A Guide to Caring for Aging Family Members

Posts tagged ‘feelings’

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.
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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

My Counterpart: a Go-To Grammy

 

 Sunrise

My grandchildren’s Grammy, in other words—my counterpart—passed away on Father’s day.  Up until the last half year of her life, she was a vital woman and a go-to grandma.  She and her husband were married for nearly 44 years–two months less than I have been married to mine.  He wrote her eulogy, a beautiful tribute to his wife and their marriage.  The eulogy was hard for him to deliver at the funeral; he did it, but broke down.  My 6-year old granddaughter sat beside me, my arm around her holding on tight.  She cried when she saw her grandfather cry.  My 3-year-old grandson was a little wiggly in my lap; he being too young to understand.

Really, none of us “understands.”  Sure we know that we all live, and then we all die.  But we would drive ourselves to madness if we tried to make sense of the who’s and the how’s and the why’s, or the “fairness” of it all.

It’s also so hard to know what to say to someone who is unexpectedly diagnosed with cancer and decides not to undergo treatment.  So I tried to express my feelings by telling her:

“I am thinking about…

how overwhelmed you must have felt at the seemingly sudden onset of your disease;

how difficult it has been for you to decide what path to take;

the strength of your convictions in deciding your course of action;

your incredibly difficult decision and the courage of your choice;

how you are living life on your own terms;

the wonderful job you have done raising your children who have pulled together in providing support, in respecting your right to choose, and in demonstrating their unconditional love for you;

how much your daughter loves you;

how I hope my son is able to tell you how deeply he loves and respects you, but that if he cannot find his way to speak of his emotions, that you will trust me when I say that he does;

how I will always tell our grandchilden how much love their Grammy has for them and how much joy they have given you.”

And then, at a later date, when the end was drawing near, I sent:

“A Heartfelt Message”

You have given our family a precious gift—YOUR DAUGHTER.

Your kind and gentle nature lives through her.

You have instilled in her the values of  love, patience and honesty.

And so it passes—from mother, to daughter, to granddaughter.

Strong women, all.

 

I can only hope that these words somehow helped.  I think they are what I would like to hear.

Barbara Matthews

 

 

 

 

 

Support Groups

At the end of my post “The Family Meeting” (2-22-2014) I said: It’s really good to look at and consider a variety of perspectives and ideas. That’s what’s great about support groups…but that’s an entry for another day.

I’ve had my eye out since that time for an interesting article about caregiver support groups. The other day I searched Word Press for a blog. None. Nothing. Nada. They suggested I start one. Well, I want to do a support group post—not a whole blog—so here goes.

How I became involved with a support group:

If you’ve been following this blog, you know that I was primary caregiver for my mother-in-law who lived in our home for four years. Soon after we began that arrangement, my sister-in-law (SIL) told me that if I needed someone to talk to that’s what she was there for. Over time, however, I sensed that I sometimes got into areas that made her uncomfortable. For example, when I expressed my disappointment with the frequency of two of the siblings’ visits, SIL replied, “What my brothers and sister choose to do is on them.” It was about that time that she recommended I join a support group, which I did.

When people ask how it’s going in regards to caregiving, sometimes in that moment caregivers find themselves letting their frustrations flood out like water from a broken dam. But afterward they feel regretful or “weak” for having unloaded at an inopportune time. There is no reason to feel that way at a support group. The other members just “get it.” There is an amazing validation of feelings: you aren’t just “imagining” it, and you are not “bad” for feeling that way.

Sometimes you receive feedback that acknowledges and defines what you are trying to express even before you are able to put it in words. Support group members are good listeners. Listening to others is equally as helpful to the process as speaking; it helps keep your situation in perspective. It is common to feel that others are dealing with conditions much harder than yours and to wonder, “Why am I complaining?” But the other members really do understand—all caregiving has its challenges.

Some other benefits of support groups are:

  • It’s cathartic to “let it out” in a non-judgmental and receptive environment
  • It’s a welcome change of scenery and a time-out from caregiving
  • It’s helpful to hear the perspectives and suggestions of other caregivers and professional staff and to sometimes receive the “nudge” needed to make difficult choices
  • It’s great to realize that caregiving is an experience that group members “share,” unlike the “I understand this is difficult for you,” you often hear from family and friends who do not indeed share the full scope of the experience
  • It’s a wonderful feeling if your experience and participation are helpful to and of value to others
  • Enlisting friends and family to stay with the care receiver so you can attend support group is a good way for others to provide the help they have offered.

