Frontotemporal Dementia Caregiver Support Center

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Caregiver Issues - Taking Care of Yourself

The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
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Of everything I have read about caregiving, my favorite article that has stuck with me is from the "What If It's Not Alzheimer's". In Chapter 23, "From Loss to Life" it discusses Managing Emotions and Grief from Rev. David Cotton.

In this chapter there is a topic about Emotional Health. Rev. Cotton talks about 4 steps to emotional health. I have used these 4 steps to help deal with my brother, and I think others can benefit from it.

I really recommend you take the time to read this section of the chapter in the "What if it's not Alzheimer's" book.

The four steps are as follow:

1. Reimage

Rev. Cotton talks about caregivers having to change their thought process from:

"What used to be to what is,
from what should be to what can be."

2. Refocus

Rev. Cotton talks about the caregiver seeing past the disease. It is important to remember that the disease and the person are different and distinct.

"Refocusing beckons us to see our lives and to see ourselves as so much bigger than any disease."

3. Remember

Rev Cotton discusses how FTD may have stolen the person away from you, but it cannot take the memories away from you.

"FTD cannot take away the past, the precious memories of time you once shared."

Even before I read this book, this is one thing I tried to emphasize to people. Enjoy every moment with your loved one and cherish the memories. Life is made of moments!

4. Refresh

Rev. Cotton talks about taking care of yourself. He has several good ideas and suggestions about refreshing.

"Refresh calls us to create an oasis of health in the midst of the deset of disease."


"Love who they were, care for who they are."
Author Unknown
Sorry That You Are Here
It is indeed a difficult road. I am a very good swimmer. One time for the fun of it, I have tried to swim upstream in a river with a strong current. At most, I could stay at the same location. After a while, I began to get tired and started to loose ground. I had to give up. To see the difference, I tried to swim with the current. It was also difficult to keep control, but it was going very fast and not tiresome. A bit scary, but fun. To me, FTD is like that river. It is a lost battle. If you try to fight it it will burn you down and you will loose anyway. If you play with it, you still can have good moments and still have a reasonable life. The key ingredients is understanding and adaptation. It is difficult but it can be done.
(Quote written by Alphi.who's wife has FTD)
+11/15/07 (Alphi)
When you reach the end of your rope, tie a knot in it and hang on. - Thomas Jefferson



Best FTD Resources

What If It's Not Alzheimer's
© 2003 by Lisa Radin and Gary Radin

Chapter 22
Pages 305-310
A Daily Break: Respite and Personal Care for the Caregiver

Chapter 23
Pages 311-322
From Loss to Life: Managing Emotions and Grief

Association of Frontotemporal Dementia (Website)

2005 Caregiver Conference General Session Videos
Google Video - Psychosocial Impact (37 minutes)
Google Video - Staging & Long Term Care (26 minutes)
Google Video - Daily Life Resources (19 minutes)

Pick's Disease Support Group (Website)

No information was found on this website about this topic.

University of California, San Francisco (Website)
Family Caregiver Alliance (Website)
National Institutes of Health (Website)


Other Internet Articles

The National Alliance for Caregiving had this prescription from the Surgeon General for caregivers that Johnson & Johnson created. It is unbranded and they are encouraging doctors and other health professionals, administrators of support groups and other caregivers programs (that this site!) to prescribe it. So I am giving the prescription and as a caregiver I hope will you read the instructions careful and do as it says whenever possible!

+11/06/06 (Don B.)
Yahoo Health offers a web page about dementia. This information was created at a company called Healthwise here in Boise, Idaho. I worked at Healthwise for about 5 years.;_ylt=AlXxwoZ_3nscslGKRRyhZjamxbAB


WebMD provides valuable health information, tools for managing your health, and support to those who seek information. If you decide to search for something like "ulcer", if you click on links under "Sponsored Links" you will be taken to a website where they are here to sell you something. Please be careful if you select a link under "Sponsored Links". Go past these links to the links that have the following phase, " WebMD Medical Reference from" or starts with "WebMD". A lot of these links point to information from a company called Healthwise.

The Internet For Women
™, a leading women's media company and the number one women's community online. This website is mainly for women's health.

The Desert Southwest Chapter for the Alzheimer's Association provides a checklist that has useful information.

TTMed Dementia offers a slide show like Modules about Family Caregivintg for Patients with Alzheimer's and Dementia. There are several Modules you can go through and pick out thing that may help you.

The Regional Dementia Management Strategy of Ten Top Tips for dealing with people with dementia. This article has more emphasis for professional caregivers, I believe it can be used at home too.

In The Ribbon Newsletter there is an article with a checklist for a Alzheimer's caregiver.

Oregon Health and Science University

Useful Tips

Duke’s Aging Center Family Support Program at Duke University established the first support groups in NC for families of adults with memory disorders in 1980 with Duke Hospital Auxiliary and NC Foundation grants.

A Yahoo Support Group Member suggested this site that she found useful as it talks about the effects on us of not having emotionally available mothers for whatever reason.

The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers. They have some good publications.

+11/06/06 (Don B.)

The National Institute of Aging provides this information about "Long-Distance Caregiving." It gives 20 ways (questions) for long-distance caregivers.

+11/06/06 (Don B.)

Alzheimer Europe offers this web page about
"Tips for carers "

When using this site on the left side there will be about 7 different topics for you to pick from.

+11/14/06 provides this article call "Caregiver Stress"

+11/17/06 (Jeanette D.)

The SeniorNavigator in Virginia offer this article to help people with who have someone with mobility problems in their home.

+11/17/06 (Jeanette D.)

The Dementia Advocacy Support Network International (DANSI) has a chat room on the website called "DANSI"

You can chat with care givers and persons with various types of dementia. We exchange information, ideas, and often times just sit and visit and get some much needed stress relief!

We meet a 3pm, 9pm and 11pm EST daily.

We have people from all over the States, Canada, New Zealand, Australia, Spain, Brazil, and the UK.

+11/18/06 (Mary M.)

The Twenty-third Psalm website offers a list of different caregiver websites.

+11/19/06 (Jeanette D.)

The Journal Star published this article called, "Immune system test shows coping skills not a magic pill"

+11/25/06 (Ginny B.) provides this article call "Caregiver Stress"

+11/19/07 [D1011]

Caregiver: Recognizing Burnout
A WebMD article

+11/19/07 (Deb)[D1013]

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