Volume 1, Issue 1 - The Ribbon Newsletter

Karen and I (Jamie) are happy to be trying our hands at turning out this, our new Alzheimer's Caregivers Newsletter. We want you to know that this is a newsletter and not a newspaper. We invite you to send in your thoughts, questions, and any information you think is important to all of us. Without you, there would be no newsletter to keep us all informed and together. Everyone's contributions are needed and important. We will try to get these in as space permits. If you should know anyone who would like to be put on the mailing list, let us know. We are starting from scratch on the list so those who were on the old list will not be on this one.

Please mail your correspondence to Karen atKMenges581@AOL.com. We are dividing up the work to make this easier on both of us. In a near future issue we will introduce ourselves.

THANK YOU, THANK YOU, THANK YOU

BH AChambs has been a real trouper for stepping in and hosting during this transition period. We've taken notice and it has been greatly appreciated. Introducing our new Co-Hosts, BHostSTS and BHostRidl. These two ladies have volunteered to take on the job. Those of you who are regulars know them as STSWILLIE and Ridley6. For our newcomers, you will find them to be wonderful people and very capable of taking care of our group. It's a tremendous job so show them how glad we are that they accepted this challenge.

As most of you know, Bill is no longer hosting our group. The information we have is that he is fine but having some personal problems. He will not be back as host. He did so much for the group and we wish to acknowledge that fact. Join us in sending him best wishes for his future.

One of the most requested articles is the Seven Stages of Alzheimer's Disease. Therefore, we are printing it now so everyone can have it to refer to. This does provide help in knowing approximately where your loved one is and what may possibly be in the future.

GLOBAL DETERIORATION SCALE FOR ASSESSMENT OF PRIMARY DEGENERATIVE DEMENTIA
1) NO COGNITIVE DECLINE	No subjective complaints of memory loss No memory deficit evident on clinical interview
2) VERY MILD COGNITIVE DECLINE (Forgetfulness)	Subjective complaints of memory deficit, most frequently in the following areas: forgetting where one has placed familiar objects forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment of social situations. Appropriate concern with respect to symptomatology.
3) MILD COGNITIVE DECLINE (Early Confusional)	Earliest clear-cut deficits. Manifestations in more than one areas: patient may have gotten lost when traveling to an unfamiliar location co-workers become aware of patient's relatively poor performance word and name finding deficit becomes evident to intimates patient may read a passage or book and retain relatively little material patient may demonstrate decreased facility in remembering names upon introduction to new people patient may have lost or misplaced an object of value concentration deficit may be evident on clinical testing Objective evidence of memory deficit obtained only with an intensive interview. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.
4) MODERATE COGNITIVE DECLINE (Late Confusional)	Clear-cut deficit on careful clinical interview. Deficit manifest in the following areas: decreased knowledge of current and recent events may exhibit some deficit in memory of one's personal history concentration deficit elicited on serial subtractions decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: orientation to time and person recognition of familiar persons and faces ability to travel to familiar locations Inability to perform complex tasks. Denial is dominate defense mechanism. Flattening of affect and withdrawal from challenging situations occur.
5) MODERATELY SEVERE COGNITIVE DECLINE (Early Dementia)	Patient can no longer survive without some assistance. Patient is unsure during interview to recall a major relevant of their current lives, e.g., an address or telephone number of many years, the names of close family members such as grandchildren, the names of the high school or college from which they graduated. Frequently some disorientation to time (day of the week, season, etc.) or place. An educated person may have difficulty counting back from 40 by 4's or from 20 by 2's. Persons at this stage retain knowledge of many facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
6) SEVERE COGNITIVE DECLINE (Middle Dementia)	May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting form 10m both backwards and, sometimes forward. Will require some assistance with activities of daily livign, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar form unfamiliar persons in their environment. Personality and emotional changes occur. These are widely variable and include: figures in the environment, or talk to their own reflection in the mirror obsessive symptoms, e.g., person may continually repeat simple cleaning activities anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur cognitive abulla i.e., loss of will power because an individual cannot carry through long enough to determine a purposeful course of activity.
7) VERY SEVERE COGNITIVE DECLINE (Late Dementia)	All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g. ability to walk. The brains appears to be no longer able to tell the body what to do. Generalized and cortical neurological signs and symptoms are frequently present.

