In-Home Care Program

I wonder if the older adult you are caring for qualifies for this federal and state funded program?

PACE enables certain home-dwelling elderly individuals to remain in the community rather than receive care in a nursing home.

PACE stands for Program of All-Inclusive Care for the Elderly. It’s a partnership between a state’s social services and federally-funded Medicaid or Medicare. There are 272 PACE centers in 30 states, serving approximately 55,000 participants. PACE organizations provide care and services in the home, the community, and the PACE center. Medicare and Medicaid funds are used to cover all medically-necessary care and services provided by PACE. While each PACE program follows specified guidelines, each center is independently run so services may vary.

If your older adult qualifies for this program, it could be a game changer! Following is a fast-track checklist to determine if PACE is an option for the older adult in your life.

family caregiver making notes

Does the older adult meet the following criteria?

✅ Is 55 years old or older

✅ Is a full-time resident in the service area of a PACE organization (This includes these states: Alabama, Arkansas, California, Colorado, Delaware, Florida, Indiana, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Ohio, Oklahoma, Oregon, Nebraska, New Mexico, New York, North Carolina, North Dakota, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Virginia, Washington, Wisconsin, Wyoming.)

✅ Lives within the geographic area covered by a PACE center in their state. This map shows the specific PACE locations in each state. Also, because new programs are being added, check the map to see the most current national coverage information.

✅ Can be certified by the state in which they live as meeting the need for nursing home level care

✅ Is able to live safely in the community with the help of PACE services

✅ Qualifies for Medicaid. PACE centers may be able to help you fill out Medicaid paperwork and check to see if you qualify. (You can access PACE by paying privately. The private pay amount is usually on par with the cost of a nursing home, but the participant would still have the cost of their own living situation so paying privately for PACE doesn’t really make financial sense, that’s why 90-95% of PACE participants qualify for Medicaid.)

If an older adult qualifies based on the criteria above, PACE can provide:

  • Adult day primary care (including doctor and recreational therapy nursing services)
  • Dentistry
  • Emergency services
  • Home care
  • Hospital care
  • Laboratory/x-ray services
  • Meals
  • Medical specialty services
  • Nursing home care
  • Nutritional counseling
  • Occupational Therapy
  • Physical therapy
  • Prescription drugs
  • Preventive care
  • Social services, including caregiver training, support groups, and respite care
  • Social work counseling
  • Transportation to the PACE center for activities or medical appointments, if medically necessary. You may also be able to get transportation to some medical appointments in the community.

This brief video gives a glimpse of life at a PACE program.

Pay special attention to these other key points about the PACE program:

  • When enrolled in PACE, participants must receive Medicare and Medicaid benefits solely through the PACE organization. This means that you may have to change doctors and use the providers at your PACE center. 
  • PACE assumes total financial risk and pays for ALL health care services. This means that if the participant is hospitalized or needs surgery and rehab, all that cost is covered when arranged by PACE.
  • The interdisciplinary care team at PACE works with the participants and their caregivers to create a plan of care, meaning the participant and caregiver have a voice in the care plan. Also, because providers usually care for a small number of people, they get to know their patients and care is less fragmented.
  • Financing for the program is capped, which allows providers to deliver all services participants need rather than only those reimbursable under Medicare and Medicaid fee-for-service plans. For example, Medicare will only pay for a certain amount of physical therapy, but PACE doesn’t have that limitation.
  • PACE organizations are required to provide enrollees with all medically necessary services, including drugs, without any limitation or condition as to the amount, duration, or scope.  
  • Medical equipment can be requested and provided through PACE.
  • PACE provides all the care and services covered by Medicare and Medicaid when/if authorized by the PACE health care team. If the health care team decides you need care and services that Medicare and Medicaid doesn’t cover, PACE may still cover them.
  • If you need help completing a Medicaid application to enroll in PACE, your local PACE center can help you with that process.
  • Participants can disenroll at any time and resume their Medicaid and Medicare programs.

If an older adult meets the criteria for PACE and has access to one in their area, it could allow an older adult to age in their own home. That’s a dream come true for many! If you are ready to dive even deeper into PACE, we can evaluate it and other paying for care options with our stress-free Paying for Care service.

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.

Her mom moved in.

