Life After Stroke: Survivor and Caregiver

After a stroke, both the stroke survivor and the family often are apprehensive about being on their own at home. Among the common concerns are fear:

• that a stroke might happen again
• that the stroke survivor may be unable to accept the disabilities
• that the survivor might be placed in a nursing home
• that the caregiver may not be prepared to face the responsibility of caring for the stroke survivor
• that friends and family will abandon them

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Memory Loss
Some changes in behavior, such as memory loss, can be so subtle the family may not notice them at first. A stroke survivor may be anxious and cautious, needing a reminder to finish a sentence or know what to do next. Some stroke survivors have difficulty with numbers and calculating. Their family will need to learn to keep things in the same place, do things in the same sequence, tell the stroke survivor in advance what is going to happen and possibly take over some responsibilities. Read detailed information about Vascular Dementia, one form of memory loss after stroke. Review new research on possible treatments.

Behavior
The confused or cautious stroke survivor needs an ordered environment. The stroke survivor with poor judgment must be guided when making important decisions. The apathetic stroke survivor, on the other hand, should not live in a world so quiet and simple that there is little to react to. The caregiver needs to be aware of the reasons for the stroke survivor's behavior, without overlooking the fact that he or she may also be depressed.


Depression
Depression is nearly universal among people who have had a stroke. It can be overwhelming, affecting the spirit and confidence of everyone involved. A depressed person may refuse or neglect to take medications, may not be motivated to perform exercises which will improve mobility or may be irritable with others.
The stroke survivor's depression may dampen the family's enthusiasm for helping with recovery or drive away others who want to help. This deprives the stroke survivor of the social contacts which could help dispel depression, and creates a vicious cycle.

It is possible that as time goes by and a stroke survivor's deficits improve, the depression may lift by itself. Family can help by trying to stimulate interest in other people, encouraging leisure activities and providing opportunities to participate in spiritual activities. If necessary, chronic depression can be treated with individual counseling, group therapy or antidepressant drugs.


Emotional Lability
Sudden laughing or crying for no apparent reason and difficulty controlling emotional responses, known as emotional lability, affects many stroke survivors. There may be no happiness or sadness involved, and the emotional display will end as quickly as it started.


Neglect
Some stroke survivors neglect the side of their world corresponding to the side of their brain which was injured by the stroke. Those with left-sided neglect do not perceive what is on their left side. For example, the stroke survivor with left-sided neglect may ignore the left side of the face when washing or not eat food on the left side of the plate. If the stroke survivor's head is moved to the left, neglected objects may become apparent. If the plate is turned around, he or she will finish eating the meal.

Communication Problems
If a stroke causes damage to the language center in the brain, there will be language difficulties. Some stroke survivors are unable to understand or speak at all. Others do not make sense when they speak. Some can no longer read or write. Many have difficulty pronouncing words. Communication problems are among the most frightening after-effects of stroke for both the survivor and the family, often requiring professional help.


Daily Task Difficulties
Stroke survivors will find that completing simple tasks around the house which they took for granted before the stroke are now extremely difficult or impossible. Many adaptive devices and techniques have been designed especially for stroke survivors to help them retain their independence and function safely and easily. The home usually can be modified so that narrow doorways, stairs and bathtubs do not interfere with the stroke survivor's ability to care for personal needs.

Links to Helpful Products and Services for Stroke Survivors

Helpful bathroom devices include grab bars, a raised toilet seat, a tub bench, a hand-held shower head, no-slip pads, a long-handled brush, a washing mitt with pockets for soap, soap-on-a-rope, an electric toothbrush and an electric razor.

There are many small electric appliances and kitchen modifications which also make it possible for the stroke survivor to participate in meal preparation.

Dressing and Grooming

Dressing oneself is a basic form of independence. The added value of being neatly and attractively dressed enhances a stroke survivor's self-image. There are many ways to eliminate the difficulties in getting dressed. Stroke survivors should avoid tight-fitting sleeves, armholes, pant legs and waistlines; as well as clothes which must be put on over the head. Clothes should fasten in front. Velcro fasteners should replace buttons, zippers and shoe laces. Devices which can aid in dressing and grooming include a mirror which hangs around the neck, a long-handled shoe horn and a device to help pull on stockings.


Diet, Nutrition and Eating

A low-salt, low-fat, low-cholesterol diet can help prevent a recurrent stroke. People with high blood pressure should limit the amount of salt they eat. Those with high cholesterol or hardening of the arteries should avoid foods containing high levels of saturated fats (i.e., animal fats). People with diabetes need to follow their doctor's advice on diet. These diet controls can enhance the benefits of the drugs which may have been prescribed for control of a specific condition.

Weight control is also important. Inactive people can easily become overweight from eating more than a sedentary lifestyle requires. Obesity can also make it difficult for someone with a stroke-related disability to move around and exercise.

Some stroke survivors may have a reduced appetite. Ill-fitting dentures or a reduced sense of taste or smell can make food unappealing. The stroke survivor who lives alone might even skip meals because of the effort involved in buying groceries and preparing food. Soft foods and foods with stronger flavors may tempt stroke survivors who are not eating enough. Nutrition programs, such as Meals on Wheels, or hot lunches offered through community centers have been established to serve the elderly and the chronically ill.

Special utensils can help people with physically-impaired arms and hands at the table. These include flatware with built-up handles which are easier to grasp, rocker knives for cutting food with one hand and attachable rings which keep food from being pushed off the plate accidentally.

Stroke survivors who have trouble swallowing need to be observed while eating so that they do not choke on their food. The same is true of those with memory loss who may forget to chew or to swallow. Tougher foods should be cut into small pieces.

Skin Care

Decubitus ulcers (sometimes called bed sores) can be a serious problem for stroke survivors who spend a good deal of time in bed or who use a wheelchair. The sores usually appear on the elbows, buttocks or heels.

To prevent bed sores, caregivers should make sure the stroke survivor does not sit or lie in the same position for long periods of time. Pillows should be used to support the impaired arm or leg. The feet can hang over the end of the mattress so that the heels don't rest on the sheet, or pillows can be put under the knees to prop them so that the soles of the feet rest flat on the bed. Sometimes, a piece of sheepskin placed under the elbows, buttocks or heels can be helpful. Special mattresses or cushions reduce pressure and help prevent decubitus ulcers.


Pain

A stroke survivor may suffer pain for many reasons. The weight of a paralyzed arm can cause pain in the shoulder. Improperly-fitted braces, slings or special shoes can cause discomfort. Often the source of pain can be traced to nerve damage, bed sores or an immobilized joint. Lying or sitting in one position too long causes the body and joints to stiffen and ache.


Sexuality

The quality of a couple's sexual relationship following a stroke differs from couple to couple. Most couples do find that their sexual relationship has changed, but not all find this to be a problem. The closeness that a couple shares before a stroke is the best indicator of how their relationship will evolve after the stroke. It is important to remember that sexual satisfaction, both giving and receiving, can be accomplished in many ways. Whatever is comfortable and acceptable between partners is normal sexual activity.

Links to Helpful Products and Services for Stroke Survivors