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person-centered care

5 Ways Person-Centered Care Improves Health & Happiness

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It really grinds Brian’s gears. I’m not kidding. Being labeled an Alzheimer’s “sufferer,” or “disabled,” or even somebody’s “patient” makes my life partner/care partner so angry. It’s easy to understand why. We prefer person-centered care and language because anything else automatically places the individual at a disadvantage.

A disadvantage? How?

Let’s say your mother lives with dementia. Her condition has worsened the last six months, so she agreed to mobilize part of her life-care plan to move to a memory care home in your community. “It’s for the best,” she says in one of her more lucid moments.

But you begin to hear some things you don’t like. The doctor on staff isn’t listening to her concerns about a certain medication. The nurses don’t call your mother by her first name, Beth, instead referring to her as “the Lewy-body dementia in 26A.” 

“The doctor still has her taking that medicine? It’s only making her worse,” you complain to the administrator. “And she’s not even being labeled as a person anymore? She’s Beth, and she’s a person first!” As Brian always always says, “I may have Alzheimer’s, but Alzheimer’s does not have me.” But person-centered care and language isn’t only for persons living with dementia. Any individual – whether living with a terminal illness or aging in good health – can have better health and happiness with some careful attention to how realities are discussed and care decisions made.

The Benefits of Person-Centered Care & Language

Person-centered care (also called person-focused or person-directed care) empowers the individual at the center of care. Health care systems for years had a top-down approach. There was a health professional in charge of decision-making in what was supposed to be a patient’s best interest. 

People only received care. People were caregivers. Our loved ones were defined by their diagnoses and medical needs. Intended or not, such thinking gave power over the individual in both word and deed.

Philosophies then began to change – for the better. Why shouldn’t a person direct their own care? (They know their bodies best, after all.) Why should someone be called a caregiver? (More accurately, they’re partnering in and assisting with a loved one’s care.) Words and care models matter, and our good friends at the Pioneer Network and Eden Alternative have led these culture-change efforts for decades. 

Here’s an easy breakdown of how person-focused care and language works.

1. Speaking the Language of Compassion

Words are our most powerful weapons. Their very presence can hurt or heal – your choice. Person-focused language is one of compassion. It prefers “care partner” to “caregiver,” “resident” to “patient,” “person with different abilities” to “disabled,” and so much more.

As you can see, it removes labels and focuses on the strengths individuals do have rather than weaknesses. To Brian’s point, he’s not a “sufferer of Alzheimer’s and vascular dementia.” He may struggle, but he’s not defined by that struggle. He’s Brian, and he’s defined by his life – everything he’s done, victories and defeats, love and loss, family and friends. Likewise, your loved one is entitled to care verbiage that honors their humanity and spirit. 

Even the places they receive care are subject to person-centered language. “Facility” is such a common term. But the Eden Alternative asks, “Why are we still dropping the F-bomb?” Wouldn’t you feel more happy, comfortable and ready to heal at “home”?

2. Giving the Individual a Voice

Medical professionals used to enter a room, make an analysis and render a treatment decision. It was to be followed to the letter. We get it, most medical professionals and teams have years – even decades – of schooling and experience. But what of the individual who lives in that body, knows how it feels and reacts, and the loved ones who also know them best? 

Person-centered care philosophies now understand individuals and their loved ones are the most under-utilized of all health resources. We now have a voice and a choice to help inform the care that’s delivered. If a certain medication or treatment doesn’t work or is too painful, that’s taken into consideration as something to avoid and not simply as a negative side effect.

Sometimes individuals prefer a care routine – a daily regimen of specified care and activities. Others enjoy more latitude to see what each day brings. And with some great life-care planning, person-centered care can give a voice even when the individual can no longer speak for themselves.

3. Involving Loved Ones

We mentioned family and other close loved ones. They know the individual best. They’ve seen the progression of the person’s natural aging or disease, first-hand, sometimes every day for many years. They’ve seen treatments fail or work perfectly. And when a loved one has lost the capacity to advocate for their own needs, family members and close friends are the only ones left to help make decisions.

But it’s not just about care decisions. (Helpful hint: hopefully your loved one has a living will or advance directive to honor wishes.) Sometimes improved health and happiness comes from just having loved ones involved on a regular basis. Seeing a beloved husband, wife, grandson or even favorite neighbor regularly quells feelings of loneliness, helplessness and boredom.

4. Seeking Alternative Approaches

Health care is now a realm of education, consultation and delivery. Person-centered care allows us to hear options and discuss which may be the right approach. When one door closes, it’s on health professionals to uncover alternatives that may be seen as safer and more effective. 

Advances in medical knowledge and technology have virtually eliminated one-size-fits-all care approaches. What works for one may not work for another. No one dictates care beyond the care recipient. 

5. Changing Perceptions

Culture and media have framed many of our perceptions of aging and illness. As you know, these realities are increasingly portrayed as “ugly,” “weak” and “undesirable.” Person-focused care and language counter those attitudes as utter nonsense. Beauty and strength are found in all ages and ability levels. No one’s “ugly” because they’re advancing in years. No one’s “weak” because they’re affected by an illness they didn’t choose.

And as an added bonus, these philosophies also improve health provider outlook. A positive outlook to daily care always leads to less job burnout, greater job satisfaction and lower turnover rates. 

Let’s Build a Plan for Person-Centered Care

Every person has intrinsic value, dignity and character. Person-focused care and language honors each of these – and more. 

Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning, including Board-certified Patient Advocacy, Medicaid Planning & Asset Protection, Referral Services and #WeAreDementiaStrong. We’re happy to guide the process in a caring and compassionate way.

life-care plan

Fire Drill! Is Your Life-Care Plan Ready for the Unexpected?

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I’m a professional life-care planner. I’ve been helping people and their loved ones plan for advancing age and terminal illnesses for decades. It’s critical to be prepared. Just a few short weeks ago, our own plan fell apart.

