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board-certified patient advocate protects autonomy and decision-making

Board-Certified Patient Advocate: A Guide & Protector of Autonomy

    I’ve been inspired recently. That’s not to say life has been fun or easy. If you’ve followed this blog for a while, you’re likely familiar with my dual personal and professional roles as a Board-certified Patient Advocate and care partner to my life partner, Brian. While guiding elders and families here in the Clearwater, FL area on the life-care planning process, I’ve also been the lead care partner for Brian as we navigate the latter stages of his Alzheimer’s and vascular dementia.   

    Those latter stages now have placed my Brian in advanced nursing care, a heart-wrenching decision that HAD to be made for ’round-the-clock care. Managing that care at home? As much as individuals and families aspire to that ideal, in so many cases it just can’t be done. Those conflicting feelings, prepared as I am from decades of professional experience, never go away. Negative experiences – conflict with nursing home staff, feelings of guilt, etc. – are inevitable.  

    Part of my inner anguish stems from knowing what to spot – knowing how care should be managed, how residents should be treated, and how families and decisions should be respected. 

    Unpacking those feelings is best saved for a later blog after I’ve had time to reflect. But the inspiration remains for Patient Advocacy as a concept, best expressed by expert Trisha Torrey. Today we dive into what it means to be a guide and protector of autonomy as a Board-certified Patient Advocate.

    The Essence of Patient Advocacy

    Trisha Torrey beautifully defines a Patient Advocate as a guide or advisor about care policies, emphasizing a crucial point. Patient Advocates are not decision-makers for clients but rather protectors of their autonomy, she says. 

    This encapsulates the very essence of our role: to empower individuals in making informed decisions about their health care while safeguarding their right to choose.

    Guiding Elder Care with Compassion

    As a Board-certified Patient Advocate, my role is to be your compassionate guide through the often complex and overwhelming landscape of healthcare. I don’t make decisions for you, but I provide the expertise and support needed to navigate the intricate web of care policies and options.

    Compassion is easily defined, but hard to pin down. It literally means “to suffer together.” Even the strongest desires to be the most compassionate caregiver, run against the grain of human existence. No human wants to suffer, but that’s your task – to suffer alongside your loved one no matter the stakes or outcome.

    So that’s where I come in, helping you as a care partner to deliver compassion for your loved one by reducing or eliminating stressful decisions. 

    Coordinating Care with Precision

    One of the key aspects of Patient Advocacy is coordinating medical care, helpful resources and logistics. This involves ensuring that all aspects of elder care are seamlessly integrated and aligned with their unique needs and preferences. 

    From medical appointments and treatment plans to financial considerations and emotional well-being, coordinating care is a meticulous process that requires expertise and dedication.

    Here are some of the benefits of care coordination in life-care planning:

    1. Informed Decision-Making

    Life-care planning is a comprehensive process that begins with understanding individual needs and goals. A Patient Advocate empowers care-partner teams to make informed decisions that align with unique values and preferences.

    2. Streamlined Communication

    Communication breakdowns among healthcare providers can be a significant challenge. I’ve seen this frequently with my Brian and clients alike, as one medical professional makes a decision without considering how it would affect treatment from another.

    Of course, they try to communicate. But it doesn’t take much for one prescription to fall through the cracks. Caregivers often spend hours on the phone trying to fill in the blanks. 

    A skilled and experienced Patient Advocate works to bridge these gaps, ensuring that everyone involved in your care is on the same page. This streamlined communication enhances the effectiveness of your care plan.

    3. Financial Wellness

    The aging process, in good health or bed, involves financial considerations associated with each step. Among others, the list may include paying for health care, moving to assisted living, estate planning, and the distribution of assets following a loved one’s passing. 

    Whether it’s understanding insurance policies or exploring financial assistance programs, a Patient Advocate ensures that your loved one receives the care they need without unnecessary financial burdens.

    4. Emotional Support

    Elder care can be emotionally taxing. As a Patient Advocate, I provide unwavering support, offering a compassionate ear and guidance through the emotional aspects of life-care planning.

    It’s stunning how infrequently the emotional needs of care-partner team members are left unaddressed, especially at end-of-life. That’s why, in addition to being a shoulder to cry on myself, I often recommend hospice agencies and death doulas who may provide additional support, counseling and even spiritual care for everyone involved.

    Advancing Levels of Care: A Continual Support System

    As your loved one’s health care needs evolve, a Board-certified Patient Advocate remains a constant support system. Whether you’re transitioning from independent living to assisted care or facing the challenges of advanced medical conditions, the coordination of elder care must adapt seamlessly to your changing requirements.

    Empowerment Through Autonomy: The Maureen Rulison Difference

    My approach as a Patient Advocate in Clearwater, FL is founded on the principles of empathy, understanding and respect for your autonomy. I’m not here to dictate choices, but to empower decisions that resonate with your individual and family values.

    If you’re ready to embark on a journey of Patient Advocacy and life-care planning, I invite you to reach out. Your elder care journey deserves an advocate who walks with you; not ahead of you.

    person-centered care for dementia

    Journeying with Compassion: Person-Centered Care for Dementia

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      We’ve certainly discussed person-centered care before. Also known as person-focused care, it’s a care philosophy that empowers the individual(s) at the center of the treatment and compassion required in the aging process. That is, your loved one – in good health or bad.

      Person-centered care for dementia is particularly important due to the regressive and terminal nature of the disease. Here’s an unfortunate reality for nearly 600,000 people here in Florida who live with Alzheimer’s or another form of dementia: dementia has a 100 percent mortality rate. While most die from secondary conditions, primary symptoms of dementia set the stage for a slow and steady path to end-of-life.  

      As we embark on the challenging journey of advancing dementia, person-centered care is a guiding light that empowers both individuals and their care partners. Here we explore the core of person-centered care for dementia, a philosophy tailored to recognize unique needs of everyone involved.

      How to Factor Person-Centered Care for Dementia in a Strong Plan

      Meet “Anna,” a resilient soul facing the challenges of late-stage Alzheimer’s. She also has a secondary dementia diagnosis of primary progressive aphasia, which began impacting her speech and comprehension nearly 10 years ago. Anna is an archetype of thousands of individuals I’ve assisted as a Florida Board-certified Patient Advocate and professional life-care planner. 

      Since early stages, Anna refused to be labeled as a “sufferer.” This philosophy acknowledges the significance of language. Anna is not her disease. Anna simply lives with the disease, embracing life on her own terms, even in the face of late-stage memory and cognitive challenges.

      So let’s first unpack person-focused language in Alzheimer’s and dementia care.

      Person-Centered Care & Language: A Compassionate Approach

      It’s interesting how language is such a powerful focal point of person-focused care. Words matter. Negative labels undermine dignity. Some people – and even medical professionals – don’t know they’re running afoul of conventional decency. 

