Hello, I’m new here and looking for some advice if possible. My mum was admitted to hospital 3 weeks ago, initially she was extremely Confused and not making any sense, not recognising me ( I was someone impersonating her daughter) or her home, she went into hospital and after a CT scan it was found she had suffered an occipital stroke roughly 3 weeks before ( we had not noticed any changes in her behaviour but she did seem to think something had happened to her around that time. She has now been on the stroke ward in hospital for almost 3 weeks she suffered a second stroke last week and now the left and right occipital lobes have been badly affected she has little or no sight, is very confused and has hallucinations, she seems to be getting weaker and I am concerned that being in hospital for so long is starting to have a detrimental affect on her. All she wants to do is come home but in her current state I don’t know whether this is possible, she is unable to go to the toilet un aided and also needs to be spoon fed meals. I feel so heartbroken to see her looking so confused and sad do you think she may regain any sight and improve cognitively or is it likely that this is now her permanent state? Prior to this she has always been fit and healthy and at 93yrs old was still living independently in her own home so this is all very distressing. Thank you in advance for any help or advice x
Hi @Fran59 & welcome to the community. Sorry to hear of your mum’s strokes. It isn’t unusual for someone to have a stroke and not realize it at the time. Put it probably does explain some of your mom’s earlier symptoms. I can only speak from my own personal experience but I had an occipital lobe stroke too. I am somewhat younger than your mum and only one side was affected however it did bring vision issues in both my eyes. I didn’t however lose any sight but gained double vision and also saw lines in front of my eyes. What I can say though is that things did improve over time. The lines disappeared within a few months. My double vision remains but is corrected by prisms. It is difficult for any of us to say for certain whether your mum will regain any Vision or not but most people do make some progress given time. Time though often has to be measured in months not days or weeks so you should be prepared for it to take a while.
People who experience sight loss can often have hallucinations. There is a condition called Charles Bonnet syndrome which it may be worth you having a look at.
Being in hospital probably is affecting how your mum is as they’re not the best places to be. Maybe you should speak to someone about getting an Occupational therapy assessment done as they can advise on any aids and adaptations that your mum might need to enable her to go home safely. That should probably include a care package.
Best wishes
Ann
Hello @Fran59 - I don’t know if this will help you or not but I will offer my thoughts.
Though I am not familiar with the occipital stroke and its effects, I feel you and your Mum in a difficult situation because of her age. I say this because my Mum had her stroke when she was 89 years old and to be fair her stroke was possibly much more severe in terms of the damage it did as it left Mum aphasiac and right side paralysed.
My thoughts, based on our experience is that the help you may get might be “biased” i.e. ageist. I am sorry to have to say this but I feel I must say it as it was for us and so you may be better prepared than we were. I really hope your Mum does not get discriminated against on the grounds of age, but this may happen even if it sub-consciously on the part of the stroke team.
In case it helps, I agree that your Mum may well be better off at home - this is what we were told but in our case it was more because they wanted the bed and they felt there was nothing they could do for Mum. For that reason, please check with the stroke team how they feel about her condition and what they feel they can do for her.
Clearly, from what you say, she has care needs i.e. help with toileting and eating and if she was to be taken home, you would need suitable equipment and carers to help her.
Please get her assessed for the care needs to see if she can be taken home and be cared for safely - the stroke team will be best placed to advice.
You know your Mum better than most and also depending on how she herself feels, you can try and work out what’s best for her.
I hope this helps and I wish you and your Mum all the best.
Ann @mrs5K has given information based on her experience which I am sure will help you as she is able to relate to the occipital stroke. If you have any further specific questions, please feel free to ask. This forum and its members are very supportive.
Namaste|
Thank you so much for getting back to me and for your very helpful advice. Reassuring to hear that you have been able to regain some of your sight, I am hoping that this may be the case for my mum but because of her age I’m conscious that time is not on our side!
Did you have your sight tested by an ophthalmologist whilst in hospital?
Many thanks again for taking the time to respond to me.
Thank you very much for your response and very helpful advice. I agree that there is an element of age bias in the hospital and I am now thinking that they will be keen to move my mum out because they need the bed so your reply came as no surprise. I have a meeting with health care team tomorrow to discuss assessment for discharge- can I ask whether your mum came home or went into a care home?
Thank you again for responding I really appreciate it.
Hi @Fran59 I had a some very basic cognitive tests in hospital which did test my eyes a bit however it was only after I left hospital that I was referred to ophthalmology so it was a few months before I had my eyes tested. Once I saw ophthalmology they gave me eye exercises to do.
Thank you so much. I wish you well with your continued recovery.
It was Mum’s wish to be cared for at home - this was something we had discussed before she had her stroke, a bit like her retirement planning if you like.
The hospital consultant thought it was not a good idea for us to take her home due to the severity of her stroke which had left her double carer dependent for all her needs and the consultants did not think there was much chance of recovery or improvement if any. She was double carer dependent and essentially bed bound, but with help from carers she could sit out in a riser recliner chair for a short period of time, but always needed carers to move her etc.
So what we did was “against” hospital advice, but they just wanted the bed and so they were willing to “entertain” us and so Mum was brought home.
However, a word of caution.
They did not expect Mum to recover and so whilst they allowed to be taken home, it was with basic/minimal equipment and no necessary home adaptations and so for the first six to none months Mum was essentially stuck in her room being moved from bed to chair etc. We couldn’t even take her out as the home was not adapted and in fact the door was not wide enough to take her out in a wheel chair. So things were very bad from that point of view, but we felt she was still better off at home rather than in a care home.
I should also make clear at this point that we had double up care (2 carers 4 times a day) and myself and my sister were carers for Mum 24/7. Essentially Mum was cared for by myself and my sister providing round the clock care. The agency carers were often more trouble than they were worth because they simply were not trained for the type of care Mum needed (neither were we, but we had to learn on the job).
If you are going to care for Mum at home, you must understand the care needs and you must be satisfied that you can manage (assuming you are going to be the main carer). Outside carers cannot be relied upon and this has been our experience - we had to change agencies five times before we finally found a care agency who met minimum standard.
I don’t want to scare you off, and I think your Mum’s care needs are very different to those of my Mum and so caring for your Mum at home may be less challenging that it has been for us. The choice is your/your Mum’s and you have to decide. The hospital will respect your wish.
Best wishes.
Thank you, I know that my mum is just desperate to be at home and this is what I also want but as you say, the level of care she will need is going to be round the clock. I will see what they say care team say at the meeting today. Your mum was blessed to have you looking after her thank you for kindly advising me your words have beemost helpful.
Best wishes
Hi @Fran59
Welcome to the community, I’m sorry to hear about your mums stroke and the difficulties she is facing.
We have some information on vision problems after a stroke which may be helpful for you to have a read of. You may also want to give our **
Stroke Support Helpline:0303 3033 100** a call, they may be able to help with advice on the next steps and things to think about with regards to your mums care and discharge from hospital.
I hope you’ll also find this community helpful. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
Thank you very much , I am finding the website and forum extremely helpful.
Fran
I wish I had a health care team … didn’t know they existed! Wishing you well 
We have been very lucky with the care my mum has received on the NHS at Bournemouth Hospital.
@Fran59 … maybe I’ll move to bournemouth! Horrendous here 
Glad you were treated well 
