A Guide to Caring for Aging Family Members

Archive for October, 2014

Shifting Gears: Katie’s Story, Part One.

shifting gears too

I guess I’ve been blogging for about nine months now. As of late, I have not been as prolific as I had been.  That’s because I have mainly limited myself to topics that I addressed in my book, What to Do about Mama? Although I have done some multiples on a few topics, I usually try to avoid the repetition.  So, with over 70 posts, my blogging is slowing down a bit.

Therefore, I think it is time to “shift gears,” so to speak. I am currently busy with being an informal “consultant” to a friend who was part of my caregiving story, as well as a contributor to What to Do about Mama?  I will call my friend “Katie” because that is the fictional name I used for her in the book.

Unfortunately, Katie is now a “poster child” for the fragility of life. I will tell you Katie’s story in short episodes.  Maybe that way you will read to the end of the post where the little blue words “leave a comment” appear.  (I wish “comments” appeared at the top, but I like the layout and colors–they match the book cover.)  But honestly?  I would love to hear from you.

Barbara Matthews

Link

What to Do about Mama?- Book Review

What to Do about Mama?- Book Review.
by Victoria Brewster, MSWwtdam_fc

http://northernmsw.wordpress.com/ – Blog on aging, advocacy, end of life, healthcare, mental health, and social work topics/issues
Twitter: @97socialworker

 

Optimist-Pessimist-or Realist

On the #SeniorCare journey — Which type of caregiver are you: optimist, pessimist, or realist? The answer may affect your stress level: http://www.caring.com/blogs/self-caring/attitude-affects-caregiving
Photo: On the #SeniorCare journey -- Which type of caregiver are you: optimist, pessimist, or realist? The answer may affect your stress level: http://www.caring.com/blogs/self-caring/attitude-affects-caregiving
I think I’m a realist. Here is my take on caregiving—in a nutshell. Caregivers get involved with caregiving to meet a need, solve a problem, or deal w/ a crisis. Although the situation often improves—for a while—caregivers often do not take the following into account:  1) the process of aging cannot be controlled; 2) needs will increase—sometimes over many years; or 3) how heavy the burden can become.  Therefore it is important to have realistic expectations about caregiving; to remember that we’re all moving in one direction through life; to be prepared for the unexpected; to communicate expectations clearly to the “others;” and to develop a caregiving contract of shared responsibility to be signed-off on by all involved.
Barbara Matthews

 

Two Upcoming Book Events

book event

Wednesday, October 15, 2014
2:30 pm

Roxy’s Chatterbox Café
254 W. Main St.
Hummelstown, PA

Door Prizes and Refreshments

book signing

Sunday, October 19, 2014
3:00-5:00 pm

Midtown Scholar Bookstore
1302 North 3rd St.
Harrisburg, PA

Featuring:

 Barbara Matthews and Barbara Trainin Blank,  co-authors
“What to Do about Mama?

and

Ann Stewart,  author
“Twice a Child”

Both events feature a caregiving discussion format of the following topics:

Assuming Caregiving Responsibilities
The Roles and Responsibilities of Caregivers
The Emotional and Physical Impact of Caregiving
Family Relations
Finances
Residual Difficulties
Positives and Negatives of Caregiving

It never goes away and it has made me who I am.

NorthernMSW: Advocacy, Aging, Healthcare & Social Work Issues…..

Grief in Children

03Oct

Grief in Children Rea L. Ginsberg, LCSW-C, ACSW, BCD- Guest Blogger

Child hands

The above post struck me to my core–and this is why:

Nearly sixty years. It never goes away.  It formed who I became.  In the late 50’s and early 60’s my father’s lymphoma was a “secret” that only his wife and children knew.  After informing her 11 and 15 year old children that their father had a fatal illness, our mother rarely spoke to us about it—except, for an example, in retort to my question, “Can we have another baby?”  “You know your father is going to die!”  Bottling up became so profoundly painful, that both my brother and I became outspoken adults.  For me, that doesn’t always have good results, but it is better than the alternative.  The writing of my book, “What to Do about Mama?” and my blog of the same name, have brought my formative years into even greater focus.  This article has made me wonder how I made it through adulthood without more “pathological developmental distortion or arrest.”  Also see my blog post for more on the topic of grief:  Different Perspectives on Grief

Here are some excerpts that really hit home:

