Page last updated at 22:18 GMT, Friday, 1 August 2008 23:18 UK

The Long Goodbye: Your Comments

In the past week, World News America and the BBC News website have been showcasing a four-part series on Alzheimer's called 'The Long Goodbye'

Hundreds of people have responded, sharing their experiences living with family members with the disease and relating stories of sadness and hope.

Alzheimer's disease is a progressive, degenerative and irreversible brain disorder that causes intellectual impairment, disorientation and eventually death.

There is no cure. It is estimated that 2-5% of people over 65 years of age and up to 20% of those over 85 years of age suffer from the disease.

The discovery of a new drug to treat Alzheimer's disease has recently been in the news.

The drug, Rember, has been twice as effective as current treatments and restored parts of the brain to life.

BBC News website viewers respond to 'The Long Goodbye'
My father has Alzheimer's. He was always physically active. An electrician by trade he did home improvement projects in his spare time. Now he can not remember how to use the riding lawn mower, or any of his power tools. He can not do any of the activities that he took for granted - putting up Christmas decorations, driving a car, not even gardening.

He is no longer self directed. He is constantly in motion - out one door of the house, walk around the property, in another door of the house and repeat. Over and over... Some days he has lucid moment where he will say "I don't know what is happening to me. Sometimes I don't even know who I am." It is heartbreaking. He hasn't called any of us children by name in three years.
Leah Davis, Orlando, Florida, USA

I have recently been diagnosed with Alzheimer's and have some memory loss and confusion. I have lost all enthusiasm for hobbies and day to day housekeeping. My doctor has told me to come back in October and to date has not given me anything in the way of medication. I am not afraid as much as I am sad, knowing what's ahead for me and my loved ones. I try to maintain a positive attitude, sense of humour and have a church family that is caring and understanding.
Georgia Ricketts, Woodruff, South Carolina, USA

My wife, at 55, was diagnosed with Alzheimer's last year, she may have had it for two or three years before this. She has gone downhill over the last year, she is not able to cook or tidy the house or remember to take her medication. All she wants to do is sit and sleep.

We have no real conversations anymore and she is unable to remember what she ate last night. When she puts things away they may end up in the fridge or cupboard or dishwasher. She is always folding towels into squares and leaving them on the worktops in kitchens. Life is very different since she was diagnosed with Alzheimer's.
Phillip Masters, Herne Bay, Kent, England, UK

My mum has Alzheimer's and it is heartbreaking. She was a school teacher, extremely intelligent and very active but she is losing all her skills now and it is so difficult to accept. My dad has multiple sclerosis so our situation is dire and very sad. Since I was four years old I have prayed for a cure for my dad which was never to be and now my mum who has spent most of her life taking care of my dad also needs a miracle cure.
Annie Brown, Inverkeithing, Fife, Scotland, UK

"The Long Goodbye" is a perfect description of the situation that Alzheimer's families go through. My father has a multitude of illnesses, including Alzheimer's. We take care of him at home and it has indeed been a long, downward spiral. Years of fighting this losing battle has taken a tremendous emotional toll on the family.

It's a shame that Alzheimer's is not treated with the same sense of urgency as cancer. Cancer eats and erodes the body. Alzheimer's eats and erodes the mind and quality of life. It is a one-way street which leads to isolation. Your family and friends become strangers. Your interests and memories are gone. You don't remember the things that once brought you great joy and would rather be left alone in your malaise.
Brian Lusardi, Philadelphia, USA

Yes, A Long Goodbye, which happens each time my sister and I leave our mum. At times I feel I see a desperate look in my mother's eyes as if she knows what is happening but is unable to express it in words. There are times when we can laugh with her. These are usually at childlike things that she does which seem to highly amuse her to where she is giggling like a small child.

I feel that those who have chosen to provide care for dementia patients are the most underpaid and underappreciated professionals except by those who have someone they love slowly dying a little bit more each time they see them.
Doug Buchanan, New Zealand

Thank you for your reports on Alzheimer's. The name on your report, The Long Goodbye, makes tears come to my eyes. My dad is 60 and has been suffering from Alzheimer's for the last five to ten years. We're not sure when it started. He lives in Colombia and there is very little support there for families.

Mum has struggled with the fact that she lost the man she fell in love with. She is living in denial and suffers with dad's lack of concentration and understanding of things that take place every day. I only wish the trial of the new medicine took less time and gave dad and mum a better chance to live happily after retirement. After all, he only hit 60 last December.
Bibiana Deacon, Hudson, Massachusetts, USA

There is no way to describe this disease unless you have experienced it first hand. The pain it brings families still having their loved one in front of them but being mentally gone. Then a ray of hope pokes through, a word, a smile or a squeeze of the hand. These rays flood your mind with questions: do they know I'm here, do they know where they are in this moment, or what they are doing, or is it just their brain responding by chance? I pray you never have to experience this.
Nicole Cornelis, London, Ontario, Canada

My mother-in-law has Alzheimer's. In the early 1900s her mother and two sisters married three brothers. One family, ours, had seven kids, one of her other sisters had five kids and her other sister had none. They all lived side by side in northern Michigan and were basically raised as one family. The family of seven all had Alzheimer's and none of the rest did. We still don't know how this will affect my husband or his siblings.
Irene Gierzak, Muskegon, USA

I too watched my mother in her long goodbye. It took two years and three months from the stroke which left her with worsening dementia. As an only child with deteriorating health I had no option but to place her in a nursing home. Fortunately it was close to my home and I was able to call in and see her regularly, but each time I noticed a change until she was no more than a shell, needing to be fed, dressed and washed; able to do nothing for herself at all.

She died in February this year and, like your experience, I too shed tears and then was relieved to think she was beyond her pain and suffering. As I type this I am choked up again as I remember those visits to the nursing home, holding on to the brief moments of recognition and then seeing the fog come over her eyes. In the end she even lost her beautiful smile. Her face was a blank canvas - she who had done so much and been so active during her early years.
Ann Sykes, Newport, South Wales, UK

I can relate to this story as I lost my paternal grandmother in January to Alzheimer's after a period of seven years in a nursing home. She had been a very cheerful and fun loving person but gradually slipped away from us over a period of time and for the last three to four years of her life she was in a world of her own where she knew no one.

My mother has also been diagnosed with this disease and is thankfully in the early stages but I dread to think what is ahead over the coming years. I just hope she doesn't linger on like my grandmother did as it will be hard to bear it when your own mother doesn't know you.
M Morrow, Craigavon, Northern Ireland, UK

The Long Goodbye: Part 1
29 Jul 08 |  Health
The Long Goodbye: Part 2
30 Jul 08 |  Americas
The Long Goodbye: Part 3
30 Jul 08 |  Health
The Long Goodbye: Part 4
31 Jul 08 |  Health

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