Welcome to the Aphasia and Stroke Caregivers Guide
Caregiving is not for sissies! This has been my personal mantra since May of 2000 when my husband had a massive stroke that left him right side paralyzed and with no verbal or written means of communication. Becoming an aphasia and stroke caregiver quickly took me outside of my comfort zone and I repeated that mantra to myself many times in the early months. It helped me to be brave and bold and grow into the job one day at a time. I've learned many things along the way to becoming a seasoned stroke caregiver and eventually a peer mentor.
My purpose in creating this 'Aphasia and Stroke Caregivers Guide' is to share what I've learned and the resources I've found over the years, and will continue to find in the future.
Jean Riva © 2008
Index to the Aphasia and Stroke Caregivers Guide
- Find Caregiver Articles and Resources Here
- The Biggest Caregiver Challenge
- Check Out These Organizations and Goverment Resources
- Best Book to Help With Social Security and Pensions
- Dealing With Acceptance and the Emotional Side of Strokes
- Post-Stroke Sleep Patterns
- Locate Aphasia Articles and Resources Here
- How to Find Local Support and Community Resources
- Specific Therapies You May Not Know About
- Getting Your Survivor on With Life
- How-to Books for One-Handed Living
- The Best Caregiver Advice I Was Given
- Read About my Caregiver Challenges
- Strokes and Aphasia in the Daily News
- Products that Can Make a Caregiver's Life Easier
- Check out These Websites for Disability Products
- Products for One-Handed Grooming
- One-Handed Kitchen Aids
- Find Caregiver & Stroke Survivor Magazines Here
- Have You Read These Stroke Caregiver Books?
- Tip About Drugs
- Other Good Caregiver Squidoo Lenses and Websites to Visit
- How to Find my Personal Blog
- Sign my Guest Book
- CONTENT COPYRIGHT ©
Find Caregiver Articles and Resources Here
Knowledge is Power
- Caregiver Stress: Straight Talk for New Caregiver
- Fifty million Americans care for a loved one who is disabled, chronically ill or fragile from old age. That adds up to a lot of potential for caregiver stress. The family member who inherits the caregiver job after an accident or unforeseen health crisis faces overwhelming pressure.
- Caregivers Advocacy Amor
- This article contains a list of the top ten advocacy tips from Geriatric Care Manager and an Elder Law Attorney, Sue E. Fabian.
- Ten Tips for Caregivers to Sroke Surivors
- If your loved one just had a stroke, you (or a relative) will face the scary prospect of starting your on-the-job training as a new caregiver when he or she comes home from the hospital or stroke rehab center. It will be a long road filled with small and large disappointments, tiny and great rewards.
- The Caregiver Bill of Rights
- Caregivers often get so lost and overwhelmed by their responsibilities and/or twisted around by guilty, that they forget to take care of themselves. If you have a hard time finding yourself anymore, you need to read and believe this Bill of Caregiver Rights from the American Stroke Association's website.
- The Family Caregiver Alliance
- The Family Caregivers Alliance is the public voice of caregivers. Their site is packed with stuff like: a state-by-state search tool to locate resources, caregiver tips and advice, on-line discussions, public policy and research information, fact sheets and publications information, caregiver alerts for state and national policy initiatives, and much more.
- Caregivers' Resources
- Caregiver resources from USA.gov. Topics include government benefits, finding help, long-distance caregiving, legal and end of life issues, and caregiver support.
- How to Create a Family Caregiver's Home Health Emergency Care Plan
- When a family caregiver gets sick it can put their care recipient in peril if an Emergency Care Plan is not already set in place. Unfortunately, most people don't have a written plan and that is a potentially life-threatening mistake.
- Empowering Caregivers
- If you're looking for caregiver moral support this site has a lot to offer in the way of chats rooms, message boards, journaling exercises, prayer circles and more.
- Coping With a Parent's Illness
- This article on About.com is aimed at teenagers with an ill parent. If you have a teen in the family, this article is a good one to suggest he/she read to help you get a dialog going about the stress and insecurities they are facing.
