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    • Tammy’s Household

    Tammy and Rafael have been married for 15 years and live with their two children in the distant suburbs of Silicon Valley. Tammy was a school teacher and about to return from maternity leave after Sam’s birth when Wanda had a serious seizure. She stays home and cares for the two children. Rafael is currently unemployed.

    Wanda has severe epilepsy and cerebral palsy. Different medications have been used to keep the seizures under control but they have not worked. The family found that a ketogenic (high-fat) diet keeps seizures at a minimum (3-4 per day). Wanda cannot communicate, has nearly total paralysis in both arms and legs, and lost her ability to chew and swallow at age five.  She is fed through a gastronomy tube.

    Sam also requires a lot of care. He needs help with basic activities, including dressing himself and eating. Sam requires various vitamins and supplements (some delivered via syringe).

    The possibility of something happening to Wanda or Sam is a constant worry for Tammy and Rafael. They are also concerned about what things will be like as the two children become older.

    Tammy and Rafael have been married for 15 years and live with their two children in the distant suburbs of Silicon Valley. Tammy was a school teacher and about to return from maternity leave after Sam’s birth when Wanda had a serious seizure. She stays home and cares for the two children. Rafael is currently unemployed.

    Wanda has severe epilepsy and cerebral palsy. Different medications have been used to keep the seizures under control but they have not worked. The family found that a ketogenic (high-fat) diet keeps seizures at a minimum (3-4 per day). Wanda cannot communicate, has nearly total paralysis in both arms and legs, and lost her ability to chew and swallow at age five.  She is fed through a gastronomy tube.

    Sam also requires a lot of care. He needs help with basic activities, including dressing himself and eating. Sam requires various vitamins and supplements (some delivered via syringe).

    The possibility of something happening to Wanda or Sam is a constant worry for Tammy and Rafael. They are also concerned about what things will be like as the two children become older.

    Tammy
    Rafael
    • Care Network
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • 24-hour Log
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • 36-hour Log
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Activities
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Photo Log
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Body
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Environment
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Motion
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    • Summary
      Explore diagram

      Both children were in school part of the day when they participated in the Atlas study. Wanda, however, returned home early due to health issues, and later had to be rushed to the hospital. She came home later in the evening. The weekends are more intense for Tammy and Rafael since both children are home.

      During the study, Tammy and Rafael kept activity logs. Both already log in order to keep track of seizures, urine & bowel movements, medications, treatments, and other relevant information. Rafael shares equally in the caregiving needs while also searching for a job. Despite being accustomed to logging, given everything else going on it proved difficult for each to capture all the details.

    Atlas of Caregiving

    Through ethnography, data, and technology, Atlas of Caregiving explores and informs family caregiving – making it easier and more effective, now and for generations to come. Atlas of Caregiving is a California nonprofit public benefit corporation.

    Except where noted, this work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

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