According to the 2015 National Alliance for Caregiving and AARP Public Policy Institute, an estimated 43.5 million American adults were unpaid caregivers and about 85 percent cared for someone related to them.
Taking care of a loved one with dementia, physical disabilities, or other age-related conditions makes demands on a person’s time, energy, and emotions — demands that, as the Cleveland Clinic warn, “can easily seem overwhelming."
In some cases, this feeling of being overwhelmed leads to caregiver stress syndrome. Caregiving stress syndrome is caused when caregivers neglect their own physical and emotional health to focus on caring for a loved one.
Numerous factors play a role in creating the stress; factors such as the constant demands of caring for a person and the changing relationship of being a loved one to that of being a caregiver.
Many place unrealistic expectations on themselves, thinking they can do it all and refusing to ask for help - often because they don’t want to burden anyone. Finally, caregivers can simply be beaten down by the emotional toll on them.
Caregiver stress syndrome is associated with numerous negative health outcomes. 40 to 70% of caregivers suffer from depression and many experience anxiety, anger and irritability. It can not only impact one's mood, but his or her long-term health and wellness. Chronic stress can lead to high blood pressure, diabetes, and a compromised immune system.
Symptoms of caregiver stress syndrome include changes in appetite, weight and sleep patterns; feelings of hopelessness, irritability and helplessness; withdrawal from friends and family; sickness; thoughts of self-harm; loss of interest in previously enjoyed activities; and emotional and physical exhaustion.
Feeling powerless is the number one contributor to burnout and depression. It’s an easy trap to fall into when you feel stuck in a role you didn’t want or that you can’t change. The good news is that you really aren’t powerless, though. While you don’t always have the extra time, money, or physical assistance you’d like, you can always focus on finding more happiness and hope. So, how can I do that, you ask?
Here are some ideas:
When faced with a loved one’s illness or the burden of caregiving, there’s often a need to make sense of the situation and ask “why me?” You can spend a large amount of energy dwelling on things you can’t change and for which there are no clear answers or you can focus on what you can do. The emotional traps of feeling sorry for yourself or searching for someone to blame is fruitless and gets you nowhere.
Acknowledge that, despite the resentments or burdens you feel, you are choosing to provide the care. Identify the positive reasons behind your choice; the deep, meaningful motivations that sustain you through difficult times.
Look for the silver lining. Think about ways that caregiving has made you stronger or how it’s brought you closer to the person you’re taking care of and to family members.
Don’t let caregiving take over your life, which can be a challenge in and of itself. Give yourself permission to invest time in things that give you meaning and purpose and make the commitment to take that time for you.
Focus on things you can control. You can’t make more hours in the day or force a relative to help. So, rather than stressing out over things you can’t control, focus on how you choose to react to problems.
Celebrate the small victories. If you feel discouraged, remind yourself that your efforts matter.
Reading about caregiver stress syndrome was an eye opener for me and explained that my feelings, as I provide care for my husband with dementia, are normal.
On one hand, I do feel resentment and I can feel sorry for myself. Caregiving is not something I ever wanted to do. It is taking over my life and I have little time and energy for me and my projects.
On the other hand, this experience has made me stronger, I do know that I am making a difference, and I do know that this is a choice I am making.
Steps to help prevent caregiver burnout include:
• Talk to someone about your feelings and frustrations.
• Set realistic goals. Accept that you may need help with caregiving, and turn to others for help with some tasks.
• Don't forget about yourself because you're too busy caring for someone else. Remember, taking care of yourself is not a luxury. It is an absolute necessity.
• Talk to a professional – a therapist, social worker or clergy member is trained to counsel individuals dealing with a wide range of physical and emotional issues.
• Know your limits and be honest about your situation. Recognize and accept your potential for burnout.
• Educate yourself. The more you know about the illness, the more effective you can be in caring for the person.
• Develop new tools for coping. Lighten up and accentuate the positive. Use humor to help deal with everyday stresses.
• Stay healthy; eat right and get plenty of exercise and sleep.
• Accept your feelings. Anger about your responsibilities or the person for whom you are caring is normal. It doesn’t mean you are a bad person or a bad caregiver.
• Join a caregiver support group. Share your feelings and experiences with others in the same situation can help you manage stress, locate helpful resources, and reduce feelings of frustration and isolation.
Self-compassion or extending compassion to yourself in instances of perceived inadequacy, failure, or general suffering is key. Kristen Neff, researcher and author, identified the following components of self-compassion as being composed of three main components – self-kindness, common humanity, and mindfulness.
But what if you are already experiencing caregiver stress, as I was. What worked for me was admitting I needed help, focusing on what I can provide, setting realistic goals, joining a support group, and self-compassion. It was important to acknowledge my need for time off and equally important to give myself permission to take it.
Yet, there are no easy answers, sometimes my ideas work and sometimes they don't. What ideas have worked for you?