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Pineapple Placements Caregiversupport and reources

Pineapple Placements

    Pineapple Placements is your local Florida gulf coast based FREE Senior Living Referral Company. From Independent Living, Assisted Living, Alzheimer’s/Dementia Care, Rehab Services, Skilled Nursing Care, Home Health, Hospice, and much more; our professional senior living care advisors are here to help you and your loved one navigate the next steps in your family’s senior living journey. We are here to provide our clients and their families with the education they need when searching for a new place to call home.

    Pineapple Placements, LLC
    P.O. Box 1761
    Tarpon Springs, FL 34688
    Telephone: (727) 460-3715
    E-mail: info@pineappleplacements.com

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    dementia memory loss

    Dementia is More Than Memory Loss

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      A few weeks back, Brian wrote here about his recent bout with aphasia. It was a living nightmare. And even though it lasted only a day, his ability to speak, to communicate, a part of his very being, was trapped indefinitely in a box. Could you imagine? You see, many people equate diseases like Brian’s Alzheimer’s and vascular dementia only with memory loss. But dementia is so much more than that.

      Brian is my life partner and care partner. We walk this dementia journey together. Sure, memory loss is a big part of it. I’ve witnessed his memories regress steadily through our years together, and our life-care plan involves a lot of daily reminders and motivations to help Brian do everything from managing his blog to showering to eating. 

      Those are just daily steps. Some days are good. Some are bad, but for more reasons than just memory loss. Different types of dementia and their various stages bring all sorts of conditions and emotional states. Mood swings. Hallucinations and other vision impairments. Communication difficulties. Disorientation with time and space. Inability to focus. Confusion. They all have a face and a name beyond forgetfulness.

      Symptoms of Dementia Beyond Memory Loss

      As dementia progresses to the mid- and late stages, changes in brain function and cognitive ability may become more pronounced and frequent. With Brian, one day may bring wild hallucinations while the next places him in a place he calls “the nothingness,” where a fog overcomes him and his sensory perceptions are almost nonexistent. 

      Here’s an explanation of some common symptoms persons living with dementia and their care partners experience:

      Emotional Changes

      People with dementia may often become moody and agitated. They often don’t know why. Sometimes, pure frustration causes their distress and anxiety. They may be upset they can’t express themselves clearly, recognize familiar faces and things, or complete a simple task. 

      Mood swings, a familiar calling card of Brian’s vascular dementia, may also have no understandable source. Irritability can be simply biological. Dementia in its essence is a systematic destruction of brain cells. When nerve cells misfire or disconnect in areas of the brain governing emotion, the emotional roller coaster begins a rapid journey of ups and downs beyond control.

      Hallucinations and Other Sensory Misperceptions

      Persons living with dementia may report seeing, hearing or feeling something that’s not there. They may see a face or a mysterious figure lurking in a dark shadow (insert feelings of paranoia here). They may even see or feel small critters crawling on or near them. Sometimes hallucinations could be random shapes or foggy areas clouding their vision. Your loved one may also report seeing people and pets from their past.

      Couple these visual misperceptions with sensory overload — perhaps the sound of whooshing branches in the wind or a microwave running in the next room — and your loved one could feel particularly anxious or paranoid.

      Again, hallucinations stem from damaged and misfiring neurons. But what they see and feel is very real to them. It’s important to acknowledge and validate their reports. Arguing that a hallucination doesn’t exist does nothing to quell fear and confusion. Sometimes calmly reorienting the conversation to focus on something else or a change of location (away from overwhelming stimuli) can bring your loved one back to reality.

      Inability to Focus

      For many individuals with dementia, focusing on a certain subject or task may be very difficult. Even in early stages, they may be unable to follow a recipe they know by heart, to focus on reading, or to finish a routine household chore. Did they mix in that ingredient? Did they already read that passage? Did they move over the laundry? Losing track of the steps can cause confusion and indecision that can hinder even the simplest of processes.

      In mid- to late stages, losing focus can affect every aspect of life. Your loved one may no longer be able to drive because they can’t focus on the road, traffic markers and familiar routes. They may need assistance with personal hygiene and other elements of self-care. Does memory loss have something to do with this? Yes, but dementia’s common regressions in attentiveness are a distinct neurological symptom. 

