Hi, first time poster here in a world completely new to me.
Just under 2 weeks ago my dad had a large ICH stroke. He’s doing ok and has been moved to a less acute bay, with rehabilitation starting. He has no movement on his right side and very little speech, mainly just yes, no or ok. Over the last few days he has been more awake during our visits and I’m worried about how bored he must be getting during the day. I know he will be sleeping and resting and he is having physio etc but the lack of mental stimulation must be impacting his already low mood. We bought him a small portable radio with really easy buttons but when we gave it to him today he wasn’t keen to listen to it. I will try again tomorrow because I think he was more tired today. We asked if he wanted any magazines to flick through but he said no. They have put a mit on his left hand to stop him pulling out his feeding tube but that doesn’t seem to always be on, which then allows the use of his strong hand.
Does anyone have any other suggestions of what we can offer him? Most other patients on his wards seem to have nothing with them and they must get so bored and down. I hate the thought of him being there all day with nothing to do but for our short 2 hour visiting window.
I also want to understand what is usual in terms of amount/time of therapy (physio, SALT etc) offered each day. I know our NHS is a wonderful blessing but I do also know that it varies and I want to make sure I’m getting him everything he should have and needs.
Any other advice gratefully received. We’re all still in complete shock to be honest and adjusting to this new world. Prior to this my dad, 74, was fit and healthy and it’s so hard to see him so changed.
Many thanks in advance.
@Poppy1 So sorry about your dad. These are hard times for everyone concerned. I’m writing from the USA where just about every hospital has a Television in all the rooms for patients. Is that not the case for you? I had one and it was right over my bedside. It made things a lot more bearable. As an in-patient in therapy, the facility there also had TVs.
Is there any way you could provide a laptop for him.? You could download movies and Television shows to it?
Wishing you the best and prayers for healing. Hopefully our kind members here will have more ideas.
Derek
as @Outlander has said welcome and sorry. ANd don;t you be sorry
You really are not alone and great that you have reached out here because you will find lots of help I hope. and empathy and you can rant as much as you want!!! I do!!
The first few weeks / months are going to be a proper fog for him probably I’m afraid.
Please have a look at this if you want:
I just want to say welcome and have a look at this if you feel up to it:
So sorry you’re on this journey. I am 10 months in from 3 ischemic strokes and it is hard for my friends and family and me!!. but there are good and bad days!
Keep talking to us
Kieran
Here is a picture of some polar bears to cheer you up!!
I’m not giving you medical advice but my suggestion is to write all these things down in a note book and see what he is struggling with and what he responds to and vice versa and then discuss with the medical professionals. You have a lot of things going on and must feel overwhelmed.
Sorry also ask if he can understand what he wants or needs and maybe write it down with hid good hand?
Make sure you also take time for yourself to try (I know I know) to relax a bit because you won’t do him any good by burning out.
I will be thinking of you and your family and of course your father.
Hi @Poppy1 so sorry for your reason for joining us on the forum but you are so welcome.
Your dad is only 2 weeks into his recovery so he’s basically only going to have the attention span of a 2yr old just now! 5 minutes here, 10 minutes there, an hour’s nap then meal time, medication, visiting time, nap time again. He’s probably getting all the stimulation his brain can endure between his nursing care, physio and meals and visiting time. His brain has been through the ringer and is a jumbled mess basically. At least that’s how I recall my time in hospital, and I was in only 5 days, but I wasn’t much different once home.
Unfortunately you can’t push him, his brain just won’t allow anyone to! You need to give him a couple more weeks yet. You may feel he’s being stubborn, may even be afraid he’s giving up on life, but believe me he is not. This is just his brain taking control over his healing, inside his head where outsiders can’t see what the heck is going on. And it just can’t cope with over stimulation, that’s more than likely to give him a banging headache and risky.
That kind of healing and repair is exhausting, it’s draining. He can’t do what you want him to do, not yet, all being well it will come on gradually over the next weeks and months. Patience and tolerance are your keys, by all means bring him whatever you think might interests him, his favourites but don’t worry too much if he doesn’t use them yet, it will come in time.
In the mean time you take care of you because he’s going to need you when he comes home.
give him some time and sorry if I asked you to push him… Just ask if he wants to write something if not who cares. He’ll improve no doubt he was fit and healthty so he will fight I’m sure sure
I had a stroke about eighteen months ago. I was 75 years old when I was admitted into hospital.
The whole event knocked me for six, I was in hospital for two months and hadn’t made much progress by the time I was sent home. After another two months at home not much had changed. I had heard that by that point I had achieved about as much recovery as was likely to occur. Needless to say this prospect left me depressed, feeling hopeless and helpless.
