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The Ribbon - Care for Caregivers
Volume 2, Issue 7
April 16, 1999

First a quick note to let you all know that I didn't lose my mind the last issue. I used my Wingding, and Mini Pics fonts to make the Easter issue a little interesting. Somehow in the mailing the fonts got lost in cyberspace so all you saw were just letters instead of bunnies, chicks, eggs, and Easter baskets. Oh well, I tried.


The Big Question: Should We Tell the Patient?

Both health care professionals and family members are often faced with the dilemma of what to tell the patient who is suspected of having Alzheimer disease. This issue is a difficult one for many reasons. Being the bearer of bad news is an unpleasant task in and of itself. However, this distasteful task is further complicated by the lack of a positive diagnosis of Alzheimer disease without a biopsy, which is rarely performed. While this situation may change as new diagnostic techniques are developed and old techniques are refined, for the time being, a definite diagnosis of Alzheimer disease cannot be made, except upon autopsy. Consequently, we are faced with a diagnosis which must be stated somewhat tentatively, and the uncertainty accompanying the diagnosis is something that the health care professional, the family and the patient must deal and live with. It should be noted that a diagnosis of Alzheimer disease can be made with more confidence in some cases than in others, although this does not ultimately make telling the patient any easier.

So what does one do if a patient asks what his or her diagnosis is? What are the issues involved in one's response? First, informing a patient that he or she may have Alzheimer disease can understandably induce great distress, unless the patient's disease is so advanced and comprehension so compromised that the implications of the diagnosis cannot be understood. Because of the difficulties inherent in accurately diagnosing the disease, there is always the risk that some individuals may be told they have Alzheimer disease when, in fact, they do not. The needless distress which can result from this situation is something all hope to avoid. Another issue which is constantly of concern is that of possible suicide. Many of us have made the comment, knowing what we do about Alzheimer disease, that we would not want to continue living if we had the disease. We therefore have concerns that if our patients or loved ones found out they have Alzheimer disease, they might make suicide attempts. This is also of great concern to all involved. Nonetheless, despite this risk and the distress patients may experience as a result of being told their diagnosis, there are many compelling reasons for sharing this information with patients, if they ask for it and want it.

It has often been noted in clinical descriptions of Alzheimer disease patients, that they will maintain some insight into their declining functions, such as memory loss, especially in the early stages of the disease. As a result, most often patients realize that "something is wrong". Left alone to manufacture the reason for their self-noted cognitive and behaviourial changes, many patients will assume the worst anyway, and will be left with their self-diagnosis along with the impression that their illness must be too bad to even talk about since the topic is so blatantly avoided. During such situations, patients are also at risk for suicide. Consequently, in addition to feeling alone and distressed, these individuals may miss out on opportunities to obtain the additional emotional and social support which they will need in the months and years ahead. Furthermore, by not responding to patients' request for their diagnosis and prognosis, one is denying them the privilege of completing important work , legal documents, and where possible, planning ahead for their own care. Of course, a patient's ability to perform such tasks will depend on his or her functional capacity and the current severity of the illness.

Each individual case is unique in some aspects, and there are grave dangers in applying a blanket rule to govern all situations and all patients. Nonetheless, in most cases where the patient requests the information, it may be appropriate to provide the patient with the diagnosis. However, imparting diagnosis alone is not sufficient.

It may also be important to include information on the expected course of the disease, any limitations on the accuracy of the diagnosis, the importance of continued assessment and health care, etc. Furthermore, there should be attempts to facilitate the patient's and family's use of resources available to them. A thoughtful and sensitive approach to the patients' needs and not just our own fears over how they may react, should guide our responses. There are patients who do not want to know what is wrong with them, but in our experience this is rare. Providing accurate information may actually lessen the distress and possible suicide many people fear in Alzheimer patients. The decision is not an easy one and may require professional consultation. Note: The view here is only one of many different approaches to this question and represents the experience and views of the authors. They realize that other professionals may feel very differently about this topic and recognize that there is no "best answer" for all cases.

