Cancer and Chemotherapy during COVID

Posted: October 26, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships, Katie's Story, Topics of Current Interest | Tags: , , , , , , , , , , , , , , , , , , | Leave a comment

As far as my life-defining experiences are concerned, caregiving ranks right up at the top, along with the illness and death of my father, and with parenting.

After living through difficult caregiving situations, I think it’s safe to say that most people do not want to burden their children. However, from what I observed when I worked as an Assessor at the Area Agency on Aging and what I experienced as a caregiver, I discovered that in the attempt to not be burdensome, parents become exactly that. Ironic, isn’t it?

It is my theory that young people think they don’t need to give caregiving much thought; current caregivers are too darn busy; and past caregivers want to put it all behind them.

In my opinion, the primary reason for this is the lack of communication about the topic. Talking with your children, and even grandchildren, about lifestyle choices and end-of-life care is extremely important.

But because we as a society generally practice avoidance and denial about the topic of caregiving, we delay our response until there are rapidly escalating needs or episodes of crisis with which to deal. Discussion and planning are not usually done “ahead of time”, but as an evolutionary process.

If you look back through my blog posts over the years you will find that I revisit this topic with frequency, as I do likewise with friends and acquaintances who are either embroiled in in caregiving or on the precipice of a cliff and ready to fall off.

A number of my friends contributed caregiver stories for my book What to Do about Mama? One of those was “Patricia” (See Patricia’s Story in What to Do about Mama? pp. 118-120).

Patricia had a sudden onset of cancer during the COVID pandemic. If you want to follow the complete story, go to the Newsletters tab above and sign up—either through my email address or one of the two videos. For the past six months I have been documenting Patricia’s experience with cancer and I will be glad to send you the back editions.

Another friend who contributed a story was Katie. She had two starkly different caregiving situations, one for her mother, the other her mother-in-law. (See Katie’s Story pp 122-126). Together, Katie, Judene, and I, along with our spouses who worked together in the steel making business, were friends. We have witnessed first-hand how life can change dramatically in an instant when a surgeon makes a mistake. Most notable is Katie’s personal experience when, at the age of 64, she suddenly became a poster child for the fragility of life, and she found herself in need of fulltime caregiving. (See Katie’s Update in What to Do about Mama? pp. 308-319.)

This friend, by the way, is one of those individuals who downsized her home and “got organized” proactively—and is now glad that she did. (See Patricia’s Update in What to Do about Mama? pp. 294-296).

“Judene’s ” had an extreme experience as a long-distance caregiving. (See Judene’s Story, What to Do about Mama? pp. 118-120). She also contributed an update where she expressed: 

The problems and difficulties of caregiving tend to be repeated to some degree. It’s like anything else that is unpleasant that happens to you or a loved one. You don’t dig in to learn about what avenues are out there to assist you until you have a need for them. And we tend not to trouble our children or friends with unpleasant things, so they don’t have an opportunity to learn from our experiences, such as caregiving. Also, until faced with the problems directly, we often don’t learn even if someone tries to share their experiences. My husband and I have taken steps to prepare for our future; we have long-term health-care coverage. But I acknowledge there are additional things we should do, such as clean out the house; designate recipients of items; pre-plan our funerals; and make sure our will is in order. I guess we avoid said things because it’s just too much of a downer.

What to Do about Mama? pp. 288-289

And it is at this point I begin to feel like I’m beating a dead horse. I agree with Judene’s assessment about avoidance. She and her husband live in a beautiful home high on a hill with a long steep driveway and a yard that requires a lot of care and upkeep. Her husband cannot imagine not living in their home, nor do they believe in hiring anyone to clear the snow from their drive and to do the landscaping. A couple of years ago he participated in a senior triathlon and is proud of his physical condition—as well he should be. But as inevitable, he is now experiencing respiratory problems—and I am concerned that life is coming at them fast.

The following article, Caring and Grieving in the Shadow of COVID September 9, 2021, by Annika Vera brought me to tears.  It also made me think of my friend Patricia. 

