Caregiving: Facing the facts

Posted: September 28, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Emotional and Physical Challenges, Financial Considerations, Impact on Family Relationships | Tags: , , , , | Leave a comment

    

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. 
https://theconversationproject.org/

  • 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 Caregiving Continuum: from aging in place to nursing home placement

Posted: May 17, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities | Tags: , , , , , , , , , , , , , | Leave a comment

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. 

  1. 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.
  2. 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: 

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

Decisions, Decisions

Suffering in Silence

Posted: May 27, 2020 | Author: | Filed under: Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , , , | Leave a comment
Image result for suffering in silenc animated
Stuffing your feelings is dangerous

I an April 22, 2020 article from Caregiver Warrior website, “CAREGIVERS! STOP SUFFERING IN SILENCE. IT’S DANGEROUS!” Suzanne White states that it is an almost universal tendency of caregivers to suffer in silence, and because of this, it is not only dangerous to their well-being, but also to everyone else involved.  She goes on to say that when she reached out to talk about what she was feeling, her life changed instantly. 

http://www.feedspot.com/?dadi=1#feed/fof_fo_1345863__f_4798276/article/6062041292?dd=4311523058188102

It was during my adolescent and teenage years, that I suffered a time of “secret keeping”—which later, as a young adult, I recognized as detrimental to my emotional well-being. With a lot of personal introspection and practice, it was a pattern I changed. 

Fast forward forty years to the time when I was primary caregiver for my mother-in-law who moved into our home.  Everything went quite well for about two years.  But then her health began to decline rapidly, and my stress began to increase significantly. I joined a support group and it was great to be able to talk about the stresses of caregiving with people who just “get it.”  

Suzanne stated in the Caregiver Warrior article: “So silence be damned. Don’t be a victim or a martyr.” That was exactly how I felt—which I think stemmed from by my role as an IN-LAW caregiver. The support group leader suggested a family meeting to encourage more involvement from my husband’s siblings.   But I must report that even though strides were made, the once-good relationship we had with my husband’s family took a major hit. 

“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

To sum the experience up:  I agree that suffering in silence is dangerous and that growing resentment would have had a more destructive result. But sharing our feelings and frustrations  with “the others” did not result in an instant change for the better, and in fact, although we have been able to rebuild relationships with his sisters, my husband and his brother are still estranged.