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.
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
Chat Schedule Update
From BHostSTS (E-Mail or IM for directions)
AOL, Alz chat= Tues at 8 @ Positive Reflections
In Passing: Those We Must Remember
HOW MUCH IS A PERSON TO TAKE IN THIS LIFE I AM NOT SURE.. I FELT
I WAS DOING SOMETHING GOOD AND YET..
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,
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?
--Visual disorientation is often one of the first symptoms that shows up
in Alzheimer's patients and thus could be useful in making an
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?
FOR HELP TO THE PRIMARY CAREGIVER..
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!!!
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.
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.
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.
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
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.
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.