While awake and waiting

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Hi everyone
This website has been a god send since I stumbled across it last week and I’ve been on it every day since.

My otherwise healthy mother (58, active, no smoking/drinking) suffered a ruptured aneurysm last Wednesday night after a quiet celebration of my dad’s birthday. She had called my dad and brother upstairs after saying she didn’t feel right. She said she was going to pass out so they sat her in a chair. She began to vomit and lose consciousness. Ambulance came, and she was able to go use the bathroom with their assistance before going to the hospital.

I later got to my parents house and we got the call that she had an ruptured aneurysm and was going to get it coiled. They called to tell us the surgery was a success but they are going to take her for a CAT scan. They called back soon to tell us she was having “catastrophic bleeding” after the surgery and gave her/us very little hope. She’s at Sunnybrook hospital in Toronto which everyone keeps telling us is one of the best in the country. What’s making everything harder is only my dad can go visit for 2 hours a day.

She’s now in heavy sedation, intubated, with drains in her skull. The doctor said she is still showing lots of blood on the brain which can’t be drained and just needs to be reabsorbed. I think blood pressure goes up a bit every now and then, but otherwise vitals are ok and her pupils are reacting to light. Otherwise very little change.

After what feels like both a few days and a few months, she’s been there for a week and I know reading others’ accounts that this is still so so early in her recovery process. These days are absolute torture in which I can only manage to stare out the window or cry. I can’t sleep or eat and I have headaches from trying to fight off all the worst case scenarios that are working their way into my head. It’s Christmas soon and we’re all just hoping she makes it through another day.

I was just looking for advice on how to continue being while your heart is focused on my mom’s survival. I feel like I’m grasping into hope so hard my knuckles are white. I hate going back to my own apartment in case I miss anything and can’t be there for my dad or brother. But being at my parents house and just waiting for a call but not wanting any calls to come in… we are all so anxious that something is going to go so wrong so suddenly despite everything being ok so far…

I’m… just looking for some advice on how to keep your head up and how to actually make it through these very long days… :disappointed_relieved: should we force ourselves back to normal? Should I be at home trying to get on with my day/work or just stay with my family.
I’m just feeling so lost and numb and confused…

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Welcome dana to our group! While I’m always glad to see a new member, it is sad that anyone has to reach out to us. As someone who did rupture, I can honestly tell you the experience of being a patient and a loved one are as different as night and day.

As a patient, one is surrounded by high pitched noises and being disturbed every hour by the wonderful RNs who need to take vitals, etc. If the patient isn’t moving a lot, the RNs are moving the patient in attempts to prevent decubitus ulcers (bed sores). So there really isn’t any good rest for the patient. The blood that gets into the CSF takes a long time to be reabsorbed and filtered. Should your mother start having vasospasms, there’s a couple options for the doctors the Triple H Therapy in which they keep the BP up very high through drugs or another surgery.

For a family member, I can only share what my BH and family shared with me. My parents were afraid they would lose another child and came twice. It was extremely difficult for them emotionally and physically. Their way of handling it was to simply stay in denial. My BH still had to work but would drive the 75 minutes one way each night, save two, due to weather conditions. For about three weeks the medical team didn’t know if I would make it through another day. I believe this caused a surge of PTSD for BH that is still apparent now, seven years later, especially when we have to make the drive to the Neurosurgeon.

For my BH, work allowed an outlet of normalcy which was very important. It allowed nine hours of having to focus on something other than me. For BH having to make all the calls to our family was exhausting. Luckily some family would ask how BH was doing, they figured if anything happened to me, they would be told. I think one of the hardest things was for BH to tell family each day, I may not live. They didn’t know if I would wake up and if I did, would I have any memory of anything. The not knowing was extremely difficult for everyone but me it seems. The brain is still an unchartered phenomena in a lot of areas. I had a Fischer Level III bleed and one of the Residents had commented that there was too much blood. I think it took them all night to stabilize me for my coiling.

We are a faith based/science believing family. So lots of prayers across the country and belief that the medical team was doing everything they knew to do. Prayers for the medical team was very important to us. We often praise the specialists that work on us, I feel the Nursing care is as important and we need to acknowledge all the RNs do.

I have done something I rarely do on this site, which was to have my BH read yourquery and the response I have made. BH suggests to try to get back to work and home. BH said work was a huge outlet for focusing on other things.

