Caregivers: Change and New Beginnings

Readers and Followers:

I’ve come to a point that I am ready for a reprieve from my involvement with caregiving–at least for a while.  I realize that this issue will one day reappear in my life in one form or another, so I will keep the door open to revisiting What to Do about Mama?  in the future.

I’ve noticed that a lot of bloggers just sort of disappear from blogging, and I don’t want to do that to you folks who actually read or follow my blog.             

The article:  New Beginnings Are Possible for Caregivers
(Home » Caregiver Support » Emotional Wellbeing » Articles » New Beginnings Are Possible for Caregivers ) by Carol Bradley Bursak struck me as relevant to my book writing and blogging endeavor.  When I read it, I asked myself the question, “How has caregiving changed me?”  So I’ve decided to address this topic in my “potentially” last blog post (at least for the foreseeable future).


Does caregiving change you—either while you are a caregiver or once your caregiving has ended?  I think caregivers would respond to that question in a variety of ways noting:

similarities and differences

positives and negatives


resignations about what is and possibilities of what can be


Why Not?





 SKIP TO:  “How I Have Changed since Caregiving”

SYNOPSIS:  In “New Beginnings are Possible for Caregivers,”  Carol Bursak states that:

  • The sameness of each day in your life as a caregiver can, at times, seem overwhelming and permanent.
  • New beginnings for caregivers are far easier to suggest than to accomplish, especially since fresh beginnings generally come after significant endings.
  • One route to finding what may be possible is journaling. Journaling can be a tool to examine where you were before caregiving, where you are now, and what you’d like your life to be if you could magically make it so.


Bursak goes on to say, “There’s something therapeutic about writing out how we feel and then reading the words that have come from our heart as well as our head.”


Now really…isn’t that what blogging is all about?

She then provides the following “loose guidelines” to structure your journaling:

Book one: vent your feelings and reinvent yourself

  • Section one of book one is for venting.
  • Section two is a place to note your caregiving routines
    and what you’d want to do differently if you could.  Blog4
  • Section three is for digging into your past. Blog7
  • Section four is about the future.
  • Section five is for dreaming.Blog5
  • Section six is for getting real.

Book two:  Brainstorm how to take back your life.


Book three: Express your gratitude

  • Remember that you’ve grown as a person who understands the needs of others.
  • Include self-forgiveness for being imperfect.

Express Your Gratitude

In all the books:

Face reality

Note your feelingsBlog10

Be honest with yourselfMulti-Ethnic Group of Diverse People Holding Letters To Form A Honesty

Bursak summarizes her article with the following:  “The reality of ongoing caregiving is that most caregivers won’t have spectacular new beginnings as long as they are in the caregiving mode. However, self-examination and self-forgiveness can lead us toward a renewed outlook on life. This, in turn, may lead us to examine the ways that we can have a richer existence, within the confines of our caregiving obligations. And yes, that does count as a new beginning.”


I share the article “New Beginnings are Possible for Caregivers,” because  for me…

Journaling helped:

to maintain my emotional health during caregiving

Blog9to write What to Do about Mama?


While I was active in a caregiver’s support group, one of the group leaders suggested to me that I keep a journal, a method found to have a positive impact on physical well-being as well as emotional health.

  • Writing about stressful events helps you to both face and deal with the situations that negatively impact your health. It knocks down the walls you have built so that you can gain understanding of yourself and your life circumstances.
  • Writing about the difficult problems and feelings helps you gain understanding of other points of view. It is an effective tool to help you resolve differences with others.
  • Writing about painful emotions helps decrease the power they have over you so you feel more at ease, able to move beyond the past and stay in the present.

“Scrolling” non-stop stewing

Although I did not follow the detailed journaling format described by Carol Bursak, it was  my dumb luck that most of the elements she indicated were applied—mainly by facing reality, noting feelings, and being honest. It was in this way that I was finally able to put an end to the incessant agonizing and SCROLLING I had been experiencing.

After my mother-in-law passed away I thought, “I have all this stuff; what can I do with it?”  So, I wrote a book. The journal account simplified the process. My objective was to use caregiver knowledge and experience to help other caregivers overcome, or at least minimize, common challenges.


