Caregiving and Resentment

Pamela Wilson, The Caring Generation, recently discussed the topic of resentment as it applies to conflict that develops when a caregiver feels forced to choose between a spouse and caring for an elderly parent. Actually, Pamela has done a number of podcasts about how resentment is significant to a wide variety of caregiving scenarios and you can check these out here:  You searched for resentment – Pamela D Wilson | The Caring Generation

But the story I want to share today is how resentment played out in my own caregiving experience. I am going to tell this story by sharing excerpts from my book, What to Do about Mama?  by Barbara G. Matthews and Barbara Trainin Blank.

First of all, there was never any resentment between my spouse and me that involved the elderly parent for whom I cared.  Why? Because the elderly parent was his.  Yes, I was the caregiver for my mother-in-law. 

I need to go way back in time to lay a foundation of the relationship I had with my husband’s family. It is very significant to the way I, as a daughter-in-law, ended up becoming the primary caregiver for my mother-in-law. In 1966, my first day at college, when all the freshmen were trolling about checking out members of the opposite sex; I met my future husband. I learned that David came from a military family and that his dad, mom, brother, and two sisters were all still living in Germany. I met David’s family the following summer when they returned to the States, and I was thrilled to be included in their family life. My own family had sort of disintegrated after my father passed away a few years earlier. I always felt cared for and included by David’s family, and that did not change after we married. 

What to Do about Mama? p.7

My father-in-law passed away, suddenly and unexpectedly, during in his sleep one night.

My in-laws lived in Florida, where they had moved in 1971. It was unusual for them to live in one place for so long, since Dad had been in the military for thirty years. Mom did not drive, and David and I extended an open invitation for her to live in our hometown. Mom wanted to stay in Florida and felt she was able to, despite not driving. She would come north three or four times a year and stay about a week with each one of her four children.

What to Do about Mama? p.8

After my mother-in-law’s health began to decline, we began to look for various living options in our hometown, which we would show her when she came to visit.  However, when she remained resolute about staying in Florida and we did not pressure her.  But after a visit, my husband’s brother became alarmed about his mother’s safety.  After returning home he recruited one of their sisters as an ally and the two of them began in earnest to enlist the family’s help to convince Mom to move north.

The general consensus was that if Mom would agree to the move, our hometown was probably the best choice because of the proximity of family members. In addition to David and me, our three grown children lived in the area, as well as one of Shelley’s sons. Shelley and Sandy each lived about two hours away, and it was expected that Scott could fly in easily. We anticipated that they would all make frequent visits.

What to Do about Mama? p.9

Initially, my mother-in-law moved into an apartment in a supportive independent-living retirement community in our town. We had an expectation, based on prior discussions, that Mom’s move would afford his siblings the opportunity to spend more time with their mother. The sister who had advocated for her mother to move north visited monthly, but we were disappointed that the other two did not increase the frequency of their visits.  Still, the arrangement worked quite well for two years, until the inevitable crisis moment occurred, permanently changing the direction of our lives—both ours and hers.

David’s and my decision to take Mom into our home was based on two main objectives: first of all, to end the cycle of injury, hospitalizations, and nursing home stays; and secondly, to help Mom meet her goal of seeing her last grandchild graduate from college. Additionally, since I worked at Aging, I had been living a life filled with old, sick people both on and off the job. In retrospect, I guess that didn’t change.

What to Do about Mama? p.12

Adjustments were required, and adjustments were made, but altogether we had another good two years.  But then, as is inevitable, my mother-in-law’s health began to disintegrate, taking family relationships right along for the long downward slide. Why?  Because of resentment. 

I began to harbor hard feelings toward my in-laws—because they were unwilling to make sacrifices anywhere near the level we were making.  And of course, the resentment was not one-sided.  We had a family meeting, but my husband’s siblings reacted defensively and angrily–their resentment probably stemming from guilty feelings.

Worst of all, when caregiving became increasingly more difficult, to the point of being unmanageable, it became requisite to mitigate new deficiencies on an almost daily basis.  It was then that my mother-in-law expressed her resentment by saying, “Everything is for your convenience!”  It was all downhill from there. 

