My first job after college was coordinating activities on the dementia unit of a local nursing home. The 20 residents were in varying stages of Alzheimer's disease and related conditions. One of my residents, Helen, was dedicated to a male resident, Ralph, who had never been married. She followed him around, fussed over him and demanded to sit next to him in the lounge and in the dining room. Any resident who took her spot was in for it, and I spent a fair amount of time running interference.

She even accused him once of running around on her with me, to which he gave her a befuddled look, and said, "You're crazy. She's too big for me anyway."

God bless the lack of a filter. Want thicker skin and fodder for self-deprecating stand-up? Work with folks who, if they ever had tact, certainly didn't now.

"Thanks a lot, Ralph. And by the way, you're way too short for me," I said. He laughed. He was 6'2".

Helen fell into step beside me in the hallway one day. I feared disciplinary action, but got more to the story - there's always more - instead.

"My husband was a good guy," she said. "Every Friday, he'd come home, bring me his paycheck, and we'd go shopping."

"That sounds wonderful, Helen. I need a guy like that. I bet you miss him," I said.

"Yeah, I sure do," she said. "But I don't even know where he is. I guess he's dead now." And she shuffled off down the hall.

To say that this work moved me and changed me for life is an understatement. Alzheimer's takes life experiences and scrambles them like this, leaving feelings and memories sometimes intact, sometimes not, and skewing the timeline so things that happened long ago are clear as day, and what just happened may as well not have at all.

It's often called "the long goodbye", and long it can be, lasting almost twenty years from beginning to end in the most extreme cases. This not only causes slow deterioration in the intellectual and physical functioning of the person who has it, but significant stress for family caregivers, especially and usually spouses and adult children.

November is National Alzheimer's Disease Awareness Month. President Ronald Reagan's diagnosis brought the disease into the light, and now another government figure's experience with it is in the news. Former Supreme Court Justice Sandra Day O'Connor's husband John has had AD for 17 years. He was recently reported to have connected romantically with another resident with dementia in the facility where he now lives. The story was originally reported by Veronica Sanchez on Phoenix's KPNX.

Al Tompkins at Poynter Online spoke with Sanchez about reporting this story. She said:

The question of whether this is news or "too personal" is very simple for me. The family said they wanted to bring awareness to the reality of Alzheimer’s, that they are not alone. From the moment the camera rolled, that was our objective.

A man and a woman sitting in the corner holding hands, walking around the unit watching television together, is not uncommon by any means," says Richard Powers, associate professor of neurology and pathology in the Alzheimer's Disease Center at the University of Alabama at Birmingham.

"You've got to remember that this isn't about passion," says Powers, a geriatric psychiatrist and chairman of the medical advisory board for the Alzheimer's Foundation of America. "This is about two people trying to find friendship and companionship because they're lonely and lost and oftentimes frightened."

Powers says that sex in such situations is fairly uncommon and that often these relationships begin and end with hand-holding and flirtatious behavior.

Caring Kay B linked to an essay that another famous caregiving daughter, Ronald and Nancy Reagan's daughter Patti Davis, wrote for Newsweek after the O'Connor story broke.

Sandra Day O'Connor has learned probably the most important lesson that Alzheimer's can teach—that while it can steal memory and time and possibilities, it can never steal love. Love will always be outside its reach. And sometimes those of us left behind understand even more about love by letting go.

Joan writes at The Alzheimer Spouse. She commented on the USA Today piece:

No one, absolutely no one, who has not gone through the Alzheimer's experience can ever possibly understand the pain and devastation it brings down upon relationships, emotions, and the physical and mental health of the both the caregiver and sufferer. I know I didn't - until my husband became an Alzheimer patient.

She wrote this response to the O'Connor story recently on her own blog.

So the question is – if they are no longer the person we knew; and if they have no memory of us, should we be as accepting of a new relationship they may form as is Justice O’Connor?

I still feel that I would be shattered if my husband found a new “love”, even if he did not remember me, but I have lived with this disease long enough to know that we never know what is ahead, and we never know how we will react to it.

What do you think? Would you be able to accept it? How do you think you would react?

Her readers responded on the discussion board. No one there has links to blogs, but I'd encourage you to go and check out the comments. Several of them are very powerful.

Patty McNally Doherty's parents, Richard and Gertrude, were featured in the article. She left this comment on the online version:

This is the kind of writing, as painful as it is for families to read, that must take place if people are going to understand why curing this disease is so important. Most of us have parents we dearly love, who love us, and nothing can ever change that, but that is the “real” world. With Alzheimer’s disease, the “real” shifts. There is no control, not one tiny bit of control, that one has. We can’t “make” our loved ones act the way they used to. We can’t “make” them say what they need to say, or do what they need to do. We are completely powerless in every way, shape and form. It is the challenge for the rest of us, to love and protect them. At least, that’s how it was for me.

The day we found my dad fully clothed, and sound asleep in another resident’s room, for me, it wasn't difficult. For my mother, it was more of a challenge, but she fully understood the disease and handled it appropriately. There was no relationship, as anyone caring for one with Alzheimer’s can attest, because the sustainable connections of one unique individual to another unique individual simply doesn't exist in the Alzheimer's world. Had it been the "real" world, my father would have been in my mother's arms and none other. He adored her.

McNally-Doherty also writes at The Unforgettable Fund blog, affiliated with The Unforgettable Fund, the organization she began following the death of her father Richard from Alzheimer's disease in 2006.

