Lack of Diagnosis

[Cymraeg]

We have an elderly relative who, in all but name , has dementia. Our own research and advice from a good friend shows this to be 99.5% true.

However, we cannot get anyone locally in the NHS system to give us a firm diagnosis. Is this because,perhaps, that once this condition is officially diagnosed then they have to kick certain procedures into action? This is what we feel is happening. Altho' she is in her own home and has a care service calling on her a few times a day , there still seems to be this reluctance of a firm diagnosis.

Any one else experiencing this type of problem now or in the past ? I will welcome any comments.

[poppynurse]

Has she been assessed by a psychistrist or geriatrician? These are the folk that usually make the diagnosis in my area, it may involve going into an EMI unit for assessment. Unfortunately if it is dementia there is little that can be done to slow the progress of the deterioration and so there is little to be gained in getting a formal disgnosis. The first step would be getting the GP to refer for assessment but your relative would have to agree.

[trixter444]

Cymraeg,

 

your best bet would be your relative's GP and to get a social worker involved, as Poppy says your relative will probably go into a assessment unit to be assessed by a Geriatrician or psychiatric doctor. However, if they feel she cannot stay at home or they feel she is deteriorating then they will kick certain procedures into action as you say. If you need any help PM me, Im a Home Manager of a care home that specialises in EMI and a Registered Mental Health nurse.

 

Trixter x

[PriorityOne]

When it was suspected that my Mum had Dementia/Altzheimer's, I can remember writing to her GP and asking for her to be referred to a Geriatrician... it was a long time ago now, but I know that I wrote and asked for a referral. Social Services also got involved as well.

 

I don't think anything would have been done unless it was pushed though.... and it took forever to get a formal diagnosis of Altzheimer's. We even had to find an EMI home for her ourselves.... it was horrendous. I think a lot depends on whether a person lives alone or not.... it seems that they are more likely to step in when that person lives alone and doesn't own it, despite the care needs being exhausting for whoever lives there with them.

 

If your relative doesn't already claim Attendance Allowance, then you need to request a pack and get the claim rolling.... regardless of whether she stays in her own home or not.

[Cymraeg]

Thanks for your input folks.

 

Her GP is useless and the times she's been assessed in hospital it's always been one of her 'good days'.

 

It's just one of those things that you feel more could be done. She's in her own home with carers calling a few times a day. Each day starts with the phone call to find out what sort of day it is today ....agressive,forgetful,apathetic,etc.

 

We are always on our toes for the rest of the day as a call can come anytime,as it has in the past. Anything from neighbours complaining the TV's too loud to carers saying they've found her fallen over when they've turned up.

 

As I said , we think something else could be done, but perhaps, reading other people's stories, we have to put up with our lot.

[PriorityOne]

The route that I took was that my Mum was becoming a danger to herself. She was still driving shortly before the GP assessment and had gone around a roundabout the wrong way... facing oncoming traffic. I was in the car with her at the time.... it was awful.

 

If you're getting no joy from her GP, then could you approach another GP at the same practice ? It's important to get her into "the system", so to speak. If your relative lives alone, then they are more likely to sit up and take notice if you think that she's becoming a danger to herself.... this needs to be in writing though.

[Cymraeg]

She does things that are a real danger. We had to change her cooker from gas to electric, for example, as she would turn on all the rings (unlit) then just walk out of the kitchen. She would do similar with the gas fire,now disconnected.

One of the biggest problems is that she 'wanders' . She gets bored and just goes out up or down the street. Fortunately it's a cul de sac so quiet most of the time. We've had reports of neighbours bringing her back to her house a few times.

She also does silly things too,like hanging t-bags on the washing line,but denies ever doing these things . . . 'I don't know how they got there' .

 

As I mentioned earlier , she always seems to have a 'good day' when she's been assessed in the past. SS seem happy that she has her own home and they can 'dump' her there and let her carry on with visits from care workers.

 

It's difficult too in as much as we would like her to be in her own home as she's lived there 30 years+ and it doesn't seem fair to bump her off into a home. As my OH is her only next of kin,it would be up to her and I try to keep the pressure off her;but when,one time, a neighbour had to pull her aunt out of a hedge and take her back to the house it hasn't been so easy.

Tell her GP/SS and they don't seem to believe you despite showing the scratches and bruising.

Could I get 2nd opinions away from her GP ?

We have some care workers on our side , but they're a private firm (not local authority) so we don't think they'd carry much weight.

[PriorityOne]

I can relate to everything you say. My Mum started to wander as well.... she had gone quite a distance when I found her on one of those occasions and was wearing a really flimsy dress in the middle of Winter . When I picked her up, she just said "Oh hello, I was looking for you !".....

 

I think the reason SS are happy is because they would expect her to fund her own care if she owns property, so may be waiting for your OH to instigate this... I don't know. This appears to be the sad reality of life as it is today though.

 

My Mums' situation was a little complicated because her house was/is jointly owned with her partner of 20 years....so the house couldn't be sold to fund her care and we didn't want that either. He's an elderly man as well, with health care needs of his own. He'd looked after her very well for some time, so we wanted to protect his interests as well.