Connie L. Dessonville, Ph.D.
Robin Morris, Ph.D.
Reprinted from: ADRDA Newsletter, Seattle, WA, April, 1985.


Should You Tell Your Spouse?

This question was put to people who have had to face the issue themselves. Their responses may help in giving direction to others. A clear majority answered the question with a definite "no". The explanations for this answer included: "No use piling on misery," "It is pointless," "Don't want to spoil the time left," "Knowing the diagnosis can make a person depressed and more unhappy".

A minority group were less certain of the answer. Their replies would depend on the circumstances, such as the type of person involved, the relationship that had existed between partners and the stage at which the disease was diagnosed. An honest answer may be the only way to reply to a direct question from the person afflicted. A thank you to the readers who responded to the question and to the members of the long term support group who discussed it -- all of these people have had to face the question themselves and we appreciate their help in giving direction to others.

An additional thought: One of our local professional caregivers considers that the question is not as critical as some families imagine. By the time a diagnosis is made, individuals are usually not capable of retaining new information for any length of time. While the implications of the diagnosis are a tremendous burden for the family, they may be much less for the person with Alzheimer.


Repetitive Actions

  • Causes and Symptoms:
    • side effects of medication (particularly repetitive movements like sticking one's tongue in and out)
    • physical changes in the brain
    • memory loss - the person may not have the ability to remember they are repeating themselves
    • misinterpret sounds or sights, causing anxiety
    • separation from a loved one
    • misunderstanding of what is happening
    • inability to express needs such as hunger or having to go to the bathroom
    • trying to express an emotion such as fear, anger or insecurity

     

  • Coping Strategies:
    • have a medical exam done to check medications, and check for illness or pain
    • ignore the behaviour if the person is showing no signs of stress or agitation
    • stay calm and look for the reason behind the repetitive action
    • distract the person with a favourite activity or food
    • find a way to fit the repetitive action into the normal household chores e.g. dusting
    • if the person is repeating a question, write down your answer, speak more slowly, try to simplify your answer, respond to the emotion instead of the question
    • if the person is repeating a movement, occupy the person's hand with a doll, stuffed animal or nerf ball
    • reassure with a gentle touch or hug when a verbal response does not help
    • use simple written reminders with people who can still read - e.g. use a large sign that says "We will eat at 5:30 p.m."
    • use pictures to replace written reminders when ability to read is lost - e.g. a picture of a toilet might replace a sign that says "toilet" on the bathroom door
    • don't discuss plans with the person until just prior to an event if this causes repeated questions and agitation
    • be alert for events or objects in the home that trigger repetitive behaviour - e.g. when the person sees coats, hats, and gloves he may react by repeating statements about going home
    • sometimes you need to walk away and take time for yourself; take a bath or do some relaxation

Alzheimer Society of Ottawa-Carleton - Caregiving


Chat Schedule Update

From BHostSTS (E-Mail or IM for directions)

AOL, Alz chat= Tues at 8 @ Positive Reflections
AOL, elderly care chat = Tues at 9 @ Personal Empowerment
AARP Caregiving Chat = Wed at 8:30
AOL Empowering Caregivers Chat = Thurs at 8 @ Mutual Support Room
Web Alz chat = Thurs at 9 on web @ BetterHealth.com
AOL Alz chat = Fri at 10 @ Health Conference
All times are ET


In Passing: Those We Must Remember

From Csober

HELLO ALL,
JUST AFTER LOSING MY GLEN ON JAN 4TH .. I HAD JUST BEGAN TO FEEL AGAIN .. WHEN ON THE 9TH OF MARCH I AM CALLED TO HEAR MY SON OF 31 WHO WAS MANIC DEPRESSIVE HAD BEEN KILLED BY 4 CANISTERS OF TEAR GAS WHILE IN HIS APT. BECAUSE HE DID NOT WANT TO GO OUT.. HIS LANDLORD AND GIRLFRIEND SAID HE HAD A GUN .... HE WAS AFRAID OF GUNS AND THEY FOUND NO GUN... NONE THE LESS HE IS DEAD... AT 31