Caring and Grieving in the Shadow of COVID | The Caregiver Space

Such a young woman with so much on her plate. When her mother had brain surgery to remove a tumor in May 2020—

  • She thought that was the most difficult thing that could happen during the pandemic.
  • She thought once her mother recovered, her caregiving role would end.
  • She thought she would go back to her life as a “normal” 20-year-old woman.

Three weeks before her 21st birthday, less than two months after her mother’s surgery—

  • Her mother was diagnosed with breast cancer.
  • (“My role as caregiver had only just begun.”)
  • The COVID-19 pandemic—a another layer of stress and anxiety on top of the “cancer stuff.”
  • I was now living with an immunocompromised person
  • From July 2020 to March 2021, we were isolated—no work, school, family, or friends. 
  • We only saw doctors and nurses at the hospital.
  • The fear of COVID was so intense that it almost became a distraction from the cancer.
  • Her focus changed from curing an illness to not contracting a virus.
  • Cancer brought uncertainty about life and death—
  • Contracting COVID ascertained the outcome would be bad.
  • Chemotherapy was a game of “Will they let me in with her not?”
  • Often she would be left to wait outside the glass doors for hours.
  • Every day she watched as the drugs made her mother sicker and sicker.
  • Then the cycle would repeat.
  • But another tragedy began to unfold.
  • Her grandfather had cancer, too and was declining quickly.
  • He was overseas so they were unable to visit.
  • Watching him die over a video call—a surreal nightmare.
  • He passed away without our seeing him one last time.
  • Being a caregiver to someone very ill—helpless.
  • Watching a loved in another country pass away over a video call—powerless.
  • We have very little control of our lives, but…
  • I got through the last many months of hell.
  • I continue to wake up to whatever the next day brings.
  • The strength comes when you think you can’t go on, but you do.
  • Although we are weak, sick, and grieving—we are at the same time—stronger.

Resentment and Caregiving

Posted: August 18, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , | Leave a comment

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

https://pameladwilson.com/resentment-towards-parents-caregivers-how-to-stop-resenting-aging-parents-video-the-caring-generation-podcasts-radio-program/

How to Disentangle from Caregiving

Posted: July 18, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , , , , , , , | Leave a comment

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

  1. Decide and commit to changing the situation mentally—in your mind.
  2. Create a family care plan to present and discuss with your parents and the family.
  3. Be open to learning.
  4. Be honest and transparent.
  5. Hold a family meeting to announce your decision to decrease, modify, or end caregiving responsibilities.
  6. Support two-way conversations with siblings, parents, and others who want to discuss the plan.
  7. 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

Communication

  • 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!

Post-Caregiving Déjà Vu

Posted: June 11, 2021 | Author: | Filed under: Aftermath of Caregiving, Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Financial Considerations, Impact on Family Relationships | Tags: , , , | Leave a comment

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.  

24 7 Care For Elderly – The Caring Generation® – Pamela D Wilson

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 appointments
*Maintain hearing aids; help to put them in
*Manage oxygen
*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

What to Do about Mama? p. 162

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?

CAREGIVING: It’s Never Easy

Posted: February 11, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , , , , | Leave a comment

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.

Being a Caregiver Is Not Easy – The Caring Generation® (pameladwilson.com)

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:

Number One:
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

Number Two:
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

Number Three:
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

Number Four:
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

Number Five:
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

Number Six:
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

Number Seven:
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

Number Eight:
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

Caregiver Characteristics

Posted: January 14, 2021 | Author: | Filed under: Caregiving Roles and Responsibilities | Tags: , , , | Leave a comment

CaregiverDave
Your Guide to Avoiding Burnout & Surviving Grief

The January 14, 2021, CaregiverDave article “6 Best Qualities You Need To Become a Good Caregiver” lists and discusses the top half-dozen assets and abilities that they deem caregivers must have in order to perform their duties in an efficient manner.