The Biggest Caregiver Challenge
The biggest or hardest challenge a caregiver faces is---as the Serenity Prayer says---finding the courage to accept the things that cannot be changed, the courage to change the things that can be changed and the wisdom to tell the difference.©
Check Out These Organizations and Goverment Resources
Information You Can Use From the U.S. Government and Non-profit Organizations
- Recovery Fact Sheets Series
- This link will take you to the American Stroke Association's page of Recovery Fact Sheets. Over a dozen topic sheets are available including bowel and bladder control, dealing with emotions, dealing with insurance companies, managing fatigue, managing pain, redefining sexuality, sleep disturbances, and more.
- Disability Starter Kit
- This 'Disability Starter Kit' from Social Security will help you and your care recipient get ready for the disability interview or online application. It also provides information about the specific documents and the information that they will request.
- Partnership for Prescription Assistance
- The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free.
- Medicare
- The official U.S. Government site for people with Medicare including pages on determining if you are eligible, applying for disability insurance benefits, and tons of other useful information.
- Center for Medicare and Medicaid Services
- From the U.S. Department of Health and Human Services. The site catalogs CMS programs and information, regulations and guidance, appeals and grievances processes, Medicare coverage data base, and much more.
- Family and Medical Leave Act
- FMLA requires covered employers to provide up to 12weeks of unpaid, job-protected leave to ''eligible''employees for certain family and medical reasons. The FMLA permits employees to take leave on an intermittent basis or to work a reduced schedule under certain circumstances. Find out if Family Leave Act could apply to you.
- Stroke Statistics
- U.S., Canadian and world stroke statistics such as: "28% of [U.S.] people who suffer a stroke in a given year are under age 65" and "about 4.7 million [U.S.] stroke survivors (2.3 million men, 2.4 million women) are alive."
- Kids Have Strokes Too
- The website is sponsored by the Children's Hemiplegia and Stroke Association and it contains a lot of information for parents of children who've had prenatal, in utero, or childhood stroke.
Best Book to Help With Social Security and Pensions
Social Security, Medicare & Government Pensions: Get the Most Out of Your Retirement & Medical Benefits
Amazon Price: (as of 10/13/2008)
Recovery never ends as long as the stroke survivor keeps working at it but remember that sometimes progress is measured in inches, not miles. Dealing With Acceptance and the Emotional Side of Strokes
You May Want to Pass These on to Your Survivor To Read
- Dealing with the Emotional Effects of Strokes
- This classic article by Stephanie Davis is a must-read for all survivors of strokes and their caregivers and/or spouses wishing to understand the emotional changes brought on by a stroke.
- Involuntary Emotional Expression Disorder (IEED)
- The National Stroke Association's page on involuntary emotional expression disorder (IEED)is a big help in understanding the emotional side of strokes. If you deal with sudden and unpredictable episodes of crying, laughing or other emotional displays, check this out. IEED is also called Pseudobulbar Affect, Emotional Lability or emotional incontinence.
- A Survivor's Bill of Rights
- Important guidelines from the American Stroke Foundation for both stroke caregivers and their strokes survivors.
- Acceptance is Not Surrender
- Dr. Vijai P. Sharma, Ph.D, writes about acceptance and how that doesn't mean we have given up fighting or that we are inviting illnesses and disabilities to stick with us forever. "On the contrary," she says, "when you accept your illness, it frees your powers to work on recovery and rehabilitation.
- Avoiding Another Stroke
- This page at the American Stroke Association gives information on the five main factors involved in reducing the risk of having recurring strokes. Getting proactive about these health issues also helps fight the depression that often comes after a stroke.
- Discovery Circles Guide To Organizing and Facilitating Stroke Support Groups
- The National Stroke Association has a wonderful seven chapter guide that can be downloaded to help anyone interested in starting a local stroke support group. Chapters include assessing the community needs, planning, finding sponsors and locations, and much more. Once you set a group up you can also register it on their website.
