Volume 6, Issue 24
December 1, 2002

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

Holiday Thoughts 2002

Ever since my mother was placed in a personal care facility in 1999, the holiday season has been a tough time for me. The first year there was the debate about whether or not to "bring her home" for the holiday. She had gone to the facility on Dec. 7th of that year so she was still in the process of adjusting. And she was adjusting well, it was a miracle!

Her doctor told us that we could have her join us but that there was no way of knowing if leaving the safe surroundings of the home she now called home would be upsetting for her. An unknown risk. We opted to visit her instead and we had a good, albeit, sad holiday that year.

Time has marched on and so has the Alzheimer's Disease. No longer do my brother and I have the conversation about having her at the family Christmas table. We know that it would be a stressful situation for Mom and for the rest of the family. So we visit her, bearing gifts of new clothes and toiletries, things that she needs. Bring the grandchildren, and now, great-grandchildren. And for whatever time we are there, we see her smile and kiss the babies. She calls us all by the wrong names. Asks if we've seen Dad lately. Dad died in 1993. We go along with whatever she says and sidestep anything we can....like when she asks about Dad, if I've seen him...I just say..."no, I've been working a lot lately." Then she'll ask about my job. It's sweet and pleasant to talk to Mom.

But when I leave her, I know that within a very short while, if not already, she will not remember that we have been there and shared this lovely time. I then have to accept that this is the way it is, that I am thankful for the moments we had and thankful that I will have them always.

This year is especially difficult because immediatly following the Holiday Season, I will be getting married. It is the second marriage for me and I cannot help, as I plan my pending wedding, of the wedding I planned when I was 18 years old. I remember the shopping with Mom and the look on Dad's face when I tried on my gown for him. Wonderful memories. Not so this time.

Next weekend I will be going to visit with my family...my daughter, brother and Mom. I'll take pictures of my future husband with me and tell her all about him. No doubt she will then tell me that he was there to visit her just last week! Not so except in her mind. We'll laugh and she'll tell me how wonderful he is and we'll have a lovely time. And when I leave, I'll cry for the loss of her.

Those of you who provide care to your loved ones know the feeling. Whether you are helping your loved one to struggle through the first, frightening, stages or if you are a long-distance caregiver, you know the pain, the feeling of loss. And it is ongoing.

The only way to make it through this process is to share and to support each other. So reach out this Holiday Season and help each other. I truly believe that this time of the year is the most difficult for caregivers. Talk to other caregivers, exchange feelings and thoughts. Go to the chat room... The Gathering Place - Online Alzheimer's Caregiver Support - TheRibbon.com(Link: http://www.theribbon.com/GatherPlace/ ), ask a family member or friend to give you the gift of time so you can go to a movie or out to dinner. You deserve it.

From my family to yours, I wish you the very best of Holiday Seasons,

Karen
The Ribbon

Before I Forget: The PWiD's Perspective

Seven Stages of Dementia

by Dan Spencer, MS, LSW, LPCC

November 1, 2002, DASN submission

Stage One: UPS, (Unidentifiable, Persistant Stress)

Variable symptomatic duration.
No cognitive decline is evident, although life stresses of unidentified origin developing.
No subjective complaints of memory deficit. No memory deficit evident on clinical interview that can't be accounted for by other situational factors.
Subtle mood changes and increassing stress reactions present, yet no observable neurological issues are identifiable.
May NOT continue into stage 2 progression.

Stage Two: PSO, (Problems with Self and Others)

Criteria of stage one plus noticeable, mild cognitive decline (forgetfulness) and social friction (mild irritability) evident. Subjective complaints of memory deficit begin, most frequently in attention span, minor situational confusion, forgetting where one has placed familiar objects or forgetting names one formally knew well. No objective evidence of demonstrable memory deficit on clinical interview. No testable objective deficits in employment or social situations, yet subjective personal perfomance stresses continue unabated.

Mood sensitivity observable by significant others. May NOT continue into stage 3.

Stage Three: MCI, (Mild Cognitive Impairment)

Earliest clear-cut deficits. Manifestations in more than one of the following areas which now tend to be progressive, although variable at times.

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 a 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 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. Moderate anxiety and mood disturbances accompanies symptoms.

The duration of stage 3 may be long enough for adaptive responses to develop as patients MAY or MAY NOT compensate for losses usually depending upon early diagnosis and treatment (meds)

Stage Four: EMD, Early Moderate Decline.

