Click on http://youtu.be/GfKS98UTjB4 to view a UCLA Health Webinar on “Surviving Caregiver Stress” by Linda Ercoli, PhD.
Every caregiver who watches the webinar will find something that resonates with their own unique caregiving situation.
Some of the points that resonate with me are:
- Caregiving stress is impacted by the length and the load of the caregiving experience.
I was caregiver of my mother-in-law for seven years, four in my home. The last two years were characterized by escalating physical decline in conjunction with increased caregiving needs. What had been an overall positive caregiving experience became unmanageable.
- Caregiver stress is increased when there are fewer uplifts (positive perceptions).
I had assumed my caregiving role as a means to “give back” and show my appreciation. When I sensed my mother-in-law’s air of resentment, the positive perceptions of the arrangement eroded.
- Caregiver stress is impacted by role changes.
My mother-in-law was fiercely independent. She could not accept what she perceived as a “relinquishment” of control, such as when I began to set up her medications.
- Caregiver stress is greater when there are perceived problems relating to the family, as well as the care receiver.
We called a family meeting to discuss our need for increased support relative to increasing needs. My husband’s siblings were defensive. As relationships diminished, stress increased. As noted above, when my mother-in-law felt her “autonomy” decreased, her “animosity” increased.
- Coping strategies include “doing for self” through exercise, nutrition, activities, etc.
When I took time for myself or looked for ways to meet increasing needs, I was accused of being selfish. My mother-in-law stated, “Everything is for your convenience.”
- Coping strategies include availing yourself of opportunities for respite.
When I utilized hospice respite, I was again labeled as “selfish.”
- Coping strategies include finding support.
I joined to a support group; it was instrumental to maintaining my sanity and making difficult choices.
- Coping strategies include setting limits.
When my sister-in-law said she could not have Mom for Christmas because there would be three dogs and a grandchild there, my husband told her we would have one dog and seven grandchildren—our “request” was not negotiable.
- Caregivers should be aware of escalating caregiver burden: exhaustion, medical problems, unrealistic expectations, poor relationships, the need to control an uncontrollable situation.
Providing my mother-in-law with ambulatory support became unsafe since I was now in need of bilateral knee replacements.
- Caregivers should plan and prepare to transition to other care models when the burden becomes too great.
Although she did not want to leave our home, my mother-in-law moved to her daughter’s home when I could no longer care for her safely.
In “Me and These Men” May 5, 2014, MKC posts:
There are PLENTY of ways to lose your mind once your parent has moved in—but prior planning certainly does help. I address this same topic in my book, “What to Do about Mama?” on pages 72-73 and 77-78.
Providing Care in Your Own Home
As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown?
But certainly, if this is the choice you make, be sure that you and your spouse or partner are as prepared as possible. Your home needs to be made safe and handicap accessible, with equipment such as grab bars and shower chairs. Throw rugs should be removed from walkways. It is best if you can provide one-floor living capability, which can be an extra challenge if there is no bathroom facility on that level.
Discuss how responsibilities will be divided among those living in the home, as well as those providing outside support. Don’t forget to talk about finances. Bringing your loved one into your home will put extra demands on your budget. Make sure you will have opportunities for respite and time for yourself; don’t “lose” yourself in the process of caregiving.
Most importantly, consider whether your relationship is strong enough to handle the demands of living together. If you have problems historically, they will continue or even get worse. Even if you believe you have gotten along well, be prepared; there may be some surprises you just didn’t foresee. Keep all the household members in mind—are there personality clashes? Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress?
If you opt to bring your loved one into your home, establish an open line of communication. Talk about and listen to expectations on both sides. It is so difficult to respect everyone’s roles when the parent-child lines become fuzzy. To encourage a positive and cooperative atmosphere in your home:
Designate a personal space for your loved one that is not too isolated from the rest of the household. Fill it with his or her belongings, collectibles, and mementos.
