As I began to glance at Pamela Wilson’s Sep 22, 2021 Podcast: Hard Truths About Caring for Aging Parents – The Caring Generation® the hard truths started jumping out at me right and left. I had learned about many of those hard truths the hard way—by first-hand experience
Hard Truths About Caring for Aging Parents – The Caring Generation® (pameladwilson.com)
In this blog post, I will identify some of those hard truths and then share how they impacted my own caregiving experience and how I anticipate they will impact me and my family in the future.
- Decide how much interaction you want with your parents throughout your life. The decision to remain living in the same town as your parents or move away affects caregiving responsibilities later in life.
This decision is not always yours to make. Both my mother and my husband’s parents chose to move away from us when they retired to Florida. My mother and my father-in-law both died suddenly; there caregiving needs were never very great. My mother-in-law, however, had a goal of living to 100 and did her best to accomplish that goal, despite having a number of serious health conditions. When she became unsafe living on her own, she moved closer to us. My son and two daughters were all married with families, but they always found time to be supportive of their grandmother. When her caregiving needs became much greater, she moved into our home with me as her primary caregiver. My children continued to be supportive. (My mother-in-law died just short of 90.).
Although my husband chose not to move away from our children, our older daughter and her spouse decided to relocate from our hometown when their kids were old enough that they no longer needed as much family support. Since then, she made it clear she does not intend to be a caregiver. Her younger sister thanked me for being such a good example when I cared for her grandmother. I certainly encourage the children to be supportive of each other when the time comes that we may need some help.
- Be aware that life cycle transitions affect the timing and care of aging parents. Few children expect to spend their retirement years caring for aging parents. Still, many retired adults become caregivers—if not for a spouse, then first for aging parents. Caregiving responsibilities often pass from one generation to the next. Although some families may believe in the responsibility to care for aging parents—is there another way to make sure parents receive care and you are not the only caregiver? There isn’t one right or wrong way, but one solution is for families to think about caregiving differently, from a whole-family perspective that take lifecycles into account: having and raising children, caring for aging parents, caring for a spouse, and caring for the caregiver.
- Family culture has a strong impact on how families handle the issue of caregiving. Is the family individualistic, believing in self-sufficiency or collectivist, setting aside individual achievement to work toward the good of all in the family? Does the family talk openly about the unpleasant realities of life and death? Some elderly parents may refuse to talk about legal planning or burial plans, whereas some adult children find talking about the death of a parent too emotionally traumatic. A family generally benefits if they can discuss sensitive topics openly as a recurring topic instead of a subject of hesitation and disagreement.
This was one of the biggest challenges when I was my mother-in-law’s caregiver. As one sister stated, “We never talked about anything. We just moved on.” When we came to the point that I was coming to a point of resentment because of their comfort with my assuming the role, which diminished their need for sacrifice, I forced the issue by insisting on a family meeting and requesting greater shared responsibility. Although that eventually led to more involvement, it also led to hard feelings that still exist ten years after my mother-in-law passed away. Setting boundary lines increased their participation and helped rid me of resentment, but I also think that it increased theirs—but there are times that difficult decisions must be made in order to avoid even greater consequences.
- Caregiving and care costs affect family income. It’s important to have conversations about the cost of caregiving ahead of time. Potential caregivers need to consider how it will impact their educations and careers. If you don’t talk about caregiving ahead of time, you will find yourself learning after you are embroiled in the role. Often families move in together to provide care for an aging parent with the thought of saving money. Too frequently, however, when a son or daughter gives up their job to be a caregiver, they become financially strapped. Sometimes caregiving appears to be an opportunity to escape from a job or a boss you hate.
Because I quit my job when my mother-in-law moved into our home, she paid the mortgage (equitable to the cost of her apartment in the independent senior living facility where she had been living) because that is what my salary had covered previously. She also named my husband as her life insurance beneficiary to compensate for the loss of social security and pension monies from my early retirement. Although my husband’s siblings had agreed to the arrangement ahead of time, it did not seem to settle well with them when the estate was settled.
