Create memories, enjoyment

Caring for a seriously ill loved one is difficult at any time of year. But the holidays can compound the stress as caregivers, especially those who mark the season in grand fashion, seek balance between the consuming responsibilities of meeting their loved ones needs and creating a memorable celebration.

Whether it’s continuing with longtime traditions or introducing new ones, the keys to a meaningful holiday while facing end-of-life are to:

* avoid overwhelming your loved one by scaling activities to the realities of the situation;

* think outside-the-box if elaborate annual traditions are not feasible; and

* remember that there is no right or wrong approach.

“The most important point is to remember that the stress of caregiving may leave little energy for the grand celebrations families have held in the past- so it is perfectly acceptable to scale down or simplify to keep it even more memorable,” advises Karen Monts, practice manager, counseling services for Hospice of Michigan.

Monts suggests considering such outside-the-box plans as:

* Opting for a family trip, if your loved one can travel;

* Donating as a family to your loved one’s favorite cause;

* Dining together at a favorite restaurant;

* Focusing on faith traditions, attending a religious program together; or

* Creating keepsakes and reliving memories such as taking a family picture, creating a memory stone, or recalling funny stories.

Monts also suggests that if having all the decorative bells and whistles are an absolute must and your loved one has been “the ‘king or queen’ of decorating, consider recruiting the help of friends and extended family, or hiring professional decorators.”

Thinking outside-the-box can also include hosting your celebration or special event on a day other than the actual holiday to ensure your loved one can fully participate.

“It’s important that family members continue to create memories with their loved ones,” said Monts. “About 10 years ago, a patient’s daughter decided to move up her wedding and held her ceremony in our facility between Thanksgiving and Christmas so that she could share the moment with her father. We helped plan the ceremony, and one of our spiritual care coordinators officiated. That was the gift she gave him that holiday. He relaxed after the ceremony, happy because he believed she was safe and taken care of. He died the following week. Unique experiences like that resonate with families and allow the memories of a final holiday season with a loved one to be cherished rather than ignored.”

Monts adds, “Many patients and families are incredibly hopeful, even at the end-of-life. They expect to celebrate. Even if holiday plans don’t materialize, families shouldn’t feel guilty. There is hope in the planning.”

In her 26 years in hospice care, Monts has learned many hospice patients want to “remember good relationships and the positive impact they’ve had on others.” The holidays offer a perfect opportunity for friends and family to share “how a loved one wants to be remembered and discuss that their life had—and still has—meaning.”

Monts suggests families build lasting memories by interviewing each other. “There are profound understandings that come out of that process,” she said.

There are many online resources to help get the conversation started. Story Corps (https://storycorps.org/) is a site Smith references to spark talks with patients, exploring such questions as:

What is your proudest moment?

How do you want to be remembered?

What is your most spiritual moment?

What are your thoughts about death and the after-life?

Do you have any regrets or last wishes?

What advice do you have for me, my children, or even children to come in our family?

Starting these conversations is typically the most difficult step in talking about sensitive and intimate feelings and viewpoints. But once the ice is broken, these exchanges can produce tremendous rewards.

In addition to planning ahead, Monts believes the only other absolutes in celebrating the holidays when caring for a seriously ill loved one are to “remember the only ‘should’ is doing what is best for you and your family during this time and to simply enjoy the holidays with your loved one, not matter how you choose to celebrate.”

For more information, call 888-247-5701 or visit www.hom.org.

If you knew you had a limited time to live, how would you want to spend your time? Do your family members and friends understand how you’d want to spend those precious moments? Would you know how to honor their final wishes?

Talking about end-of-life preferences is never an easy conversation, but it’s an important one to have to ensure that you and your loved ones’ wishes for care and comfort are properly honored when serious illness sets in. With November’s designation as National Hospice & Palliative Care Month, it’s the perfect opportunity to begin or revisit this difficult discussion, before the reality of illness makes it a much more emotional process.

