Since the world went into lockdown one of the most terrifying thoughts for people living with dementia has been the fear of being admitted to hospital. Unfortunately, on 28th July when I suddenly became unwell, I was admitted to my local hospital. During my 6 day stay I was moved four times, I was unable to get my Parkinson’s medication when I needed it and in one room I was left alone with only a bowl of hot water to wash with a cardboard commode to pee and poo in and arrange for the disposal myself. I know the doctors and nurses did their very best for me, but it was a lonely and frightening experience that I think is important to share. I am sharing to explain how small things can become much bigger for someone living with dementia in the hope that this will help others who may be admitted in the future.
It began on Tuesday 28th July while out at my sister-in-law’s for a socially distanced BBQ, I felt sick and had pain between my shoulder blades. I somehow drove myself home but when the pain became so intense and I experienced shortness of breath that I called 999. The paramedics took me to A&E where they did some tests but sent me home telling me it was either just my asthma or a hiatus hernia.
During the night my temperature spiked, I began vomiting, was unable to make sense when talking and sleeping constantly, and at the advice of the out of hours GP my partner, Heather, called 999 again and I was taken back to the local hospital. This time, due to my high temperature, I was taken to a Covid area so I was now on my own without Heather. Tests for coronavirus came back negative and during the night was able to be admitted onto a ward that was not a Covid ward.
However, later during Wednesday I was moved again, this time to a Covid Ward. This confused me as I had been told I had tested negative for coronavirus and that actually they suspected an infection in my liver. The consultant had told me my blood tests showed that my CRP levels were raised and were showing Lymphopona. I asked her to wait while I wrote this down. I had no idea what this meant and had to use my phone to Google it when she had gone. From Wednesday morning I didn’t see a doctor again until Friday morning. It was all so confusing, I had no idea what was wrong with me, why I was on the Covid ward unable to see Heather and when I might get any more information.
On Thursday afternoon I moved for the third time into a side room on the Covid Ward. I don’t know why I kept being moved. The room was small with a window that couldn’t open and little shutters on the door. The television didn’t work and I wasn’t allowed visitors. Other than the nurses coming in to give me medication and do observations I saw nobody. When they did come in they were dressed in full PPE it was so difficult to hear them so they had to shout and I found myself shouting at them so they could hear me too. They later told me they could hear me just fine, it was I who couldn’t hear them through their masks.
I wasn’t allowed to leave this room so was given a bowl of hot water to wash with and a commode to use. I was instructed to put a gel sachet into the commode before use and then dispose of the remains in the bin. The bins weren’t emptied frequently enough and the smell was awful, I had to ring my bell to ask the nurses to dispose of the bin contents. As there were no curtains in the room assumed visibility on the window glass was only one way and didn’t know there were shutters on the door that could be closed from the other side. Let me just say I must have given a few people a good show during my stay. Joking aside though it would have been kind of someone to show me there was a blind and shutters that could be closed.
I remained feeling very unwell and during the night on Friday I called a nurse to ask for something to ease the pain and sickness. Dressed in full PPE her tone was curt and despite telling me there was nothing written up for me to take she did return a while later after speaking with a doctor with a tablet in a pot and handed it to me abruptly. I asked her what the tablet was for as I do not like taking tablets unless I know what they are for. I persisted throughout her shift to talk to her, bear in mind I have been locked in this room with nobody to talk to and have not seen Heather since late Tuesday night. Surprisingly before she finished her shift in the morning she came back to thank me for chatting to her and helping her shift go quicker.
I take medication at four set times each day for my Parkinson’s, if I don’t I get symptoms and it is very important to me that I keep this under control and I take the medication on time so that I know I have taken them and my dementia doesn’t cause me to forget I put reminders on my phone. When I explained to the nurses that I hadn’t had my medication on time I was told that my time for taking it didn’t fit in with their times for giving out medications. I emailed my Parkinson’s nurse who came to the ward to ensure they had the correct times and dosages for my Parkinson’s medications. I was being given the wrong dosages and some medications at 10 am when I should have taken them at 10 pm, so confusing and I couldn’t understand why my Parkinson’s symptoms were worsening and I was having hallucinations. Something I don’t usually get.
On Saturday I was moved for the fourth time to another room. Each time I was moved it all happened so quickly, I was given no time to prepare and compose myself. For a person with dementia in an unfamiliar setting this was so disorientating and confusing.
It was a very frightening and lonely seven days. I experienced isolation I can only describe as being like I was locked in a prison cell. For the first time since my diagnosis I was hallucinating and seeing fairies on my bed that I kept trying to catch for my friend who makes fairy houses. One day I could hear music from an orchestra. I searched the room listening at all the walls. When I asked the nurse if she could hear it she just dismissed me shrugging her shoulders.
There were nurses who were absolutely brilliant but I was aware they were so busy and didn’t have time to chat to me. I just needed some reassurance. I was terrified I was going to catch coronavirus and angry too, I have worked so hard since lockdown to shield and stay safe. It wasn’t until the Monday when I had been able to write a list of things to ask the consultant that she explained I was on the covid ward because even though I had tested negative I had symptoms that were similar and they had to take these precautions, therefore they were treating me as though I was positive for Covid. I’d been nearly six full days at that point with no explanation.
I’m lucky I could use my mobile phone to call Heather or use google. I was able to write down a list of questions to ask and I was also able to reorientate myself each time I was moved. The boredom was intense, with nobody to speak to and only able to lay and worry in solitary confinement it was frightening.
I’m now happy to be resting at home and very grateful to everyone who took care of me in hospital. I would ask for healthcare staff to remember their dementia training and how important it is to be kind and give reassurance and encouragement to people like me, explain where you are, why and what they are doing to you, also give a diagnosis. To move people between rooms as kindly as possible helping them to become familiar with their new surroundings. Listen and help when you think someone might be experiencing hallucinations. Explain using simple and straightforward language and take time to check the person has understood. Be aware of how frightening hospitals can be, especially in a pandemic and especially for someone with dementia.