KATHY'S STORY
Our journey together began a year before
we were married on May the 24th, 1986 in Elko, Nevada as we committed our lives
to each other. A day to always treasure because of how happy we were and how
this story began. We enjoyed a wonderful weeklong honeymoon camping in the
Yellowstone National Forest. It was a week of absolute quiet and of getting to
know each other better all the while taking in the beautiful scenery of the lush
forest, the animals and many other wonderful places within the park. The only
sad event that whole week was having forgotten to bring along the camera in
order to have pictures to look back on in the future. As I sit here today,
the images and memories of that week are strong and vivid in my mind and I feel
that they are becoming more so as the days go by. I watch the love
of my life progressing with the devastating symptoms of HD with each passing
moment and find I want more than ever to hang on to the memories of who we once
were.
Kathy was always there for her mother, Wilda Starr, who was afflicted with HD
and in a nursing home before I came into their lives. From the time I first met
Kathy to the time of Wilda's passing, Kathy was always making an effort to at
least once a week visit her mother and take her out for coffee or to her home.
When the time came that we were unable to take her out of the nursing home,
because of the feeding tubes, oxygen and other factors, we still made it a point
to visit her at least weekly. They eventually became visits that consisted
of sitting with Wilda and trying to communicate with her using whatever method
we could come up with at the time. Most of the questions were simple yes or no
questions, which her mother answered by squeezing Kathy's hand once for yes and
twice for no. This worked for some time but quickly even that did not work
anymore. Kathy surely had my respect and admiration for doing the best she could
for her mother during this time of her life. I watched so many other
nursing home patients around Wilda sit alone never getting any visitors at all.
The nursing home Wilda was originally in seemed, at least to us, to treat her
badly. They would tie her to a wheel chair with bed sheets and restrict
her movements which we couldn't understand and didn't agree with, so we had her
moved to another nursing home in the hopes that they would understand how to
handle Wilda's illness better. We had such high hopes that Wilda was going to be
better off there that what we got to see at different times of the day when we
arrived to visit, shocked and appalled us to no end. We would find her
lying in her own mess or with her lips so dry they looked like sandpaper!
The final straw came when they forgot to put up the side rail on her bed.
She fell out of the bed and landed right on her face. While Kathy stayed with
her Mom, I ran home and got the camera and took pictures of her injuries and
used them to get her moved to another nursing home. The memories of her face
still haunt me to this day as I believe they do Kathy because of her reaction to
the words "Nursing Home". We were finally able to get Wilda
moved to yet another nursing home that we felt did a decent job of taking care
of Wilda through the remainder of her life. In our minds we easily
recalled all the bad experiences Wilda had encountered and certainly tried to
stay on top of things the best we could. We tried to assure that Wilda was
getting the best care at all times. She was entitled to quality care no matter
what her condition or mental state. We informed the staff of everything that
Wilda had previously been subjected too and let them know that we would not
tolerate or sit by and watch any questionable treatment of Wilda again.
Wilda Starr passed away of heart failure on October 30, 1990 at the age of 66.
This day was made even more difficult for Kathy because we were out of town at
the time of Wilda's passing. Add to that the many regrets we all seem to
have of the things we could have done or wanted to still do. Kathy had
wanted to visit her Mom before we went out of town but we had put it off
thinking we could see her when we returned from our trip. This left Kathy
feeling that she had let her mother down by not being there for her during her
final hours.
The death of her mother affected her very deeply and brought to mind buried
memories of guilt of yet another time when she felt she was not there for a
family member. It was during a time of teenage rebellion when she snuck
out of the house to go to a local amusement park with some friends just to
return home to the horror of discovering that her father had passed away during
the day. Robert Starr passed away of heart failure on June 1, 1974 at the
age of 48. Kathy felt so guilty for not being home that day that she took
his death personally, convincing herself for years that she could have stopped
his death from happening, if only she had been there. She never really
understood how seriously ill her father was long before that day.
