Caring for your spouse

Posted: June 4, 2021 | Author: | Filed under: Emotional and Physical Challenges, Impact on Family Relationships | Tags: , | Leave a comment

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.   

Spousal Caregiving: 5 Ways to Keep Your Marriage Strong | Guideposts

  1. 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!)
  2. 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!   
  3. Find new things to bond over.
    Go through those boxes of pictures and pick out the best photos to relive and document your travels.
  4. 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. 
  5. 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! 

Lickity Splickity or Little by Little?

Posted: April 21, 2021 | Author: | Filed under: Aftermath of Caregiving, Emotional and Physical Challenges | Tags: , , , , , , | 1 Comment

Did you ever listen to a speaker or read an article and think: “I never thought about it like that before”?

Well, that’s what happened when I read the Barbara Karnes article about cleaning out the belongings of a deceased family member. 

BK Books | Something to Think About
Cleaning Out Their Belongings After Death

Why?  Because her advice is the anthesis of what I would do—and actually have done.  It’s against my nature.  I’m a minimalist—the kind of person who is always paring down, cleaning out, and organizing. 

I used to teach in a prison and there was a video I would show to my class with the coolest down-to earth counselor who had a way of explaining things in a way that just “hit it on the head”.  The video featured this little girl who was like a “little mother”—always cleaning up.  The counselor explained the child’s behavior by pointing out this was her way of trying to exert some control in her life.  It was a coping mechanism to counter the uncontrollable situations in her environment.   

For me, this counselor’s explanation was an “AHA” moment. It brought some light to my own behaviors. 

Barbara Karnes received a letter asking for “guidance to family members who have lost a loved one regarding how to manage the process of cleaning out the residence of the person who passed away.” 

The approach I have personally taken—one which I have often recommended—is to do it ahead of time.  I have addressed this issue in my book, What to Do about Mama? by saying “I will not leave my children the burden of my messes.” (p. 332).

As my mother-in-law would say: “There’s always mañana.” She left the daunting task of downsizing and distributing her belongings to her children—a process that happened several times as her circumstances changed.” 

As with everything, I suppose, there are different ways to look at the chore of having to allocate and dispose of your parents’ belongings. Depending on how they confronted that task, you will most likely have to deal with it, at least to some degree. That process can be formidable to be sure, but it can also be meaningful and healing from a nostalgic point of view.
In light of my own caregiving experience, I am determined not to leave my children the remnants of my life in a state of disarray. I have always appreciated that my mother did not do that to my brother and me, and I was never happy about the fact that my mother-in-law did exactly that.
So, downsizing became the first project on the top of my list. David and I went through all our storage areas and closets, paring our belongings down to whatever we truly needed or wanted.
Next, I made a detailed inventory of our belongings. An appraiser came over one evening and gave us a verbal appraisal of many items on the list. Then, I distributed the inventory to our children so they could express what they were interested in having someday. It was like pulling teeth to get them to do it. I found it impossible to make hard-and-fast decisions but did manage to come up with a system that I think will make it easier for our children to distribute, donate, and dispose of our belongings. “

What to Do about Mama? pp. 221, 303-304

 I have also blogged about the topic, previously: 

Downsizing

Belongings

Processing the Pictures

Barbara Karnes recommendations, are quite different:

  1. First, if you don’t have to clean out belongings, don’t for awhile, wait even months if necessary. There can be great comfort seeing and holding something they treasured or used.  In the early days of grief, their belongings can bring comfort and will help you.
  2. Second, don’t make any major life decisions, like selling the house, moving in with family, spending large sums of money, or investments for at least a year. That year will give you time to think with your mind not your emotions.
  3. Now, some people can’t wait months, even weeks, let alone a year. Decisions have to be made right away. If that is the case think of what you can keep, even if the material items aren’t needed but have sentimental memories—-keep them for awhile, you will know when you can let go of them. Err on the side of keeping.
  4. Adult children often rush in and organize us elderly, thinking they know best. This is a reminder to you adult children to be gentle, try to put yourself in your loved one’s situation and ask how you would feel and what would you want if it was you living this life challenge of releasing a lifetime of memories and often independence.
  5. There are companies you can hire that will help you downsize, relocate, organize the “house item releasing.” These people are sensitive to the emotional needs and experience of having to part with possessions accumulated over a lifetime–or not. 
  6. When moving in the time of grief, letting go of material items is like letting go of the memories those items hold. It is an added burden to an already emotional assault on our idea of living.