The main difficulty of support groups is just being able to go—because of the constraints of time and logistics.

On-line Support Groups:

For caregivers who cannot find the time or coverage to attend a support group, there are a number of good groups available on-line. Although I did not participate with these groups when I was a caregiver, I have been exploring them regularly while looking for material to blog. Although I personally preferred to talk to other caregivers on a face-to-face basis, a big advantage of on-line support groups is the rapid response to caregiving questions and concerns, as opposed to a “monthly meeting” format. Take time to explore these sites to find what works best for you.

Although the issues of time and securing needed coverage in order to attend are the main obstacles that interfere with attending a support group, those caregivers who do find a way to attend report that it is well worth the effort.

The following excerpts from “What to Do about Mama?” express a variety of perspectives about support groups.

  • I haven’t belonged to any support groups, other than one. But that group has been very positive for me—and I attribute that to the skills of the facilitators. The founder/leader of the support group is so tremendously empathetic; she is a caregiver herself in an extremely difficult situation. The other professional is a hospice social worker, with the special ability to put her finger directly on any problem with which you are grappling. Even though I am no longer caregiving, I have continued to attend the support group because our group leader makes me feel as if I have an important contribution to make in offering knowledge and support to other caregivers. Since I “retired” from a job to be a caregiver, it makes me feel really good to play the role of at least a “quasi-professional.” WTDAM pp.102-103
  • I attended almost all the support groups that were available in my area. Many were helpful for different reasons or needs that I was seeking to address. Presently I find that I need to attend only one group that is more for me—not for my mom. I need the support from this group of women who have become my friends for at least one day a month. They care about me; they patiently listen to me and my growling. They pat me on my head, they advise me, they praise me, they encourage me so that I can go on, and they let me know that I am doing a good job despite my fears and failures. The funny part about the meeting is that sometimes I go there feeling like I cannot go on, especially after having a particularly bad day/week/month, but there is always someone who has a story that is so much worse than mine. Listening to that story immediately puts it all into perspective and makes me feel that, “Yes, you can do this”—because she is doing it. It is empowering and replenishing and sometimes the highlight (if not the social event and reason to spiff up) for my entire month! WTDAM p.54
  • I did not join a support group, but I found that I gravitated to people who were currently or who had previously provided care to elderly people. It was helpful to discuss shared experiences. WTDAM p.57
  • My mother and I did not join a support group—we simply did not want to rehash what we were living through with other people. WTDAM p.76
  • I have gone to a support group and plan to continue going. I absolutely recommend it. One benefit is that such a group makes you realize you are not the only one whose world has turned upside down. On the other hand, sharing is sometimes difficult for me because I am acquainted with several of the women, and privacy is important. WTDAM p.84
  • I did not join a support group because I thought I was too tough. WTDAM p.100
  • My sister and I both had full-time jobs, and although it was stressful, we looked at caregiving for our mother as just another job we had to do. We did not join a support group—we barely managed to visit her several times a week and keep up with our own lives! WTDAM p.134
  • Did I join a support group? There was no time to for that! WTDAM p.139
  • Although I did not join a support group, I was fortunate to have good friends to talk to about the difficulties. Additionally, I appreciated the “pat on the back” that friends provided me. They also made good suggestions and gave me the nudge that I sometimes needed, such as calling on hospice. WTDAM p.171
  • My wife and I attend support group meetings together. You and your loved one may think that attending these meetings shows weakness. I must mention here that the meetings we attend are uplifting and informational. WTDAM p.209
  • I searched for a support group for caregivers—most were disease-specific or church-sponsored. I then made a proposal to my employer to start a caregiver-support group. They gave me the green light. I started “Care Giver Coffee Break & Tea-L-C” five years ago. I wanted it to be in a non-clinical setting and a place where for an hour a month, caregivers could bond with others in the same boat. It has been a wonderful experience, both as a facilitator and a caregiver. It is cathartic; we cry and vent and laugh and love each other. I would recommend to others to seek help and join a support group. WTDAM p.220

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