Wednesday, March 16, 2016

Parenting Pointers: “Don’t Bother,” Challenges of the Invisible Caregivers

Excerpted from a piece by Pamela D. Wilson, CSA, MS, BS/BA, CG

According to the CDC (2015) one in six children aged 3-17 have one or more developmental disabilities that result from an impairment affecting physical and cognitive skills, learning ability, language skills, or behaviors. Common disabilities include intellectual disabilities, cerebral palsy, autism, Downs’s syndrome, and disabilities by other names.

Parents of disabled children learn to respond to behaviors, juggle hectic therapy schedules, experience financial challenges, discrimination, and many times long waiting lists to be accepted for community services or to process social security disability or Medicaid applications. Many couples divorce as a result of the stress of the situation. Many lose friends who are unable to understand the challenges of the day to day situation of raising a developmentally disabled child. 

While we hear about caregivers of the sick, the elderly, and the older who are disabled, we rarely hear about caregivers of developmentally disabled children. Why? Because raising children comes with having children—and children are expected to have a long life ahead of them. The elderly are more often a topic of conversation because at end of life they represent a greater cost to the healthcare system and the benefits of extending their lives are debatable.

One aspect in common to most, if not all caregiving situations, is the aspect of guilt. Parents raising developmentally disabled children wonder if they should have noticed the disability earlier. Guilt may be experienced when raising children without disabilities with disabled children—are we giving enough attention to each child? Family or friends may lack empathy of the demands of the care situation. Neighbors—unfamiliar with the situation—sometimes report parents to child protective services who they believe are not appropriately caring for their own children.

How might parents with a disabled child manage and support a normal family life when there are non-disabled children in the family—is this even possible? What insights might be helpful for parents of disabled children who feel separated or isolated from general society because they have a child who is different? How might others view parents and disabled children whose behaviors may not be viewed as appropriate? What single support contributes to the overall caregiving situation that many individuals and most families find difficult to accept? How might caregivers survive without compromising their own physical and mental health?

To answer these questions, I asked my friend, Tracie, for insight into her family’s interactions over nearly two decades in raising a daughter diagnosed with autism. To these insights, I added my personal and professional experiences to result in 5 tips for caregivers: 

Be HONEST and realistic about the diagnosis with yourself, your family, your child, and others. Never be embarrassed about your family, the care situation, or the diagnosis—there are many others in a similar situation who understand. If others respond inappropriately their behaviors and reactions are their responsibility—not yours. Denial is a dangerous road and is not helpful to the care and well-being of the person with the diagnosis.

While some families may desire privacy, hiding a family member from interaction with others under the guise of being protective is not supportive of the individual becoming as independent as possible over the long term. I know many individuals who were sheltered by their parents and who struggle in their 50’s to acquire and learn the simple skills of daily hygiene and appropriate social interactions with others. In retrospect, attempts of parents to shelter their children, who are now older, has resulted in greater stress experienced by these children when parents pass away and they are forced to face the day-to-day reality of becoming independent.

My friend, Tracie says, “It’s okay and helpful to acknowledge the label which for our daughter is autism. We have learned to talk about autism as if it is a common cold. We use this to leverage Taylor’s strengths and to find a work around for areas of personal development.”

Seek KNOWLEDGE and insight make the role of caregiving easier. Often day-to-day responsibilities, last minute crises, and minute-to-minute caregiving tasks take priority over time for self-education, learning, or attending support groups that offer strategies for managing day to day challenges. Admittedly time poverty exists—how can I or we find a single minute to devote to something other than direct care tasks? Find the time.

In the world of the developmentally disabled, understanding behaviors, appropriately responding to behaviors, and identifying the reasons or the triggers of the behavior is imperative to self-preservation and successful family relationships. Time spent in gaining insight and understanding of aspects of the particular diagnosis supports a long term strategy for caregiving and is a significant time saver to resolving situations earlier than years down the road. Why repeat challenging situations when knowledge is a powerful antidote?