HOW MUCH IS A PERSON TO TAKE IN THIS LIFE I AM NOT SURE.. I FELT I WAS DOING SOMETHING GOOD AND YET..
THANKS FOR LISTENING CHARLENE


E-Mail Box

From Mjl0515

HI,

JUST FINISHED READING THE RIBBON VOL. 2 E #6. ONCE AGAIN IT HELPED ME REALIZE WE ARE NOT ALONE AND HOW WE ALL STRUGGLE THRU THIS DISEASE THAT STEALS THE MIND OF OUR LOVED ONE. I WAS DEEPLY TOUCHED BY THE ARTICLE ON THE FATHER-IN-LAW. FOR MY FATHER-IN-LAW IS WELL INTO THE MID-STAGE AND IT IS TAKING A TOLL ON MY 75 YEAR OLD MOTHER IN LAW. SOMEHOW I TRY TO LOOK PASS HIS DISEASE AND JUST ENJOY THE QUICK SMILE HE GIVES ME AS I WALK IN THE HOUSE. MY ONLY HOPE IS THAT WE WILL BE ABLE TO KEEP HIM AT HOME AS LONG AS WE CAN. ALTHOUGH MY HUSBAND AND I HELP OUT WHEN WE CAN I FEEL WE FALL SO SHORT IN GIVING MY MOTHER IN LAW THE TIME SHE DESERVE'S TO GO BY HERSELF AND GET AWAY. I WISH I COULD FIND MORE INFO TO HELP HER FOR SHE REALLY GETS DEPRESSED OVER HER SITUATION AND FEELS LIKE A PRISONER OF HER OWN HOME. THEN SHE TENDS TO GET UPSET WITH MY FATHER IN LAW AND SPEAKS TO HIM IN ANGER AND THEN HE IN TURN GETS MAD AND WILL NOT COOPERATE WITH HER. I SEE HER SIDE BUT JUST WISH I COULD GET HER TO UNDERSTAND AND GO ALONG WITH HIM. SHE TALKS ABOUT HIM AS IF HE WAS NOT IN THE ROOM ALOT. SUPPORT GROUPS JUST DON'T SEEM TO HELP BUT WE DO PARTICIPATE IN THEM. THE GROUP IS SMALL IN NUMBER BUT WE KEEP GOING. MY PRAYERS ARE WITH ALL OF YOU CAREGIVERS AND MOST OF ALL THE VICTIM WHO WAS ROBBED OF THE MIND.

THANKS FOR SHARING THE RIBBON WITH ALL OF US,
MJL0515


From QueenAlgae

Greetings,
Thanks for sending the newsletters. I don't always have time to read them but I have a nice fat folder. I may be a silent part of the group but believe me I am still here. with all of you.......
Without the long version of the story, My father in law is not being treated very well in the nursing home he is presently living. A few months ago there was a TV special about a DALLAS attorney who flew around the country helping families with problems like ours. Does anybody in the group remember (no pun intended) the special or any clue as to how we can get the name of this particular lawyer.

Thanks,
Julie


From Mtty82

Hi , I enjoy reading your newsletter. I need to know this. My mom lives with me. She has no car , no bank account or savings or anything. All she gets is Soc. Sec. and has a checking account. I am on her account to write checks act.The last time she was in the hospital , we had a lawer fill our papers for Health care Power of Attorney. Is this all I need concerning her since she dosent't have anything else? Does this give me all the power I need incase she goes to a nursing home or hospital again?
Thanks, waiting for a reply
Mtty82 @aol.com


From Currby4

--Visual disorientation is often one of the first symptoms that shows up in Alzheimer's patients and thus could be useful in making an early diagnosis.--
i wonder if this is why my mom always seems to be "focusing" as if she just woke up or something. and she is very fearfull when i walk her to the bathroom, as if she can't see where she is going. hmmmmm. laura


Anonymous by Reader's request

Karen, the words from the latest issue of The Ribbon meant a lot to me.