“We often see a distinct difference in the experiences of the patients and families we serve who have documented their thoughts on end-of-life care and those who have not,” said Michael Paletta MD, FAAHPM, Hospice of Michigan vice president, medical affairs and chief medical officer. “Having shared preferences regarding medical intervention and comfort care, those who’ve pre-planned enter this difficult time with a peace of mind that comes from already knowing the answers to tough decisions that may lie ahead.”

Most of us wouldn’t think of going into a major life event without advance thought and planning—buying a house, getting married, and entering retirement. Yet many don’t plan for one of the most critical life experiences we all will face. Taking the time now to clarify your final wishes and understand those of your loved ones can ensure that preferences regarding medical intervention, as well as personal, emotional and spiritual desires, deliver the best quality of life, even in the midst of serious illness.

“If you’re having trouble starting an end-of-life conversation with family and friends, look for opportunities to segue into it from other discussions,” said HOM Social Worker Susan Mueller, MSW. “The news of the day could be the catalyst. The death of a celebrity may open the door. Engage older family members by asking about the deaths of their loved ones. Such communication provides an opportunity to naturally shift into talking about your own mortality in a way that’s comfortable for everyone.”

As you and your loved ones gather for this sensitive conversation, consider the following:

*Who do you want making your healthcare decisions if you are unable? Sometimes a spouse or family member is the best choice. Sometimes not. It’s most important to choose someone who knows you very well and can make difficult decisions to ensure your wishes are followed.

*What kind of medical treatment do you or don’t you want? It’s more than just deciding whether or not you want life support. It’s identifying your definition of life support and expressing any religious or personal beliefs that will help those around you understand which intervention(s) you find acceptable.

*How comfortable do you want to be? Completely comfortable seems the obvious answer, but if that leaves you more drowsy and sleepy than you otherwise would be is there a balance you’d like to achieve? But it’s not just pain management. Is there favorite music you’d like played and readings you’d like to hear? What about massage therapies and personal care? No end-of-life wish is too insignificant and should be shared.

*What do you want your loved ones to know? Providing clear direction regarding funeral and burial arrangements is vital. But, it’s also an opportunity to leave a personal legacy. Sharing your expressions of love, forgiveness and peace, even your thoughts and acceptance of death itself, can bring years of comfort to your friends and family.

Nobody knows what the future will hold, but planning and communicating end-of-life wishes can provide some certainty during a difficult time. Hospice of Michigan offers Have you had the talk? (www.haveyouhadthetalk.com) one of many online resources that can help you and your loved ones discuss and document your preferences. For those needing help broaching the subject, Hospice of Michigan spiritual care advisors and social workers are also available to offer tips on getting the conversation started. Having the difficult discussion today means you and your loved ones can live all of your tomorrows in dignity, comfort and peace.

For more information, call 888-247-5701 or visit www.hom.org.

Financial worries compound the stress that families feel when a loved one is dying. Judy Trepeck of the Michigan Association of CPAs led efforts to provide resources to help families be financially prepared for the end of life.

Every day, when Judy Trepeck goes to the mailbox, she wonders if she’s going to find another bill she has to pay. That’s been pretty much the norm since her stepfather died four months ago, and she stepped in to manage his financial affairs.  She’s working through her grief and a myriad of issues related to settling his estate.

“Our job as a survivor begins the day a loved one’s life ends,” said Trepeck, senior vice president and chief knowledge officer for the Michigan Association of CPAs. “What I’m learning now, for example, is that you have to give notice to creditors for four months in case someone has a claim against the estate. There’s a process that starts after death that needs to be managed, but nobody tells you about that.  Who knew?”

 Trepeck’s colleagues at MICPA knew. In fact, they convened a task force of certified public accountants from across the state to address the matter. After nine months of work, including some long nights during tax season, the organization produced “Financial Affairs at the End of Life” for Hospice of Michigan patients and families.

The booklet, which can be downloaded at www.micpa.org, provides a wealth of assessment and planning tools designed to ensure families can be financially prepared for the end of life.  Sections range from caring for dependents to advanced directives to estate planning with a single goal in mind: Providing objective financial information and resources.