      When you’re considering years of dementia care from early stages to the death transition, the least your loved one’s professional and family care partners can do is address the individual appropriately and compassionately. Here are some examples:  

      ‘Caregiver’ vs. ‘Care Partner’

      Late-stage dementia care embraces the shift from “caregiver” to “care partner,” reflecting a more equal and respectful relationship. It emphasizes that care is a collaborative effort, where everyone involved plays a crucial role, fostering partnership over dependency. 

      ‘Resident’ vs. ‘Patient’

      In person-centered language, an individual is referred to as a resident, someone living in a place, not merely a patient who is dependent on care. The power of words extends to the reframing of labels like “falls risk” to “a person who may fall.” Do you see how an easy change alters the perception from defining someone by their condition to a more compassionate expression of vulnerability?

      ‘Prefers Not To’ vs. ‘Non-Compliant’ 

      Preference and autonomy must be honored. In end-stage dementia, your loved one will no longer be able to consistently verbalize their needs and wishes. This is where a strong life-care plan factors personal preferences while your loved one is still able to advocate for themselves. Earlier in the planning process, they’ll be able to express: 

      • Preference for one activity over another
      • Preference for (or against) pain medications or antipsychotic treatments
      • Preference for cultural & spiritual necessities
      • Preference for (or against) do-not-resuscitate (DNR) orders  

      “Prefers not to” replaces the judgmental term “non-compliant,” recognizing that autonomy persists even in the face of cognitive challenges. It’s not the individual’s job to comply with orders. It’s on care partners and professionals entrusted with their care to comply with your loved one.  

      ‘Home’ vs. ‘Facility’

      Person-centered care for dementia also encompasses institutional labels. A care setting becomes a “home,” a place of comfort and healing, erasing the clinical connotations of the term “facility.” 

      Prisons are facilities. Locations of skilled medical care are homes.

      Empowering Decision-Making, Individuality & Autonomy in Dementia Care

      Now, we turn to decision-making. Consider this anecdote of “Jerry,” another archetype of many men living with dementia for whom I’ve served as Patient Advocate. For the sake of our narrative, Jerry is in a nursing home battling the side effects of medications. 

      Person-centered care empowers him to direct his treatment, urging healthcare professionals to explore alternatives. In late-stage dementia, the narrative shifts from a traditional approach to one that respects the autonomy of the individual in making medical decisions. And when Jerry no longer has the capacity to advocate for himself, the appropriate care partner(s) will make decisions aligning with HIS plan. 

      Family Choices: Honoring Individual Preferences

      Let’s say Jerry is married to Rebecca. As his Alzheimer’s progressed to mid-stages, their plan called for the transition to the nursing home. Rebecca is otherwise healthy and doesn’t require that level of care, but these two lovebirds choose to remain together.

      Despite disagreements from others, person-centered care for dementia acknowledges and honors their choice. It emphasizes that each person, even in the midst of declining capacities, has the right to guide their own care journey.

      In most cases, care decisions must be made on your loved one’s behalf in the end. A strong life-care plan ensures the chosen loved one has the authority – backed by well-prepared legal documents under the guidance of a Patient Advocate and a licensed attorney – to do so.

      Building the Circle of Support

      Person-focused principles are not merely shifts in philosophies and linguistics. Rather, they’re a mobilization of support networks. At its core, it acknowledges that the person living with dementia knows themselves best even if they’re declining. 

      Dementia care takes a village. So many medical professionals and loved ones are charged with specific supporting roles. Person-centered care places your loved one at the center of the care-partner circle. It ensures care decisions are directed after consideration by the individual, rather than care edicts handed down from on high. 

      (Helpful hint: as a Patient Advocate here in Clearwater, FL, I help build and guide care-partner teams to provide effective and compassionate care.)

      Reversing the Stigma of Aging & Illness

      Unfortunately, dementia often carries a negative stigma. It’s not as if individuals choose the disease. In general, people can get uncomfortable around aging and illness. Even if they’re well-intentioned, they may not know what to do or say around persons living with dementia. 

      Person-centered care flips this narrative on its head, recognizing age and illness as natural human processes – even the advanced stages of dementia. It contributes to reshaping societal attitudes and honoring the reality of the human experience.

      Different Strokes for Different Folks: Embracing Cultural & Spiritual Diversity

      Person-centered care for dementia celebrates cultural and spiritual diversity. America is the “Great Melting Pot,” and Florida is especially so. As a retirement destination, it brings people from every ethnicity and cultural background. Many view dementia and end-of-life care differently. 

      Acknowledging that one size doesn’t fit all, person-centered facilitate alternative perspectives and options to honor loved ones in life and in death. It encourages:

      • Freedom of religious & cultural expression
      • Special rituals, prayers & treatments
      • Dietary preferences & restrictions
      • Reflection & closure

      Person-Centered Care: A Gateway to Better Care, On Your Terms

      Person-centered care for dementia recognizes individuals beyond their cognitive decline, restoring power to their hands. By championing this approach, we join the ranks of organizations like Pioneer Network and Eden Alternative, trailblazers in elder culture-change efforts for decades.

      At Caregiver Support and Resources, LLC, we are dedicated to exploring every avenue of person-centered care for dementia through Florida Board-certified Patient Advocacy, life-care planning, and more. If you seek guidance in navigating the unique challenges of dementia care, reach out to me at maureen@caregiversupportandresources.com.

      end-stage dementia care strategies

      Navigating the Shadows: 7 End-Stage Dementia Care Strategies for Caregivers

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        My Brian’s eyes would play tricks with him when was still living at home in earlier stages of his Alzheimer’s and vascular dementia. Especially at night. The shadows cast from the moonlight out our window over Tampa Bay, which normally looked so peaceful, caused hallucinations and paranoia and led to many sleepless nights. 

        Dementia care is a delicate dance. In later stages – Brian’s experience in the nursing home today – it’s even more so. Those imaginary shadows he battled earlier are now manifesting both physically and metaphorically, shrouding the dementia journey for not only Brian, but myself and the professionals entrusted to his care. 

        Which calls us to consider the most compassionate end-stage dementia care strategies for caregivers. Difficult as these processes may be, I speak for all caregivers in that we LOVE our family members and friends who live with dementia. And LIVE is the operative word. They are LIVING with dementia, and we are lovingly chosen to assist that journey.

        Compassionate End-Stage Dementia Care Requires Planning & Understanding

        End-stage dementia marks a poignant chapter in which shadows grow longer and the light of recognition flickers. More than 1 million Americans today are in the final stage of Alzheimer’s and other types of dementia.  

        Along this challenging journey, care partners often find themselves in uncharted territory, seeking comfort for their loved ones and solace for themselves. In this blog, we’ll explore compassionate end-stage dementia care strategies to illuminate the path and provide unwavering support during profound challenges.

        Here are some end-stage dementia care strategies that work to:

        • Facilitate daily functioning
        • Compassionately address physical, emotional, social & spiritual needs
        • Foster an environment for person-centered care

        1. Gain a True Understanding End-Stage Dementia

        It’s helpful to gain a true understanding of dementia as a degenerative condition. (Related reading: 11 Common Alzheimer’s & Dementia Behaviors.) The very nature of dementia is regression. Dementia is a thief that steals away memories and abilities, often in reverse chronological order, until there’s nothing left but an infant-like state of dependence. 