- Caregivers often give up or trading parts of their lives to care for aging parents. Should you? For how long? The cost is great when you were the only person to step up.
Today, as I age and my health declines, I often feel that I squandered the last best years of my life as my mother-in-law’s caregiver. At those points my counterpart sister-in-law’s comment comes to mind: “My priority is my children. I am only a daughter-in-law.” What to Do about Mama? p. 20
- A lack of planning affects family relationships. When there is no planning because the topic of caring for aging parents is something no one wants to talk about, unpleasant and unwanted decisions are not avoided. Caregiving becomes a process of action and reaction that elicit a response only when serious concerns are manifested, or a crisis moment occurs. Ripple effects are then created that affect every generation in the family.
A few years ago, both my daughter-in-law and my son-in-law’ mothers were diagnosed with cancer. The first family spoke openly of the diagnosis. She opted not to undergo treatment and after five months, passed away.
“There was all this anticipation of need when the diagnosis came, but that need did not actually manifest itself much until the last few weeks of my mother’s life. She was fortunate to live comfortably until then, and was indeed in decent enough shape, that she was still making coffee for my dad every morning, up until those last few weeks. Our help for her was largely emotional support and keeping true to her wishes of spending as much time with family as she could. My mother waited until she’d checked the last items off her “To Do” list—a granddaughter’s birthday, a dance recital, and Dad’s hemorrhoid surgery—and then she stopped eating. She passed away on Father’s Day, surrounded by her husband and children who loved her so.” What to Do about Mama? P. 280
When I offered my son-in-law a copy of “The Conversation Project” which encourages dialogue between parents and children, he was angry with me, calling me “insensitive”. His mother opted for treatment, but sadly, the result was the same. Without going into the details, I think it would be accurate to say that her experience was in many ways, quite different that the one described above.
- It’s never too early to make a plan. Consider how caring for a parent will affect you, your marriage, your family, and your career. There are times when you must make difficult decisions in order to avoid even greater negative consequences.
I found from personal experience that Caregiving isn’t a short-term project. It can go on for a year, three, five, ten, twenty, or more. If you are proactive about making choices for on-going care you may avoid the caregiver burnout and frustration—the sources of emotional stress that can cause one’s health to decline. I know it did for me.
Cynthia Hickman gets right to the point in her August 16, 2021, blog post of “Your Proactive Caregiver Advocate: Dr. Cynthia Speaks!” and it’s a valuable point, to be sure.
Take the Blinders Off-Your Parents Are Aging!
Cynthia Hickman’s life-events regarding the death of her parents are similar to mine. Her father died in 1965 at the age of 46, whereas her mother did not pass away until 2017 when she reached a more advanced age. My father died in 1963 at the age of 48—and the circumstances of his death were a major formative factor in my life. My mother died in 1998 at the age of 77, which—although a more “acceptable” age—is one that heightens my own awareness of mortality, since I am now 72.
Cynthia Hickman talks about the circle of life and points out that the process of our bodies breaking down is nothing more than a natural part of life’s cycle. She goes on to ask the question:
Should We Prepare or Should We Wait?
It is her position that “we must remove the blinders and deal with the reality of our family circle.” She recommends that we acknowledge the actions and patterns of those we love; that we are proactive and self-aware of our roles, and that we embrace readiness rather than run from it.
I have had some major life experiences that form my perspective—and I must report that, like Cynthia, I have a strong belief in “prepare”. Although you can never be in “control” of everything that happens in life, by adopting Cynthia’s mode of thinking you will find yourself in a better position to step into caregiving with less stress and more confidence in your ability to handle life-challenges.
When you avoid confronting difficult topics—often to the point of denial—they only become more challenging because you are ill-prepared. Furthermore, you will create a greater burden for your own children when the time comes that you are in need of care.
Following is a list of my own past blog posts that deal the topic of being prepared.