Going into the arrangement, I thought we did a lot of things right.  But ultimately, we had made too many assumptions and had received too little commitment.  Our expectations had been unrealistically high.

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. Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.

What to Do about Mama? p.40

 


CAREGIVING: It’s Never Easy

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

Difficult Conversations

How to Handle Difficult Conversations

I read with interest the November 21, 2020, Caregiver Space article, “How to Have a Difficult Conversation,” by Adar Cohen (Edited by Lucy Foulkes).

See:  How to have a difficult conversation | The Caregiver Space

Family communications was a frequently addressed topic addressed in What to do About Mama? (Barbara G. Matthews and Barbara Trainin Blank).  It was difficult in my own caregiving experience, as well as in many of the other caregivers who made contributions to the book. 

“Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs.”

What to Do about Mama? p. 152

The article suggests that avoiding difficult conversations only fosters more conflict, and that caregivers should aim for a shared understanding. A synopsis of the article follows, interspersed with relevant excerpts from What to Do about Mama?    

“It is optimal for everyone involved to get together to talk openly, to listen, to divide responsibility, to compromise, and to commit. And, in some families, this truly does happen. But a more frequent scenario is that as a need arises someone steps in to meet that need (often the one who has “always” provided support), and the others take a back seat or hands-off approach.”

What to Do about Mama? p. 154

When Mediators help people have difficult conversations, they aim for one of three outcomes:

  • A solution:  a grand bargain, a resounding win, a comprehensive solution expected to withstand the pressures of future challenges.
  • A plan:  more realistic; like a map for finding a solution; open-ended but with a path forward; establishes new boundaries, revised norms, and shared expectations.
  • An understanding:  the most realistic outcome, especially at the beginning, is to focus on reaching an understanding; a new awareness of the other person’s experience; a mutual appreciation for one another’s needs;  can lay a foundation for a plan, a solution and a new relationship.

“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety—or whether you place equal weight on both. Establish common goals. Divide responsibility based on the strengths and abilities each of you brings to the family.”

What to Do about Mama? p. 155

The following techniques from an expert mediator are guides to help you do this without the mediator. It is a way to create the conditions in which people feel heard and acknowledged.

  1. Prepare for the conversation: imagine you just finished having the best possible conversation where each of your concerns was addressed to your satisfaction.
  2. Dig out a gem:   What would you say to them in this moment? Your statement should be an authentic expression of how you’re feeling but should also have significant meaning and positive impact for the other person.
  3. Ask yourself if you’re ready:  Are you willing to risk make the statement?  Although making a gem statement can create temporary discomfort, benefits are lasting and profound.   
  4. Phone a friend and tell them the following four sentences:
    #1 The biggest emotion that I’m feeling toward the person I need to have a difficult conversation with is…
    #2 The biggest emotion that I expect the person is feeling toward me is…
    #3 The gem statement I will make to them is…
    #4 My hope for the conversation is…
  5. Start the conversation (in person, by phone, or by video) by stating your gem, immediately followed by: “I say this because I think if we both really try, we can work this out.”
  6. Listen and talk. Remember your purpose.  Try to achieve understanding, even if it falls short of a solution.  Remember that just as you need to be heard, your counterpart needs to be heard too.
    *Minimize arguments, foster empathy, describe your experiences and emotions, do not list your
    counterpart’s mistakes and faults.
    *Filter your grievances: Stick to your top three grievances so as not to tax your counterpart’s ability to
    absorb and respond to critique.
    *Look back at the fill-in-the-blank sentences you read to your friend and see if there’s anything more or different you’d like to share.
  7. Close the conversation. Ask one another to identify what has changed as a result of this conversation. Remember that your goal is to understand each other.

“What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions.”

What to Do about Mama? p. 16

I think it is important to note that despite all your best efforts, you cannot always orchestrate the outcomes you wish for.  You make your own choices–you cannot control those made by others.  In my own caregiving situation, we enlisted the support of a mediator, which helped to achieve current goals.

