From My Pad to Yours
By Marie Henderson
Posted 28 September 2004
I made one of the most difficult decisions, which has wrenched my heart.
I
placed my fate in God's hands and am praying that I have made the right
decision. The following is some information on The Lily Pad, which I
have decided to close. The recent passing of my Mom and four other loved
ones whom I have had the privilege to love and cherish has been
emotionally heart wrenching. I find that I am no longer physically able
to work 100+ hours a week. I have decided not to rebuild but rather find
another way to use the gifts God has given me in working with Alzheimer
loved ones in the hopes of helping others by sharing my experiences. The
Lily Pad was an Assisted Living Facility, which accepted only those with
a diagnosis of Alzheimer disease or dementia of the Alzheimer type. The
Lily Pad was founded in October 1996 as a way to take care of my mother,
who was diagnosed with dementia of the Alzheimer type in 1987, and to
help other families prevent or delay placing their loved ones afflicted
with this disease in a nursing home. In 1995 my mother was being
transferred from a
New Jersey hospital to a nursing home in New Jersey. It was determined
by
the medical staff that she would never walk, be capable of feeding
herself nor verbally communicating. She was on high dosages of
Risperdal, Ritalin,
and Haldol. I removed her from the hospital, transported her to Florida
and purchased the house in Ft. Pierce and the seed of what is now The
Lily Pad was sown.
Eleven months after my moving to Florida, my husband
was able to sell our home and businesses and move from Massachusetts and
join me. I discontinued Moms antipsychotic medications and gave her
vitamins, pain medication for her back and arthritis, and .05 mg of
Buspar 3 times a day for anxiety. Up until a few months before her
death, she was not only walking on her own, but she could hold a
conversation, remember the tunes and words to a multitude of songs,
participated in and knew the correct responses to many of our trivia and
memory games, assisted in dressing and undressing, feed herself and was
continent throughout most of the day. She had been on and off hospice
care for the past three years and was lovingly referred to by the
hospice as the Energizer Bunny. All of my loved ones were in advanced
stages of this disease and required a
high level of both physical care and emotional support. They truly
needed
assistance, in all aspects of ADLs, but most of all they needed love,
attention, respect, companionship, and lots of hugs and kisses. Most of
my
loved ones were on multiple medications including antidepressants,
antipsychotics, and antianxiety medications prior to their arrival at
The Lily Pad. All of my loved ones had these types of medicines reduced
or eliminated. All showed great improvement.
All my loved ones came as a result of personal referral. There was
really no typical day at The Lily Pad. We began each day with a good
morning kiss and ended each day with a goodnight kiss. Our motto was
"Even though we have
Alzheimer's it is nothing to be ashamed or embarrassed by. As long as we
remember the most important thing is to love each other." Due to the
nature of the disease, I took each day (more often minute and hour) as
it came. My activities were based on the needs of my loved ones. For
example: If a loved one was concerned about completing homework for
school tomorrow, I would sit down and assist her in her homework
assignment. I collected as much personal and family history as possible
on each loved one, in order that I could relate to the time and place
(lily pad) that they are
experiencing. Their reality became my reality. I encouraged my loved
ones
to be as independent as possible. This could also change many times
during
the day.
At breakfast loved ones might recognize a fork and spoon and
feed themselves, yet at lunch there was no recognition and assistance
was required. Some mornings they would require total assistance getting
dressed. I observed and documented their behavior patterns. They seemed
to instinctively know that they were with their peers. They comforted
each other. They provided each other with companionship whether it was
in
sharing a meal or cuddling and conversing on the couch. The Lily Pad was
a
special place where miracles happened every day. I do not believe all
knowledge is lost. I do not believe new knowledge cannot be learned. I
had loved ones who could not feed themselves and then did, not dress
themselves and then did, not walk and then did, not use utensils and
then did. They
learned words to new songs. I think many of the medicines used prevent
the
above from happening. I also believe that in too many instances we take
away so much of their independence and dignity that we force them to be
codependent. I encouraged them to do all they could by themselves. I
jumped
onto their "lily pad," their reality. I have waited patiently for the
tires
to be changed on the car, gone shopping, visited San Francisco, Paris,
the Bronx Zoo and have not left the house. I have no formal medical
training, just have lived with those afflicted with Alzheimer disease
(runs in my
family) for over 30 years. I believe in the power of human kindness,
love,
respect, and companionship. In return, I was showered with hugs and
kisses
throughout the day. Throw in a few cookies, a laugh and a big hug and
anything is possible.
I would love the opportunity of speaking with someone from the
Alzheimer's Association to see if there is a place for me. I have many
video and audio tapes, pictures
and journals that I have permission from the families to use. My two
remaining loved ones will be gone as of September 1. I have done my best
to place them in good facilities. I will miss them and feel as if I have
betrayed them. I have done what I did for THEM, not the families who
have
had little or no contact. Now that I will not be working my 104+ hours
per
week, and will have access to a computer, I will try to be more active
in this group (if wanted) to share the miracles and experiences I have
had with the 20 cherished loved ones I have been blessed to know and
care for.
Sincerely,
Marie Henderson
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