I got to see my mom over the holidays. For those of you who don’t know, she is in a nursing home. She is fully dependent… is fed, diapered, in a wheelchair, and no longer talks. She may or may not know who I am on any given day. This post is for her whom I miss. This is about Mom’s traumatic brain injury. Even though I can physically hug her (one-sided), I find I am truly missing my mother!
This post is extremely difficult to write. However, I do feel it is necessary and would love shares on it in hopes that it results in a medical study being done that may result in the prevention of others in the future from going through the same fate.
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How it Began
In the spring of 2009, Mom phoned me claiming she had a spell in church. She was reading the scripture and knew she wasn’t making sense or thinking clearly. She did finish, knowing something was wrong. I honestly have no idea if her spell was as visible as she believed it was. I grew up near a small hamlet with less than 50 people living there. The church community is close and knows each other very well. Surely someone would have taken her in if her spell was that noticeable???
Anyway, for whatever reason, I came to discover months later that even though Mom shared this incident with me (who lives an 8-hour drive away), she did not share it with Dad or any of my siblings, all of which lived close to her. I suggested she see a doctor and she did. However, we are talking rural. No tests were immediately done and what was happening was not properly evaluated. Fast forward a short time later and Dad took her in to the nearest hospital because her one eye closed. Of course, if you knew my mother, you wouldn’t be surprised to know that she first made a delicious lunch. She always had to make sure Dad or any visitors were fed!
I got the call later that day that Mom was being transferred to a bigger hospital in the city. Surgery was likely needed. We came to discover that it was a brain aneurysm. My siblings were all there. I was able to fly and meet up with everyone prior to her surgery.
Not the Update We Were Hoping For
Eventually, the family received an update. The aneurysm had ruptured during the surgery. Thankfully, there were two neurosurgeons in the room, so they were able to get the bleeding under control. However, when they went to wake Mom up after the surgery, even though she tried to talk, she couldn’t. More tests were done and it was discovered that she had a bleed of a couple of centimeters on the side of her brain opposite the aneurysm.
There really was no explanation except for the possibility of the increased pressure required to stop the bleeding having been too much for the opposite side of her brain. However we looked at it, my mom now had a traumatic brain injury.
Uncertainty
Mom was in critical condition. This was certain. At one point, Dad went to see her in Intensive Care and walked back out insisting she wasn’t there. She was… he just couldn’t recognize her. The neurosurgeon didn’t know if it was best to go in and do another surgery attempting to drain the blood or leave it to eventually dissipate on its own. If done, the surgery would be risky.
She already had open brain surgery for the aneurysm. There was no way she could handle another open brain surgery. The risk then was, should a bleed happen again, that there would be nothing they could do to contain it and ensure her survival. Each day the family went in not knowing if it would be surgery day or not.
Then one day we were told that it appeared that the bleeding had stopped on its own and they had made the decision to let the blood dissipate over time. Mom would not have to endure another surgery.
Thankful I Could Be There
I was on maternity leave from work when this all happened, which is why I was able to be at the hospital much more than I would have been able to otherwise. That and the fact that my husband took over at home with the other kids and their activities which allowed me to be away.
With this stated, my heart goes out to anyone needing to hang out in either the intensive care unit or brain injury wards of hospitals. If the sensing of energy is any indication, my baby that I had to take with me each visit soon started to scream the moment we walked through the hospital doors. She did this each and every visit. Fairly insightful for an infant!
Powerful Moment Etched in My Memory
Probably the most powerful moment to witness was when a priest that knew her came in and did a prayer circle. Mom, who had been pretty much unresponsive up until that point, suddenly started to move a bit during the prayer. It was clear that it was in response to the prayer surrounding her. I will never forget that moment!
Recovery
Mom had one heck of a long road to “recovery.” I have recovery in quotations because, if I’m being honest, I never did get my mom back. She did eventually learn how to walk again and did some talking even though finding the words to say was a challenge. Mom had written a weekly article for a local newspaper before this happened, but never wrote again. She was never able to provide or care for others as she had before.
Miraculously, Mom did drive short distances in rural areas again for a short period of time. However, she likely shouldn’t have been driving as she simply lacked the reflexes, judgment, working memory, and problem-solving skills to drive. Even picking up the phone, knowing how to talk into it and dial a number was extremely taxing for her at her peak of “recovery.”
