Better caregiving support delivers better than average care. Caregivers work long hours, caring for their family, caregiving for an aging parent, spouse or another family member. One day runs into the next. Care receivers rely on help from family and others. Many caregivers ask themselves why caregiving is so exhausting.
What can be done to deliver better than average care? When we open our minds to sharing and learning from the experiences of other caregivers, it is possible for better caregiving support to deliver better than average care? Yes, if care receivers and caregivers show up and participate.
With participation, loved ones receive better care. Caregivers become more confident. Self-esteem increases and relationships improve. 
The role of caregiving has long term risks for physical and mental health that include social isolation, loneliness, stress, and lack of sleep. Recognizing concerns common to all caregivers leads to solutions and better support for caregivers and care receivers.
Acknowledging Caregiving Challenges Supports Positive Results
Caregivers meet with me and feeling embarrassed that their family does not get along or that they are angry at a parent or spouse. Frustrations are shared about coordinating care. All of these feelings are normal.
On any given day, battles occur with physicians, insurance companies, assisted living staff, caregiving agencies and others involved in caregiving. When the number of people and systems involved in caregiving grows, trying to manage care is challenging. It’s easy to become frustrated when caregiving feels like it is too much.
A Medical Appointment Gone Wrong
A simple example of caregiving frustrations is a medical appointment gone wrong. An adult child caregiver takes the afternoon off work to take a parent to a medical appointment. The drive to the parent’s home is 30 minutes. The parent who should be ready to leave is not. The caregiver rushes.
The drive to the medical office is another 45 minutes. Then there is wheelchair coordination out of the house and into the car, parking at the medical office, out of the car into the wheelchair, using the elevator to arrive at the office.
The caregiver arrives at the appointment on schedule. Upon check-in, the desk staff advises that the doctor was called to emergency surgery.
The medical office staff has no idea of all of the steps that were required to arrive at the appointment on time. They have no idea of what rescheduling the appointment means to the work schedule of the caregiver or to the aging parent for whom leaving home is physically difficult.
After explaining the challenges of arriving at the appointment, the medical office staff refuses to attempt to find another provider at the office who might be able to see the aging parent.
As a professional caregiver, I have experienced similar situations. Late transportation. Appointments canceled by the doctor’s office without notice. Caregivers who were to accompany the client that did not show up.
Coordinating with providers and the healthcare system can be a calamity of not one, but many things that go wrong. These situations are difficult to manage.
Expressing Frustrations is Positive
Because the caregiver bears the majority of tasks and projects, caregiving support is necessary and valuable to achieve successful care for aging parents, spouses and family members.
Caregiving can be a love-hate relationship. One day we hate caregiving and everything involved with being a caregiver. The next day we can’t imagine not being a caregiver and feel guilty for complaining.
Expressing emotions is positive. Statements like, “I wish I never became a caregiver,." or “I hate my mother (or father) today because she (or he) yelled at me and I’m having a hard-enough day the way things are going.." It is common on any day to say, I’m so tired of being a caregiver.
While I do not recommend saying these things directly to the person for whom you are caregiving, there is a time and a place to express frustration. This quote mirrors this idea.
“The real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment.." Dorothy Nevill
Expressing emotions within a caregiving support group where it is safe to say what you think helps burn off feelings of frustration and anxiety. Tomorrow is another day, caregiving will return to being wonderful, and you will love your parent.
The Value of Caregiving Support
It’s time to speak about caregiving issues and feelings as commonly as we talk about the weather. Many caregivers are afraid of asking questions and seeking support. Common wisdom is that if you “don’t ask you can’t get.."
There is no reason to suffer in silence or to suffer at all. The role of being a caregiver and working with the healthcare system and the caregiving system is complicated.
Medical providers speak a different language. Information is not explained clearly or is complicated. Information not understood or clearly explained results in communication gaps and mistakes.
Communication breakdowns occur in caregiving just like breakdowns occur in every area of life. Information relayed incorrectly or assumed happens daily in most interactions with friends and family.
The ability to ask questions and to advocate are skills that caregivers gain through participation in support groups. Information learned and skills gained to care for aging parents and spouses is extremely valuable. These skills can be transferred to other areas of the caregiver’s life.
