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Fearless Caregiver Newsletter
 Thursday January 6, 2011 - Issue #15

Welcome to the latest edition of the caregiver.com bi-weekly newsletter.

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From The Editor

Gary Barg - Editor-in-chiefAn Interview with Barry Petersen

In a career spanning more than three decades with CBS News, Barry Petersen has reported on everything from wars to Paris fashions and from the return of American jazz to Shanghai, China. His stories have been datelined from virtually every continent.  He has interviewed Hollywood stars including Jimmy Stewart, Bill Cosby, Pierce Brosnan and Sir Anthony Hopkins, as well as the leaders of the Bosnian war who were later tried as war criminals.  He has been honored numerous times for his writing and reporting, and shared both an Alfred I. Dupont-Columbia University Award and a George Foster Peabody Award as part of CBS Radio’s coverage of the democracy uprising at Tiananmen Square.  Recently he wrote a thoroughly compelling book, “Jan’s Story”, about his life as a family caregiver for his wife, Jan, who was also a CBS news professional, after her diagnosis with early onset Alzheimer’s disease. 

Editor-in-Chief Gary Barg sat down with Barry for an open and frank discussion about life as a family caregiver. 

Gary Barg:  The thing about Alzheimer’s that is so insidious is your loved one is still there, but they are not there.  It is the true long goodbye and denial is so easy to do.  Could you talk a little bit about how you walked through that process?

Barry Petersen:  The worst part was realizing afterward what I had done; and not realizing at the time how people were reaching out to help me see it, but I could not.  I guess I am not unusual in that sense.  How could it be Jan? She is young.  She is really vibrant.  She is great.  There is no way she deserves to get this disease.  It cannot be happening. I think that drove a lot of my decisions, some of them good, some of them bad; but it is a huge part of this denial and this disease feeds it, just feeds it...continued

Take care

Gary Barg
Editor-in-Chief
gary@caregiver.com


 

Feature Article

Children as Caregivers

By LeAne Austin, RN

"It’s my responsibility,” he told me. “We’re family.” His name is Joel and he is 11. His 13-year-old brother, Scott, feels the same way, explaining that it’s “just something you do, you take care of each other.” This is not an uncommon theme in children when they live with someone who has a physical disability or a chronic illness. Whether it’s a parent, step-parent, grandparent, sibling or non-relative, children also take on the role of caregivers, though this role is frequently less distinct than that played by the adults in the home....continued


Clinical Trial Spotlight


Guest Column

Lessons Caregivers Can Learn
From Private Industry
By Sheryl Leary

Caregivers experience many feelings including self-doubt, questioning their own abilities and whether or not they are “doing the right thing.” Sometimes caregivers question themselves right down to the core and ask “Why am I doing this?” This is when all caregivers can use some of the lessons from private industry and those successful in business and sales...continued


Caregiver.com Long Term Care Channel

Caretips

Caring for a Child with Diabetes
By  Michelle Reynolds

Children with diabetes are the same as any other children in the need for attention, guidance, and love, but they have special needs when it comes to controlling their diabetes. Diabetes comes in two forms with children almost always diagnosed with Type 1, known as insulin-dependent, requiring regular injections of insulin to regulate the sugar in the blood. There are three things that must be regulated in order to control diabetes...continued


Fearless Caregiver Guides

View sample pages

Sharing Wisdom - Caregiver Tips


Parkinson’s Carenotes
Support for Parkinson’s caregivers @ caregiver.com

The Question:
My husband suffers from Parkinson’s disease and is having more and more trouble getting food into his mouth due to his shaking.  He is not to the point where he will allow me to feed him, so I was wondering what I should do.
 
Some Answers:
Try using tortilla wraps or small pita envelopes that can be stuffed with food, even spaghetti, for ease of eating. These foods are typically eaten by hand and not utensils, so his dignity will be honored.


There are a variety of adapted utensils, plates, bowls, cups, etc. that make eating easier for people with disabilities. Go online and search for companies that sell them.  If your husband needs more assistance finding adapted devices, or hints to make everyday activities easier, contact an occupational therapist for a consultation.


The Question:
My husband has Parkinson's. I don't know what to do to be a good caregiver to him. This is all new to me and I don't understand much about this disease. What can you recommend I do to help him more? He is always hurting, and always stiff. Also, he's always tired and he doesn't want to do much about anything. Please help.
 
Some Answers:
My husband was diagnosed with PD 10 years ago. It took me eight years to get him to attend a support group, but am I glad I did.  I attend all the meetings with him, and we have learned more in the past two years than in the eight years before.  Now that I understand the disease better, it is easier (I won't say easy) to deal with his symptoms. I can also talk with his doctors and understand them better than before. Try to find a support group in your area.  As far as your husband's complaints—mine's much the same way. If you can get him to do any exercise at all, that is the best thing in dealing with this disease. Tai Chi is the best, and some can be done while sitting if his balance is too bad. It helps the stiffness a lot. Yoga is also a good exercise, but can be more difficult than Tai Chi with PD. Lack of interest and an almost ADD type of behavior is fairly typical. Good luck and learn as much as you can. That's your best defense.
 


My husband has had Parkinson’s disease for 15 years. It is important for your husband to get physical therapy on a weekly basis to help alleviate the rigidity. Massage therapy is also very helpful, but can be expensive.
 


My husband is in the latter stages of Parkinson's and Shy-Drager syndrome (multiple system atrophy), and we only learned about it two years ago. For me, it became very difficult as a 24-hour caregiver, but I would not have done it any other way. Just love your guy and be glad that you are blessed with him, and always let him know that. Find things that you two can enjoy together, and perhaps with a couple of friends occasionally, and "mellow out." We have been so fortunate to have a caring church family who has lifted both of us up many, many times. Enjoy your man, health problems and all; make all the sweet memories that you can. Get some rest yourself and get out with others; this is a must! It will help you keep your own mental and physical health. My husband has had severe loss of memory and other abilities, but of late has had a resurgence of both and we have had some really wonderful times together at the nursing home where he has been for the past year. The memories come and go, but the same sweet precious person is there. As time goes by, you will appreciate that so much. God bless you, dear sister in caring.

 


The best ideas and solutions for taking care of  your  loved one often come from other caregivers.  Please post your ideas and insights and we will share them with your fellow caregivers.
http://www.caregiver.com/sharing_wisdom/index.htm


 

Caregiver.com Support Group Directory. Click here for information about any caregiver support groups in your area.

Caregivers need your help. Please add information about your local support groups to our Support Group Directory. Include the name of the group, where and when it meets, city and state and support group leader contact information.


Have an idea for an article? We are always looking for contributing writers. For more information contact editor@caregiver.com

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Inside This Issue:

From the Editor
An Interview with
Barry Petersen

Feature Article
Children as Caregivers

Guest Column
Lessons Caregivers Can Learn From Private Industry    

Caretips
Caring for a Child with Diabetes
Sharing Wisdom
 

 

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Educate yourself & other caregivers on any prescription drugs given to a loved one. The internet is wonderful to help you...continued

 



 

 

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