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.
Cynthia Hickman gets right to the point in her August 16, 2021, blog post of “Your Proactive Caregiver Advocate: Dr. Cynthia Speaks!” and it’s a valuable point, to be sure.
Take the Blinders Off-Your Parents Are Aging!
Cynthia Hickman’s life-events regarding the death of her parents are similar to mine. Her father died in 1965 at the age of 46, whereas her mother did not pass away until 2017 when she reached a more advanced age. My father died in 1963 at the age of 48—and the circumstances of his death were a major formative factor in my life. My mother died in 1998 at the age of 77, which—although a more “acceptable” age—is one that heightens my own awareness of mortality, since I am now 72.
Cynthia Hickman talks about the circle of life and points out that the process of our bodies breaking down is nothing more than a natural part of life’s cycle. She goes on to ask the question:
Should We Prepare or Should We Wait?
It is her position that “we must remove the blinders and deal with the reality of our family circle.” She recommends that we acknowledge the actions and patterns of those we love; that we are proactive and self-aware of our roles, and that we embrace readiness rather than run from it.
I have had some major life experiences that form my perspective—and I must report that, like Cynthia, I have a strong belief in “prepare”. Although you can never be in “control” of everything that happens in life, by adopting Cynthia’s mode of thinking you will find yourself in a better position to step into caregiving with less stress and more confidence in your ability to handle life-challenges.
When you avoid confronting difficult topics—often to the point of denial—they only become more challenging because you are ill-prepared. Furthermore, you will create a greater burden for your own children when the time comes that you are in need of care.
Following is a list of my own past blog posts that deal the topic of being prepared.
- Attitudes about Caregiving Education
- The “We don’t need it yet” phenomenon
- Thoughts about Denial
- More about Denial
- Becoming a Caregiver and Planning for the Future
- Burdening Our Kids–Revisited
- Lickity Splickity or Little by Little?
- It Pays to Prepare
- Processing the Pictures
- The Conversation Project
Ambushed by Eldercare? You’re Not Alone
7 strategies to help you cope
Source: Google Images labeled for reuse
Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.
More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.
“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,” says Barbara Trainin Blank, author, with Barbara Matthews, of What to Do about Mama? A Guide to Caring for Aging Family Members (2013, p. 43).
Blank, a professional writer accustomed to multiple deadlines, admits that, “Taking care of my mother may have been one of the most difficult things I’ve ever had to do in my life” (2013, p. 34). Her mother lived 180 miles away, her brother lived much closer, but in many families the weight of caregiving often falls upon one person.
Cascading stress, sleeplessness, grief, guilt, family conflicts, anger, resentment, exhaustion, and burnout—caregiving takes its toll. Psychologist Dale Larson calls this falling into “the helper’s pit” (1993, p. 38). How to stay out of the pit? Larson says to stop blaming yourself if you feel overwhelmed by caregiving and ask instead, “What can I do about this situation?” (1993, p. 55). Drawing insights from their own experience and a wide range of caregivers, Matthews and Blank offer seven powerful strategies:
- Start Planning. If you have older family members, begin asking about their values and wishes for the years ahead. Do they need to scale down, move into a more accessible home, closer to family members, or into a continuing care community? Determine what needs to be done and the support caregivers will need to handle these challenges. If your relative is intent on staying at home, who will pay the bills? Take this person to the doctor? Assist with meals and the activities of daily living?
- Get Community Support. Find out about support services in your relative’s community, such as the local Agency on Aging. Check out senior services and information online such as ElderCarelink (link is external)or SeniorsList (link is external).
- Reach Out. Network with other family members and your loved one’s neighbors and friends. Check out possible support from your relative’s church or synagogue. And consider joining a caregivers’ support group to share information and personal support.
- Take Care of Yourself. Too many caregivers wear themselves out, getting sick themselves. Watch for signs of stress and burnout. Are you:
- Feeling run down and exhausted?
- Having trouble sleeping?
- Easily annoyed?
- Getting sick more often?
- Having trouble concentrating or remembering things?
- Becoming socially isolated?
- Feeling helpless, depressed, or overwhelmed?
Caregiving is a serious responsibility, but don’t become so engulfed in it that you stop being yourself.
- Make time for a regular stress management practice. Barbara Trainin Blank says she dealt with the challenge of caregiving by walking in the mornings with a friend. Regular exercise is good for both body and mind, relieving stress, activating our immune systems, and helping dispel depression (Rethorst & Trivedi, 2013).
- Take regular breaks. Matthews and Blank emphasize the need for regular “respite care,” especially if you are caring for your loved one’s daily needs. If possible, recruit other family members. Check out senior day services and respite referrals at the local senior center.
