Hi everyone I am new to this forum. Have just recently had it confirmed by my mother's GP that she has Alzheimer's. Confirmation came from a scan. I have been thinking mum was having problems for a while but couldn't be sure as often she seems pretty ok. She has been staying with me for a while and so I see her all the time and now realise extent of problem. I thought it was just short term memory loss. Quite often during this last two weeks she hasn't known who I am, referring to me later as "that woman who was here", sometimes fixing me with a steely gaze and asking me what I am doing in "her" house, (she is staying with me). Two days ago she had a long conversation with me as if I were my dad but later she said "I enjoyed talking to your dad" to me as if I were someone else again. Most upsettingly of all she has accused me of taking her stuff, money and ornaments. I am beside myself with grief as all I have tried to do is help her and never touched or taken any of her things. I realise that it is the illness but am so sad to think that she does not, in the recesses of her mind, trust me. This all seems to have happened so quickly without warning. The memory clinic she has been to signed her off until next year and said she was fine. Would not give her Aricept cos she wasn't "ill enough". sorry this is so much of a ramble for a first post. Just had to get some things off my chest. Thanks for listening. Ellayne.
So sad
- Thread starter Ellayne
- Start date
Hello Ellayne
Welcome to Talking Point. I am sorry to read about your mum and I hope that this site will be a source of information and support to you.
I have no experience of medication but I would have thought that Aricept was prescribed to prevent people from getting too ill too quickly! I think you might be able to question this decision.
Sending you very best wishes Ellayne and will see you around the site.
Love
Welcome to Talking Point. I am sorry to read about your mum and I hope that this site will be a source of information and support to you.
I have no experience of medication but I would have thought that Aricept was prescribed to prevent people from getting too ill too quickly! I think you might be able to question this decision.
Sending you very best wishes Ellayne and will see you around the site.
Love
Thank you
Hi Helen
Thanks for your reply and kind words. Yes, I spoke to the people at the Memory Clinic to ask them to review this decision and maybe mum can be prescribed Aricept so that is hopeful. I don't really understand but seems there are "strict" guidelines for the prescribing of Aricept but also confusion about who the medication is likely to benefit, that is, is it someone with early signs or more advanced which is what they told us when we met the doctor last time. Thanks for taking the time to help me.
All the best.Ellayne
Hi Helen
Thanks for your reply and kind words. Yes, I spoke to the people at the Memory Clinic to ask them to review this decision and maybe mum can be prescribed Aricept so that is hopeful. I don't really understand but seems there are "strict" guidelines for the prescribing of Aricept but also confusion about who the medication is likely to benefit, that is, is it someone with early signs or more advanced which is what they told us when we met the doctor last time. Thanks for taking the time to help me.
All the best.Ellayne
Hi Ellayne,
Welcome to TP. If it helps I found the time just after my dad's diagnosis one of the worst times. There will be difficult times ahead, but there are still some good times ahead too.
On the question of prescribing, has your mum had an MMSE (mini-mental state examination)? She would have been asked questions such as her name, what the date was, to name 3 items beginning with 'P', to draw a picture of a clock etc. It is usually the outcome of that test that determines whether she is eligible for medication. The usual criteria is a score of over 20 out of 30 means under the NICE guidelines she cannot be prescribed Aricept or other AD medications.
This fact sheet may be of help.
http://www.alzheimers.org.uk/factsheet/407
Welcome to TP. If it helps I found the time just after my dad's diagnosis one of the worst times. There will be difficult times ahead, but there are still some good times ahead too.
On the question of prescribing, has your mum had an MMSE (mini-mental state examination)? She would have been asked questions such as her name, what the date was, to name 3 items beginning with 'P', to draw a picture of a clock etc. It is usually the outcome of that test that determines whether she is eligible for medication. The usual criteria is a score of over 20 out of 30 means under the NICE guidelines she cannot be prescribed Aricept or other AD medications.
This fact sheet may be of help.
http://www.alzheimers.org.uk/factsheet/407
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Hello Ellayne
Re. the comment about your Mum "not being ill enough", I think they will have been referring to the N.I.C.E. decision that a person with Alzheimer's has to have reached the 'moderate' stage of the disease (of early/moderate/advanced) before the princely sum of £2.50 per day can be spent on them.