I truly believe that the most personally devastating event came to Kathy when
after endless testing, medication and an operation to correct blockage of her
fallopian tubes she found out that she was still unable to have children. This
took a toll on both of us in many ways and it strained our marriage for many
years to come. Kathy's greatest wish and desire had been to have a child before
her mother passed away. Kathy lived in emotional turmoil for years over
whether or not she was good enough for me just because she was unable to have
children. It took a long time to get her to understand that I married her
simply because I loved her, unconditionally.
During this time the reality that she was at risk for HD also became an everyday
conversation in our home. She was consumed with thoughts of ending our marriage
and yet she was torn with the terror of being alone someday in her life.
It took many long hours, which turned into days and then eventually months of
expressing to her my commitment to our relationship and how much I truly
believed in our marriage vows. The fact that she was unable to have children and
that she may be at risk of developing HD, were things I believed we could handle
together, one day at a time.
Testing for HD was something I felt she needed to do if and when she was ready
to face the results. We kept the fact that she was at risk for HD from my
family and friends. Kathy did not want that fact known because she was afraid
people would treat her different. We also felt that no matter what we could
handle the situation by ourselves. We knew so very little about the
disease at that time and what it would truly do to our lives. Yet, like so
very many young couples, we knew that we could conquer anything that came our
way!
The years quickly passed by and changes began to occur to Kathy that neither one
of us understood. Thinking back on it today, I suppose we really did not
want to admit that there was anything really going on at all at the time. We
viewed our situation as many young couple do wondering at times if we were
really compatible and right for each other. We would have such heated
arguments and shouting matches over what I believed were some of the silliest
things and I would question why she just always wanted everything her way. She
would have such mood swings and violent tendencies that they weren't your
ordinary husband and wife squabbles. So unlike the person I once knew.
Due to my lack of knowledge of HD (although I thought I knew enough about it) I
failed to recognize the changes as being part of the progression of HD. Time
continued on and things would be good one day and really bad the next. I think
for awhile there, we were both on pins and needles, day in and day out. I know I
was always waiting for the other shoe to drop, wondering how things were going
to be from minute to minute.
About a year after Kathy and I were married, I chose to become a professional
long haul truck driver. From 1996 until 1999, I found myself working even
harder and longer hours at building a trucking company with my father. Kathy was
on the road with me approximately 95% of the time over the 13 years that I spent
truck driving. All the years we traveled together gave us the opportunity to
become very close and yet it seemed that at times we would be so very far apart.
I truly believe our love for each other was always in tact, even on our worst
days.
In October of 1995, Kathy was involved in a car accident in which she was
rear-ended by a local delivery truck. It was not considered a real bad accident,
but the car was pronounced "totaled" by the insurance company.
It left Kathy with some pain in her back, in her neck and she also began to
experience headaches regularly. We promptly made an appointment to see a doctor
and he suggested that her first line of treatment should be to set up some
appointments with a chiropractor. For a time the weekly visits seemed to help
her with the pain but the headaches continued to reoccur which concerned all of
us. Kathy's original doctor then suggested we see a neurologist in order to
hopefully determine the cause of her headaches.
In July of 1996 while at the neurology office, there was as usual the endless
amount of paperwork to fill out including all of Kathy's family history. I
filled out all the necessary forms and the neurologist informed us that he was
going to run a standard CAT scan on Kathy. We heard the results of the scan a
little while later and were told that they had not been able to find anything
abnormal in their readings. The neurologist concluded that Kathy's headaches
were due to the impact of the accident and she was given a prescription for some
medication to help alleviate the pain. During that same visit, the neurologist
noticed the family history and asked if Kathy had been tested for HD. This
was a moment in time I will never forget! Someone else was bringing up the
subject we had been trying to hide from for so many years. Kathy replied
that she had supposedly been tested when she was about 7 or 8 years old.