A Message from SewingBabe

Stress Management. So many things to do. So little time to do them. Be a caretaker is hard work. It requires every bit of patience that you may have and then some. It also requires good organization skills and most importantly taking care of yourself. I can already hear you saying that you do not have time to take care of yourself. I bet half or maybe all of the caretakers who get this newsletter feel streched as far as you can go and demands just got made worse. Well I am telling you that you have to take care of yourself. Taking care of your needs makes you a better care taker. Getting out every now and then and doing things that you enjoy doing helps to relieve stress. It also helps to give back to you a piece of yourself. Ok, you say you have received this message loud and clear. But it is getting started that is the hard part. Well first you are goiong to have to some work. That is to find someone or some place that you can trust your loved one with to give you that time. Call the local Aging Agencies and Senior groups to get referrals. Ask about in home help and day programs. Find out what your loved one qualifies for under different state programs by calling the public aid office. For a younger person (40's - early 60's) with Dementia call the Department of Rehabilitation (In Illinois it is known as DORS). And remember all of those people who have offered you help in the past? Take them up on it. Do not be afraid to ask people for help. You need it now. In the meantime here are some tips that can help you get through the day. first of all lose the candy and caffiene fixes you may be taking during the day to get you by because you did not get lunch or supper. They can actually make you feel more tired in the long run. If you are feeling low on energy eat protein food instead, such as eggs and tuna. This will give you longer lasting energy to get though the things you need to do. Make sure to eat a healthy diet with fruits and veggies. Drink plenty of liquids. The better your health the better a caretaker you can be. Secondly, take the time to exercise. If your loved one can walk, take them with you for a quick walk around the neighborhood. It has been shown that people sleep better at night when they exercise. If your loved one cannot leave the house, ask your partner to stay in the house while you go for a walk. And lastly, do not think your house has to be perfect all of the time. Make sure that it is safe and there are not piles for people to trip on. Get food put away and the laundry done. But do not act as if Martha Stewart is coming to visit in five minutes with her grade book out. Have you noticed we have never seen her real home? I bet she has dust bunnies under her bed too. One other thing that may help you. In the book Simple Abundance, the author suggests having a gratitude diary. At the end of the day write in a book five things you are thankful that day. You may want to consider doithat even on the bad days, when you write in the very basic of things (my health, my kids, my job, no rain today) just so you can remeber that there are not only grey days to our life. In the midst of the ordinary, specialness can be found. I hope these tips help you work out some of the stress in your life.

Karyn Bowman aka SewingBabe lives in the Chicagoland area and is a recreation specialist for an adult day center specializing in dementia care. She has worked with seniors for the last ten years and in her present position for the last three. She has a bachelors degrees in Psychology and English. Karyn also is married with two small boys, one dog, one cat, and one goldfish.

A Cutie from Monoq

You can include the following in the newsletter if you think it is appropriate -- it decribes me to a tee -- Niki

"Dear Lord, I want to thank you for being so close to me so far this day. With your help I haven't been impatient, lost my temper, been grumpy, judgmental or envious of anyone. But I will be getting out of bed in a minute and then I think I will really need your help. Amen"

Comments from Alzjane198

During a recent group meeting someone brought up Pick's Disease. Here are two links that might help:

Pick's Disease Support Group News Letter
LILAUTHOR1's Home Page

Note from editors: Pick's Disease mimics Alzheimer's to a great degree. This is a site you might wish to check out. Pick's Disease causes patients to gorge on food which is a difference. This site has some interesting links such as "Telling the Children". I found it to be very informative. LILAUTHOR1 was a monthly contributor to the previous newsletter. We have corresponded with her and she is considering whether to continue that task. We are keeping our fingers crossed.

In Passing: Those We Must Remember

From FTSEFFECT on 1-22-98

Please let the support group know that my mom passed away at 4:26 am this morning.........she passed at home with her family around her and went very peacefully...............Suzanne

Also SharNov1 has lost her loved one. Her mother has passed

Group lets all show our support and love to these two ladies. They need us now more than ever.

We hope you have enjoyed our first issue. As of now, this will be bi-weekly with the hopes of becoming weekly. Remember to take care of yourself as you take care of your loved one.

Karen (KMenges581)
and
Jamie (DrMOM1955)