November 25, 1999
a great day. Good food, good times, and time spent with our
families enjoying traditions passed on from year to year.
Sometimes there comes a time in our lives as caregivers when we
wonder, what is there to give thanks for? After our feature
article you will find out from the responses we received for this
Thanksgiving issue. Maybe if you are feeling thankless at this
time, something in what the others have written will strike a
forgotten spark inside you.
Karen and I wish to give thanks to you our readers for your
support, your input, and all the kind words you have given us
over the last almost 2 years. Without you, there would be no
newsletter. Thank you, all of you.
Enhancing Life For
the Older Adult with Alzheimer's Disease or Other Dementias: Some
by Stephanie Zeman RN MSN
Most people with AD are fairly mobile and able to participate in
some kind of activity for at least a few years. Gifts which
promote activities have the potential to improve the person's
quality of life, provided that are carefully selected to match
the functional level of the person with AD..
The following suggestion have been divided into gifts for early
stage dementia, the moderately impaired, and the severely
impaired. These are only a handful of ideas from which to
Early Alzheimer's and
Most individuals at this stage are: able to communicate fairly
well, quite active and need to be engaged in some activity 60% of
the day. They are aware of their condition and struggle to remain
independent. Gifts that enhance independence or encourage
activity are excellent choices..
Games: Simple, but familiar games, such as dominos, large
numbered cards, an invitation to a Bingo game( be prepared to
watch over your guest's card). Low priced items, but they have
potential for quite a bit of enjoyment.
Tickets to a concert, musical, circus. Ball games can also be
excellent choices. Any event without a plot to follow is a good
choice. For safety either take the person or send along a
Taxi charge account for transportation to visit friends (
coordinate plans on both sides of the trip). This gives the
person a sense of freedom and independence when they can no
Old family photographs highlighting the major events in the
person's life. Useful and enjoyable throughout the course of
Fruit basket or flowers are always a welcome gift.
For the Moderately
Persons with moderate stage AD will have some difficulty
communicating, will need help dressing, and be unable to manage
most daily activities without supervision or help. Wandering is
often seen in this group. Exercise is important but attention
spans varies so activities are best limited to fifteen minutes..
Simple to manage clothing. Tube socks are easy to put on
correctly. Shoes are available with Velcro closures since
shoelaces can be a problem. Jumpsuits with back closures for
those with incontinence problems are very good choices.
Materials to sort. Sorting is an activity that most people with
AD can enjoy. Try pennies and penny folders, a bag of buttons, or
Music. Especially the old songs often can bring back wonderful
memories. Try to locate stores that have remakes of old albums.
Also religious music or music of their country of birth can bring
Tape Church or religious services. Many people with dementia can
no longer attend religious services. This can bring a great
source of comfort.
Short car trips. See Christmas lights, flowers, seasonal changes.
The Severely Impaired
At this level the person has almost no understanding of the
spoken word and is unable to speak coherently. Attention span is
very short. In this stage of the disease people do not have the
capacity to deal with anything but the simplest of tasks. Often
times their long term memory takes them into the back and they
may believe they are living in the home or community of their
Photo albums, family pictures, memory books. A gather of pictures
from the persons past can help if any memory is still intact.
Pet visits. Most people with late dementia still enjoy the visits
of dogs, cats, and other small animal.
Recordings of old music
Cuddle animals or even a lifelike cuddly baby doll.
Video tapes with pleasant sights such as garden, fish tanks and
sounds can be soothing.
Hand/body lotions Most people with late stage Ad still derive
comfort from touch. Try giving a hand or body massage. ( Do not
massage legs, as blood clots can form in this population.
These are just a few ideas that may bring pleasure to those with
AD during the holidays and on special occasions.
