Respite Care Provided Through Hospice for a Dementia Patient

Hospice Qualifies You for Respite Care

It isn’t what you think.

The hospice representative called to let me know that dad qualified for the program. 

I told her, “I think we’re still okay to hold off.” 

Two weeks later she called, “Do you want to rethink hospice care?” 

I said no. 

My dad’s dementia had become more severe, but he was still talking and eating well and he (mostly) knew who I was. That said, no one knows your person like you do. You can see how they are slipping away while others may not detect it. 

It sounded so final to engage hospice.

We had no idea how quickly he would decline. Within two weeks, he was gone.

Grandpa holding grandson

While I do my best to live my life without regrets, believing first to trust that things do not happen by chance, I wondered how his last days would have been different had we engaged hospice sooner. 

Could I have been with him in those last moments? Would he have been more comfortable? Would my sister and brother and his grandchildren have been able to say good-bye? 

A nurse would have visited him frequently, making sure he was comfortable. We would have had someone to call 24 hours a day, instead of the reluctant once-a-month visit from his doctor’s office. There would have been on-site medication oversight and administration. We would have truly known his condition.

People are either afraid of hospice or wish they’d engaged hospice earlier. I’d like to highlight a few of the facts here, particularly as it relates to dementia, and explain how hospice can support the caregiver with respite care. 

Three points about hospice according to Medicare

  1. To qualify for hospice care, a hospice doctor and your doctor (if you have one) must certify that you’re terminally ill, meaning you have a life expectancy of 6 months or less. 
  2. When you agree to hospice care, you’re agreeing to comfort care (palliative care) instead of care to cure the illness. 
  3. You also must sign a statement choosing hospice care instead of other benefits Medicare covers to treat the terminal illness and related conditions. 

One of the services hospice provides is respite care for the family caregiver. 

Especially when caring for someone with dementia or Alzheimer’s, the mental, emotional and physical toll on the caregiver can be enormous, making respite for the caregiver essential. 

Here are four things to know about respite care through hospice:

  1. Depending on the terminal illness and related conditions, the plan of care the hospice team creates can include inpatient respite care, which is care provided in a Medicare-approved facility (like an inpatient facility, hospital, or nursing home), so that the usual caregiver can rest. 
  2. Your hospice provider will arrange this for you. 
  3. Patient transport is included and you can stay up to 5 days each time you get respite care. 
  4. You can get respite care more than once, but only on an occasional basis. 

For more information about paying for care, check this video by Author Cameron Huddleston.

Dementia is a disease with no cure so it qualifies as terminal, which qualifies a dementia patient for hospice. But how then is life expectancy predicted? 

Crossroads Hospice and Palliative Care, a private company serving a handful of states, mainly in the Eastern U.S., says this about eligibility. For patients with dementia, it may be time to consider hospice when the patient’s physical condition begins to decline. According to Crossroads, some key things to look for include:

  • A diagnosis of other conditions as COPD, CHF, cancer or congenital heart disease
  • An increase in hospitalizations, frequent visits to the doctor and/or trips to the ER
  • A diagnosis or pneumonia or sepsis
  • Weight loss or dehydration due to challenges in eating/drinking
  • Speech limited to six words or less per day
  • Difficult swallowing or choking on liquids or food
  • Urinary and fecal incontinence
  • Unable to sit upright without armrests on chairs or may slip out of chairs and require sitting in special chairs
  • Unable to walk without assistance such as a walker or now requiring a wheelchair
  • Unable to sit up without assistance (will slump over if not supported)
  • No longer able to smile

Check the Hospice Foundation of America for what is included and not included in hospice care, how to choose a provider and how to begin the process.

This Sunday, June 13th marks the two year anniversary of my dad’s last breath on this earth. I’ll be taking off on a family road trip that day and thinking a lot about how much he loved to drive and explore and what an honor it was to call him daddio.

May you find joy in loving one another well.

Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on Ways & Wane she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

How much does it cost to care for an elderly person?

Nursing homes, assisted living, wheelchairs, walkers, prescription copays—the costs add up.

The Alzheimer’s Association estimated end-of-life care costs in 2016 were between $217,820 and $341,651. 

Sometimes, otherwise healthy loved ones need a short dose of care as they recover from an acute medical episode like a broken leg. Other times a fall triggers a path of steady decline with cascading assistance needs. Skilled nursing or assisted living can become necessary, which can be expensive.

If your senior’s health is faltering, costs not covered by insurance add stress to an emotionally charged situation.

