Marilyn Keck, Picture and Story

Marilyn Sue Adey Keck

Updated: January 2003

Picture was taken in mid 1980's. Memory loss and changes in behavior sarted to appear in 1990. In 1994, she was diagnosed with "frontotemporal dementia, most likely consistent with Pick's Disease". She has been examined by the Department of Neurology, University of Iowa Hospitals and Clinics. All persons with dementia concerns are strongly urged to see a neurologist. They are familiar with Pick's Disease and other forms of dementia. Although a cure is not known at this time, it is possible that some medications may help.

Pick's Disease is a progressive dementia commencing in middle life (usually between 50 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 picks off the frontal or temporal lobes but leaves the rest".

From the reports I have seen, Pick's Disease has been quite rare, but is becoming more common, due in part to error in diagnosis. Although positvie diagnosis can only be made after an autopsy, neuologists many times can determine the likely form of dementia and suggest possible treatment.

Marilyn had been active in many church and community activites. She helped with the church youth club, sang in the church choir, was a member of the Lions Club, worked as an office manager, secretary, typesetter, (using computerized typesetting equipment) and bookkeeper. She used various computer systems both at home and at work.

When Marilyn was 13 years old, her family was involved in a car accident that claimed the life of her father. She and her mother both had very serious injuries to the head, arms and legs. In the mid 1980' she was under a lot of stress and was under doctors care for depression. In 1990, I started to notice different things. She would argue about many things, could not learn new simple tasks and finally she had to quit work. At that time, the doctors just indicated it was a severe memory loss. Finally in 1994 she was referred to the U of I Hospitals in Iowa City, Iowa. Upon examination by doctors in the Neurology Department and other specialists, it was determined she most likely had Pick's Disease.

She was able to care for herself with limited supervision for a couple of years. In 1996, I retired so I could stay home and care for her. It was quickly getting to the point where someone had to be with her all the time. She forgot how to ask for help, could no longer use the telephone, could not take messages or dial a number. Then she lost the ability to knit, read and write.

In June of 1998, I decided to place her in a nursing home. Physically she is quite well. She would go out a door every chance she had. I had trouble securing the doors. Then she would forget to go to the bathroom. More problems. Then she would go into the kitchen. More problems again. I finally had to give up.

She is in the nursing home now, waiting for an opening in a dementia care unit of another home. It could be several months, she is near the top of the list, but all we can do is wait. She seems to be sleeping well most of the time. I spend time with her every day.

Marilyn only speaks a couple of phrases, such as "I'm stupid" or "in the morning now", and she will repeat them throughout the day. She still "plays" the piano, but has great difficulty, her piano playing skills are lost, for the most part. She used to play several tunes every day, reading the music. Now, she can not even play one tune.

Many times I am asked, "how will I know when it is time to place a person in a nursing home". All I can say is, I knew. In my mind, I knew I had done my best.

You must take care of yourself, no one else can do that. What would happen to your Loved One if something should happen to you?

Take care, my thoughts and prayers are with all care givers and others in need.


Her Loving husband, Doug

September 1998:
Marilyn was moved into the Sapphire Wings Unit of Klein's in Burlington. Klein's is located on the south edge of Crapo Park. There is a large wooden deck and fenced area that is secure for residents and visitors to enjoy. The 16 bed dementia care unit is part of a 125 bed intermediate-care facility, just remodeled in 1996. Klein's is operated by Burlington Medical Center. The staff has shown great caring, preparing special accomodations for Marilyn and I. A card table and chairs were placed in a small lounge where there already is a piano. That is about all Marilyn enjoys, hitting notes on the piano, playing cards and holding my hand. Yes, we still play cards. The rules are more relaxed every day, but she and I still enjoy the game. She seems to be quite content in her new home. That is all that matters.

March 1999:
For several weeks, Marilyn would remove her dentures many times a day. No one could determine why. They may have been uncomfortable, but no sores could be found. Finally they were knocked off the night stand and broke. After consulting with the dentist and the nursing home staff, we decided to put her on a soft food diet, and not attempt to replace the dentures. They could not be repaired.

We are still playing the card game everyday. However, the rules have changed again. If she misses a card, or plays a wrong card, I ignore it. She can no longer tell the difference between the black suits or red suits in a deck of cards. So now we just play with black and red cards. She does fairly well in creating a run of one color, but she does skip a few cards.

July 1999:
The routine of her playing the piano and of playing cards with her has not changed. However, now she just hits a few notes on the piano. She will still turn to the correct page in her piano book, but all she hits is one note, for about one minute. Then she is done playing the piano for that time. She will go to the piano room several times a day, but each time she will just hit a few notes. Then she will go to her room, take a short nap and then return to the piano again. When we play cards, we just go thru the motions of a game. She puts her cards down, and I count my score. We ignore the rules. If she is supposed to have a run, but has a set instead, that is fine. If cards are missing, or if she plays the wrong ones, that is fine also. I can't win even when I play by "her rules". LOL

We do go for a short walk ouside when ever the weather permits. Everyonce in a while, I see things that bother me. A hand shaking a little, or excessive drooling from the mouth, or shuffling her feet when we walk.

I guess I just have to learn how to ignore the little things I notice, and remember to thank God that she is still with us.

January 2001:
Just to update the information, Marilyn can only walk a short distance with the help of a person on each side of her. She spends most of the time taking a nap or in a wheelchair. She does not even touch the piano keys anymore. Part of the reason may be that she can no longer use her right arm. However, she and I still play our little game of cards. Most times she can turn the cards face up and sort them into black and red piles.


Marilyn and Doug Keck
Easter 2000 in the hallway of Sapphire Wings Unit at Klein Center.

December 2001:

Klein Center installed this glider on the front lawn for residents and visitors to enjoy.


Marilyn swinging in the glider.


Marilyn and Doug swinging in the glider.

When Marilyn is on the glider, she faces the street. She likes to watch each car as it goes past. Marilyn is not able to stand by herself anymore. She is either in a wheelchair or in bed. Our card game has also changed again. I count the red cards that are dealt in each hand. I do the dealing, shuffling and turning cards over. She watches real close but she is not able to lift her hand to even touch a card. You may wonder why I still go thru the motions of playing a card game. I just like to watch her eyes as I play with the cards.

April 2002:
Marilyn is not able to sit up straight anymore. She now uses a special wheelchair that had been used by a MS resident. The chair is padded on the sides and it is much easier for her to sit up straight.



January 2003:
It is now mid January. She had been in pain, due to skin breaking down. A pain specialist at the hospital suggested morphine suppositories twice a day. They have been more effective than anything else that has been tried. That has taken care of her pain, but now she has quit eating. It is a challenge, but we try to feed her several times a day. Most times she just clamps her mouth shut and will not accept anything. Once in a while we do get something in her mouth, but then she just holds it in her mouth and doesn't swallow. She has lost 7 pounds in 15 days.

Hospice accepted her on January 20th. The nurse said Marilyn may be here for a month.

January 30, 2003
Marilyn passed away shortly after noon today. Her breathing slowed down to a stop. She is now at peace. Daughter Carilyn and I were with her at the time.

<

The Keck Family

Jim - our oldest son
Carilyn - our only daughter
Tim - our 3rd child
John - our last child