A Guide to Caring for Aging Family Members

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We made it! 

Readers and Followers:

Despite the fact that I am taking a break from this caregiving blog, the need for caregivers is not going to go away.  Since I believe my book, What to Do about Mama? and blog remain relevant, I have developed this “categorized index” so that you can reference posts related to your own caregiving endeavors.

Planning and preparing for caregiving

Life is fragile

Caregiver Questionnaire

Becoming a Caregiver and Planning for the Future

Expectations

The Family Meeting

Slippery Slope

The Evolution of Caregiving

Caregiving profiles and difficult caregiving choices

Aging in Place: Moving in with the Kids

He Needs to Read the Book

Moving In!

Caregiving: Should I quit my job?

Long-Distance Caregiving

That Darkest Place

Your care receiver

Goal Setting: Does it Impact Longevity?

Advocacy

Autonomy

Should you sit in on doctor appointments?

Empowerment

A Thread of Conversation with the Cape Cod Caregiver

Canes: Aging and Vanity

Say what?

Reflection of the Future

When Parent-Child Lines become Fuzzy

The caregiver:  body and mind

Characteristics and Abilities of a Good Caregiver

Optimist-Pessimist-or Realist

Positive or negative?

Does Caregiving Impact Caregiver Health?

Support Groups

Caregiver’s Break

Respite

Caregiver Stress Webinar

Do Family Caregivers Feel Valued?

Not quite the plan: Dating and caregiving.

Looking ahead:  How will our children be prepared?

Caregiving Role Models

Burdening Our Kids

Family interaction in caregiving

Shared Responsibility

Too Many Cooks in the Kitchen

Emotional Conflict

Resentment: Recognize and Eradicate

It’s in the Book!

Family Dynamics: Caring for In-laws

Caregiver Contracts

Organizing and processing “things”

It Pays to Prepare

Processing the Pictures

Belongings

Death, dying and other difficult emotions

The Conversation Project

A Controversial Issue Worthy of Comments

Again, Quality vs. Quantity of Life

Would you choose to die at 75?

People cope with death in many different ways – The Patriot-News

Different Perspectives on Grief

Hospice: When Should They Get Involved?

Childhood caregiving and children’s grief

It never goes away and it has made me who I am.

Missing Childhood: The Overlooked Caregivers

Remembering those who have died 

Heart Memories 

My Counterpart: a Go-To Grammy

Katie’s Story:  Parts One (October 2014) through Twenty-five (April 2015)

From Shifting Gears: Katie’s Story, Part One. (10/14) to Where Do We Go from Here?: Katie’s Story, Part Twenty-Five (4/15)

Thanks for visiting!

Barbara Matthews

 

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How will you care for your elderly parents? Matthews and Blank provide the answers.

SUNBURY PRESS BOOKS

HARRISBURG, Pa. —  Sunbury Press has released Barbara G. Matthews’ and Barbara Trainin Blank’s self-help book “What to Do about Mama?: A Guide to Caring for Aging Family Members.”

wtdam_fcAbout the Book:

Everyone is a potential caregiver.

Fifty-four million Americans already serve as unpaid caregivers to family members, and that number is likely to grow as the population continues to age.

Two-thirds of these caregivers are women—many of them in the “sandwich generation,” simultaneously caring for both children and older family members.

This book offers guidance to present and future caregivers—based on the real-life experiences of the authors and other caregivers who have openly and honestly shared their joys and heartaches. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving.

Your experiences may be similar to or different from…

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Personal Caregiving Stories

What to Do about Mama? is a guide to caring for aging family members based on personal caregiving stories.

WHY BLOG?  The purpose of this blog is to discuss caregiving experiences, many of which are addressed in “What to Do about Mama?”

Words that describe caregiving (Can you add more?):

C   COMPASSION  Communication  Cooperation  Challenge
A   Ability  ADVOCACY  Appreciation  Autonomy
R   Resourceful  Reliability  RESPONSIBILITY
E   Education  EMPOWERMENT  Encouragement
G   GRATITUDE  Growth  Grief
I   Inspiration Ingenuity  INDEPENDENCE  Initiative
  Values  VISION  Viewpoints  Validation
I   Individuality  Integrity  Intuition  INSIGHT  Imagination
N   Needs    Nonstop  NURTURING  New-Normal  Notable
G   Growth  Guidance Gratification  GIFT

Barbara Matthews

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.
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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 AgingCare.com 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).

THE QUESTION:

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
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positives and negatives

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resignations about what is and possibilities of what can be

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Why Not?

CLICK ON THE LINK ABOVE TO READ THE ARTICLE

OR

 SEE THE FOLLOWING SYNOPSIS

OR

 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.

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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.”

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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.

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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
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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.”

HOW I HAVE CHANGED SINCE CAREGIVING:

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?

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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.
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“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.