Post-Stroke Sleep Patterns
If the stroke damage was not severe, a stroke survivor may return to a normal sleep pattern within six months. But if the damage in the sleep-wake regulating parts of the brain were severe, a survivor's sleep pattern may never come back to normal which, of course, becomes the 'new normal' for that survivor. A lot of new stroke caregivers get unnecessarily stressed out because they don't understand that sleep disturbances have a physical basis and aren't necessarily something that their care recipient can help or will away. ©
The heart break of aphasia is a hard pill to swallow. Acceptance is made easier for both the survivor and the caregiver through patience, hard work and humor..
photo by: Natalija Krznaric ©
Locate Aphasia Articles and Resources Here
Learning all Can You About Stroke Related Language Disorders Helps
- How to be a Good Friend to Someone With Aphasia
- Not being able to communicate in the normal way brings on a devastating sense of isolation for people with this disorder and it often causes severe depression. Learning the basic, common sense tips listed in this article can prevent you from unknowingly adding to your friend's loneliness and dejection.
- Today's Word is Aphasia
- Many people within the stroke community have a hard time absorbing the facts about aphasia, that there are many types and degrees of severity depending on the exact location and size of the damage in the brain. Read more of this aphasia article at this link.
- The National Aphasia Association
- This link is to the National Aphasia Association (NAA), a nonprofit organization that promotes public education, research, rehabilitation and support services to assist people with aphasia and their families.
- Aphasia
- This Squidoo lens was put together by Associated Content producer HeartenSoul4u. Her husband is also a stroke survivor dealing with aphasia.
- Speech Class Diary
- This blog contains detailed notes of speech therapies done over a period of several years.
- The Aphasia Hope Foundation
- The AHF is a non-profit foundation that has a two-fold mission: (1) to promote research into the prevention and cure of aphasia and (2) to ensure that all survivors of aphasia and their caregivers are aware of and have access to the best possible treatments available.
- How to Communicate with an Aphasic
- How do you communicate with someone who has an expressive language disorder? This article gives 11 communication techniques that make it easier.
How to Find Local Support and Community Resources
Spending an Afternoon on the Phone Can Pay Off
Also be sure to click on my link to the Family Caregivers Alliance (up above in the first section) and then go to their 'caregivers across the states' link. It will take you to any resources that are available on a state level. ©
Specific Therapies You May Not Know About
Ask Your Doctor if You Think Your Survivor is a Candidate
- VitalStim Treatments for Dysphagia
- "VitalStim Therapy is an innovative therapy for patients suffering from a swallowing disorder called dysphagia. This non-invasive, painless treatment uses controlled neuromuscular electrical stimulation to strengthen the muscles used in swallowing" (Moore,n.d.). This site does a good job of explaining the therapy, research, safety and effectiveness of this FDA approved approach. Many stroke survivors with swallowing issues are good candidates for treatment through their speech pathologists.
- Loss of Visual Field
- Patients who have had a stroke may lose one half of their side vision to the right or left. This type of side vision loss is called "Hemianopsia." This site gives some specific things you can do at home to help with this.
Also Note: For stroke related vision issues, it's best to see a neuro-ophthalmologist for a workup and possible treatment. - Medtronic ITB Therapy
- Intrathecal Baclofen Therapy is used to manage extreme and severe spasticity that can't be helped with other treatments. It's an implanted pump and catheter that is surgically placed beneath the skin to manage tight, stiff muscles associated with traumatic brain injuries.
- SaeboFlex
- The SaeboFlex is innovative and rather new rehabilitation product for individuals suffering from neurological injuries such as strokes that effect hand movements. The site contains lots of information and videos about using the device for hand therapy.
Having a stroke related disability doesn't mean a survivor's social life has to end. You just have to look harder for the opportunities and be willing to make new friends. Getting Your Survivor on With Life
Finding a New Normal is Hard Work but the Pay-Off is Worth the Effort
- Fishing Opportunities for the Physcially Challenged
- Two great organizations are working hard to re-introduce fishing back into the lives of disabled people and to teach fishing to physically challenged individuals who never tried the sport before. Click this link to read a review article about these two organizations.
- Disabled Travelers Guide
- Have wheelchair will travel. Learn the problems (and the solutions) you will encounter when you travel, wheelchair bound, from a couple who has roamed the world. A country by country travel guide for the disabled. Even if you don't want to travel, just reading the site is inspirational and help give you the courage to get out into your own neighborhood more often.
