Being a Caregiver Without Losing Yourself

February 19, 2019

By: Allison Kauffman 

Being the mother of three teenage daughters is both amazing and exhausting! They are very busy with after school activities and friends and I am constantly on the go, while also working a full-time job and trying to find time to spend with my husband or just do something for myself! I am very thankful my parents are still healthy and active, so at this point in my life; I feel secure and blessed knowing they can take care of themselves.   However, they are in their mid-70’s and I know there will come a day that my sister and I will need to decide how to care for them as they age.  

One of the toughest jobs you will ever have is serving as a caregiver for a spouse, family member or friend. According to a survey by the Associated Press-NORC Center for Public Affairs Research, four in 10 Americans have provided long-term care to someone close to them. However, 40 percent of caregivers have a health problem, or are experiencing emotional, physical and/or financial strains while taking care of a loved-one full-time. And incredibly, 20-million Americans are spending 40 hours a week serving as caregivers, but doing it on nights and weekends so they can continue working a job during the day. This can lead to a variety of problems for the caregiver, who is constantly focused on caring for their loved one, and not worrying about their own needs.

This makes me think of my mother-in-law, who serves as a caregiver for a paraplegic family member living across the street from her. Often times, she is called over in the middle of the night to help our cousin with asthma related issues or other medical problems. But, my mother-in-law is retired and she tells me she can catch up on sleep when she isn’t needed to be on call. So she is relieved she still has time to rest.  
However, for many caregivers, this may is not the case. Full-time caregiving can lead to exhaustion, along with physical and emotional problems. AARP gives a list of caregiver burnout systems if you are caring for someone or know someone who may be suffering. 

They include:

  • Fatigue due to lack of sleep
  • Irritability
  • Withdrawing from friends
  • Appetite changes
  • Weight gain or weight loss
  • Drug and alcohol use
  • Difficulty coping, depression or mood swings
  • Anxiety
  • Neglecting your own physical or emotional needs
  • Lack of energy
  • A feeling of hopelessness

About ten years ago, my grandmother was diagnosed with Alzheimer’s disease. She was living alone in New Jersey, since my grandfather had passed away. When she was diagnosed, my Aunt was also living in New Jersey and was only about 30 minutes away from my grandmother. My Aunt became my grandmother’s primary caregiver, since my father lives in Minnesota. I tried to visit as often as I could, but I was raising three children and working two jobs, so this was difficult. When I could visit, I always made sure I had a chance to talk with my Aunt about how she was doing.  My aunt was focused on my grandmother and all of her needs and if I asked my Aunt something personal about herself, she would change the subject. I noticed she looked exhausted and was extremely moody.  I also noticed she would get irritated with my grandmother frequently, which was something I had never seen her do before. 

We eventually encouraged my Aunt to have my grandmother placed in a nursing care center. After doing our research, we found many caregivers feel guilty about wanting to take a break from caring for their loved one. When my father would fly in to visit my grandmother, my Aunt wouldn’t let him help with the daily caregiving tasks. She was so used to doing everything herself and was afraid to step away and let someone else help out. So when my grandmother moved to the nursing care center, the guilt got worse for my Aunt. She also had a tough time transitioning back into the life she had, prior to becoming a caregiver, which was a big adjustment for her.  When my grandmother passed away a few years ago, my Aunt took it very hard.  She had dedicated several years of her life to caring for her mother full-time, and she described it as losing not only her mother, but her sense of purpose or identity. 

According to AARP, taking on all of the responsibilities of caregiving without regular breaks or assistance will inevitably lead to burnout. They say you shouldn’t try to do it alone, but reach out for help from friends or family, community service agencies, neighbors or assistance programs. Some things that can bring relief to someone suffering from caregiver burnout include:

  • Family members being cared for temporarily while staying at rehab centers
  • Family members taking turns serving as caregivers for their loved one
  • Taking breaks to get out of the house or do something relaxing 
  • Don’t neglect yourself.  Continue your schedule of events such as doctor’s appointments and hair appointments.  Also, make sure you aren’t skipping out on meals or needed rest
  • Don’t ever be afraid to ask for help when feeling overwhelmed
  • Utilize Family Leave Benefits if you have them at your job
  • Make lists of daily activities and responsibilities to stay organized.  
  • Find a support network through a social service agency or church group

Utilize local resources such as food banks, community services, counseling, volunteer services, Area Agency on Aging and private care agencies.

