Hello I'm new here

Blood thinners are thde last thing you woud need if you've had a bleed. So its not something I research.

Hi. I too had a bleed and post-stroke seizures. My stroke was 2 years ago and also am on a lot of medication. The anti-seizure meds are for life! A bit depressing, but better than having seizures. Am now waiting to get to 1 year since my last seizure so that, hopefully, I can drive again. Want my independence back especially as I live out in the countryside! Still walking is good!

Sorry to be a bit slow to reply but I've only just seen your post. I didn't have a bleed but had 2 seizures.I'm on medication for the stroke and the seizures. I've given up my driving licence. I walk a lot too with my husband. In the lockdown I find email and zoom very helpful. Hilary

Hi I'm also new to the group , my 76 year old mum is 9 weeks in hospital with a right middle Cerebral Artery Stroke, mums left side is extremely dence no movement at all , mum can not balance and they say shes had massive brain damage causing no capacity regarding her insight.

I have been told prognosis is not good she will need nursing care she will need hoists support chair and she will be a invalid. 

Its been horrendous and with covid adding to the pressure's, Mum before the stroke had a tough time nursing my step dad with cancer trying to sell her home and other pressure's , my step Dad  passed  away 17 months ago ,the house is still for sale and poor mum thinks my step dad is alive ,she was seeing him in the general hospital but since moving to the community hospital he's gone she doesn't  see , shes frantic with worry she says he's left her  , she asking for us to find him she so frantic, im so concerned for my mums mental health she getting worse daily , in the general hospital they kept telling her that her husband was dead , which made things worse she felt they were trying to make out she was mental, and playing games with her  to her they are the enemy .mum is getting worse by the day shes phoning family and friends asking us to find him and why is he doing this .mum is refusing any physio and they are saying physio won't make a difference. 

Mum before the stroke was grieving for my step dad,  but she was trying so hard live a life without him , she lived independently she drove was amazing cook and was always in control, im not sure whats ahead for us and im so worried about my poor mum she's suffering so much.

I don't feel there's much support and not sure what I can do .

 

Deanna, Sorry to hear of your mum's stroke. These are very early days, so your mum is still suffering the after effects of the stroke. Strokes vary and doctors tend to come out with a worst case scenario. The brain is a complex and wonderful thing and can rewire itself. Hallucinations and delusions are fairly common after stroke so try to calm her anxieties about your stepdad and these might ease too.

Support after stroke varies from area to area. You might want to ask her gp what support is available to her, but please phone the Stroke Association helpline. They will give you any information you need. Take care of yourself as well. I wish you all the best.

Oh dear. What a sad situation for you to live with.

i know how hard it is to get ones thoughts together. I would not want to be told anything untrue, so the staff are, in my opinion, right to tell her the truth.

our brains are quite remarkable and can repair itself given time. So never give up.

no two strokes are the same.

best wishes

colin

Hi Deana, it’s a very difficult time for you and mum. In my experience as a stroke sufferer, a huge burden is placed on the carer and you become the person who deals with everything whilst mum is in a jumble. The practical words I can offer you are: 

Look at the leaflets on this site for help at understanding the stroke treatment process at the hospital where mum is. There is a leaflet called Stroke Recovery which explains the process and allows you to feel like you may know a bit about what treatment/ therapy mum should be accessing, and to push when things aren’t happening. 

As JJ has said, please ring the Stroke Association and talk to them for help and guidance about mums situation. 

Establish if mum has been allocated a social worker and make contact with them. 

Ask the hospital if mum has access to a clinical psychologist who can help with mums situation, this is KEY to mums recovery and to help with the stroke jumble and to calm mums turmoil. It’s bad enough dealing with the grief of bereavement but heap on top of that a major brain event, then even the strongest person would be reduced to a jumble. You are undoubtedly helping mum just by being there. I guess on your side there is a feeling of helplessness and not knowing what you can do, so if you can read a leaflet on a similar situation then you are taking a positive step. This may help you feel that you are doing something, which may in turn give you some positivity in what can be a dark situation. I wish you and mum all the very best. Pat

Hi Colin.  

