Forward Plan

[merlin]

I need a long term plan for the care of my wife and need some help.

I have been onto the alzheimers web site and others and I would say from the descriptions given that she has passed the mid point but by how much is difficult to judge.

Certainly I do everything during the day and at least once or twice a week have bad nights when she is up and down and can be quite aggressive on these occasions. As this is likely to get worse I am not clear how nursing attendance works. At what point does this become so excessive that it becomes necessary that she has to go into a home or can she stay at home.

Then there is the question of cost and facilities. The house despite its reasonable size only has 2 proper bedrooms. I am currently considering an extension, which would give it 3/4 bedrooms. Does nighttime attendance require a bedroom?

As for costs, on the basis of a quick calculation these are going to be large especially in the latter stages. Is there any state help or do I sell half the house?

Although I have done all the usual things via my GP and the memory clinic she refuses co-operate with anything or anybody and if I have to give medication it has to be done without her knowledge(not that I have been prescribed much). A private agency has provided a nurse in the guise of a domestic cleaner for 2 hrs a week and as she seems to have accepted her on this basis. we are proposing to ramp up the attendance so that I can get away for a bit. This is short term however and I feel that I am being carried along by events rather than controlling them.

Sorry to be so long winded

Merlin

 

[Kayla]

Dear Merlin,
There is an Attendance Allowance that you can apply for, at lower and higher rates, but you are likely to be turned down unless you use the ideal wording. I would advise you to ask for help from your GP, a Social Worker or someone from the local Alzheimer's Society. Mum was turned down for the higher rate of AA, even when the Care Home manager helped us to apply. Sometimes people go downhill very quickly, so you might not get much benefit from extending your house.
Medication can help calm down sufferers at night, but it needs careful supervision and the GP may not be able to prescribe, so the hospital might need to be involved. There are Day Centres and Respite Care Homes, which can be used before you think about residential care. The Social Services and Hospital may need to organise these for you. An nurse staying overnight in your house would be very expensive to have all the time, but might be useful if you were goiing away for a day or two. My Mum fell and is now in a nursing home. It seems to be easier to get help for physical disabilities than for dementia problems. Mum can't walk now and receives the higher attendance allowance and a nursing care allowance.
Kayla

 

[Margarita]

I am being carried along by events rather than controlling them.

What you may learn is that the only control Your going to have is only over yourself , (and then you may not even have that )

I am only joking you have to have some humour in all this.


But I mean it when I say the only control you have is over yourself as I have learn that looking after mum for 4 years .

If you can afford to have a carer in at nighttime go for it, build the extension SS will not pay for a night carer even if you are not self-funded.

It all boils down to how much saving your wife has to get Attendance allowances , but you can get a grant to put a shower/ stair life in when the time come when your wife can not get into the bath or up the stairs .

welcome to TP

 

[Mary Poppins]

Attendance Allowance

As far as I aware Attendance allowance is based on need and not how much you have in the bank otherwise my dad would not have qualified for it if it had been means tested, the allowance is awarded to the person who has the condition but the carer can be given the option to handle the persons allowance on behalf of the SS. My mum did this.

 

[Margarita]

Oh sorry I thought it was Attendance Allowance that was Mean tested , it must be pension credit that is mean tested then

http://www.direct.gov.uk/DisabledPe...Articles/fs/en?CONTENT_ID=10012425&chk=qVTHEi

 

[Norman]

Merlin
welcome to TP.
You need an assessment of your wife's needs and your own.
This fact sheet may help http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm
I would go for direct payments,that may help your night problem,but go for the assessment first.
This one will explain the benefits available
http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm
Come back if you need further advice
Norman

 

[merlin]

Kayla

Thanks for the info. In fact I have all the allowances in place plus the disregard allowance on the rates.

Real problem in using the facilities you mention is that my wife refuses even to consider the day centre/respite home(it is actually combined in our case). She probably feels it is for older people (she is only 68 and "early onset") or being snobby. It doesn't help that the day centre tends to look like a bit fenced in with notices talking about "older" people. To be fair it is new and very nice inside. It is getting her inside that is the problem! In the end I shall have to bulldoze it through but will have to grit my teeth to do so.

