This is crazy

[Helena]

Everyone here says contact the doctor or social worker when a patient is showing symptoms of dementia

well again today I have spoken to my Mothers Doctor and response was :-

"Our staff have also noticed the difficulties your Mother has however with current legislation if the patient has no insight into their condition and is independantly minded and refuses point blank all offers of help and will not go into a home theres nothing we can do until a crisis occurs .
If she had a mental illness we could section her under the Mental Health Act but dementia does not qualify "

So until my Mother has a fall, is mugged , blows the house up by leaving the gas on etc etc we have to sit back and wait or struggle to cope with the situation

If thats the result of the Human Rights Act they can keep it

The world has gone totally mad

 

[daughter]

Helena, good that you have once again expressed your concern to the doctor but I see their hands are tied. How about trying Social Services? Perhaps they could help before you have to wait for a crisis. I think I would be using the phrase "danger to herself" to hopefully get their attention.

http://www.zarcrom.com/users/alzheimers/nh10.html

"A good way to ease people with early Alzheimer's out of independent living and into living with someone else is through a slow transition process: First a combination of frequent visits from caregivers who help with cooking and housework. Next, a meals-on-wheels program, a maid, and a daytime aid a few days a week. Then full-time at- home help--in either their home, or yours."...or a nursing home if appropriate.

I have no idea if these things can be arranged through Social Services, nor if you can get anything for free (I'm actually assuming not!) but I'm just thinking of things I might try if I was faced with your situation. Hopefully others will have more ideas.

P.S. I am assuming you mean by "The world has gone totally mad" as 'Lacking restraint or reason; foolish' and not 'Suffering from a disorder of the mind' but thought it best to clarify the difference because it is naturally quite a loaded word on this forum.

 

[Helena]

Hi daughter

Unfortunately my Mother will not hear of anyone least of all outsiders helping and she certainly would not pay for it nor could she afford to but of course she would not get it for free so that shoots holes in the advice bit

"The worlds gone totally mad " is an expression thats of my era and is not meant to cause upset on this forum

I am beaten by the claim that Dementia in the elderly is not classed at Mental Illness
If the Alzheimers Society can clarify this crazy state of affairs that might help

 

[jenniferpa]

The problem with "a danger to oneself" is that generally, there will have to be a specific event that you can point to. Everyone, potentially, can be a danger to oneself, so without a specific incident, or a pattern of behavour, you're stuck.

Helena - don't take this the wrong way, but why do you continue to try and help her? I realise that she's your mother, and you feel a level of responsibility, but no one could say you haven't tried. I can't remember, does she ask for help and then refuse it? Apart from contacting SS as daughter suggests (and as I expect you've already done) there doen't seem to be anything else you CAN do.

People talk about "tough love" in relation to teenagers (actually, having teenagers I don't necessarily agree with that), but perhaps, for the sake of your own health and sanity, you need to practice this with regard to your Mother, otherwise you'll continue to bang your head against this particular brick wall, with no result.

Jennifer

 

[Margarita]

Dementia is a decline in mental ability, which affects memory, thinking, problem solving, concentration and perception. Some forms of dementia, such as Alzheimer's disease, are degenerative i.e. they get worse over time. Other forms of dementia, such as vascular dementia, may be non-degenerative i.e. they may not get worse over time.


if the day come when you visit your mum and find she not at home she got lost and could not find her way home you call the police and tell them that she has dementia and is
Mentally incapable they go out looking for her .then the police if you agree can get her section under the mental heath act .so she can have a assessment done.

My fiend who is only 42 who is not well suffer from margarine black out confusion a decline in mental ability . Bad heart nearly had this done to her on Friday when she did not arrive home she live alone.

Her sister called the police when she did not arrive home at a said time her sister said she was mentally incapable that why they where worried about her so police went looking for her.

if my friend daughter had not said to the police she is mentally capable she can live alone.( Really, my friend cannot live alone) long story but is not going to give up her independence . That stops the police from sectioning her as all they needed was one relative her sister to say yes .2 of her sister say she could go into some sort of care home , but her daughter is respecting her mother wishes to live independent as long as possible

 

[Sally]

Hello all, mainly Helena!

People can and are sectioned under the Mental Health Act when they have problems arising from dementia but they do have to be at risk. It is sometimes hard to prove that someone is at risk until they do something risky! Although the doctor is right to say that if the person will not co-operate with health services it is impossible to get a diagnosis, social services are responsible for vulnerable adults no matter what their condition. So if someone needs carers going in to help with washing/dressing/cooking/shopping then they have to provide those carers even if the person cannot pay for them. You can ask social services to undertake a community care assessment - it would help if you could be there too when they visit. It is true though that if your mother subesquently will not let the carers in you have a problem. If this is seen as putting herself at risk then she could be taken into care, this is the point at which, if she was very vocal about NOT wanting to go into care, she could be sectioned.