“If you do not want to handle the caregiving responsibility alone, and if the family cannot come together in agreement, you may need to seek professional intervention.”

What to Do about Mama? p. 158

However, sometimes you’re caught in a recurring family pattern that causes pain and drives you away from the people you have loved. Once again, you may come to the point where you have to make choices—even if they are disappointing.    

“What if family mediation is, once again, an unsuccessful endeavor? There could be healing someday if you and your siblings find your way to let go of grudges. But you may also have to learn to accept that sometimes relationships are broken beyond repair, and it’s just not your job to fix them. Whereas childhood relationships with brothers and sisters are involuntary, maintaining them in adulthood is not. We are entitled to choose ‘not’.” 194

What to Do about Mama? p. 194

Family love, support, and sharing

Easy Living December 1, 2020 Article: You Are a Great Daughter and These Examples Prove It!

You Are a Great Daughter and These Examples Prove It! – Aging Parents (easylivingfl.com)

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.”

  1. You call your Mom to check in on her.
  2. You call her just to say hi. Or, you call to ask her for advice.
  3. You tell your parents you love them.
  4. You cook meals, grocery shop for them, or send them meals.
  5. You respect your parents’ wishes or statements that they don’t need help.
  6. You’re there if they do.
  7. You listen.
  8. You share happy memories with them.
  9. You send Mom a text or note to let her know you’re thinking about her.
  10. You teach your kids Mom’s best recipe.
  11. You share stories about your parents with your kids.
  12. You investigate resources that might help…even if they’re not ready for them yet.
  13. You read a lot of articles about aging and senior health or study up on Mom’s health issue.
  14. Your parents talk about you proudly to their friends.
  15. Mom calls you for input. Or, calls you just to talk.
  16. Dad asks you to help him figure out his Medicare plan.
  17. They love coming out to see your kids’ games or performances, or just hearing about how they’re doing.
  18. They ask you how you’re doing, they still worry about you too.
  19. They tell you stories and share bits of wisdom.
  20. 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.
Image result for family games clip art

Excuses Used to Avoid Caregiving–Revisited

 

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.

Gratitude by Caregivers and for Caregivers

HOW THE POSITIVE EFFECTS OF GRATITUDE REDUCE CAREGIVER STRESS DailyCaring, October 2020

https://dailycaring.com/how-gratitude-helps-you-reduce-caregiver-stress/

This DailyCaring article discusses how gratitude is proven to reduce stress—from the point of view of CAREGIVERS having gratitude saying: 

  • Practicing gratitude can make you happier, lower stress, protect you from depression, help you sleep better, boost your immune system, and improve your relationships.
  • Practicing gratitude doesn’t mean ignoring negative feelings or bad things in general, but recognizing the positive in your life, which is not terrible 100% of the time. 

The article points out the benefits of recognizing the positive effects of gratitude:

  • It helps you become more optimistic and improves your overall attitude,
  • It helps you to respond in an optimistic attitude more naturally. 
  •  It helps you focus on what you do have rather to avoid getting sucked into negativity. 

The suggested method of practice gratitude is to keep a journal. 

This is all well and good.  But I must also suggest that care receivers and the other family members remember to show gratitude to the caregiver.  Nobody is perfect in caregiving situations.  Everyone gets cranky or critical and makes mistakes.  But acknowledging the caregiver for their efforts goes a long way. 

My husband and I were frontline caregivers for his mother for seven years.  After she began to suffer recurrent falls, hospitalizations, and rehabilitations, she moved into our home.  I quit my job and became her fulltime caregiver.  This arrangement went well for the first two years, but then the inevitable decline began again, and the caregiving arrangement became increasingly difficult.  My attempts to mitigate increasing needs were not well-received. 

“Everything is for your convenience!” David and I tried to talk to her about her feelings, but I ended up leaving the room. I was really angry about her remark. I was sinking under the weight of caregiving, trying to find solutions to problems, and was accused of doing things for my own convenience!

