In this guest blog post (one of two), soprano, performer, recording artist and soon-to-be author Joy Dey shares her experience of dementia care in the UK, where her mum Winifred was neglected in three separate care homes.
When my Mum was first diagnosed with Alzheimer’s, I knew I faced a tough task convincing other family members that, at some point, Mum would need to go into care. At that time, despite hearing a myriad of stories about ‘how awful care homes were’ I had faith. This was, mostly, due to the fact that, by then, I had been entertaining in care homes for over 10 years. Many homes I visited were warm, welcoming, friendly environments. It was during this time that I was awakened to the Power of Music, particularly for those living with dementia.
What had begun as a way of earning a ‘bread and butter’ income had very quickly become a vocation. I didn’t realise, at that time, the importance of stimulation/activities, especially for those living with dementia, and I loved it! Oh the joys of witnessing an otherwise forlorn resident light up like a Christmas tree when they heard their favourite tune or aria. I felt that music, especially for those living with dementia, was possibly as important as food.
It might be fair to say no one, ever, said “I want to spend the rest of my days in a care home”. [Peter Kay springs to mind.] A few may have, to be fair; those without relatives or not wanting to be burden on their families, altruistic souls. It was my Mum’s greatest fear. In the early stages of Mum’s diagnosis, one evening, I received another midnight call from a desperate sibling insisting that I speak with Mum to remind her that she didn’t have a kiddie at 74 years of age. I might have, foolishly, mentioned that it might be time for her to go into a care home. She didn’t speak to me for 3 months. I was heartbroken.
If there was ever a doubt in my mind about the ‘care system’, however, I would often be reminded of the CQC. The Care Quality Commission, who would like ‘Knights in Armour’, arrive ‘unannounced’ at care homes etc. and ‘put things right’ if there were any failings. I had faith.
Sometime later, another sibling reminded me when it was ‘time’ … and to ‘do it’. I acted upon that, as it was probably the best and only support I was going to get over the next 6 years from my siblings.
Care Home No. 1, May 2013
I chose a home I had the most faith in. It wasn’t close to my own home but, at that time, it was the best I knew. It housed an excellent Manager (very important) and one of the best activities coordinators (also very important) I knew. Things started well and Mum settled quickly. However, the Manager left a few months into Mum’s stay and the AC became unwell and eventually left. Mum developed lymphoedema, often sitting up in a chair through the night with the staff, and then cellulitis when a resident ran into her with his Zimmer, and gouged a hole in her foot. I was told I had to provide a stool or pouffe if I wanted her feet up; the home wouldn’t buy one. I purchased one and every other bugger had their feet up on it, except her.
As I visited Mum practically every day, I became a familiar face to the residents and I would often be mistaken as “nurse … can you ‘elp me”? I obliged when possible but Health & Safety kicks in, often in all the wrong places, and you are scared to ‘elp anyone.
Unfortunately, the care diminished and I, fortunately, visited Mum one evening when she looked quite ill. She was grey faced and gasping for breath. Staff hadn’t called an ambulance. They were all sitting around the dining room table chatting about their weekend. I insisted on one. Paramedics arrived, confirmed – absolutely- that I had done the right thing and filed a ‘vulnerable adult’ report against the home. They told me they were appalled at the non action/involvement/attitude of the staff, without a word from me.
Mum returned after a stint in hospital, but within 24 hours had a fall, and been given another resident’s medication amongst other failings. She was taken to hospital again but Social Services recommended that she did not return to this home.
Care Home No. 2, Phoenix Residential Care Home, Chatham Maidstone Road, Kent – April 2015
I knew the newly employed Manager at a new home close to mine. I applied for Mum to go there once she was discharged from hospital. This took a while, owing to CQC delays, and Mum was threatened with an eviction. The last days there were very uncomfortable indeed and the stress led me to being hospitalised with a suspected tumour. However, eventually, everything was settled. I was happy, Mum seemed happy and I was, again, hopeful. However, the Manager was sacked soon after she had set everything up and a member of staff, with no apparent expertise or qualifications, was given a role as Manager. Following a succession of UTIs, malnutrition, heart attack, escape on to a very busy main road, no stimulation and general poor care, Social Services decided that Mum should move to another home. The home had been reported to CQC by many, it appeared, but the CQC worked with them to keep the home open.
Care Home No. 3. Holly Lodge, Chatham Maidstone Road. Kent. March 2016
This started well despite a ‘requires improvement’ rating by CQC. Social Services recommended I take a look at it, which I did. Holly Lodge was clean. A pleasant and mild mannered Assistant Manager showed me round. The menu looked promising. I was impressed, despite the rating. There were no activities to speak of but I felt I could cover that aspect for Mum. My only real concern was that Mum’s room was on the 1st floor and the only way of getting there was via a stair lift. I expressed my concern and asked that Mum be moved to a ground floor room when one became available. I was aware that the use of a stair lift might possibly not be recommended for a resident living with dementia. However, whenever I enquired with owners/management about Mum and the stair lift, I was reminded that Mum had ‘settled into’ using it.
Mum suffered a further heart attack in May of 2016 and was hospitalised. On her discharge, it was suggested that a physiotherapist be requested to regain Mum’s mobility. It never happened. Instead of mobilisation, the wheelchair was used rather than the walking frame. Mum’s mobility began to decline further, although I would get her up and walking with the frame whenever possible.
