Attitudes about Caregiving Education

I don’t need it!
I’m too busy!
I’m so over it!

Family Caregiver Education – The Caring Generation®
by Pamela Wilson May 30, 2020
The Caregiving Generation Talk Radio:  Caregiver Training

Honestly? Caregiving can be a real bummer. Although nobody wants to talk about being or needing a caregiver, it is a subject that we can no longer ignore.  The COVID-19 pandemic has made it abundantly clear: 1) Adult children are worried about their parents getting the virus; and 2) Caregiving is one more item to add to the “Things to Do Better” list for future generations.

After my 7-year stint as a caregiver, I wrote What to Do about Mama?  I thought that people just might benefit from what I had learned from both my job as an Assessor at the Area Agency on Aging and my caregiving experience. Since the book was first published, I have found that caregiving is a topic people avoid—like the plague.  And of course, there’s now a lot of irony in that statement. 

On her Caregiving Generation Talk Radio program, Pamela D Wilson, stresses the importance of  Family Caregiver Training and Caregiving Courses.  The following is a synopsis of her discussion peppered with some of my own thoughts and views. 

Caregiving is an unexpected experience—something we don’t usually plan for until a health care crisis occurs.  Like the pandemic (or a plague) caregiving needs can come on suddenly and find you unprepared.  Adult children may not even realize they have taken on the role of caregiver because helping parents by picking up groceries or prescriptions is not how they define the term.   But then needs escalate and the list grows to include such tasks as providing transportation to doctor appointments, assisting with money management and bill paying, providing meals, and making legal, medical and care decisions. Working caregivers who become distracted and are unprepared can feel like life is reeling out of control, not knowing where to turn for help.  Even today, caregiving is viewed as a family responsibility. The workplace may not recognize how employees are effected by their caregiver responsibilities or how the stress impacts the workplace.

Developing a Care Plan Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs. Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.

What to Do about Mama? pp. 152-153

It is Pamela Wilson’s position that caregiving courses should be made available through corporate employee health and wellness programs—much like maternity leave and support programs for families raising children.  Family caregiver education and support not only minimizes unexpected and disruptive crises by making a significant difference in the lives of caregivers and their elderly parents, it also helps companies achieve health and wellness program goals of reducing health insurance costs and use.  I would add here that family caregiver education would also be a beneficial addition to life skills curriculums in our schools.   

My mother’s death eased things for me at work, but only to the extent that I realized my boss so resented my need for “flexibility” of hours during my mother’s lengthy end, that our relationship was over. Luckily, an advocate of mine in senior management had another position she felt would be ideal for me—and she offered it to me at my same salary. So, I took it. It’s been a whole new lease on life! I really feel energized, and I’m hoping to keep it until I’m seventy. (I had to take out some loans to finance all the help I had, so this will expunge all that debt by the time I finally do retire.) If I had been allowed to work from home, I would not have needed to take out loans, but my boss at the time would not even consider it. That still hurts. I was literally paying people to watch my mother sleep—something I could have done while I worked from home. But, getting over this means getting over the anger: Get mad; get over it!

What to Do about Mama? pp. 293-294

Pamela Wilson has developed a family caregiver education course. 
Taking Care of Elderly Parents: Stay at Home and Beyond consists of the following:

  • Module 1 Managing Emotions, Family Relationships and Elderly Parents who Refuse Care
  • Module 2 Signs Elderly Parents Need Care: Creating Strategies and Starting Conversations
  • Module 3 Activities of Daily Living, the Effects of Aging on Physical Activity
  • Module 4 Home Safety for Seniors
  • Module 5 Stay Healthy: Daily Routines to Support Positive Care for Elderly Parents
  • Module 6 Memory Loss
  • Module 7 Paying for care for elderly parents
  • Module 8 In Taking Care of Elderly Parents: Stay at Home, and Beyond

While I was listening to Pamela Wilson’s podcast, I was gratified to note that her curriculum addresses a great deal of the material contained in What to Do about Mama?  Expectations and Realities of Caregiving.  This is not a book by experts—but a book based upon the real-life experiences of caregivers in the trenches.  In my opinion, family caregiver education should be based on theory and experience because both perspectives have relevance.  