I live in a condominium community which—though not specifically a 55+ community—is largely a 55+ community.  In the year of the pandemic, our neighborhood has found itself in a state of transition, with some of the residents leaving to progress up the ladder of senior living options, and others passing away.  One gentleman sold his home, downsized, and moved to a nearby assisted living facility—a difficult relocation during the coronavirus.  Though admittedly of advanced age, I was still surprised when I saw his obituary in the paper only a few weeks later. 
Now I wonder: 

What treasures were left? 

Cleaning Out Their Belongings After Death – BK Books

Patience with Parents: When the Shoe is on the Other Foot.

Posted: April 13, 2021 | Author: | Filed under: Emotional and Physical Challenges | Tags: , , , | Leave a comment

 

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)

My response:

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. 

  1. 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. 
  2. 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)

Caregiving and Resentment

Posted: February 20, 2021 | Author: | Filed under: Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , | Leave a comment

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

 

CAREGIVING: It’s Never Easy

Posted: February 11, 2021 | Author: | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , , , , | Leave a comment

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.

Being a Caregiver Is Not Easy – The Caring Generation® (pameladwilson.com)

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:

Number One:
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

Number Two:
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

Number Three:
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

Number Four:
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

Number Five:
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

Number Six:
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

Number Seven:
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

Number Eight:
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

It’s COMPLICATED–Attitudes about Dying

Posted: January 23, 2021 | Author: | Filed under: Emotional and Physical Challenges, Topics of Current Interest | Tags: , , , , , , , | Leave a comment

I will admit to the fact that I have pretty strong feelings about life and death issues.

  • I hold to the belief that quality of life supersedes quantity of life. 
  • Although I understand the practical reasons that nursing home residents and older people in general are the top priority for COVID vaccinations, I struggle with the concept that young people—with most of their life ahead of them—must wait for someone like me—with most of my life behind me—to get vaccinated.    
  • When the hospice spiritual advisor asked my mother-in-law if she had ever considered stopping treatment, she said no, that her goal was to live to one hundred and that she didn’t want to miss anything.  To be honest, the thought that ran through my mind was, “Is there no end in sight?”
  • I thought my daughter-in-law’s mother exhibited profound courage and strength when she decided not to treat her stage four cancer after an unexpected diagnosis.
  • I support the perspective expressed by Ezekiel Emanuel in his article “Why I Hope to Die ant 75,” which appeared in the September 2009 edition of The Atlantic. (Emanuel was recently named to President Biden’s COVID-19 Advisory Board.)

    http://www.theatlantic.com/features/archive/2014/09/why-i-hope-to-die-at-75/379329/

“It is Emanuel’s contention that―whereas death may deprive us of experiences and milestones; of time spent with our spouse, children, and grandchildren; indeed, of all the things we value—living too long is also a loss. It renders us disabled, or at least faltering and declining. It robs us of our creativity and ability to contribute to society and the world.

Even if we manage not to become burdens to our children, our shadowing them until their old age is also a shortfall. It transforms how people experience us, relate to us, and remember us—no longer as vibrant and engaged—but feeble, ineffectual, and pitiable. It is indeed such memories that are the ultimate tragedy.

Americans might live longer than their parents, but they are likely to be more incapacitated, both physically and mentally. Although we are growing older, our older years are not of high quality. Health care has not slowed the aging process so much as it has slowed the dying process.

