My husband had a stroke 6 days ago but I have no idea how he's getting on. He can't speak at all and he can't stand or walk. I don't know what's being done to help him. I know he sees a speech therapist but I don't know what they do or what they've said. A couple of days ago one of the very busy nurses said they had him standing up using something. I think he might have a stoma bag but I don't know. They're all to busy to tell me anything. Where do I go to find out what's happening? Who do I ask?
Hi Agility
I am so sorry to hear about your husband's recent stroke.
You will be able to find lots of useful information and support in the Friends and Family section on My Stroke Guide by following this link - https://mystrokeguide.com/information-family-and-friends
You might also benefit from contacting the Stroke Helpline who can support you at this time. They can put you in touch with a local support service in your area (dependant on your area), but also talk you through what you can expect at this time and who you can speak to at the hospital to get a good idea of what is happening to your husband.
The Stroke Helpline's number is 0303 3033 100 or email info@stroke.org.uk
You will understandly have lots of questions and concerns and asking for a multidisciplinary meeting with all the healthcare professionals working with your husband is something you can ask for, but do contact the Helpline to find out how you can do this.
Take care
Vicki
Hi Agility - One thing that frustrated me the most in hospital when I had my stroke was getting answers so I know how you must feel. I know how busy nurses are and I also felt a bit like you that I didn't like to bother them asking questions but, at the end of the day, you need to know about your husband's condition and you have a right to know. Next time you visit, talk to the Ward Sister and explain that you want them to explain what has happened, what treatment are they giving your husband and how do they feel about his progress. All these things you must have explained to you to help you when he comes home.
One thing I did learn about asking nurses questions when I was in is that each one gives you a different answer. I'm not sure if it's because they don't know enough about the condition or whether they are just 'fobbing you off' because they're too busy to talk. I experienced the same thing when my parents were alive and they were in hospital. One nurse would tell you one thing and then when there is a change of shift, you get a completely different story from another. Because of this, I definitely would recommend talking to someone in the know which is usually the Ward Sister in charge or try and time your visit when the Consultant is doing their 'rounds' so you can talk to them. Try not to worry and remember to take care of yourself too.x
Thank you.
Thank you. I managed to see my husband's doctor today. He wanted to know if my husband wanted to be resucitated if his heart or lungs failed and my husband said yes. The doctor then said that usually if that happened the chances of saving someone would be about 10 per cent but in my husband's case it would be zero. he would try his best though. He also told me to be prepared because anything could happen. This has really frightened and worried me. My husband has a small chest infection now which they think they can clear up but the doctor has said he doesn't know how far he can recover from the stroke and it's going to take a long time. He couldn't tell my anything about the speech therapy he's having or any other rehabilitation. When I go to visit he's just lying in bed but he's attempting to communicate. He has managed to say a few words.
Hi Agility,
If you're in the UK and your husband is being treated by the NHS, the NHS Trust responsible should have a "Carers Charter" which they are supposed to uphold for all carers. These usually include carers being identified as part of the initial assessment period. If that hasn't happened, that is not your fault and it needs to be put right - ask for details of the Patient Advice and Liaison Service (PALS)and call them, explaining how you are not being told about your husband. They should then give you advice on what to do...or take the issue away for you.
Something has gone very wrong here - your husband should be under the care of a Multi-disciplinary Team (MDT) and that team should be liaising with you - physio-therapists, occupational therapists, speech and language therapists, your social worker and the consultant responsible for your husband's care.
Finally, if the nurses seem too busy and other professionals are not speaking to you, PALS should be able to address that, or you should ask to see the ward or facility Registrar -there has been a breakdown in the procedures here and this should not be happening.
Make some enquiries and try to get hold of the Carers Charter - this is effectively a contract that the NHS Trust have to deliver for you and your husband. I know with everything else happening, this may seem very daunting but the NHS Trust have obligations to you that they are not delivering. Find the contact details for PALS and contact them.
I hope you are able to improve the situation,
Damian
I'm sorry you've had such difficulty finding out anything. I was on a ward with someone who could not communicate and her husband was very anxious to know about any treatment she had. He brought in a little book where the physios, speech therapists etc wrote down what they had done with her each day. Its just an idea for you!