Hello, please can anyone tell me what exactly the 'memory nurse' does. My husband was diagnosed with alzheimers late November and the consultant said he would be having Aricept or Galantamine but the 'memory team' would be in touch. We had a letter yesterday stating the nurse would be coming to our home on 21st January to assess for treatment, does anyone know what she or he will do, there has been so may tests over the last 12 months, I just wish they would get on with it and actually prescribe the medication instead of keep talking about it. I feel really frustrated and am tired of battling with beaurocracy, life is hard enough as it is. kindest regards, pussycat
memory nurse
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Dear Pussycat,
I really don`t understand this procedure. When my husband was diagosed, in 2005, the consultant wrote out a prescription then and there, and informed the GP, who issued follow up prescriptions.
Whether different authorities, Hospital Trusts or GPs have different procedures, I don`t know. Also recent changes in the NICE Guidelines may have affected the way drugs are prescribed.
I can only suggest you ask your own GP why it`s done this way and if it`s peculiar to your area.
Love xx
I really don`t understand this procedure. When my husband was diagosed, in 2005, the consultant wrote out a prescription then and there, and informed the GP, who issued follow up prescriptions.
Whether different authorities, Hospital Trusts or GPs have different procedures, I don`t know. Also recent changes in the NICE Guidelines may have affected the way drugs are prescribed.
I can only suggest you ask your own GP why it`s done this way and if it`s peculiar to your area.
Love xx
Thanks for that Grannie G, it is good to know somebody is there to listen and help. It just feels such a lonely place to be in right now, we have one very understanding daughter but she has 2 young children and I don't want to put too much burden on her, our eldest daughter buries her head in the sand when it comes to illness and won't let me talk about her father and alzheimers and our son is in Australia, he is a good listener but he feels a million miles away. I have discovered a lot of 'friends' have disappeared so thankgoodness for TP.
Dear Pussycat,
There is always someone here who will share your anxieties and fears, as we all know what it`s like.
Caring full time is one of the loneliest places to be, I think many of us have found that, especially those caring 24/7.
The trouble with medics is they move too slowly and don`t seem to realize how every day without medication is an unfair delay. Unfortunately, it didn`t help my husband at all, but it doesn`t mean it won`t help yours, when he gets it.
Take care, and don`t be afraid to make a bit of a fuss.
xx
There is always someone here who will share your anxieties and fears, as we all know what it`s like.
Caring full time is one of the loneliest places to be, I think many of us have found that, especially those caring 24/7.
The trouble with medics is they move too slowly and don`t seem to realize how every day without medication is an unfair delay. Unfortunately, it didn`t help my husband at all, but it doesn`t mean it won`t help yours, when he gets it.
Take care, and don`t be afraid to make a bit of a fuss.
xx
Hi Pussycat
Please don't feel lonely, there are several of us caring for spouses, and we know how lonely it can be. There's usually someone to talk to here.
I'm guessing that the memory nurse will give your husband the mmse test, and will pass the results to the consultant. If his score is in the 'right' range, he'll be prescribed medication. NICE in its wisdom has decreed that only people with moderate dementia can be treated. Absolute nonsense, but we have to accept it.
This is what happened with us -- we were in England when John was first diagnosed. The nurse visited the house a couple of weeks before each consultant's appointment, so he always knew the score before we went. Up here, it's a completely different system.
Love,
Please don't feel lonely, there are several of us caring for spouses, and we know how lonely it can be. There's usually someone to talk to here.
I'm guessing that the memory nurse will give your husband the mmse test, and will pass the results to the consultant. If his score is in the 'right' range, he'll be prescribed medication. NICE in its wisdom has decreed that only people with moderate dementia can be treated. Absolute nonsense, but we have to accept it.
This is what happened with us -- we were in England when John was first diagnosed. The nurse visited the house a couple of weeks before each consultant's appointment, so he always knew the score before we went. Up here, it's a completely different system.
