In response to Joy Johnson’s articleChallenges of dying at home, revisited — The Memories Project
When I worked as an Assessor at the Area Agency on Aging, I heard only rave reviews about Hospice Services. Our own family experience, which I write about in my book What to Do about Mama? was also positive.
A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living.What to Do about Mama? p 170
Families often overlook or do not consider hospice when they feel they don’t need it yet. “There is a tenacious and lasting perception that hospice comes in only when people are on their deathbeds. Of course, hospice does take care of dying patients, but that is certainly not all it does. Hospice also helps caregivers by providing home-health aides. It gives emotional and spiritual support to the family as well as to the patient. Hospice loves to come in and help people enjoy everything they can do in life.What to Do about Mama? p 170
However, all circumstances are not the same. My daughter-in-law’s mother passed away surrounded by family. Her husband, sister, and children all pulled together and shared the responsibility for her care, augmenting the services hospice provided. Her wishes were honored and she spend as much time with family as she could. I was told that when she died, there was a smile on her face. I suppose you could say that her death was about as good as a death can be. But this family communicated openly and confronted death according to their mother’s wishes.
My son-in-law’s (SIL) mother also had hospice services at home. But there had been more denial and less opportunity to let her wishes be known.
(See previous blog: The We Don’t Need It Yet Phenomenon)
Hospice had brought in a bed so SIL’s Mom could sleep in a room downstairs. During the night she got up to go to the bathroom and fell. She had no hands-on-help because her husband was sleeping in the bedroom upstairs. The next morning the hospice nurse sent her patient to the local hospice facility—to be more safe, I presume. This is not the place she wanted to be, and she passed away soon afterward.
Talk about it beforehand. You won’t regret that you did.
Readers and Followers:
I’ve come to a point that I am ready for a reprieve from my involvement with caregiving–at least for a while. I realize that this issue will one day reappear in my life in one form or another, so I will keep the door open to revisiting What to Do about Mama? in the future.
I’ve noticed that a lot of bloggers just sort of disappear from blogging, and I don’t want to do that to you folks who actually read or follow my blog.
The AgingCare.com article: New Beginnings Are Possible for Caregivers
(Home » Caregiver Support » Emotional Wellbeing » Articles » New Beginnings Are Possible for Caregivers ) by Carol Bradley Bursak struck me as relevant to my book writing and blogging endeavor. When I read it, I asked myself the question, “How has caregiving changed me?” So I’ve decided to address this topic in my “potentially” last blog post (at least for the foreseeable future).
Does caregiving change you—either while you are a caregiver or once your caregiving has ended? I think caregivers would respond to that question in a variety of ways noting:
positives and negatives
resignations about what is and possibilities of what can be
CLICK ON THE LINK ABOVE TO READ THE ARTICLE
SEE THE FOLLOWING SYNOPSIS
SKIP TO: “How I Have Changed since Caregiving”
SYNOPSIS: In “New Beginnings are Possible for Caregivers,” Carol Bursak states that:
- The sameness of each day in your life as a caregiver can, at times, seem overwhelming and permanent.
- New beginnings for caregivers are far easier to suggest than to accomplish, especially since fresh beginnings generally come after significant endings.
- One route to finding what may be possible is journaling. Journaling can be a tool to examine where you were before caregiving, where you are now, and what you’d like your life to be if you could magically make it so.
Bursak goes on to say, “There’s something therapeutic about writing out how we feel and then reading the words that have come from our heart as well as our head.”
She then provides the following “loose guidelines” to structure your journaling:
Book one: vent your feelings and reinvent yourself
- Section one of book one is for venting.
- Section two is a place to note your caregiving routines
and what you’d want to do differently if you could.
- Section three is for digging into your past.
- Section four is about the future.
- Section five is for dreaming.
- Section six is for getting real.
Book two: Brainstorm how to take back your life.
Book three: Express your gratitude
- Remember that you’ve grown as a person who understands the needs of others.
- Include self-forgiveness for being imperfect.