What Caregivers Have in Common with LeBron James, Angelina Jolie, and Madonna
Experts are people who know more than we do about any subject and whose efforts are successful. Experts have more experience in years or in the number of repeated experiences. They devote their lives to a single area like medicine, sports, or entertainment.
An expert in one area is not an expert in another area. Most people are out of their element when caregiving becomes a responsibility. We may be great in our area of expertise and not so great with things we don’t know.
Examples of leaders and experts for men are Tom Brady in football, or LeBron James or Stephen Currey I basketball. Whether you like these athletes or not, their years of experience and repeated practice and efforts generate wins and positive results.
A 2018 survey from Harper’s Bazaar confirms some of the most admired women in the world to be actress Angelina Jolie, Michelle Obama, Oprah Winfrey, Taylor Swift, and Madonna. (1) These women have expertise in theatre, government, television, and music.
Experts come in all shapes, sizes, and specialties. These are individuals we look up to as role models with accomplishments that we may never reach.
I can tell you with absolute certainty, that somewhere in the lives of these experts and leaders, that they have been, are, or will be a caregiver. They too need caregiving support from experts who know what they don’t know about caregiving.
Asking for help is a skill that experts embrace, rather than fear. Asking for help is the quickest route to solutions and answers.
The Value of Experts is Priceless
You see the word priceless, and your mind goes to thinking expensive. This is not always the situation.
If you were given a single hour to spend with Tom Brady, LeBron James, Stephen Currey, Angelina Jolie, Michelle Obama, Oprah Winfrey, Taylor Swift, or Madonna what insights, expertise, or recommendations would you gain? What difference would this experience make to your life?
Thinking about this on a smaller scale. Have you ever had a helpful person save you time, effort, money, or frustration?
One example may be a store clerk helping you find an item that you could have searched an hour to locate. What about a pharmacist explaining a medication that had the same benefit but was $50 less in cost because it was in (rather than out) of your health insurance plan? A car mechanic tells you that the expensive car repair you thought you needed is not necessary; a $10 part will solve the problem.
Using specialists in different areas of life saves time, money, effort, and delivers better results. Better support delivers better than average care.
Better Support Improves Delivers Better Than Average Care
Specific to medical care for aging adults, my recommendation if one is available, is a geriatrician. Geriatricians are physicians who specialize in the care of older adults. After a geriatrician, then seek medical specialists like cardiologists to treat heart disease, endocrinologists to treat diabetes, pulmonologists to treat COPD and breathing issues.
Specialists have the skills and offer better support to deliver better than average care. While an appointment with a medical specialist may seem like one more appointment, the care loved ones receive can make a night and day difference.
The same expertise applies to working with a caregiving advocate or expert. The value I provide to clients is 20 years as a professional caregiver being on call 24/7. Yes, I agree. Being on call 24/7 sounds almost crazy, this is factual.
My husband will attest to phone calls during vacations, being called out of a movie theatre to respond to a client emergency, interruptions during holiday dinners, and middle of the night phone calls. I know that family caregivers experience similar schedules with catastrophes always waiting until a planned vacation or a day off.
How do loved ones know when we are trying to get some time for ourselves? Never fail, the phone rings or an emergency happens to interrupt the planned bliss of the caregiver.
The experiences I’ve had being legally responsible for the care of hundreds of clients is difficult to replicate. I save my clients time, money, effort, and help them receive better than average care.
All of the above suggestions involve achieving positive caregiving results and better than average care for loved ones. What about care for the caregiver? What about the worrisome and negative long-term impacts on the caregiver?
Long-Term Impacts of Caregiving on the Caregiver
Caregivers take feelings of overwhelm, exhaustion, and isolation in stride not realizing the longer-term impacts. Here are tips for caregivers to better support yourself in achieving positive caregiving results and better than average care for yourself and for loved ones.
Many of these tips apply to persons of all ages including aging parents, spouses, and other family members who receive care from the caregiver.
