Saturday, November 02, 2013

Care & Familial Responsibility

When I wrote Why does disability make people more vulnerable to domestic abuse?, I talked about how carers are often seen as universally saintly and this can mean that it becomes harder to question whether they're doing what they should be. There are other, related effects. We praise carers, but - as with the sanctity of motherhood - believing that people are endowed with magical powers of patience and wisdom, we tend to stop supporting them (what could a mere mortal do to help?) and certainly don't value what they do in any material way.

The week before last, Jeremy Hunt gave a speech vaguely advocating that families care more for their elderly - that we should aspire to be more like cultures in which care homes are "a last resort." This is so cynical, it makes my skin crawl. Then the lovely Glosswitch wrote about caring for her brother, and her fear that her caring role will increase as her parents age.
What are the rules for caring for a sibling, anyway? I'm not sure but I've always felt they must be different to those that apply to parents or offspring. Indeed, I've often hoped I'd find them written down somewhere: 
Rules for Caring: 
• children – definitely 
• partner – of course 
• parents – probably 
• grandparents – maybe 
• siblings – siblings? Who do you think you are, Mother Teresa? Surely everyone draws the line at siblings, not because we love them less but because it's just too hard.
So I really want to talk a bit about care and familial responsibility. This post is a little epic and Glosswitch's bullet points won't be the last.

Apart from any kids who you brought into existence, I don't believe you're responsible for any family member just because of blood. Yet we're all responsible for the people we love, for people who have loved and cared for us, and that's the same whether they are blood, related through marriage, or our close friends. If you love people, you need to look after them as best you can, whatever that entails.

But that doesn't mean that you should ever have to perform care. Two things worth mentioning before we go on:
  1. Here, I'm talking about responsibility. Sometimes, people have no real choice about becoming a carer and that's a terrible thing. This post should demonstrate why this choice is essential.
  2. Fortunately, most people never even face this prospect. We're sometimes presented with a picture of old age where everyone needs round-the-clock care. In reality, most people grow old and remain independent until death or shortly before death. Hooray! 
Right, back to what happens when folk do need care..

Granny Kelly told me a story about when her own grandmother, who lived next door, was sick. This was the 1930s and my great great grandmother had a morbid fear of the hospital - everyone she knew who had gone in alive had come out dead. So Granny's mother cared for her bedridden mother, whilst running her own home and bringing up her three children.

One day, Granny's aunt came to stay with the old lady and give Granny's mother a rest for a few days. The aunt didn't even last to midnight, before she came round to Granny's mother's house, knocked on the door and begged for her sister's help. She could not cope with her poorly mother. She could not perform care. She had to go home. So she did.

This is the first reality of care within families: Some people are extremely ill-suited to this. I could look around my family now and tell you who would do well caring for their parent, partner, sibling or child should they become disabled  (I could tell you some of these things from personal experience).

This is not about how nice people are or the quality of love in their hearts.

Although needs vary, I'd say a typical carer needs to be pretty good at
  • Working to a strict routine; meals at these times, drugs at these times, the same every day.
  • Being able to rest and sleep during breaks, as opposed to the one long break most people have from the end of work in the evening to the beginning of work next day.
  • Flexibility. All plans may change.
  • Not getting easily bored.
  • Not panicking in a crisis. 
  • A certain kind of detachment when it comes to bodily fluids, effluent, injury and nudity.
  • Respecting the inherent dignity of a human being, even when they are helpless.
  • Reassuring people.
For some people, in the right circumstance, this stuff comes quite naturally - I've written before about how tasks we could define as "care" can merge with the natural teamwork that takes places within a partnership or family. But people and family dynamics vary hugely.

Take reassurance as an example. This is an essential skill for many carers; people often need reassurance when they're distressed, confused or in pain - let alone when they're having symptoms that will one day kill them. And that isn't something that comes naturally to everyone. If you think about times you've been in a real panic, then think through your friends and family and consider how many you're bloody glad were nowhere in sight. Some very lovely people have a habit of pouring petrol onto flames.

This doesn't mean that people can't or don't learn new skills - people often do. But if they can't, you're looking at a very miserable carer and very poor quality of care.

And that's plain old innocent aptitude. There are loads of families - there are elements of this within my own - where there's a great deal of talk of love, charity beginning at home, doing anything at all for one's nearest and dearest, but a complete lack of action or support when help is really needed.  Some people find illness in others irritating and lose patience when their partner has a cold, let alone something more long-term. In fact - as anyone with chronic illness will have learned - many people just don't have the stamina for any kind of problem that goes on and on and doesn't have a simple solution and a happy ending.

It would be great if everyone acted in the best interests of the people they love.  However, when they won't, insisting that they should does no good to a disabled or elderly person (nor indeed, does reminding them that their family could function differently).

