What is a Stroke?
Stroke is one of the most feared consequences of the aging process. In the United States alone, roughly 730,000 people suffer from strokes each year. Of those, approximately 150,000 die at the time of their stroke or during the subsequent hospitalization, making stroke the third leading cause of death behind heart disease and cancer. Three-quarters of those who suffer from strokes do survive, however. For many older men and women, the fear of suffering with permanent disability after a stroke is as profound as the fear of stroke itself.
A stroke occurs when a part of the brain is deprived of blood, a result of either a ruptured blood vessel or, more commonly, a blockage in a vessel caused by a blood clot. Cut off from its blood supply, that part of the brain is damaged or dies. Strokes can be large or small, and any part of the brain may be affected. When a portion of the brain is damaged as the consequence of a stroke, the mental or physical functions controlled by that particular area may be lost.
This article will discuss life after a debilitating stroke. It is important to note that a stroke may be treated or even reversed if a person receives emergent medical care after the onset of stroke symptoms. For more on the signs and symptoms of stroke, as well as the available treatments, see the articles in Healthology's focus area entitled 'Stroke'.
Physical Consequences
The effects of stroke vary considerably, depending on the particular part of the brain affected, and the size of the area involved. A stroke can leave a person with one or more of the following problems:
- Paralysis in one limb or on one side of the body or face
- Loss of sensation
- Loss of balance
- Loss of bladder control
- Decreased level of consciousness or alertness
- Complete or partial blindness
- Swallowing difficulties
- Speech difficulties or inability to speak
- Thought and memory difficulties
Health
Recovery
There is wide variability in stroke recovery, depending on age, other medical problems, and the type and severity of the stroke itself. The damage done to the brain during a stroke causes the brain to swell. In the two to three weeks following a stroke, this swelling gradually decreases. As the swelling decreases, some or all of a person's lost function can return. The time frame for recovery can be much longer, however, with gradual improvement over a period of up to a year. Doctors use a simplified rule-of-thumb to give patients and families an idea of what they can hope for in terms of recovery. If recovery is possible, 50% of the recovery can be expected in the first month, 75% in the first 3 months, and 100% at 12 months after the stroke. If function has not returned after a year, it is unlikely to come back.
Today there are an estimated 3 million survivors of stroke living in the United States. Nearly 5% of all persons over the age of 65 have had at least one stroke at some time in their lives. Up to 40% of stroke victims who survive their initial stroke fully recover. The remainder will need to learn to live and cope with varying degrees of disability. For some, the arrival of disability marks a turning point in their lives, from a life of independence to one of dependence. Many will need to rely on others for help with day-to-day living. While a variety of assisted-living arrangements are available for older persons, stroke is one of the most common reasons why a parent will move in with their grown children.
Improving Function after a Stroke
There are ways to increase the chances of returned function after a stroke. Stroke rehabilitation has been around for a long time, but only recently has it been proven that patients who undergo rehabilitation have better outcomes than patients who don't. Stroke victims who start rehabilitation in the days immediately after their stroke are less likely to die in the months that follow. In those cases where disability is moderate or severe, patients who receive rehabilitation recover more function, and have less overall disability, than those who don't. The goal of rehabilitation, then, is to help the stroke victim achieve as much recovery of lost function as possible.
Physical Therapy
A person who has had a stroke should begin rehabilitation as soon as possible. Early physical therapy is critical in preventing a complication known as muscular contractures. Contractures occur in paralyzed or partially paralyzed limbs and are the result of disuse. Muscles and tendons, when not used, tend to stiffen and shorten and are gradually replaced by fibrous tissue. The stiff and shortened muscles gradually, but permanently, pull arms and legs into a bent or contorted position, and can make simple activities like dressing, sitting, or lying in bed difficult. Physical therapy involves gentle stretching and passive movement of paralyzed body parts, and can keep arms and legs flexible and free of contractures.
Physical therapy also focuses on improving balance and increasing strength in both those muscles affected and unaffected by the stroke. Balance and strength are critical in the recovery of mobility necessary for independent living. Depending on the location and extent of functional losses caused by stroke, patients may need extensive training and strengthening in order to be able to sit or stand. Over time, many people with even severe disabilities can be trained to walk with a walker, with a cane, or independently. Splints and braces are sometimes used to support and strengthen weak legs or ankles.
Additional Therapies
Occupational therapists use recreational and day-to-day activities, like dressing, bathing, and eating, to train patients for maximum independence. Speech therapists work with stroke survivors who have difficulty with speaking or swallowing. Therapists use a variety of techniques to help improve and train mental functioning and memory.
The Team Approach
In most large hospitals and rehabilitation centers specializing in stroke patient care, stroke rehabilitation is undertaken using a team approach. Doctors, nurses, therapists, family members and patients all work together whenever possible to set reasonable goals and expectations. This multi-disciplinary approach is designed to provide coordinated and comprehensive re-training for stroke survivors, with emphasis on providing motivation and emotional support critical for achieving maximum recovery.
Medical Care
Stroke survivors should be followed closely by a general medical doctor or neurologist familiar with the care of stroke patients. As a general internist, I care for a number of patients who have survived strokes, helping them and their families understand and cope with the consequences. Many have gone on to recover all their lost function, while others struggle with significant disability. In the short term, I can ensure that they get the appropriate type and amount of post-stroke rehabilitation; in the long term, I am responsible for ensuring that day-to-day care and supervision is adequate for their needs. This often involves arranging for home nursing care and teaching family members how to watch for signs of illness and deterioration.
