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The Ribbon - Care for Caregivers
Volume 7, Issue 11
June 15, 2003

1104A Murfreesboro Pike
PMB 114
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 better.

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

Taking 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 Have you withdrawn from close friends?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.

Are you 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.

Do minor 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.

Do minor 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.

Have you 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.

Have you 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 at Alzheimer's TopSites

Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember

Good Morning!

As usual, I checked Top Sites this morning and The Ribbon is No 1..again!!!!

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 to all!!!

The Ribbon

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.

Early Stage

  • 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.

Middle Stage

  • 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.

Middle Late

  • 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.

Late Stage

  • 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

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!!

Hey Gang!

Wow...I am 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)!

Our dear 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)!

You also 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.

My last 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!

So thank 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!

So stay tuned to your favorite caregiving newsletter for Jamie's huge news! See ya in two weeks!

Love Always,

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 We really look forward to hearing from you!

EMail Bag


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 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 you.

Linda in Iowa

We appreciate you taking the time to write in to us. We continue to let you know that this is YOUR newsletter. If you have something you wish to share just send it in...we would be more than happy to include it. Articles, poems, stories, information, questions, doesn't matter....we just want to share.

Those of you who receive The Ribbon via the USPS can send to the address at the top of the newsletter.

Hugs and Peace,

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