You need to rest and get a break from things not within your control. We are both hoping you live close enough to your Dad and brother, that in case they truly need you physically, it won’t be such a demand. If your brother is of an age that he can’t do for himself and your Dad, then that develops another issue. Keep in touch with your brother and Dad daily. They will tell you how your mom is doing but focus on how they are taking care of themselves. They may need to be reminded to eat or clean the house, the daily things we often don’t think about in a crisis.

For your Dad, I would suggest that he speak to your Mom in a low soothing voice. My brain would try to escape all the harsh, loud sounds as they hurt tremendously. I responded best to hand holding and quiet or a regular talking level. Music was very soothing to me, so maybe your Mom will find relief in that. I used my smart phone and either Pandora or my music library. I was able to keep it charged on the “tower”.

I hope the family members on our group will reply to how they handled the stress.

Keeping you and yours in my thoughts and hearts,
Moltroub

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I can’t thank you enough for your reply.
We just received word that a scan shows she likely suffered two strokes and one may have been severe. They are telling us the next 48 hours are crucial to make sure there’s no more swelling because there is nothing surgically they can do. I’m guessing these are the downs but I barely know how to get through a day with no change let along with negative change…

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Good Morning dana!

Here’s the oddity and a bit of a learning lesson, I guess. The word “strokes” means two things - hemorraghic stroke (caused by a rupture) or ischemic stroke (caused by a blockage). Vasospasms can cause an ischemic stroke as can a build up in the artery. The easiest way I can explain a vasospasm is a constriction of the artery which stops the blood flow and then release it and stops it again. It can sometimes be controlled by the Triple H therapy of drugs in the IV. Many patients who have had a hemorraghic stroke end up with vasospasms. Depending on the location of the ruptured aneurysm determines if surgery is an option. I think, so don’t quote me, that the new type of stent I just had put in a week ago might help that. It was invented for ischemic strokes, I think. Despite the fact I just had one of these put in on the 18th, I haven’t done any research on it.

Most folks who refer to someone having a stroke are talking about ischemic. Doctors could be talking about either kind and you need to ask for clarification. Usually once they know you know, they will clarify every time, but not always.

It’s very helpful to do your research to start understanding medical speak. Doctors, RNs, and Social Workers (SWs) fall into this language as a type of protection I believe. It’s all the terminology they learned in university and use with each other. Be careful where you go on the internet for the information, a lot of it isn’t good. Stay with NIH or the bigger medical sites. Use the medical research in your country (USA is NIH). There’s a huge one in the UK and one in Canada. Japan and Finland have more aneurysm than other parts of the world, so I also like to read what they have researched. A background or some type of knowledge with statistics is extremely helpful. If an organization or research paper cannot provide how the statistics were gathered, you might want to ignore their information, IMHO. Many papers are just a synopses or gathering of other research all compiled into a paper that gets published. They usually give a good description and definition of what they are looking into. Whilst at university, my professors were sticklers for statistic gathering. I also tutored statistics there for a couple years I guess it was. The larger the number of subjects (participants in the study) the more significant the findings. I see now a lot of papers are written with just a handful of subjects and I can hear my professors shaking their heads and giving a lecture. But there are also larger studies that I believe the statistics are confounding as the researchers put in too much bias which would also cause my professors to cringe and tell one to redo it. Personally, I lean to the papers that follow the statistical rules I learned but that is my bias.

One of the things we often forget is that just having anesthesia can cause an ischemic stroke among a myriad of other issues. Many anesthetists will glide over those dangers as if they don’t exist but for everyone having any type of anesthesia those dangers are real.

It appears I have rambled on and on with my brain just going where it wants. This is one of my side effects which everyone on this site has had to deal with, not to mention my family. If you have any questions on the medical terminology, just ask. Someone here will know or can research it for you. If you have any other questions, please throw those out to the group as well!

Hoping for the best for your Mom,
Moltroub

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Thank you so much again.
It has been a tumultuous few days - we were told to say our goodbyes yesterday. They are no longer monitoring swelling in the brain as it’s so high. They expect she will pass from that. They are trying to lower sedation to determine whether or not she even has any brain function after all the swelling. They are telling us she will be completely vegetative even if she does pull through.
This waiting… these up and downs… it’s so devastating and exhausting. I can’t believe this is happening to my mother.

