 and 16. It is so difficult dealing with this. People say "at least he's here", "I forgot things too", "he looks so good". They just don't understand. He worries, doesn't sleep well, asks the same question over and over, says inappropriate things sometimes, is needy, gets frustrated, doesn't want to go places, can't make decisions, has no problem solving skills. This is not the person I married 25 years ago. We own a small business and are together 24 hours are day. Some days I just want to get in my car and drive away. I spent last year expecting things to get better. This year I am trying to accept that this is just how it's going to be. It's not going to get any better. There hasnt been any memory improvement in over 6 months. I will need to make hard decisions this year about our mowing business. We always made decisions together, but he can't do that now. Thank you for letting me post to your board. I feel so alone and overwhelmed sometimes.

Feb 2nd, 2015 9:57am

Hello  All!! Just need to tell everyone that reading your comments helps me tonight as I am having trouble with my son not listening to me anymore, when I try to do my best for him and have. That is my struggle at this time in my life, He tries so hard to be accepted by others, he is a follower and has so much trouble with wisdom skills, to know who is a user and abuser and who is a good human being who cares, I have worried for many years now when he went out with friends if he was to nice how they would react to him as people can not see his injury,  and it did not take long! People are not as friendly as they use to be and if he shows love or happy emotion he is shunned for it, yes a sad world we live in today, I told him people do not like anyone putting an arm around someone  anymore, as people place themselves in one own box, which is know as ones space. Now it can works for some if you are famous, important figure, rich or etc. again sad world we live in, I myself taught him values and manners and to love, and that he has mastered but at a high expense to himself, where as  folks think he is different and do not want him as a friend, and he does not smoke, do drugs, or drink, he did smoke and drink before but conquered the smoking, and drinking was out as he started taking seizures after twenty three years. Coming out of a 22 day coma at age 7 his doctor told him he could land back in one,  so no more alcohol ever!!. He said the seizures were caused from alcohol not working with scar tissue. So I have to be very thankful he such a great person and strong willed, but in saying that when someone makes fun of him, which happens a lot or makes promises to him and not keep them, big ones that get him so excited and then just forget about him it breaks my heart over and over. They talk behind his back and etc. Why do they do this??? Is this just the beast in nature, or evil against good?? I use to stand up for him when he was younger and then I had to loosen the strings and take him out of that glass bottle so he could face this world head on and I had to see what would happen. So far I am not impressed, older folks who know better make fun of him as he can not think fast with comebacks as anyone could, most of them on drugs I think which makes them quicker thinkers and have no patients for someone who can not keep up, losers I call them! but this is wrong of me to say, as they are also just trying to find their place in this messed up world. My son is now 33 and he still comes to me when someone mocks him, bullies him etc., and every time he does it upset's me to know end, and my hands are tied now and if I said anything to them it would make him a mommy boy. I tell him to stay away from negative people, even if he only goes to volunteer at our local legion or go to a dance they may have as he is lonely, and boarded and tries so hard to fit in, and he is loved by many as one of the sweetest guys around, but if he messes up something by a simple mistake then they jump on him, for an example he orders a water or pop instead of alcohol and is told he is cheep and hard on the bar tab as he does not drink, so if he drank and gambled then he would be excepted, what happened to our Royal Legions?? He volunteers for God sake!! He is told he is gay which he is not, etc. etc. picked on all the time by elders who are suppose to be in charge and be mentors, say nothing but join in with the bullies, if not outside smoking dope with them, so he will come home all upset again and then he will forgive and forget and it starts all over again this is very hard on me to watch and is so upsetting, all I see is he is so lonely for friends its just so sad, see we live in a small village and not much here for him, How he is dealing with this lately is he will come home and post his pomes over his face book just to feel better. His work is wonderful and that is how he would deal with rejection in earlier years by writing about it, taking bad things and turning into good things. In relationships girls have used him and then dumped him. Heartbreaking again, but better than him having children and have this happen to him then, so I am thankful for that. I love my son to the moon and back and I am very proud of him for who he is and understand what a brain injury does to someone as lived it for over 26 years. Believe me I hear all of your comments and they so relate to me and I have had hard times also, struggling just to survive no help, no family, and no husband. I worry every day what will become of my son if I die,  as I am now in my sixties and on borrowed time as they say, I pray every night that he will find a caring young women who can respect his disability and love him for who he is an old soul with a big heart!! So this is just a touch of my life, but what kept me strong all those years was that someone else always has it worse off than me.!! My biggest fight now is the system and how corrupt, heartless and cruel this planet has become, its in such a shameful state!!  

Jan 25th, 2015 9:19pm

My son has a TBI he is 4 and a half weeks out from the accident,  and will be coming home from inpatient rehabilation in just 2 to  more weeks. I feel  is to early.I'm so worried how he is going to do. He is still confused and very unsteady.  I am worried that even with  bed alarms I will not be able  to prevent  him   from falling.  I worry about everything.  He has frontal lobe damage. I need advice on how to begin  here at home. Please help.

Jul 23rd, 2014 8:26am

Hello, March 16th...I have not run into that problem since Hugh is back to work and has been for some time. I do know a family struggling with this same issue. I'll have to look into this more. Sending best wishes and gratitude for the amazing work you do every day! Rosemary

Mar 19th, 2013 7:55pm

Dear Rosemary, I am excited about your blog, and have just heard about your book through Brainline.org. Have you run into the brick wall that the ACBIS test is not open to caregivers / family members who work for programs in which the survivor is the employer? In our state, I believe the program is called Client Directed Services. Even though many direct care personnel have earned 500 hours of paid hours, they are technically not under supervision of a licensed professional, since the supervisor is the tbi survivor. Thus, further training about brain injury is not open to them. What are your thoughts? Sincerely, Mother and caregiver of a tbi survivor for almost 15 years and employee within a team member of personal assistants (term I prefer) / aides / attendants (term I hate) for almost 5 years.

Mar 16th, 2013 10:50am

So excited for your Rosemary! This new blog is another wonderful way you are able to inspire and inform so many other care-givers who are going through what you have. Thanks for bringing your light and life to others!

Feb 10th, 2013 1:39pm

Your blog is amazing, as is your book. You are such an inspiration to all of us. You are the embodiment of love and dedication. The world would be such a better place if we could all be Rosemarys.

Feb 10th, 2013 9:46am

The strength of caregivers who strive every day from a place of love and compassion with very little help blows me away. Thank you for sharing your stories. It's my hope that by sharing these stories, we can raise awareness, funds, and services so no one falls through the cracks anymore. Dream big. Love strong.

Feb 10th, 2013 8:42am

I have been totatly disabled for several years now. Iam wheelchair bound,legally blind and loss of hearing in one ear. I agree, the systems have failed me too miserably. And I was a Social Worker for 30 years helping others.I can't even get any transportation. RIPTA's Flex not service my area. Because I receive a work diability check it puts me slightly over the limit for State Medicaid and many other services.Last year I spent out of pocket after my insurance paid their part, almost $8000. One bottle of my insullin when I'm in the Medicare Gap (around March every year),is $600 a bottle for only one month. Support groups only tend to end up piss n moan sessions which I can't handle.I could go on about what I am required to pay just to survive. Thanks for the opportunity to air my fellings. My poor Caregiver struggles on how to help suppoprt me. Take care

Feb 8th, 2013 1:14am

Hi- I am above all in my life, my son\'s caregiver. He has Chronic Traumatic Encephalopothy (CTE),permanent frontal lobe damage, multiple concussive syndrome- you get the picture. The famous athletes who have this disease are committing suicide at growing rates, which my son sees and has raised incredible awareness of this disease in recent years. We\'ve been dealing with this for 9 yrs- 27 concussions ago, our life was different. I don\'t have spousal support. It became too hard early on for his dad and sister, so I\'m his advocate. Many surgeries, procedures, doctors around the country, alternative treatements, traditional treatments, knowing research isn\'t there with a cure- it\'s all very exhausting. I have family, friends and thank goodness, a job where I am supported to be the best caregiver I can be but it is absolutely exhausting. His depression is so hard to fight. When he has tried to commit suicide twice in the past 1.5 years and I have spent all I have supporting him, work 2-3 jobs and do all I can each day to talk to him when he says \"it isn\'t a matter of IF I will commit suicide, it\'s WHEN\"...well, it\'s just so hard to overcome that depression. And, part of me totally understands his desire to be pain free and not a ginea pig to the doctors he sees. It\'s just insane some days! No one knows how I feel, really. You may have some idea, but I do feel alone in this even though my family really tries. This just stinks! I\'m sorry for your pain and for anyone who is going through this. It\'s a silent disease. May we all continue with strength and courage, and most of all love.

Feb 7th, 2013 6:34pm

This blog is WONDERFUL!!! And you are so right. We are here to help one another. I feel blessed having met you and Hugh and becoming more aware of TBI and the life lessons that evolve as the family recovers and moves on. I will share this site---keep up the great work Rosemary!! your friend, Ann MacLean, RN

Feb 7th, 2013 3:46pm

i too am a caregiver for my husband. and we ened up homeless out of everything because of money so i really know the stress of not only being a caregiver but taking care of homelessness at the same time. now we have a small second floor apartment we had to take whatever we could afford but as you might know stairs are not his best friend so i deal will falls and such.fear of him hitting his head again. we both live on disablity and let me tell you it is hard but we do it month after month.we dont get rent help by the state which we do qulify for but i have fought the system for so long im to tired to even try for help anymore. as i watch some people abuse the states help my anger gets the best of me but once again im thankful we have a home even though it does not meet his needs we cope. we live in a community of no tbi resorces. so our days are long and empty. no respite for him or social interactions anymore as people just stopped coming around because they cant cope with tbi so hes lost all friends and just sits home in front of the tv and i do all i can to entertain him. tough it is and im burnt out. totally burnt out. lost for lack of my own social life because my life has become his. can you understand that. i do go to group for some sopport but like i said it has nothing to do with being a caregiver of tbi but it helps some.i wont give up and maybe some day we will have the right things we need for him to want to strive again. i live in northern vermont.cold right now so we dont get out for our walks. my name is linda hartigan. thanks for letting me vent and sorry about my spelling. sending my prayers out to you and your family. you are movtivated as i was but i have lost all that from being pushed down by the cruel system and lack of help here.

Feb 7th, 2013 9:32am

Wonderful,I will share this with family and other TBI survivors. GREAT IDEA :0)

Feb 7th, 2013 8:26am

Thank you for sharing. I am the husband with a TBI cycling accident, and I will share this with my wife Julie. Many of our friends and family, don't realize how much she, and you, have gone through. thank you again, and again! Bob E Ruddy

Feb 6th, 2013 7:26am

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