Stephanie Zeman has a Masters in Nursing, specializing in long
term care and gerontology in since 1961. She has developed
Geriatric Education Resources in 1987 to provide educational
workshops consultations and support for family caregivers. This
article in an excerpt from her book: Gift Givers Guide. For more
information about this guide she can be reached at Geriatric
Resources PO Box 7144 Fairfax Station 22039-7144
Reprinted with permission from
Taylor Austin Coordinator of Alzheimer's Outreach ©
Outreach, Where Info & Education Go Hand In Hand With
Karen and Jamie:
Thank you again for all your work on The Ribbon. You asked for
short notes for a Thanksgiving issue so I will contribute my two
The upcoming holidays may well be difficult for some of the
afflicted and their caregivers. But let us remember it is a time
for family and a time to remember better times. I wrote a short
poem which tells about the coming and changing season, and all
those good things we love to eat; however, it also speaks of the
real reason for Thanksgiving which is to remember Him who
provides all things for us. Even in our times of strife and grief
He is as close to us as our knees are to the floor. So let us
celebrate with our families and remember who gave them to us in
the first place.
May God bless all of you richly.
In His Great Love
Doug and Ann Thompson
By Doug K. Thompson
Wild leaves that the cold wind have blown.
Now to be covered in snow white as a gown.
People hurrying as the fall chill comes down.
Busy to buy for the holiday all about town.
Pumpkins for pie, a delight to the eye.
Turkey with all trimmings fit for our meat.
Fresh candied yams, oh my, how sweat.
Cranberry sauce so tart the palate to greet.
Honied ham with sauce just for a treat.
Tis a day to show how we love to eat.
Together we come the family complete.
First to worship, a Thanksgiving for all.
We ask for His blessings, to prayer we retreat.
All things He supplies for our banquet hall.
Come, O come, all thankful people come with hymn.
Join in all the good blessings and come let us sing.
With thankful hearts a song of grateful praise to Him.
Living in a land of plenty our thanksgiving we bring.
Thanksgiving a time for family tis true.
Let's come together though many or few.
A time for each family to remember anew.
Thankful for the year we've been through.
I am very
blessed to be able to take care of my mom.She gave her whole life
to take care of me after my dad was killed in a car accident and
my sister died at 3mo.old . She has always been there for me and
even now with AD, she still worries about me. I just thank God
that i can take care of her and so far, I do not have to put her
in a home.But best of all, I have my salvation to be thankful for
and also know that my mom is saved and I Will see her again when
the Lord comes to take her home.
Have a wonderful thanksgiving to all of you.
I wrote this a while back and thought perhaps it shows some
things to be thankful for.
I asked God to give me new eyes, or at least a different outlook.
I asked God to let me look at the old people in my life and
See something besides feebleness and frailty and decline.
I asked God to let me see through their eyes
To find what still gives pleasure and how life appears to them.
What are the things that know no boundaries of age or condition?
Is the glorious blue of a summer sky less glorious after 80?
Does a vee of flying geese appear less magical?
Does the sound of a favorite melody sound less heartwarming?
Does the touch of a familiar hand feel less comforting?
Age brings so many losses,
It must have some reward.
They live with constant aches and pains of joints long overused.
They lose little details of life with brains no longer sharp at keeping
Information organized and easily called up.
They no longer have the energy for large projects.
Yet all those years of living must give perspective
To lives they live now,
Slightly out of synch with the rest of the world.
Where current events information comes from Oprah
And the parameters of one's world close in to the doctor's office
And the drug store and the grocery store and a holiday visit at a relative's house.
When knowing that statistically your days are numbered,
Do you live each one more fully?
Are you more appreciative of the minutes and events?
Do you consider life goals unmet, or do you change the goals?
And who among us knows the number of his days?
Faith that there is more than just an earthly life
Brings comfort at any age.
It is impossible to know the mind and soul of another
Without walking in his shoes or his life for a good while.
They, looking back, say, "Ah, to be fifty again!"
I, looking back, say, "Ah, to be twenty again!"
So, life is all perspective and vantagepoint,
And the world moves at its own steady pace
And we either keep up or find a corner in which to stay.
There must be sweetness to be found at all ages,
Else why go on?
