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Source: (consider it) Thread: Aging Parents
Squirrel
Shipmate
# 3040

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I'd like to hear from other Shipmates who are dealing with parents who are getting old and frail. In my case it's my 84-year-old widowed father. His mind is still sharp, but it's getting harder and harder for him to maintain his independence. (And forget suggestions of hiring an aide! - he's one of those Suck It In and Tough It Out guys).

Seeing Dad's condition and his frustration over it is very frustrating. How do you cope with such a situation?

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"The moral is to the physical as three is to one."
- Napoleon

"Five to one."
- George S. Patton

Posts: 1014 | From: Gotham City - Brain of the Great Satan | Registered: Jul 2002  |  IP: Logged
Huia
Shipmate
# 3473

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Sorry Squirrel I have no answers - I'm in a similar position myself and I find it both frustrating and painful.

Huia

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Charity gives food from the table, Justice gives a place at the table.

Posts: 10124 | From: Te Wai Pounamu | Registered: Oct 2002  |  IP: Logged
Nicodemia
WYSIWYG
# 4756

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Having been in that position myself in the past, and now approaching rapidly the same situation as I grow older and can't do much, I have complete sympathy with you.

However, can you break it down into what exactly your father finds difficult? Getting up, dressed and around? Getting food for himself? Getting to the bathroom as necessary?

You don't sound as if you live in the UK, so I can't suggest the help we have here. But Occupational therapists have been so much help to me, with aides for specific tasks, I can recommend that route.

Otherwise, can you talk to your father about living in a Home as though it is in the future, not like tomorrow, and get him gently used to the idea?

Posts: 4537 | From: not too far from Manchester, UK | Registered: Jul 2003  |  IP: Logged
Uncle Pete

Loyaute me lie
# 10422

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Speaking as someone young/elderly, but with increasing age-related disabilities to go along with other disabilities I offer the following:

1. An every-two-weeks housekeeper. Mine does the floors, dusting and cleaning, changes sheets and does any other laundry outstanding. She also drinks coffee and while working hard, she maintains a constant chatter with me while I drink my coffee.

2. Food preparation - this is a toughie, as I have long cooked from scratch abhorring sodium and sugar-saturated offerings from the supermarkets. I now do a major cooking twice a week, dedicating a day to the task. Not all at once, but one or two different dishes at a time which I freeze in meal sized portions. Sometimes I just get fed up with the cooking and I may end up doing one thing a day, but the food all gets done shortly after purchase. I shop once a week for fresh food and twice a month for household stuff and tins.

God bless my humble microwave.

3. Bathroom and hygiene I shower every other day*. It has been years since I have had a proper bath. The handy thing about being already disabled means that I have already grab bars and bath seats in place. If he doesn't, get them installed. * and do a sink bath on other days. Except in India, where I shower every day

3(b) Toileting. I learnt years ago that sitting for both functions was the way to go. I find it easier now that I am older to wear sweat pants rather than trousers - they're easier to pull up and put in place than flies, belts and suspenders. Although suspenders have their use, especially if you sit a lot.

Incontinence is a problem - especially urinary incontinence. Especially when I go out, I find that wearing a Depends -like product gives me peace of mind. I seldom wet, but this is in case I do - or cannot use a toilet where I am.

This is perhaps too much information, but it is the perceived hidden shame of aging.

The bottom line to all this is that, as you age, you cannot expect to do everything you used to do, at least not in the way you used to do it. A little inventiveness can prolong independence.

My prayers are with your father.

eta clarification.

[ 30. December 2009, 10:16: Message edited by: PeteC ]

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Even more so than I was before

Posts: 20417 | From: No longer where I was | Registered: Sep 2005  |  IP: Logged
Hiro's Leap

Shipmate
# 12470

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quote:
Originally posted by PeteC:
This is perhaps too much information, but it is the perceived hidden shame of aging.

[Overused]
Courageous, honest and helpful words PeteC.

Posts: 3418 | From: UK, OK | Registered: Mar 2007  |  IP: Logged
Campbellite

Ut unum sint
# 1202

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I don't know about offering advice, but I can certainly offer sympathy and support. My sisters and I are dealing with our 81 year old mother who is sinking further into dementia. We saw the first symptoms about ten years ago. Mom has now achieved what I call Zen Enlightenment. Her memory loss is such that she has no consciousness of the past, no anticipation of the future. There is only the Now.

My youngest sister has placed her and our step-father in an assisted living facility. It's very nice but terribly expensive. As difficult as it is to consider, mom's doctor has said that a heart attack or stroke would not be the worst thing that could happen. [Votive]

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I upped mine. Up yours.
Suffering for Jesus since 1966.
WTFWED?

Posts: 12001 | From: between keyboard and chair | Registered: Aug 2001  |  IP: Logged
Jigsaw
Shipmate
# 11433

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quote:
Originally posted by Hiro's Leap:
quote:
Originally posted by PeteC:
This is perhaps too much information, but it is the perceived hidden shame of aging.

[Overused]
Courageous, honest and helpful words PeteC.



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You are not alone in this.

Posts: 743 | From: Snorbens, UK | Registered: May 2006  |  IP: Logged
Jigsaw
Shipmate
# 11433

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Well, bravely and realistically said, Pete C.
And to Squirrel: yes, I have an elderly mother-in-law who is housebound, dependent on carers, and lives 250 miles away, and I tried to support my late mother in her completely irrational and b-minded wish for independent living.
I think the key is: if the elderly person (assuming they are competent to decide) has made the decision on how they will live out their life, we must accept it, however hard it is for us who watch. It may not be what we would choose in their situation, but it's their choice.
It is hard, though, to watch their frustration at the physical deterioration, as Squirrel has said. So keep the lines of communciation open, and be ready for a sign that they're ready to consider other options. All good wishes

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You are not alone in this.