Another aspect of caregiver burnout is how you handle relationships in your life. I talked about the relationship my Aunt had with my grandmother. I know she wasn’t irritated with my grandmother not being able to do things for herself. She was irritated because she was overwhelmed and stressed. Her mood swings impacted all of us because we didn’t know what to expect from her when we visited. In this situation, counseling, support groups or church organizations could have made a big difference. AgingCare.com says counseling is a necessity for caregivers. They report caring for a senior’s constant needs can cause caregivers to feel trapped in their role. That can lead to anger, resentment and depression.  The Family Caregiver Alliance estimates that nearly 20 percent of family caregivers suffer from some form of depression, anxiety or feelings of inadequacy. The National Institute of Mental Health recommends that caregivers can find someone outside of the family that they can talk with and express their feelings without judgment. They say those who receive regular emotional support are better equipped to handle difficult care decisions while balancing their own needs with those of their loved ones. 

Another recommendation for caregivers is getting their loved one involved in a day program. At Albright Care Services, the LIFE program can be a great relief for many caregivers. LIFE stands for Living Independently For Elders. Albright LIFE understands that long-term care giving can be physically and emotionally challenging for families. Our team gets to know the participants along with their families and actively involves caregivers in the care planning process. They identify together which services are best for the participant, since every situation is unique. They customize a plan to meet the family’s needs and keep them informed. Some participants just need social support, while others require daily medical observation and therapy. The goal is to find ways to make the participant’s days fulfilled and bring peace of mind to their families. You can find more information about our LIFE program at albrightcare.org. The LIFE program can take stress off of caregivers by providing transportation to and from the LIFE Center, nutritious meals, activities, medical and dental care on-site, prescriptions, and self-care, such as showers and haircuts at the LIFE Center. You can find more information about our LIFE program at https://albrightcare.org/albright-life-centers/

Getting back to my family story, my Aunt is now doing much better following the passing of my grandmother. She has a part-time job that she loves and a great group of friends that enjoy spending time together. She is proud of the time she dedicated to caring for her mom and feels good knowing she was always there for her. However, she learned a lot from the experience and told me many ideas and tips for caregiver burnout when the time arrives for me to step into that role. However, my mother lives in New Hampshire and my father lives in Minnesota. I lie awake at night sometimes thinking what I would do if something happened to either one of them. 

A 2009 National Alliance of Caregiving study found that about 15 percent of caregivers live more than an hour away. Many caregivers struggle with feelings of guilt, and those feelings are amplified by distance. Care.com came up with some tips for those who don’t live near their parents, but need to be caregivers to them.

  1. Accept- Recognize that feelings of inadequacy and guilt are normal.  Allow yourself to acknowledge these feelings so you can process them and let them go. 
  2. Reach Out- You may not be able to visit, but calling or video chatting can help alleviate guilt
  3. Redefine “Caring”- Work with your parent to identify what you can and cannot do and find ways to fill in the gaps that matter to your parents.
  4. Be Supportive- Support the primary caregiver, despite your feelings of guilt for not being able to be there
  5.  Use Supports- Contact the Area Agency on Aging closest to your parents to find out what helpful services are available, such as Meals on Wheels for meal delivery.  Find out more about Meals on Wheels at RiverWoods here: https://riverwoods.org/about-us/meals-on-wheels/

I know in my heart my parents wouldn’t want me to move closer to them just to be their caregiver. They appreciate that I have my own life in Pennsylvania. So, being prepared by researching support programs and a plan for their care in the future is the best step I can take. This is a great resource for planning ahead for the day when your parents may need you to make some important decisions: AARP Planning Guide for Families