What to Do about Mama? pp. 21-22

For me, the greatest difficulty was the language used by my mother-in-law and Sandy, describing me as “selfish.” I could understand “obnoxious,” but “selfish” was unfair and demoralizing and totally undermined the progress we had made.

What to Do about Mama? p. 28

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. She proceeded to tell me that, although David and I provided Mom with very good physical care, the emotional care we provided was terrible; in fact, it “sucked.”

What to Do about Mama? p. 26

When my health had declined to the point that I needed two knee replacements, arrangements were made for my mother-in-law to move in with her daughter. I felt that I had not lived up to the commitment I had made, which was caused me a lot of anxiety.  The Hospice Spiritual Advisor gave me an assignment, which is a great example to illustrate the theme of the DailyCaring article How the Positive Effects of Gratitude Reduce Caregiver Stress.

Blessings of Mom Living in Our Household

• Example set for our children. Our youngest daughter said, “Thank you, Mom, for taking care of my Grandma and being such a good example for me.”

• The grandchildren have had an opportunity to know and love Great Grandma. This was in contrast to Shelley’s comment that they really didn’t see their grandparents much growing up.

• I was able to give my mother-in-law the gift of my children and grandchildren. I am proud of the love, support, and appreciation they show her.

• I had the opportunity to demonstrate to my mother-in-law and siblings-in-law my appreciation for being a part of their family since I was eighteen years old. I was also able to show thanks to my parents-in-law for providing support in our times of need. Most of all, I was able to show gratitude for their assistance and encouragement in helping to provide our children with their college educations. This was to be my gift to my all of my in-laws.

What to Do about Mama? p. 35

Image result for caregiver gratitude clip art

It’s too hard to see her like that

Image result for old person near death clip art

The Imperfect Caregiver by Bobbi Carducci:
Caregiver You Are Not Alone: Thomas’ Story

“When family members opt out of helping care for someone it’s not unusual for them to say, “It’s too hard to see him or her like that.”

This Common Experience Was Our Experience, Too

My husband’s brother initiated the idea of their mother moving from Florida to live closer to family. He and his wife did not, however, want the responsibility of being her caregiver, so she moved to our town. Later, I became her primary caregiver when she moved into our home. When Mom hit the slippery slope of physical decline, my sister-in-law excused her husband from visiting frequently saying, as above, “It’s too hard for him to see her like that.”

“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. During that
same conversation, his wife also made this comment: ‘My priority
is my children. I am only a daughter-in-law.’ I was amazed.”

What to Do about Mama? p. 20


Setting personal boundaries in caregiving

Are you feeling that caregiving is ruining your life? Listen to the podcast: Caregiving Ruined My Life – The Caring Generation®
by Pamela Wilson   | Sep 15, 2020 | 

https://pameladwilson.com/caregiving-ruined-my-life-how-to-take-back-your-life-the-caring-generation-radio-program/

In this podcast Pamela Wilson speaks to an unspoken belief of many caregivers: “Caregiving Ruined my Life.” 

Although I never thought or felt about caregiving exactly in these terms, I guess you can say I came close.  Because caregiving had drained me, both physically and emotionally, my thoughts ran more along the lines of: “I squandered the last best years of my life.” 

As part of the process of regrouping after caregiving, I wrote What to Do about Mama? I wanted to share insights about what I learned.  I wanted pre-caregivers to know beforehand what they were getting into.  I wanted current caregivers to have more tools to work through the inevitable hurdles.  I wanted to give post-caregivers encouragement that there is life after caregiving, and more importantly, how to avoid burdening their own children with the same degree of responsibility.   

Wilson states that many caregivers even feel that caregiving almost killed them, and I can personally attest to the truth in that statement as reported by those caregivers who submitted their stories for inclusion in What to Do about Mama? 

“My overall caregiving experience has nearly killed me.” (Katrina’s Story)

What to Do about Mama? p. 105

“At times, I have felt her suck the life right out of me.” (June’s Story)

What to Do about Mama? p. 144

Wilson affirms that caregiving can be rewarding, meaningful, and joyous, but goes on to say: “Let’s be realistic.” Caregiving might be the most difficult responsibility you will ever accept. Few family members report raising their hands to volunteer for the job. Many caregivers feel they had no other choice, because nobody else stepped up to offer help.

