Almost every website or blog for caregivers includes a number of posts advising readers to take care of themselves.
Most lists will include some version of the following:
Get plenty of rest.
See your doctor regularly.
Don’t try to do it all yourself.
Some lists suggest a bit of pampering:
Take a bubble bath.
Get a manicure.
Put on some music and dance your stress away.
Put your feet up.
Go on vacation.
All of the above are excellent suggestions. When I was an in-home caregiver I longed to follow their advice and I believe the caregivers now reading your posts do as well. I also know how hard it is to have well-meaning people tell you what to do. What caregivers wonder is why people expect them to add more to their already nearly impossible list of things to do.
I remember how exhausted I was as a new mom. I walked around the house in a sleep deprived daze, my hair uncombed, teeth not brushed until late in the day. My clothes were often wrinkled and spotted with unidentifiable bits of stuff. I felt like crying much of the time.
Things were much different for the precious darlings in my care. They slept for hours during the day. Their tummies were full and their tiny sleepers were soft, warm, and clean. I often stared at them as they dozed, thanking God for bringing them into my life. I also remember that just as I was about to lie down and take a nap or grab a bite to eat, a heart wrenching wail would ring through the house and all thought of caring for me disappeared. People commiserated. Friends shared their own stories of caring for a newborn and some kind people brought casseroles so I didn’t have to cook. No one suggested I get plenty of rest, take a bubble bath, give myself a manicure or go on vacation. If they had I would have either laughed or cried, depending on the moment. Eventually things did get better. The baby slept through the night and so did I. My infant became a toddler and while life remained hectic it became manageable.
Replace the word mom with caregiver and a loved one’s name for the infant in the passage above and you get an accurate picture of life for a caregiver. The difference is, for a caregiver the cycle is reversed, toddlers become infants and infancy can last for years.
Sleepless nights, hour or longer feedings, frequent changes of bedding and adult diapers and tantrums become daily occurrences lasting for years not months. When I was able to get someone to come in for respite care Rodger punished me by acting out for days or weeks afterward. Often his temporary caregivers gave in and allowed him to feed himself and he’d aspirate and end up with a respiratory infection that landed him back in the hospital. His medication schedule would be disrupted and his daily routine would spiral so out of whack that he’d be a nervous wreck. Everything that went wrong and every new thing introduced caused some sort of regression either physical or mental. It became more and more difficult to determine which was worse, going without respite care or dealing with the aftermath.
I knew I had to take care of myself. I knew I needed to rest and take a hot bath, see my doctor for a checkup and go on a vacation with my husband. I knew the people offering advice meant well. What they didn’t understand was how much it would cost me to do as they said or how guilty it made me feel knowing somewhere down the line things would catch up with me.