Impact of Dementia on the Caregiver: The 3 “R’s” of Support (Family)

By Pamela D. Wilson, CSA, MS, BS/BA, CG

“If only someone else could walk in my shoes and experience what it takes to care for a loved one with dementia. Sometimes I feel like I’m going crazy.”

Trying to maintain a normal life is relative when one cares for a person with dementia. “Normal” in dementia may seem to others like living in a state of altered reality. Behaviors resulting from dementia that include paranoia, repetitive actions and statements, aggression, and total disbelief that anything is wrong are challenging and one of the more common causes of stress for caregivers.

Family members become frustrated and do not know how to respond when mom or dad pleads, “take me home (from a care community)”, “I’ll do better (don’t move me), I’m a good driver (after multiple car accidents) and the most repeated statement, “I can take care of myself” (when the house floods, food is burned on the stove, a fall occurs, or the parent becomes lost).

What is the solution for caregivers thrust into a role for which there is little education? What strategies or plans exist for caregivers of a loved one diagnosed with dementia? Check out the 3 “R’s” of support to recharge your energy and attitude and help you respond to even the most challenging days when you wish you could escape for a few hours or a few days.

Maintaining composure and a positive attitude in the role of a caregiver is challenging especially as caregivers reach the state of burnout. Below are three “R’s” to offer a mental or energetic recharge for caregivers.

• Redirect. Repetitive questions and statements quickly raise the temperature of a care situation to a boiling point and result in the caregiver losing patience. It is common for individuals with advanced dementia to repeat questions, statements, and behaviors while having no insight regarding the level of repetition or the effect on others. For example, a person with dementia may ask the same question 10 times in the span of a single minute. Another person may pace through the house, rarely sitting down.
  • In these situations, redirecting the conversation by using the subject mentioned, by changing the subject, by initiating a new conversation, or by physically redirecting the loved one to another activity is beneficial. For example, a loved one may ask “what time is it?” The caregiver might say “it’s time to take a walk, eat dinner etc.” Activities that redirect conversations are also positive, “let’s bake cookies, read the newspaper, or fold towels.”
  • There are times when boredom results in repetitive or negative behaviors. A person with dementia can be very child-like and benefit from direction and participation in activities. If you are a parent you remember the old “I’m bored,” from your children who were behaving badly, understand that loved ones with dementia also benefit from activity.
• Respite. Caregivers benefit from periods of respite, of taking a get-a-way break, even if only for a few hours. Ask a family member or friend to sit with your loved one. Hire a companion care agency to sit with your loved one and give you time away from caregiving one or more days of the week. Important: you must leave the house or the location where care is provided to receive the full benefit of respite. Disappear for a few hours!
  • Caregivers experience a high degree of relationship deprivation, loneliness, and depression. Let someone else care for your loved one while you take a mental or physical break. Do something nice for yourself. Go to the library, see a movie, have lunch with a friend, go to the gym, work on a hobby. Taking a mental and physical break will help you regain composure and learn that your role as a caregiver is part of a different reality.
  • Life outside of caregiving exists and it is important for you to see and experience interactions with your friends, with new people and to participate in activities to recharge your body, mind, and soul. If you are the main caregiver for a loved one, it is critical that you care for yourself. If something happens to you, who will care for your loved one?
• Recharge and regain a new perspective. Caregivers believe they are indispensable, become angry or impatient with loved ones, ignite family or sibling disagreements, support unhealthy caregiver – care receiver relationships, lose their identity, and miss all that the world outside of caregiving offers. Invest time and effort in talking and interacting with others who can help you recharge, regain perspective and see that life does exist outside of a caregiving situation.
  • Isolation and loneliness kill caregivers. Many caregivers suffer from an equal amount of physical and mental disability as the persons for whom they care.
  • Join a caregiver support group, make a weekly counseling appointment, join a social group. Become involved in an activity that benefits YOU. Caregivers too often allow their worlds to become framed by the four walls in which they and the care recipient live.
  • Caregivers experience cabin fever and compassion fatigue. Caregivers want to break free, yet feel guilty about the thought of taking time away from caregiving. Many caregivers feel guilty. As a caregiver, it is critical not to lose your friendships, outside relationships, interests, and participation in activities. I know—easier said than done! Set firm boundaries and do not give up your life for the role of caregiving. Your physical and mental health depends on your ability to maintain a caregiving and other life balance.

The impact of caring for a loved one with dementia changes lives. While dedicated caregivers say they would not take another path, the 3 “R’s” of redirecting, respite, and recharging will help support a perspective about the role of caregiving and the caregiver’s responsibility to maintain a life outside of caregiving. It is critical for caregivers to protect their physical and mental health and general well-being.

©2017 Pamela D. Wilson. All Rights Reserved.

 

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