Caregiving as a shared responsibility is a main theme of my book, What to Do about Mama? It is also the theme of Pamela Wilson’s Caring Generation November 24, 2021, podcast: Why Won’t My Family Help Me – The Caring Generation® by Pamela Wilson
As is my general pattern, I will share those features of my caregiving experience that relate to Pamela podcast by using excerpts from What to Do about Mama?
I met my husband in 1966 on our first day at college. The first thing I learned about him was that he came from a military family and that his dad, mom, brother, and two sisters were all still living in Germany.
I met David’s family the following summer when they returned to the States, and I was thrilled to be included in their family life. My own family had sort of disintegrated after my father passed away a few years earlier. I always felt cared for and included by David’s family, and that did not change after we married.What to Do about Mama? p. 7
From the beginning, I considered my husband’s family to be my family—like I was a daughter and a sister rather than a daughter-in-law or sister-in-law. I experienced the family’s “life events” from that perspective, too.
In 1994, my father-in-law passed away suddenly in his sleep one night. He died in a way that many of us would “like to go.” Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at eight o’clock in the morning, but she was shocked when she nudged him and he did not respond. This expression of emotion was more than she generally displayed. My in-laws lived in Florida, where they had moved in 1971. It was unusual for them to live in one place for so long, since Dad had been in the military for thirty years. Mom did not drive, and David and I extended an open invitation for her to live in our hometown.What to Do about Mama? p. 8
The time came when the family felt that Mom was no longer safe living alone in Florida, it was just a matter of course that she would live near us.
The general consensus was that if Mom would agree to the move, our hometown was probably the best choice because of the proximity of family members. In addition to David and me, our three grown children lived in the area, as well as one of Shelley’s sons. Shelley and Sandy each lived about two hours away, and it was expected that Scott could fly in easily. We anticipated that they would all make frequent visits.What to Do about Mama? p. 9
After a couple of years, my mother-in-law’s health began to decline significantly. At the time, I was working as an Assessor at the Area Agency on Aging. My job impacted my attitude about caregiving in a number of ways. First of all, I felt that my career experience had uniquely qualified me to be a caregiver. Secondly, I was influenced by many of the caregivers I had observed on my job.
*Families that had attached in-law quarters—close but separate—appeared to me to fare better. *Caregivers demonstrate love and appreciation through the sacrifices that they make. I was moved to tears by a gentleman who had “retired” early to care for his mother with advanced dementia. He told me, “Miss Barb, my mother does not know who I am. But at night, when we sit on the couch watching TV with my arm around her and her head on my shoulder, it is all worthwhile.”What to Do about Mama? p. 39
I was gratified to be able to “give back” to a family that had given so much to me.
I had the opportunity to demonstrate to my mother-inlaw and siblings-in-law my appreciation for being a part of their family since I was eighteen years old. I was also able to show thanks to my parents-in-law for providing support in our times of need. Most of all, I was able to show gratitude for their assistance and encouragement in helping to provide our children with their college educations. This was to be my gift to my all of my in-laws.What to Do about Mama? p. 35
So, my mother-in-law moved in with us and I quit my job to be her fulltime caregiver. The arrangement lasted for four years—the first two were good—the last two were not. It had been my expectation that my husband’s family would pull together like another family I had the pleasure of observing.
*I remember one snowy day driving down a gravel driveway to an old family homestead and being surprised that all five children took the time to come to the assessment for their mother to receive services.What to Do about Mama? p. 223
*One thing that becomes very clear from our reading of the caregiver responses and the stories in this book is that caregiving has a profound impact on family relationships. If your family unit has always been strong and you all pull together to meet this challenge, your relationship will probably grow even stronger from sharing responsibilities and supporting one another through the experience.
But ultimately, this was not the outcome of our caregiving arrangement.
Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.What to Do about Mama? p. 40
Click on the following link to listen to Pamela Wilson’s Podcast about the five reasons why families won’t help. Why Won’t My Family Help Me – The Caring Generation® (pameladwilson.com)
Five reasons why family won’t help:
- If your family members are not caregivers, they may not understand what you do all day.
Understanding the responsibilities of any job—caregiving included—requires an understanding of the job responsibilities. It involves experiences hands-on practical tasks under the type of emotional stress many caregivers experience. Everyone involved needs to learn that there is a big a difference between help that helps and help that creates more work for you. Oftentimes family members who are not caregivers stand on the sidelines giving advice or directing the caregiver what to do, which is generally not appreciated. Good caregiver communication is the key to overcoming these challenges, but there are no guarantees that all parties will be proficient at communicating.
- Dealing With Critical Family Members.
Family members can be judgmental and refuse to help when you don’t do things “their” way, which they consider to be the “right” way. They may then choose not to be involved. To cope with your critics, try not to take the criticism personally with the understanding that that there is usually a deeper reason for their response that has nothing to do with you. (For example, guilt at not stepping up like you.) Choose how you respond be aware that there is the potential for this negative event to be an unforeseen positive.
- Differing belief systems.
Changing beliefs is as difficult as changing habits. Some families believe that family takes care of family regardless of the situation, others do not. Even withing the same family, there are factors from childhood that have an impact you don’t know about. (Sibling rivalry is a good example that comes to mind.)
- Family interactions with caregiver.
What is your history? Have you let others down? Broken commitments? Been unreliable or untrustworthy? Hard feelings can be harbored for years. The intentions of caregiving siblings may be met with suspicion. Both past parent-child relationships and sibling relationships impact the type of care aging parents receive, and current belief systems have influence as well. Family beliefs can conflict with the family working as a team. It is most common that one caregiver bears most of the responsibility for an aging parent.
- Family May Not Help Due to Life Situations or Timing
Different siblings may be in different life stages. You may need to give the wake-up call you can no longer be the caregiver before other siblings to step up. Since you’ve been managing point your sibling may hesitate to upset the status quo. If that’s the case, it’s up to you not to let a lack of family support place your life on hold. (Be prepared for your relationship to be permanently changed.)
Caregivers—do you sometimes think horrible thoughts that you are uncomfortable sharing with others (except maybe with an online support group)? Or maybe you have simply blurted out something terribly inappropriate and then thought, “I can’t believe I said that!
Well, I have. (More on that in a minute.)
That is the topic of Pamela Wilson’s September 15, 2021, podcast “Wishing a Sick Parent Would Die
If you are not a caregiver you might be shocked if you were to hear a caregiver say they wish a parent would die. You might wonder how someone could possibly feel or think this way to the point that they could utter such words.
It’s easy to be judgmental, and challenging to be empathetic—especially when you don’t fully understand the daily life of caregivers. THE OTHERS–they just don’t get it. Because of what is called experience gap there is a lack personal insight when you are not experiencing caregiving on a full-time basis.
