disaster

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
susan.wisdom said:
... she has no idea at all how she got to hospital or who found her, nor does she have any idea she will never go back home. That will be the hardest thing to do. Is it best to come from us or the hospital? Any advice gratefully received.
Susan
Susan, my opinion (& it is only that, no such experience with an AD patient) would be, if at all possible, get the medics to present that verdict to her, in no uncertain terms. She will not accept it easily, if at all, but at least that will make them "the bad guys", not you & Mum. Also if possible, explain to the Doctor/s etc. BEFOREHAND that it will be a difficult thing to persuade her to accept this course of action, so that they are prewarned. And again, if it gets as far as a care home, explain to the medics. & staff there, so that they know what is going to hit them!

Back at the beginning of November you told us
susan.wisdom said:
With this the nurse took all the insulin and is contacting the doctor.
We are awaiting the next stage. The doctor will either have to give her back her insulin and let her get on with giving herself too much and ending unconscious again or get her sectioned and taken back to hospital. They would have to do this with her kicking and screaming or sedate her.
Are you presently in touch with her Doctor (GP)? Is it still on the cards that your Aunt would be sectioned & assigned to a care home for her own safety?

By whatever means that decision is made, my feeling is certainly that you should try to keep your Mum & yourself BEHIND the fan when the **** hits it, as it surely will from what you have told of of your Aunt's temperament.

And whilst my words and advice may sound cold & harsh, please know that I find the whole horrible mess absolutely heart-breaking, and feel the greatest sympathy for you & your Mum, AND for your Aunt.

(Final paragraph deleted)
 
Last edited:

Brucie

Registered User
Jan 31, 2004
12,413
near London
Both inmyname and Lynne have expressed view about their own situations [not those of the people being cared for in each case] that many will find uncomfortable.

Many will also think "yes, I can understand that".

However. we should all remember that Talking Point has members who are both carers, and people at the early stages of dementia.

Because of that I believe that certain sentiments might best be expressed using Private Messaging to other members who are understood to be open to what is being expressed.

That includes by no means all the Hosts.
 

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Please excuse me for tactlessness. I have amended my post & sincerely apologise to any readers who may have been offended or distressed by the personal opinion expressed.
 

susan.wisdom

Registered User
Oct 8, 2005
20
thanks- the psychiatrist visited her at home in November and the only course of action, unfortunately, according to him was to give my aunt back her insulin, as she was not apparently sectionable, and wait for the ineviatable readmission to hospital. This has now happened, the psychiatrist said that when that happened she would not be allowed back home. I'm not sure how they do that without sectioning her- we will soon see. It just seems so sad that because she won't have help because of her dementia, she has to go into a home.
Susan
 

daughter

Registered User
Mar 16, 2005
824
Hi Susan,

If your Aunt has no insight into her problems I personally see little point in informing her of the decisions you and your Mum have had to make on her behalf. Maybe I'm speaking out of turn here, I don't know your full situation of course.

All I know is that from my experience with my Dad, when the time came for him to go into a Home, he would not have been able to comprehend the idea that he was going to be living somewhere else soon, even if we had told him. It would have just caused him more distress. Any explanation from anyone would have been irrelevant because in his own mind he was already trying to 'get back home' (his house he lived as a child).

It's a fine line between 'taking over' and determining when such information is unhelpful. If the person with dementia is still functioning on that level, then maybe they should be told, but if they will be more confused as a result then I personally cannot see the benefits to them.
 
I

inmyname

Guest
I firmly believe that everyone should mandatorily prepare and sign and have witnessed a Living Will

It would save so much of the heartbreaking decisions and problems expressed on these boards

My Mother talked endlessly about making one because there was no way whatever she would ever want to sit Ga Ga in a care home .........as usual with my Mother talk never resulted in action hence we are now left with a real nightmare to deal with as i know darn well even in her worst state of dementia she will have to be dragged kicking and screaming out of her own home
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
When preparing my latest Will recently, my solicitor suggested I also complete an EPA for myself. I didn't do so [he was charging and I know I can do that for no charge].

The most important documents - in my opinion - that need to be in place are a Will, and an EPA.

