Volume 7, Issue 11
June 15, 2003
www.TheRibbon.com(Link: http://www.theribbon.com/ )
1104A Murfreesboro Pike
Nashville, TN 37217-1918
It's Father's Day. I don't know what to write about it today.
It brings up memories of my Mom who was both father and mother to
us as we were growing up. It also brings to my mind that I know
my children are suffering as they see their own father on a
journey into Dementia.
As I've started telling my children, The Best Present is
Your TIME. As their father journeys, he doesn't talk much, he
isn't interested in "gadgets" like he always was
before, he doesn't cook out anymore, he just isn't the same.
Time spent with him is what is important to him. He may be in a
bad mood, he may be in a happy mood, or he may doze off
occasionally but he knows that his children are there. He just
needs to know that even with his dementia his children love him
and can accept him as he is.
We all get busy with our families and caught up in life.
Take time out not just today, but as often as you can to spend
TIME with your Dad, Mom, or whomever it is that has Alzheimer's
or another Dementia in your family. You just can't imagine how
important it is to them and how it will change YOU for the
Now on to this week....I'm so excited!! This is the
week! Linda, PHOTOLJT, is coming to my house. My siblings and
sisters-in-law and a niece are all coming! What a wonderful
time we will have. I don't know if I will be able to wait until
the next issue to tell you the good news.
I may see if Karen has time to send out a special
announcement between now and then. I'm a person who likes to
share and this is just killing me having to keep it in.
Karen's husband, Kevin, has had back surgery this week.
Karen said he felt so much better after the surgery. Please
keep the two of them in your thoughts and prayers as Kevin
continues in his recovery.
Hugs to all,
Signs of Caregiver Stress
care of a loved one with Alzheimer's disease is very stressful.
Caregivers react to their stress individually. What follows is a
list of possible reactions. If you answer "yes" to any
of these questions, you're suffering caregiver distress. The more
yes answers, the closer you are to burning out. Take some time to
consider how you might take better care of yourself. Material
available throughout TAKING CARE...OF YOURSELF can help. Have you
withdrawn from close friends? Fewer visits? Shorter phone calls?
Routine refusals of invitations? The responsibilities of
caregiving almost always involve seeing less of acquaintances,
but if you've withdrawn from close friends, you're in distress.
Have you given up your favorite pastimes? The demands of caregiving always
mean less time for gardening, movies, hobbies, and other
activities you enjoyed before you became an Alzheimer's
caregiver. But if you've cut them out entirely--or almost
entirely--you're in distress.
feeling persistently blue, irritable, helpless, or hopeless?
These are classic symptoms of depression. Of course, taking care
of anyone with Alzheimer's disease is inherently depressing. It's
awful to watch a loved one decline, and have to take over
management of another person's life. But if you develop any of
these symptoms, you're in distress.
upsets make you cry? This is another symptom of depression. It's
natural to be moved to tears as you watch the affected individual
lose some long-cherished skill, for example, pie-baking or
woodworking. But if you find yourself weeping frequently over
inconsequential things, you're in distress.
upsets make you furious? Are you yelling at your loved one more
lately? Do you have increasing difficulty controlling your temper
with other people? It's natural to go over the edge if the
Alzheimer's sufferer breaks a precious family heirloom. But if
you fly off the handle when a friend arrives 15 minutes late for
a date, or when your children leave some dishes unwashed, or when
the person ahead of you in the supermarket express checkout line
has 11 items instead of the limit of 10, you're in distress.
gained or lost more than five pounds in the last few months?
Weight changes are another sign of depression-stress-burnout.
Do you have
trouble sleeping? Caring for a loved one with Alzheimer's disease
can cause periodic anxiety dreams, nightmares, and unwelcome
wake-ups in the wee hours. But if you experience frequent sleep
disturbances, you're in distress.
Do you feel
exhausted all the time? The demands of Alzheimer's caregiving are
exhausting. But if you frequently wake up feeling you can't get
out of bed despite a good night's sleep, you're in distress.
Do you seem
to be getting ill more often than you used to? The immune system
is what protects us from illness and helps us recover when we get
sick. Many things can impair immune function, among them:
fatigue, depression, and stress. It's natural for Alzheimer's
caregivers to catch an extra cold or two a year because of the
demands of caregiving. In fact, a studies show that flu shots
were less effective in Alzheimer's care givers because the stress
of caregiving had impaired their immune function (Science News,
4-13-96). But if you seem to be getting one illness after the
next, and if they linger longer than you think they should,
you're in distress.
recently developed any chronic health problems? These might
include: headaches, back or neck pain, stomach distress,
diarrhea, constipation, or heart palpitations, among others. It's
natural to experience any of these from time to time. But if they
become persistent, chances are you're in distress.
Do you ever
think: "I can't take this anymore."? It's natural to
react to life's daily pressures and absurdities by occasionally
feeling: "Get me out of here." But when escape
fantasies become frequent, you're in distress.