- Wheelin' Sportsmen
- My husband has been on two deer hunts co-sponsored by this wonderful organization and he had the time of his life both times. The Wheelin' Sportsmen (NWTF) and their excellent magazine are dedicated to providing people with disabilities the opportunity to participate in outdoor activities. They have chapters nation-wide.
- Crochet and Embroidery Hoop for One-Handed Sewing
- Use this holder for one-handed knitting, crocheting, darning and embroidery. Clips onto tabletops up to 1" thick. The 13-1/2" long, flexible goose-neck can be adjusted as needed. This is a pricey little device but I'm sure some cleaver people could make something similar for their stroke survivor who'd like to try one-handed hand crafts again.
- Another Hoop for One-Handed Crafts
- Here's another style hoop that helps with one-handed needlework, a little cheaper than the one above but without some of the features you need if you wanted to use it for knitting.
- Hot Fashions in Walking Canes
- You may need a cane but it doesn't have to be boring and medical looking. With a click of your mouse you can find an exact replica of the walking cane used by Dr Gregory House from the Emmy award winning TV show, House MD, and thousands of other hot looking walking canes. Review article of three great cane companies.
- Thumb Thing Book Holder
- This cheap little thing allows a person to hold a book one-handed. The plastic book holder fits on the thumb like a ring and spreads the pages of the book open.
- Dragon Naturally Speaking
- For survivors who have a hard time typing one-handed there is a windows-based speech-recognition software that lets you speak into a mouth piece and the software will turn their verbal words into written words.
- Outdoors Without Limits
- Disabled people are often reminded of their limitations. Outdoors Without Limits is a national organization trying to turn that around and remind them of what they are truly capable of. Their mission is to try to pull together communities committed to help reduce the barriers that prevent disabled people from enjoying the great outdoors. Volunteer, be mentor or a disabled participant.
Tip for Playing Pool One-Handed
Playing one-handed pool from a wheelchair or standing position is made easy with this homemade device. A woodcarving club made several of these for my husband and his speech class buddies, but anyone who is half-way handy could duplicate them. The body measures 3/4" x 1 3/4" x 2" and the wheels are 1 1/2". The hole fits a cue stick. (This cue device is photographed with a pencil.) Wheelchair billiard leagues are also not uncommon and can be found with a Google search. How-to Books for One-Handed Living
Independent Living: Functioning With the Use of One Hand in a Two-Handed World
Amazon Price: (as of 10/13/2008)
Do It One-Handed: A Manual of Daily Living Skills for Stroke Rehabilitation
Amazon Price: (as of 10/13/2008)
The Best Caregiver Advice I Was Given
My husband left therapies behind at 8 months post stroke. He had a two word vocabulary and was wheelchair bound. A PT told me to keep him so busy he didn't have time to feel sorry for himself. I did just that and, for him, it worked beautifully. Despite his disabilities, he's a pretty happy guy. ©
Read About my Caregiver Challenges
Journaling or Blogging are Good Ways to Reduce Stress
- How my Husband's Stroke Changed my Life
- My husband had a massive stroke that left him right side paralyzed and with no verbal or written ability to communicate. An event we thought could never happen to us did happen. Rebuilding our lives was the hardest thing we ever did. This article is 'Best of AC Text for 2007' award winner.
- Universal Design: Building a Wheelchair Accessible Home
- For most of our adult lives my husband and I had wanted to build a house. It took his stroke for us to finally take the plunge. Learn how we did it and the basics of building wheelchair accessible in this article.
- Bobsledding the Staircase
- How many ways are there to get a wheelchair bound husband off from an upper floor of a burning building? This article gives a tongue-in-cheek look at one caregiver/spouse's solution. This is one of many of my AC humor articles about living with someone with aphasia.
- Jean Riva's Assoicated Content Page
- Index to all my AC articles. My main passion in the writing world centers around educating the general population about stroke related language disorders, caregiver issues and growing older---often using humor to do so.
Strokes and Aphasia in the Daily News
- 'The Shadow Factory' by Paul West
- The author of 22 works of fiction and 17 of nonfiction, West had a stroke in June 2004. Since then, he has suffered from Broca's aphasia. ...