      Difficulty Communicating

      I earlier mentioned Brian’s aphasia. A common dementia-related illness, aphasia attacks one’s linguistic abilities like talking, writing or comprehending their own language. Brian’s longest battle with aphasia lasted six months — thankfully he has mastered his talk-to-text app and likes to argue through Alexa and Siri, but I digress.

      Communication difficulties associated with dementia may be more subtle. Your loved one may struggle with finding the right words or completing a sentence. Their thought train may be rolling without a hitch, but they then halt after “losing it.”  

      Thankfully, humans can communicate in a variety of ways. Eyes can point out things we want or need. Facial expressions can signal emotion quite powerfully. Persons living with dementia may even hum a tune or grunt to convey meaning. We, as care partners, must be patient, attentive and follow the clues our loved ones give.

      Disorientation and Poor Coordination

      Even the healthiest among us can become easily disoriented or clumsy, at times. Now imagine functioning with regressing brain function. Individuals with dementia often struggle to pinpoint their location in relation to nearby objects, from one room to the next, or most notably, from somewhere else to home. 

      Around the house, they may struggle with depth perception, increasing risks for both minor and major injuries from falls. As your loved one progresses through the stages of dementia, they may need assistance navigating an environment more tailored to their safety. Strong lighting and easy accessibility to things they need are helpful.

      Regressions in Reasoning and Judgment

      Dementia also attacks strong judgment and ability to reason toward logical conclusions. A person may no longer make good decisions about their own physical health and financial well-being. Often, their mind is active in a previous year — or decade — and may be operating under outdated thoughts and processes. Their judgment may be reckless or dangerous, even in early stages, while operating a vehicle or watching a youngster. 

      As with any of these dementia symptoms, reasoning and judgment regressions require compassionate understanding and mindful monitoring. (Helpful hint: If you discuss building a good life-care plan with your elder early, you can prepare for care partners to help with important decision-making like banking and transportation.) 

      #WeAreDementiaStrong. We Can Help Plan for Dementia Beyond Memory Loss

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

      Meet The Team

        About Caregiver Support and Resources, LLC

        What Does a Patient Advocate Do?

        Caregiver Support & Resources, LLC specializes in patient advocacy, life-care planning, and Medicaid & VA planning for elders, as well as persons living with dementia, other terminal illnesses and disabilities. Knowledge is power! We are your one-stop shop for what you need to know about elder care and how to build and enact a plan for a life worth living.

        Maureen Rulison, CDMCP, is a Board-certified Patient Advocate in the State of Florida.

        Her services to clients in the Tampa Bay, Clearwater and St. Petersburg, FL areas prepare families for care needs. She also coordinates a variety of resources that may be needed as a loved one enters home care, assisted living and nursing facilities, and end-of-life care.

        Decisions are never easy.

        Maureen provides a personal, caring and compassionate touch to each step of the care-partner journey. Why? Because she’s a care partner herself. With her life partner/care partner, Brian LeBlanc, who lives with Alzheimer’s disease and vascular dementia, Maureen has built their own life-care plans to account for any need along their journey together. How’s that for experience?

        Maureen Rulison

        Maureen Rulison

        Learn More About Maureen
        Brian LeBlanc

        Brian LeBlanc

        Learn More About Brian

        Patient Advocacy

        Patient Advocacy

        Pre-Planning

        & Team Building

        Medicaid Planning

        (with Asset Protection)

        We Are #DementiaStrong

        Referrals

        Our Board-certified Patient Advocacy in the State of Florida works directly with clients to:

