Burnout Blues

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Have you ever sat in a coffee shop and “overheard” a neighboring conversation? If that is something you like to do, but feel guilty about eavesdropping, tune into the Jen and Joji Podcast.
Jenn and Joji Podcast
https://www.spreaker.com/user/15265580/episode-4-burnout

Here you will hear the chitchat of two (Millenial?) friends as they share their thoughts about a wide variety of topics, such as perfectionism and sobriety. The podcast I chose was BURNOUT, and although they largely spoke in general life terms, the conversation touched on and applied to the specific topic of CAREGIVING.

Jenn is an elementary school teacher whose entire nuclear family–both the spouses and their two young children–are overcoming a bout with coronavirus. Jenn noted that they now have SUPER ANTIBODIES. Jenn expressed that their COVID experience was like a “mini 2020” because of their return to quarantine status.

Joji is a nurse who had just experienced an overwhelming week, which consisted of work (an unusual 5-day shift) in conjunction with a week of caregiving (a responsibility she and her siblings share on a rotating basis). By Friday she felt like she was hitting a wall, noting that it felt like a train was barreling down on her that could not be stopped.

Respite care helps caregivers avoid burnout by taking time away from the senior-care environment. It helps prevent the depression that develops when caregivers do not make time for a well-rounded personal life. Again, respite care falls within the realm of family responsibilities and provides another good opportunity for friends or volunteers to help. But if these resources are not available to you, paid services are accessible in-home through independent caregivers and home-health agencies, or out-of-home at assisted-living or nursing-home facilities, adult day centers, and family respite-care homes.

What to Do about Mama? p. 184

These experiences led Jenn and Joji to talk about burnout and how to cope. They touched upon the following:

Signals of burnout:

  • Losing patience and being bothered by the “little things”.
  • Turning to alcohol, rationalizing that you “deserve” it, then feeling worse afterwards.

Self care as a ways to deal with burnout:

  • Use positive self-talk that does not assign an emotion to your feelings.
  • Acknowledging that you are burned out and taking time to “pause”
  • Learning to let go and not expecting yourself to be “perfect”
  • Establishing basic healthy habits (such as eating right, exercising and getting enough sleep)

Relationships and asking for help:

  • AT HOME
    From your spouse and children (it’s a good way for them to learn independence)
    From your siblings (as in sharing the responsibilities of caregiving)
  • AT WORK
    From your Boss and Co-workers.
    Remember you are a TEAM


Most importantly:

“I learned how to say, ‘NO,’ in addition to knowing when to say, ‘Yes.’”

What to Do about Mama? p. 267


Cancer and Chemotherapy during COVID

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.


Confessions of a Caregiver

Caregivers—do you sometimes think horrible thoughts that you are uncomfortable sharing with others (except maybe with an online support group)? Or maybe you have simply blurted out something terribly inappropriate and then thought, “I can’t believe I said that!

Well, I have. (More on that in a minute.)

That is the topic of Pamela Wilson’s September 15, 2021, podcast “Wishing a Sick Parent Would Die

If you are not a caregiver you might be shocked if you were to hear a caregiver say they wish a parent would die. You might wonder how someone could possibly feel or think this way to the point that they could utter such words.

It’s easy to be judgmental, and challenging to be empathetic—especially when you don’t fully understand the daily life of caregivers. THE OTHERS–they just don’t get it. Because of what is called experience gap there is a lack personal insight when you are not experiencing caregiving on a full-time basis. 

So, click on the link below to listen to the Caregiving Generation podcast. You will gain broader understanding and new perspectives whether you are a Caregiver or a family member who may not “get it” and are therefore, in need of education. 

Wishing a Sick Parent Would Die – The Caring Generation® (pameladwilson.com)

My less-than-stellar Caregiver Comment Confession:
“I have no desire to touch your mother in that way, and at times
I can hardly even stand to see, smell, or hear her around me.”