I was paralysed down my right side, couldn’t walk as a result, and was pretty much reliant on having things done for me. I could talk okay and bent the ear of any who would listen. (No change there then!)
At about six months after it started I suddenly decided to try and, by some miracle, was able to walk a few steps. I have slowly made improvements since that time and I am optimistic about my future. Now I’m settled in for the long haul.
What I am trying to say is that what looked quite hopeless for some time did begin to improve. I don’t think one gets as much attention when no longer of working age and if you want to make progress you have to find your own way.
This forum has demonstrated through the stories of others just what is possible. It has been a good point of reference for me. Progress varies considerably from one example to another, there are both tortoises and hares. We are very similar in some ways yet at the same time very different.
It took me quite a while to get motivated and I still have ups and downs. These days I try to rest on the downs and get stuff done on the ups.
You both have a long journey together ahead of you. Take care of one another, but make sure you take care of yourself too. Be patient and times will get brighter.
Keep on keepin’ on
I must add also that you are very welcome here. You are another person affected by stroke
It is just as unsettling and difficult to deal with for all of us.
This forum can be a very useful, at times interesting and amusing place to visit.
It is good to share experiences.
Don’t be a stranger.
@Poppy1 Hi and welcome.
Your dad probably doesn’t know what he wants at the moment, but you can be sure he’ll know that he has your love and that you are trying to help. My wife was there every day for me and offered to bring me books, mags etc but I really didn’t want them. The biggest help for me was having her visit me and having my phone, so I could communicate with friends outside and listen to music on headphones, which enabled me to blank out the noise on the ward.
The physios will be onto your dad as much as they can.
It’s very early days for him and he will take time to adjust to what’s happened, but he will let you know if he needs anything. In the meantime try to give him space for thought and just let him know that you are there for him.
Hello @Poppy1
Sorry you’ve had cause to join us. Now you are here as you may have gathered from the above you’ll get a warm welcome and lots of advice from experienced and empathetic people .
I’ll echo most of the things Bobby and emerald have said. But I’ll emphasise that the recovery time scales are months quarters and years not weeks. I’m 3 years post My speech is slightly affected, I can walk again I could just about hobble at discharge my right hand doesn’t work but my right arm has come on a long way, fatigue is up and down. How much fatigue dad gets will be a very big factor
I’ll also emphasise that during my time in hospital I hated it when other people turn the radio or television on. I could not deal with it. conversation the last thing I wanted. There was no way I wanted to read a magazine. Laying on my bed appearing to stare out the window was most helpful. My wife imagined it as little men probably a Disney cartoon working away on repairs - apparently I didn’t know but they have crochet hooks!
I suppose that makes sense if they having to put back together brain networks
It’s important that your family and you understand to only push very generally and infrequently. Don’t push more If the stimulus isn’t immediately accepted - It will be when he’s ready which I’m going to guess will be 3, 6 or 12 months time.
two reasons it’ll be counterproductive for your dad and it will be disheartening and wearing for you - you all have to come to terms with the fact that as a foundation or linchpins you are going to have to look after yourselves - because caring for a stroke survivor who has any externally detectable or internally invisible deficits is a very very long haul In most cases
Read
The welcome Post Kieran pointed you too tells you how to search. There are many other carers on here who have related the journey over weeks and months see the recent stream of posts
for a similar journey
Ask your questions as time unfolds but recognise that you have to let it unfold.
As an aside yes are NHS is stretched and the chronic care side in the experience of many is pitiful but the acute care also in the experience of many is better than adequate. Expect there to be a big gap when he gets discharged to home. That is where you will need to put your energies into
Hi @Poppy1 as the others have echoed, I am sorry you find yourself here.
Simon has linked my recent post above - I am in a similar situation to you, caring for a parent who has recently had a stroke.
4 weeks in and Mum is still in hospital and like your Dad, out of the acute unit and on to a main stroke ward.
My mum was previously very engaged online, does a lot of genealogy research and catching up with friends, reading etc.
she is currently totally uninterested in anything like that, not even listening to a book or the radio.
I’ve realised that although it looks and sounds like my mum, her brain currently isn’t processing like my mum. She just doesn’t need that stimulation right now. It’s only the last two days that she’s actually said she’s bored and I think that’s because she is starting to put together fully the impact of what has happened. Her mind is much more settled now and I think she is now beginning to understand the concept of time again.
It’s distressing to see and hard to get your head round, but I can only say from our journey, the brain seems so busy remapping and repairing that they just don’t need that outside stimulus at the moment.
