Do you understand the challenges of being a caregiver? When my dad was diagnosed with Alzheimer’s disease, I had no idea what to do or what to expect as a caregiver. While he lived with us for a year, I realized I needed to learn more about what was necessary to be a kind and compassionate caregiver. It was for that reason I began to attend the annual Caregiving Conferences offered in Northern Virginia. At one of those conferences, LeAnn Thieman, who was the keynote speaker and one of the authors of Chicken Soup for the Caregiver’s Soul by J. Canfield, M. Hanson and L. Thieman, spoke of the hard work that caretakers do on a daily basis. Some sign up for this role as part of their jobs and others find themselves in that role due to family circumstances.
In 2023, it is estimated that at least 38 million people or about 11.5% of the population are unpaid caregivers taking care of elderly loved ones. That care will total nearly 36 billion hours with a value of nearly $600 billion according to AARP.
In a recent report by the Alzheimer’s Association, it is estimated that there are 15 million people caring for 6 million Alzheimer’s patients in the United States alone, and this number is estimated to grow exponentially in the next 20 years.
I find it interesting that in the 1970s and 1980s, as more women joined the work force, some companies began to offer mothers time off after giving birth and then provided day care services or flexible schedules. Now, 25-35 years later, this very same generation of men and women are faced with the challenges of being a caregiver for aging parents.
I am extremely sensitive and aware of the responsibilities and sacrifices required in caregiving because my father lived with us several times over the years, for at least a year at a time. Although I valued our time together and came to know a different man than I had grown up with, it was very challenging to balance work, the rest of our family needs, and caregiving all at the same time. I had to become resourceful and ask others for help.
The Caregiver’s Challenges
There are many aspects to caregiving that might be helpful to know about ahead of time. If you are already in this role, it might help validate what you are already experiencing emotionally and in your day-to-day experiences. It can come as a shock that there are no other alternatives to you fulfilling the majority of the caregiving role for an aging relative or friend. Initially, you can really feel grateful that you have the time to spend with your loved one, even though it is in the caregiving relationship. However, there is uncertainty about how long this responsibility will last and how much support you can find and afford. The care of an aging parent or relative may go from crisis to stabilization but, because of the life stage, it usually doesn’t get better. There are usually no happy endings. It is how we cope with this situation that offers the most opportunity for fulfillment.
Most caregivers are challenged with managing their personal lives and work responsibilities while caring for a loved one. They may need more flexibility at work so they can take their loved one to doctor’s appointments. They may need to arrive to work late because of fatigue or an emergency situation at home. Productivity can be compromised when an employee is exhausted or distracted by the responsibilities of being a caregiver. This can affect an employee’s performance evaluation and may even cause the loss of their job. These are just some of the challenges of being a caregiver.
Sometimes caregiving can create wonderful bonds between several caregivers as they team up to care for their loved one and support each other in the process. At other times, and depending on the family dynamics, it can create conflict if some family members don’t agree with how a parent or relative is being cared for or disagree with the decisions being made about care. If a parent or relative (aunt, uncle, etc.) have planned well financially, there may be no added costs to the caregiver. However, if the relative has not planned well, caregivers are often left with not only caregiving responsibilities but also additional financial responsibilities for the family member’s needs.
Caregivers often neglect their own health and self-care practices as they nurse their loved ones. This is especially true when there aren’t enough financial resources or emotional support from other family members.
It is natural to forget about ourselves as we become overwhelmed with all these new responsibilities. I remember feeling overwhelmed at times, but the support system that I created gently reminded me of how important self-care is. Taking breaks, watching a funny movie, eating well and getting enough sleep helped me get through the difficult times.
Finally, caregiving of an aging parent or relative naturally puts us face-to-face with our own mortality, raises questions, and creates anxiety about our own aging process. How gracefully will I age? Who will take care of me? Will I have enough money and resources for my care? I always encourage the clients I work with to consider having long-term health care to avoid the kind of situation that happens all too frequently in families—where the cost of care exceeds available resources.
If you need to discuss the challenges of being a caregiver, I’m here to help. Read “Be prepared to care for elderly parents” as a quick-start guide.
References
• AARP and unpaid caregiving
• Alzheimer’s Association facts and figures www.alz.org/alzheimers-dementia/facts-figures