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—or whether you place equal weight on both. Establish common goals. Divide responsibility based on the strengths and abilities each of you brings 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.

What to Do about Mama? p. 155

Family Caregiver Education creates awareness and provides helpful information. Prepare today to be ready tomorrow. For those people who avoid the subject, becoming a caregiver will be a shock. For those who face it, you will know what to expect and the road will be smoother.

[We} have completed our wills, living wills, powers of attorney, and medical powers of attorney. And because it befits us all to have the “difficult discussion” well before the time of need arises, we have completed the questions found in The Conversation Project Starter Kit and discussed them with our children.

What to Do about Mama? p. 302

Hugs I am Missing

I’m glad I still have your hugs, Grandpa, but we are sure missing the others.

As Our Parents Age
Timely Topics on Aging for Adult Children & Everyone Else

The following article on the As Our Parents Age website totally hits the nail on the head summing it up perfectly with: “But the inability to have interaction with much-loved family members? Excruciating.” However, I would like to add an additional perspective.

When my brother and I were young, our father went to the Mayo Clinic for treatment of advanced Non Hodgkins Lymphoma. His diagnosis had been kept secret from him, as was common in the late 1950s-early 60s. He was informed of his condition while there, and died a short while later. We never spoke to or saw him again. Now, many decades later, my brother is ill. Because of COVID-19, I am tormented by the fear that I will neither see nor embrace him again. (This is certainly a scenario that too many families are experiencing in our world today.)  He, too, is on my list of who I am missing.  

Caregiving in the Time of CoVid-19, #18: Missing Children and Grandchildren

Ask just about anyone my age to describe what is most difficult about this increasingly long period of CoVid-19 social distancing (63 days at my house), and just about everyone mentions their separation from adult children and grandchildren. And my friends with new babies in the family ache to reach out and touch them.

It’s frustrating, and it hurts. Worse still, there is no end on the horizon to this distancing, at least not for grandparents. Six months? Twelve months? Eighteen months? No one knows.

Sure we talk with our families on FaceTime, and yes, we laugh and mail trinkets, books, and birthday presents. But in reality, there is no substitute for being there with them. Friends tell me that every call makes them worry about one thing or another or consider potential ways to be helpful to family members. Yet, we cannot do anything.

And today, on a Zoom discussion about the pandemic, medical and epidemiology experts, noted that until there is a vaccine if we do see our grandchildren, we may have to refrain from hugging.

Seriously? Can grandparents really refrain from hugging? Grandparenting is defined by hugging.

Staying home hasn’t been that difficult. Spending less time doing errands is not a big challenge. Finding things to do that fill up the time — easy. Exercising is a cinch since I have all the time in the world and can take pictures of spring flowers. Postponed vacations?  Not a big deal. Connecting with friends via text or Zoom or email, or on an old-fashioned phone does not substitute for face-to-face, but it works during this time of social distancing. Watching or listening to Dr. Fauci, Gov. Cuomo, and Prime Minister Trudeau — great fun, and I learn so much. I am fortunate and privileged.

But the inability to have interaction with much-loved family members?  Excruciating.

Another Free Kindle Weekend

Free Kindle download TODAY, May 15th through SUNDAY, May 17th

Mother’s Day weekend reminders:

What to Do about Mama? Expectations and Realities of Caregiving


First, we would like to thank you for supporting the second edition of What to Do about Mama? To show our appreciation, WTDAM will be available free to download on Kindle throughout this upcoming Mother’s Day weekend. WTDAM may not be a book that you WANT, it is a book that you NEED–even if you think you don’t need it yet, or that you are too darn busy, or you just want to put it all behind you. What to Do about Mama? not only has a lot of useful information, but also a great deal of validation for the thoughts and feelings related to both sides of caregiving—providing and receiving.

After the Pandemic: Visions of Life Post COVID-19

After the Pandemic: Visions of Life Post COVID-19   has been released. Twenty-five Sunbury Press authors contributed twenty-seven chapters about the possible impacts of the COVID-19 pandemic on society. Based on their experiences in a variety of fields, they provide their projections about the changes facing us, many of which have already been underway for some time. It is available to online and brick and mortar bookstores worldwide, including through the Sunbury Press store, Barnes and Noble (online), and also Amazon. 