Mom Today
Mom has been in a home for a couple of years. This was a difficult decision for Dad, but a necessary one that was made. She requires care 24/7 and cannot be safely left alone at all. She may or may not understand what is happening around her. If she is aware, she rarely demonstrates it.
One thing that is for sure is that she loves seeing children. If we want to see Mom smile, we just need to bring a child along for the visit. Her head goes up and down, she smiles and sometimes even dances in her seat!
It’s not easy seeing my own mother in this state, knowing that if she were a family pet that animal rights advocates would insist she be put down. After all, this would be the humane thing to do. I am immediately washed over with guilt for even having this thought…
One thing I do know is that when my mom does pass, it will be as though she has passed twice. The next passing will be the physical body only. The rest has already passed.
What I Wish
Dad and I had a discussion again the other day about knowing of other people who have been in the predicament of being unsure of whether to drain blood in the brain or leave it to dissipate on its own. It seems that neurosurgeons still are not certain what is best. Certainly the decision to let a bleed that has stopped dissipate on its own is less risky which is what the medical professionals aim for. They are there to save lives. In the saving of lives, however, sometimes the decision that might provide for the best quality of life long-term may be overlooked.
What We Will Never Know:
No one knows whether or not draining the blood would have resulted in Mom’s death or if it would have resulted in a higher quality of life for her. We will never know! We also will never know if Mom would have gotten dementia, Alzheimer’s, or any other medical condition that would impact her ability to know who we are or to process language.
What We Do Know:
There has been no follow up over these last years of her life to study or determine whether or not letting blood dissipate is the best decision overall. As I stated before, medical professionals aim to save lives first and foremost. Quality of life is second. They did save Mom’s physical life, but was her life actually saved?
Surely some follow up of what the end result is when blood is drained or not drained in this type of traumatic brain injury would provide a bit of clarity for families and medical professionals in the future. No follow up means that medical staff will never be further ahead for what to recommend. Of course, recommendations will continue to be made based on the lowest risk, saving of a physical life, and nothing more.
I can safely state the above paragraph because I know others personally that are dealing with a similar brain injury today. Medical professionals still do not know what to recommend and simply go by what is of the least risk for the patient. I pray they have a better long-term fate than Mom.
Dad: “If I could go back in time, I would insist they go in and try to drain that blood. She may not have lived through it, but at least…” his voice trails off and the subject is changed.
Yes, Mom is still alive, but she certainly is no longer living.
My Plea
If you are a medical professional reading this, please start a study that follows up with families in which there was bleeding on the brain comparing long-term recovery in letting blood dissipate as compared to going in and draining it. If this post achieves one thing, I would love for it to be this.
Resources that May Help
There are a couple of books that I have read along the way that I have found helpful in shedding light on some of the changes experienced with Mom. They are:
Feeding My Mother: Comfort and Laughter in the Kitchen as My Mom Lives with Memory Loss by Jann Arden
Left Neglected by Lisa Genova
How About You?
Do you know of anyone that survived a traumatic brain injury and/or a brain bleed? If so and there was blood involved, was it drained or left to dissipate on its own? How has the road to recovery been?
Sending love and blessings to all who have been down this road in one way or another. Whatever journey you are currently on, please hug your loved ones when you get the chance to and take the time to take care of yourself.
Note: Sherry’s mom passed away July 19th, 2019, more than 10 years after her traumatic brain injury.
34 Comments
Wow, what a difficult subject to write about. I appreciate your candor and willingness to talk about this. At some point or another, most of us will be in the position of caring for our parents. Sharing stories like this is so important to our collective knowledge.
Thank you! I really do hope that it results in a study being done or at least opens up a conversation. I definitely shed a few tears writing it.
Such a beautiful story Sherry, as someone who was a caregiver for almost 18 years, I can tell you that you have done and are doing your best! You are a wonderful daughter and I am sure your mom knows that.
Thank you for sharing this,
Liliana
Thank you for these kind words, Liliana! I appreciate them.
