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Aging

Making your Own Decision About End of Life

by Barbara Bates Sedoric
written by Barbara Bates Sedoric

Hope is Not a Plan, But Planning Will Generate Hope

It’s here. Some call it the “silver tsunami” while others reference it as “the greying of America”. Nearly half of the “sandwich“ generation have a parent over age 65 and are raising young children or supporting grown children. Making your Own Decision about End of Life

Alarmingly, thousands of critically important end-of-life and after death decisions are currently being made without the benefit of advanced planning. While “hope” is not a plan, planning realizes hope.
Have you ever considered all the decisions that will need to be made when someone, including yourself, dies?

Are you leaving it up to “let’s hope my spouse or kids will know what to do” or “let’s hope someone will find what they need” or “let’s hope they will remember my wishes”?

Death is inevitable. The topic of planning for death is a hard one to face and discuss with people you care about. It is difficult to think about all the things that you need to get done in order to “get your affairs in order”. But the result of not having a clear plan in the end is that those that you care about are left to only “hope” to do their best to piece together any conversations or verbal instructions that might have occurred in the past.

Unfortunately, relying on memories and hope alone tends to be problematic.
During my career in estates and trusts, I witnessed many chaotic family scenes at widows’ homes while helping search for vital information during an emotionally challenging time. I observed the heartache and enormous stress families endured as they navigated the decision-making process and the many tasks that confronted them after the death of a loved one. Making your Own Decision about End of Life

Several years ago, my mother died suddenly. We spent countless hours searching for documents, double checking facts, and gathering the personal details about her life so we could write an obituary. We did not know what her wishes were, so we relied on hoping we knew what she would have liked to have happened. We were left without a set of clear directions to make myriad decisions and necessary arrangements. We could only hope for the best.

Those experiences taught me that “winging it” is not a good plan and “hoping for the best” does not necessarily bring about the peaceful outcome that everyone is looking for when death happens. No one wants to die, but no one has ever escaped it. Planning ahead however, brings peace of mind.
LastingMatters was launched to help any adult, at any age, prepare for what happens after death using a comprehensive and easy-to-use planning guide. The LastingMatters Organizer was created to prepare anyone for life’s biggest event by compiling, organizing, and documenting one’s wishes, intentions and important personal information all together in one location. Making your

Own Decision about End of Life
The LastingMatters Organizer is a straightforward guide that walks you through everything from what to do with your belongings to how you want your life celebrated. Below are easy to understand prompts you can use to help your loved ones be prepared to carry out your wishes:

• Who should be notified when you die?
• What kind of service would you like?
• Do you wish to be cremated or buried?
• What would you like to have included in your obituary?
• Where are your passwords listed?
• Who should take care of your pets?
• Where are your bank accounts?
• Which family traditions would you like to pass on?
• What happens to all of your “treasures”?

Whether your death is sudden or expected, your loved ones will be dealing with a lot of emotion in the period right after your passing. Unfortunately, this is a time when family and friends will need to take immediate and critical decisions.

Being hopeful means having the faith and confidence that someone will take care of what matters most to you. Planning ahead creates positive feelings for you and for those left behind wrapping up and honoring your life. Hope is achieved when everything turns out as you planned.

Making a clear plan for life’s greatest transition means that you care about your family and friends. The gift of information will save time, money, stress, and the family pressures often associated with death.
In the end, it’s better to be prepared for the worst, and hope for the best. Making your Own Decision about End of Life

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Patient Advocate vs Geriatric Care Manager
Caregiving

Patient Advocate vs Geriatric Care Manager

by Carol Marak
written by Carol Marak

A few weeks ago, a reader asked, “Can you tell me the differences between a geriatric care manager and a patient advocate? I hear the two terms frequently and wonder if they are the same?” Here are the basic differences:

A Patient Advocate can assist anyone of any age – not limited to someone who is elderly, or at least over a ‘certain age,’ as a geriatric case manager would be.

