On Tuesday 12th November, Dale collapsed as she tried to get up from the toilet. I managed to catch her before she fell.
I called for an ambulance that arrived just over 3 hours later as she could move her arms and they did not take the dementia into account. The friendly and reassuring paramedics suspected a stroke and they said they would take her to Salford Royal. This is one of the two specialised stroke centres in Greater Manchester, rather than our local hospital. I was pleased it was Salford as this was where she had her consultations for Alzheimer’s, so they would have records.
Shortly after Dale I arrived and spoke to the junior doctor and nurse who listened to me and took copious notes. She had a CT scan. I was told this was clear in that it would have shown if there had been bleeding. Dale was conscious, her usual (now) serene self and I could not detect any cognitive differences, including speech. The doctor said they would do an MRI scan later in the morning to find the clot. A registrar then arrived, asked further questions and said it clearly presented as a stroke. They told me she would be admitted to the HASU (hyperacute stroke unit)
On visiting I was told she was on nil by mouth as she was coughing due to her swallowing being affected and the speech and language therapist ( “SALT”, who is responsible apparently for assessing eating and drinking capabilities) had decided there was a danger of choking. Otherwise she was alert, happy and definitely not confused. There were posters in various positions around the ward;
I asked if I could visit at any time. The person I spoke to consulted the nurse in charge and said Dale was not confused so I couldn’t.
On the next visit on Thursday 14th, Dale was still alert, relaxed and happy. They had managed to insert a feeding tube but Dale had taken it out, she could not have food until she had been assessed by a SALT. They said they would find one but none materialised. I then asked about the toilet. Apparently, although they had had her out of bed, heavily supported by two nurses, they had made no attempt to regulate her toilet habits and just left her with pads. When asked about this I was informed Dale had not asked to go. I explained she was not incontinent, just did not self-manage.
I was told also she was being transferred to Wythenshawe that day. They eventually arranged an ambulance at 4pm and I was told it could be four hours before it arrived.
Dale had excellent medical attention but the ward was busy and understaffed, I did not understand as I was her carer why I couldn’t stay, why not trust me and let me stay at crucial times? Some of the misunderstandings could have been avoided.
Dale then arrived at Wythenshawe. This was the low point of the whole two and a half weeks. It started with the person who phoned me (I did not and do not know who she was or what role she had) saying Dale had settled in and had had a drink of hot chocolate. This set alarm bells ringing. I said that she had been on nil by mouth at Salford. I am not sure how the conversation progressed as it did but I mentioned the stroke and was told very firmly she had not had a stroke but the baseline for her Alzheimer’s had been reset and she was very bad wasn’t she? I was now very alarmed and said I had a letter from Salford Royal saying she had had a stroke. The reply was a very flustered “I cannot discuss this with you.” She asked me about whether we had stairs at home and related questions but nothing of immediate importance, so see below.
At the first family meeting six days after Dale had been transferred to Wythenshawe, it was freely admitted that Salford had given wrong information and that it was being investigated as was who had spoken to me at Wythenshawe. I did not want to make a formal complaint and left it at that. I have not heard anything further.
Visiting hours on the ward at Wythenshawe were very generous. On my first visit the next morning, I arrived to find the name above her bed was Vanessa (her middle name). However, on the bright side, they had her sitting up out of bed and had had her walking, supported by two people. She was bright and happy. I decided to stay most of the day and by the time I left, everything was sorted. The staff were very friendly and receptive. After a miscommunication from Salford saying Dale was doubly incontinent, I explained she did not self-manage and needed to be encouraged/talked through going. They listened and later in the day told me “ You were right, the pad is dry”. This was very important. Her continence had not been affected by the stroke (there was no way of knowing until that point) nor would they let it lapse. The SALT had been to assess her and she was on thickened drinks and pureed food. They certainly were treating her for a stroke and had realised that she understood most things most of the time but had difficulty communicating. I told them that was the Alzheimer’s and not as a result of the stroke. I suggested the best time for me to visit was mealtimes, when I could supervise her and spare a member of the team. They readily agreed to that and there was no problem with me bringing a sandwich in for myself. There was just one small gripe (and this was a recurring theme). They had changed the name above the bed, but when my sister arrived the person on the desk was telling her there was no Dale Kay on the ward when luckily she saw us.
Dale made very good and quick progress on both the walking and eating fronts. She was soon using a frame.
The only recurrent problem was lack of communication. After a while I asked about day clothes. I was told this was up to Dale so I brought some in and they dressed her. However, the next day, with different staff, she was in a nightie and dressing gown again.
It seemed to me that this communication issue was not helped by the rotation of staff. The ward was a long corridor with small bays of four and some side rooms. Two or three staff were allocated to each bay or room. I quite understand about shifts and days off, but different staff were allocated to Dale’s bay every day, so there was no continuity of familiarity. I am sure there is a reason for this, but in Dale’s case it did not help. Even on the day when it was decided she would be discharged the following day there was an instance of this lack of communication. It had been decided in the meeting that I would take Dale home in the car after lunch. A few minutes later the nurse on the desk told me she was just ordering an ambulance for 9.00 am the next morning. Luckily, the physio who had been in the meeting was in earshot and I did not have to intervene.
Dale was discharged on Friday 29th November. I had been told she had been practising on stairs and when we got home I got her to walk up and down stairs and she did so without assistance and as well as before. The droop had long gone and she was and is eating normal food normally, so she has made a full recovery. The member of the community stroke team phoned up and came round on the Monday and said she would be out of a job if everyone was like Dale!
So, although I know that hospitals are understaffed and staff overworked, and most of them are incredibly good in every way, there are still lessons to be learned. They talk the talk on disabilities and carers, but I am not sure they walk the walk. Lack of communication, between staff and staff to carer is an exacerbated problem with someone like Dale, but applicable to any patient. In Dale’s case, there was no lasting effect, but there easily can be.
Dale was happy and determined and co-operative throughout and I am immensely proud of her.
Dale enjoying a night out at The Lowry