Tips and Info for Caregivers

The following article is reproduced from the Stroke Wise web site (www.strokewise.info) with Dave Valiulis' permission. I encourage you to visit his site as he has a lot of excellent articles related to strokes. You may click on any highlighted words below to be taken to a website for more information. When you exit that website you will be returned to this one automatically.

Caregivers for stoke survivors

Tips and info for stroke caregivers

There are over 2.2 million stoke caregivers in the U.S.

General tips for caregivers:

• Help the individual become involved outside the home and in leisure activities. 
• Encourage as much independence as possible. 
• Let the survivor make the decisions.

Be mindful of you too.
The rewards of caregiving include an improved appreciation of life, feeling needed or appreciated, and the development of a more positive outlook. But caregiving can also be a tremendous burden. It can result in psychological distress, decreased social contact and activity, depression, stress, and an overall decrease in quality of life. If you see any of these things happening to you, try these tips:
Seek out caregiver support groups.
Do not try to do caregiving 24 hours a day. Take a break.
Be sure to take care of you. Eat, take your medications, exercise, rest, go shopping, have some fun.
Ask for help from family, friends, or community organizations.
Remember, you are a caregiver, not a slave.
Try to keep a positive attitude. This is an important coping strategy.

Tips for dealing with people with aphasia: 

• Maintain a natural conversational manner appropriate for an adult. If needed, you can simplify your speech by using short, uncomplicated sentences; but don't talk "down" to them. Do not use "baby talk." 
• Don't raise your voice; they are not hard of hearing. 
• Minimize distractions and background noise, such as a blaring radio, whenever possible. 
• Be patient. Repeat the content words or write them down as needed. 
• Include the person in conversations and encourage any type of communication, whether it is speech, gesture, pointing, or drawing. 
• Avoid correcting the individual's speech, unless they ask for help. 
• Do not finish the person's sentence or train of thought for them, unless asked. 
• Allow the person plenty of time to talk. 
• Don't pretend you understood what was said if you did not. 
• A good video of "aphasia etiquette" comes from the Stroke Association of Great Britain. 

Click to watch video - Ten Guidelines for Interacting with a Stroke Survivor

Publications, handbooks, and newsletters:

• A Caregiver Guide to Stroke is available from the National Stroke Association.
• A 42-page Stroke Caregivers Handbook is downloadable for free in PDF format. You can also download a text-only version of individual chapters, with no pictures or special formatting.
• You can sign up for a free monthly caregiver e-newsletter or order the free pamphlet Resources for Stroke Family Caregivers from the American Heart Association.
• Tips and tools for everyday living: A guide for stroke caregivers by the Heart and Stroke Foundation of Canada.

Stroke-related associations and websites:

• Careliving Community is a social network designed exclusively for caregivers and family members of stroke survivors.
• See the Internet Stroke Center page for general info for caregivers.
• An excellent page comes from the American Stroke Association.
• See the Stroke Family Caregiving for African-Americans, which contains useful information for all caregivers.
• CaringBridge provides free websites to caregivers to easily post updates and progress for the loved one. This reduces the time and emotional energy spent on repeated phone calls and emails and keeps everyone informed with the same, accurate information.
• The list of Caregiver Rights might help you re-focus some time and energy on caring for yourself and let you know that it's not unusual to feel under-appreciated, frustrated, left out and even angry.

General and local caregiving sites:

• Caregiver support programs in each of the 50 states and the District of Columbia.
• Visit Monica Vest Wheeler's page on Facebook or read her blog.
• Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. It also oversees Link2Care, an Internet support and information system for clients of California.
• In San Diego, the Southern Caregiver Resource Center helps families and caregivers by providing services for adults with chronic and/or disabling conditions.
• Caregiver Resource Network contains resource materials as well as programs available in Michigan.
• Visit the National Family Caregivers Association.
• See the Well Spouse website for the many facets in supporting a loved one.

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Chime Strokers play Springfield!

