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July 2008 Meeting

December 2008 Meeting
Support
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Education
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CAREGIVERS / CARE PARTNERS INFORMATION
Couple walking on the beach

“There are only four kinds of people in the world –
those who have been caregivers,
those who are currently caregivers,
those who will be caregivers and
those who will need caregivers”.By Rosalyn Carter

 
Show your appreciation of your caregiver or your care partner and donate to the Columbia Parkinson's Support Group in their honor. 

Mail your donation by check with the name of the caregiver or your care partner you are honoring, and your personal message to them. We will send them a letter acknowledging your donation in their honor, with your personal message.


Columbia Parkinson's Support Group
c/o Carol Baker, Vice President / Treasurer
2 Arrow Lake Road
Irmo SC 29063


If you have any questions or need additional information about donating, please contact:

Carol Baker, Vice President & Treasurer
Telephone 803-781-6193
Email:  caroltbaker@bellsouth.net
There are numerous websites with resource information for Caregiver's / Care Partners.  There is Information about giving care, and most important about Caregiver's / Care Partners receiving care themselves.  Caregivers and Care Partners "always" need to remember and remind themselves that they need take care of themselves first mentally and physically.  If the Caregiver / Care Partner becomes sick, ill, depressed, etc. then they cannot or are unable to care for their loved one.
 
CAREGIVER / CARE PARTNER RESOURCES
Family Caregiver Alliance - National http://www.caregiver.org/caregiver/jsp/home.jsp
Family Caregiver Alliance - South Carolina Resources http://www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2142
Today's Caregiver caregiver.com/
My Parkinson's Caregiver http://www.myparkinsons.org/
National Family Caregiver's Association http://www.thefamilycaregiver.org/caregiving_resources/
Messages To Live By - The Family Caregiver http://www.thefamilycaregiver.org/improving_caregiving/
Family Caregiver Support Network http://www.caregiversupportnetwork.org/default.asp?id=1
Parkinson's Disease Foundation - Support for Care Partners, Family, and Friends http://www.pdf.org/en/caregiving_fam_issues

www.pdf.org/caregivers_month

Today's Caregiver - Parkinson's Disease: Tips for Caregivers http://www.caregiver.com/articles/parkinsons/parkinsons_tips.htm
National Parkinson's Foundation www.parkinson.org/Caregivers
Caring.Com - The Family Caregiver www.caring.com/articles/the-family-caregiver
CaregiverStress.com
24 Hour Support and Resources
www.caregiverstress.com
Caregiver Action Network http://caregiveraction.org
Medline Plus - A Service of NIH (National Institute of Health) www.nlm.nih.gov/medlineplus/caregivers.html

CAREGIVER / CARE PARTNER BOOKS
"Passages In Caregiving" by Gail Sheehy
"Parkinson Disease: Caring and Coping" by Susan Imke, Tudy Hutton, and Susan Loftus - Order from National Parkinson Foundation for FREE www.parkinson.org/Parkinson-s-Disease/PD-Library/NPF-Publications
"Parkinson's Disease - The complete guide for patients and caregivers" by Abraham N. Lieberman, M.D. and Frank L. Williams
"Caring for the Parkinson Patient: A Practical Guide" (Paperback) by J. Thomas Hutton (Editor)
"Caring with Courage and Compassion" by Susan Hamburger
"The Comfort of Home for Parkinson Disease: A Guide for Caregivers" (Paperback) by Maria M. Meyer

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"Caregiving is a loving gift from the heart, but it is also very challenging and demanding. Although caring for someone you love can be very rewarding, it is well known that caregiving can be a tough role, compounded by limited information and resources."  Author Unknown

The "A" List For Caregiver Survival

Assess your own situation realistically. Your situation is unique and what works for one does not necessarily apply to others. And avoiding the real situation only prolongs finding solutions to problems.

A
ccept
the things you can not change. The first step is to come to terms with what can't be changed so that you can work on the things that can be changed to benefit you and your loved one. And remember you can not change others; you cna only change yourself and how you cope with things.

Admit to negative feelings; anger, anxiety, frustration, and burden are all feelings that are possible when you are a caregiver. Once you own them, you can manage them much better. These feelings are a warning signal that you need help. Remember that you are human, too!

Acknowledge your strengths and your limitations. Caregivers often focus on what they think they aren't doing and fail to give credit for what they do. And you do so much!

Acquiesce that you can't control everything! Yet we spend a lot of valuable energy trying to, at a very high cost. Giving up the need to control will help to fine tune your expectations to a realistic level.

Abandon "all-or-nothing" thinking. There is a middle grou
nd where everyone wins something. ("I have to be available to my loved one 24/7 or else I have failed him/her." Think instead, "I will do as much as I can, but I have to take care of myself to be able to provide the care he/she needs.")

Avoid the "Fix-It" syndrome. Another form of control.
("My loved one isn't happy and I must 'fix it' for him/her!")


Appreciate the good times, past and present. The simple act of letting go is a blessing.

Allow others to help. This is not the time to become a martyr. Look to family
, friends, church, and professionals to help carry the load.


Attend to your own needs: emotional, physical, spiritual. Putting your needs first will give you the strength and energy to carry on. Who will provide the care if you are no longer able?

Provided by Debbie Kelly. LMSW, C-ASWCM of Geri-Advocates Care Management of Columbia SC
http://www.geriadvocates.com

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Caregiver Coalition of the Midlands (Columbia, SC)

The nonprofit coalition brings together caregivers and
representatives of professional agencies serving seniors.  The group, founded in 2003, is a volunteer network providing education, support, and advocacy to meet the needs of caregivers of seniors in the Midlands. 