HOW I HAVE CHANGED:

  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 @ harrisburgpatriotnews.pa.newsmemory.com/publink.php?shareid=0ffc7eaed
  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

In response to the  “Not quite the plan’s”  post on “Dating and caregiving:”

I refer you to “Marianne’s Story” in my book What to Do about Mama? Marianne opens her story with the comment, “I provided care for both my mother and my father. My mother had multiple sclerosis my entire life, so my caregiving began as early as age 4, when I simply offered my hand to help steady her walking gait.” (WTDAM p. 116) She goes on to describe her caregiving role as her responsibilities grew over a period of 40 years.

Later in her story Marianne states, “My husband, too, has had a lifetime caregiver role both with his sister, and later, his mother.” (WTDAM p. 119) (Sister is a post-polio survivor who must sleep in an iron lung every night. Mother lived to be a centenarian.)

One can conjecture that early on in their relationship, these two individuals were attracted to one another based on their similar life experiences and value systems; and taking that one step further, that their successful multi-decade marriage was built on mutual understanding, cooperation, and commitment.

My point? Keep looking. You, too, may find your diamond in the rough.

Dating

Not quite the plan

So another relationship ended a couple of months ago and I am back to the wilds of dating life.  This week I have my first first date in a couple of years and am of course contemplating how to juggle dating and caregiving for Mom.

I find myself staring at the question on the online dating site I frequent:  “Would you date someone who still lives with his/her parents?”  Answer– from every guy who appears like an interesting date for me: “No.”

And then there is the message from someone who thinks he is being creative by asking me what the movie about my life would be titled.  I ponder whether I share one of my possible titles for my memoir about this whole caregiving journey.  Not quite the plan?

At what point does one mention, by the way, I live with my mother with rapidly advancing dementia?  Is this a topic for…

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Psychology Today Post

https://www.psychologytoday.com/blog/your-personal-renaissance/201504/ambushed-eldercare-you-re-not-alone

Ambushed by Eldercare? You’re Not Alone

7 strategies to help you cope

Post published by Diane Dreher Ph.D. on Apr 08, 2015 in Your Personal Renaissance

Source: Google Images labeled for reuse
Psychology Today
Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.

More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.

“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,” says Barbara Trainin Blank, author, with Barbara Matthews, of What to Do about Mama? A Guide to Caring for Aging Family Members (2013, p. 43).

Blank, a professional writer accustomed to multiple deadlines, admits that, “Taking care of my mother may have been one of the most difficult things I’ve ever had to do in my life” (2013, p. 34). Her mother lived 180 miles away, her brother lived much closer, but in many families the weight of caregiving often falls upon one person.

Cascading stress, sleeplessness, grief, guilt, family conflicts, anger, resentment, exhaustion, and burnout—caregiving takes its toll. Psychologist Dale Larson calls this falling into “the helper’s pit” (1993, p. 38). How to stay out of the pit? Larson says to stop blaming yourself if you feel overwhelmed by caregiving and ask instead, “What can I do about this situation?” (1993, p. 55). Drawing insights from their own experience and a wide range of caregivers, Matthews and Blank offer seven powerful strategies:

  1. Start Planning. If you have older family members, begin asking about their values and wishes for the years ahead. Do they need to scale down, move into a more accessible home, closer to family members, or into a continuing care community? Determine what needs to be done and the support caregivers will need to handle these challenges. If your relative is intent on staying at home, who will pay the bills? Take this person to the doctor? Assist with meals and the activities of daily living?
  2. Get Community Support. Find out about support services in your relative’s community, such as the local Agency on Aging. Check out senior services and information online such as ElderCarelink  (link is external)or SeniorsList (link is external).
  3. Reach Out. Network with other family members and your loved one’s neighbors and friends. Check out possible support from your relative’s church or synagogue. And consider joining a caregivers’ support group to share information and personal support.
  4. Take Care of Yourself. Too many caregivers wear themselves out, getting sick themselves. Watch for signs of stress and burnout. Are you:
  • Feeling run down and exhausted?
  • Having trouble sleeping?
  • Easily annoyed?
  • Getting sick more often?
  • Having trouble concentrating or remembering things?
  • Becoming socially isolated?
  • Feeling helpless, depressed, or overwhelmed?

Caregiving is a serious responsibility, but don’t become so engulfed in it that you stop being yourself.

  1. Make time for a regular stress management practice. Barbara Trainin Blank says she dealt with the challenge of caregiving by walking in the mornings with a friend. Regular exercise is good for both body and mind, relieving stress, activating our immune systems, and helping dispel depression (Rethorst & Trivedi, 2013).
  2. Take regular breaks. Matthews and Blank emphasize the need for regular “respite care,” especially if you are caring for your loved one’s daily needs. If possible, recruit other family members. Check out senior day services and respite referrals at the local senior center.
  3. Keep up with your own interests. Blank stayed in touch with friends and participated in community groups—relieved to spend time with people who were not dealing with the chronic stress of caregiving. She continued to do some of the things she loves: creative writing projects, watching old movies, and donating to causes she believes in.

As Matthews and Blank (2013) found in their surveys of more than 30 caregivers, the key is to balance your own needs with compassionate care and realistic problem solving. How you handle the challenge of caregiving will make a major difference in many lives, including your own.

