Most caregivers, I think, enter into caregiving with good intentions, but that is no guarantee that the endeavor will end well. Caregivers sometimes sacrifice their careers, income, marriages, friendships, and health. Oftentimes they find themselves stuck and thinking they have reached a point where they can no longer care for elderly parents.
In her July 7, 2021, podcast: When You Can No Longer Care for Elderly Parents-The Caring Generation®, Pamela Wilson discusses seven ways to disentangle yourself from caregiving.
But what really hooked me on the podcast was information shared by Pamela’s guest, Dr. Ingrid Bacon, a mental health therapist, researcher, and educator at Kingston and St. George’s University of London.
Now, I have given a lot of thought to my past caregiving experience. So much so that I wrote What to Do about Mama? which was, I think, a way of processing the ups and downs of that experience.
But when I listened to Dr. Bacon speak about the tendency for caregivers to excessively meet the needs of others—to the expense of their own needs—I found myself looking at my own experience from a new and different perspective.
Bacon noted that some family caregivers exhibit an injury pattern of extreme emotional, relational, and occupational imbalance—problems linked to their formative childhood experiences. The caregiver’s need for growth, self-development, validation, safety, or belonging, for example, can result in an over adaptation to the needs of others. Subsequently, these self-sacrificing behaviors lead to a suppression of their own needs and emotions, and a dynamic of interpersonal control. All combined, these factors create conflict that is detrimental to the whole caregiving process.
This process was complicated in my personal caregiving situation by the fact that I was not a daughter, but a daughter-in-law. I did not grow up in the same environment as had my husband and his siblings.
Circumstances of my childhood were such that my basic need for safety, stability, nurturing, and acceptance were not adequately met. Although I know that my involvement with my husband’s family from the age of 18 was largely based on my need to be a part of a (safe, stable, nurturing and accepting) family, I realize now that they probably did not know the extent to which they filled that need.
Because I wanted to express my “thanks” for being a part of this family for 40 years, I sacrificed a lot to care for my mother-in-law—with the expectation that my brother and sisters-in-law would be making like-sacrifices. Through over-adapting, I became almost imprisoned in the role; entangled in excessive doing and caring to the point of burnout.
The results were not pretty. During the last of 7 years of caregiving, I detached emotionally from my mother-in-law and my relationship with my siblings-in-law devolved from being historically good to one that is now nearly non-existent.
“Where do we go from here? Well, I really don’t know, but I do know it will depend on the kind of relationship my husband wants with his family, my gentle urging, and his siblings’ receptiveness and response. David has never been proactive in maintaining relationships. The frequent interaction we had with his family once his mother moved north all revolved around her. I don’t know if the current lack of interaction is a matter of returning to the old status quo or if it is about hurt. They have now “all moved on” in their best “we don’t talk about it” fashion. Time will tell if the moving on will include us, or not. This is not the way I would handle it, but really, this is not about me.”What to Do about Mama? p. 40
It has been ten years since my mother-in-law passed away. I cannot comment on the relationships my husband’s siblings have with each other, but as far as my husband and I are concerned, the process of their “moving on” makes me question if our once-warm bond was nothing more than a figment of my imagination.
Pamela Wilson’s Seven Steps to disentangle yourself from caregiving
- Decide and commit to changing the situation mentally—in your mind.
- Create a family care plan to present and discuss with your parents and the family.
- Be open to learning.
- Be honest and transparent.
- Hold a family meeting to announce your decision to decrease, modify, or end caregiving responsibilities.
- Support two-way conversations with siblings, parents, and others who want to discuss the plan.
- Commit to regaining your sense of self–to identify what you value and what you want and need from life.
Thoughts for consideration
Do not buy into faulty beliefs:
- Denial: Assuming that children will care for their parents or that parents will never get sick or need care.
- Avoidance: Not preparing ahead of time by initiating caregiving conversations before a “crisis situation” develops.
- Control: Taking over because you think it’s easier or faster to take charge.
To move forward when you realize you cannot live like this anymore:
- Prepare mentally.
- Research information.
- Contemplate your situation—think ahead.
- Commit to change.
- Offer options
- Be honest and transparent about escalating needs.
- Recognize that others may fear change, and therefore, resist.
- Ask siblings how they want to participate to implement needed changes.
- Set a realistic timeline, then move ahead.
- Be prepared for conflict. Guilty feelings foster defensiveness. Remain calm and listen without justifying your need to regain independence and tp live in peace.
- Solicit outside help to navigate family conflict.
- You are not a “quitter”. Do not fall back into a pattern of fear and self-doubt.
There is life after caregiving!
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
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.
