Last week some may have read articles about Justice Sandra Day O’Connor’s husband- who is in love with another woman. He has Alzheimer’s Disease and this isn’t a rare occurrence.

Former Justice Sandra Day O’Connor’s husband, suffering from Alzheimer’s disease, has a romance with another woman, and the former justice is thrilled — even visits with the new couple while they hold hands on the porch swing — because it is a relief to see her husband of 55 years so content.

Dementia comes in many forms and is called many things. Some slowly creep up and other forms of these diseases can eat our memories faster than we devour a good meal. In the end, almost all the dementias kill us. I’ve worked with people with Alzheimer’s and it’s a nasty, cruel and degrading disease. It strips people of their humanity and their very soul. Almost always, they turn into people we don’t know and don’t recognize. And we become the strangers in their world: People with dementia forget who their children are; they forget who their spouses are; they believe they are living in days long past and those days constantly turn backwards.

Living history is fascinating. Talking with people who lived in by gone eras, we learn much about them and US. The journey of going back through time is valuable to most people- reading history books and hearing family tales and all. When you’re alive and slowly being forced back to those times though, it’s not the same. When you steadily step back knowing that you’re forgetting the present, the last thing you’re thinking of is history. People with dementia go back, against their will, kicking and fighting all the way.

There are some antidotes of working with this population that are amusing. This love stuff is ever present with people who have dementia, and it shows up in different ways.

Take Wallace: An old lumber jack, Wallace was a widower who developed Alzheimer’s 10 yrs before he was admitted to the Assisted Living facility I worked at (several yrs ago). He was a down to earth, hard working man whose wife had passed away to cancer 15 yrs before his disease took root. Mary, his wife, was all Wally ever talked about. Her beauty; her food, her driving (or lack of good driving); Wallace’s stage of Alzheimer’s seemed to hover around the days he first met Mary. He was forever “stuck” there and for the most part this was a good thing. Being forever 18 sounds good to me.

Wallace spent his days dressing for non existent but very real-to-him dates with his lady; he primmed and fussed over his appearance and demeanor. He would spend hours making sure his suspenders were just right and that his belt was tightened up enough. He had a knack for using just the right amount of Old Spice cologne- too much and he would wash up again. He sat on the bench over next to the door waiting for Mary to show up. He always had a bouquet of flowers in hand too- it didn’t matter to him that these were fake plastic flowers that we had bought him. Each time that door to the special unit opened he would stand up in anticipation of her arrival. And every time Wallace realized it wasn’t her, he would sit back down and ring his hands and sigh.

So much of Wally’s current life revolved around this endless waiting: It became very difficult to get him to do much else. Like eat. Or go to the bathroom. Or to bed. Wally had a sweet disposition so we were able to distract him enough to get him to do these things. But everything had to tie into Mary’s arrival.

Wally’s daughter was fine with all this. She knew the implications of Alzheimer’s disease and realized these issues might come up.

On the other end of the spectrum we had Sophia: An elegant fashionable lady, Sophie was DX with Alzheimers a couple years prior to her admission. When she came to us she was still very much aware of who she was and what her life had been. She was slowly losing her memories though, and over time she became more and more forgetful of who her family was. She had three grown sons and a husband. Who all visited her daily. Her husband was a Wall Street millionaire and they owned many houses and drove Mercedes and showered themselves with the riches only people of a higher class can afford. Sophie lived in the “higher functioning” unit- the place where residents could stay as long as they could take care of their own basic needs.

The day came when Sophie needed more help to carry out the tasks of daily living: Bathing, dressing and appropriate meal manners were slowly being lost to her. She needed to move to the unit I worked on, where Wally lived. She came over to us full of honor and prestige. She got the private room with the best views; she had the private dining room all to herself. Sophie had changed though: She didn’t want to be a recluse. She asked to participate in the activities and goings on. So it went. She slowly began to invest herself into the daily routines of the unit. And she thrived in this new world. Her husband was appalled with this, but he was a smart man: He could see how happy she was when she was with the others.

Working on these units is no easy job. People with Alzheimer’s disease can be very challenging. And dangerous. Many people do fight. They kick, slap, bite, punch; they throw things at the aides. All in defiance to the care we offer- the care they don’t think they need.

A bath? Why? I just took a bath this morning! They don’t remember the last bath was five days ago.
Lunch? I just ate lunch. I’m not hungry! They forget they refused breakfast too…and last night’s meal. And they’re losing weight.

Nurses and aides must chose the battles they fight. The tasks of the unit take priority over the supervision of small and harmless events that often don’t catch our attention.

One of the events that swept right by us was the growing relationship between Wallace and Sophie. Of all the people in the world we never would have thought these two would match up. But they did. Sophie reminded Wallace of his Mary and she had an uncanny resemblance to her as Wally remembered. At first, they carefully hid their blooming love from Sophie’s less and less present husband and sons. They were like teenagers dating someone their parents didn’t approve of.

As Sophie began forgetting more and more of who she WAS, she was developing a new life as the woman she had become. Those of us who work with this horrible disease recognize thats it’s best to celebrate the current and often short lived world of our residents. If they think it’s 1920, then it’s 1920! Why fight to get them back to the future, a future that they cannot ever remember? Living in THEIR world is the best way to give them peace and comfort. It might be 1920 for now; next week it could be 1910…and so on.

It’s very sad to see this happen, but it’s very common. Some victims are fortunate enough to get “stuck” in certain periods of their lives, as Wally was. Others lose it all and go back to being the infants they once were. Sophie was regressing at the usual rate, for lack of other term. She was a star struck teenager, in love with a boy who was just a little older.