It certainly wasn’t for a lack of trying or expertise. By all accounts, the life-care plan Brian (my life partner/care partner) and I have built together was rock solid. It factors all eventualities from finances to his dementia-related needs to both of our final wishes.

But I was deathly ill with pneumonia. Brian needed help that could not be found. I’d hate to consider the worst-case scenario. What horrors could befall us with me dead or incapacitated in the hospital and the love of my life on his own for God knows how long?

It happened to us — professionals who make a living by building life-care plans and related disciplines. It could happen to you. So this got me thinking. You must fire drill your plan.

Your Life-Care Plan Shouldn’t Be Left to Chance. Test It Out!

Yours or your loved one’s plan could be simple or dramatically complex. You or your loved one may be in good health, with only very basic measures to ensure financial affairs are in order and end-of-life care is prepared. Or you may anticipate poor health and many logistical layers needed to deliver appropriate care (for everyone involved).

In either case, and anything in between, let’s test out the life-care plan.

Care-Partner Support & Responsibilities

This part sticks out, first and foremost, because it was what caused the most uncertainty and fear. I was ill. Brian lives with Alzheimer’s disease and vascular dementia. A brief hospital stay likely wouldn’t be an issue. He’s cognizant enough to care for himself and set reminders to complete daily tasks on foggy days. But a lengthy stay … he would need some assistance.

Which is where other members of the care-partner team come in to save the day, right? Yes, in theory. But in our case, through no fault of their own, family and friends were out of town or unavailable. This is especially common during the holidays, when both primary and secondary care partners may be understandably busy with other trips and engagements. 

These responsibilities don’t involve only those who will be called upon to “sit” for a loved one or dependent. Care-partner support may cover any need (again, for everyone involved). For example:

  • A neighbor may agree to provide transportation to doctor appointments, in a pinch.
  • An adult child may help with bathing, cooking and cleaning.
  • A spouse may organize daily prescriptions and other medical recommendations.
  • A sibling may help with yard work and other household chores during prolonged facility stays.
  • A cousin with financial expertise may be entrusted to pay bills when you or a loved one are unavailable/incapacitated.
  • A grandchild may stop by for visits (wellness checks) when you’re away from home.

No role is too big or too small. Each person on the care-partner team has something important to do. But let’s test for hiccups and other surprises.

How to Test the Plan

As I said before, it was no one’s fault that they weren’t available in our recent crisis. We had family members, other loved ones and friends in other states. Some wouldn’t be able to help due to Covid. How were they to know amidst their busy lives and other primary responsibilities? It was “the perfect storm.”

So how do you test your plan? Game a scenario. Don’t tell them it’s a fire drill until afterward. 

Without causing alarm, call a primary care partner with a task. “I’m heading out of town for an emergency meeting. Could you please come help out with Mom?”

Call another supporting care partner. “Hey, are you available to help Dad with the yardwork this weekend? We’ll be away getting some tests.” Or perhaps, “Could you please help with bathing and getting Greg to bed tonight? Work called, and I won’t be able to.” 

Are the people you’re counting on available when needed? How quickly could they get there? Would there be a wait until they arrive? If so, is it manageable? Were their reasons valid? Did they answer at all?

You could even gather the entire care-partner team for a military-style drill in which everyone acts out an emergency scenario. Pretend your loved one had a significant emergency and the team must take action:

Running through the plan — even if it’s just verbally — reaffirms responsibilities for each person involved. Like anything in life, practice makes perfect.

How to Adjust the Plan

It should be immediately clear who’s willing and available in a pinch. It should be known who’s ready and capable to accept certain responsibilities. But, most importantly, fire drilling the life-care plan may identify uncertainties that can be easily fixed with alternatives. Essentially, “If Aunt Betty isn’t available, who’s the next best option?” And, “If the next best option isn’t available, then who next?” 

Sometimes the best choice may not even be family, friends or neighbors. You may have to include community agencies in the contingency plans. Resources like home care, adult daycare, respite care and assisted living can provide guidance, structure and lodging, when needed. Of course, not everyone could afford hourly rates for certain services or would be eligible for Medicaid to cover them.

You may even run across a situation in which your loved one refuses care or assistance in an emergency. If it’s a matter of life and death — as our situation was — sometimes the best a care partner can do is call adult protective services. 

Testing Your Life-Care Plan Gives Peace of Mind

Although I was very sick, I’m GLAD the plan fell through. It was very eye-opening and allowed me to factor uncertain scenarios for the future.

As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my Brian. If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

Patient Advocacy

Patient Advocacy: Your One-Stop Shop for a Life Worth Living

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As your loved one ages or progresses through a terminal illness, the number of professionals and agencies involved in their care will only increase. Patient advocacy is your one-stop shop for EVERYTHING your loved one and their care partners will need.

You’ll have doctor appointments — sometimes many of them spanning a range of health disciplines. You’ll have coordination along the continuum of care — from the home and in the community to potential long-term care options. You’ll have financial and legal considerations. And, all the while, you’ll require continuing education into health conditions, care options and quality-of-life factors.

After all, each of us deserves a life worth living, right? Here’s how a Board-certified Patient Advocate can help.

Board-Certified Patient Advocacy in the Tampa Bay Area

A Patient Advocate helps to navigate complex health care systems, financial realities and resources for senior care, people at end of life, and those who simply wish to prepare for life’s latter stages.

Care-Partner Team Building

We steer clear of the term caregiver. While accurate in some cases, person-centered language prefers the term care partner. Why? Because it empowers the individual at the center of care. They’re not just care recipients. They’re people — with special needs and desires for a life well lived and thoroughly enjoyed. In many cases, they may direct their own care for many years into advancing age or a terminal diagnosis. And with a great life-care plan, they may make preparations and continue to direct their own care when they’re no longer able to make decisions.

Where do we start? Let’s consider ALL of the individuals who may serve a role in assisting care. It’s a team effort, when possible, and this team may include loved ones, friends, neighbors and professionals with important roles in the home (family visits, cooking, cleaning, etc.) to transportation (to and from medical appointments) to respite care, assisted living or long-term nursing care (transitions and ongoing support).

