When the new stroke victim is in the hospital, probably first in intensive care and then in regular care, that is when the designated caregiver has to step to (or be pushed up to) the plate so the game can go on. In this age of insurance cutbacks and managed health care, every hospital patient needs an advocate to help look out for their well-being. A stroke victim, because they have suffered an attack to the brain, may have more than the usual amount of difficulty with communication, comprehension and of course, mobility. A team of advocates is needed!
First job assignment: Delegate assistant advocates.
Chances are that during this stage, friends and family will come to your aid. There are cards, flowers, concern, attention, food, visitors and offers of help. TAKE IT ALL! Especially the offers of help. Line up people to be with the patient, in shifts, to take notes when doctors appear, to remind nurses and aides that if they had read the chart, they'd know this patient can't move one side, etc. Do NOT try to do it all yourself. This is going to be a long haul. You'll need to conserve your energy and get plenty of sleep (ask your doctor about drugs to assist in sleep, if necessary, to insure this happens). Don't allow someone to get rid of their guilt and sense of duty by just dropping off one lasagna. The answer to "Is there anything I can do?" is ALWAYS "Yes." (Freeze the lasagna for use later. You may get ten the first week, but chances are you won't see another one for the next ten years.) Don't forget to thank profusely as you come up with another small task to be done. "Pick up stamps at the post office, take in dry cleaning, etc. PLEASE!"
Keep a notebook. Better, keep two notebooks. Label them appropriately. Caregiving 101 will be the toughest course you'll ever study. Invest in a three-hole punch if you don't have one, a couple of very fat three-ring binders, and some index tab separators. Save every scrap of paper and document. Use one notebook for notes (with names, dates and times) from every encounter with any and all medical personnel. You may also want to utilize a tape recorder (ask permission to use it - "Can I record this? I always get things mixed up!") to have a more accurate record of doctors' orders or answers to questions you ask. It can also save a lot of grief when coming home with a survivor who "remembers exactly" what the doctor said.
Use the other notebook for all medical records & correspondence, insurance receipts and medical bills. You are entitled to copies of all test results and medical records. Sign a release, and keep them in the notebook. Always keep an up-to-date list of all medications, dosages and prescription filling histories handy. It will be needed every time you see a doctor, therapist, or have to have the stroke victim hospitalized. It might help to create this list on a computer, so it's easy to update and print. Likewise, a scanner can be used to scan and print out copies of medical bills to send to the insurance company. Saves making copies, and keeping a backup on a floppy disk gives one extra place to look for receipts that are "lost."
And, if all this organization is simply too much for you at this very stressful time - see if someone can help with this task, else, find yourself a big box, and put EVERY scrap of paper and every record into that box, and deal with it when your head is clearer. Store the box in an easy-to-find place. There will come a time when you will be glad you took five minutes to do this.
Do NOT pay any bills before the insurance company goes through their entire approval process - which may be months in the making. If the insurance company disallows any payment, it is YOUR RIGHT TO APPEAL that judgment. One major insurance provider admitted that 98% of all judgments are reversed when appealed. Once you pay $1 of a bill, you are claiming full responsibility for that bill, and once you pay a doctor or hospital yourself, you will spend years trying to get that money back from the insurance company, if at all.
This is no time to be shy and demure. There are times in life when it's smart to pretend to know what you don't. Not now. In the schematic of a stroke time line, you're the equivalent of a two-year-old - so act like one. Ask "Why?" "How come?" and "What for?" a hundred times a day. Throw a tantrum if things don't go the way you think they should. Be a tattletale and go to authority figures if those beneath them misbehave. (Also give thank you's in the form of hugs and complimentary notes to those in charge, telling them who was especially good.) If you can't transform yourself into an aggressive, in-your-face, don't-give-me-any-guff type of personality, call in a "big brother" to help fight your battles. But don't be a whiner. Nobody likes a whiner at any age. You are fighting for the life of someone you love, and you deserve respect from everyone.
Stroke may be hard for you to swallow emotionally, but, physically speaking, swallowing may be the survivor's first problem. Muscles on one side may not be working properly, and the opposite of what you think is true: the thinner the consistency, the harder it is to go down. Water and thin liquids come back up or, worse, aspirate into the lungs. Foods may need to be puréed until a swallow test can be done. It's sort of like a moving X-ray where therapists watch as dyed liquids are ingested to see where they go - successfully down the esophagus, or unsuccessfully elsewhere. Only after they pass the test should a stroke victim be allowed real food. If they flunk, don't despair! That doesn't mean they'll never eat again. The swallow muscles can often be therapeutically rehabilitated just as the bigger ones can.