The truth makes mum worse she really getting paranoid thinking the hospital staff are trying to make out they are playing mind games and insinuating shes mental,  shes hardy speaking to them because shes frightened she says the wrong thing and they are writing everything she says in a book , I had a most distressing phone call were she heard the doctor and nursing staff discussing her which im inclined to agree with because some of what mum said was correct,  but shes thinks they are putting her in to a mental hospital. 

Alls im trying to do is protect mum and the truth im afraid at this moment in time isn't. 

Im praying mums thoughts will become more Normal .

Sadly shes not going to handle the reality of her prognosis if the profession are correct ? 

Hi Patricia , 

Thank you for you advice,  believe me I haven't stopped for 9 weeks i could write a book .

I have myself assigned my mum to a social worker ive contact the stroke association, age concern,  her Gp and to be honest im going in circles , two hospitals have been involved and they both say the same , its not looking good and I need to find nursing homes. 

I mentioned today to the community hospital mum needs help with her mind,  they are saying 9 weeks is very early days .

I'm care taking my mother's house which is for sale and I've been told to go to court of protection. 

The only person my mother trusts atm is me and yes I feel helpless and a fraud because mum forgotten her beloved home is for sale and im making dissions regarding mums belongings and the beloved house . 

This is by far one of the worst thing I've ever been through and belive me me and my mum haven't had a easy time ? 

Thank you 

I pray but living in rural Wales and covid its not so easy .

Mum is also hard to manage and is  refusing any physio,  they are also saying they feel there's not much hope for improvement but they want to try. 

Its a sad situation ? 

Hi Deana, you are working incredibly hard and doing all the right things. I can really understand that it's the hardest thing you've ever had to do. Whilst not being an expert but sharing my own personal experience, I would challenge the hospital on a referral to a clinical psychologist. The right person would help mum to understand what has happened in terms of the stroke, and hopefully gain her trust to work through some of her anxious thinking and thoughts. All triggered by the stroke and the damage. In the first two weeks (out of10) I was seen by a psychologist so I really don't understand why 9 weeks is too early! Your mum needs help with her thinking now from a trained person. Many stroke sufferers have psychological problems after their strokes. The ones who can recognise this side effect and get some help have a better base to build a recovery from. Mum may not be able to recognise that she needs this help. I didn't and it made my recovery more difficult. I hope things get a bit better for you both, Pat

You make complete sense and I agree .mums GP to me doesn't seem interested in he  just tells me to support her which i am . We do live in a small coastal area of Wales mums in a community hospital who really aren't a stroke recovery hospital,the manager of the hospital has been more helpful than anyone ive delt with so far.i have asked her is mum psychotic the answer was no its the Brain damage from the stroke. Tomorrow I will try and phone the social worker and have a chat I feel I'm getting nowhere with the doctor its so frustrating. They are starting to do a assessment  i suppose in fairness mum only been in the community hospital 2 weeks tomorrow so they are still trying to understand my mum before and after the stroke. I'm grateful mum is in community hospital its half a hour from home the staff know us and she does seem better than how she was in the general hospital, tbf it certainly wasn't the best place for her . When mum isn't happy she refuses food and drink she lost 2 stones  but since the move she is eating small amounts. I realise this is going to be a long slow process. 

Hi Deana, you are doing all the right things for mum and I hope you are looking after yourself and have some support too. Many contributors on here have spoken about their mental health these have included, memory loss, hallucinations, anxiety, depression and other issues. As far as I can see, and from experience, these are normal reactions to a major event. Without a bit of help these unhelpful thoughts, for some people, start to dominate. That’s where some skilled help will be useful for mum to get back on track. There are as many opinions of GPs on here as there are contributors! They are general and don’t have the time or knowledge/experience to help. It’s good that you have the opportunity to raise mums situation with a social worker. Mums reaction to the stroke is normal but has left her with unhelpful thinking, which she needs help with before it gets worse. I lost weight after my stroke but I was a bit podgy, so dropping a few sizes was not a problem! I hope mum can settle a bit better which in turn will allow you to relax a bit. Best wishes Pat

Hello, my name is Diana and this is the first time I have been on a forum.  My husband, Martin, had a stroke 2 weeks ago.  He has recovered movement in his right leg, but not his arm yet.  His speech has returned to almost normal.  Can any one tell me at what stage he has to be before doctors begin to think about sending him home?

