Finding Respite Caregivers for Full-time Caregivers 101

Rule #1:  Before you interview or hire, list the duties of the caregiver in detail, including when and how they are to be done.   A notebook of procedures, medicines, cautions, and responses, beginning with feeding is a good idea.  When and for how many hours will you need help?  What benefits will you offer?  Make the house rules very clear, especially regarding smoking, pets, children, eating, and phone usage.  If you have a "deal breaker," let them know in advance.

Rule #2:  Look for a caregiver with true compassion and an inordinate amount of patience.  Going through someone who already has a wonderful caregiver may result in better references than going through an agency. Some of our biggest failures were "professionals."

I strongly recommend nanny cams.  We tried out a number of applicants, before finding people who were truly caring.  A few of the people who didn't make the cut had drug, personality, or mental issues, which lead them into thievery.  The ones we kept have been wonderful, which the cameras confirmed.

Rule #3:  Finding a caregiver can be daunting, especially when the patient has a rare disease or unusual condition. Of course, it doesn't help to jokingly tell the caregiver that if the patient dies, it's their fault!  Don't terrify the respite caregiver!  Allow adequate time to instruct the respite caregiver in the major issues, expectations, crises, procedures, responses, and treatments that might arise.

Bombarding caregivers with all the things that might kill your loved one might boggle their brains. I've actually had people who were either experienced with my guys, experienced care givers, or nurses, tell me they were afraid to stay with them, out of fear that one or the other might have a crisis or die.  They are very fragile at times.

Perhaps my favorite caregiver memory happened while my husband was in the hospital following spinal fusion surgery. Although I had tried to warn the staff about his idiosyncrasies and his disease, they weren't prepared for what they got. As I entered his room, an experienced older nurse stood at his bedside with a look of utter frustration, confusion, and dismay on her face. As she watched my husband, she lifted her hands, palms up in surrender, exclaiming, "I don't know what to do!"  My husband was flopping around in his bed, naked as a jaybird.

Another nurse quickly joined us. Both explained that he refused to keep any clothes on, not even a gown or sheet.  His room was directly in front of the nurses station. He was placed there, so that every time a nurse passed, they could look in on him, to make sure he was okay. Trying to keep him covered to any degree of modesty or privacy challenged them.  With my husband, there was no gown or clothing on which to clip any of the monitors. The older nurse looked at me and asked, "What do I do?"  All I could do was laugh.

Rule #4:  You will, most likely, be paying out of pocket, unless you were astute enough to take out long term care insurance.  Medicare does NOT pay for long term care.  Medicaid will pay for someone, if you are poor enough.  Caregivers who live-in and are paid through Medicaid do not pay income tax on their income.  Consider having a live-in caregiver.