Coping with the death of an infant

A discussion of caring for a severely deformed child who has died.

podcast link

earlier podcasts about TinyPrincess discussed the problem of caregiving and burnout in the family due to her fragile nature and frequent seizures. They finally got help from some local sisters who do home care for the dying.

Much of this is overtly religious, but as a doc who worked with the poor, I might just say that it reminds one of how parents think and feel about their children: but few are articulate enough to put it into words.

This is the story told by a pious Catholic father, but the idea that a young child who dies, especially one who is "special needs", will await one in haven and even intercede for their parents is found in other religions, such as Islam.

Dale Evans (wife of Roy Rogers) had a child with Down's syndrome who died as a toddler of measles and wrote a book about her. Download it from this MN site, or borrow it  (free registration) from internet archive.

compare and contrast to many "opinions" of so called "bioethicists" who see them as useless eaters, better to be aborted or killed at birth.

Sigh.

often these families are helped by local churches (as in the podcast) and/or government programs.

and caring for a loved one, even in the USA, where the meme is that everyone is selfish, is astonishingly common: this site estimates 45 million caregivers who gave up time and work in the past year: often giving up their own outside job to properly care for the child or elder in their care.

Hospice care is often seen as sort of like a nursing home, but actually most hosice cases are also cared for in the home, with the hospice nurse helping advise in getting things to help the person (caregiver to do bathing, a hospital bed, adjusting pain medicine to keep the person free of pain but not oversedated).

but a lot of cases are from chronic disease. And the hardest cases are those with behavior problems: Severe ADHD in children with developmental disabilities, or Alzheimer's disease in the elderly.

Often the behaviors are hard to treat, so these people end up in nursing home or need frequent respite care to stop caregiver burnout.

Here in the Philippines, the extended family is the one who usually cares for the sick: often with outside help. For example, I hired someone to help me with Lolo at night, his cousin with a broken hip and osteoporosis and COPD that made surgical repair inadvisable was cared for by a cousin and her teenaged children, and Joy's pastor's son has family to care for him with a part time caregiver.

In the US, modern trends (to save money) insists people to be cared for at home (also because it is better for the patient) ignores an economy that insists women work full time to support themselves.

One result: A lot of caregivers quit their jobs or work part time to do this care. Adult day care and other activities help.