During the family meeting Sandy had said that seniors become more childlike, more egocentric. She expressed strongly that Mom would benefit from being touched. She expected hand-holding and hugging and suggested that I do that more. I could see that my very frank and harsh reply shocked her. “I have no desire to touch your mother in that way, and at times I can hardly even stand to see, smell, or hear her around me.” I couldn’t believe the sound of my own words, which were much worse than their actual meaning—that there was no getting away from Mom’s presence, even when she was visiting someone else. I think those words finally got through to Sandy—that the emotional turmoil we had been through the past year had reached the point that it was imperative to find a resolution to the growing problems. I moved on from being disappointed and angry; I was now distraught.

What to Do about Mama? pp. 17-18


Caregiving: Facing the facts

    

As I began to glance at Pamela Wilson’s Sep 22, 2021 Podcast:  Hard Truths About Caring for Aging Parents – The Caring Generation® the hard truths started jumping out at me right and left.  I had learned about many of those hard truths the hard way—by first-hand experience
Hard Truths About Caring for Aging Parents – The Caring Generation® (pameladwilson.com)

In this blog post, I will identify some of those hard truths and then share how they impacted my own caregiving experience and how I anticipate they will impact me and my family in the future.     

  • Decide how much interaction you want with your parents throughout your life. The decision to remain living in the same town as your parents or move away affects caregiving responsibilities later in life.

This decision is not always yours to make. Both my mother and my husband’s parents chose to move away from us when they retired to Florida.  My mother and my father-in-law both died suddenly; there caregiving needs were never very great.  My mother-in-law, however, had a goal of living to 100 and did her best to accomplish that goal, despite having a number of serious health conditions. When she became unsafe living on her own, she moved closer to us.  My son and two daughters were all married with families, but they always found time to be supportive of their grandmother.  When her caregiving needs became much greater, she moved into our home with me as her primary caregiver.  My children continued to be supportive. (My mother-in-law died just short of 90.).    

Although my husband chose not to move away from our children, our older daughter and her spouse decided to relocate from our hometown when their kids were old enough that they no longer needed as much family support.  Since then, she made it clear she does not intend to be a caregiver. Her younger sister thanked me for being such a good example when I cared for her grandmother.  I certainly encourage the children to be supportive of each other when the time comes that we may need some help. 

  •  Be aware that life cycle transitions affect the timing and care of aging parents.  Few children expect to spend their retirement years caring for aging parents. Still, many retired adults become caregivers—if not for a spouse, then first for aging parents.  Caregiving responsibilities often pass from one generation to the next.  Although some families may believe in the responsibility to care for aging parents—is there another way to make sure parents receive care and you are not the only caregiver?  There isn’t one right or wrong way, but one solution is for families to think about caregiving differently, from a whole-family perspective that take lifecycles into account:  having and raising children, caring for aging parents, caring for a spouse, and caring for the caregiver.
  • Family culture has a strong impact on how families handle the issue of caregiving.  Is the family individualistic, believing in self-sufficiency or collectivist, setting aside individual achievement to work toward the good of all in the family? Does the family talk openly about the unpleasant realities of life and death?  Some elderly parents may refuse to talk about legal planning or burial plans, whereas some adult children find talking about the death of a parent too emotionally traumatic.  A family generally benefits if they can discuss sensitive topics openly as a recurring topic instead of a subject of hesitation and disagreement.

This was one of the biggest challenges when I was my mother-in-law’s caregiver. As one sister stated, “We never talked about anything.  We just moved on.”  When we came to the point that I was coming to a point of resentment because of their comfort with my assuming the role, which diminished their need for sacrifice, I forced the issue by insisting on a family meeting and requesting greater shared responsibility. Although that eventually led to more involvement, it also led to hard feelings that still exist ten years after my mother-in-law passed away.  Setting boundary lines increased their participation and helped rid me of resentment, but I also think that it increased theirs—but there are times that difficult decisions must be made in order to avoid even greater consequences.

  • Caregiving and care costs affect family income.  It’s important to have conversations about the cost of caregiving ahead of time.  Potential caregivers need to consider how it will impact their educations and careers.  If you don’t talk about caregiving ahead of time, you will find yourself learning after you are embroiled in the role.  Often families move in together to provide care for an aging parent with the thought of saving money.  Too frequently, however, when a son or daughter gives up their job to be a caregiver, they become financially strapped.  Sometimes caregiving appears to be an opportunity to escape from a job or a boss you hate.

