Usually I toss my copy of the annual Medicare and You Handbook into my ‘read file.’ But with our book coming out in January (see below), I carefully reviewed this year’s issue. Its 122 pages are chock-full of information on coverage like chronic care management services (p.34) and yearly wellness visits (p.49). But the following three items, I believe, merit special attention.
A man I’ll call George hired my friend, a social worker, to visit his “Uncle Milt.” George hoped my friend would persuade Milt, 96, to move from the home he loved on the East Coast to a nursing home in Nebraska near George. Uncle Milt, however, was firmly planted and said so loud and clear.
The social worker found Milt alert and engaging. She gave him a “mini-mental” test that showed minor memory loss but no dementia. Milt’s two long-time health-care aides were present. They kept him clean and well-fed and took him on outings. A neighbor looked in on Milt every evening. Clearly they all shared a deep affection for Milt. He seemed happy.
My friend informed George that Milt could safely remain in his home and recommended he be allowed to do so.
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)
One 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…]
(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.
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.
When I mentioned to my friend Phyllis that my partner and I work with families who experience intergenerational issues around end of life, legacy and change of residence, she looked despairingly at me and said: “I don’t think you can help my family.”
She went on to tell me about her grandmother who at 86 lives alone on a small farm in South Carolina. Her grandmother refuses help of any kind from any of her family members. This ruggedly independent matriarch has lived alone for years. Despite a recent illness she won’t grant any of her adult children a health care or a financial power of attorney. Her will, if indeed she has one, remains a deep secret.
When I asked why, she replied that her grandmother believes that ”The Good Lord will provide.”
As admirable as her faith may be, it has become a source of frustration for other family members who fear what could happen if grandmother becomes helpless with no power of attorney, or dies with no will nor any other legal safeguards that can ensure that family members understand in advance her grandmother’s wishes. There’s also a need to reduce the chance of any misunderstandings among the siblings about who inherits what.
Phyllis said that her grandmother’s sister shared this philosophy. When she died, disputes arose among her children because there was no understanding of who was to receive what. Sadly the dispute became a court battle resulting in thousands of dollars in court costs and lawyers fees. Apparently Phyllis’ grandmother has chosen to ignore the painful and expensive outcome of relying only on the Good Lord.
Phyllis concluded her tale of woe by stating that nothing can change her grandmother’s attitude.
Have you experienced this with any of your family members? If you have and were able to encourage that family member to change his or her mind, write us. We can always learn from others’ experience.
When I asked my friend Jane about her Dad’s recent triple bypass, I never expected the torrent of concern I unleashed. Her Dad’s operation was the least of her worries. It turned out that Margo was her ‘top concern.’
Since Jane’s parents divorced years ago, her Dad had become very lonely. So, he became involved with Margo, 15 years his junior, who now lives in Jane’s Dad’s home. While Margo provides her Dad the companionship he desires, she contributes little or nothing to the household. Dad pays for food, lodging, and other expenses.
I also learned that while her Dad’s home is titled to Jane, Jane had no idea whether her Dad had changed his will or put Margo on his bank accounts. I asked Jane whether she had a financial Power of Attorney (POA) for her Dad. Negative. That meant that, among other things, Dad could put Margo on his checking account and make her a joint owner of any of his other assets without Jane being aware of it. (He can do it, but at least Jane can find out what’s up.)
Jane’s other worry is whether Margo will move out when her Dad dies. Since Margo has every intention of living with Jane’s Dad while he is alive, she might object to moving out when he dies. This could force Jane to take legal action, something that could last months.
Jane realizes she’s in a difficult spot. She doesn’t want to upset her Dad’s relationship with Margo, but she doesn’t want Margo to take undue advantage of her Dad.
I suggested to Jane that this may be the time for a tough conversation with her Dad. Not about her Dad splitting up with Margo. According to Jane they seem truly devoted to each other. But to make sure that Margo doesn’t try to take control of her Dad’s assets nor remain in the house after he dies. This would also include discussing Jane’s having Power of Attorney her Dad’s financial affairs and having a copy of his will.
Jane agreed, and the last I heard she and her Dad were going to execute a POA. While this may not give Jane the control she would like to have, it at least allows her to be aware of any changes in his financial affairs.
At Tough Conversations we’re constantly looking for resources to inform us about end-of-life decision-making and support. A great resource is Five Wishes®, the “first living will that talks about your personal, emotional, and spiritual needs as well as your medical needs.” Like any document that deals with serious illness and end-of-life concerns, you should ideally discuss with family members before deciding whether to complete it.
Five Wishes® meets the legal requirements in 42 states and the District of Columbia and has helped millions of people plan for and receive the kind of care they want. Five Wishes® is unique among all other advance directives and living wills because it is user-friendly and easy to complete. It is available in 26 languages and in Braille.
Five Wishes® began when Jim Towey, Mother Teresa’s legal advisor, was working and living in her Washington, DC-based hospice. Mother Teresa’s life and work became the inspirational basis for the document, which has been called “the first living will with a heart and soul.”
Copies of Five Wishes® are available for $5 each (only $1 each in quantities of 25 or more) from Aging with Dignity, P.O. Box 1661, Tallahassee FL, visiting the website: www.agingwithdignity.org, or calling 888-5-WISHES. A national non-profit organization, Aging with Dignity’s mission is to affirm and safeguard the dignity of individuals as they age and to promote better care for those near the end of life.
We believe that the 12-page document has value for all of us. It contains a wealth of information regarding end of life treatment and support. Here is an abbreviated version of the document:
Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can’t Make Them for Myself
Wish 2: My Wish for the Kind of Medical Treatment I Want or Don’t Want
Wish 3. My Wish for How Comfortable I Want to Be
Wish 4: My Wish For How I Want People to Treat Me
Wish 5: My Wish for What I Want My Loved Ones to Know
We hope you’ll look into Five Wishes® and consider whether and how it can assist you and your family members decide on how to best plan for end-of-life decision-making.