Sunday 20 June 2010

The truth that lies beyond the Secret Garden

My big sister Val posted this picture on Facebook today. It is a picture of my mothers garden taken in March 2008, five months before she passed away. I love this picture, it is full of secrets and mystery. Such a vivid array of wild flowers and colours. The little bird bath with a fat pigeon drinking. As my mums health deteriorated, she'd spend hours staring at the garden, wathcing the birds drink, the squirrels eat the peanuts left for the birds. Occasionally a fox would saunter through, or even a vixen with its cubs. After my mothers stroke in 2001, I would religiously visit her every night and share a couple of cans of Guinness. Her stroke affected her speech, she suffered from a condition known as "Jargon Dysphasia". This robbed her of her legendry eloquence. She became a bit of a recluse, as she couldn't bear the way people treated her like an idiot. The brain was still there, fully functioning, but she couldn't get out what she wanted. The most difficult time was when she became involved in a  protracted court battle with her former solicitor. He claimed that she was, shall we say, not with it and as such her testamony couldn't be trusted. Whilst it was clear to anyone that she was completely right, she had to prove that she'd not instructed him to do something stupid. His defence was that she had and now her family were "manipulating" her. She was livid, but she just couldn't express herself. Her solictor took a statement, the other side challenged her "fitness of mind". We were told by the court that we needed medical proof that she was "of sound mind". Her GP (who I believe knew perfectly well that she was completely sound of mind) bottled it and claimed that a more expert opinion was needed. Eventually she ended up with a top psychologist for a one hour interview on her own. His verdict. She had jargon dysphasia and was completely sound of mind and extremely pissed off with the whole thing. The court eventually saw things her way, sadly it the costs were nearly half of the compensation for her losses. The "other side" had a strategy of dragging it out till she died. She had a strategy of not dying until she won. There really was no contest whatsoever.

When I was standing as a councillor in May I knocked on the door of an old lady in Mill Hill. She looked just like my mother had, the last time I saw her. Frail, unable to communicate, sad. She saw I was a Lib Dem and smiled and gave me a thumbs up. I just wished I'd stopped, made a cup of tea, had a chat, but as I didn't even know her, I couldn't exactly ask myself in and do that.

When I used to visit my mother and share a Guinness, she'd relax. She'd talk. We'd discuss all manner of things and it seemed like the curse of her speech problems would lift for a while. There was a point in around 2005, when I thought she'd make a complete recovery, but then she broke her hip, she got C-Diff in Finchley memorial, her Oesteo Arthritus got worse, with spinal degeneration and her eyesight started to fail. With this came depression and the loss of the will to live, beyond her desire to win her case. Once this was done, she decided she'd had enough. Her trouble was, she knew I wouldn't let her give up. She waited until I'd gone to San Francisco before she had the massive stroke that killed her. She knew that there was no way I could get back to try and persuade her to get better (at least thats how it felt to me). Strangely, I wasn't too sad. I knew she'd had enough. The only things she really enjoyed in life, once her eyesight meant she couldn't read, was having a Guinness of a summer evening and staring at her secret garden. She told me that she would, under no circumstances, move to a home. She told me that she wanted to die in her own flat, not being bossed around by carers and nurses. It would have been far better and easier and far less stressfull for the family, if she'd just F****d off to a home and simply faded away, out of sight and out of mind. None of the endless phonecalls in the night, none of the endless days off work to take her to the doctor. No feeling of fear every evening as I walked home that she'd have another fall and I'd find her dead. Yes it would have been easier. Having said that I wouldn't have missed a single moment of those evenings when we sat and contemplated the secret garden over a can of Guinness for the world.


Mum contemplates her garden in March 2008

5 comments:

Mrs Angry said...

You have no idea what a blessing it was that your mother was able to end her days at home rather than in one of our local 'nursing homes': in fact, come to think of it I will write a blog about my family's experience of this hellish fate, which horribly illustrates what happens when the private sector takes on the farmed out responsibilities of social care, as we are being told to expect in our easyBarnet borough.

caroline said...

Yes, Mum was really lucky to stay in her own house until the end, but she was fortunate enough to have a large and loving family able to support her, plus a couple of excellent care workers to cover when the family was unable to.