A Geriatric Care Manager does not focus strictly on healthcare. Their work is broader with some emphasis on finances, housing, and other aspects of life that change as we age.

A Geriatric Care Manager serves as stand-in provider when families cannot be around.

The list of tasks include:

  • Conduct care-planning assessments to identify needs.
  • Put a care plan together; executing that plan.
  • Screen and monitor hired personal caregivers.
  • Act as a liaison to families.
  • Assist with moving clients to or from different care settings.
  • Review financial, legal, or medical issues and referring clients to experts.
  • Provide crisis intervention.–Provide client and family education.
  • Visit clients on a regular, routine basis to make sure they are safe, doing well, eating properly, and taking needed medications.
  • Make necessary medical appointments and assure client gets to them.
  • Identify agencies and/or social services and other programs that the client can use.
  • Monitor the elder’s finances and paying bills.

Patient advocates help navigate all areas of the healthcare industry including,

  • Help you research and select the best health insurance.
  • Track paperwork and records.
  • Review medical bills for accuracy.
  • Negotiate medical bills with your providers.
  • File insurance, social security, and disability claims.
  • Dispute and negotiate claim denials.
  • Research diagnosis and all treatment options.
  • Assist you in getting a second opinion.
  • Prepare and accompany you to doctor’s appointments.
  • Provide hospital bedside monitoring.
  • Review your medications.
  • Provide End of Life planning, and assist with the paperwork (i.e. living wills, POST, DNRs, Advance Directives, etc.)
  • Make recommendations for in-home care, assisted living facilities, or nursing homes.

 

The individuals who hire a geriatric care manager include families and adult children of relatives too far away, banks and trust officers, physicians, attorneys, hospitals, social service providers, gerontology professionals, and senior housing communities.

Individuals hire patient advocates when they want help finding a new doctor, in the hospital and have no one nearby to check on them, confused about the medications and concerned about allergic reactions, need help searching and selecting a specialist, need help navigating the clinical trial landscape, or need help securing financial resources for treatments.

Carol Marak, aging advocate, syndicated columnist, and editor at Seniorcare.com. She earned the Fundamentals of Gerontology Certificate from UC Davis, School of Gerontology.

Get on the waitlist for my Facebook subscription group or my weekly newsletter and learn how to plan for aging well. Send an email to carol@seniorcare.com and say you’re interested in the group or newsletter.

 

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Senior man in hospice
Caregiving

If It’s Time for Hospice – Here’s some Help

by Guest Blogger
written by Guest Blogger

When someone tells you it’s time to call hospice for someone you love, it’s one of the toughest bits of news you’ll ever hear. However, when you do get that news, you’ll still need good information. Here are a few tips.

Find the Right Fit

First of all, you have a choice about which hospice agency or provider will give care to your loved one. You will often be given the names of one, sometimes up to three, agencies that provide hospice care. A doctor, a hospital social worker, your elder’s nurse practitioner or someone at your elder’s care facility usually gives hospice agency referrals.

You can call one of these agencies and/or you can do your own research on which agencies have the best reputation in your elder’s community. You have a choice. You don’t have to use one of the agencies that was referred to you. Remember this.

Sometimes it is very convenient to use a referral. Often, the person or organization referring the hospice agency to you has experience with that agency. They refer agencies that work well with the system that shares their name. That’s good in many ways.

How to identify the right fit –

  • The right hospice provider will understand your elder’s wishes, will work with the family as partners in care, will be very effective communicators and will be responsive to any changes needed or requested.
  • Interview each of the hospice agencies before you select one.
  • Ask neighbors, friends, coworkers (and even on social media) if they have had any experiences good or bad with hospice agencies. Who would they recommend?
  • Read this helpful list from the American Hospice Foundation. americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/
  • Check with your state hospice accreditation agency (search Internet for this in your state) on the reputation of each hospice group you’ve identified. Each state does this differently. You can find out if an agency has any complaints filed against them or if they are currently accredited.
  • A list of hospice associations by state can be found at https://hospicefoundation.org/Hospice-Directory
  • Remember you can change hospice agencies if you are not satisfied. Specifics at Medicare.gov – see next point.