Clear-cut deficit on careful clinical interview. Deficit manifest in 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, control emotions.

Frequently no deficit in following areas:

orientation to time and person;
recognition of familiar persons and faces;
ability to travel to familiar locations.

The inability to perform some complex tasks is evident. Denial and anger may be common defense mechanisms.

However acceptance may ocurr in this stage. Flattening of affect and withdrawal from challenging situations occur. Medication compliance for cognition, mood and behavior can reduce fearful and catastrophic retains.

Counseling and group support highly beneficial. Rehabilitative efforts to maintain cognitive functioning level appear helpful. Duration greatly variable, depending on treatment compliance and individual efforts to decrease rate of deterioration.

Stage Five: Moderately severe cognitive decline (Early Dementia), EDem.

Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s.

Persons at this stage retain knowledge of many major 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 and appropriate emotional/verbal behaviors.

Duration again is greatly variable as in previous stage.

Stage Six: Severe cognitive decline (Middle Dementia), MDem.

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 very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10 both backward and sometimes forward.

Will require some assistance with activities of daily living, 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 from unfamiliar persons in their environment.

Personality and emotional changes occur. These are quite variable and may include delusional behavior, where patients may accuse their spouse of being an impostor; may talk to imaginary figures in the environment, or to their own reflection in the mirror, obsessive symptoms where person may repeat simple movementactivities like cleaning and rocking.

Anxiety symptoms, agitated mood and even previously nonexistent violent behavior may occur, as well as loss of willpower, because an individual cannot carry a thought long enough to determine a purposeful course of action.

Middle Dementia symptoms may be moderated by structured environments, mood stabilizers and cognitive enrichment therapy. Medication adjustments are often found helpful.

Stage Seven: Very severe cognitive decline (Late Dementia), LDem.

Mostly all verbal abilities are lost. Communication is difficult. Frequently there is no speech at all ... only grunting, unintelligible vocalizations may be present.

Incontinent of urine and stool requires assistance toileting and feeding.

Patients lose basic psychomotor skills, e.g., ability to walk and balance or grasp.

The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present. Difficulty swallowing may lead to dehydration or malnutrition. Bedridden patients become susceptible to infections frequently Urinary tract or Respiratory.

Some patients maintain rudimentary relationships with primary caregivers and appear to respond to them and maintain their sense of identity, i.e., respond to their own name. Other become profoundly confused.

Some patients, unable to feed themselves, have pre-chosen by Advance Directives to refuse invasive feeding techniques such as IV tubes and feeding tubes, as well as any attempts at resesitation, DNR, and are usually transferred to Hospice for comfort care only during their remaing days.

Editor's Note: Dan classifies himself as being a 4.

Not Home for the Holidays

by Mary Emma Allen

"You're not bringing your mother home for the holidays!" a friend exclaimed when I mentioned I was leaving my mom at the nursing home and visiting her there for Thanksgiving and Christmas.

Once I placed Mother in a nursing home, when Alzheimer's had progressed to the point that I could no longer care for her, I never took her out again. I've also not been consumed with guilt about it.

Before you say, "What a horrible daughter!" let me explain. Then perhaps others won't feel guilty when they visit their parent or spouse at the nursing home instead of disorienting them by bringing them to a house they no longer recognize...whether it's their home, your home, or another family member's.

By this stage in her Alzheimer's, Mother recognized me only intermittently. At other times I might be her sister, her cousin, a neighbor...wherever she was in her life that day. The consistency in her life now was the routine at the nursing home and the staff who cared for her.

Become Involved in Nursing Home Activities

The nursing home where Mother lived provided activities for the various holidays that family members could attend. At Thanksgiving, they planned a festive buffet dinner with holiday decorations and favors. We joined Mother there and enjoy a lovely meal.

After one Thanksgiving dinner, as we wheeled Mother from the dining room, she responded with, "Thank you for taking me out today. This is a nice restaurant."

Did she realize it was Thanksgiving, even though I told her so? I learned this really didn't matter, whether Mother knew which holiday it was. She enjoyed her meal and going out to the restaurant. I received pleasure from the fact she'd had fun that day.

At Christmas time, the home conducted a Christmas party the week before the holiday, inviting family members and encouraging them to bring grandchildren. We gathered in the dining/activity room for refreshments, music, singing, and Santa's visit.