We already knew that those tests were inconclusive and the doctor again
confirmed that fact. He went on to ask Kathy if she would consider being tested
that very day and informed her that the results would be back in just a few
short days. The reality of testing for HD and what that could potentially mean
in our lives was beginning to set in for both of us as Kathy asked if we could
talk alone for a few minutes. She then asked me what I thought. All I
could say to her was that it had to be her choice. Whatever she chose to
do I would stand by her and respect her decision. After what seemed like an
eternity she bravely decided to go ahead with the testing. The doctor returned
and Kathy informed him of her decision. We were directed to the blood lab and
samples where drawn. As time seemed to stand still for us in the lab, we both
sat quietly holding each other's hand ever so tight, as if to draw strength and
reassurance from each other. I doubt that either one of us had ever been
that scared at any other time in our lives. The next few days went by and
neither one of us said much about the testing. We seemed to be in our own
worlds, thinking our own thoughts about what all of this could and would mean
depending on the results. We waited in silence.
Four or five days passed when the phone rang and I saw on the caller ID that it
was the neurologists' office. I remember my heart began to race as I answered
the phone. I know the doctor was talking to me as I stood in a daze hearing him
say that the results came back positive and that Kathy really did have HD.
My heart sank to the floor and I felt as though I was going to panic but I knew
I couldn't for Kathy's sake. She stood there looking at me as I continued to
just hold the phone and I am sure she already knew what I was going to say.
But, she asked me to tell her what the doctor had said anyway. I was at such a
lose for words and the pain I felt at that moment made it impossible for me to
hold back the tears in my eyes. This one moment in time was going to
change our little world forever! How could I tell her? Before I could find
the words, she looked at me and said " I have HD". All I could say was
"yes honey, you do and we'll work through this". I had in the
past seen Kathy sad and depressed several times but this went way beyond
anything I had ever seen before. We were at the lowest point of our lives
together. We spent the next day or two crying and hugging each other. We finally
told her family and mine about the test results and I am sure that everyone's
heart sank. A few days later a new problem arose; Kathy was talking about
committing suicide. I asked her why and discovered that all her old fears and
doubts had come back. Was I going to leave her because she had HD?
Was the fact that she hadn't had any children going to make me love her less?
And her biggest fear now, was I going to put her in a nursing home to live out
her days like her Mother? I repeatedly tried to assure her that I married
her for who she was in my life and not for any other reason. YES, she had
HD, a fact that couldn't and wouldn't change but neither would my love for her,
NO
we would not have children together but I still deeply loved her anyway and most
of all, NO, I would not let the same things that happened to her mother ever
happen to her while there was a breath in me.
Several weeks later she said she wanted to talk to me about something. We sat
down and she told me that "what I have to say may be hard for you to take
but I made the decision I do not want any life support, feeding tubes,
etc". She said that she does not want to just lay around in a bed and be
able to do nothing but watch her life go by with tubes and such. This was and
still is a very tough issue for me to deal with but I know why she wants things
that way and I know I have to respect her wishes on those issues know matter how
tough it is or will be to deal with. All I can say is God give me strength to
deal with that time yet to come.
Approximately a month later we went back to the neurologist's because of her
mood swings which were becoming more and more apparent and out of control. She
was also showing symptoms of having a swallowing problem. The doctor
prescribed some Haloperidal for her to take. He also told us that he thought we
should make an appointment approximately every three months to see him so that
he could monitor her situation.
On August 16, 1996, Kathy was given some more devastating news to deal with.
Danny, one of her older brother's at the age of 47, had suddenly passed away
while on a dialysis machine at a hospital here in the valley. He had
received two kidney transplants during his life already and had undergone many
years of dialysis while waiting for another kidney. Kathy was very close to
Danny and was now left with yet another loss in her life of a family member.