Learn What Medicare Covers in Hospice Care

  • Visit Medicare.gov and use the Search box to find information on Hospice.
  • Download Medicare’s publication on Hospice Care. medicare.gov/Pubs/pdf/02154-Medicare-Hospice-Benefits
  • It is important to know what Medicare does and doesn’t cover in the hospice program. Don’t just rely on the hospice agency personnel to tell you. Verify any information you receive.

Read some Good Information

  • The best book that I’ve found on situations you’ll encounter in end-of-life care is Final Gifts by Maggie Callanan and Patricia Kelley. It is a must-read for families experiencing hospice for the first time. Take the time to read it.Please.
  • Visit hospicefoundation.org – the website of the Hospice Foundation of America. Good info available here on all sorts of topics.
  • National Association of Home Care and Hospice at nahc.org. They have a hospice patient’s bill of rights.

Have the Paperwork in order

  • Make sure your elder has an updated Advance Directive – delineating their wishes for end-of-life care (and that you and their providers have a copy of it)
  • Verify that their will is up-to-date and accessible to their attorneys and/or family members designated to be personal representatives.
  • Review Power of Attorney (POA) documents to make sure they match your elder’s wishes. Provide copies to care providers and anyone designated as POA.

Be a Good Advocate

  • Now is the time to speak out or speak for your elder. Their own voice may grow weaker but your advocacy should grow stronger. Find your most diplomatic voice and use it to make sure your elder’s wishes and your family’s wishes are respected and carried out.

You will make it through. You will. It’s hard, it may be long, but it may also bring some of the best, most touching moments you’ve spent with your elder.

By Suzanne Blankenship

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Caregiving

Does Going on Hospice Mean Giving Up?

by Silverado
written by Silverado

Hospice is a special kind of care focused on providing patients with a terminal illness comfort and dignity as their disease takes its course. Because hospice means that treatment will no longer be focused on curing the disease, many families feel that they are giving up on their loved one. While it may be easy to think that, understanding what hospice provides in the context of the patient, their family, and the overall disease progression can provide a new perspective on choosing hospice.

Things to consider about hospice:

A doctor will only place an order for hospice care when they believe curative programs have done all they can. In some cases providing curative treatments to terminal patients can bring added stress and discomfort while hospice will ensure a more comfortable path to the disease’s eventual conclusion.

In some cases, the reduction of stress and strain can actually give patients more time.*

Hospice provides extra help and resources to the family, allowing them to better use the time they have with their loved one and reduce some financial burdens of care.

Many special hospice programs are focused on dignity in death, meaning that the last memories of a loved one can be much happier.

There are many positive reasons for accepting a suggestion of hospice care. To hear a doctor discuss why choosing hospice does not mean giving up, visit this page.

* A 2007 study that looked at Medicare beneficiaries with some of the most common diagnoses leading to death, found that patients who received hospice services lived on average, 29 days longer than those who did not receive hospice care. This study, published in the Journal of Pain and Symptom Management (March 2007) looked at 4,493 terminally ill patients with either congestive heart failure or cancer of the breast, colon, lung, pancreas, or prostate.

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Caregiving

What Hospice Can Do For Your Loved One and You

by Silverado
written by Silverado

November is National Hospice & Palliative Care Month. Although the concept of hospice care has been around for centuries, it is still an area of medical practice that many people today aren’t aware of. Hospice provides comfort and support during the final stages of one’s life. It does more than just meet the physical needs of patients. In many cases, patients require more than just physical comfort. It may be that the patient has spiritual or psychosocial needs that could be fulfilled before their passing. Hospice offers many resources and programs to meet these needs and ensure the patient has dignity and is at peace at the end of their journey.

