Volume 5, Issue 12 - The Ribbon Newsletter

Volume 5, Issue 12
June 11, 2001

TheRibbon.brinkster.net
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

I don't know about the rest of you but I'm really having a hard time writing JUNE when I'm having to date something. Has a half of a year already gone by? Where did it go? I feel like I've missed some of it.

I guess this is a normal thing when you are a caregiver. You are so busy all the time with taking care of your loved one plus having to take care of your family and all the everyday things such as work, laundry, cooking, housecleaning, etc., etc., etc.

It has been very busy here since my husband hasn't been able to work for a little over a month. He's driving me crazy with "his" projects. The last one I do like though, we built a new huge deck this past week. I get to stain it next week since it will be raining the rest of this week.

It has been great for Nanny, she comes over and sits in the rocker and watches us work for hours on end. She is out and getting some good ol fresh air!!!

-- Jamie

Negative Or Positive Choices

As caregivers we sometimes encounter feelings of negativity, such as resentment, hate, anger or even fear. We might even experience mixed feelings bouncing back and forth from a negative to a positive. Most of us don't like to admit that we can have these feelings, which may be provoked, by other individuals or situations.

What are some of your negative emotions that you are conscious of?

What are some of the reasons for your negative emotions?

Can you get in touch with some of your feelings of inadequacy, of inferiority and even fear it self, or fear of the unknown?

Many of us are quick to judge or find fault with others. We may focus on the negative conditions while others are able to look at situations in a more positive light. Those who can search for the positives in situations search for options or choices. They don't allow themselves to get stuck.

Are you more negative or more positive most of the time? What percentage of each would you consider yourself to be?

We all have the power to change ourselves. It is only a matter of looking at ourselves by examining our attitudes and desires. Then we can make a conscientious choice to help ourselves. Time heals and before we know it we have built new attitudes of love, compassion and understanding. As long as we are aware of our own attitudes and are willing to change what we don't like, change can and will occur.

Many times we might lose patience or become frustrated. Sometimes we want another person to change; possibly the loved one we are caring for. We cannot change anyone but ourselves.

As caregivers we must also learn to remain focused with the bigger picture of the process. We must have patience and we must learn to listen and not to react to what others say all the time. Those we react to may have difficulty in expressing themselves or they might use words that push our buttons. We must not let ourselves be distracted and work towards maintaining peace from within ourselves.

An exercise you can practice is to take a negative attribute and find it's positive aspect. Write it down on a post it note and place it in an area such as the bathroom window, on the phone or in someplace where you are reminded by the new attitude several times throughout the day. When you see it, smile at yourself nurturingly, maybe even laugh, and know that you have chosen to change this attitude and the change is already in action. Try it!!!!

Copyrighted by Gail R. Mitchell 12/98

Gail Mitchell's Empowering Caregivers site can be viewed at http://www.care-givers.com. She has published several articles and is hoping to publish her manuscript on her caregiving process with her Father. Gail hosts chats from the Empowering Caregivers site, on AOL in the AllHealth/Ivillage forum, and guest hosts at other Caregiving Internet sites. Gail is available for speaking engagements and offers workshops for groups of 25 or more. You may email Gail at grm4love@care-givers.com

Failure-Free Activities for the Alzheimer's Person
by Carmel Sheridan

For the person affected by Alzheimer's disease, the day is often filled with failures, mistakes and obstacles. These occur as a result of a reduced capacity in many areas, brought about by changes in the brain. During the early stages of the disease especially, the inability to remember and communicate things is a terrible source of frustration and stress. Without adequate memory and a capacity to know and interpret everyday happenings, the world for the victim becomes a frightening and threatening place to be. As the disease advances, the opportunity for success and a feeling of self-worth is further limited. Failure becomes an all-too-familiar experience; even in little things, the Alzheimer's patient fails repeatedly. And every caregiver knows the frustration and helplessness that ensue.

The aim of this document is to offer simple activities which help reinforce the patient's self-esteem while relieving boredom and frustration at the same time. This, for the caregiver, involves being alert to the preserved abilities of the patient, and helping her develop and use the skills she still has. The more involved Alzheimer's patients remain with the world around them, the more resourceful they become at finding ways to keep that world from slipping away.

The activities described here may be used by who come in contact with the Alzheimer's patient: the family caregiver, the companion, the nurse's aide or the occasional visitor. They are described as failure- free activities because they are adapted to suit the needs and capacity of the person with memory loss, and are to be used in a way that will enable the person to succeed.

Used appropriately, activities provide moment-to-moment satisfaction and raise self -esteem. They help nurture the person by removing focus from the disability onto preserved abilities. By allowing the patient to have a meaningful role, be it washing the dishes, dusting, or singing along to old tunes on the radio, the patient's self-confidence is built up.

Caregivers can help slow the consequences of the disease by allowing the patient perform a her fullest potential. This involves recognizing whatever skills and interests are retained and helping the patient to capitalize on these. The emphasis is on assets rather than deficits, and the patient is helped to use the abilities which remain. Chores and simple activities can be sensitively set at a level which does not place the person in a position of failure.

Which activities work best?

Only time and experience will show which of the activities described in this book are the most suitable for your relative. Since there is very little evidence to suggest which activities work best, a trial-and-error approach, with adjustments based on observations, is essential.