For my own part, I'd also add in the Living Will [as I have done], but since the absence of such a document leaves the doctors to do what they deem appropriate according to Hippocratic Oath and their interpretations of that, then if only those of us make a Living Will who want to limit those actions, then I think it fits the bill.

No real point in mandating that people complete a Living Will to say "do nothing beyond what you would have done anyway".
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
I would add one more to that list -funeral arrangements.
Our funeral s are arranged and paid for. any special wishes stated.
Less grieve and problems for family left and less cash foe SS to maybe grab!!
I consider this important,it is my opinion,we are not here to influence others in our way of thinking.
Norman
 
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inmyname

Guest
Anything which reduces the amount the SS and the taxman can grab is definitely a good idea

Personally I am about to sell up and go travelling and spend the lot then if i dont catch myself before i fall the government will have to care for me ..... i am tired of paying taxes to fund the feckless and all those who enter the country illegally or never intend doing a days work

My Mother would never listen to good advice years back when she could have legally prevented the SS and taxman getting their hands on it ...........she was adamant there was no way she was going into a care home ...........and now look at the state she is in at 89 ........she has never enjoyed her hard earnt savings and only the care home or the taxman will benefit now
 
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inmyname

Guest
If a Living Will denies you the opportunity to refuse food and water etc if you by means of dementia or any other similar terminal incapacitating illness which robs the patient of their faculties then theres something very very wrong with our society

When totally fit and well we should all have a paramount right to determine what we will or will not accept if and when we are unable to care for ourselves
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
When totally fit and well we should all have a paramount right to determine what we will or will not accept if and when we are unable to care for ourselves
I'm not in total disagreement here, but we have to accept that life is not always as clear cut as we might like.

There have to be protections for people, and folks do change their minds sometimes when they reach a situation they have tried to predict earlier in life.

There also have to be protections for carers and medical people, and they will generally know when things have progressed beyond a resonable stage.

I believe that when someone reaches a certain stage, they just have to trust in others to decide what is right for them.

My Mum had a major debilitating stroke 3 years ago. It was clear that she would never be a conscious living person again. There was no brain activity.

My brother and I reviewed her situation, knowing that she - of all people - would not wish to be forced to continue in her state, so we told the doctors not to do anything above the very necessary to prolong her life. They agreed with that.

She died the next day, and I know we did the right thing.

The problem with dementia is that there are potentially many years of deterioration, requiring care, before that 'certain stage' is reached. The situation would be made much easier for families, of course, if the costs of care were taken over for them, as in Scotland.
you said earlier
she has never enjoyed her hard earnt savings and only the care home or the taxman will benefit now
if she gains benefit from her own money by receiving good care at a time when she is so vulnerable - and if that is the only way things work with our system in the UK - then try and see it that way... her money benefitting her, by giving her care.

I can say that more easily than most as neither Jan nor I ever stood to gain a cent from anyone anywhere. Families all either poor as church mice, or broken into shreds.

All our lives we worked - and by golly we spent it on trips abroad, and on our home, not on savings. Was easier for not having children, of course. :(
 
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inmyname

Guest
I simply wish my Mother had indeed enjoyed the fruits of her labour by enjoying loads of holidays abroad etc etc instead of always making do and mending and putting everything off until she was too old to enjoy anything whilst causing misery for everyone else

The major rows she has caused over many many years telling me that i should wait till i am old to go travelling are crazy


I would rather see deserving charities benefit from her savings than Care home owners or the taxman .........and if she could see or appreciate the reality of her current situation she would bitterly regret not enjoying things while she had the chance .

She most definitely would not want to land up in a care home nor would she have wanted to be a trouble to anyone yet that is exactly what is happening
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
yes, it is frustrating when one's parent have different views - frustrating for them, and for us. I found it best to plough my own furrow and leave them to theirs.
I would rather see deserving charities benefit from her savings than Care home owners or the taxman
While I agree wholeheartedly about the taxman, on reflection, I'd much rather give everything we ever had to a care home to look after Jan properly - even more than I would like to give to such a great charity as the Alzheimer's Society.

The public has a view - which I contest only in the case of Jan's home, as I only have knowledge of that - that the owners of care homes are Dickensian figures, sitting counting the massive financial gains they accrue from we poor folk.

The costs of running a care home - providing appropriate accommodation, staffing, food, maintenance, staff training, trips out, medical care, holiday cover, and so on - don't leave a lot for the company that runs Jan's home. The local PCT has 'managed' not to pay for Jan's 1-to-1 care though they agreed to do so a year ago, and the home has had to resource that itself.

A good care home is something very special, so I never slate the owners.
 
I

inmyname

Guest
" The local PCT has managed not to pay for Jans 1 to 1 care "

That just about sums up the situation for far too many patients

If they get free care in Scotland then given T Blairs promises and full page ads on the subject when he wanted to be elected so should patients in England

Everyone who has lived in the UK all their lives like your wife or especially my Mothers entire generation who saw in the start of the NHS and the promise of care from cradle to the grave has paid their dues and is fully entitled to receive care for free

There should be no question whatever of stripping them of their home or savings to pay for such care
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
I was defending care homes - my point was that the care home has covered the cost, though the PCT should have [was required to], and even agreed to it.

The system should work, in this case. It is not a case of funding not being possible under the present system.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,752
66
Toronto, Canada
I agree with Brucie on care homes. We do have the equivalent problems here in Canada, & some provinces have it worse than others.

But we have been very lucky in finding an excellent facility. We chose to have my mother in a private room for which the costs are a little over £1,000 per month. Money well spent - the home & staff are very good. Yes, there are problems but nothing is perfect. My mother does have a good income but my sister & I decided right at the beginning that if we had to use up her capital, we would. It doesn't matter to us if nothing is left at her death. Her money is to take care of her.

Our system in Ontario is that people without the means will receive subsidies to make up what they lack but not for private rooms, only semi-private & ward (4 to a room & very little of that left anymore).

So, inmyname, perhaps your mother is lucky that she does have the savings to get any extra care she may require.

I do agree with you about enjoying oneself now & not always saving "for a rainy day". But the older generations have that so firmly entrenched I don't know that it would ever change, regardless of cognitive ability.

Joanne
 
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inmyname

Guest
Well in our area its at least £700 a week for care homes so if our system was like Canadas we would have much less to complain about

From what I hear about the USA its small wonder lots of Americans find it cheaper to send their elderly on cruises that pay for care homes

What irks me even more is when my Mother was left alone in 1952 with a baby and me she was denied any state assistance whatsoever

Women who were left in that situation were expected somehow to work and raise their children how she did it heaven only knows so the way all these years later she and others of her ilk are treated is disgraceful
 

susan.wisdom

Registered User
Oct 8, 2005
20
I have managed to find my aunt an EMI home within 3 days!! However, she has been in hospital for a week now and they still haven't asked the psychiatrist to review her and tell her she can't go home, so she still keeps asking when she is coming home. They have also put her in a bay on the ward with other patients who are likely to be there long-term, unfortunately these patients are almost moribun, I know they can't help it but my aunt has gone from cooking and doing most things for herself, to doing absolutely nothing, being given no stimulation and no-one to talk to. With the pressure on hospital bed you would think they would get their fingers out and get on with organising her discharge. My aunt is self-funding and could be out by the end of the week in theory, but the way the hospital is going she will still be there this time next week.
Frustrated :
 

susan.wisdom

Registered User
Oct 8, 2005
20
my aunt has finally been assessed by psychiatrist and he recommends an ordinary nursing home. we have found one and will be going on Monday, as long as she doesn't mess up her assessment by the matron tomorrow. we constantly tell her she is not allowed but every day she asks when is she going home.
We are dreading Monday, here's keeping fingers crossed.
Susan
 

susan.wisdom

Registered User
Oct 8, 2005
20
my aunt finally went to the nursing home today, and, yes, she is absolutely furious. She says she has never been told where she is going and has never seen a doctor whilst she was in hospital. She had back ache after she arrived and my mum was visiting, mum asked whether she wanted her to see if she could have some paracetamol, my aunt said no as they might charge her for it!! She doen't want to pay for anything. She hasn't got any insight into the fact that if she doen't co-operate she may end up somewhere really awful. I hope she settles down.
Susan
 

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