        End-stage dementia unfolds long after most memories and cognitive functions have dwindled. It’s likely been years since they’ve driven a car or prepared a meal. Your loved one may retain only fragments of cherished memories. Communication in end-stage dementia becomes a literal and figurative whisper of what it once was. Your loved one may say only a few words or phrases, if anything at all. 

        No one knows exactly “what’s there” in the final stages of dementia. Individuals who still have the ability to walk may appear to wander aimlessly. They may recognize no one, but a familiar face, photograph, artwork or song could arouse happy responses. Something’s happening. Neurons are firing. But care partners and fellow loved ones shouldn’t expect any long-term improvements. 

        2. Embrace Non-Verbal Communication

        The next logical step is to address communication. In late-stage dementia, your loved one’s non-verbal cues often take center stage. As noted above, their capacity for speech will be severely diminished. Approaching death, they may not speak at all.

        How do you gauge their needs if they’re hungry, in pain, hot or cold, anxious, etc.? Recently in the nursing home, my Brian often has taken to emotional outbursts and apparent “theatrics” when he’s simply communicating that he’s in pain. Even experienced medical professionals mistakenly attribute negative behavior to dementia psychosis – often errantly prescribing powerful medications that carry worse side effects – when your loved one actually needs a blanket or to be toileted. 

        A gentle touch, a reassuring smile, or the warmth of a hug can transcend the barriers of language, offering comfort and connection. In the language of silence, our hearts speak the loudest.

        3. Create a Soothing Environment

        Crafting a serene and familiar space is paramount among end-stage dementia care strategies for caregivers. Soft lighting, familiar scents and cherished music can subconsciously stir feelings of safety and security. Individuals with late-stage dementia also appreciate a sense of continuity, which provides calm clarity amidst the encroaching shadows. 

        Dementia’s nature is confusion. Even family and friends, while friendly faces, can be complete strangers. Imagine knowing no one, even if you’ve known them for years. Imagine every room and hallway being an unfamiliar maze.

        But your loved one’s bedroom – and other rooms in which they spend most of their time – can be designed and organized for their comfort. In the sanctuary of a familiar room, memories find refuge.

        4. Personalized Care Plans

        We always say, “If you know one person with dementia, you know ONE person with dementia.” What works for one, is not guaranteed to work for another. Tailoring care plans to individual preferences ensures dignity and respect. Just as importantly, a well-factored life-care plan includes care measures, treatment preferences, social/emotional/spiritual needs and more.

        Understanding their unique history, preferences and rituals helps create moments of joy and a sense of purpose, even at the height of cognitive decline. In personalization, we discover the poetry of our loved ones’ essence.

        5. Incorporate Sensory Stimulation

        Soft textures, soothing sounds and fragrant aromas evoke memories and sensations, offering a bridge to a world slipping away.

        As with art and music, sensory stimulation for any stage of dementia care promotes brain function. In the end, that won’t result in any significant functional improvement, but comfort itself is worth its weight in gold. In the tapestry of senses, we weave threads of connection.

        6. Foster Connection Through Reminiscence

        Storytelling is a vessel through time. Reminiscing about shared experiences, even if words falter, fosters a sense of identity and belonging.

        In the final stage of dementia, your loved one won’t be an active participant in discussions. But discussing fond memories and offering kind words is a peaceful experience. In the echoes of shared stories, we find threads that bind us.

        (Helpful hint: Such activities are particularly beneficial for the mental and emotional well-being of caregivers themselves.)

        7. Care for the Caregiver

        That’s a great spot to segue into our final point: caregiver self-care. The weight of end-stage dementia care is immense. Care partners must prioritize self-care, seeking support from friends, family or support groups to navigate the emotional toll of this profound journey. Family and friends on the caregiving journey must be able to lean on each other for support.

        In self-care, we find strength to be the pillars of support.

        Caregiver Tips: Strategies for Late-Stage Dementia Care

        Dementia care is a journey of love, resilience, and unwavering compassion. We hope these end-stage dementia care strategies for caregivers help make sense of the difficult death transition. It’s important to keep in mind, dementia is more than memory loss.

        As care partners, we must illuminate the shadows, providing comfort for our loved ones in the face of advanced dementia. In each tender moment, we discover that even as the mind dims, the spirit persists, and our shared humanity transcends the boundaries of time and memory.

        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 provide referrals and guide the process in a caring and compassionate way.

        legal documents Florida caregivers must have

        Legal Documents Every Caregiver Must Have in Florida 

          By Maureen Rulison
          Caregiver Support and Resources

          I shudder to describe the horror stories. As I’ve said before, being the most compassionate care partner possible is a labor of love. But it’s even more difficult to manage in the shadow of healthcare and legal bureaucracy. Imagine, in the worst-case scenario, not being able to advocate for something YOU KNOW your loved one needs and wants because you don’t have a little piece of paper granting you the right. 

          Let’s not let that happen! These are the legal documents every Florida caregiver must have in place to effectively:

          • Provide home care
          • Coordinate medical care & community resources
          • Manage finances & personal affairs
          • Assist medical decision-making
          • Navigate end-of-life care & estate matters

          These documents not only give you (or other members of the care-partner team) authority to make important decisions on their behalf, but most importantly to ensure that their wishes are respected. Let’s explore the essential legal documents that caregivers must have in the state of Florida to navigate the complexities of caregiving with confidence.

          Essential Legal & Financial Documents for Florida Caregivers

          Let’s make sure you’re (legally) prepared to help manage your loved one’s medical care and personal affairs, and to advocate for them if/when they become incapacitated. 

          HIPAA Authorization Form

          The Health Information Portability and Accountability Act (HIPAA) sets strict rules for safeguarding individuals’ health information. In Florida, as in other states, you’ll need a signed HIPAA authorization form to access your loved one’s medical records and receive updates from healthcare providers. 

          This release form grants you permission to receive sensitive health information, allowing you to stay informed about your loved one’s medical condition, treatments and progress.

          So many care partners assume being present and informing care decisions is their right. I can’t count how many times a phrase like, “But I’m her daughter,” has come up while attending doctor visits. You’re right. You are their daughter (or another close family member). But the HIPAA Authorization Form STILL must be filed before any medical professional will let you near the process. 

          Of course, they’re protecting themselves first from potential litigation, but HIPAA is in place for a good reason: to ensure sensitive information doesn’t end up in the wrong hands. 

          Medical Power of Attorney (POA)

          Medical power of attorney, also known as a health care proxy, is a vital legal document in every state, including Florida. It designates an agent – usually a primary care partner – to make medical decisions on your loved one’s behalf if they become incapacitated or are otherwise unable to communicate wishes. 

          You know what your loved one wants and needs. You know, for instance, if they don’t wish to have certain pain medications (or any at all). Your loved one may follow specific rules aligning with spiritual and cultural beliefs. Or they may simply have dietary restrictions.