So, click on the link below to listen to the Caregiving Generation podcast. You will gain broader understanding and new perspectives whether you are a Caregiver or a family member who may not “get it” and are therefore, in need of education.
My less-than-stellar Caregiver Comment Confession:
“I have no desire to touch your mother in that way, and at times
I can hardly even stand to see, smell, or hear her around me.”
During the family meeting Sandy had said that seniors become more childlike, more egocentric. She expressed strongly that Mom would benefit from being touched. She expected hand-holding and hugging and suggested that I do that more. I could see that my very frank and harsh reply shocked her. “I have no desire to touch your mother in that way, and at times I can hardly even stand to see, smell, or hear her around me.” I couldn’t believe the sound of my own words, which were much worse than their actual meaning—that there was no getting away from Mom’s presence, even when she was visiting someone else. I think those words finally got through to Sandy—that the emotional turmoil we had been through the past year had reached the point that it was imperative to find a resolution to the growing problems. I moved on from being disappointed and angry; I was now distraught.What to Do about Mama? pp. 17-18
The July 14, 2021, The Caring Generation Podcast focuses on the parent-child relationship.
Resentment Towards Parents – The Caring Generation®
But in this post, I would like to focus on the topic of resentment from a broader perspective. As caregivers soon discover, caregiving is fraught with a wide variety of emotions. In my own situation as a daughter-in-law caregiver, resentment played a big part in the decisions I made in the last two years of our caregiving relationship. Resentment was an emotion I wanted to avoid.
These “non-natural-child” relationships can bring a whole new set of emotional conflicts, such as difficulty adjusting to unfamiliar roles or experiencing resentment for making sacrifices that the “children” are not willing to make.What to Do about Mama? p. 151
My husband has three siblings—one brother and two sisters. I’m not sure if each of their childhood positions in the family played a role in the caregiving dynamics, but interestingly, it was the “middle children” who were most concerned about their mother living alone in Florida. My husband, the oldest, and his “baby” sister were more inclined to accept their mother’s stated preference of continuing to live at a distance from her children.
There was a lot of discussion, including a family meeting, and it was decided that Mom would move North and live near us and several of her grandchildren who were also located in the area. Although my husband and I were her frontline caregivers, it was our expectation that his siblings, who were all able to travel to the area within a couple of hours, would visit frequently.
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?What to Do about Mama? p. 167
It was also our expectation that as caregiving needs accelerated, the children would all pitch in to share the responsibility. After two years, it became necessary for my mother-in-law to receive a greater level-of-care than she was receiving in her independent senior living community. She then moved into our home, and I became her fulltime caregiver. The arrangement worked well for another two years.
But eventually, Mom’s health conditions hit the “slippery slope”. When this occurred, and more involvement was not forthcoming, we had a choice to make. For me personally, the choice became to either “accept” the status quo and feel resentful, or to confront the situation and establish boundary lines. I chose the latter because I did not want to carry the burden of resentment.
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.What to Do about Mama? p. 256
We called another family meeting, and eventually, a family mediation, which improved our system of shared responsibility. However, in all honesty, it eventually resulted in my husband’s estrangement from his brother, and a much more tentative relationship with his sisters. For me, I am profoundly saddened by the loss of the once-close relationship I had with my husband’s family. I believe, however, that if I had allowed resentment to take hold, it would have been worse.
Now that our caregiving has ended, the relief is so palpable 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.What to Do about Mama? p. 194
Listen to the podcast to hear more about the following ideas:
- Resentment is caused by a lack of support and appreciation
- Differences in values can cause relationship challenges
- Personality differences impact resentment
- How to stop resentment
Most caregivers, I think, enter into caregiving with good intentions, but that is no guarantee that the endeavor will end well. Caregivers sometimes sacrifice their careers, income, marriages, friendships, and health. Oftentimes they find themselves stuck and thinking they have reached a point where they can no longer care for elderly parents.
In her July 7, 2021, podcast: When You Can No Longer Care for Elderly Parents-The Caring Generation®, Pamela Wilson discusses seven ways to disentangle yourself from caregiving.
But what really hooked me on the podcast was information shared by Pamela’s guest, Dr. Ingrid Bacon, a mental health therapist, researcher, and educator at Kingston and St. George’s University of London.
Now, I have given a lot of thought to my past caregiving experience. So much so that I wrote What to Do about Mama? which was, I think, a way of processing the ups and downs of that experience.
But when I listened to Dr. Bacon speak about the tendency for caregivers to excessively meet the needs of others—to the expense of their own needs—I found myself looking at my own experience from a new and different perspective.
Bacon noted that some family caregivers exhibit an injury pattern of extreme emotional, relational, and occupational imbalance—problems linked to their formative childhood experiences. The caregiver’s need for growth, self-development, validation, safety, or belonging, for example, can result in an over adaptation to the needs of others. Subsequently, these self-sacrificing behaviors lead to a suppression of their own needs and emotions, and a dynamic of interpersonal control. All combined, these factors create conflict that is detrimental to the whole caregiving process.
This process was complicated in my personal caregiving situation by the fact that I was not a daughter, but a daughter-in-law. I did not grow up in the same environment as had my husband and his siblings.
Circumstances of my childhood were such that my basic need for safety, stability, nurturing, and acceptance were not adequately met. Although I know that my involvement with my husband’s family from the age of 18 was largely based on my need to be a part of a (safe, stable, nurturing and accepting) family, I realize now that they probably did not know the extent to which they filled that need.
Because I wanted to express my “thanks” for being a part of this family for 40 years, I sacrificed a lot to care for my mother-in-law—with the expectation that my brother and sisters-in-law would be making like-sacrifices. Through over-adapting, I became almost imprisoned in the role; entangled in excessive doing and caring to the point of burnout.
The results were not pretty. During the last of 7 years of caregiving, I detached emotionally from my mother-in-law and my relationship with my siblings-in-law devolved from being historically good to one that is now nearly non-existent.
“Where do we go from here? Well, I really don’t know, but I do know it will depend on the kind of relationship my husband wants with his family, my gentle urging, and his siblings’ receptiveness and response. David has never been proactive in maintaining relationships. The frequent interaction we had with his family once his mother moved north all revolved around her. I don’t know if the current lack of interaction is a matter of returning to the old status quo or if it is about hurt. They have now “all moved on” in their best “we don’t talk about it” fashion. Time will tell if the moving on will include us, or not. This is not the way I would handle it, but really, this is not about me.”What to Do about Mama? p. 40
It has been ten years since my mother-in-law passed away. I cannot comment on the relationships my husband’s siblings have with each other, but as far as my husband and I are concerned, the process of their “moving on” makes me question if our once-warm bond was nothing more than a figment of my imagination.
Pamela Wilson’s Seven Steps to disentangle yourself from caregiving
- Decide and commit to changing the situation mentally—in your mind.
- Create a family care plan to present and discuss with your parents and the family.
- Be open to learning.
- Be honest and transparent.
- Hold a family meeting to announce your decision to decrease, modify, or end caregiving responsibilities.
- Support two-way conversations with siblings, parents, and others who want to discuss the plan.
- Commit to regaining your sense of self–to identify what you value and what you want and need from life.
Thoughts for consideration
Do not buy into faulty beliefs:
- Denial: Assuming that children will care for their parents or that parents will never get sick or need care.
- Avoidance: Not preparing ahead of time by initiating caregiving conversations before a “crisis situation” develops.
- Control: Taking over because you think it’s easier or faster to take charge.
To move forward when you realize you cannot live like this anymore:
- Prepare mentally.
- Research information.
- Contemplate your situation—think ahead.
- Commit to change.
- Offer options
- Be honest and transparent about escalating needs.
- Recognize that others may fear change, and therefore, resist.
- Ask siblings how they want to participate to implement needed changes.
- Set a realistic timeline, then move ahead.
- Be prepared for conflict. Guilty feelings foster defensiveness. Remain calm and listen without justifying your need to regain independence and tp live in peace.
- Solicit outside help to navigate family conflict.
- You are not a “quitter”. Do not fall back into a pattern of fear and self-doubt.
There is life after caregiving!
In regard to the June 2, 2021, Caring Generation Podcast—Taking Care of Family: Living for Someone Else—by Pamela Wilson–when I listened to this Podcast, I checked all of the following off as having had a significant impact in my own 24/7 caregiving experience. Supportive examples from What to do About Mama? are in blue.
What does 24/7 care mean?
- The individual in need of care may be at risk of injury or other safety concerns if left alone for any time during a 24-hour period.
- The term 24/7 care is often first heard after an elderly parent is either hospitalized, or in a nursing home for rehabilitation after a serious injury or health issue.
Mom nearly collapsed twice Monday night while I was helping her from the bathroom to the bedroom. I just could not physically handle her anymore. Normally I become highly focused when there is a problem to solve, but this time I felt at a loss about how to proceed. I called the doctor on his cell phone, and he instructed me to take her to the ER. He also said that my mother-in-law was probably moving beyond my ability to care for, and that we should consider placing her in a nursing home.An Unremarkable and Imperfect Grandma, (my memoir) p. 414
Goal upon release:
- If a parent has been living alone at home, the individual’s goal or the family’s wish is usually for a return to independent living.
When Mom was discharged, she returned to the retirement facility. The day after Thanksgiving she fell in her apartment, resulting in another trip to the emergency room. She had broken her pelvis again, this time in two places on the other side, which resulted in another hospital stay and another nursing home admission for rehab. Mom was discharged after two months and returned once again to her retirement home in early 2007. However, this time David and I informed Mom and his siblings that we were not going to repeat this process if she was injured and debilitated once more; something had to be done to put an end to this vicious cycle.What to Do about Mama? p. 11
- Parents often deny they need “help” because the term can have a negative connotation when viewed as meaning “incapable of self-care”.
- The ability to return to independence can be vague in terms of time and ability level.
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 appointmentsWhat to Do about Mama? p. 162
*Maintain hearing aids; help to put them in
*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–aids and hospice personnel
A serious talk is needed to determine:
- What level of independence necessary to return home?
- What efforts will need to be made?
- How much involvement and commitment will be required of caregivers?
- Will your parent commit to following doctor’s orders? Will he/she go above and beyond to establish habits that support better health and more physical activity?
We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving – which now included hands-on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the wheelchair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities – was just more than I could handle in my current physical condition.What to Do about Mama? p. 434
Options to be explored:
- Paid in-home caregivers
When the Aging care manager outlined the specifics of the waiver program’s “Services My Way” plan, I was floored. It provided more than I had dreamed in my wildest imagination: A 24/7 service provider; expensive equipment, such as an electric Hoyer lift, a customized wheelchair, and a combination shower wheelchair-commode; and environmental modifications, including ramps, laminate flooring, and a handicapped-accessible bathroom modification with a wheel-in shower chair.What to Do about Mama? p. 314
- Moving to a care community.
I accepted more responsibility as my parents’ conditions worsened. Eventually, my mom convinced my dad they should move to my city to end the last-minute emergency flights for me and allow me to keep closer tabs on their situation, including help arrangements. I chose a continuing care retirement community (CCRC) near my house, and it was the best decision for them and for me. My mother called the shots on the move, and of course, I agreed. Moving them to my hometown was the biggest change in my caregiving situation, and it certainly did ratchet up my involvement and time commitment.What to Do About Mama? From Marianne’s Story p. 98
- Relying on family caregiving
Boundaries to be set:
- As the caregiver, what level of time or money you can you commit?
Secondly, I was a caregiver for seven years. During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.What to Do about Mama? p. 2
If care becomes permanent, what will be the next steps taken to meet increasing needs?
Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? p. 252
A problem to avoid:
- Caregivers contributing to the situation by becoming indispensable. Be aware that each hospitalization or nursing home stay opens up another point for decision-making since escalating needs require new approaches.
She made comments such as, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.”
“I understand that you are that you are apprehensive of change and what it will be like for you living at Shelley’s. I say with confidence that Shelley is very capable and resourceful and will see that you are well-cared for. And after all, she is your daughter.”What to Do about Mama? pp, 32 & 35
A principal to follow:
- Establishing equal participation in care. This is essential so that that caregiver does not become responsible for taking on total responsibility for a 24/7 care situation.
Develop a “contract of expectations and commitments that everyone understands, agrees to, and signs off on.What to Do about Mama? p. 255
How many of you have been inundated with a show of hands?
Aging in Place or in a Care Facility
Once again, I am drawing upon information from The Caring Generation by Pamela Wilson. I follow this site for two reasons.
- First of all, I find that most of the information Pamela Wilson discusses is also addressed in my book, What to Do about Mama? The Expectations and Realities of Caregiving. The main difference is—what I have written is not culled from the experts, but from my own personal experiences and those of the other 3 dozen or so caregivers who shared their caregiving stories. Pamela also draws from personal experience, but she has elevated her knowledge and involvement to a professional level. So, in general, what she has to say validates, in my mind, the substance of my book.
- Secondly, Pamela Wilson encourages educating oneself about the many aspects of caregiving and the options available to managing the responsibility. She does not present anything as a quick fix or a way to make caregiving “easy”. I always appreciate that truth.