Following are ten ways caregivers can take back their lives, according to Pamela Wilson.  I have listed them along with my affirmations and rebuttals, noted in red. 

  • Tip #1: When elderly parents are adamant about refusing help, stop pushing. Set boundary lines.  Learn how to take back your life one step at a time. You’re not going to abandon your parents, but you may also not be that caregiver who loses your life when your parents’ lives fall apart. In the beginning, we felt guilty that my mother-in-law had been pushed into moving closer to family.  As front-line caregivers, we accommodated her every need.  Later, when her needs increased, she moved into our home.  Eventually I began to set boundary lines which were not well-received.  I was told everything was done for my convenience and that I was selfish. Boundaries are of critical importance.  They are not a magical solution.
  • Tip #2:  Manage your work-life balance while honoring your sense of duty.  Hire in-home caregiving aides, consider other supportive living arrangements such as assisted living facilities, avail yourself of available community resources. We did not hesitate to enlist Hospice services.  They helped my mother-in-law live life to the fullest, even traveling by plane to a granddaughter’s college graduation.  She was on Hospice for two years.  It’s a fallacy that the patient must be on his or her deathbed before receiving Hospice services.
  • Tip #3:  Not all families get along. The longer you continue being “the caregiver”, the longer the problem will persist.  Develop a plan to take back your life–and follow through.  Your relationship may suffer, but if you become emotionally and physically drained, your resentment will grow, and family relationships will suffer anyway.  Don’t allow this burden to become solely your problem. We had a family meeting and thought we had an established plan.  Near the end, it took a family mediation before expectations were met.  Don’t undertake a commitment based on assumptions. Draw up a concrete and specific plan of how everyone can and will contribute.  Sign, date, and revisit the plan often so that it will continue to meet growing needs.  Again, your relationships may suffer, but is better than the following.
  • Tip #4:  “Caring for my elderly mother is killing me.” Acknowledge it and then take your life back. There is life after caregiving. (But that doesn’t necessarily mean you can turn back time.)
  • Tip #5:  If something is making you sick, acknowledge the impact of caregiving stress and having to shoulder the brunt of the burden. While caregiving, I contracted the shingles.  Fortunately, they weren’t too bad.  Stress related?  I believe so.  I also damaged my knee while squatting down to tend my mother-in-law’s skin tears.  The knee(s) deteriorated to that point of needing replacements and ended my caregiving responsibility.  My mother-in-law moved from our home to her daughter’s and lived one more month.  
  • Tip #6:   It’s frustrating when people say, “Call me if you need help” and are then not there for you when you need them. Well, sure.  But sometimes the caregiver needs to follow through with asking and to be specific in their needs.  And sometimes, the parent is resistant.  My husband and I used the services of a Friendly Visitor from Hospice so that we could have a “date night.”  I would have dinner prepared so that my mother-in-law could feel that she was entertaining a “guest” rather that feeling like she required a babysitter. 
  • Tip #7:  Caregivers who stop working to be full-time caregivers, don’t foresee that caregiving work will become all-consuming, isolating, and depressing—often their only outside social and mental activity. It can impact you financially, mentally, and physically. Anticipated months can turn into years.  Consider the potential impact ahead of time. When my mother-in-law moved in, I emphasized that I wanted to maintain time for my daily walk. Because we all valued her ability to have social contact, I would take my mother-in-law to the senior center twice a week to play bridge. After she was settled there, I would hightail it over to Curves for a workout and would then proceed to one of my daughters’ homes for a visit with grandchildren. Fortunately, everything was in a fifteen-minute radius of here and there. This became my primary survival technique—a real win-win situation. 
  • Tip # 8 Most families don’t give enough prior consideration to the challenges of living with elderly parents. Parents and children have different lifestyles, and this decision changes lives forever. It’s not easily reversible. Separating is like getting a divorce. Feelings are hurt when a caregiver says, “I can’t do this anymore.” I worked at the Area Agency on Aging and had a lot of experience visiting families and observing various caregiving models, and we definitely gave this a lot of thought.  But even after knowing someone for 40+ years, there are still surprises.  As an in-law, I found out more about my mother-in-law that I ever wanted to know, and I’m sure she felt the same.  When it came to the point that she had to move out of our home she said, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.” (What to Do about Mama? p. 32.)  Talk about guilt!
  • Tip #9 If you made the decision to give up a full-time job and live with elderly parents, you may have a great deal of apprehension and fear about getting back out there. I did give up a full-time job, but since I was able to retire, this was not a big problem for me.  It is common for caregivers to feel, “What now?” when caregiving ends.  I bypass that one, too, probably due to my status as a daughter-in-law, and also because I was focused on having bilateral knee replacements and going through rehabilitation. 
  • Tip #10: Caregiving is a marathon—not a sprint. It doesn’t end quickly. Every choice that you make might be questioned by your family members. You will be judged for helping too much, not helping enough, for being selfish, for expressing your feelings. Whatever happened to the idea of enjoying life while you’re young? This was our experience exactly.  Caregiving needs can develop suddenly.  When “the crisis moment” occurs you often find yourself woefully unprepared.  Bottom line for the siblings is:  “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”

