At the website http://www.AgingCare.com, TadBoyPA1 writes:
I am so blessed to have my mother Ann still around. Her goal is to see her grandson ordained a deacon and 1 year later a Catholic priest. My mother is a fighter and I do believe she will make it to that time and to see him achieve his goal. Faith and love will get her through and all of us caregivers through the rough times. Everyday I have with her I am truly blessed!
TadBoy’s story about his mother’s goal reminded me of a similar story about my mother-in-law. I commented in turn:
My mother-in-law had many serious health conditions. But like the Energizer Bunny, she just kept “going and going and going.” I attribute this to her goal setting, the major one being to see her last grandchild graduate from college. This, too, became my goal as her primary caregiver. It required doctor OK’s, special 02, and overcoming family dissention, but we did it! She had a great time.
Read the complete graduation story on pages 9-11 in “What to Do about Mama?”
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.
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.
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
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
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.
I heard from a friend the other day; she is a caregiver for her elderly parents. My friend commented, “The hardest part is to let go of the expectation that they will ever be the fun, easygoing people they used to be. And I do not want the years we have left with each other to be filled with discord.”
Expectations. Hoo boy! That’s a big one—and a topic that I address multiple times in my book, What to Do about Mama? Here are a few of the statements about expectations that appear throughout the book:
• Caregiving is fraught with a lack of control over both the situations that occur and the people involved. Our expectations of others were unrealistic; our expectations of ourselves were self-defeating. p. 32
• As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown? p. 72
• The big trip-up occurs when you discover that the realities do not meet your expectations and you begin to feel disappointment and frustration. p. 87
• Once again, I stress expectations—just because you do what you think is best, there’s no guarantee that the results will be consistent with your intent. p. 130
Following are excerpts from two of the caregiving stories that appear in What to Do about Mama? They both point out that expectations and realities are most often very different.
June’s Story: “I was such an idealist about this opportunity to provide my mother with care. I wanted her to live near me. I wanted this precious time together to get reacquainted and do all those things that had made for such great memories with her as a kid. Sadly, that wasn’t to be.”
Katrina’s Story: “My role started out as an excited, happy daughter who anticipated the joy of having Mom close by for the first time in my married life. I looked forward to involving her with the many friendships and activities in my church and to seeing her almost every day for a few minutes on my way home from work.” And later, “My overall caregiving experience has nearly killed me. The stress has been overwhelming so many times.”
Readers: Do you have personal examples to share?
Check out http://eldercareathome.org/blog/ post, “Becoming a Caregiver and Planning for the Future.”
It’s always a good idea to learn and prepare ahead of time. Explore further by reading the real-life stories of 35 caregivers in “What to Do about Mama?” by Barbara G. Matthews and Barbara Trainin Blank, which addresses caregiving through the telling of a wide variety of caregiving experiences. You will be glad you did.
I saw a good article today on Penn Live, Harrisburg, PA, entitled “Measure financial impact of quitting job to care for mom: Linda Rhodes.” See: http://connect.pennlive.com/user/lrhodes/posts.html. The article rang true because this is what I did to take care of my husband’s mother in our home.
Linda Rhodes discusses factors that need to be considered before quitting a job to provide elder care, number one being the financial impact. She cites the MetLife study of Caregiving Costs to Working Caregivers, which puts the total financial impact of elder care on the individual female caregiver in terms of lost wages, Social Security and pension benefits at $324,044.
These numbers must be based on averages—I certainly don’t know precisely how much we were financially impacted by my quitting my job. We did have a financial agreement with my mother-in-law (and agreed to by my husband’s siblings) to cover the loss of my income—which was essential to our cost of living. I’m sure the agreement did not cover the full financial loss, but we felt that it was fair, and that this was something we could do for his mother. See my book, What to Do about Mama? p. 8 for details.
Many of the other issues that Linda Rhodes addresses also appear by example in the book.
• Caregiving is a family affair:
WTDAM Family Involvement and Support p. 55
WTDAM Caregiving Contracts p. 61
• There are all kinds of ways you can help:
WTDAM Deborah’s Story p. 98
• Other options:
Reverse mortgages WTDAM p. 144
Caregiver Contracts (and elder care lawyers) WTDAM pp. 140, 143, 145
• Family Medical Leave (FMLA) WTDAM pp. 144, 169
• Long-term care insurance WTDAM pp. 45, 143, 144
• Inheritance issues
WTDAM discusses sharing responsibility and inheritance “equally” p. 149.
What to Do about Mama? A Guide to Caring for Aging Family Members, a collection of caregiving stories written by caregivers for caregivers, also addresses aspects such as: The emotional journey; Impact on the family; Sharing responsibility; Managing finances; Maintaining dignity; and so much more.
See: Help! Aging Parents: http://www.helpparentsagewell.blogspot.com for complete conversation about “Aging Parents and Us–as Caregivers: Know Thyself.”
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.
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.
On page 160 of our book, What to Do about Mama? by Barbara G. Matthews and Barbara Trainin Blank, it states:
“I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.
I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.”
The Conversation Project Starter Kit will certainly facilitate the discussion: http://www.theconversationproject.org/
Also visit What to Do about Mama? on Facebook: Visit https://www.facebook.com/whattodoaboutmama
What to Do about Mama? is a guide to caring for aging family members based on personal caregiving stories.
WHY BLOG? The purpose of this blog is to discuss caregiving experiences, many of which are addressed in “What to Do about Mama?”
Words that describe caregiving (Can you add more?):
A Ability ADVOCACY Appreciation Autonomy
R Resourceful Reliability RESPONSIBILITY
E Education EMPOWERMENT Encouragement
G GRATITUDE Growth Grief
I Inspiration Ingenuity INDEPENDENCE Initiative
V Values VISION Viewpoints Validation
I Individuality Integrity Intuition INSIGHT Imagination
N Needs Nonstop NURTURING New-Normal Notable
G Growth Guidance Gratification GIFT