A life-care plan is a working document that can always change as needs evolve. It provides accurate and timely information that addresses all aspects of care from physical therapy, doctor visits and crisis intervention to financial responsibilities, dietary needs and community living.    

Medical Care Coordination

Patient advocacy helps clients understand all treatment options, whether they’re terminal illnesses like dementia and cancer or simpler needs that follow the healthy aging process. Treatment options are just that: options. Sometimes seeking second (and even third) opinions yields the best possible care. We empower care-partner teams to ask tough questions of the right professionals involved in all aspects of care.

Some individuals see a network of doctors, clinicians, specialists and other providers to address specific needs. Complexity and confusion are common. We work alongside clients to secure care options in any setting. We will even coordinate and attend medical appointments, if appropriate. We also help care-partner teams to organize important health care, financial and legal documents (like a living will or power of attorney), as well as prescriptions and recommendations by health professionals.

Medicaid & VA Planning

A semi-private nursing home room costs on average $9,946 per month here in the Tampa, FL area. Folks can save their entire lives and think that they’ll have adequate funds for “that rainy day” only to suffer a stroke, major heart attack, or receive a terminal diagnosis. Almost overnight, they no longer have the means to afford critical health care needs. This expense would cause most people to enter financial hardship.

In order to receive Medicaid and VA benefits, individuals must first be financially eligible. A Board-certified Patient Advocate, like myself, helps clients to understand financial eligibility ins and outs to protect assets for now and the future. Medicaid, unlike Medicare, will cover all long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will be eligible for the rest of their lives.

Life Transitions

Almost everyone prefers to age comfortably at home. Sometimes that’s possible. But conditions and diagnoses come that, at times, compel transitions to a more optimal, healthy and safe living space. Moving to an assisted-living facility, nursing home or hospice end-of-life care is difficult for everyone involved.

An experienced Patient Advocate assists care-partner teams with the logistics and red tape associated with moving. In addition to financial eligibility requirements, elders and their care partners must navigate issues associated with real estate transactions, asset management and continuity of care. 

Some moves are temporary. When a client is discharged to a rehab facility (or back home), we plan and coordinate resources for whatever that next step may be.

Education and Referrals

Whether you or a loved one are researching care and financial options for years in the future or immediately after an Alzheimer’s diagnosis, your Patient Advocate will always educate you about processes, responsibilities and treatment options. 

There’s so much to know. Yes, it will likely seem overwhelming. What can you do when a loved one no longer responds to treatment? How do you adjust when they wish to adjust their end-of-life plans or when circumstances change for Medicaid eligibility? When those questions (and others) arise, we will refer helpful resources from a network of partnering organizations.

Let’s Start Planning for Patient Advocacy Today

I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey.

Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.

Contact me at info@caregiversupportandresources.com to get started today.

Medicaid eligibility

Medicaid Eligibility: What is the Community Spouse Resource Allowance?

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Mom and Dad still live in their home. They’re advancing in age, to put it lightly, but luckily they’ve been otherwise healthy … until recently. Your mother’s health has taken a turn for the worse in the last year, and it’s clear the care required will soon be beyond the family’s capacity. Medicaid eligibility will cover long-term care at home or in a facility, regardless if she’s received a diagnosis of dementia, a terminal illness or if her health is merely slipping with age. 

Married couples with one healthy spouse not currently requiring coverage can still qualify for Medicaid under certain income and asset thresholds. But the Community Spouse Resource Allowance (CSRA) allows the non-applicant spouse to retain enough resources to live comfortably.

Understanding Florida Medicaid Eligibility Rules for Spouses

So what’s with all these terms? What in the heck is a “community spouse?” Sounds icky, like having to share your beloved husband or wife. Relax. It’s just the term for the non-applicant spouse, who remains in the community — aka the “healthy” or “well” spouse. The term “institutionalized spouse” is a bit of a misnomer because this spouse — the applicant — may never be “institutionalized” at all and may, in fact, receive benefits covering both home and community care options. “Resources” are most often referred to simply as assets. (Don’t mind me rolling my eyes at the needless silliness and confusion associated with this otherwise helpful program.) 

Medicaid helps individuals and families with limited means to afford astronomical long-term care costs. But first it ensures those with sufficient assets and/or income haven’t artificially deflated their net worth to achieve eligibility for assistance. While income and assets above limits must be spent down or distributed legally and ethically, Medicaid in most states does allow families to keep “resources” for living expenses.

The Community Spouse Resource Allowance is one of those measures.

So What Does the CSRA Do?

Medicaid understands its role serving individuals and families with little income and assets. They always verify those served actually meet those qualifications through financial/asset disclosures and a very thorough 5-year lookback process. But they won’t leave a non-applicant spouse (“community spouse”) with little to no money to live independently.

The Community Spouse Resource Allowance (CSRA) allows the non-applicant to retain assets up to a certain amount. Here in beautiful Florida — a 100% state — that maximum figure in 2021 was $130,380. The applicant spouse could keep $2,000. 

The federal program is administered by the states, ultimately leaving maximum and minimum income and asset limits for Medicaid eligibility up to the states’ discretion. In 100% states like ours, non-applicant spouses are entitled to all of their joint assets up to the maximum resource allowance.

Some examples specific to Florida: 

  • The married couple has $350,000 in assets. The non-applicant (“community spouse”) may retain $130,380 of that sum. The applicant may retain $2,000, leaving $217,620 that must be spent down or given to family, friends and/or trustees.
  • The married couple has $97,000 in assets. The non-applicant may retain the entirety of that sum, as it is under Florida’s maximum CSRA.

Spending down or distributing any remaining assets, if necessary, should be done before the Medicaid 5-year lookback to avoid an ineligibility penalty period.

Do All Assets Count?

No. The Medicaid-eligibility process and its Community Spouse Resource Allowance lump assets into countable (non-exempt) assets and non-countable (exempt) assets. 