Posts: 743 | From: Snorbens, UK | Registered: May 2006  |  IP: Logged
Squirrel
Shipmate
# 3040

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Right. They have the privilege of making their own decisions.

--------------------
"The moral is to the physical as three is to one."
- Napoleon

"Five to one."
- George S. Patton

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Janine

The Endless Simmer
# 3337

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2 down, 2 to go, God bless 'em.

Mama passed a few years ago after a 7-year fight with lung tumors at first benign then cancerous. Extreme smoker to the bitter end. Mom-in-law passed a couple years ago after declining health over the past 20 years, culminating in needing help for daily living and a final couple years of constant debilitating pain.

Both had their times at the end where they certainly didn't seem rational at all. But then, also, toward the end, they didn't have 100% say in their own lives -- they needed their kids to care for them and some decisions had to be made with/for them that I'm sure they'd never have agreed with if not driven to it.

Daddy and dad-in-law are left to us. More later on that...

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I'm a Fundagelical Evangimentalist. What are you?
Take Me Home * My Heart * An hour with Rich Mullins *

Posts: 13788 | From: Below the Bible Belt | Registered: Sep 2002  |  IP: Logged
Lamb Chopped
Ship's kebab
# 5528

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quote:
Originally posted by Squirrel:
Right. They have the privilege of making their own decisions.

Well, yes, but...

[Tear]

The hard part is when they make bad decisions, like totally TERRIBLE decisions,* and you're starting to suspect there's a dementia thing going on, but you can't get sufficient proof of it to override the bad decisions--even with the power of attorney etc. they so thoughtfully put in place years ago for just this eventuality. And then when the inevitable consequences come, you have to choose. Do you let them suffer (damn hard to do, esp. when one elderly parent is making bad decisions that affect the OTHER, possibly incompetent, parent)? Or do you drop everything, re-arrange your own life and finances (and those of your family), and rescue them? All the while trying not to bite anyone's head off. And then the cycle repeats itself.

I just don't know.

* bad decisions such as
hiring total strangers off the street to do nursing care, without even a background check;
handing over one's checkbook and bank card to said total strangers;
refusing to let relatives know where various financial assets needed for health care are squirreled away;
insisting on driving without depth perception;
etc. etc. etc.

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

Posts: 19992 | From: off in left field somewhere | Registered: Feb 2004  |  IP: Logged
Jigsaw
Shipmate
# 11433

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quote:
Originally posted by Lamb Chopped:
quote:
Originally posted by Squirrel:
Right. They have the privilege of making their own decisions.

Well, yes, but...

[Tear]

The hard part is when they make bad decisions, like totally TERRIBLE decisions,......* ,

* bad decisions such as
hiring total strangers off the street to do nursing care, without even a background check;
handing over one's checkbook and bank card to said total strangers;
refusing to let relatives know where various financial assets needed for health care are squirreled away;
insisting on driving without depth perception;
etc. etc. etc.

Aye, there's the rub. If it comes to some of these things (particularly if these decisions are made by the supposedly more competent of a pair of elders but could cause harm to the frailer one) I would try and intervene. And I have done. In the UK at least, there are usually people (carers, GP, Trading Standards, Driver and Vehicle Licensing Agency, etc., ) that I have phoned and expressed concern. Because of client confidentiality, I don't get a direct promise of action, and quite right too, but sometimes, just that oblique expression of concern I made has lead to something being done to remedy the situation.
Not a lot you can do, though, about where they give money to cowboys who call offering house repairs, gardening jobs, and so on at a reduced rate and who don't leave receipts or a business address.

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You are not alone in this.

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Lamb Chopped
Ship's kebab
# 5528

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Right. And I remember the elder in question coming home chuffed for having passed his driver's test--AGAIN--at age what, eighty-seven? And half blind.

I'm sorry, but you can't do a proper determination of somebody's competence in any area singlehandedly in only five minutes. (Their incompetence now, that may be immediately apparent.... )

That's where we had trouble, because the various Powers That Be all insisted that if they couldn't spot a problem with him in the five minutes they were willing to take, one must not exist.

[ 01. January 2010, 04:51: Message edited by: Lamb Chopped ]

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

Posts: 19992 | From: off in left field somewhere | Registered: Feb 2004  |  IP: Logged
Beenster
Shipmate
# 242

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Poking my nose in with no advice or help whatsoever, apart from sympathy and solidarity as I have watched my father for the last year go from being a wonderful friend - albeit somewhat frail - to being stuck in a home, doubly incontinent, sometimes he can feed himself, sometimes he knows who I am, sometimes he can hoik himself out of a chair to a frame to shuffle along.

The diagnosis is vascular dementia - brought about my frequent mini-strokes that we probably don't know occur.

I go visit as often as I can and - yes - he lives in the "now" - Campbellite I love the Zen Enlightenment expression.

I have had so much worthless advice from well meaning friends who want to "fix" the issue and they tell me how to structure the visits, but I just want to throttle these friends as how do you converse with someone who has pretty much lost the power of speech and has no memory of anything - what he had for lunch or indeed if he has had lunch - to the childhood memories. People really want to fix something - and while the best of intentions, it is really hard to listen to. That said, there are things that can be done for people where the dementia is not so severe - writing things down, pictures, ??