- On the Job with Melissa Mahone
- Our population includes everyone from stroke patients with aphasia, or those with head injury, to two-year-olds who are not talking. ...
- Stroke warning ignored
- ''But I have aphasia, which makes it difficult getting my words out. I was right-handed, but now I can print only with my left hand.'' strokes or to do ...
- The Aphasia Center Honors Volunteers 10/9/08
- ... for a recognition luncheon at the center. Aphasia is a loss or reduction in language, speaking, and understanding following a brain injury like a stroke.
Disability produces can make a caregiver's life easier. My favorite product is the elastic shoestrings from Dynamic Living. Once tied, you never untie them making it possible for my one-handed husband to put on his own shoes. Products that Can Make a Caregiver's Life Easier
Products I Can Personally Recommend
- Easy 6 Button TV Remote
- This TV remote is ideal for people who've had strokes and has either dexterity or cognitive issues trying to use a regular remote. It only has six large buttons. From dynamic-living.com
- The Wellness Wizard
- This is a great electric device for people who have to leave their care recipients alone during the day. The Wellness Wizard reminds users to take their medications, etc.---up to twenty personalized messages. Each message plays up to 20 minutes or until a button is pressed. If the button isn't pressed then the caregiver's (or a neighbor's) phone number is dialed to let them know.
- MedReady Inc.
- This is a pill dispenser that gives an alarm when it's pill time and will only open up one compartment at a time that has been pre-programed by the caregiver. MedReady is tamper-proof employing an actual lock and key. It runs on AC with a back-up battery for power outrages. There are four models available.
Check out These Websites for Disability Products
I Love These Companies
- Access to Recreation
- This company has as an awesome selection of products to help disabled people to get back into recreational actives such as bowling, golf, fishing, hunting, cycling, water sports, and travel. They also have a wide selection of products to make daily life easier.
- Active Forever
- This company has a ton of stuff for home health care including dressing aids and devices for one-handed living. The also have special pages for 'stroke and neuro rehab' with article suggestions for what you'll need for safe living in the bathroom, bedroom and kitchen plus mobility aids.
- Dynamic Living
- This company has some interesting solution products to help disabled people. For example: huge TV remotes, gadgets to help with putting on bras one-handed, long handled devices to help you wipe your butt and long handled hair brushes. I especially like their elastic shoelaces, fork-knife for one-handed eating, photo button phone, and cutting boards for one-handed cooks.
Products for One-Handed Grooming
This is just a small sampling of the types of disability products you'll find on the web.
Toilet Paper Aid - 10 "
Amazon Price: $7.95 (as of 10/13/2008)
Hair Dryer Stand
Amazon Price: $26.95 (as of 10/13/2008)
Deluxe One-Handed Nail Care
Amazon Price: (as of 10/13/2008)
One-Handed Kitchen Aids
Be sure to look for other disability products that can make cooking possible again.
Kaiser Bakeware Patisserie One-Handed Flour Sifter
Amazon Price: $18.00 (as of 10/13/2008)
Messermeister Produce Knife, Wood Handle, 4.00 in.
Amazon Price: $46.00 (as of 10/13/2008)
One-Handed Cordless Can Opener
Amazon Price: (as of 10/13/2008)
One-Handed Kitchen Helper Kit
Amazon Price: (as of 10/13/2008)
Stay abreast of what is going on with world of caregiving and with stroke recovery and treatments through these magazines listed below. Find Caregiver & Stroke Survivor Magazines Here
Reading About How Others Overcome Their Challenges is Inspiring
- Stroke Smart Magazine
- 'Stroke Smart' is a FREE bi-monthly magazine published by the National Stroke Association. Once on their site, look for the 'subscribe' link at the top of the page. Or you can call 1-800-787-6537. Contains articles for both stroke survivors and stroke caregivers.
- Stroke Connection Magazine
- 'Stroke Connection' is a FREE bi-monthly magazine published by the American Heart Association and the American Stroke Association. Subscribe through this link or call 1-888-478-7653. Contains articles for both stroke survivors and stroke caregivers.
