Mum is still not responsive. Its day 22. She is no longer COVID positive. I know right…what a fighter! Fighting off COVID after brain surgery!
They moved mum to General ICU so my family there could visit. My brother let me videocall with her. I swear i could see her eyes try to open! I may just be hopeful. She really doesn’t look good.
After her operation the surgeon said he expected only slight weakness in the left side. Maybe slight memory issues. Mum has a trachy now on a CPAP with 22% oxygen support. She has apparently tried opening her eyes when they washed her. Just ever so slightly. And she chews her feeding tube.
My brother mentioned that we need to look at the reality of the situation. Mum has always been independent and fierce. She wouldn’t be able to deal with severe mental and physical deficits.
I need to ask a few questions from you guys;
How long was your coma?
What deficits do you have due to the lenght of your coma? Or is it due to the aneurysm only?
If you had a loved one that had a BA with SAH and you had to decide what comes next what would your questions be?
If you can remember your coma…was there anything that anyone did that really helped you?
I know my mum is old and I have to face the reality that there may be some difficult discussions to be had. So please be honest.
Hey VV,
I’m Merl from the Modsupport Team. I too am in Oz, SA actually.
Your Mum’s a fighter, that’s for sure and that is a REALLY good sign. How she looks at this time is not a great indicator, after surgery I looked damn awful, like someone had whacked me with a baseball bat. I felt like it too. Recovery takes time and nobody can tell you how much time that is.
Now your questions:-
I was placed in a coma post surgery, but I did not have a BA nor a haemorrhage. I had a craniotomy. It was explained to us, the wife and I, that the brain needed time to heal, to allow swelling to subside. We were not given a time period, that was up to the medico’s, but I was under for 20 days. I was in my late 20’s, so my age was more on my side. But even after that… …I was not well. As I’ve said to others “Recovery is a slowly, slowly thing. No, I mean S.L.O.W.L.Y., it takes as long as it takes…”
Because your mum has had a haemorrhage it really can be variable, every bleed is different. The location and the size are 2 things that can have a huge impact and there really is no exact measure of impact. I often say ‘2 people can have exactly the same brain injury, but have vastly differing outcomes’.
You state your Mum is a fighter. My advice, give her some time. Listen to the Dr’s that are treating her, they have her information at hand. I am very unsure (in fact I have no clue) of services available in South Africa nor how you would access them. There maybe a Social Work Department connected to the hospital you could connect with, but it maybe worth investigating what options there are now.
If she was here in Oz I could give more direction, as prior to my own situation, I worked in the sector and know how the systems here work. Look, it might not be needed, she could wake up tomorrow and wonder what all the fuss is about, but it would be well worth investigating ALL of your options ie What services are available? How to access them? And Costs?. This way as things arise, which I’m sure they will, you’ll already have some information to start from. Starting with zero information can be difficult and VERY stressful, so make a start before it’s needed.
The next thing I’m going to say may sound rude. It’s not supposed to sound that way BUT there is very little you can do from the other side of the world but to be there for support of those who are there with her. Presently with all of the travel restrictions, I doubt you’d actually be able to even arrange it at the moment. This is a stressful time BUT you also have to look after you, don’t forget about yourself. You can’t be there to support others if you don’t look after YOU too.
So is mine, but I’d still be unsure about those difficult discussions. We understand that and often it’s not until it’s right in front of you that you think “What about…?” and we understand that too.
@veryvee Good news that your mum recovered from COVID for sure.
I was not in a coma and so cannot answer questions from that standpoint personally. its interesting what the doctor reported to your family. After rupture, my doctors told my family not to expect anything - not to wake up, not to know who anyone was, etc. I surprised them all. But then each day they told family they were doing all they could, but suggested that my family shouldn’t expect me to make it through the day. All this for 21 days. Basically my family was told “We don’t know” for all the questions they had. I guess everyone finally figured out I was going to make it, I surprised them all. So as Merl said, everyone who ruptures is different.