Sherry, I had no idea we had so much in common. My dad had a cerebral hemorrhage in the back of the brain. My siblings, mom and I had to decide whether to have surgery to remove the blood or not. We were told that he may make it through surgery or may not. He lived for another 18 months after we gathered around his bed and a priest gave him last rights. He did not have good quality of life and we wondered if we had done the right thing. I have some articles published about it that you can access on my site under Writing and it is partly the subject of my memoir. Thank you for sharing and I hope you find resources and that there is more research on this.
Wow, we do seem to have a lot in common! I will have to read your articles for sure. There is a lot to process with a cerebral hemorrhage and it is difficult to know what to do. I definitely would love to see more research done.
Thank you for this beautifully written post. I’m so sorry about your mother. I understand to a degree. Doctors saved my grandmother from a traumatic car accident, but her quality of life for the next several years was really poor. I know they had to drain blood from her head at least once from swelling. That may have helped her cognitive side. I hope they do further research on this.
Thank you for sharing your experience. The brain is such a complex organ and we all want to see our loved ones alive. However, it sure is difficult for everyone when the quality of life isn’t there.
I am so sorry that you are going through this! My mother’s mom has dementia, and it is so hard for family to see her in this state of mind. She doesn’t know who I am anymore. Don’t feel bad about wishing that your mom was in a better place. If you have faith in Jesus, you know where you want your mom to be. You don’t want anything bad for her. You love her even as she is now. I pray that your family has peace and that you all enjoy the times when she smiles and dances with the little ones. That may be showing that just a little part of her is there. This must have been difficult to write. I hope that helped you in some way as you wrote it out.
Thank you, Leioni! Yes, I am confident that Mom will be in a better place when she does physically pass. I am sorry to hear about your grandma. It is so hard when people that mean so much to us and that we love and admire don’t recognize us.
I used to do pharmacy deliveries, including the medication for one of the local nursing homes, and I got used to seeing people in all sorts of mental states – including the ones who weren’t really there. It’s tragic. You’re absolutely right, doctors may be able to physically save someone, but we lack the ability to ask if it could be in their best interest – and our society isn’t in the state to take on the ethical challenge that poses. I’m sorry for your family’s loss and this tragedy. Perhaps you can reach out to your mom’s neurosurgeon and ask if they know of any studies being done about the long-term effects?
I completely understand when you say that our society isn’t in the state to take on the ethical challenge that poses. Mom’s neurosurgeon was fantastic in his communication and honesty with the family. He truly wanted to do what was best… he even came in his sneakers on a day off to chat with us! It has to be tough for the medical field as well. Famlies want their loves ones living and remain in strong hopes that things will somehow get back to the way they were before. For some, life hopefully does get back to normal over time. For Mom, it didn’t.
Dear Sherry I feel for your family greatly. I also have questions…I had the privilege of helping to care for Aunty 💕 and would help her as much as I could squeeze time for even when she was to try to do self care….I knew what she had already been through… I asked questions about further medical care on more than one issue and very soon got transferred to the other wings instead….no one will ever know how that felt… when I was with her we would go back to cooking in harvest etc and I would dance with her when music came…. So great that your mom still is able to show her love in any way she can….Hugs to you all🌹🌹
Thanks so much, Sharon! Mom certainly took great pride in her cooking and definitely loved to dance! Hugs to you all as well.
Dear Sherry
what a great article you have written.
My husband Lou has known your mom all his life, and I have met her almost 60 years ago. on my first trip to St. Front to meet the relatives.
It is awesome that you have had the courage, to write this, and we sympathize with all your family.
It has been 2 years now since I last spoke with her at a relatives 50th Anniversary.
She is fortunate to have such a loving family, and that Don is so capable of handling her when he takes her out.
She was an very special lady to many people, and even today is admired my many.
thank you, and continued love and happiness to all your family.
The pictures you have posted are very precious.
Thank you so much, Yvonne! I know Mom always loved visiting with you and Lou as well.
What a beautifully written blog Sherry! Your Mom was such a happy vibrant person before her illness . We always feel so helpless in these situations but I know she feels the presence of her family always when you visit. Hopefully your story helps others in the same place in life and that more research is done on the outcomes. Take care!
Thank you, Faye! I appreciate you taking the time to comment. Mom definitely loved to happily visit with everyone she could before this happened.
