In Memory of Marilyn Sue (Adey) Keck

by her husband
Doug Keck
Updated February 1, 2003

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Marilyn was a straight "A" student in Burlington High School and Junior College. She was a "stay at home mom" until the kids started school.

Marilyn had been active in many church and community activities. She helped with the youth club in church, sang in the choir and was an active member of the Des Moines County Lioness Club. All of her working life, she was an office oriented person. She was an office manager, a bookkeeper, a secretary and a typesetter. She typed over 90 wpm on a manual typewriter. I know she was faster on the electric typewriter and the computer. She used computers at home and at work. Much of the time she used a compugrahpic typesetter for a local printing company.

Marilyn loved to knit, play the piano, and play a game of solitaire. Every morning she would go into the living room and sit down at our grand upright piano. She would play some of the older show tunes from her favorite piano book and then go to some hymns from an old hymnal. Then she would sit in her chair and start to knit. Most of the time she was either making something for a baby in the family or a child's sweater. The sweaters would have a teddy bear on the front, either holding a balloon, ice cream cone or bugle. She sold many of them at local flea markets. Her display rack was full of sweaters, she was ready for the next flea market so she stopped knitting. In December of 1996, she was awarded the "Best Craft" plaque in a craft show. She sold every one that she had made. A month later when she tried to start knitting again, she was unable to understand the knitting instructions. Her computer skills vanished about the same time.

She also started to have problems at work. She was not able to understand simple changes in her duties at work. She had lost the ability to learn new duties. At about the same time, her employer changed insurance companies, and the new company denied her claims for treatment of depression. Marilyn felt the only thing she could do was quit.

She found work rather quickly as an insurance clerk for a doctor, but within a couple months, the doctor’s office manager told Marilyn that “she was stupid” and to get out of the office.

For 2 years she tried to file a claim for Social Security because of her disability. In her request, she said she was “not in good mental condition, my memory is bad, my depression is much. I’m not even doing much good at home. I have constant headache and definitely feel I can’t work well any more any where”. Finally in September of 1993 she was declared to have a severe memory loss, and eligible for Social Security due to disability.

In 1996, I took an early retirement so that I could stay home and care for Marilyn.

When she was 52 years old, I started to notice changes in her behavior. She would argue about many things, which was very rare for her. Our sexual contact over a period of 3 years diminished to nothing. I found her in the kitchen at noon one day, she was going to mix a bowl of pudding. She had an electric hand mixer in one hand and was trying to insert a long handled metal can opener as a blade for the mixer. Most afternoons she would soak in the bath tub for a few minutes. She had been able to do everything for herself. One day she got into the tub and turned on the water to take her bath. Somehow the cold water did not get turned on as much as it should have. She did not get hurt, but the water was quite a bit warmer than usual for her. All I could hear was “oh oh oh” instead of calling for me to help. She didn’t even make an effort to get out of the tub until the water cooled down. Then she started getting out of the house without my knowing about it. I tried to use different alarms or door locks, but she still was able to get out. Then other things happened, some involved heavy duty cleaning of chairs, rugs and even the tub.

I believe the proper time to consider placement in a nursing home is not when the patient is ready, but when the caregiver has done all they can. The time had come for us.

Father’s Day June 1998 was the first day for Marilyn in Elm View Care Center. She was on a waiting list for the Sapphire Wings Unit at the Klein Unit of the Burlington Medical Center. I could not wait 6 months to have her placed, so she went to Elm View until there was an opening at Klein’s. She was walking quite well, and tried to leave the nursing home several times. She would have her music book, a jar of Horehound candy and a deck of cards in her hand ready to go with me whenever I went to visit her. I tried to be there for an hour every afternoon. There was a reason for these short visits. I knew that sooner or later I could get burned out. I hoped that if I limited my visits, I could last as long as she needed me.

In September 1998 she was admitted to the Sapphire Wings Unit of Klein’s. In 2001, it was determined that she no longer benefited from the level of care provided in the unit. She was moved to 2nd floor. Marilyn at this time is unable to do anything for herself. She is no longer able to stand and can not remain upright in a wheelchair unless padded on each side. She is eating very little, so I try to feed her a snack when I am with her, and I feel very lucky if she takes a few bites. I bring in strawberry yogurt or apricot nectar most every day. They both seem to go down fairly well. She is in the end stage of the disease.

We didn’t know about Pick’s Disease or what was happening. We just knew something was not right. We went from doctor to doctor, city to city, trying to find a solution. In 1994 she was referred to the Neurological Department of the University of Iowa in Iowa City. There, Dr Thomas Grabowski said that Marilyn “appears to have a frontaltemporal dementia which is rather severe at this point. Pick’s Disease is the best diagnosis.”

Pick’s Disease is a rare brain disease that closely resembles Alzheimer’s, with personality changes and disorientation that may precede memory loss. Diagnosis is difficult and can only be confirmed by autopsy.

The disease can be defined as a progressive dementia commencing in middle life (usually between 45 and 60 years) characterized by slowly progressing changes in character and social deterioration leading to impairment of intellect, memory and language.

Alzheimer’s Disease generally affects most of the brain. In Pick’s Disease, areas of the brain that are most affected are the frontal and temporal lobes. (Medical students often use the mnemonic that “Pick’s Disease pick's off the frontal or temporal lobes but leaves the rest”). According to reports I have seen, Pick’s is a very rare disease with a life expectancy of 8 to 10 years.

Marilyn passed away shortly after noon on January 30, 2003.

Time to find a different kind of support.

Finding support locally for any disease is a challenge. For Pick’s Disease, it is impossible. So I had to make my own support, which I have done online. The most critical thing is to keep your mind busy, and TAKE A BREAK. Don’t be afraid to get away for a few minutes, hours, days, or even a week now and then. There is one support group and that is located in London UK. From the beginning, I have volunteered to help the Pick’s Disease Support Group (PDSG) in London, with their database. I mail out the PDSG newsletters to all Pick’s caregivers in North America that do not have access to a computer.

For several years I have participated in a dementia caregivers chat room online. Many caregivers find us every night starting about 8 PM in the ElderCare Online chat. You will find the link to ElderCare Online on my site, https://www.angelfire.com/ia/dougkeck . Everyone that has an interest in elder care or dementia is encouraged to join us in the chat room.

Now for the fun type things, yes, I do have fun once in a while.

I sell candy online, using eBay. And I try to get away 4 times a year, drive to Canada and spend a week with friends that I have met online. My latest thing, which I hope will keep my mind from rusting out, is to write this presentation.

Email: dougkeck@yahoo.com