Over the next 18 months, services at Holly Lodge declined. The Manager left on maternity leave; not replaced. The Assistant Manager left; not replaced. The joint owner took over as Manager and so began a period of lack of support, lack of transparency, unprofessionalism and dishonesty. The food quality and quantity declined; residents were rarely taken to the dining room; evening meal times fluctuated enormously; residents were rarely taken outside; the floor was often left unmanned, with ‘falling incidents’ increasing and with, often, an open drugs trolley where relatives were asked to ‘watch the floor and/or the trolley’. I was told that Mum wasn’t eating and had been prescribed ‘Ensure’, so I visited every day, more or less, and took food for her.
In August, 2017, I was informed by a member of staff that Mum had been taken to the bathroom and had been left alone. She must have stood, unaided, and was found by the fire escape. I was informed by management that this was an isolated incident. I stayed late one evening in order to witness Mum on the stair lift etc. I spoke with night staff about Mum ‘settling into’ the stair lift. I was told she had ‘never’ settled into it. I also mentioned about the ‘isolated incident’ where Mum had gone ‘missing’. I was informed that it was not an isolated incident. Mum often stood and walked unaided. This was also of concern to me as there was no gate or barrier at the top of the stairs and Mum’s room was close to it.
A Best Interests Meeting was called. A local GP arrived at the meeting with a flu jab for Mum. It is in Mum’s medical records and Care Plan that she is allergic. The GP’s flippancy about the effects of the stair lift, and a guarantee by him that staff would be able to react in time, if there was any danger of Mum falling down the stairs, suggested that the GP had little or no knowledge (or interest) of dementia. The Care Worker, on behalf of Essex Social Services, was doing his job. He needed to tick boxes to confirm that there was no ‘medical need’ for Mum to move to a ground floor room, despite a letter from the Head GP at the Surgery, asking that Mum be moved ‘for medical reasons’. My concerns were trivialised and stated as “being blown out of proportion” by Social Services. They refused to provide an Occupational Therapist to assess Mum and, in fact, blocked the OT requested by Mum’s Surgery.
Further, at a meeting with management and a member of staff, I was reminded that other residents (living with dementia) used the stair lift and one, in particular, squealed all the way up and down every day. So that was alright then?
After a long battle, I engaged a Solicitor to deal with the matter. At the Solicitor’s request, I arranged for a private Occupational Therapist to assess Mum. The OT confirmed that Mum should be in a ground floor room and not travelling in a stair lift. The presence of the OT, however, appeared to upset the owners/manager. The Manager was dismayed at the verdict. I am not sure of the reason why. During this time, it had been suggested by management that, perhaps, Holly Lodge could no longer ‘meet Mum’s needs’ and there began a period of threats of eviction.
Staff informed me that Mum would be hoisted once she moved to the ground floor. I had been assisting Mum to stand and walk over the following 2 weeks, having been shown the correct procedure to assist. This procedure was not adopted by many of the staff at Holly Lodge. I recorded Mum walking freely to her room (some distance) and, occasionally, returning, shadowed by me. This didn’t appear to be well received by staff or management. A couple of members of staff were often rude to me. One particular member of staff would react when I asked for help, or even for a spoon to feed Mum (as I was not allowed in the kitchen). “What do you want now?!” or “You’re a f***ing pest, ain’t you love”. Some members of staff often intimated “if you aren’t happy … why don’t you move her?” There was a constant threat of eviction, and a letter sent to Social Services regarding a requested increase in fees, suggested that if the fees were not paid and back dated, then Holly Lodge may no longer be able to accommodate Winifred Dey.
My recording of Mum walking with the frame was shown to the Occupational Therapist and to the Care Worker at Social Services. Despite the atmosphere at Holly Lodge, I was constantly considering Mum’s ‘best interests’ and, therefore, I offered to have a meeting with management and discuss the matter with mediation. My offer was refused.
Mum was eventually evicted in July 2018 and has been moved to a wonderful home on the Isle of Sheppey, Kent. I am delighted to find this little pocket of excellence. It is a much longer journey for me, but I have enough confidence in this home that I won’t need to visit every single day. The food is very good so I just take ‘treats’. It is very well led. There is a huge activities programme, headed by an excellent AC. They employ highly trained staff and they aim to maintain independence, where possible. Mum has been encouraged successfully to feed herself (taking into account good and bad days) and she is beginning to stand again, occasionally, without assistance, having been wheel chaired for so long previously. My aim is that she is able to transfer, at least, in order to partake in more of the trips on offer at this home. This home is rated ‘good’!
The CQC awarded ‘good’ in every category to Holly Lodge last year, despite apparent complaints. My experience is quite different. Care is good but training in dementia and handling needs to be updated. (Staff often shout at residents (living with dementia) as if they can remember what they have been told; it is poorly led; activities are almost non-existent and, quite, frankly regarded as unimportant. The board on the wall sets out a whole host of fictitious or impractical activities; understaffing; food quality and quantity is often poor in the extreme. The ‘unannounced’ CQC visit was clearly taking place just before Mum left. There were signs of it everywhere. The ‘best china’ came out! I don’t know the result but it must have been ‘good’ because an influx of new residents arrived shortly thereafter.
Because of my experience with Mum, I strongly believe in installing CCTV cameras in all care homes throughout the UK.
Joy Dey is a performer and recording artist, living in South East Kent, United Kingdom. She is currently working on several books, one of which will likely eventually contain a version of this piece. At the time of posting (August 2018), Joy’s Mum, Winifred, lived in a care home, where Joy visited almost daily. Winifred was diagnosed with Alzheimer’s in 2008.
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Image copyright: Joy Dey