- Talk about individual routines, and try to accommodate everyone’s needs as closely as possible without compromising your household and family values. Will you have enough time for other family members? If your spouse or children are required to sacrifice what they hold dear, the household climate will become a breeding ground for resentment and conflict. Remember that family support is vital if the living arrangement is to be successful.
Emphasize household customs, and solicit support for avoiding unneeded disruptions. Will you be able to maintain important lifestyle concerns such as employment, social life, and vacation plans? Are you prepared to make adjustments?
As a family, discuss what you each value and what causes you stress.
Set boundaries in the relationship, but make sure to schedule time together.
Help the care receiver develop new activities and friendships.
Encourage mutual respect based on communicating wants and needs, not giving orders. Stress the importance of being open and honest with each other. This is particularly difficult when your care receiver goes around you to complain to the “others,” which also sets the “others” up to second guess your actions. Direct communication is the key to avoiding misunderstandings.
An AgingCare.com article “Getting Your Siblings to Help with Caregiving” by Linda Hepler, BSN, RN, stresses the importance of sharing caregiving responsibilities with siblings and makes suggestions about how to accomplish a cooperative family relationship.
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Hepler states that when an elderly parent’s health begins to fail, one adult child generally becomes the primary caregiver. And while this may work well for a time, it can eventually cause resentment when you find yourself shouldering most of the burden—especially if other siblings live nearby yet don’t help out. She then goes on to make the following recommendations:
- Call a family meeting
- Make a written agenda
- Do as much listening as talking
- Be specific about what you want
- Divide up tasks
- Don’t expect total equality
Hepler stresses that it’s normal to experience tricky dynamics when siblings get together as adults, since childhood jealousies and rivalries as well as historical grudges may resurface under the pressure to work together and make sacrifices.
Hepler recommends that if all else fails, an option for getting past stressful communication is a relatively new concept—family mediation—an informal process in which a neutral third party sits down to help people in conflict to better understand their individual interests and needs so that they can agree upon a workable solution to the problem.
Hepler emphasizes that even when successful in achieving a better distribution of responsibility, it’s important to communicate, communicate, communicate.
We have discussed the family meeting previously (See the February 22, 2014 entry: “Family Meeting”), but the concept of “shared responsibility” with siblings cannot be overstressed. It is a major concept in my book, “What to Do about Mama?” and is central to chapter 2, in which I recount my own personal caregiving story, including experiences with family meetings and family mediation. Following are some excerpts from the book, relevant to this topic:
- A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on. WTDAM p.54
- You’ve taken on the responsibility of family caregiving. You may have held a family meeting to set up a care plan. In an ideal world, all the family members would have done their best to foster a nurturing caregiving relationship among everyone involved—parent(s) and children alike. You have embraced mutual trust, respect, kindness, and patience. You have rejected guilt and resentment. You communicate effectively, based on listening to what everyone is saying. You compromise when problem-solving to find the solution that works best for everyone. You and the family have assigned tasks according to individual strengths and skills and with an awareness of individual needs. You share caregiving responsibilities, and have found that teamwork reduces tension and brings your family closer together. It even promotes the possibility of healing old wounds. You keep your expectations realistic, and your family members, in turn, provide you with needed emotional support. They allow you to vent and take steps to alleviate your stress.
How well does this describe your family’s caregiving experience? In the real world, when there’s a pressing need to collaborate and make important decisions (especially with a resistant parent), you may not all be in top form, but, rather, anxious and overwhelmed. Your relationships may be knocked off balance by the magnitude of caring for aging or failing parents. Feelings for each other shift, sometimes weakening the ties and intensifying sibling rivalries of the past. There may be jealousies related to perceived “favored children” or worries about issues of inheritance. A frequently reported caregiver frustration is the lack of consistent help from other family members; a large portion of sibling caregivers (40%) end up having serious conflicts with each other. Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down. WTDAM pp. 107-108