- Attitudes about Caregiving Education
- The “We don’t need it yet” phenomenon
- Thoughts about Denial
- More about Denial
- Becoming a Caregiver and Planning for the Future
- Burdening Our Kids–Revisited
- Lickity Splickity or Little by Little?
- It Pays to Prepare
- Processing the Pictures
- The Conversation Project
The July 14, 2021, The Caring Generation Podcast focuses on the parent-child relationship.
Resentment Towards Parents – The Caring Generation®
But in this post, I would like to focus on the topic of resentment from a broader perspective. As caregivers soon discover, caregiving is fraught with a wide variety of emotions. In my own situation as a daughter-in-law caregiver, resentment played a big part in the decisions I made in the last two years of our caregiving relationship. Resentment was an emotion I wanted to avoid.
These “non-natural-child” relationships can bring a whole new set of emotional conflicts, such as difficulty adjusting to unfamiliar roles or experiencing resentment for making sacrifices that the “children” are not willing to make.What to Do about Mama? p. 151
My husband has three siblings—one brother and two sisters. I’m not sure if each of their childhood positions in the family played a role in the caregiving dynamics, but interestingly, it was the “middle children” who were most concerned about their mother living alone in Florida. My husband, the oldest, and his “baby” sister were more inclined to accept their mother’s stated preference of continuing to live at a distance from her children.
There was a lot of discussion, including a family meeting, and it was decided that Mom would move North and live near us and several of her grandchildren who were also located in the area. Although my husband and I were her frontline caregivers, it was our expectation that his siblings, who were all able to travel to the area within a couple of hours, would visit frequently.
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?What to Do about Mama? p. 167
It was also our expectation that as caregiving needs accelerated, the children would all pitch in to share the responsibility. After two years, it became necessary for my mother-in-law to receive a greater level-of-care than she was receiving in her independent senior living community. She then moved into our home, and I became her fulltime caregiver. The arrangement worked well for another two years.
But eventually, Mom’s health conditions hit the “slippery slope”. When this occurred, and more involvement was not forthcoming, we had a choice to make. For me personally, the choice became to either “accept” the status quo and feel resentful, or to confront the situation and establish boundary lines. I chose the latter because I did not want to carry the burden of resentment.
Don’t set your bar too high in comparison to the standards of other involved parties. Set boundary lines and stick to them. Taking on too much commitment and making too much sacrifice breeds resentment.What to Do about Mama? p. 256
We called another family meeting, and eventually, a family mediation, which improved our system of shared responsibility. However, in all honesty, it eventually resulted in my husband’s estrangement from his brother, and a much more tentative relationship with his sisters. For me, I am profoundly saddened by the loss of the once-close relationship I had with my husband’s family. I believe, however, that if I had allowed resentment to take hold, it would have been worse.
Now that our caregiving has ended, the relief is so palpable that I have no more anger, resentment, or bitterness left. I do not hold grudges, but I am a little wistful that the “closeness” of the past is probably in the past, and I am unsure of any potential for the future.What to Do about Mama? p. 194
Listen to the podcast to hear more about the following ideas:
- Resentment is caused by a lack of support and appreciation
- Differences in values can cause relationship challenges
- Personality differences impact resentment
- How to stop resentment
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!
In regard to the June 2, 2021, Caring Generation Podcast—Taking Care of Family: Living for Someone Else—by Pamela Wilson–when I listened to this Podcast, I checked all of the following off as having had a significant impact in my own 24/7 caregiving experience. Supportive examples from What to do About Mama? are in blue.
What does 24/7 care mean?
- The individual in need of care may be at risk of injury or other safety concerns if left alone for any time during a 24-hour period.
- The term 24/7 care is often first heard after an elderly parent is either hospitalized, or in a nursing home for rehabilitation after a serious injury or health issue.
