Stories by JL
Letter to Ginna: I Love You! I never would have thought that I’d miss
you so much! We haven’t seen each other much over the last few years
since I moved off to Florida but just knowing that you are not here
tears me up inside! Its that old saying, “don’t know what you’ve got
till its gone”. I sure do miss you sis! I wish I just had a day to spend
with you so I could tell you how much you mean to… me! I think that
maybe Sunday, I will go to the beach, early in the morning and just sit
and spend some quiet time with you! Meet me there, sis. Okay? I’ll be
looking for you in the clouds. Could you please bring Moma, Amber,
Kathryn Michelle, Grandmomma, Mamaw, Uncle Larry, Uncle Dwight, Uncle
Milton, Little Cheyenne, Ms. Daisy, Ms. Beulah, Ms. Lucy, Ms. Gilbert,
Ms. Holmes, Mr. Charles and anyone else you can find that I love. I’d
really like to see them all! Also, please find Donald’s Mom and bring
her too, I’d really like to meet her! Okay, Thanks Ginna, I’ll see you
Sunday Morn! I’ll bring the coffee and my love!
for a moment….that you are a retired senior citizen spending a quiet
leisure Sunday morning in your small apartment. You moved into the
apartment last year after your spouse passed away. You could no longer
physically or financially take care of the home that you and your spouse
had shared for 45 years. Even though you had both worked hard for many
years the money you had put away just didn’t last. The house was in
need of major repairs as you had just not been able to do much over the
last few years with yours and your spouses’ health failing. So you sold
the house and paid off all of the medical bills and other debt. You
had just enough money left to buy a small dependable used car and move
into a small apartment. You hear someone come into the front door and
know immediately that it is one of your children “coming over for
breakfast”. You love their visits but have noticed that there seems to
be more time between visits lately as your children are busy taking care
of their families and responsibilities. As you look up from your
breakfast and Sunday paper your two children and their spouses enter the
kitchen. You are happy to see them but even though they are trying to
smile you can tell immediately that something is wrong. Your children
proceed to sit at the table with you and tell you that “they” have
decided that you will be going to live in a “nice” nursing home. They
tell you that they have noticed that you are becoming more confused and
that you are no longer able to manage your medications. You soon learn
that your doctor is even in on this “conspiracy” due to your last two
hospitalizations. They continue to explain that you need help and they
have found a “nice” facility where you can live. Your whole world has
just come crashing down on you!
You had just finally accepted the changes in your life with the loss
of your spouse and was becoming somewhat acclimated to your
apartment. You don’t want to live in a facility. You don’t want to
give up the rest of your independence, freedom, and dignity. You don’t
want to have a roommate. However, you know that this is inevitable
because you know that you can no longer manage alone and you don’t have
funds to arrange home services. And of course you can’t afford a
private room. You realize that you have no choice. You must share a
room with a total stranger. You must eat when, what and where someone
else chooses. You must sleep when someone else wants you to sleep. You
must wait for someone to help you because you are unable to help
yourself. Now, how does this make you feel? Afraid? Bitter? Angry?
Resentful? Alone? Depressed?
Activities can help. Have you ever thought that one hour spend in
quality leisure pursuits is one hour they don’t have time to think about
all of the things in their lives that didn’t go as planned? Have you
ever thought that one activity can take a person’s mind off of (for at
least that hour) the family member who never visits anymore? Have you
ever though that quality leisure pursuits offer more than just fun?
They can offer a sense of belonging. They can offer enjoyment,
fulfillment, and diversion. They can offer physical, cognitive,
spiritual and social stimulation. Now, would you want to living in
your current facility’s environment?
