When dad turned 75, mom had a birthday party starting early in the morning with a breakfast for all of the "old buddies". Then as the day went one, family came from far and near for one of mom and dad's famous barbecues. It was then that I decided that when mom turned 75, I would do the same for her. We will still have that party only the guest of honor won't be present.

Mom's name was June Burdick

( when her personality began to change, she wanted to be called Junebug so we obliged her). She was 73 in June of 2000. Mom was the oldest child of two girls. Her parents were both teachers and then later in life , her dad went back home to the family farm and farmed until he retired. She went through high school in 3 years, went on and got a college degree in Home EC and went to secretarial school for 2 years. Her and my dad lived for 53 years on the farm that they bought, adding a ranch several years later.

They raised their own beef, mom canned most of the food out of her large garden. She had a large yard with beautiful flowers. Her love was music. She was church organist for 20 years, gave piano lessons for several years to community children. When arthritis made playing too hard, she turned to the paintbrush and took many honors and awards with her pictures. She was also into photography. She has 3 grandchildren and 4 great grandchildren.

Her illness all started in the middle of August of 2000, when dad noticed that she was dropping a lot of things in the kitchen. I didn't live in the state but was able to see the folks Labor Day, Sept. 4. Her and I took a walk and I noticed that she was unstable on her feet and was talking a lot. Mom was a very quiet person. Following is a diary of the next month until her death on Oct. 8, 2000 in Fort Collins, Co.

Sept. 6, 2000 Talked with mom on the phone today and she was having trouble getting her words out. Her left hand and arm was jumping out in mid air unexpectedly.

Sept. 9, 2000 Mom went to a larger hospital for a CT. It showed her to be fine.

Sept. 1, 2000 Mom was admitted to this hospital. The medical report says, " weak with uncontrolled shaking of upper left extremities. Awake, alert, gross low white blood count, oriented to time, place, person, poor memory, nervous, slight slurred speech."Assessment: Possible organic brain disease. During the admitting exam, it was noted that she would slump forward for no apparent reason, could hold things with her right hand but had difficulty holding things with her left.

Sept. 12, 2000 A bone scan was done showing nothing abnormal for her age. A MRI was done and it too showed nothing abnormal. Medical report says: bizarre personality changes." Mom was now laughing all of the time, even at us. She seemed alert and "sharp as a tack" but her personality had changed. She even was saying words that we didn't even know that she knew. One day we found her directing an orchestra in bed. The only diagnosis that the doctors could come up with was a stroke. It was very apparent that she was going to need help so I prepared to move closer to home. Mom was moved to a different place in the hospital for physical therapy.

Sept. 15, 2000 - Massive amounts of lab work was constantly being done to no avail. Her eating ability was now deteriorating. She was having a harder time swallowing, her speech continued to decline, as did her ability to walk. She was getting to the point that she would need a food supplement and eventually needed a feeding tube down her throat. A barium swallow test was done showing "abnormal swallowing reflexes."

Sept. 17, The physical therapy would be of no help to her. A test for Lymes disease was done. Negative results.

Sept. 18, 2000 More blood work. EEG test was done and it was normal. This was another test that would be done over and over along with MRI, blood work, x-rays. The family was becoming as frustrated as the doctors as to what was wrong. They were running out of tests to do on her.

Sept.21, 2000 CT of the chest turned up a normal result.

Sept.22, 2000 Medical report- " experiencing muscle spasms at night-evening agitation". Mom had to be given a sedative to make her sleep.

Sept. 23, 2000 MRI showed nothing new since the last one. More blood work was done.

Sept.23, 2000 Spinal tap was done revealing nothing abnormal.

Sept. 27, 2000 Medical record-"bizarre behavior and question encephalopathy-nothing strongly suggestive of a seizure but unexplained encephalopathy. Mom was scared of the dark on this night. Her speech had become worse-could hardly understand her and at times, I think she knew what she wanted to say but couldn't say the words. Her eating and walking were worse.