Carmen Abela-Burns imagined that living together with her mom would enable them to spend good quality time together taking walks and having lunch. As her mother’s dementia progressed, it unfortunately looked a little different. She was a caregiver to both her mother and step-father for many years. As a thoughtful veteran caregiver, she shared with Ways & Wane the key advice she would give to other caregivers. 

“We want our lives back—and anyone who says they don’t is lying—and yet we don’t want to let our loved one go,” says Carmen.

“We are programmed to care for people to live. We are not programmed to care for people to die. . .  Your role as a caregiver is to care for them in the most loving, compassionate way possible so that they can go, having felt that.”

How do you continue that compassionate care?

Carmen’s message is one of “get support”. That aspect is key to the mission here at Ways & Wane since we also strongly believe that no one should be a caregiver without support from a variety of sources. 

As caregivers who are constantly pouring out, being able to fill your own pitcher through a support network, education and self-care, is the only way to continue to pour out to others. 

You may also like: Her Mom’s Surgery Became a Caregiving Trial Run.

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.

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.

Sibling Relations

One sibling usually takes the lead. How can others get involved?

caregiver woman worried

Sibling relationships as they relate to care for aging parents—t’s pretty much the perfect storm of potential conflict. A dynamic that taps into long-term emotional wounds, inheritance concerns and parental/sibling life memories going back many years. In the midst of the conflict, especially if you feel like you’re the one holding all of the responsibilities, where can solutions and practical coping strategies be found?  

 

Let’s begin by looking at three reasons why siblings may avoid helping with caregiving:

  1. They don’t think/see that there’s a need

  2. They don’t see how they can help

  3. They are afraid of doing a “bad job” or messing up

 

So let’s break these down into strategic responses…

 

They don’t see a need. How about…

  • Send a calendar invite for specific times they can fill in.

  • Set up a regular whole family meeting (including spouses) to review the situation. Then make a date for the next whole family meeting.

  • Start a family message thread or a private family Facebook group providing regular updates and encouraging dialogue.

  • Create a shared google document outlining updates, questions and challenges.

  • Use a website like Caring Bridge or Lotsa Helping Hands to outline needs

 

They don’t see how they can help. How about asking them to do something specific, like…

  • Take over bill paying, banking and/or tax management.

  • Cover the cost of a bi-monthly housekeeper or helper. (One family I know had all the kids and grandkids pitch in for a year of housecleaning for their great grandma.)

  • Have a meal delivered every week (or every so often).

  • Gift a membership (massage, yoga, etc.) for the family member who does most of the care.

  • Research solutions to various needs, e.g. find a used wheelchair, the best shower chair, etc.

 

They might be afraid of doing a “bad job” or messing up. How about encouraging based on these perspectives…

  • Accept siblings for who they are and expect different approaches.

  • Try to respect other’s perceptions and find opportunities to compromise.

  • “Decide to believe that everyone is truly doing the best that they can. We’re all a little bit right and a little bit wrong.” – Life Coach Mary Remmes

  • Assume positive intent.

 

At the end of the day, we can only control how WE respond. Caregiving isn’t easy, so extra grace is hugely helpful—all around.

May you find joy in loving one another well and assuming the best

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 work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.

Marriages Affected by Caregiving

couple laughing

Don’t let caregiving kill your marriage

No one needs to tell you that caregiving can be all encompassing, but if you are giving 100% of yourself to caregiving for your senior then what is left for your self-care? 

And, if you aren’t practicing self-care, it also means there isn’t care for your partner either. 

No one wins if you let caregiving cost you your relationship with your partner.

My dad was known to say, “It’s hard to remember that you set out to clean the swamp when you are knee deep in alligator sh#!” In the thick of it, it can be hard to see a way out. Implement these 5 practical ideas, beginning with self-care for you, the caregiver:

  1. Take 15 minutes just for you every day.

University professor and researcher, Francis Lewis suggests that caregivers spend (at least) 15 minutes alone everyday doing something for themselves. Doing so “creates a place for your peace and your joy”. Lewis says, “It might be shooting hoops, it might be calling up friends, it might be having a cup of tea, it may be walking around the neighborhood.” Whatever it is, treat yourself “like company.” Recharge your spirit with a time of meditation or prayer.  

2. Include your partner in caregiving decisions.

You may think that decisions only impact you since you’re the caregiver, but it’s likely that your partner is very much impacted by them too. Include them in decisions and ask for their practical help and if they say “no” respect that. You need your “no” respected too.