In all the books:
Note your feelings
Bursak summarizes her article with the following: “The reality of ongoing caregiving is that most caregivers won’t have spectacular new beginnings as long as they are in the caregiving mode. However, self-examination and self-forgiveness can lead us toward a renewed outlook on life. This, in turn, may lead us to examine the ways that we can have a richer existence, within the confines of our caregiving obligations. And yes, that does count as a new beginning.”
HOW I HAVE CHANGED SINCE CAREGIVING:
I share the article “New Beginnings are Possible for Caregivers,” because for me…
to maintain my emotional health during caregiving
While I was active in a caregiver’s support group, one of the group leaders suggested to me that I keep a journal, a method found to have a positive impact on physical well-being as well as emotional health.
- Writing about stressful events helps you to both face and deal with the situations that negatively impact your health. It knocks down the walls you have built so that you can gain understanding of yourself and your life circumstances.
- Writing about the difficult problems and feelings helps you gain understanding of other points of view. It is an effective tool to help you resolve differences with others.
- Writing about painful emotions helps decrease the power they have over you so you feel more at ease, able to move beyond the past and stay in the present.
Although I did not follow the detailed journaling format described by Carol Bursak, it was my dumb luck that most of the elements she indicated were applied—mainly by facing reality, noting feelings, and being honest. It was in this way that I was finally able to put an end to the incessant agonizing and SCROLLING I had been experiencing.
After my mother-in-law passed away I thought, “I have all this stuff; what can I do with it?” So, I wrote a book. The journal account simplified the process. My objective was to use caregiver knowledge and experience to help other caregivers overcome, or at least minimize, common challenges.
HOW I HAVE CHANGED:
- I experienced sudden and rapid physical challenges when my mother-in-law’s caregiving needs increased dramatically and family conflict accelerated. I had bilateral knee replacements four years ago, but continue to work out daily in an attempt to stave off physical decline.
- I have healed through the cathartic process of writing a book, blogging, and speaking publically about caregiving.
- I have learned to accept that the dynamics of my husband’s relationship with his family have changed, and therefore mine have, too. I understand that the past relationship was defined through his parents and they are now both gone. I accept that it is my husband’s right to choose to “NOT” have a relationship, even if I find that choice to be incredibly sad. I hold no grudges or resentment toward my husband’s family, and refuse to get mired down in feelings of being used or unappreciated. Life does not come with a manual. Everyone makes mistakes.
- I am preparing to leave my children in a much better place in regard to caregiving. That does not mean that I am absolving them of responsibility. I will not become stubborn or resistant to the “changing of the guard” that will come someday. It’s just that I am preplanning and organizing so that they will not have to make difficult decisions alone or clean up my messes. Although my husband refuses at this time to sell our home and move into a condominium nearer to our children, I am open to doing so, or even to living in a “mother-in-law house” on their property or having an “electronic tracking system” in our home. (See the Patriot News article “Staying in Touch” The Patriot-News | Page A13 Thursday, 7 May 2015 by Brandon Baily, the Associated Press, San Francisco @ harrisburgpatriotnews.pa.newsmemory.com/publink.php?shareid=0ffc7eaed
- My will is in order. My house has been decluttered. Pictures are mounted in books. I have completed an inventory of my belongings and have insisted that my children indicate their preferences. I am either indicating who gets what or designating who is responsible for distributing various categories.
- I have expressed my desire to “Age in Place” and am in the process of discussing the various options to accomplish this plan. I have planned ahead to pay for in-home support. I have made it clear that my children need to share the responsibility for any care that we need. I have also made it clear that I believe in quality versus quantity of life, and what steps are to be taken concerning life and death decisions.
- I have written a book, What to Do about Mama? which is a manual, of sorts, for them to follow.
- I realize I cannot control life. I’m just doing the best I can.
- I have been able to inform and assist others with caregiving problems and situations. I am fulfilled by using my knowledge and experience to help. Caregiving either impacts or will impact almost everyone.
- I understand that What to Do about Mama? is not a “sexy” topic, but believe that being prepared is better than reacting in a crisis mode. Just ask any caregiver.
