Dear Caregiver,
I’ve been thinking about something you said recently. About the way you imagine the world looks at you now. About the “burden” your journey has become. Brain injury has changed your life. This much is certainly true. But I can see that it has also changed you.
You didn’t ask for this injury or its cataclysmic aftermath. If there was an exit anywhere, I’m sure you’d be clamoring for the door. At first, it felt as if everyone was in your corner. People held you up in encouragement. People prayed and thanked God and offered prophecies of great healing. Everything happens for a reason, they proclaimed. Your family is a miracle, they exhorted. But time passes. People continue living their lives. Yours continues to be glued to The After.
Sometimes I see you apologize for things that are outside your control and I wish I could tell you never to say those words, I’m sorry. With your struggle, you are teaching the rest of us how to live. How to ask for help. How to live in honesty. How to love boldly, heartbreakingly, unconditionally. I know it doesn’t feel that way to you. I know the insider’s view is messy, exhausting, unending. I know there are days you truly do feel it will break you. But please never apologize. Your life is not an inconvenience.
There is so much about you that I admire, beginning with your capacity to nurture. You give to everyone in your life with such tremendous force; I wonder if you are reserving any of it for yourself. I see you – doctor appointments to hospitalizations, traditional therapies to innovative therapies – doing everything in your power to restore quality to the life of the person you love. You have become an advocate for others in this world. And even though your own life is piled high with responsibilities, you always find the time to share your voice with others.
Over the past few years, you’ve been knocked off your feet more times than I count. I don’t always know what to say, so overpowering is the sense of injustice I feel in witnessing your prolonged struggle. And yet, you rise. Maya Angelou’s fierce words come to mind, “Leaving behind nights of terror and fear, I rise. Into a daybreak that’s wondrously clear, I rise.”
Brain injury has changed you. It has broken you, rebuilt you, strengthened you, and humbled you. Sometimes it does all of this in the span of one day. I don’t know that I have the words to make this journey easier for you, but I can offer this: thank you. Not everyone can do the job you do. Not everyone can do it with compassion, grace, and laughter. Not everyone has the strength to ask for help or the wisdom to recognize their own human limitations.
As far as caregiving goes, perfection is not the goal. You don’t have to be a superhero, a brave warrior, or any other glorified figure. You can simply just be you, willing to carry on – a remarkable person, indeed. Trust me when I say, friend, there is nothing about you or your journey that will ever be a burden.
In admiration,
Another Caregiver
Comments (15)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
This is so true I always felt and still do at times a burden to my family..... although have had a good recovery there are times I know they get annoyed with me and cross when I forget or cant process things
Ellen replied on Permalink
Reading this blog had me in tears for it was the first time in two years that i truly felt someone understood what I have been going through. I am a caregiver to my husband who suffered a TBI in 2017. It amazes me how the doctors we’ve gone to never seem to focus any attention on resources for caregivers and if you happen to find one are resistant to sharing what you’ve found so that others may benefit.
My friends also try to be supportive but in reality they have no basis for understanding what the TBI journey is like on a day to day basis. Thank you for all of your beautiful and honestly written pieces. It is nice to not feel so alone.
Karen replied on Permalink
I feel the same way, Ellen. This piece hit me hard today. We just crossed the one year mark and today isn't much easier than it was 365 days ago. People seem to stop being so supportive when they can't understand why we still struggle.
Heather replied on Permalink
This is a wonderful article! Thank you so much for comforting words. My boyfriend and I are struggling to stay above water. Once I found the correct fit in Dr.s after trying for 3 1/2 years and started treatment there was an amazing difference within the first two months that I decided I could find part time employment and did at a Montessori school here in Anchorage. It started off great. After the first few weeks I had to switch to part time from full. I took on too much too soon wanting to please and help. The problem is, my boyfriend started acting out towards me once treatment started. This whole time trying to get better and actually feeling really good about life again and myself he has been knocking me down. His response to why? It’s been a long hard road. Six months of improvements have gone down the drain and started a major set back. The set back has been going on for over a month now. It has set me in the frame of existing again, not living. Self esteem is back under my feet stomped in poo. I’m not sure how to work out of this. All I feel now is burdening to him, work and myself. It’s is so difficult to go from six months of me doing it all on my own to this. The accomplishments are overlooked by trying to maintain control over myself. My ex boyfriend caused my TBI four years ago. He viciously attacked me for his own selfish reasoning. I pressed charges, moved out right away and never looked back. All there has been since is chaos. Lacking support doesn’t help. Abandonment and rejection from friends and family made this more difficult. Though, I had managed. We are trying to work our relationship out. He is aware of the damage he has done and the set back it has caused. He’s no longer motivated to read and learn anything else. He thinks he knows it all. I don’t know it all, though am always researching and finding new things. I was so excited and happy about what improvements I made. I thought it would strengthen us and be a relief for him. Strangely enough it had the opposite affect. Of course I’m withdrawn emotionally and physically at this point. Disappointed, confused, hurt, angry, sad, etc. He has been encouraged to find a source of help. He is stubborn and hasn’t done anything. If I, a TBI survivor with PTSD, peri menopause, ADHD, hypothyroidism, and insomnia, can navigate through all of these disabilities and get help. Why can’t he? My head is spinning with flooding thoughts and complete exhaustion after all of this. He was the last individual I expected would deliberately throw me off course. Any advice? I’m stumped.