Love,
Hi pussycat, from my experience the first home visit for my mum from the 'Memory Nurse' (CPN) involved the MMSE test, a blood pressure check, a general medical questionnaire and lots of general chat with both me and mum about how she/we were coping. All very informal - and comforting to have another 'professional' on board .... I have taken her up on her offer several times to ring if I have any questions or concerns. In my area the Memory Team includes Occupational Therapists too who can help with practical issues around the home ......
Mum's consultant had already 'suggested' Aricept - but she was required to have ECG tests before prescription (not sure that's routine but because of mum''s own health history) ... seemed it was the CPN's role to collate all test results then once satisfied, the 'authority' for the prescription was sent from the Memory Team direct to mum's GP. Don't be surprised if you asked to 'make yourself busy' while they nurse goes through the MMSE (I personally still haven't decided which has been the worst experience - watching mum struggle her way through it and fighting back the instinct to give her prompts or feeling I have abandoned her in another room while she gets anxious that someone is testing her intelligence, which it is not of course .....)
Again just from my experience of course, once Aricept had been prescribed, mum was started off on 5mg to see how she tolerated it ..... and the Memory Nurse came again for a general 'consultation' several weeks later before upping the does to the 10mg which the consultant had recommended. She has since visited, with or without an Occupational Therapist in tow, to perform MMSE and for general follow-up. My understanding is that in my partcuilar PCT the support from the Memory Nurse will cease when mum's medication does??????
I would urge you not to worry about the appointment but to see it as an opportunity to ask all the questions you need to .... and welcome it as one other source of support for both of you - your memory nurse should have a good knowledge of what support may be available locally that you may not have already uncovered for yourself .....
Love, Karen, x
Mum's consultant had already 'suggested' Aricept - but she was required to have ECG tests before prescription (not sure that's routine but because of mum''s own health history) ... seemed it was the CPN's role to collate all test results then once satisfied, the 'authority' for the prescription was sent from the Memory Team direct to mum's GP. Don't be surprised if you asked to 'make yourself busy' while they nurse goes through the MMSE (I personally still haven't decided which has been the worst experience - watching mum struggle her way through it and fighting back the instinct to give her prompts or feeling I have abandoned her in another room while she gets anxious that someone is testing her intelligence, which it is not of course .....)
Again just from my experience of course, once Aricept had been prescribed, mum was started off on 5mg to see how she tolerated it ..... and the Memory Nurse came again for a general 'consultation' several weeks later before upping the does to the 10mg which the consultant had recommended. She has since visited, with or without an Occupational Therapist in tow, to perform MMSE and for general follow-up. My understanding is that in my partcuilar PCT the support from the Memory Nurse will cease when mum's medication does??????
I would urge you not to worry about the appointment but to see it as an opportunity to ask all the questions you need to .... and welcome it as one other source of support for both of you - your memory nurse should have a good knowledge of what support may be available locally that you may not have already uncovered for yourself .....
Love, Karen, x
Hi pussycat
To say we have a National Health Service each area does seem to operate differently.
We were referred by our GP to a Consultant operating out of a local clinic in the January, and finally were prescribed the low dose Aricept in the December. We had the first consultation with the Consultant only two days after the referral, followed by a home visit by the mental nurse (or CPN) one week later.
(I never referred to the visitor being the mental nurse. Mum and I only talked about mum’s little memory loss problem).
The CPN was very friendly and, in our case, just came for a general chat. She had been sent to see mum operating in her home environment. Mum made her a cup of tea and they had a chat. The mental nurse was also able to chat to me about local Day Centres, Social Services, and things like that. She also told me what to write on the Attendance Allowance claim form. She gave me her telephone number and encouraged me to ring her if ever I had a problem. I found that I could talk to the CPN far easier than the GP or the Consultant.
