He's 65. She's 62. But Doug and Marilyn Keck kiss with the frequency of newlyweds. And they hold hands wherever they go.
Viewed from afar, they look like the poster couple for happiness. It's all a cruel illusion. Married the day after Christmas, 1956, the Kecks are supposed to be entering their golden years. But a rare form of dementia known as Pick's disease has robbed them of that.
Now, when Marilyn kisses her husband, or takes hold of his hand, there is no way he can know whether it is out of love, or even out of familiarity. "I think she recognizes me," he said, the glimmer of hope evident in his tone. "But I don't know for sure. I wish I knew. I wish I knew."
Doug can't really be certain his wife recognizes anything more than his shape and size. Nurses in the Sapphire Wings Unit of Burlington Medical Center's Klein Center where Marilyn has lived since September 1998 - have told him she has attempted to kiss other visitors who are of similar build to her husband. I like to think she knows me," Doug said.
It was in 1991 when Doug really started to notice his wife's memory was slipping. Three years later, on a trip to the neurology department at the University of Iowa Hospitals and Clinics, Marilyn was diagnosed with Pick's.
According to Counseling and Diagnosis in Dementia, a unit of London's National Hospital for Neurology and Neurosurgery, Pick's Disease is a progressive illness that is contracted, typically, between age 50 and 60 and leads to "impairment of intellect, memory and language."
People between the ages of 20 and 80 have been diagnosed with the illness, for which there is no known cure.
Doug said treatments with large doses of vitamin E have been shown to help slow the effect of Pick's Disease. Whether getting Marilyn to a specialist earlier would have helped he does not know, but Doug urges people with loved ones experiencing memory loss to see a neurologist right away.
Marilyn was able to care for herself initially after the diagnosis, but in 1996, Doug retired from his job at the Area Agency on Aging so he could stay home and care for her. But within two years - during which time she'd forgotten how to knit, read and even speak clearly - the job had become more than he could handle and she had to be put into a home.
Mary Parsons, RN, third floor day-shift supervisor at Klein Center, described the deterioration of Pick's Disease as a return to infancy. While babies learn new skills like walking, talking and potty training, Parsons said people suffering with conditions like Marilyn's lose those skills and eventually they become helpless, just like a baby.
Before her illness, Doug said, Marilyn was an avid piano player, and the two regularly played lengthy games of Shanghai rummy. She still does those things, but it's nothing like it used to be. Now those activities are just steps in Marilyn's daily routine. Monday was just like any other day.
Marilyn's face lights up when Doug comes into the room and bids her hello. She is lying down for a rest, but quickly grasps his hand, stands, and leans in to share a kiss.
He helps her on with her jacket - the University of Iowa jacket that matches his, the ones they gave each other for Christmas a few years ago - and downstairs they go for a short walk, to enjoy the cool breezes and clear sky of a crisp autumn morning.
After their stroll, Doug and Marilyn return to her room, where she snatches up a well- worn binder fill of sheet music and he picks up a deck of cards before they make the famliar journey to the lounge. Marilyn plays the piano as her husband sets up the card game. There is no discernible tune in her playing, and her fingers on the keyboard are similar to the hunt-and-peck style of a novice typist.
After a few moments at the piano, she comes to the table and sits opposite Doug, waiting from him to deal the first hand. Marilyn doesn't remember the rules to the game anymore, so she lays down her cards even before Doug is finished dealing. She wins every hand.
Once the card playing is done, Marilyn returns to the piano, opens her music book to "In May" and pounds feverishly on a single key. It is as though her soul is fighting with her brain to make the music come out.
Then, without fanfare, Marilyn leaves the piano and grasps Doug's offered hand for the walk back to her room. For Doug, the hard part comes next. It is time for him to say good-bye till tomorrow. He will leave. She must stay
Though his emotional shell has hardened over the years, after helping care for both his aging mother and mother-in-law before Marilyn got really sick, Doug said the leaving is still difficult.