Not all cared for people have this level of support. Imagine the scenario of an elderly couple who either have no children or the children live too far away to be able to help. Or an only son or daughter caring for an aging parent whose needs increase to something approaching 24 hour care. For many if not most carers, the decision for their cared for to enter into residential care is one of the hardest they will face, even when there is no real alternative.

Yes, there patently are poor care homes, but there are also good ones. It's not a question of telling your loved one to f*** off out of your life, it's a matter of arranging for somebody else to provide a level of care that you cannot. This way, a family carer may be able once more to sit down to a can of Guinness with their old mum and enjoy gazing at the garden instead of spending 24 hours a day cleaning, nursing, feeding, risking their own physical and mental health and having no energy left for the few simple pleasures you were lucky enough to be able to take for granted.

In a perfect world the elderly would be part of the extended family and everyone would be involved in making sure they were loved and valued, and stayed at home until they died. The reality is that families are small and geographically spread out. Husbands and wives both have to work full time in order to pay the mortgage so can't drop everything if say Dad gets Alzheimers or Mum becomes bedbound, let alone if it happens to Uncle Joe or Great Aunt Mary. When a couple reach their seventies or eighties the chances are that one or both will have care needs, but if they only have each other who steps in if the carer becomes the cared-for?

Don't assume that anybody in a care home has been abandoned or dumped. It isn't that simple.

Tell a man spending £800 per week paying for his wife to have 24 hour care for dementia that he is behaving wrongly. He has probably spent the last five years looking after the wife he adores who doesnt recognise him.

My guess is that the decision that somebody needs residential care would never be taken lightly. It is up to the relatives of those living in care homes to make sure that only the very highest standard of care is accepted. If you visit a care or nursing home and you see a resident being treated in a way that you yourself would find unacceptable, speak up and complain.

Poor care homes can only exist because nobody knows that they are not doing their job properly. If you have to place somebody you love into residential care do your homework, read reports published by the Care Quality Commission, drop in unannounced at any home you are seriously thinking might be suitable, and make sure you arrive at a mealtime to see what people are being fed. If you wouldn't eat the food, don't expect your cared for to like it.

Mum was able to live her last days as she chose. Not everyone is in that position. You lived within 5 minutes walk of Mum. If you were an only child who lived a couple of hours drive away, wouldn't it have been better for her to be somewhere that she had company, had personal care and you both had peace of mind that if anything happened to her she would get immediate attention? And as for anybody bossing Mum about - do you seriously think they would have dared? :)

valblog said...

In the course of my job I visit infirm elderly men and women in nursing homes. It is a "destination of last resort" for many. They are frequently taken care of by low-paid carers. What always amazes me is the loving care shown by these carers in the face of challenges such as cleaning many incontinent patients & suffering abuse and general disrespect from patients and families. As a society we should remember our primary purpose is to help others. This is the key to lasting happiness and peace on earth and is eschewed by most philosophies and religious faiths. Oh, and another thing, if any business anywhere has a sign up that says "We treat you like family" go somewhere else... I mean it!!!-except for Roger and Laurie Tichborne, they are THE BEST!!!

Mrs Angry said...

Our ninety three year old father had to enter residential care when he developed a form of dementia that could not be cared for at home, at the same time that our mother was also dying - this was the worst possible experience you can imagine for your parents. I will never forgive or forget the those responsible for the terrible, inhumane treatment - I can't call it care - that he and the other dementia sufferers went through at the home he was in. I intned to tell this story in my blog as a warning to others in our situation. Unfortunately, some of the homes run by large companies are really, really bad, but once you discover this, your relatiove is often stuck as there is a chronic shortage of places for dementia sufferers in London and you won't be able to fins anywhere else that will accept your relative. Reading the care home reports is vital, but unfortunately, even when continual reports indicate the same recurring problems and failure to meet statutory requirements, there was no action taken against the home in question: why? Because local authorities rely on these places to fulfil social care contracts and are unwilling to take effective action against them. Dementia patients can't make too much of a fuss, after all - and many of them have no relatives visiting to make sure they are being treated properly, whcih gives bad homes huge scope for neglect and even abuse. The example of what happens in these homes and to these most vulnerable of residents is why the future easyBarnet policy of delegating social care and other services into the private sector is so dangerous.

Broadway Blogger said...

Thank you for sharing that with us. A beautiful story and the garden is fantastic.