Because I quit my job when my mother-in-law moved into our home, she paid the mortgage (equitable to the cost of her apartment in the independent senior living facility where she had been living) because that is what my salary had covered previously.  She also named my husband as her life insurance beneficiary to compensate for the loss of social security and pension monies from my early retirement.  Although my husband’s siblings had agreed to the arrangement ahead of time, it did not seem to settle well with them when the estate was settled. 

  • Caregivers often give up or trading parts of their lives to care for aging parents.  Should you?  For how long?  The cost is great when you were the only person to step up. 

Today, as I age and my health declines, I often feel that I squandered the last best years of my life as my mother-in-law’s caregiver.  At those points my counterpart sister-in-law’s comment comes to mind: “My priority is my children. I am only a daughter-in-law.”  What to Do about Mama? p. 20

  • A lack of planning affects family relationships. When there is no planning because the topic of caring for aging parents is something no one wants to talk about, unpleasant and unwanted decisions are not avoided.  Caregiving becomes a process of action and reaction that elicit a response only when serious concerns are manifested, or a crisis moment occurs.  Ripple effects are then created that affect every generation in the family.

A few years ago, both my daughter-in-law and my son-in-law’ mothers were diagnosed with cancer.  The first family spoke openly of the diagnosis.  She opted not to undergo treatment and after five months, passed away. 

“There was all this anticipation of need when the diagnosis came, but that need did not actually manifest itself much until the last few weeks of my mother’s life. She was fortunate to live comfortably until then, and was indeed in decent enough shape, that she was still making coffee for my dad every morning, up until those last few weeks. Our help for her was largely emotional support and keeping true to her wishes of spending as much time with family as she could. My mother waited until she’d checked the last items off her “To Do” list—a granddaughter’s birthday, a dance recital, and Dad’s hemorrhoid surgery—and then she stopped eating. She passed away on Father’s Day, surrounded by her husband and children who loved her so.” What to Do about Mama?  P. 280

When I offered my son-in-law a copy of “The Conversation Project” which encourages dialogue between parents and children, he was angry with me, calling me “insensitive”.  His mother opted for treatment, but sadly, the result was the same.  Without going into the details, I think it would be accurate to say that her experience was in many ways, quite different that the one described above. 
https://theconversationproject.org/

  • It’s never too early to make a plan.  Consider how caring for a parent will affect you, your marriage, your family, and your career.  There are times when you must make difficult decisions in order to avoid even greater negative consequences.   

I found from personal experience that Caregiving isn’t a short-term project.  It can go on for a year, three, five, ten, twenty, or more.  If you are proactive about making choices for on-going care you may avoid the caregiver burnout and frustration—the sources of emotional stress that can cause one’s health to decline.  I know it did for me. 


Resentment and Caregiving

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

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

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?


Caring for your spouse

I was finally able to visit my brother and sister-in-law after COVID thwarted my best-laid plans for frequent visits.  Since a diagnosis of Lewy Body Dementia, their lives have changed about as dramatically as one can imagine, but they are both working hard to get through this together day-by-day-by-day. 

I was a caregiver for my mother-in-law for seven years, four of them fulltime in our home.  I often refer to that experience when discussing caregiving. After one such comment, my sister-in-law said, “Caregiving for a spouse is different.”  I know that this to be true.  (I also know there are similarities and differences in all caregiving situations.)

 Lewy Body impacts both the body and the mind.  It, along with a whole host of other infirmities, can and does redefine a relationship.  And especially with dementia there’s an ultimate sense of having lost your loved one twice. 

The March 2021 Guideposts article “Spousal Caregiving:  5 Ways to Keep Your Marriage Strong offers good advice—albeit it may take some creative thinking to apply the suggestions to your particular situation. The overall message is to make time to enjoy each other in ways that go beyond caregiving needs.   