Aricept does not reverse memory loss, but it can slow down the deterioration significantly (in a person who has no adverse reaction to it).
To my simple little mind
, it makes sense to achieve that at the earliest possible time after diagnosis and not wait until Moderate is declared,
by which time the person may quite probably be incapable of looking after themselves or living a fulfilling life without a large amount of attendance.
Ooops, I was nearly on a Rant there, wasn't I! Good job I didn't REALLY get started!!
Sorry Ellayne, back to you & your Mum.
From what you have told us, your Mum is still at a relatively early stage so if you can get Aricept (or a dementia medication which suits her) that will be good.
Hopefully she will still be able to enjoy good times with her family, doing things she likes to do.
There is no set time-scale for the disease, so you may yet have many more happy days
- make the most of them, take photos, keep a diary, make sure she feels loved & cherished.
Best wishes
Re. the comment about your Mum "not being ill enough", I think they will have been referring to the N.I.C.E. decision that a person with Alzheimer's has to have reached the 'moderate' stage of the disease (of early/moderate/advanced) before the princely sum of £2.50 per day can be spent on them.
Aricept does not reverse memory loss, but it can slow down the deterioration significantly (in a person who has no adverse reaction to it).
To my simple little mind
, it makes sense to achieve that at the earliest possible time after diagnosis and not wait until Moderate is declared, by which time the person may quite probably be incapable of looking after themselves or living a fulfilling life without a large amount of attendance.
Ooops, I was nearly on a Rant there, wasn't I! Good job I didn't REALLY get started!! Sorry Ellayne, back to you & your Mum.
From what you have told us, your Mum is still at a relatively early stage so if you can get Aricept (or a dementia medication which suits her) that will be good.
Hopefully she will still be able to enjoy good times with her family, doing things she likes to do.
There is no set time-scale for the disease, so you may yet have many more happy days
- make the most of them, take photos, keep a diary, make sure she feels loved & cherished.
Best wishes
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Tests
Hi Sue
Thanks for yours. Yes, mum had one of those tests you mention about 3 months ago. She scored quite highly though had difficulty with the three things to remember after 2 minutes. I think she got quite a high score so perhaps, as you say, that is why she does not qualify for the medication. If it helps to hold up the progress of the illness then that must be a good thing. Is it still at the experimental stage then?
You look so happy with your dad...I am glad you are finding good and happy times. Just reading round this TP and encountering all you courageous people out there makes me feel very humbled and in awe. I don't feel very brave at the moment.....just frightened and sad. Mum and I have never had a good relationship but I have always tried to do my best for her in spite of everything and especially since my dad died. My sisters and brother have just abandoned her really. I have been foolishly hoping that in time we would become close but this illness has just brought out more negativity. Ellayne
Hi Sue
Thanks for yours. Yes, mum had one of those tests you mention about 3 months ago. She scored quite highly though had difficulty with the three things to remember after 2 minutes. I think she got quite a high score so perhaps, as you say, that is why she does not qualify for the medication. If it helps to hold up the progress of the illness then that must be a good thing. Is it still at the experimental stage then?
You look so happy with your dad...I am glad you are finding good and happy times. Just reading round this TP and encountering all you courageous people out there makes me feel very humbled and in awe. I don't feel very brave at the moment.....just frightened and sad. Mum and I have never had a good relationship but I have always tried to do my best for her in spite of everything and especially since my dad died. My sisters and brother have just abandoned her really. I have been foolishly hoping that in time we would become close but this illness has just brought out more negativity. Ellayne
Thanks
Hi Lynne
Thank you for your reply. I am hoping mum can get some medication.I know it is not the cure but maybe can buy some time for her. She is frightened of being ill as has been so lucky all her life to be really healthy. The idea of something being wrong is so hard for her to grasp and she resists being helped as I think it makes her feel out of control. And it is scary. she is aware of memory loss but not of times when she hallucinates and doesn't know me or my children though she will remember that she has had these conversations with another imaginary person..though not the content. I know there will be worse ahead....thank you for sharing your experience and wisdom gained through such great personal loss. Ellayne
Hi Lynne
Thank you for your reply. I am hoping mum can get some medication.I know it is not the cure but maybe can buy some time for her. She is frightened of being ill as has been so lucky all her life to be really healthy. The idea of something being wrong is so hard for her to grasp and she resists being helped as I think it makes her feel out of control. And it is scary. she is aware of memory loss but not of times when she hallucinates and doesn't know me or my children though she will remember that she has had these conversations with another imaginary person..though not the content. I know there will be worse ahead....thank you for sharing your experience and wisdom gained through such great personal loss. Ellayne
welcome
Dear Ellayne,
Just to say welcome to the site, I joined not too long ago and I have found it to be invaluable.
