Life for the Jack Meadows family changed forever in December 1989 when this husband and father suffered a stroke. The massive incident in his brain left him with no use of his right side. Months of rehabilitation restored strength and balance but could not return him independence in daily routines of self-care. He has a strong left arm and weak left leg to provide limited mobility. In addition, frustrating his life even greater is the lack of communication. He definitely has cognitive processes as is evident when following conversations and watching television quiz shows. But, thoughts have difficulty connecting to words and words in the brain do not translate to speech.

His family has chosen over the past twelve years to assist him at home. While visiting nurses and aides have contributed valuable services over the years, the major day-to day attention to his needs has been and continues to be given by his wife. A son, daughter and a few good friends frequently assist. We have learned tremendous lessons about the skills our stroke patient has retained or developed. We have also acquired extensive knowledge and mastered many competencies in our twenty-four hour a day, seven days a week responsibility. As others make decisions about the care of their family member who has incurred a physical or communication limitation, they could benefit from our experience. When arranging care for a family member guardians may inquire and observe to ascertain if the kind of care we are giving in the home will be given in the long-term care facility or hospital.

Over the years Mr. Meadows has required services in several hospitals and many doctors’ offices. Most doctors and nurses do not know readily how to meet his needs. We can only surmise that they learned about stroke patients and other handicapped individuals in their schooling and on-the-job training but have not had the amount of direct experience as when a family provides care at home. Our intention is to share the wisdom we have attained and to contribute to the quality of care accorded to all persons with physical restrictions.             

COMMUNICATION

First, be sure you have the full attention of your patient. While eye contact is important the individual who has had a stroke may look you square in the eyes but not have focus on the conversation. Position yourself in front of your patient and tune out all other sights and sounds in the room. Turn down the volume of the television, radio and block the talk of any other people in the area. Make contact by touching the hand, chin or cheek, an area not affected by the stroke. Sometimes our family member is helped by directing him to look at the speaker. Saying, “look at my face,” does not offend him and gains his concentration. Use a normal volume and speak clearly.

Express one idea at a time in simple terms and repeat if needed to assure yourself that the two of you understood each other. For example, “do you want coffee?” and then follow up with “coffee?” More complex thoughts can also be conveyed in this manner. Ask, “were you on Omaha Beach?”… “Omaha Beach?”… “you were there during World War II?”

Hand gestures can assist with clarification. Both the care giver and the stroke patient can benefit. Ask your client to point to what he wants or needs. He will develop a repertoire of pointing for such daily items as the television remote, newspaper, eyeglasses, radio, drapes, an uncomfortable foot or arm or headache. When going through complicated maneuvers such as using the mechanical lift to get in and out of bed the patient can work in coordination with the attendant. Instruct him to place his hand on the release lever of the lift and push in. Point to the lever or guide his hand to the lever. Demonstrate a pushing motion at the same time as saying, “push.”

At times when communication is not working, give it a rest. Take time out and try again later. Sometimes the family or friend has exhausted the twenty questions and both parties are becoming frustrated. Tell the patient, “we will think about it,” or “we can try again later.”

DAILY CARE AND ACTIVITIES

Have the person who had a stroke do as much routine self care as possible. This may seem very little with one good arm but we have discovered many surprising tasks that our husband and father can do well. Every task he found he could do for himself raised his pride and confidence. He can operate a television remote, secure a towel around his neck before eating, use a spoon to eat most anything, pick up food morsels he has dropped, use a cordless razor to shave and put a cassette in a tape player. His more complicated skills include leafing through a magazine or newspaper, folding towels from the laundry and using the overhead bar to slide himself up in bed.