“We had been talking at a Hospice of Michigan board meeting about the fact that social workers were often asked about financial issues for a family and didn’t have the resources or the wherewithal to answer those questions,” said Trepeck, who also serves on HOM’s board of directors. “We saw the need at MICPA to give social workers the objective information they needed to provide to the families – from an honest broker standpoint, if you will. Our goal was to be a resource book that has all the information on the various things that families should think about, then gives them phone numbers or points them to websites.””

For MICPA, which has nearly 18,000 member-CPAs statewide, the opportunity to fill an educational need was motivation for the project.  For Hospice of Michigan, the largest non-profit provider of hospice and palliative care services in the state, the resulting booklet filled a gap.

“We walk alongside patients and families during one of the most stressful times of life,” said Robert Cahill, president and CEO of Hospice of Michigan. “Financial worries compound that stress and magnify it. We are grateful to the MICPA for giving our social workers and clinicians a valuable tool for their toolboxes with ‘Financial Affairs.’”

The booklet, which has gone through multiple revisions and updates, encourages families to start by gathering detailed information on their assets and liabilities.  Sections detail what kinds of information is needed, right down to the location of safety deposit boxes and a list of employer fringe benefits.

The Planning section focuses on family, offering lots of questions to prompt discussion before decisions are made when it comes to guardians, property and advanced directives. Whom does the patient trust? Whom do the children love and trust? Is this what the patient wants? Important but difficult conversations to have.

The section also covers the basic financial tools including life insurance, pensions and other retirement accounts, as well as basic estate planning including wills, probate and trusts.

An extensive “Meeting Financial Needs” section provides an overview on short-term and long-term expenses and commitments, which often undergo a significant shift during a prolonged illness or death. Accessing resources, managing affairs and handling funeral expenses are all covered at length.

The third and final section is the one Trepeck finds herself referring to a lot: “Survivor’s Issues.” It offers a practical timeline and checklist of tasks immediately after death, two weeks after, and a month after, detailing the types of benefits from Social Security, life insurance and retirement accounts that are available.

“It’s a gift for people to be able to leave their families with detailed financial information and end-of-life directives,” Trepeck said. “While they may not be easy conversations to have, they are essential to a family’s peace of mind because during a serious illness or after a death, you’re not going to be able to get this information, let alone be in a frame of mind to process the conversation.”

MICPA developed “Financial Affairs at the End of Life” for Hospice of Michigan patients and families. The booklet can be downloaded free of charge, along with the organization’s Financial Inventory, at https://www.micpa.org/resource-center/resources-for-the-public/financial-literacy.

From Hospice of Michigan

When a family’s loved one is near the end of life, it can force everyone to endure financial and emotional strain, creating the perfect environment for new conflicts to arise and old ones to resurface.

Ramona Hancock, a Hospice of Michigan social worker, explains that the stress of losing a loved one, coupled with family disagreements, caregiver demands, financial struggles, cultural beliefs or the fear of death, can ignite a fuse.

As a social worker, one of Hancock’s many roles is often to help patients and their families resolve conflicts.

“In hospice, a social worker is the go-to person for anything not related to symptom management,” Hancock says. “That often means performing the role of a counselor to patients and their caregivers, although given the time frame, solving conflict at end-of-life is a lot more like crisis management than long-term counseling. Our goal is to help both the patient and the caregiver find peace and allow the patient to die comfortably.””

Hancock explains that conflict during a patient’s final days can make the dying process more challenging. And unresolved issues typically lead to a more difficult grieving process for family members. These are just some of the reasons it’s important to solve family conflict before death.

“One of the most common conflicts I see is when the family and patient are in a different place,” Hancock notes. “The patient has decided to forego medical treatment and has accepted life is nearing the end but the family isn’t ready. Another common conflict that arises is when the patient’s primary caregiver feels burned out or taken advantage of. The caregiver may direct anger at other family members who haven’t ‘stepped up.’ Sometimes the frustration is directed at the patient and, in these cases, anger is typically accompanied by guilt.”