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff 

Our Chime Strokers choir can make your heart and soul sing … any time anywhere.  I may have memorized most of their tunes, but I hear and learn something new every time I see them in action.

This unique "collection" of stroke survivors and caregivers bring magic to tone chimes and everyone in their audience. The simplicity, yet challenge, of the chimes give our survivors a brain workout beyond compare. I've witnessed so many amazing miracles at all of the Retreat & Refresh Stroke Camps where the chimes have been brought into play. Yes, pun intended :-)

Our Chime Strokers, created nearly five years ago to promote a little education and a LOT of fun and friendship, went to Springfield recently to represent Stroke Camp when State Senator Dave Koehler bestowed an official proclamation recognizing Stroke Camp's contribution to the quality of life for stroke survivors and caregivers across the state and now the country. Our executive director Marylee Nunley was bursting with pride as always.

Our performers go way beyond the call of duty to give their time and energy to rehearsals and performances year-round. They are individuals whose lives have been deeply and profoundly affected by stroke: caregiver Monica Mugavero, caregiver Tony Ozella and survivor Pat Ozella, caregiver Ruthanne Scott and survivor Bob Scott, caregiver Carol Lee, and survivors Randy Randall, John Nunley, Dawn Robinson, Mert Berlett, Bill Hart, and Sue Johnson.

And none of this would be possible without the unwavering dedication, talent and pure love of co-directors and music therapists Susan Bock and Lauren Kramer. What they give of themselves can't be described in words.

Keep on eye on our Chime Strokers! You never know where they're going to perform next!

State Senator Dave Koehler & Stroke Camp Executive Director Marylee Nunley

Senator Koehler and survivor Mert Berlett

Senator Koehler and survivor Randy Randall

Senator Koehler and survivor John Nunley

Senator Koehler and caregiver Tony Ozella, and survivors Pat Ozella, Randy Randall and Sue Johnson

Senator Koehler and caregivers Monica Mugavero and Carol Lee, and survivor Dawn Robinson

Senator Koehler and Chime Stokers' co-director Susan Bock

Chime Strokers co-director Lauren Kramer

Always a winner

Always a winner with Strike Out Stroke™

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff

Rain may have chased away some people, but when it's Strike Out Stroke™ night in Peoria, IL, hometown to Retreat & Refresh Stroke Camp™, nothing keeps away our devoted stroke survivors, caregivers and volunteers who are determined to Strike Out Stroke™ in more ways than one.

The start of the game was delayed two hours by pesky rain clouds as I waited to take photos of our "Dream Team" of survivors take the field. The arrival of our fifth grade poster winner, Jonah Boston, in the Lifeflight helicopter was cancelled for safety reasons. So he had to enter the gates like the rest of us, but he did have that lucky pass to the mound to throw out the first pitch.

Our Chime Strokers were also supposed to be on the field to perform the national anthem, but instead had to settle for a dry spot under the awning along the first base line. Safety again was the primary concern as trying to maneuver wheelchairs and walkers would have been a worry in the wet and muddy grass on the field. However, they stirred our hearts and patriotism under the incredible voice of Monica Mugavero and directors Susan Bock and Lauren Kramer. I certainly had goosebumps from my vantage point on the field, and it wasn't from the cool evening breeze!

What will stay with me from that evening will be the images of love and friendship and laughter that our local survivors and caregivers share. Smiles were evident everywhere … because dreams, like the creation of Strike Out Stroke™ can come true … not only for a fun time at the ballgame but for the far-reaching impact of teaching the public the warning signs of stroke. 

And when I see a stroke survivor put their hand over their heart for the national anthem, how can I not love and applaud and embrace them even more? Yes, Retreat & Refresh Stroke Camp is the ultimate team of winners when partnered with Strike Out Stroke …

May good weather and open hearts greet everyone for what will be an amazing season of Strike Out Stroke™ all over this wonderful country! Stay tuned!

