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Susan - Interview 62

Age at interview: 67
Age at diagnosis: 63
Brief Outline: Susan experienced a stroke in 2007 while at home with her husband. Her husband called for an ambulance, which unfortunately, did not arrive until much later. While she was waiting for an ambulance she suffered a fall and injured her left side (hip, shoulder, wrist, and arm), these injuries were left untreated while in hospital.
Background: Susan is a 67 year old retired bank clerk supervisor and bed and breakfast owner. Her ethnic background is White British.

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Susan experienced a stroke in 2007 while at home housecleaning. When she tried to place her foot on the pedal of the vacuum cleaner to turn it on she could not move her foot. She felt strong “pins and needles” in her head and down her left side (less so on the right) and recognised that she was having a stroke. When she called out to her husband she realised that her speech was affected as well. Her husband called for an ambulance, but unfortunately, she waited for quite some time before help arrived. She was hoping to get to the hospital quickly to get what she called “stroke reversal treatment” (thrombolysis) but it turned out that the hospital did not have that particular treatment. While she waited, she suffered a fall and injured her left side (wrist, shoulder, and arm).
 
Susan spent time in the emergency department where she said she felt safe. Upon moving onto the stroke ward, the reality of her situation sunk in. She felt depressed and frightened. It was hard for her to see so many sick people around her and was reminded of the recent death of her Mom. She realised that she wanted to regain her independence so she sought out physiotherapy. She had already regained some speech and wanted to focus on her mobility but was still really weak. With the help of her husband, she sought out rehabilitation therapy. The staff nurse had seen her doing leg exercises for her arthritic knees and fast tracked her to rehabilitation. She did exercises in bed and practiced walking around the bed. She found that using a wheelchair, moving herself around with one hand and both heels (eventually) enabled her to get circulation moving and helped her feel more independent. She progressed to walking before leaving hospital. She felt that her wheel chair was a great aid in this recovery process. In addition to taking an active role in her recovery, she took it upon herself to help and advocate for other patient’s around her who were in need.
 
While in hospital the main focus was on her stroke and not the injuries that she sustained while falling, despite asking repeatedly for help. She said that doctors and nurses all said, “You’ve had a stroke; what do you expect?” No one investigated further.
 
She had mixed feelings about her care in hospital and home. In hospital, she recognised that the nurses on the ward were very busy which made it hard for them to address all aspects of care (e.g., assistance with eating). After she was discharged home she received home visits which she rated favourably but the physiotherapy was not as helpful as her shoulder and wrist injuries were not taken into account. She was also offered home assistive devices, and was most happy about her wheelchair, which allowed her to practice walking on her own safely (e.g., would push the back of her wheelchair and sit down and take breaks when needed). The downside was that she had a hard time accessing physiotherapy after discharge (two week waiting period and even when in place, it was infrequent).
 
She thinks that her stroke was caused by high blood pressure and being overweight. She was very active and regularly engaged in exercise prior to her stroke, but felt that it may not have been the right type of exercise (i.e., not strenuous enough). Susan also suffers from arthritis (which she has in both of her knees) and is currently awaiting surgery.
 
Susan now attends a community gymnasium to try to improve her fitness and build energy. She still experiences lack of energy, but celebrates small gains, and finds humour in difficult situations. She is grateful to her family (husband and daughters) for their support. She no longer runs her own bed and breakfast business, but it remains in the family as her daughter has taken over the business.
 
Susan feels strongly that better liaison between hospital, physicians, and post stroke community services are required including access to on-going physiotherapy (these services can be difficulty to access due to long distances). In addition, she feels that stroke patients and individuals who experience a fall should have their other injuries treated as well as the life threatening condition which brought them to hospital.

 

 

Susan recognised that she was having a stroke and called to her husband to get help but her...

Susan recognised that she was having a stroke and called to her husband to get help but her...

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But, in a very short space of time I had pins and needles going up my left side. Pins and needles in my head and realised that there was something quite serious going on. And worked out that as I didn't have a pain anywhere. Didn't have any pain at all, I wasn't sweating or anything like that. I felt perfectly normal except I had a lot of pins and needles in my head and down my left side and a little bit on my right side. So I thought, “Well, I'm probably having a stroke.” So I thought I'd better get blood to my head and laid down in this chair that switches (to) a recliner. And my face had started to go a bit numb on the left so I had to quite a job calling my husband (even though) he was just in the next room. So I was calling out, “[Husband’s name, husband’s name].” Stroke, ambulance.” And he said, “Speak up I can't hear you.” So I thought this was rather funny and he was still in the other room. So I kept (calling) “[Husband’s name] ambulance, stroke.” And he said, “Why do you always wait until I'm in the other room before you call me to do something.” So I thought, this is not good and yelled at the top of my voice as (best) I could, “[Husband’s name] come here!” And then managed to say, “I'm having a stroke, call the ambulance.” Still stayed horizontal in the armchair and I could feel the pins and needles creeping up heavily on the left side, and to a lesser extent on the right side. No other symptoms whatsoever. My mind was as clear as it ever is. It was purely the pins and needles which I guess meant that the blood wasn't getting to my brain somehow. It was very similar to when you sit with your legs in a cramped (position) and you don't move them for a long, long time. And then when you go to move your legs again, they hurt because the blood, wasn’t getting through properly. And they hurt until the blood's circulating again. That was the nearest likeness I can tell you of what it felt like. It was less on my right side and quite strong on my left side.
 
