David Bass, PhD is the Senior Vice President for Research & Education at Benjamin Rose Institute on Aging.
You have a job and a family to manage, or one or the other. Either way, your time is at a premium. Add to that the emotional and practical tolls that come with being the main caregiver to an older loved one with a sudden illness or long-term condition, such as dementia. It’s not surprising that you may feel overwhelmed. If this describes your circumstances, take comfort in the knowledge that you are not alone. With the right resources, your experience can become more positive, and may even be filled with unexpected rewards.
Although many of us rely on professionals and paid helpers to assist us in caregiving, the lion’s share of the responsibility often falls on family. Family members and friends provide an average of 80% of the help needed by older adults who are unable to independently complete all their daily activities due to an illness or disability (Feinberg L, Reinhard SC, Houser A, Choula R. National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press). Whether you are the primary caregiver, or are teaming up with others to provide support, you may be helping with:
- Personal care
- Housekeeping
- Handling legal or financial issues
- Buying groceries and other items or running errands
- Making appointments and accompanying your loved one to them
- Providing emotional support
- Simply being there so that your loved one is not alone
- Planning for care
Your loved one’s network of support may include all types of close and distant relatives, friends, neighbors and members of your faith community, so if you are the main caregiver, it can require a special effort for you and your family member to effectively coordinate help from all of these various people. You may need to come to an agreement on care and plans, and how to effectively share information. Discussing issues with these helpers, either face-to-face or via periodic phone group meetings, can be a great way to make sure you’re all on the same page. Adding a professional or outsider as a facilitator to your loved one’s care can also be useful if there are many different points of view, or if you are experiencing any tension or conflict among your family members and/or friends.
Whether you are the only person providing care, or there are other involved family members and friends, the strain of managing health problems or disabilities can affect you and your loved one.
The caregiving experience can be a mixed bag. Emotions may run the gamut from highs to lows. Caregiving can affect you in both positive and negative ways, or a combination of both, depending on whether:
- You are helping someone out of love and devotion, or a feeling of obligation
- You have a desire to give back to the person who cared for you in the past
- You have a good relationship with the person you care for
- You have help or not
Positive effects of the caregiving experience may include:
- Feeling grateful or honored to be able to help
- Gaining a closer relationship with the person you are helping
- Learning new skills and ways of coping (Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008;108(9 Suppl):23–27.)
Negative effects such as feeling sad or blue are more common when:
- You are responsible for all the caregiving
- You also have to work or care for other family members
- The situation requires more hours and/or more intense help
- A loved one has a condition that causes dementia or behaviors that can be trying
- There are unexpected changes or complications to a loved one’s illness or disability (Feinberg, et al).
You don’t have to go it alone in dealing with the more challenging aspects of caregiving. A multitude of resources exist to offer a helping hand, which may enable you to focus more on the positive aspects of caring for your loved one, such as sharing close, quality time. Consider exploring services for older adults in your area which support caregivers, contacting your local Area Agency on Aging about respite care programs or looking into caregiver coaching services such as Benjamin Rose Institute on Aging’s BRI Care Consultation™ program for further support.