Cooking With Children

Before I begin this week's article:

This week I am presenting the video of the Strike Out Stroke event at the LA Angels game in Anaheim, California:  Click Here
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Many of you have small children, or grandchildren, perhaps. Have you ever wondered what you could do to bond with them or teach them new skills, and do something healthy with and for them at the same time? Well this article will propose a way to do that while keeping in mind one of the major factors that will contribute to stroke prevention - eating healthy food. 

The following is adapted from the U.S. Department of Agriculture, "Tips For Using the Food Guide Pyramid for Young Children 4 to 6 Years Old", 1999.    

Get Them Interested

Cooking with your children is a good way to help them develop healthy eating habits. Most children enjoy helping in the kitchen. While they help you prepare a meal, you can talk to them about healthy foods. Children like to eat the food they make. This is also a good way to get them to try new healthy foods.

LET THEM HELP 

You can show your children how to help you prepare meals. You know your child's skill level. Compare it to the recommendations below and see if they match. If not maybe you can help raise them with some hands on experience from an expert chef (that's you). 

Here are ways that children of different ages can help in the kitchen:

2- year-olds can: 
• Wipe tabletops.
• Scrub and rinse fruits and vegetables.
• Tear lettuce or greens.
• Break cauliflower.
• Bring ingredients from one place to another.

3- year-olds can: 
• Wrap potatoes in foil for baking.
• Knead and shape dough.
• Mix ingredients.
• Pour liquids.
• Shake liquids in a covered container.
• Apply soft spreads.
• Put things in the trash.

4- year-olds can: 
• Peel oranges or hard-boiled eggs.
• Mash bananas or cooked beans with a fork.
• Cut parsley and green onions with kid-safe scissors.
• Set the table.

5- to 6-year-olds can: 
• Measure ingredients.
• Use an egg beater.

Be sure to have children wash their hands before and after helping in the kitchen. 

Be patient with spills and mistakes. Remember that the goal is to help your children learn about healthy eating.

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LET THEM BE CREATIVE 

Set out three or four healthy foods, and let your children make a new snack or sandwich from them. Use foods your children can eat without choking.

Start with: 

• A new kind of bread (whole grain or rye) 

• Whole grain crackers or graham crackers 

• Mini rice cakes or popcorn cakes 

• Small bagels 

• Small pieces of pita bread 

Spreads could include: 

• Low-fat cream cheese or cheese spread 

• Low-fat peanut butter 

• Bean dip 

• Jelly or jam with no sugar added 

Toppings could include: 

• Slices of apple or banana 

• Raisins or other dried fruit 

• Strawberries 

• Slices of cucumber or squash 

• Cherry tomatoes cut in small pieces 

• Slices of cheese or hard-boiled egg 

And here's a very important part of this exercise: As you help your children make the new snack or sandwich, talk about why it is healthy. Point out the different food groups that are included in the snack or sandwich. Explain that eating a variety of foods is healthy. Ask why the snack or sandwich tastes good. Is it sweet, juicy , chewy, or crunchy?

I think you can have a lot of fun doing this with your children and your children will have a lot of fun, too. Think of the memories you will be building. 
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Tools and Tricks for the Stroke Survivor

The following article was written and published on the StrokeNet Newsletter web site by David Wasielewski.

David is a stroke survivor and member of the StrokeNet staff. You may visit the StrokeNet web site by clicking on this link: www.strokenetwork.org 

Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with our readers, with permission from the StrokeNet staff, of course. 

by David Wasielewski

Tools and Tricks for the Stroke Survivor

Regular readers of my column might notice that the articles are normally focused on the larger social and psychological adjustment after stroke. I was recently reminded that there are many small day to day struggles to be overcome as well in order to make our lives livable. The challenge of being one handed (I am hemiplegic) forces many small adjustments, tricks and a search for tools that address them. I’ll try to share some of my discoveries here. Caregivers should pay particular attention as they will need to bring these tools into the house or consider these new rules when buying clothes and supplies for their survivor or furnishing the house.