Preventing Another Stroke
Helping to prevent a second stroke is a critical goal for the doctor of a stroke survivor. Whether the patient has recovered fully or has serious impairment, identifying the cause of a first stroke is an all-important first step in preventing a second. Once the cause of the first stroke has been identified, medical therapy can be tailored toward preventing another. Aspirin or other blood thinning medications may be appropriate to reduce the risk of future blood clots. Control of high blood pressure, usually with one or more medications, is critical. Lowering cholesterol, either through diet or with medications, and quitting smoking are likely to be extremely beneficial.
Preventing other Medical Complications
Survivors of stroke who are left with serious disability can be at risk of other medical problems as well. Bladder problems can make them prone to serious urinary infections. Pneumonia is common, particularly in those with strokes that have caused problems with speaking and swallowing. For people with paralysis who have difficulty moving around independently, bed-sores and pressure ulcers can be a devastating complication. Nurses and home care workers are trained to watch for subtle signs of these potential problems, and are trained in techniques to prevent them. Family members can be trained as well. For example, careful attention to positioning in a bed or in a chair, with appropriate cushioning for pressure points like the heels, hips, and the base of the spine, combined with frequent changes in position, can help prevent bed-sores and pressure ulcers.
Caring for Someone After a Disabling Stroke
Many stroke survivors with severe disabilities need high levels of care and attention. Those who are unable to walk without assistance, either because of paralysis or difficulties with balance, will need help getting in and out of bed or getting to and from a chair or toilet. They may need assistance with bathing, dressing, and preparing meals. Persons with confusion and memory problems, or with poor vision as a result of their stroke, may need assistance with things like taking medications or paying their bills. Some may need constant supervision for reasons of safety.
Understanding Your Responsibilities
Before taking on the responsibility of caring for a loved one after a stroke, it is critical to determine whether you will be able to meet their special care needs. You may need to make changes in your home to make it safe and livable for them. If your family member is being discharged from a hospital after a stroke, their doctors, nurses, and therapists can help articulate those needs. The hospital social worker can help arrange for home care services and put you in touch with caregiver support groups.
Recognizing Your Limits
Some stroke survivors need levels of care that surpass what can be provided in the home without outside help, even in the most loving and giving families. As a caregiver, recognizing the limits of the care that you can provide is critical in order to ensure a safe environment for a family member who has suffered a stroke. In-home nursing care is often an option for some families, and for some stroke survivors who live alone but need limited help or supervision. It is not uncommon for adult children of stroke survivors to feel as if they are abandoning their parent when they consider nursing home care. Nothing could be further from the truth; in some circumstances, high-quality nursing home care is the only appropriate level of care for a person who has suffered a severe and disabling stroke.
How Common is Depression After a Debilitating Stroke?
As might be expected, one of the most common complications that affect survivors of disabling stroke is depression. Stroke survivors are often frustrated and saddened by the loss of independence that comes as a result of paralysis or loss of mobility. Many find having to rely on family, friends, or other caregivers for personal activities like bathing or toileting to be embarrassing or demeaning. Others bear guilt for being a "burden" to their loved ones. Mental disabilities, including confusion and memory problems, add to the emotional burden. Problems with speech can make communication difficult; as a result, depression in many stroke sufferers, even those with severe depression, goes undiagnosed.
Recognizing the Signs of Depression
Even the most independent, functional, and well cared-for stroke survivors are at higher risk for depression. As a caregiver, be tuned in to possible signs of depression, which can go beyond simple sadness or melancholy. In older persons who do not seem particularly sad, lack of interest in previously enjoyable activities, disruption of normal sleep patterns or sleeping excessively, and loss of appetite can be subtle signs of depression.
Caregivers, too, are prone to emotional distress and depression as a consequence of having to take on the responsibility of caring for a dependent stroke survivor. All of the elements that make life difficult for the stroke sufferer can weigh heavily on family and friends. The emotional burden of watching a loved one lose their independence can be difficult. For many, the idea of having to trust an outsider to provide care for a loved one, whether at home or in a nursing home, can be emotionally difficult as well. The physical demands involved in caring for a person after stroke often involving frequent turning, lifting, and supporting, and this can be exhausting.
Treating Depression
Once identified, depression after stroke is readily treatable. Anti-depressant medications and psychotherapy can be very effective. Many of the external factors that contribute to depression can be improved as well; additional help in the home, for example, can help remove some of the responsibility from family members and help reduce feelings of guilt and dependence.
Support Groups
Support groups exist in most communities for men and women who have survived strokes, as well as for their families and friends. Most are coordinated through hospitals, rehabilitation facilities, or local community centers. Support groups can be instrumental in helping survivors and their families understand and cope with the issues they face after a stroke. Your doctor or hospital should be able to direct you to meetings in your area. The Internet is also an excellent source for finding local and on-line support.
Life after stroke can be challenging for survivors and their families. Stroke can redefine relationships and create issues of dependence and independence. As a caregiver, work closely with your family member's doctor and their entire health care team to develop a plan for optimizing your loved one's health and independence. If you are willing to accept the help that is available, you may find that caring for someone after a stroke is a rewarding expression of your love.