See Chapter One in What to Do about Mama? Expectations and Realities of Caregiving for my complete caregiving story. The following excerpt is a summary of the experience.

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.

What to Do about Mama? p. 39

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.

Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.

What to Do about Mama? pp. 39-40

Rethinking End of Life Care

End of life.  While we all know that it’s coming—someday—it is something we tend to ignore, until the moment it gets right up in our face and we can deny it no longer.

Snubbing death has become a real challenge in the midst of the pandemic.

I learned to deny death early on in life.  Because of that, there is still within me the lasting impact of unresolved childhood grief.  The death of my father, with all its surrounding circumstances, probably had the greatest formative impact on who I grew up to be. 

“Daddy went away, never to return home. No last phone call. No last touch.”

An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 95

So as a young adult I made a purposeful change to be candid and straightforward.  This is the person I became; it does not always serve me well. 

I am now in my seventh decade and find myself confronted by loss with increasing frequency.   The thought of losing those who I love without the opportunity to see them again or even to say goodbye has intensified from fear to terror due to the coronavirus. 

I encourage all of you to rethink your attitudes about end-of-life care and death before you find yourself in the situation where there is no going back. 

11 Inspiring Quotes to Help You Rethink End of Life Care by Easy Living, August 31, 2020

This excerpt refers to quote NINE below:
Because the extent of his illness had been kept from him, so many other opportunities were lost. I am quite sure there was much more that he would have liked to say to help guide me into adult life. As it was, he didn’t even have the chance to say, “Goodbye.”