  1. I experienced sudden and rapid physical challenges when my mother-in-law’s caregiving needs increased dramatically and family conflict accelerated.  I had bilateral knee replacements four years ago, but continue to work out daily in an attempt to stave off physical decline.
  2. I have healed through the cathartic process of writing a book, blogging, and speaking publically about caregiving.
  3. I have learned to accept that the dynamics of my husband’s relationship with his family have changed, and therefore mine have, too.  I understand that the past relationship was defined through his parents and they are now both gone.  I accept that it is my husband’s right to choose to “NOT” have a relationship, even if I find that choice to be incredibly sad.  I hold no grudges or resentment toward my husband’s family, and refuse to get mired down in feelings of being used or unappreciated.  Life does not come with a manual.  Everyone makes mistakes.
  4. I am preparing to leave my children in a much better place in regard to caregiving.  That does not mean that I am absolving them of responsibility.  I will not become stubborn or resistant to the “changing of the guard” that will come someday.  It’s just that I am preplanning and organizing so that they will not have to make difficult decisions alone or clean up my messes.  Although my husband refuses at this time to sell our home and move into a condominium nearer to our children, I am open to doing so, or even to living in a “mother-in-law house” on their property or having an “electronic tracking system” in our home.  (See the Patriot News article “Staying in Touch” The Patriot-News | Page A13 Thursday, 7 May 2015 by Brandon Baily, the Associated Press, San Francisco @
  5. My will is in order.  My house has been decluttered.  Pictures are mounted in books.  I have completed an inventory of my belongings and have insisted that my children indicate their preferences.  I am either indicating who gets what or designating who is responsible for distributing various categories.
  6. I have expressed my desire to “Age in Place” and am in the process of discussing the various options to accomplish this plan.  I have planned ahead to pay for in-home support.  I have made it clear that my children need to share the responsibility for any care that we need.  I have also made it clear that I believe in quality versus quantity of life, and what steps are to be taken concerning life and death decisions.
  7. I have written a book, What to Do about Mama? which is a manual, of sorts, for them to follow.
  8. I realize I cannot control life.  I’m just doing the best I can.
  9. I have been able to inform and assist others with caregiving problems and situations.  I am fulfilled by using my knowledge and experience to help.  Caregiving either impacts or will impact almost everyone.
  10. I understand that What to Do about Mama? is not a “sexy” topic, but believe that being prepared is better than reacting in a crisis mode.  Just ask any caregiver.

Barbara Matthews

Long-Distance Caregiving

Article from: Pulse—Voices from the Heart of Medicine

Although Madge Kaplan’s article is about long-distance caregiving, the strongest message that I get is the humbling nature of the journey’s end. Even Madge’s professional involvement in healthcare and her father’s involvement with public discussions about aging did not make the experience any easier for them—not really. The focus of my book, “What to Do about Mama?” (a collection of caregiver stories) may be to help mitigate some of the stresses of caregiving, but in reality no one is ever able to control how the process will play out (it’s not even close). I am in total agreement with Madge’s comment about the articles that present the “best spin” of caregiving. As much as I support being “positive,” the truth is, who would ever choose to lose their health and abilities on the end-of-life path that we will all travel? And what caregiver would choose this debilitating journey for their loved one? It is never easy.

(Not So) Golden Years
Friday, 7 March 2014

Madge Kaplan
When I read news articles about caring for elderly parents at a distance, I sometimes shake my head. There’s a tendency to put the best spin on the experience: as long as you contact the right people, get the right information and treat the ups and downs as just part of life’s challenges, you’ll be fine. You can do this!

I find myself wondering when the author last talked to a caregiver at her wits’ end–emotions and finances drained, logistics spiraling out of control.

I was a long-distance caregiver for twelve years. I believe it’s best to resist a formulaic approach in favor of one informed by the details–and always, always, humbled by the truth.
Because the truth–and real life–can be humbling indeed.

When my father was in his eighties, he engaged in many activities, from local politics to observing at the UN for an international human-rights organization. He often organized public discussions about our nation’s aging population and how unprepared we were, as a society, to care for their needs.

Then, in 1998, between Christmas and the New Year, he had a stroke.

Suddenly, he was exhibit A.

When I got the call about my father’s stroke, I was working as a national healthcare correspondent for public radio. I lived four hours away from him, and my sister a bit closer; together, we swung into action to help in every way we could. But nothing was easy.

After acute-care hospitalization and rehab, my father returned home dramatically less independent. He relied on a walker to get about a cramped and cluttered apartment–and relied on his wife, ten years younger, to help with pretty much everything else.

Fortunately, he had a computer with which he could search the Internet and keep up with things; he wrote long emails to family members, discussing whatever he was thinking about or had read.

Because the computer was his link to the outside world, when it malfunctioned my father was beside himself with frustration. I’d try to troubleshoot over the phone, and my sister and I installed safeguards, but these weren’t always successful.

