@Lily3 sending lots of positive thoughts your way & really hope things work out well for your mum. I agree with @DeAnn and everything she says so won’t repeat it.
Try and turn your anger into ways you can perhaps help your mum. A different sutuation but when my dad received a terminal diagnosis we were angry, upset, sad, disbelieving all in one go. This however didn’t help my dad at all nor did it help us or change anything. I quickly resolved to do everything I could to make what time my dad had left as memorable as possible…for him & for us. I wanted there to be no regrets when he eventually passed away.
I think the drs are just trying to prepare you for what might happen but that doesn’t mean it will or that by accepting it as a possibility that you’ve given up hope. Make the most of tye time you have with your mum, talk to her as if she can hear & understand everything. It might be just what she needs.
The MRI showed mum had another stroke but this time ischemic one . When they don’t know .
Mum first ever CT showed she had Cerebral amyloid angiopathy and they said to expect this but as humans we still don’t prepare for it .
Despite this dip mum had her eyes opened the longest (6 mintues) and looked rather aware !
Still no response to commands but I promise I will do all the above you and DeAnn said . X
Sorry to hear your m has had a 2nd stroke. That might go some way to explain her current level of awareness.
A positive that she opened her eyes for 6 minutes today. That sounds like a little bit of progress. Even though she isn’t responding to commands keep talking to her, squeezing her hand etc. We were told with my dad that he could still hear us even if there was no response.
I’d advise to keep well away from Google. We all do it but it always gives worst case & generalises too. Everyone is different & it’s best to just take one day at a time & see what happens.
One thing I learnt early on after my stroke is that patience is needed in bucket loads.
Still here with you. Slow responses, as my time is quite different here, but no less caring about how you and your family are faring.
Hang in there, dear. Ann @Mrs. 5K is correct in advising you to keep treating mom as if she is hearing you. Keep talking to her and holding her hand, perhaps massage her feet and legs a bit, if there isn’t reason not to. My family and friends, once they were allowed would sit with me and hold my hand, pray ‘with’ me, sing my favorite songs, talk to each other just like we were gathering at a reunion. I could hear them much of the time, when I wasn’t deep in sleep, even when I was not responding. I loved all of it. I felt so very loved during that time, even through pain, fear, worry… I hope you feel the love from here.
My mum had a massive Hemorrhagic stroke 3 weeks ago and recently a ischemia one without even regaining consciousness.
It is hard watching them suffer and feeling so helpless.
It’s rich coming from me cos all I do on here is vent and be angry but take some heart and courage in all the positive signs your mom has shown so far . Please .
I’m not good at writing cos I’m alway blabbering tearing up when I’m on here or any time really .
As you know by now it’s all ups and downs , mainly downs so wait for the next up!
My mum’s infection markers went down and fevers stop so she they were planning to stop the antibiotic but last night she spiked to 39.7 .
They are baffled and think it’s prob the brain failing to regulate the body temperature but same time she should have done this in the early days so to be them they can’t understand what’s going on .
Anyone had unexplained temperatures and found the reason?
How do I tag people ? And I think I replied to the wrong thread earlier .
Not a doctor, remember, however, yes I had this issue as well. It was the MSSA. What they did at that time to help me was a) ice packs in strategic places b) fans my family brought in that run on batteries c) cultures of the MSSA to decide on a different strain of antibiotic.
I had 8 weeks of the new antibiotic intravenously, after having already had 4 weeks with the other. An infectious disease specialist team came to see me to determine all of this.
I hope this helps.
I will keep as close an eye as possible so I can see if there is anything I might be helpful with.
An escape pressure valve is what you need now so use it
As @DeAnn said we aren’t able to diagnose - especially at a distance but we can share our experience. Temperature change can be from damage to the hypothalamus and peripheral nervous system but can also be from inaffection and there are a few other causes so investigation is necessary
Apart from here up are you getting any other support? It seems that you might benefit and errors and family are often post overlooked
Use the sources of support that you can find including here
They said no to fans as it will spread infection ?
