The Worn-out Caregiver

Carol awoke to the sound of the alarm clock playing a favorite melody of John Denver from the local radio station, as the sun began to stream into her bedroom window. “Omygosh, I am late for Mom’s Doctor appointment” she thought, as she hit the snooze button for the third time. Her state of complete physical, emotional and mental exhaustion that had been building over the past 14 months since Jan, her mother, had fallen and broken her hip during an ice storm in their rural southern town, had gone from bad to worse. Every day had begun to feel like a record that was spinning faster and faster with no signs of slowing and no way to turn it off. She felt guilty for not being able to keep up with the follow-up rehabilitation appointments that conflicted with her work schedule and her son’s after school extra-curricular activities.

Over time, Carol began to start missing those weekly “girl’s night out” gatherings at a local restaurant where she kept up with the social scene and enjoyed the company of her lifelong friends. She missed those nights. Now that time was spent over at her mother’s home, helping with cooking meals and spending time with her.

Carol’s husband noticed a difference in her attitude toward him, as well. She didn’t seem to enjoy the weekends that they spent away in the country. She seemed to always be on the phone with her mother checking in to make sure that everything was alright and jumped at the chance to answer the cell phone whenever it made that familiar sound, stating, “Hold on a sec, it might be mom”.

Carol found that she was unable to sleep many nights. She would lay awake thinking about the various doctor appointments that were scheduled or whether she had reminded Jan to take the new prescription medication that her cardiologist had suggested last week. When she finally did fall asleep, the sleep didn’t feel very restful, and often Carol woke to the sound of music on the alarm clock and simply hit the snooze button, wishing for the opportunity to sleep the day away.

Probably the most disturbing thing to Carol, were the strange thoughts she would have from time to time regarding her mother and her wellbeing. Carol felt jealous that her mother was garnering all the attention of the family and frustrated that no one else was willing to help in the daily grind of bathing, dressing, cooking, appointments and social time that never seemed to end and seemed SO unappreciated and unrecognized. Lately, Carol had even had thoughts like, “hmmm…if I just was a little more careless, I would break MY leg and wouldn’t have to do all this work”, or “I wonder what would happen if I swerved into oncoming traffic…would the airbag deploy and save my life?”

Whether Carol realizes it or not, she is a classic example of someone that is dealing with Caregiver Burnout. What starts as a sincere and loving expression of a need to help an aging parent with some of the most basic of needs, can evolve into a life crippling illness if not recognized and appropriate steps taken to insure that the loved one and caregiver are both getting what they need to maintain a healthy relationship.

Caregivers are often so busy caring for others that they have a tendency to neglect their own physical, emotional and spiritual health. The demands that are placed on a caregiver’s body, mind and emotions can easily seem overwhelming. As a result, as sense of hopelessness and fatigue begin to creep in over time. It starts with simple duties, but as the needs of an aging parent increase, so do the demands on the part of the caregiver. In many cases, children caregivers link their love for a parent to their ability to handle the increasing demands in their care. Thus, as the care demands increase, the motivation to keep up with demands is driven by the greater need to show love and in some cases a need to alleviate guilt.

Some caregivers place unreasonable demands upon themselves, partly because they see providing care as their exclusive responsibility. Often this is as a result of their role in the family as they were growing up. In many cases the oldest or only child will assume a leadership role and assume exclusive rights to all care, having great difficulty in sharing the role with siblings or outside caregivers.

Other Caregivers become frustrated by a lack of resources and skills to effectively plan, manage and organize their loved one’s care. It can become very difficult to care for a loved one if you can’t afford the medication that they have been prescribed by the doctor and that is essential in the prevention or maintenance of the illness. The sense of failure that results from not being able to provide monetary resources can be overwhelming, when compared with stories being shared by some people who claim they will “do whatever it takes” to care for a loved one at home. Some Caregivers may simply not know how to navigate certain social programs like Medicare and Medicaid. Recent changes to the Medicare Part D system have proven that a majority of Americans have difficulty obtaining the skills necessary in understanding how to help a loved one.

Many Caregivers have unrealistic expectations about the effect that their involvement will have. Caregivers may expect their involvement to have a positive effect on the health and happiness of their loved one. This expectation may be largely unrealistic when it comes to certain people who are suffering from a progressive disease such as Parkinson’s or Alzheimer’s. The ensuing frustration and depression can be overwhelming unless the caregiver is given more realistic expectations about the effect of his or her actions.
Other factors related to Caregiver burnout include role confusion and lack of ability to recognize when they are burned out. Many people are confused when they are thrust into the role of caregiver. It can be difficult for a person to separate their role as caregiver from their role as spouse, child, or friend. Inability to function effectively in the care giving role and succumbing to illness are the results of a caregiver that has not realized or not recognized that he or she is in the cycle of Caregiver Burnout.

Preventing Caregiver Burnout starts with being willing to allow others to become a part of your care giving TEAM. For the caregiver that has difficulty in believing that this role is anything other than exclusive, this may be very difficult. Start by knowing your limits and perform a reality check of your personal situation. Ask question like, “Am I physically up to the challenge of helping move a body? “, or “Does my busy schedule allow me to take on the additional periods of time this will require? Be completely honest with yourself. If the answer is no, or I don’ really know, it may be time to rethink your care giving abilities.
Find someone you really trust. Think of someone in your circle of friends, co-workers or neighbors that you come in contact with or speak with on a DAILY basis about your feelings and frustrations. Ask for honest feedback about changes in your attitudes and behaviors since you begin care giving for a loved one. This won’t work unless you are willing to let them be completely honest with you and give you the feedback that is necessary in determining whether you are suffering from caregiver burnout.

Take the time to set some realistic goals regarding your duties involving care giving for your loved one. Are there certain appointments that you could ask a neighbor or sibling to cover? What additional resources do you have in the way of people, time and talent that could serve your purpose to alleviate some of the stress coming from not having enough of any or all of these?

Be realistic about your loved one’s disease, especially if they are progressive diseases, such as Alzheimer’s or Parkinson’. Remember that it is not your or their fault that the disease is progressive and that it does not respond in the way that other diseases might. Recognize that frustrations associated with these diseases might be special and more difficult and seek appropriate outside help. This may require coming to grips with a certain amount of denial that surrounds the onset and progression of these diseases.
Don’t forget about yourself because your too busy caring for someone else. Take the time to go to a day spa and pamper yourself. Do this on a regular basis and treat it as important as the care giving that you are doing. Set aside time for yourself, even if it is only for an hour or two. Remember, taking care of your self is not a luxury; it is an absolute necessity for caregivers.

Accept your feelings as real and important. Having feelings such as frustration and anger about the person for whom you are caring for is a very normal part of care giving. Learn how to develop some new tools for coping, such as humor and meditation. Remember to lighten up and accentuate the positive. The attitude that you bring into the care giving situation will most like be reflected in part by the person you are caring for. Regardless, a healthy attitude of “I will do my best, and not worry about the rest” will do wonders in alleviated care giving stress.

Finally, consider joining a caregiver support group. One of the greatest ways to manage the stress experienced by caregivers is sharing your feelings and experiences with others in the same situation. The networking and support of others going through similar circumstances can be invaluable in your search to find a health balance in your care giving duties.