Brain Aneurysm Support Community

My mother's aneurysm burst and my life came to a grinding halt and I really really need help

Hello all, I have been reading this page for a couple of months now and posting only today. My mother had a ruptured aneurysm (Acom) and SAH on 5th june 2017. She was fine and healthy one minute and next minute she complained of severe headache and started vomiting. We immediately called for an ambulance and she was in and out of consciousness until we reached the emergency.
They immediately rushed her to the CT scan and on returning from the CT scan she had another seizure and that was really bad post which she went into coma (the doctors said she has grade 4 aneurysm rupture). They put a drsin in her head and decided to coil it after 2 days and keep her in icu. The next couple of weeks was beyond horrible as we have gone through hell. She had vasospams for several days and then ventilator associated pneumonia.
The doctors gave her 2% chance of survival and my strong mother fought it with all her will and survived it. She was moved from ICU into the ward after 45 days.
She was then moved into neuro Rehabilitation and she showed some progress but due to negligence and poor nursing in the facility she kept getting infections.
They then placed a permanent vp shunt in her head.
So we have now moved her home 4.5 months after the surgery and she is getting regular PT. Howver she is still not completely conscious meaning doesn’t show any signs of recognition, has bed sores due to poor nursing in the rehabilitation facility, however she moves her arms and legs, has good muscle tone and responds to commands sometimes. She still has tracheostomy tube and peg tube for nutrition. She manages now to breathe on her own for most of the day.

Im really scared and worried and finding it very hard to cope with as i love my mother so much and cant deal with her going through this as she’s the sweetest most pious person I know. How do I deal with this situation better and help her get better and on her feet? Why hasn’t she gained complete consciousness yet? Is this normal and will this pass?? What can i do more? I really want her to get better and back to normal.

If anyone knows of any resources I could use to help my mother get back to normal that would be great. Thank you!

My mom is 60 years old and was extremely active. We live in India . She never smoked or drank. Never was hospitalized. This aneurysm was the first time she has ever been hospitalized

Thank you

I probably cannot suggest any resources since I know nothing of your surroundings, but maybe someone can.

My wife’s situation almost six years ago now was very similar, but hers was grade 5. We had excellent medical help in Denver, Colorado, USA, so she went through what you describe, but she experienced it in a shorter time. My wife also was in excellent health, so that was totally unexpected. She is mostly back to normal now except for spasticity especially involving her left leg, so that she lacks confidence in walking where situations are new or not level. Giving her my hand is very helpful.

We have a friend in another state who suffered SAH the same year and is practically a quadriplegic. She, too, was in excellent health. Her recovery just has not been good.

I would make one suggestion. My wife had physical therapy, occupational therapy, recreational therapy, and speech therapy for a time after she was released from Critical Care. Is it possible for you to arrange that for her? I would say we had excellent acute rehab in all areas. Your mother may be going through the same sequence but at a slower pace.

Support her all you can, and let her know you love her. Be patient–it takes time. I’ll pray for you.

@ADRauch thank you so much for the reply and for keeping my mother in your prayers. We do not have many acute rehab nearby and the rehab facility she was transferred to wasn’t great either. She seems to have become more responsive after bringing her home. We have physical therapy sessions and beginnings of swallow therapy arranged for her, however what worries me the most is her semi comatose or state of not complete awareness. She sometimes responds by looking in my direction when I speak but most of the time she stares into blank.

My family and I are praying every day for her speedy recovery and that God blesses us with her recognition, smile and speedy recovery

As we often truthfully say on this site, every person is different, so that we cannot dogmatically predict an outcome.

I want to add something to what I shared earlier. Being in ICU that long will almost certainly retard recuperation. I don’t remember, but we were told how much muscle tone a person loses during one day on their back, and it is significant. So her semi-consciousness could be from the aneurysm, but it could also be from the medication and inactivity in ICU, or a combination of the two. My wife was in the Critical Care Unit (ICU other places) for sixteen days, I think it was. She was in neuro-recovery for two weeks after that and then moved to acute rehab.

My wife during that time of recuperation would say some really strange things, like asking me where I was. So I would try to bring her around to recognizing verbally who I was, and then all would be ok for a while. Then we might have to do it all over again.

Like others have said, it’s a marathon, not a sprint. We are glad to be in touch and wish we could do more.

Hello,

My mom had a similar situation and basically all the same procedures. She also had the head ache, vomiting, drain, vasospasms etc. We’re still only 6 months in from the start of everything but we’re lucky to be this far. We found that the vp shunt definitely helped with her consciousness. How is she doing with that?? Maybe they need to put the setting up higher so that it’s draining more quickly/often. Also, when my mom switched from her hospital to rehab center they were overmedicating her BY FAR. All the meds she had in the hospital they gave her which she didn’t even need and she was much more cloudy from. I would ask them for a list of what she’s taking and see what she needs. If some are intense medications they can definitely make her foggy. I hope this helped a little and I’ll be praying for your family!

Thanks for keeping us in your prayers. She hasn’t come around yet. She was beginning to get a little more responsive but got a very bad infection due to bed wounds and we are now again in the hospital for almost a month on antibiotics getting her treated as doctors suspect the infection to have spread out to the kidneys. Hoping and praying that the infection clears out soon and we bring her home. I feel so helpless. As far as the responses go, we haven’t been rewarded with her smile yet but she now moves her right foot and fingers of both her arms on command. But as she is weak cannot fulfill her task meaning lift her arms around. She doesn’t focus yet but sometimes I feel she looks at me but sometimes through me. She gets very anxious and scared when we her family is not around. And is able to express pain and discomfort. So I’m taking it on a positive note that she recognizes us and not able to express. I don’t know if that’s normal?! She doesn’t talk, walk or eat yet. Still has her trache and peg for nutrition. Good news is her bed wounds are getting better. I’ve been worried sick and trying to keep my thoughts as positive as possible. It’s gut wrenching to see her in pain. I’m waiting for her smile and desperately praying to listen to voice again and for her speedy recovery. I miss her so much. It’s been more than 5 months since her aneurysm burst.