          Having a medical POA empowers you to act decisively in critical healthcare situations, as well as those sometimes fuzzy personal wishes that some providers may overlook – or neglect. Most states accept medical power of attorney from other states, but some like “The Forbidding Four” – New Hampshire, Ohio, Texas and Wisconsin – have stricter laws. 

          Living Will

          A living will, aka advance directive, outlines your loved one’s wishes regarding medical treatment and end-of-life care. As a primary member of the care-partner team, you need access to their living will to ensure their medical professionals know what to do. Like medical power of attorney, the living will is typically filed with your loved one’s licensed estate-planning attorney.

          In Florida and most other states, a living will allows your loved one to specify the type of medical interventions and life-sustaining treatments they would receive or decline. This document mandates medical professionals and other professional caregivers follow your loved one’s choices, even when you must act on their behalf.

          Do Not Resuscitate (DNR) Order

          More specifically, a Do Not Resuscitate (DNR) order is a medical directive that states your loved one’s preference to forgo cardiopulmonary resuscitation (CPR) if they’re dying. This may be filed as part of a living will or as a stand-alone document. 

          This document must be signed by a physician and is an important addition to your loved one’s medical records if they wish to avoid aggressive life-saving measures in accordance with personal wishes, or to avoid undue stress on surviving family members.

          Designation of Preneed Guardian

          In Florida, a designation of preneed guardian allows your loved one to select who will act as their guardian if they become incapacitated for any reason. The statute, established in 2022, protects youth and adult dependents alike by avoiding legal guardianship proceedings in emergency situations.

          This document prevents conflicts and ensures someone they trust will be appointed as their guardian, should the legal need arise.

          Last Will & Testament

          While not directly related to the caregiving journey, having a valid last will and testament is essential for your loved one’s estate planning in Florida. Sad as it is, life always comes to an end. Your loved one certainly wants their final wishes, funeral arrangements, assets and legacy to be managed appropriately leading up to and following their passing.  

          There must be no ambiguity. A will outlines how their dying days are to be spent, and how assets and belongings will be distributed – as they would’ve wanted it. This legal document ensures that their wishes are carried out, minimizing the potential for family disputes and confusion in the most tender of times.

          As a Florida Caregiver, Ensure Your Loved One’s Legal & Financial Documents in Order

          Having the right legal and financial documents in place is critical to effectively manage your loved one’s care and honor their wishes. It’s true in Florida as in any other state. While most are similar, there can be distinct differences in the documents required. Don’t be caught without. 

          I’ve seen families ripped apart and legal battles linger for years over the proper treatment of loved ones – and especially with what happens after. Consulting with an experienced elder law attorney who practices in Florida is a great place to start. We often refer our clients to Peebles & Gracy, P.A. of Dunedin, FL to help care-partner teams navigate the legal aspects of caregiving and ensure proper measures are tailored to your loved one’s unique needs and circumstances. 

          For all other life-care planning and Patient Advocacy needs, trust Caregiver Support and Resources, LLC. We’re here to offer over 25 years of experience providing the best possible care and support.

          (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.)    

          ready for your loved one's doctor visit?

          Are You Really Ready for Your Loved One’s Next Doctor Visit?

            By Maureen Rulison
            Caregiver Support and Resources

            Well, are you? As a devoted care partner, readying for your loved one’s next doctor visit may not be your highest priority in the day-to-day. Lord knows, you have a million-and-one other things to do and worry about in providing the love and care your loved one deserves.

            But prepare you must, because there’s so much at stake. It only gets more complex as our loved one’s age – in good health or bad – as the number of medical professionals required for health and well-being increase exponentially. 

            Perhaps you already know the drill: 

            • Cardiologist on Tuesday
            • Neurologist the following Tuesday
            • Primary care 3 weeks from now
            • Endocrinologist next month

            Oh, yeah, and you should probably schedule that ear, nose and throat specialist for their sleep apnea (and follow up about YOUR OWN aching knee). In your case, you may have more or less. A lot of individuals I’ve served as a life-care planner and Florida board-certified Patient Advocate have EVEN MORE DOCTORS – a gauntlet of appointments, prescriptions and treatments that must all be organized, planned for effectiveness and coordinated to ensure one decision doesn’t interfere with another.

            So Let’s Plan for Your Loved One’s Next Doctor Visit (& Every One After)

            Now, your loved one may be quite independent, and even in advancing age they feel confident speaking with nurses, doctors and clinicians. That’s great! But time marches on. They may increasingly enjoy a helping hand in:

            • Chronicling symptoms
            • Explaining daily struggles
            • Advocating needs
            • Recalling family history
            • Documenting prescriptions & treatments
            • & More

            Even providing transportation to and from doctor appointments is a valued contribution. There’s no responsibility too small. No matter your role as a care partner, being truly prepared for these appointments is key to making the most out of them. So let’s get all your “ducks in a row,” so to speak, and prepare for your loved one’s next doctor visit.

            Scheduling & Logistics

            Your loved one has to get there – and get there on time – or the appointment quite literally won’t happen. With how long it takes to schedule a doctor appointment, your window is razor thin. On average, it takes 40 days to schedule a specialist appointment (although, in my personal and professional experience, it’s usually MUCH longer). 

            Keeping track of doctor appointments can be challenging, especially when you have multiple providers involved in your loved one’s care. It’s crucial to remember the schedule and avoid missing any appointments. 

            Get a calendar – and use it! Refer to it often. It doesn’t matter if it’s a Google calendar on your smartphone, a physical appointment book or a marker board on your refrigerator. Mark down upcoming visits. Make notes about what your loved one will need and other important information worth sharing with their medical professional(s). Set reminders to help you stay organized.

            Medical History & Current Realities

            While doctors may have access to your loved one’s medical history, it’s still important to bring an updated copy to each appointment. Family history, too. This ensures the healthcare provider has the most accurate and comprehensive information available to inform decisions.

            Include details about current prescriptions, treatments and even any vitamins/mineral supplements your loved one takes. Avoid potential complications. It could be a matter of life and death.

            (Helpful hint: NEVER ASSUME doctors are sharing updated information in real time, despite care coordination being easier than ever before in the 21st-century digital realm.)

            It helps to keep medical histories, insurance cards, identification and other pertinent information in ONE BINDER, which can securely house info in a centralized location and can be segmented by doctor.

            Speak the Truth

            Your loved one lives their truth 24/7. As a primary (or even supporting) member of the care-partner team, your level of involvement may range from part- to full-time. You see and experience the realities of their health status and aging process first-hand.

            Just as your loved one should feel no qualms about personally speaking their truth and advocating their needs, you too should feel free to express your feelings and opinions regarding their care. You may recall that a certain medication caused an adverse side-effect, although your loved one may not recall it. If nothing else, it’s one more piece of information to help make – you guessed it – INFORMED DECISIONS.  

            But Listen Intently

            While you may have a good understanding of your loved one’s needs and preferences, it’s essential to be open and receptive during the doctor visit. A medical consultation, at its best, is a two-way dialog meant to assess realities and plan treatments TOGETHER.  

