Volume 3, Issue 1 - The Ribbon Newsletter

Volume 3, Issue 1
January 7, 2000

Welcome to the beginning of our 3rd year of producing The Ribbon. It seems like yesterday that we got together and decided to do this. We planned to share information that we found, then you started sharing what you found. You have shared your opinions, your ideas, your laughter, and your grief. We have a Community of Caregivers. Together, we will make it through another year.

We hope that you have found a chance to check out the new website. Kevin did a lot of work making the site user friendly. Remember the new URL is www.TheRibbon.com.

"Grief, Mourning, and Guilt"
(Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.)

It is common for both the impaired person and the caregiver to experience feelings of loss. Persons with Alzheimer's disease experience feelings of loss when realizing the gradual changes in their own abilities. As a caregiver, you will experience both your own loss and loss for your family member. Your feelings of loss will likely involve the natural phases of grieving: denial, anger, guilt, physical symptoms, and eventually acceptance.

As the disease progresses, and the person's abilities vary, you will notice fluctuations in your feelings. As the person loses more functioning, the realization of seeing the person depart - not through death, but through the gradual loss of memory, thinking abilities, and changes in personality, may become painful. Moving through a grieving process may help you cope with your losses. No two people grieve in exactly the same way. Therefore, an understanding of these processes may be helpful to you. Some common experiences involve:

Denial

Thinking the person is not ill.

Physical Symptoms

Feeling helpless, weeping or sighing.
Changes in appetite or sleep patterns.
Feeling exhausted and empty.

Anger

Feeling frustrated with your family member or the tasks of caregiving

Guilt

Feeling despair or depression - withdrawing from social activities.
Withdrawing from the person - investing less intense emotional involvement.

Acceptance

Acknowledging that caring for a terminally ill family member has brought meaning to your life.
Observing that the grieving process may impact all aspects of your life.
Appreciating the personal growth involved in surviving life's losses.

Guilt

In the process of grieving and mourning, many caregivers find they are overwhelmed by one particular feeling: guilt. Common reasons for feeling guilty are:

Feeling that something that happened in the past may have caused the person's condition.
Feeling you should have done something differently after the person was diagnosed with the condition.
Feeling badly that you are still able to enjoy life while the person is unable to do so.
Feeling as if you have failed, especially if the person with Alzheimer's must be placed in a nursing home.
Having negative thoughts about the impaired person; wishing that he or she would disappear or die.
Feeling angry with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving.
Feeling you had a poor relationship with the person before the diagnosis was made.

In many cases, feelings of guilt are linked with unrealistic expectations or thoughts like these:

"I must be perfect."
"I should have done..."
"I must always feel love for the person."
"I must do everything for the person."
"I must visit the person everyday."

To help you work through these feelings, you may want to use the following suggestions:

Action Steps

Confront your feelings

Accept guilt as a normal part of loss and grief.
Ask yourself these questions:
- "Are my expectations realistic?"
- "Did I make the best decision possible with the information I had at the time?"
- "Does it help the situation to feel guilty or does it waste my energy?"
Find ways to forgive yourself.

Share your feelings with a sympathetic friend.

Accept things that are beyond your control, and make responsible decisions for things you can control. Many people turn to their spiritual beliefs for consolation.
Complete unfinished business with others. For example, you may want to write a letter to someone asking for his or her forgiveness. (You don't need to mail the letter.) In addition, reflect on your positive and negative memories of the person with Alzheimer's.
Learn to feel comfortable with deserving good things happening in your life. Begin to change unrealistic expectations or demands. As time permits, get involved in new or meaningful activities you enjoyed in the years before caregiving began.

For many caregivers, switching from concentrating all their efforts on caring for another person, to caring for themselves is difficult. However, caring for yourself can be beneficial to the impaired person as you can gain renewed energy and a feeling of support by taking care of your needs.

Accepting your feelings.

Remember that your feelings are normal for anyone in your situation. By learning to recognize and accept your feelings, you can begin the process of healing.

Turn to others.

