A Guide to Caring for Aging Family Members

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Again, Quality vs. Quantity of Life

In an AgingCare.com article, May 08, 2014, Coy F. Cross discusses “Quality or Quantity of Life?”   Visit http://www.agingcare.com
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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.

My response:

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.

Barbara Matthews

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Burdening Our Kids

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

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!'” (p. 222)

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.”  p. 160

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?”

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. See full account on pp. 24-26.

Barbara Matthews

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