3. Be purposeful about scheduling regular time with your partner.

Once you’ve scheduled time, honor that time by showing up and being fully present, giving your  partner more than just your “leftovers”. Let it be a balanced time of listening and sharing, away from your caregiving role. 

4. Show appreciation to your partner. Regularly and sincerely.

Your senior may not be expressing their appreciation to you or for you which may make you feel like hoarding your appreciation words, as though you can keep them for yourself. Be generous about expressing gratitude for your partner, to your partner. Let them catch you praising them in front of others.

5. Connect with a caregiving community.

Investing time in a supportive community group that understands the day to day challenges of caregiving is invaluable. An outlet for your own caregiver feelings and challenges provides you support without your partner having to hold the full weight of that need. Search for eldercare or caregiving groups on Facebook or Reddit.  

Are you unable to see how to care for yourself? Are you experiencing the following challenges?

  • Ignoring own health problems 
  • Not eating a healthy diet for lack of time 
  • Overusing tobacco and alcohol when stressed 
  • Feeling resentful toward the older adult in your care 
  • Holding in feelings of anger and frustration and then being surprised by outbursts directed at the care recipient, other family members, co-workers and strangers
  • Feeling sad, down, depressed or hopeless
    Listed by Denise E. Flori, PhD, LMFT
    If these are your struggles, seek professional help from a counselor.

May you find joy in loving one another really well!

New York Nursing Homes: Almost All Have Disease. What About Your State?

This one tool shows current data on COVID-19 cases for nursing homes.

nursing homes

When my dad needed a skilled nursing facility to rehab from a traumatic injury, my first call was to a few friends who had first-hand experience with local facilities. My second action was to visit in person. However, I should have started with the data. 

Data is even more important during COVID-19. While nursing home residents make up just 1.2 percent of the United States population, they account for about 40 percent of Covid-19 deaths, according to the New York Times.

This one tool can help inform your decision. Propublica, an independent nonprofit newsroom, offers an investigative tool to discover reported deficiencies, including COVID-19 cases, within nursing homes. 

Propublic excerpt:

Some of the homes have been cited for putting residents at “immediate jeopardy” of harm or death, our analysis showed.

And many of the affected homes have been previously written up for violating federal standards. That’s true in California, New Jersey and New York.

We introduced this resource in 2012 as a way to search through tens of thousands of nursing home inspection reports to find problems and trends.

You can easily compare the nursing homes in your state based on how many times they have been cited for violating infection control protocols in the past three inspection cycles (roughly three years). We’ve also added data from The Washington Post on homes with COVID-19 cases. 

The Nursing Home Inspect Tool shows this dashboard:

The dark red states show the highest rate of infectious disease rates in the nursing homes. Click on New York on the “Infection-Related Deficiencies” map and you get the report below, showing that 90% of all nursing homes in the state have had at least one case of COVID-19. 

*

ProPublica’s reporting tool also shows that some nursing home chains seem to have higher rates of cases, as well. New Jersey’s CareOne facility had a consistently higher percentage of cases than other chains in the state. 

nursing homes

Looking at these numbers may inspire us to consider more in-home care options—or at least to let data play a part in our decision.

 

How to Find Assisted Living After 100 Days in a Nursing Home?

Medicare stopped paying for my dad’s rehab care at the nursing home. 100 days had passed and he wasn’t “progressing enough with his physical therapy,” which meant Medicare wasn’t going to pay any longer. We needed to find a place for my dad who still needed a lot of care, nearly 24/7 mainly because of injury induced dementia combined with his invincible spirit… “I was just practicing walking without my walker.” 

If we were going to move my dad into an assisted living home I needed to know he’d not only be safe, but very well cared for and well, as happy as possible. How were we going to do that? 

In Washington state, the Department of Social and Health Services allowed me to search for living options based on zip code as well as for facilities that accept Medicaid. Once I had a list narrowed down, I could view the “Reports and Inspection Letters” which allowed me to see the facility’s history of Inspections, Investigations and Enforcement Actions. This information helped narrow my list. From there I called to check on availability and get a sense of who was running the home. If it seemed like a possibility, I scheduled a visit. Through this process I was able to find what ended up to be a good fit for our dad.

May you find joy in loving one another well! 

Elizabeth Dameron-Drew is a contributor to Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle, Washington with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, sewing, or vacuuming, or cooking while listening to the rain and thinking about her next creative endeavor. 