            Remember: healthcare professionals have years of training, education and expertise in their field. Be prepared to listen and consider their opinions and recommendations. Engage in respectful discussions and ask questions when needed. 

            Take Notes

            Bring a notepad or use your smartphone to jot down important information, instructions and recommendations for your loved one’s care. Heck, bring a recorder and transcribe the important details with a fresh mind afterward. Great documentation will serve as a reference for future visits and discussions with other doctors. It ensures nothing will be overlooked and helps in coordinating care among the different medical professionals and community resources involved in the continuum of care.

            Again, while your loved one’s healthcare provider may be taking detailed notes themselves, NEVER ASSUME this information will be shared in real time or be made available in a timely manner by other providers. It’s best to have your own record as a standby, if nothing else.

            So When’s Your Loved One’s Next Doctor’s Appointment? Are You Truly Prepared?

            Your presence and preparedness during your loved one’s doctor visits play a vital role in ensuring compassionate care. Of course, it can be a daunting task shuffling so many and keeping everything organized.

            If you need help, a Florida state certified Patient Advocate, like myself, can support you in navigating the healthcare system and coordinating care. I’ve always enjoyed the privilege of helping care-partner teams secure appropriate care options, organize essential documents and provide referrals to trusted resources. 

            Caregiver Support and Resources, LLC, has over 25 years of experience in life-care planning and is here to guide you with a compassionate and caring hand through each step of the care journey. Contact me here and let’s get to know each other!

            what is a Patient Advocate?

            What is a Patient Advocate? Your Guide To Amazing Elder Care

              By Maureen Rulison
              Caregiver Support and Resources, LLC

              Caring for our aging loved ones should be easy in theory, right? We love Mom. We love our sister. We love our husband. We love whomever requires excellent care in the twilight of life. 

              But it’s so complicated – even draining and frustrating – in practice. That’s because you’re navigating complex and ever-changing health care landscapes, financial and legal realities, living environments, and senior care resources that always seem out of reach. You need a guide.

              What is a Patient Advocate? Well, I am! A Patient Advocate is someone who cares with a roadmap to travel the peaks and valleys of life’s journey. Just as importantly, elder care professionals like me know where to uncover community resources and how to coordinate quality medical care. 

              A Patient Advocate is Your Guide to a Life Worth Living

              Aging and dying. To be blunt, it’s something we’re all destined to do. To be more blunt, life’s most trying test for the individual and the care-partner team – whether your loved one is aging in good health or facing a terminal illness.

              The number of professionals and agencies involved in their care increases significantly. The roles grow more intense and immersive for close family members and friends. 

              A board-certified Patient Advocate leaves no stone unturned in coordinating care, love and support. Let’s explore how I can assist you in ensuring a life worth living.

              Building a Web of Support

              I call this building the care-partner team. At the heart of Patient Advocacy is the recognition that care is a collaborative effort. 

              Rather than using the term “caregiver,” we emphasize the importance of person-centered (or person-focused) language. So everyone, including the individual at the center of care, are referred to as “care partners.” No one is relegated to a specific title that implies being in a position of weakness or power. The care recipient is empowered to direct their own care. Primary and secondary care partners are dignified and truly appreciated for their supportive efforts.

              By fostering a team approach, we can ensure comprehensive support and quality care for your loved one.

              Medical Care Planning

              Just a second ago, I mentioned primary and secondary care partners. A Patient Advocate helps identify and coordinate all the individuals who play a role in assisting with care, including loved ones, friends, neighbors and professionals. Make no mistake, each is vital in distinct ways – from doctors and clinicians to spiritual advisors and care agencies.

              Patient Advocacy makes sense of complex health systems and ensures clear communication among a volume of providers. What good is one hand if the other doesn’t know what it’s doing? Even in this digital age, where communication is supposedly streamlined, there are blind spots. Professional communication failures are detrimental to care – or even deadly.

              A Patient Advocate helps clients understand different treatment options, seek second opinions, and ask relevant questions to the right professionals. From coordinating medical appointments to organizing important health care documents, we bridge communication gaps and usher care-partner teams to informed decisions.

              Medicaid & VA Planning

              Navigating finances is overwhelming, especially when faced with the high costs of long-term care. As a Patient Advocate with expertise in Medicaid and VA planning, I help care-partner teams to understand and maintain eligibility requirements, protecting assets for today and tomorrow. 

              By exploring financial options and providing guidance, a Patient Advocate ensures your loved one receives the necessary care without facing needless financial hardship.

              Education & Connection

              The more you know. As care partners, we can’t tap community resources or areas of expertise without first knowing they exist. One of my most powerful (and fulfilling) roles as a Patient Advocate is to educate about processes, responsibilities and care options. 

              Whether you are researching long-term care requirements or need immediate guidance after a diagnosis, an experienced Patient Advocate provides the information, guidance and connection to community resources needed for care that fits your needs. Additionally, Patient Advocates maintain a network of partnering organizations, allowing us to refer you to a variety of helpful resources.

              Living Transitions

              OK, so full disclosure, the majority of our Patient Advocacy clients aim to stay at home as long as feasible. But reality looms. More than one-third of American adults will reside in an assisted-living or nursing facility when care becomes too difficult to deliver at home. 

              It’s natural. It’s necessary. 

              But transitions in living arrangements can be challenging for both the individual and care partners. A Patient Advocate assists care-partner teams in navigating the logistics and paperwork associated with moving – whether you’re simply downsizing to senior living or upgrading to memory care. We help all aspects of adjusting to assisted-living facilities, nursing homes or hospice care, as well. From real estate transactions to asset management and continuity of care, I’m always providing support for a smooth and well-planned process.

              We Are Ready to Be Your Board-Certified Patient Advocate

              As a board-certified Patient Advocate in the State of Florida, I am dedicated to assisting care-partner teams in every step of the care journey. 

              It’s a journey toward well-rounded, comprehensive care for a life worth living.

              By partnering with Caregiver Support and Resources, you gain a trusted ally who will empower you to make informed decisions and provide the best possible care for your loved one’s all-around well-being. Start planning for Patient Advocacy today and rest assured needs will be met for EVERYONE involved..

              local caregiver support services

              Community Resources: A Guide to Local Caregiver Support Services

                By Maureen Rulison
                Caregiver Support and Resources, LLC

                As care partners, we understand that providing great elder care should be a collaborative effort. It does take a village – especially as our loved ones approach life’s end stages. Local caregiver support services can shoulder pretty much any burden. So here’s a guide to what you should look for while building a great life-care plan. 

                In over 25 years as a professional life-care planner, I’ve embraced as allies many agencies and fellow professionals who serve critical roles in the continuum of care. While care partnering often starts at home, many communities offer a wealth of resources to meet the diverse needs of our loved ones. 

                Let’s explore some local caregiver support services I hold dear in the Tampa/Clearwater, FL areas. 

                Local Caregiver Support Services & Resources in Greater Tampa, FL

                I’ve directly worked with or provided referrals to many of these services for years. They’re not only colleagues, but also friends. They genuinely care. They’re experts who are committed to guiding with grace and compassion.