Countable assets include items with easily calculated monetary value with no daily-living or sentimental worth:

  • Cash
  • Stocks, bonds and other investment portfolio elements
  • Non-residential properties

Non-countable assets include items that would have value for daily living or sentimentality:

  • Primary residential property, including furniture and appliances (if the non-applicant spouse lives there)
  • A primary-use vehicle
  • Clothing
  • Irrevocable funeral and burial trusts
  • Life insurance policies (typically up to $1,500 in value)

It’s easily understood when you breakdown the nature of each type of asset and its importance to daily life.

Is There a Spouse Monthly Income Limit?

Yes. The Minimum Monthly Maintenance Needs Allowance (MMMNA) for Long-Term Care Medicaid allows non-applicant spouses with little (or no) steady income to take some (or all) of the applicant spouse’s income for living expenses. Here in Florida (and 47 other states) the MMMNA in 2021 was $2,177.50 per month. The maximum in 2021 was approximately $3,260 per month.

The MMMNA essentially ensures that the non-applicant has enough regular income to survive, if they don’t make enough on their own. It, too, is based on an easily understood formula in alignment with the Federal Poverty Level. Some examples:

  • A retired, non-applicant husband has a monthly income of just $1,750 via Social Security. Based on 2021 figures, he was eligible to transfer the difference — $427.50 — of the applicant spouse’s monthly income.
  • A working, non-applicant wife has a monthly income of $2,200 between part-time employment and Social Security. She was over the minimum and ineligible to transfer income.

What Happens When Both Spouses Apply?

Medicaid eligibility gets a lot easier when both spouses apply. Both spouses need long-term care, therefore both must have income and assets at or below limits. The CSRA and MMMNA go away, as they are no longer needed.

Care for both Institutional/Nursing Home Medicaid and Home and Community-Based Services Medicaid cap joint assets at $3,000 and combined income at $4,764 per month (or $2,382 per spouse).

We Can Help with Your Medicaid Eligibility & Asset Protection in Florida

Caregiver Support & Resources, LLC works with elder-law attorneys, and we can legally and ethically protect people’s assets to help them qualify for Medicaid and VA attendance. 

Medicaid, unlike Medicare, will cover most long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will have eligibility for the rest of their lives. Likewise for VA aid and attendance.

There’s no reason an elder or their spouse should live in poverty for transitioning to higher levels of care. Our clients, their families and future generations may still live in comfort and dignity.

(Editor’s Note: Caregiver Support and Resources, LLC is not a law office. Maureen Rulison is not an attorney. The information contained in this blog is not to be construed as legal counsel or advice or substituted as such in any U.S. state, territory, locale or foreign state where it can be accessed. Rather, this blog is meant only to educate elders, care partners and families as to legal processes around life care planning.)

Medicaid 5-year lookback

Are There Exceptions to the Medicaid 5-Year Lookback Period?

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We’ve been talking a lot recently about Medicaid-eligibility rules. They can be confusing, we know. One of the most critical pieces to understand, for anyone approaching Long-Term Care Medicaid, is its 5-year lookback period examining financial eligibility. They look at everything, and it certainly can seem overwhelming. But there are exceptions.

Medicaid is a government program, so naturally you can expect a mile of paperwork informed by miles more of red tape, financial disclosures dating back years and laws that make no sense at times. (Spoiler alert: that’s why we suggest hiring a professional to guide the process.)

That paper trail tells a story. Your story. And if you need to achieve eligibility for Long-Term Care  Medicaid, it’s critical you get it right. At its core, eligibility is financial. You can’t have significant income and assets — or the state will declare you have the resources to pay for care yourself. A step further, Medicaid ensures you and your family have not artificially deflated your fiscal status within the last five years to become eligible.

But the system allows a few exceptions: meaningful expenditures, gifts, exchanges and transactions within the 5-year lookback. 

3 Exceptions to the Medicaid 5-Year Lookback

Medicaid understands aging parents, grandparents and other loved ones would distribute wealth and assets in their Golden Years that they can’t use in death. Make no mistake, we would always advise planning early to ethically and responsibly spend down/distribute assets and property. 

But there are exceptions. Some might call them loopholes. But they’re legally there for a reason, and great estate planning and life-care planning should factor these realities.

1. Married Couples with One Spouse Applying

Quite often, only one spouse applies for Medicaid. One may be in good health while the other must prepare for extra home-care services, adult day care/respite care, assisted living or full-time nursing care. The Community Spouse Resource Allowance (CSRA) allows the non-applicant spouse to retain much of the couple’s jointly owned assets.

Here in Florida, there is no penalty for interspousal transfers. The CSRA allows the non-applicant (known as a “community spouse”) to keep up to $130,380, while the applicant spouse may keep only $2,000. The thinking, easily enough, is that allowing such asset transfers (including non-residential property, stock portfolios and other investments, and cash savings) to a spouse will protect the applicant’s spouse and other dependent loved ones from having too little to cover living expenses.  

So let’s break down some hypotheticals:

  • If the couple together has $180,000 in net assets, the non-applicant spouse can keep $130,380 and the applicant may retain $2,000. The remaining $47,620 must be spent down or distributed within the rules.
  • If the applicant spouse has $360,000 in cash savings alone, (s)he can transfer only $130,380 to the non-applicant and retain $2,000 within the 5-year lookback. 
  • If the couple has just $80,000 in net assets, the non-applicant spouse may retain all $80,000.

If any funds remain to be spent down within the Medicaid lookback period to reach eligibility, they may be used on eligible long-term care costs, no matter where care occurs. For instance, it may cover in-home care delivered by a medical professional or even a spouse, relative or close friend.

2. Home Transfer

A Medicaid applicant may transfer a home to:

  • A legal spouse
  • Children under 21 years old
  • A blind and/or permanently disabled adult child
  • A sibling of the homeowner who has resided in the home for at least a year before the Medicaid applicant transitioned to a long-term care facility
  • An adult child of the applicant who has lived in the home for at least two years as a caregiver/care partner before the Medicaid applicant transitioned to a long-term care facility. (The provided care stipulation is key, as it must be reasonably proven that the son or daughter providing such care delayed the applicant need for formal long-term care.)