A Painless Departure

Medication is often used during hospice to relieve any pain that the patient may be going through. Controlling pain is a significant part of allowing a patient to pass away with dignity and gives the patient and their family a chance to share their final moments. Morphine is a common medication used during this process, however, for some individuals, the side effects outweigh the benefits. In these cases, alternative methods of pain relief would be considered.

At Peace with the Mind and Soul

Hospice is accompanied by various programs to meet the needs of not only the patient’s but also their families and friends’ mind and soul. Hospices might provide families opportunities to collect the experiences and memories of their loved one into tangible objects, such as a DVD or a book so that they will always have a piece of them after they move on. At Silverado Hospice, these are known as Memory Catchers. Patients can come from various cultural or religious backgrounds, and they may want that reflected in the way they are cared for and pass away. Hospice can accommodate for any cultural traditions or religious practices they would like incorporated. Grief counseling and bereavement support is also provided to the patient’s family and friends to help deal with their loss.

We Honor Veterans

Those who serve our country in the armed forces are deserving of special honor for their bravery and dedication. Nowhere is this truer than at the end of a veteran’s life, so many hospices, including Silverado Hospice, are proud to partner with We Honor Veterans to help provide care that honors the individual and their service. We Honor Veterans is a program of the National Hospice and Palliative Care Organization, run in collaboration with the Department of Veteran’s Affairs. Through this program, hospices are able to accommodate for the specific needs that veterans often have. These include providing care and support specific to traumas and wars they served in and care focused on population, such as homelessness, substance abuse, and PTSD.

Perhaps one of the best things hospice can do is provide these benefits without adding additional financial burden to the family. Hospice is funded by Medicare, Medicaid and also by most individual insurers for individuals who have a six-month or less terminal prognosis. When needing hospice, it’s important to learn about the hospice benefits, available coverage and hospice care providers near you.

 

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Caregiving

Answers to 5 most Frequently Asked Hospice Questions

by Silverado
written by Silverado

While most people have heard of hospice, a surprising number don’t have a complete understanding of the actual details of the method and purpose of it. November has been declared National Hospice and Palliative Care Month by the National Hospice and Palliative Care Organization (NHPCO), a time to help build awareness of comfort-based care among those it may benefit.

Here are just a few common hospice questions and answers to them:

What is the purpose of hospice?
Hospice is a change of focus from curative treatments to a different set of goals – comfort and quality of life. Comfort care includes physical therapy, spiritual & emotional support, companionship and even the granting of life-long wishes. Hospice gives the patient and their family the opportunity to enjoy life and celebrate the bonds and memories they share.

How does hospice care start?
When a physician makes a prognosis that a patient has six months or less to live they may place an order for hospice care. At this point, a hospice provider can be contacted to start the hospice admission process (please note that “admission” refers to the start of service and does not necessarily reflect the patient being physically admitted to a facility or new location).

Will hospice make my loved one die sooner?
The goal of hospice is to provide comfort as the natural process of dying takes its course. In no way is there any effort or intention to hasten a patient’s death while on hospice, just to provide comfort while the patient’s journey comes to an end.

Does insurance cover hospice costs?
Hospice is funded by Medicare, Medicaid and also by most individual insurers. Hospice coverage is available to anyone that has a six-month or less terminal prognosis. The costs associated with most medications and therapies that relieve pain and provide comfort are covered as a part of hospice. Hospice services can actually remove some financial burden families or responsible parties, who may otherwise need to pay out-of-pocket for medications or equipment like beds or wheelchairs.

Does a patient have to go to a hospice facility in order to receive care?
Hospice services can be provided at any number of locations, including most retirement and assisted living facilities. Because comfort and tranquility are the goals, great effort is taken to keep patients in place and prevent stresses involved with hospital readmissions or relocations to a dedicated hospice facility. Silverado does not operate hospice facilities. Our hospice teams work on-site at patients’ residences, be they a private home, assisted living or other facility.

