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Volume 7, Issue 16
August 24, 2003
www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918
Are you stuck in the 3 H days like we are? Hot, humid and hazy
are the words we are hearing every day. You go outside and it
feels like your whole body can't breathe. Whew! I am really
looking forward to Fall. Nick hasn't been doing too well the
last couple of weeks. His neuropathy from the diabetes (nerve
damage) and arthritis have had him hurting so bad. He takes
Celebrex and Neurontin for these but they have seemed to quit
working. He has taken Hydrocodone and that didn't help. The
doctor put him on Oxycontin and pretty much all that does is make
him sleep all the time. Wish us luck as we wean him back off
the Oxycontin and see what the doctor wants to try next. The
Oxycontin sure hasn't helped his memory. I'm hoping he will get
back to the way he was before this med. My youngest grandson
started kindergarten on Friday. It was a half day but for him
it was the most important day! He is now a school ager! My
daughter cried of course and my grandson told her "I'm
okay!" He has been so looking forward to starting
school. Now if the teacher will follow the advice my daughter
gave her he will do great. He had a habit of sitting with the
girls and conning them into doing his work for him. Needless to
say, my daughter told the teacher to seat him away from the
girls. (heehee)
I guess that's
about all from the home front for now. I'm very busy getting
things set up for GOF and I run around all the time with a smile
on my face. I'm so jazzed!
Hugs,
Jamie
A Change of Direction
Those of us who are affected by the course of Alzheimer's Disease know
all too well how this horrific illness can change or alter the
plans of a lifetime. Sometimes these changes can be caused by
the "normal" aging process and the realization that our
elderly family members need our help. Whichever is the case,
more and more families are being hard pressed to make momentous
decisions about their own life styles.
A friend recently told me of a coworker of hers, living and
working here in Florida, who is selling his home and relocating
to Wisconsin. Why there, I asked, thinking of the obvious;
cold, cruel winters and a different way of life for this young
couple. "Her parents are getting older and need help.
And they don't want to move here". So this young couple
will sell what they can, pack up what they can carry and move
1200 miles to be there for their loved ones.
I could not help but think of how brave this was.....to change
the course of your life to help another. And how sad. We have
become a transient society. No longer are we born, live and die
in the same neighborhood. We go where opportunity takes us,
where the weather is kinder, where our hearts long to be.
We make plans for the future and think fondly of family members
far away. Then the day comes when we realize that the love and
support of family is of the utmost importance and we must set our
own needs aside and do what must be done. We must be there when
loved ones need us.
I wonder how many of you have had to make that decision. I've
done it and I know firsthand how hard a decision that is to
make. Families make room in an already crowded home for
Grandma, children learn about caregiving, and an elderly person
learns, or tries to learn, how to adapt to a new environment.
The resources for help are sought out. Everyone changes
direction.
For those who put their own lives on hold while they reach out to
care for a loved one, we salute you. Know that those of us who
share the same path think of you as brave and loving. And we
know that the rewards, eventually, are many.
Karen
Attention!
For
all of our TheRibbon.com and The Gathering Place friends. When
you submit articles or items of interest to be published or
write emails to any of TheRibbon.com Staff, there are two things
we would like to ask you to do.
If you could please
type in the Subject Line: Information For TheRibbon, or
something relevant so it does not replicate spam that would be a
huge help. Linda@theribbon.com got a fantastic
email (details will be forthcoming) and she almost deleted it for
fear it might be spam. Had she deleted that email, a huge
opportunity would have been missed (we will tell you more when we
can pry it out of her).
Along that same line, if you could please put your information in the body of the
email instead of an attachment, that would be ever so much
appreciated.
In today's world of nasty computer
viruses and worm attacks, there is a possibility you may
unknowingly send an attachment that might have bitten your
computer. We immensely appreciate your help!
TheRibbon.com Staff
Life is a Bowl of Cherries
The immortal Erma Bombeck wrote a book titled If Life is a Bowl of Cherries What am I Doing in the Pits?