Each resident received a small gift...a comb, a handkerchief, bootie slippers, or similar item. The family members enjoyed cookies and refreshments, too.

Did Mother know it was Christmas? The first year or two she recognized Santa and laughed when her great grandson called his name. In later years, she was oblivious to this celebration. However, as an entertainer played carols on the piano, mother's hand in mine tapped the rhythm on the arm of her chair. The music had reached her through the Alzheimer's haze.

Other holidays were celebrated with a New Year's Eve party (in the afternoon instead of evening), Easter egg hunt for children while residents watched, Mother's Day brunch, Fourth of July barbecue, and other similar festivities. These were tuned to the needs and abilities of the residents and provided us with a relaxing time to enjoy that family member.

So, no, I didn't bring Mother home for the holidays. We visited her for parties arranged by the nursing home staff. We also enjoyed private visits in her room, where we opened gifts, enjoyed refreshments, sang songs.

In this way, we not only helped Mother celebrate. She contributed to our family memories as her daughter, granddaughter, and great grandchildren learned that holiday traditions can be created in many ways.

(Mary Emma Allen has written a book, "When We Become the Parent to Our Parents," about her Mother's journey through Alzheimer's. Two of her stories appear in "Finding the Joy in Alzheimer's". She speaks to caregiver and family groups to encourage others as they care for family members and friends. Visit her web site:
http://homepage.fcgnetworks.net/jetent/mea; E-mail: me.allen@juno.com (me.allen@juno.com))

In Passing: Those We Must Remember

I must apologize for this being so late; however, it is with deep sadness that I need to inform you of the passing of Lavern's (or Elvie as she came on as in the earlier days of her visiting with us) husband Nels. He passed away the first part of November quite unexpectedly. Lavern states Nels had been ill but even the doctors didn't expect his sudden passing. I have been in contact with Lavern several times in the last few weeks and she is doing as well as can be expected.

Please join with me in extending your thoughts and sympathies to Lavern and her family during this very difficult time.

Love Always,
Linda
Linda@theribbon.com (Linda@theribbon.com)
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/

Remember Caregivers; They Need a Little Pampering, too

by Sameh Fahmy

An estimated 30 million Americans are taking care of an elderly or disabled loved one at home, and chances are, they could use a gift to help them take care of themselves.

"A lot of times, caregivers are the forgotten people in the process," says Paula Hathaway, development director at the Alzheimer's Association of Middle Tennessee. "And, yes, it helps to give them things that can help them take care of their loved one, but the caregiver is the one who is at risk for not getting enough sleep or not getting enough rest.

"So my first inclination is toward something that can help relieve the stress and anxiety on the caregiver."

Dana Cagle, vice president of Family Staffing Solutions Inc., which offers respite care for caregivers, agrees, and says to get them "anything to pamper themselves."

They offer the following suggestions:

Massages, manicures and pedicures:
Most beauty salons and spas offer gift certificates.

Restaurant and take-out catering gift certificates:
That's one less meal the caregiver has to prepare.

Do-it-yourself gift certificates:
Make your own gift certificate offering to mow the lawn, prepare meals, or watch the caregiver's loved one. In addition to being inexpensive, these gift certificates provide much needed (and much appreciated) help for caregivers.

Tickets:
Barbara Heflin, who coordinates the family caregiver support program for the Greater Nashville Area Agency on Aging, suggests buying caregivers tickets to sporting events, the theater, symphony or the movies--or anything else related to their hobbies.

"They have other life interests and activities (outside of caregiving)," she says, "and the opportunity to reconnect with that is so revitalizing."

Respite care gift certificates:
Many caregivers can't leave their loved ones home alone and can feel very isolated. You can give them a chance to get out of the house with respite care gift certificates from Family Staffing Solutions Inc. ($13.95 per hour with a three-hour minimum) and home health agencies.

"It's amazing how much they need to get out sometimes and be around people their own age," Hathaway says.

Sameh Fahmy covers consumer health for The Tennessean. Reach him at sfahmy@tennessean.com (sfahmy@tennessean.com)

The Tennessean Sunday November 17, 2002

Something New at The Gathering Place

I would like to take a second to thank everyone for taking the time to come to The Gathering Place, whether it be for the one stop links on the home page or those who stop on in and visit with us Monday through Friday from 6-8 p.m. pacific time in the chat room.