The people here can all relate to you in a way that others without experience of dementia cannot ,I just wish I had found TP earlier.
As to the memory tests , David , my husband scored quite well in the last one he had, to my utter amazement , as our EMI nurse says that he is in an advanced state of the disease [ vascular d]
So these tests are not always representative of the facts!
At least you are not alone now you have joined TP, it's a marvellous forum.
Love xx
Dear Ellayne,
Just to say welcome to the site, I joined not too long ago and I have found it to be invaluable.
The people here can all relate to you in a way that others without experience of dementia cannot ,I just wish I had found TP earlier.
As to the memory tests , David , my husband scored quite well in the last one he had, to my utter amazement , as our EMI nurse says that he is in an advanced state of the disease [ vascular d]
So these tests are not always representative of the facts!
At least you are not alone now you have joined TP, it's a marvellous forum.
Love xx
No. I'm afraid it's all to do with pounds shillings and pence.
(Not so) NICE thinks that it's cost effective not to give it to sufferers in the early stages to slow down the progression of the disease. They think it's much better to let them get to the moderate stage quicker, when they will need all other sorts of care, both from their carers and paid for by the state. Oh dear, like Lynne I'm in danger of going on a rant! I'm sorry you and your mum are not close, and that your siblings have left you to get on with it. You will find many people here in the same boat on both scores.
Hi Ellayne
The memory test should only be one factor, that should be considered. I think you need list all the problems that your Mum is having and take it with you when you get a review at the memory clinic so they get a full picture of what is happening. From experience with my own Mum when presented with a doctor or professional for some reason she can present better than she actually is most of the time. As her carer they should take into account your side/concerns to what is happening with your Mum. Get some help from the Local Alzheimers society as they are very good with advice.
I hope you get some help with meds soon.
Take care
Lanie
The memory test should only be one factor, that should be considered. I think you need list all the problems that your Mum is having and take it with you when you get a review at the memory clinic so they get a full picture of what is happening. From experience with my own Mum when presented with a doctor or professional for some reason she can present better than she actually is most of the time. As her carer they should take into account your side/concerns to what is happening with your Mum. Get some help from the Local Alzheimers society as they are very good with advice.
I hope you get some help with meds soon.
Take care
Lanie
Aricept
Ellayne.
With the Nice ruling there is a catch 22 in that it can be prescribed at anytime if it is beleaved that it will improve the
patients wellbeing.You just need to get the doctor on your side.
Best wishes to you,John.
Ellayne.
With the Nice ruling there is a catch 22 in that it can be prescribed at anytime if it is beleaved that it will improve the
patients wellbeing.You just need to get the doctor on your side.
Best wishes to you,John.
Medication
Hi everyone
Thanks for those replies. Yes, I am so glad I joined. Feel so much better for being able to read what you all say and are going through so I know I am not alone. On the medication issue seems like the decision to get it prescribed is so randomised. Memory clinic was worried also about mum remembering to take it and does not have a carer at present which I suppose is a point. I am too far away to be of much use with that aspect now that she has gone back home. I took her yesterday.
One of my sisters is making lot of trouble for me saying I have just taken my mum home without organising care for her and saying that I will be responsible if anything happens to mum while she is alone at home without help. This sister lives closer to mum than I do and has never done anything to help her,even now. I am really anxious and worried cos I only took mum back because she wanted to be in her own home and doctor said it was ok cos she still able to make that decision.