References

Matthews, B. G., & Blank, B. T. (2013). What to do about Mama? A guide to caring for aging family members. Mechanicsburg, PA: Sunbury Press. http://www.amazon.com/What-Do-about-Mama-Members/dp/1620063158/ref=sr_1_1?s=books&ie=UTF8&qid=1427846005&sr=1-1&keywords=what+to+do+about+mama (link

Larson, D. G. (1993). The helper’s journey: Working with people facing grief, loss, and life-threatening illness. Champaign, IL: Research Press.http://www.amazon.com/Helpers-Journey-Working-Life-Threatening-Illness/dp/0878223444/ref=sr_1_1?s=books&ie=UTF8&qid=1428530954&sr=1-1&keywords=The+Helper%27s+Journey

Rethorst, C. D., & Trivedi, M. H. (2013). Evidence-based recommendations for the prescription of exercise for major depressive disorder. Journal of Psychiatric Practice, 19, 204-212.

***********************************

Diane Dreher is a best-selling author, personal coach, and professor at Santa Clara University. Her latest book is Your Personal Renaissance: 12 Steps to Finding Your Life’s True Calling.

http://www.dianedreher.com

Helping Others

Katie’s Motto

Katie’s life before her TBI was full of profoundly meaningful activity.  Katie was dedicated to helping others in a multitude of ways.  (See “The Plan” Katie’s Story Part Six.)

Katie’s life now revolves around her daily care.

Additionally, however, there has been significant improvement in her social interaction.  She is able to go to church.  Friends come to visit, and together they enjoy activities like dinner and movies and games.

But I’ve been thinking about ways to rekindle the element of altruism that was once integral to Katie’s objective in life.

I asked Katie if she would like have a pen pal, and suggested
Gabrielle Giffords http://en.wikipedia.org/wiki/Gabrielle_Giffords  or
Sharon Budd http://www.pennlive.com/midstate/index.ssf/2014/10/victim_of_i-80_rock-throwing_s.html
The idea did not pique her interest.

I talked to Sam about joining a support group so that he and Katie could have the opportunity to both give and receive encouragement by sharing common challenges with other brain injury patients.

Sam did not discount the idea entirely, so I think I will bring it up with Katie at our next visit.

Sam did say, however, that he is not personally under a lot of stress, and although that is probably not entirely true, I will say that his demeanor has improved greatly.  Sam appears to be doing better than I have seen him for more than two years.

When I asked Sam specifically if life has improved for him since Katie came home, he replied, “Yes.” This I was obviously pleased to hear.

NO BIG NEWS is a GOOD thing!

NO BIG NEWS
A GOOD thing!

I’ve been struggling somewhat over continuing to blog Katie’s Story.  There is no longer any “big” news to report—and that is a good thing.

So, although I will leave the door open for future posts about Katie, I would like to sum up Katie’s Story with the following observation.

Life is unpredictable and sometimes catastrophic.  What happened to Katie was tragic and overwhelming.  Although Katie’s life will never be the same as it was before her brain surgery, it is better.  Arriving at this place was improbable, but every effort has been worthwhile.

I would recommend to others in crisis to think creatively, to be optimistic, and to have perseverance.  Sometimes you can accomplish more than you ever thought possible.Success

 

And finally—

Don't Listen

Movie

Judene and I couldn’t visit Katie last week.  Sam called and cancelled our date because they were having other company.  Sam was apologetic, but I told him that was great.  Re-establishing a social network is one of the objectives of bringing Katie home.

We were able, however, to visit Katie yesterday.  I brought the movie The Theory of Everything which is a biopic about quantum physicist and scientific genius Stephen Hawking, who was diagnosed with a devastating neuromuscular disease in 1962.  While he was given a life expectancy of two years—Hawking overcame all the odds and is still living more than fifty years later.

Biopic

Katie Identifies

In one poignant scene, Hawking fantasizes about getting out of his wheelchair, walking down the steps, and picking up a pen that a young woman has dropped.  Katie has, on a number of occasions, imagined that she, too, has walked.  We were able to talk about how intense desire can make such an illusion seem so real.

Popcorn

…and the popcorn, too!

At the end of the movie Stephen Hawking’s character states, “Where there is life there is hope.”  I think Katie enjoyed the movie and the message…

Thanks

In my  November 18th post:  The Plan, Katie’s Story Part Six, I recounted that when Sam decided to pursue the idea of bringing Katie home I e-mailed the social services director at Aging with the request that she facilitate the agency process.  She told me that she was retiring in a few months, and that the nurse (who I really wanted to do the assessment) was leaving the agency in a couple of weeks, but that she would do what she could to help.  Because she followed through with her commitment and got the ball rolling at the agency, everything fell into place as I have reported throughout Katie’s Story.

I recently invited this lady to join me for a visit to see Katie.  I wanted her to be able to witness how “The Plan” was working (which none of us expected to come to fruition) and how her efforts contributed to the dramatic improvement in Katie’s living condition and outlook on life.  She was duly impressed.

I’m betting that what she saw will be a highlight for her whenever she thinks about those last days winding up her career.

At the top of my TO DO list I have added:

Thank All

On Katie’s Team

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