My mother prays daily for his release. She is a brave lady and while she winds me up, I admire her courage and strength. Me, I stopped praying long ago but I echo the sentiment in my own spiritual way.

I have reorganised my mother's finances - we have an interesting situ whereby because he is not violent, he is not entitled to funding for his care. The money comes from his bank a/c - not sure what happens when that runs dry. I expect the Well-Fair state will kick in. So, she has re-written her will such that if she got knocked over, dad would get nothing ... which stops it going to the grubby hands of Gordon Brown. If I had the energy, I would start a rant in hell about the injustice of someone having paid their stamp and taxes (UK) all their lives only to discover that it doesn't cover certain sides of old age. I think "Call Me Dave Cameron" has an idea to combat this situ.

But yes, ensure finances are in order. Obtain power of attorney while you can. I don't know how, but ensure that the papers are in order for it to kick in at a certain point - and in a way that protects the aged one. My mother has drawn it up for when she goes loopy so we don't need to worry about court orders.

There are solicitors who deal with old age and can advise but wills and power of attorney is something that can be managed - according to the old-person's wishes.

The original q: how do you cope? The answer, I don't. I rage and grieve for my father who is not yet dead and is ravaged by a cruel disease. I put my parents first in all I do - within a certain level to ensure my sanity. I have excellent relationships with neighbours who are often the recipients of a bottle of wine - and are quietly keeping an eye on mum. For example - has she opened her curtains in the morning?? I have phoned the GP on a couple of occasions - wow did I feel treacherous - but there were things I needed to do / say / hear.

I remember my memories which are wonderful, I talk to my parents about my childhood. I don't know if dad ever connects with what I say but I am thankful for great memories, and so impart my gratitude and hopefully make them feel good about what they did - and also talk about "now I am grown-up" so that with my mum, she is aware she is dealing with an adult (I wish!)

I am not old in my opinion (haha), but I know at some stage I need to prepare for my old age and I wonder how many of us spend our lives in blissful denial of impending infirmity, and wonder whether there is a better way of preparing for old age?

Sorry, what a glum post. How lucky am I to have had great parents. Better to be troubled by frail elderly parents who did good - then be washing hands of bad parents.

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Josephine

Orthodox Belle
# 3899

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quote:
Originally posted by PeteC:
Speaking as someone young/elderly, but with increasing age-related disabilities to go along with other disabilities I offer the following:

1. An every-two-weeks housekeeper. Mine does the floors, dusting and cleaning, changes sheets and does any other laundry outstanding. She also drinks coffee and while working hard, she maintains a constant chatter with me while I drink my coffee.

I arranged for a housekeeper for my parents, through the area agency on aging. They had a program where they had housekeepers who were bonded and insured, and they did the background checks and such. And, as a bonus, they trained the housekeepers to spot signs of sudden and possibly decline (e.g., the burners on the range on, with nothing cooking). The housekeepers would report such things to the agency, who would call a designated family member.

I told my parents that they could fire her if they wanted, after she came out the first time, but I would appreciate it if they would let her come out at least once. They were more than a little bit annoyed, but as I did not offer to pay for the service, they were not mortally offended. They let her come, and she came out every week as long as they lived.

You might be able to find something similar where your parents live. It made a big difference.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

Posts: 10269 | From: Pacific Northwest, USA | Registered: Jan 2003  |  IP: Logged
Janine

The Endless Simmer
# 3337

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There was an element of making sure Mama and Mom-in-law had opportunity to enjoy the music of their young adult years, during their final years. The same way I did with the residents of the dementia wing at the nursing home I worked at years ago.

Never had actual dementia with either of them -- meaning, no diagnosed, obvious-to-a-layman dementia. But both had such pain to bear for so long, and some questionable circulation at times, and heavy medication/lots of medication. So it seemed to us there were some of the... mechanics? processes? traits? of dementia kicking in, sometimes.

It seemed more than just the pleasant nostalgia of listening to the old music; it seemed to soothe and cheer like a drug, itself. They seemed to need it.

One of the things my daughter did for her grandmother in her final months was to stop by once or twice a week, to do some housework and to sing the old hymns.

And there were times my poor mother, in her final days, seemed barely able to draw a breath -- but if you popped her some vintage Elvis Presley or Conway Twitty in the sound system she'd be dancing in her bed.

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I'm a Fundagelical Evangimentalist. What are you?
Take Me Home * My Heart * An hour with Rich Mullins *

Posts: 13788 | From: Below the Bible Belt | Registered: Sep 2002  |  IP: Logged
QLib

Bad Example
# 43

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My mum is fiercely "independent" despite being severely sight-impaired, hard of hearing, crippled by arthritis and now confusion and memory problems are creeping in as well. She lives in a special block of flats with an on-call emergency service, has carers in night and morning - my sister (who lives a 5 minute drive away) calls in pretty much every day, sometimes twice a day - and occasionally takes her out shopping, if the weather's fine, or brings the shopping in.

The thing is, it's OK when it's OK - if everything's routine, then Mum can cope, but as soon as anything changes, things can go very wrong, very quickly.

It's becoming a huge strain on my sister, though she has 2 grown-up children nearby who also help. But really, Mum's "independence" is at the price of my sister being on the end of the phone and running all her errands.

And because mum's sense of proportion gets skewed, especially when she's ill, she's likely to call my sister out to discuss something completely trivial (which could have been dealt with on the phone) and then not call immediately when something quite serious happens, because she doesn't want to be a "nuisance" - but, of course, some problems get much bigger when left unattended for a few hours.

