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.