                These services include: 

                • Home Care
                • Respite Care
                • Domestic Services 
                • Hospice 
                • Counseling
                • Spiritual Care 
                • Living Transitions & Real Estate
                • Legal & Estate Planning
                • Life-Care Planning

                Let’s alleviate some of your burdens. Getting help only improves the quality of care we provide.

                Home Care

                Professional agencies specializing in home care and medical assistance provide many services to support caregivers. I recommend my friends at Bayshore Home Care, which mobilizes a team of care professionals to assist individuals and families.

                Home care services may include (but aren’t limited to) personal care, medication management, meal preparation, cleaning and transportation. And sometimes companionship alone is the perfect medicine. Home care professionals offer expert assistance tailored to your loved one’s specific needs, allowing peace of mind while attending to other responsibilities or addressing your self care via a much-needed break.

                Respite Care

                Speaking of taking a break, caring for a loved one is physically and emotionally demanding. I know from both personal and professional experience that being a care partner is the most stressful job out there. 

                Respite care provides temporary relief to caregivers by offering short-term care for their loved ones while you take time to refill your cup. Whether it’s for a few hours, days or even a week or more, respite care services allow caregivers to rest, recharge and tend to their own well-being. Consider it as an adult day care that can be provided at a facility or at home. 

                Domestic Services 

                Sometimes we just need a little help around the house. You’re busy being a compassionate and dutiful care partner – planning outings, coordinating doctor appointments, sorting meds, etc. Day-to-day tasks like household chores and meal preparation consume loads of time and energy for care partners, many of whom feel most effective when they’re directly administering care and comfort to their loved one. 

                If you’re seeking local caregiver support services that tackle homemaking tasks, I recommend Seniors Helping Seniors.

                Hospice Care

                We always recommend considering hospice care and other end-of-life preparations early in the life-care planning process. As a loved one approaches death, so many needs and sobering realities come to the forefront more quickly than ever anticipated. Hospice delivers comfort care in a variety of ways – from severe pain management to grief counseling and spiritual guidance.

                Our friends at Empath Health provide everything needed in a hospice agency … and more.

                Counseling 

                Caring for an aging loved one arouses powerful emotions and challenges. This is true for care partners and care recipients alike. While most consider counseling as an end-of-life experience addressing grief. But counseling services offer support and guidance at every step in the care journey – for anyone and everyone involved. 

                Professional counselors experienced in caregiving can help navigate emotional complexities, provide coping strategies, and foster better communication within the care partner team. Having someone to talk to – to unload emotions and burdens – is always a great outlet.

                Spiritual Care

                In a similar vein, many individuals and care partner teams have deeply seated religious and spiritual convictions. The soul needs nourishment, and congregations and other local caregiver support services are happy to oblige. 

                Spiritual care provides comfort, solace and guidance to individuals and their caregivers, nurturing a sense of connection and support during good times and bad. It helps to make sense of deep existential questions and afterlife theories. Often overlooked in the continuum of care, it’s a vital resource for so many, regardless of faith affiliation or cultural background

                Living Transitions & Real Estate Services

                While many of us aim to live at home as long as possible, the reality is that more than one-third of American adults will reside in an assisted-living or nursing facility. That path often involves a series of downsizing moves, selling former homes and properties, and other living transitions and logistics. 

                Real estate services specializing in senior living can assist in finding appropriate housing options. Our friend Q the Realtor is the PERFECT guide to the most appropriate senior-living situations including independent living communities, assisted living facilities and memory care residences. 

                Our loved ones deserve to feel at home. Home At Last Senior Placement Services can help to secure ideal living situations, while also helping to navigate the complexities of healthcare and moving logistics that can be overwhelming for care partner teams. 

                Legal & Estate Planning

                Having legal and financial affairs in order is worth its weight in gold. Well, maybe not gold, but definitely worth its weight in avoiding uncertainty and protecting assets for future generations.

                But legal aspects of caregiving – such as advance care directives, power of attorney and estate planning – are almost always very complex. That’s where you need a great estate law firm like Peebles & Gracy. Experts like Andrew Gracy guide individuals and care partner teams through the legal processes and ensure all necessary documents are prepared to protect interests, wishes and well-being through end of life – and beyond.

                Life-Care Planning

                Last (but certainly not least), IT’S US! Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning. Consider us an intermediary between and among ALL OF THESE local caregiver support services. We prepare a holistic, overarching plan with a team-based approach that factors all needs for your loved one, you and other care partners.

                In addition, we provide Medicaid & VA eligibility planning, Board-certified Patient Advocacy, educational opportunities and other referral services.

                Let’s Find the Right Local Caregiver Support Services for Your Elder Care Needs

                Don’t navigate the caregiving journey alone! Utilize the caregiver support services and resources available in your community. I can attest from thousands of life-care planning clients, the extra support makes a life-altering difference in your care partner capacity and experience.

                By tapping into the community resources available in the Tampa and Clearwater, FL areas, caregivers can access a range of services that can enhance the care they provide and alleviate significant burdens. If you need help, contact me here and let’s chat about your needs!

                compassionate care partner

                Are You a Compassionate Care Partner? Tips for Being More Loving & Supportive

                  By Maureen Rulison
                  Caregiver Support and Resources, LLC

                  Being a care partner for an aging loved one is a noble yet challenging role that requires oodles of patience and understanding. Are you a compassionate care partner?

                  Caregiving can push beyond human limits. Compassion can be hard to find. Self-doubt is common. Unchecked, emotions can sour into resentment. 

                  As a care partner, you make a big difference for a loved one with diminished abilities to care for themselves. Some may be able to live mostly independent lives. Others may require 24/7 management of daily activities like eating, taking meds and toileting.

                  Many caregivers mistakenly believe they – and only they – are willing or able to take on the role. (I’ve been there.) They think only if they’re sacrificing and suffering is the only way to be an effective caregiver. But by nurturing a compassionate and supportive environment for your loved one – and just as importantly, yourself – you improve quality of life for everyone! 

                  Want to Be a More Compassionate Care Partner? Ask Yourself These Questions

                  Some self-assessment is critical here. Let’s explore and figure out how we could become more compassionate care partners by being more loving and supportive and taking better care of ourselves.

                  1. Do You Practice Empathy?

                  Empathy is the foundation of compassionate caregiving. Put yourself in your loved one’s shoes and understand their needs, emotions and perspectives. They may call out in the middle of the night for a glass of water or help using the restroom. They may need your help getting to the doctor’s office when you have other plans. 

                  Do you empathize with those needs? Do you consider that they would give anything to care for themselves as they once did? Would you be embarrassed always needing help? That’s often how THEY feel. True empathy requires understanding. 

                  • Listen actively
                  • Show genuine concern
                  • Validate their emotions

                  Even a simple gesture of holding their hand or offering a comforting hug shows empathy and love.

                  2. Do You Communicate Well?

                  It’s amazing how effective communication remedies so many aspects of life. It helps with parenting, work, marriages – and elder caregiving. Communicating well as a care partner is crucial for a compassionate relationship. 