I keep wondering if I should move closer, as I can only really help out at holiday times - and the strain on my sister is starting to be a serious worry.

For Brits - let me reiterate the advice about Power of Attorney - get it sorted before things are desperate. Most banks are bloody awkward about it; you need to sort out the hassles whilst your elderly relative is still mentally competent.

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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.

Posts: 8909 | From: Page 28 | Registered: May 2001  |  IP: Logged
Doublethink.
Ship's Foolwise Unperson
# 1984

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The way power of attorney works has changed since the introduction of the new mental capacity act in 2007. There are now at least two types, one financial only and one that delegates other decisions like health care (I think). If this is going to be relevant to you, worth checking out the state of play early.

Currently in the UK, I think your savings need to have reached below £16,000 before social services fund the bulk of care - but there is a sliding scale before this of the proportion they pay. Again, well worth investigating the actual limits and so on. Government initiatives in play at the moment, mean you can get an assessment done - and work out if you want the care organised by the social service or in some circumstances you can have the money paid over and organise it yourself. This can mean the difference between paying for a home or a live in 24hr carer for example. Oxford aunts, for example, are about £700 a week for someone who will sleep in, cook, drive etc with one day off a week. £700 a week is about the going rate round here for a care home.

Also you have the right to a carers assessment, if you are doing a lot for the person concerned. This can *sometimes* lead to a little extra money for stuff, also links to carer support in your area.

Re inheritance tax, the limits are quite high - something like estate valued over £325,000 or joint if linked to deceased spouse (£650,000) so I am not sure how often that is a relevant consideration.

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

Posts: 19188 | From: Erehwon | Registered: Aug 2005  |  IP: Logged
Mark Wuntoo
Shipmate
# 5673

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Yes, the Power of Attorney stuff changed. I had one for an elderly lady which I registered with the Court of Protection when she finally went beyond make decisions - this happened just before the changes and my understanding is that it is still ok. The old lady is now in a Nursing Home and I am fighting my Primary Care Trust to get full funding - just past the first 'Checklist' stage and going into a full assessment later this month. Wow, am I learning fast. [Ultra confused] And all to protect her house for the beneficiaries of her will. It feels so pressured and I am sure I could not manage if there was any other major event in my life.

Both my mother and my mother-in-law had dementia - both have died.

It feels like a continuous fight to get what one feels is due for one's elderly relatives / friends. The only bright bit (if you can call it that) is that when my mother-in-law was dying we suddenly realised that The Brain Bank would like her brain tissue for research into dementia - the hospital knew nothing about this but the doctors treating her were very interested in the idea and cooperated fully - it was all set up within three days - just before she died, when and the Brain Bank immediately stepped in to do all the necessary paperwork and collection. Mrs W and I felt that something good had come out of many years of pain and frustration.

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Blessed are the cracked for they let in the light.

Posts: 1917 | From: Somewhere else. | Registered: Mar 2004  |  IP: Logged
Piglet
Islander
# 11803

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As someone who has aging parents on the opposite side of the planet, I can't offer much in the way of practical advice, just sympathy.

My mother (now aged 82) has been in the geriatric ward of their local hospital for eight years; she gradually developed a form of dementia (not Alzheimer's) starting in the mid-1990s which took in turn her balance, short-term memory, continence and mobility. When she got to the stage where she was having falls from which Dad couldn't pick her up by himself, she went into hospital. For several years now she's been completely bedridden, and I doubt that she even recognises Dad, although he visits her twice a day, every day.

He's in relatively good health (he'll be 85 next month) although getting a bit frail, especially since breaking an ankle a couple of years ago, and still drives (he bought a new car last year). He won't get help with the house or garden, despite my entreaties ("Dad, what you need is a serf ...")

I can only offer [Votive] for all those who are in this predicament, whether as putative carers, or those needing the care.

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I may not be on an island any more, but I'm still an islander.
alto n a soprano who can read music

Posts: 19618 | From: Fredericton, NB, on a rather larger piece of rock | Registered: Sep 2006  |  IP: Logged
Gee D
Shipmate
# 13815

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Elspeth, you have my sympathies. My father had the same sort of illness; not every patient with a senile dementia has Alzheimers. My father lost memory and almost every learned function, with speech being the last to go. All this was gradual at first, but then accelerated. After caring for him for 18 months or so, he became too much of a burden for my mother. The decision to move him into a nursing home was made by her, my siblings and me without any difficulty. And our spouses were part of it all; don't forget them, as by the time your parents reach this stage, the in-laws will have been around for quite a while, too. Although Dad resented it at first, after a very short time he did not really know where he was. Fortunately, there were signs of all this happening, and one of Gee's solicitors was able to do the necessary documentation to enable proper management of his affairs once his capacity had gone.

Gee's mother went very suddenly, so there was no problem. Neither my mother nor Gee's father shows any signs yet of mental incapacity, although his father had to move to a nursing home last year. My mother is still quite independent in most respects, but the time may well come sooner rather than later. Again, the documents have been done in anticipation.

I think the real answer is not to leave matters until they have reached the stage of urgency. Nor should there be a "family conference" with all the dreaded overtones. Lots of casual and general talking starting well beforehand will reach a consensus of what is to be done, and what will be the trigger.

Strangely, my father could always remember Dlet, who he was and how he fitted in, although he was born just a few short weeks before Dad went to the nursing home. The quirks of the human mind are all but infinite.

Madame

My first individual post!