In this blog post, I will share experiences from my own caregiving story that appear in What to do About Mama? in response to the subject matter contained in the following podcasts by Pamela Wilson:
- Caregiver Decision Making: How to Take Care of Aging Parents–The Caring Generation by Pamela Wilson, May 2, 2021
Caregiver Decision Making: How to Take Care of Aging Parents (pameladwilson.com)
- Putting a Parent Into a Nursing Home – The Caring Generation® by Pamela Wilson May 12, 2021
Putting a Parent Into a Nursing Home – The Caring Generation® (pameladwilson.com)
As Pamela discusses, how to take care of aging parents requires a great deal of decision making not only by caregivers and their siblings, but by their adult parents, as well. As one choice leads to the next, mistakes can and do happen -especially when caregivers do not thoroughly understand the potential consequences of the decisions made. Relationships are challenged when conflicts between adult children and parents arise out of the differences in values, needs, and goals of care situations.
I agree with Pamela that caregiver decision making is best accomplished when adult parents and children have like goals, a positive relationship, and accurate information to make the best decisions. Keeping in mind that I was a daughter-in-law, when I entered my caregiving relationship, I thought all our boxes had been checked. I had good relationship with my husband’s family, and I was knowledgeable because I was an Assessor for our Area Agency on Aging. But I discovered that even for those who are well-informed about what to expect, “Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down.” (What to Do about Mama? p.189)
I thought we did a lot of things right:
• We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.
• We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.
• We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.
• We provided Mom with a multitude of opportunities to socialize with both family and friends
Still, we did a lot of things wrong:
• We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.
• We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?
• We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. 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.
• Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.What to Do about Mama? pp. 39-40
MAKING DECISIONS ABOUT CARE:
Home care, or aging in place, occurs when a senior lives at home or with children. It involves caregiver support with handling daily activities, maintaining a household, managing finances, and coordinating related support systems. Common complications involve mounting health concerns and related physical challenges, as well as potential memory loss—all of which amount to a tremendous investment of time.
Pamela Wilson identifies the top four elder care pressures of home care.
- Responding to Health Emergencies.
These are often crisis situations that require navigating the healthcare system under pressure. Keep in mind that patients are discharged sicker and quicker with the expectation that the family will provide the needed care.
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.What to Do about Mama? p. 21
- End of Life Care Decisions.
End-of-life care decisions can also arise quickly. They are particularly problematic when discussions have not occurred previously and therefore conflict can arise in the family.
- The Risky Side of Caregiver Decision Making Choices
Caregiver decision-making can take several paths. If a parent has advanced dementia, the adult child with a medical Power of Attorney (POA) has decision-making power. If there is less dementia, the caregiver has a duty to follow the direction of a parent.
If the caregiver with a POA follows an autocratic or directive decision-making process, he or she risks owning and being blamed for decisions that go wrong or risk permanently damaging relationships with aging parents. Too often, families have a wait-and-see attitude. This leads to decision making in a crisis situation, which limits options. Caregivers and aging parents often cannot agree—resulting in making decisions in worst-case scenarios
During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she were not cognitive, it would be obvious what step to take next (no treatment). He then continued by saying that since she was cognitively intact, decisions about treatment were completely up to her.”What to Do about Mama? p. 227
- The Burden of Caregiver Decision Making
Decision making becomes a problem for caregivers when, despite doing their best, they experience regret, doubts, and second thoughts, in addition to criticism from the other related players. For that reason, it is better to be informed by consulting elder care experts about caregiving decision making and care planning for aging parents.
Nursing home care is considered when more care is needed that a single caregiver can provide. The option of placing a loved one into a nursing home has gained attention and become more complicated due to the pandemic. In general, elderly living in nursing homes have more significant needs due to physical disabilities and health issues. Many have multiple health conditions that benefit from having access to medical care from a nurse or a doctor, including dementia, which creates the risk of wandering.
Pamela Wilson stresses the importance of communication in all caregiving situations. She warns that if you are committing to in-home care, be careful not to make promises you can’t keep about not putting a parent into a nursing home.
Remember, however, not to make unrealistic promises; you may need a way out of the commitment. Because BGM had quit her job, and her income was essential to meeting the mortgage, she and her husband became financially dependent on his mother. That left them little recourse when the burden became too much for BGM to physically handle.What to Do about Mama? pp. 251-252
She also stresses the importance of discussing the potential of putting a parent into a nursing home, early on—conversations about what happens when mom or dad need more care than the family can provide. Putting a parent into a nursing home has many factors that families don’t plan for and don’t expect, and often involve the “Big G”—or GUILT.
Once again, our conversation felt strained. I asked Sandy if she needed to clear the air about anything else. Big mistake! She told me that she felt putting Mom in the nursing home for a respite stay was selfish on my part.What to Do about Mama? p. 26
So, do your homework. Find out what a nursing home is like before you talk to your parent. See a room, visit the dining room, talk to the residents. Be prepared to talk about money. Creating a care plan for an aging parent, or a spouse is a critical component of avoiding unexpected and shocking surprises, whether caring for parents at home or putting them into a nursing home.
If you have taken the wait-and-see approach, and you are suffering repercussions—the time for discussion is now. Explain that caregivers become exhausted for many reasons. There are aspects of caring for a parent that take more and more time as an illness progresses. A caregiver who keeps going and going without realizing the toll that caregiving is taking poses a risk to an aging parent or a spouse. Caregivers become ill and incapacitated, which interferes with their ability to provide care. When the caregiver is worn out; this can impact the quality of care they provide.
I went to the appointment and made the decision to have bilateral knee replacements. That evening I started becoming very anxious. Was I making the right decision? We talked to Mom, and she seemed to understand that I could not continue to be her caregiver. The burden of caregiving (which now included hands on assistance with walking and transferring, maintaining the oxygen and carrying the bottles, pushing the transport chair and lifting it in and out of the car, cleaning up after episodes of incontinence, and, most significantly, wound care of her arms and lower extremities) was just more than I could handle in my current physical condition. David called Shelley and made plans for Mom to move the week before my surgery, which was scheduled for early April.What to Do about Mama? p. 33
If you can no longer be the caregiver, let the family know you are making alternative plans and now is the time for the “others” to step up and personally or financially to help if they disagree with nursing home placement.
At the end of March, my mother-in-law moved to her daughter’s home. . . As David’s family has always said when handing over responsibility from one family member to the next, the “passing of the feathers” had taken place. . . One month after moving in, Mom had an episode of some sort while in the shower. . . She passed away at 10:30 that [the next] morning.What to Do about Mama? p. 26
Note: These two podcasts are about in-home and nursing home care. Please keep in mind that these are two caregiving profiles on opposite ends of the caregiving continuum. There are a number of options in-between including in-home caregiving services, assisted living facilities, and continuing care retirement communities. All are viable options worthy of consideration for long-term and temporary care, all of which and are addressed in What to Do about Mama?