So, yes, I am in agreement with Emanuel. I want to die with respect and without aggressive care—no ventilators, feeding tubes, dialysis, surgery, antibiotics, or any other medication—other than palliative care; in other words: no life-sustaining interventions. A do-not-resuscitate order and a complete advance directive have been written and recorded (even if I am conscious but not mentally competent). I do not want my “consumption” to outweigh my ‘contribution.’”

What to Do about Mama? pp. 300-301

I also admit, ITS’ COMPLICATED.

Hidden Brain

This becomes abundantly clear in The Caregiver Space article, “The Ventilator:  Life, Death and the Choices We Make at the End”,  November 19, 2020, and its accompanying Hidden Brain Podcast.

The Ventilator: Life, Death And The Choices We Make At The End | The Caregiver Space

In the Podcast John Rinka tells his wife’s story. Stephanie was a nurse with a strong opinion about quality and quantity of life (much like mine).  Together they had ongoing conversations about end-of-life issues, and Stephanie was always unequivocal—she wouldn’t want to be kept alive if her quality of life was gone. But then Stephania became a victim of ALS and the Rinka family discovered that choices prefered when we’re healthy may no longer make sense to us when confronting death.

 As John Rinka shares:

  • Seemly rational choices you make when you are happy can change when you are facing death.
  • “I can’t live that way” becomes “I want to see tomorrow.”
  • When there is no more hope, every day just gets worse. 
  • She could have lived peacefully with dignity but brought misery upon herself and her family.
  • We were overwhelmed with daily challenges and the progressive decline.
  • The feeding tube was a big decision but when Stephanie chose the ventilator I was floored; this was not the way she ever wanted to live.

Their son Jason shares with us as well:

  • It was like having two moms.  One, the rational mom and experienced nurse; the other, the mom who wanted to live until tomorrow.
  • The mistake is in thinking you know the choices you would make in the moment.
  • She wasn’t thinking rationally–but only, “I’ll have tomorrow.”
  • I don’t want to go through that—I don’t want to be a burden to my family. But the reality becomes: “Are you ready to leave this?”

Most poignantly, John sums is up by saying: “I would relive any of those days before the ventilator, but there’s not one day you could pay me enough money to relive after the ventilator. 

We all have more than one version of ourselves, each with different desires. 
Fear, confusion, and love make easy decisions difficult. 

Another interesting perspective is expressed in the January 21, 2021, Barbara Karnes article:  The Scar In Your Heart: Grief In End of Life Care

The Scar In Your Heart: Grief In End of Life Care – BK Books

Karnes received a comment from a hospice nurse who said:  “The JOY of hospice was mine for years.  I could easily see the beauty in almost any end-of-life situation. Then, my dad died on our service in 2015. I continued to work for hospice for the next three years but after my dad died I couldn’t see ANY beauty in end of life. I completely walked away in 2018. I don’t know how to “get it back.”

Barbara Karnes responded that when someone in a professional role is facing a loved one’s end of life, they are confronted with entirely different perspective. The dying is personal and therefore has a different impact. Entering a patient’s home after the death of a loved one touches and rubs the professional’s grief wound. 

Caring for people at end of life has its own unique challenges.  Hospice, Palliative Care and Home Health agencies need to deeply support their staff or they will suffer from compassion fatigue.

Gratitude by Caregivers and for Caregivers

Posted: October 30, 2020 | Author: | Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , | Leave a comment

HOW THE POSITIVE EFFECTS OF GRATITUDE REDUCE CAREGIVER STRESS DailyCaring, October 2020

https://dailycaring.com/how-gratitude-helps-you-reduce-caregiver-stress/

This DailyCaring article discusses how gratitude is proven to reduce stress—from the point of view of CAREGIVERS having gratitude saying: 

  • Practicing gratitude can make you happier, lower stress, protect you from depression, help you sleep better, boost your immune system, and improve your relationships.
  • Practicing gratitude doesn’t mean ignoring negative feelings or bad things in general, but recognizing the positive in your life, which is not terrible 100% of the time. 