        • Help understanding of the financial impact of decisions including Medicaid and VA Aid & Attendance planning with asset protection.
        • Build care-partner teams including family and friends who can help clients follow treatments and medications, physical therapy, and nutritional recommendations. We create unique teams with loved ones and professionals who are experts in their field.
        • Help navigate through complex health care systems. We assist clients to coordinate care among many clinicians, settings and affiliated providers.
        • Empower our clients to ask questions by coaching which questions to ask of whom.
        • Ensure clients understand treatment options and who can deliver them (and to seek second and third opinions, when appropriate).
        • Coordinate and attend appointments with medical providers and other support services.
        • Address any safety concerns during transportation, doctor visits, home care, assisted care and daily life.
        • Assist understanding and coordination of discharge summaries.
        • Teach clients to use an organization technique (ex. – a planner, phone app, or 3-ring binder). We help clients to keep a file of all the current diagnoses and treatments when seeing multiple doctors, and to report these to each provider so they are aware of current, past or upcoming treatments. 
        • Ensure all consents are complete so providers have permission to communicate with each other and that the advocate can communicate on the client’s behalf, if necessary.
        • Communicate with the primary care physician what happens at each appointment with specialists, therapists, etc., as well as to create a list of all medications for each visit.
        • Ask for pharmacists to review medications for interactions any time a new medication is added or changed.
        • Learn if the health organization offers any case-management or care-coordination services that can help. (If within the same system, appointments could be coordinated so that the client can go to one appointment after another in the same place.)
        • Plan care transitions to ensure continuity of care, clarify the current state of the patient’s health and capabilities, and review medications when discharging (especially to a rehab facility or nursing home).
        • Empower clients by providing them with choices about transition strategies.
        • Develop straightforward plans for managing care in new settings.
        • Ensure care partners and other support persons receive the education they need to be successful.
        • Make arrangements to obtain needed medical equipment.
        • Find needed in-home supportive care.
        • Find and retain relevant community agencies and professionals.
        Schedule a Free Consultation

        grief management

        Grief Management When a Loved One Enters Hospice

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          Your elderly mother rests comfortably in her bed upstairs, while a gathering of family members sit crying in the living room downstairs. A hospice nurse has just made her first home visit and administered some medication to quell a nasty coughing fit. Mom’s terminal illness has progressed greatly in recent weeks, and it’s clear to everyone that it’s “the beginning of the end.” It’s time to begin thinking about grief management.

          The hospice nurse comes downstairs and rests his hand on your shoulder. Thanks to a well-considered life-care plan, he says, “You’ve made the right choice. Everyone will be fine.” You’ve built a great team of care partners — including experts from hospice and other medical professions — and your mother’s comfort is assured in her dying days. 

          So why don’t you and your family feel better? Why is it still so hard? That’s grief in a nutshell. It’s going to be hard. Saying goodbye is never easy. And coping with the impending sense of loss that’ll soon be reality. 

          Grief affects us all differently. Your sadness at the thought of losing your mom is different than your 12-year-old son’s at losing his Gram-Gram and different still from your father losing his wife. Thankfully, hospice agencies provide grief management and bereavement support to families before, during and after death.

          6 Common Hospice Grief Management and Bereavement Services

          Hospice is there to help not only your loved one as they say goodbye, but also you and yours as you navigate heartbreak and other complex emotions that surround loss. Here are a few things most hospice agencies will do or coordinate for grieving families.

          1. Individual and Family Support Counseling

          Sometimes it just helps to talk with a counselor, one-one-one or with your family. You can share feelings of sadness, loneliness, helplessness, guilt or even anger. You may also honor your loved one by sharing their life story: 

          • Raising a family
          • Good and bad memories
          • Accomplishments and failures
          • Life lessons

          Discussing your feelings in a safe environment can help you and your family to make sense of loss, cope with strong feelings and move on. 

          2. Grief Therapy Group Sessions

          Hospice agencies may refer families to group therapy resources. Group sessions can be helpful to discuss strong emotions with other individuals and families having similar feelings and experiences. They, too, likely feel deep sorrow at losing a dear loved one, regret for time lost or common family problems, and guilt or helplessness over not being able to provide expert care at home.

          There’s strength in numbers. It helps to know you’re not alone. (And as an added bonus, you can connect with others to lean on for support and move forward together.

          3. Supporting Young Loved Ones

          Children, adolescents and even younger adults can feel profound sadness after a loved one’s death. Most kids especially lack perspective and haven’t lived enough life to know that death is a part of it. They’re often very fond of an elder (who doesn’t love Grandma’s cookies or Grandpa’s secret stash of candies?). So they can’t understand why they’re sick, dying or on their way to “the Great Beyond.” What’s more, telling them that their loved one is in “a better place” does nothing to soothe extreme sadness seen through the eyes of a child.