Pamela Wilson goes on to say: When elderly parents require 24-hour care seven days a week, if the family can afford to hire a caregiver to supplement family caregiver time, this represents a bridge that can delay putting a parent into a nursing home.
An affirmation from Pamela Wilson: No matter how the caregiving relationship ends it is important for caregivers to acknowledge all that they have done to help a parent, spouse, or other, remain independent and at home. You did and you are doing a good job. No one can take that from you. Be proud of your efforts and know that caregiving isn’t over after putting a parent into a nursing home. To make sure your parent receives good care you will still be involved. Last but not least, realize that you did not cause the illness or the declines that your parents are experiencing. Nor can you heal your parent or convince your parent to do things that they don’t want to do, those things that might help maintain or improve their health issues. We all have a choice and the free will to do what we want or what we think is best.
Pamela Wilson’s guest, Dr. Marissa Holst, Assistant Professor at the University of Minnesota Morris discusses cultural differences in families and how they affect caregiving relationships. Her remarks sum up what I believe was at the core of the disintegration of the caregiving relationship my husband and I had with his mother and his family.
Family background and culture impacts caregiving and family relationships. Culture is one factor that has a huge impact on how people think and behave. Individualistic cultures are those that stress the needs of the individual over the needs of the group as a whole. In this type of culture, people are seen as independent and autonomous. Social preferences tend to be dictated by the attitudes and preferences of individuals. Cultures in North America, Western Europe tend to be more individualistic. Collectivistic cultures express the importance of the group and social cooperation. When people in collectivistic cultures face hardship or difficulties, they tend to be more likely to turn to family and community for support. Collectivistic cultures can traditionally be found in places like Africa, Asia, South America.
Relationships change between adult children and their parents, and siblings, and there are a number of contributing factors: 1)Role reversals; 2) Family caregiving is reactive and not proactive—meaning that you don’t know what you’ll need until you’re right in the middle of it; 3) Even if you are a family with a plan, people and situations change and vary; 4) Change can and does cause conflict; and 5) Some families build closer relationships through caregiving activities—those with a history of high levels of closeness, low levels of conflict, and strong communication skills.
Our world has never seen so many older adults living at one time. Care trends in general in this country are flipping back to more home and palliative care methods. Our system just really needs to change on a large scale to meet the needs of our entire aging population.
It was the issue of family culture which I was least prepared for when I took on the role of primary caregiver for my mother-in-law. I never considered that we would not be available to my mother-in-law if and when there was a need. I saw caregiving as an opportunity to demonstrate my appreciation for being a part of their family since the age of 18. This was to be my gift to my all of my in-laws.
It was agreed upon during a family discussion that their mother’s care would be a shared responsibility, and that all of the siblings would be willing to make personal sacrifices to maintain her quality of living. It was my expectation that they would do this willingly and I never even doubted they would follow through with their verbal commitment.
I felt that most of the escalating friction of the past two years could be attributed to my role as an in-law caregiver. I found that I didn’t really understand how to navigate the family culture. It had just not been a problem before the relationship had become so complex.What to Do about Mama? p. 31
I always enjoy listening to Pamela Wilson’s Generation Podcast because of her no-quick-fix, no-nonsense, down-to-earth presentations. Today’s selection: “How to Have Patience With Elderly Parents” – The Caring Generation® Pamela Wilson | Mar 31, 2021 |
Click on the link below for the tips and insights that Pamela Wilson, a true caregiving expert, shares:
How to Have Patience With Elderly Parents – The Caring Generation® (pameladwilson.com)
When you write a book and it is published, the expectation is for you to sell yourself as an expert on the subject. But I am no expert on the subject of caregiving. This has been disclosed on the back cover of the book, What to Do about Mama? “It isn’t a book by ‘experts’, but by regular people in the trenches—people like you.”
Do I have Caregiving Experience? Yes.
- First of all, I was an Assessor at the Area Agency on Aging for over four years. It was my job to visit seniors in their homes in order to administer comprehensive assessments to determine their needs and eligibility for services. I saw firsthand the challenges for seniors and their caregivers, who were, in general, family caregivers.
- Secondly, I was a caregiver for my mother-in-law for seven years, four full-time when she moved into our home.
I have known a number of caregiving experts who, later in their careers, became family caregivers themselves. I think it’s safe to say that it was a common experience for these experts to be full of confidence at the onset and humbled as their caregiving role progressed.
Whenever I read a caregiving article or listen to a podcast such as this one, I think: “I have a relevant example of this in my book.” And then I am hopeful that other caregivers will find the book, read it, and be helped by all the good information shared by the three dozen or so caregiver contributors who imparted their real-life caregiving experiences.
I would like to point something out about the recommendations given by experts—those that have to do with establishing amicable interaction with “the others.” (This is a term I use for the players relevant to caregiving relationships.) No matter how well you apply the lessons learned about establishing priorities, employing problem-solving skills, setting boundaries, utilizing good communication skills, building healthy relationships, and practicing patience—you cannot control either the responses or the choices others make.
On the other hand, it taught me to take each day as it came and to deal with whatever that day brought. It taught me more about patience than anything else I have ever done.What to Do about Mama? p. 62
Since we have no crystal balls with which to view the future, it is really important to not rush into the decision to assume the role of caregiver without thoughtful consideration beforehand. On its face, becoming “The Caregiver” can seem like a quick fix—timesaving and convenient. But in the long term, you can count on the fact that your care receiver’s needs will increase, sometimes to your breaking point. Oftentimes the caregiving journey keeps on going and going—just like the Energizer Bunny—for 5-10-15-20-years or more.
I have learned a lot of patience and some compassion, but I would never have chosen this task if I had known what lay ahead.What to Do about Mama? p. 105
Caregivers are a busy and rushed group of people, often juggling work and caregiving responsibilities—trying to attend to the needs of parents, spouse, and children alike. It is common for a caregiver to feel overworked and underappreciated. As the care receiver heads down the slippery slope, more and more mitigation is required to meet increasing needs. It is important to keep communication open, to really understand how your relationship partner is feeling, and to talk to each other for accurate understanding.
A few weeks later I went to a caregiver’s workshop. The young woman sitting next to me turned to me and, with tears streaming down her face, told me the following story: My mother was taking care of my grandmother in my uncle’s home. When Grandma died, my uncle said my mom must move out. She came to live with me, and now she sits and does nothing. She has no interest in my five-year-old son. She feels it’s her turn to be cared for. So, I work full time, take care of my family, and now my mother too.What to Do about Mama? p. 1
Improving patience becomes a primary need, and the results of becoming more patient are beneficial to interactions with everyone. When criticism is thrown about, caregivers may feel demoralized
“Everything is for your convenience!”What to Do about Mama? p. 21
On the other hand, the more that the care recipient expresses kind expressions of happiness and lets the caregiver know that what they’re doing is actually making them feel better—that they really appreciate it—the more caregiver distress is diminished. Gratitude goes a long way.