According to Tracie, “all of us in the family began to understand why my daughter behaved in certain ways and how to avoid some of the behavioral outbursts. We now realize that there are some situations that are not avoidable, and that a meltdown will occur, but that’s okay. Once we learned to accept and overlook some of the behaviors we were much happier or at least content. The confidence we gained has been a key aspect to maintaining our own positive mental health.”

As caregivers of the developmentally disabled are able to recognize these behaviors and traits— including the positive and negative aspects—communication and interaction become easier due to increased understanding of the individual. This does not mean at all that behaviors are not challenging. Learning appropriate responses supports ease of daily interaction and reduces the emotional stress of the caregiving situation. Many times caregivers fail to realize that the behavior of the caregiver is a trigger for the behavior for a child with a developmental disability. This is insight is also relevant to caregivers of persons with Alzheimer’s disease; many times the caregiver or the environment causes the behavior.

Find the HUMOR. Humor and laughter are essential to caregiving situations. There are times when it is necessary and okay to step back and laugh—sometimes hysterically—at the repetitive questions and behaviors, or situations that are embarrassing but humorous. I recall a time in the bathroom of a physician’s office attempting to obtain a urine sample from one of my clients who said with a smile, “it’s hell to get old and need help with this type of thing.” We were laughing so hysterically that I’m certain others outside of the bathroom were wondering what we were doing.

Other examples: wearing clothes that don't match or are inappropriate for the weather—but I'm dressed so what’s the problem?  There is also the challenge of understanding the feelings of the person with the disability—this is what my mad face looks like or I hit my arm when I’m frustrated with you. Also existing is the challenge of the disabled person being able to understand the feelings of others or how their words or statements might offend others—that’s an ugly baby.

Just as with some older adults diagnosed with Alzheimer’s disease who lack filters for appropriate conversation or social skills, the words of the developmentally disabled are simply stated without thought of the effect on others. Then there are the confusing conversations that arise because many of us use figures of speech like “it’s raining cats and dogs.” Persons with developmental disabilities have no idea how to relate to these illogical statements.

Tracie calls these repetitive questions and behaviors from her daughter “Taylorisms.” Her family has come to understand and to embrace the sometimes challenging, sometimes amusing, and sometimes totally honest expressions and behaviors of her daughter which others may not understand or appreciate.

ACCEPT help. Know that it is imperative to seek help from others in similar situations and then to accept the help offered. The idea of accepting help for many caregivers is challenging because many believe that they have to “do it all.” No one single caregiver, regardless of the situation, can do it all without damaging their own physical health and mental well-being.

According to Tracie, “help can be found in the most unusual places or unexpected people. Early on I was guilty of sheltering Taylor. In our mind's eye, we were protecting her, but through experience in our day-to-day lives I have seen most folks be patient, understanding, and want to make accommodations. I had to learn to give others the opportunity to show their kindness.” 

EMBRACE the caregiving journey and learn to advocate. The role of caregiver is not easy. Tracie’s advice, “you may lose some friends along the way but these may be few compared to the many friends, neighbors, family members, teachers, therapists, doctors, and strangers who are there to help.”

Never let another person tell you “don’t bother” or “he or she is too old” or a long list of insensitive statements that make you as a caregiver feel hopeless or hesitant to aggressively advocate for a loved one.  Over the years I continually meet physicians with poor bedside manner who believe that a person is undeserving of medical care, “after all he’s 95.” I meet others lacking caregiving experience offering unsolicited advice but no support. Until a person has walked in your shoes it is difficult to understand your daily reality.

Gain the knowledge to be an advocate or hire the services of an advocate. Advocacy is a learned skill. Advocacy takes courage. Do bother to become more knowledgeable, more honest, more accepting of help, and find joy in the humorous situations that one might find frustrating at times. Caregiving is not for the timid—be visible and share what you have learned with others.

Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM.  In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, will be available on October 6, 2015 through all major bookstores as well as on  You can find her on YouTube, Facebook, Twitter, and Linked In

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