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Not every Anglican in Sydney is Sydney Anglican

Posts: 6724 | From: Warrawee NSW Australia | Registered: Jun 2008  |  IP: Logged
Alan Cresswell

Mad Scientist 先生
# 31

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Gee D and 'Madame',

Can you please maintain seperate identities. It gets very confusing when more than one person uses an id. We request that 'Madame' finds a suitable screen name and registers on her own behalf.

Alan
Ship of Fools Admin

Posts: 32134 | From: East Kilbride (Scotland) or 福島 | Registered: May 2001  |  IP: Logged
Beenster
Shipmate
# 242

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Does anyone know where i might go to help my dad's case? His gentle sweet docile dementia is rendering his case to receive funding for his home fees a non-starter. If he was aggressive, hostile and uncooperative, then we would have a high probability of getting funding.

He will have to pay for the funding out of his savings until - I forget the figure - it may be the £16k mentioned above.

It is not really about the money tho, when his money runs dry (or down to £16k) then social services kicks in. But the principle sucks. He has worked all his working life and paid his stamp and taxes so should be getting something paid. I would concur that his pension payments go towards his keep - just not his savings.

Anyway - I have 3 thoughts :
- get him reassessed - he has deteriorated greatly since he was assessed in November - and we are allowed to have him reassesed at any time.
- write to MP
- if our case is rejected, then to go to appeal (we will be allowed to do that)

Oh how we fail our elderly. I thought the welfare state was for cradle to grave?

I am more angry about the principle - that despite being told that he is not allowed home as he is not safe, he is not entitled to continuing care payments. There is a massive contradiction in the system.

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Doublethink.
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# 1984

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Have they not found him a placement or a care package in his home ? In which case go to your mp. If they have the placement / care package, and you simply don't want him to have to spend his savings - then I think you are probably on a hiding to nothing.

The health care is provided free at the point of use, and all the medicine. But socal care *funding* will not kick in until his savings decrease.

If he were sectioned under the mental health act - due to his dementia - then I think they might be obliged to fund housing upon his discharge. (Which might be what you have been told re whether he is docile or not.)

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Beenster
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Think² thanks for your thoughts. I think I am just really fed up with the system. He has not been sectioned as such but the consultants / doctors made it clear that they would not discharge him from hospital to his home - but only allow him to leave to go to a care home. On no account was he to return his home.

I think it is the contradiction that is galling. On one hand, he is declared as needing specialised care - he was rejected by one home as he was too sick and they wouldn't provide such care. On the other hand, he has to dig into his savings.

I know that sounds really tight - the bottom line for me is that it is what is best for dad and I would move heaven and earth to ensure he is properly cared for.

I happen to agree that his pension should go towards his carehome - but not his nursing care etc.

I agree - that we are probably "on a hiding to nothing" but we really have to try for him. Mother - very upset. Brother - ranting and struggling with the contradictions in the system.

I think I am really angry about the whole system that really lets down the elderly - and vulnerable people - eg unemployed, those who are long term sick, etc.

But ... it is only money and I have to keep reminding myself that. And furthermore, it really isn't a huge deal of money.

Will try the MP route tho. The whole thing has a bad smell.

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Doublethink.
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If he wants to come home, and they won't let him home - they need to have done a mental capacity assessment. They potentially can use that instead of the mental health act.

Might be also worth arguing the toss over whether he needs to be in a home - orwhether he he needs a 24hr carers in his own home plus district nursing input. Costs of staffing at home are not necessarily more than a care home - and at least it is a familiar place.

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Piglet
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Beenster, I don't know where your father lives, but as you talk in £ sterling, I'm assuming it's the UK. When my mother first went into the local NHS hospital (in Scotland - that may make a difference - I don't know), it was to the ordinary medical ward, initially for observation. When they needed the bed, she was transferred to the secure geriatric ward, and assessed by medical staff, social workers and so on to establish whether that was the right place for her. They decided it was, and she's been there ever since.

If your father needs 24-hour medical care, that may be the best option for him. If it's an NHS facility, they shouldn't take his savings (unlike the local authority); in my mother's case, everything except toiletries and nightclothes is provided.

I hope things work out for the best. [Votive]

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alto n a soprano who can read music

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Poppy

Ship's dancing cat
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Beenster, your father is going to have to pay for care until his savings run out. It sucks but that is how the system works. Dementia beds are in really short supply which makes the choice of a nursing home pretty well non existant. You can request a reassessment if you think he has got worse over the past few weeks but you are not going to get free care unless he is in hospital or sectioned. If he falls over or gets flu or gets an infection so that he has to stay in hosptital that is the cheapest option, but not one that anyone would want.

There may be an intermediate care bed which would get him out of hospital and into something that is a bit like the old convelescent hospitals but they aren't in every PCT and they are for medical needs rather than long term care needs, but you never know, it is worth asking around. Try your local Age Concern and Citizens Advice Bureau for information on the local situation.

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Mark Wuntoo
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I have to rush out now but will come back later this morning with what I think are some useful comments and possible links.

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Mark Wuntoo
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quote:
Originally posted by Poppy:
Beenster, your father is going to have to pay for care until his savings run out. It sucks but that is how the system works. Dementia beds are in really short supply which makes the choice of a nursing home pretty well non existant. You can request a reassessment if you think he has got worse over the past few weeks but you are not going to get free care unless he is in hospital or sectioned.

Poppy: that is not my understanding. People in Nursing Homes do get fully funded care if they have a Primary Health Need – that is where it gets difficult to convince the NHS! But it is possible.
Around our part of East London there are vacancies in nursing homes - but not all homes are rated above 'adequate' and this may deter Local Authorities from placing a person who needs nursing care.