So, Lord, when I look at my father hunched in his chair,
Sometimes not knowing me, and infrequently knowing what day it is,
Help me to know that he finds sweetness and pleasure and joy
Somewhere in his existence,
Even if it's a place in his memory that only he can visit.
And that my father-in-law who can neither see nor hear well,
Finds good things in his life, too, with an active mind trapped in
A body that no longer serves him.
And that the mothers who live with pain and worry about their husbands
Do find joy in their children's and grandchildren's successes and accomplishments.
And that the demands they make are a small price to pay.
Let them go softly, Lord, without suffering pain and indignity.
Let them go willingly, Lord, to whatever place they've chosen.
Let them go knowing they are loved and will be remembered always
Until their children and grandchildren join them.
And until then, Lord, give them the sweetness of little things,
The joys of day to day pleasures.
And lighten my heart knowing you watch over them and give them
their own kinds of joy.
I would like to give thanks for two things. I would like to thank
my sister, Lisa, for being the primary caregiver to my Dad. She
is enduring so many things in her life in addition to taking care
of Dad. She is brave and patient and generous. I would next like
to give thanks for all the support that is available now - there
are websites to read and people to talk to, in person and online
that give us information and make us feel less alone. Happy
Thanksgiving to all!
In Passing: Those We Must Remember
This last week, we lost my
mother. She had Alzheimers for at least the last 9 years. I was
not the primary caregiver, my father and sister were and they
kept her at home and cared for her with love and gave her dignity.
She was a beautiful woman who taught us all our life lessons when
we were growing up ,and continued to teach us life lessons even
though she could not speak, until the day she died. This nasty
disease robs us of loved ones and breaks your heart slowly as you
see them slipping away. Even though she was sick for so long, our
memories are those of happier times. We had a beautiful service
that was a true celebration of her life, and she will always be
loved and missed. Even though I did not participate in the chats,
I did sometimes go there. Your news letter, and all the caring
people did give me support and I thank you for that. I do wish to
have my name removed from the newsletter. Thanks for all that you
do. Vickie O'Neil
My Dear Friends,
Have I told you lately how dear the two of you are to me and how
this newsletter has been my savior since the first issue. First
of all I want to say that through the information you have
provided, with your on hands approach, and the experience of
others I feel that this information you print is much more
informative than anything I have ever bought in a book. Believe
me when I say that my library on this disease is quite
comprehensive too. I have gone back and printed every single
issue. Have taken them to have them copied. bring them home,
separate the years, put them in a hard back binder for each year
and give them to those in the local group who are still
struggling with their loved ones at home. As the new letters come
on line I print them out and send the updates.
I have been having a difficult time the past few months
struggling with a decision that is impossible to make. This
disease is slowly killing me as you well know and I have been
advised that its time for me to let go and make a life for myself
away from the nursing home. The answer came to me yesterday as I
picked him up to take him for his regular check up. I arrived at
Happy Harbor at 1:00 as expected to pick him up. There has been
such a drastic decline since the night they yanked him out of bed
and took him to the ER room for absolutely nothing. I had fired
the Psychiatrist on a Saturday night after she had lied to me
about slowly moving around his medications. She had put him in
total drug withdrawal and he had absolutely nothing for the Sun
Downing. When I questioned the home Psychologist and the Social
Worker I was told how much better he was, even though this isn't
what I was seeing. I was asking the wrong people. I should have
asked those who observed him on a daily basis, the nurses. The
Saturday night I dismissed her as a treating Physician he had
taken all of the things out of his closet and thrown them all the
way up the hall from his room to the nurses station. Only after
me going down there was the staff able to calm him. The previous
weeks had consisted of him packing his clothing, dirty and clean
in anything he could find to move. He had been walking the halls
for weeks crying for his mother. He hadn't had any sleep in weeks.
