Managing Complex Care at Home

An increasing number of family caregivers are performing more complex medical care for their family members at home. According to Home Alone Revisited: Family Caregivers Providing Complex Care, a report prepared jointly by AARP and the United Hospital Fund, there is an increase in the number of family caregivers performing tasks that would, in the past, have been provided under the direct supervision of a medical professional. The report concludes that “… it is presumed that every home is a potential hospital and every service the person needs is provided by an unpaid family member…”

Advanced home care ranges from managing complex medication routines, injections, tube feedings, peritoneal dialysis, wound care, incontinence care and using specialized medical equipment. When families are faced with bringing their loved one home from the hospital after a devastating health event, they are expected to learn and perform these kinds of tasks in addition to providing basic care.

The reasons why family caregivers might feel obligated to take on this additional care include:

■ It allows them to feel like they are fully contributing to their loved one’s care.
■ A promise is made not to put their loved one in a nursing facility.
■ There was no other choice given at the time of discharge and insurance doesn’t cover the kind of care needed.

Imagine providing complicated wound care for a loved one with the teaching provided to you on the day of discharge. Would you feel prepared to manage it all when you are alone at home? Would you have concerns about making a mistake and causing your loved one pain or even more complications? How can family caregivers make sure they are ready and have the support after discharge? Here are some findings that came out of the AARP report which you may want to consider:

■ Demand to be part of the care planning process and discharge meetings. This will ensure the discharge team understands your ability to manage the kind of care expected.
■ Ask the planning team what kind of support you will have at home in case you have questions or find yourself unsure of the procedures.
■ Ask for the instructions in writing.
■ Do not allow the team to assume you can manage the tasks at hand. Advise them that you are anxious about doing the care and ask for a referral for in-home support resources.

When considering home care support, family members should make sure the provider is licensed to provide more complex care. Also, oversight by a licensed medical professional such as a registered nurse, will give family caregivers additional reassurance that care tasks are performed safely and with enough hands-on practice to prevent another hospitalization. With an increasing number of families facing this type of situation, there is a growing need for periodic — and sometimes ongoing — home care support.

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