Mom nearly collapsed twice Monday night while I was helping her from the bathroom to the bedroom. I just could not physically handle her anymore. Normally I become highly focused when there is a problem to solve, but this time I felt at a loss about how to proceed. I called the doctor on his cell phone, and he instructed me to take her to the ER. He also said that my mother-in-law was probably moving beyond my ability to care for, and that we should consider placing her in a nursing home.An Unremarkable and Imperfect Grandma, (my memoir) p. 414
Goal upon release:
- If a parent has been living alone at home, the individual’s goal or the family’s wish is usually for a return to independent living.
When Mom was discharged, she returned to the retirement facility. The day after Thanksgiving she fell in her apartment, resulting in another trip to the emergency room. She had broken her pelvis again, this time in two places on the other side, which resulted in another hospital stay and another nursing home admission for rehab. Mom was discharged after two months and returned once again to her retirement home in early 2007. However, this time David and I informed Mom and his siblings that we were not going to repeat this process if she was injured and debilitated once more; something had to be done to put an end to this vicious cycle.What to Do about Mama? p. 11
- Parents often deny they need “help” because the term can have a negative connotation when viewed as meaning “incapable of self-care”.
- The ability to return to independence can be vague in terms of time and ability level.
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:
*Maintain an updated medical history to take to all doctor appointmentsWhat to Do about Mama? p. 162
*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–aids and hospice personnel
A serious talk is needed to determine:
- What level of independence necessary to return home?
- What efforts will need to be made?
- How much involvement and commitment will be required of caregivers?
- Will your parent commit to following doctor’s orders? Will he/she go above and beyond to establish habits that support better health and more physical activity?
We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving – which now included hands-on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the wheelchair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities – was just more than I could handle in my current physical condition.What to Do about Mama? p. 434
Options to be explored:
- Paid in-home caregivers
When the Aging care manager outlined the specifics of the waiver program’s “Services My Way” plan, I was floored. It provided more than I had dreamed in my wildest imagination: A 24/7 service provider; expensive equipment, such as an electric Hoyer lift, a customized wheelchair, and a combination shower wheelchair-commode; and environmental modifications, including ramps, laminate flooring, and a handicapped-accessible bathroom modification with a wheel-in shower chair.What to Do about Mama? p. 314
- Moving to a care community.
I accepted more responsibility as my parents’ conditions worsened. Eventually, my mom convinced my dad they should move to my city to end the last-minute emergency flights for me and allow me to keep closer tabs on their situation, including help arrangements. I chose a continuing care retirement community (CCRC) near my house, and it was the best decision for them and for me. My mother called the shots on the move, and of course, I agreed. Moving them to my hometown was the biggest change in my caregiving situation, and it certainly did ratchet up my involvement and time commitment.What to Do About Mama? From Marianne’s Story p. 98
- Relying on family caregiving
Boundaries to be set:
- As the caregiver, what level of time or money you can you commit?
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.What to Do about Mama? p. 2
If care becomes permanent, what will be the next steps taken to meet increasing needs?
Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? p. 252
A problem to avoid:
- Caregivers contributing to the situation by becoming indispensable. Be aware that each hospitalization or nursing home stay opens up another point for decision-making since escalating needs require new approaches.
She made comments such as, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.”
“I understand that you are that you are apprehensive of change and what it will be like for you living at Shelley’s. I say with confidence that Shelley is very capable and resourceful and will see that you are well-cared for. And after all, she is your daughter.”What to Do about Mama? pp, 32 & 35
A principal to follow:
- Establishing equal participation in care. This is essential so that that caregiver does not become responsible for taking on total responsibility for a 24/7 care situation.
Develop a “contract of expectations and commitments that everyone understands, agrees to, and signs off on.What to Do about Mama? p. 255
How many of you have been inundated with a show of hands?
Aging in Place or in a Care Facility
Once again, I am drawing upon information from The Caring Generation by Pamela Wilson. I follow this site for two reasons.
- First of all, I find that most of the information Pamela Wilson discusses is also addressed in my book, What to Do about Mama? The Expectations and Realities of Caregiving. The main difference is—what I have written is not culled from the experts, but from my own personal experiences and those of the other 3 dozen or so caregivers who shared their caregiving stories. Pamela also draws from personal experience, but she has elevated her knowledge and involvement to a professional level. So, in general, what she has to say validates, in my mind, the substance of my book.