This is another 'system' that is not ideal for people with dementia but the Department of Health is reveiwing it at the moment in light of a case called Bournewood:

http://www.dh.gov.uk/Consultations/...nsArticle/fs/en?CONTENT_ID=4113613&chk=oDJvUU

Regards,
Sally
x x x x x

 

[daughter]

Thanks for the information Sally, and the Bournewood case made very interesting reading. I noticed that the closing date was 17 June 2005 - does this mean it has taken over a year to review so far?

 

[Helena]

All these consultations take forever and a day with government ......they must spend most of their life in a drawer gathering dust

 

[Sally]

yes it has taken A Very Long Time. But this is because all the plans to overhaul the Mental Health Act of 1983 fell through at the last minute and they planned to incorporate changes post Bournewood into that. So now they are hoping to incorporate the new guidance into the Mental Capacity Act (MCA), let's see, have not heard anything about it lately actually, it is such a complicated area and personally I do not think it is as relevent to MCA so harder to slip it in.

 

[Helena]

Just goes to prove that whoever set up the Mental Capacity Act does not understand the situation

Even the medics dont understand Dementia so what help for the poor families trying to cope with the problems

 

[Grandaughter 1]

Hello Helena,

We too had big problems getting Grandad to agree there was a problem. He would always shrug us off and say he was "fine". Nan phoned the doctors on numerous occasions but they just said to bring him in! Nan wrote a letter to the doctor detailing his problems too.

One day Nan said "shall we make an appointment to get some pills for your memory problem" and Grandad said yes!! In the end he surprised us all but we finally got there.

I have great sympathy for people that have relatives that are in "denial" because all you want to do is help and you can't. It is sooo frustrating!

 

[Margarita]

Am I right in thinking that to do a liveing Will all one has to do is Write a letter to the doctor & put it in there medical records as I was reading that on the link that Nada left it said that.

My friend did ask me a while back to ask you all or find out from AZ main web page about a living will, but did not know how to bring it up , after what happen to her on Saturday and seeing that I am her only real friend I thought I better help her .

Its so sad really because she so young to be thinking like that ,but then she was always a postive strong willed forward plaining person .

 

[Helena]

Nada

Many charities etc may have fought long and hard for the Mental Capacity act but they cannot possibly have been very intelligent or informed if they left such a wide gap that Mothers like mine now fall into .........If I ignored the situation my Mother is in I would be held negligent

I am so so tired of Governments failure in so many areas to write laws that actually work or face the reality of situations

My Mother delights in telling me I am a stupid idiot.......when actually she is the one who stubbornly refuses point blank to see what everyone else has no problem seeing .......oh but of course thats the disease talking so thats alright

She insists her Front Door keys are not hers and do not fit her front door and no matter who stands there and proves over and over again that they open the door is called a stupid idiot

So I wonder what others would say about the so called intelligent people who wrote the Mental Capacity Act

 

[Helena]

So will anyone with an existing EPA then have to shell out another £120 for a LPA

or will an existing EPA cover both situations

 

[Kayla]

Dear Helena,
I think the reason that your mother and people of her generation have such a problem with Care Homes and Social Services, is that they are scared by the stories about life in the Victorian Workhouses. When my Mum was very distressed after her fall and move into a NH, she kept mentioning the "Workhouse". This seemed surprising, since she'd already been in a Care Home for nearly four months and she had been happy there.
I know Mum reached a stage where she was frightened to be living in her own house, because of her hallucinations and she got very lonely, as she'd lost track of time. Even now she forgets where she is or what time of day it is, but she is more or less settled.
If you've done all you can for your Mum and informed the Authorities about your concerns, then there isn't much else you can do. Perhaps you should take the opportunity of spending time with your husband and family, until she realises that she can't cope by herself. People who survive until they are 90 must be survivors and are often very stubborn. My MIL was absolutely determined not to go into a Care Home, but in the end, she was too weak to be allowed to leave hospital and go home by herself, and had to go into a NH, where she died of cancer at 91. She nearly achieved her aim of staying in her own home until the end.
Every time I see Mum, she wants to make me a cup of tea, but she can't even walk, and I have to tell her that the nurses are going to bring us a cup of tea later on. Then she wants to go in the garden or go to the shops, but she needs to be in her wheelchair. It's not really surprising that old people don't want to go into a Home, where they will be dependent on other people and not in control of their own lives.
Mum said to me one day, "It's not very nice being old when you have to be in so much pain." When I ask her if she has told the nurses, she always says that she doesn't like to bother them, because they have to work so hard and are aways busy. She still seems to worry more about other people than herself and wants to try and help, but can't really do anything.
I think it's all so sad and depressing because there isn't anything that I can do to help her and I don't know what the future holds in store for her. She is 81 and looks quite well in some ways. She is also very aware and can express her feelings quite well.

