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1st post.Torn over travel plans. - Page 3 - Carers UK Forum

1st post.Torn over travel plans.

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jenny lucas wrote:
Thu Aug 23, 2018 11:07 am
. . .
I still feel the real 'pig' about caring for elders is that we just do not know how long they will live!

Had I had a guaranteed note from God saying 'She won't see another Christmas after this one', I'd have taken a breath, put my own life on hold for a year, and devoted myself to making her final year of life just the way she wanted, living with me and me looking after her all the time. But, five years on, she is still physically 'alive' even if frail, and could easily last another few years.
Jenny, I can identify so well with those words. It is really very difficult to predict how long someone will live. Five years ago my mother was diagnosed with dementia and is now in a care home. To be frank, given that dementia is progressive and life-limiting, I am sometimes slightly surprised that she is still with us; we did not expect her to last this long.

She is now 98. People sometimes say to me, "Do you think she will make it to 100?" I reply that we don't think in those terms; we take things a step at a time. We silently treat each Christmas and birthday as if it were her last.

I expect that if she makes it to a few months before her 100th we'll start to make suitable arrangements to mark the occasion. We don't want to do this too soon, and risk being disappointed.
The trouble is, once they are in a care home they ARE physically well looked after, so their chances of dying are actually reduced.

Does your mum have a DNR on her, and does tis extend to not offering antibiotics against infection as well as heart failure?

My own, highly personal, opinion is that it is simply cruel to want to extend their lives at this stage. If I could post a photo of my poor MIL at her recent birthday, it would be hard to disagree. It is a pitiable, pitiable state that she is in....no one who cared about her could want her life dragged out any longer. She herself would be horrified if she could see herself now. Wouldn't any of us feel that horrified if we get to that state? We would not want to inflict it on ourselves, or our family.
Hi Jenny

Yes she does have a DNR in place.

The last few days, she has become totally obsessed with her bowels, using her fingers and hands to "get it out". It is disgusting and the staff are finding faeces all over the bathroom and bedroom where she has not washed her hands properly after one of her "extraction" sessions. I've implored the doctor to get her to stop and make some other recommendations to help. The staff tell me that she isn't even constipated, but she has it firmly in her mind that she is.

I agree with you and Denis that it is a pitiful sight - not just seeing my Mum like this, but actually an entire home full of old people like this; in the most part they are literally sitting around waiting to die. They do not appear to think that a weekly sing song, or doing a crossword puzzle, or seeing their family once a week is sufficient reason to hang around in such pain/discomfort and indignity. Life was never meant to be like this. We have taken so much pride in our society at our ability to extend life, but my goodness me, just look at what cost. I have yet to meet a single elderly person who wants to be alive!! In what world are we calling our intervention a success?! If Dignitas was next door to my Mum's care home, I can tell you now, she would already have shuffled off round there and ended it all - her choice. Despite being a catholic (lapsed!), she has always been a strong supporter of euthenasia. But I guess we need to be careful on this forum speaking of such things, as I do understand it may be offensive to some people.

As I understand it, the demographics of the near future are absolutely frightening. There are already over half a milion people over 90years old in the UK and this figure is set to rise dramatically over the next 30 years or so. How on earth are we going to ensure these poor people are properly cared for? The system can't cope now!

This whole experience with my Mum really has madae me stop and think about the bigger picture and what is coming down the line. It makes me shudder.
I don't think 'offensive' is quite the right word - maybe 'insensitive' (and yes, of course, there are the dark, dark undertones of 'cleansing the population of its useless members' etc etc.....)(which is quite quite different from people WANTING to end their own lives on an entirely rational basis that they have zilch quality of life!)

In a way, one might equally say it's offensive' to force people to live to the bitter end and be reduced, as your poor mum, is, to handling their own faeces....

To me, the real vicious 'Catch 22' of dementia is that by the time it 'reduces' us to anything like that level we have LOST legal capacity (at the very least of it) and therefore CANNOT take a 'rational decision'. Unless we put in place some kind of advance directive that says, when my dementia gets to this point, take me out and shoot me (I tend to prefer the term 'time for my Sleepy Cocoa'....), how can anyone possibly take a life or death decision about them, other than to err on the side of 'life' (or what is left to them of it).

And then, of course, we have the VERY thorny issue of 'self-ending' or 'someone else doing it' - a HUGE moral difference. Do I have the moral right to ASK someone to 'take me out and shoot me' and then they have that in their memory all their lives? 'Mercy killing' has a toll.

In the 'good old days' so we are routinely told, the visiting GP would simply quietly slip an extra dose of morphine into the painkiller, 'to ease the end', and no one said anything, let alone actually admitted it was going on. Impossible these days (for better or wors - and it could be 'better' that it's impossible now - think Harold Shipman....)

Overall, although I agree the demographics are scary, remember this is just the post war 'bulge' working its way through the demographic pipeline. Once my generation is pushing up daisies, the next one coming along will be much smaller.

And, really, there is nothing wrong with old age per se. It's INFIRM old age that is the problem! A relative of mine's mum is 95, and fit as a fiddle apart from a bit stiff in walking. Her brain is 100% there, and she is a delightful lady to converse with!

Yet my MIL was like that until she hit 89, and then the decline into dementia was rapid and merciless....

Physical infirmity is far more 'soluble' to my mind, as it is a question of simply 'keeping fit' - but with the epidemic of obesity sweeping across us (courtesy of the utterly unregulated 'sugar pushers' - the food industry) that isn't going to happen. In a way, the obese folk will 'self-regulate', just like the drinkers and smokers - they will simply die younger and remove themselves from the population. Darwin in action alas.....

All that said, it is, yes, a daunting problem, the sheer amount of CARE that a physically and mentally infirm person needs.

The economics are nightmarish, as not only is the carer (whether family or professional) get removed from the 'productive' economy (and is therefore a net drain on those who DO produce the surplus in the national economy - ie, carers are a 'net cost' economically), but they also represent a huge 'opportunity cost' themselves. Think of all the 'productive' work a carer could do if they weren't keeping those with advanced dementia alive.....

NO easy answers. And certainly no CHEAP easy answers.....
I’m really hoping you’ve been away or got it booked. I totally relate to everything you’ve said and I’ve finally found the steel to go away longhaul over Christmas (which I cannot stand!). I’ve prepped mum and grandad for months - he’s off to my aunts (the one thing she does do each year) as far as I know mum still planning to stay home alone ( but there’s 3 friends in the village icoe). I’m not feeling guilty about it but I’m natch not allowed/encouraged to get excited about it or talk to mum about it - tends to set off the “im alone and nobody cares - except you” type commentary. I’m still going though and I’m ignoring all the negative stuff. We sooooo need time away so if you haven’t done it yet please do it asap xxx
Leonie_1811 wrote:
Fri Nov 09, 2018 2:36 pm
I’m really hoping you’ve been away or got it booked. I totally relate to everything you’ve said and I’ve finally found the steel to go away longhaul over Christmas (which I cannot stand!). I’ve prepped mum and grandad for months - he’s off to my aunts (the one thing she does do each year) as far as I know mum still planning to stay home alone ( but there’s 3 friends in the village icoe). I’m not feeling guilty about it but I’m natch not allowed/encouraged to get excited about it or talk to mum about it - tends to set off the “im alone and nobody cares - except you” type commentary. I’m still going though and I’m ignoring all the negative stuff. We sooooo need time away so if you haven’t done it yet please do it asap xxx
Sounds brilliant Leonie. Stick to your guns and ignore the negativity
Yes indeed! Don't let it spoil your vital break.