On Monday I took him back to our family Physician and said No
More psychotic drugs ever again and he was put back on his
regular medication. The medication was started on Tuesday. That
night for the first time in weeks was he able to sleep. When he
went to bed that night he turned the lock on the door as he
always did but every room at that facility has the same lock and
there are approximately 60 rooms. There should have been 60 keys
as they were all the same, but when the nurse needed to get into
the room to check the other patient john was unresponsive and
wouldn't get up and unlock the door. Did I mention that they
couldn't find even one key? Well, he hadn't slept in weeks and
was totally exhausted. They proceeded to go outside to the window
which is at the head of his bed and beat and scratch on the
screen until they got him up. At this point he had soiled himself.
What AZ patient wouldn't have. They are terrified of anything out
of the normal anyway. Then the nurse proceeds to think that
because he had soiled himself he had had a seizure of some kind.
They got him up, dressed him and took him to the ER here in
Baytown. At 1:30 in the morning my phone rang but when the
answering machine came on there wasn't a message left. I got up,
looked at caller ID to see who would be calling so late, saw that
it was HH, called to ask what was going on, only to be told that
J had been transported to ER. The hospital is five minutes from
my house so I dressed and drove there as quickly as I could
imaging the worst. When I got there, John was sitting on the end
of the bed with this confused look on his face. All he knew was
that they dressed him and here he was. I stayed there all night,
they did a cat scan, they did every test known to man, put him in
an observation room and the next afternoon wanted to send him
back to HH in an ambulance. I told them in no uncertain terms
what they could do with their ambulance. I drove him back and
that was the most expensive nights sleep anyone ever had on the
taxpayers money. Little did I know until I got the EOB from
Medicare last week just how expensive it was. I literally pitched
a fit. I told the DON at the home that she didn't have one nurse
on staff that knew even a fraction of what I did about this
disease and this is what an incompetent nurse had caused. The
bill was approximately $8,000. We aren't even talking about the
trauma at this point that this caused John. This little escapade
caused his latest decline. I was down there last week and I went
into her office, dragged her to the door and told her to take a
good look at what the incompetence of one nurse had caused my
husband. There he stood, this man who always prided himself on
his appearance, wearing a wrinkled shirt, shirttail outside his
pants, unshaven and no teeth in his mouth. Did I cry? Yes, I
cried, have cried an ocean of tears since this happened. Has it
changed anything? Of course not. He is now truly a small child
and I am the mother who he clings to as all small children cling
to their mothers. When we got to the doctors office yesterday we
had both cried the entire 17 miles from La Porte to Baytown. His
tears because he can't understand what is happening to him and
mine as I struggled to explain in a way that his limited mind
could understand. I have been told that I have to let go or I am
going under. My question to the board today was this. Could you
walk away from your small child? When you are the only thing in
their world that is familiar, how can you say that I have to let
go? Well, Girls I need some help on this one.
What is Vascular Dementia?
Do you have any information on it?
have a good weekend,
in re: Something To Make You Think in last issue
I wanted to comment on this
story. Interestingly enough, I first saw it in a complete volume
of the Brothers Grimm Fairy Tales. This tale has to be atleast
150 years old if not older. It makes my heart happy to know that
long ago people were not ruled only by the will to survive, but
the will to love and have their beloved elders treated well.
The Ribbon is a big help. My husband is getting worse fast. It
helps to know sort of what to expect as the dementia progresses.
I would love to know how others deal with those who are
functional but want their spouses to stay with them every minute.
If only we had a chance to
do things differently. Caregivers have that chance. Please try to
realize that your loved one with dementia does not know that he
is such a burden, his memory is no longer functioning and he can't
help the things he says or does. I am having a guilt trip as my
patience wore out and I became a nasty person to my dear husband.
I wish I had a second chance to let him know that it is OK. He
was only in the hospital two days when he went into a coma. I
never had the chance to say I was sorry for the way I carried on.
So sit back and try to understand you loved one and remember they
wouldn't be that way if they could help it. The guild doesn't go
away, you have to live with it. You have time to change and
please try. I would like to hear from anyone who tries to cope. I
know it is difficult but it can be done. I only wish I had the
Thanksgiving To All Of You
Hugs and Peace,
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