Caring

Readers of this blog may be wondering how the course on ‘How to retire’ went. I don’t know: I wasn’t there! My mother (87) had a day-case operation on her eyelids (the problem, for those of a medical inclination, was entropion) and although the recovery seems to be fine, it has had knock-on effects on her other health problems, so she is still at our house rather than in her flat 5 minutes walk away (walk for us, that is – she can’t make it that far without a lift). Between bursts of email and writing, I’m doing a lot of administering of pills, eye drops and ointments, plus food serving and personal care. Being organised, she had phoned the district nurses to do the medications on the day of the retirement course. However, that plan had to be abandoned as there was just too much wrong with her for her to go home when planned.

My mother is the other aspect of why I’m retiring, the aspect I haven’t mentioned until now. It’s complicated.

Care in society

You’ll probably agree with me that the care of older people is one of the real gaps in our society. My auntie died 18 months ago in a ‘care’ home. She lived at home until she was 100, with various carers of various levels of ineptitude coming in every day and filling in forms (‘On arrival Miss R was sitting in her chair. I pulled the curtains and made a cup of tea’ – honestly, filling in repetitive forms like this was pretty well all they did apart from pull the curtains and make a cup of tea. Many of them couldn’t even use a microwave to warm up her lunch). What kept her going was a visit every weekday from the young mother who had been her cleaner and then her paid carer until it wasn’t enough and she had to have more visits. She was warm, funny, and chatty. My auntie loved her. Then after yet another one of those ‘Panic, press call button, get paramedics, go to A&E, get sent home again’ scenarios, she was advised to recoup in a care home for a bit. She knew which one it would be – her choice, based on someone she had known who had been there. And she never went back to her own home.

I hated the care home. Auntie’s room had a fine view of the rubbish bins. They didn’t understand her problems with swallowing so the mushy food sometimes had little bits in it which she would try to pick out. They would leave uneaten unappetising ‘meals’ beside her for hours and hours – until the next one turned up. Her drinks had to be thickened but the staff all had different ideas about how thick to make them. She was adamant that I wasn’t to complain (although after her death, you bet I did). There was one excellent member of staff, but if she was off duty, nobody would even come and sit with auntie for a little chat. Sometimes they would wheel her out of her room for some ‘entertainment’. If she was at such an event when I came to visit – some local person who thought they could sing – she would immediately ask me to take her back to her room. The look of gratitude on her face for this made me very glad I’d turned up when I did!

It was probably a great place for people who are mobile, eat normally and are tone-deaf.

I invoked the long-arranged power of attorney. I discussed my concerns with my auntie. I looked into how long the money would last, and auntie reluctantly agreed it would be more sensible to sell her flat than to let it struggle through another winter; she had never installed central heating, and the windows were rotting. I checked out care homes near to me, but there was nothing I could do, because she was frail and she didn’t want to move. Her lovely former cleaner was still visiting her nearly every weekday, and was being paid to take away the washing, and auntie was adamant that she ‘didn’t want to be a nuisance’ and would rather have a paid relationship of care rather than rely on family. She died just over a year after she went to the ‘home’. She went through a depressing series of chest infections treated with different antibiotics, which made her feel even more low, but it was all pointless.

Care in the family

My mother, not surprisingly, doesn’t want to go into residential ‘care’. I’m not sure how she’d find it; the food wouldn’t suit her limited but idiosyncratic diet, although I think she’d like more people to talk to. However, she doesn’t really enjoy the company of old people. She prefers people of my age or younger, but of course they tend to be working or caring for children. There’s no reason why, when you get to 80, you should have a taste transplant and suddenly take to singalongs, perms and cardigans.

So we struggle along. The reversal of roles isn’t easy for either of us. We get fairly cross with each other. She veers from ultra-dependent, which reminds me that she was the baby of her family, to ultra-controlling, as she tries to reassert the maternal authority she never wanted to lay aside. I know I’ll be just the same. Sometimes we are on the same wavelength and it’s fine. We have some interests in common and we do have some very giggly times; just not many at the moment. My husband is very patient and entirely heroic; he even takes her shopping because she does love supermarkets, though getting her around them is a challenge.

Care and the day job

And work? Right now, when you get an email from me, you never know if it was interrupted to sort something for my mother. Some days, it will be impossible for me to do anything creative; just doing routine stuff will have to be enough. There’s nothing here (apart from the very uncomfortable role-reversal) which will be unfamiliar to the parent of a young baby. However, when you have a baby, you can take maternity leave. When your mother is in need of more care, you are supposed to struggle on and cope. When you have a baby, it gets better gradually. When your parent is getting older, it doesn’t.

In the last REF – that curse of the UK higher education system – there was a system of mitigation that worked out as one baby = a reduction of one in the number of scholarly outputs required in the period being assessed (a book, an article, etc). Various other possibilities were also discussed as part of the equality and diversity considerations: ‘the arrangements for enabling staff whose circumstances had constrained their ability to work productively throughout the assessment period, to be returned with fewer than four outputs without penalty in the assessment’. Caring for elderly and/or disabled relatives did feature here.

But I felt there was a lack of realism in how seriously the issues were taken. As part of my university’s preparations for REF2014, we had to work through a series of imaginary cases. If I can remember these now, they ranged from a woman scientist whose pregnancy meant she had to put her research on hold because there was some evidence that the chemicals may affect the unborn child, to a parent with an anorexic daughter. When I did the training in which we encountered these cases, the other staff in the room were of a similar age to me. All of us focused on one particular imaginary scenario presented in which a person was claiming that the care of their elderly relative had affected their research productivity. The correct answer in this scenario was no, the person must still enter a full slate of 4 research outputs, because their relative was in a care home. The fact that this doesn’t exactly solve anything – that there will still be calls from the home summoning you, that your relative may constantly go back and forth between the home and hospital, the sheer stress of worrying about their care – none of that was supposed to count.

Those of us at the training event asked about what happened if your relative was in your own home, or if you moved in to care for them. Apparently that could conceivably get you ‘let off’ one output. Possibly. If it affected you ‘throughout’ the assessment period. With detailed diaries and sufficient medical evidence, etc etc. I’m leaving before the next REF so I won’t need to be arguing this particular case. And when I’m retired I won’t need to do quite so much juggling of roles.

The future of care?

Just as I’m about to leave, my university has set up a network for carers, including  a sub-group on ‘support for staff who care’. It’s a great idea, acknowledging that many people do have these caring roles. However, the network seems to exist partly as a way of gaining research funding: its aims include to ‘work together to submit bids for external funding’ and to ‘conduct research projects’. REF again??

I know of people who have decided to leave their job rather than go on juggling. Well, from one perspective, that will be me, too. A bit of sympathy from a line manager goes a long way, and having a colleague in a similar but even more complex parental situation has definitely helped me – just talking about it makes me realise that it’s OK to feel like I do.

I suspect that the best support is local support. I sometimes feel very isolated even though I know anecdotally of many other people in my situation. My husband pointed out that people with young children have babysitting networks and local Facebook pages where they can ask if anyone can mind the baby for an hour while they go to a doctor or something like that. A network of people who understand what it’s like, who can pool their experience, and who can step in if there’s an emergency would go a long way to help the many people who are in caring roles. As would employers – in my case, universities – who really understand what it’s about.

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