For more answers to common hospice questions, please visit Silverado.com/hospiceFAQs

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Caregiving

How Caregivers Heal after the Sacrifice

by Carol Marak
written by Carol Marak

Family members at times take on the role of caregiving suddenly, assuming the tasks of helping a loved one without knowing what they’re giving up. In most cases, people don’t recognize their sacrifice and view the tasks as administering medications, preparing meals, giving rides, and making arrangements to live with their loved–all for the sake of the right thing to do.

How caregiving effects adults who step into the role:

Helping my parents through elder care put life on hold and I focused on their personal needs more than my own.

Deferred retirement to maintain the 6 figure income to cover my Mother’s assisted living or nursing home expenses, when unable to care for her at home.

Retired to give my Mom 24/7 care, we were able to cover the expenses without any real issues. She lived with me in my home until the end. The cost to me was in a personal and social life.

I gave up every weekend and one week a month, sacrificing 1/4 of my salary to unpaid family leave for mom-care for about 4 years. Eventually, lost my job because she was dying and I would not leave her in home hospice alone.

The Impact of a Care Recipient’s Death

A caregiver’s life is forever changed when the loved one passes away. So much of the caregiver’s sense of self came from providing care. This is the time when the family member feels lost and alone.

The caregiver’s purpose is tied up in caring for another and their identify ripped away. Now, they have no ties to providing care, the caregiver is left without someone to care for. The family member may feel useless and abandoned.

Having invested so much time and attention into giving care, it’s difficult to shift the focus–on you, the caregiver. The following tips are from Crossroads Hospice:

  • Use rituals as a tool to help cope with grief
  • Allow whatever you’re feeling
  • Take time-outs from grieving
  • Seek help from a licensed therapist
  • Reach out to others to re-establish relationships
  • Lean on family and friends
  • Get rest and exercise
  • Practice daily prayer or meditation

 

Family caregiving demands a great deal of life changes to meet the care of a terminally ill loved one. The care you gave diminished the focus on your own needs. So, be gentle with yourself and work towards healing. The role of the caregiver isn’t who you are.

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Aging

How to Make End of Life Plans Part 1

by Kylie Johnson
written by Kylie Johnson

According to the CDC, around 60 percent of U.S. adults have no plan in place for the end of their lives. Consequently, close friends and family are left to sort through personal belongings, funeral arrangements and asset distribution while they’re mourning. Solidifying an end of life plan can ease the minds of everyone involved. Your loved one’s final wishes can be known and recorded as an objective legal document. This gives you and your family a map to follow.

This process involves discussing all the conditions surrounding someone’s death before they die, as opposed to during or after. Having these discussions up front can make the process easier.

This article explains some of the benefits of end of life planning and explains the different parts of it: advance health care directives, memorialization and burial, financial affairs and preferred location of death.

Making health care decisions

An advance health care directive is a form that tells you how your loved ones want to be taken care of, in the case that they’re unable to do so themselves. Advance health care directives are sometimes known as living wills. An advance health care directive or living will is different from a power of attorney, which ensures that an agent of your loved one’s choosing can make medical decisions that are not covered by a living will.

If they’re incapacitated by a disease, an advance care directive will specify whether or not they wish to receive medical treatments such as:

  • CPR
  • Artificial respiration
  • Artificial hydration
  • Feeding tubes
  • Ventilators

 

Advance care directives allow adults of any age to control how they spend their final days.

These forms, once signed by two witnesses, are legal documents with legal power in the United States. While they don’t force your loved one’s doctor to comply, a doctor can’t be legally prosecuted for doing so.

However, not all situations will be covered by the advance health care directive. In the cases that aren’t covered, doctors can consult the health care proxy.

Health care proxy

Named in the advance care directive, the proxy (sometimes known as an “agent”) is legally able to make health care decisions on behalf of the dying person in the event that they’re unable to do so for themselves. The proxy can be anyone: friend, family, it doesn’t matter. This applies only when the advance health care directive doesn’t cover the situation.

