Hi everyone, our mum suffered a stroke 2 weeks ago on the right side of her brain but recovered brilliantly and we got her home after a week in hospital. She has since suffered a 2nd stroke on the right and is now 10 days in with very little eye opening and we can’t tell if there is recognition there. The hospital have advised the damaged is localised but deep and want to move to end of life care. We have held them off due to her opening her eyes, some brow wiping and scratching her nose but I’ve read that these can be reactionary not purposefully. We are due to speak to the consultant tomorrow and I wondered if anyone had gone through similar and how on earth one decides if we have waited long enough for any improvement. Mum is 79 and I know she wouldn’t want to live like this but how does anyone gauge how much she might recover at this stage. Thank you in advance for any suggestions as we feel so stuck between a rock and hard place.
Hi @Jules3 & welcome to the community. Sorry to hear of your mum’s strokes & the situation you now find yourselves in.
I can’t help with your specific issue but I will tag in @ManjiB who had a similar situation with his mum.
There is no way of telling how much she might recover at this stage. It is different for everyone & depends a lot on what type & severity of the stroke.
You know your mum best & after speaking with the consultant I suspect you will know what to do.
Nice to meet you, albeit in difficult circumstances.
Thank you Ann @Mrs5K for the tag.
Firstly, I agree with Ann with the comments she has already made.
The above is absolutely true. That said, let us speak about what you might do.
Jules - From what I can tell, your Mum has had a second stroke within a month? She recovered from the first one and was at home, but then had a second which has done more localised damage and the doctors are suggesting end of life care.
Based on the above, I can compare this with what happened to Mum. Mum had her stroke aged 89 and her first stroke was severe, possibly similar to your Mum’s second stroke. In Mum’s case, the clot buster did not work and an attempt to remove the clot in the artery at a specialist hospital nearby also did not work. So from the medical team’s perspective, this was it. Mum was then put into palliative care which is effectively end-of-life care from the go.
For us (family) this was unknown territory from the medical side of things and we were just listening to what we were being told. What was important for us was the personal side of things. Prior to the stroke, when Mum was well we had already discussed with her or she had shared with us how she would like to be cared for in the event of a medical incident. This was only family discussion and there was no LPA (Lasting Power of Attorney) or anything in place. I mention this because if your Mum has an LPA then this may affect what happens next.
Once Mum was put into ACU (Acute Care Unit) after the doctors had concluded there was nothing more they could do for her, we (the family) were spending time with Mum and trying to engage with her. Mum was fighting and we could see that - as Ann said in her message, “you know your Mum best” and so we just continued trying to get her to communicate how she felt and what she wanted to do.
The stroke had left her right side paralysed and aphasiac. So we tried various techniques such as blink your eye once for yes and twice for no or squeeze my had (left hand was OK). We continued with this and we just stayed with her and let her know we were there for us and we would do as she wished.
So we asked her direct questions and also told her that it is her choice what happens next. If she wants to fight for her life then we will support or and if she wants to go and meet her maker we will support her. Absolutely her wish and her choice. We just needed to know what she wanted.
Mum indicated to us, that she wanted to carry on. She was not ready to meet her maker and she wants to live. So that’s what we told the doctors. We explained as above, that we had discussed her wishes and what she is now telling us. The doctors were not very supportive and did nothing to help - Mum was on an IV drip and they just had her on continuous obs (monitoring).
She fought through and stabilised enough to be taken out of ICU and into the regular stroke ward. At this stage we were still ignorant and trusted the doctors but we were wrong to do so. I can go into details later if required because I would like to keep this short to help you.
Bottom line.
We refused to accept that Mum should go on end of life care and we requested normal care for her.
We did this because it was what Mum wanted and this was established as above i.e. from pre-stroke discussions on “getting old” and subsequent communications from the hospital bed whilst in ICU
That’s it in a nutshell.
If this is her wish then you have a guideline. When she was home after the first stroke, how was she? You say she recovered brilliantly. Were you able to talk about “life after stroke” and how she felt about that?
This is also tricky.
Mum was no quitter and she was prepared to fight “literally to the death” and so for us, this was not something to think about. You keep going and supporting as long as she needs it. That’s what she did and Mum came home and survived the stroke and made an amazing recovery.
I hope this helps, but if you have any more questions I will happily share our experiences.
Alternatively, Mum’s story is pretty well documented on this forum and you can read it in your own time.
If you are able to get your Mum to communicate with you in any way then this will help you move forward. Otherwise, my guess is once the doctors decide that they want to move to end of life care they will pretty much steer you in the direction and they will steer hard.