Hi Diana, I can't answer your question catergorically as I had only a mild stroke and went home quite soon. Another thing is all strokes are different. It sounds as if he needs more physio. Now your question is on the site I'm sure you will yet a better answer soon. Hilary

Hi Dianna, Two weeks is quite a short time, but he appears to be doing well. After my stroke, five years ago, I was on a stroke ward for 8 days, then a rehab ward for six weeks. 
 

Now that his recovery has started, physio will get him to stand and transfer to a chair. They will then want to get him walking and work on his weak arm and hand. He will then probably tackle stairs. Then it is usual for him to have a home visit before being discharged to see what adjustments need to be made before he is allowed home. Once ai got home I had to sleep downstairs for three weeks and got 6 weeks support and physio from the community stroke team. Not all health authorities provide this level of support though.

Do ask the hospital team about his progress and a possible discharge date.

Dear Diana

How long is a piece of string springs to mind. We are all different but I think the first priority is usually medical fitness. I suppose we can all only tell you of our own particular circumstances.  I was told I'd had quite a bad stroke (although I'm sure there aren't any good strokes). I was allowed home after eight weeks in hospital, being medically fit at that time. Despite intense physiotherapy I still couldn't walk and had no movement in my weak arm and hand (mine was left sided weakness, having had a right-sided stroke). Another factor when I was discharged on the 23rd March this year was that it was the very beginning of 'lockdown' and they needed the beds. I'm pleased to be able to say that I can now walk with the aid of a splint on my weak leg and a quad stick. However, I still cannot move my left arm but have some movement in my fingers (I'm told this is unusual in that movement usually returns to the arm from the shoulder - proximal to distal). My stroke was just over 10 months ago at the end of January this year.

As I'm sure everyone on this site will tell you, it's very slow progress and requires a lot of patience and also stamina, both the patient and carer.

Two weeks is a very short time in terms of stroke recovery and I'm sure when the time is right Martin will be allowed home. There are usually visits required to your home from an occupational therapist to assess if anything is required in terms of a stair rail perhaps, a commode, aids for bath or shower, etc and in some instances the patient is allowed home for a brief visit of a few hours. I would imagine this will all be relayed to you eventually when the time is right. 
 

When I'd been at home for about three months, I was lucky enough  to get some community physiotherapy and they got me walking.  However, that has come to end now since they say I've reached a plateau. I'm due to be reviewed shortly.

I do hope Martin continues to make good progress and that he'll soon be home with you. In the meantime, take care of yourself in readiness for his return.

with best wishes,

Anne S xxx

 

Dear Diana

there are two requirements :

1) the hospital doctor will decide when he is medically fit to go. This is often a lot sooner than we might imagine. It was day five for me.

2) the stroke team will decide when he is safe to go home. They will check how safe your home is (for him), arrange for some medical equipment such as grab rails etc, probably talk to you on the phone to see how you will cope. They will also decide when a care team might be available to visit him at home.

thats it.

i think they will help him to move a bit better. For me, i was asked to walk up six stairs, shave, shower and make my own breakfast.

every stroke is different. 
 

and this wretched pandemic must be an added difficulty.

i think i am the extreme case, i went home after five days. I live in a bungalow, with lowthresholds and the toilet two feet from  the bedroom. And the early release medical team were available immeditely. it took three months for my speech to become tolerable.

my neighbour in the hospital had been there for three months.

hopefully there is  a rehab ward where he can receive appropriate help.

do say hello to your hubby from me

best wishes

colin

 

Thank you so much Colin.  I think you must have been very fortunate, as my husband has been in hospital for 2 weeks.  He is regaining movement, but cannot get onto his feet without help, but can stand unaided.  Covid complicates the whole thing intolerably, no visiting for example, and no room in rehab as Covid dominates everything.  But thanks for the info - very helpful - and good luck yourself.   Diana

Hello Anne

It is so good to hear from someone with first hand experience, thank you so much for replying to me.

Covid is making the whole thing more difficult, I am sure.  Martin has been told they want to send him to rehab, but there is no room at present.  The proximity of Xmas confuses things, too!  I am printing out this response to deliver to him in hospital - no visits, of course, because of Covid, which makes it even more difficult for us both.

Good to hear you are making progress, but I can see from other replies that we are in for a long haul.  Thanks for your comments re myself.  I have to stay strong too!

Best wishes

Diana

 

CC