Author: Debbie McDonald

Grants for respite care

noun
a brief interval of rest or relief.

Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Especially with some Adult Day Centers not yet open after the COVID restrictions were put in place, other sources of respite help may be hard to find. But there’s hope in securing respite help through specific grants.

Define your needs

AARP recommends starting by asking yourself a few questions: 

• What do you need? Three hours off, twice a week? Twenty-four hours away from the house? A regular day (or night) out with your spouse or friends? A combination of the above?

• What does your loved one need? Meals? Laundry? Light housekeeping? Personal care? Daily walks? Medical help? List every job, large and small.

• Who can pinch-hit? Cast a wide net. List family near and far, your friends and your loved one’s friends.

Three Respite Grant Options

Once you have your needs defined, pursue these three respite care resources:

Dementia Home Care Grant

HFC and Home Instead offer grants specifically for respite care if your older adult meets the following criteria:

  • Currently living at home with Alzheimer’s disease or related dementia.
  • Caregiver(s) facing financial and emotional hardships due to the unique challenges of Alzheimer’s or related Dementia.
  • Resides in the United States or Canada

Watch their video for suggestions on how to complete the grant application. They want to hear your specific story. The applications are reviewed bi-monthly and they say you will get a response within 60 days.

Respite Relief through the VA

There is a grant available through the Elizabeth Dole Foundation that “offers family caregivers of veterans access to no-cost, short-term relief with the help of CareLinx in-home care professionals.” They state that the in-home care professionals can provide companionship, light housekeeping, grocery shopping and meal preparation, transportation, mobility support/transferring, exercise, toileting, bathing, and dressing and grooming. Here’s a link to a Grant Q&A and a link to the application itself. 

Read more about VA support in this article: Veteran? Get Paid or Get Money for Caring

Eldercare Financial Assistance Locator 

This tool helps you find the programs for which you or your older adult are currently eligible as well as those programs for which you might become eligible as your situation changes. You answer a few questions and they narrow down what you qualify for with over 400 programs including federal, state, and local governments, the VA, non-profits and private organizations.

You may also be interested in this article: Respite Care Provided through Hospice for a Dementia Patient

With the processing time in mind, it’s probably best to begin a process right away, even before you are sure you need it. Support in your caregiving journey is not just good, it’s important and respite is not just good, it’s essential. 

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 this platform she’s probably creating books, doing research or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

A little help, please

ONE question that reduces “overwhelm” when caring for an older adult with dementia, Alzheimer’s or physical needs

You don’t need to do it all and you definitely don’t need to do it all by yourself. As a family caregiver, there are times when someone else cannot fill your shoes, but there are many tasks someone else can do.

Before you add a task to your to-do list, ask
“Do I have to be the one to do this?” 

Put support systems in place for yourself so that you can show up in the areas where no one can replace you.

No one can replace you in your tradition of getting a root beer float with your older adult from the drive through.

No one can replace your sweet reminiscing through a photo album. 

But someone can remove some of the other day-to-day tasks that fall on your shoulders. Now more than ever, remote and home support services are pretty widely available.  If you are worried about the expense, set a weekly amount that you would pay to be less stressed. Then hire a few tasks out.

What could that look like? 

5 Ways to Delegate

Here are 5 ideas where spending a little bit of money can provide essential support for you, the family caregiver.

  1. Laundry service. There are places that charge just $1 a pound to pick up your laundry from a bag on your porch, wash it, fold it and return it to your porch. (Think cloth diaper service, but better.)
  2. Ready-to-prepare meals. Amazon Fresh used to charge extra for their grocery delivery, but now it’s included in a Prime membership and is free when you meet the minimum purchase amount. They have fresh, ready-to-prepare meals that even a non-cook can pull together like Kung Pao Chicken, No-Prep Kit for 2 for about $14. (It was yummy.)
  3. Hire self-care. There are companies like Zeel who have professional massage therapists who will come to your home. I tried it twice and to answer what you are wondering—it’s not creepy at all.
  4. Leverage your family, the neighborhood college kid or someone from your faith organization to do errands for you. Dropping off the package to UPS, returning the library book or picking up the Walgreens order for your older adult are all things you can ask someone else to help with. Or choose a company like TaskRabbit when you need a second set of hands or wheels to finish your to-do list. When you need an errand runner, book a Tasker to pick up prescriptions, make a trip to the post office, or complete any other one-off on your list. 
  5. Hire in-home help 10 hours a week. If you are concerned about finding good help and how to pay for it, look at our “How to Pay for Care” package. We’ll make sure you get all the benefits that you qualify for!

In a season that can be very intense, taking things off your plate so you can show up where you are not replaceable can make a huge difference to your level of stress and overall mental health. 

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 this platform she’s probably creating books, doing research or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

Paying for Dementia Care

We interviewed Kathryn Cherkas from the Alzheimer’s Association about paying for care. Here’s what she said:

“[For] the majority of people in America, affording care is a challenge. What the association can do as a whole is advise the best timeline for planning out finances.Our legal and financial planning course covers this and really demonstrates the importance of making these decisions early so that [it is] the person living with dementia’s decision, [so] their wishes are known and considered in all plans.

Our chapter here on the Central Coast does offer . . . “

[The Alzheimer’s Association course] demonstrates the importance of making these decisions early so that [it is] the person living with dementia’s decision.

Kathryn Cherkas, Alzheimer’s Association

Find more articles about paying for care:

Three Ways to Pay for Long-Term Care

This Company Benefit Could Save You Thousands

If they don’t know who you are, try this . . .