  • It seems senseless to debate which types of grief are the worst.  Which are the hardest to bear.  Every form hurts so very far beyond normal limits, beyond ordinary words.  Profound sadness.  It takes our breath away.  It aches that much.  Every form requires extraordinary coping skills.  Every form holds its hazards.  However, this childhood form does appear to be among the very worst.
  • Only in childhood can death deprive an individual of so much opportunity to love and be loved and face him with so difficult a task of adaptation….The death of a parent engenders a longing of incomparable amount, intensity, and longevity.”
  • The child’s loss of a parent is one of the most difficult forms of bereavement.
  • Recovery is arduous, exhausting, and hard to accomplish.  The death of a parent is life-altering on a permanent basis.  It is a severe emotional wound.  It is traumatic.
  • “Although we know that, after such a loss, acute mourning will subside, we also know that a part of us shall remain inconsolable and never find a substitute.  No matter what we believe may fill the gap…we will nevertheless remain changed forever…”
  • From their many experiences with children, child psychotherapists tend to agree that the child’s mourning process never does entirely end, nor should it.  The mental representation of the lost loved one, the memories and an accompanying degree of longing, remain with the child through childhood and adulthood – throughout his lifetime.
  • The child is indeed bereaved, but he himself is in need of a caregiver.
  • This troublesome outlook for the child can be mitigated by the understanding and compassionate presence of the other parent or another adult.  Even an older sibling can soften the hardship.  Someone must be there to receive and relieve the child’s distress.  The child cannot be left alone to cope with loss and still remain healthy – both in mind and in body.  Sorrow must be shared.  Every person needs to know he is not alone with grief.  The child is especially vulnerable and needy in this respect.
  • Children draw great strength from their caregivers.  The child needs the love and gentle guidance of a perceptive, patient, and capable caregiver.
  • We know from those studies that children were least traumatized when the primary caregiver – usually but not always the mother – remained close, loving, calming, and comforting.  Children’s reactions to loss depend mainly on the reactions of the primary caregiver.
  • The interaction between internal and external forces decides between the possibility of normal developmental progress and the incidence of pathological developmental distortion or arrest.”
  • If the child’s caregiver is the other parent, we have come full circle, returning to the bereaved caregiver.  Grief is not optional.   The caregiver must attend to his own grief and to the grief of his child.  Perhaps, in some important sense, parent and child comfort, soothe, and reassure each other.  They support one another.  The feeling of deep sorrow is shared.  The process and progress of the caregiver’s bereavement is then highly significant not only for himself but also for his child.  The child’s mastery of his situation depends substantially on the caregiver.  It is a large responsibility. Honesty and openness are virtually always good policy with children.  The subject of death will carefully follow this pathway – when the caregiver is strong enough and wise enough to pursue it.  He will know intuitively how to listen well and respond to the child’s expressions of grief.
  • No hurry to heal.  No pressure to “snap out of it.”  Honesty and openness.  Love.  Memory.  A firm, soothing hand to hold.  Talking.  It takes only one human being who cares.  That is the route to strength and growth.

Would you choose to die at 75?

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.

Why I Hope to Die at 75

To see the full article, click on:

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

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.

See:  A Controversial Issue Worthy of Comments

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:

Productivity 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

Barbara Matthews

A review of the Sharon Marchisello’s novel Going Home

I’ve been away visiting my daughter, who moved away with her family (and three of my grandchildren) in August. I’ve been a spoiled grandma. They lived here (15 minutes away and in the same zip code) since grandchild #1 was one month old. Anyway, while my husband drove, I had the pleasure of reading a book uninterrupted: This is my 5-star review of Going Home by Sharon Marchisello.

Ernest & Edgar Literary Blog

by Barbara Matthews

gh_fcThe doorbell rang…” and in through that doorway Sharon Marchisello issues forth one bombshell after another in her contemporary murder mystery, Going Home.

Michelle DePalma arrives at her mother’s home to find that the door is uncharacteristically wide open. Upon entering, she finds a young woman dead on the floor with her mother hovering nearby—seemingly unaware of what has taken place in the foyer of her home.

As Marchisello weaves her intricate tale, the doorway introduces:

  • Unknown family: “I’m Isabella Rogers, and this is my daughter, Giovanna. I’m your daughter-in-law.”
  • A policeman: “Michelle, I’m afraid the evidence is pointing to your mother.”
  • A man with a raised baseball bat: “Where’s that crazy old broad that killed my Brittany?”
  • A potential suspect who appears in: “The same vehicle I had passed on my way up the street the day I arrived, the day Brittany had died!”

Going…

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