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The Ribbon - Care for Caregivers
Volume 8, Issue 1
January 11, 2003

1325 Venus Drive
Nashville, TN 37217-1918

Decisions, decisions.....we've all heard and know that when a person has a dementia being put under anesthesia tends to acerbate the dementia symptoms. Sometimes they will recover back to where they were and sometimes not as much. Well, here we are having to make some tough decisions. Nick is anemic and his doctor wants him to have a colonoscopy to see if anything is happening there. He had a polyp removed about 3 years ago and the doctor thinks there may be another that is causing a slow bleed.

The other problem is that he has rotator cuff tears in both shoulders, the left being the worse. Physical therapy did nothing but make the pain worse. Cortisone shots did nothing to help so therefore the orthopedic doctor is recommending surgery. Hopefully he will recover enough that he can return to work. His Vascular dementia isn't so bad that he can't work...the pain in his shoulders has kept him from working.

That will be two times he will be put under in a short time. Do we do it or do we not? Nick is only 54. Do we run the risk that these two events will increase the dementia? My fellow caregivers at The Gathering Place have suggested that we have the shoulder done but to wait on the colonoscopy. We are praying hard for answers and after talking to the two doctors we will try to make our decision.

As for me and work, I'm still loving every minute of it. The part I find hard is having to say goodbye to those who have been with us for a while. It's not in me to be detached from our patients. They all have such unique personalities and I do grow to love each of them. What helps is that I know that the terrific people at Bridges have helped them with their illnesses and they are well enough to leave us. Who could ask for more?



Caregiving -- The Next Step

Powerful Caregiving, Increased Energy

Tele-Group Description

Our members will be supported in taking specific steps to set goals that enable more profound and satisfying caregiving. Enabling caregivers who have not wanted or been able to attend support group meetings, this telephone conference group is both convenient, private and not limited by geographical constraints.

Our focus is to strengthen the impact of your caregiving, while easing your burden. Open discussion, visualization, information/technique sharing, and a focus on the caregiver's goals, both short and long term, will be emphasized.

Why not join us and find out how caregivers just like you can care for their loved ones and still lead their own important lives?


Meets twice monthly, over the phone, beginning Monday, January 19th, 2004 (6 pm ET, 5 pm CT, 3 pm PT)

About Your Workshop Leader

Sylvia Nissenboim, LCSW

Sylvia has over 20 years experience working with individuals and families who are caring for older or disabled loved ones. She has led many focused support groups, and has worked clinically with hundreds of families - those facing caregiving for the first time and others who have been caregiving for decades. She directs Adult Day Programs for elderly and disabled adults, and has done so since 1982. She has authored two books Interactions By Design in 1988 and The Positive Interactions Program in 1998 and a number of articles on caring for those with dementia and related topics. Sylvia is a national speaker and has been consulting with organizations on this topic since 1988. She recently expanded her practice, LifeWork Transitions, to include personal and professional coaching on this and other topics.

For more information: email with Caregiver Tele-group in the subject line, or call 314-989-9056. Individual coaching sessions also offered.

Caregiver? Who me?

Ask yourself the following:

  • Do I have a family member or friend for whom I provide some assistance?
  • Do I find myself worrying about this person's health or safety?
  • Do I feel an obligation or commitment to check out if they need shopping, medication, a ride, or assistance with home chores?

A 'yes' to any of these means that you can count yourself in the growing ranks of caregivers. Yes, its providing care to a loved one, and many millions do it, but too often one critical responsibility is overlooked. Look in the mirror. This is the face of the person whose care is critical in the provision of assistance to another. If you overlook this, the quality of the care you give or the length of time you can sustain it, will surely decline.

The following tips will guide you in providing the best care possible, and in doing so, you may find your burden lightening. Five years from now, when you look back, you will see you did everything you could to ensure your health, which allowed you the emotional and physical energy to sustain your caregiving.

  • Trust others' offers to assist you
  • Arm yourself with medical and other care-related information
  • Keep up with your own medical needs
  • Exercise and eat well.
  • Create a support network with whom you can share, laugh and cry
  • Allow yourself to use outside resources-in-home care, adult day, respite care, personal coach
  • Recognize the signs of stress and depression, and seek help if needed
  • Engage in a new activity, like yoga or painting, just for you!
  • Open your home to friends and family
  • Family traditions are a must, but let others help out
  • Simplify daily routines and organize schedules
  • Encourage input from person you are caring for
  • Listen to your heart
  • Facilitate family meetings to coordinate care responsibilities

If you do nothing else, cut these tips out and keep them with you. Caring for yourself is the most important part of caring for a loved one.

Sylvia Nissenboim
Life and Business Coach: LifeWork Transitions
Web Site:

Editor's Note: We welcome Sylvia as a new Contributor to The Ribbon. We are very happy to have her join us in our goal to help caregivers.

The Ribbon - #1 for 2003!!!

It is with great pleasure that we announce that The Ribbon has placed #1 on Brenda Parris-Sibley's Top Sites/Alzheimer's-Caregiving. That list has grown over the years and provides information for all aspects of caregiving. There are over 150 sites.

To be #1 is a honor and an accomplishment that we are all very proud of. We thank all of our readers for their support. Without your e-mails, your feedback and your interest, The Ribbon would not exist.

I would like to personally thank The Ribbon Staff for all their efforts to make The Ribbon what it is today. And we are just getting started. The need continues to grow.

Let's all join together to continue to raise awareness of this devestating illness and continue to support those who bear the brunt of it's affects, the caregiver.