Free Respite Help

Dial 2-1-1 anytime of the day or night to get respite care resources (and other help) in your area

For example, a search on the 211 website:  www.211.org showed me resources near me, like the Jewish Family Service Caregiver Support Program which can offer respite help. I also found a link there that showed me 14 Adult Day Care options ranging from $0-65/day.
As a nonprofit funded by United Way and local governments, 2-1-1 made more than 12.8 million help connections in 2018. It’s free to have them help you.

Here are four reasons why you should call 2-1-1 for answers about local nursing homes, walker recommendations, senior transportation and in-home care.

  1. 2-1-1 referrals are free.
  2. 2-1-1 is government-funded, but it is not just for the poor. The operators can give you information about support groups, housing options and caregivers.
  3. 2-1-1 gives you names and numbers of local companies, nonprofits or agencies that will provide the services your senior needs. 
  4. 2-1-1 is open 24/7 and available by phone (best) or chat at 211.org or by text. They report that 94.6% of the U.S. population can access a local 2-1-1 center. My call was answered quickly by phone, but not at all by text. 

Calling 2-1-1 would have given me a starting point to getting more help for my dad. Here’s a checklist of questions to ask 2-1-1 when you call, so you don’t forget anything.

Now may you have peace as you help an older adult 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.

This company benefit could save you thousands in caregiving expenses

Will your company pay for eldercare?

As you assist your elderly parent or in-law, you may not think about your employer as a resource. Instead you wonder if they are getting the most out of Medicare benefits and worry about their physical or cognitive decline. 

woman on phone looking worriedMany employers offer a benefit to support your caregiving efforts. In fact, a Bank of America survey found that while 88 percent of the surveyed employers offer some type of caregiving resources, 71 percent of workers are unaware of these offerings, and just 34 percent have taken advantage of them.

Caregiving in the spotlight

With the proposed American Family Plan offering paid family leave to care for an older adult and the outcry over women caregivers leaving the workplace, employers are in the hotseat to offer more caregiving benefits. If your company does offer eldercare benefits, they likely exist within one of five different areas. If they don’t, now is the time to politely ask your human resources contact to consider adding an eldercare benefit. 

A sibling or their partner can also qualify for an eldercare company benefit to provide assistance. Asking them to check into their company benefit can be a good way to get siblings involved.

Five places to look for it

An eldercare benefit may fall into several areas within a company:

  • Adult care
    Like a child daycare benefit, some employers cover backup in-home care or adult daycare.
  • Employee Assistance Program
    The EAP may provide eldercare navigation resources to help you find in-home care, pay for care, determine which legal documents you need and more.
  • Employee Resource Group
    Some large companies offer an Employee Resource Group (ERG) supporting employees caring for an older adult. Employees experiencing similar eldercare challenges may meet regularly to share resources and support.
  • Dependent Care Flexible Spending Account
    Using pre-tax dollars to private pay for eldercare expenses, can save you 20% or more depending on your tax bracket. According to the Society of Human Resource Management, “While the benefit is most often used to pay for child day care, elder care also is eligible for reimbursement with a DCFSA if the adult lives with the account holder at least eight hours of the day and is claimed as a dependent on the account holder’s federal tax return.”
  • Family Leave
    Some companies offer a leave of absence that is paid, unpaid or a combination of the two so that you can attend to your loved one’s needs for an extended period of time. This can be especially useful during intense times of transition from hospital to rehab to another living situation. 

    Email your HR department

    Within larger companies, it can be difficult to find what benefits exist and how to access them. Copy and paste this message into an email and send to your human resources department:

    To Human Resources:
    Does our company offer any kind of eldercare benefit?
    Do we have an eldercare Employee Resource Group?
    What is our family leave policy as it relates to caring for an older adult?
    As I look forward, this benefit would be helpful.
    If we are considering a caregiver benefit, Ways & Wane solves eldercare challenges for busy professionals. I’d like to work with them. Will you reimburse employees for that expense?

    Your employer values your focused contributions; offering caregiver benefits allows you to do your best work and creates a high return on investment for your employer.

    Debbie McDonald is founder of the iCareToo movement and CEO of Ways & Wane, a benefit that solves eldercare challenges for busy professionals.

    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.

    Happy Brain in 15 Seconds

    Three Ways to Pay for Long-term Care

    Secret Cost-Saving  Strategies

    Long-term care is expensive, right?!
    We have three little-known tips to share.

    mom with dementia, daughter helping with paperwork

    211.org This free service is the most comprehensive source of locally curated social services information. Available 24/7–call, text or chat.
    State Health Insurance Program (SHIP)
    		 This nonprofit gives free advice about Medicare programs that could provide financial assistance. Call to schedule an appointment with someone from your state.
    Programs of All-inclusive Care for the Elderly (PACE)
    		 This is a Medicare and state-specific “shared care” program for those who qualify. (You don’t necessarily need to spend down assets like you would to qualify for Medicaid.) It is not available in every state.

    One support group participant was so excited that they qualified and will receive help through this program!

    May you find joy in discovering new strategies to pay for long-term care!

    Grieving the person they used to be

    Has dementia changed your relationship?

    Are you grieving? Or are you slowly losing someone to dementia? Interviewer Elizabeth Dameron-Drew of Ways & Wane talks to Emma Payne of Grief Coach, a texting service to support people who are grieving, and the friends and family who want to support them, but often just don’t know how.

    You may also be interested in this article on forgotten birthdays.

    May you find joy in loving one another well, even in the midst of your tears.