My husband and I were caregivers for his mother for seven years when she moved from Florida to our community in Pennsylvania and later into our home. Because I had had a historically good relationship with my husband’s family, I never anticipated that caregiving would weaken the rapport we had developed for over 40+ years.
Barry Jacobs noted several ways that caregiving impacts sibling relationships, and although the specifics of our stories sometimes differ, the generalities are the same. Jacob’s observations are in black, ours are in red.
- Sibling disagreements created resentment that caused long-term damage to family relationships.
We thought we had established a cooperative plan of shared-responsibility, but two of the four siblings did not meet agreed upon expectations.
- Caregiving relationships can become strained.
Although their brotherly relationship had already declined in adulthood, with caregiving it devolved into estrangement. A good relationship with a sister also became strained to the point of estrangement, but fortunately it has been mended.
- Attitudes about level-of-care needs can differ. My husband’s brother and sister-in-law were the most insistent that their mother could no longer live independently, but it was also they who were the least-willing make sacrifices or provide care.
- Disagreements replay old childhood dynamics. Repressed childhood resentments were the root of the adult conflict that began to surface when my husband left home to go to college. The resentment became toxic decades later after their mother died and the estate was being settled.
- The dynamics created by birth order still had an impact. When growing up, there was a definite pecking order in my husband’s family based upon the siblings’ age and sex. This dynamic played out again in adulthood when my husband’s mother named him Executor of her will near the end of her life.
- Pulling together to care for a parent(s) makes some adult siblings draw closer together, but many sibling disagreements about needs and how to share responsibility create resentments that sometimes simmer, occasionally explode, and invariably cause long-term damage. As caregiving needs escalated, my husband and I called a meeting to re-clarify our expectations for all four siblings to honor their commitment. After the meeting, resentment grew, leading to family mediation, which was conducted by the hospice spiritual advisor. There was begrudging agreement and follow through until the end. But after their mother died and the estate was being settled, there were financial accusations, the repercussion of which was long-term resentment and estrangement.
Again, visit https://www.aarp.org/home-family/caregiving/info-07-2013/family-siblings-aging-parents-jacobs.html for tips about: How to Share a Caregiving Role with One or More Siblings.”
I was speaking to a neighbor the other day about her elderly mother. Mom, who is in her nineties, had been living with family for years. After a cycle of hospitalizations and rehabilitations, her caregiving needs progressed to the point that the family moved into an upscale supportive personal care facility. Shortly thereafter, when COVID-19 entered the scene, it became necessary for the facility to put visitation restrictions in place. Up until this point, Mom was cognitively intact, but due to this unforeseen development she soon went over the edge—and her cognitive abilities rapidly declined. Unable to process or cope with what has happened, she no longer recognizes anyone but her daughter.
On The Caring Generation July 22, 2020 radio program, “What Caregivers Can Learn from Isolated Seniors” Pamela D. Wilson discusses the topic of isolation as it relates to seniors and to caregivers.
Caregiver Isolation and an Isolated Seniors are two distinct situations. Although different, the caregiver can learn from the senior, and vice versa. Isolation, or being physically distanced, is called “social isolation”. The concept of being “isolated” has been brought home to all of us by the coronavirus; it is the feeling we experience when we are unable to be together with family and friends. Loneliness is different. Wilson illustrates the difference with a quote from a lonely senior: “Isolation is being by yourself. Loneliness is not liking it.”
Isolated, lonely seniors are certainly not a new or unusual problem. Caregiver isolation and loneliness is common in caregiving relationships, as well. You can learn more by visiting https://pameladwilson.com/isolated-seniors-caregiver-isolation-and-loneliness-the-caring-generation-radio-program/
But Coronavirus brings on an entirely new dynamic, and this is the focus for today.
Following are comments from a CareChat on the CareGiving.com website: http://CareGiving.com website:
How could we improve communication with family caregivers and residents in long-term care during the COVID-19 pandemic and beyond?
- “COVID-19 did not create the problems we’re seeing in long-term care; it simply exacerbated them and exposed them in the most public and tragic way.”— Star Editorial Team
- The negative impacts of isolation on the health and well being of older adults is all too common—without the added complications created by the pandemic.
- A myriad of reports and studies over the past five months have spoken about the harm caused by visitation restrictions on residents in long-term care and their families in countries across the world.
- Nothing beats face to face and voice recognition. Best I can do now is a Window visit where my Mom can see my face and with phone on speaker, can hear my voice. Current indoor visit from a distance, mask, and with me shouting at her will only increase her anxiety.
- Family caregivers need to be recognized as something other than a visitor. Our elders are declining because they feel that they have been abandoned by their families who used to be there to provide not only physical care, but emotional support.
- I hope those in the LTC sector, health care, and society at large will learn from the expertise of family caregivers, who are essential partners in care.
- Most importantly, “visitor” policies must differentiate between “family caregivers” and “general visitors”
- Mine is an umbrella “must have” that starts and ends with truly seeing the family as part of the resident. The suffering has worsened exponentially by locking out family caregivers, who were providing essential hands-on-care. They need to be let in ASAP!
- Agreed, we cannot stop advocating. This whole situation is not only heartbreaking, it is criminal. We need a province wide mandated solution
- Keep trying to amplify our voices until somebody listens before we see more deaths from isolation and loneliness.
To wrap this up, here is a vision of what Life After the Pandemic might look like. In the August 1, 2020, Kaiser Health News report Bruce Horovitz describes a post-vaccine world might look like regarding Seniors Gathering:
- Anytime COVID-like symptoms are exhibited, seniors will be forced to socially distance from large family gatherings and may not be welcomed under any circumstances.
- As older folks withdraw and isolate from family get-togethers and large gatherings, depression will increase. A disengaged older population is a bad thing as each individual problem will grow exponentially into many.
Not a bright outlook, from beginning to end., so ask yourself:
See the The Imperfect Caregiver website: for discussion and an audiobook excerpt. Love this website!
My friend suffered from a brain injury during surgery in December 2012. She was impacted physically (with the use of only 3 limbs), mentally (hard to determine since she maintains many thinking skills and abilities), and emotionally (personality has changed in significant ways). It’s confusing because despite the losses, when it comes to her mind, there is much that has been maintained. So it is particularly frustrating for her spouse when my friend expresses one particular delusion that she insists is true, when obviously to everyone else, it’s false. The delusion: she walks. I usually hear her husband say something about it is common sense she cannot walk and she should know that. My response to her is that her desire to walk, her dreams and recollections so strong, that it is easy for her to believe she walks–and then I add that I think it is delightful that she is able to enjoy that memory so realistically. I’m not sure what the experts would say about this but to me, it seems a workable compromise between the two extremes of believing and disbelieving. Read the whole story in “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank.