Chronic Illness on the Family
Role of the Physician Assistant
The writer explains the impact of chronic illness on family dynamics from the viewpoint of both family and patient. The strategic role of the family’s clinical Physician Assistant in problem resolution is noted. This is a paper with three sources.
Impact of Chronic Illness on Family Dynamics
Chronic illness impacts a family’s dynamics in many profound ways, some obvious, and some not so obvious. In the book The Chronic Illness Experience: Embracing the Imperfect Life, the author reflects, “Getting sick for a lifetime is seldom a single, discrete event. The symptoms are more likely to come on gradually, altering your life in subtle ways that can often be explained away as a temporary aberration” (Register, 1999).
All types of families, and families in various stages, are affected by chronic illness. As a clinician, the Physician Assistant can play a strategic role in ameliorating and managing some of the stressors associated with chronic illness.
The impact of chronic illness on family dynamics affects both patient and family members alike. For example, let’s look into a hypothetical family where the husband is a morbidly obese diabetic with knee problems and obstructive sleep apnea. Attending work by use of an electric scooter and boot, the former high school athlete is known for his cheerful sense of humor and dedication at work. Management would be the first to list his managerial acumen, supervisory skills and work ethic as assets. However, his time on the job has been punctuated by time off work due to developing infections. Sometimes, these infections are a result of complications of “routine” surgery. Looking on, the employee feels envious as he sees new younger (healthier) managers being promoted, apparently on the “fast track.”
He huffs and puffs, loading and unloading his scooter from the company parking lot, often works 12-hour days, and feels exhausted by the time Friday rolls around.
In this scenario, one impact on the family may be his need to sleep in on weekends rather than participating in running errands, household chores, or interaction with the children. This places a heavier burden on his wife to insure the chores are done, the errands are run, and to break up the bickering that goes with sibling rivalry (“just wait until your father wakes up!”). While she knows her man works hard and she has compassion for his health problems, she feels lonely as she arises early and goes about her daily tasks. On Saturdays and Sundays, she wonders if it will be 2:00 or 3:00 P.M. before her husband wakes up.
A constellation of emotions are typically associated with chronic illness in the family:
The care recipient may feel guilty, and worry about becoming a burden and eventually being abandoned. The partner providing the care may feel overwhelmed and overburdened with once-shared responsibilities and, as result, may develop anger, hostility and resentment toward his/her partner”(“Impact,” par. 2).
The husband privately grieves the burden he places on his family. But you would never know it from the statements that he makes. He grieves his lack of energy and is depressed over the state of his health at a relatively young age.
Outwardly defensive, he continually complains his wife isn’t making enough money on her job, doesn’t do enough around the house, can’t handle the kids, etc. She says running the household is a full-time job and that personal problems always sabotage her efforts to sustain a lucrative career. He knows he can’t physically run all the errands, but tries to help by making his wife lists of things that need to get done, everyday things. When he comes home to bickering and a frazzled wife with nothing crossed off the list, he gets angry.
He’s depending on her to get them done.
Sleep schedules gradually become reversed. After a busy morning, she’s ready for an afternoon nap. He may be just waking up, having gone hours without a meal as a diabetic and is “grouchy as a polecat” wanting to go out to eat. He wants to go to bed early and needs quiet and darkness and hears his wife shushing the kids not to wake their father. His wife wants to get away from the kids awhile and read a book.
The wife nags her husband to go to the doctor more often. He hates leaving work to go to doctor’s appointments in the summer heat and urban traffic. He hates it when she calls the doctor’s office to leave notes for the clinicians to please “check the edema in Tim’s left leg.” It makes him feel like a child. He doesn’t want to be treated as a child. He resents when his wife “plays doctor” and blames his moods on high blood sugar after a Mexican restaurant buffet, low blood sugar (“crashing”) from not eating long periods in bed, not getting his sleep apnea re-checked, etc. He’s been overweight all his life. He knows she cooperates and makes healthy lunches when he tries to diet. But it seems like they get along best at those infrequent times when they go out alone for a special dinner. (She’s also overweight.)
The children in this family have their viewpoint too. They adapt to Dad’s sleeping in, but know he can be impatient for them to jump in the car once he wakes up if he wants to run an errand or go out to eat. They do their part helping load and unload the scooter for trips to the mall. It is heavy. They need a lift but can’t afford it. They are used to their Mom trying to referee their arguments. They see her holding back a big Master card bill or bad report card because Dad is having a bad day. Sometimes it seems like he’s having a bad year. Mom makes them scurry around before Dad gets home to straighten up the living room. They walk on egg shells and know he can’t help his moodiness. They see the looks they get when they go out to eat and people see how big Dad is and stare. They know they will go to Dad’s favorite restaurant where he doesn’t have a long walk in, and he knows the chairs are armless and sturdy. They worry about Mom never having any fun, just worrying about everything all the time. They worry about how Dad’s health only seems to get worse over time. Son Michael resigns himself to not having a Dad like other kids who can go outside and throw a football back and forth. Dad yells at him when trying to help with wiring or even changing a tire, but knows he has to be his Dad’s hands in tight spots. Dad can’t stand for long periods without being winded.