In our case the CPN visited a couple of times before our next appointment with the Consultant. The Consultant then read the CPN’s report and arranged for mum to have an ECG and a brain scan. We had a couple more appointments with the Consultant before finally having the Aricept prescribed in the December. The Consultant gave us the first prescription but the follow on prescriptions always had to come from the GP’s surgery. We then had an appointment with the Consultant every three months.
In our case the MMSE (mini mental) test was always given by the Consultant and I would sit in as mum preferred me to be there. (I always found the worst part of sitting in on the MMSE was realising that I could not pass the “remember the words” test… and I was never able to do the “spell the word backwards”).
Usually mum managed to get through it without getting too aggravated but, she would always write something quite pertinent when asked to write a sentence. Something like “I don’t know why you are asking me all these silly questions” or “this has been a waste of time”, or “can I go home now”.
Don’t worry about the CPN visit. I am sure you will find the CPN is a friend on your side.
My advice, which is the opposite of what I actually did, is always to ask for help, and never ever say you are coping.
Best wishes
Clive
To say we have a National Health Service each area does seem to operate differently.
We were referred by our GP to a Consultant operating out of a local clinic in the January, and finally were prescribed the low dose Aricept in the December. We had the first consultation with the Consultant only two days after the referral, followed by a home visit by the mental nurse (or CPN) one week later.
(I never referred to the visitor being the mental nurse. Mum and I only talked about mum’s little memory loss problem).
The CPN was very friendly and, in our case, just came for a general chat. She had been sent to see mum operating in her home environment. Mum made her a cup of tea and they had a chat. The mental nurse was also able to chat to me about local Day Centres, Social Services, and things like that. She also told me what to write on the Attendance Allowance claim form. She gave me her telephone number and encouraged me to ring her if ever I had a problem. I found that I could talk to the CPN far easier than the GP or the Consultant.
In our case the CPN visited a couple of times before our next appointment with the Consultant. The Consultant then read the CPN’s report and arranged for mum to have an ECG and a brain scan. We had a couple more appointments with the Consultant before finally having the Aricept prescribed in the December. The Consultant gave us the first prescription but the follow on prescriptions always had to come from the GP’s surgery. We then had an appointment with the Consultant every three months.
In our case the MMSE (mini mental) test was always given by the Consultant and I would sit in as mum preferred me to be there. (I always found the worst part of sitting in on the MMSE was realising that I could not pass the “remember the words” test… and I was never able to do the “spell the word backwards”).
Usually mum managed to get through it without getting too aggravated but, she would always write something quite pertinent when asked to write a sentence. Something like “I don’t know why you are asking me all these silly questions” or “this has been a waste of time”, or “can I go home now”.
Don’t worry about the CPN visit. I am sure you will find the CPN is a friend on your side.
My advice, which is the opposite of what I actually did, is always to ask for help, and never ever say you are coping.
Best wishes
Clive
Hi Pussycat
Just to let you know that our "memory nurse" has been one of the loveliest most helpful people we could ever hope for. She is absolutely superb with our Mum - does all the tests with the least stress possibly and has also had the time to have long talks with us about how we're coping. Mum also loves her and dimples away at her (not sure she knows now what we're talking about but you can see she's happy)
When our Mum was in hospital and we really felt her care was awful - it was our memory nurse who started the phone calls etc that got her treated with antibiotics - she was the only person the hospital staff would listen to when we were tired of repeating "it's not JUST the Alzheimers" - its an infection.
Make friends with your memory nurse if you can - she/he can be a wonderful support
regards
Germain
Just to let you know that our "memory nurse" has been one of the loveliest most helpful people we could ever hope for. She is absolutely superb with our Mum - does all the tests with the least stress possibly and has also had the time to have long talks with us about how we're coping. Mum also loves her and dimples away at her (not sure she knows now what we're talking about but you can see she's happy)
When our Mum was in hospital and we really felt her care was awful - it was our memory nurse who started the phone calls etc that got her treated with antibiotics - she was the only person the hospital staff would listen to when we were tired of repeating "it's not JUST the Alzheimers" - its an infection.