          Hospice care agencies and direct support staff know this well. They’ve often helped hundreds or thousands of care recipients and families with grief management, directly or through referrals to helpful resources. Staff are trained to calmly counsel adults and children alike who feel sad that their loved one is in pain, dying or deceased. Hospice may also provide or refer respite care for families who need help in attending to youngsters during trying moments.  

          4. Getting Through the Holidays

          The first holidays after a loved one’s passing are often the toughest. As elders die, oftentimes, long standing family traditions go with them. Your great uncle’s Thanksgiving dinner, Grandpa’s Christmas party or sister’s annual Easter Egg hunt will no longer happen, unless someone takes up the reins to continue or create new memories. But if nothing else, their empty seat at the dinner table can be very unsettling. 

          There’s an emptiness in your hearts. Hospice agencies often continue to provide grief management, support and resources for many months after an elder’s passing. This may come as direct outreach during sensitive times (staff assigned to your care often document birthdays and other special occasions) or through periodic mailings of heartfelt messages or educational material on the grieving process.   

          5. Religion & Faith

          Millions of Americans take their religion and faith very seriously. Many others simply expect their elder’s end-of-life care and final arrangements to align with their faith and traditions. 

          Some hospice care recipients and families have strict codes about meals and medications that may be administered. Some have wishes for final services, perhaps a living wake or celebration of life. Hospice will coordinate a certain religious or lay leader to officiate a service and/or administer last rites. There’s something truly comforting about professionals handling and coordinating care and arrangements with deep respect for your elder’s wishes. 

          6. Memorial Programs

          A hospice patient is not just a patient. They’re an individual with wonderful human qualities and dignity up to the very end. Hospice staff get to know your loved one on a very deep and emotional level. Some agencies honor their life and legacy with annual memorial programs recalling the individuals for whom they provided end-of-life care and comfort during the year. (A very popular one I recall is an annual Tree of Life celebration, during which the hospice organization provides holiday ornaments to families and invites them to place a special ornament on their tree and say some kind words of remembrance, if they wish.

          While your grief and sorrow may take years to subside, it’s nice when others remember your elder fondly and to know theirs was a life worth living.

          We Can Refer You to Hospice Grief Management and Bereavement Services

          Don’t wait too long to discuss various hospice services with your elder, loved ones and other care partners. Hospice is often an important (and necessary) step in end-of-life care. You’ll be happy your loved one can die in comfort and dignity — and that they’ll be there each step of the way with grief-management support and resources.

          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 such as dementia. We are happy to provide guide your process in a caring and compassionate way.

          caregiver stress

          5 Ways to Deal with Caregiver Stress

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            You stare into the bathroom mirror with your aging mother in the next room calling for breakfast. You don’t like the reflection you see. You’re tired, on edge, and you need to eat, too. You’ve barely had the chance to put in some dry shampoo and brush your hair. You’re feeling caregiver stress … and it’s not even 9 a.m. Monday.

            Don’t worry. It’s natural. Caregiving (or care partnering, as we prefer to call it) is a labor of love. It’s hard — very hard. You know this too well. How many times have you taken a deep breath and trudged forward? No matter how exhausted you are. No matter how often self-care and family tasks take a backseat. No matter how you feel that day.

            How to Cope with Caregiver Stress

            An overwhelming number of care partners experience stress, physical and emotional decline, and worse as a result of their responsibilities. According to studies:

            • 10% of primary care partners report bodily stress, overexertion and even injury from physical tasks
            • Nearly half have chronic health conditions
            • Nearly three-quarters have missed regular medical appointments
            • 58% have worse eating habits than prior to beginning care-partner tasks

            Believe me, I know. Caregiver stress in good moments and bad accompanies every daily decision, just around every corner, waiting to overwhelm you steadily over time or without notice. No, you don’t love your loved one any less. You go great lengths because you care deeply enough to walk this journey alongside them. 

            Here are some ways to cope with caregiver stress to be happy and healthy yourself along the care-partner path.

