Posted: May 13, 2015 | Author: Barbara G. Matthews | Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Impact on Family Relationships | Tags: "What to Do about Mama?", acceptance, Age-in-Place, avoiding-crisis-mode, caregiving, caregiving-book, catharsis, challenging, change, communication, death and dying, declutter, electronic-tracking-system, emotions, empathy, everyobne-impacted-by-caregiving, expectations, feelings, forgiveness, healing, honesty, inventory-of-belongings, journaling, life-and-death-decisions, mother-in-law-quarters, new beginnings, organizing, pictures, planning, possibilities, preplanning, reality, therapeutic, wrapping-up |
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 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
positives and negatives
resignations about what is and possibilities of what can be
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.
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. 
- Section three is for digging into your past.
- Section four is about the future.
- Section five is for dreaming.
- 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.
In all the books:
Face reality
Note your feelings
Be honest with yourself
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
to 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.
HOW I HAVE CHANGED:
- 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.
- I have healed through the cathartic process of writing a book, blogging, and speaking publically about caregiving.
- 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.
- 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
- 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.
- 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.
- I have written a book, What to Do about Mama? which is a manual, of sorts, for them to follow.
- I realize I cannot control life. I’m just doing the best I can.
- 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.
- 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
Posted: August 4, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: burden, caregiver-decline, caregiving, change, CHF, decline, inevitable, priorities, rationalization, slippery-slope |
I couldn’t help but notice the name of the poem by dementedgirl was the same as a heading in my book, What to Do about Mama? Obviously the concept is the same: the accelerated decline or our care receivers–despite our best efforts to maintain control and thwart the inevitable.
DEMENTED
The Politically Incorrect Alzheimers Poetry Blog
Slippery Slope
It’s a slippery slope that we live on these days,
Mum-in-law’s changing in various ways,
After three years of “relative” stability,
She’s suddenly losing all of her abilities…
The days of the week to her are no longer clear,
Gaps in her functioning starting to appear,
A fridge full of food that is covered in mould,
Aggression and paranoia starting to take hold…
Increasing confusion, she’s slipping away,
It’s growing more obvious now by the day,
Hostile to the carers, rude to husband and me,
I shudder to think as to what might still yet be…
It’s all expected – doesn’t come as a surprise,
Reading stories of others has opened my eyes,
If I knew in advance, I could start to prepare,
But still somehow I am always caught unawares…
It is all so sad, but somehow all inevitable,
Still, that doesn’t make all this any less terrible,
It’s a slippery slope that we live on these days,
Dealing with this new and worse Alzheimer’s phase…
Thoughts on “Slippery Slope”
August 4, 2014 at 8:57 pm
SLIDING DOWN THE SLIPPERY SLOPE
Mom began to have more episodes of bladder or bowel incontinence and falls, sometimes one in conjunction with the other. She once fell in the bathroom at 3 a.m. because she was trying to clean herself up without waking us. Falls resulted in terrible skin tears because her skin was so fragile. Wound care was becoming one of the most difficult aspects of caregiving.
Another time, I had just gotten my mother-in-law cleaned up in the shower after an “accident” and was in a hurry because I had a doctor’s appointment myself. The appointment was important because I was experiencing shooting pains up the left side of my head. My mother-in-law had to sit down on the commode again, so I had to leave her sitting there waiting for my daughter to arrive to help her grandmother get dressed and have lunch. At the appointment I was diagnosed with shingles, an ailment common to caregivers.
After the next incident of incontinence a relatively short time later, my mother-in-law said, “I appreciate all the things you do for me. I appreciate your patience.” That was the first (and last) time she ever expressed her appreciation to me; it was good to hear.
My mother-in-law’s decline was especially difficult for my brother-in-law; his wife made a point to express this to me very specifically. He had no confidence in his ability to be alone with her. With tears in his eyes, he told me that he saw himself as the “last bastion of propriety” in his relationship with his mother. I did understand how difficult it is to watch a loved one’s decline; his brother, after all, faced it every day. I felt, however, that was not an acceptable excuse for not assuming responsibility. During that same conversation, his wife also made this comment: “My priority is my children. I am only a daughter-in-law.” I was amazed.
After Mom returned from the graduation trip the previous May, I had a discussion with her regarding my role as caregiver. I told her that I realized that she did not like me to speak up at the doctor’s office or for me to make comments about her nutritional needs. I told her that I would take a less aggressive approach with her healthcare, but that I would expect her to vocalize her wishes to me so I could proceed according to those wishes. Over the next several months I noted a gradual increase of edema in Mom’s legs; she was gaining weight, approximately two pounds per month. She was going to the doctor regularly; her weight was always documented; the doctor frequently looked at her legs. Mom never specifically brought up concerns about the edema with the doctor during that time—and neither did I.
Sometimes, no matter how hard you try, you just cannot stop nature from taking its course. One year after her initial pneumonia Mom became sick again, but this time it was worse. She was hospitalized with pneumonia and congestive heart failure (CHF), and the doctor made a referral for a pulmonary specialist to review her case. Her diagnosis was bullous emphysema; the small bubbles in her lungs had become large, limiting oxygen absorption. The doctor described her condition as “very bad.”
Two days later, David and I met with her doctor. Her oxygen needs had increased to 8-12 liters and were too great for her to be admitted to a nursing home. A hospice referral was recommended to facilitate our ability to take her home. David talked to his mother privately about the situation. When I entered the room, she had a forlorn look on her face. Later that afternoon David called me. Hospital personnel discovered that Mom’s hospital equipment was not functioning properly and that her oxygen needs were actually 2-3 liters. Hospital staff proceeded with getting Mom accepted into a nursing home for rehabilitation once again.
Mom was in the nursing home from mid-December until the beginning of February 2010, despite the fact that she had fallen in the facility a week before her discharge. I did not feel she was strong enough to be discharged, and indeed, she had two falls the first weekend home. Once again, we began in-home services: physical therapist, occupational therapist, and RN. I made sure to give the RN a heads-up before she came; Mom looked like she’d been beaten up due to multiple skin tears from her falls. On February 8 my knee locked up while squatting to dress Mom’s six wounds. The knee became difficult to unlock, and during subsequent episodes, remained locked for up to 12 hours at a time causing me to limp and walk on tiptoe. Two times Mom and I almost went to the ground together!
Barbara Matthews
What to Do about Mama? 