Just so you know, we refused to accept the doctors’ diagnosis’ and prognosis’ all the way and we challenged them to the point where they might have thought us nuisances but it our Mum we were defending (we had to advocate for her and that also made it challenging).
Have a think and do get back to me.
I am happy to chat privately via messages if you don’t want to continue in the public forum as I can imagine it might be a difficult and sensitive time.
Thank you so much for such a detailed response and I’m so sorry you had to battle so hard. We’ll see where tomorrow’s conversation goes and then yes I will message you direct and thanks again.
Though we are all different and it very much depends on the individual and a number of different factors, some of which are outside our control, I should just like to mention Mum was 89 years old when she had her stroke and she spent one month on an IV drip with no food or water by mouth during this time.
If you feel strongly about anything or have a different opinion to the consultant, do stand your ground and if you are advocating for your Mum which I expect you will be then it is important they (consultant/stroke team) do not dismiss your feedback. If you are confident you are able to speak on behalf of Mum then this must be clear for the consultant/stroke team.
We were told we had unrealistic expectations and we overheard negative comments about us behind our backs, but we stood our ground because we knew what Mum wanted and what she would have said if she was speaking for herself.
At the same time, we must also be realistic as emotions do come into this and we can become distracted.
ManjiB, I really admire both what you have done for your Mum, and what she has done for herself. You sharing this information is a great asset to the Forum.
Thanks @Dexter. Mum is absolutely the most amazing person and we are happy to share our experiences in the hope that it may help others who may find themselves in a similar situation.
Mum’s philosophy is simple and she just loves helping people and people love being helped by here, although this was more the case before the stroke. Post-stroke things (relationships) change and it is no different for us, and perhaps this makes it even more important for us to share our experiences with others.
We can put it out there, whether others agree or not, wish to follow it or not is up to them. All we can say is things might have been different if we knew then what we know now. This is something Mum has always believed in and she made sure that if ever she could help it, no one should have to reinvent the wheel. A truly selfless person
Thanks again ManjiB, your sharing really helps and your family sound amazing. I totally agree what you have shared will help so many people. We have been told today that mum stroke is a total anterior circulation stroke which explains why we have struggled to communicate with her in any meaningful way. We have tried asking questions and asking for hand squeezes, head moving etc but there has been no real interpretation of any response. The hand squeezes are random and the eye contact isn’t sustained. We have asked for more details about based on their experience the levels of recovery possible but I do worry they don’t have those answers. We are staying in a wait and see window for now so as long as mum is stable and not in any discomfort we will hold off any decisions for now.
Welcome to the community, I’m sorry to hear about your mum and situation you and you’re family are in. I’m pleased you’ve found this community though and I hope some of the responses so far have been helpful to you as you navigate through this difficult time.
Don’t forget, you can also call our Stroke Support Helpline:0303 3033 100 for support too and if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
You are where we were when Mum had her stroke. She was in bed for a month and she was on an IV drip. Essentially she was on “palliative care” - we didn’t think of it as end-of-life because we didn’t believe that’s where we were. That said, we were aware that Mum may not make it and so it was a matter of being there for her, making sure she was well looked after and remained comfortable. Mum went on to “surprise” the consultant(s) and after a period of three months or so in hospital, she was discharged to be cared for at home.
Your Mum will effectively make the decision and you will know (she will let you know). I saw this happen during the three months Mum was in hospital i.e. I saw other patients dealing with the same thing and we spoke to other families who were in the same situation as us.
Hello @Jules3 I’m Phil, a stroke survivor from Essex. I don’t have any experience of the world you are currently navigating through (my stroke and after stroke experience was entirely different), but I am totally inspired by the thoughts and advice @ManjiB is offering. This has actually caused me to shed a tear, not in sadness but a very positive emotion. It shows how we are all on a journey we didn’t want to take but that the community support here is so invaluable and makes it a little less daunting at the most difficult of times.
I truly send my best wishes to you and hope you are able to convey these thoughts to Mum and the rest of your family. You may feel incredibly isolated, overwhelmed, sad and any number of other things but we are all here to support each other and, if I can in any way, please reach out.
Thank you your kind messages, we had another conversation with the consultant yesterday and their narrative is still to move to comfort measures, ie remove her feeding tube and let nature take its course. They haven’t shifted from this perspective since day 2 and while they are acknowledging we are seeing mum open her eyes and wipe her brow, lips etc it isn’t changing how they are speaking to us. What I see is a brain trying to wake up even if its to say I’ve had enough. Maybe thats selfish of me to want her to tell me what to do, but I just cannot at the minute utter the words that I agree to what they are suggesting. We are holding them off for another week by asking for the consultant to assess her while we are there, as they keep recording no change. After that we will insist on a 2nd opinion. I dont want to fight the system at mum’s expense and the ward have been amazing in so many ways but it does feel like a battle. Lots of love to everyone going through similer xx
I’m so sorry your Mum has had a stroke and that you and your family are working to find the right way forward. You’ve probably already done some research on the type of stroke your Mum had but here is a link to some information that might be useful, especially around recovery timelines for TACS.
