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!
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Check out “Advice for developing a caregiving plan” in the January 2021 issue of The Beacon Newspaper:
- The Beacon Newspapers
See the DailyCaring article:
Coronavirus and Caregiver Mental Health: 8 Coping Tips
- Maintain a regular daily routine and healthy lifestyle
- Improve sleep
- Focus on what you can control and limit “what if” thinking
- Give yourself a break
- Plan for your older adult’s care in case you get sick
- Take mini breaks throughout the day
- Remember, you are not alone
- Use humor to relieve tension
Each tip contains suggestions for how to accomplish the recommendations with additional links provided.
I relate to #5 in particular. Having a contingency plan for caregiving was something we overlooked when I took on the responsibility of being a fulltime caregiver for my mother-in-law. Still in my 50’s at the onset, I was a healthy and energetic. I did not foresee how the responsibility and the stress of escalating needs would take such a toll on my physical wellbeing.
Undertaking a caregiving role is sometimes a very gradual process, but in the case of a crisis situation, it can be very sudden. In either case, caregiving responsibilities usually escalate as needs multiply over time. The less able our loved ones become, the greater their sense of independence lost. And as needs escalate, so does conflict. Caregivers sometimes begin by providing support in such areas as yard work or home repairs, followed by assistance with IADLs: telephone communication, housekeeping, laundry, food preparation, transportation, and managing medications and finances. Perhaps a greater sense of dependence involves the need for support with ADLs: bathing, dressing, grooming, ambulating, transferring, toileting, and feeding. The list of caregiving tasks grows and grows; the specifics are customized to each individual situation. When I was no longer able to care for my mother-in-law because of my knee replacement surgery, I wrote a job description for our nephew, which, in addition to the above-listed responsibilities, included the following tasks:What to Do about Mama? p. 162
*Maintain an updated medical history to take to all doctor appointments
*Maintain hearing aids; help to put them in
*Perform wound care
*Order medications, medical supplies, and equipment
*Order incontinence products
*Take to hair and nail appointments
*Provide opportunity for recreational activity
*Schedule and direct help—aides and hospice personnel
It is important not to make promises and commitments to the point that there is no way out.
Katie now resides in a nursing home. During the first half of 2013 she had surgery to have her skull reattached, and Botox injections to relax her limbs. Due to the traumatic brain injury (TBI) that caused the stroke, Katie’s left arm is tightly contracted; the left leg has dropped foot; and the right leg has become mysteriously contracted after her skull reattachment. Only her right arm functions normally. Katie has had some physical therapy, but it was discontinued due to her inability to tolerate the pain. Friends were trying to help out by stretching her limbs, but no one could stand to put her through the agony. So physically, there was very minimal improvement, at best.
Mentally, progress was more positive. Her vocabulary was good, and she was able to communicate fairly well. She did have a tendency to “confabulate” (giving fictitious accounts of past events, believing they are true, in order to cover a gap in the memory caused by a medical condition such as a brain injury). That characteristic, in addition to the extreme change in her personality, were possibly the most difficult for family and friends to adjust to.
Judene and I tried to visit Katie every week or two, and we would sometimes have get-togethers as couples for dinner and game night at the nursing home, with the hope that familiar activities would help restore some essence of her personality. And very gradually we began to see some progress—through a smile or a laugh or a demonstration of Katie’s keen wit.
Because I had been an Assessor at the Area Aging on Aging, and because I had experience with developing care plans, I began to talk to Sam about the possibility of caring for Katie at home. I told him that I had seen clients in similar conditions cared for at home. I acknowledged that providing total care is very difficult and a huge responsibility. I understood that Sam was completely over-whelmed by the concept, and basically scared silly by the idea.
But I had a plan—a real longshot—and it became a driving force for me to see if it could work…