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Welcome to My Caregiving Blog

Comments [12]

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 [12]

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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