Danny was never tested for HD that anyone is aware of but after seeing the
symptoms of HD in action, I believe and am 99.9% sure that he to was a victim of
HD. His symptoms were not as pronounced or as noticeable as Kathy's have become,
but they shared so many characteristics of the disease. Kathy's disease
just seems to be advancing at a more rapid pace than Danny's ever did. Certain
actions and noises that we all noticed in Danny were questionable at the time
but we all accepted them as Danny, just being Danny. Not really understanding
what was going on in his life, we didn't put too much thought into them and just
enjoyed him when we saw him. However in Kathy, those same symptoms of
jerky movements, slurred speech, mood swings and altar world experiences she
escapes to are very pronounced and apparent and there is no denying what is
happening to her. Becoming more informed and understanding the various degrees
and symptoms of the disease have also helped us to deal with the many areas of
our lives that this disease has touched.
August of 1999, Kathy began to complain of terrible pains in her lower right
abdomen in the general area of her ovaries. I was on the road driving truck at
the time and only a few hours away from home, so I asked her to hang on until I
was able to take her to the doctor. I made a quick call to her sister Debbie and
asked if she could keep an eye on Kathy until I returned. When I arrived home, I
found out that Kathy had decided that she needed to go the hospital so Debbie
took her there. It was there that I met up with Kathy. She and Debbie were
in the ER and the doctor's there were running some tests and giving her morphine
for the pain. The doctor's weren't able to find anything wrong with Kathy right
off hand that would explain the pains she was experiencing so they asked to keep
her over night for observation. I of course felt that they were the
professionals in this situation and that they would know what was best for
Kathy. Kathy was none to happy about it since she would not be able to have a
cigarette during the time she was there but she did ask me to leave her a few
for in the morning. I decided that it was not in Kathy's best interest to leave
her with any cigarettes that evening since she was already very obsessed with
smoking and would find a way to sneak off to have them. I did not want to risk
having her leave the hospital or have her smoking in the bathroom in the
hospital. The following morning I was unable to return to the hospital right at
the crack of dawn. We didn't have a car at the time and so I waited for my ride.
When I finally did arrive, I found that Kathy was very upset with me for not
leaving her any cigarettes and for making her wait for them. After taking her
out to have a cigarette she continued to be very angry with me and she was later
released from the hospital with a prescription of Dicyclomine, (10mg) to be
taken four times a day. We never did find out exactly what the cause of her pain
was but she was feeling better so we went home.
The following order of events is a bit fuzzy in my mind and I look back on it as
one of the most stressful times of my life! The first night back from the
hospital began a whole new phase of our lives. I thought the worst was
over but Kathy would not go to bed or to sleep and I just figured she was still
mad at me. The following day still not having slept, she was in a horrid mood
and delusional state. All she wanted to do was argue with me and then she
refused to take any of her medication. I tried to find other things to do around
the house and all the while still keep an eye on her. I called one of my sisters
and she come over in the hopes that Kathy would talk to her but she refused to
talk to anyone at all. I fixed her some dinner and at first she would not eat
anything. My sister and I left her alone for a few minutes and when we returned
we saw that her dinner was gone. I then decided to crush her pills into a powder
form and put that into some applesauce and again my sister and I left the room.
A few minutes later we heard the back door close so we returned to the front
room and found that the applesauce was already gone. When I asked her
where the applesauce was, she claimed that she had eaten it. There just
wasn't enough time for her to eat all of it and we knew that she was not being
straight with us. Something was not right with the whole situation. We started
to look around and found that the applesauce had been dumped outside, into a
flowerpot. When I asked her why she did that she told me that she was pregnant
and I was trying to poison her baby. I was in shock and did not understand where
this was coming from. I started asking her questions about being pregnant, since
I knew that was not possible and she said that it was her friends' baby and his
name was Michael. When I asked her who Michael was, she could not tell me
a last name right away. Around this time I noticed that she was talking to
someone but there was no one else in the house. For the next three days Kathy
accused me of trying to poison her, of trying to kill her and of doing many
other horrible things. She seemed to wander off to another planet, a world
of her own making, things were happening that I certainly was unable to
understand. My family members had mentioned changes that they had noticed for
some time that I was so used to seeing and they seemed to come on so subtly that
I had just accepted them without question. I took some time to ask some
questions and then I saw Kathy in a whole new light as I opened my eyes to see
what was really before me. There was Kathy talking to an imaginary friend,
having a good time and laughing and somewhere in all of this I had become the
enemy. Any time I tried to talk to her, she would hurl her anger and her
accusations directly at me! Then she would return to her own self-created
world. This went on for three days and nights and then things got worse!