It with a heavy heart that I cry out. I cannot get my mother to read up on AD. It seems that she is crying out as primary caregiver, but is doing everything the book advises against. It is difficult to be supportive when someone refuses to try and help themselves. My father seems to be in some of the final stages, though we still have him at home, so the stress of the disease is beginning to show on all of us.

She reads The Ribbon, could you publish this anonymously?

CRY FOR HELP TO THE PRIMARY CAREGIVER..
READ THE DIRECTIONS, PLEASE!!!!!!!
PLEASE, PLEASE,PLEASE... READ
THE "36 HOUR DAY"
It is for YOU......AND the patient and for the secondary caregivers.

Though I want to show my love and support to the primary caregiver, please know that it is difficult when they see the primary caregiver has not taken the time to READ THE DIRECTIONS!!!!!!!!!

When I see you doing things that you could have learned about in the 36 Hour Day, it is frustrating that you have not taken the time to help us help you. Imagine your parental frustrations that as a child I would continually ask you for help with my homework and then would tell you, "I didn't listen to the instructions, but please help me anyway." Could you have done a good job? Well, I am bound by the same restrictions you are placing on me.

When I hear sharp remarks to my loved one, I know you are the end of your rope, but did you read the book to help you handle the situation? When you tell me of horrible things that happened, I feel your pain, but did you know that if you had read the book, you may very well have been able to avoid the situation altogether? I know you feel frustrated, but did you read the book to help you find how to ask for help?

Well, I've read the book, and it tells ME how to deal with the situation, but what it doesn't tell me is HOW TO MAKE YOU READ THE BOOK!!!

ANONYMOUS


From Botanist00

Kudos on this month's newsletter especially on the article Focusing on Light by Bonnie M. Haley L.S.W and the poem To My Children. I cried as i was reading both. Sometimes we do become impatient and forget and focus only on what the Alzheimer patient can not do, though we do not mean to. I have only be a caregiver for about 2 years, with this latter one having to be more of one (Dad progressed rapidly this year) and the insightful articles that you supply through The Ribbon help me and guide me through this unknowing and arduous task of caregiving. Thank You for this wonderful tool, The Ribbon and the wonderful people who support each other in our chat.
Annette (Botanist00)


From AZUREE1650

I want to thank you the wonderful piece by Bonnie M. Haley, "Focusing on the Light." I shed tears of sadness and joy, for each paragraph touches on my experiences in the caretaking of my Mother. It was very moving and inspirational. I am grateful for articles such as this.
Many thanks for a wonderful newsletter.


From JDunn56760

Thank You again. It was even more inspiring to me as I had to place my hubby into a care facility 2 weeks ago. It was a hard decision to make and follow through. I shall grieve for the man he was not for the man / child he became.


From Onenana

Thanks Karen and Jamie for a great newsletter. I greatly enjoy reading them and it makes me want to do a better job caring for my loved ones. We all need to be reminded from time to time to show more love and patience to those we care for, as well as ourselves.

Take care and have a good week. Thanks again, Joann


From NMHaver

Thank you for this issue of the Ribbon. I really don't focus on what has happened to my mom because I am so deeply sad that it has happened. I know I am not alone. And I know it is hard most of all for mom to have lost all she has ever known. But I miss her. She and I were always close, very, very close. I cannot tell you how much I miss my bond with her the way it used to be.

Anyway, I guess it's okay to feel how I "really" feel every once in a while. It just doesn't help anything to stay in a state of eternal sadness over it. But ah mom, I love you so.

nmhaver


Thank you once again for all your contributions to The Ribbon. It takes all of us; to pull together, share with each other, and ask questions of each other, in order to keep our own mental stablilty while being a caregiver. Our thoughts and prayers are always with you as we know yours are with us.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)

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