The heartbreaking long goodbye
| By David Willis BBC News in Missouri |
 Dianne struggles to communicate with her mother |
Next to her on the bed sat two of her closest relatives - her daughter and grandson.
They hugged her, teased her, squeezed her hand: nothing.
They talked of hobbies, and pets, and adventures from her past: not a word.
Then - briefly - the haunted expression grew into a smile and both planted kisses on her pallid skin.
For Dianne Kerley and her son Mike it was the best they could hope for.
Fifteen years ago Dianne's 78-year-old mother Flossie (Mike's grandmother) was diagnosed with Alzheimer's disease.
Since then she has lost not only her memory, but the ability to look after herself, as well as the ability to walk and talk.
Traumatic deterioration
They say that Alzheimer's begins with forgetting your keys and ends with you forgetting what your keys are for, but it is a whole lot worse than that.
 Flossie no longer recognises her family |
Before long Flossie's sense of balance and co-ordination will be compromised.
In the final stages of the disease so too will her ability to breathe.
Until then all Dianne and Mike can do is undertake a heartbreaking weekly pilgrimage to a nursing home in eastern Missouri and watch her fade away before their eyes.
"It was two years ago - at Thanksgiving," said Dianne, recalling the last time her mother recognised her.
"Ten or 12 seconds and then it was gone.
"She was like: 'Well hi! How are you?' and I'm like: 'Well, we sure do miss you,' and she was like: 'You do?. Then all of a sudden the fog just went over - and that was it."
It is difficult to imagine a slower, more agonising death.
Alzheimer's leaves the patient a prisoner in their own body whilst systematically eroding everything about them that makes them human.
What should be the golden years are marked by blank stares and tragically unrequited expressions of love.
My own grandmother
Flossie's situation reminded me of my grandmother.
Sprightly and independent, she was like a granny from central casting - white hair, glasses, rocking chair and slippers.
 It is very traumatic for Dianne and Mike |
She came to live with us shortly after my parents married and she was a hoot.
She helped out at children's tea parties, always had the best biscuits in the house, and allowed me to watch shows on her black and white TV that my mother frowned on.
But as the years went by, Granny started to change.
Not only would she say the same things, she would do the same things, time and time again.
She would list the names of everyone in the family before arriving at mine, come in to tell us something and then forget what she had come to say.
All the time she was becoming befuddled by tasks which once seemed second nature.
Slowly but surely her sharp mind and sense of fun began to fade like a tropical sunset.
When she lost control of her bladder my mother decided she could not cope and we put her in a home.
The first time I visited she barely recognised me.
A few more trips and she had lost the ability to speak.
Months later a nurse rang to say granny had faded away in her sleep.
We shed a tear then breathed a huge sigh of relief.
New hope
The fact is that even though Alzheimer's was discovered more than 100 years ago it is only in the last two decades that we have really come to know anything about it.
 Trials of new treatments are in progress |
Lack of funding has a lot to do with it.
The US government spends roughly eight times as much on cancer research as is does researching Alzheimer's disease, and half what it spends on substance abuse.
Finally, though, there is some hope.
This week the Irish-American company Elan and the US firm Wyeth will jointly announce they are pressing ahead with the $300m (£151m) trial of a drug which could block the production of a protein called beta amyloid which many scientists believe causes Alzheimer's.
Present in all of us, too much beta amyloid can cause plaques to form in the brain, and those plaques feast on brain cells.
There is a lot at stake, not least financially. If a drug is discovered which prevents Alzheimer's half the population of the US alone could eventually end up taking it.
Need is great
Never has the need been greater: as the first baby boomers turn 60 the fear is the heath care system could be overwhelmed by what some are predicting could be an epidemic of Alzheimer's disease.
It costs $50,000 a year just to keep Flossie in a nursing home.
Back in Missouri, Mike and Dianne are bidding her farewell: "There's that pretty smile, sleep tight OK?"
Flossie sits perfectly still - beyond hooded eyelids brain cells are dying.
As she reaches the hallway Dianne stifles a tear.
Hers is the heart-rendering tragedy of the long goodbye.
• You can watch David Willis's report on BBC World News America at at 0030 BST on BBC News and at 0000 BST (1900 ET / 1600 PT) on BBC World News and BBC America (for viewers outside the UK only).
Are you or is someone you know suffering from Alzheimer's disease? Are you affected by the issues in this story? Send us your comments using the form below.
Definition
be a hoot INFORMALto be very amusing:
He's an absolute hoot.
Definition
bladder Show phoneticsnoun [C]
a bag-like organ inside the body of a person or animal, where urine is stored before it leaves the body:
to empty your bladder (= urinate)
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