My father’s homebound status revealed the limitations of Medicare and of his supplemental insurance coverage for long-term care. Medicare, for instance, covered only a limited number of home visits by nurses and aides, and then only after a hospitalization. Once those days were up, you had to pay out of pocket. My father’s finances consisted of a fixed income (mostly Social Security) and meager savings; he wasn’t poor enough to qualify for the Medicaid that would have covered a home aide.

My sister and I helped pay for the aides, but none of our efforts helped my father to adjust psychologically. Though he knew he was an elderly man, the idea that he’d probably never again be able to walk without assistance or lead an active, independent life made him feel cheated and disappointed.

These complexities were worsened by my father’s marital situation. My mother and father had divorced twenty-five years earlier, and my father’s second wife had serious mental-health problems, most notably paranoia. She viewed helpful outsiders–including her husband’s daughters–with suspicion. Though intrigued by my knowledge of health care and my knack for navigating the system, she also felt resentful, and this played out in disruptive ways.

For instance, although my father appreciated the aides we paid for, his wife accepted them only grudgingly. If she didn’t like an aide, she unhesitatingly found an excuse to get rid of her.

This led to periods during which my father and she had no home help. Some days she’d go out and leave him alone. If he fell, as he sometimes did, and remained on the floor for hours until she returned, that was just the way it was.

My father covered for her lapses, reluctant to have us interfere. In fact, we usually didn’t learn of these episodes until much later.

As I look back on this now, it’s hard to imagine how my sister and I managed to ride the roller coaster of our emotions–surprise, distress, frustration, resentment, helplessness. It was like a bad dream that just went on and on.

At times I found the situation too embarrassing to discuss with anyone but my sister and my closest friends. But I learned that other long-distance caregivers had their own hair-raising tales.

I discovered that we all lost sleep over the same things:
• the presence in our parents’ homes of a series of home aides, most of whom we’d never met;
• ringing phones that didn’t get answered although someone had to be home;
• newly purchased, lifesaving medical-alert buttons that we hoped would work as promised;
• walkers that tended to get caught in rugs, slippers and sidewalk cracks;
• unopened mail, missing bills, checkbooks, eyeglasses, hearing aids or (fill in the blank);
• refrigerators and cupboards that always seemed insufficiently stocked;
• doctor’s appointments we weren’t there for;
• long days alone we weren’t there for;
• medication lists that were out of date;
• lack of adequate funds for long-term care; and
• the inability to start planning ahead for our own long-term needs.
We did share one positive: a deep gratitude for the handful of social workers, hired from a distance, who said things like: “You’re doing all you can. It’s important that you live your life, too.”

Even years later, this list still feels relevant. There have been improvements in long-term care coverage, but not nearly enough; most families have to dig deep into their own pockets to obtain the necessary help.

In 2010 my father died of congestive heart failure while living in a nursing home (the roller coaster of institutional care was another long-distance challenge for my sister and me). Once he was buried in a veteran’s cemetery, we never saw or spoke to his wife again.

Our mother, who’s in good health and lives near me, turns ninety this year. At some point she’ll need more help–and when that time comes, I will try to remember that family caregiving, long-distance or otherwise, is hard and imperfect.

It can also be gratifying. But when it isn’t, that’s not because we forgot to review the playbook or aren’t clever enough. And being honest about that is where we all need to start.

I’m glad that there’s now a lot more public discussion about the ups and downs of family caregiving, including long-distance care. What still saddens me is how the challenges (including dealing with difficult spouses or family members) pretty much take over your interactions with your parent–sometimes for years.

The quality of your time together, the quality of conversation, is never quite the same. And then one day this person you’ve been constantly worrying about is gone–and you never did get to sit and read together or listen to classical music or tell funny stories from the past.

I’d like to believe that we as a society can figure out something better than this.

Until that happens, my sister and I continue to learn from our experience with my dad. Our hearts especially go out to everyone caring for older family members, whether near or far. We all are trying to do our best under challenging circumstances.

About the author:

Madge Kaplan is director of communications at the Institute for Healthcare Improvement (IHI), in Cambridge, MA. She hosts and produces WIHI, IHI’s online audio “talk show” about innovative, evidence-based approaches to health and patient care. She spent twenty years as a public-radio broadcast journalist, most recently at National Public Radio, and was a 1989/99 Kaiser Media Fellow in Health. Her reporting has been recognized by American Women in Radio and Television and by the Pew Charitable Trusts, among others. She’s also written short plays, including one recently staged by The Vineyard Playhouse.

Story editor: Diane Guernsey

Barbara Matthews