A Guide to Caring for Aging Family Members

Archive for the ‘The Positives and Negatives of Caregiving’ Category

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.”

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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?

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

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Caring for Katie at Home—One Big Roller Coaster Ride: Katie’s Story, Part Eighteen

Roller Coaster

Caregiving for Katie is one big roller coaster ride.

As of last Monday, Katie has been home for six weeks.  I would like to report that everything has worked out and this care plan is now sailing smoothly.  But since most of you are probably caregivers, you already know that there’s always a problem to be mitigated just around the next bend—especially in a scenario as complicated as Katie’s.

Ironically, even improvements bring with them another glitch.  When I visited Katie on Tuesday, she was especially quiet and blue.  When I asked her about it she said, “I’m not sure I will ever walk again,” and, “Every day is the same as the last.”  I asked her if being home was better than living in the nursing home and she replied, “Oh, yes!”  But, because Katie is much more aware and much more expressive she is also recognizing the profound extent of her limitations, unlike in the nursing home where she just slept through time.

On Tuesday, Sam said that for the past three days Katie had been crying out again.  He doesn’t feel that he can stand it if she doesn’t get a handle on her pain.  But then during Thursday’s visit he reported that Katie had shown improvement again–hence the roller coaster analogy.  The OT recommended that Sam and Gloria give Katie a heads up before each and every movement when transferring and providing personal care.  I reminded Katie that it is her responsibility to maintain control—she is the only one who can do it.  Of course we remember to acknowledge the difficulty of bearing pain and to lavish her with praise when she does well.  Ups and Downs

The biggest UP that I can report is that Katie’s room is finished and that Gloria is now able to provide care independently for those times Sam must be away from home.  That alleviates the need for Sam to make arrangements with the neighbors to cover when he is working at his part time job.

The biggest DOWN is really a bummer.  The transfer of funding from the nursing home to the community was supposed to be a “seamless” process.  Seamless, indeed!  There has been NO transfer, so none of the vendors have been paid for the environmental modifications, consumable products have not been provided (such as diapers, wipes and barrier cream), delivery of equipment has been held up (such as the combination shower chair-wheelchair), and most importantly, the agency caregiver has not been paid (because she is living in the home 24/7, all she has received is her room and board).  Obviously, this is causing a great deal of stress for everyone involved, and the problem needs to be rectified soon.

I have a few ideas for dealing with some of these problems, but I will leave that for the next post.  In the meantime, I would sure appreciate hearing any thoughts and suggestions you experienced caregivers may have to offer.

Complicated Ups and Downs

The Ups and Downs of Caregiving. It’s Complicated.

 

Katie Laughs and Katie Smiles: Katie’s Story, Part Fifteen

Judene and I went to visit Katie last Friday.  Judene took some silly Christmas headgear antlersfor us all to wear while we sang Christmas carols.

Katie sang, Katie laughed, Katie smiled.

Welcome Home, Dear Friend

Welcome Home, Dear Friend

Bumps in the Transition Road: Katie’s Story, Part Fourteen

bumpy road logo

Expect bumps. Good philosophy.

  • “There are always bumps in the transition road–we expect them,” the Provider said. “Give this about a week and Gloria, Sam and Katie will start to get into a routine.”

 

  • First bump:  In short, the home health agency did not show up on Tuesday, and will be unable to come until Sunday. This occurred because the nursing home did not send the orders until the day of Katie’s release; orders were incomplete; the staff was uncooperative in rectifying the problem.
  • Second bump:  The environmental modifications could not be provided until after Katie’s discharge.  Katie’s living area is carpeted, which makes it very difficult to move the Hoyer lift and wheel chair.  In addition, since Katie is dead weight in the bed, it takes two people to move and transfer Katie.  The laminate floor will not be installed until after the New Year.
  • Third bump:  Sam is having difficulty visualizing that Gloria will be able to handle the heavy aspects of Katie’s care without assist.  He points out that this has always been his biggest concern.  The success of the plan rests on the caregiver’s ability to work independently.  In the meantime, Sam will have to pitch in to help Gloria, or make arrangements to have the neighbors help.

Road Construction.

Sam is embroiled in the middle of a very difficult situation.  It’s hard for him to see the positives.