. Her humorous look at
life's ups and downs brings true meaning to the saying 'attitude
is everything'. For every milestone we celebrate in life whether
it is a marriage, the birth of a child, or a 50th wedding
anniversary we have chewed on a few pits along the way. It's the
foolish person who thinks there will never be a cloudy day or a
sleepless night, just ask a caregiver.
Caregivers are
remarkable people doing a job they never imagined: a job they
didn't volunteer for; a job no else wants. They came into their
roles unexpectedly with neither tools nor a handbook. They
continue to learn through trial and error and tears of
frustration. They learn to spit out the pits and enjoy the
cherries and are adept at savoring the flavor and hanging onto
the sweet memories.
Cherries
abound in the everyday life of a caregiver: Mom wearing her bra
over her blouse or a husband using the flower pot as a urinal.
These behaviors may sound shameful to you but are priceless
memories to caregivers. I have heard many a caregiver story and
am always heartened by their sense of wisdom and humor. Granted,
the humor of a situation isn't always realized until later.
During one of my workshops a woman in the group had a revelation
about the cause of her husband's inappropriate behavior. They had
traveled to a seaside resort for a vacation and were relaxing
from a long journey when he got up and started checking all the
door knobs. He opened the sliding door and walked out to the
balcony. She didn't think much of it until she heard a ruckus
from down below and saw him urinating over the railing! She now
understands that he had been looking for the bathroom. We laughed
with her at the mental image of her reaction but she said it
wasn't so funny when the police arrived! This brave woman could
have chewed on the pit of embarrassment but chose to spit it out
and enjoy the juicy fruit of humor instead.
A veteran
caregiver told me the story of her father. He had always been a
proud man in full control of every situation but this trait did
not make him a very warm person. Later in life he suffered from
Alzheimer's disease and in the final stage of dying he gave her a
gift she will never forget. By allowing her to feed him, comfort
him, and nurture him she felt a connection to him that she had
never felt before. The memory of it makes her smile and gives her
peace. Although the bitter pit of losing her father was
unpleasant to taste, the sweet nectar of the gift was, and still
is, delicious.
Not long ago I
lost a dear friend to cancer. She struggled hard to survive while
caring for her elderly mother. She had her good days and bad, but
always kept her sense of humor. While on the phone with me one
evening her mother came down the stairs clad in nothing but a
pair pantyhose. They had been packing to go to a wedding and her
mother wanted to know if the pantyhose would matched her outfit.
Her daughter didn't miss a beat, whistled at her and said,
"Yes, mother they're nude, they'll do just fine. We had a
good chuckle that evening and the memory still makes me laugh. My
friend could have focused on the pit of frustration of packing
for two and keeping Mom on track. Instead she chose to enjoy the
fruit of the moment for what is was and savor the sweet cherry of
absurdity.
A long
distance caregiver shared tales with me of her father's
adventures in a nursing home. His dementia had progressed to the
point where his wife could no longer care for him. He was still
quite social so settled in well. His wife visited often and on
one of these occasions witnessed a female resident pat him on the
behind. She jokingly said, "Don't do that, he's my
husband" to which her husband responded, "She can if
she wants to." His wife was momentarily taken aback then
chuckled at the thought that he could still enjoy the attention
of a woman. This clever woman could have bit hard on the pit of
hurt feelings and rejection but chose to enjoy the fruit of
nostalgia instead.
Life isn't
easy and attitude may not be everything but a positive attitude
helps us to see the good, embrace the moments, and enjoy the
fruits of life. So enjoy the bowl of cherries and don't spend a
lot of time chewing on pits - life is just too short.
Many Blessings ~ Mary
Mary C. Fridley RN, C is a Registered Nurse board certified in
gerontology with more than twenty years of experience in the
geriatric health field. She is a writer of advice columns and
articles for caregivers as well as a public speaker. Mary will be
glad to answer any questions you have and can be reached at P.O.
Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.
"Resistance to Care"
by Risa Levovsky
Caregiver-Journalist-Advocate for Successful Aging
www.alzheimers-tips.com
Although you may have your own ideas what type of physician is best for your loved
one, you may encounter some resistance on the part of other
direct caregivers.
Caregivers often choose a physician, and then cancel their appointments at the
last minute. This behavior may be frustrating and upsetting to
the entire family.