Types of Families
Families come in all shapes and sizes, and therefore are affected by chronic illness in a variety of ways. In a family with young children, if a spouse is lucky enough to be near extended family, reliance on the grandparents to help with the children on a Saturday may allow time for a breather. If a young child is the one with the chronic illness, husband and wife may play a blame game, trying to determine whose family’s genes caused the problem. Severe asthma in a child may prompt arguments every time one of them wants to visit his or her adult siblings due to the cigarette smoking in their house. A family with adolescents may face the ordinary challenges of teen rebellion in the midst of disabilities or chronic illnesses with even more difficult consequences. If one parent is impaired, the constant need for correction and carpooling kids to football practice, clubs and parties may seem never ending.
A chronic illness in a single parent family packs a double whammy. The parent is alone, quite possibly with reduced income, or at minimum, with tension regarding custody issues. A chronic illness in the single parent may interrupt the possibility for employment or they may be faced with unpaid time off work. They may be without a good employer health plan and use emergency rooms for acute minor illnesses. With no safety net physically or emotionally, they may continually fail to consistently follow up on chronic conditions that would be improved by more vigilant care. They live at the survival level on Maslow’s hierarchy of needs and are lonely for an adult conversation.
A blended family also has many unique challenges. Combining his, hers and ours can be a challenge. I once knew a young couple with the husband in a second marriage. The household consisted of two sons with ADHD, plus an elderly parent with Alzheimer’s disease with her adult daughter with Down’s Syndrome in tow. There was NEVER a dull moment, especially when Grandma starting taking off her clothes and running around the house when the sons had friends over. It makes you wonder why that second wife in her 30’s ever agreed to say “I do.”
Role of the Physician Assistant
As a clinician, the Physician Assistant can play a strategic role in ameliorating and managing some of the stressors associated with chronic illness in the families just described.
The boys’ ADHD can be detected and treated with one of the newer medications.
A referral to a clinical psychologist for family counseling might be in order. For those with elderly parents with Alzheimer’s disease, a listening ear, a recommendation to read The Thirty Six Hour Day, or talk about seeking out a nursing home and dealing with guilt may be in order. For the obese diabetic who hates doctor’s appointments, he may need a “short leash” on prescription refills to get him back into the office, or a gentle suggestion about bariatric surgery. Being aware of community resources is very important for a Physician Assistant in order to be able to help these families try to meet all their needs. Here are five examples of agencies and what they offer families:
Gilda’s Club – with chapters available nationwide, this agency helps patients and family members battling cancer.
CHADD – this agency helps families coping with ADHD in children, with local chapters that can provide information, speakers, and personal support.
Dental Clinics – low income families in urban areas may be able to make good use of county Health department dental clinics or low income interfaith dental clinics.
Domestic Violence Shelters – excuses for repeated fractures, bruises or strains in anyone should be taken seriously.
A phone number for a domestic violence shelter may be exactly the TLC a patient may need when they are in a receptive frame of mind.
Agencies available combating teen suicide can make a huge difference in the life of a family. We have to be on the lookout for telltale signs of self-mutilation, substance abuse or depression.
Facilities specializing in the mental health needs of adolescents are available.
Once diagnosis and referral is completed, the patient and family need to accept responsibility for managing their illness. A desirable shift that takes place in the locus of control from the medical practitioner to the patient.
Associated with a courageous acceptance of the impact of Lupus, which can only be achieved over a period of time and with considerable psychological effort, is the central concept of control. Initially, this is vested in medical attention, advice and medication. In the long-term, there is an inevitable shift as patients and families accept the need to play a major role in the management of the disorder of daily life. The taking over of decision-making and control – however simple and partial – is a crucial factor in the process of adjustment and learning” (Newcombe, 2002).
In conclusion, the impacts of chronic illness on the family may be as varied as the families themselves. However, the Physician Assistant can play a vital role in managing the negative effects.
References
Register, Cheri. (1999).
The Chronic Illness Experience: Embracing the Imperfect Life.
Minneapolis: Hazelden Information and Educational Services.
The Impact of Chronic Disability on Couples. (n.d.). Retrieved July 25, 2003 at http://www.lighthouse.org/supportgroup/discussion_guideimpact.htm.
Newcombe, Freda. (Rev. September 20, 2002). Chronic Illness – Impact and Response. Retrieved July 25, 2003 at http://www.infotech.demon.co.uk/Chron.htm
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