RRSC editor note: hemiplegic means the complete parylisis of one side of the body. Not all survivors suffer from something this severe but many do.

Dressing, clothes and closets: Velcro is an essential for the one handed. Velcro strap shoes make getting dressed much easier. I understand that there are tricks for one handed shoe tying which I have never mastered, but Velcro is quick and easy. New Balance and Propet offer comfortable walking shoes that are easy to manage, durable and good looking for all occasions and seasons.

Buttons are preferable to zippers on all garments when shopping for easy to manage clothes (attention caregivers!!). I have found that ½ zip pullovers are fine but full zip clothes are a challenge. For those in doubt, try to zip up a winter coat with one hand. Winter might be over before you accomplish this task. Speaking of winter clothes, oversized mittens are preferable to gloves. It is nearly impossible to manage gloves with a spastic hand. Belts are often difficult to manage with one hand. A bathrobe with a button or a Velcro closure can make showers and dressing and showering easier to manage.

Closets: Hangars are almost impossible to manage with one hand. Try it and see. For frequently used items a series of coat hooks on the wall in the closet are essential and in most cases easy to install. For easy coat access, consider a hall coat tree.

Showers, baths: Many hemiplegics can manage dressing independently if a chair or bench is provided for that purpose. A small bench or chair in the bathroom or just outside the bathroom provides support for the survivor to be able to dress and undress on their own. A walk in shower with proper grab bars is essential for hemiplegic folks. Make sure a professional installs the bars to ensure proper safety.

Pump bottles for soap, shampoo, toothpaste etc. make one- handed bathroom tasks much easier. Towel hooks on the wall are much easier to manage with one hand than towel bars. Let your survivor choose the most comfortable positons for the bars, benches and hooks. Each survivor will have particular preferences depending on their affected side and strengths. It also gives them an opportunity to participate in and plan their own environment. Working on a project like this can be empowering and a confidence builder for the survivor.

Stairs and walkways: It is often possible for hemiplegic survivors to navigate stairs. The limiting factor here is that strong railings need to be present on BOTH sides of the staircase. Make sure the railings are properly installed to support the survivor. A Stairmaster might also be a consideration if stair-climbing is not possible. Look at any access walks to your house. Sloped walkways and outdoor stairs may need railings as well. Any sloped walkway, even if smooth, will present a particular challenge to a survivor with hemiplegia.

Scissors: A good pair of scissors is an essential tool for the one handed. Scissors allow the survivor to manage opening mail, accessing boxed foods like cereal and a myriad of other tasks. Mine are always on hand for help in the house

Kitchen: Eating can be a particularly challenging and frustrating experience for the one – handed. The ability to use a knife and fork is often lost. Cutting meats and other foods becomes impossible. 

A rocker knife is essential for this challenge.

Opening cans and jars is new challenge with one hand. 

The ‘spill not’ jar opener is an invaluable device for navigating the kitchen one handed.

Google kitchen disability aids for a variety of other devices to help with eating and cooking.

I have found that folks with these challenges are often on the lookout for devices that can make life easier. On a recent visit to a friend’s house we discovered a battery powered wine bottle opener that I could operate. Not an essential tool but one that allows me to be a proper host when the occasion arises. 

Google “Rabbit wine opener”:

Discovering these new tools can be an important project for the caregiver and survivor to work on together. Caregivers should involve the survivor in the process as much as possible as it helps empower the survivor to take an active role in structuring their new lives. It gives both parties some sense of control over their new and challenging circumstances. Finding and sharing these unique solutions can be an interesting exercise at support groups.

RRSC editor note: the above links in blue are Amazon.com links that may not exist when the item sells out. We do not benefit from the sales of any of these items. However, if you do want to purchase them (or anything on Amazon, for that matter), use smile.amazon.com and name us as the charity and Amazon will donate a percentage of the sale to us. This does not increase the item price to you, but does benefit us through Amazon's generosity.

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Thank you David and StrokeNet for allowing me to share your articles with our readers.