Sept. 28, 2000 Chest x-ray turned out normal. Mom was scared of the colors blue and green. She would yell out that she either saw blue or green or that she couldn't "focus". We had to turn off the TV this day,

Sept. 29, 2000 - We were now feeding mom and she seemed to be somewhat confused. Medical report says-"rapid dementia". We decided that we should take her back to the local hospital closer to most family and friends. She could still communicate but very little. She knew that we were taking her home the day before we took her, but am not sure that she knew by the next day where we took her.

Sept. 30, 2000 Mom is in the hospital back home but hardly communicates at all. She stops eating and can not walk. Sometimes her legs become stiff and can hardly bend them. She was here for 6 days when we decided to take her to Colo. to a specialist.

Oct. 5, 2000 A MRI, EEG, EKG, and lab work are done at the hospital in Colorado. The specialist diagnosed CJD. The EEG finally showed "abnormal brain activity". He said that the reason that the other hospitals couldn't diagnose better is because the disease is very hard to diagnose until the very end, however, the first hospital did mention the possibility of CJD.

Oct. 7, 2000 My dad, brother, and myself have a decision to make about life supports. I was very thankful that the folks had taken care of "last wishes" and all we had to do was produce a copy of the will. It was decided that when the time came that there was no more hope, all of the tubes would be pulled and she would just be made comfortable. That night after everyone left

(I stayed in the room on a cot the whole time we would be there)

for the night, I sat by mom and as she stared into the darkness, I wrote her a poem and said "good bye". The poem will be at the end of this article. She went into a coma in the night. Her wishes were carried out-no life supports. She lived 22 hours after the tubes were pulled.

Oct. 8, 2000- We made the long drive back to Nebraska thinking that our local funeral home would go pick her up in the afternoon. Later in the day, we would be called that no one would embalm her and we couldn't have her body. We requested an autopsy to be done to make sure it was CJD. The doctor wanted a facility in Denver to take her and they turned him down. They had the facilities to take care of her and do the autopsy preparations. The doctor then went to the State of Colo. He was turned down again. He then went to the national CDC. Five days later mom would be taken to Denver. Dad had to purchase all of the instruments that would be used on mom because they had to be destroyed. $700.00 was the cost. The same day that we had her memorial service, was the day that she was taken to Denver.

The service was beautiful. We had a big picture of mom with 14 roses for each of us family. There were 14 candles to represent us and the grandkids helped the great grandkids light them as I played the piano one last time for her. It would be weeks before we would hear anything else.

Eventually her ashes came and reports started coming in. The doctor in Co. had been verbally told by the clinic in Ohio that did the brain test, that mom had vCJD. When the reports came, they just said CJD.

The church was full and most of the cards that came had hand written notes in them such as "the community has suffered a great loss", "she was a lady".

One even wrote about mom being her " secret angel" when she was growing up. And even now being grown up felt a sense of peace at mom's presence. What a tribute to a great woman. I know that others miss her also.

In Loving Memory of My Mother

We wished you hadn't gone

but we knew that you couldn't stay

We gave you all our blessings

and all our love you hold.

Now it is time for healing

Now it is time for memories

But wait I say, Are you really gone?

Today I saw you in the flowers

and I heard you in my music

and in your paintings it is you we see

We will chuckle when we do your dishes

For we know they won't be right

Those barbecues we'll miss

and the birthday parties too

Remember that last family picture?

we'll cherish it forever

And when that darn cat acts up

It is your scolding that we 'll hear

Even your final days it was others you

were thinking of, and your final words to us

certainly we'll cherish

We marveled at your strength

We marveled at your love

We marveled at you bravery

And now we say good-bye

But wait I say, are you really gone?

You are everywhere we look

and the memories are galore

Know that our pain is immense

and we miss you "Oh so much"

But now we know you're really never far

for today I saw you in the sunset

and I heard you in the wind

So until we meet tomorrow

we love you and good night

Written by Marianne Lynne Burdick Fisher Oct. 7, 2000

Email: [email protected]