There’s a TV in the weight room at the gym where I go to attempt to stave off old age. Sometimes I catch the Steve Harvey Show, and have, on a couple of occasions, seen two cute and charming little old ladies who have been best friends for nearly 100 years. At those times I have commented to whomever is around, “I don’t want to live to be 100, but when I see these two ladies I reserve the right to change my mind.”
In The Atlantic article “Why I Hope to Die at 75,” Ezekiel Emanuel (Director of the Clinical Bioethics Department at the U.S. National Institutes of Health, Department Head of Medical Ethics & Health Policy at the University of Pennsylvania, and former advisor on health policy for the Obama Administration) makes a similar remark: “Seventy-five years is all I want to live. I retain the right to change my mind and offer a vigorous and reasoned defense of living as long as possible.”
Emanuel might also say that I am “making a valiant effort to cheat death and prolong life as long as possible”—that I am one of the cultural types he labels, “the American immortal.” But actually, he would be wrong. What I am actually trying to accomplish is maintaining the best physical abilities and quality of life that I can for whatever years remain in my life.
For you see, although I find Emanuel’s chosen age of 75 to be somewhat arbitrary (which he acknowledges) I do, overall, agree with what he has to say. What follows in a synopsis of some of his remarks, which I will illustrate with my own life experiences, as well as previous blog posts. Unfortunately, the older I get the more death-related life experiences I have to relate.
To see the full article, click on:
Why I Hope to Die at 75: An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly.
Ezekiel J. Emanuel is 57 years old, and has the year 2032 as his target date to “check out” because—“Seventy-five. That’s how long I want to live: 75 years.” Now I’ve got to tell you, Ezekiel, that age is making me a little squeamish because it gives me just 9 more years. I don’t think I will have done or seen all that I want to in that amount of time. But it does give me some leverage to say to my husband, “Look Don. We really need to get on the stick and start seeing the world!” (He’s always putting his retirement and our travel off for later.)
But, Emanuel is sure of his position, despite his assertion that : death is a loss; it deprives us of experiences and milestones, of time spent with our spouse and children; and, in short, of all the things we value. But he also sees as simple truths:
- Living too long is also a loss.
- It renders many of us either disabled, or at least faltering and declining.
- It robs us of our creativity and ability to contribute to work, society, and the world.
- It transforms how people experience us, relate to us, and remember us (as no longer vibrant and engaged but feeble, ineffectual, and even pathetic).
My husband and I were his mother’s caregivers for seven years, four of them in our home. This is, indeed, the process of decline we observed on a daily basis. She used to say, “I want to live to 100. I don’t want to miss anything.” One of the thought that crossed my mind at those times was that I do not want my grandchildren to remember me that way.
Emanuel states that by the time he reaches 75, he will have lived a complete life having: loved and been loved; seen his children grown and succeeding; seen the grandchildren launched; pursued life’s projects and made contributions. If he dies after these accomplishments and before he has too many mental or physical limitations, his death will not be a tragedy.
In 1994, my father-in-law passed away suddenly in his sleep one night. He had even played tennis the previous morning. Later, my mother-in-law told me she was not only surprised when she awoke to find him still in bed at 8:00 in the morning, but shocked when she nudged him and he did not respond. Yes, it was a shock, but he died in a way that many of us would “like to go.” Although there was a profound sense of loss, his death was not a tragedy.
On the other hand, my father died in 1963 at the age of 48 after four years of a “secret” illness. He left a young wife and two teenage children behind. He was forever deprived of the ability to say goodbye to life and those he loved. To me, this was a tragedy.
For further information about my life-altering experience, see:
Different Perspectives on Grief
Missing Childhood: The Overlooked Caregivers
People cope with death in many different ways – The Patriot-News
It is important to note, however, that Emanuel is clear:
- He actively opposes legalizing euthanasia and physician-assisted suicide.
- He believes that the focus should be on giving all terminally ill people a good, compassionate death.
- He will limit the amount of health care he will consent to after 75.
I followed with interest (and posted in this blog) the case of Barbara Mancini. I believe it fits well with Emanuel’s discussion about terminal illness. Mancini is a Pennsylvania nurse who was accused of helping her 93-year-old father commit suicide by handing him his partially full prescription bottle of morphine when he asked her to do so. Her father, who was under hospice care, then deliberately took an overdose of the medication because he wanted to die. Mancini has since been acquitted, due to lack of proof that she gave her father his prescription bottle with the intention of helping him commit suicide.