1 Social Isolation and Loneliness Have Negative Health Effects for Caregivers and the Elderly
Loneliness is a major risk factor for depression that speeds the physical decline of the body due to the development of chronic health diseases. Loneliness and the associated effects increase the likelihood of death. Loneliness is also an increased risk factor for memory declines and a diagnosis of dementia
Social isolation results in a higher risk for heart disease and stress on the body. Heart disease and stress have negative effects on health. Brain health declines when individuals are isolated. Limited social interaction and participation in activities with others have a negative effect on overall health.
Isolation and Loneliness Reinforce Importance of Participation in Caregiving Support Groups
The negative effects of isolation and loneliness reinforce the importance of participation in caregiving support groups. Through participation in groups in person or online, caregivers meet and communicate with individuals experiencing similar life caregiving situations. Feelings of loneliness decrease when caregivers connect on an emotional basis.
Research studies confirm that depression symptoms are twice as common among caregivers than non-caregivers. (2,3) Caregivers of individuals diagnosed with Alzheimer’s disease who exhibit behaviors are more highly depressed and express feelings of burden. (4) Behaviors play a significant role in the decision of a caregiver to place a loved one in a care community. (5)
Just knowing that someone “is there." who can be contacted makes a significant difference for a caregiver who may feel isolated or alone. Relationships initiated through in person and online groups can transfer to friendships, social interaction, and participation in activities outside of the group.
Caregiving support can reduce negative health effects by providing social interaction with individuals who foster positive feelings. Appreciation and validation by other caregivers balance negative emotions that result from a lack of appreciation or feeling valued by the care recipient.
2 Stress is Bad
Stress is part of daily life and makes us feel overwhelmed, anxious, and sometimes depressed. There is no debate that stress is bad mentally and physically for the body.
Caregivers experience more stress than the average person because of the roles and responsibilities of caregiving. Caregivers for persons with Alzheimer’s disease or dementia experience even higher levels of stress.
Caregivers commonly describe isolation as contributing to the stress of caregiving. Chronic stress is associated with poor health. Reports of stress by caregivers differ. “Caregiving has been considered a prototypic example for the negative health consequences of chronic stress.." (6)
Caregivers who experience no or low-stress benefit from receiving positive emotions and interactions from the persons for whom they caregive. Higher levels of caregiving stress result from caring for someone who is unable to express appreciation or gratitude for the support provided. Higher stress also results in situations where behaviors of care recipients diagnosed with Alzheimer’s disease are unpredictable, unmanageable, or threatening.
3 Caregivers Need More Sleep
Caregivers are sleep deprived. Caregivers who work, care for their own families, and care for aging loved ones forgo sleep for constant activity. Family members caregiving for an individual with Alzheimer’s disease may be awake all night with an aging parent or spouse.
Lost sleep results in feelings of crankiness, exhaustion, and being less able to function. Loss of sleep negatively impacts memory, results in mood changes, increases difficulty with thinking and concentration the likelihood of an accident. (7)
According to sleep doctor, Michael J. Breus, sleep deprivation makes people feel more lonely and social withdrawn and makes others want to avoid social interaction. Sleep deprived people are more withdrawn, avoiding social contact in ways similar to people experiencing anxiety. (8)
4 Keep Your Heart Healthy
A healthy heart results in a healthy brain. The heart pumps blood throughout the entire body including the brain. When blood vessels and arteries are damaged heart disease occurs, the likelihood of a stroke increases, and eventually a diagnosis of dementia may occur.
Controlling risk factors like high cholesterol and triglycerides, and managing high blood pressure is important to avoid heart disease. Diet and exercise support a healthy heart. Exercise supports an increase in oxygen which helps the heart work efficiently and supports blood flow through the body.
Research confirms that changes in the brain occur as early as 10-20 years before a diagnosis of dementia. (9) High blood pressure in middle age is associated with an increased risk of developing dementia. (10) Because heart function affects circulation in the body, high blood pressure is a cause of vascular dementia and increases the risk of stroke.
5 Engage in Physical and Mental Exercise
Being active physically and mentally helps supports the body and the mind. We feel better when we are physically active. We have more energy and can more easily manage stress.
Exercising the mind and body is positive at all ages. Exercise has the mental benefit of improving mood and clearing the mind of worry and stress. Managing weight is easier when physical exercise becomes a habit.