The findings of one survey, however, may be worth keeping in mind as you set about planning activities at home. Nancy Mace surveyed 346 day-care centers nationwide and reported that the most successful activities with victims of memory loss were those which:

Take advantage of old skills
Offer social interaction (sing-alongs, pets, visits from children.)
Allow considerable physical activity (physical exercise, active games, walks and outings)
Support cognitive functions (reality orientation, reminiscence, and listening to music.

In the survey, the following specific activities were identified as being most successful (those which participants seemed to enjoy most):

Sing-alongs
Active games
Physical exercise
Outings
Walks
Listening to music
Reminiscence
Reality orientation
Visits from children
Visits from pets

The centers surveyed reported that the above activities were more successful than quiet games (e.g. bingo), and activities that require fine motor and language skills (e.g. crafts and current events discussions).

Features of Activities

The choice of activities is extremely important. Most A.D. patients are aware of their memory loss and failing in a simple activity will only add to their frustration. The following guidelines then should help family members in their use of the activities described in this book:

Simplicity The activities in this book are short, simple and have few verbal instructions. When using them bear in mind that their simplicity is the key to their success. Keep them simple!
Duration Because the person with A D. has a reduced attention span, the optimum time for any activity is from twenty to thirty minutes.
Distraction If the patient becomes frustrated or upset, discontinue or switch to another activity.
Flexibility Be creative and flexible in your approach. If one activity doesn't work, try another tactic.
Level of activities Keep on an adult level for as long as of possible, but bear in mind that as the disease progresses, childrens' picture books and games may be useful.

Failure-Free Activities for the Alzheimer's Person from Alzheimer's Outreach
www.zarcrom.com/users/alzheimers/a-06.html

Book Nook

I have had a chance to do some reading off and on for the last few months. I'd like to give you a few suggestions and also let you know that you can order them off our website by clicking the Amazon.com button.

Your Name Is Hughes Hannibal Shanks by Lela Knox Shanks

I found this book quite interesting. Mrs Shanks took care of her husband at home with some help from her grown children. She has such an insight that truly inspired me. A quote or two that will stick with me forever:

"There is no element more central or more necessary for excellent careproviding than the acceptance of the AD patient as a human being, yet this basic concept of the humanness of the patient is all too often overlooked. When we deny another's humanness, however, we deny the existence of that person's inner spirit or soul."

"Dementia or disease cannot destroy anyone's essential humanness. Humanness is a gift of birth. It is intrinsic to our being, to the life that we are. Dementia is just one of the legions of manifestations of what it means to be human. As one author puts it, 'A lethal disease in old age is not necessarily a tragic outcome, but an inherent part of the human condition.'"

Alzheimer's Disease...Caregivers Speak Out by Pam Haisman, R.N.,M.S.

Pam communicated with the AOL Support Group several years ago. She asked for members to share their stories and also wanted to know about our "teal ribbon". She was kind enough to use teal colors and also a big teal Alzheimer's Caregiver's Ribbon on the front cover of her book.

I have not finished reading this book..I read a little and put it down for a few days then read more. I have wept, I've gotten angry, and I have been informed by this book. It is a compilation of letters, emails, etc that Pam received. It is the caregiver's own words. I have to admit, I do try to see if I recognize anyone's wording. Pam does not give names on any of the caregiver excerpts.

She gives helpful advice during chapters as well as at the ends. Needless to say, my book is getting very highlighted.

Some of the chapters are: Family Caregivers Speak Out to Health Care Professionals, Caregiving Spouses Speak Out, Caregivers in Nursing Homes Speak Out, Young People Speak Out. I can't wait to get to the end.

Coping With Caring...Daily Reflections for Alzheimer's Caregivers by Lyn Roche

I did not order this book. A dear friend sent it to me. It is a daily refresher for me. There is a page for each day of the year and when the year is up you just start over again. It will always be helpful.

Just to give you an example here is tomorrow's page:

June 12
I have overcome many doubts. I doubted a support group would really help my situation. I doubted my abilities as a caregiver. Then, I doubted anyone else could care for my loved one as well as I could. I doubted I could get over every obstacle and when I did, I wondered why I doubted. Coming through doubts I have gained strength and faith.

Today's Tip: When dealing with incontinence, take advantage of the numerous baby care products available. Many products help with cleanup. There are lotions, creams, and ointments to keep skin free of infection and rashes. Refrain from referring to incontinence undergarments as diapers. Doing so is degrading.

Email Bag

From Karen and Jamie

We haven't received any emails. Where is everyone? It's nice warm weather out there so maybe everyone is enjoying the outdoors. We would like to hear from our readers. Don't be shy, we welcome any comments, suggestions, questions, poems, links, articles, etc.

We also apologize for the web site....sadly, it is still down. You will receive a notice when things get back to normal. In the meantime, please note our "temporary" site... http://theribbon.brinkster.net/. Hopefully, things will be back to normal soon.

Smiling,
Jamie and Karen

Father's Day will come in between issues. We would like to say "Happy Father's Day". Go visit your father, if he has already passed away then visit with your mother and share the day with her. If you are the father, make time for yourself for a little while today. If you have children over to visit, enjoy!!

Until next time, we wish for you

Hugs and Peace,
Karen and Jamie