What the Patient Can Do
If you are a stroke survivor in rehabilitation, keep in mind that you are the most important person in your treatment. You should have a major say in decisions about your care. This is hard for many stroke patients. You may sometimes feel tempted to sit back and let the program staff take charge. If you need extra time to think or have trouble talking, you may find that others are going ahead and making decisions without waiting. Try not to let this happen.
- Make sure others understand that you want to help make decisions about your care.
- Bring your questions and concerns to program staff.
- State your wishes and opinions on matters that affect you.
- Speak up if you feel that anyone is “talking down” to you; or, if people start talking about you as if you are not there.
- Remember that you have the right to see your medical records.
To be a partner in your care, you need to be well informed about your treatment and how well you are doing. It may help to record important information about your treatment and progress and write down any questions you have.
If you have speech problems, making your wishes known is hard. The speech-language pathologist can help you to communicate with other staff members, and family members may also help to communicate your ideas and needs.
Most patients find that rehabilitation is hard work. They need to maintain abilities at the same time they are working to regain abilities. It is normal to feel tired and discouraged at times because things that used to be easy before the stroke are now difficult. The important thing is to notice the progress you make and take pride in each achievement.
How the Family Can Help
If you are a family member of a stroke survivor, here are some things you can do:
- Support the patient’s efforts to participate in rehabilitation decisions.
- Visit and talk with the patient. You can relax together while playing cards, watching television, listening to the radio, or playing a board game.
- If the patient has trouble communicating (aphasia), ask the speech-language pathologist how you can help.
- Participate in education offered for stroke survivors and their families. Learn as much as you can and how you can help.
- Ask to attend some of the rehabilitation sessions. This is a good way to learn how rehabilitation works and how to help.
- Encourage and help the patient to practice skills learned in rehabilitation.
- Make sure that the program staff suggests activities that fit the patient’s needs and interests.
- Find out what the patient can do alone, what the patient can do with help, and what the patient can’t do. Then avoid doing things for the patient that the patient is able to do. Each time the patient does them, his or her ability and confidence will grow.
- Take care of yourself by eating well, getting enough rest, and taking time to do things that you enjoy.
To gain more control over the rehabilitation process, keep important information where you can find it. One suggestion is to keep a notebook with the patient.Tags: Stroke, Rehabilitation robotics, speech-language pathologist, Rehabilitation medicine, Amyotrophic lateral sclerosis, Stroke recovery
In hospital or nursing facility rehabilitation programs, the patient may spend several hours a day in activities such as physical therapy, occupational therapy, speech therapy, recreational therapy, group activities, and patient and family education.
It is important to maintain skills that help recovery. Part of the time is spent relearning skills (such as walking and speaking) that the person had before the stroke. Part of it is spent learning new ways to do things that can no longer be done the old way (for example, using one hand for tasks that usually need both hands).
Setting Rehabilitation Goals
The goals of rehabilitation depend on the effects of the stroke, what the patient was able to do before the stroke, and the patient’s wishes. Working together, goals are set by the patient, family, and rehabilitation program staff. Sometimes, a person may need to repeat steps in striving to reach goals.
If goals are too high, the patient will not be able to reach them. If they are too low, the patient may not get all the services that would help. If they do not match the patient’s interests, the patient may not want to work at them. Therefore, it is important for goals to be realistic. To help achieve realistic goals, the patient and family should tell program staff about things that the patient wants to be able to do.
- Rehabilitation Goals
- Being able to walk, at least with a walker or cane, is a realistic goal for most stroke survivors.
- Being able to take care of oneself with some special equipment is a realistic goal for most.
- Being able to drive a car is a realistic goal for some. Having a job can be a realistic goal for some people who were working before the stroke. For some, the old job may not be possible but another job or a volunteer activity may be.
Reaching treatment goals does not mean the end of recovery. It just means that the stroke survivor and family are ready to continue recovery on their own.
- Rehabilitation Specialists
Because every stroke is different, treatment will be different for each person. Rehabilitation is provided by several types of specially trained professionals. A person may work with any or all of these:
All patients in stroke rehabilitation have a physician in charge of their care. Several kinds of doctors with rehabilitation experience may have this role. These include family physicians and internists (primary care doctors), geriatricians (specialists in working with older patients), neurologists (specialists in the brain and nervous system), and physiatrists (specialists in physical medicine and rehabilitation).
- Rehabilitation nurse
Rehabilitation nurses specialize in nursing care for people with disabilities. They provide direct care, educate patients and families, and help the doctor to coordinate care.
