I wanted to find the best care home for my mum after a major stroke meant she would need help 24 hours a day. It’s now two years on but I feel 10 years older. Here are a few of the things I’ve learned:
1. You’ll be somewhere between braveheart and broken heart
I’ve never experienced anything to compare with the pain of listening to my mum’s distressed or frustrated voice and knowing there is nothing I can do to help. I feel guilt ALL of the time. I don’t have kids but I now understand the compulsion that parents have to move heaven and earth to protect their progeny – it works both ways.
Mum initially spent three months in an NHS stroke unit which was itself attached to a private care home. During her time there she believed she would be returning to her own home when she recovered and the staff encourage this in order to motivate patients. My brother and I quickly realised, however, that the chances of mum regaining the use of her left side were pretty slim and that she would need 24-hour care.
Neither of us lived in the city so we started asking around for recommendations and I compared the ratings on the Care Quality Commission (CQC) website. We made a shortlist and went to look at three homes which quickly became a choice between two. Without notice the stroke unit announced there was nothing more they could do for mum. A social worker told us that our first choice had been put into special measures and was not allowed to take new residents. This was a shock – it had been a beautifully presented care palace but it was failing. We took mum in a wheelchair taxi to see our second choice and, still reeling from the news that she was not going home, she agreed to give it a try.
At first I bulldozed my way round the new care home. I demanded that my mum’s bell be answered when she was left waiting and complained about staffing ratios. Gradually reality set in and I realised that the home we had found was as good as it gets and much more comfortable than most. I’ve learned to wait before I complain, to answer her phone calls with a bright voice to keep her calm, to lower our expectations. I know she is safe (enough), fed, cared for and that I have done my best – but it’s hopelessly inadequate compared to the life she had.
You only become a resident in a care home when you absolutely must have 24-hour care. It is not a lifestyle choice that anyone would make if there was an alternative. Residents lose their independence to varying degrees but the routine of getting everyone through the day inevitably takes over and the residents quickly become institutionalised. In my mum’s case she is physically dependent on help to get her up, move to her wheelchair, go to the bathroom – and with no movement down her left side even a drink or the TV remote placed out of reach can send her into panic.
As our parents age they can become set in their ways, impatient and even selfish. It took me some time to realise that staff were not ignoring my mum’s bell when she needed the toilet – they were just in the middle of something else and she had to learn to wait. Some days, she won’t like the food; some days she’s harassed by other residents trying to get into her room; sometimes her Kindle Fire, her electric wheelchair or her mobile is out of battery. It’s all part of the daily grind but each minor complaint hides the underlying frustration that she is no longer in control of her own life.
2. Social care is in crisis
There is a crisis of funding in UK care homes. A report by The Independent in November 2015 outlines the falling profits of the major care home providers in the UK: “A cash crisis facing care homes across the country could see a collapse of residential care within five years.” Many providers came into the industry to make a profit but this is proving to be harder than they expected. Cash-starved local authorities cap the rate for funded residents well below the rates paid by self-funding residents.
The Alzheimer’s Society predict that, if current trends continue and no action is taken, the number of people with dementia in the UK is forecast to increase to 1.1 million by 2025 and more than 2 million by 2051, an increase of 40% over the next 12 years and of 156% over the next 38 years. We are walking into a perfect storm with demand for care far exceeding the facilities available.
3. The care home you are looking for does not exist
The CQC rates lots of care homes as ‘Good’ and it seems to me this is the minimum you should accept in an inspection rating. ‘Requires Improvement’ means exactly that – so go elsewhere. The few that qualify for Outstanding status are often specialist nursing facilities.
The distinction between nursing and residential homes needs, itself, some explanation. Residents like my mum who need 24-hour help and most of the residents with dementia are all in the ‘residential’ section of her care home even though they are suffering with debilitating conditions. The difference is that staffing levels on nursing units will be higher with a trained nurse on duty. There is NHS funding, called ‘continuing care’ for people with complex nursing requirements, but this is notoriously difficult to obtain.
Two years on I continue to compare ratings on the CQC website hoping to find an ‘outstanding’ care home that I can move mum to. The one that has excellent ratings, a full staff quota, separate facilities for those without dementia, wonderful food, is conveniently located and affordable. I haven’t yet found it. I’ve read a lot of reviews, visited plenty of homes and talked with friends –experience has taught me that everyone has to compromise.
Work out what is most important on an individual basis and make a list of essentials so that you can draw up a shortlist. For instance a private bathroom might be less important to someone able bodied than to someone who needs to be transferred on a hoist or in a wheelchair. In my mum’s case she needs space – a small room would not accommodate her wheelchairs, armchair and transfer equipment. For others the style of dementia care or the location might be the main consideration.
There are things you should not compromise on. A kind, safe and caring home is the minimum requirement. If the CQC report is less than ‘good’ on every count DO NOT even consider it. Even when the rating is ‘good’ you need to do more research, visit, ask lots of questions and trust your instinct. If you are not sure about a care home cross it off the shortlist.
4. The carers count
Everyone focuses on the importance of the care home manager, how their role is key in defining the ethos of the home and the quality and consistency of care. This is true, but it is the team of carers responsible for day-to-day care who really matter.
On good days my mum has her medication handled by a senior carer she knows and trusts. On a bad day this is an agency carer who doesn’t know anyone’s medical history or personality. Two more carers take care of the resident’s needs but they are not all equal in their attentiveness. Bad days are long days and leave my mum exhausted and anxious. Luckily they are not frequent but tend to come consecutively when familiar staff are ill or on holiday.
The carers are the ones who really matter. These undervalued men and women work 12-hour shifts for little pay. They are responsible for feeding, showering, personal care, medication, an occasional hug. Help them and become part of the team whenever you can. At mealtimes, for instance, you can help make drinks for the residents (just ask about dietary requirements first).
When I’m at the care home I take my mum to the toilet, trim her nails, give her a bath, cut up her food. I think it’s important that I do everything for her that I expect from others. I know she loves me to look after her and I also think it’s appreciated by the carers. No one wants some woman from London turning up in Yorkshire every two weeks and to look on. If I roll up my sleeves and become part of the team it makes life a lot easier if I have to point out something that isn’t working.
5. Don’t expect new friendships
My brother and I had a rose-tinted vision of our mum at the centre of a gang of old ladies having fun. She used to love crafting and we’d assumed she’d always be able to knit, sew or make her cards. The stroke put paid to all of that. Her friends visit less and less. She has lost the art of conversation. We talk several times a day but it’s mostly about her routine or to say goodnight. After 52 years with my father to kiss her she just wants to tell someone she loves them before she goes to sleep.
My mum has no memory loss or mental impairment but most of the other residents have some form of dementia, which makes it difficult for her to build friendships. She spends a lot of time in her room reading or watching tv. The residents in the lounge argue incessantly so she chooses the peace of her own room. But even this is not safe. Some residents roam, knocking at her door into the night or rattling the child safety gate we put across to keep the wanderers out.
6. Tread lightly
When there is a problem, take a deep breath before you complain. A care home can be a tense, emotionally charged place to work and the carers are often run ragged. If you are reasonable and calm you should be able to sort most things out. Its like a school – if you are the parent who storms in guns blazing you become the problem. It is important that you are heard and that your concerns are taken seriously. If you do need to escalate a complaint you can do it through the Care Quality Commission.