Did You Know That?

By Dr. Rick Caracciolo

Did you know that there is a possibility that your neighbor might be one? Your co-worker, small group leader or even your best friend could be one. In fact, there is a strong possibility that you could be one, too. We are talking about being a caregiver. A caregiver is a family member or paid helper who regularly looks after a disabled child, adult or elderly person.

The number of Americans providing unpaid care has been on the rise since 2015. The number of caregivers has risen from 43.5 million to over 53 million. This equates to some staggering statistics that will continue to rise for the next 12 years. Almost one in five (20%) are unpaid for the care they provide to an adult with a functional or health need, and these numbers do not include children under the age of 18 who need a similar type of assistance because of a disability or accident. There was over a 6% rise in the number of Americans caring for more than one person from 2015 to 2020.

At first glance, you might not find those numbers to be too taxing but think about this — the numbers are not declining but staying steady with seniors aging at the rate of 10,000 per day for the next decade. The necessity of caring for someone with dementia or Alzheimer’s disease has increased by almost 5% over the last few years. Family caregivers reported a 7% increase in having difficulty coordinating care, while over 20% report their own health as fair to poor. They also reported having at least one financial impact from being a caregiver. Over 61% of the caregivers are employed outside of the home. 

When you begin investigating all the data involving caregiving, you begin to realize caregivers are the unsung heroes of the family. In fact, many of them belong to the “sandwich generation” — when a caregiver is raising children or grandchildren at home and is also caring for an older adult such as a parent or grandparent. Many of these caregivers also have outside employment. By the year 2030, one in every five Americans will be 65 years or older. This is when the last of the Baby Boomers will have turned 65 years old.

As we age, our functioning may be diminishing due to the normal aging process. On top of that, many individuals have an illness, chronic disease, cognitive decline or injuries limiting their physical abilities. Human life expectancy is the overall health of a population. It represents the average number of years of life remaining. The average life expectancy is about 78 years, however, there is no guarantee we will live to a particular age.

While Jesus hung upon the cross, He spoke to His beloved disciple John and asked him to care for His mother. From that time on, John took Mary, the mother of Jesus into his home and cared for her. Jesus entrusted the care of His mother to John. Jesus was the eldest male child, and it was His responsibility to care for His mother. Jesus was concerned about her spiritual well-being and economic welfare. It was an honor and a responsibility for John to be asked to be the caregiver for Mary. The siblings of Jesus had not believed He was the Son of God. While He was on the cross dying for our sins, He was also providing for His mother and her earthly future. The concern Jesus showed for His mother is a vivid example to us that taking care of a parent or loved one is a tremendous responsibility and honor at the same time.

Respite Care — Caring for the Caregivers

As we travel down the path of caregiving, we will discover that the circumstances in which a caregiver must make decisions are different for each person. Being a caregiver is not an easy task. It is tiring, frustrating, demanding and just hard work. Being a caregiver is also rewarding, fulfilling, satisfying and gratifying. Caring for a parent or a loved one can be very taxing and trying for the caregiver and family.

Not everyone can be a caregiver, but we can help those who are caring for our loved ones. We might live miles away or have a job or responsibilities that do not allow us to have large chunks of free time, but the time you can give to provide the primary caregiver an opportunity to rest is best for all. If you can provide 1,2 or 4 hours one or two times a month, that will be appreciated and this gives the primary caregiver a chance to get away, relax and give the care receiver the opportunity to connect with other individuals besides the primary caregiver. If several family members or friends can provide help in this manner regularly a few times a month, the health of all involved will be improved. Regularly scheduled times allow for the primary caregiver to plan their respite time away. Regularly scheduled and maintained times help keep a positive attitude for all involved and can decrease the stress levels and it is less likely for burnout of the primary caregiver to occur.

It is important that the family get together to make decisions jointly, if possible — in person, on the phone or through a video chat. All the duties of a primary caregiver should not rest upon one individual. Many of the duties can be divided up, even if the family member does not live in the area. Some of the duties that an out-of-the-area individual might be able to do is helping pay bills online, arranging yard care or ordering groceries online and having them delivered to the house. The needs of each family are different and unique to them.

When the decision is made that a caregiver is needed for the parent or loved one, additional assistance from the family needs to be secured at that point. The sooner a schedule is made and agreed upon, all can become accustomed to caregiving on their regularly scheduled time. No matter if caregiving assistance is weekly or several times a month, it is important. Having a regularly scheduled care assistance also reminds everyone that they are needed and accountable to be involved with the care of their parent.

The time away the caregiver gets from the care receiver is called respite care. Respite care can be defined as a time for the caregiver to get a chance to renew, relax and refresh. The amount of respite time will vary with each situation. Even though it is a family member we may be caring for, we all need time away for other activities, like visiting a friend, getting coffee to going on a vacation for a few days so we can relax.

When time is not set up from the initial onset of the person needing a caregiver it becomes more difficult as time progresses to get others involved because they have become accustomed to not being needed. Remember, you cannot do it all by yourself and should not try to. When the health of the primary caregiver declines, decisions will have to be made — sometimes in an instant. When there are no additional caregivers, larger health and safety concerns come to the front. If there had been additional assistance, some difficult decisions such as admitting the care receiver to a nursing home might have been averted.

The primary caregiver should remember there is nothing wrong with getting other family involved in the care process, getting respite time and enjoying your time away guilt-free. “…Come away by yourselves to a desolate place and rest a while” (Mark 6:31). Throughout His ministry, Jesus recognized that it was beneficial to get away and take a respite break from others. Time away is your time so you can re-energize, rejuvenate and just rest up, along with time for the care receiver to connect with other family members or respite workers.

In many instances when family members are not available, respite care is not an option due to the cost. There is a respite program, Arkansas Lifespan Respite which is available for caregivers to help with the expense of respite care. The program is not age-based. A child with a disability to an elderly person who needs assistance could qualify. Whether or not there is additional family caregiving assistance, almost everyone can qualify for the respite grant. The grant is for $300 per quarter or $1,200 per year and does not have to be repaid. The free assistance is not income-based, and the qualifications are simple. The money is to be used for respite care so that the caregiver can get away for a rest break. Additional information can be found on their website: argov/arlifespanrespite or by calling Arkansas Lifespan Respite Program at (866) 801-3435.

So remember, whether you are a caregiver or a respite worker, you are important. You are the one who can make it happen in the life of the care receiver. Caregivers and respite workers, you are treasured and appreciated; you are the glue that holds everything together. Thank you.

— Dr. Rick Caracciolo has been specializing in aging issues, caregiving, assistive technology and counseling for three decades. Rick has an earned Doctorate in Ministry and he is associate pastor at Christ-Centered Fellowship Baptist Church, in Jacksonville. He works with the state respite care program and is the founder of the Aging by Design Ministry. He is the author of several books and has a passion to educate individuals, caregivers and families about aging. He recently retired as a certified occupational therapist after 30 years of working in various practice settings.