- Physical therapist
Physical therapists evaluate and treat problems with moving, balance, and coordination. They provide training and exercises to improve walking, getting in and out of a bed or chair, and moving around without losing balance. They teach family members how to help with exercises for the patient and how to help the patient move or walk, if needed.
- Occupational therapist
Occupational therapists provide exercises and practice to help patients do things they could do before the stroke such as eating, bathing, dressing, writing, or cooking. The old way of doing an activity sometimes is no longer possible, so the therapist teaches a new technique.
- Speech-language pathologist
Speech-language pathologists help patients get back language skills and learn other ways to communicate. Teaching families how to improve communication is very important. Speech-language pathologists also work with patients who have swallowing problems (dysphagia).
- Social worker
Social workers help patients and families make decisions about rehabilitation and plan the return to the home or a new living place. They help the family answer questions about insurance and other financial issues and can arrange for a variety of support services. They may also provide or arrange for patient and family counseling to help cope with any emotional problems.
Psychologists are concerned with the mental and emotional health of patients. They use interviews and tests to identify and understand problems. They may also treat thinking or memory problems or may provide advice to other professionals about patients with these problems.
- Therapeutic recreation specialist
These therapists help patients return to activities that they enjoyed before the stroke such as playing cards, gardening, bowling, or community activities. Recreational therapy helps the rehabilitation process and encourages the patient to practice skills.
- Other professionals
Other professionals may also help with the patient’s treatment. An orthotist may make special braces to support weak ankles and feet. A urologist may help with bladder problems. Other physician specialists may help with medical or emotional problems. Dietitians make sure that the patient has a healthy diet during rehabilitation. They also educate the family about proper diet after the patient leaves the program. Vocational counselors may help patients go back to work or school.
Rehabilitation professionals, the patient, and the family are vitally important partners in rehabilitation. They must all work together for rehabilitation to succeed.
In many programs, a special rehabilitation team with a team leader is organized for each patient. The patient, family, and rehabilitation professionals are all members. The team has regular meetings to discuss the progress of treatment. Using a team approach often helps everyone work together to meet goals.
The doctor and other hospital staff will provide information and advice about rehabilitation programs, but the patient and family make the final choice. Hospital staff know the patient’s disabilities and medical condition.
They should also be familiar with the rehabilitation programs in the community and should be able to answer questions about them. The patient and family may have a preference about whether the patient lives at home or at a rehabilitation facility. They may have reasons for preferring one program over another. Their concerns are important and should be discussed with hospital staff.
Things To Consider When Choosing a Rehabilitation Program
- Does the program provide the services the patient needs?
- Does it match the patient’s abilities or is it too demanding or not demanding enough?
- What kind of standing does it have in the community for the quality of the program?
- Is it certified and does its staff have good credentials?
- Is it located where family members can easily visit?
- Does it actively involve the patient and family members in rehabilitation decisions?
- Does it encourage family members to participate in some rehabilitation sessions and practice with the patient?
- How well are its costs covered by insurance or Medicare?
- If it is an outpatient or home program, is there someone living at home who can provide care?
- If it is an outpatient program, is transportation available?
A person may start rehabilitation in one program and later transfer to another. For example, some patients who get tired quickly may start out in a less intense rehabilitation program. After they build up their strength, they are able to transfer to a more intense program.
When Rehabilitation Is Not Recommended
Some families and patients may be disappointed if the doctor does not recommend rehabilitation. However, a person may be unconscious or too disabled to benefit. For example, a person who is unable to learn may be better helped by maintenance care at home or in a nursing facility. A person who is, at first, too weak for rehabilitation may benefit from a gradual recovery period at home or in a nursing facility. This person can consider rehabilitation at a later time. It is important to remember that:
Hospital staff are responsible for helping plan the best way to care for the patient after discharge from acute care. They can also provide or arrange for needed social services and family education.
This is not the only chance to participate in rehabilitation. People who are too disabled at first may recover enough to enter rehabilitation later.Tags: Rehabilitation medicine, Nursing, Nursing home, Stroke recovery, Healthcare in the United States, Geriatric rehabilitation, Geriatrics
The main purposes of acute care are to:
- Make sure the patient’s condition is caused by a stroke and not by some other medical problem.
- Determine the type and location of the stroke and how serious it is.
- Prevent or treat complications such as bowel or bladder problems or pressure ulcers (bed sores).
- Prevent another stroke.