In each case, the property recipient would require proof of the status that would make them eligible to receive it.

3. Assets Distributed to Minor Children

Long-Term Care Medicaid applicants may have a minor child or children (under 21 years old) who live with a range of disabilities. These children would be eligible to receive asset transfers of any scale during the 5-year lookback period to benefit their own well-being. Common tactics include establishing trusts to temporarily transfer ownership of funds and assets until the beneficiaries reach adulthood.

Preparing for Medicaid in the Life Care Planning Process

Of course, the best bet is to have all financial planning and legal issues sorted out well before the lookback, if possible. The exceptions to this important eligibility rule do, however, account for unexpected illnesses and variables that should allow for transactions at any time. 

We can’t stress this enough: you need a professional to help to build a solid plan. Caregiver Support & Resources, LLC works with elder-law attorneys, and we can legally and ethically protect people’s assets to help them qualify for Medicaid and VA attendance. 

Medicaid, unlike Medicare, will cover most long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will have eligibility for the rest of their lives. Likewise for VA aid and attendance.

There’s no reason an elder or their spouse should live in poverty for transitioning to higher levels of care. Our clients, their families and future generations may still live in comfort and dignity.


(Editor’s Note: Caregiver Support and Resources, LLC is not a law office. Maureen Rulison is not an attorney. The information contained in this blog is not to be construed as legal counsel or advice or substituted as such in any U.S. state, territory, locale or foreign state where it can be accessed. Rather, this blog is meant only to educate elders, care partners and families as to legal processes around life care planning.)

hospice care

Hospice Care: When is the Time Right?

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It’s close to the end. You know it. Your family knows it. The doctor and medical staff know it. (“Close to the end” is a strange combination of perspective and reality. And “knowing it” is an exercise in faith and reality.) When is the time right for hospice care?

Most hospice agencies say families and care-partner teams often  wait too long to make late-life and end-of-life decisions. Some even wait until the final weeks, or even days, to make the call for hospice care. In these cases, preventable pain and suffering have long since set in. 

So when is the right time for hospice care? If you’re building a life-care plan — even if you and your loved one still expect many more healthy years — the answer is NOW. 

Preparing for Hospice Care is Key to a Well-Made Life Care Plan

We know. The decision-making process is far from easy. But hospice care needs to be seen as a resource, not a devastating conclusion. Hospice care provides comfort care and coordinates other important support services for both the individual and their loved ones at end of life. 

To be eligible, a doctor must affirm the individual’s condition will likely result in death within six months. The physical realities will be quite obvious. It’s time to mobilize hospice and all of its comfort, support and resources when an individual is experiencing one or more of the following:

  • Increasing falls
  • Severely declining cognition and memory (dressing, eating, walking, toileting, etc.)
  • Increasing visits to urgent care, ER and hospital stays
  • Deteriorating physical condition (skin tears, open sores, infections, etc.)
  • Significant weight loss

A good plan factors these end-of-life realities and doesn’t delay action when they arise.

Increasing Falls

Numerous objects around a household could cause a trip and fall: electrical cords, dimly lit spaces, bunched-up rugs, grandchildren’s toys, damp floors, the list goes on. But what happens when misplaced objects and untidy rooms are no longer the greatest threat to navigating a home? 

Weakness in muscle and bones as well as poor vision and balance associated with advancing age and illness are dangerous obstacles in themselves. Your loved one may get around the home for many years with limited assistance. But when they’re too weak and disoriented to move safely from the bed to a chair, it may be time to consider hospice care or another type of additional support.

Declining Cognition, Memory & Function

Again, this may occur on a sliding scale. Declining cognition and memory, often occurring with Alzheimer’s and other types of dementia, may seem relatively harmless at first. But there will come a time when your loved one won’t remember the reason for a trip to the kitchen or how to safely operate hazardous appliances and utensils once there. There will be a time when simply functioning — eating, toileting, bathing, etc. without help — is impossible. 

When that day comes, hospice agencies can coordinate support to help families avoid and respond to emergencies and accidents.

Increasing Visits to the ER and Hospital

Trips to the emergency room and hospital stays for stabilizing or life-saving care may happen once or even several times. Chronic cardiopulmonary conditions, for instance, may bring an individual to the brink of death only to be revived with breathing treatments and sent home within hours. It’s when these trips become too frequent that families must consider bringing care directly to the individual. 

Numerous hospital visits for emergency care are taxing on your loved one, who must not only endure poor health but also ambulance transport and the hectic rigors of lifesaving treatment — wondering which episode may be their last. They’re heart-wrenching to families who also suffer and anticipate grief alongside their loved one. Furthermore, they burden emergency transport and care systems who must respond to the same address time and again.

Hospice agencies will provide expert medical staff, medications, supplies and other resources for use at home. A hospice nurse, family and other loved ones may administer emergency care in comfort, without unnecessary transport or intervention.

Deteriorating Physical Condition

In most cases, end of life comes with pain, illness and general discomfort. Body systems gradually shut down — including the immune system and natural healing processes. Minor cuts and scrapes worsen to skin tears and open sores, often deep, painful and infected. These may be bed sores caused by the pressure of lying or sitting in one position.

When pain and suffering of this scale occurs because one is no longer capable of moving on their own, it’s likely time to involve hospice care. Hospice professionals will treat active wounds and ensure your loved one is moved frequently to avoid additional pressure sores.

Significant Weight Loss

Your loved one likely will lose appetite in the end, followed by what appears to be rapid and unhealthy weight loss. While poor appetite and weight loss could accompany a terminal illness like cancer or organ failure, it also could simply signal the natural shutdown of life processes.

Yes, it may be painful for you, as a loving and devoted care partner, to witness your loved one shutting down. But if your loved one no longer requires food to sustain bodily functions, well, they no longer need it. Hospice agencies administering end-of-life care recognize the importance of letting nature take its course — and will help you to make peace with that decision.

