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.)
Have you ever sat in a coffee shop and “overheard” a neighboring conversation? If that is something you like to do, but feel guilty about eavesdropping, tune into the Jen and Joji Podcast.
Jenn and Joji Podcast
Here you will hear the chitchat of two (Millenial?) friends as they share their thoughts about a wide variety of topics, such as perfectionism and sobriety. The podcast I chose was BURNOUT, and although they largely spoke in general life terms, the conversation touched on and applied to the specific topic of CAREGIVING.
Jenn is an elementary school teacher whose entire nuclear family–both the spouses and their two young children–are overcoming a bout with coronavirus. Jenn noted that they now have SUPER ANTIBODIES. Jenn expressed that their COVID experience was like a “mini 2020” because of their return to quarantine status.
Joji is a nurse who had just experienced an overwhelming week, which consisted of work (an unusual 5-day shift) in conjunction with a week of caregiving (a responsibility she and her siblings share on a rotating basis). By Friday she felt like she was hitting a wall, noting that it felt like a train was barreling down on her that could not be stopped.
Respite care helps caregivers avoid burnout by taking time away from the senior-care environment. It helps prevent the depression that develops when caregivers do not make time for a well-rounded personal life. Again, respite care falls within the realm of family responsibilities and provides another good opportunity for friends or volunteers to help. But if these resources are not available to you, paid services are accessible in-home through independent caregivers and home-health agencies, or out-of-home at assisted-living or nursing-home facilities, adult day centers, and family respite-care homes.What to Do about Mama? p. 184
These experiences led Jenn and Joji to talk about burnout and how to cope. They touched upon the following:
Signals of burnout:
- Losing patience and being bothered by the “little things”.
- Turning to alcohol, rationalizing that you “deserve” it, then feeling worse afterwards.
Self care as a ways to deal with burnout:
- Use positive self-talk that does not assign an emotion to your feelings.
- Acknowledging that you are burned out and taking time to “pause”
- Learning to let go and not expecting yourself to be “perfect”
- Establishing basic healthy habits (such as eating right, exercising and getting enough sleep)
Relationships and asking for help:
- AT HOME
From your spouse and children (it’s a good way for them to learn independence)
From your siblings (as in sharing the responsibilities of caregiving)
- AT WORK
From your Boss and Co-workers.
Remember you are a TEAM
“I learned how to say, ‘NO,’ in addition to knowing when to say, ‘Yes.’”
What to Do about Mama? p. 267
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
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.
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?
I was finally able to visit my brother and sister-in-law after COVID thwarted my best-laid plans for frequent visits. Since a diagnosis of Lewy Body Dementia, their lives have changed about as dramatically as one can imagine, but they are both working hard to get through this together day-by-day-by-day.
I was a caregiver for my mother-in-law for seven years, four of them fulltime in our home. I often refer to that experience when discussing caregiving. After one such comment, my sister-in-law said, “Caregiving for a spouse is different.” I know that this to be true. (I also know there are similarities and differences in all caregiving situations.)
Lewy Body impacts both the body and the mind. It, along with a whole host of other infirmities, can and does redefine a relationship. And especially with dementia there’s an ultimate sense of having lost your loved one twice.
The March 2021 Guideposts article “Spousal Caregiving: 5 Ways to Keep Your Marriage Strong offers good advice—albeit it may take some creative thinking to apply the suggestions to your particular situation. The overall message is to make time to enjoy each other in ways that go beyond caregiving needs.
- Redefine marital intimacy.
Savor physical touch in many forms that demonstrate caring and make each other feel good. I used to give my little one “lotion parties” after their baths. Try it with your spouse – you might like it! (And don’t forget those feet!)
- Fall in love with different personality traits.
I noticed how aware and concerned my brother is that his wife takes time for herself.
Don’t forget to appreciate your caregiver!
- Find new things to bond over.
Go through those boxes of pictures and pick out the best photos to relive and document your travels.
- Renegotiate your roles.
Identify those tasks you have to do. For example—you must eat. Daily routines can be a chore. Care Receiver—can you make up a menu for one breakfast, one lunch, and one dinner for the week? Choose some simple new recipes to make and help as you are able—even if that means just reading the recipe to the cook, one step at a time.
- Celebrate your anniversary. Enlist your family to help out—I’m picturing a special meal ala JH, MH as hostess, AH as garcon, and EH as entertainment!