I have some sleeping tablets prescribed by our doctor called Zimovane. Again the problem is getting her to take them. I tried to disolve them in a cup of tea but the taste was FOUL, so have temporaly given up.

She is generally unco-operative because she does not seem to be prepared to admit she has a problem or more likely she is afraid because she realises there is a problem, hence I guess the "shadowing".

You are dead right about the differences in help for other disabilities. My sister's husband had prostate cancer and she had somebody on call 24/7 for a long time. Any problem, she called the emergency number and somebody was on hand to help.

Merlin


QUOTE=Kayla]Dear Merlin,
There is an Attendance Allowance that you can apply for, at lower and higher rates, but you are likely to be turned down unless you use the ideal wording. I would advise you to ask for help from your GP, a Social Worker or someone from the local Alzheimer's Society. Mum was turned down for the higher rate of AA, even when the Care Home manager helped us to apply. Sometimes people go downhill very quickly, so you might not get much benefit from extending your house.
Medication can help calm down sufferers at night, but it needs careful supervision and the GP may not be able to prescribe, so the hospital might need to be involved. There are Day Centres and Respite Care Homes, which can be used before you think about residential care. The Social Services and Hospital may need to organise these for you. An nurse staying overnight in your house would be very expensive to have all the time, but might be useful if you were goiing away for a day or two. My Mum fell and is now in a nursing home. It seems to be easier to get help for physical disabilities than for dementia problems. Mum can't walk now and receives the higher attendance allowance and a nursing care allowance.
Kayla[/QUOTE]

 

[merlin]

Merlin
Norman

Thanks for the web site details. I'll give them a go. I still havn't found my way completely around the Alzheimers web. I will say that I have mentioned "carers assessment " to both the memory clinic and our GP and both adeptly slid off the subject!!

Merlin

welcome to TP.
You need an assessment of your wife's needs and your own.
This fact sheet may help http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm
I would go for direct payments,that may help your night problem,but go for the assessment first.
This one will explain the benefits available
http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm
Come back if you need further advice


Norman

Thanks for the web site details. I'll give them a go. I still havn't found my way completely around the Alzheimers web. I will say that I have mentioned "carers assessment " to both the memory clinic and our GP and both adeptly slid off the subject!!

Merlin

 

[cynron]

Avioding The Subject

merlin. my pleas for a SS worker also fell on deaf ears, but i perservered and it paid off . I was awarded a x roads carer for three hours a week and some residential respite was arranged. It pays to be persistant

CYNRON X X

 

[connie]

merlin, sorry but you have to keep chipping awayat the SS.

The times I have been side stepped, or refused help, BUT, I am a cussed individual and will never give up. (Find sometimes it is a good channel for all my negative thoughts)

Am still battling to get "pressure mats" for Lionels bedroom, case has gone before the "panel", been approved, But still no mats - very STIFF phone calls today. to CPN, OT, and will speak with the consultant on Wednesday.

Best of luck for the future,

 

[Norman]

This is all good advice.
Do not let go, keep at the SS,it took an official complaint on my part,but I won.
Norman

 

[mel]

You know,it all seems so very frustrating.....why,when carers have enough on their plate looking after their loved ones, are we expected to chase around having to fight for all the help we can get.....just doesn't make sense does it?
first impressions for me.....I have a very good GP with whom my mum is now registered ,fortunately for me my GP's father suffered with AD so that was a good starting point....but waiting for the outcome of my carers assessment seems incredibly long....and waiting for an appointment at the continence clinic even longer.....by the time we go to that appointment we will have been waiting for 14 weeks before there was an appointment available
Wendy
x

 

[Sheila M]

Assessment

I dropped into the local Social Services office to pick up a form for the higher level attendance allowance. I filled it in myself and was successful in getting the allowance. I spoke to the care home for some of the answers and suspect their observation that mum didn't respond to the fire alarm was helpful.