Hancock says that regardless of what is causing the conflict, the first step in solving it is typically to listen to the patient and the family.

“While every situation is different, when I recognize conflict affecting a family, the first thing I usually do is talk to the patient and the family,” she explains. “I offer support, but let them determine what that support is. Often, people just want to talk. I try to remind the patient and family members to recognize and consider what the other person is feeling. That simple step often goes a long way in bringing the family together. When recognition and consideration of feelings aren’t enough, we can arrange a family meeting, which might even involve the nurse and social worker.

“At the end of the day, we try to remind the patient and family members the end-of-life transition is a meaningful time. It’s important for the family to be on the same page so the focus can be placed on spending quality time together in the time that’s left.”

Hancock explains that while HOM does everything in its power to bring a patient peace as the final days draw near, unfortunately, some conflicts are deeply rooted and too complicated to resolve.

“We walk into a small window of our patients lives. It’s important to recognize that there may have been a long history before we stepped in and events will continue to unfold after we’re gone,” Hancock adds. “While we do all we can to help the patient and family find peace, we must recognize that there are some things we just can’t fix. In these situations we focus on listening to our patients and helping them find acceptance.”

March is National Social Workers Month, and the theme this year is “Forging Solutions out of Challenges.”Hospice of Michigan would like to thank and acknowledge the important role that social workers play in hospice and palliative care. For more information on Hospice of Michigan and its services contact 888-247-5701 or visit www.hom.org. For more information on Social Workers Month and the value social workers provide in healthcare, visit www.socialworkers.org.

When is it time to call hospice? While the H word scares people, Hospice of Michigan says that making the call early can enhance quality of life at the end of life.

Jane is suffering from cancer. It started in her liver and has now spread to her lungs and embedded in her bones. The chemo and radiation are not helping. But her doctor is yet to bring up hospice, the H word so many don’t want to hear.

“Americans are a death-denying culture,” explains Dr. Michael Paletta, chief medical officer at Hospice of Michigan and hospice physician for 20 years. “Sometimes we don’t want to accept our own mortality. Often, patients wait until a doctor mentions end-of-life before they will even begin to wrap their minds around it. But, if patients don’t ask, doctors may continue to search out treatment options, even if a cure is unlikely.””

Paletta explains that doctors don’t always offer hospice as an option because they don’t want to deny patients a ray of hope. “Doctors take the decline and death of patients very personally,” Paletta said. They don’t want to be responsible for denying a patient the opportunity to recover, and they want to know they have done everything possible to cure their patients of illness.”

In modern medicine, it’s unusual for a doctor to feel there is nothing else to offer. There is always one more experimental drug or treatment to try; the question is what benefit will the treatment offer the patient and at what cost.”

While a doctor may not want to deny hope, Paletta says it can be just as harmful to foster a patient’s unrealistic vision of recovery.

“Hope comes in many shapes and forms,” Paletta said. “Instead of hoping for a cure that doesn’t exist, patients can hope to manage their pain and symptoms and improve their quality of life. This isn’t giving up hope; this is hoping for something that can actually happen and devoting energy to something that has proven to be valuable.”

Continue to pray for a miracle, but put things in place that will help you and your family. Perhaps the miracle provided is a controlled, dignified and peaceful ending of a celebrated life.”

But when is the right time to consider hospice for you or your loved one?

“If treatments are not going well, and if the treatment path the doctor initially laid out doesn’t seem to be working, it might be the right time to ask your doctor what’s next and when you should consider hospice,” Paletta explained. “If your doctor says it’s too soon to discuss hospice, try to get a better understanding of what the road ahead looks like in terms of treatment options. Ask when it will be appropriate to consider hospice and request specifics. This will help you gain a better understanding of the path you’re on and if you and your doctor have the same goals.”