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.”What to Do about Mama? pp. 19-20
Again–click on the link to listen to the Podcast:
How to Have Patience With Elderly Parents – The Caring Generation® (pameladwilson.com)
Pamela Wilson, The Caring Generation, recently discussed the topic of resentment as it applies to conflict that develops when a caregiver feels forced to choose between a spouse and caring for an elderly parent. Actually, Pamela has done a number of podcasts about how resentment is significant to a wide variety of caregiving scenarios and you can check these out here: You searched for resentment – Pamela D Wilson | The Caring Generation
But the story I want to share today is how resentment played out in my own caregiving experience. I am going to tell this story by sharing excerpts from my book, What to Do about Mama? by Barbara G. Matthews and Barbara Trainin Blank.
First of all, there was never any resentment between my spouse and me that involved the elderly parent for whom I cared. Why? Because the elderly parent was his. Yes, I was the caregiver for my mother-in-law.
I need to go way back in time to lay a foundation of the relationship I had with my husband’s family. It is very significant to the way I, as a daughter-in-law, ended up becoming the primary caregiver for my mother-in-law. In 1966, my first day at college, when all the freshmen were trolling about checking out members of the opposite sex; I met my future husband. I learned that David came from a military family and that his dad, mom, brother, and two sisters were all still living in Germany. I met David’s family the following summer when they returned to the States, and I was thrilled to be included in their family life. My own family had sort of disintegrated after my father passed away a few years earlier. I always felt cared for and included by David’s family, and that did not change after we married.What to Do about Mama? p.7
My father-in-law passed away, suddenly and unexpectedly, during in his sleep one night.
My in-laws lived in Florida, where they had moved in 1971. It was unusual for them to live in one place for so long, since Dad had been in the military for thirty years. Mom did not drive, and David and I extended an open invitation for her to live in our hometown. Mom wanted to stay in Florida and felt she was able to, despite not driving. She would come north three or four times a year and stay about a week with each one of her four children.What to Do about Mama? p.8
After my mother-in-law’s health began to decline, we began to look for various living options in our hometown, which we would show her when she came to visit. However, when she remained resolute about staying in Florida and we did not pressure her. But after a visit, my husband’s brother became alarmed about his mother’s safety. After returning home he recruited one of their sisters as an ally and the two of them began in earnest to enlist the family’s help to convince Mom to move north.
The general consensus was that if Mom would agree to the move, our hometown was probably the best choice because of the proximity of family members. In addition to David and me, our three grown children lived in the area, as well as one of Shelley’s sons. Shelley and Sandy each lived about two hours away, and it was expected that Scott could fly in easily. We anticipated that they would all make frequent visits.What to Do about Mama? p.9
Initially, my mother-in-law moved into an apartment in a supportive independent-living retirement community in our town. We had an expectation, based on prior discussions, that Mom’s move would afford his siblings the opportunity to spend more time with their mother. The sister who had advocated for her mother to move north visited monthly, but we were disappointed that the other two did not increase the frequency of their visits. Still, the arrangement worked quite well for two years, until the inevitable crisis moment occurred, permanently changing the direction of our lives—both ours and hers.
David’s and my decision to take Mom into our home was based on two main objectives: first of all, to end the cycle of injury, hospitalizations, and nursing home stays; and secondly, to help Mom meet her goal of seeing her last grandchild graduate from college. Additionally, since I worked at Aging, I had been living a life filled with old, sick people both on and off the job. In retrospect, I guess that didn’t change.What to Do about Mama? p.12
Adjustments were required, and adjustments were made, but altogether we had another good two years. But then, as is inevitable, my mother-in-law’s health began to disintegrate, taking family relationships right along for the long downward slide. Why? Because of resentment.
I began to harbor hard feelings toward my in-laws—because they were unwilling to make sacrifices anywhere near the level we were making. And of course, the resentment was not one-sided. We had a family meeting, but my husband’s siblings reacted defensively and angrily–their resentment probably stemming from guilty feelings.
Worst of all, when caregiving became increasingly more difficult, to the point of being unmanageable, it became requisite to mitigate new deficiencies on an almost daily basis. It was then that my mother-in-law expressed her resentment by saying, “Everything is for your convenience!” It was all downhill from there.
Going into the arrangement, I thought we did a lot of things right. But ultimately, we had made too many assumptions and had received too little commitment. Our expectations had been unrealistically high.
Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path. Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.What to Do about Mama? p.40
I cannot say this enough. No matter how much you think you are prepared, caregiving will throw you punches. A big part of your ability to handle the responsibility is having realistic expectations. I appreciate that Pamela Wilson, unlike many of those who write about caregiving, makes this perfectly clear in the January 20, 2021. Episode of The Caring Generation® “Being a Caregiver Is Not Easy”. Below is a synopsis of the podcast. Support examples from my caregiving book, What to Do about Mama? appear in red.
This episode is based on the following premises: Caregivers often describe caregiving by saying, “It’s more challenging than I ever imagined.” Being a caregiver is not easy, but neither is being the person who receives 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
Happy people possess qualities that help them remain positive and optimistic. Wilson highlights eight topics that delineate why caregiving is not easy and what positive people do:
The positive optimist recognizes that life consists of making hard choices. They view these problems or challenges as ways to promote growth of problem-solving skills. Caregiving entails hard choices to be made by everyone involved, including the caregiver, the person needing care, a spouse, and so on. Both caregivers and care receivers will be be making choices of varying degrees of difficulty that they would prefer not to make at all.
- Should I trade my time with friends this weekend or spend time at my parents in caregiving activities?
- Should I have my mom come and live with me of should she live in a care community?
- Should I choose chemotherapy and radiation for my cancer or opt for not receiving treatment and the alternative?
“The differences in the caregiving situations I observed were extreme, but from the best scenarios to the worst, caregiving was never easy.”What to Do about Mama? p. 155
Making difficult or hard choices becomes a way of life if you are a caregiver or an aging adult. When dealing with one problem after another, Wilson recommends preparing for “what-if” situations by creating multiple plans. Writing the problem(s) down can help with visualizing whether we are bothered by a problem or only a symptom, and whether or not the challenge even has any ideal solutions. She encourages participation in a support groups and says it is helpful to solicit opinions of how other people have handled similar situations.
“It’s helpful to hear the perspectives and suggestions of other caregivers and professional staff and to sometimes receive the ‘nudge’ needed to make difficult choices.”What to Do about Mama? p. 181
Aging in place or going to a care community is a good example of a difficult choice that entails having uncomfortable conversations about a number of multiple next-steps as potential solutions.