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Mark Wuntoo
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# 5673

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Some of this is probably old hat to you – but here goes, it may help someone.

We have recently had our request for fully funded nursing care turned down – at the first stage, the 'Checklist' assessment. We have appealed and have been given a full assessment later in January. If that fails, we will take it to the Ombudsman. If that fails there is another option which I mention below. I am not living in hope but owe it to the old lady for whom I hold Power of Attorney.

I knew it would be a real struggle so I was, and am, determined to take it all the way if necessary.
To be honest, so far I have found most people very helpful – but we are only part-way through the process.

I contacted the top person in my local Primary Care Trust in the first instance: she passed it down the line to a second 'manager' who passed it down to the relevant local manager. I have found it important to copy my subsequent letters to all of these people, whilst dealing with the Manager of our local 'Continuing Health Care Team, Older People'. When people are accused of negligence, as was the case with us, they tend to jump if they know their boss and their boss' boss know about it.

Things changed in July / October 2009 in a government attempt to rationalise procedures across the country – so you may find, as we did, that the nurse/s who administer the assessments are not up to speed with the new guidelines. Thus the assessment may become fundamentally flawed, making an appeal easier if the decision is negative. In any appeal you should ask for a full assessment straight away without a second Checklist assessment.

I see you had an assessment in November (2009?) so you may know this – but look into the procedures. You don't say whether this was a Checklist assessment or one using The Decision Support Tool. But, for example, did the nurse suggest the description within each health domain, starting with the most serious – this is my reading of the guidelines, whereas our nurse started with the lowest level and, of course, everyone could agree with that! Did she give other people, especially you, an opportunity to challenge / suggest which level of need your father met? I had to constantly pull her back – and only agreed with one of her descriptions – and she did not always record my disagreement.

Yes, you can ask for a new assessment if there is a deterioration – and if this was anticipated, it should have been noted.

Rather than rehearse it all here, the following link will give you Department of Health Guidelines / User Notes / The Checklist and The Decision Support Tool (full assessment). Loads of reading but it has to be done. Documents dh 103161, 103328 and 103329 here

Beenster:
quote:
Does anyone know where I might go to help my dad's case? His gentle sweet docile dementia is rendering his case to receive funding for his home fees a non-starter. If he was aggressive, hostile and uncooperative, then we would have a high probability of getting funding.
This is exactly our case! And many others, too.
As I go through the process I am trying to keep in my mind that the assessment is made as if no medical intervention is in place: our nurse did not realise this and took no account of it when I read the paragraph to her in the Checklist meeting – thus the administration of the Checklist was flawed. Page 8 paragraph 29 of the User Notes for the Decision Support Tool state: “Needs should not be marginalised because they are successfully managed ….” - also in the Checklist guidelines at page 4 paragraph 18.
So medication to keep a person calm does not mean full funding should not be given. Don't know if your father is receiving quetiapine or something similar.

Beenster:
quote:
It is not really about the money tho, when his money runs dry (or down to £16k) then social services kicks in. But the principle sucks. He has worked all his working life and paid his stamp and taxes so should be getting something paid. I would concur that his pension payments go towards his keep - just not his savings.
Couldn't agree more. But if a family home is involved, it is more difficult.

Is your father not receiving any care funding – surely, if he is in a Nursing Home (not just a Residential Home, or he is in an EMI bed in a Home, he should be receiving the 'NHS funded Nursing Care' – about £130 per week?

There is a firm of 'Medical Lawyers' who say they can help. As I have no connection with them, I think it is ok to post a name here. If not, please would a Host remove it and I will send it by PM to Beenster. Cheselden Continuing Care (in Cheshire) could not take on our case yet as we are in the process of an appeal. They apparently will do an initial assessment for free and take on the case if they think they can win. No idea about fees.

I started with a really helpful document from The Royal College of Nursing and others - go to the RCN web site and download the PDF document entitled 003031-1 'Guide to Fully Funded NHS Care'
This outlines two test cases (Coughlan and Grogan) and gives the text of a suggested letter of appeal to the local PCT.

Lastly, if you happen to be in the London / Essex area, I would be happy to meet up to share experiences.

Sorry I have gone on. Hope some of it is useful.

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Blessed are the cracked for they let in the light.

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Poppy

Ship's dancing cat
# 2000

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quote:
Originally posted by Mark Wuntoo:
quote:
Originally posted by Poppy:
Beenster, your father is going to have to pay for care until his savings run out. It sucks but that is how the system works. Dementia beds are in really short supply which makes the choice of a nursing home pretty well non existant. You can request a reassessment if you think he has got worse over the past few weeks but you are not going to get free care unless he is in hospital or sectioned.

Poppy: that is not my understanding. People in Nursing Homes do get fully funded care if they have a Primary Health Need – that is where it gets difficult to convince the NHS! But it is possible.
Around our part of East London there are vacancies in nursing homes - but not all homes are rated above 'adequate' and this may deter Local Authorities from placing a person who needs nursing care.

In theory fully funded NHS care in nursing homes is possible but rarer than hen's teeth around here in the home counties. The eligibility criteria for LA care has been set at critical, so an elderly person needs to be in a close to life threatening situation before there is any input from social services. My experience is from a LA perspective as that is where I work.

If you can tackle it from an NHS angle and medical need you probably have more chance of getting somewhere. Good luck.

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At the still point of the turning world - there the dance is...

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Mark Wuntoo
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# 5673

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Yes, it's very rare. But there are 4 fully funded people at the Nursing Home that I am in contact with, so I understand.