- Keep up with your own interests. Blank stayed in touch with friends and participated in community groups—relieved to spend time with people who were not dealing with the chronic stress of caregiving. She continued to do some of the things she loves: creative writing projects, watching old movies, and donating to causes she believes in.
As Matthews and Blank (2013) found in their surveys of more than 30 caregivers, the key is to balance your own needs with compassionate care and realistic problem solving. How you handle the challenge of caregiving will make a major difference in many lives, including your own.
Matthews, B. G., & Blank, B. T. (2013). What to do about Mama? A guide to caring for aging family members. Mechanicsburg, PA: Sunbury Press. http://www.amazon.com/What-Do-about-Mama-Members/dp/1620063158/ref=sr_1_1?s=books&ie=UTF8&qid=1427846005&sr=1-1&keywords=what+to+do+about+mama (link
Larson, D. G. (1993). The helper’s journey: Working with people facing grief, loss, and life-threatening illness. Champaign, IL: Research Press.http://www.amazon.com/Helpers-Journey-Working-Life-Threatening-Illness/dp/0878223444/ref=sr_1_1?s=books&ie=UTF8&qid=1428530954&sr=1-1&keywords=The+Helper%27s+Journey
Rethorst, C. D., & Trivedi, M. H. (2013). Evidence-based recommendations for the prescription of exercise for major depressive disorder. Journal of Psychiatric Practice, 19, 204-212.
Diane Dreher is a best-selling author, personal coach, and professor at Santa Clara University. Her latest book is Your Personal Renaissance: 12 Steps to Finding Your Life’s True Calling.
The Resentful Caregiver
May 12, 2014 · By AnnMarie
I wanted to be the kind of caregiver who never got frustrated, annoyed, angry or resentful. I aimed for perfection and heroism.
It wasn’t going so well.
First, I saw my mother-in-law go to her daughter’s after staying with us for 3 ½ years. As her dementia worsened, my frustration rose. I had my own parents to look after also, although not nearly the way I had to with my mother-in-law. In spite of my frustration, I wanted to be like the Old Testament Ruth who stayed by her mother-in-law’s side and cared for her in her old age as if caring for her own mother. I wanted to be like my friend Donna who welcomed her husband’s uncle into her home and kept him there until he passed away. Now, she is preparing to have her mother-in-law move in.
But I am not like Ruth or Donna. I am me: anxious, easily annoyed, angry that I’m the only daughter, angry that my brothers live so far away and have no idea what I go through. I like to throw pity parties for myself on a regular basis. I like to recount the day’s drama with my husband, daughters, or anyone who will listen.
I knew I needed to let go of these emotions—especially the resentment towards my brothers. It was eating at me, making me depressed, and affecting my relationships with those I loved. Intellectually, I knew it was wrong and unhealthy; emotionally, I wanted to keep throwing pity parties and be angry at everyone. I kept thinking back to a long-ago conversation I had with my priest on another topic, who helped me understand that life is not meant to be a continuous day at the beach (and I love the beach.) Sometimes you have to come home, and all you have to show for it is sand in your bathing suit. One of my favorite Scripture verses comes from 2 Corinthians 12:9:
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (English Standard Version)
I love this verse because it’s a wonderful reminder that we are meant to make sacrifices throughout our lives, and in doing so, we become stronger in ways we never imagined.
I needed to embrace this Scripture verse as my own. I read articles and books. I searched the internet for resources. I printed out articles and highlighted the parts that I thought held some promise for me. I prayed for God to get me through the day.
Then it happened–only by the grace of God–I was ready to begin to let go. Somehow the intellectual part of me convinced the emotional part that I needed to turn over a new leaf. I needed to stop being a whiner, a baby, a five-letter word that starts with a ‘B’.
By the grace of God, I am beginning to be okay with the fact that one brother has gotten out of helping me by leaving this world, and the other two live 1,000 miles away. I have started reminding myself that “it’s only for a season”, as our lawn maintenance man (of all people) told me one day. I also realized that other living/caregiving arrangements wouldn’t necessarily be any easier. I can’t expect a hired hand to be responsible for my father’s medical decisions and follow-through. I would definitely get tired of driving somewhere to visit or assist my parents if they didn’t live with me. I am beginning to process this new outlook, and I’m trying to step cautiously: I know there will be ups and downs, good days and bad.
Letting go of anger, frustration and resentment, however, has lifted a heavy stone from my chest. It has lightened me, and reminded me how good peace feels when it fills your heart. I know, however, that the devil will try to tempt me down the road, especially when I’m least expecting it. I will have to put up a good fight. But by the grace of God, I am finally ready to try.