Share your grief with another person. Look to a sincere, non-judgmental friend who will let you express yourself freely. If you prefer to talk to a therapist who has professional training in grief and mourning, you may want to interview several therapists and choose someone with whom you feel a special rapport.
Talk to other caregivers and family members. This will give you an opportunity to express your feelings, share your experiences, receive much-needed emotional support, and develop new caregiving skills.
Joining a support group offered by the local Chapter of the Alzheimer's Association, for example, may also help you combat some of the feelings of isolation and loneliness which may accompany caregiving.

Take care of yourself.

Remember that caring for yourself is as important as caring for the person with Alzheimer's disease. Here are some ways to avoid becoming a "second victim" of Alzheimer's disease:

Return to some aspects of your daily routine. You will feel less isolated and out of step with other people.
Bring balance into your life by doing things that bring you joy and comfort. You may want to think of your life as moving along two parallel tracks: one is devoted to caregiving and the other is devoted to caring for yourself. Be sure to schedule time to move from caregiving to the self-care track.
Give yourself time to rest so that you will be less vulnerable to physical illnesses that may result from stress. Consider listening to relaxation tapes, soothing music, or trying deep breathing exercises to help relieve stress.
Allow time for physical exercise, play, or spending time in new surroundings. For example, you may want to get in the habit of taking a vigorous half-hour walk.
Let yourself laugh. Try to find humor even in difficult situations. By recognizing the humor in everyday life and giving yourself the release that comes with laughter, you can reawaken the joy of living beyond the daily chores of caregiving.
Take time to dream. Dreaming is a healthy sign of belief in your future. Allowing yourself to visualize what is to come will help you to remember that your life is more than this caregiving experience. In the process of grieving, old dreams will be released when new ones are firmly in place.

Grieving and mourning are natural processes that caregivers experience. The length of time and when it occurs will vary with the severity and length of the disease. Understanding these processes and how to cope with them should help you provide quality care.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 200 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Carol J. Farran, DNSc, RN, Associate Professor, Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois; and Geraldine Monbrod-Framburg, Caregiver, Manager, Inquiries Processing, Alzheimer's Association, Chicago, Illinois.

Additional information was provided by the following Chapters of the Alzheimer's Association: St. Louis, Mid-Missouri, and Lincoln.

Other Resources include:

C.J. Farran, DNSc and G. Monbrod-Framburg. "Loss, Mourning, and Suffering: The 'On-going Funeral' of Dementia," Self-Help -- Concepts and Applications. A. Katz, H. Hedrick, D. Isenberg, L. Thompson, T. Goodrich, A. Kutscher, editors. Philadelphia: The Charles Press, 1992.
D. Jeanne Roberts, MA. Taking Care of Caregivers. Palo Alto: Bull Publishing Co., 1991 Article courtesy Alzheimer's Association, Lincoln/Greater Nebraska Chapter,

Alzheimer's Disease and Related Memory Disorders http://nncf.unl.edu

Article courtesy Alzheimer's Association, Lincoln/Greater Nebraska Chapter,
http://nncf.unl.edu

In Passing: Those We Must Remember

From Russell363
dated 12/24/99

This is to let you know that Mom passed away about 1:00 PM yesterday, Dec 23rd. Her long battle with Alzheimer's Disease is over now. She passed quietly in her sleep and now has her hard earned, and well deserved wings. I'm having her cremated and will take her to South Carolina to be buried next to Dad, and plan to have a graveside service there, but don't have a date set as yet.

Russell

E-Mail Bag

From BHostAC

Hope all is well. This poem was forwarded to me for the Ribbon.

Do you still remember me?
Can you see my face?
Do you hear my voice right now?
Or is it all misplaced?

Do you still remember me?
The child of long ago,
Peering from my crib at night,
To eyes that said hello.

I can still remember when,
You taught me how to skate,
Or showed me how to fish,
Even putting on my bait.

The day you came home tired,
You had worked so hard that day,
Only to start working more,
On corn or wheat or hay.

Do you still remember when,
I fell and scraped my knee,
You picked me up and said, "All right",
"Here's a kiss from me.";

How about that awful storm,
When you were brave and true.
I knew my Dad would save the day,
And make that day look new.