Plan for Hospice Care … Before Crisis Hits

OK, so pretty much everyone aims for their loved one to be home and independent as long as possible. That’s understandable. NO ONE wants to surrender control over their living situation to “the system.”

But hospice care isn’t a “system.” It’s a resource — covered by Medicare, Medicaid and major insurance plans — that can be planned many years in advance and delivered in home. It can be a valuable part of your community of support. The planning process considers many quality-of-life benefits including:

Even if your loved one is not currently eligible for hospice, alternative palliative care options can deliver many of the same comfort services, treatments, medications and resources, with no out-of-pocket cost, outside of the six-month window.

The care-partner team must face end-of-life care with a clear head and without bias. Planning ahead can save headache, heartache and uncertainty. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

Medicaid and VA planning

Protect Your Assets with Medicaid and VA Planning in Florida

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You and/or your loved one wish to grow old without financial worry. OK, right off the bat, let’s rephrase that. You and/or your loved one wish to cover any necessary medical needs without surrendering your hard-earned money and assets for yourselves and future generations. This is where Medicaid and VA Planning must be an essential part of any well-made life-care plan.

Wise choice. Whether you’re seeking such services here in Florida — or any other U.S. state or territory — the astronomical costs of health care can drain bank accounts more quickly than you imagine. 

How Much Could Nursing Home Care Cost Without Medicaid and VA Planning?

Did you know that Medicare and most other insurances don’t cover a stay in a Florida nursing home beyond 100 days? So costs could come out of pocket, from savings, or from property or other financial assets for a longer-term stay due to illness or even a moderate injury from an unexpected fall. 

So let’s have a look at some average long-term nursing facility costs, according to the Genworth Cost of Care Survey. In 2020, a semi-private nursing home room in Florida cost $8,669 PER MONTH! The United States average was $7,756 per month. Not that they were much cheaper, but our neighbors in Alabama and Georgia paid $6,540 and $6,722 monthly, respectively, for equivalent nursing home rooms, according to those most recent statistics.

But let’s analyze the numbers even more deeply, city by city and region by region. Here in the Tampa Bay, FL area, an average semi-private room in 2020 cost $9,946 per month. Meanwhile, a four-hour drive south in Miami, FL, it was $9,095 per month and far north on the Panhandle in Tallahassee, FL it was much less costly at $7,543. (Again, we say “much less costly” recognizing how outlandishly expensive a legitimate stay in a nursing facility can be.)

And make no mistake, if you haven’t the Medicaid or VA eligibility or an actual fortune in savings to cover the cost in cash, the health system has zero sympathy. THEY WILL TARGET ASSETS.

But Medicaid and VA Planning Isn’t Only for Nursing Care

Most are typically concerned about eligibility for long-term and end-of-life care mentioned above. But some more routine types of care and assistance typically covered earlier in life for healthier individuals can still be astronomically expensive. 

These might include:

  • Homemaker services
  • Adult day care/respite care
  • Home health care
  • Assisted living facilities

Let’s again break down some Florida averages (also dependent upon specific location). A home health aide in 2020 cost $4,290 monthly. Adult day care (some may know this as respite care, a type of community care common for persons living with dementia and others who can no longer safely stay home alone) cost $1,408 per month. Homemaker services and assisted-living facilities cost $4,195 and $3,700, respectively.

Again, they will target assets, if you are not prepared financially or eligible for Medicaid or VA benefits and attendance.

Navigating Eligibility for Medicaid and VA Planning in Florida

Good news is, many individuals and couples could be eligible for Medicaid or VA assistance to protect net worth and assets with some planning. It’s actually one of the most critical elements to life-care plans I build every day. Financial eligibility planning is just as important as figuring out final wishes for end-of-life care (like power of attorney, living wills, and hospice or palliative care) or preparing for everything else (the good and bad) that goes along with our loved ones’ golden years.

Medicaid and VA coverage is primarily a financial tool — fair or unfair — that first determines if an individual or couple is financially able to cover all or some of necessary health costs. Applying people and households must come in under certain income and asset limits. 

But in general, legal Florida residents (we’ll discuss citizenship and legal residency rules, as well) seeking long-term care Medicaid must meet income limits. For Floridians to be eligible for Medicaid, they must be a Florida resident, a U.S. citizen, a permanent resident or a legal alien and require a nursing home level of care. Applicants for Long-Term Care Medicaid must also meet the state’s income limits, which in 2021 is approximately $2,382 per month for a single household and an asset limit of $2,000.

Are You Financially Ready for a the Life-Care Planning Process?

Medicaid planning legally protects an individual’s assets to care for you and yours, in addition to Medicaid and VA benefits. Caregiver Support & Resources, LLC works with elder-law attorneys, and we can legally and ethically protect people’s assets to help them qualify for Medicaid and VA attendance.  Medicaid, unlike Medicare, will cover most long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will have eligibility for the rest of their lives. Likewise for VA aid and attendance.

There’s no reason an elder or their spouse should live in poverty for transitioning to higher levels of care. Our clients, their families and future generations may still live in comfort and dignity.

Alzheimer's and dementia

Common Alzheimer’s and Dementia Behaviors: Communication Difficulties

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You’re chatting with your husband and sister on the back patio on a beautiful summer evening. The wine tastes divine — even better with some stimulating conversation. Except, for some reason that escapes you right now, your husband is repeating himself and having difficulty finding the right words.

That’s new, you think to yourself as your sister catches your gaze, as she always does, to note you’re both on the same page. He’s commented on the wonderful weather a few times now. He’s recounted the same story about an office meeting at least twice. And he keeps stumbling over his boss’s name, often resorting to other ways to describe her.

It’s easy to shrug off these little lapses as a sign he’s just getting older. After all, common aging symptoms don’t always signify something more serious. But he’s typically pretty well-spoken, and these communication difficulties have arisen abruptly. He may be experiencing one of the most common early calling cards of Alzheimer’s and dementia.