JayKay replied on Permalink
I am new to searching for help and support for TBI after realising that extreme accusations and behaviours with abuses could possibly be from his many concussions from many years ago. I recently did a focused search for answers on this and found that there are long-term effects, especially when people have never sought help or therapies, and that there is still help even years later. I am now just starting to look for what and where I could find some of this for my husband (even though we are separated already). I really feel for you in your situation, and that you are carrying the load for the wellness of the one you hoped would be there for you, in support and caring. Sounds like your boyfriend might fit the description of a narcissist. There are a few professionals now speaking on YouTubes on that. Hope they can help you in that part of it.
Jared replied on Permalink
My girlfriend is everything to me but I sometimes think that she doesn't quite understand. From the sounds of your situation maybe she does? We just don't ever communicate. That's the hardest part about it because I'm not upset with her. I think she's doing great, I think she's awesome, she just got her s*** together and for that she needs to be rewarded. Now, I'm trying. I'm struggling so hard every day. I have these headaches and I don't know where my mind goes to but it'll just go off into space. It scares me because I know I could do so much more. I'll keep trying and trying. I just hope that the people around me don't feel like I don't care about them because I do care very much. I want them to know that I'm proud of their accomplishments and what my girlfriend is doing. She should not feel like crap. As a matter of fact, that's the last thing I wanted her to feel like physically and emotionally pulling away and here I sit all alone
Theresa Ellerby replied on Permalink
My life the past 2 yrs 4 months
Doctor Michalsk... replied on Permalink
of this philosophy. I do believe that indeed I am not a burden to anybody. I continue to work at my recovery. I hope that I can help others through my journey with this brain injury.
Marina Agerter replied on Permalink
This work is so touching! Thank you for sharing it!
Teri Friedle replied on Permalink
Thank you for this! It made me cry, but in a good way!
Living with a TBI is so HARD!
Reserving energy to take care of myself so I can take care of everything else has been beyond my ability.
I KNOW it's necessary, but I haven't figured out how!
Suggestions?
Sandy Nolan replied on Permalink
Wow! That is all I can say. Your words were so exact to the emotions that I feel daily. Thank you! I needed to hear that today. Please don't stop what you are doing.
MGriffin replied on Permalink
Wow, that post moved me to tears. As a caregiver of 18 months now to my husband whose TBI has run the gamut, I cry a lot more, curse a lot more, get frustrated, you name it. “The After” is really hard, and I’m pretty stubborn - not a good mix! Thank you again for your blog. I love it and am so grateful to know your site is a source of encouragement, smiles, and, most of all, hope. Hope for us caregivers who, as you mention, never asked for it, but we just love our family and will do whatever is needed. XO from Tennessee.
P jones replied on Permalink
I am a caregiver to my son. He was fine til he was 24 and suffered a TBI he didnt ask for this and neither did I. He is 37 now. He wants a girlfriend to share life with th hat is completely normal for a young man. It breaks my heart I dont know what to do. I ask why me? But as you stated we take care of them out of love. He is completely sexually functional and needs someone. But I get depressed as he does because I cant do anything about it. He would be so good to a women
Any suggestions would help. Thank you. Also from Tennessee
Cynthia replied on Permalink
Thank you!
Maria replied on Permalink
Thank you for sharing. I felt as if you were describing me. After two years and with my son being totally independent, I'm going back to work. I'm a teacher and at the moment, I'm off, on "vacation". I still walk with him three miles and as we walk, he's timing himself, one minute, to come up with words using differen letters at a time. I continue to give support in every aspect; but there are times that I feel so alone, isolated from the rest of the world. I'm sure my son feels the same way, specially because he continues to fight to be reinstated at work. Here is a man who doesn't qualify for any disability help, but cannot get his job back because of neuropsychological testing. And I feel unhappy because he is not happy. I don't know if I make sense. But thank you again for this article.