- Secondly, Pamela Wilson encourages educating oneself about the many aspects of caregiving and the options available to managing the responsibility. She does not present anything as a quick fix or a way to make caregiving “easy”. I always appreciate that truth.
In this blog post, I will share experiences from my own caregiving story that appear in What to do About Mama? in response to the subject matter contained in the following podcasts by Pamela Wilson:
- Caregiver Decision Making: How to Take Care of Aging Parents–The Caring Generation by Pamela Wilson, May 2, 2021
Caregiver Decision Making: How to Take Care of Aging Parents (pameladwilson.com)
- Putting a Parent Into a Nursing Home – The Caring Generation® by Pamela Wilson May 12, 2021
Putting a Parent Into a Nursing Home – The Caring Generation® (pameladwilson.com)
As Pamela discusses, how to take care of aging parents requires a great deal of decision making not only by caregivers and their siblings, but by their adult parents, as well. As one choice leads to the next, mistakes can and do happen -especially when caregivers do not thoroughly understand the potential consequences of the decisions made. Relationships are challenged when conflicts between adult children and parents arise out of the differences in values, needs, and goals of care situations.
I agree with Pamela that caregiver decision making is best accomplished when adult parents and children have like goals, a positive relationship, and accurate information to make the best decisions. Keeping in mind that I was a daughter-in-law, when I entered my caregiving relationship, I thought all our boxes had been checked. I had good relationship with my husband’s family, and I was knowledgeable because I was an Assessor for our Area Agency on Aging. But I discovered that even for those who are well-informed about what to expect, “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? p.189)
I thought we did a lot of things right:
• We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.
• We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.
• We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.
• We provided Mom with a multitude of opportunities to socialize with both family and friends
Still, we did a lot of things wrong:
• We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.
• We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?
• We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. Caregiving is fraught with a lack of control over both the situations that occur and the people involved. Our expectations of others were unrealistic; our expectations of ourselves were self-defeating.
• Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.What to Do about Mama? pp. 39-40
MAKING DECISIONS ABOUT CARE:
Home care, or aging in place, occurs when a senior lives at home or with children. It involves caregiver support with handling daily activities, maintaining a household, managing finances, and coordinating related support systems. Common complications involve mounting health concerns and related physical challenges, as well as potential memory loss—all of which amount to a tremendous investment of time.
Pamela Wilson identifies the top four elder care pressures of home care.
- Responding to Health Emergencies.
These are often crisis situations that require navigating the healthcare system under pressure. Keep in mind that patients are discharged sicker and quicker with the expectation that the family will provide the needed care.
Mom was in the nursing home from mid-December until the beginning of February 2010, despite the fact that she had fallen in the facility a week before her discharge. I did not feel she was strong enough to be discharged, and indeed, she had two falls the first weekend home. Once again, we began in-home services: physical therapist, occupational therapist, and RN. I made sure to give the RN a heads-up before she came―Mom looked like she’d been beaten up due to multiple skin tears from her falls.What to Do about Mama? p. 21
- End of Life Care Decisions.
End-of-life care decisions can also arise quickly. They are particularly problematic when discussions have not occurred previously and therefore conflict can arise in the family.
- The Risky Side of Caregiver Decision Making Choices
Caregiver decision-making can take several paths. If a parent has advanced dementia, the adult child with a medical Power of Attorney (POA) has decision-making power. If there is less dementia, the caregiver has a duty to follow the direction of a parent.
If the caregiver with a POA follows an autocratic or directive decision-making process, he or she risks owning and being blamed for decisions that go wrong or risk permanently damaging relationships with aging parents. Too often, families have a wait-and-see attitude. This leads to decision making in a crisis situation, which limits options. Caregivers and aging parents often cannot agree—resulting in making decisions in worst-case scenarios
During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she were not cognitive, it would be obvious what step to take next (no treatment). He then continued by saying that since she was cognitively intact, decisions about treatment were completely up to her.”What to Do about Mama? p. 227
- The Burden of Caregiver Decision Making
Decision making becomes a problem for caregivers when, despite doing their best, they experience regret, doubts, and second thoughts, in addition to criticism from the other related players. For that reason, it is better to be informed by consulting elder care experts about caregiving decision making and care planning for aging parents.