 

[Helena]

I do agree that theres a "workhouse" fear in my Mothers generation but also when they have been as independant as my Mother they simply refuse to see that they cant continue like that once they can no longer drive

If we had the system they have in New Zealand where every driver over 75 has to take a test each year they would make plans and face the issue instead of burying their head in the sand saying " I will face it when it happens " as my Mother has done .

My husband refuses to go near my Mother because he would well and truly tell her more than a few home truths ......and that will only cause more problems

I agree that staying away would be the answer so she gets herself into a crisis however i have to convince my sister to do the same but Mother manages" to twist the knife " with my sister and my sister takes the easy route and gives in

Its amazing how manipulative the elderly can be

 

[Kayla]

I know my Mum is probably completely different to your Mum, but I tried to find ways of keeping her in her own home for as long as possible. She already had a cleaner, a gardener and a carer to help her and we increased the carer's time with her to three mornings a week, help with bathing and dressing. I visited her myself nearly every day and took her out several days aweek. I suggested Mum could have an additional carer for the other days of the week, but Mum had been frightened by her falls, and realised for herself that she wasn't coping. A friend had also persuaded her that she needed 24 hour care.
In the end, Mum was pushing me to get things sorted out, and wouldn't even wait a couple of weeks until a place became available in the preferred Home. She decided to go into respite care until the more permanent place materilised. I tried to offer her choices so that she could make her own decisions and she would not feel or say later on, that I had tricked or forced her into a Care Home. It did make things easier for me later on, when she was so distressed in the Nursing Home. I knew I had no choice, and I was basically following her wishes before she had the fall.
Going into care is an admission that the elderly person can't cope any more and it is a truly awful situation for them, as well as the family. I would certainly have wished to keep Mum in her own home for longer, had it been possible. Sorting out the house is an absolute nightmare in all respects, particularly emotionally.
My husband also finds it hard visiting my Mum, as she always seems to be at her worst when he's with me. I have no idea why. I am an only child so I'm quite isolated and my children just visit occaisonally, but we just have to make the best of things.
I'm sorry about your Mum and your situation and I hope that you find a way of resolving it in the most suitable way. I didn't find the SS much help either.

 

[Helena]

Thanks Kayla

SS have indeed been no help .....apparently notorious for that in her area

I had Mother on the phone this AM distraught and saying she felt so ill and sick because she had a communication from DVLA .......it was only confirmation she no longer owns her car but no amount of explanatio of its OK dont worry would get through to her ........she seemed to think it was a court summons

Without doubt to claim Dementia is not a mental illness and they cant section her is totally crazy

 

[nice]

Unfortunately my Mother will not hear of anyone least of all outsiders helping and

Nada

My Mother delights in telling me I am a stupid idiot.......when actually she is the one who stubbornly refuses point blank to see what everyone else has no problem seeing.

Your scenario sounds exactly the same as mine, Helena. My mother refuses to accept anything is wrong, is fiercly independant and proud and has thoroughly rejected any help from carers and will NOT go to a doctor. Any mention of a care home would send her into orbit, she already accusses us of wanting to dump her in one. Her very muddled version of reality (which she makes up on the fly) is the stone cold truth and she won't be told otherwise.

She also has an ugly temper (which she always has had, if truth be told) and everyday we'll be treated to a colourful display of language directed at someone or something that has wronged her; either stealing something from her or hiding something from her...of course, it is SHE who has hidden or misplaced said object/s. Money is being wasted like you've never seen as she still has control over her finances (though not for much longer) and she literally throws it away.

She has gone wandering on 3 occasions and it's a miracle that we found her and we now have to make the critical decision of placing her in a home for her own safety as we can't watch her 24/7. We've also been told she can't be sectioned (the thought of that upsets me greatly, anyway) so we're now going to have to find a way to prepare the ground for her to move into a home with the help of social services...oh joy.

Unfortunately things HAVE to get bad in the current MH climate before wheels can be set in motion.

 

[Helena]

Actually she can be sectioned ,,,,,,,,Social services can section her as can the Police if she is wandering

Doctors dont want to section because they try to claim that Vacular Dementia is a medical condition not a mental one

Speak to the Legal Helpline girl on Alzheimers website number she will tell you how you can get her sectioned .........its needs the CPN or a consultant to be involved via Social Services

You will find all Dementia NH only admit via Social services

and yes your Mother and mine sound like twins