“If you aren’t satisfied with the plan your doctor has in place, seek a second option. I’m always surprised to hear that people don’t consult with another doctor. They seem to think this will offend the physician, but it’s usually welcomed. Good doctors realize that most of the time their recommendations are reinforced and a second option can actually enhance the faith and trust their patients have in them.””

Paletta notes that considering hospice isn’t a decision, it’s understanding your options. “Hospice is a choice that patients and families can make, but no one should ever be forced to make that decision,” Paletta said. “If you decide you’re not ready for hospice and you want to continue to seek out treatments, you can wait. And then it’s an informed waiting that has a specific end point rather than delaying or avoiding the decision.””

Paletta suggests that those suffering from a severe or terminal illness should contact hospice sooner rather than later, even if they aren’t necessarily ready to begin hospice care.

“It’s always better for patients to reach out to a hospice organization early, rather than in a time of crisis. This gives them the time and ability to gather information about the services offered, choose the hospice organization that suits them best and make an informed decision. Hospice can even help with things like advanced directives and selecting a patient advocate.”

“And perhaps most importantly, by looking into hospice options early in your illness, you’ve put yourself in a position where you can make the decision that’s right for you and take that pressure off your family.”

For more information on Hospice of Michigan and the services it provides, contact 888.247.5701 or visit www.hom.org.

Hospice of Michigan spiritual care advisors help patients discover a sense of peace and closure as they prepare to die.

From Hospice of Michigan

When we are young and healthy, we can feel invincible. There’s plenty of time – and opportunity to solve life’s problems and make one’s mark.

But when faced with death, perspective can change quickly and so can priorities. This is when we begin to evaluate the meaning of life and contemplate the legacy we will leave behind.

Rev. Ronald White sees this time and time again.  As a spiritual care advisor with Hospice of Michigan, it’s White’s job and his mission to help hospice patients discover a sense of peace and closure as they prepare to die.

“Many people assume spiritual care is about religion, and while it can be, it can mean something different to everyone,” White says. “Spiritual care is not intended to change patients’ belief system, but accept patients wherever they are on their journey and provide support at the end of life.

“When a person is dying, reality can hit hard. It’s often as they face the end that people look to find closure and mend relationships. This could be with God, family and friends or the world at large.”

The need for spiritual care differs from person to person. Some find solace in their religious faith; others may need to evaluate the meaning of their life or come to terms with important issues.

Spiritual care advisors like White provide support for patients and their families as physical, emotional and spiritual needs arise. This can mean helping patients through a journey of faith, reconnecting them with their church, helping to mend family rifts or simply listening to patients while they share things that are weighing on them.

Many times, when facing death, people seek forgiveness, White explains. “We’ll often try to reconnect family members and bring them together for a family meeting so they can sort through issues while there is still time. Many times we see that the family members don’t even remember what the disagreement was about, just that something happened. In circumstances like this, talking things out usually helps. But other times issues are deeply rooted and can’t be resolved. While we can’t fix all problems, we make our best effort.”

When you can’t mend a situation, White notes that sometimes it’s enough to just be there to listen.

“Letting patients tell their story and talk through problems can often lead to acceptance,” White says. “As spiritual care advisors, our conversations with patients are confidential. Sometimes patients have things weighing on them that they don’t want their family to know about, but they still need to share with someone. Knowing that we can be their confidant allows them to open up to us and find a sense of peace.”

White explains that some of his most important work is with veterans.

“Many veterans have a lot of guilt when they near the end-of-life,” White said. “They are dealing with things they saw or did in the name of war—often things they’ve never shared with anyone. When we work with vets, we know we can’t change what happened, so we spend a lot of time talking. We ask them about the duties they had, where they served and how they were involved. These questions can lead to meaningful conversations and often times helps veterans share the things that are weighing on them. Sometimes just talking through an issue with someone provides acceptance and closure.”

White notes that anxiety at end-of-life can cause unnecessary pain – which is why the role of a spiritual care advisor is so important.

“Providing comfort to patients and their families is our number one goal,” White adds. “Helping patients find solace and closure allows them to die a good death. This is something that provides peace for both the patient and their family.”