Then there's the fact that some disabled and elderly people are extremely difficult to deal with. Some people who require care aren't pleasant people.  Some parents have given their children a lifetime of ill treatment before needing help in their old age. Others are decent caring folk who nevertheless become ill-tempered and demanding when living with illness, pain and impairment. Just as some people don't cope at all well with care, many people cope very badly with needing help, and find it much easier to snap at family members than they would at a professional performing a paid service (a professional who could resign their position if they feel mistreated).

And that's before we talk about conditions. Caring for someone with severe autism is very very different from caring for, say, someone with muscular dystrophy. Meanwhile, most conditions effect different people very differently - coping with someone who has profound dementia but is cheerful and co-operative is a completely different kettle of fish to dealing with a loved-one who - through no fault of their own - is now aggressive, even violent towards you.

And all of this is before we talk about what is practically possible. My Gran has four children, ten adult grandchildren and a few adult great grandchlidren (she is a great great grandmother), most of whom live within the same town. But when her health deteriorated, there was nobody who could take on a full-time caring role. There was nobody who met the following essential criteria:
  • In possession of a house with a spare room and bathroom that was physically accessible to Gran or
  • Able to practically move into the small spare room of Gran's bungalow.
  • Not working or studying full-time. 
  • Not chronically ill.
  • Not on the list of people Gran strongly disliked and mistrusted even before she got dementia. 
  • Not on the list of people Gran had so deeply hurt or offended, they may not show at the funeral.
So my Gran went into a care home. It was the last resort, but really, it shouldn't have been: my Gran suffered a series of falls at home, including one where it seemed clear that she had left the gas on, had later smelled gas and had fallen in her hurry to leave the house. The general feeling was that Gran would suffer a great deal leaving her home and she would stubbornly resist. In fact, she adjusted to it in the blink of an eye and quickly became happier than we've ever known her. She's currently insisting that she is engaged to another resident of the care home, although she's forgotten who that is.

Of course, this isn't the way things are, but our experience. It would have still been the right thing to do even if she'd hated the care home - she was made safer, and none of us could keep her safe otherwise. No amount of love or concern keeps someone safe when they really can't be left on their own for any period of time.


So, what if you love someone who needs care but you're not in a position - whether through personal, practical or financial reasons - to perform that care? Well, the great thing about care work is that it can be performed, to a very high standard, by professional people. But (a) someone has to make sure that's happening and (b) good care only gets you half way to good quality of life. There are a thousand things we can do to support our disabled and elderly loved-ones and their carers (paid or otherwise) without ever having to see them naked.

People often fail at these things for a few different reasons:
  • The sense that anything done to support disabled people is a tremendous chore/ act of charity. 
  • Guilt. I feel guilty I can't do more, so I'll pretend there's nothing I can do.
  • The thing mentioned above about problems that go on and on and can't be fixed.
  • It really is easy to get on with my busy life and let time (and good intentions) fly by.  
  • Generalised squeamishness about age, illness or disability.
  • If I can't be the hero of the hour, I'm not playing the game.
Jeremy Hunt talked about loneliness, but as Aditya Chakrabortty pointed out, young people are more likely to be lonely than older people. Disabled people of all ages, especially those not in work, are much more vulnerable to loneliness than say, my Granny Kelly who at ninety, keeps a calendar jam-packed with family visits, trips out with friends, concerts and church events.

But receiving good quality care is a necessary but not a sufficient condition to a disabled person avoiding loneliness and having a good quality of life. We all need to look after one another, best we can. 


Louna said...

Thank you! I'm not a carer. I had to dress my grandma once, in an emergency situation, and felt really uncomfortable (though somehow changing my nephews' diapers was never a problem). Later I performed some low-level care for a week-end (mostly cooking, emptying the toilet-chair, bringing stuff...), but although I did my best, when she needed this kind of help again for a few weeks she called on my sister. I felt bad, because she's my grandma and I felt an obligation, but my sister said that it's okay, I had done a good job but it was clear that it was difficult for me and natural to her. I'm glad you acknowledge this, that not everyone is good at being a carer, and that this is okay. We all have our strengths and weaknesses.

The Goldfish said...

Thanks Louna,

I also think that acknowledging this truth is part of how we come to terms with disability - it's all about strengths and weaknesses. Most of the folk I know who require physical care also look after people, if in entirely non-physical ways.

Never That Easy said...

So well put - you know I have a complicated history with this subject (being both a giver and receiver of many different kinds of care, at different points in my life), and I think you touched on so many important topics. The idea that it is not a failing if you can't provide appropriate care is something that people don't always even take into consideration.

Becky said...
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Becky said...
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Becky said...

There is a great book out by Johann Christoph Arnold titled, "Rich in Years." I know that being a caregiver isn't a strength for me right now. However, I think there are other ways to help and that is by comforting and encouraging her. This book has done a great job at teaching me how.

Unknown said...

Good advice, Becky. You're so right. Not everyone is ready to become a caregiver, but we can all love and encourage those in need. Well said! I will check out Rich in Years as well. Thank you.

Becky said...

Thanks Terry! I hope you enjoy the book as much as I did.