How Does Communication Get More Difficult with Alzheimer’s and Dementia?

Problems with communication — like most other Alzheimer’s and dementia symptoms and behaviors — grow progressively worse. Being forgetful and tongue-tied with names and words may occur for years before individuals and families seek medical answers. By the end, dementia patients are often completely non-verbal.

Here’s what to expect by the distinct stages of Alzheimer’s and other types of dementia.

Early Stages

Well, you read it in our fictional example above. Your loved one will be alert and entirely capable of having meaningful and productive conversations. In fact, they may go long periods with no communication issues whatsoever, carrying on work responsibilities and daily relationships with a strong vocabulary, comprehension and rationality. 

But something seems off — even if it’s only sporadic. They may easily lose their train of thought. Discussions may head one way and then veer off course to a different topic. They may seem distracted. They may “lose it,” cutting themselves off mid-sentence when the subject or upcoming words become foggy.

Some may grow impatient or aggravated. (Who wouldn’t be when more frequently and inexplicably stumbling through their own language?) They sometimes become quiet. And others with multilingual capabilities have been known to revert to their first language.

Middle Stages

You may spend many years in these stages with your loved one. Expect much of the same — losing places in thought, misplacing words and names, etc. — but more magnified and growing steadily worse. You won’t be overlooking or rationalizing symptoms here. It’s definitely Alzheimer’s and/or another type of dementia. Your loved one may have already received a diagnosis. Like it or not, they’re well along this path and communication will only become more confounding.

As their condition progresses, they may instinctively resort to gesturing or describing things to make a point. They might glance to the sky and, not remembering the word “cloud,” use their hands to gesticulate something billowing above their heads. Or, perhaps even misplacing your own name, they might refer to you with a term of endearment like “my lovey,” “big guy” or “handsome/beautiful.”

While memory indeed plays a key role in communication, it’s important to remember Alzheimer’s and dementia also erode many other cognitive abilities. (As we always say, dementia is more than memory loss.) By the mid-stages of many diagnoses, your loved one could be dealing with: 

You may notice their discussions beginning to lose a foothold in reality, rationality and logic. They may tell fantastical stories about things they’ve supposedly seen and done — little white lies to fill silence or when they lose the conversation. Some persons living with Alzheimer’s and dementia can even become manipulative, especially when it comes to things they want/don’t want to do. (ex. “But you told me I could drive to the beach!”)

Late Stages

Nearing the end, the person your loved one once was may have all but vanished. But rest assured, there’s a beautiful soul in there with plenty to say (if you know how to pay attention). 

They will likely become non-verbal. But they’re not doomed to sit in silence. With some engagement, they can still enjoy family and life’s other gifts — and, just as importantly, effectively communicate their needs and wishes. 

In the absence of talking, they may exclusively use gesturing to signify things they want. Pointing toward their mouth or a pitcher of water could indicate they’re hungry or thirsty. Similarly, smacking their lips together may mean their mouth is parched. Using facial expressions, eye contact, grunts or hums they might express:

  • Happiness at seeing a dear family member or friend
  • Pain and discomfort with hot, cold, seating and bedding
  • Desire to enjoy an activity (like taking a walk or watching a movie)
  • Distress from overwhelming situations

Music and art therapy have even been known to temporarily restore verbal communication, memory and cognition to Alzheimer’s and dementia patients. In a previous blog, we introduced a man named Henry who hadn’t spoken in years, but when given headphones playing his favorite music, he sprung to life and recalled vivid memories of favorite tunes and dances from his younger days!

Let’s Prepare for Effective Communication with Alzheimer’s and Dementia

You know communication will become more difficult, especially when your loved one reaches the mid- to late stages. Here are some effective communication strategies for when times get tough. You must plan ahead, that’s exactly what we help individuals and families to do.

#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to guide the process in a caring and compassionate way.

community care

It Takes a Village: Community Care for Dementia Patients

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You’re trying so hard. We know. Being a great care partner for a loved one living with dementia is most certainly a labor of love. You may feel very alone. You likely feel as if you carry the weight of the world on your shoulders, keeping up with the steady march of dementia and its common calling cards, watching the person you’ve loved so much slowly fade away.   

But we’ll let you in on a little secret: you don’t have to do it alone. Loving care and support for ANYONE takes a village — a community of individuals and organizations that can provide relief, guidance and direct services. Here are some great community care options for dementia patients.

Community Care for Dementia Patients: Building Your Village of Support

OK, so I admit “community care” sounds formal. Families and individuals who’ve just received a diagnosis of Alzheimer’s and/or dementia may envision an institutionalized world of walls, structures and systems meant to CONTAIN and RESTRICT rather than NURTURE. 

But that’s not the case at all. Community care begins at home and can extend to a vast network of services and care professionals devoted to honoring the individual and their specific needs. 

Let’s build a life-care plan and care-partner team for a life worth living.

Dementia Care Begins at Home

Your loved one living with dementia likely wants to stay independent at home as long as possible. Involved family members often want that, too. Who could blame them? Home is where the heart is, after all.

You may be the spouse, sibling, other close relative, or a very close friend. (Helpful hint: think of the team as a series of concentric circles or spheres of influence moving outward, with your loved one at the center.) So who’s closest? Does someone live close by to visit daily, or at least frequently? 

A great life-care plan should first factor proximity to provide daily love and support by close loved ones who can:

  • Offer assistance with cooking, cleaning, groceries and other housework
  • Document current and evolving care needs
  • Coordinate medical visits and provide transportation, when necessary
  • Organize bills and other financial needs
  • Or simply stop by for a cup of coffee

Again, your loved one likely wishes to handle responsibilities independently as long as they’re capable. But dementia marches on. It’s a thief that’ll relentlessly erode that autonomy. Best to prepare roles, responsibilities and routines now for what comes later.

Helpful Community Care Agencies for Dementia

Strong as the urge may be to do everything, you and the entire care-partner team will need support as your loved one’s dementia progresses. So let’s build your village to include some helpful community care agencies. 