The article points out the benefits of recognizing the positive effects of gratitude:

  • It helps you become more optimistic and improves your overall attitude,
  • It helps you to respond in an optimistic attitude more naturally. 
  •  It helps you focus on what you do have rather to avoid getting sucked into negativity. 

The suggested method of practice gratitude is to keep a journal. 

This is all well and good.  But I must also suggest that care receivers and the other family members remember to show gratitude to the caregiver.  Nobody is perfect in caregiving situations.  Everyone gets cranky or critical and makes mistakes.  But acknowledging the caregiver for their efforts goes a long way. 

My husband and I were frontline caregivers for his mother for seven years.  After she began to suffer recurrent falls, hospitalizations, and rehabilitations, she moved into our home.  I quit my job and became her fulltime caregiver.  This arrangement went well for the first two years, but then the inevitable decline began again, and the caregiving arrangement became increasingly difficult.  My attempts to mitigate increasing needs were not well-received. 

“Everything is for your convenience!” David and I tried to talk to her about her feelings, but I ended up leaving the room. I was really angry about her remark. I was sinking under the weight of caregiving, trying to find solutions to problems, and was accused of doing things for my own convenience!

What to Do about Mama? pp. 21-22

For me, the greatest difficulty was the language used by my mother-in-law and Sandy, describing me as “selfish.” I could understand “obnoxious,” but “selfish” was unfair and demoralizing and totally undermined the progress we had made.

What to Do about Mama? p. 28

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. She proceeded to tell me that, although David and I provided Mom with very good physical care, the emotional care we provided was terrible; in fact, it “sucked.”

What to Do about Mama? p. 26

When my health had declined to the point that I needed two knee replacements, arrangements were made for my mother-in-law to move in with her daughter. I felt that I had not lived up to the commitment I had made, which was caused me a lot of anxiety.  The Hospice Spiritual Advisor gave me an assignment, which is a great example to illustrate the theme of the DailyCaring article How the Positive Effects of Gratitude Reduce Caregiver Stress.

Blessings of Mom Living in Our Household

• Example set for our children. Our youngest daughter said, “Thank you, Mom, for taking care of my Grandma and being such a good example for me.”

• The grandchildren have had an opportunity to know and love Great Grandma. This was in contrast to Shelley’s comment that they really didn’t see their grandparents much growing up.

• I was able to give my mother-in-law the gift of my children and grandchildren. I am proud of the love, support, and appreciation they show her.

• I had the opportunity to demonstrate to my mother-in-law 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

Image result for caregiver gratitude clip art

It’s too hard to see her like that

Posted: October 19, 2020 | Author: | Filed under: Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , | Leave a comment
Image result for old person near death clip art

The Imperfect Caregiver by Bobbi Carducci:
Caregiver You Are Not Alone: Thomas’ Story

“When family members opt out of helping care for someone it’s not unusual for them to say, “It’s too hard to see him or her like that.”

This Common Experience Was Our Experience, Too

My husband’s brother initiated the idea of their mother moving from Florida to live closer to family. He and his wife did not, however, want the responsibility of being her caregiver, so she moved to our town. Later, I became her primary caregiver when she moved into our home. When Mom hit the slippery slope of physical decline, my sister-in-law excused her husband from visiting frequently saying, as above, “It’s too hard for him to see her like that.”

“My mother-in-law’s decline was especially difficult for my
brother-in-law; his wife made a point to express this to me very
specifically. He had no confidence in his ability to be alone with
her. With tears in his eyes, he told me that he saw himself as the
“last bastion of propriety” in his relationship with his mother. I did
understand how difficult it is to watch a loved one’s decline; his
brother, after all, faced it every day. I felt, however, that was not
an acceptable excuse for not assuming responsibility. During that
same conversation, his wife also made this comment: ‘My priority
is my children. I am only a daughter-in-law.’ I was amazed.”