Emanuel states that although Americans may live longer than their parents, they are likely to be more incapacitated, both physically and mentally. In other words, we are growing older, but our older years are not of high quality. Over the past 50 years, health care hasn’t slowed the aging process so much as it has slowed the dying process.
I have a dear friend who was diagnosed with a brain aneurism when she was 64. Because she feared having a stroke, she elected to have brain surgery. She suffered a traumatic brain injury during surgery resulting in a stroke, additional surgery to relieve the pressure on her brain, 6 weeks in a coma, and the inability to use 3 of her 4 limbs. A once vital, vivacious woman, she now lives in a nursing home, a shell of her former self.
But even if half of people 80 and older live with functional limitations, and a third of people 85 and older with Alzheimer’s disease, that still leaves many elderly folks who have escaped physical and mental disability—who are functioning quite well. Emanuel contends, however, that even if we aren’t demented, our mental functioning deteriorates as we grow older. As we move slower with age, we also think slower, and lose our creativity—backing this concept up with the following chart:
Emanuel recognizes that there is more to life than being totally physically fit, productive, and creative, and that many people want to use their life experiences to mentor successive generations. But, he argues that when parents live to 75, children have had the joys of a rich relationship with their parents, but still have enough time for their own lives, out of their parents’ shadows. He feels that living too long places significant burden upon our progeny, stating, “Of course, our children won’t admit it. They love us and fear the loss that will be created by our death. And a loss it will be. A huge loss. They don’t want to confront our mortality, and they certainly don’t want to wish for our death. But even if we manage not to become burdens to them, our shadowing them until their old age is also a loss. And leaving them—and our grandchildren—with memories framed not by our vivacity but by our frailty is the ultimate tragedy.”
My daughter-in-law’s mother passed away last summer 5 months after a sudden diagnosis of colon cancer that had spread to her liver. She opted not to undergo treatment, which might have extended her life, but not have allowed her to live as she wanted. Because she was only 68, her decision was very difficult for her husband and children to accept. I truly admired her for the strength of her convictions and the courage of her choice in making what must have been an incredibly difficult decision.
See: My Counterpart: a Go-To Grammy
So, since Ezekiel Emanuel does not believe in assisted suicide, what does he say he will do, once he has lived to 75?
- “My approach to my health care will completely change. I won’t actively end my life. But I won’t try to prolong it, either. I will stop getting any regular preventive tests, screenings, or interventions. I will accept only palliative—not curative—treatments if I am suffering pain or other disability.”
- “Obviously, a do-not-resuscitate order and a complete advance directive indicating no ventilators, dialysis, surgery, antibiotics, or any other medication—nothing except palliative care even if I am conscious but not mentally competent—have been written and recorded. In short, no life-sustaining interventions. I will die when whatever comes first takes me.”
Emanuel supports the following health care policies:
- He is against using life expectancy as a measure of the quality of health care (i.e. longer life does not translate to better care). He supports biomedical research and the need for more research on Alzheimer’s, the growing disabilities of old age, and chronic conditions—not on prolonging the dying process.
- I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging. Are we to embrace the “American immortal” or my “75 and no more” view?
In summary, Ezekiel Emanuel states: “But 75 defines a clear point in time: for me, 2032. It removes the fuzziness of trying to live as long as possible. Its specificity forces us to think about the end of our lives and engage with the deepest existential questions and ponder what we want to leave our children and grandchildren, our community, our fellow Americans, the world. The deadline also forces each of us to ask whether our consumption is worth our contribution.”
You may want to revisit some of my other older posts about this difficult topic:
The Conversation Project
Hospice: When Should They Get Involved?
Burdening Our Kids Again
Quality vs. Quantity of Life It Pays to Prepare
This column, “God Squad” by Rabbi Marc Gellman examines the moral issues of being honest about terminal illness. Personally, I tend to look at life in terms of “gray areas” rather than black and white. But Rabbi Gellman was clear in his statements:
- The fundamental moral belief about illness is that knowledge conveyed by a doctor belongs to the patient and to no one else.
