Hello everyone. I wondered if anyone can help me. My Mum seems to have got alot worse over the past few weeks, lost weight, lost interest in things, wont wash, can hardly walk as legs seem to be giving up, gone off food, most things really. Over the past year apart from S Servs coming once we have had no interest from Health Care, Doctor, nobody it is as though they have forgot mum. Surely she should be seen on a regular basis by a nurse or someone to check her medication is still OK (Aricept) she has been on that for 3 years. To be honest her speech and memory are nearly non existent I often wonder if the drug is helping now and should she still be on it. Her last memory test over 14 months ago was 11 out of about 30. I have tried ringint the local mental health people but who mum first saw and they just said see her own doctor and get re-referred. Is this what usually happens. Any help would be appreciated or should I just speak to her doctor.
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Hello, Poppit,
I'm sorry to hear your mum has deteriorated so much.
Others may come along with better advice, but I can tell you that since my husband was prescribed Aricept by the Consultant in 2003 he has been seen by the 'Memory Nurse' (proper title Assistant Practitioner and Care Co-ordinator) every six months. At this visit he has the MMSE test, blood pressure checked, and she enquires about everything else generally, so we feel his condition is well monitored.
Could it be possible that your mum may have 'discharged' herself from the service at some point without you being made aware of this?
I would question why she would need to be re-referred.
Hope you get some help, anyway,
sleepless
I'm sorry to hear your mum has deteriorated so much.
Others may come along with better advice, but I can tell you that since my husband was prescribed Aricept by the Consultant in 2003 he has been seen by the 'Memory Nurse' (proper title Assistant Practitioner and Care Co-ordinator) every six months. At this visit he has the MMSE test, blood pressure checked, and she enquires about everything else generally, so we feel his condition is well monitored.
Could it be possible that your mum may have 'discharged' herself from the service at some point without you being made aware of this?
I would question why she would need to be re-referred.
Hope you get some help, anyway,
sleepless
Hi sleepless. thanks for quick reply. No mum did not discharge herself as I went to every appointment with her I think it was other way round specialist discharged her. specialist rang me up just before last xmas and said she did not think there was anything else she could do to help mum and we have never heard from them since, apart from when I tried to ring them and get some advice. I thought it was strange at the time. I think I will have to get in touch with mums doctor because it would be nice to have at least a nurse or someone to keep track and let us know what should be done next. They are the professionals but I feel like mum has just been forgotton about.
Hiya
Hiya poppit, i tend to agree with sleepless, please ask why she would need to be re-refferred, hope you can get a satisfactory answer, lots of love, Norrms and family xxxxxxxxxx
Hiya poppit, i tend to agree with sleepless, please ask why she would need to be re-refferred, hope you can get a satisfactory answer, lots of love, Norrms and family xxxxxxxxxx
Hello poppit,
I feel so angry that people who need help are just left to get on with it. I dread to think what would happen to some of the Dementia suffers out there if they hadn't got family to fight for them. Looks like you are going to have to fight to get the care and attention she needs. I would start with her GP.
I wish you all the best..
I feel so angry that people who need help are just left to get on with it. I dread to think what would happen to some of the Dementia suffers out there if they hadn't got family to fight for them. Looks like you are going to have to fight to get the care and attention she needs. I would start with her GP.
I wish you all the best..
Quote 'I dread to think what would happen to some of the Dementia suffers out there if they hadn't got family to fight for them.'
I go cold thinking about this.
I go cold thinking about this.
You are so right, we are just abandoned and suddenly have to become experts in caring for someone with dementia without any medical training.
My mum used to see the psycho-geriatrician every 6 months, for a general review and MMSE test - TBH though it was really just a tick-box exercise to keep her on the Aricept. Last time we went she told us that the new guidelines means she only has to be seen annually (I dont know if these are general guidelines or our particular local authority).
On top of that our GP or one of the nurses does an annual assessment of all their Alzheimers patients, but that is a new initiative they have just introduced.
Whatever the rights or wrongs, the best thing will be to see your GP and get her referred again, but apart from prescribing I doubt you will get much more out of them.
My mum used to see the psycho-geriatrician every 6 months, for a general review and MMSE test - TBH though it was really just a tick-box exercise to keep her on the Aricept. Last time we went she told us that the new guidelines means she only has to be seen annually (I dont know if these are general guidelines or our particular local authority).
On top of that our GP or one of the nurses does an annual assessment of all their Alzheimers patients, but that is a new initiative they have just introduced.
Whatever the rights or wrongs, the best thing will be to see your GP and get her referred again, but apart from prescribing I doubt you will get much more out of them.
Dear Poppit,
I could have written your post myself. Apart from the 6 monthly memory clinic visit to do the MMSE test and prescribe Aricept, we were pretty much left alone.
Fortunately, mum had some money so I was able to source carers to come in, meals on wheels etc while I did everything else. I think from reading other posts that you really need to jump up and down and make a lot of noise before you receive the help you need.
