Leaving Hospital After a Stroke

We know that for many stroke survivors and their families, the first few weeks after being discharged from the hospital can be a really difficult transition. We asked our community of stroke survivors and their families for their top advice for leaving hospital after a stroke.

1. Try not to worry if things feel different

Whilst nobody likes being in the hospital, there can be a sense of safety when you are surrounded by medical professionals and a routine – particularly if you have been in a rehab hospital. Hopefully, you will have some visits or appointments booked in after you leave the hospital – this will usually taper off.

It is really normal to struggle with adjusting to home-life. One of our members said:

“Home is great, but it is not how I imagined it would be. All of those times I laid there thinking “when I get home” and when I got there it wasn’t how I thought it was going to be”

This is a period of change for everyone in the household. Your life has changed since the last time you were home. You may feel anxious about having another stroke – this is very normal too and something that you should discuss with people you feel comfortable with.

If you require help with day to day tasks or personal care from your loved ones this can feel strange for them and you. This may be a dynamic that has never happened in your relationship before. This will take adjustment – try to keep communicating with each other – you will be learning together. At home you will be recovering not only physically and cognitively but also psychologically from the trauma of a major health event- this is not to be underestimated.

2. Don't fight resting

Almost a quarter of the responses we had about this time where about rest! Our members said:

“I wish I had listened to all the advice, rest, take your time etc. Maybe, if it was someone with lived experience, I might have done”

“Do not fight the need to sleep!!”

“Do not rush! Slow down.”

In fact, sleep is going to help your recovery so see this as part of your rehabilitation, studies show that sleep fosters neuroplasticity improving learning and memory.

Perhaps if you are reading this you may be supporting a stroke survivor. If so, encourage them to rest and don’t be surprised if they sleep a lot more than usual in the first few weeks or months after recovery.

3. Join a stroke community

As an organisation we know the importance of finding fellow survivors – it is the reason our charity began! Having a support network can help the whole family. Our members said:

“Do not worry when the hospital rushes to discharge you and you receive little support from the council. Try and find a local stroke support group to help you recover”

“Time heals, be kind to yourself, do not expect too much too soon, forgive others for their ignorance, seek support from others who understand (fellow survivors)”

“Listen to those who have been through it before you and make sure you join the Different Strokes Facebook group!”.”

4. Get to know and understand your limits

The effects of a stroke are different for everyone. As you return to parts of your pre-stroke life you will be learning what your new limits are. You may want to try and do as much as you did before, but please bear in mind that your recovery is on-going and its better to start slow and build up your capacity than to do too much and burnout. Our members said:

“Don’t think you can do what you could before- don’t overdo things!”

“Every stroke is different, and everyone recovers in different ways - which I’m finding out now myself!!”

“Don’t push too hard, rest after everything you do and don’t do too much at once. Even if you think you are okay, still rest, it is the most important thing for your recovery.”

5. Patience, patience, and more patience

Stroke recovery takes a lot of patience. Stroke recovery is a marathon and not a sprint. Our community encourages you to be patient with yourself and if you are supporting a survivor be patient with your loved one. They said:

“It takes so much longer than you think, but things will get better!”

“Do not worry if you don't feel you’re not recovering quickly. Time & patience & positive thoughts.”

“It is going to be a long hard battle, but it is worth it.”

6. Your mental health is a priority too

You have been through a life-changing traumatic event. This is the time to ask for help and to recognise that it is natural to feel anxious, sad, or scared. Many survivors and their families benefit from counselling after a stroke. Our community said:

“Please talk about how you are feeling- don’t bottle it up!”

“The one piece of advice I wish I'd been given was about my mental health. I wish I had known that rapid mental health decline can start several weeks after your stroke, because of your stroke and its possible effects - if happens to you there is help you can ask for."

“Ask for help when you need it. It is not a sign of weakness, and there’s nothing to be ashamed of.”

“Tell people how alone and scared you feel.”

You should be able to access psychological support through your stroke team or G.P. Many survivors really benefit from seeing a neuropsychologist. You can also access private therapy if you are in the financial situation to do so – you can search for therapists in your area through the BACP website.

7. You have to be pro-active in your own recovery

After discharge, a lot of survivors and their families become ‘in charge’ of recovery. It can take a lot of co-ordination and being proactive to ensure you are getting the help that you need. If you are a survivor – it can be useful to ask for a family member or friend to help you to coordinate this. If you want advice or signposting, then ask on the group or email Different Strokes. Our members said:

“Go and look for help and ask if you need it do not be too proud or wait for them to come to you it doesn't always happen.”

“You (and your family) are your own care coordinators. Do not expect anyone to push for your recovery. Rehab services vary shockingly by postcode, push hard for anything you can get and sleep as much as possible in between.”

8. Be kind to yourself

Whether your adapting to post stroke life as a survivor or a caregiver – being kind to yourself as you go through this process is SO IMPORTANT! In fact, 10% of the advice we received was about being kind and gentle with yourself. Some of the responses said:

“Don't be too hard on yourself. I was given that advice, but I ignored it initially.”

“Really do allow yourself time and try to think of your progress rather than focus on what you cannot do! Be kind to yourself. I progressed well according to others but never saw it myself.”

“Don’t be too hard on yourself. The new normal is very hard to accept.”

“It will get better, you can do this, just take it one day at a time & put no pressure on yourself.”

9. Remember everyone is adjusting

Stroke impacts the whole family; it may be difficult to feel understood by your loved ones- particularly if your communication has been impacted. The recovery process can be so frustrating, and you may experience anger or low moods. If you are caring for a loved one after a stroke, try to be patient and understand. If you are a stroke survivor try and remember those around you are adjusting too. Our members said:

“Make sure you tell your loved ones if they are being overprotective/ annoying (without being nasty) or if you feel down. The whole healing process is a learning curve for them too and learning together helps.”

“If you suffer with aphasia, try to remain calm and think about what you want to say, and develop other ways of communicating, like I’ve had to, many times.”

“I do get frustrated and I always tell the person I’m speaking to, if they don’t know I’ve had a stroke, to give me time to process and not interrupt my train of thought or presuming what I’m trying to relay to them.”

“I drew symbols and diagrams to communicate, but you try to find your own method.”

10. Make adaptations

While you recover and start to do more, you may find that you have to adapt routines or daily tasks to make them work for you. It could mean incorporating a daily nap to manage fatigue, it could be phasing a return to work or even a change of career or life path. Doing all the steps above will help you to learn where you are and start to move towards reclaiming your life

Our members say:

“I have really bad memory issues and can lose things in seconds. If you are the same, here’s a couple of ideas for you to consider if you wish. Keys, wallet, mobile, etc. Get a beeper locator. I have a six-tag remote and have them attached to my items, or within them. They are a godsend!”

“Different colour markers and white board for different ideas, eg, day/week planner. Shopping list reminders (I use different colours for different tasks and different carers who are coming twice a day to help me).”

“There are lots of good videos on YouTube for doing things one-handed!”

We hope you found the advice about leaving the hospital after a stroke useful. If you would like to arrange a call with a member of our team to get more specific guidance then please fill in the contact form below: