Sunday, June 10, 2007

Rage, Rage Against the Dying of the Light....

I approach the lift in the home mil's sister in warily. Spouse is in the car with the kids, while I am here to pick mil up. The lift is surrounded by three people in night attire. They sway in sync, and spookily say nothing. The lights are on, but nobody is home, nor has been I think for some long time. It feels like a scene from Shaun of the Dead. Any minute now I expect Simon Pegg to pitch up complete with LPs to chuck at them to clear my path....

No 1 thought I was terribly cruel for describing them in such terms. And I know it's horribly black, but quite frankly if I didn't laugh I'd have to cry.

Mil's sister has MS and has been living in the same home for over forty years. She is mentally still all there, but she is surrounded by people like the ones I encounter by the lift. The only reason I think she stays sane is that she is an awkward old bugger (every family should have an Awkward Aunt. With apologies to my nephews and nieces, I fully intend to turn into one in my old age) and makes life difficult for those around her. It's her only weapon in a fight against a world that with every passing year must seem increasingly to shrink and become less accessible to her.

Mil's sister is the main reason we have come to Germany. We are the closest family she has (she has no children), and we're a long long way away. And we can only ever come for the shortest of visits. I can't imagine how bleak her life must often seem. Luckily she and mil have inherited a steely determination for an aunt whose life philosophy was Ich Kann, Ich Will, Ich Muss (I can, I will, I must) - it clearly keeps mil's sister sane and so far has kept mil out of a wheelchair (mil has a condition known as a benign essential tremor - benign only in the sense that it isn't caused by a malignant tumour. The results of it are anything but - she has a dodgy sense of balance, her hands shake uncontrollably and she only walks now with the aid of her pushalong zimmer. Anyone else would have given up the ghost by now. But not mil.)

The trouble with our visits to Germany now is that most of the people we meet tend to meet are elderly and like mil's sister in a poor way. Her home does its best, but sheesh. I think if I ended up like that I'd be tempted to top myself. And while the majority of the staff there certainly look after the residents well, I was really cross with one care worker who bossily broke into a photo session we were having because mil's sister had to have her lunch then and there. It was done with no kindness, or thought, or appreciation that for mil's sister those five minutes were incredibly precious. What did it matter if she was a little late for lunch? I think that attitude sums up the problem with these kinds of places. However hard people try, and however much thought goes into them, in the end the inmates become a part of the system, and lose their individuality for the sake of the bloody system which prevails above all else.

What's the answer? I'm not quite sure really. Because another visit we pay shows up clearly the personal cost of keeping a loved one at home. Mil's best friend and her husband were farmers. Though they have now passed their farm over to a close family member (they too, have no children of their own), they still inhabit part of the huge farmhouse they own. When I first came here they were in their sixties, sprightly, active and running a highly successful farm. Now mil's friend has alzheimers. She doesn't recognise her husband any more, asking him constantly where her husband is. He is saintly beyond belief and shoulders the burden with dignity and courage. But it is sad beyond belief. Though she briefly comes to life when she meets mil, and this year seems to remember me (last year I was constantly asked if Spouse was my husband, despite her having been at our wedding, and my having stayed in their house several times). The overwhelming impression we have is one of two lonely old people, who are eking out their days in a quietly tragic fashion. If anything would make you want to rage against the dying of the light, it's that...

It's not that I think this is a problem specific to Germany - it is simply we get a huge concentrated dose of the problems affliciting the elderly when we come here - but I think it is one that affects the West particularly. We don' t care for our elderly at all well. We give them scant respect, and are often impatient with them. If they end up unable to cope we shove them in homes which in many instances aren't fit for a dog. Ok, that's probably an exaggeration, but I was horrified when fil spent two weeks in a home (highly recommended to us by the social worker who organised it for us) to allow mil some desperately needed respite care. There were members of staff who seemed to care, but for the most part they were indifferent, and far less considerate then their counterparts in Germany. Fil wasn't eating a great deal at that stage, and he was also slightly confused and bewildered. No one made any attempt to bring him out of himself. Or feed him. I came to see him several times and found food sitting congealed on his plate. Sometimes I think they even took it away, completely untouched. He developed an ulcer while he was in there, and despite several requests, he only managed one bath.

Poor fil. It was only a month before he died, and he was very grumpy. So they dismissed him as a diffcult old sod and didn't care. Or worse, patronised him as if he were some petulant little child. I wanted to smack them. The things he had done in his life. The courage he showed under fire. The brave moral decision he and his colleagues took at the end of the war not to repatriate Yugoslavian refugees. And these people treated him like he was an idiot. It made my blood boil and still does.

The old are the advance guard. We walk in their footsteps and if we are wise ourselves, learn their wisdom. To see them reduced to gibbering zombies is maybe inevitable in some cases - we cannot, for example stop a disease like alzheimers - but if only there was a way to motivate people better, to keep them engaged and interested in life, maybe we could manage care of the elderly better.

We couldn't make it any bloody worse.


Mad Twin said...

Two major problems with our system I think. One is the fact that we in the West do not have a culture particularly of respect your elders. This has got worse in recent years I think because the media are so obsessed with youth and celebrity for nothing. The second is that local authorities are simply not given enough money for services providing social care. It is the poor relation to the NHS and yet always carries the can for the failure of the services. I have worked with many colleagues who are caring individuals and do their best to make the most of what is there, but in the end they usually have to be utilitarian about it. They have a high turnover of people requiring services, the majority of whom won't need them for more than 5 years. So they go for the pragmatic, one size fits all, because realistically this is what is affordable.

It's not all about money, the worst places can be transformed by the right person who is able to see the individual they are providing support for. But we have an aging population and a succession of governments who are unwilling to tackle the problem. At present local authorities all over the country are being squeezed to the nth degree. Central government won't give them more money and won't allow them to raise council tax. As a result most are tightening their eligibility criteria even further - which means services are available only when people are absolutely desperate.

So here's my solution:

The Chancellor of the Exchequer to agree financial increases for social care in keeping with explosion of need (aging population, increasing number of people with disabilities etc)and ring fencing them so they don't get eaten up by local highways departments.

We as local communities should be concerned about the older folk in our midst and find ways to make them and their skills and strengths visible. After all,it will happen to us all one day.

We should stop buying into the crass celebrity culture of our age (anyone want to ban Heat & all those other silly mags?)

Be aware of the options open to us and our families. There are some creative schemes out there that would give older people more control eg
Househaring schemes where the older person has a younger person living with them in exchange for some support.
Retirement communities, where a number of older people live together in flats, where they are in control
Direct payments where you can get funding to buy your own package of care that suits you.

It's not all bleak and grim out there but we do have a long way to go. But if we want a better future for our parents and indeed ourselves, we need to get these things we should be lobbying our local MPs etc to make it happen.

Rage rage against the dying of the light indeed.

Mad Twin

Jane Henry said...

MT. Not sure if getting rid of Heat would change anything per se, though I do agree that the cult of youth does nothing to help us revere our elderly. Mind you, I think Dr Who helps - Sally Sparrow lost her best friend and potential lover in a few minutes on Saturday and revered the memory of their old age... I think that's a pretty good role model for kids...

I agree it isn't all about money and I understand the pressures that people find themselves under, but... the attitude of that care worker is very similar to one that a friend told me about in a care home she worked in. The care workers washed the elderly as quickly as possible so they could sit with their feet up for the end of the shift, without thinking (as my friend did) these are PEOPLE... they deserve our respect and care. It is the same priority which says everyone in hospital has to be woken at 6am... WHY???? To fit in with the system. It's that sort of thing that makes me really rage, and we saw alot of it in Germany, but also far too much of it in the home fil was in. And he was only there two weeks.

I don't have any answers, just a sense of frustration that it isn't better. It should be in a civilised society.

Zinnia Cyclamen said...

I agree with mad twin that there are systemic problems, but I'm not sure it's altogether as bad as you make out. I often visit families to plan the funerals of people who have ended their lives in nursing homes, and mostly the families are full of praise for the support and care their loved one received. Many people have told me how elderly family members' health improved and their independence increased with full-time professional care and proper equipment with space to use it. Usually families have done everything they could to care for the person at home, but there are points at which this can become too much - e.g. if the person becomes unable to walk and has to be lifted on and off a commode by an elderly spouse; if they are so demented that they endanger themselves or others; if they are doubly incontinent... Staff from nursing homes often attend the funerals I conduct, and are evidently mourning the dead person they cared for. And I have visited people in nursing homes who were planning their own funerals, and heard them tell me how safe they feel there, and how glad they are that their family no longer have the burden of care. I'm not trying to say it's all rosy in the garden, but it's not all terrible either.

Mad Twin said...

That's an interesting observation Zinnia. I think I see it from the other way. I work for a local authority (in services for people with learning disabilities). It is is just an observation over the years that older people's services seem to suffer from a lack of resources to do things better. I know of course that there are always goodhearted people who see the person for who they are and do the difficult jobs whilst paid a pittance. And I am glad to hear there are so many of them!

Jane Henry said...

Zinnia, I'm glad if it is better out there then my perception. We didn't have a very happy experience as a family dealing with fil's old age, and I met many people who I wanted to deck for being patronising and uncaring, but we are blessed with a fabulous GP who was amazing and the district nurse who came out the day he died was also immensely kind.

I appreciate there are all sorts of reasons why families have to choose a home as an option, and not all are bad. I think the difficulty (which really does manifest itself in the place mil's sister is) is keeping people vital and interested in the world, and that is what makes you weep, when people are just vegetating out their days.

granny p said...

Have read all this with more than interest - am, after all much nearer the cut than the rest of you. I think about it a lot. Part of the problem is that people aren't allowed to die any more. My old dad lived in his own home alongside my brother till he was 93, but them had a bad bout of pneumonia from which they resuscitated him more or less. He spent two more months at home, doubly incontinent among other things and it clearly wasn't on. He went into a home - the nicest of nicest middle-class and expensive homes (he was on civil service pension; very generous, those)- and spent 3 years there, ever more miserable, longing to die. He had pneumonia several times more, each time they gave him anti-biotics. For his final bout my brother refused to let them give him any and was treated as a murderer, more or less. So he died, at last. Had he been allowed to die first time round he'd have died more or less happy, having lived pretty independently in his own home all his life. Thanks to the bloody LIFE people, we're kept alive now whether we like it or not, miserably cluttering up geriatric wards, homes etc. Doctors know all this but are terrified of murder charges following what they've always done, for merciful reasons. I could tell much worse stories than my dad's being of that age; but I won't. Have made a living will myself, but can't rely on them to honour it, thanks to LIFE. What life? Let us die - by our own hands if necessary. I don't want to live any time beyond independence. No way.

Jane Henry said...

Granny P. Am so with you on the people not being allowed to die anymore. We have a retired GP on my husband's side of the family and he says the same about letting people go. When my father died they resucitated him twice in A&E, until my mum said no more. What would he have been like had they got him back (after a massive heart attack) - not in any shape he'd have wanted to be in that's for sure.

Going with peace and dignity is what we should all be allowed to do.

PI said...

Hi Jane! Here via Zinnia. I'm even older than Granny P and I don't know what the answer is. I am lucky and still enjoy life, but the fact is we now live too long. Quality of life is so much more important than quantity.
I think people forget sometimes that, unless you are cut down in your prime, age happens to us all; so let's give ageism a kick in the b------s.

Saoirse Redgrave said...

Hi all. I came through via Zinnia's blog. I've seen this from several perspectives and will try (stress that ;-) to keep this brief.

I volunteered in a nursing home as a teen (my mother was Activities Coordinator). It was frequent that people were essentially abandoned by family there. The volunteers and staff did what we could, but there were many more people needing love and attention than there were people giving it. It was an issue of family and the almighty dollar controlling staff numbers.

My grandmother died in a home in NC. It didn't strike us as the absolute best (as a family of teachers and military, affording the best isn't possible)but it was better than many (elder abuse in homes being a frightening issue here). She simply could not live in her own home any more (kept dropping cigarettes on the rug) and so she went to the best home closest to the family member who had "Power of Attorney."

My aunt lives in a Mennonite-run home in VA. It is the nicest, cleanest and least expensive home I have yet to see. She has her own apartment/flat--nicely equipped. Visitors come often and there are numerous activities--though she pointed out some seem dangerous (bee-keeping demonstrataions and tap-dancing lessons). There are also issues with who has access to room keys.

A great aunt lives well beyond most people's means in a home I wouldn't mind living in, frankly. But there are theft issues.

Grandmother in law lives in a Masonic home(so not just "anyone" can be admitted). Clean, well-managed, but very small for the price. Good security, though.

My Mother recently lost the battle with cancer. She died in our family home while I sat beside her. It was horrendous for us, but better for her (mostly). We administered the drugs (once the doctor remembered she needed pain meds--a trip back to the ER was required) and called the hospice nurse to do time of death, and Mom got to be around us in the house she helped build until she essentially lost consciousness. She had a "do not rescuscitate" order drawn up which my father kept with him "just in case."

The end of life (as any of life's stages) can't be "one size fits all." There needs to be a societal shift in the way we view our elders and we can't JUST blame the media (of course).

We all need to get involved. Encourage kids to do "service learning projects" through homes, volunteer there ourselves, demystify aging and death, listen to our elders with respect so we model the behavior we hope the next generation will have when dealing with us eventually.

Eh, I've rambled on long enough.

Take care!

belle said...

I came via Zinnia's blog ....
I keep thinking of my parents. My mother is 84 and my father 87.

He has early stage dementia caused by two strokes about 7 years ago. These strokes did something to the short-term memory brain cells which means they are gradually dying off.

She is sprightly and all-get-out - no flies on her at all. However, she is not naturally a carer and fidns it so hard to not be frustrated by finding the teapot in the linen cupboard - again. She filters mail and phone calls to make sure nothing untoward can happen but finds it hard to support my dad in the constant mind games that he needs to play to use his memory.

Now he has been successful in getting into a day centre one day a week which my sister and I hope will help with memory games. Too early to say, though.

We are all worried about what happens if my mum goes first - not likely at this stage but who knows. My dad will need constant watching and both my sister and I are full time workers.

My sister lives next door to my parents but I live 3 hours' drive away. I woudl be happy to retire and look after him but that would mean a move for him which would be most unsettling. Reading this over, the solution would be that I move up to them but that isn't what my partner will want to do - lack of work opportunities etc.

We just want to reassure my mum that he will be OK and I think just showing that we are thinking of it is enough for her.

But, you know, whatever we do will not be right, will it