Saturday, November 17, 2012


Frieda Allenstein is ninety-six years old next Thursday, but she’s the only one here who doesn’t know it. Frieda has dementia. She’s being cared for in her own flat by a combination of live-in carers and her family who live nearby. It’s a loving remedy for a cruel disease that in the last few years has robbed Frieda of her independence, her orientation in the world, her identity.  She is curled up on her side on the bed, her head cradled in the crook of her arm, staring at the sunlight pouring in through the window.
‘Listen to them talking,’ she mutters. ‘Lies. All lies.’
When I lean over to look at her, her eyes are glittering and hard.
The EMI outreach team have changed Frieda’s meds and that’s perhaps one reason why she’s shown a decline this last week. She’s fallen a couple of times – non-injury, but her confidence is shaken and she’s withdrawn to bed. She’s refusing to take any of her pills, and becoming increasingly aggressive to Marta, the live-in carer.
‘I can do nothing,’ she says, standing in the doorway as we gently coax some observations from Frieda. ‘First she is with the biting and now with the slaps.’
Frieda’s son-in-law, Jacob, a rounded and friendly man in his late sixties, sits on an Ottoman with his hands placed either side, as if he were ready at a moment’s notice to spring up and be helpful.
‘My wife’s away on business till Monday,’ he says. ‘What do I tell her? Should we get her back early?’
‘Let’s have a talk first about the options. I don’t think we need to be rushing off to hospital. I think there’s a good chance we can manage this at home with a little extra help.’
I make a couple of phone calls, wait for a ring back.
Jacob makes us tea, and we drink it next door in Frieda’s living room, a bright and lovely room crowded with paintings and photos and the collected ephemera of her life.
‘She’s accomplished so much,’ he says, cradling his cup. ‘So much. It’s tragic she should suffer this thing, but then I suppose she’s had ninety odd years of good health. It’s only in the last couple she’s gone downhill, so that’s a blessing.’
‘It is.’
‘You know – my son jokes with me. He says “Dad, when you start to go like that, let’s take you to Switzerland.” So I say “What do you mean, Switzerland? You want I should go to that dreadful clinic and be finished off?”  And you know what he says? He says: “You know it’s for the best, Pops. Everybody wins. You get to avoid all this mess, and we get to eat Toblerone on the flight back.”’


Sabine said...

Sensible argument. To a point.

Spence Kennedy said...

Hi Sabine

I think there's definitely a case to be made. Shame you have to travel all that way, though.

Jacob's son made it sound as if Dignitas gave away free bars of Toblerone with each .. erm ... booking. I haven't seen any brochures, so I can't say whether it's true or not. :/

Becca said...

We cared for my grandpa in exactly the same way. Not always the easiest but definitely, without a shadow of doubt, the best thing for him. I've stayed in a couple of nursing homes and had friends in a few more - I wouldn't send a dog to any of them. It'd be more 'caring' to just put a pillow over their face.

One thing I will note though is that the vast majority of people living with dementia have a perfectly decent quality of life - very different from before they developed it, usually, and not necessarily what they'd have chosen either, but decent nonetheless. I don't think my grandpa would, if suddenly able to communicate it in the last months of his life, have wanted to opt out of those extra few months surrounded by 3 generations of much-loved family, adoring dog, vast quantities of delicious food.. I think people don't always understand what quality of life actually means, they mix it up with functional abilities or with personal values about work and things. It worries me that people make decisions based on that, not on an honest appraisal of the person's lived experience.

Spence Kennedy said...

Hi Becca

It's a difficult subject (understatement of the year), ranging from religious belief and an individual's view of their own lives and what makes them worth living, to economics and the changing relationships within families and the community. There are so many variables, the best anyone can hope for is that each person will find the best solution for them, with enough resources made available to allow for that.

In Frieda's case, she's had a couple of years of mild dementia, and the family have been able to cope at home. But it did look as if her health was taking a turn for the worse, and the prognosis was that either the family found the wherewithal (emotional as well as practical) to cope with her at home. It may well be that Frieda has to end her life in some form of care facility - but that needn't be a bad experience. My grandma saw out her last years in a nursing home, and she seemed content, smoking out on the veranda, rambling on about long-extinct family members whilst staring off into the rhododendrons (I can't believe I managed to spell rhododendrons. Twice!)

From my own point of view, I hope that by the time I've reached that point the opportunity would be available to me to kiss my family goodbye, have a G&T, Four Last Songs by Strauss and a slice of cheesecake with a sparkler in it.

Which boils down to having the choice, I suppose.

Thanks for the comment, Becca. Very much appreciated.

Anonymous said...

A very touching story, well told.

But I fear I'm going to lower the tone with an old tale told by MonkeyBoyAlpha.

" evening my dad had been out on the fizzy pop and had got himself a little worse for wear before coming home. Just before bed he's meant to inject himself with 10mg of slow acting insulin. However, being a little merry, he picks up the fast acting insulin (which you are meant to use 2mgs of) and jacks himself up with 10mg of daytime juice.

An hour later my mum gets worried, she can hear a knocking in the bathroom. Assuming it's my dad pottering around in his drunken state she shouts at him to come to bed. No answer, so she gets up to give him a piece of her mind, only to find him sat on the toilet, pyjamas round his ankles thrashing his hand in a bin. She calls him, prods him, waves a hand in front of his eyes but, but to all intents and purposes he's unconcious.

In a panic, my brother is got out of bed, the paramedics are called while my mum and brother try to get some sugar into dad. They don't know where he's put his glucose gel, they're shitting it knowing that he's getting worse by the minute, so grab a banana and mash it up into his mouth, trying to rub it onto his gums so that he'll get some sugar in his system.

