Moving into a care home

After 50 years of living with MS, Judy Graham shares her honest, emotional journey into residential care

Everyone was horrified when I said I was going into a nursing home. “You’re far too independent,” said a friend. “You won’t fit in with the routine,” warned another. “You’ll lose autonomy,” cautioned a third. “I’ll fight to keep you out of one!” swore my companion David.

But the most worrying response came from my devoted Albanian carer Linda who knows a thing or two about nursing homes from having worked in many bad ones. “Please don’t go!” she implored me. “You’ll hate it!”

But I was getting worse. After more than 50 years of multiple sclerosis (MS) (first symptoms at 15, now 78) I had reached the stage where I needed help with almost everything. Linda could only do days and David was getting too frail to do nights, even though he was still willing. “It’s a privilege to look after you,” he would tell me at 3am.

I could have hired a night carer, but instead took the drastic, life-changing and hugely expensive decision to go into a nursing home. The upheaval and emotional fallout would be off the scale.

A family decision

My son Pascal was worried about me. We had reached that stage of role reversal when the child becomes the parent and the parent becomes the child. He insisted that I go into a nursing home as near to his Oxfordshire home as possible – the guaranteed 24/7 care would give him peace of mind.

This plan had the huge added advantage of me being able to see much more of my two adorable little grandsons, Kylian, 2 ½ and Declan, 6 months.

Rejection and redirection

And so, the search for the right nursing home began. A new one, only three minutes from his house, seemed ideal, with pleasant rooms and perfect ensuite wet rooms. Pascal and his wife Madeline had a look round and were impressed. But first I needed to have their Care Needs Assessment. I thought it was just a formality. I was wrong.

In the assessment I was too honest about my condition. So, I failed. They told me, “We don’t feel we can meet your care needs.”  The brutal rejection shocked us. Can nursing homes do that? I would have to tread more carefully next time. It now became a case of fighting to get me into a nursing home. What if no one would take me?

We soon found another nursing home nearby. But my heart sank when I looked at their website and watched their video. The feel was corporate, the rooms were small, the beds narrow, the furniture shoddy and the shower rooms unsuitable. I would be utterly miserable there. It was a No!

Finding the right fit

And then Pascal came across a nursing home a few miles further away. It boasted glorious grounds and views to die for (or possibly with). I could imagine my grandsons playing happily on the enormous lawn. Above all, it had an ‘Outstanding’ rating from the Care Quality Commission – a rare accolade.

The manager Sharon was a breath of fresh air – flexible, down-to-earth, and eager to oblige. Her mantra is, “We run this home for the benefit of the residents, not the other way round.”  Some homes are the exact opposite.

I passed her Care Needs Assessment. Phew! We all breathed a sigh of relief. I boiled down my belongings to eight big bags and a bookshelf, tearfully hugged my loved ones goodbye, and moved in. My room had serene views across green fields, sometimes with horses.

A new care team

I was soon to meet the cheerful team of carers and nurses who would be looking after me. They came from all over the world, with a spattering from the UK. We would get to know each other intimately. Very intimately.

Rapidly, I had to throw out of the window all shame and embarrassment about personal care. At first, I said no to male carers, but swiftly changed my tune as it’s much easier for them to haul my sack of potatoes from bed to commode and back again. Harder for the female carers – unless it’s the tall, strong and wonderful Daniela from Croatia. The other morning sweet Indian carer Annu, light as a feather, came to help me to the commode. No chance. So, I’m glad when male carers like Bogdan from Romania or Shinto from India come to heave me and pull my knickers down.

Living by the buzzer

Wakey wakey time is 7.20. Far too early for me! But no choice. Life’s easier if you’re in step with the home’s routine. Out of step gets you nowhere.

The system here is that when you need a carer you press your buzzer. It sets off an alarm that beeps, flashes red and your room number pops up at the control centre down the corridor. It’s a game of fastest finger on the buzzer.

And then you wait. I’ve been used to the luxury of 1:1 care. Here, the ratio is one carer to five residents. “Sorry I can’t give you one-to-one care” apologises Romanian Tannia looking a little frazzled. “But I’ve got four other residents to look after at the same time!”

The aim is to get a carer to you in five minutes. But at busy times – getting up, mealtimes, going to bed – it can take 15 minutes or longer.

But even when a carer comes, you don’t always have their undivided attention. They wear an intercom device so the supervisor can issue orders. “Two Weetabix to room 23!” It’s sometimes a tossup between me and the Weetabix.

When you go into a nursing home, nurses take over full responsibility for giving your medication – even if you’re perfectly capable of doing it yourself. Unless you prove you can do this, you lose this element of control over your life.

The nurses also take charge of anything else you take – in my case a bucketload of supplements and a few herbal remedies. The Jamaican nurse Novlet had never seen anything like it. “What am I supposed to do?” she gasps in dismay at the dark bottles. I tell her.

Later, the doctor arrives for his round. I tell him my repeat prescriptions are all missing from my NHS app. “Don’t worry,” he says. “The nurses do all that for you.” I’m not happy to relinquish this much autonomy, so I ask for them to be put back. It’s agreed without argument.

So, were the nay-sayers right? Yes, you do have to fit in with the nursing home’s routine, but it’s not that bad. Yes, you do lose autonomy unless you stand up for yourself. Also, living alongside other residents takes some getting used to – the beeps and strange sounds can disturb you at night.

But for me, the hardest thing has been the sometimes long waits for a carer to come when it’s urgent. My bladder can only hold out for so long. I talked to Sharon. Straight away, she made sure a carer checked on me every hour or two. So far, it’s working!

The wrench from home remains painful. The fees make me wince. But how I love the visits from my two gorgeous grandsons!

When you go into a care home you are surrounded by other residents and become very vulnerable to any bug floating around. At the end of May we were affected with the norovirus that makes you vomit and gives you diarrhoea. I heard that several residents were stricken. As I don’t mingle, I thought I was safe. But I went down with it too. So did many of the staff – their full protective clothing and masks making no difference. Then we were short-staffed and the waits for help became longer. After a few days I got over it, but was scared at how vulnerable I was as you can catch it again and again.

In a home you are all in it together. Shortly after the norovirus, a resident fell on the floor one night. As a result, to keep everyone safe, the night staff were asked to ‘look in’ on all the residents every two hours. This meant opening a noisy door, letting in the bright light from the corridor, and asking if you were OK.

Being woken up several times in the night to check whether I was on the floor was absolutely not OK! I made a big fuss. The manager said, “we’ll do what you want”, and – for me – the nightly checks stopped.