Surely Social Services have an obligation to fund a person (subject to financial considerations)?

As I understand it, the approach for fully funding is to the Primary Care Trust - the assessments take place by a multi-disciplinary team/group which includes a Social Worker and family member / legal representative as well as the NHS Continuing care nurse.

Or am I wrong?

I am not giving up yet. [Big Grin]

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Poppy

Ship's dancing cat
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The LA only has an obligation to fund a resident for social care (e.g. care home, carers going into the home, respite care, meals on wheels etc) if they have less than the threshold in savings and they fall into the eligibility criteria that has been agreed by that council. Most councils only fund critical and severe. The authority I work for only funds social care for people who fall into the critical category.

For a bit of bedtime reading you could have a look at this consultation paper which gives an outline of the criteria towards then end. All this is in the context of govt thinking about funding and provision of social care within 'Putting People First' and 'Fair Access to Care (FAC.)

Don't know if that helps.

Edited for carp code

[ 06. January 2010, 18:39: Message edited by: Poppy ]

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At the still point of the turning world - there the dance is...

Posts: 1403 | From: The green heart of many roundabouts | Registered: Dec 2001  |  IP: Logged
Mark Wuntoo
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# 5673

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Thanks.

To be clear - are you referring to people who are relatively healthy but who decide to go into a Residential Home?

I suspect that I have not come across such people - only those who are 'too ill' to stay at home and are eligible for part-funding by the NHS. And therefore, I thought, were eligible to have their social care needs met when they fall below the savings threshold.

I will have a read of the document.

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Blessed are the cracked for they let in the light.

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Mark Wuntoo
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# 5673

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Wait a minute - I have remembered some assessments by a Social Worker - I think I'm with you now. The crucial point is the level of need for social care, as opposed to nursing care.

Forget it - I think I've got it.

Sorry for being dim.

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Blessed are the cracked for they let in the light.

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Beenster
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Oh thank you so much for all your thoughts. Most kind, much appreciated and all insights helpful.

One other practical conversation to have - is to try and find out whether someone should be a do not ressucitate, what to do with organs, etc.

Wondering how other people are getting on??

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Mark Wuntoo
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My mother-in-law's brain tissue was donated for research into dementia. The Brain Bank (several locations in UK) or Alzheimer's Society will help. Has to be done soon after death, of course, set up beforehand link here The donor need not have had dementia - 'healthy' brains are needed as well.

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Blessed are the cracked for they let in the light.

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duchess

Ship's Blue Blooded Lady
# 2764

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quote:
Originally posted by Mark Wuntoo:
My mother-in-law's brain tissue was donated for research into dementia. The Brain Bank (several locations in UK) or Alzheimer's Society will help. Has to be done soon after death, of course, set up beforehand link here The donor need not have had dementia - 'healthy' brains are needed as well.

God bles her. My grandfather had dementia and I fear others like my mother might get it someday.

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Aravis
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# 13824

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My father's been in hospital continuously since April for various reasons, most recently for a minor stroke following two lots of surgery. He's 82, my mum is 87 and she doesn't feel she can cope with him at home, even with a large care package.
The complication is finding some type of home that will meet his needs; he doesn't fit any standard categories. He has very little vision and a lot of sensory loss in his hands and feet, and limited use of his dominant hand following the stroke as well, so he can't really manage personal care with any level of independence. However, he's fairly mobile with a walking frame, so he's not a typical nursing home patient. His mental health needs are also confusing people; he doesn't have dementia, and is still capable of holding detailed intellectual discussions on some topics, but he has almost certainly had undiagnosed mental health problems for most of his life and his tendency towards paranoia and obsessive ideas is getting more noticeable.
The manager of a home which I think would suit him is assessing him on Tuesday and I'm desperately hoping he won't be in a weird mood and put them off...

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Beenster
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Aravis that is really hard - no helpful advice but I hope you have a productive visit. Does sound like your dad would benefit from some external stimulation - radio ?? The home dad is in plonks the residents in front of the TV all day. Personally, I am sure dad would be happier sitting in his room listening to classic fm all day - but that is not practical. For you, it would be worth enquiring whether something could be provided to keep his active brain utilised. Anyway I wish you well.
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Aravis
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# 13824

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Thanks, Beenster. I have suggested the radio with headphones on the ward he's currently on, but he isn't keen on the idea - he has had concentration problems recently and I think it bothers him when he feels he can't keep up with or take in what he's listening to. It's different having a conversation because he can spend as much time on things as he wants (within reason!) and ask people to repeat things.

Another problem has been professional and personal boundaries - as an occupational therapist, though not based in a hospital, I know some of the staff involved in his care and one or two of the other patients on his floor. It's odd when they have goal planning meetings for him and want family members present; everyone goes round the room introducing themselves and of course I say, "Hi, my name's Aravis and I'm the occupational therapist...no I'm not, I'm J's daughter..." and I have the added dilemma of whether to discuss him at these meetings in professional language or to say things more colloquially.

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jacobsen

seeker
# 14998

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You could say things twice, once each way? That would certainly keep the others in mind of your dual role.

How did the assessment go?

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Janine

The Endless Simmer
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If they don't already know you're an occupational therapist, announce that you are, and that you're the Token Family Member.

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Avalon
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We have 5 aging relations we have had varying concerns over - 2 sets of parents and a childless, unmarried aunt of my husband. The last 15 months have been chaotic. I've lost track of the hospitalisations but 3 of them have had lengthy, complex stays and one of those has had a further 3 or 4 trips. One more comes up next month and that has involved us in finding respite care for frail, dependant father. In fact the only one who hasn't threatened actual hospitalisation is well into his 80s with very little sight remaining. The aunt is 400km to our south, one set of parents are 500km to our north and the other set over 1,000 km to our north.