“People feel uncomfortable saying anything, so no one really expresses what they want or don’t want. Maybe they worry about hurting feelings; maybe it’s too emotionally painful to make difficult decisions. People think it won’t happen or want to pretend it won’t happen. They adopt the approach, “Since I don’t know what to say, I won’t say anything.”What to Do about Mama? p. 277
The second quality of a positive optimist involves interpersonal interactions and communication. How do you handle embarrassment, relating to doing something for the first time (such as assisting with toileting), and fear, relating to doing something in which you have no experience (such as wound care)? Both can be uncomfortable care situations. But these are problems that improve with “the doing”.
“Not only was it terribly disturbing to clean up (and embarrassing for her), but I was angry at another family member who just sat there and didn’t do anything— as if the problem would go away by itself.”What to Do about Mama? p. 321
“When the initial alarm sounds, caregivers are filled with worry— maybe even fear. They kick into action to find a solution that will make it “all better.” In the attempt to gain control of the situation they become the caregiver.”What to Do about Mama? p. 174
Another even trickier area of interpersonal interaction and communication comes with dealing with other family members. As a burned-out caregiver, you may feel that you can’t continue at either the current level of help that you are giving, or the amount of help that you are receiving. You need to have a family talk. Good communication skills are essential, and you can learn how to have these conversations. But does that ensure that the family members you want to talk to will have good communication skills, too?
“We made too many assumptions, and with our differing styles of communication, too many hard feelings developed at the time of our greatest need—the last two years of caregiving, when my mother-in-law’s health went into serious and rapid decline.”What to Do about Mama? p. 244
The third quality of a positive optimist is having a growth mindset. I call this a “Can Do Attitude.” This means that you believe you can succeed with time, effort, and learning. You look at challenges as opportunities. In other words, you’re persistent and don’t give up; you’re likely to listen to the suggestions of other people and say, “Yes, that might work,” as opposed to “That won’t work.” These are the folks that set goals and take action, as well as educate themselves rather than looking back, and saying, “Oh, I wish I knew then.”
“Sometimes caregivers express the feeling that they had expected caregiving to be “easy,” but they found out through the actual experience that it was truly very difficult. Through the process of “rising to the occasion,” they discovered newfound capabilities and personal growth.”What to Do about Mama? p. 242
“Problem-solving: It’s important to know how to identify a problem, consider solutions, develop a plan of action, and put that plan into practice with determination and a “can-do” attitude. If they don’t have the knowledge needed, caregivers do not hesitate to research and discover how to solve problems.”What to Do about Mama? p. 264
The fourth quality of a positive optimist is the ability of the individual to recognize the importance of making time to care for themselves physically and mentally. Too often caregivers feel that they have put their life on hold to care for their aging parents. And the fact is, they probably are, so the best that can be done is to recognize that you cannot care effectively for others if you do not care for yourself.
“Accept offers of help so that you can regularly schedule time to take care of yourself. Eat right, get rest, exercise, and see the doctor when you need to. Schedule time to nurture and recharge yourself. Enhance your inner peace through your choice of relaxing activity: read, journal, meditate, pray, listen to music, find a retreat (even if it’s just soaking in the tub). Schedule others to provide services: minimize your chores by hiring a cleaning lady; get time away by hiring a senior sitter.”What to Do about Mama? p. 180
The fifth quality of a positive optimist is the ability forgive and to move past hurt feelings—not holding grudges—leaving anger, disappointment, resentment, and thoughts of revenge behind. It’s taking responsibility for making a plan to forgive and to move beyond the sibling rivalries of childhood.
“In the real world, when there’s a pressing need to collaborate and make important decisions (especially with a resistant parent), you may not all be in top form, but, rather, anxious and overwhelmed. Your relationships may be knocked off balance by the magnitude of caring for aging or failing parents. Feelings for each other shift, sometimes weakening the ties and intensifying sibling rivalries of the past. There may be jealousies related to perceived “favored children” or worries about issues of inheritance. A frequently reported caregiver frustration is the lack of consistent help from other family members; a large portion of sibling caregivers (40 percent) end up having serious conflicts with each other. Most of us do not even see that we are about to become mired in the quicksand until we step in it and it begins to suck us down.”What to Do about Mama? pp. 188-189
The sixth quality of a positive optimist is making the effort to get sufficient sleep, the lack of which stresses your immune system, causes illness, and diminishes your mental abilities.
“Make sure that you as the caregiver get enough rest and sleep. What happens to your loved one if you also become ill? If you are having trouble getting enough rest, ask your doctor for medications that will relieve your stress or sleeping problems. I never thought I would ask for help, but this is how I made it through the rough times.”What to Do about Mama? p. 140
The seventh quality of a positive optimist is to be proactive in maintaining relationships with family and friends in order to reduce social isolation and loneliness.
“Jillian (p. 80) agrees, urging caregivers to have something fun to look forward to in their schedule—to make time for activities other than caregiving responsibilities. “Make time for yourself and do it! Maintain friendships, have someone you can talk to and share your feelings with. Laugh as often as possible.”What to Do about Mama? p. 153
The eighth quality of a positive optimist is making it a deliberate practice to create a regular routine—especially to put in practice the previous seven topics on the list
“Mom was now on oxygen full time. We started the New Year with her being homebound for six weeks due to receiving in-home services—visiting nurses and physical therapists—followed by another few weeks of waiting for the winter weather to break. New routines with oxygen and dressing assistance added up to a lot more time with hands-on caregiving.”What to Do about Mama? p. 14
Are you feeling that caregiving is ruining your life? Listen to the podcast: Caregiving Ruined My Life – The Caring Generation®
by Pamela Wilson | Sep 15, 2020 |
In this podcast Pamela Wilson speaks to an unspoken belief of many caregivers: “Caregiving Ruined my Life.”
Although I never thought or felt about caregiving exactly in these terms, I guess you can say I came close. Because caregiving had drained me, both physically and emotionally, my thoughts ran more along the lines of: “I squandered the last best years of my life.”
As part of the process of regrouping after caregiving, I wrote What to Do about Mama? I wanted to share insights about what I learned. I wanted pre-caregivers to know beforehand what they were getting into. I wanted current caregivers to have more tools to work through the inevitable hurdles. I wanted to give post-caregivers encouragement that there is life after caregiving, and more importantly, how to avoid burdening their own children with the same degree of responsibility.
Wilson states that many caregivers even feel that caregiving almost killed them, and I can personally attest to the truth in that statement as reported by those caregivers who submitted their stories for inclusion in What to Do about Mama?