"When she first went in it was rough," he said, just knowing she would never come home." Doug said he would take her out of the nursing home if he could. The loving husband would like to. The practical man knows it wouldn't do her any good. If it would serve some good it would be a different story," he said.
Parsons said residents of the Sapphire Wings Unit are treated like family by the staff and by each others' relafives and friends. Even when Doug isn't around, Marilyn has a routine. All day long, she goes back and forth between her room and the lounge, alternately laying in bed and trying to tickle the ivories.
Parsons said the lounge door has to be tied shut at night or Marilyn would play piano at all hours. For Doug, these routines are all signs of Marilyn's continuing deterioration.
"A year ago she was able to play the card game," he said. "She was able to play the piano. She was able to walk a lot better". Over the past six months, Marilyn has begun to shuffle her feet more frequently when she walks, he said. She has had a few falls, too. And at a recent care review committee meeting, Doug said the pastor made note of Marilyn's decline in just the last month.
There is a routine to Doug's days and weeks, too. Between visits and volunteering, he said, he's got just one day every two weeks that he can truly call his own. And even on those days he visits Marilyn.
Only four times since she went into the nursing home in 1998 has Doug failed to visit his wife. One of those times was to visit Waterloo to see newborn twin grandsons. The others were when heavy snow stranded him at home.
Aside from his afternoon trips to Klein Center and daily volunteer work at his church, Doug's day begins with an hour on the computer and ends with another five hours online. Since Marilyn was institutionalized, Doug has become active with the Pick's Disease Support Group. It was for his participation in the organization that Doug received a 1999 Governor's Volunteer Award in October.
In the evenings, Doug spends hours in chat rooms, visiting with other caregivers from around the world whose loved ones suffer various forms of dementia In those chats, he both gives and receives support. They are his social life.
The support group-which has fewer than 1,000 members worldwide, including about 360 from the U.S. - also is Doug's new part-time career. He is the PDSG's membership coordinator and newsletter distributor for the United States and Canada. When someone in either of those countries wants to join the group, it is Doug that they write to. Doug sends notice to the members with e-mail to let them know when the online newsletter has been updated, and he is responsible for mailing copies to members in North America who don't have computers. Recently Doug was asked to add to his duties for the support group by maintaining the worldwide membership database.
Next month, the number of Doug's missed visits will double. He is planning a four-day trip to Ontario in December to see his friend, Carol. It's time away that he needs, he said, yet he still feels bad about going and leaving Marilyn behind.
Parsons said she doubts that Marilyn would realize it if Doug didn't visit. "She wouldn't be able to say, 'Where's Doug?", Parsons said. Even knowing that, he said it's difficult to take the advice he doles out so frequently to other caregivers, to reserve time for themselves.
Once Marilyn does succumb to her illness, Doug said he hopes that he and Carol, who is now taking care of her sick mother, will have a future together. Until then, Doug said everything else in life comes second to Marilyn's needs.
Dating Marilyn's condition back to 1988, Doug said he doesn't believe she will be able to carry on like this for too many more years. From onset of the disease, Doug said, Pick's patients have been known to survive for up to 15 years.
For as long as she manages to carry on, Doug said, he'll be there for her. Although married life as most know it is gone for the Kecks, Doug said the vows he spoke nearly 43 years ago still mean something. They are his commitment to her. "A lot of people would move out of town and say "forget about you," he said. "I can't do that."
Marilyn
leads her husband Doug, |
Doug
and Marilyn take their daily walk in the rear courtyard of BMC's Klein
Center. |
Doug
comforts Marilyn after she has minor fall while removing her shoes |
Marilyn
plays piano as husband Doug sets up their daily card game in the lounge |
Pick's Disease Info For
more information about Picks Disease and online resources for caregivers, Make A Donation To help
support Doug Keck's costs with distributing the Pick's Disease Support
Group newsletter, |
The above story and photo's appeared in The Hawk Eye, on November 29th 1999 which is a newspaper published in Burlington Iowa. You can visit their website by clicking on the address below.