The bed sores are absolutely ridiculous! I can’t believe that. They should be moving her once every hour at most. At least that’s what they did for my mom. It maddening that you’re supposed to trust these people to care for her and they aren’t doing their job correctly. I thought my mom being unconscious for 3 months was horrible but I couldn’t imagine much longer. I’m so sorry. I do know exactly what you mean when you say you miss her because I said that every day. I feel like we’re both equally as close with our mother’s based on how you’re expressing yourself. When my mom started waking up, she would do that same with simply wiggling her toes or fingers on command and that was such a miracle to us. Make sure you’re celebrating those because they might not seem like a huge step, but they are. My mom also had a trache and feeding tube, so when she did wake up she couldn’t even speak and we never knew what she was thinking or wanted. It’s very difficult to stay positive but you have the right attitude to keep trying! It sucks to see her pain and want everything to go back to how it used to be. I know you’ve probably heard this a million times, but it really does take time and had to be taken day-by-day. Something I did that helped me was making a journal and writing to my mom about everything she has missed while she was “away”. It was not only a great outlet, but somewhat fulfilled the feeling of being able to speak to my mom. Please reach out to me whenever. I was crushed that I had no one to talk to during this time who had experienced something similar and I just finally made an account on here yesterday. I wish had looked into this way longer! I really hope her infection gets taken care of and that there is a light at the end of the tunnel for your family.

We do expect the medical people to do a better job of looking after their patients. After all, why are they working there? My wife had the best of care, and for that we are thankful. We wish that for others, too. I understand the stage you are in right now with wiggling the toes, etc. We, too, celebrated every little sign of life, of ability returning, of recognition. The most difficult for me was the lack of communication for a time; it’s so important. We hope that in time that also will return along with all the other functions of life. Be patient if you can. Advocate for her. And look after your own wellbeing. Our doctors told us that I should look after my own wellbeing, that when she would begin to awake she would need me more. It’s true but difficult. You continue to be in my prayers.

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prayers, keep strong, she needs you now more than ever

Hello Dgr,

I’ve been in the same situation 13 years ago." but God won’t let me die that moment", because I have 3 children to nourished with love.
And I think this goes with her too, Though our body is at rest our mind is still working. Just make sure that there is a “RADIO” to make her mind alive,
When I was still in the hospital my elder sister brought a Radio as her friends psychologist advice. Same goes with me,my husband was told by the Dr. that I have a DAY to live and that He must bring a dress for my “funeral”, But I am here telling you and giving some advices.
Moving on with your Mom,Bed sores are really really is painful. Though your Mom still can’t say anything my advice to you is to just make the wound clean at all time/so it wont have some decays thats where the infections came from, Its easy for me to say because I was yelling when I regained consciousness"pain is everywhere" that time.
My advices for you and your mother to get back from sleep is to have a radio beside her bed and while she is sleeping try to talk to her you can see is she is responding “when her eyes are moving while closed”(indication patient is awake) could`nt talk best is to be conscious on her needs even without telling.
Hope this could be read by many who is having the same situation.
You can always message me through this.
By the way I Will pray for her fast recovery. tell me her name to that I could list her on my prayer book.(only her name pls)

Sincerely,
Maes

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Hello Maes,

Thank you for your advice and prayers. My mother’s name is Janaki. As you suggested I have been playing songs that she liked to her every single day for a couple of months now. Her responses are different for every song. I feel like she enjoys them. She is quite sensitive to sounds, even a small sound grabs her attention. She does not show any signs of recognition yet (no smile or focus) but she is definitely expressing pain, nervousness and now gets teared up once in a while. Even though she doesn’t show any signs I FEEL she knows who I am and understands me. As she is far more comfortable and less anxious when we (her family) are around. ! I try to always just keep encouraging her as much as I can and letting her know we are here for her. We encourage her and push her as much as possible to follow commands. Her infections (due to long term catheter insertion - acute pyelonephritis) and bed sores are coming under control that’s a good news. Doctors say they would be able to take the tubes out like trache, peg tube, urine catheter (sorry can’t think of a better term for that) when she starts coming around. I’m waiting for that day and for her beautiful smile and to listen to her voice and have a conversation with her again. I miss her very much and we my whole family is taking one day at a time with positive thoughts and prayers. Hoping, wishing and praying we soon come to other side triumphant.

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Thanks for the good report. You are doing just what you should be doing. Great to hear that her sores are getting better! Progress is sometimes very slow. Glad to pray for you.

Hi Dgr,
Its a great news that she is responding to music,"As the saying goes",MUSIC IS A PIECE OF ART THAT GOES TO THE EARS AND STRAIGHT TO OUR HEART". It really heals our soul.Anytime now she will soon open her eyes. And another thing for her fast recovery 'movement wise tip' massage her joints this is from the lower extremities down to her toes. by doing this her bedsores will heal quickly too. And specially for her to walk again by the time. We cant feel nor see you but 'Surely she FEEL your touch.
We and I are here to help you, always pray and GOD will make a way.

Sincerely,
Maes

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