Nursing home care is considered when more care is needed that a single caregiver can provide. The option of placing a loved one into a nursing home has gained attention and become more complicated due to the pandemic. In general, elderly living in nursing homes have more significant needs due to physical disabilities and health issues. Many have multiple health conditions that benefit from having access to medical care from a nurse or a doctor, including dementia, which creates the risk of wandering.
Pamela Wilson stresses the importance of communication in all caregiving situations. She warns that if you are committing to in-home care, be careful not to make promises you can’t keep about not putting a parent into a nursing home.
Remember, however, not to make unrealistic promises; you may need a way out of the commitment. Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? pp. 251-252
She also stresses the importance of discussing the potential of putting a parent into a nursing home, early on—conversations about what happens when mom or dad need more care than the family can provide. Putting a parent into a nursing home has many factors that families don’t plan for and don’t expect, and often involve the “Big G”—or GUILT.
Once again, our conversation felt strained. I asked Sandy if she needed to clear the air about anything else. Big mistake! She told me that she felt putting Mom in the nursing home for a respite stay was selfish on my part.What to Do about Mama? p. 26
So, do your homework. Find out what a nursing home is like before you talk to your parent. See a room, visit the dining room, talk to the residents. Be prepared to talk about money. Creating a care plan for an aging parent, or a spouse is a critical component of avoiding unexpected and shocking surprises, whether caring for parents at home or putting them into a nursing home.
If you have taken the wait-and-see approach, and you are suffering repercussions—the time for discussion is now. Explain that caregivers become exhausted for many reasons. There are aspects of caring for a parent that take more and more time as an illness progresses. A caregiver who keeps going and going without realizing the toll that caregiving is taking poses a risk to an aging parent or a spouse. Caregivers become ill and incapacitated, which interferes with their ability to provide care. When the caregiver is worn out; this can impact the quality of care they provide.
I went to the appointment and made the decision to have bilateral knee replacements. That evening I started becoming very anxious. Was I making the right decision? We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving (which now included hands on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the transport chair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities) was just more than I could handle in my current physical condition. David called Shelley and made plans for Mom to move the week before my surgery, which was scheduled for early April.What to Do about Mama? p. 33
If you can no longer be the caregiver, let the family know you are making alternative plans and now is the time for the “others” to step up and personally or financially to help if they disagree with nursing home placement.
At the end of March, my mother-in-law moved to her daughter’s home. . . As David’s family has always said when handing over responsibility from one family member to the next, the “passing of the feathers” had taken place. . . One month after moving in, Mom had an episode of some sort while in the shower. . . She passed away at 10:30 that [the next] morning.What to Do about Mama? p. 26
Note: These two podcasts are about in-home and nursing home care. Please keep in mind that these are two caregiving profiles on opposite ends of the caregiving continuum. There are a number of options in-between including in-home caregiving services, assisted living facilities, and continuing care retirement communities. All are viable options worthy of consideration for long-term and temporary care, all of which and are addressed in What to Do about Mama?
Pamela Wilson goes on to say: When elderly parents require 24-hour care seven days a week, if the family can afford to hire a caregiver to supplement family caregiver time, this represents a bridge that can delay putting a parent into a nursing home.
An affirmation from Pamela Wilson: No matter how the caregiving relationship ends it is important for caregivers to acknowledge all that they have done to help a parent, spouse, or other, remain independent and at home. You did and you are doing a good job. No one can take that from you. Be proud of your efforts and know that caregiving isn’t over after putting a parent into a nursing home. To make sure your parent receives good care you will still be involved. Last but not least, realize that you did not cause the illness or the declines that your parents are experiencing. Nor can you heal your parent or convince your parent to do things that they don’t want to do, those things that might help maintain or improve their health issues. We all have a choice and the free will to do what we want or what we think is best.
