Tough Conversations

Solutions Through Compassionate Communication.

When Is It Time?

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Tough Conversations is pleased to feature an article by Guest Blogger Susy Murphy who is a respected Aging Life Care Manager and Owner of Debra Levy Eldercare Associates in Maryland.

Making The Difficult Decision to Move a Family Member to Assisted Living or Memory Care
(reprinted with permission)

When is it timeOne of the most difficult decisions that any family faces is making the decision about when, or if, moving a family member to assisted living is the right thing to do. As Aging Life Care™ Managers, this is often when we are called on, whether to schedule an office consult with concerned adult children to discuss options or to meet with a spouse in their home and assess whether or not their husband or wife can still be safely cared for there. It is nearly always an emotionally fraught decision. Sometimes adult children promised their parents that they would “never put them in a home,” whatever that may mean in today’s world where some skilled nursing facilities actually more closely resemble a Hilton Garden Inn with nurses, and long before being faced with the realities of a difficult diagnosis, such as Lewy Body Dementia. [Read more…]

Lessons from a Wedding

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We recently attended our son’s wedding. It was beautiful. The weather was perfect and our son and his new wife couldn’t have looked more radiant. What amazed me the most, however, was the amount of planning that went into preparing for the big day.

Lessons From a Wedding

Months before the ceremony our son’s fiancé (and he) began the process. Planning included the size and color of the calligraphy of the invitation, floral arrangements, seating at the wedding dinner, down to the ‘official’ color of the event.

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Moving Beyond Fear

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“Don’t move the way fear makes you move.” This line from the poet Rumi is good advice for a tough conversation.

Fear moves us toward anger or withdrawal. Toward hasty, negative assumptions. Toward defensiveness, self-justification. Or we can’t move at all:  we’re paralyzed.

Rumi says, “Keep walking, there’s no place to get to. Don’t try to see through the distances.” I’d say, “Keep talking, though you don’t know where it will lead.” The “not knowing” opens new possibilities.

But to keep talking you have to start. Many necessary conversations never begin because of fear.  Fear of being hurt, of hurting the other, of another’s rejection or anger. Going deeper, there’s the fear of being wrong, of having to change. Of having to apologize. Or forgive.

Okay, so how do we move away from fear?

Say the issue is a parent’s failing health and unexpressed last wishes. One way is to ask yourself, “If we don’t have this conversation, what’s the best thing that can happen?”

Maybe Mom will die peacefully in her sleep and you’ll never have to talk about medical powers of attorney or directives.

But you can’t bank on that. So what’s the worst possible outcome?

A parade of horribles comes to mind: disagreements with Dad and/or siblings about hospice, heroic measures, feeding tubes, hydration. Something Mom might hate if she were able to speak for herself. Prolonged suffering. Astronomical medical bills. Guilt. Blame. Family estrangement that survives Mom’s death.

This best-case/ worst-case analysis can move us from the fight/flight state of mind to a calmer starting point. Focus on Mom’s needs and the family’s love for her and try to put that into gentle words. “Mom, there’s something I’d (we’d) like to talk about. But it’s hard to know how to begin. We need to know your thoughts. Can we talk?”

Don’t move the way fear makes you move. Acknowledge the fear, then move with compassion through the fear to a solution and deeper family understanding.

Carolyn

Tube Tales

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(The following stories are true; only the names have been changed.)
1. My friend Linda’s grandmother was in a coma. The doctors had put her on life support. After several months in this condition Linda’s mother, Gail, was unsure how to proceed even though she was named grandmother’s health care proxy. So Gail invited the 12 closest family members to grandmother’s bedside. Once assembled, she asked them to vote on whether to remove life support. Nine voted yea; three nay. Life support was withdrawn, and grandmother died within hours. The three nays realized that removing life support made sense and were relieved to know that grandmother expired painlessly.
2. Twenty years ago Stuart moved to Washington having renounced his family ties. We knew nothing about Stuart other than he had previously lived in upstate New York. Stuart developed a virulent form of abdominal cancer, which went untreated. While visiting a friend his condition deteriorated such that he was taken by emergency vehicle to a nearby hospital, placed on life support, and administered morphine. Stuart had no living will nor a DNR order. (Do Not Resuscitate.) His friends were at a loss how to proceed as was the medical staff. After three days the doctors decided to reduce the morphine drip to the point that Stuart regained consciousness. When he did, a doctor asked him what he wanted to do. Stuart mumbled that he wanted to ‘go home.’ His answer gave the doctors sufficient justification to remove life support and transfer him to a hospice where he died a few days later.
3. When my cousin Joan’s mother was admitted to the ICU of a local hospital, it was clear that she might never regain consciousness. Joan’s older brother, Sam, was her mother’s health care proxy. Both Joan and her younger sister Carol did not want their mother to remain indefinitely on life support. Sam did, and because he was named health care proxy, he prevailed. Their mother remained in a coma for the next two years before she passed away. Given the sisters’ anguish over their mother’s prolonged coma and the huge cost the family incurred, they haven’t spoken with Sam since.
Moral of the stories? Plan ahead. Make sure that everyone in the family whether they suffer from a chronic disease or not has a living will or a health care power of attorney, or proxy. Try to reach consensus on whether to use life support or allow nature to take its course. One of the best tools we’ve found is “Five Questions” which has become America’s most popular living will because it is written in everyday language and helps start and structure important conversations about care in times of serious illness. See www.agingwithdignity.org.
Sig Cohen

Over 40 With a Living Parent? Some Questions to Consider

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Last week we described our recent workshop and named some questions we posed to older parents and their surprising answers. This week we look at the questions and answers for their kids:

1. What is your greatest concern about your parents’ aging process?
[Driving safety was a huge concern. Some didn’t want their children to ride with the parent. But adult kids are torn. They are sensitive to the loss of freedom if parents can’t go when and where they want. Some expressed an obligation to offer alternative transportation and thought about how that would complicate their own lives.]

2. What do you want to know about your parents’ future plans that you hesitate to ask?
[Many said they don’t know whether parents want to be cremated, what kind of service they would want, or where they want to be buried. They hesitate to raise the topic of a parent’s death, regardless of how near or far in the future that seems. They suspect the parents themselves may not have thought it through.]
[But a few said parents had actually written out the details of their own funerals: hymns, who will speak for them, and even a liturgy.]

3. How satisfied are you with your knowledge of your parents’ finances?
[If their parents had not volunteered the information, most children did not want to ask directly, for fear of sounding greedy or eager for the parent to pass. They agreed they might be able to ask for a list of bank accounts and insurance policies, etc. Many children had knowledge; others had none. Sometimes one sibling did know and was willing to share the information.]

4. How much do you want to be involved in helping your parents make health care decisions?
[Even if a child or siblings did have a power of attorney for health care, they hoped the parent would also prepare a “living will” or a Five Wishes document, so that all the siblings would be on the same page. That way, if a hard decision has to be made, all will know what the parent wants. One man told me that his brother, who had the POA, extended their mother’s suffering for two years because she left no instructions and he could not bring himself to let her go. The siblings are still not speaking to him.]

5. Where do you imagine your parents will be living later in their lives?
[Most expect the parents to live in their own homes as long as possible, then go into some assisted living near the child. If parents live in another state, they anticipate some resistance from the parent. Some are worried about the cost of assisted living.]

6. What’s your deepest hope for your parents as they age?
[That they can be lucid, peaceful and pain-free and feel loved.]

What questions would you like to ask your parents? Please share your thoughts by writing a comment.

Carolyn