A caring touch can work wonders
I guess I’d give anything to get physical affection,” says Carol*, a former gymnast who lives in Nevada. She has had slowly progressive ALS (amyotrophic lateral sclerosis) over roughly two decades, but early in the disease her husband and caregiver became distant — “figured I’d die in a few years,” she says.
Carol’s problem is not uncommon. “From birth, all human beings need to be touched. We need and desire to be touched, to be reassured that someone is connected to us, cares for us, finds us acceptable or even desirable,” says Roberta Greenberg, a licensed social worker with the MDA Forbes Norris Clinic in San Francisco.
People who have serious physical disabilities, like Carol, need physical signs of caring as much as anyone. However, there are times when many people with disabilities get the impression that their caregivers find them a burden to be borne, a set of chores to be done.
When muscle diseases progress to the point that people need caregiving, spouses sometimes stop being sexual, and the person with the disease may become withdrawn, angry, depressed. “They may feel worthless and despondent, but may not say anything openly for fear of more rejection,” says Greenberg.
Children also can suffer from lack of caring touch. There are many factors that affect parents’ and family members’ bond with a child with a disability. Parents may be mourning the loss of the healthy child they expected, learning how to cope with a new reality that includes a lot of medical appointments and equipment, and struggling to find appropriate child care providers and babysitters.
The effects of touch deprivation on a child can be profound, causing feelings of shame and worthlessness, states Dan Hughes, a therapist specializing in childhood trauma and attachment issues and author of Building the Bonds of Attachment (Jason Aronson; August 28, 2006).
Hughes notes, however, that “if the child had some unconditional acceptance and support at some point, it will give him the ability to see another perspective.”
Silence doesn’t help
Part of the problem is that people who have serious disabilities and have uncaring (or even abusive) caregivers are likely to keep it to themselves out of a fear that they will be treated worse or be abandoned.
Often, they don’t see any other options for themselves. Carol, the Nevada gymnast with ALS, moved into a hotel as her husband’s verbal and emotional abuse escalated. “I thought I could do it on my own, living in a hotel,” she says. But after two months of struggling to do everything alone, she moved back in with her husband. She felt her only other option was a nursing home.
Other times, people with disabilities may be ashamed to admit their situation. This can be true for anyone, regardless of age, intelligence or wealth. For example, over a period of a few years, world-renowned scientist Stephen Hawking, who has advanced ALS, was seen in a hospital for a broken arm, broken wrist, black eyes and gashes on his face. He also was left outside on a very hot day until he had heatstroke and had to be hospitalized.
Yet Hawking’s response was, “I firmly and wholeheartedly reject the allegations that I have been assaulted.”
What to do
If you’re the care receiver and feel your caregiver is perfunctory and lacks warmth you need to: Find an MDA support group either online or locally; talk to your physician, who can direct you to resources; join a group that shares your interests (Carol joined a Bible study group where she gets lots of hugs); and call 911 if you fear you’re in danger.
If you’re the caregiver and find it difficult to bond with your care receiver: Consider therapy or a support group; arrange regular time off to care for your own needs; and schedule a sensory or esteem-building event for your care receiver every day — gentle hair brushing, a back rub, even a friendly game of checkers can help create a positive atmosphere and build a better relationship.
It doesn’t have to be much. For example, when changing someone’s shirt, give a quick hug when the shirt is in place. Or, if a hug is inappropriate, simply tell the person how attractive they look.
Little things can make a big difference. “Perfunctory caregiving can give your loved one the idea that they’re unwanted or even repugnant,” says Greenberg.
*Name has been changed.
It was a picture of a drum that opened my eyes to the fact that my daughter Katie’s medical problems were keeping her from experiencing — and understanding — the world the way her peers did.
Katie, who had SMA, was three years old and being tested for some governmental program. When she couldn’t identify the drum, it was a mark against her score. You can bet she had a drum by that night!
Everyone deserves to experience the world in a visceral way. Someone can spend all day describing how waves feel, but sitting on the sand (with a caregiver) at the edge of the beach while little waves come and go, gives a better understanding than any words can say.
Whether you are a care receiver or a caregiver, be aware of the environmental experiences that are all around you, and take advantage of them. Then the next time someone raves about the taste of just-picked berries, you’ll know exactly what they mean.
— D. Albrecht