Your life responsibilities don’t go away as your care-partner responsibilities increase. You likely still need to work (unless you’re happily retired), care for younger relatives, and tackle your own home and financial duties. And, quite frankly, caregiver burnout (aka compassion fatigue)  causes even the most capable and energetic among us to need a serious break. 

So who looks out for your loved one while you step away briefly? Good news! Most communities today have well-established, reputable agencies for providing dementia care and family services.  

These may include:

Assisted Living, Nursing & End-of-Life Care

Eventually, the time may come when living at home is no longer feasible — or safe. Your loved one and the care-partner team will require 24/7 support. In later stages of dementia, the individual will lose the human capacities and instincts we all take for granted: speaking, eating, bathing, etc. And approaching the end, your loved one will likely require professional support to ease the end-of-life transition.  

Your life-care plan may already involve a chosen assisted-living, nursing or memory-care facility. End-of-life professionals including hospice, palliative care and even death doulas provide compassionate care to ease pain and suffering for everyone involved. Many such agencies will also provide or refer spiritual care and counseling for your loved one and close family/friends to make sense and peace of the dying process.

We recommend having these conversations early in the planning process, so everyone on the care-partner team can assess end-of-life care with a clear head and without bias. The last thing you want is for confusion and ambiguity to muddle your loved one’s final wishes when it’s too late and they can no longer express them clearly.

Building a Community Care Plan for a Life Worth Living with Dementia 

As a professional life-care planner and a Florida Board-certified Patient Advocate, I assist persons living with dementia and their care-partner teams often. And then I come home to my life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia. I live these realities daily, and I want to help you!

If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

Hospice and Palliative Care

Is There a Difference Between Hospice and Palliative Care?

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Hospice and palliative care deliver many of the same services. They both ease pain and suffering from serious conditions. But there’s a significant difference between hospice and palliative care: the expected outcome.

Palliative care is delivered when a medical condition, no matter how serious, is not at the moment considered to be life threatening. For example, an individual may enter palliative care while receiving cancer treatments or after a serious car accident with a generally positive outlook that recovery is possible (and likely). On the other hand, hospice is considered end-of-life care as most individuals are expected to live six months or less. It’s not a surrender, but rather a comfort tactic for the individual and a resource haven for care-partner team members. 

Both Hospice and Palliative Care Deliver Comfort Care … but for Different Reasons

Let’s break down the similarities and differences a bit further.

Hospice Care

Hospice is often one of the final steps in a well-made life-care plan. At this stage, medical professionals and care-partner team members agree that the individual will die soon. Whether they have a terminal illness like cancer or dementia or they’re simply at the end of a lengthy and dignified aging process, hospice delivers whatever level of comfort is necessary to pass peacefully. Hospice care can be administered at home or in a nursing home or assisting-living facility.

At this stage, there’s very little concern over how to achieve comfort. Doctors would normally steer clear of potentially addictive opioids for pain management, but individuals under hospice care don’t need to be so cautious. Dying can be a very painful and uncomfortable process even without terminal illnesses. Individuals often experience everything from severe discomfort to depression. Doctors may prescribe:

  • Strong pain medications (like the synthetic opioid Fentanyl)
  • Antidepressants 
  • Anti-anxiety medications
  • Antipsychotic medications (to address common hallucinations)
  • & More

Contrary to popular belief, the goal of hospice is not to simply “dope” elder loved ones. Staff administer appropriate doses of meds and other treatments to provide comfort, improve appetite as best as possible, and allow the person to enjoy remaining time with loved ones.

Hospice care also supports care partners, family and friends. Watching a loved one die is a heartbreaking experience, quite often accompanied by powerful feelings of sorrow, anger, confusion and even guilt over not being able to “do enough.” Hospice staff personally tend to immediate emotional needs and refer individuals to counseling services, when appropriate. 

Most medical insurances, as well as Medicaid and Medicare will cover all hospice costs. To be eligible, you will, however, need a hospice doctor and a private physician to certify in writing that your elder is terminally ill and expected to live six months or less.

Palliative Care

Palliative care also delivers comfort for debilitating diseases and conditions, but with a more positive prognosis. Individuals under palliative care are expected to be cured or at least recover to eventually require little or no further medical intervention. It can cover earlier stages of many of the same conditions treated under hospice: cancer, congestive heart failure, kidney failure, Alzheimer’s disease and other forms of dementia, etc. (In fact, my life partner/care partner Brian LeBlanc receives palliative care treatments for his advancing Alzheimer’s and vascular dementia. He is still quite lucid and functional, likely with many great years left. But his conditions have all sorts of effects, from hallucination to disorientation, that require comfort care.)

The aim is to improve quality of life. A medical condition could be horrendous for many months or even years. Surgeries and other treatments like chemotherapy to beat cancer can be even more unbearable than the diseases. Recovery can be a long road, but palliative care sees the destination and wants to get there as comfortably as possible. 

Much like hospice, palliative care professionals may provide strong medications like opioids to manage pain and discomfort. Treatments may also include stabilizing care and physical therapy to keep the body strong in its prolonged fight. Also like hospice, palliative care addresses mental health for both patients and families.

Conditions change. Seemingly overnight, an illness could become deadly that wasn’t terminal when beginning palliative care 18 months ago. Palliative care can easily transition to hospice, if end-of-life care becomes necessary. It’s also mostly covered by Medicaid, Medicare and most major health plans.

Hospice and Palliative Care Are Different, But They Deliver Comfort When Needed Most

You never know what life’s journey will bring. Over 1.5 million Medicare beneficiaries received end-of-life hospice care in the U.S. in 2018. The World Health Organization estimates over 40 million people worldwide require palliative care each year. We all deserve a life worth living, and comfort care provides that service for those who need it most.

We recommend having these conversations with your elder loved ones early in the planning process, so everyone on the care-partner team can assess end-of-life care with a clear head and without bias. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

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