Sadly my mother continued to deteriorate and is now in a care home. Thankfully she is still self-funding so we were not at the mercy of SS to find somewhere for her.
I worry for all those who are not financially secure and are just left to rot by a system that appears to be falling apart at the seams.
I am so sorry to hear of the deterioration of your Mum because I know how tough it gets.
Good luck and keep fighting.
Love,
Jeanne
I could have written your post myself. Apart from the 6 monthly memory clinic visit to do the MMSE test and prescribe Aricept, we were pretty much left alone.
Fortunately, mum had some money so I was able to source carers to come in, meals on wheels etc while I did everything else. I think from reading other posts that you really need to jump up and down and make a lot of noise before you receive the help you need.
Sadly my mother continued to deteriorate and is now in a care home. Thankfully she is still self-funding so we were not at the mercy of SS to find somewhere for her.
I worry for all those who are not financially secure and are just left to rot by a system that appears to be falling apart at the seams.
I am so sorry to hear of the deterioration of your Mum because I know how tough it gets.
Good luck and keep fighting.
Love,
Jeanne
Hi,
We also have been told that my mother has to be referred to the memory clinic, to be honest I do not know if it is worth the hassle, she is on Aricept 10mg plus other tablets for other ailments but although very confused and forgetful and living in the past she is happy enough. I have the advantage that she is in 24 hour sheltered housing so know that she is safe, especially as she is not a wanderer.
We also have been told that my mother has to be referred to the memory clinic, to be honest I do not know if it is worth the hassle, she is on Aricept 10mg plus other tablets for other ailments but although very confused and forgetful and living in the past she is happy enough. I have the advantage that she is in 24 hour sheltered housing so know that she is safe, especially as she is not a wanderer.
Thank you everyone for your responses, helps such alot. I do worry what will happen to Mum if it gets to the point where me and my sister cant look after her, we do have carers going in 3 times a day but just to give her meds and warm up meals. Mum does not have much money, on benefit etc and would hate to think of her just put in any home, although the S Servs have said they will keep her at home until she is unsafe to be there. What do you call unsafe though, last week I left her for 1/2 hour and when I got back she had gone to front door and stopped a strange man in street and asked him into her bedroom to check her light, bulb had blown. She was lucky he was a decent chap and just walked back out but anything could have happened. tried to explain to mum the danger but she just does not understand.
My mother was very quickly seen by the Memory Clinic people after she had phoned the police alleging that she had been locked in her house (by my father who has been dead for 10 years). Their immediate assessment was that she was just fine, had scored well on the MMSE but failed to spot the hallucinations and the confabulations. A few weeks later, after the police had been called out again (stealing from her this time) I called the memory clinic and they were not interested. They said she had been taken off the books and that I should talk to her GP and he can re-refer her and they will visit her again. I am not sure therefore what the purpose of these visits are if nothing comes from them.
One thing which I have found exceedingly useful is to write to the GP (copy to the Memory Clinic) with details of concerns/observation - just trying to be helpful of course to make sure anyone attending my mother will have up to date information
. They do therefore ignore it at their peril too!
Fiona
One thing which I have found exceedingly useful is to write to the GP (copy to the Memory Clinic) with details of concerns/observation - just trying to be helpful of course to make sure anyone attending my mother will have up to date information
. They do therefore ignore it at their peril too! Fiona
Dear Poppit, I can sympathise completely with your post. Do you know if your mum's file has been closed. We discovered that FIL's had, but only after we asked lots of questions. We wrote to express concern at this and he did then have his first appointment with a consultant but nothing was done. We understand that nothing can be done, although he had never been given a diagnosis or medication.
This week we called an emergency meeting with our SW who invited the CPN to come along. I had typed out a list of points to raise and an update on FIL. The CPN read it but she only spoke to him to say goodbye and she woke him to do that.
We have given up on a diagnosis now, we know it won't make any difference but we are concerned that he gets the right care. Today he can barely walk, certainly not unaided, and is having hallucinations. He is chattering away to himself, us, imaginary people but we can only understand very little of what he is saying. His appetite has fallen away and he has lost weight.
Our GP has been brilliant and FIL will be taken in our local hospital when a bed is available for a full assessment but who knows when that will be.
I don't know how old your mother is, but my own opinion is that FIL has not recieved good service because of his age. And it makes me very angry indeed.
This week we called an emergency meeting with our SW who invited the CPN to come along. I had typed out a list of points to raise and an update on FIL. The CPN read it but she only spoke to him to say goodbye and she woke him to do that.
We have given up on a diagnosis now, we know it won't make any difference but we are concerned that he gets the right care. Today he can barely walk, certainly not unaided, and is having hallucinations. He is chattering away to himself, us, imaginary people but we can only understand very little of what he is saying. His appetite has fallen away and he has lost weight.
Our GP has been brilliant and FIL will be taken in our local hospital when a bed is available for a full assessment but who knows when that will be.
I don't know how old your mother is, but my own opinion is that FIL has not recieved good service because of his age. And it makes me very angry indeed.
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