There are three key “aging shocks” that surprise families: 

  • uncovered costs of prescription drugs, 
  • the costs of medical care that are not paid by Medicare or private insurance, 
  • the actual costs of private insurance that partially fills in the gaps left by Medicare, and the uncovered costs of long-term care.
    –Health Services Research: The 2030 Problem: Caring for Aging Baby Boomers

For the estimated 7 million individuals who provide long distance care, actual out of pocket expenses amount to almost $5,000 per month. For caregivers who have, or are considering leaving the workforce to care for an ailing parent, the costs are even greater—over $650,000 in forfeited salaries, benefits and pensions.

  • 70% of adults who are 65 years old will require some level of long-term care throughout the rest of their life,
    2018 – U.S. Department of Health and Human Services
  • 2 years: Average number of years that individuals age 65 and older will have a high long-term care need during their lifetimes.
  • $350,174: The average lifetime cost of care for an individual who has dementia,
    2018 – Alzheimer’s Association
  • 1 in 4: The number of adults who are 45 years old or older who are financially unprepared for long-term care expenses,
    2015 – AARP
  • 13% percent of adults will pay at least $150,000 in lifetime long-term care expenses out of their own pocket.
    2018 – U.S. Department of Health and Human Services
Discover hidden ways to save money

looking at cost of nursing home on computerYou can decrease the personal and economic costs of caregiving through careful research and planning. Think about what happens when you go to the grocery store with and without a shopping list. You will feel much better when you know your options and develop back-up plans before you absolutely need to help your senior make a long-term care decision. 

Whether you are currently faced with the dilemma of how to pay for long-term care or are planning for the future, these are the steps to systematically approach the challenge: 

  • Review your senior’s assets
  • Determine potential long-term care cost
  • Evaluate ways to cover long-term care

Step One: Review Your Senior’s Assets

  • Identify all sources of income and expenses for your senior by filling out this Asset Calculator. Even though the results are for California, if you are interested in qualifying for Medicaid now or in the future, it will tell you which assets are Medicaid-exempt.
  • Find and review insurance policies, including life, medical, home, car, etc.
  • Find a financial professional to advise you on managing your senior’s assets.  The Senate Committee on Aging recommends looking for someone with a financial gerontology certification; however the Securities and Exchange Commission does not endorse any financial advisor titles, like elder specialist. 
    • Ask your employer if they offer financial counseling services.

    Step Two: Determine potential long-term care cost.

    You can estimate the cost of your senior’s long-term care using this online calculator. When we researched options for my father, this calculator was pretty accurate for where we live in California.

    Step Three: Evaluate ways to pay for long-term care.

    There are three options to pay for or reduce the cost of long-term care:

    • government programs,
    • insurance programs or
    • personal assets

    We will start with reviewing government programs to find out which costs they cover.

    Find out what Medicare or Medicaid covers.

    video on how much long-term care costsAccording to the U.S. Dept. of Health and Human Services . . . 

    Medicare only pays for long-term care if skilled services or rehabilitative care are required:

    • In a nursing home for a maximum of 100 days, however, the average Medicare covered stay is much shorter (22 days).
    • At home combined with skilled home health or other skilled in-home services. Generally, long-term care services are covered for only for a short period of time.
    • Does not pay for non-skilled assistance with Activities of Daily Living (ADL), which make up the majority of long-term care services.

    Medicaid (program name varies by state):