I wouldn't think of writing every last detail of the following so I will attempt
to make this a bit brief and only tell the most important parts. The next 24
hours were pure torture! Kathy became violently out of control that evening and
even passed out on me. I assumed she was either faking it or she was so tired by
this point that her body could not stay awake any more. I picked her up and in
the process later discovered that I had given myself a double hernia by carrying
her to the bedroom. A few hours later the battle was on again! She
would not sleep nor would she eat breakfast so I phoned her neurologist and he
suggested I bring her into the ER for an evaluation. After enlisting help from
half the family, we were finally able to convince Kathy to go for a ride. She
was told simply that she was going to see the doctor about not feeling well.
Many hours passed in the ER and several doctors evaluated the situation, it was
decided that the best thing to do was to keep her at the hospital for a few
days. They were thinking along the lines of drug interaction. She
had also stopped taking her Haloperidol, which may have created some sort of
imbalance in her system that triggered this behavior. She was admitted to
the neurology department and given some medication through her IV to help her
sleep.
The next 7 to 8 days were personally agonizing and stressful beyond anything I
had experienced before. I wandered in a daze looking for answers and
finding none. During those days Kathy continued her accusations and the
only time she wanted me around was to supply her with cigarettes. The delusions
were extremely strong and even the doctor's were surprised at her state of mind.
The doctors were trying to determine what dosage of Zyprexa was adequate for her
condition Since smoking was and still is such an obsession with her, we spent
many hours on the smoking terrace of the hospital. They were not very
happy times and the only things she said to me were negative and hurtful.
She was in love with Michael and leaving me, she was continuously pregnant and
she was moving out when she got home, etc. On one particular day after going out
and having some cigarettes, her mood seemed extremely agitated and she again
seemed to go out of her way to make me feel that she wanted absolutely nothing
to do with me. I tried not to take it personally but I must say that I was
hurt! She then refused to return to her room with me and the doctors had
to intervene with some medication and some manual persuasion of sorts, in order
to get her back to her room. My sister stayed in the room with Kathy while I
spoke to the doctors and it was then that we discovered that she had hidden the
pills in cheek. She had asked my sister to take them and hide them. We
informed the doctors about this and they tried to convince her to take her
pills. Again she tried to hide them in her cheek and then she had to be
given a shot, which was a horrifying moment for me. I was standing in the hall
out of sight and she finally realized what was about to happen. She let
out a scream that brought shivers and tears to my eyes as I found myself running
down the hall. I knew that this is what the doctor's needed to do but to feel so
helpless began to overwhelm me. There were so many other incidences over the
days that I thought this nightmare was never going to end.
During all of this my Dads trucking business was severely suffering and I had to
make some choices. Should I try to go back on the road and salvage the
business or should I stay with Kathy although she really didn't care whether or
not I was there and there was nothing I could do for her? The doctor's had no
definite answers to explain why this was happening. They were unable to
tell me how long she would be in the hospital and I struggled with the
responsibilities I could not fulfill. I didn't want to leave Kathy there
and be thousands of miles away. What if something would happen to her?
