Advice needed...

[emscub]

Hello again everyone,

I just wanted to ask for some advice about getting help for my Nan (and my parents who care for her). In the past few weeks, my Mum has been to the GP and was promised that a visit would be arranged for my Nan. My Mum has since spoken to the Nurse at our practice and was told that a district nurse/health visitor would visit, as it is very difficult to get my Nan out of the house (and both my parents work full-time). As we are not sure when the nurse will be visiting has anyone got any advice they can offer about what to expect (my Nan has never officially been diagnosed with dementia, although the doctors are aware that she needs caring for - she has also taken the mini - mental state exam in the past although we don't know the results of this). We have been waiting for about 8 years for some help and we don't want to waste this chance if the nurse turns up unannounced. Has anyone got any suggestions of questions to ask and things to get sorted.

Also, my Mum is worried about arranging services for my Nan, as it is getting increasingly difficult to carry out tasks for her (washing her/treating her feet etc). Does anyone else have any experience of trying to get help whilst working full-time? Do the people visiting the house just let themselves in and out if there's no one else at home?

My Nan is becoming more and more dependent on my parents and even though we've been dealing with this for a long time, we all still feel as if we're right at the beginning help-wise.

Thanks,

xx

 

[Ruthie]

Care assesssments

Dear Emma

I think that your gran is entitled to an assessment of her care needs and your mum is entitled to a carer's assessment. The Alzheimer's Society main website should have more info, and there are references to this in earlier postings on this forum. If you click "search" at the top of the page, then type in "Care and assessment" quite a number of items come up. I have found a posting from Angela last October which talks about this.

In our case the Social Worker allocated to my husband carried this out for my husband with a lot of input from me, and came up with a care plan (which at the time included various forms of support including day respite care). He also gave me a form to fill in which asked about my situation and my needs (which mainly involved day respite care!).

As I said, I believe this is an entitlement, not just an option, from Social Services, so keep at them until it's done and implemented.

We also had a very good CPN allocated to my husband who has been a real support and help - there have been various opinions of the effectiveness of CPNs on this forum, but I can only say that in our case he was really helpful, and always got straight back to us if I phoned him when there was a crisis, and visited fairly regularly just to see how things were.

I do hope this is some help, but even if it takes some kicking and shouting, it's worth doing for the sake of your mum and your nan.

Wishing you good luck.

Kind regards

Ruthie

 

[Angela]

Sound advice there.
Your family is entitled to an assessment from social services. They will assess any personal care assistance that Nan may need AND assess what care your family IS and is able to provide, OR NOT.
Please contact your local S/S through your local council.

I'm a little surprised that the district nurse is calling. They are not qualified to make an assessment on mental illness, but its a start.
It would seem that Nan having not had an assessment of any type is not getting the care that she is entitled too from the medical side either, and so I would suggest that you re-contact the GP and ask for a referrel to a specialist. Hopefully then you will have the valuable assistance of qualified staff.
Please try to conatct your local AS branch too, they should be able to give you less general advise.

 

[emscub]

Thanks Ruth and Angela for your advice.

We have just been contacted by the hospital and an appointment has been made for my Nan to see the psychiatrist there. Is this a step in the right direction?? Is it still best to contact social services without a diagnosis or should we try and get referred to them through the psychiatrist or GP. What should we expect to happen at the hospital and are we entitled to ask for the results if any memory tests are done (for confidentiality reasons)?

Sorry to keep asking questions but we seem to have gotten nowhere in the last few years and I really want my parents to get some help while we are being given the chance again.

Xx

 

[Ruthie]

Dear Emma

It's some years since my husband first saw a psychiatrist, and I can't quite remember whether we got a Social Worker and a Community Psychiatric Nurse allocated to us through the psych or through the GP, but I rather think it was through the psychiatrist, who works within an Elderly Mental Health Team in our area, with CPN (an NHS worker) and Social Worker (Social Services) working within the same team, which seems sensible and effective.

You and your mum should ask the psychiatrist for visits from both of these people to be arranged, and if he fobs it off on the GP, you know where you are.

Because my husband was very young when he first showed signs, and his symptoms weren't entirely typical of AD at first, the local team couldn't give a diagnosis, so I asked our GP for a referral to the National Hospital for Neurology in London, where a lot of research was going on into early onset dementia. Over a period of three years he saw the Consultant and was admitted on several occasions and had extensive cognitive tests, several scans, lumbar punctures and other tests during that time. This extensive investigation was because of his age and untypical presentation, so I wouldn't expect your gran to have to go through all of this, but a brain scan might well identify changes that would help with a diagnosis if they are in any doubt from the MME and cognitive tests.

I was always involved in discussions and was asked many questions about my husband's symptoms - they were very open about everything that was going on and what they were thinking, and I was grateful for that.

Results of all tests including the mini-mental exam (MME) score were immediately given to me, and I requested copies of all letters sent to the GP about my husband (and I got them).

As your mum is the primary carer I would assume from my own experience that it is necessary to tell her what the results and conclusions are, as she is responsible for your gran's care and needs to know. However, the psychiatrist may have to ask your gran if she is willing to give permission for your mum to be told this information, and this could be a problem if she refuses or denies there is anything wrong with her.

I hope that this appointment gives some answers for you and your mum. Tell your mum not to let the doctors intimidate her - they are only human beings, after all, and if you don't ask the questions you may not get any answers. Your mum should ask about the possibility of your gran being prescribed Aricept or one of the other Alzheimer's drugs - if they don't think it is suitable, they will have to explain why not.

Good luck!

Ruthie xx

 

[Izzy]

Hi there - my husband's GP referred him very quickly to the memory clinic at the local hospital. He had one or two visits there where he saw two psychiatrists and a staff nurse who worked with the memory clinic. He also went for a scan and then we were asked back to the clinic where we got the diagnosis. I was present at all of the appointments and was interviewed as well. Once he had the diagnosis he was then given an appointment at the local hospital for the elderly and leading up to this he had a visit from a CPN. He was prescripted Aricept at the local hospital clinic and he now visits there every 6 months to get the usual memory tests and another prescription. He has also, on and off, had visits from the CPN because he was getting quite depressed after the initial diagnosis. He was then referred back to Ninewells (the big hospital) and had several visits to the Psychatrist because of his depression. These stopped some time ago as he became less depressed. At our visit to the local hospital in September he was given a prescription for something called Cipralex as he was feeling a bit down. He now takes this every day. It has made a great difference to his mood - and consequently to mine! He is not very advanced with AD and I think Aricept and this Cipralex seem to be making a big difference. My only concern is that I get no feedback from the CPN visits as he comes when I am at work - my husband has forgotten what they talked about by the time I get home! This isn't bothering me too much at the moment but I intend to raise it at our next visit.

Although we have been given a lot of support automatically I still feel that you need to be alert and ask for what you want - that isn't always easy when you're so emotionally involved.

Cheers
Izzy

 

[emscub]

Thanks again for all your advice, I'll be printing it out and showing it to Mum so that (hopefully) she can be more assertive when seeing the psychiatrist, which might mean making more headway this time around!!

Just to have some recognition that there is a problem would be a very good start.

Don't know what I'd do if I without this site (probably wait around another eight years trying to get help!).

XX