Spousal Caregiving: 5 Ways to Keep Your Marriage Strong | Guideposts

  1. Redefine marital intimacy.
    Savor physical touch in many forms that demonstrate caring and make each other feel good. I used to give my little one “lotion parties” after their baths.  Try it with your spouse – you might like it! (And don’t forget those feet!)
  2. Fall in love with different personality traits. 
    I noticed how aware and concerned my brother is that his wife takes time for herself.
    Don’t forget to appreciate your caregiver!   
  3. Find new things to bond over.
    Go through those boxes of pictures and pick out the best photos to relive and document your travels.
  4. Renegotiate your roles.
    Identify those tasks you have to do.  For example—you must eat.  Daily routines can be a chore.  Care Receiver—can you make up a menu for one breakfast, one lunch, and one dinner for the week?  Choose some simple new recipes to make and help as you are able—even if that means just reading the recipe to the cook, one step at a time. 
  5. Celebrate your anniversary.  Enlist your family to help out—I’m picturing a special meal ala JH, MH as hostess, AH as garcon, and EH as entertainment! 

Just Say “NO”?

Setting boundary lines in caregiving relationships is important.  When a caregiver has a hard time saying NO the resulting stress contributes to caregiver burnout. 

The 4-22-2021 DailyCaring article 4 TIPS THAT HELP CAREGIVERS SAY NO WITH CONFIDENCE, recommends considering requests from friends and family carefully by asking yourself whether the request is really necessary, or if it can wait, be postponed, or declined.   Taking on too much obligation and allowing yourself to be overburdened by others is essentially self-defeating.

Click here to read article: 4 Tips That Help Caregivers Say No With Confidence – DailyCaring

My response:

I agree, and it’s an issue I address repeatedly in What to Do about Mama? Expectations and Realities of Caregiving by Barbara G. Matthews and Barbara Trainin Blank:

“We certainly could have set more boundary lines and lowered our bar of standards. The fact is, we could have made different choices and still provided good support for his mother—at least to a level more comparable with that of the other siblings.”

“Learn to say no when you can do so safely, and not lose yourself.”

“*Set boundaries
*Share responsibility
*Take care of yourself
*You must have something fun to do—DO IT and make time for yourself
*You must have something to look forward to. Have someone you can talk to and share your feelings with, laugh as
often as possible, and maintain friendships.” Jillian’s Story

“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.”

“Katrina began to establish boundaries. She took back her Saturdays and told her mother that she needed to make her own friends and participate in activities at the retirement community where she lived.”

“Understand and set personal limits: Look beyond the current situation and anticipate how the demands of caregiving will increase as the care receiver becomes more debilitated. Make sure you consider your ability to handle future burdens. Caregivers must know how to set boundaries and request support whenever they find they are unable to deal with a situation or challenge on their own.”

“I learned how to say, ‘No,’ in addition to knowing when to say, ‘Yes.’”

What to Do about Mama? pp. 18,130, 81, 256, 266, 267

A caregiver who constantly puts others above themselves risks real repercussions, including having to face other physical or mental health issues themselves. 

According to the DailyCaring article:  “Many caregivers are used to putting others before themselves and have a tough time saying no to additional requests for their time and energy. Following are four tips that help caregivers consider their own needs and well-being before saying yes out of habit.”   

  1. Create a calendar of your caregiving responsibilities.  This helps to clarify how much extra time you actually have to devote to others. It is a good visual reminder that you do not need to give up ALL your time.
  2. Schedule “me” time.  Your “me” time is a previous obligation to yourself—and there’s no need for you to explain!
  3. Decide what’s necessary and what is not. Block out the time for yourself without guilt. 
  4. Practice asking others for their help.  When you feel you are being consumed by caregiving and find yourself at a breaking point—learn to ask for help. 

Learning to set boundary lines was a lesson I learned well, as a caregiver.  How did those boundary lines work for me?  That depends on your perspective. 

It is important to realize that although you have control over the choices you make in life, you have no real control over the choices made by “the others”. 

When my mother-in-law complained to her daughter that I was taking her to get her nails done every three weeks instead of two, her daughter chose to email me with the request that I “accommodate” her mother in this very “small” way. 

When I accepted a Hospice respite weekend so that I could entertain weekend visitors in my home, another daughter chose to tell me I was being selfish. 

 When I explored new ideas with my mother-in-law about ways to adjust to her increasing needs, she chose to say to me “Everything is for your convenience!”

Were these the responses I was looking for?  No.  But saying “NO” and setting boundaries caused me much less resentment in the long run. 

Caregiving.  It’s Never Easy. 


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