And the ambulance couldn't find us which was quite distressing. Although my husband was on the phone to the 999 person trying to direct them. And then because we're only half a mile from the doctor's surgery I thought perhaps I better get him to take me there in the hope that somebody was at the doctor's surgery. So, I had a little bit of strength left. I had enough strength to either go to the bathroom, which I wanted to do, or get to the front door. And I propped myself up on the wall in the hall and made my way to the front door and called [Husband’s name] to take me to the doctor's. And the ambulance and the doctor turned up at the same time just as I got to the front door. And I thought, “Oh I, I can't stand up anymore I’d better sit on a step. But because I've got arthritic knees I couldn't sit on the step, my knees wouldn't bend and I started falling backwards. And I realised I was going to go through my plate glass door so I put my left arm down to deflect myself away from the glass. And I was going quite numb by then, so I didn't really know I’d hurt it at that stage. I landed on it, it was tucked under me. I landed on it.
 
And the ambulance crew got me on the ambulance, on the stretcher from there and took me to hospital. But, I could talk in a peculiar way, with one side not working, enough to say my name and answer various other questions.

 

Susan would use the nurses’ check-list by her bed as a goal-setting tool.

Susan would use the nurses’ check-list by her bed as a goal-setting tool.

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I had a chart on the wall that said like one, two, three, four, five, six, stages that I had to achieve before I could go home so that was a good landmark. It was like feeding unaided, walking unaided, things like that. I don't know which order they were in or whatever. It also said that if I fell out of bed they had to have a hoist to lift me. And I'm afraid I still have a weight problem. But going down this list really (helped) and yes I can do that, yes I can do that. That was good, that list on the wall. I don't think it was meant for me, I think it was meant for the nurses. So having little markers to achieve helped.

 

 

With the help of her husband, Susan was able to “fast-track” herself to rehab while in hospital.

With the help of her husband, Susan was able to “fast-track” herself to rehab while in hospital.

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Then I think on, I think it was a Friday, I said to my husband. “[Husband’s name], I've got to get out of here. I, Please get me some physio. I don't care how much you have to pay privately and if the health service can give it to me fine. I have got to get some physio. I have got to get out of here,” And being the sweetheart he is, he went to speak to the staff nurse. And he pulled a few stings and got a physio out there and with a helper that afternoon. I don't know how I got out of bed. I just had no energy at all. [laughs] But they helped me to sit on a chair. Literally sat down a couple of minutes talking to me. I think I might’ve moved a couple of steps. And I said, “I'm sorry I've got to get back to bed now.” I was so weak. But they said they'd come again the next day. And they brought a Zimmer frame the next day. I thought, Oh what, how hilarious you know tell my friends I’m on a Zimmer frame at my age.” [Laughs]. But I couldn't use it because one arm was completely lifeless and you need to hold Zimmer frame with two hands. And therefore I couldn't use it. So I had a person each side of me and they moved me six steps in a circle, sat me in a chair again. And I sat there for fifteen minutes the second day. And I said,” Please can you put me back to bed?” which they did. And all during this time believe it or not, because I've got bad knees and I was told to build the muscles up in my legs. I'd been doing leg exercises, raising my legs, even though I was in bed with a stroke, I'd been pulling my nightie and doing this. Doing the leg exercise with my one good hand and doing both legs like that to try and make sure that my knees didn't seize up from the arthritis. And the staff nurse had seen me doing this and seen me trying to help myself and so he fast tracked me to rehab.

 

 

Susan talks about feeling frustrated that her arm fracture was not addressed while being treated...

Susan talks about feeling frustrated that her arm fracture was not addressed while being treated...

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And the ambulance couldn't find us which was quite distressing. Although my husband was on the phone to the 999 person trying to direct them. And then because we're only half a mile from the doctor's surgery I thought perhaps I better get him to take me there in the hope that somebody was at the doctor's surgery. So, I had a little bit of strength left. I had enough strength to either go to the bathroom, which I wanted to do, or get to the front door. And I propped myself up on the wall in the hall and made my way to the front door and called [husband’s name] to take me to the doctor's. And the ambulance and the doctor turned up at the same time just as I got to the front door. And I thought, “Oh I can't stand up anymore I’d better sit on a step. But because I've got arthritic knees I couldn't sit on the step, my knees wouldn't bend and I started falling backwards. And I realised I was going to go through my plate glass door so I put my left arm down to deflect myself away from the glass. And I was going quite numb by then, so I didn't really know I’d hurt it at that stage. I landed on it, it was tucked under me. I landed on it.
 