Each of our nursing home departments fit together to make the bigger
puzzle that I like to call Quality of Life. Without all of those pieces
(nursing, social services, administration, therapy, housekeeping,
laundry, maintenance, and activities) how can we truly provide Quality
of Life? The puzzle just isn’t complete without all of us. I encourage
those in administration to realize how important quality activities
really are to quality of life. We are not just fun and games. Please
be sure that your activities program is up to par. So many times, the
activities department is a “second thought” department. It is one of the
puzzle pieces that just isn’t adequately budgeted or staffed. Make
sure that you do everything you can to help activities remain an
“important piece of the puzzle”. Be sure that your activities
department is adequately staffed and budgeted. Also make sure that your
staff is adequately trained and that your director is truly qualified
and not just certified. Providing quality leisure time for your
residents can decrease falls and behaviors. Your activities department
can also be your best marketing tool so please provide them with the
necessary tools and resources to succeed.
Now, imagine…a facility where “Quality of Life” is of utmost
importance and everyone is treated with dignity and given the respect
they deserve regardless of their current situation! Imagine…this place
to be a Home where Family abounds! Imagine…smiling happy people tending
to your needs with compassion and dedication! Imagine…an Activities
program that truly meets your needs by providing the physical,
cognitive, spiritual and social stimulation you need in a FUN, CARING
and COMPASSIONATE environment! Now, I must once again ask, “Would you
be happy living in this environment”?
“Finally, someone who will listen to me”, greeted my
consciousness in the form of a soft tiny simple voice. This was all I
needed to hear to turn from my charting, put down my clipboard and turn
my attention to a person I will now call Dorothy. I was new to this
facility but had met Dorothy on several occasions. Now let me tell you
right off the bat, Dorothy was not your typical nursing home resident.
No, she was certainly unique. Dorothy was of course a millionaire and
was inclined to remind staff that she owned our nursing home and would
fire them on the spot if they didn’t work hard. She had also shared
with me during my first meeting with her that she had given birth to
many famous singers and actors over the years. And she had been “a good
mom” to all of them.
I squatted down to Dorothy to find out what had her “feathers
ruffled” on this particular day as I could tell that she was upset. She
looked right into my face, grabbed my hand and told me, “I went to the
bank and they told me I don’t have any money”. Of course relying on my
numerous years of experience in memory care I certainly didn’t tell
Dorothy that the business office was correct. I didn’t tell her that
there was no money in her resident trust. This would have only upset
her more. Instead I told her not to be upset with them because it had
probably been a computer error. I asked her to go with me and she
readily accepted. I took her into my activities office and told her I
would check the computer. I offered her a couple of pieces of chocolate
which she accepted quickly. As she placed the first Hershey’s Kiss in
her mouth her expression was of pure pleasure. I pulled up a document
on my desktop and pretended to look for her name, “Yep, Dorothy, it says
right here, you have millions in your account”. The smile that came
across her face was priceless. She was tickled pink. I told her “boy
you must have saved and saved for that money. I bet you don’t spend
money on junk. I bet you only buy things when you need them really
bad”. She nodded in agreement. I then asked her if she needed to buy
anything and she told me, “not really, I have what I need right now”. I
asked her if she needed the money or would rather keep it safe in the
bank. She told me “I just want a check to keep in my pocketbook so I
know that I have money”.
Of course this was an easy task, I made up a fake check on my
computer, signed it, put it in an envelope with her name on it and she
put it in her pocketbook. This of course had to be care planned but
became a common way for staff to re-direct Dorothy. Dorothy is not
always this easy to re-direct but knowing what makes her happy sure goes
a long way. I still remember our conversation after I wrote out that
first check and she secured it in her pocketbook. I asked her if she
liked the Kisses. She said, “Yes, I love silver bells”. I laughed as I
had never heard them called that before. I told her that sometimes
when I’m having a bad day, a piece of chocolate really makes things
better. She told me as sincerely and as lucidly as I am writing this
story, “no one around here knows that these moments is what matters most
to us”. I was completely shocked as this confused person had just
offered such words of wisdom. It was also shocking to me because I have
a free networking website for Activities and Memory Care Professionals
and yes you guessed it, the website is called Moments Matter. Here she
had just confirmed to me what many other residents over the years had
told me. Moments really do Matter.
