A Guide to Caring for Aging Family Members

Posts tagged ‘caregiving-book’

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.
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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.”

Blog1

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?

wtdam_fc

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.
Blog2

“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

Not quite the plan: Dating and caregiving.

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

Where Do We Go from Here?: Katie’s Story, Part Twenty-Five

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

A Movie for Katie: Katie’s Story, Part Twenty-Four

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…

An Opportunity to Say THANKS: Katie’s Story, Part Twenty-Three

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

Mundane is Magic: Katie’s Story, Part Twenty-Two

It’s been a cold snowy winter, but…

Change is in the air and

spring is just around the corner.

Spring

Sam took Katie to church.

Sam took Katie for a walk outdoors.

Judene and I took Katie out to sit on the deck.

A couple of neighbors stopped by.

Does this all sound:

Commonplace or

ordinary or

routine or

uneventful?

Well, maybe so…but in this case it is:

Exceptional and

extraordinary and

unusual and

exciting.

Mundane Magic

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