In one of the few cultural examples exploring old love — the film “Away From Her,” based on an Alice Munro short story and released in the spring — the starting point is similar to the O’Connors’ story. A man who cannot imagine life without his sparkling wife of some decades watches her slip into Alzheimer’s and then a romance with another patient in a nursing home. In the fictional example, the spousal devotion is such that he arranges for her new boyfriend to return to the nursing home after seeing how crushed she is when the man moves away.

When we realized the romance between Wally and Sophie had reached the stage of them two never wanting to apart, it created some challenges for us. First, Sophie’s family was extremely upset about this. Her sons viewed Wally as a money hungry marriage wrecker; her husband was jealous and totally distraught over his wife’s “infidelity” as it were…her family had no real idea of how Alzheimer’s disease destroys the mind- how it robs people of their identity and soul, never mind their memory. They didn’t understand how victims do indeed travel back through the times of their own lives, to decades and years and moments of the their own pasts. Sophie was at a time in her life where she had not met her future husband. She hadn’t recognized him in several months. We educated them and they grew to accept peace with Sophie’s new “life”. Her husband saw Wally as a past version of himself, which is exactly how Sophie viewed Wally.

Of course, it illuminated the relationships that often develop among Alzheimer’s patients — new attachments, some call them — and how the desire for intimacy persists even when dementia steals so much else.

Sex and old people are often the cited as a reason so many don’t want to grow old. After all, old people can’t really have sex, right?

WRONG. I have seen so many elderly people have sex it’s really mind boggling. Working in a nursing home, a hospice, and the assisted living home I can tell you this: Old people have sex, often, they have wild passionate sex, without any cares as to who is watching. Even with the mind being destroyed, the desire and need for sex is always present. Right up to the end.

Wally and Sophie glowed when they were together. They ate their meals together; they attended activities together; they went to religious services together; they held hands as they walked about the unit together, marveling at the wall colors and artworks and antics of the other residents. They enjoyed each other’s company immensely. They were “allowed” private time together each evening, after much ethical and moral debate, and state Ombudsman assisted guidance.

Sophie tucked Wally into his bed every night before she went to her own room to go to her bed. They always kissed one another good night as though it were their last kiss. One night is was.

Sophie became ill. She caught the usual round of stomach viruses that attack long term facilities each year. She was really sick though, we could tell something wasn’t right. She was feverish and refused all drinks and care from us. I sat down on the edge of her bed and held her hand- and asked her what was going on. She told me she missed her Wally. They hadn’t been able to be together for almost a week and she told me her heart was breaking. She also did what many people in her condition do: She told me she would die if she didn’t see him soon. I pleaded with management to allow a one time disregard for the isolation rules- to allow Wally and Sophie a visit. Of course they would not bend this stupid rule, even though Wally himself was sick with the same damn bug.

What’s an aide supposed to do? Break the rules, thats what. And I did just that. I signed up to work an overnight shift that week. After I came in and did first rounds, I managed to get Wally into a wheelchair and pushed him into Sophie’s room. Wally had become so weak he could not walk anymore…once in her room, she felt his presence and immediately sat up in her bed, something she had not done in several days. They embraced and kissed one another and talked softly. I did not listen as it was none of my business. I left them alone for about 5 minutes and returned Wally to his bed. As I did rounds the rest of the shift both Sophie and Wally appeared as well as they had been: Sickly but not acutely so.

I left work at 6am and when I came back that afternoon to work 2-10, I heard: Sophie had passed away shortly before breakfast. The nurse on duty noted that she had a smile on her face when she was found. She died a quiet and apparently peaceful death.

I went to see Wally. His daughter had told him. His memory interrupted his ability to absorb this too…When clear he was at peace with it. He fondly reflected upon all the times they shared together- well, not real times but dementia times. He told me about the cruise they went on; their wedding and how she had planned it to happen on her own parents’ anniversary (Wally’s real wedding to Mary did indeed happen on her parents wedding date); he told me all about the birth of their daughter, which is forever mad that he wasn’t able to be present for- he was in the South Pacific at war with Japan…he also mentioned, through all his dementia related confusion, how he saw Sophie just last night and he regaled their last kiss. It left me with tears in my eyes and a large ball in my throat. Then Wally would forget what we were talking about and ask me why I was crying.

The next morning I heard that Wally had passed away- exactly 24 hours to the minute after Sophie. The nurses notes mentioned the smile on his face at time of death. And the peaceful nature of his passing.

The lovers of the unit had died, and so did a part of every one of us who worked there. It was an odd situation for us, and one of the first where we had to get through our own misgivings and prejudices and demons and devils of how to best deal with relationships between residents. It wasn’t uncommon for this to happen- residents falling in love. What was common was the separation of them, by units or a move to another facility. At all costs, the bonding was something we would never allow. It wasn’t appropriate. It was immoral. It was wrong.

But was it? Now it’s much more common to see nursing facilities allow these relationships to blossom and bloom. Human rights, a better understanding of the disease process of dementia and the more modern thinking of families has led to this change in thinking.

I felt a sense of bittersweet pride when I read about Justice O’Connor’s husband, and how Sandra dealt with it. Her attitude is to be commended. Not too many spouses fully understand and appreciate what these romances are really about: Times gone by and the world as it IS, to the person with the dementia. They have lost just about everything that made them who they WERE; why not let them enjoy who they are now?