  • First positive:  The Provider is monitoring Gloria’s ability to handle Katie.  They will make adjustments where needed and are confident that it will all work out.
  • Second positive:  The Provider reports—“ I cannot believe how alert and oriented Katie is—it blows me away. She is reminding Sam to do things!  Sam went up to get some tape and came down and said, ‘I can’t remember what I went upstairs for.’  Katie replied, ‘Honey you went for tape.’  After Sam leaves the room, Katie says to me, ‘I think Sam needs to do some of my brain teaser exercises to stimulate his brain.’  Gloria, Katie and I cracked up. She laughs, she smiles—she is funny and right on point.”
  • Third positive:  Katie’s new mantra–
mantra

IT IS WHAT IT IS

 

Empowerment

Susan Diamond’s blog entry “When Aging Parents Can No Longer ‘Do.’ Ways To Empower So They Can Continue to ‘Do.'” is about empowering aging parents:  http://helpparentsagewell.com

I’d like to share a few more examples of empowering aging parents.  When my MIL moved from Florida to our hometown, she bought a pontoon boat.  This was something she always wanted.  My husband was the captain and we took her boating frequently with family and friends.  She’d strut out of her retirement community building with her jaunty pink cap to go boating—and I knew she was “showing off” a bit for the other residents.  Unfortunately, she fell in the bathroom after a day on the boat and broke her tailbone and pelvis.  That was the end of the boating, and the beginning of the vicious cycle of falls, hospitalization, and nursing home rehabilitations.

My MIL then moved in with us and I was her primary caregiver.  We had two good years before the next decline.  I took her to the senior center twice a week to play bridge.  Sometimes we would have lunch and bridge parties at our home.  Best of all, she was able to participate in all our family celebrations.  When the grandchildren were around (and running amok), she liked to say, “I started all this.”

Pneumonia and congestive heart failure began to ravage her body and she started receiving hospice services.  Even then, we put a lot of emphasis on maintaining social relationships and activities.  Hospice loves to come in and help people enjoy everything they can do in life. Her hospice group supplied MIL with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter.

Even if the last two years in our home became extremely difficult, I feel good that we did the best we could to empower my husband’s mother.

Barbara Matthews

Positive or negative?

See:  Help!  Aging Parents:  http://www.helpparentsagewell.blogspot.com for complete conversation about “Aging Parents and Us–as Caregivers: Know Thyself.”

Barb’s comment:

Knowing thyself as a caregiver involves the understanding of positives and negatives.

For seven years my husband and I were caregivers for his mother. Initially, she moved to our area and into a supportive independent living retirement community. This arrangement worked well for three years. Then we entered into a crisis phase for six months due to a cycle of falls, hospitalizations, and rehabs. In an attempt to end this “vicious cycle,” my mother-in-law moved into our home and I became the primary caregiver. The arrangement went well for two years before we inevitably hit the slippery slope of decline, which lasted another two years until her death. Those last two years were very difficult.

After our journey was over, I wanted to turn what had become quite negative into a positive once again. I (along with my co-author) wrote a book about caregiving, What to Do about Mama? A Guide to Caring for Aging Family Members, and am in the process of promoting the book on social media sites, an area in which my experience is practically nil. My oldest daughter is helping me with this endeavor.

This brings me to the point I am addressing: What’s positive and what’s negative? Although my daughter is proud of my accomplishment of authoring a published book, and although she believes the book has value for “people who need it,” the book in and of itself makes her uncomfortable. Simply, it feels negative to her. Isn’t it ironic that I wrote a book to turn a negative into a positive, but that it feels negative?

Of course, as a mother, I’ve been a caregiver most of my life. But for me, caregiving for children is a hopeful process of building and preparing for the future. But caregiving for an aging parent is in contrast trying to make the final path as comfortable and trauma-free as possible by doing the best you can day by day.

susan says:

I think your last two sentences say it all, Barbara. Of course no one is perfect And when we do the latter to the best of our ability, we basically have no regrets (a positive). This isn’t always true with parenting, however. We can do our best and we can still have regrets (I know this well from my many years of counseling). Wishing you good luck with your book.

Barbara Matthews

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