I would like to invite each of you to stop on by the home page of The Gathering Place and check out a new addition. Our Wednesday night host, Diane, has honored us with a tribute to The Gathering Place. It very eloquently says everything about our humble little place to gather. Hey and once you have check out the new addition...just scroll on down to the enter chat page button and join us!

As always, thank you all so much for your love and support! Big hugs and lots of love!

Love Always,
Linda
Linda@theribbon.com (Linda@theribbon.com)
The Gathering Place
Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/

Email Bag

From larson7@tillanet.com (Gloria-Tillamook)

Hi. My name is Gloria and I have a son (who will be 14 years old on Sunday) who has Dementia. He has had it for almost 6 years. Where I live, there are no support groups just Alzheimers groups for the care givers. I went a few times but didn't find it helpful. Do you know any web sites that can provide me me useful suggestions and other things?

I also have problems with people not believing me he has such an "disease." They always tell me it's because of his Autism. It's not true. I gave up trying to convince everyone. Andy, my son, knows he has Dementia. He also knows it's hard to live with it at times. He goes to the Junior High school for 1/2 a day and having friends is somewhat hard to find. He had a brain stroke at 9 days old and because of this, his has a bad speech impediment. All his life he has struggled. All he wants to do have friends to understand him. He only has 1 good friend who does.

It breaks my heart to watch my son struggle daily. I often cry when no ones looking. I know I have to be strong for him and my other kids. All I want for him is happiness. And with just asking for such a simple thing, is such a hard request when no one, including adults, do not want to take the time out to get to know him. He's a very sweet, loving child. Always, always trying to please everyone no matter what he has to do.

I am truly sorry for typing a long letter. I have no one to talk to and the people I have talk to tell me they can't help me. Not even our Doctor. I am hoping to make a small pamphlet to give out free to the community so that they could understand more about this "disesase" and that it can effect ANYBODY...not just the elderly.

Thank you so much.
Gloria-Tillamook, Oregon

From JJCATSOR@aol.com (Jan)

This publication is so great! Thanks for all the time and effort which goes into each article, the heartfelt compassion and tenderness reaches across the miles. Caregiving is tough-support is essential-thank you thank you thank you.

Jan

From Lavernwest@aol.com (Jan)

Just finished reading The Ribbon, and want to thank you from the bottom of my heart. Though I have read ever newsletter you have sent since I have subscribed--this one deeply touched me.

I just lost my husband on Nov. 5th. Perhaps I had more time this time to really hear what you were saying, or making comparisons with the written word to what actually happened in our lives. Nels suffered from dementia, besides all the other the things that were wrong with him. Fortunately, his heart took him before all memory was gone, so i did have a knowing presence, and even more so in the last three weeks of his life, as his mind became even clearer than it had previously been.

Having been a semi-caregiver for many years, and more so in the last three and a half years, becoming even more concentrated in the past five months, I have determined to make Caregivers my mission, now that I have more time. How this will happen, I am not quite sure at the moment, but am trying to start at my church with a program sponsored by the Catholic Senior Services here in town. Fortunately there is a very good working model of the same program in a church just eight miles up the road. Having read about it, I know I would have availed myself of its services, had it been available, so I am hoping other caregivers in our parish might be served by it.

All the articles were outstanding. Especially liked your introductory article, the suggestions for Christmas gifts for those in the different stages of dementia, and the Prayer at the end. Thanks for such a great job. Though Nels is gone, I will be looking forward to each issue, and still appreciate the Chat Room.

While I am writing, I might mention I am receiving two issues of the newsletter each time. May be my fault--perhaps I signed up twice. At any rate, you may want to correct your records--just DON'T remove me. I look forward to receiving it.

Thanks for all your hard work in making this newsletter available to all us caregivers. You do a SUPER job!

Much love--and hugs!
LaVern
lavernwest@aol.com

Don't forget to do some shopping at The Ribbon! Shop Online! - TheRibbon.com(Link: http://www.theribbon.com/shop/ )(http://www.theribbon.com/shop/) You can get items from our Care Store or from Amazon.com. I've shopped at both for this holiday season.

Remember that a small portion of your purchase will go to The Ribbon. This helps to defray our "out of pocket" expenses. Some of these expenses include, paying for our website, CD's for keeping all our records, printing supplies for snail mail and our Share The Care package Share The Word - TheRibbon.com(Link: http://www.theribbon.com/share/ ), postal fees, etc. This is one way you can help us help you.

Hugs and Peace,
Jamie and Karen