Make friends with your memory nurse if you can - she/he can be a wonderful support
regards
Germain
Hello Pussycat-My husband was diagnosed with AD about 18 months ago. He was commenced on Reminyl just over a year ago and is now on the maximum dose. In our experience the "memory" nurse is a CPN(community psychiatric nurse) specifically linked to the memory clinic at the local hospital which we attend every 3 months. We also have a visit from the CPN or another member of the team every month/6 weeks to assess how things are. The MMSE is usually done every 3 months or so. Eric (my husband) had had his brain scan by the time we got to this point. He had to have a full set of blood tests/ECG/BP check before commencing the medication.
As others have reported the CPN is an excellent point of contact and is always willing to visit/chat-or I can go to see her alone if necessary.
It's an awful time-and makes you focus on things you normally wouldn't think about. Take it one day at a time-TP is here for us all-there's a lot to share!
Love Gigi x
As others have reported the CPN is an excellent point of contact and is always willing to visit/chat-or I can go to see her alone if necessary.
It's an awful time-and makes you focus on things you normally wouldn't think about. Take it one day at a time-TP is here for us all-there's a lot to share!
Love Gigi xhi pussycat
All i can tell you is that Dads consultant is wonderful and his staff(cpns) even more so.Through my job i have sat through the mmse so many times that if i ever develop A/Z they won't be able to diagnose it,i know all the questions and answers!jioking apart,i sat through Dads initial mmse along with mum.like i said i knew what was coming and didn't flinch an inch when Dad got questions wrong,mum couldn't take it and left the room.i cracked later when i was alone,but reflection made me see that he was able to have help and was elligible for medication.it's never easy darlin going through the process of it all,and its not easy after diagnosis,i think it's not who we are but what we are that helps us all along this terrible road.hope the visit goes well for you both and don't fret pet,theres always an ear here.
love and best wishes elainex
All i can tell you is that Dads consultant is wonderful and his staff(cpns) even more so.Through my job i have sat through the mmse so many times that if i ever develop A/Z they won't be able to diagnose it,i know all the questions and answers!jioking apart,i sat through Dads initial mmse along with mum.like i said i knew what was coming and didn't flinch an inch when Dad got questions wrong,mum couldn't take it and left the room.i cracked later when i was alone,but reflection made me see that he was able to have help and was elligible for medication.it's never easy darlin going through the process of it all,and its not easy after diagnosis,i think it's not who we are but what we are that helps us all along this terrible road.hope the visit goes well for you both and don't fret pet,theres always an ear here.
love and best wishes elainex
just a thought , the last time my mum did the test she was asked to write a sentence...
she wrote "I am happy" she scored about 18 at that point.
i watched her struggle through the test, and watched her delight when she was confident she knew the answer.
She kept looking at me for help, but I kept shrugging my shoulders, saying/thinking/conveying "mum, I cant help you this is your test, not mine"
we all praised her when she got the answer right (but not in a patronising way)
when she got it wrong, the nurse was so kind, didnt point out it was wrong, she just said "good answer" and moved on to the next question.
but it was heartbeaking to watch her struggle to draw a clock, or follow 2 step instructions. not successfully.
or spell "world" backwards
she wrote "I am happy" she scored about 18 at that point.
i watched her struggle through the test, and watched her delight when she was confident she knew the answer.
She kept looking at me for help, but I kept shrugging my shoulders, saying/thinking/conveying "mum, I cant help you this is your test, not mine"
we all praised her when she got the answer right (but not in a patronising way)
when she got it wrong, the nurse was so kind, didnt point out it was wrong, she just said "good answer" and moved on to the next question.
but it was heartbeaking to watch her struggle to draw a clock, or follow 2 step instructions. not successfully.
or spell "world" backwards