            1. Build a Life-Care Plan

            Care partnering without a plan can lead to confusion, aggravation and, at times, poor care outcomes. Whether they’re an elder with advanced-stage cancer or a spouse with early onset dementia, a great life-care plan prepares you and your loved one for the days, months and years ahead. Ideally, you would build a care-partner team including everyone from immediate family to medical professionals.

            A life-care plan establishes who does what and when. Most importantly, it ensures the elder maintains control over decisions as long as reasonable or responsible. It lays out, in detail:

            A life-care plan may include details from who does laundry and meals and who executes medical power of attorney and even when your loved one wants to sit on the patio to watch the sunset. It’s a living, breathing document that can be changed at any time alongside evolving realities. A well-considered plan reduces caregiver stress by listing responsibilities while eliminating ambiguity and potential conflict.

            2. Do Your Best

            You’re not superhuman, although it may feel as if everyone expects you to be.  You’re not alone in feeling you have the world on your shoulders — even if you can consistently rely upon a care-partner team to pitch in. 

            There will be days you’re not your best. You may forget an appointment or leave the roast in the oven a few minutes too long. There may even be days when your care partners are less than appreciative of the effort (or an elder is incapable of expressing gratitude due to a medical condition). 

            That’s OK. You know what it takes to help your loved one — and to take the reins, when appropriate. (Helpful hint: Every day is a new day to make a positive impact.)  

            3. Accept (and Ask For) Help

            According to Pew Research, there are 40.4 million unpaid caregivers in the United States. Each selflessly devotes themselves to their loved one’s needs, taking time off work, away from things they love, often disregarding their own health needs without a dime in return. What’s more, Pew says 12% of parents of children 18 and under also provide unpaid care to an elder — or two!

            You could cut the care-partner tension with a knife. Women disproportionately carry most of these responsibilities, and as you likely know, when it comes to caring for your own children or aging parent, no one can do it better than you.  

            That may be true, and it may be hard to surrender control of primary care-partner tasks. But formal and informal respite care can give you a much-needed break. You may hire a respite care agency to provide home care including:

            • Home chores
            • Medical care
            • Meals
            • Transportation
            • Companionship (or supervision, if necessary)

            An informal respite scenario could involve contacting another in the care-partner team, or a relative or close friend, to stop by briefly so you can leave to run errands, get some fresh air or socialize. Care partners commonly report feelings of isolation and guilt. But I can’t emphasize this strongly enough: You’re allowed to take a break!

            4. Prioritize Your Health & Well-Being

            Along similar lines, care partners experiencing stress and burnout often deprioritize their own physical and emotional well-being. We often feel too busy attending to our loved one’s care needs that we forget (or abandon) efforts at self-care like:

            • Eating healthy
            • Exercising
            • Taking medications as prescribed
            • Attending regular doctor appointments
            • Taking mental-health breaks

            Some care partners even actively turn to damaging habits like drinking and substance abuse to numb the pain or “manufacture” energy. Don’t deprioritize your own health needs. Get yourself on a schedule to take meds, eat healthy, exercise and visit your doctor. It may not feel like it, but as mentioned above, there are always others who can step in as you walk away briefly for yourself. 

            Socialization and movement are key to good health — both physically and mentally. Visit a friend, grab a drink, take a walk, meditate. Anything to stay connected and mindful to yourself, those you love outside the care-partner relationship, and the rest of the world. 

            5. Accept the Inevitable

            Your loved one will die. It’s a fact of life, no matter how many thousands of hours you spend feeding, bathing, talking with, reading to, providing meds, driving to and from appointments, or simply sitting and enjoying each other’s company. 

            Sometimes primary care-partners and teams can provide enough quality care to extend an elder’s good times for many years. But even the best care and companionship can’t stop the onslaught of terminal conditions like Alzheimer’s disease or congestive heart failure. Accept the inevitable and focus on the positives — that you care deeply and you are doing everything possible to provide comfort and stability for your loved one and any other care partners.

            Dealing with Caregiver Stress Takes Self Care and Preparation

            There’s no secret formula for being a great care partner for an elder loved one. Caregiver stress and burnout happens to anyone who spends a significant amount of time prioritizing another’s needs. There’s no shame in that, and there are numerous resources out there to balance responsibilities with personal needs. 