Here are some
of the reasons why caregivers may cancel doctor's appointments:
- Many caregivers are in severe denial that their loved one has
Alzheimer's disease. After a "probable" diagnosis is made,
they cancel future appointments hoping that the doctor made a
mistake.
- Many caregivers equate good physical health with good mental health.
Since they still see their loved one as physically healthy, they
assume that their memory will not get worse over time.
- Many caregivers don't want to burden the physician with the fact
that the person's behavior and memory loss have only declined
minimally.
- Many caregivers are unaware that major advances have been made in the
behavioral and medication interventions that will help people
with Alzheimer's disease and other forms of memory loss.
A caregiver shares some insight:
"Two years ago,
my husband was diagnosed with Mild Cognitive Impairment. Although
our neurologist recommends that we see him every six months, I
only take my husband to see him once a year. I am so afraid of
what the neurologist will say. I'd rather just wait until we
really need him."
A word to the wise:
This attitude prevents the person with memory loss from getting the care he/she
needs and deserves throughout the illness. In addition, it may
limit the physician from aggressively treating the symptoms as
they occur. Never wait until the last moment to obtain quality
care for yourself or a loved one!
White Wolf
Many, many moons ago, there
was a magnificent white wolf. She was a loyal and gentle
soul. She stood so tall and proud. To look at her you felt as
if her very essence reached out and touched you. The wolf
thought she pretty much had everything, but she still felt
lost. All she could do was wander around in the mist looking
for something that could make her feel whole.
The wolf wandered around for how long...she did not know. All she
knew was that it felt like a lifetime. One day, she allowed
herself to step out of the safety and cover of the mist. By
doing so, she stumbled on a tiny bird. The bird was so small
and defenseless it seemed. He had no wings. A bird that could
not fly. It didn't matter what he looked like, even his faults
didn't matter to the white wolf. She knew his essence and that
was all that mattered.
Time went by and they had great fun together. One day the white
wolf noticed a change in their friendship. She saw a sad,
distant look in the bird's eyes. She knew he couldn't hurt her
by saying goodbye. With her heart weighing heavily, she
wondered what she could do to make it easier on the tiny bird.
Going away she went to think on it. Then it came to her, "
a pair of wings!" It was then that she knew that she could
give him a pair of wings, and it suddenly dawned on her that
friendship was freedom.
She had seen the eagles fly, and watched the hawks soar. To be
given wings, his freedom, he could fly. It was with a heavy
heart that she gave her tiny friend the most valuable and
precious gift of all. Being ever so careful, ever so tender,
bending over to attach the wings, she kissed him on the beak and
wished him a safe flight.
Turning to walk back into the cover of the mist, she wiped at one
lone, rolling tear. It was then that she realized she had not
lost anything, but had gained. She still had her memories, they
were hers and hers alone to keep. With that she was able to
turn back and give the friend she had grown to love a huge
smile. She hoped in her heart he would find what he was looking
for. Her wish for him was that he find true love and happiness.
The White Wolf was wise beyond her years. She knew that to
really love is to be able to let go.
When I think of my Mom, I remember the person she was. I do not
think about the person she had become. My Mom loved me enough
to let me go seek my own way. I loved her enough to let her go
when it was time.
Diana
Dglennox1019
Helpful Links
BW Online | September 1, 2003 | "I Can't Remember"
This
is an excellent article about the strides in finding medication
for AD. I was particularly surprised to see the statement that
AD is the "number one cause of institutionalization" in
the US.
Gathering of Friends
T-Shirts, Paperwork and the Grand Ole Opry
Ok
gang, we need your help. Jamie needs to hear from you. I have
to say I am the biggest offender in not replying to emails (but
she does know I'm attending...snicker...snicker). Our Jamie has
been working her hiney off trying to make arrangements for our
huge respite weekend in Nashville...The Gathering Of Friends
2003!
And do you know, that Jamie is so nice she won't come right out and
say it, but only a few folks have come right out and said they
are attending. There have been numerous emails sent asking for
information: where you are from for name tags, what shirt sizes
you might need, if you want to go to the Grand Old Opry
(need $24 a person in advance for that one), or even the
simple fact of going online to e-sign the waiver for attending
the walk.