- As long as therapy is possible, patients ought to take advantage of any clinically proven therapy, however, when therapy is no longer possible it is the patient’s right–and it’s also the right thing to do –to let the end come when it comes. (See my June 29 post “My Counterpart: a Go-To Granny)
- To choose NOT to tell someone they are dying is a paternalistic attitude that is not morally justifiable or spiritually sound. To be deprived of this knowledge is to be deprived of the ability to say goodbye to life and those we love.
I feel that this article will be very reassuring to people who are struggling, or have struggled, with the issue of death and dying. It was also very validating to me, since my life was so profoundly impacted secret-keeping, when my father was lied to about his terminal illness during the late 50’s and early 60’s. (See my August 14 post “Different Perspectives on Grief).
You may want to revisit some of my other older posts about this difficult topic:
In an AgingCare.com article, May 08, 2014, Coy F. Cross discusses “Quality or Quantity of Life?” Visit http://www.agingcare.com
Home » Blog » Life as a Caregiver » Articles » Quality or Quantity of Life?
Another “hard talk” Carol and I had before her diagnosis with ovarian cancer was the need to balance quality of life and quantity of life. Both chemotherapy and radiation can have profound side-effects, some immediate, but gradually dissipating, others causing permanent damage.
How much quality of life are you willing to give up to live longer?
I remember talking with my dad, over his kitchen table, as he was considering high-risk bypass surgery to correct congestive heart failure. He was no longer able to fish or garden, two of his great joys in life. He asked what I would do and I replied, “If I could no longer do the things that brought me joy, I would have the surgery.” He opted for the surgery, had a stroke during the operation, and made his transition a few weeks later.
Carol and I talked about my dad and what we would do in a similar situation; we both agreed, “I would have the surgery.” So even after she opted for surgery and chemotherapy to treat her ovarian cancer, she always had the option, “if this becomes too painful or the residual effects take away my quality of life, I will stop the treatments.”
Discussing these difficult circumstances before the crisis arises makes your decisions and your acceptance easier when decision time comes.
Quality vs. Quantity of Life is very much based on personal value systems. There is not one “right” or “wrong” belief, and convictions on both ends of the continuum demonstrate personal strength. The topic is broached in my book, “What to Do about Mama?” Following is an excerpt from pp 159-160:
During one office visit, my mother-in-law’s doctor said that she was in very poor condition, and that if she was 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—the lady who opted to take every recourse available because she wanted to live to 100 and had stated, “I don’t want to miss anything.”
I recall another assessment I administered with a woman well over 90. She told me a story about her marriage. She had wedded a much younger man and had her only son later in life. It was ironic to her that her husband had preceded her in death. She said that her son was a widower and remarked that I reminded her of her deceased daughter-in-law. Later in the assessment, she asked me, “Are you married?” Afterward, when I was walking to my car, I burst out laughing when it suddenly dawned on me that she was exploring my status of availability for her son. I think it was important for her to know he was taken care of before she was ready to depart this earth.
And here is another reason one senior is motivated, just like the Energizer Bunny, to keep going and going and going . . .
Her mother hadn’t “planned” to live past 85. But once Patricia’s siblings began to compile a family history, she expressed the desire to see the work completed. It gave her satisfaction that her children, who hadn’t always gotten along, were cooperating on the project.
Conversely, I met other clients who lost their motivation to continue living. They stopped eating and were diagnosed with “failure to thrive.” This type of situation was often an enigma to the children and certainly put them in a quandary about decision making.
According to current medical standards, it is important to follow the individual’s wishes. I wonder, however, how many times people’s lives are extended not because of the parents’ choice, but because of the inability of children to let go.
At the end of his life, Marianne’s father had a stroke. But he was able to indicate that he didn’t want extraordinary measures. The family brought in hospice for his care.
Nathan’s sister, the nurse in the family, had trouble accepting the concept of eliminating anything that would prolong her father’s life.
Julie advises families to discuss—ahead of time—such issues as heroic efforts and sustaining life if there is little or no quality of life.
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.