Alzhiemers and future generations

[Jaded'n'faded]

We're all going to die and most of us have some fears about it so it makes sense to do all you can to put plans in place, in order to retain some control of what happens to us.

We've always talked openly about such things in our family, often with a lot of black humour. Shortly after my father died 20 years ago, mum 'put her affairs in order' and made a new will, sorted EPA (as it was back then) and made her Living Will. She talked proudly about her plans just about every time I saw her after that - it all became a bit tiresome as she would endlessly tell me, 'You'll be well off when I pop my clogs.' She also kept a load of dad's old pills and told me she planned to 'take the lot' should she reach the stage of needing someone to wipe her bottom - that was always her line in the sand.

Of course, it never works like that. I suppose she vaguely imagined having a heart attack/stroke or terminal cancer and thought she would have the wherewithal to determine one day that her life was no longer worth living and would then take the pills. In reality, although her health is excellent, no one foresaw dementia or made any plans for what to do if it happened.

However, those of us who have experienced dementia through caring know darn well what is involved, hence all our worries. Hopefully, having this knowledge will help us in preparing our future plans and some of the worry can be avoided (or at least reduced.)

@Lawson58 I can hear your relief that you have now done this

 

[Lawson58]

We're all going to die and most of us have some fears about it so it makes sense to do all you can to put plans in place, in order to retain some control of what happens to us.

We've always talked openly about such things in our family, often with a lot of black humour. Shortly after my father died 20 years ago, mum 'put her affairs in order' and made a new will, sorted EPA (as it was back then) and made her Living Will. She talked proudly about her plans just about every time I saw her after that - it all became a bit tiresome as she would endlessly tell me, 'You'll be well off when I pop my clogs.' She also kept a load of dad's old pills and told me she planned to 'take the lot' should she reach the stage of needing someone to wipe her bottom - that was always her line in the sand.

Of course, it never works like that. I suppose she vaguely imagined having a heart attack/stroke or terminal cancer and thought she would have the wherewithal to determine one day that her life was no longer worth living and would then take the pills. In reality, although her health is excellent, no one foresaw dementia or made any plans for what to do if it happened.

However, those of us who have experienced dementia through caring know darn well what is involved, hence all our worries. Hopefully, having this knowledge will help us in preparing our future plans and some of the worry can be avoided (or at least reduced.)

@Lawson58 I can hear your relief that you have now done this

Most of my friends are in my age group and we talk about dying quite often but always thumbing our nose at it. We have survived long enough now not to fear it.

The part I found hardest to deal with when doing the Advanced Care Directive was dealing with what might happen if I was in the early stages of dementia and had a life threatening episode. My husband was diagnosed about five years ago and he has had a remarkably happy time compared to most of the others on TP so my experiences were different but I knew what many others endure with AD.

Finally I considered my age of 75 years, my family history (no known AD though my grandmother was quite eccentric) and my life expectancy. And dementia impacts families like nothing else I know so all that had to be considered. Then there was the question of what 'early' dementia really meant and who could or would decide what that was.

Honestly, I felt it was a gift to my children and one that only I could give them.

 

[gardengirl]

None of us know what is around the corner, my advice, enjoy each moment, your friends, family, new experiences are waiting for you to discover! Be positive, not contemplating on what may or may not be! Good times are ahead, go and find them - only look forward not back!x

 

[Fearnodarkness]

Might add, much as I dread dementia, what I dread even more is our daughters having to look after either me or my husband. Having seen and lived with so much dementia, both FiL and my mother, it's the last thing we would want for them.

Hence we have both added to our Health and Welfare powers of attorney, that in the case of dementia, or any other condition where we are unable both to a) care for ourselves, and b) speak (with full mential capacity) for ourselves, they have strict instructions to find us a reasonably nice care home - they already know never to bother with the most expensive, 'Stylish Homes and Gardens' type - cosy and homely will do fine, thanks.

When I was relatively new to it all, and looking at care homes for my FiL, I remember wondering why on earth the chairs were mostly round the sides of the room. However several years (and another relative with dementia later) I came to think it was purely practical. Fewer obstacles for people who may often need walking frames or wheelchairs, easier to clean - and a lot of cleaning is often necessary with dementia - without having to move both chairs and residents, who may not be very mobile at all. and in any case (especially in later stages) would not want to be disturbed.
My mother's CH was purpose built for dementia - very well designed IMO, and had this arrangement, but was nevertheless bright, cheerful and homely.

I went through that, but Mum was moved through three homes of slightly different kinds fairly quickly, and we learned fast that they are all arranged in the same way, no matter how nice the lobby or the wallpaper is. I dread other people asking ... "but why? ..." Why don't people talk to each other more? (Because they can't remember anything more than a few seconds and soon find themselves at cross purposes) Why aren't they in groups? (See Witzend's previous.) Why is Mum with people many of who are so impaired? (Because she has aggressive Alzheimers and can no longer manage her relationships ... she and others like her have to be watched all the time ... left to herself, she bullies people ... faced with a visitor, she's charming, and the visitor gets no inkling of the real situation.) And so on. I realise now that nobody knows these situations unless they have dealt with them over time.