Ahhh….RESENTMENT. Here are some comments made in my book, “What to Do about Mama?”
In addition, I was faced with perhaps an even more distressing aspect of caretaking—one with which no doubt many of you are familiar, whether you’re caring for a loved one short or long distance—and that is resentment toward other family members for not shouldering more of the responsibility. Not that I necessarily expected a 50-50 split, but a more equitable one would have eased my burdens considerably. (WTDAM p. 42 )
These “non-child” relationships can bring a whole new set of emotional conflicts, such as difficulty getting along in unfamiliar roles or resentment for making sacrifices that the “children” are not willing to make. (WTDAM p. 49)
Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress? (WTDAM p. 73 )
There’s a resentment of my siblings happily living their lives without the worry of what’s actually going on not only in my life but also my dad’s. (WTDAM p. 79 )
Don’t set your bar too high in comparison to the standards of other involved parties. Set boundary lines and stick to them. Taking on too much commitment and making too much sacrifice breeds resentment. (WTDAM p. 192 )
Now that our caregiving has ended, the relief is so palatable that I have no more anger, resentment or bitterness left. I do not hold grudges, but I am a little wistful that the “closeness” of the past is probably in the past, and I am unsure of any potential for the future. (WTDAM p. 113)
I agree with you, AnnMarie, that it is important to let go of negative emotions, which is, indeed, not an easy task. It can help to take some concrete steps: 1) establish realistic expectations; 2) set boundary lines, and 3) communicate with the “others” to formulate a joint “contract of commitment.”
Click on the Patriot-News link below to see a Doonesbury cartoon about role reversals:
– The Patriot-News.
A response to an AgingCare.com article:
http://www.agingcare.com Home>>Caregiver Support>>Family & Relationships>>Articles>>Switching Roles: Coping with Your Rebellious Aging Parent.
When I was an Assessor for the Area Agency on Aging I often met with senior women and their daughters. When I directed a question to the senior, it was not uncommon to hear the response, “Ask my mother here,” while indicating her daughter. Clearly they were referring to the issue of “role reversal,” which can be petty doggone tricky to navigate.
In the AgingCare.com article, Switching Roles: Coping with Your Rebellious Aging Parent,
Carolyn Rosenblatt states: “You can’t just let a parent with signs of dementia or other significant memory problems go on as if nothing were wrong, even if she gets upset with you. At some point, the adult child who loves a parent must step in. You may end up setting limits, making new rules, or taking over certain decisions. This is not easy for most people. We are so accustomed to our parent making her own decisions, that to dare to tell her what to do is very uncomfortable.”
Carolyn is correct that reversing roles with parents is very difficult. But it is not always clear cut as to when to do so. When it is determined that you must step in, and the parent-child line becomes fuzzy, it is always important demonstrate respect for everyone’s roles.
An initial question to consider is: What takes precedence? Autonomy or safety? If the senior’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. After all, who doesn’t want to remain in the driver’s seat of life?
It is imperative to respect your loved one’s dignity—it is, after all, empowering to retain the ability to make choices and decisions. Show respect for your care receivers’ autonomy by seeking opinions and preferences throughout the care-planning process. Promoting as much independence as possible is key. Furthermore, caregiving responsibilities generally 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.
Two huge problem areas that Carolyn Rosenblatt mentions are driving and financial management. These are both referred to in “What to Do about Mama?” For example:
- When our parents lose their ability to drive they require assistance with transportation, shopping, and running errands. And of course, since driving is synonymous with independence for most seniors, this issue may cause particularly intense conflict. As one son recalled: “When my father insisted that my grandfather stop driving, Grandpa, a generally sweet and mild-mannered gentleman, began to call Dad on the phone to curse him out soundly. I was glad that I never had to confront this issue with my own father!”
- “As my dad began having problems managing the finances, it was difficult to ease him away from the task so I could handle the accounts. Eventually, we worked it out so he would ‘check’ everything I did, which kept him in the loop, but gave me full responsibility for handling bills.”
In my own personal caregiving situation, my husband and I felt that living in the safety of our home would allow his mother to be more independent and active for a longer period of time. We felt that although the first two years of our caregiving arrangement were really quite good, there was always an undercurrent that somehow my mother-in-law perceived me (her primary caregiver) as a threat to her autonomy.
I tried very hard to respect her independence. I tried to empower her by presenting options and respecting her choices. But if she perceived me “directing” in any way she felt her independence was threatened and I sensed her resentment. Ultimately, I felt that most of the escalating friction could be attributed to my role as an in-law caregiver. Switching roles, or even the perception of switching roles, is indeed difficult.
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
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.