I still bought some cooling patches for her forehead despite them saying no . They were putting on wet tissues.
I did noticed her gown all wet under arm and noticed the ice packs .
I imagine mum burning up esp the head area. Before the storm she alway complained about feeling feverish, then hot and cold and this is is like the worst version of existing symptoms she lived with .
Just waiting to go see her now.
Hope you’re well as well as you can be . Much much love
They said it’s definitely something to do with the brain cos her infection markers aren’t coming down .
I’m gonna ask about the H thing you mentioned but I have an ugly feeling the second ischemia stroke just made it all worse as it’s in the central part.
Thank you for your reply and that little quip at the beginning; did make me chuckle.
I need to get some support to prove to work I’m not losing my mind and seeking all the resources available so I don’t get the sack for all my absences!
Having my own heart disease and other medical issues already has me in the red with work so they’ll do anything to get rid of me
Balancing bills and a possibly dying mother ? Oh life!
So much to deal with when one is least able to deal with it! But you will. One way or another, you will work it out. And as you do, I hope you will look back and see how very strong and capable you truly are. None of this is an easy feat, and I am guessing you have had some other not so easy to overcome issues in the past as well. Hang in there.
Possibly the hospital or one of the doctors can help with the ‘proof’ thing, or maybe your own GP. I have never had to show proof for an employer, so no experience with that.
I hope very soon there will be some more positives to be seen, heard or felt. Holding you in the light.
I just walked out of London hospital in anger cos my siblings and I couldn’t agree on this new decision we have to make for mum which is should the doctors re-intubate her if she fails after the extubation which will take place next week.
Because my mum will have massive deficit as the brain damage is so bad they are saying no to re-intubation as adding to her suffering plus of what she said that she wouldn’t want a life living like a stroke victim ( her Bil had a stroke and)
Is there anyone who can add hope to this intubation business ? Please.
I can’t give you hope I’m afraid. My Mum was in a similar position to yours in 2010 after 3 strokes. My brothers and I decided that my Mum would have hated to lose her dignity and we didn’t want her to see out her life in pain. She was an incredibly strong woman, loved her independence and on that basis we let her go. I realise the horrible position you find yourself in and I feel for you but are you thinking of her or yourself. Sorry if that is not what you want to hear and it is the hardest thing losing your Mum but you do find peace afterwards knowing they are in a better place and it enables you to move on. I know that’s what my Mum would have wanted. I hope I haven’t added to your troubles but this was my experience.
Re-intubating increases the risk of hypotension and hypoxia. So naturally, the weaker the patient the greater that risk is.
If the doctors have left it up to the family to decide, then there’s as much risk either way and non of it good for your mum if oxygen supply to the brain is reduced.
Your mum is not a game of tug of war, her children fighting over her life is not what she would want, is it!? Hasn’t she suffered enough for you all. I know you love your mum so very much but how much more do you want her to suffer for you until you are ready to accept. Some things are out of everyone’s hands, including the doctors now by the sounds of it. You all need to start thinking what is good for your mum now, what gives her peace, what gives her the least amount of suffering. And I’ll pray you find that peace for her
@Lily3 my heart goes out to you & your siblings. It’s an awful position to be in. You really do now need to make decisions based on what is best for your mum. That might not be the same as what you / your siblings want. If your mum would not want to go through all that then my advice is to spend your time with her saying all the things you want to to her & making the most of that time. You don’t want to have any regrets if the worst should happen but equally you don’t want your mum to come through it and know that you’ve been so angry and all falling out.
It is one of the most difficult things you’ll ever have to do and i hope you all find the strength to do what is right for your mum. Only you her family will know her wishes. You also don’t want the drs to make that decision for you which i guess they will if you can’t decide as a family.
Sending you all the strength you need at this time.
