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alansd

Help me be a peer support person

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What questions would you have liked to hear from a support person while you were hospitalized? I need to mold my approach. Taking classes now to start visits in a few weeks.

i want to be encouraging empathetic and helpful without being invasive and of course not violating hiipa.

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Alan,

I salute your endeavor.  I had a million questions that I didn't believe were important enough to take up a doctor's time.  If you let the patient just talk a while, the things they want to know will probably come out.  Again, what you are doing is so great. Congratulations !!!

James

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I think that JWalt is right; the questions will come out. However, I felt scared a lot, mostly because I was confused. and/or didn't know what was going on. It would have helped me so much if someone had just explained the basics to me. Instead, I pummeled my husband with questions he couldn't answer, leaving us both frustrated.

 

1. What happened?

2. What is a stroke?

3. When can I go home?

4. Why can't I use my arm or leg?

5.Therapy? What's that? Why can't I have therapy at home?

6. Am I going to die, and that's why I can't go home?

7. What happens when I go home? Will I be cured?

 

Hopefully, none of your clients will be like this. I really was.   Becky

 

 

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My only comment is treat people like adults. Some of the hardest days were the ones where the nurses treated you like a child. As you know having a stroke does not give you dementia (mostly) Even if you can't communicate well and your memory is a bit off you are still a responsible adult so don't just say "no you can't" explain why I can't or rather shouldn't.  Mostly the nurses did not have time to explain why something had to be done a certain way, and I personally am not good at being "good" unless I know why, and even then I'll probably argue about it.

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Becky.     The NZ health system is excellent but I did get let down in the hospital when I first had my stroke. Faced with a larger array of problems my body had never experienced before, I was at a loss to know how to handle it. On the third day I was asked if I'd been given the 'Stroke Package' and had to admit I hadn't. It turned out to be a large envelope with a mass of information about the problems I was facing plus lots of advice and addresses of organisations that could help me.

          It was a God-send and a great relief to understand a bit more about what had happened and what I might expect. This package should have been given me when I was moved into the ward but thanks to one nurse being on holiday it had not been and that was a very annoying breakdown of the organisation and  I'd have been spared three days of unnecessary concern and worry.

Deigh

 

 

 

 

 

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Amen! to everything you said, Deigh.  I had no idea what was going on. I later thought that it would've been so nice to have had some info 

2yrs later, I found Strokenet and had my remaining questions answered.  Becky   

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I know we have to get on to rehab straight away. I know. 

I would have loved to have been told, however, it's ok to say NO.

It's ok to say I'm overwhelmed today. I need some thinking time. I have a lot to process.

One afternoon to try to get yourself together is not too much to ask.

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Been doing the volunteer work for several months now, the patient load varies a lot, but seems there are always new stroke survivors to see.

it is more natural to me now, I've seen aphasics, deniers, multiple stroke experiences, younger people, older people. Friendly mostly , some belligerent but more to the nursing staff than to me. they usually enjoy the visit. I know it makes me feel good, and often very blessed to be in such a  good recovery point.

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Alan i think it is wonderful what you are doing...for the survivors and for your own self. I am a bit on the fence about anything in the hospital...my stroke was missed and i wasnt diagnosed for about 2 months. I had no idea what was wrong with me...I felt like I was in another realm or on a another planet. Once i had my diagnosis i know i hadva huge amount of fear and questions. I can't really remember what exactly. I barely remember the 2 years post stroke just bits and pieces. I would talk more but feeling yucky (I have strep A with scarlet fever) so i am exhausted and feverish but i cant sleep. Go figure. I just was inspired by your thread. Keep up the very great work my friend!

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ALAN, I THINK IT'S FANTASTIC THAT YOU'RE DOING THAT! I bet that the pts. you see really enjoy your visits, and that they get a healthy dose of thinking positive.

   Tracy, I hope you feel better soon. THAT SOUNDS LIKE ONE OF THOSE TIMES YOU JUST WANNA SAY,"WAKE ME UP WHEN I FEEL BETTER"

BECKY

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Thank you and Amen Becky.

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Tracy, I too had some disappointing moments in the ER/hospital experience, but they are just people who try their hardest to help us all.

Some are really good at it, unfortunately some aren't,  they didn't all get A's. Maybe there should be tan "A" list hospital , like one on TV where everyone is a

genius like  Dr. House

.My Pts have meant well but some of them simply go through the motions.Now I have one who seems o be really working for me to improve,

Hopefully we will make  it happen, I hate the way I am quite frankly .New Ot is on my horizon too ,I don't know which I want back more, my left leg or arm.....?

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Quote

 

It has been almost a year since I logged in to this support group and I usually just post a blog but this forum intrigued me.  I am a caregiver for a stroke and seizure survivor of almost 5 years.  2019 was the first year during the course of the past five years we didn’t have a stay in the hospital and rehab. I am speaking from the angle of a caregiver but I also believe I understand greatly what my stroke survivor would have liked in a peer support person.  First, from my angle, I would have liked someone that could have sat with me to explain what the stroke journey was likely going to look like.  I did ask a lot of questions but there wasn’t a clear picture given by medical staff.  Everything moved so fast, like getting him up to do PT when he was doped up, because they said it was essential.  This made it seem like he would be good to go in a few weeks. Wrong! So just hearing a typical time line of most survivors would have helped. My stroke survivor loved to talk even during the difficult times but he didn’t want to talk about his stroke.  When people came into the room he always wanted to visit and talk about his frustration with various medical staff.  He didn’t want to be treated like a number.  I mean, when you are getting poked and prodded continually and they go about it like you are a piece of meat, it gets old.  I remember my husband started making up answers for when he would get asked if he was in pain because it is required for them to ask because no one really listened.
That is just a few. I hope it helps
 

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I would ask, " what could I do to help ( survivor) or... go with the person and listen and ask the survivor what you could do for them. Or.. talk with the person first and ask what would you like to know

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I do that. I introduce myself, then ask if they need anything, if they are being treated well and donthey have any questions.

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I guess that I was lucky.  My wife pretty much camped out at my bedside for the first week, kids cams to is it after school, and my sister-in-law (doctor) made sure that the medical staff checked up regularly.

 

What I wanted more than anything was an idea of what the next few days, weeks, months would be like.  Longer than that would have been too frightening, but an idea of the process and timing of getting from the hospital bed, unable to sit up unaided until I was out of rehab, about to walk again.  A realistic timeline, rather thin thinking that I'll be right as rain in 1 week or two.  Telling me that I would need to take lots of regular (and unscheduled) naps for the next year, thoughts would be jumbled up, that I would be incoherent at times, unable to follow conversations at others.

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On 1/12/2020 at 8:28 PM, alansd said:

I do that. I introduce myself, then ask if they need anything, if they are being treated well and donthey have any questions.

awesome

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Alan, you are amazing. I'm so glad you are able to help people like you do.

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