I don't know how we'd survive if it wasn't for a brother on one side who is a nurse and a sister on the other who volunteered for committees on aged care to learn the system for her mother-in-law.

Even then all plans can go astray if the aging one does assert their decision making on failing ability to discern. I think paranoia may go with the territory without being, necessarily, a sign of undiagnosed mental illness. The sister, who does still sit on aged care committees and values her reputation there, found herself in the mortifying position of having the aunt accuse her of bullying her about her affairs (she would visit, sort out all the unpaid bills and have them paid), was sent a terse letter from the aunt's solicitors revoking all the arrangements put in place for her pending dementia and ordering her to cease using it (which she hadn't) and was finally accused of stealing her will. Supposedly the aunt had taken it out to wave in her niece's face and explain why she'd cut all her family out and that's when it must have been stolen. Niece has no recollection of any event even vaguely like this. The cleaner has also been sacked, accused of stealing. Whole family is now too scared to visit for fear of what they'll be accused of stealing, the solicitors can't speak to any of the family and the aunt doesn't have a coherent and consistent story on the phone. The solicitors may have had one or two will changes and power of attorney changes too many and asked for a medical assessment.

I don't think I have any answers on helping or standing beside someone in the aging process. I seem to have done more than my fair share of getting them offside pushing for arrangements about driving, housing and finances which seemed workable. It seems to be a bit like the unexpectedness of dealing with children sometimes. Children with the car keys in the driver's seat. On occassions I've looked at one or the other of them and thought, "I know what you were like as a child before you were taught some social conditioning about behavioural boundaries". There seems to be some reversion to before then. That really scares me both for them and for what's in me for my own future.

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Jengie jon

Semper Reformanda
# 273

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I don't know if my parents are in a "younger" age bracket (both eighty), but what I have with my father is a lot of fear of doing things, that he would have done twenty years okay. It is as if his social conditioning (which he often rebelled against as an adult) has taken over. To put this in perspective, my father as a child was not allowed to do many things in case he became excited.

Jengie

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Beenster
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# 242

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Avalon, i truly undedrstand the fear of the future issue. I would so want to be shot if I reverted to the monster I was when I was a teenager.

Some of the stories - well one wonders how people carry on. Some things are so very very hurtful. And endlessly so.

Avaris, been wondering how you got on?

Me, am looking forward to the olds at the weekend. I want to have difficult "finances" conversation with mum so she ring-fences her assets. As to dad's finances, I am coming to the conclusion that "it is just money". Really irrelevant in the scheme of things. Far more important that he is cared for well and is comfy.

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Aravis
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# 13824

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Good news! [Yipee] I heard today that the care home is willing to accept him, on a month's trial (from his point of view and theirs). I was really hoping this one would agree as it's not too far from either us or Mum, who can get there independently by bus, and it's also near enough the churches he attends for people to take him to meetings, which he really misses. Our vicar's mum has lived at this home for a couple of years so I know it is reasonably OK. I don't know how soon they can take him.
He's not looking well today and wasn't eating much when I dropped in after work, but hopefully that's something minor. We couldn't have much of a conversation anyway as he's on a 4-bed ward and two of the other men were on oxygen this evening, which is rather noisy. One of them has a nasty chest infection - not sure about the other. [Votive]

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Arabella Purity Winterbottom

Trumpeting hope
# 3434

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My sympathies with everyone. We are wrestling with my parents-in-law at the moment - they are 90 and 88, and still in possession of all of their marbles. However, he is going blind and insists on driving, and she has just had major surgery and is insisting on getting back to her normal routine. They are people who have lived exceptionally productive lives, and old age is annoying the heck out of them.

They live in the family house, which is a nightmare - multiple levels, freezing cold most of the time, and far too big for two. They are beginning to think about moving into an eldercare village, and we would desperately like it if they moved nearer us (we're the main support people). There's a big village about 4 minutes walk from our house, close to shops, on a good bus route, they have friends there...

Its hard for everyone - my partner's siblings (there are six of them) all try and push their opinions, but none of them lives in the same city (or even in the same country for 3 of them). The p's-in-law hate being "bossed", fair enough since they're still quite mentally capable. My partner is the meat in the sandwich.

So tough to be losing your physical capability when your mind is still fine. They're fighting tooth and nail to keep control of their lives, even to refusing in home help after the surgery.

My mum has been a huge help to us, because she can say the things we can't, even though she's a relatively spring chicken of 75.

--------------------
Hell is full of the talented and Heaven is full of the energetic. St Jane Frances de Chantal

Posts: 3696 | From: Aotearoa, New Zealand | Registered: Oct 2002  |  IP: Logged
Aravis
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Does your mum know anyone in the eldercare village? Could she make a few hints about how much better it would be?
I sympathise about the driving. I think my dad's macular degeneration (which was severe, and meant he was told by his doctor to stop driving) probably saved his and Mum's life; he'd had a few accidents by then through indecision or lapses of concentration, one of which was serious and wrote off both cars. Scarier still was when my uncle developed Alzheimers in his 50s and continued to drive; physically he was OK but he had very little appreciation of danger. I was in the car once when he suddenly decided to race another car on a foggy night on a winding country road. I seriously thought we might die.

Posts: 654 | From: S Wales | Registered: Jun 2008  |  IP: Logged



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