This book is dedicated to the many caregivers to stroke survivors - more than 500 of them - who have contributed, during the past 5 years, to an Internet support group known as the Stroke Caregivers Support Group. This group formed on July 5, 1996, started with less than a dozen caregivers, who banded together to support and nourish one another through this challenging and often hurtful world of stroke. Since the inception of this group, hundreds more stroke caregivers have found us. Some have left and some have stayed, but nearly everyone who has joined us has found other people who understand, care, and help cope by sharing experiences and giving a shoulder to cry on.
We are caregivers to parents, spouses and friends. Our ages range from the 20s to the 80s. We are men and women, faced with a situation almost no one else can understand without walking in our shoes.
After five years, our group decided to share our knowledge and experiences with others who cannot join us online. Hence, the creation of this book. It is currently a work in progress, as material be continually added to it, in order to provide useful, practical advice to caregivers dealing with stroke. Whether new to this plight or an "old-timer" - we hope our tips and ideas will help anyone facing this situation.
The Stroke Caregivers Support Group can be found on the Internet by going to www.strokesafe.org/
Disclaimer: We are not medical professionals, but only seek to share our experiences and layperson opinions. Always confirm specific suggestions with your doctor(s) or other appropriate professional(s).
Editor's note: For the purposes of this manual, the terms "survivor", "victim", "strokee" and "patient" are interchangeable.
The information in this manual is provided by many caregivers, and authored by Joyce Dreslin, who cares for her husband who had a stroke in 1999. The manual was edited and formatted for web presentation by Rex Stocklin, a 44-year old survivor of a 1995 stroke.
Many questions...few answers in common
Stroke...cerebrovascular accident...brain attack!
You can be anywhere, doing anything and Stroke can attack. Stroke doesn't discriminate. It has NO regard for who or where you are or what you are doing. In a matter of seconds you can go from being as next to perfect as one can be to being encased in a body that no longer is able to perform life's most basic functions and everything in between. Various physical and mental abilities leave - sometimes temporarily, sometimes forever.
Stroke has NO regard or respect for age, race, creed, color, intelligence, accomplishments, or the lack thereof. You and those around you may not even be aware of what is happening nor know what to do in this most critical of times. You may have a warning in the form of a TIA (transient ischemic attack, a brief occlusive circulatory event similar to stroke, but usually with no permanent in effect) or a "small stroke," then you may have THE BIG ONE; or you may have THE BIG ONE, with little warning, followed by TIAs. It's a very individualized experience: Stroke is the #1 disabler of Americans, yet seldom two people are affected the same way.
All strokes are caused by an interruption of blood to the brain, so there may be symptoms in common, but since everyone's brain is different, so is practically every stroke. In general, each journey down the road to recovery is different too, and no one can predict at the beginning how rocky or smooth it will be, how long it's going to take, and what lies beyond. The situation may seem quite dark and bleak at the onset, but that may only be because you feel as if you're in a tunnel! Don't give up! A sunny day may be just a short distance down the track.
While, typically, no two strokes nor their resulting effects will appear to be the same, there are really only two basic kinds of stroke causing these highly diverse problems. The blood supply to the brain is disrupted or diminished, and that situation comes about because of (1) blockage (a "block") or (2) bleeding (a "bleed").
The "block" can be a blood clot, fatty material or any foreign matter getting stuck in an artery like debris-laden water through a clogged pipe: at most, only a trickle of blood can get through, and the brain needs more than a trickle to deliver the required amount of oxygen to function properly. These strokes can also be called thrombotic (cerebral thrombosis, a clot formed at the site of blockage), embolic (embolism, a clot, air or foreign object formed elsewhere that travels to the site of blockage) or ischemic (a catchall word for any type of blockage). There is also some evidence, though rare, that a vessel can spasm or contract and shut off blood flow, causing a blockage of blood to the brain.
A "bleed" occurs when a blood vessel bursts, allowing blood to flow into the brain or its surrounding area. Other terms associated with bleeds are hemorrhage and ruptured aneurysm. The diagnosis doctors will generally write on the patient's chart is CVA, or cerebrovascular accident. The description of the CVA includes location of the stroke: cerebrum (right and left hemispheres), brainstem or cerebellum. Though all these and other parts of the brain operate symbiotically and to some degree share functions, there are usually distinct problems associated with each section, where typically, like snowflakes, no two persons are alike. An injury in the right hemisphere will affect the left side of the body, quite often causing total paralysis (right-sided hemiplegia) or partial paralysis (right-sided hemiparesis), and vice versa for the left hemisphere. Because often, the left hemisphere handles language skills, frequently those stricken in the left hemisphere have speech and/or comprehension problems. The brainstem controls vital autonomic human survival functions, so there may be paralysis on both sides and/or a coma, low level of consciousness or impaired breathing. Most balance and coordination is controlled in the cerebellum so abnormal reflexes and balance problems will result from an injury there.
While a stroke is a problem by whatever name you call it, it's important to know what kind of stroke your loved one has had, what the probable cause was, and what symptoms can generally be expected. Early on, have a doctor highlight on a drawing of the brain exactly where the problem occurred and the fancy name assigned to it. Have the doctor explain what body functions are controlled in that part of the brain that has been damaged. You'll have enough problems without having to appear dumb every time a new doctor, nurse, or therapist asks the inevitable: "And what kind of stroke did we have?"