The Ribbon

Long Distance Caregivers Continued...

From: (Linda Merck)
To: (Linda Tucker)
Subject: Long Distance Caregivers
Date: Wed, 31 Dec 2003 17:31:41 -0600


Your input on long distance care givers prompted me to write. Our mom has Alzheimer's there are 4 out or the 6 here in the same area. I feel the family members that live long distance if they want to be involved they need to make the phone calls. I don't mean once every other month I mean every other week don't leave it up to us to make those calls we are the ones spending money helping our loved ones let them use their money for once then they will be more informed. Also don't complain when we do something that you might not have done if you want to be more involved come back more than once every three years. I understand how hard it might be to live long distance and feel your not being kept up-to-date but you need to understand with something with surgery things go very quick and doctors never tell you anything very quick anymore. My mom also had a colonoscopy then surgery and when we thought our mother was not going to make it we asked our sister to come home she said there was nothing she could do here (except show her support). She did not come but our mom got better but this sister complains when she is not kept informed so I hope you see where we the caregivers come from.


From: (Linda Tucker)
To: (Linda Merck)
Subject: RE: Long Distance Caregivers

Dear Linda:

First may I wish you the very best that 2004 has to hold for you!

I am sorry to learn of your Mother's Alzheimer's. It is a difficult disease for all; near and far!

I so appreciate your input. Believe me, I know I am the outsider and have come not to expect information. My mom, however, plays this game "if I can't be bothered to call; then I have no right to know." Fortunately, my brother does not subscribe to her methodology, so I am informed with as much information as he is told. What you do not know is that I did place a call home and found out about the procedure. I was told the procedure would happen that day and I asked to be told how it went. That phone call was not placed to me and only by my calling the hospital did I find out the procedure was postponed. There was no call to let me know how it went the following day either, and I know you will have to agree that was not right. None of this was emergency/immediate have-to-do-now procedures. I truly do appreciate the immenent have to do decisions...and as I said earlier...since I have moved, I am the outsider. However, since I moved over 20 years ago, I do not feel that I should be penalized for that decision.

My mother left her parents when she was 20-21 years of age, and I know she expected and demanded to be included on any medical happenings with her parents. I expect no more or less than that from her.

Additionally, part of what you may not know is, that I created The Gathering Place @ because I could not be there live and in person for my family. At least by helping others it would be a way to "pay forward" the help I received when we were first caught off-guard by this ugly disease.

I do appreciate your reply. All of your are points are well taken and, to be honest, I concur. May I ask your permission to post your response in the next issue of TheRibbon? I will post my reply to you as well. Please let me know.

Again, my sincerest wishes for a very prosperous 2004!

Big Hugs!


Dear Abby

by Abigail Van Buren

The Washington Post
January 2, 2004

Dear Abby:

My husband has Parkinson's disease with dementia. I have good friends who ask me to coffee or lunch to get me out of the house, but what I'd really like is if they'd ask my HUSBAND out to coffee or lunch.

Every hour I'm away, I worry about him. Plus, I have not been by myself in this house for eight years.

Please pass on a message to your readers. If you really want to help, offer to take out the ill person, and give the caregiver some quiet time.

Dear Needing a Break

To expect someone not trained in caring for a patient with dementia to take the person out into unfamiliar surroundings is asking a lot. It may be too much responsibility for your friends to assume.

A better solution would be to arrange for respite care for your husband. You could have your quiet time, or time alone in the house, by asking your husband's doctor which senior centers in your vicinity are equipped to provide safe activities for him on a regular basis. Either that, or contact Faith in Action at or 877-324-8411. It's a national program that helps establish community programs providing volunteer care to neighbors with long-term health needs.

Faith in Action is an interfaith volunteer caregiving program of The Robert Wood Johnson Foundation. Faith in Action makes grants to local groups representing many faiths who volunteer to work together to care for their neighbors who have long-term health needs.

In Passing: Those We Must Remember

Felix a dear friend on the Alzheimer's Message Board lost his beloved wife Jean on January 8th. Felix has taken care of Jean for many years to the detriment of his own health. He struggled with the decision to place Jean in a nursing home. He just recently made the decision to let her be moved to a VA home. He wasn't very happy with this decision. He informed us that she spent only one day in the VA home before Jean passed.

Felix, our condolences and sympathies are with you.

EMail Bag

Dear Jamie and Karen,

HAPPY NEW YEAR! I hope 2004 is going well for both of you. I know what Jamie's up to because I read The Ribbon, but what about you Karen?

Hopefully you were able to download our Holiday Newsletter to get updates from us.

In any case, check outthis link to The Living Center, an innovative website invention for people with Alzheimer's.

It is one of the links on the upcoming PBS documentary, The Forgetting.

Perhaps The Ribbon Readers may enjoy sharing this with their loved ones who are high enough functioning to use the computer.

Smilingly Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Tel: 661-945-7529 (California)

Speaker and Author, Finding the JOY in Alzheimer's:
When Tears are Dried with Laughter
Finding the JOY in Alzheimer's: Caregivers share the JOYFUL times
and "Where's my shoes?" My Father's Walk Through Alzheimer's
(also AVAILABLE in Audiobook, the German language, Die Zeit mit dir,
and "¿Dónde están mis zapatos?" in Spanish and NOW in Korean).

Editor's note: Please do not forget to watch The Forgetting on your local PBS station on January 21st. I also hope you signed up to have a HOUSE PARTY on that evening!

Hugs and Peace,

Karen and Jamie

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