I know you don't remember me,
Your eyes, they stare right through.
Or you're talking to that person there,
But only you know who.

I wish for days when I could see,
The love within your eyes.
When you saw your daughter by your side,
Not a stranger passing by.

When will they find a cure for this?
Or will I sit some day,
And stare right through my daughter's eyes,
As she would softly say,

Do you still remember me?
I'd hoped you could this time.
I will carry all the mem'ries now,
The hope, the love, the mind.

copyright 1999 Pam Gilbert Montambo

December 17, 1999

I sent you a poem yesterday that I wrote. You were going to send it to "Ribbon". Thank you for that. I would like to add, although, that I do not want anyone else using it without my permission. Sort of a copy write, I guess. This poem is just so special to me that I don't want it flying around without people understanding why it came to be.

From mowry@nauticom.net

Dearest Karen--
You handled your mother's transfer so much better than I did with my mother. I had the uncontrollable urge to explain everything, thinking it would help. It only frustrated and confused her. But every night before I fell asleep, I would remember that my mother was warm and safe, and that the staff would be alert to her needs. Yes, the time was right for her transfer. Moving from the hospital to the care facility seems to be the best way.

--Erma

From JDD1953

Thank you so much for this newsletter, I have felt so alone lately. The way you described things in the opening paragraph is exactly how I feel. Also the info on vascualar dementia is very helpful as that is what my mom has. Well, better run, thanks again. Merry Christmas

From JRNYWMN

Dear George B.

I read your letter in The Ribbon, and immediately teared up (which I am so prone to do through all this). When I speak with people about Alzheimer's, I am constantly saying "this is so common" about certain actions/responses. What is common about what you spoke is your mother's response to your pain. Except for my four-legged "kids", I have no children. What I have, though, is a mother who offers the same consolation that you experienced. Throughout the time that we had her here at home, and still as she lives in an "Alzheimer's-specific" home, she offers that "safe haven" of a mother. She has always been totally selfless, even with all the frustration and loss she's suffered from theAlzheimers.

I feel for your pain, but never could I console you as your mother did. That is truly a gift of God, and I thank God for his gift of my mother to me. Thank you
for sharing your letter.

Ann

From Ineedmusic

Dear Friends

What would I do without this wonderful newsletter? Your stories, poems and articles have helped me through some of the darkest and saddest times with my mother.

This is the time of year that triggers so many memories of the person my mother used to be. I'm sure that many of us spend time reminiscing about times when we were all together with our families and we were all "whole." For many years now I have believed that our lives are comprised of many smaller lives. We do not begin at birth and end at death. Rather, we have many, many new beginnings and many endings. Our lives are constantly being altered by circumstances that we usually cannot control--death, birth, illiness, new loves, moving to new places, new homes, new schools, jobs, etc.--and each time we end an old life and begin anew. I try to see my mother's AD as a series of new beginnings. Perhaps they are not the happiest of times, but each time she changes, I try to accept that this is where we are now and we will make the best of it. Love and acceptance and the realization that some things in life are beyond our control help us through the hard times and add to the joy of the good times. Enjoy your memories, but never stop making new ones.

My very best to all of you for the holidays and may you all find light in the darkness, music in the silence and peace in the sad times. Joan G.

From BGain319

Just wanted to take a minute to let you know what a true blessing The Ribbon has been over the past year (I think it's been close to that anyhow). There have been several articles that really touched me...but none quite like the Vol. 2, Issue 25 that I just read (Dec. 24th). I figured it was about time I at least "give" something in the form of a response.

I had somehow felt that everyone out there was dealing with "just" Alzheimer's Disease. In spite of all the online research I have done, information I've collected, etc. I somehow couldn't imagine anyone "connecting" with my situation. My 77 year old Mother suffered a stroke in Sept. 1998 and has been diagnosed with MID (multi-infarct dementia). It has certainly been an emotional and "educational" year. I continue to have a few problems emotionally dealing with this situation and am very "hesitant" to let the rest of my family know just how this is affecting me. Maybe that's why I have chosen to write this message. If I can't share my emotions with them, I guess I'm hoping I can share them with you.