Learning new things like a foreign language, a new computer program, or working through crossword puzzles helps keep the brain active. Even simple things like brushing teeth with the opposite hand train the brain to learn a new skill.
Physical and mental activity can be social which addresses the concerns of social isolation and loneliness. Going to a gym or connecting with others for physical activity can build and support social connections.
Maintaining Balance
The importance of caregivers working to maintain balance cannot be understated. When caregivers feel better and stress decreases, better support is provided to loved ones resulting in positive caregiving experiences and better than average care.
Maintaining balance like all things takes effort. The thought of adding more to an already busy schedule may seem impossible. Caregivers are often supertaskers meaning that they accomplish more than the average person.
Joining a caregiving support group helps maintain balance. Caregivers will become more comfortable using the skills of delegation where possible and asking help from others. Other caregivers will share experiences on taking back part of their lives. Collaboration and camaraderie results in better care.
Positive caregiving is possible. Better than average care is possible. The path to success is showing up. Caregivers are more confident with participation in caregiving support groups. Both care receivers and caregivers who show up and take a more active role in learning about care concerns and participating in solutions experience better results.
Sources:
(1) Blair, Olivia. These Are the 15 Most Admired Women in the World. Harpers Bazaar. 4/11/2018. https://www.harpersbazaar.com/uk/celebrities/news/g19741574/most-admired-women-in-the-world-yougov/
(2) Clyburn, L.D. Predicting Caregiver Burden and Depression in Alzheimer’s Disease. Journal of Gerontology. Social Sciences. 2000, Vol. 55B, No. 1, S2-S13.
(3) Baumgarten, M. et al., Validity and Reliability of the Dementia Behavior Disturbance Scale. Journal of the American Geriatrics Society, 38, 221-226. https://www.ncbi.nlm.nih.gov/pubmed/2313003
(4) Cook, K.M. et al. (1997) General and Specific Events and Depressive Symptoms in Alzheimer’s Disease Caregivers. American Journal of Alzheimer’s Disease, 12, 32-34.
(5) Cohen C.A. et al. (1993) Factors Determining the Decision to Institutionalize Dementing Individuals: A Prospective Study. The Gerontologist, 33, 714-720. https://www.ncbi.nlm.nih.gov/pubmed/8314097
(6) Lockenhoff, C. E. et al. Five-Factor Personality Traits and Subjective Health Among Caregivers: The Role of Caregiver Strain and Self0-Efficacy. Psychol Aging. 2011 September 26(3): 592-604. Doi:10.1037/a0022209.
(7) Peitrangelo A. and Stephanie Watson. Effects of Sleep Deprivation on Your Body. Healthline Plus. 6/5/2017. https://www.healthline.com/health/sleep-deprivation/effects-on-body#1
(8) Breus, Michael J. Ph.D. The 2-Way Street Between Loneliness and Sleep That’s a Very Big Deal For Your Health. 9/11/18. https://thesleepdoctor.com/2018/09/11/the-2-way-street-between-loneliness-and-sleep-thats-a-very-big-deal-for-your-health/
(9) Beason-Held, et. al. Change in Brain Function Occur Years Before the Onset of Cognitive Impairment. The Journal of Neuroscience, November 13, 2013 33(46) 18008-18014. http://www.jneurosci.org/content/33/46/18008.full
(10) Kennelly, S.P. et. al. Blood Pressure and Dementia – A Comprehensive Review. Therapeutic Advances in Neurological Disorders, (2009) 2(4) 241-260. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002634/pdf/10.1177_1756285609103483.pdf Doi: 10.1177/1756285609.103483.
Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate and speaker who solves caregiving problems. Since 1999, she has been a direct service provider as a court-appointed guardian, power of attorney, and care manager. In response to the need for accessible, accurate, reliable, and trustworthy information Pamela offers online caregiving support and programming to solve caregiving problems, advance healthcare literacy, and promote self-advocacy. She collaborates with professionals in the areas of estate planning, elder law, and probate, financial planning, and healthcare to raise awareness of and sensitivity to family caregiving and healthcare issues.
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