The Unforgettable Fund has three purposes:
1. To serve as a collective memory bank. We're posting favorite photos and memories of loved ones, making this a place for families to visit and remember.

2. To serve as a way to fight back. The Unforgettable Fund puts your entire donation - minus PayPal's minimal online transaction fee - directly into Alzheimer's research at Scripps Florida in Jupiter, Florida - the largest, non-profit biomedical research institute in the world.

3. To serve as a voice. Our blog explores five areas of Alzheimer's: From the Lab, From the Home, From the Heart, From the Vault, and From the Rooftops

This effort is dedicated to our unforgettable loved ones.

Mona Johnson at The Tangled Neuron reminds USA Today readers that not all people with Alzheimer's will exhibit this - or any - behavior.

Thanks to Betty Proctor and Patty Doherty for their matter-of-fact discussion of this issue. The painful experiences they endured demonstrate the need for more funding for Alzheimer’s research.

But while we advocate for increased funding, we need to be careful we don’t stereotype people with the disease. Not everyone with moderate or severe Alzheimer’s forms this type of relationship. And millions of people with early-stage Alzheimer’s have problems with thinking and memory, but remain involved with work, family and community.

Wonkette wonders why it was okay to videotape John O'Connor and his friend in the facility.

John was videotaped holding hands with the unidentified patient and his family was called for comment. Their son, Scott, responded that Sandra was relieved to see him relaxed and happy. Because, really? What do you say when the press calls your house to ask how you feel about your husband of 55 years who probably doesn’t really remember you having a girlfriend in the nursing home?

[Full disclosure: my next-door neighbor (and surrogate grandmother) from back home developed Alzheimer’s when I was in high school. She lost all memory of her husband, eventually coming to believe that he was her father and, like John, had to be placed in a care facility. The local television station taped her husband visiting her in the nursing home for Valentine’s Day and bringing her cards and flowers trying to get her to remember him and speak. It was the sweetest and most heart-wrenching thing I’ve pretty much ever seen. The thought that a TV station would think it okay to tape an Alzheimer’s patient and his Alzheimer’s girlfriend, show it to his wife and family and ask her for comment makes me ill.]

And because it's home sweet DC, the commenters manage to tie it to the Bush-Gore nonelection, and a Wonkette p.s. confirmed that the tv station had permission from the families to film.

Sharon Brothers at the Caregiving Crossroads isn't so sure about publicity for the assisted living residents.

While I applaud the openness and acceptance of the family and staff, I’m concerned for the individuals who are on display. Many people with memory loss have moments of clarity – will those moments cause these individuals to become anxious, concerned or fearful about their behavior, perhaps without understanding why?

It is my hope that the love, compassion and understanding of the family and the staff will compensate for the loss of privacy that the individuals are experiencing by making their story a public event. But I can’t help but wonder if this were my husband – or my father – what choice would I make?

Ruth and Ellen write the GeezerSisters blog from Texas and Poland, respectively. They helped to take care of their father, who had Alzheimer's for several years.

Ruth writes that she was fine with his relationships with other women in the care facility where he lived, but others weren't:

“I think he should go for it,” I told the people who worked at the center where he stayed. But the woman’s children weren’t as laissez-faire as I was. They told the center that their mother was a good, Christian woman. She wouldn’t be taking up with another man. A little later, they moved her somewhere else.

The girlfriends came and went, then finally, they were gone for good. My sister and I always knew that Daddy had taken care of our mother for years before her death; we felt he deserved any scrap of happiness he could find.

But that’s the view of the “children” — even if we’re awfully old to be calling ourselves that. I can’t imagine what it must be like for Sandra Day O’Connor or any other spouse of an Alzheimer’s patient. You know, intellectually, that your spouse is no longer who he used to be. But how painful it has to be to see him with someone else — even if (or especially if) it makes him happier and makes your own situation easier.

Amy Sterling Casil saw her grandmother through Alzheimer's and feels for the O'Connors.

John O'Connor is in that place. There's no telling who he believes his lady friend is where he is staying. Or who he thinks Sandra is, when she comes to visit. He's crossed that line when he no longer remembers his spouse, the mother of his children. My heart goes out to her and their sons, and to John and those who care for him. I know what this is, and I have been there. I have closed my grandmother's house and I keep her things. I even sleep in her and Bampy's bed (my grandfather). These things have ever been with me.

The mockery of the insensitive and ignorant cannot take Sandra Day O'Connor's dignity or graciousness away from her. This is a human tragedy suffered by so many as people live for increasingly long periods of time and the disease becomes more and more apparent. She has my complete admiration and support. I know how difficult it is. And I know what it feels like to look into the eyes of someone you love, and realize that they do not know you, at all, and never will again.

Reenee is a blogging nursing home activity director.

Rare is the spouse, caregiver, son or daughter who can accept the limitations of their loved ones. Alzheimer's and Dementia is heartbreaking and difficult to understand for most caregivers, therefore when we come across a family member or significant other who is aware of the ravages of Dementia or Alzheimer's, we're sure that this particular client is enjoying the best quality of life that they can. It looks to me like Sandra Day O'Connor is one of those rare people with the understanding of what Alzheimer's can do to a brain.

For more information about Alzheimer's disease and related dementias, including links to local chapter educational programs and support groups, visit the Alzheimer's Association Website.

The National Family Caregivers Association offers help and the
Administration on Aging's National Family Caregiver Support Program have useful information for the millions of Americans caring for loved ones.

Laurie White blogs at LaurieWrites