    • Does pay for the largest share of long-term care services, but to qualify, your senior’s income and assets must be below a certain level and they must meet minimum state eligibility requirements.
    • Ask about federal or state funds available to pay caregivers by contacting the Eldercare Locator. Reach them online or by calling 800-677-1116, Monday – Friday, 9am – 8pm EST. Find your local office number on their website by adding your zip code. They can also inform you about other local caregiving services, like those provided under the National Family Caregiver Support Program. 
    • Call your State Health Insurance Program (SHIP) for FREE advice about Medicare programs. Find the number for your state at
    Time to review your senior’s insurance programs. 
    • If your senior has long-term care insurance, call your senior’s long-term care insurance provider to ask about guidelines for paying a caregiver.
    • If you are wondering if they should get long-term care insurance, check estimates at this government online calculator. Advanced age and physical health can affect one’s ability to qualify for long-term care insurance.
    • If your senior has life insurance, call your senior’s life insurance provider and ask about the following options.
    • Ask about converting life insurance to a Long-Term Care Benefit Plan Account. By exchanging a life insurance policy for a long-term Care Benefit Plan, the benefits go toward long-term care including assisted living, home health care, and nursing homes. Benefits are deposited into a FDIC-insured benefit account that follows federal and state banking regulations and is held by a nationally chartered bank and trust company. The benefit payments are then made directly to the health care facility on a monthly basis.
    • Ask about an Accelerated Death Benefit, in which your senior would receive a tax-free advance on the life insurance death benefit while they are still alive.
    • Ask about the present value of the policy and if it is an option to sell it to pay for long-term care.
    • Ask about selling the policy to a third-party, called a viatical settlement. This option is only available if the insured is terminally ill with a life expectancy of two years or less.
    Time to review their personal assets.
    • If your senior owns a home, search for an authorized reverse mortgage counselor in your state. A reverse mortgage is a special type of home equity loan that allows you to receive cash (to pay for long-term care) against the value of your home without selling it. There are no restrictions on how you spend the money and you can receive it monthly or in one lump sum. You have to be 62 or older. Here is a helpful Consumer Financial Protection reverse mortgage guide.
    • Call a financial advisor and ask about a charitable remainder trust. This trust allows you to use assets to pay for long-term care services while contributing to a charity of their choice and reducing your tax burden at the same time. You can set up the trust so that they receive payments from the trust to use for long-term care services while they are alive.
    • Talk to your employer about covering your senior’s expenses pre-tax on a Flexible Spending Account plan. 

    Find more answers to your long-term care questions with the help of a Digital Social Worker. Step-by-step you will uncover more answers to pay for your senior’s long-term care so it doesn’t dramatically affect your own accounts.

    May you have peace at all times in every way as you help your senior in their waning phase of life.

    Debbie McDonald is the Founder of Ways & Wane, an online platform that helps you help your aging parent. She lives in Northern California with her husband.



    Veteran? Get Paid or Get Money for Caring

    elderly veteran One of our GoKit users found the perfect assisted living facility in Florida for her father. Although at over $4,000 per month, the payments were quite a burden. After a few months, she discovered that her father was eligible for a VA housing benefit of $2,000/month, which was retroactive to the time he moved in. While not every veteran is eligible for this benefit, the VA caregiver program expanded on October 1, 2020 to offer more services.

    Veteran’s Affairs offers two levels of support for caregivers: a general program available to all veterans and their families and a more comprehensive program with more strict criteria. The VA trains regional Caregiver Support Coordinators to help you understand which program addresses your situation at no charge.

    The Program of General Caregiver Support Services (PGCSS) provides resources, education and support to caregivers of Veterans. The Veteran does not need to have a service-connected condition, for which the caregiver is needed, and may have served during any era. No formal application is required.

    While the General program offers a range of supportive services, my favorite is the FREE caregiver coaching. You receive four individual sessions over the course of 2-3 months. The coach will provide you with a workbook and help you with a variety of issues caregivers face. They will coach you in stress management, problem solving, self-care and healthy behaviors, as well as, Veteran safety, behaviors, problems or concerns linked to a diagnosis. Your assigned coach will call you for a total of four sessions, over a two to three-month period.  Learn more about the REACH VA Program. Ask your Caregiver Support Coordinator about it.

    The Program of Comprehensive Assistance for Family Caregivers (PCAFC) is for eligible Veterans who have incurred a serious injury in the line of duty on or before May 7, 1975 or on or after September 11, 2001. This program provides resources, education, support, a financial stipend, and health insurance (if eligible), beneficiary travel (if eligible), to caregivers of eligible Veterans.

    If you are the primary caregiver, you may receive:
    A monthly stipend (paid directly to you as the caregiver.)
    Access to health care insurance through Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), if you do not already have health insurance.
    Mental health counseling.
    Certain beneficiary travel benefits when traveling with the Veteran to appointments. Note for specific details, speak to your Caregiver Support Coordinator.
    At least 30 days of respite care per year, for the Veteran. Respite is short term relief for someone else to care for the Veteran while you take a break.
    If you are the secondary caregiver, you may receive:
    – Mental health counseling.
    – Certain beneficiary travel benefits when traveling with the Veteran to appointments. Note for specific details, speak to your Caregiver Support Coordinator.
    – At least 30 days of respite care, per year for the Veteran. Respite is short term relief for someone else to care for the Veteran while you take a break.
    To enroll or find out which programs your senior qualifies for, find a Caregiver Support Coordinator in your area.

    Be sure to check the VA Caregiver Support Hotline for updates or subscribe to receive email updates and information about VA Caregiver Support Program services.

    The VA Caregiver Services may help you love your senior well!