Pamela Wilson’s guest, Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris discusses cultural differences in families and how they affect caregiving relationships. Her remarks sum up what I believe was at the core of the disintegration of the caregiving relationship my husband and I had with his mother and his family.
Family background and culture impacts caregiving and family relationships. Culture is one factor that has a huge impact on how people think and behave. Individualistic cultures are those that stress the needs of the individual over the needs of the group as a whole. In this type of culture, people are seen as independent and autonomous. Social preferences tend to be dictated by the attitudes and preferences of individuals. Cultures in North America, Western Europe tend to be more individualistic. Collectivistic cultures express the importance of the group and social cooperation. When people in collectivistic cultures face hardship or difficulties, they tend to be more likely to turn to family and community for support. Collectivistic cultures can traditionally be found in places like Africa, Asia, South America.
Relationships change between adult children and their parents, and siblings, and there are a number of contributing factors: 1)Role reversals; 2) Family caregiving is reactive and not proactive—meaning that you don’t know what you’ll need until you’re right in the middle of it; 3) Even if you are a family with a plan, people and situations change and vary; 4) Change can and does cause conflict; and 5) Some families build closer relationships through caregiving activities—those with a history of high levels of closeness, low levels of conflict, and strong communication skills.
Our world has never seen so many older adults living at one time. Care trends in general in this country are flipping back to more home and palliative care methods. Our system just really needs to change on a large scale to meet the needs of our entire aging population.
It was the issue of family culture which I was least prepared for when I took on the role of primary caregiver for my mother-in-law. I never considered that we would not be available to my mother-in-law if and when there was a need. I saw caregiving as an opportunity to demonstrate my appreciation for being a part of their family since the age of 18. This was to be my gift to my all of my in-laws.
It was agreed upon during a family discussion that their mother’s care would be a shared responsibility, and that all of the siblings would be willing to make personal sacrifices to maintain her quality of living. It was my expectation that they would do this willingly and I never even doubted they would follow through with their verbal commitment.
I felt that most of the escalating friction of the past two years could be attributed to my role as an in-law caregiver. I found that I didn’t really understand how to navigate the family culture. It had just not been a problem before the relationship had become so complex.What to Do about Mama? p. 31
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
Easy Living December 1, 2020 Article: You Are a Great Daughter and These Examples Prove It!
My family, like most families, is struggling with how to navigate the upcoming holidays. There’s so much conflict within each of us between what we WANT to do and what we NEED to do, not only to be safe within our family, but to be responsible citizens of our neighborhood, our state, our country, and our world.
I feel confident that we will work it out because–not only do I have a great daughter, but I have two—and in addition, I have a great son and a great daughter-in-law. The sons-in-law prefer to navigate around the edges.
Between the four of them, they pretty much cover all the bases on the Easy Living list that follows. The list is basically a good start because as they state: “This list could go on and on. It is not the same in all families. Parents show their love in different ways, as do their children. Your dynamics might be different. You can be a great daughter and do none of these things. And, sometimes you’ll do them while at other times you won’t be able to.”
- You call your Mom to check in on her.
- You call her just to say hi. Or, you call to ask her for advice.
- You tell your parents you love them.
- You cook meals, grocery shop for them, or send them meals.
- You respect your parents’ wishes or statements that they don’t need help.
- You’re there if they do.
- You listen.
- You share happy memories with them.
- You send Mom a text or note to let her know you’re thinking about her.
- You teach your kids Mom’s best recipe.
- You share stories about your parents with your kids.
- You investigate resources that might help…even if they’re not ready for them yet.
- You read a lot of articles about aging and senior health or study up on Mom’s health issue.
- Your parents talk about you proudly to their friends.
- Mom calls you for input. Or, calls you just to talk.
- Dad asks you to help him figure out his Medicare plan.