Vary the day but follow a routine. This piece of advice may seem contradictory but really is no different for the person who lives with a stroke than the family around him. To make the most of the day a schedule provides security and comfort for both the stroke client and the caregiver. For instance, a schedule of getting dressed in the morning, eating breakfast, moving into a comfortable chair and watching favorite television programs gives the patient peace of mind. He also can feel he has some control over his day as he watches the clock knowing certain activities will occur at specific times. Additionally, within the day activities could be varied so that the person who can not move himself does stay in one place, one position for such a length of time that the body and mind become numb. Thus, the assistant must move the client from the bed to the wheel chair to the easy chair and so forth several times in the course of the ordinary day. Staying in one place for hours at a time is neither comfortable physically or mentally. The routine for our stroke patient includes sitting in a recliner in the morning to watch television, moving to the wheel chair and into the kitchen for lunch, return to the bed after lunch for a nap or listening to music. In the afternoon he moves to the recliner again and enjoys watching children coming from school or birds dining at the feeder. Again he moves to the wheelchair and the kitchen for his supper. In the evening he may sit in the recliner again or sit in bed to watch television, read the newspaper or listen to the radio.  

A mechanical ‘lift’ (such as one manufactured by Hoyer) is a necessity. With practice it is easy to use and makes possible the mobility of a person weighing over two hundred pounds by the helper who is five feet tall. A lift could be available in every wing of a nursing home, rehabilitation center, doctor’s office and hospital department. The lift seldom breaks down and takes wear and tear over the years. Every care giver should learn to use this invaluable tool.

Use the stroke patient’s good side. Place a tray or table where the mobile hand can easily reach. Items the patient wants at his access include tissues, cup, spoon, pills and cough drops. The television remote or the nurse call button must be on the side where the patient can handle them.            

Be prepared for normal body functions at all times. If the stroke patient uses a bedpan or underpads, a supply could be kept at the bedside. The patient can’t wait until a nurse or aide walks down the hall and back with the needed items. The same is true for saliva and nasal mucus. Tissues kept at the patient’s hand usually prevent a mess and embarrassment.

INDIVIDUAL NEEDS AND WANTS

Find those special traits that each person maintained in spite of the stroke or developed afterward. For example, our patient can read a clock and point out directions when riding in the car. We also discovered that he can sing and his words are correct for the song and intelligible. At times he will try to sing a word that when spoken is not making sense to his listeners.

The member of the family who has had a stroke can be involved in everyday decisions. This is accomplished by offering choices. The easy tasks such as what to have for dinner can be accommodated by asking, “what do you want, chicken or fish?” More difficult choices can also work in this manner. “What should we give our granddaughter for a wedding gift, money or a clock?”

Be patient and willing to try innovative approaches. One great frustration is learning to eat with one hand, the opposite of the dominant hand. Our patient required many trials before being able to get more food in his mouth than on the tablecloth but eventually his persistence won. In the process we found that a flat dinner plate did not work well. When a pie plate with sides was substituted he could scoop food into a spoon instead of pushing it over the edge. He occasionally requires assistance with cutting food and picking up the last morsels. The person who sits to his right can assist by using his or her fork to push the food onto the spoon. This method allows him to master cleaning up well liked but difficult foods such as peas.

Special ‘treats’ rouse the spirits of everybody involved with the stroke patient. We can’t take for granted the common events such as going for a ride in the car or giving a biscuit to the dog. The stroke patient who has difficulty getting around thrives on getting a change of scenery or visiting places he used to frequent. For our patient going past the plant where he worked for thirty-five years boosts his mood for days at a time. Other special treats include visits from friends and cards from school children.       

Include the stroke patient in as many events as possible. Although he may not communicate easily, including him in conversations is good for his positive mental outlook. Moving him around is a difficult task for the family but one which must be undertaken to maintain his emotional well-being. For our patient the trip to his granddaughter’s wedding and reception was a huge undertaking but one worth the effort when the joy was shared by all. Other times to include him are more easily accomplished. For example, we arrange gifts for him to give at Christmas and birthdays. He participates in the selection and wrapping.   

Living with the stroke patient at home is not for every family. One member of the family needs to become the driving force behind the effort. In the Meadows family that person is the patient’s wife. Medications must be closely monitored. Services of doctors, nurses, aides and therapists must be scheduled. Doctors, hospital and pharmacy bills and Medicare and insurance payments are accurately watched and recorded. 

Overall, our family experience has been rewarding. The little triumphs from day to day far outweigh the effort and frustrations. Taking time, being composed and possessing boundless energy are necessary but not easy. Employing innovative thinking and maintaining focus on the solution to daily obstacles to the patient’s comfort and happiness is a challenge to family, friends and caregivers.

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