The paramedics arrive and test for blood sugar whilst trying to communicate with dad. They cannot find a trace sugar reading, which is bad. Luckily they have the right kit, inject him and slowly he comes round. If they hadn't have turned up dad would have been in a coma most likely with permanent consequences. However, this is not the only lucky escape, as the paramedics said if that happened again, the quickest way to get sugar in his system would be to shove a Mars bar up his arse.

My Dad, horrified at this prospect, says "It's bad enough coming round on the toilet with your pants round your ankles, your mother rubbing banana all over my face and 2 green men staring into my eyes shouting "MonkeyDaddy! MonkeyDaddy!", without having a Mars bar shoved in my fundament"

To which my mum replies, "You do that again and it'll be a bloody Toblerone!"

Anonymous said...

Brilliant, with you mum.

jacksofbuxton said...

Tricky subject Spence.I wouldn't allow my dog to suffer any unnecessary pain,yet humans have to suffer all sorts of painful ends.And yet the spectre of Shipman haunts any discussion of easing people onto the night ferry.

I suppose one way of funding the trip to Dignitas would be to load up on duty free baccy and booze and selling it on to pay for the tickets...

Spence Kennedy said...

Anon - That's a great story! I must admit I've not heard of the Mars bar trick - not in in the context of a hypo, anyway. I wonder if it would actually work? People take other drugs PR, so it shouldn't be surprising. Messy, that's all. All that toffee. Maybe a Flake would be better.

Jacks - Shipman is responsible for such a lot of misery - not just the people he murdered, but the destruction of the trustful relationship between family GPs and their patients that meant there was more flexibility around end of life care.

It's outrageous that people are faced with a trip to Switzerland to get the care they need. The expense, the hassle, all at a time when you need to be quietly at home with your family. Maybe they'll sort it out, but so far it doesn't look hopeful.


Cheers for the comments!

Elizabeth McClung said...

Becca: thank you, thank you, thank you.

Spence: The kiss and goodbye is oft quoted and infrequently followed. There is no clear time, and the sticky part of dying is overwhelming - plus, the more that is taken away, the clearer the joy of being is. I thought of all, you would have an idea of how one lives long and dies while sleeping while another degenerates from (pick one..). Perhaps, like a friend, you would know what you have, but not see a doctor, deliberately sidestepping five years into one. Strangely, disease never comes when convienant.

Spence Kennedy said...

Hi Elizabeth

I absolutely agree about the 'kiss and goodbye' thing, but I think it's infrequently followed because it's not readily available.

I have attended a wide variety of end-of-life scenarios. What I take from them - along with a respect for the incredible tenacity of the human spirit, and the inspirational power of love - is that good quality palliative care & pain relief is vital, along with the continued ability to exercise choice and self-determination.

For me, being able to choose the time and method of my death would be a reassuring adjunct to all the other systems of support. I think with the proper safeguards in place it could work.

At the moment, something like 18 UK people go to Dignitas every year. I think it's a shame they can't die at home in their own country, in the presence of their family and friends, surrounded by their personal things. It would be so much more comfortable.

As I say, a difficult subject. From my point of view, all I can do is continue to write about the situations I come across, and see how other people deal with it.

Thanks for the comment, Elizabeth. Very much appreciated.

Elizabeth McClung said...

I totally agree with you about the importance of good palliative care and pain control. Where I am the province is currently sueing the Supreme court decision which granted integrated Euthenasia. It is rather frustrating.

I do appreciate your dedication to the story found in the every day, albiet a view with more chaos than most. Thanks to your nod to, I found your work there - will recommend. Do you sell paper at all. Paper is good.

As a person on 3 patches of Fentynal every 48, the ability to sleep without cracking teeth from clenching, and thinking clearly again helps in deciding the right time to go. Again, would recommend Dancing with Mr. D - a year in a Palliative Hospital.

Thank you for your reply.

Spence Kennedy said...

Hi Elizabeth

It is a chaotic view! Half the time I feel as if I don't have the time to fully appreciate or understand quite what it is that's happened. Writing helps consolidate and fix the experience, but for the most part I'm floundering around in a sea of complication and poorly understood consequences. The default position in the ambulance is to emphasise the practical, of course. Pick someone up, take them to hospital (or not). Clean them up, make a cup of tea, chat about this and that. It's endless, really. I do think it skews my view of the world - certainly the town I work in!

'Dancing with Mr D. - a year in a Palliative Hospital' - I can only find a reference to a puppet show exploring some of the issues in palliative care. Is that what you meant? Or is it actually a book I could get? (And then there's the Rolling Stones track...)

Thanks Elizabeth. x

Carla Humphreys said...

Hi spence, as you know I work in dementia care, but some are palliative. We had a lady who was riddled with cancer. The gp had written a request for the dn`s to come out to give her a stickiness drug just before her morphine was administered. They said, "we will come out this one night but then we will have to refer back to the gp!!! When i was told a out this I was not happy. The poor woman had about 48 hrs and the lazy arsed dn`s couldn't be arsed to come out every 4hrs.(rant over)
So no wonder ppl go to Switzerland, at least it's dignified.
Just makes me so bloody mad that ppl can't die with dignity sometimes.

Spence Kennedy said...

It's messy - still!
I despair.
The message here is - take care of business whilst you can! We've got years to catch up - I don't know if we ever will.
Of course, the difficulty is in taking action whilst you still have capacity, because whilst that's true, tomorrow mightn't be too bad...
You have to look ahead - and who amongst us has the courage? Or the knowledge / support?
The alternative is to rely on the professionals, who are all hidebound by risk & culpability.
You must come across this so much. I have the utmost respect!