Signs of Caregiver Stress from Alzheimer's Outreach(Link: http://www.zarcrom.com/users/alzheimers/ca-07a.htm l )
TheRibbon.com at Alzheimer's TopSites
Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember(Link: http://new.topsitelists.com/bestsites/bpsibley/top sites.html )
As usual, I checked Top Sites this morning and The Ribbon is No
We are almost halfway though the year and we seem to hover
there. Six more months and things may change but it is a
tribute to all of you that we are there today. I just want you
all to know how very proud I am of all of you and of your
efforts, inspire of whatever other things go on in your lives.
I would also like to point out that the ONLY chat group listed in
the top 50 is our own GATHERING PLACE!!!! That says a lot about
the caliber of support that is available there.
Keep up the great work, gang.....and a pat on the back and a hug
Stages of Ability Decline & Behaviors Symptoms
by Eileen Driscoll R.N.
Here is a generalized list of the decline in abilities, as well as
some of the behavioral symptoms.
- Difficulty in telling a story completely.
- Difficulty in understanding a story or a joke.
- Difficulty in telling a story correctly.
- Loss of a train of thought in the middle of a sentence.
- Misuse of a word.
- Substituting one word for another.
- Losing track of money or check book balances.
- Misplacing belongings or losing them.
- Forgetfulness (more than normal).
- Inappropriate conversation.
- Confusion during meals.
- Wrong response to something said to him.
- Failure to recognize a familiar person or place.
- Confusion in unfamiliar situations.
- Confusion in familiar situations.
- Changes in manner of dress (unmatched clothing, no jacket when it is cold, etc.)
- Inability to find something when it is in its proper place.
- Taking longer that normal to Inability to complete a task.
- Changes in sleep pattern.
- Poor judgment in decision making.
- Unable to make a decision.
- Small mishaps with car (denting fender on way into garage, forgetting where car is parked).
- Accidents with car.
- Getting lost in car in familiar surroundings.
- Getting lost while walking in familiar surroundings.
- Unable to follow simple directions.
- Inappropriate mood changes.
- Flaccid facial appearance.
- Answers yes or no instead of discussing something when a question is put to him or her (can't remember the answer).
- Avoiding people outside the home.
- Sleeping more than usual.
- Withdrawing from activities.
- Wide mood swings.
- Poor coordination or balance.
- Change in appetite.
- Increase or decrease in sexual desires.
- Agitation for no apparent reason.
- Belligerency for no apparent reason.
- Inability to carry on a conversation.
- Repeating same statement over and over again.
- Disoriented as to time or place.
Early Middle Stage
- Some areas of the brain are impaired, others are not.
- The patient begins to accept the fact that he is sick.
- Accepts reassurance from the caregiver.
- May become depressed and withdrawn.
- Moves from one stage to another throughout the day.
- The patient is unaware of making errors, most of the time.
- Unaware of "filling in" with sounds instead of words.
- Unaware of losing a train of thought.
- Wandering, sometimes for hours, until tired.
- Loss of reasoning powers.
- Aware only of the present (now).
- Unaware of what happened yesterday.
- Unable to plan tomorrow.
- Can't sit still.
- Unaware of surroundings.
- Confusion that leads to anxiety.
- Asks the same question repeatedly
- Unable to retain or process information.
- Loss of short-term memory
- Unable to hold a conversation.
- Knows you are talking to him, butmay not be certain know who you are.
- A few brain pathways and personality traits remain intact.
- Is unable to verbalize thoughts or hold a conversation.
- Understands much of what is said but there is a loss of comprehension.
- Is unable to follow a simple request.
- Memory loss is more noticeable. The patient will ask questions similar to "Did we have lunch yet?"
- Judgment is poor; poor decision making increases.
- Disoriented as to time; merges past with present.
- Disoriented as to place.
- Spatial orientation is poor.
- Coordination is poor; has a wide gait, tendency to trip.
- Dexterity is poor.
- Anxiety level is elevated; is nervous; cries easily.
- May be unaware, aware and/or accepting of his own errors.
- Has difficulty in dressing, wears wrong clothes, wears layers of clothing.
- Has difficulty in bathing and grooming; needs assistance.
- Exhibits restlessness, wandering and purposeless walking.
- Uses table utensils improperly.
- Has slight difficulty chewing and swallowing.
- Saves useless items. Has auditory and visual hallucinations.
- Easily agitated, has wide mood swings.
- Exhibits repetitive behavior.
- Has bathroom accidents occasionally.
- Is unaware of surroundings.
- Does not recognize others.
- Is unaware of dangers and cannot be left alone.
- Has problems with eating and has to be fed.
- Is incontinent of urine and involuntary of stool.
- Is unable to do crafts or exercises
- Conversation is nil.
- Does not comprehend most of what you say.
- Has visual and auditory hallucinations.
- Eyes have a vacant look.
- Face has a flat look.
- Sits or lies down most of the time.
- Often rocks or does other repetitive motions.
- Coordination is poor and trips or falls easily.
- May refuse or is unable to walk or stand.