6 Best Qualities You Need To Become a Good Caregiver (caregiverdave.com)

  • Patience & Flexibility
  • Compassion & Empathy
  • Time Management Skills
  • Sound Communicator
  • Optimism & Enthusiasm
  • Physical Strength & Stamina

The article suggests that these tips will surely help you become a better caregiver, and that if you possess them you will never have to face caregiver stress and burnout. The article goes on to say that you will be able to do your job in an even more efficient manner if you avail yourself of services such as caregiver support groups and caregiver coaching.

Whereas I agree with the importance of the qualities and recommendations listed, I will point out that I am wary of using language and advice that indicates “must have” characteristics and “never have to face” situations.  In my opinion, such language sets caregivers up for a sense of failure when expectations are not fully met. 

Caregiving is not, nor will it ever be, easy.

In our book, What to Do about Mama?  we also address the issue of caregiver characteristics.  You will certainly find some commonalities between the two sources.  But we stress more the importance of recognizing your abilities, identifying your needs, and developing your strengths. 

“We think, too, that “inner strength” refers to the gifts we might have been born with. But they are also the ones that we have since developed, such as character and abilities. These qualities can all be looked at as “God-given,” if that makes self-acknowledgement easier.

Sometimes a person doesn’t know how well he or she can swim until a near-drowning situation. That’s an apropos analogy for caregiving. No one, least of all a caregiver, should ever underestimate the difficulty of the task at hand.

But if you look at caregiving as an opportunity to discover and apply the skills you may not even have known you had, it will seem much more manageable—and even positive. Look at the gifts and strengths you have, not only in character, but in other areas as well. Just because caregiving is new to you (or new in the case of caring for a senior) and particularly difficult, doesn’t mean your abilities don’t apply.

Recommendations We are addressing here the characteristics 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. The following are attributes that not only facilitate performing your caregiving responsibilities but also can potentially enrich all your relationships.

What to Do about Mama? pp. 262-268

We go on to list and discuss the following caregiver characteristics:

  • Love, care, and compassion
  • Commitment to family
  • Problem-solving
  • Apply knowledge and skills
  • Strong work ethic
  • Understand and set personal limits
  • Effective communication
  • Empower and facilitate

Excuses Used to Avoid Caregiving–Revisited

Posted: November 15, 2020 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Impact on Family Relationships | Tags: , , , | Leave a comment

 

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

  1. 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.
  2. They don’t know how to help
    They respond better to requests and to assigned specific tasks.
  3. 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

  1. I don’t have time
    Probably the most often used excuse implies that you do.
  2. I don’t have the money
    But that does not preclude finding a way to pitch in and help out.
  3. 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

 

Explore both articles for suggestions how to overcome the excuses relatives use to avoid caregiving so they’ll give you the help you need and deserve.

Fostering your parent’s independence

Posted: June 27, 2020 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges | Tags: , , , , | Leave a comment

Although I am now a senior citizen, finding balance continues to be one of the most challenging aspects of being a parent. Parenting my children as they grew up often felt like walking a tightrope, and even though my children are now grown with families of their own, I frequently feel the same way.  The funny thing is, as a caregiver for a parent, parent-child roles can become reversed, and you find yourself on that tightrope all over again.  I think the article 4 Ways a Caregiver Can Encourage a Loved One’s Independence by Barry J. Jacobs, AARP is a good example. 

https://www.aarp.org/caregiving/life-balance/info-2017/encourage-independence-bjj.html

In this article, Jacobs describes the problem he had finding the balance between doing too much and doing too little for his mother, saying: “If I had done nothing at all for her, then I believe she would have floundered. But I finally realized that by doing too much for her, I trampled her dignity.” 

His four recommendations, with my interpretations, follow:

  • Powwow and plan:  Communicate with your parent early, often, and openly. 
  • Don’t jump in with help too quickly. It is advantageous to allow your parent to be as self-reliant as they can be.  Doing too much, too soon, fosters dependency.
  • Focus on what your loved one can still do. No one likes to feel marginalized—as if they no longer have relevance.  Build upon your parent’s strengths. 
  • Frame help as empowering. Sometimes seniors regard “aids” as demeaning; they avoid using them because they think it makes them appear “old”.  Discuss how using “aids” can open up more of the world to them:  with a hearing aid you won’t miss so many conversations; with a transport chair you will be able to go many more places.  

