"Concerns about my husband's dementia care"

My husband’s story

My husband is 81, and was diagnosed with vascular dementia around 4 or 5 years ago but only after 2 or 3 years of my insisting things didn’t appear right with him – no one believed me – my GP, nor my son & daughter – a doctor and nurse! He also has diverticulitis and (Type 2) diabetes and chronic heart disease, so I find it all a challenge at 77, and have to keep reminding my daughter I’m not nurse-trained.

My husband has been quite independent but needs constant reminding to do things especially to drink! I have to supervise his dressing and personal hygiene, and I do all his drugs as he was getting confused as to what and when – of special concern was warfarin.

He fell recently, (November 2012) and I couldn’t lift him and used my alarm button and the paramedics were called. They thought he may have a urine infection as his temperature was high, so took him to the Queen Elizabeth Hospital A&E, where they assessed him very swiftly and confirmed this and gave him some antibiotics and discharged. My daughter arrived to take him home by car, and once home my nightmare started. He lost strength in his legs and could hardly walk up the steps to the house. My daughter and I managed to get him inside and he spent the night downstairs on the sofa. At 2. 30am he was unable to stand to pass urine, and his co-ordination was terrible – he kept missing the bottle - and wet himself. I was distraught, and called my daughter back, who then spent the night with him.

I tried the 24/7 Rapid Emergency Response team but only got an answermachine. I thought I must have got it wrong. (They later apologised for this).

The GP On Call refused to come out but contacted a duty social worker who apparently said it wasn’t an emergency as he hadn’t fallen and we would have to wait and contact our own GP in the morning. So even though my daughter and I couldn’t lift him between us, we had to keep him at home? It was a very fraught night.

When I contacted the GP next morning, he arranged for a bed to be reserved and an ambulance to take us to the Queen Elizabeth Hospital.

At 12:30 pm, we arrived at the Clinical Decision Unit. There was no bed. My husband was on the trolley for 2 hours with the paramedics. There was a lot of frenetic activity around a white board – the first time I’d seen any staff. They still hadn’t spoken to him – and he was getting restless. The paramedics told us that the nursing staff had pressed the ‘release’ button at 13:10 – implying that my husband had been handed over? My daughter said this was to make sure their targets looked like they were being met. The paramedics were with my husband until 2pm.

At 2pm a nice nurse explained what was going to happen – he’d been taken to the bed by this time. My husband was confused – I could tell he wasn’t absorbing anything. I told them he couldn’t stand but I could tell by their faces they didn’t believe me and they still dragged him out of bed because they insisted on weighing him. My daughter was horrified – she said they would have used his armpits, risking shoulder dislocation and said they should have done a risk assessment and used a hoist, but they managed after a lot of struggling – I could see my husband’s feet sliding everywhere under the curtains, and he sounded distressed – they still didn’t appear to believe us about his confusion.

At a quarter past 4, a lovely junior doctor assessed my husband, but I still felt they didn’t believe us – the sideways looks we were getting. At 17:15 my husband said he wanted to pass urine and the nurses wanted him to use a bottle. My daughter said he needed help, but they left the bottle on the end of the bed, drew the curtains and had to run off to find a confused patient who had walked off the unit. When they got back my husband had wet the bed, and because there were no nurses left, my daughter helped make the bed, and apparently she said they dragged him up using a lift that she says was forbidden years ago. My daughter refused to leave his bedside after this, as she was quite upset at the lack of dignity afforded him and my obvious distress.

They took a swab from my husband’s nose and laughed when he winced in discomfort, saying that she found it amusing seeing the different reactions. My husband’s nose has remained tender since his cancer was removed a few years ago. His hurt is my hurt.

His meal was left on a tray in front of him – because of his lack of co-ordination he had great difficulty eating it and it was left to us to feed him.

At 6pm, the drugs were given out but some of his diabetic tablets were missing – I had earlier given them a list of his medication, they blamed the electronic prescribing, I always carry a supply of his drugs and offered them the missing tablets which they accepted asking if I could leave some for the following day as they would probably have the same problem.

Shortly afterwards, he had another accident because they were too busy, so my daughter insisted on staying as she felt he wasn’t safe. My daughter asked for cot sides, as he was very restless, and a kind Healthcare Assistant stayed behind after the end of her shift to fit them.

At the end of visiting, at 8pm, we asked the nurse if the consultant was coming, and was told nonchalantly that the consultant would have gone home by now, and it could be any time between now and 3 o’clock in the morning before a more senior doctor saw my husband. The face and the deep sigh made me feel like I was being a nuisance asking. My daughter asked if there was any likelihood he might be transferred out, and offered her telephone number, but was told they would be too busy in the night to phone us if this happened. I was incredulous that we would not be informed if my husband was moved out of the hospital. The HCA was more helpful and gave us a number to ring in the morning to see if he was still there or to find out where he may have been moved.

My daughter called the number the next morning around 6am and tried three times with no success – just ringing out – before finally calling the main switchboard and asking for the Matron on call, who returned her call and found a member of the ward staff to speak to her.

I think what has upset me more than the drug error, dragging my husband round the bed, leaving him to wet himself was that I felt that no one believed me, and treated my husband as a hindrance. There was no communication for the two days unless I asked my daughter to ask for any updates. Fortunately he was transferred out after the second day to a nearby community hospital. That didn’t fare much better, which leads me to believe this is what we must expect from our NHS now.

14 years ago when my husband was only 67 and had no dementia, he was poorly managed on the same unit, then called ‘Medical Assessment Unit’, and I had hoped that this new ‘flagship hospital’ would have improved. I am fearful for me or my husband having to return there.

My son complained back in 1998, and received a long letter from the then CEO Jonathan Michael. I still have it – and disappointingly the same concerns are still arising, and it could have been written in 2012.

“Your letter and the description of your father’s care both in the community and in the hospital read rather like my worst nightmare. I can only apologise for our part in his very unsatisfactory management... There is no excuse for the length of time it took for your father to be seen by a casualty officer nor the length of time it took for him to be transferred to a ward... It is also not clear why your father’s case was not reviewed by a senior clinician... I accept very much the message and have taken on board the necessity to review current procedures within the Trust.”