As I began to glance at Pamela Wilson’s Sep 22, 2021 Podcast: Hard Truths About Caring for Aging Parents – The Caring Generation® the hard truths started jumping out at me right and left. I had learned about many of those hard truths the hard way—by first-hand experience
Hard Truths About Caring for Aging Parents – The Caring Generation® (pameladwilson.com)
In this blog post, I will identify some of those hard truths and then share how they impacted my own caregiving experience and how I anticipate they will impact me and my family in the future.
- Decide how much interaction you want with your parents throughout your life. The decision to remain living in the same town as your parents or move away affects caregiving responsibilities later in life.
This decision is not always yours to make. Both my mother and my husband’s parents chose to move away from us when they retired to Florida. My mother and my father-in-law both died suddenly; there caregiving needs were never very great. My mother-in-law, however, had a goal of living to 100 and did her best to accomplish that goal, despite having a number of serious health conditions. When she became unsafe living on her own, she moved closer to us. My son and two daughters were all married with families, but they always found time to be supportive of their grandmother. When her caregiving needs became much greater, she moved into our home with me as her primary caregiver. My children continued to be supportive. (My mother-in-law died just short of 90.).
Although my husband chose not to move away from our children, our older daughter and her spouse decided to relocate from our hometown when their kids were old enough that they no longer needed as much family support. Since then, she made it clear she does not intend to be a caregiver. Her younger sister thanked me for being such a good example when I cared for her grandmother. I certainly encourage the children to be supportive of each other when the time comes that we may need some help.
- Be aware that life cycle transitions affect the timing and care of aging parents. Few children expect to spend their retirement years caring for aging parents. Still, many retired adults become caregivers—if not for a spouse, then first for aging parents. Caregiving responsibilities often pass from one generation to the next. Although some families may believe in the responsibility to care for aging parents—is there another way to make sure parents receive care and you are not the only caregiver? There isn’t one right or wrong way, but one solution is for families to think about caregiving differently, from a whole-family perspective that take lifecycles into account: having and raising children, caring for aging parents, caring for a spouse, and caring for the caregiver.
- Family culture has a strong impact on how families handle the issue of caregiving. Is the family individualistic, believing in self-sufficiency or collectivist, setting aside individual achievement to work toward the good of all in the family? Does the family talk openly about the unpleasant realities of life and death? Some elderly parents may refuse to talk about legal planning or burial plans, whereas some adult children find talking about the death of a parent too emotionally traumatic. A family generally benefits if they can discuss sensitive topics openly as a recurring topic instead of a subject of hesitation and disagreement.
This was one of the biggest challenges when I was my mother-in-law’s caregiver. As one sister stated, “We never talked about anything. We just moved on.” When we came to the point that I was coming to a point of resentment because of their comfort with my assuming the role, which diminished their need for sacrifice, I forced the issue by insisting on a family meeting and requesting greater shared responsibility. Although that eventually led to more involvement, it also led to hard feelings that still exist ten years after my mother-in-law passed away. Setting boundary lines increased their participation and helped rid me of resentment, but I also think that it increased theirs—but there are times that difficult decisions must be made in order to avoid even greater consequences.
- Caregiving and care costs affect family income. It’s important to have conversations about the cost of caregiving ahead of time. Potential caregivers need to consider how it will impact their educations and careers. If you don’t talk about caregiving ahead of time, you will find yourself learning after you are embroiled in the role. Often families move in together to provide care for an aging parent with the thought of saving money. Too frequently, however, when a son or daughter gives up their job to be a caregiver, they become financially strapped. Sometimes caregiving appears to be an opportunity to escape from a job or a boss you hate.
Because I quit my job when my mother-in-law moved into our home, she paid the mortgage (equitable to the cost of her apartment in the independent senior living facility where she had been living) because that is what my salary had covered previously. She also named my husband as her life insurance beneficiary to compensate for the loss of social security and pension monies from my early retirement. Although my husband’s siblings had agreed to the arrangement ahead of time, it did not seem to settle well with them when the estate was settled.
- Caregivers often give up or trading parts of their lives to care for aging parents. Should you? For how long? The cost is great when you were the only person to step up.
Today, as I age and my health declines, I often feel that I squandered the last best years of my life as my mother-in-law’s caregiver. At those points my counterpart sister-in-law’s comment comes to mind: “My priority is my children. I am only a daughter-in-law.” What to Do about Mama? p. 20
- A lack of planning affects family relationships. When there is no planning because the topic of caring for aging parents is something no one wants to talk about, unpleasant and unwanted decisions are not avoided. Caregiving becomes a process of action and reaction that elicit a response only when serious concerns are manifested, or a crisis moment occurs. Ripple effects are then created that affect every generation in the family.
A few years ago, both my daughter-in-law and my son-in-law’ mothers were diagnosed with cancer. The first family spoke openly of the diagnosis. She opted not to undergo treatment and after five months, passed away.
“There was all this anticipation of need when the diagnosis came, but that need did not actually manifest itself much until the last few weeks of my mother’s life. She was fortunate to live comfortably until then, and was indeed in decent enough shape, that she was still making coffee for my dad every morning, up until those last few weeks. Our help for her was largely emotional support and keeping true to her wishes of spending as much time with family as she could. My mother waited until she’d checked the last items off her “To Do” list—a granddaughter’s birthday, a dance recital, and Dad’s hemorrhoid surgery—and then she stopped eating. She passed away on Father’s Day, surrounded by her husband and children who loved her so.” What to Do about Mama? P. 280
When I offered my son-in-law a copy of “The Conversation Project” which encourages dialogue between parents and children, he was angry with me, calling me “insensitive”. His mother opted for treatment, but sadly, the result was the same. Without going into the details, I think it would be accurate to say that her experience was in many ways, quite different that the one described above.
- It’s never too early to make a plan. Consider how caring for a parent will affect you, your marriage, your family, and your career. There are times when you must make difficult decisions in order to avoid even greater negative consequences.
I found from personal experience that Caregiving isn’t a short-term project. It can go on for a year, three, five, ten, twenty, or more. If you are proactive about making choices for on-going care you may avoid the caregiver burnout and frustration—the sources of emotional stress that can cause one’s health to decline. I know it did for me.
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