I cannot say this enough. No matter how much you think you are prepared, caregiving will throw you punches. A big part of your ability to handle the responsibility is having realistic expectations. I appreciate that Pamela Wilson, unlike many of those who write about caregiving, makes this perfectly clear in the January 20, 2021. Episode of The Caring Generation® “Being a Caregiver Is Not Easy”. Below is a synopsis of the podcast. Support examples from my caregiving book, What to Do about Mama? appear in red.
This episode is based on the following premises: Caregivers often describe caregiving by saying, “It’s more challenging than I ever imagined.” Being a caregiver is not easy, but neither is being the person who receives care.
“If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.”What to Do about Mama? pp. 152-153
Happy people possess qualities that help them remain positive and optimistic. Wilson highlights eight topics that delineate why caregiving is not easy and what positive people do:
The positive optimist recognizes that life consists of making hard choices. They view these problems or challenges as ways to promote growth of problem-solving skills. Caregiving entails hard choices to be made by everyone involved, including the caregiver, the person needing care, a spouse, and so on. Both caregivers and care receivers will be be making choices of varying degrees of difficulty that they would prefer not to make at all.
- Should I trade my time with friends this weekend or spend time at my parents in caregiving activities?
- Should I have my mom come and live with me of should she live in a care community?
- Should I choose chemotherapy and radiation for my cancer or opt for not receiving treatment and the alternative?
“The differences in the caregiving situations I observed were extreme, but from the best scenarios to the worst, caregiving was never easy.”What to Do about Mama? p. 155
Making difficult or hard choices becomes a way of life if you are a caregiver or an aging adult. When dealing with one problem after another, Wilson recommends preparing for “what-if” situations by creating multiple plans. Writing the problem(s) down can help with visualizing whether we are bothered by a problem or only a symptom, and whether or not the challenge even has any ideal solutions. She encourages participation in a support groups and says it is helpful to solicit opinions of how other people have handled similar situations.
“It’s helpful to hear the perspectives and suggestions of other caregivers and professional staff and to sometimes receive the ‘nudge’ needed to make difficult choices.”What to Do about Mama? p. 181
Aging in place or going to a care community is a good example of a difficult choice that entails having uncomfortable conversations about a number of multiple next-steps as potential solutions.
“People feel uncomfortable saying anything, so no one really expresses what they want or don’t want. Maybe they worry about hurting feelings; maybe it’s too emotionally painful to make difficult decisions. People think it won’t happen or want to pretend it won’t happen. They adopt the approach, “Since I don’t know what to say, I won’t say anything.”What to Do about Mama? p. 277
The second quality of a positive optimist involves interpersonal interactions and communication. How do you handle embarrassment, relating to doing something for the first time (such as assisting with toileting), and fear, relating to doing something in which you have no experience (such as wound care)? Both can be uncomfortable care situations. But these are problems that improve with “the doing”.
“Not only was it terribly disturbing to clean up (and embarrassing for her), but I was angry at another family member who just sat there and didn’t do anything— as if the problem would go away by itself.”What to Do about Mama? p. 321
“When the initial alarm sounds, caregivers are filled with worry— maybe even fear. They kick into action to find a solution that will make it “all better.” In the attempt to gain control of the situation they become the caregiver.”What to Do about Mama? p. 174
Another even trickier area of interpersonal interaction and communication comes with dealing with other family members. As a burned-out caregiver, you may feel that you can’t continue at either the current level of help that you are giving, or the amount of help that you are receiving. You need to have a family talk. Good communication skills are essential, and you can learn how to have these conversations. But does that ensure that the family members you want to talk to will have good communication skills, too?
“We made too many assumptions, and with our differing styles of communication, too many hard feelings developed at the time of our greatest need—the last two years of caregiving, when my mother-in-law’s health went into serious and rapid decline.”What to Do about Mama? p. 244
The third quality of a positive optimist is having a growth mindset. I call this a “Can Do Attitude.” This means that you believe you can succeed with time, effort, and learning. You look at challenges as opportunities. In other words, you’re persistent and don’t give up; you’re likely to listen to the suggestions of other people and say, “Yes, that might work,” as opposed to “That won’t work.” These are the folks that set goals and take action, as well as educate themselves rather than looking back, and saying, “Oh, I wish I knew then.”
“Sometimes caregivers express the feeling that they had expected caregiving to be “easy,” but they found out through the actual experience that it was truly very difficult. Through the process of “rising to the occasion,” they discovered newfound capabilities and personal growth.”What to Do about Mama? p. 242
“Problem-solving: It’s important to know how to identify a problem, consider solutions, develop a plan of action, and put that plan into practice with determination and a “can-do” attitude. If they don’t have the knowledge needed, caregivers do not hesitate to research and discover how to solve problems.”What to Do about Mama? p. 264
The fourth quality of a positive optimist is the ability of the individual to recognize the importance of making time to care for themselves physically and mentally. Too often caregivers feel that they have put their life on hold to care for their aging parents. And the fact is, they probably are, so the best that can be done is to recognize that you cannot care effectively for others if you do not care for yourself.
“Accept offers of help so that you can regularly schedule time to take care of yourself. Eat right, get rest, exercise, and see the doctor when you need to. Schedule time to nurture and recharge yourself. Enhance your inner peace through your choice of relaxing activity: read, journal, meditate, pray, listen to music, find a retreat (even if it’s just soaking in the tub). Schedule others to provide services: minimize your chores by hiring a cleaning lady; get time away by hiring a senior sitter.”What to Do about Mama? p. 180
The fifth quality of a positive optimist is the ability forgive and to move past hurt feelings—not holding grudges—leaving anger, disappointment, resentment, and thoughts of revenge behind. It’s taking responsibility for making a plan to forgive and to move beyond the sibling rivalries of childhood.
“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 percent) 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.”What to Do about Mama? pp. 188-189
The sixth quality of a positive optimist is making the effort to get sufficient sleep, the lack of which stresses your immune system, causes illness, and diminishes your mental abilities.
“Make sure that you as the caregiver get enough rest and sleep. What happens to your loved one if you also become ill? If you are having trouble getting enough rest, ask your doctor for medications that will relieve your stress or sleeping problems. I never thought I would ask for help, but this is how I made it through the rough times.”What to Do about Mama? p. 140
The seventh quality of a positive optimist is to be proactive in maintaining relationships with family and friends in order to reduce social isolation and loneliness.
“Jillian (p. 80) agrees, urging caregivers to have something fun to look forward to in their schedule—to make time for activities other than caregiving responsibilities. “Make time for yourself and do it! Maintain friendships, have someone you can talk to and share your feelings with. Laugh as often as possible.”What to Do about Mama? p. 153
The eighth quality of a positive optimist is making it a deliberate practice to create a regular routine—especially to put in practice the previous seven topics on the list
“Mom was now on oxygen full time. We started the New Year with her being homebound for six weeks due to receiving in-home services—visiting nurses and physical therapists—followed by another few weeks of waiting for the winter weather to break. New routines with oxygen and dressing assistance added up to a lot more time with hands-on caregiving.”What to Do about Mama? p. 14