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
I read with interest the November 21, 2020, Caregiver Space article, “How to Have a Difficult Conversation,” by Adar Cohen (Edited by Lucy Foulkes).
Family communications was a frequently addressed topic addressed in What to do About Mama? (Barbara G. Matthews and Barbara Trainin Blank). It was difficult in my own caregiving experience, as well as in many of the other caregivers who made contributions to the book.
“Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs.”What to Do about Mama? p. 152
The article suggests that avoiding difficult conversations only fosters more conflict, and that caregivers should aim for a shared understanding. A synopsis of the article follows, interspersed with relevant excerpts from What to Do about Mama?
“It is optimal for everyone involved to get together to talk openly, to listen, to divide responsibility, to compromise, and to commit. And, in some families, this truly does happen. But a more frequent scenario is that as a need arises someone steps in to meet that need (often the one who has “always” provided support), and the others take a back seat or hands-off approach.”What to Do about Mama? p. 154
When Mediators help people have difficult conversations, they aim for one of three outcomes:
- A solution: a grand bargain, a resounding win, a comprehensive solution expected to withstand the pressures of future challenges.
- A plan: more realistic; like a map for finding a solution; open-ended but with a path forward; establishes new boundaries, revised norms, and shared expectations.
- An understanding: the most realistic outcome, especially at the beginning, is to focus on reaching an understanding; a new awareness of the other person’s experience; a mutual appreciation for one another’s needs; can lay a foundation for a plan, a solution and a new relationship.
“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—or whether you place equal weight on both. Establish common goals. Divide responsibility based on the strengths and abilities each of you brings to the family.”What to Do about Mama? p. 155
The following techniques from an expert mediator are guides to help you do this without the mediator. It is a way to create the conditions in which people feel heard and acknowledged.
- Prepare for the conversation: imagine you just finished having the best possible conversation where each of your concerns was addressed to your satisfaction.
- Dig out a gem: What would you say to them in this moment? Your statement should be an authentic expression of how you’re feeling but should also have significant meaning and positive impact for the other person.
- Ask yourself if you’re ready: Are you willing to risk make the statement? Although making a gem statement can create temporary discomfort, benefits are lasting and profound.
- Phone a friend and tell them the following four sentences:
#1 The biggest emotion that I’m feeling toward the person I need to have a difficult conversation with is…
#2 The biggest emotion that I expect the person is feeling toward me is…
#3 The gem statement I will make to them is…
#4 My hope for the conversation is…
- Start the conversation (in person, by phone, or by video) by stating your gem, immediately followed by: “I say this because I think if we both really try, we can work this out.”
- Listen and talk. Remember your purpose. Try to achieve understanding, even if it falls short of a solution. Remember that just as you need to be heard, your counterpart needs to be heard too.
*Minimize arguments, foster empathy, describe your experiences and emotions, do not list your
counterpart’s mistakes and faults.
*Filter your grievances: Stick to your top three grievances so as not to tax your counterpart’s ability to
absorb and respond to critique.
*Look back at the fill-in-the-blank sentences you read to your friend and see if there’s anything more or different you’d like to share.
- Close the conversation. Ask one another to identify what has changed as a result of this conversation. Remember that your goal is to understand each other.
“What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions.”What to Do about Mama? p. 16
I think it is important to note that despite all your best efforts, you cannot always orchestrate the outcomes you wish for. You make your own choices–you cannot control those made by others. In my own caregiving situation, we enlisted the support of a mediator, which helped to achieve current goals.
“If you do not want to handle the caregiving responsibility alone, and if the family cannot come together in agreement, you may need to seek professional intervention.”What to Do about Mama? p. 158
However, sometimes you’re caught in a recurring family pattern that causes pain and drives you away from the people you have loved. Once again, you may come to the point where you have to make choices—even if they are disappointing.
“What if family mediation is, once again, an unsuccessful endeavor? There could be healing someday if you and your siblings find your way to let go of grudges. But you may also have to learn to accept that sometimes relationships are broken beyond repair, and it’s just not your job to fix them. Whereas childhood relationships with brothers and sisters are involuntary, maintaining them in adulthood is not. We are entitled to choose ‘not’.” 194What to Do about Mama? p. 194
See the Cargiving.Com article “The Decisions Caregivers Face During COVID-19” in which Denise reiterates a number of the points I have been making in in the past few weeks, as well as in an old posts from 2014. https://www.caregiving.com/2020/04/the-decisions-caregivers-face-during-covid-19/
Because of the Coronavirus, Denise had a discussion with her parents in March to assess their wishes for treatment. They decided that being cared for at home was the safest course of action. However, in April, Dad vacillated and said, “I don’t want to be put on a ventilator.” Denise had not considered that Dad, who always wanted to stay at home with Mom and not go to the hospital, would feel differently about Coronavirus because of the contagion factor and his concern about giving it to Mom. Denise concluded that it’s best to talk and to be prepared. Nothing is certain, except that things will change. Care plans will need to be tweaked and altered, but that’s okay. What is not okay is the paralysis of indecision and procrastination.
- Caregiving contingencies
- Thoughts about Denial
- The “We don’t need it yet” phenomenon
- The Conversation Project
Have those difficult discussions. Do it now.
For me, writing a book is an all-consuming process. After What to Do about Mama? was published in November 2013, I tended to refer to “my book” a lot in family conversations. My three adult children, who I encouraged to read the book, tended to tire of the topic. As my oldest daughter explained, “We don’t need it yet.”
There are four sets of grandparents in our family group. But, by the end of 2018, two of my “counterpart” grandmas had passed away. Life comes at you fast. Suddenly the kids realized they did indeed need the book. But at that point, as is typical in these situations, who had the time?
An article on caring.com, “Starting-the-conversation” discusses how to broach difficult subjects with aging parents. https://www.caring.com/caregivers/starting-the-conversation/
But how do you broach difficult subjects with your children, or maybe more
specifically, your children-in-law? My son-in-law’s (SIL) parents were both diagnosed with cancer in the span of a year. Seeing a need, and knowing that I had some useful information, I simply offered SIL a printout of The Conversation Project: https://www.theconversationproject.org/
Glancing at it, but not actually reading it, he noted language that brought
to mind difficult topics he did not want to acknowledge. In his denial, he charged me with being “insensitive” and he did not consider using the resource.
Clearly, my approach did not work well; unfortunately, it caused a shift in
our relationship; and sadly, within his family, some important information was not shared.
It is my impression that when it comes to caregiving, people often fall into
one of three categories:
- Pre-caregiving—“We don’t need it yet.”
- Current caregiving—“Who has the time?”
- Post-caregiving—“I just want to put it all behind me.”
The result? The cycle of “caregiving-in-crisis” continues.
Check out one of my previous posts on this topic: https://bgmatthewsblog.wordpress.com/2014/02/11/the-conversation-project/