Very good article Sherry, I never realized that is what got her to this stage, makes sense though. I also had a brain injury, but mine never involved a bleed so at the time I don’t have proper use of my right side, but am fairly independent. I would see your Mom in Kelvington
and we were always comparing our achievements. I thought she was in the same class as me but can see where the bleeding definitely caused further damage. Thanks for sharing, was good to get an update on her, and I am very sorry her situation
Thank you so much for taking the time to comment, Val! Glad to hear that your recovery has been much more positive.
Sherry, first and foremost, give your mumma a hug and a kiss for me. She certainly did everything she could to please anyone who ever walked through those doors at the farm. God love her. I noticed in that picture of your daughter crying and your mom trying to do what she could, before I even read what you wrote.
I love the awareness you are bringing with this article, and I hope that somehow, it can spark something more to be done.
Love to you and everyone in your family. xoxox
Thank you so much, Kelsey! I truly appreciate your comment. It means a lot!
Sherry,
Thank you for sharing your story. It was a very personal experience and you wrote a beautiful piece about your Mom and what she and the family experienced. Your Mom was (and most likely still is) a kind soul. This blog came to me at a very appropriate time, my mother is having issues after a head injury, no bleed luckily. Take care.
Thank you so much, Sandra! I wrote this as part of my own processing and am a bit overwhelmed by the support and discovering that we certainly are not alone in this. I wish you and your family all of the best in your mom’s recovery!
I have known your family for years and your mom was always such a kind lady!! I never realized the entire story until I read this. I am sure she is aware she is surrounded by the love of her family. I wish you all strength as it is incredibly hard to see a loved one like this. I am so happy you wrote this as it may help other families going through the same thing find some sort of comfort.
I have lived with my husband(common-law at the time) and his traumatic brain injury for 18 years… it is a different situation than your mom’s but reading it takes me back … Anyone who has spent a lot of time in the ICU , waiting for a sign or for the doctors to tell you anything, is incredibly draining. The fear of the unknown..
I have always wanted to write something about our journey but never knew where to start. You have just inspired me to do so….. Thank you for sharing this with all of us. It’s a hard thing to talk about!! Head Injuries in any form are very upsetting and life changing.
Thank you Sherry.
Take Care ❤️
Wow! I knew that your husband had suffered a brain injury, but didn’t realize the extent of it or that 18 years have past since then. To be honest, I was hesitant to publish the post, but it just felt like it had to be done. I initially wrote it just as a way of getting my own thoughts out. I definitely recommend writing out your story. There is healing to be done in doing so and there are many others out there who will be able to relate to it! Let me know if I can help you with anything along the way.
Sherry you write so beautifully. Thank you for sharing your story. I am so sorry you have had to travel down this road of not knowing. I hope your blog brings awareness and advancement in understanding this part of brain injuries better.
Thank you so much, Denika! I truly appreciate your kind words.
I’m so sorry for your family and for your mom. TBI sucks. It truly does. My husband fell off a ladder in 2014 and sustained significant brain damage. I was 15 weeks pregnant. For my family, the most difficult aspect is seeing him but the “him” we knew and loved being gone.
Did your mom struggle with anger afterwards?
Honestly, her regression or progression, depending on how you view it I guess, scares the hell out of me.
I’ve not know anyone who came so far to go downhill later? Did they do any brain scans to explain why or was she diagnosed with another disease?
Again, from one TBI family member to another, I am so very sorry.
Trish
Our story (well the edited version) is here https://www.habibihouse.net/traumatic-brain-injury/
I am sorry to hear that your husband has a TBI. As you say, it definitely sucks! My mom never really struggled with anger, but I have heard of many who do. For my mom, there were no scans done in recent years. That is what is so frustrating… the lack of follow-up! She hasn’t been referred to or followed up by a neurologist since shortly after she initially got out of the hospital. I am not sure if it is because of her age (she is currently 78) or what, but she hasn’t had a follow-up scan in years. That’s why I would love to see research done. I would also love to know if there is a large difference in her scans if they could do a current one as compared to when the hemorrhage first happened. It may be that there is something else going on that affected her progression and made her regress so much. I sincerely hope and pray that your husband continues to make progress in his recovery.