SunburyPressBooksShow–COVID-19 and the Family

Saturday, May 9, 2020 @ 9:00 AM on the BookSpeak Network
Panel Discussion with Lawrence Knorr, Publisher, moderating.

Sunbury Press Books Show–COVID-19 and the Family

Upcoming Events with Sunbury Press

Event One:
What To Do About Mama? FREE Kindle this Mother’s Day weekend

In celebration of Mother’s Day,
What to Do about Mama? Expectations and Realities of Caregiving
(Kindle Edition) is being offered FREE
Friday May 9th through Sunday May 11th, 2020

She took good care of you–
Show her how much you love and care for her, too.

Event Two:
SunburyPressBooksShow–COVID-19 and the Family

Saturday, May 9, 2020 @ 9:00 AM on the BookSpeak Network
Panel Discussion with Lawrence Knorr, Publisher, moderating.

Sunbury Press Books Show–COVID-19 and the Family

Twenty-five Sunbury Press authors contributed twenty-seven chapters about the possible impacts of the COVID-19 pandemic on society. Based on their experiences in a variety of fields, they provide their projections about the changes facing us, many of which have already been underway for some time.

  • Barbara Matthews – COVID-19: Through the Eyes of a Grandmother
  • Bridget Smith, Bridget – Dreams Deferred
  • Iris Dorbian –  The Great Equalizer
  • H.A.Callum – Fighting Solo: Covid-19 and the Single Parent
  • Joseph Mazerac – An Essential Optimist–covid-19-and-the-family

After the Pandemic

Sunbury Press has just released a book about the coronavirus. It is a collection of essays written by Sunbury Press authors from the perspective of life after COVID-19.

Caregiving contingencies

See the DailyCaring article:
Coronavirus and Caregiver Mental Health: 8 Coping Tips

  1. Maintain a regular daily routine and healthy lifestyle
  2. Improve sleep
  3. Focus on what you can control and limit “what if” thinking
  4. Give yourself a break
  5. Plan for your older adult’s care in case you get sick
  6. Take mini breaks throughout the day
  7. Remember, you are not alone
  8. Use humor to relieve tension

Each tip contains suggestions for how to accomplish the recommendations with additional links provided.    

I relate to #5 in particular.  Having a contingency plan for caregiving was something we overlooked when I took on the responsibility of being a fulltime caregiver for my mother-in-law.  Still in my 50’s at the onset, I was a healthy and energetic.  I did not foresee how the responsibility and the stress of escalating needs would take such a toll on my physical wellbeing. 

Undertaking a caregiving role is sometimes a very gradual process, but in the case of a crisis situation, it can be very sudden. In either case, caregiving responsibilities usually escalate as needs multiply over time. The less able our loved ones become, the greater their sense of independence lost. And as needs escalate, so does conflict. Caregivers sometimes begin by providing support in such areas as yard work or home repairs, followed by assistance with IADLs: telephone communication, housekeeping, laundry, food preparation, transportation, and managing medications and finances. Perhaps a greater sense of dependence involves the need for support with ADLs: bathing, dressing, grooming, ambulating, transferring, toileting, and feeding. The list of caregiving tasks grows and grows; the specifics are customized to each individual situation. When I was no longer able to care for my mother-in-law because of my knee replacement surgery, I wrote a job description for our nephew, which, in addition to the above-listed responsibilities, included the following tasks:
*Maintain an updated medical history to take to all doctor appointments
*Maintain hearing aids; help to put them in
*Manage oxygen
*Perform wound care
*Order medications, medical supplies, and equipment
*Order incontinence products
*Take to hair and nail appointments
*Provide opportunity for recreational activity
*Schedule and direct help—aides and hospice personnel

What to Do about Mama? p. 162

It is important not to make promises and commitments to the point that there is no way out. 

A Sad Reality

See the source image
Alone. . .but not unloved

When my daughter decided that we needed to social distance, a morose thought immediately went through my head. “If I get Coronavirus and die, I will never be in the same room, or get to hug my children or grandchildren again.”  Do you think I’m being overly dramatic?  Read the article below.