After reading Barry Jacobs article, I identified three examples of when it was difficult for me to find the best level of balance with my mother-in-law, for whom I was the primary caregiver. 

The first was when she moved into our home after multiple episodes of falls that resulted in injury, hospitalization, and rehabilitation. For weeks I assisted with her daily morning exercises. After she had mastered them, I asked her doctor if it was safe for her to do them on her own–to which he replied, “Yes.” I suggested she do them at the kitchen island while I was buzzing about with the my household chores.  But, she did not take the initiative and I let it drop. 

Another task I encouraged her to do independently was to dress herself after I had set out her clothes. 

Although it was a slow and difficult process, I expressed to Mom that she would lose all her skills if she didn’t keep working at them.

What to Do about Mama? p. 23

Lastly was the task of setting up her medications.  I had offered a few times but she always turned me down.  My mother-in-law disliked the medication prescribed for congestion because it made her cough, and therefore, she did not take it regularly, as directed. Because of her advanced congestive obstructive pulmonary disease (COPD), it wasn’t long before she became ill and was hospitalized with pneumonia .  After she was released from the hospital, her daughter spoke to her mom and insisted she allow me to set up the medications.  That did not set well, but the family did not relent. 

After the phone call was over, Mom came out, rolling her walker with a vengeance, and said, “Are you happy now?”

What to Do about Mama? p 13

Whether or not I made the best decisions, I do not know.  But I do know–it can can be tricky!

Attitudes about Caregiving Education

Posted: June 4, 2020 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Topics of Current Interest | Tags: , , , , , , , , , , , , , | 1 Comment

I don’t need it!
I’m too busy!
I’m so over it!

Family Caregiver Education – The Caring Generation®
by Pamela Wilson May 30, 2020
The Caregiving Generation Talk Radio:  Caregiver Training 

https://pameladwilson.com/family-caregiver-education-online-caregiver-training-caregiving-courses-the-caring-generation-radio-program/

Honestly? Caregiving can be a real bummer. Although nobody wants to talk about being or needing a caregiver, it is a subject that we can no longer ignore.  The COVID-19 pandemic has made it abundantly clear: 1) Adult children are worried about their parents getting the virus; and 2) Caregiving is one more item to add to the “Things to Do Better” list for future generations.

After my 7-year stint as a caregiver, I wrote What to Do about Mama?  I thought that people just might benefit from what I had learned from both my job as an Assessor at the Area Agency on Aging and my caregiving experience. Since the book was first published, I have found that caregiving is a topic people avoid—like the plague.  And of course, there’s now a lot of irony in that statement. 

On her Caregiving Generation Talk Radio program, Pamela D Wilson, stresses the importance of  Family Caregiver Training and Caregiving Courses.  The following is a synopsis of her discussion peppered with some of my own thoughts and views. 

Caregiving is an unexpected experience—something we don’t usually plan for until a health care crisis occurs.  Like the pandemic (or a plague) caregiving needs can come on suddenly and find you unprepared.  Adult children may not even realize they have taken on the role of caregiver because helping parents by picking up groceries or prescriptions is not how they define the term.   But then needs escalate and the list grows to include such tasks as providing transportation to doctor appointments, assisting with money management and bill paying, providing meals, and making legal, medical and care decisions. Working caregivers who become distracted and are unprepared can feel like life is reeling out of control, not knowing where to turn for help.  Even today, caregiving is viewed as a family responsibility. The workplace may not recognize how employees are effected by their caregiver responsibilities or how the stress impacts the workplace.