How would I live with myself then? I also knew that all of this was taking
a toll on my state of mind and I was also dealing with the pain from the
hernia's, my thinking just was not very clear anymore. In the end the choice
seemed to be made for me as Kathy once again became extremely delusional and her
medication was once again increased in order to get her under control. I
never did make it back on the road and my father had to make the painful
decision to close the business we had worked so hard on. My parents lost their
life's savings in the business and I was now unemployed and knew that I was also
heading into financial trouble. The hospital bills would be rolling in and
I was way in over my head. I knew that Kathy's Medicare would not cover all the
expenses so it was time to apply for Medicaid.
Three very long days had passed by now and Kathy seemed to be doing better.
It was time to go home. When the time came for us to finally leave, to my
surprise she refused to go with me and informed me that she was waiting for her
imaginary friend, Michael, to come and pick her up. After talking to the doctors
they decided she should stay for a few more days and increased her medication of
Zyprexa to 20mg. Then it was time to try and go home once again. Things
seemed to be running along smoothly and I was looking forward to taking her home
at last. Then the other shoe dropped once again as she announced that she
was waiting for her imaginary friend, Michael and her imaginary kids to come and
pick her up. This was all becoming so frustrating to me and I had to keep
telling myself not to take it personal, which was really tough to do. After
several minutes of talking with Kathy, my sister and I convinced her to go home
with us. Things were touch and go for several days. I listened to her talk to
her imaginary friend and watched her live in her own world. Things seem to
get a bit better at times and I get to enjoy her attention for a bit on some
days. But on most days she is still preoccupied with talking to her imaginary
friend and is almost always obsessed with being pregnant. Sometimes she
believes that she is even having twins or has just miscarried. She cries,
grieves and goes through the whole process of loosing a child and by the
afternoon she will again be three months pregnant. She also tells people that
she has two other kids and that she does not know where they are and at other times
they are with her imaginary friend, Michael. There are days when she cries
endlessly because she wants her children brought home and there are days when
she cleans up our bird room to make room for the 3 month old twins that she
knows will be coming home any minute now. The details of this situation
sometimes vary and the kids all of a sudden become mine. Some days she packs her
things up because she believes that she is moving out with Michael and on other
days she is packing because she thinks we are moving to a new home. It changes
from day to day and sometimes even from hour to hour. I never know when things
are about to change. We seem to make the best of the situation and try to enjoy
each other as much as she will allow although it always amazes me how quickly
things can change in the blink of an eye.
Her endless smoking is one of my biggest concerns. It is definitely an obsession
and we have both been working on trying to quit. At times I seem to make some
progress in that direction but it is very slow process. Trying to force her to
quit is not the answer and it pushes her deeper into her imaginary world. I have
managed on some days to get her to cut down from just over a pack a day to about
half a pack a day and I have been able to go from her controlling the entire
pack at one time to giving her a few at a time. She is always telling me
she is trying to quit and I think there is a part of her that wants to but some
days seem to be worse than others are. She drops a lot of her cigarettes and I
fear that she will burn our home down so I stay home to take care of her. She
surprised me one day and managed to wander off, down a busy street, in order to
get to the nearest convenience store in pursuit of more cigarettes. When she
takes off by herself, I am afraid that she will get lost or that something even
worse could happen to her. With some limited supervision it would be easier to
leave her for short periods of time and help with our financial situation. Even
if I could find some supervision for Kathy, this would of course open a whole
new kettle of worms for us since the system only allows us to fit into certain
income guidelines or they revoke Kathy's Medicaid. Another
story for another time. So we spend our days together doing the best we can with
the cards we have been dealt in life and wait to see what the next day may
bring. The emotional and financial turmoil this disease plays in our lives
varies to some degree for each of us but there are so many things we share in
our struggles. The way each of us has adapted our lives in order to make it
through day to day, would probably be another story yet to be written. As
we all continue to search and share our experiences in the hopes that when our
stories are told they may help someone else understand that they are truly not
alone, we also pray that some day there will be answers for all of us where
today we have only questions.
As Of June 2000