Volume 6, Issue 21
October 20, 2002

www.TheRibbon.com
1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Things are finally getting a bit "normal" here at home now. Yesterday I finally bit the bullet and started cleaning Nanny's room. This was to be my "Coca-Cola" guest room and then we needed to move Nanny here to our house. I am very hesitant to start with the decorating again because I may be moving Mama over here sooner rather than later.

It seems that both my husband and Mama are dealing with depression. With my husband, it is making his dementia worsen. Mama is sleeping a lot. This week will have me making more doctor visits with them. I am in the process of writing notes to give to the receptionists so that the doctors will read them and I won't have to "tell things about them" in their presence. I found that this approach is so very helpful.

Halloween is fast approaching. I'm actually getting a bit excited about it for the first time in several years. I won't decorate again this year but I have high hopes for next year!! I do love Halloween and Christmas!

Jamie

A Kitchen Window to the World

by Mary Emma Allen

My mom enjoyed gazing out a window while washing dishes and recalled the window of her childhood above the pantry sink. For years she bemoaned the fact that, in our farmhouse kitchen, she only had a wall to stare at.

So one day my dad hauled saw and other tools into the kitchen, bought a window with four panes, and installed it above our kitchen sink. It did brighten the large kitchen and helped make washing the dishes for six family members and hired man an easier task...for Mother, and for Sister and me.

Window to the World

That became Mother's "window to the world". It looked out to the brook that ran between the house and barn. Beyond the barn were a corn field, pasture, and woodland. The scenery was ever changing, depending on the time of day and year.

Glimpsing deer at late afternoon grazing in that pasture adjacent to the woodland was a time of excitement for us children. This almost became a daily ritual looking for the white tailed deer moving slowly across the pasture as they grazed.

Windows in Later Years

Even after she developed Alzheimer's, Mother looked out the window of the house where she then lived and went back in time to the scene from her farmhouse kitchen, even though she was no longer there.

It took me awhile to figure out what she was talking about when Mother told me she saw the cows coming to the barn or the deer near the woods when neither were outside this kitchen window. Then I realized she was talking about the window of my childhood and we both reminisced over a cup of tea, providing us a happy occasion.

My Kitchen Window

Wherever my husband live, even though we have a dishwasher and I don't spend so much time at the kitchen sink, I still want a window. I like to gaze at the woods around my home, see my grandchildren playing in the yard, watch the birds flitting around, or look at trees budding in spring and changing color in autumn.

A window above the sink becomes the heritage of women who spend time in their kitchen. Mine encompasses memories of my childhood and of my mother who wanted her window to the world.

Mary Emma Allen is a columnist, children's writer, book author, travel writer, and writing teacher. She often writes family nostalgia and inspirational pieces. After recovering from a broken back and spending time in a body cast, she has tried to use her writing talent to encourage others.
Visit her web site: http://homepage.fcgnetworks.net/jetent/mea;
E-mail: me.allen@juno.com (me.allen@juno.com)

Telling Tales

by Mary C. Fridley RN, C

One of the most dreaded tasks for caregivers is the trip to the doctor. The scenario goes something like this: Appointment made; Mom forgets appointment; Mom refuses to go; it's all down hill from there. For weeks she has had various complaints, but on the day of the appointment, she denies any discomfort and wonders where you got that idea. After much cajoling you finally get her into the car and you're off. The office wait is long and Mom becomes restless frequently asking why she's there. Finally you get to see the doctor and feel like your mission's been accomplished. WRONG! The doctor greets Mom with " How are you?" and she replies, "Just fine". Every time you try to interject with a comment, Mom glares at you and denies what you're saying. You hesitate to say more for fear of being a tattletale and causing a scene. After a quick physical exam and renewal of prescriptions you're out the door in 12 minutes. Stressed and tired, you realize you left without having your questions answered and feel like it was all a waste of time. So how can you prevent this from happening again? Plan ahead. Here are some tips that are helpful:

Keep your loved one's routine in mind. If he/she is a late riser, don't make the appointment for early morning.

Avoid a long office wait by scheduling the visit for the first or last appointment of the day. If this isn't possible because of your loved one's daily routine, explain the circumstances and ask the receptionist to suggest an appropriate time. Some offices close for lunch and may be able to schedule you for the first appointment in the afternoon.

Keep your loved one involved in the visit. Help him/her write down concerns or problems that the doctor should address. An ongoing list is a good idea. Every time a discomfort is voiced or observed, add it to the list. Keep the list visible as a reminder for the upcoming appointment.