                  Do you speak a language of softness and understanding? Do you create a safe and non-judgmental space where your loved one feels comfortable expressing? Do you advocate for your own physical and emotional health? Are they encouraged to share their stories and memories and to participate meaningfully in conversations?

                  Regularly check in about their well-being and ask how you can best support them. 

                  3. Do You Learn & Adapt Well?

                  Most caregivers enter the role with little to no knowledge of elder caregiving, especially medical necessities. Even health professionals with vast expertise get stumped. Every individual is unique, and their needs evolve over time. Care best practices and conventional knowledge also evolve, too. By embracing continual learning and growth, we build our skills and provide the best possible care. 

                  Do you attend workshops, seminars or online courses related to elder care? Do you read books or articles to expand your knowledge base? What’s more compassionate than knowing how to care the right way?

                  4. Do You Seek Resources & Support?

                  Some of the worst caregivers think they must trek alone. There may be some legitimate reasons: protective instincts, caregiver guilt, financial issues, desiring privacy, etc. Some reasons border on paranoid or even narcissistic: sibling rivalry, unhealthy competition, fear of strangers, etc.

                  Do you seek (and accept) help? Do you recognize one person couldn’t possibly handle it all? Do you accept there are areas outside your comfort zone or areas of expertise? Overwhelmed caregivers care poorly – and some even make soulless decisions. Consult with healthcare professionals, social workers or elder care agencies for guidance and direct assistance.

                  5. Do You Respect Their Dignity & Independence?

                  As a care partner, it’s essential to honor your loved one’s dignity and independence. Even if it’s no longer safe for them to be driving or using the stairs, they’re still human and entitled to freedom and joy. 

                  Do you encourage their participation in decision-making? Do you offer choices whenever possible, whether it’s about daily routines, clothing preferences or leisure activities? Treat them with kindness, patience and respect. Recognize their individuality. If they don’t want to talk, don’t make them. If they can’t eat, don’t get angry and force them. If they desire space, provide a venue for alone time.

                  6. Do You Respect Your Own Dignity & Independence?

                  You’re also an individual. Maintaining your dignity means recognizing and valuing your own worth. Be kind to yourself. 

                  You’re not defined solely by your role as a caregiver but as a unique individual with your own desires, dreams and rights. Care recipients may indeed be demanding, condescending or even mean. They’re humans with their own moral compass, right or wrong. 

                  But do you maintain control over your own decision-making, even amidst the challenges of caregiving? If not, you have the right to discuss changes. 

                  7. Do You Prioritize Self-Care?

                  Similarly, respecting your own dignity and independence as a care partner isn’t selfish. It’s a necessary act of self-care. To be a compassionate caregiver, you must prioritize your own well-being. If you’re not well yourself, you can’t care for anyone! 

                  Do you take care of yourself physically, emotionally and mentally? Do you take time to refill your cup? Do you engage in activities that bring you joy and relaxation? You HAVE TO carve out that time for yourself, even if it’s just to walk for fresh air or listen to music while cooking.

                  8. Do You Practice Mindfulness?

                  Mindfulness helps you stay present in the caregiving journey. Take a moment each day to be fully present with your loved one and with yourself, without distractions. 

                  Do you practice deep breathing, meditation or other mindfulness techniques to center yourself and reduce stress? Being mindful allows you to appreciate the precious moments you share with your loved one and respond with kindness and compassion.

                  Become a More Compassionate & Loving Care Partner Today

                  Your commitment to your loved one’s well-being has a profound impact on the twilight of your loved one’s life. Embrace the opportunity to be a source of love, comfort and support. While caregiving is a journey that requires compassion, empathy and resilience, caregiving mustn’t come at the expense of your own independence and well-being. Half of being a compassionate care partner is being compassionate for yourself!

                  Caregiver Support and Resources, LLC is here to help! We have over 25 years of experience with all aspects of life-care planning and can help you and your loved one build a plan that honors everyone’s wishes and needs.

                  therapy pets animal-assisted care

                  Therapy Pets: Counting the Benefits & Blessings of Animal-Assisted Care

                    By Maureen Rulison
                    Caregiver Support and Resources, LLC

                    There’s just something about owning an animal. It’s a responsibility, but pets bring so much life, light and love to environments that need it most. Animal-assisted care can be a great source of comfort and support for elders in good health and end-of-life patients alike. 

                    A well-trained service animal can serve as watchful eyes, a helpful assistant, calming presence and even a lifesaver. They’re becoming increasingly recognized as a valuable addition to the aging process and even dying with dignity. 

                    Studies have shown that animals can help reduce anxiety, depression and isolation in our beloved elders, while also providing a sense of purpose and connection to the world.

                    Animal-Assisted Care Can Help Loved Ones From Aging Gracefully Through End of Life

                    You may not think of a therapy pet being very helpful in life’s end stages. Your mental picture of someone dying – perhaps surrounded by family after a lengthy battle with cancer – probably doesn’t include a dog or cat.

                    That’s because you’re only thinking of end-of-life care as those final days. (Although, I’ve witnessed many times a dying individual feeling quite comforted by stroking the soft ear of a beloved pet.) But end-of-life isn’t just the “active” dying process. The weeks and months leading up to the end can actually be quite joyous and purposeful alongside a furry friend.  

                    Animal-assisted therapy involves the use of specially trained animals, typically dogs or cats, to provide comfort, support and companionship to individuals approaching the end in various health care settings. They’re trained to respond to cues from their handlers and are carefully selected for their friendly and gentle temperaments. They can assist patients in hospice care facilities, hospitals or even in their own homes.

                    Some of the benefits of animal-assisted therapy in the aging process and end-of-life care include:

                    1. Reduced Anxiety & Depression

                    Animals have been shown to reduce anxiety and depression in our aging loved ones, helping them feel more relaxed and at ease. This can be particularly beneficial for hospice patients who are experiencing pain, discomfort and emotional unrest. Studies have shown that the presence of an animal alone releases stress-reducing hormones in the brain.

                    A great therapy pet, where permitted, can make assisted living feel more like home.

                    2. Improved Mood & Emotional Well-Being

                    Spending time with animals goes a step further to even improve mood and other feelings of well-being. Aging in good health or bad is emotionally straining. It’s common to feel we aren’t “ready to go,” which can come with emotions ranging from deep sorrow to anger. Therapy pets help our aging loved ones feel generally more upbeat and engaged with the world around them. 

                    3. Emergency Assistance 

                    Service animals also play a vital role in emergency situations. In a medical emergency, a service animal can alert medical professionals or even call for help. You might even consider them a first responder of sorts. They can provide physical assistance to their owner, such as pressing the LifeAlert button, guiding them to safety or helping to navigate obstacles. 

                    Additionally, therapy pets can provide comfort during highly stressful situations like natural disasters or traumatic events. 

