Re: New Member from Massachusetts.

Posted January 17, 1999 · January 17, 1999

Dear Suzanne,how eloquent and beautiful your words.I am sorry,deeply sorry

for you and your mother.Please don't expect the pain to dissipate anytime

soon,my heart is still in turmoil after 20 years,god bless you,and thanks

for your story,it helps others.

New Member from Massachusetts.

>

>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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>

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Posted January 17, 1999 · January 17, 1999