Think my sister wants to avoid having to do anything for mum and pushing it and guilt back on to me. I begged mum to stay with me but she wanted to go home to be with her own things. I will have to organise someone to go in, I think, just maybe to check and maybe cook something for her. She is pretty good at doing stuff for herself anyway. It is terrible when your family don't all pull together and awful for mum too. I am trying to be brave as you all are. I know I am not only one so that is something. Thanks everyone. Ellayne
Hi everyone
Thanks for those replies. Yes, I am so glad I joined. Feel so much better for being able to read what you all say and are going through so I know I am not alone. On the medication issue seems like the decision to get it prescribed is so randomised. Memory clinic was worried also about mum remembering to take it and does not have a carer at present which I suppose is a point. I am too far away to be of much use with that aspect now that she has gone back home. I took her yesterday.
One of my sisters is making lot of trouble for me saying I have just taken my mum home without organising care for her and saying that I will be responsible if anything happens to mum while she is alone at home without help. This sister lives closer to mum than I do and has never done anything to help her,even now. I am really anxious and worried cos I only took mum back because she wanted to be in her own home and doctor said it was ok cos she still able to make that decision.
Think my sister wants to avoid having to do anything for mum and pushing it and guilt back on to me. I begged mum to stay with me but she wanted to go home to be with her own things. I will have to organise someone to go in, I think, just maybe to check and maybe cook something for her. She is pretty good at doing stuff for herself anyway. It is terrible when your family don't all pull together and awful for mum too. I am trying to be brave as you all are. I know I am not only one so that is something. Thanks everyone. Ellayne
Dear Ellayne
There are people on here far more experienced than me. My mum scored well on 3 memory tests, but none of them identified that she was standing at the local bus stop at 2 a.m. waiting for a non-existent bus. Memory tests are only one tool in the psychiatrists pack, and useless in mum's case.
I can't help really with sisters, I have no siblings, neither does my husband. There are pros and cons with this. On the one hand there was only me to provide care and make decisions, on the other hand I didn't have to argue with anyone. It would be wonderful if we all had a good sister or brother to help out, but it doesn't always work like that. I would say to you, do your best, you can only ever do your best. Inform your sister on what you are planning and ask if she has a better idea that SHE would like to investigate (by tomorrow), but otherwise do what you have planned.
Suggest to your sister that if she wishes to arrange alternative care you would be really pleased to learn about it. Sounds a bit sarcastic but hope you get the idea.
Perhaps I should suggest that you sisters get together and discuss options. Perhaps one of you can investigate a care home, one care in the community, one something else, and bring it all together at a family conference. But please feel free to ignore me cos I had no-one to help or argue with, so made my own decisions, which I think turned out okay.
Whatever happens, ditch the guilt. Of course mum wants to be in her own home. You have judged and been advised that she is safe to be there, so that is fine. It might prove wrong, but you can only run with the information you have at present.
We found Aricept helped mum, but others don't find the same.
Hope you find an acceptable way forward.
Much love
Margaret
There are people on here far more experienced than me. My mum scored well on 3 memory tests, but none of them identified that she was standing at the local bus stop at 2 a.m. waiting for a non-existent bus. Memory tests are only one tool in the psychiatrists pack, and useless in mum's case.
I can't help really with sisters, I have no siblings, neither does my husband. There are pros and cons with this. On the one hand there was only me to provide care and make decisions, on the other hand I didn't have to argue with anyone. It would be wonderful if we all had a good sister or brother to help out, but it doesn't always work like that. I would say to you, do your best, you can only ever do your best. Inform your sister on what you are planning and ask if she has a better idea that SHE would like to investigate (by tomorrow), but otherwise do what you have planned.
Suggest to your sister that if she wishes to arrange alternative care you would be really pleased to learn about it. Sounds a bit sarcastic but hope you get the idea.
Perhaps I should suggest that you sisters get together and discuss options. Perhaps one of you can investigate a care home, one care in the community, one something else, and bring it all together at a family conference. But please feel free to ignore me cos I had no-one to help or argue with, so made my own decisions, which I think turned out okay.
Whatever happens, ditch the guilt. Of course mum wants to be in her own home. You have judged and been advised that she is safe to be there, so that is fine. It might prove wrong, but you can only run with the information you have at present.
We found Aricept helped mum, but others don't find the same.
Hope you find an acceptable way forward.
Much love
Margaret
