“I’ll go into a home as soon as I can’t take care of myself. I don’t want to be a burden on anyone.”
Of course you will! Of course you don’t! And yet…
I’ve seen two generations – my gran and my mum – both say that. Both were determined to show that they could still take care of themselves, way past the point where their lives at home had become far too difficult to sustain.
Both of them had spent 40 years in their own houses. My gran was in a tiny two up, two down terraced, built as part of a groundbreaking social housing project in the 1920s, with a bathroom and a plot to grow your own vegetables. My mother lived in a four bedroomed modern house, and she used all of them for her art projects.
My gran was fit as a lop, and could easily walk a mile into her 90s. Her problem was that when she got there she forgot why she’d set off. She could do a fine job on social services, convincing them she was doing brilliantly, making them a cup of tea and giving them home made biscuits. But if they’d looked in the fridge they’d have found a bag of washing, and in the washing machine there were mouldy apples. Upstairs the two rooms were packed with piles of Crimplene dresses from jumble sales, all too small. And probably a pound of sausages.
My gran didn’t want to leave her little house, but once she moved into the home she blossomed again. She had people around her to talk to and to make sure she ate properly. We – and she – were very fortunate.She went to live in a lovely home in central Middlesbrough, not far from her house, with people she knew. She had worked on the ambulances during WW2 air raids – a dreadful job that involved removing body parts from bomb sites – and was given a free place in this rather exclusive Council-run home, for her services to the town. She helped the less physically able residents, and was sent off for the shopping – as long as she stuck to what was on the list.
My mother was different; she had Parkinson’s. Her house was tidy to the point of obsessive; she used cleanliness to show that she could look after the place herself. But if she fell over – which she often did – she could be there for hours because she didn’t have the strength to get up. Her great love was painting complex watercolours of everyday scenes, populated with teddy bears. Once she was unable to control a brush precisely, she took to broad stroke flower paintings, but that became impossible too and she spent a lot of the time just crying.
After a particularly bad fall when she banged her head on the pavement kerb, she was in hospital, then a rehabilitation unit, for months. Social Services then had her on their records and she wasn’t allowed home until there were bars fitted for her to hold on to, and she’d passed the tests to show she could cook. She was also sent carers to dress her and put her to bed.
My mother had imagined that carers would sit with her, have a chat and do all her shopping – the kind of thing that her friends and family did when we visited.
What really happens with social services care is that someone on minimum wage has five minutes to whip off your clothes, stick your nightie on and bung you into bed before dashing off to the next one.
We were very lucky that my dad had saved more than he spent of his office manger’s wages. This was to take care of my mother in case she was left by herself. It meant that for a while we could pay for a private carer to come in three times a day and cook her meals, sort out her mountains of medication, get her in and out of the shower, empty the commode, dress and undress her. She even did the laundry, which my mother complained about because she’d never experienced fabric softener before and was convinced that her vests were still damp because they weren’t hard and crispy when they dried.
But this was unsustainable; it was ripping through the savings, particularly when my mother insisted that someone stay overnight with her, every night, to help her out of bed when she wanted to use the toilet.
And still she maintained that she was managing perfectly well without any help from her two daughters. (Although I was there five days out of every fortnight, greeted with a list of tasks as long as my arm each time I turned up.)
Finally my mother asked my sister and me to arrange a place for her to live. She said she couldn’t bear the thought of another winter there by herself, so would we please find her a nice place in York, close to her grandchildren.
(We found out later that she’d told all her friends that we were forcing her to leave her own home, in order to get them to feel sorry for her. We found out lots of things later that she’d said about us, but that’s another story. But we did wonder why we got such scowls from her neighbours when we visited…)
Briefly then, she moved to a home, the one which everyone in York recommended, and lived there for three years. It was an immense relief to know that it was someone’s job to look after her, and that if she had a fall, there would be people to pick her up.
So for five years things were very tricky, but we were fairly lucky the way it turned out.
That time when you realise your parents can’t quite look after themselves, but they aren’t going to admit it – that’s the difficult part.
And many of my friends were going through the same thing, or had just been through it, and some are going through it now. Two of us considered setting up our own residential home so we could do it better ourselves. One thing I’ve observed is that the difficult part if bad because it’s uncertain. You’re trying to do what your parents say they want, but you know you’re probably going to have to make a tough decision and get through it.
These are some of the things that our family learned that might come in handy:
- Once you’ve made the decision, your parent(s) might still kick up a fuss, but their weight off your own shoulders is going to be huge. I’ve seen my friends change overnight from being loaded down with worry, to deciding that it just has to happen, getting it done and looking ten years younger again.
- Once it’s decided, your parents might secretly thank you for having decided for them. my gran was delighted that she no longer had to keep up the pretence of being able to look after herself.
- If you can do it with helpful stating of the facts and without coercion, everyone will feel better about the decision. My mother was still driving into her 70s, but scraped the car every time she took it out. We were terrified that sooner or later she would kill herself or someone else, but didn’t we want to play the hard guy. We compromised by pointing that that taxis were cheaper than repairs to the bodywork. Finally she had a good reason to give up driving and the roads of South Tyneside became a lot safer.
- Get the power of attorney set up now, so you can handle your parent’s financial affairs if they can’t do it themselves. Explain that you aren’t going to take their control away, but that if something went wrong, you’d be able to step in to help.
- Everything your parents say they will or won’t do in future changes when the future arrives. Our mother used to declare that she would never ask us to help her to go to the toilet. She forgot that pretty quickly.
- See if you can visit your parents’ doctor with them. Doctors often talk a great deal of sense that your parents will listen to, but choose not to tell you. My mother’s doctor had been telling her to look at care homes for years. She told that doctor that we wouldn’t allow it.
- Take personal recommendations about care homes from people who have relatives there, as well as those who live there. Drop in and ask to be shown around. If you’ve got friends in social services, take their advice too.
- If a person’s memory is unreliable, they can tell you untruths which seem completely believable, because at that time they are totally convinced they are true. My mother declared she hadn’t been fed for three days, but her lunch was sitting on her table at the time. She’d forgotten to look down.
- On the other hand, some outlandish things turn out to be true, so you still have to look into them. The story about the squirrel jumping through the window and terrifying her – that actually happened.
- Parents can sometimes use those close to them as servants. You might need to find a way to prevent this taking over your whole life. My sister was spending so much time doing my mother’s endless list of chores that we decided to pay a lovely woman to be her friend and do the running around instead. (She was so good that the care home recruited her.)
We’re all different, and we all have individual relationships to our parents, so if you have something to share, please do join in.