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: October 1, 2014 | Author: Barbara G. Matthews | Filed under: Miscellaneous | Tags: Alzheimer's disease, caregiving, murder mystery, novel |
I’ve been away visiting my daughter, who moved away with her family (and three of my grandchildren) in August. I’ve been a spoiled grandma. They lived here (15 minutes away and in the same zip code) since grandchild #1 was one month old. Anyway, while my husband drove, I had the pleasure of reading a book uninterrupted: This is my 5-star review of Going Home by Sharon Marchisello.
Ernest & Edgar Literary Blog
by Barbara Matthews
The doorbell rang…” and in through that doorway Sharon Marchisello issues forth one bombshell after another in her contemporary murder mystery,
Going Home.Michelle DePalma arrives at her mother’s home to find that the door is uncharacteristically wide open. Upon entering, she finds a young woman dead on the floor with her mother hovering nearby—seemingly unaware of what has taken place in the foyer of her home.
As Marchisello weaves her intricate tale, the doorway introduces:
- Unknown family: “I’m Isabella Rogers, and this is my daughter, Giovanna. I’m your daughter-in-law.”
- A policeman: “Michelle, I’m afraid the evidence is pointing to your mother.”
- A man with a raised baseball bat: “Where’s that crazy old broad that killed my Brittany?”
- A potential suspect who appears in: “The same vehicle I had passed on my way up the street the day I arrived, the day Brittany had died!”
Going…
View original post 126 more words
Posted: August 8, 2014 | Author: Barbara G. Matthews | Filed under: Assuming Caregiving Responsibilities | Tags: baby-boomers, burden, caregiving, caregiving-book, children, commitment, eldercare, grandchildren, responsibility, role-model, support |
I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation. If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids. But is it really a good idea to shelter them from all responsibility?
As I said in What to Do about Mama? “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)
I think I can safely say that none of us wants to be our children’s
ball and chain. 
Some folks see caring for parents as a given:
- “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)
But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.
- “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
- “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
- “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.” (WTDAM p.187)
Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.
- “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
- “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.” (WTDAM p.196)
Some were pleased with the contributions their children made.
- “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)
Others were not.
- “I was disappointed that my children did not develop a more loving relationship with their grandmother.” (WTDAM p.171)
- “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.” (WTDAM p. 219)
Some children expressed gratefulness to their parents for taking care of their grandparents.
- “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
- “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’” (WTDAM p. 28)
In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.
It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”
We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.
- “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206
So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.
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
Posted: February 22, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: caregiving, caregiving-book, commitments, contracts, expectations, family, responsibilities |
Debbie Williams-Maclean’s discussion of the family meeting is right on. As I’ve stated in “What to Do about Mama?” (p. 54):
“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”
Although we initially had a family meeting in our own caregiving situation, we were not specific enough about expectations, responsibilities, and commitments. After my mother-in-law had been living with us for two years, I started to attend a support group, which led to a second family meeting. This excerpt from “What to Do about Mama?” (pp. 12-13) describes that experience.
“The group leader suggested that we try to schedule a family meeting. I spoke to Shelley about the idea, which led her to call her other siblings and schedule one. Shelley also suggested we make a list identifying “What is Working and What is Not Working” (Shelley is a social worker), to distribute to the family beforehand.
David and I worked very hard on our “assignment.” We wrote openly and honestly about objectives, environment, health, communication, socialization, and family support—enumerating the positives and negatives in each category. What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions. At the meeting, David’s siblings reacted defensively and angrily. I assume much of that stemmed from guilty feelings. They made comments such as, “You don’t understand the pressures of our jobs.” The meeting was stressful and emotionally exhausting. I had to leave early to babysit grandchildren, and the meeting continued with David, his siblings, and now their mother, too.
After I left I felt anxious and sick to my stomach. I was worried that the meeting set us all back more than it had moved us forward. But later, when David joined me for our overnight babysitting stint, he expressed that he was satisfied with what had occurred. He said that the process was cathartic for him; that at least we got a response out of his siblings. Scott had apologized for the remarks he had made to me, and everyone agreed that ineffective communication was the main problem.”
As Debbie also says in her entry Person-Place-orThing, “In my everyday quest to devour as much information on the subject of Caregiving, I run across all sorts of articles. Debbie is certainly right on again. And I will add that it a 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.
Barbara Matthews
Posted: February 20, 2014 | Author: Barbara G. Matthews | Filed under: Miscellaneous | Tags: caregiving, caregiving-book, questionnaire |
The material for “What to Do about Mama?” was gathered from caregivers who responded to the following questionnaire. Reading the questionnaire will get you thinking. Reading “What to Do about Mama?” will help you formulate a plan of action.
Caregiver Questionnaire:
Wouldn’t it have been great to have a “manual” that would have given you an idea of what to expect in your role as family caregiver?
We are interested in writing a book about caregiving based on our own experiences as well as yours. The purpose of the book is to help others by sharing caregiving experiences. Additionally, this is an opportunity for you to express feelings you may have been silently harboring.
Thank you for your willingness to answer the following questions. Please use anecdotal examples to clarify your responses when possible.
If there are questions that don’t relate to your experience, feel free to leave them out. You may answer anonymously; no one will be identified in the book. Thank you for your contributions and your cooperation.
1. For whom do/did you provide care? What is/was your relationship?
2. How did you become involved in your role as caregiver?
3. Which other family members are/were involved in this caregiving relationship? What are/were their roles?
4. Were these roles discussed and planned ahead of time, or did they just evolve?
5. How well do/did other involved parties fulfill their responsibilities and your expectations?
6. Describe your role as caregiver and how it changed/has changed over time.
7. What actions did you take in order to meet changing/increasing needs?
8. Identify unforeseen areas of difficulty and how you handle/handled them. Did you enlist outside help from agencies, paid helpers, volunteers or
others?
9. How would you describe your overall caregiving experience? What are/were the positives and negatives?
10. How has caregiving affected your physical and emotional health? What have you done/did you do to cope with the stresses of caregiving?
11. Did you join a support group or receive counseling? If so, please describe how well support groups/counseling fulfilled your needs and
expectations. What do you see as the difficulties and the benefits of support group participation or counseling?
12. How have family relationships changed with all who were involved?
13. How did you feel about caregiving initially, and how did your emotional reactions change before, during and after your caregiving experience?
14. How do you feel the emotions of the other concerned persons affect/affected their actions?
15. Looking back, would you assume your caregiving role again? What would you do differently?
16. If your role as caregiver has ended, have there been residual difficulties or challenges that resulted from your caregiving responsibility?
17. How were finances handled? Were you compensated for your role as caregiver? Did financial issues create hardship or conflict for you and other
family members?
18. Have there been difficulties regarding the logistics of allocating belongings and settling an estate?
19. What recommendations would you give to others who find themselves in caregiving situations?
20. Please address any issues or concerns that weren’t covered by the above questions.
Barbara Matthews
What to Do about Mama? 