“My overall caregiving experience has nearly killed me.” (Katrina’s Story)What to Do about Mama? p. 105
“At times, I have felt her suck the life right out of me.” (June’s Story)What to Do about Mama? p. 144
Wilson affirms that caregiving can be rewarding, meaningful, and joyous, but goes on to say: “Let’s be realistic.” Caregiving might be the most difficult responsibility you will ever accept. Few family members report raising their hands to volunteer for the job. Many caregivers feel they had no other choice, because nobody else stepped up to offer help.
Following are ten ways caregivers can take back their lives, according to Pamela Wilson. I have listed them along with my affirmations and rebuttals, noted in red.
- Tip #1: When elderly parents are adamant about refusing help, stop pushing. Set boundary lines. Learn how to take back your life one step at a time. You’re not going to abandon your parents, but you may also not be that caregiver who loses your life when your parents’ lives fall apart. In the beginning, we felt guilty that my mother-in-law had been pushed into moving closer to family. As front-line caregivers, we accommodated her every need. Later, when her needs increased, she moved into our home. Eventually I began to set boundary lines which were not well-received. I was told everything was done for my convenience and that I was selfish. Boundaries are of critical importance. They are not a magical solution.
- Tip #2: Manage your work-life balance while honoring your sense of duty. Hire in-home caregiving aides, consider other supportive living arrangements such as assisted living facilities, avail yourself of available community resources. We did not hesitate to enlist Hospice services. They helped my mother-in-law live life to the fullest, even traveling by plane to a granddaughter’s college graduation. She was on Hospice for two years. It’s a fallacy that the patient must be on his or her deathbed before receiving Hospice services.
- Tip #3: Not all families get along. The longer you continue being “the caregiver”, the longer the problem will persist. Develop a plan to take back your life–and follow through. Your relationship may suffer, but if you become emotionally and physically drained, your resentment will grow, and family relationships will suffer anyway. Don’t allow this burden to become solely your problem. We had a family meeting and thought we had an established plan. Near the end, it took a family mediation before expectations were met. Don’t undertake a commitment based on assumptions. Draw up a concrete and specific plan of how everyone can and will contribute. Sign, date, and revisit the plan often so that it will continue to meet growing needs. Again, your relationships may suffer, but is better than the following.
- Tip #4: “Caring for my elderly mother is killing me.” Acknowledge it and then take your life back. There is life after caregiving. (But that doesn’t necessarily mean you can turn back time.)
- Tip #5: If something is making you sick, acknowledge the impact of caregiving stress and having to shoulder the brunt of the burden. While caregiving, I contracted the shingles. Fortunately, they weren’t too bad. Stress related? I believe so. I also damaged my knee while squatting down to tend my mother-in-law’s skin tears. The knee(s) deteriorated to that point of needing replacements and ended my caregiving responsibility. My mother-in-law moved from our home to her daughter’s and lived one more month.
- Tip #6: It’s frustrating when people say, “Call me if you need help” and are then not there for you when you need them. Well, sure. But sometimes the caregiver needs to follow through with asking and to be specific in their needs. And sometimes, the parent is resistant. My husband and I used the services of a Friendly Visitor from Hospice so that we could have a “date night.” I would have dinner prepared so that my mother-in-law could feel that she was entertaining a “guest” rather that feeling like she required a babysitter.
- Tip #7: Caregivers who stop working to be full-time caregivers, don’t foresee that caregiving work will become all-consuming, isolating, and depressing—often their only outside social and mental activity. It can impact you financially, mentally, and physically. Anticipated months can turn into years. Consider the potential impact ahead of time. When my mother-in-law moved in, I emphasized that I wanted to maintain time for my daily walk. Because we all valued her ability to have social contact, I would take my mother-in-law to the senior center twice a week to play bridge. After she was settled there, I would hightail it over to Curves for a workout and would then proceed to one of my daughters’ homes for a visit with grandchildren. Fortunately, everything was in a fifteen-minute radius of here and there. This became my primary survival technique—a real win-win situation.
- Tip # 8 Most families don’t give enough prior consideration to the challenges of living with elderly parents. Parents and children have different lifestyles, and this decision changes lives forever. It’s not easily reversible. Separating is like getting a divorce. Feelings are hurt when a caregiver says, “I can’t do this anymore.” I worked at the Area Agency on Aging and had a lot of experience visiting families and observing various caregiving models, and we definitely gave this a lot of thought. But even after knowing someone for 40+ years, there are still surprises. As an in-law, I found out more about my mother-in-law that I ever wanted to know, and I’m sure she felt the same. When it came to the point that she had to move out of our home she said, “You’re evicting an eighty-nine-year-old woman!” and “I feel protected here.” (What to Do about Mama? p. 32.) Talk about guilt!
- Tip #9 If you made the decision to give up a full-time job and live with elderly parents, you may have a great deal of apprehension and fear about getting back out there. I did give up a full-time job, but since I was able to retire, this was not a big problem for me. It is common for caregivers to feel, “What now?” when caregiving ends. I bypass that one, too, probably due to my status as a daughter-in-law, and also because I was focused on having bilateral knee replacements and going through rehabilitation.
- Tip #10: Caregiving is a marathon—not a sprint. It doesn’t end quickly. Every choice that you make might be questioned by your family members. You will be judged for helping too much, not helping enough, for being selfish, for expressing your feelings. Whatever happened to the idea of enjoying life while you’re young? This was our experience exactly. Caregiving needs can develop suddenly. When “the crisis moment” occurs you often find yourself woefully unprepared. Bottom line for the siblings is: “If they want to weigh in on what the solution should be, they have to participate in the process that leads up to that.”
See Chapter One in What to Do about Mama? Expectations and Realities of Caregiving for my complete caregiving story. The following excerpt is a summary of the experience.
I thought we did a lot of things right:What to Do about Mama? p. 39
*We had a full family discussion among the siblings when developing the caregiving plan, both when Mom moved north and later when she moved into our home.
*We communicated frequently and openly, both verbally and in writing. Although e-mailing has its drawbacks, it was efficient.
*We did our best to respect Mom’s independence. Initially, she lived in an independent retirement home. When she moved in with us, she had her own space with her own furniture and belongings.
*We provided Mom with a multitude of opportunities to socialize with both family and friends.
Still, we did a lot of things wrong:
*We did not include Mom in our initial discussions. Ultimately, the decision was hers, but she was strongly pressured.
*We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety?
*We made too many assumptions and had too little commitment. Our expectations were too high. Caregivers are giving people who often try to maintain a sense of control. 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.
*Despite a good multi-decade relationship, the difference in our family cultures and its impact on who we were as people was just too vast. Once the trouble began, interaction among all parties became increasingly difficult, and then impossible. That was the quicksand I never saw in my path.
Ultimately, my husband and I have come to believe that it takes a caregiver to understand a caregiver. They did not understand.What to Do about Mama? pp. 39-40