Hired Caregivers

Family members who received adequate help when it was needed had experienced significantly less burden of care than those without help. Some family caregivers reported no burden of care, despite having loved ones with severe disability, if they had the finances and benefits to receive hired help at home everyday. They either had built-in family support or were forced to hire caregivers. Life satisfaction of family caregivers also depended on whether their loved ones were satisfied. Patients who had acquired the ability to cope with the physical and emotional aspects of the disease often had peace of mind. That enhanced the family caregivers ability to cope and still enjoy life. Despite severe disability, many families continued to respond positively to the patient. 

Immobile patients using TPPV could never be left alone, unlike MV users with mobility. If a patient could execute self-care of a tracheostomy, they were occasionally left home alone. 

On the basis of close observation, most family caregivers provided meticulous care, usually as good as hired nurses (2). Initially, family caregivers were trained on tracheostomy care and were supervised by a registered nurse. Most school-age children and teens assisted with care. Older children usually provided tracheostomy care (2,9), while younger children were often educated on intervening in the event of an emergency. 

The number of patient families with hired caregivers varied widely, and was dependent on their health care benefits and/or their incomes. Surprisingly, many families were unaware of their specific health care benefits, both before and after commencement of LTMV. In the United States, patients with poverty status actually obtained the most health care benefits. 

This usually included coverage for care by the government for either a part-time hired caregiver at home or full-time admission to a care facility. 

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Overall, family caregivers of MV users perceived that the progression of immobility was the predictor of death, despite the use of MV. Also, hired caregivers, particularly nurses from hospices and home care agencies, have generally perceived this misconception. Often, families did not comprehend that respiratory failure is the primary cause of mortality of ALS and that MV can prevent respiratory failure and death. 

Of all the categories of family caregivers, parents had the most difficulty in adapting to the catastrophic diagnosis and threat to their child s life, regardless of the age of the child. Some parents tended to overprotect their child and hover over hired caregivers to assure that every procedure of care was performed with perfection. In addition, some tended not to support the wishes of their child to withdraw or refuse LTMV. Occasionally, I heard, I plan to keep my baby alive. Parents, who were elderly, sometimes could not physically... 

Pre rams should consider hiring paraprofessionals, including parent associates and family-to-family support advocates, to help facilitate connections between caregivers and service providers. 

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