I have found this forum just amazing - the stroke survivors give a brilliant insight to how they feel through this journey and there are also lots of carers on here who can share insights and help you realise that you are not alone in this. X
Just a thought based on something that made a difference to me: Get him some nice oils so he can connect with the smells of nature, and be “transported” out of that hospital… Lavender is a classic. Someone picked some sage when I was in hospital ; bliss. I think I had a few different DoTerre scents… but Neil’s Yard will do fine. Peppermint is refreshing even the nurse was impressed.
It’s so important to realise that, it will make such a difference to the journey. Grab every chance to communicate and to share.
That feeling of loneliness can be soul destroying.
Thank everyone for your responses. They have helped me a lot and I understand better that he is still very much in the early healing phase and it’s right for him to just rest. I suppose there is the natural tendency to want to do something, help in some way, but for now he just needs rest.
@Poppy1
There’s nothing wrong with wishing you could do something about it, but it’s not a weight to carry around.
He will rest then he’ll get dissatisfied and try to get things done, it’ll wear him out and he’ll have to rest again. He will probably have to cope with frustration, anger and fear, which will also be draining, but he will appreciate your love and maybe you can find something you can laugh about together which will lighten the load for both of you.
Other times it will not be so straight forward, but as time goes by you can make it better.
I wish you all the best as does everyone here, of that I am sure.
@Poppy1 just wanted to say hi & welcome. Sorry your dad has had a stroke. Hopefully you’ll get plenty of support here.
I echo what others have said re your dad needing plenty of rest right now. I was only discussing with my hubby today how i wasn’t allowed any visitors when i had my stroke (covid) & whilst it would have been lovely to see people I probably benefitted from not seeing them as I could rest. I did have lots of magazines dropped off for me but all i did was turn the pages over. Nothing went in at all.
I think I only had about 10 mins of physio a day in hospital. But to be fair i couldn’t have done any more. Fatigue was a massive issue for me. It’s important for your dad to get some physio but equally not to overdo it. It’s one big balancing act & takes ages to work out the right balance for you.
You could just leave a couple of magazines for him in case he does become tempted & I’m sure they’ll come in later if he doesn’t want them right now.
Look after yourself too. It’s equally as hard gor the family & you’ll be focussing so hard on your dad you’ll likely neglect yourself.
Personally speaking, I think the carers have the hardest time of all in the beginning. Because they are always on the outside looking in and don’t understand what the heck is going on inside our stroke brains or what a stroke entails…the doctors don’t fully understand either. But there’s an awful lot of major repair work going on in there and it can’t be rushed…bit like the road works we see everywhere
Aside from the physical disabilities, I couldn’t speak, couldn’t write, could use my phone let alone a radio or tv. I tried to send a text to my sister to let her know I was fine. Apparently I did, just about, manage to send her a dot (a full stop) She was over the moon with that, because I was trying to communicate, she just didn’t know what but she’d take a dot any day It was a lot of hard work and tears of frustration though!
Don’t ever forget though, just because he can’t communicate, is just staring off into space or got his eyes closed, doesn’t mean he is not fully conscious and alert to his surroundings and what is being said! A nurse made that stupid mistake on my ward…just the once
I’m 61 and nearly 3yrs post stroke now, I walk, talk…after a fashion, go to the gym, drive, all independently now. I do have slight Aphasia but I am now understandable
It is true, @Bobbi , that more elderly people often times don’t get as much attention as younger people. We were told this flat-out when my mother had her stroke at 70. They said that older people are not as likely to make progress after their strokes. Well, my mother ended up walking like a normal person after 6-8 months. Her balance and reflexes were fantastic, too. My Dad and I worked with her every day. My mother was apathetic, which didn’t always help things. I will say, though, that some of my mother’s improvements were spontaneous and sporadic, but she really did work hard to get her walking back. Her arm came back to about 100%, and her hand was 80% recovered, except for some weakness and a little tingling in her fingers.
I am saying all the above, to make the point that there is no way of knowing exactly how well someone will recover after a stroke. The machine-like predictions of physios and doctors are often very wrong. They basically said that my mother would probably never walk again. How wrong they were! In fact, she walked as well as any other 71-year old (even better with great balance).
But, as you all know, my mother’s emotional state declined terribly over time. She also became irrational in the second year after her stroke. They never talked to us about emotional issues, etc. Therapy was all physical and speech disabilities, which she really had neither of after 6-8 months (slight weakness issues with hand).
@Matthew1798
I agree that there is more to be learned about stroke and disability, far more than the little that is already known.
Support can make a difference but we are very much in a trial and error situation with no guarantees of which is a good direction to take.
You pays your money and takes your chance.
It’s always good to share and I value your opinion and experience.
It was a lot of hard work and tears of frustration though!