Physical, occupational and speech therapies should begin in the hospital, as soon as the patient is medically stable enough to tolerate them. To reduce their descriptions to the lowest possible terms, physical therapy takes care of legs, occupational therapy takes care of the hands and arms and personal care skills, and speech takes care of verbal communications.
Occupational therapy may be the hardest concept to figure out because at this stage it has nothing to do with one's occupation. It doesn't matter if the patient is a doctor, lawyer or Indian chief. After a stroke, their main job is to learn how to dress, brush teeth, and learn life's basic skills, coping with the disabilities the stroke has handed them. That's the job of the occupational therapist.
It's important that all nonworking parts be put through the motions they would do if they were working normally. These are called Range of Motion (ROM) exercises. Impress the therapists by asking them to teach you how to administer these. They can also give you instructional sheets to keep in your notebook. This will be your first hands-on job since you're the one with two working hands. Jump in and keep the patient's limbs loose! Besides being valuable physically, it will send a strong message of love and commitment that will be missed by no one. If and when the brain recovers enough to tell those limbs to move again, they must be ready to respond. "I forgot" is seldom a good excuse in any situation, so move on in and don't allow muscles to forget their moves.
Riddle: What is life's greatest luxury that you will have more of while the stroke victim is in the hospital, but you won't realize it until the patient is home and then you'll have none of it. Answer: Time!
Take advantage of that little lifesaver on the hospital nightstand called the telephone and get your lives in order before time runs out. Here's who should be called to hear your call for HELP:
The hospital social worker:
Do you have a Durable Power of Attorney in your loved one's will? You will need both a regular (financial) Durable Power of Attorney AND a Medical Power of Attorney. Get the social worker to access the hospital's Notary Public (this should be free) and have these two forms signed. Do not leave an ending date for the term of the contract. This may legally be left open. Have the hospital put this in the file and ask them to make it part of the PERMANENT medical file. Even if you have these forms at home or in your safety deposit box, do this anyway and save time. If things go bad, you will not have time for attorneys to review forms. Be prepared!
The employer of the stroke survivor:
Speak to the immediate supervisor and to the Human Resources person-in-charge. Get names and phone numbers. Discuss Long-Term Disability, Sick Leave, and Social Security Disability with them. (The social worker above may be helpful in this regard as well.) Find out how much they can do for you, and let them do it. Remember the answer to the question, "Can I do something for you?" is always a resounding "Yes!"
Social Security office:
Look in the phone book for the local phone number, or you can find Social Security online at http://www.ssa.gov/. Find out what benefits are available and how to go about applying for them. This process takes months. The paperwork is monumental, but once the application is approved, the benefits pay back to the date of the beginning of the disability. Get it going while you're sitting bedside.
Insurance company:
Get the name and DIRECT phone number of a caseworker you can call regularly. They may become your best friend. They may cringe every time they hear your name, but recognition is better than starting anew every time you have to call.
And while you're sitting in the hospital room, look around and see how it can be made more cheery. On a bulletin board, display get-well cards, post photos of family members, your home, favorite pets, a beloved truck, children's or grandchildren's art work. Bring in a little radio set on their favorite station, a Walkman with tapes of music they like is a good idea (make sure it's durable - they land on the floor a lot). A calendar with birthdays and holidays noted is nice, and celebrating all is even nicer. Make a sign-in sheet for visitors so you know who came and when. You can't rely on the patient's memory or ability to tell you who was there. Sign in yourself and sign some guilt away later on when you count up how often you were there for your strokee!
That dreadful call button may cause more problems and frustration than all the stroke disabilities put together. 'Push the button, get help' may seem elementary, my dear Watson, but to a stroke survivor it can be as complex as calculus. It doesn't help that those on the helping end of the button frequently forget that the strokee has a communication problem to begin with. Mastering the call button may take you the equivalent of a Master's degree in teaching skills. And then the staff shift changes, and you have to start all over again.
First, make sure the button is located on the working side of the patient so they can reach it. It's on a cord, tie it to the bed rail. Twist ties work well for this purpose. Put up a sign reminding aides that one side (of the patient) is not working, and call buttons, water pitcher, etc., must remain on working side. In many areas of the country, hospital workers are often of Hispanic origin and speak limited English - if you have a friend who speaks Spanish, ask them to help you make signs in Spanish as well, if this is appropriate. Another sign saying "Unable to Speak" will be helpful because big signs will be read before charts. Sometimes it seems charts are never read.