An Unremarkable and Imperfect Grandma (Life Stories and Life Lessons) p. 111

  • ONE:  At the end of your life, you will never regret not having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, or a parent—Barbara Bush
    No matter what your life stage there is benefit from thinking with an end-of-life mindset.
  • TWO:  In the end, it’s not the years in your life that count. It’s the life in your years—Abraham Lincoln
    “Quality of life” is vital to end of life care.
  • THREE:  It’s not what you have at the end of life, it’s what you leave behind that matters—Stedman Graham
    What legacy will you leave behind?  How will you be remembered?  What values did you impart?  What impact did you have on others?
  • FOUR:  Our worst fear isn’t the end of life but the end of memories—Tom Rachman
    How will we be remembered?  Make memories loved ones will cherish.
  • FIVE:  I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end—Gilda Radner
    Life does not always go the way we want.  Unpredictability is both the struggle and the beauty.
  • SIX:  In the beginning of life, when we are infants, we need others to survive.  And at the end of life, we need others to survive.  But here’s the secret, in between, we need others as well—Morrie Schwartz
    We neglect to consider all the ways we need others throughout life and all the ways we are needed, even as we near the end of life.
  • SEVEN:  Culturally, now, we’re really tight around death, and as a result I think people miss out on a lot of the beautiful aspects of the end of life process that can be very helpful for the grieving process, that can be a really beautiful part of transition of life that we don’t get to experience because it’s not in the conversation—Chrysta Bell
    When we avoid talking about end of life, we deny ourselves the opportunity to be involved in our end of life care. Confront what is happening.  Talking about your feelings and making your preferences known benefits both you and those around you.
  • EIGHT:  Have a conversation with your family about your end-of-life wishes while you are healthy. No one wants to have that discussion… but if you do, you’ll be giving your loved ones a tremendous gift, since they won’t have to guess what your wishes would have been, and it takes the onus of responsibility off of them—Jodi Picoult
    Or: “End of life decisions should not be made at the end of life.” Give your family the gift by planning ahead and sharing your wishes for end of life care.  If you wait until the crisis is upon you, it may be too late for you to express your wishes.
  • NINE:  Having the choice at the end of my life has become incredibly important. It has given me a sense of peace during a time that otherwise would be dominated by fear, uncertainty, and pain—Brittany Maynard
    Choice is vital in end of life care. A sense of choice through advance care planning helps reduce fear and uncertainty and gives peace.
  • TEN: You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die—Cicely Saunders
    In trying to deny or hide from death, too many miss out on the palliative care available for better living during the process of dying.
  • ELEVEN:  The end of life deserves as much beauty, care, and respect as the beginning—Anonymous
    In summary of end of life care.

This excerpt refers to Quote TEN above.
A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living. 

What to Do about Mama? p. 171


Sibling Rivalry and Caregiving

The article Getting Along to Care for Mom by Barry J. JacobsAARP, really hit home in our household. 

https://www.aarp.org/home-family/caregiving/info-07-2013/family-siblings-aging-parents-jacobs.html

My husband and I were caregivers for his mother for seven years when she moved from Florida to our community in Pennsylvania and later into our home. Because I had had a historically good relationship with my husband’s family, I never anticipated that caregiving would weaken the rapport we had developed for over 40+ years.

Barry Jacobs noted several ways that caregiving impacts sibling relationships, and although the specifics of our stories sometimes differ, the generalities are the same. Jacob’s observations are in black, ours are in red.

  • Sibling disagreements created resentment that caused long-term damage to family relationships.
    We thought we had established a cooperative plan of shared-responsibility, but two of the four siblings did not meet agreed upon expectations.
  • Caregiving relationships can become strained.
    Although their brotherly relationship had already declined in adulthood, with caregiving it devolved into estrangement. A good relationship with a sister also became strained to the point of estrangement, but fortunately it has been mended.
  • Attitudes about level-of-care needs can differ. My husband’s brother and sister-in-law were the most insistent that their mother could no longer live independently, but it was also they who were the least-willing make sacrifices or provide care. 
  • Disagreements replay old childhood dynamics.  Repressed childhood resentments were the root of the adult conflict that began to surface when my husband left home to go to college.  The resentment became toxic decades later after their mother died and the estate was being settled. 
  • The dynamics created by birth order still had an impact.  When growing up, there was a definite pecking order in my husband’s family based upon the siblings’ age and sex.  This dynamic played out again in adulthood when my husband’s mother named him Executor of her will near the end of her life. 
  • Pulling together to care for a parent(s) makes some adult siblings draw closer together, but many sibling disagreements about needs and how to share responsibility create resentments that sometimes simmer, occasionally explode, and invariably cause long-term damage. As caregiving needs escalated, my husband and I called a meeting to re-clarify our expectations for all four siblings to honor their commitment.  After the meeting, resentment grew, leading to family mediation, which was conducted by the hospice spiritual advisor.  There was begrudging agreement and follow through until the end.  But after their mother died and the estate was being settled, there were financial accusations, the repercussion of which was long-term resentment and estrangement. 

 Again, visit https://www.aarp.org/home-family/caregiving/info-07-2013/family-siblings-aging-parents-jacobs.html for tips about:  How to Share a Caregiving Role with One or More Siblings.”