I recall your Mum was in a medically induced coma, have they stopped that treatment? As we age, things are just harder for us to rebound.
I do have experience with three family members, parents and a brother. Some questions are really difficult, some actions are more so. I knew what those family members wanted and so supported them. With my brother, there was nothing the doctors could do so it was a matter of stopping his friends from trying treatments that would have sent him to Mexico. And keeping the Residents honest. My family doesn’t believe in false hope. We have had friends who tried treatment in Mexico, it was extremely expensive and didn’t work. With both parents, it was just a matter of standing ground with the doctors on what my parents wanted. Luckily with my Dad, the Palliative Care Team helped out as his cardiologists had said no on heart surgery and then changed their minds after the PCT came in. Dad was still cognizant and I simply asked him what he wanted as the surgeons were talking to the family and not to him which really irked me. With Mom, there was a Resident who helped me with my Mom’s wishes. She was the only one who came in and talked to her, she provided unspoken strength to me to stand my ground in Mom’s wishes. I guess what I’m saying is if you and your brother know what your Mum would want, then stand your ground for her. Believe me, it reduces the stress of knowing what parents want and respecting their wishes.
As Merl suggests, taking care of yourself is more important at this time. I would really support your brother as he appears to be the one who has to listen to the medical team on a consistent basis. He will need to get all the wills etc in case your mum decides she has had enough of this life, Also needed will be the decision on what to do with her remains if that should happen. My father wanted to be buried at a VA cemetery and Mom wanted her remains donated to a medical school and then she was buried with my Dad.
Both of you need to take time everyday away from focusing on your mother and spend some time enjoying life. Stress and emotions are high for both of you right now and you need to reduce some.
For folks in a coma, music can help reach a part of the brain that words do not. If your brother can have some type of MP3 player with all her favorite songs, I think the RNs will play it for her. Just make sure it’s not an expensive one and has a charger in case it walks off. I recall in ICU, my BH was singing a Christmas song to help me remember how to walk. All the staff joined in the singing and a woman woke up from a coma and started singing right along. Also just talking about your day, funny stories and memories about your youth, if she has grandchildren, keep her up on them as well.
Hopefully some others who have experienced a coma will come and reply.
Difficult times for you and your brother, I hope the best,
Moltroub
I was in a coma for about a week or so, a good portion of it was medically induced and then I guess I decided to stay there a little longer on my own. What I remember most clearly when I awoke was that I had been surrounded by love. I did not have specific memories of anyone who had spent time with me in the usual memory kind of way, but I did have memory of the feeling of being loved. Sorry if I can’t explain it very well, it is not easy to explain.
On reflection, I realize that there is some sort of awareness of what is happening around you when you are in that state. I would say from my experience that I am grateful for those who spent time with me and made me feel loved.
Hi wonderful to hear ur mum is finally fighting. I personally had a ruptured brain aneurysm in 2008 and was medically drained induced into a coma state becuz of the severe pain in my head but I can say this important thing make sure her bowels are moving and she’s getting the best nutrition in her state because I ended up with an ileus abdominal swelling due to not eating during my coma which lasted a week and a halfish literally nurses thought I was ready to give birth because my bowels were so slowed down due to the mega doses of pain meds that kept me unconscious they had to use an eg tube to suck it out of my stomach sorry but it’s the truth I was miserable also when they started tapering my meds and I was slowly coming back to reality when I woke up I was completely alone and confused I weighed 90 pounds and I couldn’t walk I didn’t know where I was or what happened for days I woke up alone because my family wasn’t there at that particular moment but my mom husband and aunt were actually in the Charleston area but we’re running errands it’s scary to wake up alone but ur mum sounds tuff and I have faith she’s gonna come out fighting! If there’s anything else I can help you with please don’t hesitate to ask my cell phone number is 864-606-7494 email is mlgunn73@gmail.com jus stay strong have faith but mostly don’t ever lose hope or give up
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