If there are problems you don't want to discuss in front of your loved one, write a separate list and hand it to the receptionist explaining that the doctor needs to read it in advance. Or, request a private consultation either in person or by phone before the visit.

Bring paper and pen to take notes. Don't rely on your memory to recall all that was said.

Sometimes a loved one doesn't want you in the exam room. Offer to go as the secretary to take notes. Keep a low profile until he/she becomes more comfortable with you in the room. It could take a few visits before this happens.

Healthcare visits are very important but tend to be rushed. With good planning and organization they'll go smoothly and be less stressful for both you and your loved one.

Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years experience in the geriatric health field. She provides community workshops and motivational seminars on caregiver, eldercare, and aging issues as well as writes articles and caregiver advice columns for websites and publications. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@hotmail.com (geroresources@hotmail.com).

Communicating with the person with dementia

Alzheimer Scotland - Action on Dementia

Communication is a very complex process and it is not surprising that many communication skills are lost when someone has dementia. Expression and understanding are both affected. Some skills of expression are well preserved whilst other aspects are considerably impaired. Although individual people who have dementia will differ in how their language and communication skills are affected, there are often similarities in their losses.

How communication is affected

The ability to think of the right word may be noticeably worse in the early stages. Later, only everyday words may be used and other words lost completely.

Pronouncing letters and words is not affected until the very late stages.

Putting sentences together is not much affected in the early and middle stages, but may get worse later.

Knowing when to reply is not affected at first, but the person will tend to say things which relate to him or herself rather than respond to what has been said. This makes the person appear uninterested in what others are saying. He or she may fail to pick up humour or sarcasm or subtle messages. What the person has to say is most affected. In the early stage topics are fewer and the person does not try to explain original thoughts or insights. He or she may speak less and conversation is dull. Later he or she cannot keep to the topic and becomes vague and rambling. He or she may speak more but begins to make less sense. Messages are repeated. Less and less is communicated.

In the late stages the person may say almost nothing, or keep repeating only one or two phrases or sounds which make no sense.

Generally it is the automatic language skills, for example responses such as 'hello', which are said without thinking which are retained for the longest time. Aspects of communication which require careful thought are soon lost.

How you can help

When we speak to someone with dementia we must try to send messages which he or she will understand. This can be difficult because problems with understanding are harder to spot than problems with expression. The response of the person to what you say can indicate if he or she have understood. The person's ability to communicate should give you a good idea of the level at which to pitch a conversation. It can help if you are guided by a few rules.

Make sure that the person is paying attention to you. Eye contact is important. Gently touching and calling the person's name can draw his or her attention.

Keep sentences short and simple. Make one point at a time. Stick to simple, familiar ideas rather than complicated new concepts. Make statements and not logical arguments.

Say exactly what you mean. Avoid suggested or implied messages. Don't say (with a sigh) "Monday, and its raining again!". Say, "It's raining, I can't put the washing out to dry."

Use real names, not pronouns (he, she). This reminds the person of who you are talking about.

Do not ask questions which need a complicated answer. Questions which can be answered with a word or two are best.

Information is not easily taken in. It helps to repeat the important parts of a message.

Gestures, body language (how we use our hands, eyes and posture), touch and tone of voice are often understood right through to the late stages of the illness. Sit in a position where the person can easily see you.

Conversation is enjoyable, but the topic needs to be one which both parties can grasp. For people with dementia this tends to be the old and familiar things in life.

It is possible, of course, that a problem with communication is caused by a hearing problem. If you suspect this, arrange for the person to see their GP. A speech therapist can give professional help with communication. Ask your GP or hospital consultant about this.

Sometimes people think that if the person with dementia does not understand then it is all right to talk about him or her in his or her presence, or believe that even if the person does grasp something of what is being said, he or she will forget about it in five minutes. Both ideas are wrong. Body language and gesture is likely to be understood and so the person with dementia will be aware of being talked about even if he or she cannot grasp the meaning. This can be upsetting. It is also possible that he or she will continue to feel angry or upset long after forgetting the original reason.

In company, conversation becomes much more difficult to follow. People talk quickly or talk at the same time, and the person with dementia is soon lost and feeling isolated. Generally, it is best to avoid large groups but encourage visits from old friends and members of the family.

Contact the 24 hour Dementia Helpline(Link: http://www.alzscot.org/info/helpline.html ) if there is a communication problem you want to talk about. Our trained volunteers may be able to help, or if the problem is complex, can get advice from our speech therapy advisor.