 

Has your relative made a Will ? We were advised to check to see if Mum had made one and we also instructed her solicitor to act as Power of Attorney because none of us wanted that responsibility.

 

The decision was made to place her into a Home because her partner couldn't cope any longer... his weight had plummetted to 5 stone... and he was constantly stressed. My sister and I couldn't care for her either because of the full-time commitment that Altzheimer's needs.... so we found a Home ourselves that was secure.... so that we could rest assured that she could not let herself out and wander about.

 

The Home was funded by her savings until they ran out.... then SS picked up the tab. There may have been an argument for continuing care.. I don't know.... we were all so exhausted at the time. However, seeing as no-one had given a formal diagnosis of Altzheimer's anyway at that time (to my knowledge)... I doubt that we could have fought it.

 

I'm not sure if this helps you or not... but I do know that I felt so guilty for helping to put her in a Home when she had always said that she never wanted to end up in one years earlier. At the end of the day though, you have to do what's best and if she's a danger to herself as you say.... then you need to keep on with the referral process until somone sits up and listens. It might help if you can have something in writing from the private carers that you mentiopn, in order to copy these to her GP when asking for the referral to be made again.

[Cymraeg]

"but I do know that I felt so guilty for helping to put her in a Home when she had always said that she never wanted to end up in one years earlier. At the end of the day though, you have to do what's best and if she's a danger to herself"

This is the reality of it all.

 

We have attendance allowance set up,all her business goes through the bank so at least all her bills get paid , then my OH gives her pocket money. However about £80 went issing a few months ago and we think she either cut it up into little pieces or she flushed it away.

My OH has power of attourney that she can invoke at any time but we haven't felt the need to yet .We've kept that side as easy as we can.

 

It seems that we just have to keep on to the local authority until we get some action.

[PriorityOne]

It sounds as if you have everything in place as far as the financial side of it goes. Keep on at her GP for a referral.... even make an appointment yourself, if necessary. I know that they won't discuss anything with you as such because it's confidential, but at least the GP will then understand where you are coming from.

 

I can remember going to Mum's GP some time before she was assessed over something completely different. I went in there and said that I didn't expect him to comment on my Mum's health (confidentiality), but needed to make him aware of some of my concerns. Mum was refusing to go down to see him, but needed to. Together, the GP and I found a way forward... and he invited her into the surgery for an over 75's check-up instead.

 

During this time, her other health needs were discussed and she was able to get the treatment that she needed.

 

Worth a thought...

[trixter444]

Keep on at her GP and keep shouting to the Social services. If she is dangering herself then they should sit up and listen - its their job too. If it comes to it that she does have to eventually go into a home, please dont feel guilty about it, you can only give her so much care in her own home and you have to do what is best for her.

 

Financially if you are power of attorney it sounds as though you have everything in order, as PriorityOne says.

 

Good luck:)

[Cymraeg]

Unfortunately, yesterday, my OH's aunt had a fall and broke her hip. The surgeon who attended her as good as said dammed if we operate,dammed if we don't. With her recent problems and long term health issues it's not looking too good.

 

One odd thing,when the surgeon 1st attended her in A&E,he skipped thru' her notes and asked

"How long has she had Dementia?"

 

Makes my original query here academic now. It's going to be a long weekend.

[poppynurse]

Bless you, will be thinking of you all xxx

[PriorityOne]

If she is in hospital and they know she has dementia... they will be reluctant to discharge her without knowing that there's someone at home to care for her..... so although this is a vey stressful time for you, try and use it to argue for her care needs to be recognised. If you say that you will be looking after her, then you may find yourself right back to square one. If you say that you cannot look after her, then she may be assessed by SS while still in hospital.

 

Will be thinking of you....

[Cymraeg]

The op was succesuful yesterday. She's now the bionic woman

I will bear in mind what you say Priority One.Thanks for your thoughts too poppynurse.

[mazzab]

Hi Cymraeg

 

as a GP working in Wales I'd be very suprised if the prospect of "kicking certain procedures intoo action" made any difference to your Mums diagnosis and treatment from the Doctors point of view - it is not them that have to spend the money or do the work in any case!

 

It strikes me that there may be some uncertainty in the diagnosis itself - not all confusion is dementia. Other disorders - say an infection or other acute and time limited illness causing an acute confusional state (also known as delerium), and other mental health problems such as depression, anxiety or bipolar disorder - can cause periods of intermittent confusion such as your mum may be having (you mention good and bad days quite a lot). Dementia is, by definition, chronic and largely irreversible, but can also fluctuate.

 

From the point of view of treatment and safety it seems most things that should be done are being considered or have been done - ie reviewing environment, care and support etc.

 

The apparent cognitive improvemnets with Aricept etc are small, and most of the benefit is control of agitation etc. So many specialists do not prescribe such drugs automatically, and in any case they are all supposed to follow NICE guidaelines. So this may be why no specific therapy has been introduced. Otherwise its often a question of managing risk factors such as blood pressure and so on to reduce the risk of mini-strokes further impairing brain function.

 

I hope you continue to support your mum so sucessfully and passionately. The best looked after patients are the ones with concerned and active relatives because otherwise problems aren't always picked up or chased up.

 

Pob Lwc!