Sunday, May 6, 2018

The Juggling Caregiver

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Retreat & Refresh Stroke Camp
www.strokecamp.org
a division of United Stroke Alliance
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The following was posted in the Stroke Network Newsletter August of 2017. 
http://www.strokenetwork.org
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The Juggling Caregiver
By Claudia R Warner

Keep your Cool!

July was hot. At times it seemed as if we were in August. August is normally hot and humid—but, we have had an abundance of that in July.

So, it’s important to keep your cool during the sizzling days. Since his stroke, Wes is especially sensitive to temperature changes. He just gets tired—and more tired. I think it has something to do with air pressure as well as humidity. Hydration is important during these days, and that’s a problem in our household. BS (before stroke) he would drink lots of water and iced tea during the summer. Well, that’s changed and I have to keep reminding (nagging?) him to drink, drink. I put beverages within easy reach---but he won’t drink them. Iced tea? He won’t touch it. Water? Maybe. Coffee, hot or cold? One cup. Milk? Only on cereal.

In doing research I discovered that after a stroke, this is a common factor. I try to simplify the reasons he needs to drink more to be more comfortable. Guess what? He doesn’t believe me! He thinks that I’m making up the facts that dehydration leads to confusion, forgetfulness, and many other bodily and mental problems. If you think that someone with Aphasia can’t express themselves adamantly, you should hear him!

To handle this problem, I make sure that he eats plenty of “juicy” fruits without mentioning that they have high water content! It works—somewhat. But he is getting some liquid into his system. Hooray for watermelon!!! He will drink Gatorade, but not lemonade. I do admit that he is better at drinking this summer than he has been in the past. He has noted that he feels much better when he keeps the beverage glass empty!

According to AARP, about 40 million family caregivers in the U.S. provide care valued at about $470 billion each year. This caregiving includes assisting with daily activities as well as medication and transportation. This allows people to live at home, preventing costly institutional care. This is so much better for the person as well as family members! And better for taxpayers, also! Caregiving involves a lot of time and energy, as you all know.

Thank goodness a couple of Senators are going to do something about this! Sens. Susan Collings (R-Maine) and Tammy Baldwin (D-Wisc.) have introduced the bipartisan Recognize, Assist, Include Support and Engage (RAISE) Family Caregivers Act, S 1028. It is waiting consideration by the full Senate. Let’s give these ladies kudos for doing this. AARP urges people to call their Senator at 844-259-9354 (toll-free) and urge them to support this important legislation.
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Editor Note:
The (RAISE) Family Caregivers Act, S 1028 has been passed and signed by the President as of January 2018.
Click here for a description: RAISE Family Caregivers Act
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Other important legislation is a bill called the OTC Hearing Aid Act. This would allow easier access to over the counter hearing assistance. Currently, the cost of prescription aids are what prohibits many people from getting the hearing assistance they need. Under the new law, Over the Counter Aids would be a more affordable hearing device and the higher quality prescription aids that are individualized for each user would still be available. Everyone has the right to hear well—and there are over the counter eyeglasses, flu medications, etc. So why not hearing aids?

The bill will be up for a vote soon, so while you are calling your senator about the RAISE Act, why not ask your senator to support the OTC Hearing AID ACT?
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Editor Note:
August 2017 the OTC Hearing AID ACT was passed and signed by the President. 
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Caregivers usually are so busy, we don’t realize that we are a viable part of legislation—we just need to speak up! It is easy to make the call and the person answering is usually very polite. They just need your input! Go for it!

"What dreadful hot weather we have!
It keeps me in a continual state of inelegance."
- Jane Austen


Claudia is the caregiver of her husband, Wes, who had a massive stroke in 2005. They both had retired and moved a few months before his stroke.

The stroke left Wes with acute aphasia, and affected his right side. His sense of humor and determination have brought him remarkable recovery. Formerly he taught high school and community college chemistry, physics and calculus.
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Copyright @August 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.
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