I have been posting like crazy here on other groups looking for comfort about my mom's condition but I figured that I wasnt asking the question right..so sorry for posting the same thing many times.
My mom had a CA nearly 4 and a half weeks ago..fast forwarding things..she has been awake and responsive for the past 3 weeks. However we notice that she gets more agitated and confused day by day...last night was really stressful because she was pulling all her tubes including the peg tube and yelling in pain. We noticed good improvements in the past 4 days when shes awake but the night is a different story.
Because she hasn't been assigned a neurologist for the past 3 weeks.......we got no one to ask so we ask google! We read a thing or two that says its temporary but then other things that are not good at all! I read some posts and replies here too but we feel that 3 weeks of being in pain, pulling tubes and all of this has been far too long!
We cant visit because of covid, cant transfer, and cant take her home. We just dont know what does all of this mean.
Best,
M
Written by
Maithalouni
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Can the clinician in charge of her care not contact neurologist by telephone for advice as this is completely unacceptable for her to be in pain and this agitated and distressed without her condition being managed I understand the barriers covid ha caused but it doesn’t stop clinicians communicating in different ways such as by telephone
Cwar90...there are no words to describe the hospital shes at... I'm furious about the fact they didn't do the thermal treatment though they have the equipment!.. the report read 'there is no need because pt in waking up' ...which she wasnt and actually went into coma... I keep thinking if they did the treatment then maybe we wouldn't be here...
Please avoid Googling your mum's condition as information can appear contradictory and confusing. The reason you're finding mixed messages online is because every brain is unique and, whether the injury results from trauma, stroke, hypoxia or other, every individual has different issues, outcomes, and time frames of recovery.
But there are many common side effects of brain injury. After a subarachnoid haemorrhage I was agitated, combative, pulled out tubes resulting in blood soaked sheets, swore like a trooper, talked outrageous nonsense and managed to lower the rail and fall on the floor. My family were assured my behaviour was all within 'normal' parameters.
Some people are sitting up making sense after a week ; others can have a raft of extreme issues for weeks/months/years...… Neuro professionals regard it as a 'Watch & Wait' process and address issues as they arise. My consultant warned my family against false conclusions based on uncharacteristic behaviour and that I could 'Turn a corner' (his words) at any time. I did so a month later when I reconnected with the here & now.
It's a long process which cannot be hastened by even the most talented neuro professional. Your mum's behaviour is unique only to her and no amount of online searches can provide a relevant prognosis.
Maybe start taking things one day at a time and settling in for the long haul of ups and downs, highs and lows, until your mum reaches an equilibrium. Meantime you can address any concerns via the consultant's secretary who you can contact via the hospital reception.
This is a harsh time for those with critically ill loved ones and I hope better days aren't too far off. All best wishes for you and your mum. Cat x
Thank you Cat3 for your response. You always add hope to my concerns.
The wait is really getting into us... The problem is that all of this is happening while two of her siblings and spouse are stranded overseas because of the covid lockdown (there are no flights!) And remaining siblings cant visit also because of the lockdown...we fear that her being there alone is complicating things and we dont feel that video calls are working as shes confused on why we are video calling in the first place....
Today we called her over video and we see that she is responding but few seconds later she forgets what we were saying and sometimes refers to things from the past that are not relevant. She also sometimes complains for hours on the restraints or the iv tube etcc.. she has all right to do so..but the question that goes into our mind all of the time is until when??? It is never easy seeing my lovely mom going through this while being so helpless ourselves that we cant be around her..
Your mum will only start to grasp situations and her memory to function (in fits and starts) when her brain has recognised the initial trauma and made moves to recalibrate and work around any injuries.
It always strikes me as a mammoth ask for a brain to work out what ails it and then to set about fixing itself ……..but that's what your mum's brain is busy with right now.
Give it more time. I feel for you with the frustrations and anxieties of waiting, not to mention the added complication of Covid, but there's so much work to be done and very little time has elapsed in brain injury terms.
I hope the day will come soon when signs of progress are apparent, and building week on week. Cat x
Your post has reminded me of the time my husband had left ICU and was on a ward waiting for a rehab bed. He had no idea who he was or where he was. They had to have a nurse sit with him all the time and at night he pulled his catheter tube out. They were very scary days.
People will keep telling you that every person is different and it is frustrating as we long for answers.
The only way I eventually coped was to deal with one day at a time.
Thanks you Lynd. The have started to assign a sitter with my mom for this as well. It is really frustrating indeed! Until when is a constant question...
May I ask how is your husband doing? Hope he has made a good recovery and both of you are well.
At first he thought he was at work or on holiday etc. He then thought he was living in past times. He imagined relatives long passed had been to vist him. So many things. When he come home he didn't recognise our house or our town.
However as time as gone on we live a fairly normal life but his short term memory is poor but you adapt to this.
As you know all recovery is different but always be hopeful.
It is a long road to travel. That's why I said try to take it day by day or you will become exhausted with stress.
Hi Maithalouni. I really really sympathise with your position - and that of your mom of course. I know it probably isn't what you want to hear, but these are classic symptoms of an injury like your moms. While our brains adjust to what has happened they can cause us to act in all sorts of funny ways - even self-destructive ways. And 3 weeks really isn't very long to give for recovery from this sort of thing. It must be hugely frustrating for all of you. But things will improve in time, I'm sure. Just try to be patient and aim for small improvements each day/week. Best wishes to you all.
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