Thanks to Sandra Walker, Speech Therapist, for commenting on this information sheet.

Alzheimer Scotland - Action on Dementia(Link: http://www.alzscot.org/ )
www.alzscot.org

Links

Helpguide: Your Web Gateway to the Issues and Options for Mental Health and Aging Well(Link: http://www.helpguide.org/ )

Helpguide provides user-friendly mental health resources and information, including sources of help for mental and emotional problems, substance abuse, Alzheimer's / Dementia, caring for the elderly and healthy aging. Helpguide assists you in finding the best non-profit non-commercial links on the web focusing on mental health and aging well. Our editors continually search the web for the best sites on each of our topics and present these sites along with overviews and options.
www.helpguide.org(Link: http://www.helpguide.org/ )

Helpguide-Resources: Your Web Gateway to Southern California Resources for Mental Health and Aging Well(Link: http://www.helpguide-resources.org/ )

Helpguide-Resources provides user-friendly information about Southern California resources for mental and emotional problems, substance abuse, Alzheimer's and Dementia, caring for the elderly, and healthy aging
www.helpguide-resources.org(Link: http://www.helpguide-resources.org/ )

I was just channel surfing this morning, and I found a story CNN was running on Leeza Gibbons and her mom, who has Alzheimer's. Here's the news story that goes along with the TV appearance:

CNN.com - Leeza Gibbons takes on new, difficult role - Oct. 17, 2002(Link: http://www.cnn.com/2002/HEALTH/10/17/hln.bio.leeza .gibbons/index.html )
http://www.cnn.com/2002/HEALTH/10/17/hln.bio.leeza.gibbons/index.html

The 'health correspondent' said a couple interesting things:

There appears to be no link between aluminum cans/cookware and Alzheimer's, no matter what you hear on the Internet. She talked with the people doing the 'research' you'll find out there, and there's nothing to support the claims.

There are only 120 diagnosed cases of EOAD worldwide. This seemed odd to me, given how many people we talk to through The Ribbon who have the disease.

According to the site, they're going to run the spot at the following times:

WATCH BIOFEEDBACK ON HEADLINE NEWS
Friday - 5 p.m. and 9 p.m.
Saturday - 7 a.m., 9 a.m. and 11 a.m.
Sunday - 6 p.m., 7 p.m., 8 p.m., 9 p.m., 10 p.m. and 11 p.m.
*all times Eastern

From kevin@theribbon.com (Kevin)

If you go to the Cigna web site and click on the pink ribbon, Cigna will donate $1.00 to fight breast cancer.

Only good the month of October, pass it on to everyone!

Click on the pink ribbon at: http://www.cignafoundation.org

Email Bag

From AZUREE1650@aol.com (Charlene)

Thank you for a very informative newsletter! The topic on incontinence was excellent. Although I have been at that stage for approximately six months now, it was most helpful in understanding the issues caretakers and, those our loved ones face.

Congratulations Karen, in your upcoming wedding!

Charlene
Clearwater, FL.

From BigtreeMur@aol.com (Beverly Bigtree Murphy)

I see you used one of my articles. I appreciate the reference to my page and as always, your web site does a real service. I have been going through one of those years with family members spread all over the country and being the only one with the time to do duties.
In any event. Hope all is well in your life and thanks again for the mention.

Best wishes, Beverly Bigtree Murphy

From CGlaughter@aol.com (Chip Gerber)

Thanks so much for including me in "Before I Forget." I loved it. I have so much I want to say to other's about early onset Alzheimer's Disease. We need to be heard and we can be of help by sharing with others. Thanks for making this possible.
I look forward to receiving The Ribbon. God bless you as you serve caregivers and those affected with the disease. So many of us are in pain and you bring us some sunshine.

Chip Gerber

From me.allen@juno.com (Mary Emma Allen)

I'm one of those former caregivers (of a mom and aunt with Alzheimer's) who is more involved than ever with Alzheimer's since Mother and Auntie are gone. I'm doing more writing and more speaking about this disease.

I hope that what I learned in caring for them will help others as they care for a family member.

Mary Emma Allen
Author/Illustrator/Speaker
Author -When We Become the Parent to Our Parents
Contributor - Finding the Joy in Alzheimer's
http://homepage.fcgnetworks.net/jetent/mea
me.allen@juno.com (me.allen@juno.com)

Hugs and Peace,
Karen and Jamie