It's alphabet soup time in the emergency room. A CAT (often called just a CT scan ) or MRI scan will usually confirm the diagnosis. Whether CAT or CT, it is pronounced "cat" and but stands for Computerized Axial Tomography or just Computed Tomography. MRI is pronounced em-are-eye and stands for Magnetic Resonance Imaging. Either will help diagnose a hemorrhagic stroke. But in the case of ischemic stroke, often CAT scans are inconclusive, whereas in an MRI, a clot will show up nice and clear, such that a doctor will know if they can safely administer tPA, tissue plasminogen activator, the clot-busting drug. If deemed apropos, it must be administered within three hours of the onset of the stroke, and if mistakenly given to a victim of a bleed-type stroke, death can occur. But, if given quickly under the correct circumstances, tPA can greatly reduce damage from stroke, and even save a life. So it's important that the ABCs of stroke be followed in order.
Later on, the MDs will go about the business of finding out if the stroke was caused by a blood clot, why it happened, and how does the problem get fixed (if it can be fixed). Another stroke is a possibility if the underlying problem isn't solved. Blood clots from the heart, for instance, may be investigated via electrocardiograms (EKG) and echocardiograms (ultrasonic "videos" of the chambers and valves in action, to uncover places where a clot might form). There will be many blood tests: some to rule out clotting disorders, some to measure levels of various enzymes and other metabolic factors and others to monitor the thickness of the blood. Medications may be given to thin the blood and correct irregular heartbeats. Decisions might need to be made as to whether surgery will be required and when. If possible, it's often best to put off surgery until significant recovery from stroke can be effected.
Although there are just two basic types of stroke, there are many causes for stroke, and many tests to determine cause. However, because the brain is so complex, there will be situations where the doctors simply cannot determine the cause, and will treat the patient according to best judgment. BUT, particularly if the stroke victim is not elderly (and more than one-third are not), a diagnosis should be determined and given, and - if the cause is not readily evident - the patient should be undergoing a battery of tests to determine cause. If you are being told that no one knows why your loved one had the stroke, and no diagnostic tests are being performed beyond the CT and MRI, ask why further tests are not being administered.
One thing all stroke victims have in common is that life will be forever changed in some way. In addition, everyone close to the victim will experience a life-altering adjustment. No family member or good friend escapes the reach of this paralyzing agent. And the degree of recovery can be in direct proportion to the amount of support put forth by the family-and-friend network.
Once you've been assured that the stroke's threat to life has waned, be wary of statements from people (often medical professionals) who say there is no recovery after "x" amount of time. For many, recovery continues for years, and sometimes a lifetime. Recovery usually comes more quickly during that first year, but seldom ceases. The brain continues to form new pathways as it heals, and there'll be times when recovery is great and times when it slows.
If you are facing a situation where your loved one has been felled by stroke, it is very important to understand that, in most cases, nobody (not even the most experienced medical professionals) can really predict how much the strokee will or will not recover. No matter what you are told, stroke recovery is very unpredictable and varies with each individual. Try to take each day one at a time. Take joy in each moment of progress, and know that there is always room for hope. Sometimes neurologists and other doctors, even though knowing their territory very well, will communicate through statistics, and their talent in understanding the complexities of the brain does not necessarily extend to understanding the emotional needs of a new strokee and their family. We're complex too! And we don't need to be frightened by someone rattling off the statistics of average recovery or possibility of recurring stroke. As we said, every stroke is different. And we certainly don't want to be thrown into the heap called "average."
It's not a job you apply for. Chances are, if already employed, you don't need or want another job, much less this one. Usually you have no prior experience, you don't know the language, you don't have the proper tools to do it, the pay isn't compensatory to the task, it may come at a time in your life when you don't have the energy required to do the job well, you may be expected to do it without giving up all the other jobs you may have, but there IS job security - as it may last forever!
It's like you're on your way to the restroom at the theater on opening night, and someone says, "YOU!" The star is sick, the conductor hasn't shown up, the stagehands have gone on strike, and you've been tapped to step in and make sure the show goes on for 20 years. If you don't, someone dies (or so you're led to believe). Caregiving isn't like parenthood where you have had nine months to prepare. You were once a kid, and you've seen millions of parents in the act of doing their job prior to having to do it yourself. And it's not a decision you can just say no to, like when you were threatened with not having your kid in Scouts unless you became the scout leader. So? The kid can play soccer and not be a Scout. This is a bigger deal. Stroke offers few options.
Suddenly you're front and center stage in the wrong outfit and totally clueless. Quick, someone give that person a manual!
Please note: All the contents of this document are ©Joyce Dreslin, the author of this book, and are based on the freely shared experiences of caregivers to stroke survivors. Stroke Awareness for Everyone, Inc., (SAFE, Inc.), www.strokesafe.org/, has been granted permission by Joyce Dreslin to distribute this book through the Internet and to individuals upon request. Permission to copy and further distribute this book is granted subject to the following conditions: (1) no charge is made to the recipients; (2) this paragraph is included in its entirety; and (3) for distribution in excess of 20 copies the permission of the copyright holder is sought and obtained. For any questions about this book, its distribution or its copyright, please contact: Caregivers_Handbook@strokesafe.org by e-mail.