I gave her a hug and told her to come see me anytime and that I would
try to keep “silver bells” so we could make “bad days better and
moments matter”. I have now introduced her to Dove Chocolate Promises.
After we have each enjoyed a chocolate I read the inspirational message
inside and we discuss what it means to us. Sometimes these share times
are serious and sometimes silly but meaningful all the same. This
special day began a very special friendship. Of course, her name isn’t
really Dorothy but I chose to call her this in my story because she once
told me that I look like a “Dorothy”. She finds me almost every day
and we spend quality time together, however, due to her dementia, she
just can’t remember my name. She is my very special friend and we have a
very unique friendship. Some days she is more lucid than others but no
matter what, she always knows I’m her friend and she can depend on me.
Sometimes that in itself is what makes, “Moments Matter”!
For many of the senior citizens in our facilities there is a feeling
of isolation and depression. They feel that they no longer have their
cherished personal belongings, their friends, their loved ones, their
freedom, their independence or even their dignity! The things they
worked for all of their lives have simply disappeared to be replaced by
unfamiliarity and a longing for their yester-years! Unfortunately for
many of them their memories may be all that they have left! And then of
course there may even come a point in their life where even those
memories that they have cherished for many years may begin to fade!
That is when only their Moments Matter! They have to take each moment
no matter how long or how short it is and make it count! That is what
“Quality of Life” truly means, right? It is during these “Moments” that
we are needed most! We are Activities Professionals. We believe deep
in our hearts and souls that “Activities Equals Quality of Life”.
As an Activities Professional with over 13 years of experience, I
truly feel that things must change. With the addition of more paperwork
and duties over the years, we have found that we have less and less
time to actually make those “Moments” count! Quality of Life as it
relates to leisure pursuits will never be a priority for facilities
until our policy makers require that it be a priority. An important
step in the right direction would be to have a required activities
staffing ratio. How much more could Activities Departments accomplish
if they were adequately staffed? How many behaviors and falls would
decrease if Activities Departments were adequately staffed? How much
more excitement and enjoyment would we see instead of withdrawal and
depression? Activities Professionals could truly make a difference
while making “Moments Matter” if only they had adequate staff to meet
the leisure needs of the residents that they serve. We could dry a
tear, offer a shoulder when needed and even hold the hand of a dying
soul if only we had more time. We could make dreams come true and make
wishes into realities, if we only adequate staffing in our departments.
I have a very special challenge for each and every one of you! I
would like you to take the “Moments Matter Challenge”. This means that I
want you to let go of those “Moments that Matter” for 5 days. This
means no type of leisure enjoyment whatsoever. In this I mean, that you
would eat your meals, sleep, take care of your ADL’s, take your
medications and that is basically all. You wouldn’t be able to watch
television, listen to music, use your computer, socialize with friends
or loved ones, play games, take nature walks, reminisce over an old
photograph, talk to someone on the phone, participate in spiritual
activities, read a book, pet your dog or cat, work a puzzle, keep up
with the news, etc. Now after the five days are over, tell me “what is
the point”? Without leisure enjoyment, our lives truly have no
quality! I tried this challenge and I failed. I wasn’t able to give up
my leisure enjoyment. And our residents shouldn’t have to either!
I remember several years ago, I was trying to come up with some new
ideas so I performed a simple activities survey in my facility. The
most interesting thing that I found with the survey was that the thing
the residents desired most besides Bingo (of course) was conversation.
They just want someone to talk to who would listen and not judge. We
somehow have to offer these “Moments”. We must find a way to give them
the time that they deserve. Our departments must be adequately staffed
so that we can provide Quality of Life through leisure and life
My name is Michael Ellenbogen. I am reaching out to you because I know you will make a difference in my life.