                    4. Enhanced Sense of Purpose

                    Caring for an animal can add meaning to life, helping our elders and even hospice patients to feel more connected. While your loved one is still mobile and aware, they may find purpose in minor chores like feeding and walking. Animal-assisted care can be particularly important for loved ones who feel they’ve lost their sense of purpose or identity.

                    5. Increased Socialization

                    Animals can be a catalyst for social interaction for our aging loved ones. Aging loved ones can feel lonely and isolated, even with family and friends coming around frequently. But taking a dog for a walk or sitting out in the sun petting a cat can improve mood enough to stir the desire to socialize with friends, neighbors and passersby.

                    6. Comfort & Companionship

                    A therapy pet doesn’t need to be a highly trained former police or military service animal to be effective. Sometimes their presence alone is a job well done. As with the reasons mentioned above, helping your loved one feel well is the ultimate goal – especially approaching end of life.  

                    Perhaps most importantly, animals can provide companionship to individuals along the aging journey – and all its ups, downs, twists and turns. Animal-assisted therapy is a source of unconditional love and support, providing elders with an ever-present sense of warmth and comfort.

                    7. Support for Care Partners

                    Animal-assisted therapy can also benefit family members and close friends who form your loved one’s care-partner team. It can help to reduce caregiver stress and burnout, and can provide a sense of connection and support to care partners struggling to cope with the challenges of elder care and the end-of-life transition.

                    Animal-Assisted Care: A Great Option for Everyone’s Health & Well-Being

                    If you are interested in incorporating animal-assisted therapy into your loved one’s end-of-life care, let’s make sure that’s an important element of their well-rounded life-care plan. Speak with your loved one’s health care provider or hospice care team. They can provide guidance and resources to help find a qualified animal therapy provider in your area. Or perhaps there’s already a longtime family pet that needs to be present, wherever your loved one resides.

                    With the help of a therapy animal, you can provide your loved one with the comfort, support, and companionship they need during this difficult time. As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. Caregiver Support and Resources, LLC can help you with this and other processes from beginning to end.

                    choosing the right hospice care provider

                    9 Things to Look for When Choosing a Hospice Care Provider

                    ,

                      By Maureen Rulison
                      Caregiver Support and Resources

                      Hospice care isn’t a choice to make lightly. (That’s why, as always, I sincerely hope you and your loved ones are having the conversation early.) Choosing a hospice care provider – to serve the final steps in the aging process – should be an upfront consideration.

                      Why?

                      Well, there’s a lot at stake. That includes not only your aging loved one’s comfort during the often painful dying process, but also the well-being of everyone on the care partner team. Find a provider who not only offers high-quality medical care, and also compassion and support for both your loved one and your family. 

                      Do your research! 

                      • Some hospice agencies may not have as stellar of credentials or a track record of excellent care. 
                      • Some may or may not be able to mobilize quickly when things take “a turn for the worst.” 
                      • Some may specialize in in-facility care, while others are much better with at-home care.
                      • Some may better accommodate faith-led or cultural care.

                      A Beginner’s Guide to Choosing a Hospice Care Provider

                      As you can see, choosing the right hospice care provider for your loved one can be a difficult decision for a variety of reasons. Let’s make the right choice.

                      1. Research & Compare Hospice Providers

                      Choosing a hospice care provider should start with research. Before entrusting yours or your loved one’s end-of-life care, look for agencies with the proper accreditation and certification in your area. Here in Florida, agencies must first be certified by Medicare and/or Medicaid to cover costs and also by reputable organizations like The Joint Commission, the Community Health Accreditation Program (CHAP) and the Accreditation Commission for Health Care (ACHC). 

                      Certifications show that your chosen hospice care provider is qualified to deliver care and eligible to receive Medicare/Medicaid payments, which is often necessary to cover care costs and protect assets.

                      2. Consider the Hospice Provider’s Experience

                      It’s important to choose a hospice care provider with experience caring for patients with your loved one’s condition. Ask the provider how many patients they’ve cared for with similar conditions and what their outcomes have been. While the preferred outcome is a peaceful exit, the experience along the way – and afterward – can vary by agency.

                      Ask for references or read online reviews to get a sense of the provider’s reputation.

                      3. Assess Communication & Collaboration

                      Good communication and collaboration are essential between the hospice care provider, the patient, and the family/care partner team. The emphasis in health care these days is on person-centered care, which requires that the patient’s needs are met and that everyone is on the same page. You don’t want a hospice agency that tackles care on its own terms – especially when your loved one has very specific end-of-life wishes.

                      Ask about the provider’s communication policies and how they collaborate with the patient’s other health experts. 

                      4. Assess the Hospice Provider’s Staff

                      Hospice staff must be knowledgeable, compassionate and responsive to your loved one’s needs. Ask about the qualifications and training of the medical staff including doctors, nurses and other health care professionals involved in the end-of-life journey. Also ask about the provider’s counselors, social workers, chaplains, clergy and volunteers who may provide support from daily living to spiritual nourishment.

                      5. Consider the Provider’s Location

                      Location, location, location. It’s a valid factor in everything from real estate to estate planning. Choosing a hospice care provider near your loved one’s home makes it easier to deliver care – and for loved ones to participate actively. It can also make it easier for the provider to respond quickly in an emergency.

                      6. Look for Specialized Services

                      It’s not enough to simply provide comfort at end of life. Some hospice care providers offer specialized services, such as therapy involving music and art (even pets). These can provide additional comfort and support for your loved one and others involved in their care. 

                      Ask about these services and see if any the agency provides may align with your loved one’s interests and preferences. Look deeply at the programs offered. The best hospice care agencies offer a range of services including medical care, pain management, emotional and spiritual support, and care partner education and training. 

                      7. Know the Difference Between Hospice & Palliative Care

                      Your loved one’s prognosis is everything. A doctor will likely recommend hospice care when your loved one is in declining health and likely has 6 months or less to live. Now, this isn’t set in stone. Individuals may live on for months or even years with terminal illnesses. 

                      There’s a difference between hospice and palliative care, which both provide comfort in debilitating conditions. But palliative care provides similar services when your loved one’s condition could improve.

                      8. Review the Provider’s Policies 

                      It’s important to review the provider’s policies including their admission criteria, payment options, grief management and bereavement support. Understand the costs and fees and whether your loved one’s insurance will cover them. There may be significant cost differences for types of care delivered, location of services and other variables.

                      9. Trust Your Instincts

                      I always advocate for this. If your gut tells you a certain hospice care provider is the wrong choice, trust it. You should feel comfortable with the provider and confident that they will provide excellent care and support during this difficult time. If you have any doubts or concerns, don’t hesitate to ask questions or consider other providers.

                      Let’s Choose the Right Hospice Care Provider. Caregiver Support & Resources Can Help! 

                      Choosing the right hospice care provider for your loved one is among the most important decisions of the life-care planning process. It’s often difficult to discuss, but the conversation is INCREDIBLY important. With the right research and planning, you can find a provider who offers great care that’s right for everyone’s needs.

                      If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning and team building, including hospice referrals and patient advocacy for individuals with terminal illnesses like dementia and cancer. We’re happy to light the way.

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