- Is not oriented to surroundings.
- May drool because the swallow reflex has diminished.
- Is unable to bathe or dress without assistance.
Alzheimer's Outreach, Where Information & Education Go Hand In Hand With Caregiving(Link: http://www.zarcrom.com/users/alzheimers/index1.htm l#map )
Editor's Note: If you have never gone to this website you
have missed so much. This is a site that I consider one of the
best out on the web. A word of caution though....please
bookmark this site to your Favorite Places before you start
reading because you will become so immersed in reading that you
are going to forget the time, and might log off before you've
saved it. It is that interesting and informative!!
so bouncing off the walls this week! There is so much good
news! Most of which I can share with you; but dog-gone-it,
there is still that one huge piece that has to wait until June
28th (and not it is not the fact that the 28th is my birthday)!
Jamie almost let the cat out of the bag last time with her
opening remarks! I don't blame her; it is about her and way
huge news. So my only clue for you for the huge news is to wait
for the June 28th edition of TheRibbon to see why we have been so
excited. I will tell you it will end up in an addition to the
website (UH OH Kevin...more work)!
have gotten word that TheRibbon is number one on the Alzheimer's
Top 10 List (Yeah team) and that The Gathering Place is listed at
20 in the list. As Karen said in her email this is absolutely
wonderful! Thank all of you for reading and chatting.
huge piece of news...The Gathering Place just turned 15,000 hits
on the website this week. This is so huge. You know we at
TheRibbon and The Gathering place have adopted the "pay it
forward" concept. I am sure you have seen the movie Pay It
Forward where the little boy receives an act of kindness and pays
it forward to three other folks. Well, if y'all stop and think
about this; with 15,000 hits we have paid it forward over 45,000
times. That is huge! Some of our visitors to The Gathering
Place are not return visitors, but that is ok as I am certain
they have gone out and told other folks what they learned and
helped them in their fight against Alzheimer's or helped
caregivers, regardless of the health issue they are caring for,
find the respite, help, love and strength they need to carry on!
you to my "hosties", Diane, Diana, Lorraine, and Marcia
for all their hard work. And thanks to all who read TheRibbon
and who have ventured into The Gathering Place to chat! It
takes all of you to make us shine! Thank you all so much!
tuned to your favorite caregiving newsletter for Jamie's huge
news! See ya in two weeks!
www.TheRibbon.com/GatheringPlace(Link: http://www.theribbon.com/GatherPlace/ )
Gathering of Friends
Just a brief note to remind you that if you are interested in
coming to GOF '03 you have until July 15th to send us a note.
This is not a commitment on your part. This is just to give us
an idea on how many we may expect so we can get discount pricing
on hotel. In your note please let us know how many will be
coming in your party and how many rooms you will need. We want
to get the best prices possible.
Send your information to GOF Info@aol.com (GOF Info@aol.com). We really look
forward to hearing from you!
Aloha Jamie I am so sorry what you have been going through with
family members passing on. I am also writing to thank you for
such a great review of my book. I have been trying to use just a
small portion of my book at the book signings and thanks to you I
do not have to write one. I' just use the one here. Thank you so
much. Aloha Jeanne L. Lee
Well, I have been reading the Ribbon since I found it nearly a
year ago. I was looking for any answer that I might find
because my dad was really beginning to lose his ability to
remember anything. He is hard of hearing which makes it worse to
try and communicate with him. I carried him to get him tested
for a hearing aid and when he realized, after the hearing test
,that was his only hope for being able to hear he was very angry
and left without any help. He insist that he does not have a
problem. that it is us,the family, that is the problem. He says
we are whispering to keep him from hearing. He broke his hip
last September and has been declining in his ability to get
around ever since. He is now on a walker for short distances and
in a wheel chair for longer ones. He refuses therapy that might
make it easier for him to get around. Says he can do " all
that stuff on his own". Sometime I think his anger is
because he is frustrated because he has always been a very good
hearted, kind, God fearing man. He and my mother have been
married 65 years and have never spent one night apart. My mother
is in excellent health but this is taking it's toll. My sister
and I go every day to help out any way we can. It is sad to think
about her health going bad trying to take care of him. She is
not at all interested in talking about outside help or other
solutions at this point. She believes she will be able to take
care of Dad until " Death do us part".
Thanks for just letting me get this off my chest. I really don't see a
solution but just putting it down helps.
God bless you!
I guess it's a little late now, for me, but oh...how I wishI
had known about The Ribbon years ago!
My dad died Dec. 25, 1999 - yes, Christmas Day - after a long,
awful struggle with Alzheimer's.
Now my mom has had a stroke, and I, the only child, have placed
her in a care facility. This happened in November 2002. Mom's
dementia is different than Dad's, andit has been easier to
handle -- she always knows me and my husband, and even though she
has trouble communicating she can make her wants and needs known.
It is so wonderful to know that there is a community of people
out there who are supporting each other through this trial of
having a parent with Alzheimer's. I just wanted to say God bless
Linda in Iowa
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