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From The Editor |
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 An
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
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Feature Article
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Children as Caregivers
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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
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Guest Column
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Lessons Caregivers Can Learn
From Private Industry
By Sheryl Leary
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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
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Caretips
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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
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Sharing Wisdom - Caregiver Tips
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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
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Caregiver.com
Support Group Directory. Click
here
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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.
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