Encourage the patient to move and perform self-care tasks, such as eating and getting out of bed, as early as medically possible. This is the first step in rehabilitation.
Stroke survivors and family members may find the hospital experience confusing. Hospital staff are there to help, and it is important to ask questions and talk about concerns.
Before acute care ends, the patient and family with the hospital staff decide what the next step will be. For many patients, the next step will be to continue rehabilitation.Tags: Stroke, Patient safety, Healthcare, Medicine, Patient safety and nursing, Stroke recovery
Each stroke is different depending on the part of the brain injured, how bad the injury is, and the person’s general health. Some of the effects of stroke are:
- Weakness (hemiparesis–hem-ee-par-EE-sis) or paralysis (hemiplegia–hem-ee-PLEE-ja) on one side of the body. This may affect the whole side or just the arm or the leg. The weakness or paralysis is on the side of the body opposite the side of the brain injured by the stroke. For example, if the stroke injured the left side of the brain, the weakness or paralysis will be on the right side of the body.
- Problems with balance or coordination. These can make it hard for the person to sit, stand, or walk, even if muscles are strong enough.
- Problems using language (aphasia and dysarthria). A person with aphasia (a-FAY-zha) may have trouble understanding speech or writing. Or, the person may understand but may not be able to think of the words to speak or write. A person with dysarthria (dis-AR-three-a) knows the right words but has trouble saying them clearly.
- Being unaware of or ignoring things on one side of the body (bodily neglect or inattention).
Often, the person will not turn to look toward the weaker side or even eat food from the half of the plate on that side.
- Pain, numbness, or odd sensations. These can make it hard for the person to relax and feel comfortable.
- Problems with memory, thinking, attention, or learning (cognitive problems). A person may have trouble with many mental activities or just a few. For example, the person may have trouble following directions, may get confused if something in a room is moved, or may not be able to keep track of the date or time.
- Being unaware of the effects of the stroke. The person may show poor judgment by trying to do things that are unsafe as a result of the stroke.
- Trouble swallowing (dysphagia–dis-FAY-ja). This can make it hard for the person to get enough food. Also, care must sometimes be taken to prevent the person from breathing in food (aspiration–as-per-AY-shun) while trying to swallow it.
- Problems with bowel or bladder control. These problems can be helped with the use of portable urinals, bedpans, and other toileting devices.
- Getting tired very quickly. Becoming tired very quickly may limit the person’s participation and performance in a rehabilitation program.
- Sudden bursts of emotion, such as laughing, crying, or anger. These emotions may indicate that the person needs help, understanding, and support in adjusting to the effects of the stroke.
- Depression This is common in people who have had strokes. It can begin soon after the stroke or many weeks later, and family members often notice it first.
Depression After Stroke
It is normal for a stroke survivor to feel sad over the problems caused by stroke. However, some people experience a major depressive disorder, which should be diagnosed and treated as soon as possible. A person with a major depressive disorder has a number of symptoms nearly every day, all day, for at least 2 weeks. These always include at least one of the following:
- Feeling sad, blue, or down in the dumps
- Loss of interest in things that the person used to enjoy
A person may also have other physical or psychological symptoms, including:
- Feeling slowed down or restless and unable to sit still
- Feeling worthless or guilty
- Increase or decrease in appetite or weight
- Problems concentrating, thinking, remembering, or making decisions
- Trouble sleeping or sleeping too much
- Loss of energy or feeling tired all of the time
- Other aches and pains
- Digestive problems
- Sexual problems
- Feeling pessimistic or hopeless
- Being anxious or worried
- Thoughts of death or suicide
If a stroke survivor has symptoms of depression, especially thoughts of death or suicide, professional help is needed right away. Once the depression is properly treated, these thoughts will go away. Depression can be treated with medication, psychotherapy, or both. If it is not treated, it can cause needless suffering and also makes it harder to recover from the stroke.
Disabilities After Stroke
A “disability” is difficulty doing something that is a normal part of daily life. People who have had a stroke may have trouble with many activities that were easy before, such as walking, talking, and taking care of “activities of daily living” (ADLs). These include basic tasks such as bathing, dressing, eating, and using the toilet, as well as more complex tasks called “instrumental activities of daily living” (IADLs), such as housekeeping, using the telephone, driving, and writing checks.
Some disabilities are obvious right after the stroke. Others may not be noticed until the person is back home and is trying to do something for the first time since the stroke.Tags: Abnormal psychology, Bipolar spectrum, Stroke recovery, Major depressive disorder, Post stroke depression, Mood disorders, Stroke