When I fell I wasn't aware that I'd hurt myself. I remember that, I’d landed on my arm. My left arm was under me when the ambulance people got there. But it didn't hurt at that stage because my left side was quite numb. The nurses couldn't understand why I kept saying, “It hurts, why does it hurt? I've only had a stroke I haven't had a car accident. It ought to be numb why does it hurt so much?” And they kept saying, “You've had a stroke what do you expect?” So I said, “Well that's just it, I haven't been in an accident, why does it hurt so much? My leg doesn't hurt. Why does it, you know, why does it hurt?” And all I ever got was “you've been, you've had a stroke what do you expect?” I, in the end, by the time I got home, I'd told (some) doctors, all the nurses and nobody looked into it. I ended up, I found out later after I got home and went for an x-ray that I'd had a fractured wrist and that it'd healed itself.

 

 

Susan talks about the importance of setting small manageable goals in recovery.

Susan talks about the importance of setting small manageable goals in recovery.

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I’m quite determined that for instance if my mother said, “No you can’t do that.” So I’d say, “Well when can I, when do you think I will be able to?” And she’d give me reasons and the whyfores and the wherefores. And I’d, that would allow me then to not feel the restraints of the exclusion for whatever it was that I wanted to do. And I always came in on time when she said be in by nine or ten, I’d always came in by nine or ten. And so I felt that this was kind of good training for “okay so I can’t do this now. I can’t walk now but I’m going to do it. So how long will it take?” Well I don’t know but I’m going to do a little bit today. Maybe I’ll just move one step today. Or maybe I’ll walk to the end of the bed today holding on. And then I could do that. So then I thought, right I’d better go and sit down again because I felt pretty wobbly. [laughs] So I’d walk back to the bed and because of the iron railings on the bed I could use my good arm to hoist myself back into bed.
 
Don’t try and think you’re going to do it all at once and run a marathon. Make, set yourself small goals. Think okay I can walk to the kitchen. Then you have to go and sit down again. Okay maybe a couple days later you’re feeling good so you think okay I’m going to walk to the kitchen and put some china away. And you don’t drop that. So you think that’s good I managed to do that without dropping it. So then I have to go and sit down again. And then it went on so ok I think I might be able to put the laundry in the, machine today. So I held on or wedged myself up against the wall you know with my funny arm. And put the laundry in with my right arm. And did a little bit by that and gradually... take nibbles not big bites at life.

 

Susan had a hard time accessing physiotherapy following hospital discharge.

Susan had a hard time accessing physiotherapy following hospital discharge.

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When I was leaving hospital they said, “You can go home but you can't have any physio for two weeks.” So I said, “Fine, I'll go without it for two weeks, I'll try and make something up.” So that, that was two weeks out of the three months which are most important to your...
 
Recovery?
 
...recovery. There's a short time where you get the maximum gain in your recovery. So that was two weeks of mine gone, apart from the time I was in hospital. That was two weeks of my time gone without a physio.
 
So after your hospital discharge a couple weeks went by where you didn't have any?
 
No, they warned me I wouldn't (not enough people)
 
Oh, OK.
 
But I said to the girl that was going to come, “Can you not liaise with the hospital and give me (or) send me a form with exercises on.” And she said, “No, I can't do that without seeing you.” So I said, “But I should (not)be wasting time, could you not speak to the physio in the hospital. He knows what I've been doing, he knows what I can and can't do. Could you not speak to him and then send me something you think is relevant in an envelope?” “No, I can't I need to see you.” So I said, “But I've been wasting time. You must be able to think of something that won't, you know, won't do damage that I can get on with, while you're dealing with whatever it is you've got to deal with.”“No, I'm sorry we've got to see you that's the rule.” I was very annoyed at that. And then I found she came once or twice. And then I got a phone call to say, “Sorry I can't come there's somebody that needs me more than you.” So I could quite believe that. I thought what a shame that's more time wasted. And then she said she was going on holiday for fortnight but she'd arranged cover for me. And nobody came, nobody phoned. Then the next week went by and nobody came, nobody phoned. And then went on for another few days and nobody phoned. So I phoned them and said, “What's going on?” And of course there was an apology. They don't know what went wrong but they should’ve sent somebody while she was on holiday. So that was more time in my physio that I didn't get (help) (from) her.

 

 

Susan questioned her doctor about her medication leading to a change in dosage.

Susan questioned her doctor about her medication leading to a change in dosage.

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I found that, when I came out of hospital I had millions of tablets to take but they all seemed to be working so I’m looking on it as a blessing rather than a curse, having to take all these tablets. And again, afterwards, after the stroke and after I was leading a semi-normal life, I went back to the doctor’s for my usual checkups, blood pressure, heart and everything. And again he said, “Well, it’s a bit high.” I said, “What is it?” And he told me that, the reading, and I said, “But surely that’s what it was like before I had my stroke.” And he said, “Yes, well we would like it a bit lower.” So I said to him, “Well am I on the right medication?” So he said, “Oh, let’s have a look.” And he looked at his computer screen and he says, “I think I’ll double this one.” And he doubled one of the tablets to double the strength and after that my blood pressure went down to normal. But it make me wonder what would have happened if I hadn’t said to him, Am I on the right medication?”

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