A support phone line for resource information or just a listening ear at (803) 744-8615, answered daily 8 a.m. to 8 p.m.
  Read more here http://tinyurl.com/mvgg6er

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AARP CAREGIVERS RESOURCES

Juggling Work and Caregiving - Click below for Free Book
www.aarp.org/entertainment/books/bookstore/home-family­caregiving/juggling-work-and-caregiving/

www.aarp.org/home-family/caregiving/info-08-2012/important­resources-for-caregivers.html

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Free Book --- Caring and Coping - By Susan Imke, RN, MS., Trudy Hutton, JD., and Sheree Loftus, RN., MSN

Written especially for care partners of people with Parkinson’s disease, this booklet profiles caregiver roles and activities. Topics include what to expect, care options, activities of daily living, legal and financial planning and, of course, special focus on taking care of yourself as the caregiver. Click here to order free book -or- you can download a free PDF http://tinyurl.com/k3b6ffu

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Logo for Parkinson's Disease Caregiver Information

Parkinson's Disease Caregiver Commentary

This website was developed specifically for people who are current or future caregivers to patients with Parkinson's disease.

"We know it is not easy to accept the diagnosis of a chronic illness that relentlessly progresses. Questions flood your mind. Do you die of Parkinson's? What is the prognosis? How long can the patient continue to work? He has changed so much over the past year or two. What took us so long to recognize that something was wrong? Will changes in behavior continue to increase? Crowding these questions are silent pleas for help. The spectre of what lies ahead seems so frightening!"

"Exploring this site, you will find that there is an extensive support network available to you; that Parkinson's is most often an extremely manageable disease; and that with each passing day, the prospect for ever more effective and long-lasting treatments becomes more certain." http://www.myparkinsons.org/

Comment from Dottie - This would be a very good website for both Parkinson patients and caregivers - they have a lot of resources available.. There are a lot of personal stories, as well as practical information about Parkinson's disease. I also enjoyed reading some of the personal stories on the Caregiver Discussion Forum. This site also has a page with a GREAT list of Parkinson books for both the patient and the caregiver. Click Here

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"You may only be one person to the world,
but you may also be the world to one person."
Author Unknown


Family Caregiver Respite Voucher Program

The South Carolina Alzheimer's Chapter provides short-term respite--time away from caregiving responsibility--for full-time family caregivers. A voucher for up to $500 worth of care is available each year.  This program is possible thanks to a grant through the SC Department of Mental Health.
Picture of patient's hands being held by caregiver
NOTE: Although this program is on the Alzheimer's website, it is also available to Parkinson patient caregivers! You can use the same forms on the Alzheimer's website. Members of our support group have received respite vouchers. The Family Caregiver Respite Voucher Program is designed to provide relief to caregivers to lessen the physical, emotional and financial burdens associated with Alzheimer’s and Parkinson's disease. Full time caregivers provide 24 hour a day care for their loved ones often without taking a break.  As a result, the caregiver’s own physical and emotional health often suffers. 

Evidence suggests that elderly spousal caregivers who experience caregiver stress have a mortality rate 63% higher than average. High caregiver stress leads to the increased need to seek long-term care placement for the individual with Alzheimer’s disease.  With a respite voucher, family members are able to arrange care through approved home care agencies, adult day care, or temporary placement in a long term care facility. The approved agency or facility will bill the association for up to $500 worth of services. The respite program is not designed to pay for services on a long term basis and may not be applied retroactively.  The voucher may not be used for private sitters.

CLICK HERE To Learn More and Obtain Application Forms

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Special Online Seminar for National Family Caregivers

Parkinson's Disease Foundation Logo
The following information has been provided by the Parkinson's Disease Foundation

Do you find that because of Parkinson’s symptoms, such as decreased facial movements or speech problems, that you have difficulty communicating with and showing emotions to your partner?  As a partner or health care professional, do you have trouble interpreting these signs?

Join PDF by phone or online for “What’s Missing? Communication and the PD Partnership,” on Tuesday November 30 from 1:00 – 2:00 PM ET.  In this seminar, Teresa Deshefy-Longhi, DN. Sc., R.N., of Fairfield University in Connecticut, will provide tips on tackling communication issues that may arise between a person with PD and his or her care partner. 

This is the first in our new series of PD ExpertBriefings and the second annual online seminar designed to recognize Family Caregivers.

Register now for PDF’s online seminar on “What’s Missing?  Communication and the PD Partnership.” Learn More & Sign Up

Past Online Seminars, Watch Now! Browse PDF’s library of more than 10 seminars, covering nutrition, the PD pipeline, legal issues and more.  You can watch these at your convenience, 24 hours a day, seven days a week.     Browse Past Online Seminars  

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Caring for the Caregiver - From The Northwest Parkinson's Foundation Wellness Center

The following information has been provided by the Northwest Parkinson's Foundation

We are thankful for the help, support and guidance that they bring. Parkinson’s affects the whole family and we sometimes forget about the health and well being of the caregiver. As a caregiver, you may feel overwhelmed or stress at any stage of Parkinson’s. Your health and mood may be at risk.

We are all caregivers, care partners or need a caregiver some time in our life in our life. Therefore this edition, Caring for the Caregiver, is for all of us. 

Visit the Northwest Parkinson’s Foundation Wellness Center, your place for health, hope and healing. Become a member of this community to learn about lifestyle changes, therapies and professionals that can help the patient and their caregivers along the Parkinson's journey.  Sign up to receive Wellness Center updates. Sign Up Here

Visit the Northwest Parkinson's Foundation website and sign up to receive free subscriptions to the latest world news and event news about Parkinson's.

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Page Last Updated November 20, 2013
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