The ONE Local Secret to Finding In-Home Care

nursing home

Who wants to be in a nursing home or assisted living facility? My dad certainly didn’t. 

But I couldn’t quite figure out how to manage and afford the care that he would need at home. At the time, I couldn’t quit my job to provide that care myself. Maybe I should have. But that’s another story.

When searching online, it is hard to find an unbiased source. It turns out that it may have been more possible than I imagined to find home health care with the community resources already around me. Drumroll, please . . . this is the one unexpected source of local homecare referrals, even in these crazy times. 

Call your local hospital and nursing home social workers.

Ask them for homecare referrals—even if your senior is not in the facility currently. Sounds simple, right? But it’s a gem.

Social workers can provide the following facilities:

  • A referral for home health services like physical therapy (covered by Medicare for a limited time.)
  • A referral for a homemaker evaluation. The agency will send someone to your senior’s home to discuss services that are needed. After an authorized agency makes their free evaluation, your state may provide caregiving services at no cost. 
  • Their “preferred provider” list of caregivers (which you would pay for out-of-pocket.)

After narrowing your list, use Medicare’s checklist to interview each agency.
Their list includes questions like:

  • Do you have staff available at night and on weekends for emergencies?
  • Can you explain what my insurance will cover and what I must pay out-of-pocket?
  • Do you do background checks on all staff?

Also ask specifically about the sanitation and protection protocols they use during COVID-19.

Blessings as you help you senior well in these challenging times.

 

 

5 Warning Signs that Your Parent Needs Assisted Living

looking for spoiled food in the refrigeratorHe careened around the grocery store aisles driving the scooter they provided. I followed, picking up fallen cans and apologizing to shoppers who jumped out of his way.

My 80-year-old father was a home chef who was thrilled to put the dinner of his choice in his basket: ribs, asparagus and potatoes.

Sadly, those same ribs, asparagus and potatoes were molding in his fridge two weeks later.

Why didn’t he cook them? This really struck me because he loved to cook. Looking back, there were many reasons that all came down to . . . he just needed more help.

I think too, he was pretending that he was more capable than he truly was. We didn’t know that in the next year he would develop dementia and live in a hospital ICU, a nursing home, an assisted living memory care unit and a senior group home.

Look for these warning signs in our own senior’s home. Your elderly mom or dad may need more help than they are letting on.

Environment

  • The yard or house is not maintained.

  • There’s nothing to eat in the house.

  • The fridge contains expired or spoiled food.

  • Potholders or pans contain burn marks or a burning stove is left unattended.

  • There are multiples of the same item–10 bottles of ketchup?

  • Your senior has traffic tickets or the car has dents.

  • The car’s warning lights are on–gas, oil, check engine.

Social

  • Your senior stops doing the things they used to enjoy.

  • Your senior is spending days without leaving the house.

  • Your senior would benefit from someone checking on them every day.

  • Your senior complains of feeling lonely or abandoned when you are away.

Financial

  • Piles of mail in various places.

  • Unopened personal mail.

  • Increased thank you messages from charities.

  • Letters from banks or creditors.

  • The mail is unopened or bills are unpaid.

Up Close

  • Your senior is unsteady, wobbly, dizzy or very weak.

  • Your senior is looking unkempt, skipping showers, forgetting to shave.

  • Your senior has gained or lost weight, potentially having difficulty with cooking or shopping.

  • Your senior refuses to take medications or seek medical treatment.

  • Their personality has changed, become irritable or quiet.

  • To do lists that never seem to get done.

  • The house is overly cluttered.

  • Your senior is recovering more slowly from injuries or surgeries.

Cognitive

  • Your senior misses appointments, gets lost, forgets important information.

  • Your senior has difficulty performing familiar tasks.

  • Your senior substitutes unusual words

  • Your senior forgets recently learned information.

  • Your senior puts items in illogical places.

  • Your senior loses initiative and becomes passive or lethargic.

  • Your senior has trouble following directions.

Is it time to have a gentle conversation with your mom or dad about assisted living or in-home care?

Find templates and comparison tools for that housing or in-home help with the Digital Social Worker tool. It is full of curated links and to help you compare in-home care, a nursing home or assisted living options.

If you want the Warning Signs Checklist from above, download it here.

Now may the Lord of peace himself give you peace at all times in every way as you help your senior in their waning phase of life.