I would not want any individual to have to look after me, past a certain stage - not even my DH. I would look after him unless he became aggressive (he's the person in the world least likely to, but I have seen how this disease can bring out extreme emotional reactions in people), and then try and find a Home nearby where I could see him regularly. But just finding and maintaining a relationship with a good home, and all the admin and the financing going on around it, is harrowing. We don't have kids, so I don't have to worry about them ...

Like a few people on this thread and elsewhere, I find myself sizing up ... would I fight cancer if it came back? How hard do I work to avoid heart disease, when Dementia could be the alternative. And so on.

 

[Witzend]

I too am in favour of assisted dying and with the numbers of 'old people' increasing globally every year, there is bound to be further discussion - and hopefully, changes in the law - in the future.

But there's always going to a problem with dementia sufferers (unless an Advance Directive is in place) because of loss of mental capacity. The main opposition to assisted dying seems to be a fear that old people will be coerced into signing something or made to feel they are a burden. Reading posts on TP about the appalling actions of certain relatives and scammers to appropriate the funds of PWD, this fear is not unjustified. So any change in the current laws on assisted dying may insist on the person concerned having full mental capacity, in which case we'd be no further forward.

I really think that for those of us who fear 'the worst' happening, the best we can do is to make sure we get that Advance Directive in place. Even if we can't ask for assisted dying at this point, it may be an option in the future and I will make provision for this when I do mine (if I can!)

But I'll say this: my mum has a Living Will (the old AD) but has no capacity, which means it is down to me, the evil daughter, to wave it at people and insist they follow it. It's a very hard thing to say to a medical professional, 'I don't want you to treat my mother'. Some are fine and completely understand, others have looked at me as though I am a murderer.

I don't know about anybody else, but after countless hours spent in care homes over the years, I can't help thinking that too many people with dementia are kept alive for no real reason other than that it's now possible to do so. Stuffed with pills for this and that, to keep them 'healthy' - for what?? Badgered and pestered to eat and drink when they no longer want to, in and out of hospital, on drips, to keep them going that bit longer, when their quality of life is so poor.

My own mother's physical health was always robust, which was why she went on so long with advanced dementia. However I had no trouble getting care home staff to agree that except for anything like another broken hip, anything but palliative care would frankly be verging on cruelty. As for badgering her to eat and drink if she stopped wanting to, there was no way I was going to allow it.

An elderly aunt of mine, late 80s with fairly advanced dementia and a history of recurrent UTIs, started to refuse food and drink after the umpteenth UTI. She had no children, and at the time I was the only relative the care home could contact. I was asked whether I wanted her taken to hospital and put on a drip, or (basically) left where she was, with palliative care, to die.
It was a horrible decision to have to take. I could only ask the lovely GP what he'd do if it were his much-loved aunt.
He said that given her history it was only going to happen again, probably quite soon, so hospital would just be putting off the inevitable - he'd leave her in peace, in familiar surroundings, where they'd keep her comfortable.

I sat with her a lot during her last days. She was asleep virtually all the time. Staff continued to offer food and drink, but she would invariably close her mouth and turn her head away. She drifted away quite peacefully after about a week.
Although it was so difficult at the time, I never regretted the decision later - I'm quite sure it was whatnshed have want d for herself.

So I don't think it's necessarily difficult to ask medics about treatment vs. palliative care, but I think some people are nervous of bringing it up, and think the medics must always know best. OTOH I think medics may well be wary of suggesting that palliative care would be kinder than active treatment, since some people do get very upset/ indignant if absolutely everything possible is not done to keep someone going, no matter how pitiful the state they're in.

 

[Lawson58]

@Lawson58 i was taken aback at the news your state in Australia is to introduce assisted dying. That hasn't been reported here as far as I know. We have had a few attempts to change the laws in UK and in Scottish Parliament but to no avail.

It will happen some day but not yet it seems. I must look online for the discussions on the subject in Oz.

Hi Marion,

Just an update. June 17th is the date that Assisted Dying becomes legal in our state so not too far off.

We are in the middle of a federal election at the moment and our ABC has been running a multi-faceted survey about all sorts of things including this particular subject. Over 1,000,000 people have completed the survey and 97% are in favour of medically assisted dying. Definitely time for things to change nationally, not just in our state I think.

 

[marionq]

@Lawson58 this is a subject which never gets past the starting gate here as there are so many against the idea. It really must be discussed openly and solutions found to those issues which present as problems. I look forward to hearing how it all works out in your state.

 

[Lawson58]

@Lawson58 this is a subject which never gets past the starting gate here as there are so many against the idea. It really must be discussed openly and solutions found to those issues which present as problems. I look forward to hearing how it all works out in your state.

If this is handled sensitively after it becomes law, then we probably won't hear much about it at all.
In the survey, many of those for it were Roman Catholics which was a surprise.

The main cancer hospital in Melbourne is preparing for it and because they already use counselling and allied services I think they should handle it well. But it will be interesting to watch to see how things go.

 

[father ted]

As you get older you can’t help but think about what the future holds for us and those closest to us but probably best left as a complete mystery.

In my Mum’s home all the residents have dementia to varying degrees but they all still have moments of joy even if they don’t speak. A big smile when a relative visits or an extended hand when someone speaks to them kindly. Also incidentally the lounge is big enough to accommodate armchairs in small clusters which always looks more cosy and conducive to conversation.
I try not to waste the life I have now by projecting into the future about what might be. Only 2 certainties- death and taxes.