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.
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!
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 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.
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:
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.