Developing a Care Plan 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. Of primary importance is the individual who needs the assistance and 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

It is Pamela Wilson’s position that caregiving courses should be made available through corporate employee health and wellness programs—much like maternity leave and support programs for families raising children.  Family caregiver education and support not only minimizes unexpected and disruptive crises by making a significant difference in the lives of caregivers and their elderly parents, it also helps companies achieve health and wellness program goals of reducing health insurance costs and use.  I would add here that family caregiver education would also be a beneficial addition to life skills curriculums in our schools.   

My mother’s death eased things for me at work, but only to the extent that I realized my boss so resented my need for “flexibility” of hours during my mother’s lengthy end, that our relationship was over. Luckily, an advocate of mine in senior management had another position she felt would be ideal for me—and she offered it to me at my same salary. So, I took it. It’s been a whole new lease on life! I really feel energized, and I’m hoping to keep it until I’m seventy. (I had to take out some loans to finance all the help I had, so this will expunge all that debt by the time I finally do retire.) If I had been allowed to work from home, I would not have needed to take out loans, but my boss at the time would not even consider it. That still hurts. I was literally paying people to watch my mother sleep—something I could have done while I worked from home. But, getting over this means getting over the anger: Get mad; get over it!

What to Do about Mama? pp. 293-294

Pamela Wilson has developed a family caregiver education course. 
Taking Care of Elderly Parents: Stay at Home and Beyond consists of the following:

  • Module 1 Managing Emotions, Family Relationships and Elderly Parents who Refuse Care
  • Module 2 Signs Elderly Parents Need Care: Creating Strategies and Starting Conversations
  • Module 3 Activities of Daily Living, the Effects of Aging on Physical Activity
  • Module 4 Home Safety for Seniors
  • Module 5 Stay Healthy: Daily Routines to Support Positive Care for Elderly Parents
  • Module 6 Memory Loss
  • Module 7 Paying for care for elderly parents
  • Module 8 In Taking Care of Elderly Parents: Stay at Home, and Beyond

While I was listening to Pamela Wilson’s podcast, I was gratified to note that her curriculum addresses a great deal of the material contained in What to Do about Mama?  Expectations and Realities of Caregiving.  This is not a book by experts—but a book based upon the real-life experiences of caregivers in the trenches.  In my opinion, family caregiver education should be based on theory and experience because both perspectives have relevance.  

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. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.

What to Do about Mama? p. 155

Family Caregiver Education creates awareness and provides helpful information. Prepare today to be ready tomorrow. For those people who avoid the subject, becoming a caregiver will be a shock. For those who face it, you will know what to expect and the road will be smoother.

[We} have completed our wills, living wills, powers of attorney, and medical powers of attorney. And because it befits us all to have the “difficult discussion” well before the time of need arises, we have completed the questions found in The Conversation Project Starter Kit and discussed them with our children.

What to Do about Mama? p. 302

Caregiving—it isn’t magic

Posted: May 17, 2020 | Author: | Filed under: Caregiving Roles and Responsibilities | Tags: , , | Leave a comment
Image result for caregiver qualities and skills animated

In the CareGiving.com article, 4 Essential Qualities of Women Caregivers, Louisa Stringer discusses the benefits of caregivers developing an awareness of their inner health.  Specifically addressing those who care for a loved one with cancer, Stringer avers that overall wellbeing is enhanced by recognizing:

  • Caregiving is relational. 
  • Caregivers are resilient.
  • Caregiving is compassion.
  • Caregivers have intuition. 

https://www.caregiving.com/2020/05/4-essential-qualities-of-women-caregivers/.

The qualities and characteristics of caregivers are discussed extensively in What to Do about Mama? 

“We think, too, that “inner strength” refers to the gifts we might have been born with. But they are also the ones that we have since developed, such as character and abilities.”

“We are addressing here the characteristics 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. The following are attributes that not only facilitate performing your caregiving responsibilities but also can potentially enrich all your relationships.”

What to Do about Mama? pp. 263-268
  • Love, care, and compassion
  • Commitment to family
  • Problem-solving
  • Apply knowledge and skills
  • Strong work ethic
  • Understand and set personal limits
  • Effective communication
  • Empower and facilitate

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