Thank you so much for this, we have done some research but this is actually really helpful. Did the hospital provide this or did you find it yourselves? xxx
It is hard to describe the position you find yourself in. I can try to comment on some of the things in your update.
Just going by the above and not having been with your Mum, it seems to me that your Mum is considered stable but she is not making progress or showing potential to recover. The consultant and his/her team will base this on their experience of dealing with patients in this/similar conditions. That is not to say it is totally appropriate for your Mum, but it is based on their experience and their “best practices”. Ultimately, they are required to act in the best interest of the patient as per their medical/professional guidelines. For us lay people or next of kin of our loved one, this might be hard to understand or accept because we are emotionally attached.
It is not selfish and it is totally understandable. I am not sure how much time you are able to spend with your Mum but in order to get the answer you seek, you may have to stay with her for some time. If you are doing this on your own this can be very hard on you as you get tired both emotionally and physically. Ideally, you might want to help you whilst you stay with Mum and try to help her to help you decide. In our case, both myself and my sister took turns to stay with Mum and we just trying to engage with her when she herself was able - she spent a lot of time sleeping, because her brain was trying to repair itself.
The communication windows might be small.
So whilst Mum is comfortable we let her be - her brain is still repairing itself. If your Mum is doing the same then there is no reason why she cannot be allowed to carry on as she is. Mum was on an IV drip for one month but she had made communications with us and we knew (or thought we new) what she wanted and so we supported her as best as we could.
Holding off is fine as per the previous comment. If Mum shows signs of improvement that is a bonus, but even if she remains stable then there is no reason why you cannot hold on because recovery takes time and it depends on the individual. I expect Mum is being monitored round the clock (obs) and so if these are showing stability then this is your case to support continuing to look after her.
Then it becomes a question of how long do you wait?
This I believe is where the consultant is coming from. They may have concluded your Mum is not going to improve from her current baseline. And if she is not going to improve, they are looking at her quality of life and this is the sort of language/terminology they might start using as time passes. Seeking a second opinion is there as an option, and you may well wish to exercise it if you feel strongly that the consultant hasn’t understood the “true” condition of your Mum and her potential for recovery.
This is a very valid and reasoned statement. The key is “at Mum’s expense”. If you feel Mum may have given it her best and she may wish to go, are we then doing what we are doing for selfish reasons. It’s hard to let a loved one go and I think Mum’s are possibly the hardest.
But we really do have to think if what we are doing is actually in the best interest of Mum and whether this is something she would want if she was able to speak for herself right now.
Yes, we had discussions in the past and we talked about how we would want to live or or not when the time came, but that was then and this is now. Things are different now. When we were planning ahead we were not actually where we are now, lying in bed, possibly looking at losing some or most of our independence etc.
As advocates, which is effectively what you are now, it becomes difficult and you can try to find some guidance and ideally that would be your Mum making her wishes known to you.
This may help you or not and I appreciate whilst there similarities between your Mum and my Mum, each case is unique and we do have to try to work as best as we can with the information we have and support we have.
Your Mums story is the same as mine except I have not had a second stroke (yet) although the thought of having one is on my mind all the time. Reading your Mum went through it all again, was reading my worst nightmare.
Unfortunately you cant predict when a stroke will happen, you cant prepare for it. I cant give you any help with your decision, but I admire you fighting for her, she is lucky to have you in her corner, and eventhough she cant tell you, inside she knows! Good luck
I’m sorry to read about your Mum, you’ve already had great advice.
Just wanted to say well done for not allowing the doctors to write your mother off never underestimate the body’s ability to heal. In time you and your family will figure out what’s best for your mum and your family. At the end of the day you’ll be the people living with the consequences, take your time with this decision.
I just wanted to say a few things.
When my husband had his stroke, I was really worried that he wasn’t eating or drinking for a few days, I really pushed for him to be allowed to eat and drink. I have since learned it’s easier for the body to heal in fasted state, so being on a drip isn’t the worst thing.
A good friend of mine was in a coma for a month or two after brain surgery. She is very clear that she understood everything, she just couldn’t speak or move, possibly they didn’t think to tell her squeezing the hand once for yes/twice for no.
never underestimate the body’s ability to heal. In time you and your family will figure out what’s best for your mum and your family. At the end of the day you’ll be the people living with the consequences, take your time with this decision.