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.
Mourning, and Guilt"
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:
Thinking the person is not ill.
Feeling frustrated with your family member or the tasks of caregiving
In the process of grieving and mourning, many caregivers find they are overwhelmed by one particular feeling: guilt. Common reasons for feeling guilty are:
In many cases, feelings of guilt are linked with unrealistic expectations or thoughts like these:
To help you work through these feelings, you may want to use the following suggestions:
Confront your feelings
Share your feelings with a sympathetic friend.
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.
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:
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.
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:
Alzheimer's Disease and Related Memory Disorders http://nncf.unl.edu
Alzheimer's Association, Lincoln/Greater Nebraska Chapter,
In Passing: Those We Must Remember
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.
Hope all is well. This poem was forwarded to me for the Ribbon.
Do you still remember me?
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.
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
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.
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".
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.
Can you please forward this eMail in it's entirety to George B.?
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
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
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.
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