Information taken in part from CANDID Factsheet, National Hospital for Neurology and Neurosurgery, London, UK

Pick's disease can be defined as:

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".)

According to several reports that I have seen, Pick’s is a very rare disease with a life expectancy of 8 to 10 years.

Marilyn had been active in many church activities from helping with the youth club to singing in the choir. All of her working life, she was an office oriented person, office manager, bookkeeper and typist much of the time. She was what I called a speed typist, typing over 90 wpm. Not too bad for manual typewriters. She also used various computer systems at home and at work, using a computer enhanced typesetter in one of her last jobs. Then in 1991 she started to have learning problems. She was unable to learn new tasks at work. She was 54 years old at that time. The young age, the loss of her memory, ability to learn and reason are strong indications of Pick’s Disease.

Today is different. She is unable to do most common things. If you hold a pencil in front of her and ask her what it is, she will probably answer “yes”. She does not understand or comprehend anything. Special events have no meaning to her. When the family was home recently, she just sat and played her version of a solitaire game. She is unable to carry on a conversion with anyone, all she can say is something like “in the morning now” or “I’m stupid”. Most times it is very difficult to determine what her needs are, she can not ask for a drink, but may say “it’s 9 o’clock now”, sometimes meaning she wants a drink. She can be very vocal, laughing much of the time. Up until now, she has been able to take care of her personal needs fairly well. That is changing. She got into the bath tub a few days ago and turned the water on to take her bath. Somehow the cold water did not get turned on as much as it should have. She did not get hurt, the water was not real hot, but it was quite a bit warmer than usual for her. All she could do was to say “oh oh oh” instead of calling for me to help. She did not even make an effort to get out of the tub until the water could cool down. In the last few weeks, she has started to go out the door. Most times it is out the back door to the garage, but I have caught her a block away from the house, having gone through a road construction project. I had started to chain the doors, but today she figured out how to unhook the chain. If she goes out the front, she will usually go around the block and come back home. I make every effort to go with her or have someone else walk with her, but she has gotten out once. That is one too many times for me. We have been having a few other problems, but soap and water takes care of them most of the time. Pretty soon I am going to have a clean house!

I have respite care 2 hours a day on weekdays, 3 mornings and 2 afternoons. That is helping me a lot. Before, I would be taking a chance in mowing the lawn or doing the wash in the basement. Someone has to be with her all the time, she does not even remember how to call for help or how to use the telephone.

On Memorial Day 1998, too many things happened. I decided it was time to place her in a nursing home. We are lucky to have a great home close by that is operated by the local medical center. The home used to be a hospital in itself, but has been a nursing home for many years. Last year they gutted a wing and made it into a dementia care unit. Check with the Area Agency on Aging if you have any concerns or are just trying to find a good home. They have a care review person that would be aware of any problems and can offer suggestions. We will have a short wait, maybe a month or so, but I already feel better knowing she will be cared for in a home that is experienced and licensed to care for dementia patients. I believe the proper time to consider a nursing home is not when the patient is ready, but when the care giver is ready.

In the meantime, I think the secret of happiness is keep the mind busy. I know it helps me! I mail the Pick’s Disease Support Group Newsletters to Pick’s care givers in the USA and Canada. If you know of a Pick’s care giver that does not have a computer, please have them contact me. The newsletters can be read online at http://dementia.ion.ucl.ac.uk/

Marilyn was admitted to River Bend Nursing Home on Saturday, June 20, 1998. She will stay there until there is an opening in the dementia care unit at Klein's. She is adjusting to the nursing home routine fairly well. She seems to be happy, but everyday she is ready to come home with me when I leave. Someone has to distract her so I can get out the door. I take her to the piano every afternoon and she will try to play a tune, then we play a card game, which we have played for years. She has great difficulty matching card suites and counting, but we still enjoy playing with greatly "relaxed" rules.

Doug & Marilyn taken 4 years ago

Doug's E-Mail
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