- Today's Caregiver Magazine
- This bi-monthly magazine addressing the needs and concerns of caregivers, and is dedicated to those caring for loved ones with Alzheimer's, cancer, AIDS, and other threatening diseases.
Have You Read These Stroke Caregiver Books?
Brain, Heal Thyself: A Caregiver's New Approach to Recovery from Stroke, Aneurysm, And Traumatic Brain Injuries by Madonna Siles, Lawrence J. Beuret
When Eve suffered a near-fatal brain aneurysm, Mad more...1 point
Instead of giving up, Siles drew on life experience and her marketing career to develop a rehabilitation program t...
1 pointAfter a Stroke: A Support Book for Patients, Caregivers, Families and Friends (The Family Health Series) by Geoffrey Md Donnan, Carol Burton
A stroke is a devasting occurence in the life of a more...0 points
The Comfort of Home for Stroke: A Guide for Caregivers (Comfort of Home, The) by Maria M. Meyer, Paula Derr
This complete guide helps caregivers, family membe more...0 points
Tip About Drugs
A good website to use to check out medications for adverse reactions and harmful interactions is WebMD.com
Also don't overlook your local pharmacist as an excellent resource when you have questions about drug usage. ©
Other Good Caregiver Squidoo Lenses and Websites to Visit
Not Specifically for Stroke Caregivers but Still Worth a Click
- When the Tables are Turned: Caring for Aging Parents
- Parents are seen through most of your life as the caregivers, but there comes a time when that role reverses and you find yourself in the caregiving role....
- Caregiver Stress: The Impact of too Much Caregiving
- Caregiver Stress is the emotional strain of caregiving for a loved one, or attending to the needs of a child or dependent adult. Caregiving can have a major impact on the caregiver's own health.
- Caregiver Grief
- Grief is important part of the caregiver experience that is often overlooked. According to Grief expert Kenneth Doka, PhD "Grief is a reaction to a loss, but it can be -- and with caregivers grief often is -- a multifaceted reaction."
- Caring.com
- Get help caring for aging parents. Expert information, advice and a caring community on elder finances, housing, health, daily care and legal issues.
- Disaboom
- A support site that covers a wide variety of conditions, disabilities and disability issues plus a MarketPlace where you can shop by zip code. They also have discussion forums, chat rooms, magazine quality articles, blogs and tons of resources.
- The Senior Care Blog
- This blog site includes guest blog entries written by public figures like Tim Russert, Leeza Gibbons, authors, doctors and ordinary caregivers. Not exclusively about stroke caregiving but still a good source for inspiration on handling the tough caregiver role.
How to Find my Personal Blog
From the Planet Aphasia
Some days I blog about stroke, caregiver or disability issues. Other days I might blog philosophical views on searching for meaning in a complicated world, or about something mundane going on in my day-to-day life. Hopefully, on occasion I write something that resonates with others out there in cyberspace.
Fetching RSS feed... please stand bySign my Guest Book
If there's a caregiver topic you'd like to see added here, let me know.
my husband had a stroke july 19 and is still in the hospital.....they say he has aphasia ...he is paralysed on the right side and still not responsive except for sqeezing our hand sometimes........I don't know what to do.......please give any advice.....he is in the process of being weaned off ventilator.............
Posted September 23, 2008
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TheWicker
Interesting lens and nice layout! Thanks for sharing this info. Urban, lensmaster of Anxiety Disorder Treatment Posted July 28, 2008 |
| JohannTheDog
This is a wonderful lens. My Grandmum had Alzheimer's for several years. Caring for a loved one is not easy - I admire you! Woofs, Johann Posted May 09, 2008 |
My aphasia/stroke lens no longer exists here on Squidoo. I moved its contents to Blogger where I blog about life this side of my husband's massive stroke. My blog is called: Post Stroke. Thanks Jean for allowing me to share this.
Posted May 03, 2008
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J-ellen
Awesome lens. Posted April 25, 2008 |
CONTENT COPYRIGHT ©
The contents of this lens is copyrighted and may not be reproduced without the written permission of the lens owner. Feel free, however, to use a short description of this caregivers guide and a link back to it. Most out-going links here go to content that is also covered by copyrights.© JeanRiva 08




