Caregivers in Mid-Life:

Feeling Isolated and Lonely and Options for Staying Well

by Katlyn Blackstone, MS, LSW | Chief Program Officer at SMAA

Caregiving in mid-life presents its unique challenges. Here we discuss the impact of caregiving on the caregiver, the importance of the caregiver's self-care, and different ways a caregiver can maintain sense of normalcy while still taking care of their loved one.

The Importance of Caregiver Health

Last year at age 53 Janet felt like she had found her very own sweet spot. At this point in her life, her career and her wife were her main sources of joy and top priorities. Janet was able to spend long yet satisfying days at her job and relaxing weekends at their cottage close to the ocean. Earlier this year, Janet’s mom was diagnosed with an aggressive form of early stage dementia. Being an only child, Janet is now the primary caregiver for her mother who has become increasingly confused. Janet now spends her weekends looking after her mom and her myriad needs. She has been forced to reduce her work hours to part-time in order to manage her mom’s medical appointments, grocery shopping, homemaking and other care needs. While Janet loves her mother and wants only the best care for her, she is finding herself feeling increasingly lost as her new life includes less balance and an increasing need to stay with her mother who can only be left alone for short periods of time. Janet is not alone in her struggles as a family caregiver. Statistics tell us that between 40% and 70% of family caregivers experience symptoms of clinical depression which can often be caused by feelings of loneliness and isolation associated with the caregiving experience. This can be a very difficult time for those caregivers who experience these feelings of isolation.

Caregiver Loneliness and Isolation. What are the Causes?

For caregivers like Janet, feelings of isolation and loneliness can be caused by a shift away from previous habits and lifestyle. Some caregivers feel alone in their caregiving duties as their friends continue on with their daily routines, often leaving caregivers out of their plans as they assume they are too busy. Likewise, caregivers without support from other caregivers in similar situations may feel as though no one really understands what they are going through. This can lead to a withdrawal from social activities and relationships that they previously enjoyed. Some caregivers may also find that they are literally facing isolation. For instance, some people may be providing care on a 24/7 basis, and feel unable to leave their care recipient. Time for personal rejuvenation is greatly reduced as they find themselves focusing almost solely on their care recipient – spending time away from home only for doctor visits or weekly runs to the grocery store. The lack of social interaction with friends and stimulation from individuals other than their care recipient, especially when dementia is present, can be a trigger for intense feelings of loneliness.

What are the Impacts of Caregiver Loneliness and Isolation?

Although feeling alone in your struggles as a caregiver will have obvious negative emotional impacts, there can also be unexpected physical side effects caused by the onset of depression. Caregivers report weight loss from lack of appetite or weight gain due to emotional over eating and increased blood pressure caused by stress―both of which can contribute to complications such as diabetes. Although not all caregivers will experience such serious physical and emotional effects caused by isolation and/or loneliness, even the slightest feeling of being alone in your journey as a caregiver can have a significant impact on your overall well-being, making you less able to focus on work, family, downtime and responsibilities outside of your care recipient’s needs.

Strategies for Staying Well 

One of the best ways to combat isolation and loneliness is to build some time into your caregiving routine to focus on yourself. While this may sound like a fantasy to caregivers who are already strapped for time, there are some ways to help re-connect to the people and activities that help restore your sense of connection and contentment:

• Respite Care: Periods of respite care can allow a caregiver to focus on their own personal needs without worrying about the safety of their care recipient. Respite services are typically available from Adult Day Services and home care agencies. In addition, you may find that friends and family are able to assist you in caregiving duties from time to time, allowing you the time to focus on your own well-being. Asking for help is an important step and you may find that your friends are more than willing to assist you in this effort.
• Finding Support While your friends may not seem to understand what you’re going through, there are others in similar situations feeling the same way. Local support groups, in person or online, may help you find common ground among caregivers in similar situations and offer a feeling of community in the midst of your isolation.
• Maintaining Your Sense of Self : Use the time that you do have for yourself to participate in whatever activities allow you to feel renewed. Whether you enjoy yoga, hiking, walks on the beach, a nap, or a movie and dinner at home with your family, involvement in your own interests can help you feel connected to your sense of self and help keep you in touch with your friends and loved ones. Even if they don’t completely understand what you’re going through, you may find that these individuals offer support in a different way.

Feelings of loneliness and isolation are issues that most people will face to some degree during their journeys as caregivers. However, caregivers should not feel reluctant to reach out for more support. There are professionals that can help by providing Options Counseling which is an interactive, decision-support process whereby individuals are supported as they seek to understand long-term support choices in the context of their own preferences, strengths and values. The process involves developing action steps toward a goal or a long term services and support plan.  It also includes follow-up with the individual.  Options counseling is available to all persons regardless of their income or financial assets.

Reaching Out

If you are a caregiver and are feeling overwhelmed by the responsibility please consider contacting the Southern Maine Agency on Aging (SMAA) at 207 396-6500 to connect with a Family Caregiver Support Specialist. In addition to Options Counseling, SMAA also offers respite funding to eligible individuals, Adult Day Services at the Sam L. Cohen Center, Savvy Caregiver classes and support groups. We look forward to hearing from you.