What to Do about Mama? p. 20

Burdening Our Kids–Revisited

Posted: October 11, 2020 | Author: | Filed under: Emotional and Physical Challenges | Tags: , , , , | 1 Comment

“I cared for my parents until they passed. What do I do to make sure I do NOT put my kids through that?”
See the source image
An AgingCare.com question (http://www.agingcare.com)
Asked by Sunflowerpower

What is wrong with dying? I am not so sure that extending life to the point of wringing every last drop of breath out of life is the right thing to do. That is, unless one has unlimited financial resources to buy professional care 24/7. We should not have to put a price on elder care but for most people, the child or children end up bearing the work. Are we sure we want to continue extending life when life is a body and no memory? Or a good mind but nothing but pain for the body? I read these stories about all the caregivers doing their best to care for their parents at the cost of their own lives and it is so sad. Been there, done that. I am NOT talking about assisted suicide. I am saying if an older person has no realistic future of living life on their own, what is wrong with stopping life-extending medications?

Not being a burden on our children is a major concern of the baby boomer generation, as I expressed on the first page of “What to Do about Mama?”

I am a baby boomer—part of the ‘sandwich generation’ that is taking care of our elderly parents while still providing support for our children.  As I write this, I am feeling that the time has come.  Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation.  And they are so young!  They are, after all, our children!  (p.1)

What to Do about Mama? p. 2

And again on the last page:

In the light of my caregiving experience, and with the hope that my children will not have to face avoidable stress, I pledge that: 1) I will not leave my children the burden of my messes; 2) If my children become my caregivers I will not to be stubborn and dead set in my ways; 3) I will relinquish control (at least some of it) to them; and 4) When, in my old age, if I do the things I’ve said I won’t—they may, as I’ve told them, ‘Just show me the book!

What to Do about Mama? p. 303

The issue of extending life is also addressed in the book.

I acknowledge that broaching the topic of death and dying with parents and family members is very difficult and even painful. We may have living wills that specify that ‘no extraordinary measures’ be taken, but how do we and our family members interpret that directive in the midst of a highly emotional crisis situation? The issue is confusing and complicated to say the least—one that presents huge challenges for the elderly and their caretakers.

I would respectfully suggest, however, that it would behoove us all to have this difficult discussion well before the time of need arises so that decisions for treatment are based on our loved one’s expressed wishes.” 

What to Do about Mama? p. 228

The issue of sustaining life with medications presented a major decision making point in the caregiving situation that motivated me to write “What to Do about Mama? See “A Major Decision” pp. 30-32.

My mother-in-law questioned the Hospice nurse about discontinuing her arrhythmia drug citing contra-indications with circulation.  She was looking for a “fixable reason” for her poor circulation, which was causing increasingly numerous ulcers to form on her legs and feet.  We knew, of course, that advanced COPD (chronic obstructive pulmonary disease) caused by a fifty-year smoking habit, is not fixable, and agreed that it was time to have a family discussion about Mom’s medications. My husband consulted his siblings to assess their opinions about Mom discontinuing her heart drugs. The children were all in agreement that their mother had had a good life, and that they would rather see her go quickly and gently like their father than watch her slowly disintegrate. He then had a very difficult discussion with his mother, and she agreed that it was in her best interest to stop her heart drugs.

Barbara Matthews

Setting personal boundaries in caregiving

Posted: September 22, 2020 | Author: | Filed under: Caregiving--Positives and Negatives, Emotional and Physical Challenges, Impact on Family Relationships | Tags: , , , , , , , , | 2 Comments

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 | 

https://pameladwilson.com/caregiving-ruined-my-life-how-to-take-back-your-life-the-caring-generation-radio-program/

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:

*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.

What to Do about Mama? p. 39

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
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