Make sure there's a note at the desk receiving the call (from the call button) that your strokee may not be able to respond to just a verbal "May I help you?" Practice, practice, practice with the patient to see that they know how to use it, when to use it, and what the response will be. If the button is located on the same device with the TV controls, put apologies on that list of practice items. Approximately 150 times a day they will push the help button when they're trying to change the channel!
Aphasia: Difficulty Communicating
Aphasia is the medical term used to indicate a communication impairment that results in an inability to express oneself by speaking, writing or gesturing (expressive aphasia) and/or an inability to understand written or spoken language (receptive aphasia). This typically happens to those who suffer a stroke that affects their body's right side. The range of severity varies from patient to patient. Each person with aphasia has a unique set of speech and language problems. It may mean complete loss of speech (severe aphasia) to just an occasional difficulty finding the right word or using an incorrect word (mild expressive aphasia). Receptive aphasia problems may range from an occasional misunderstanding of a word to a complete inability to understand all words. Most individuals with aphasia are competent mentally and have not lost intelligence or common sense, which makes aphasia a very frustrating disorder. They know what they want to say; they just have trouble putting their thoughts into speech or writing.
The good news is that aphasia doesn't get worse unless there's another stroke or brain injury. Almost all people improve. How much and when it will happen falls into the "each strokee is different" category. The primary goal is to learn to cope with the problem and communicate effectively despite the aphasia. To reach this goal, a speech therapist is an absolute must.
Some helpful hints for dealing with aphasia:
Subluxation: Dislocated Shoulder
Support the shoulder of the affected side, don't let it be left hanging, the arm's "dead" weight will cause it to pull out. Hospital therapists should be providing for this - if they are not, be sure to inquire as to why not. Have an occupational or physical therapist explain and demonstrate the proper resting of the affected arm on a pillow to aid in subluxation prevention.
Skin Breakdown
Protect skin from breaking down by moving the patient often, keeping the skin clean, aerated and dry, and having any red spots or sores treated as soon as they appear. The use of a bedpan frequently may cause skin irritation. Adult diapers may be a better idea.
Loss of Bladder/Bowel Function
Often after a stroke, survivors find it difficult to pass urine or are unable to control when the urine is passed, and the same is often true of bowel movements. While this could be caused by damage to the part of the brain that governs control, it may not be a problem of incontinence, but a problem of communication. The patient may be unable to communicate the need to empty their bladder. It is important that the caregiver be sensitive to this situation and work with the nurses in charge to reestablish a normal pattern.
Depression/Emotional Issues
Stroke, like death, represents a catastrophic personal loss. The only way to heal, to be able to cope, is through a grieving process of several stages. There is (in no particular order) shock, anger, relief, depression, denial, mourning, acceptance, and a moving onward. Grief is a very personal experience that takes time and work. And there is no socially acceptable way to grieve for a person who hasn't died. Though the patient should be encouraged to grieve their loss, it is a natural catharis and therapeutic towards their getting on with life. Stroke can be more devastating than death because there is a living reminder of the person who used to be. Depression is the most common normal reaction, and anger and frustration fall right into the line. For stroke survivors, the depression issue is often increased because stroke can greatly alter brain chemistry - and literally depletes the survivor's brain of the natural chemicals that control depression. The only way to get beyond feelings of anger, guilt and sadness is to experience and express them, and to seek medical advice about possible antidepressants for the patient (and for yourself for that matter; you might be in grief yourself and many of these principles might apply to you too). Gradually, with compromise, understanding and patience, and with the help of family, friends, doctors, counselors and even antidepressant drugs, coping will take place.
It's important for the caregiver to know that by virtue of the fact that you love the stroke victim, you have everything you need to make the right decisions that must be made during emergency room, intensive care, and acute care in the hospital. Despite the shock, sorrow, and terror you are feeling, the caregiver must ask many questions, challenge medical advice, research alternative options, get more opinions and act on your own common sense. It certainly doesn't make it easier that you're physically exhausted and emotionally zapped. Be aware of the possibility that the doctors, nurses and therapists do not know it all. Insurance limitations and professional ego, and often NOT the best care possible for the stroke patient, may be the guiding factor in their decisions. Only the caregiver's common sense, commitment to the strokee, personal observation, courage and research will give you the insight to know whether or not the care that is given is indeed best for your loved one. Trust yourself, and don't be embarrassed or afraid to fight for what you believe to be right.
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.