I am a writer. I am a husband. I am a father. I was a high level
manager. In 2008, I was diagnosed with Alzheimer’s disease after
struggling to get a diagnosis since my first symptoms at age 39. As one
of 5.4 million people living with this debilitating disease, I currently
live every day to make a difference. In fact, I am now an advocate for
the education and eradication of this disease.
Many people think Alzheimer’s disease affects our senior generation,
but they are so wrong. I started having symptoms at age 39. They refer
to people like me as having Young Onset Alzheimer’s Disease, or YOAD.
Not many people are even aware of YOAD. My wife, who is in the medical
field, was not even aware of this. The only people who seem to know
about it are the caregivers and the people affected, who will most
likely pass away within 8 – 10 years. A new person is diagnosed with
Alzheimer’s every 68 seconds. By 2050, that number will be every 33
seconds. As of today, there is NO cure or any way to slow its
progression. Even worse, this disease will bankrupt our health system if
we do not act now.
I am reaching out to you because you are one that can influence
others. I am prepared to speak to large groups, doctors, and the media;
give TV and radio interviews; and even present my own testimony in a
documentary. In addition, I have written a book about my struggles that I
would like to publish. It is geared toward patients, caregivers, family
members, and doctors dealing with this debilitating disease. I am 100
percent open about my condition because I want others to learn and
become educated about something that most people are not even aware of.
How can you help me? Get the word out. Become an advocate and
spokesperson in support of the disease. Attend and support Alzheimer’s
disease functions and pass it on to other colleagues in your field. You
see, I need all the help I can get because most who live with this
insidious affliction do not want others to know about it due to the
associated stigma. Sadly, many can no longer speak, write or even think
for themselves. This disease is not like Cancer, HIV or Heart disease.
Many of those survivors can speak for others who are sick.
Unfortunately, with Alzheimer’s, there are no survivors, and I need your
help quickly because my time is limited.
I implore you for your kindness and passion to help me make a
difference in the world. Let’s make Alzheimer’s end with me. Just think
of the lives and money we can save if that happens. Please feel free to
reach out to me so we can move forward. Thank you so very much for
hearing my story. I also pray that no one close to you is touched by
this debilitating disease.
2372 Phlox Court
Jamison, PA 18929
215-343-9395 Eastern time zone
For additional information about me, please check out my website.
P.S. Some statistics that you may find interesting:
• 5.4 million people are living with Alzheimer’s disease
• The average life span after diagnosis is anywhere from 4 – 8 years
• Someone develops the disease every 68 seconds. By 2050, it will be every 33 seconds.
• Alzheimer’s is the 6th leading cause of death. In 1998, it was the 12th leading cause. It has now doubled.
• Between 2000 and 2008, the number of Americans who died from
Alzheimer’s disease increased 66%, while deaths from other diseases
decreased -breast cancer by 3%; prostate cancer by 8%; heart disease by
13%; stroke 20%; and HIV by 29%.
• By 2050, individuals with Alzheimer’s will have cost Americans $20
trillion—including $15 trillion to Medicare and Medicaid, based on
The Health Outcomes, Planning, and Education—HOPE for Alzheimer’s Act
(S. 738 / H.R. 1386)
and Alzheimer’s Breakthrough Act H.R. 1897
Please help me in getting the word out on the link below over email . Thanks
The real truth about Alzheimer’s. Please check out my latest video
below. Please pass this around to all of your family, friends and
Co-workers. Please add the links to your favorite sites. Thanks
The Inside Scoop on Adult Day Services:
Joy after the Diagnosis of Alzheimer’s
GOLDEN GIRLS TRULY DO ROCK! Are you a Golden Girl? We can only hope
that as we age, we can keep some of our SPARK that makes us who we
are! So many of our elderly residents lose that “Spark”. Let’s do
everything we can to help them stay “Fiesty”! Golden Girls are so much
R.I.P. Sophia, Blanche and Dorothy!
Keep on Going Rose!