- They love coming out to see your kids’ games or performances, or just hearing about how they’re doing.
- They ask you how you’re doing, they still worry about you too.
- They tell you stories and share bits of wisdom.
- They send you notes or clip articles they think will interest you.
Make it a game!
- Make additions to the list
- Each player in turn, reads one item from the list out loud.
- Each player writes the name of the family member who is best-described by the statement.
- The family member named most for the statement gets one point for each time he or she is named.
- Use the exercise as a conversation starter.
I recently read the November 10, 2020, DailyCaring.com article:
OVERCOME 3 EXCUSES FROM RELATIVES WHO AVOID CAREGIVING
Upon reading the article, I thought to myself: Caregiving really is a timeless topic. I have blogged about this before. So, I did a little exploring and—yep—I had. On March 2, 2014, I posted It’s in the Book! It featured Carol Bradley Bursack’s article: TOP 3 EXCUSES FROM SIBLINGS WHO DON’T HELP WITH CAREGIVING.
Although the three excuses listed in each article are not duplications, the general point is the same. As stated in the DailyCaring article: Caregivers need more help and support. Many caregivers take on more responsibility for their older adult than others in their family. In AARP’s 2020 report, half of all family caregivers said that nobody else provided unpaid care. Caring for an older adult by yourself can be exhausting and damaging to health. But getting family to help is often a challenge. Getting a better understanding of why family members aren’t doing their part helps you find ways to get them to participate in caregiving.
OVERCOME 3 EXCUSES FROM RELATIVES WHO AVOID CAREGIVING
- They think you don’t need any help
It may look like you’ve got everything under control and don’t need help. Those who aren’t involved in day-to-day care have no idea of how much caregiving entails.
- They don’t know how to help
They respond better to requests and to assigned specific tasks.
- They’re scared of doing a bad job
Firsthand experience is more effective.
More exposure = more comfortable
TOP 3 EXCUSES FROM SIBLINGS WHO DON’T HELP WITH CAREGIVING
- I don’t have time
Probably the most often used excuse implies that you do.
- I don’t have the money
But that does not preclude finding a way to pitch in and help out.
- I Can’t Bear to See Mom/Dad Like That
They think you like it? Day after day you watch the decline. You help them with everything, including very intimate day-to-day functions, such as toileting. Do your siblings think this step has been easy for you? It is difficult to watch a loved one’s decline–but it’s difficult for the caregiver(s), too.
Related and Relevant quotes from What to Do about Mama?
“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. And things sometimes do get better, adjustments are made, and a new norm is established. But, inevitably, there is another setback, or more probably, a new crisis. Caregivers may begin to realize that they just might need some help and begin to call on those people they expect to provide that help—family. (There’s nothing like caregiving to learn about our families.)”What to Do about Mama? p. 174
The issue again is expectations—those you place on yourself. You are only human. You will make mistakes. You will lose patience. Forgive yourself. Use each “shortfall” as a learning experience. Allow yourself to feel and express your emotions; don’t internalize them. Cultivate your connection with family and friends, choosing relationships with positive people and minimizing contact with negative ones. Enlist your family to help. Make a list of all the things you do, and be specific about the help you need.What to Do about Mama? p. 179
“You don’t understand the pressures of our jobs.”What to Do about Mama? p. 13
“My mother-in-law’s decline was especially difficult for my brother-in-law; his wife made a point to express this to me very specifically. He had no confidence in his ability to be alone with her. With tears in his eyes, he told me that he saw himself as the “last bastion of propriety” in his relationship with his mother. I did understand how difficult it is to watch a loved one’s decline; his brother, after all, faced it every day. I felt, however, that was not an acceptable excuse for not assuming responsibility.”What to Do about Mama? p. 15:
The number one recommendation from the caregiver-contributors to this book is to get help. Caregivers tend to step in with their “can-do” attitudes and continue to shoulder ever-increasing responsibility until they reach the point of being crushed by the burden. So, whether you hire help, accept help, or both—just do it!What to Do about Mama? p. 170