How to do it

Download and print the advance health care directive form for your state. After talking it over with your loved one, ask them to fill out the questions or help them fill it out. Have two witnesses over 18 years old present when your loved one signs it.

The document is legally recognized once your loved one and witnesses have signed it, so you’re not required to take it to a lawyer. However, it’s always recommended to get legal consultation on these issues, if you’re able.

Make several copies for yourself, your loved one, concerned family members, your loved one’s physician and faith leaders. Discuss the advance health care directive with your loved one’s physician, and make sure they understand what your loved one wants to avoid confusion.

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Support Systems for Elderly Dealing with Substance Abuse
Aging

Help When It’s Time for Hospice

by Kimberly Johnson
written by Kimberly Johnson

When someone tells you it’s time to call hospice for someone you love, it’s one of the toughest bits of news you’ll ever hear. However, when you do get that news, you’ll still need good information. Here are a few tips. Help When It’s Time for Hospice

Find the Right Fit

First of all, you have a choice about which hospice agency or provider will give care to your loved one. You will often be given the names of one, sometimes up to three, agencies that provide hospice care. A doctor, a hospital social worker, your elder’s nurse practitioner or someone at your elder’s care facility usually gives hospice agency referrals.
You can call one of these agencies and/or you can do your own research on which agencies have the best reputation in your elder’s community. You have a choice. You don’t have to use one of the agencies that was referred to you. Remember this.
Sometimes it is very convenient to use a referral. Often, the person or organization referring the hospice agency to you has experience with that agency. They refer agencies that work well with the system that shares their name. That’s good in many ways. At other times, you’ll want to start fresh. Help When It’s Time for Hospice

How to Identify the Right Fit

  • The right hospice provider will understand your elder’s wishes, will work with the family as partners in care, will be very effective communicators and will be responsive to any changes needed or requested.
  • Interview each of the hospice agencies before you select one.
  • Ask neighbors, friends, coworkers (and even on social media) if they have had any experiences good or bad with hospice agencies. Who would they recommend?
  • Read this helpful list from the American Hospice Foundation.
  • Check with your state hospice accreditation agency (search Internet for this in your state) on the reputation of each hospice group you’ve identified. Each state does this differently. You can find out if an agency has any complaints filed against them or if they are currently accredited.
  • A list of hospice associations by state can be found at https://hospicefoundation.org/Hospice-Directory
  • Remember you can change hospice agencies if you are not satisfied. Specifics at Medicare.gov – see next point.

Learn What Medicare Covers in Hospice Care

  • Visit Medicare.gov and use the Search box to find information on Hospice.
  • Download Medicare’s publication on Hospice Care.
  • It is important to know what Medicare does and doesn’t cover in the hospice program. Don’t just rely on the hospice agency personnel to tell you. Verify any information you receive.

Read some Good Information

  • The best book that I’ve found on situations you’ll encounter in end-of-life care is Final Gifts by Maggie Callanan and Patricia Kelley. It is a must-read for families experiencing hospice for the first time. Take the time to read it. Please.
  • Visit HospiceFoundation.org – the website of the Hospice Foundation of America. Good info available here on all sorts of topics, with some available in Spanish.
  • National Association of Home Care and Hospice at nahc.org. They have a hospice patient’s bill of rights.

Be a Good Advocate

  • Now is the time to speak out or speak for your elder. Their own voice may grow weaker but your advocacy should grow stronger. Find your most diplomatic voice and use it to make sure your elder’s wishes and your family’s wishes are respected and carried out.

You will make it through. You will. It’s hard. It may be long, but it may also bring some of the best, most touching moments you’ve spent with your elder.
Author Suzanne Blankenship of The Elder Care Navigator
Discussing your Aging Care and Death
Making your Own Decision about End of Life
Help When It’s Time for Hospice Help When It’s Time for Hospice Help When It’s Time for Hospice Help When It’s Time for Hospice Help When It’s Time for Hospice

Help When It’s Time for Hospice

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