In response to Joy Johnson’s post (See below): 5 required skills for the toughest job in the world / LinkedIn
I was primary caregiver for my mother-in-law. After my responsibility ended, I wrote a book about caregiving: “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank. As stated in Chapter Ten:
We are addressing here the characteristics and abilities of a good caregiver, under the premise that if you are a caregiver, these are qualities you may well already embody. And, if indeed, you feel you are lacking in some of them, we recommend that you work on developing them. They are attributes that not only facilitate performing your caregiving responsibilities but also can potentially enrich all your relationships.
1. Love, care, and compassion: First of all, and perhaps most importantly, caregivers have the ability to love, to care, and to have compassion. If you lacked these qualities, you probably wouldn’t be in the position of caregiving.
2. Commitment to family: Beyond the ability to love, caregivers have a strong commitment to family—and that family may include not only the nuclear family, but also extended family and in-laws.
3. 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.
4. Application of knowledge and skills: Caregivers often have a good base of knowledge from their professional or volunteer experiences in various caregiving or human services fields. Caregivers use what they know or learn to be better caregivers. They secure needed goods and services and advocate with healthcare professionals and institutions.
5. Strong work ethic: Caregivers wear many hats in executing their caregiving duties. They accomplish this vast array of tasks by being focused, consistent, and willing to carry through with their commitments.
6. Understand how much they can handle. Look beyond the current situation and anticipate how the demands of caregiving will increase as the care receiver becomes more debilitated. Make sure you consider your ability to handle future burdens. Caregivers must know how to set boundaries and request support whenever they find they are unable to deal with a situation or challenge on their own.
7. Effective communication. Caregivers communicate honestly and openly with all who are involved in the caregiving arrangement.
8. Ability to empower and facilitate. Caregivers respect the care receiver’s abilities and encourage independence. They provide the support needed for the care receiver to participate in life activities as fully as possible.
I’ve been writing some articles on the LinkedIn platform. When I was brainstorming content ideas, it struck me how many common workplace skills are needed when serving as a family caregiver. Of course, there are many more new skills that you will be required to learn on the fly! In my LinkedIn piece, I highlight five skills I found invaluable while serving as a family caregiver and patient advocate.
You can check out my piece here:
What skills do you find most helpful as you carry out your caregiving duties? What new skills were the most difficult to learn in order to be a successful caregiver?
So, why did I write a book about caregiving?
First of all, I worked for the Area Agency on Aging for over four years; it was my job to visit seniors in their homes in order to administer comprehensive assessments to determine their needs and eligibility for services. I saw firsthand the challenges for seniors and their caregivers.
Secondly, I was a caregiver for seven years. During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent-living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.
- Thirdly, I became active in a caregiver’s support group run by a local hospice. One of the group leaders suggested to me that I keep a journal. I also had a lot of e-mailed letters that my husband and I wrote to his siblings when we were trying to deal with the escalating needs of our caregiving situation. In addition, I was interviewed for a magazine article about support groups. After that process I thought, “I have all this stuff; what can I do with it?” I spoke to the author of the article, who was involved in her own challenging caregiving situation, and asked if she would be interested in co-authoring a book.
- And mostly, I wanted to make a positive out of something that had turned negative.
How long did it take to write the book and get it published?
- 6 months gathering information from questionnaire
- 6 months writing
- Submission and waiting
- Accepted and waiting
- Editing and waiting
- Proofing and waiting
- Published November 25, 2013
- More waiting
- Setting up social media
- Writing on social media
- And waiting
- Book events
- And waiting
What am I waiting for?
- Communication in general
ISN’T THAT WHAT BOOKS AND BLOGS ARE ALL ABOUT?
My blogging formula:
- Visit other caregiving sites
- Make comments about blog contents
- Discuss the information on my site
- Cross reference excerpts from “What to Do about Mama?
Thank you to the 20 of you who are following my blog (as of today). Since “everyone is a potential caregiver” I hope the information is useful to you.
For those whose caregiving sites I follow: Aging Parents: Making the Transition from Child to Caretaker; An Only Child’s Journey into Parent Care; Help! Aging Parents; Cape Cod Caregiver; Dog Tales; Mom & Dad Care; The Selfish Caregiver; I hope that my comments and sharing bring more activity to your sites.
Maybe at some time you will be moved to comment on mine. I would enjoy and appreciate your perspectives and suggestions.
Since caregiving is such a universal concern, I wonder, “What is holding everyone back?”
- Maybe caregiving is a topic non-caregivers avoid thinking about because “they don’t need it yet.”
- Maybe current caregivers are just too busy.
- Maybe the topic of caregiving is too gut-wrenching for former caregivers.
So in the meantime I wait
- For comments
- For something to happen
- For the time I can move on in my life