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Oh dana, I’m so sorry you and your family are going through this. Apparently my Neurosurgeon and her residents reminded my BH that we are all in a Higher Power’s hands, I just asked. It’s hard to think that medical science hasn’t progressed enough to save every life. When my Dad was dying, the Priest came in for last rights. He went on and on and on Ad nauseam to the family. I may have just had my third coiling attempt and I finally asked if he, the Priest, had forgotten his catechism. I said in my broken, aphasiac stutter, “death suck for living, not for dead. My Mom who was still alive at the time, was aghast that I would speak that way to a Priest. My Dad raised Irish Catholic and not so impressed with collars, laughed to the choking point and the ICU team came running in, demanding to know what was going on, all the while trying to get Dad to breathe. All Dad could do was point at me and start choking even more with a big old smile. Once Dad was able to breathe, he told the Priest, “Well, I guess she said it succinctly, you might give it a try with the next sap.” It’s a memory that I love even though it was his last day with us. When Mom passed less than a year later, I again got into trouble because the CNA got mad that I was tickling her feet. She went and got the Hospice doctor and the Hospice Minister. The doctor asked me what I was doing. Not understanding the CNA was pissed off to beat the band, I answered truthfully and said “tickling Mom’s feet”. The doctor asked why and again I answered with confusion, stutter and aphasia that this was something we did when I was little on the couch. I will also know when she brain dead because her foot won’t react to the tickle. Somehow, in my damaged brain, I thought they should know all this. The minister who is one of the kindest people I have ever met, let me know I had upset the CNA.

I share these stories because good memories are a lifesaving rope should you not be able to create more with your Mom. It’s really good when we can focus on them and not the heart wrenching loss. We still have to go through all the steps but the good memories help us through them.

I still continue to hope your Mom beats the odds, if not for herself than for you and your family, it’s the way I am. But if she has to leave, then please keep your family tight in supporting each other. Death does funny things to a family unit and the trials of a funeral, wills etc, can make things unimaginable to those who haven’t gone through them. Be kind to each other. We are always here for you, even if folks aren’t responding.

Still holding you and yours in my thoughts,
Moltroub

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I’m so so sorry to hear about your mother. I also had a ruptured aneurysm and was in the ICU for 10 days. I’m sorry to hear your mother isn’t doing well. I know this is a hard time for you and your family. My prayers are with you. I reached out to God when mine happened and said out loud, I’m not ready to go please let me see my kids grow up and mine stopped bleeding and pinched itself off.
No better time then the present to reach out to him to help and put it into his hands.
God please help her mother and lay your hands on her and help heal her. AMEN!

You’re in my thoughts and prayers.
Margo

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Hi Dana, I can only echo what Moltroub says, as a person who was also “the Patient” with a rupture, it was probably easier on me than my wife. I spent seven and a half months in hospital, in a coma for the first six weeks (which included a clip of the offending artery), but I can tell you that once I was awake the highlight of my day/week was a visit from my wife, seeing her smiling face (and looking forward to seeing her) helped me enormously, so all I can say to you is to keep on believing, keep on helping your Dad and your brother, someone please correct me if I’m wrong but I am sure I have read that four out of ten people who have an aneurism die straight away, and of the remaining six two will die in the first week, so if you are a few months down the line from the event that is a good sign. Stay positive for you Mum, Dad and Brother, I know the RNs who looked after me were fantastic.

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thanks everyone for your words.
Unfortunately the swelling was unable to be controlled and she was pronounced brain dead 2 days ago (I think)
Any advice on how to survive this initial pain would be appreciated

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Dana, I am so sorry you have to experience the loss of your mother, it saddens me to no end. Everyone grieves differently, so have patience with yourself and your family. The first year is the hardest. There’s all the planning for services, and the legalities that your father will need to do for the government. It can be overwhelming, be patient.

Take one day at a time, remember the great things you and your mom did through the years. Stay close to your family. Cry when you need to, talk and share how much you loved her and the funny things she did. Do some busy work to honor your Mom, perhaps putting photos in a digital frame or making a cookbook using her recipes, you can do this with index cards and a photo album. If you sew or know someone, have a quilt made out of some clothes. Theses things will make you cry and laugh and that’s a good thing.

We have a Wall of Remembrance you can find here: Wall of Remembrance

Remember we are here for you, so please keep in touch

Hugs to you and your family,
Moltroub

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Hi Dana,

I am sorry for what has happened to your mother. The initial pain can be processed in many different ways depending on who you ask but please make sure take the time to grieve alone and with your family. This will get your though in the long run. Please remember the love and good times you had with your mother as these good memories and her spirit lives on forever.

Condolences,
CatTreats

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I’m so sorry Dana, I’m sending you and your family many prayers during this time.

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