General Chat

I just read a newspaper today and the goverment has u-turned on the dementia and they are not taking the tablets off the market I hope they do over turn it

Nudge

We dont have long for this, so please, if you have not already done so......email your support. Deanna

nudge

Using this as an excuse for a blatant nudge! Christine, you will get through this, believe me. I never ever could have imagined I would have survived my Mam's illness but I did. It wore me out, wore me down, made me ill, and I cried, screamed and raged at this sickening disease but--I survived! I am stronger now than I could ever have been otherwise, and much more compassionate. I've shed many tears over this, especially as it was the anniversary of Mam's death and Mothers Day only last week, but I am convinced that we can all make a difference! As you say, the one comfort in this is that the sufferer seems, most of the time, to be oblivious to their condition. Though it can cause severe depression and anxiety in some. On behalf of Linda, please can i ask everyone to keep this thread 'upfront'? The decision will be made on the 22nd which is only a few days away. Be nice if we could grab a few more people before then! Many many thanks, Sal.X

Dear Sand Dancer, THank you so much for your kind message. I felt slightly tearful. I hate to think of all your stresses and strains. It is a terrible condition. Sometimes i don't think the sufferer is really aware of their illness but their family certainly is! My mum has a lovely Alzheimers nurse who visits her every three weeks and checks to see if my dad is coping. Her assessment has been postponed because her specialist doctor has ben called away but if this thread is still running I will update. Love and best wishes to you. To everyone else, you can see from notes on this thread how important it is to keep patients on their drugs to give them a better quality of life for longer and to keep them with their family. PLEASE fill in the comments on the NICE website. XX CHristine THank you

Hi Christine, Many thanks for that. I do feel for you. I wouldn't wish this terrible disease on anyone. I have been haunted by memories since this issue came back up. Those assessments are awful--I can remember how sick I used to feel sitting with Mam, willing her to get the answers right so that she could stay on aricept. I remember one particularly nasty doctor who made Mam feel two inches tall because she couldn't tell her what season it was. Once Mam went into care, the assessments often had several staff there. At one, a nurse, in front of a room of ten strangers, told me and my Dad in graphic detail how my Mam had lost bowel control. I do wish you and your Mum the very best. Apart from a few horrid experiences my Mam had excellent care, especially when she went into a nursing home. I will always be grateful to her consultant for his kindness and patience. I only hope you get as much help. Will you let me know how the assessment goes? Sal.x

Dear Sand Dancer, Just to say how sorry I was about your mam. You may have seen from my notes on this thread that my mum has Alzheimers. Her score is slipping and she is to be re assessed soon, this fills me with horror as I know if they take her off of Aricept she will just slip into some other world. Only those who have experienced alzeimers in someone they know can realise how bad it is and how distressing for the family. You have been there and done that, no doubt shed lots of tears. Thank you for sharing your story, the more people that speak out and say how necessary these drugs are, the more help there will be for present and future sufferers. We have got to make NICE and the government listen. Love Christine

Linda, Just filled in the form at NICE. Can I just say for anyone unsure of whether to comment to NICE, it is very simple. They let you comment as you go along, so you can read the info them comment on it before moving on to the next bit. I did not fill in all of the boxes as not all were relevant to my experience, and you do not have to say too much (though there is plenty of space if you need it). Be sure to check your comments as they request as they won't let you submit til you do. I lost the page twice during this process but got it back by clicking 'back'. I feel very grateful to all of you who have not experienced dementia first-hand yet have still responded to this issue. Many many thanks. We have already shown how strong people power can be--let's keep it up! Sal.X

nudge

Linda, You are amazing! i am so pleased someone has raised this on here, especially presenting all the facts as you have. Thank you! My lovely Mam was destroyed by Alzheimers. By the time we got aricept she was unable to speak to strangers (which included us--her own children who saw her every other day) and unable to perform simple tasks. Two weeks after starting aricept 'our Mam' came back to us--she started to laugh again, would talk to strangers, could do simple tasks, and recognised her family again--a joy which cannot be expressed in monetary terms. We are convinced that aricept kept Mam out of care for at least two more years. This meant that my Dad could care for his beloved Olive at home, and the family had many more special days to treasure her before we finally had to face the worst of the disease and put her into care. Even though she was in care, her consultant defied NICE guidlines which stated that someone in Mam's condition should no longer have access to the drug (A harsh test called the Mini Mental State Exam scores the patient on basic mental tasks. A score below 12 does not qualify for aricept. Of course this test does not give points for smiles, cuddles and recognition of family members). Thanks to this wonderful doctor, who could see the benefits the drug was still having, Mam continued on aricept for a further six months. Eventually we all agreed that it wasn't helping her any longer and we stopped it. Mam died in care six months later. We are convinced that we would have lost her much sooner had she not been given such incredible care and medication. Dad and I have written to NICE, John Reid and the media telling them our story--hard, but we are desperate to make sure this drug stays available to others. I can only plead with all of you who have been fortunate enough to not have watched a family member suffer dementia to PLEASE take the time to complain to NICE. If you haven't already faced dementia, you are likely to at some stage in your life. All complaints need to be recieved by 22nd of March. Please take some time out of the time that perhaps you would spend on GR to write a letter or email NICE. Those of us who have shared our stories would be very grateful. Thank you for listening, Sal

I wrote two letters yesterday, one to nice and a copy to the Alzheimers society. Hope some of you do the same. Deanna

i emailed direct from the alzheimers site to my mp and i got a reply yesterday morning!! i didnt say much but at least they know were out here and interested kaz

Christine and Carole, thank you both for the things you said. Getting TV involved is a good idea i think. Deanna

Hi Deanna, So sorry to hear about your dad.My mum is 77 and has had Alzheimers for a while now, it is so difficult to equate the sufferer with the person they once were, my mother would be horrified to know what she is like, she still seems to think she does the cooking, cleaning etc when she can't even remember how to put a kettle on. I sometimes think she is the only happy one about this, she doesn't know there is anything wrong with her while my dad and sisters go round picking up the pieces. I had really low blood pressure until my mum got this and now it has been really high and I am on BP tablets. She and my dad are coping but without the drugs whatever would happen, it would cost the NHS more propping the family up or putting her into a home. THe short sightedness is beyond belief. Christine

nudge

Thanks Kaz, I'm going for my tea now. Try to help me keep it up. Deanna

nudge

I managed to get it Rose. It will take some reading, although I did get the gist of it. I have put it into my favs. so that I can read it at my leisure. Thanks Deanna

I will try to read that Rose. Deanna