Gang, we need to help our Jamie, or
whomever that might send an email regarding GOF '03 information,
post hastisly. Time is now drawing near! Counts and
information are now becoming crucial! Please, oh please, oh
please, respond as soon as you get your emails. Oh...and by
the way...please put something in the Subject Line with GOF '03!
Thanks gang! I knew you would understand.
Love Always,
Linda@theribbon.com
Email Bag
I love receiving the ribbon. My friend sent it to me. My husband has the
alz. I have three monitors over the house and i`m writing to say
they are great. Thank you for the ribbon. And my sympathy to
all who has lost there loved one. Coping in FL.
ewalls
Hello to all,
I haven't written
to The Ribbon in a long time, but I have been reading it
and as always, I appreciate the great information that you
provide. I also want to thank all of you that are involved in
putting the Ribbon together and getting it sent out. You have
done a great job.
Those of you that know me, know that
I have been around formany years now. My husband was
diagnosed with EOAD in 1995. He is 56 now and (very
unexpectedly and unwillingly), I had to make the decision to
place him in a facility. He became combative and impossible to
care for. I dealt with it for a few months, trying to keep
everything together and thinking that I was suppose to do the
caregiving. I believed that no one could love and care for him
as I did.
During that time, I felt I was living in a
nightmare. I have never actually admitted this, only to a few
close friends, but I did entertain the thought of
suicide. My faith in the Lord gave me strength and wisdom to
get through the crises. I am living proof that it can be
done. I do feel that I did my best, which wasn't perfect by
any means, but it was my best. In my head and in my heart, I
had always planned to care for him at home, but as we know with
Alzheimer's, things do change and sometimes it can be very sudden
and not at all what we expect.
It has been over a year now since
he has not lived here at home. He is being taken care of much
better than I can do. There are many times when I wish that I
could bring him home. I have to stop and think of how I could
care for him properly. He is in the late stages and can do
nothing for himself. We have been married for 35 years and my
heart still aches to have him here.
I wanted to let you all know
that I understand the stress, frustration and pain that you are
going through, and as you know by now, there are many others
going through the same things that you are. You can make
some wonderful friends and obtain an over-whelming amount of
info in the chat room, The Gathering Place. You will
meet friends who will listen, advise, and love you. Some of
you probably go to a live support group, and those groups are
wonderful. But, the chat room is a place you can go to almost
every night and find someone there who will listen and try to
help. There are set rules to handle some situations,
but the chat room will provide you with great information and
ideas, some alternative, that come from real and personal life
experiences.
I want to offer my sympathy to those who
have already lost loved ones. Finally, I realize that
there can be a blessing from the death of a loved one with
Alzheimer's. Although we grieve and mourn for their loss, we
know they are not sick anymore, not confused, not scared, but at
peace and in a better place. I could never talk about my
husband dying until a few months ago, and not understanding, I
didn't want to hear about it from anyone else. That is because
his quality of life, from my point of view, was still
"ok". But who am I to judge? I have no idea what he
thinks now. My point is that I have accepted the possibility
of death and that is a huge step for me.
It has been a
while since I have been to the chat room. I felt I didn't have
anything to offer anyone and my pain was so severe I couldn't
share it. We all handle these things inour own way and
inour own time. I am getting my life back together, slowly but
surely, and I hope that I can eventually be helpful to some of
you. I don't have all the answers, but I can listen and
understand your feelings. I want to thank my wonderful
onlinefriends thatI have made through the years. Many of
them I have met in person. Thank you for your love, your
support, your kindness, and your sharing. And most of all,
thank you for your friendship and your prayers. I
pray that you all will have wisdom, strength, and patience
throughout your journey with Alz. Keep your faith and you will
survive.
Love, hugs, and prayers,
Sharon
We never know where our caregiving journey will take us. Even
though we are weary and worn at the end, it is my prayer that
caregiving has made us each a better, stronger, and more
compassionate person.
Peace and Hugs,
Jamie and Karen
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