If my sister says "Barb, don't take it personally" one more time, I'm afraid I might scream!!! How else am I supposed to take it? The whole situation is completely personal for me. While my Mom was never able to share her feelings and lot of other things with me (or anyone else) even before this stroke hit her, she and I were still very close. Oh, we argued and yelled at each other....more than I care to think about sometimes....but I know that she loved me and she knew I loved her. She was my friend, my shopping buddy, and my vacation companion. Now that's all gone. Now I'm "just the daughter that runs her life" (which is who she tells people I am). To me, the loss I have endured is "completely personal".!!! Is that so wrong to feel???

I don't want to sound totally depressed and down during this Holiday season...but I guess felt that I HAD to say that someone. Guilt sometimes comes on me as I think back and reflect on things that were happening prior to the Sept. 1998 stroke. Reading this issue of The Ribbon brought it all back. Some of the symptoms of MID were written in this issue, and it really didn't dawn on me until now that that's exactly what was happening to Mom before she ended up in the hospital. She had had a number of "mini-strokes" and there were symptoms...but we had no idea what was going on. NOW we know. The guilt eases as I talk to my Lord about Mom...He is, of course, my "saving grace". If I did not have my faith at this point in time, I truly feel there are times when I would have lost it completely.

Well, now that I have "dumped" on someone I sincerely thank you for listening. To end on a more upbeat note, Mom is doing well, has found a gentleman friend at the assisted-living facility who is good for her. He "challenges and quizzes" her to try to make her "think"...and he encourages her to "do" things for herself. She seems to be happy and content and I am grateful for that. Physically she is doing very well....high blood pressure is finally under control and that's been a real concern over this past year. She will be spending Christmas Eve at my sister's ... that's where she always spent Christmas Eve and it'll be nice to see how she does. I sincerely pray everything goes well.

I'd like to wish all the Caregivers out there a Very Merry and Blessed Christmas. And a special Blessing to the "editors" of The Ribbon for being so dedicated to this group of people. God Bless!

Thanks again for "listening".
Love to all
BGain319@aol.com

From Vixcoughdrop

Thank you so much for allowing me the opportunity to share with other caregivers these special moments. I have a lot to learn about sharing, but this helps. I am just beginning to get involved with the caregiving of my 75 year old mother who just had a birthday on Christmas. I find it very disheartening that I cannot do more. But maybe, by reading this newsletter and finding chatrooms I can pick up some ideas and find support. Thanks Again, Nancy.

From BAvadian

Can you please forward this eMail in it's entirety to George B.?

Dear George,

I was touched by your message in The Ribbon and would like to correspond with you re: including your writing in my forthcoming book on the Joyful moments of caring for our loved ones with Alzheimer's.

If you are interested, please send a reply (with a copy of this entire eMail) to: CAREVOICE@aol.com

Genuinely,
Brenda Avadian
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's

From gilloz@hughes.net

Hi. The Good Humor Man here. I'd like to share with all of you one of my humorous moments I experienced with my mother while taking care of her.

One Saturday evening while watching TV, a Pfizer commerical came on. It was advertising all the diseases it is involved with and what they are doing about them. When the words "Alzheimer's" appeared on the screen, I looked at my mother and said, "look ma, thats the disease you have". While still looking at her and her eyes watching the TV, she replied, "Erectile Dysfunction?". I quickly looked backed to the TV only to see those words fading out. I looked backed at my mother and she replied, "Is that the disease I have?" I fell to the kitchen floor of laughter. After regaining my composure, I explain to her what erectile dysfuction was. She replied, "Well, I rather have that then my constant forgetting." Amen

From SewingBabe

For all of you who may have vowed to keep a journal this year, here is the quote to spur you on. Karyn

Your journal is a place where your point of view on the universe matters.

-- Mary Pipher

From AGwynne50

I just wanted to let Mina know how much I enjoyed her curtain idea for her uncle. What a great project! I'm going to keep that in the corner of my mind (a dark and dangerous place!) for future reference.
Mina, I hope you come and visit us in the Tuesday night AOL chat again.
Thanks,
Andrea

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)