New Member from Massachusetts.

[Guest guest]

Hello,

I was added to the CJDVoice list. My name is Suzanne and I live in

Massachusetts. U.S.A, on the South Shore. My dear 78 year old mother died

December 10, 1998 from Creutzfeldt-Jakob Disease. My sister (who is also a

member of CJD Voice), brother-in-law and I were devastated. We had never

heard of CJD prior to this, (we had heard of mad cow).

Reflecting back, I now remember little signs that I didn't pay much

attention to. You see, my mother was a vibrant, independent, socially

active woman. She lived alone and took care of her yard and house, loved to

garden, made all the apple pies for my sister's restaurant and never missed

her weekly game of 500 Rummy with friends. She loved to read, especially

le Steel and could finish a book in a night. She also loved puzzle

books, watching " The Young and The Restless " , " The Bold and The Beautiful " ,

" Judge Joe Brown, and " Judge Judy " . She never missed watching the Catholic

Mass on cable television and prayed her rosary every morning and night or

thoughout the day when she wasn't busy. She was deeply religious and never

missed weekly Mass. She also belonged to several Senior Citizen groups.

I remember telling her Christmas of 1997 I had renewed her favorite

magazine, and the subscription would expire in 2002. " Just think Ma,

you'll be 82 yrs. old with it expires! " She looked at me and said " I won't

be here. " I remember saying: " Why? Where are you going? " She answered

" Oh, just you wait someday you'll be surprised what I have. You have no

idea what I feel like. " I thought maybe the holiday's made her sad without

my dad, who died in June 1983, so I let it go. Off and on over time she

would make little comments like " I'm getting so old lately. " " I feel

funny, I just don't know. " " I can't put my finger on it, but you won't

have me around much longer. " I thought maybe she wanted me to spend more

weekends with her, or she needed attention...but that was so unlike her.

She talked often about dying, and just last summer she sat outside on

her swing with my sister and discussed her views on death, angels, and what

she wanted to wear in her casket. Once she asked me if I was afraid to

die. I remember telling her " death and taxes are two things we can't hide

from. " I tended to joke, or change the subject of death with her....maybe

because I thought she'd always be around...little did I know...

On October 13, 1998 I wasn't feeling well. I decided to call in sick

and called my mother to come and stay with me. She quickly packed her

clothes and was at my house in 50 minutes. (She lives 40 minutes away.

When she arrived she called 911. I had a near fatal asthma attack, was on

a respirator in ICU for 3 days and in the Critical Care Unit for 5 days. I

eventually got well and went home on October 21. When I returned to my

home at 10 p.m. after a late discharge, I found my mother walking around

the house without the lights on and using a flashlight. She always keeps

the house well lite, so I thought this was rather odd. She answered the

door and said " Oh, hello " as if she didn't know me.

My mother continued to stay with me while I was recuperating from the

hospital. Each day, I noticed her behavior changing more and more. She

would check the doors, her wallet, keys, clothes, purse, and belongings.

Soon the ritual was happening more often. She started hiding her

toothpaste behind my grandmother's picture, her toothbush behind another

picture, her earrings and wristwatch in a candy dish in the living room all

the while keeping notes to where her belongings were. I wanted to take her

to a doctor, but she refused. My mother wasn't one to go to doctor's. The

only medication she took was a multi-vitamin and an occassional aspirin.

One afternoon we decided to go out for some groceries. My mother

drove her car. She had great difficulty and kept swaying to the right, she

would apply her brakes in the middle of the road and when we got to the

parking lot she appeared very confused, disorientated and was not able to

park the car, so we headed home.

I asked her to play 500 Rummy one evening for a change of pace. But

she could not shuffle or remember how to play the game. I knew something

was drastically wrong at this point. I called my sister.

On November 1, 1998 my sister and brother-in-law came for my mother and

drove her car home. When my mother was on her street, she looked at one of

the houses and said " Look at that new house! " the house had been there

forever. After getting home, she went to unpack and asked my sister who's

clothes were in her closet and drawers......they were her's.

The next morning, my aunt called my sister. My mother had called my

aunt, asking her to call my sister, because she couldn't remember how to

turn on the television. She also mention she looked for me and my dog and

couldn't fine us. My sister then went to my mother's house to stay with

her. The next morning, November 3, my mother came downstairs wearing

clothes my sister had saved from high school. My sister never said a word

and took her to the doctor's. She did fine with the tests and my sister

drove her to her house, the next town over. My mother did not recognize my

sister's home. At this point my sister drove my mother to the Emergency

Room of our local hospital. She was admitted after not being able to

remember 4 words the doctor had dictated to her.

After two days in the hospital my mother was placed in the new elderly

behavioral unit because she started wandering during the night. She was

diagnosed as suffering from depression and prescribed Prozac. Later they

wanted to try a nicotine patch to help improve her memory, which we

refused.

We watched our mother get progressivley worse. We asked for an M.R.I.

and other tests, that were not done. We told them it was physicological.

We were very upset and it was very frustrating to watch her like this...we

felt hopeless. We started calling other doctor's for help and advice. A

doctor from Massachusetts General Hospital said her symptoms were

physiological and on November 18, 1998 we transferred our mother to Mass.

General Hospital by ambulance.

The doctor's began testing immediately. They asked us if she was

overseas. If she ate beef in England. We told then that she had visited

Portugal in 1984. They named several diseases they thought she may have,

one being Creutzfeltd-Jakob Disease. Not knowing what this was, we

immediately searched the internet that night. We were devastated.

My mother began to loose interested in food in early November and by

now was not eating. At one point she thought her food was poisoned. She

would tell me " Don't eat any food here, they put poison it in it. Look at

all those people over there, they are all dead. " She was pointing to the

wall in her room. Another time I went to visit her and she has thrown her

tray of food all over her bed.

By the end of November she was extremely paranoid, had hallucinations

and needed to be tied to the bed to keep her from wandering. Her speech

was also regressing. She would make odd sounds and rock back and forth.

We approved a spinal tap and later a brain biopsey. The brain

biopsey confirmed the CJD. By now she was bedridden and not speaking. We

decided to take her off the feeding tube (a decision I had the most trouble

with) and with the help of Hospice brought my mother home to die in dignity

on December 2, 1998. My mother died a very peaceful death on the morning

of December 10, 1998. My sister, brother-in-law and I were with her.

I miss my mother terribly. Her death and illness consume me. I think

about her and this disease every waking minute. I don't know why God gave

my mother this horrendous illness, but I do know He works in mysterious

ways. I am sure He knew we would talk....and we haven't stopped.....

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