            Planning ahead and preparing is key to handling both predictable and unpredictable. Have these conversations early with your loved one to avoid stress and uncertainty later.  

            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, as well as Medicaid planning (with asset protection) and patient advocacy for individuals with terminal illnesses such as dementia. We are happy to provide referrals and guide the process in a caring and compassionate way.

            Living with aphasia and dementia

            Aphasia: ‘I Couldn’t Speak and I was Terrified’

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              I woke up Saturday morning just like any other day. Maureen, my life partner/care partner, was up before me, of course, as she moves like a lightning bolt and I take my sweet time. The gentle waves of Tampa Bay just outside our bedroom window glistened in the morning sunlight. So relaxing and peaceful, a wonderful way to wake up and prepare my mind for the daily grind of functioning and remembering. 

              I said something brief to Maureen — although I’m a bit foggy and can’t remembering what it was. I sat up and … nothing. I couldn’t speak. I could think. I had my inner monologue. I could mouth the words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence. Frightening silence. Another attack of aphasia â€” thankfully a relatively infrequent consequence of my Alzheimer’s disease and vascular dementia — had robbed me of my ability to communicate verbally.

              What is Aphasia? And How Does it Affect People Diagnosed with Dementia?

              I looked to Maureen in panic. She could see by my eyes I was terrified. We were scheduled to do a Facebook Live conversation for WeAre#DementiaStrong that morning. But that hardly mattered at all. She promptly and politely canceled the event with a nice post explaining that I wasn’t feeling “well.” 

              Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done. 

              Oh yeah, did I mention I’ve had several bouts with aphasia before? It’s often a dementia-related illness or stemming from a stroke or traumatic brain injury. In my case, the Alzheimer’s and vascular dementia slowly stealing my memories also causes global aphasia to sap my ability to speak. For some, aphasia symptoms may include a total or partial inability to write or understand language. Some say words in the wrong order; others say sentences comprehensible only to themselves.

              My aphasia causes a complete loss of speech. No words can escape my lips, whatsoever. I may be able to mouth some words, but I rely mostly on gesturing and a text-to-speech app that allows me to communicate. I often laugh, wishing Maureen could just read my mind, but I can’t even read my own mind most days. In the meantime, my girlfriends Alexa and Siri can speak for me, much to Maureen’s playful chagrin. It’s sometimes funny to have the app speak for me in a British accent or a woman’s voice.

              But whatever fleeting joy joking around with apps may bring, the sad reality of aphasia is not fleeting at all. A few years ago — I hardly remember this — I was unable to speak for six months. Another incident lasted three or four days.

              The Uncertainty of Aphasia: When Will It End?

              There’s no answer to that question. When will it end? Will it end at all? I’ve entered each attack of aphasia facing the reality that whatever I said the moment or night before could be the last words I ever say. Maureen later told me, “The first thought that went through my head: ‘What if the last thing I ever hear you say is what you just said to me.” 

              Maureen went to the office and cried. Even as an expert in dementia care and life-care planning who walks the walk in professional and personal shoes, the random, uncontrollable and sometimes cruel effects of dementia are a lot to handle. “I was like  ‘I can’t deal with this. I just can’t deal with this,'” she said. “I have plans in place if I couldn’t leave you alone at any point. I just wasn’t ready to put them into action.” I understand better than most that dementia is incredibly difficult for both the diagnosed person and their care partners. 

              I must say, she does a fantastic job as my care partner. She knows exactly what to do not just to keep me happy or distracted, but to address dementia symptoms and provide holistic relief. She’s a saint for taking my hand and leading me out of the fog and darkness, time and again.

              Bringing Out My Voice Again

              Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.

              Music is the perfect therapy tool. We remember music. We remember art. They realign and reset minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800 songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs. (On that note, Maureen and I are proud to serve on the Board of Thriving4Life, a nonprofit that promotes clinical art therapy and personalized music for elders and individuals with dementia).

              Music works. I hear the melodies and beats and lyrics. I feel the emotion. It’s soothing, and it brings me back to reality. But that’s not what brought back my ability to speak.

              We made the day as normal as possible. I watched TV. We went to the store. We even had a little argument, as couples often do. Expertly using my text-to-speech app, I’m sure I won (but don’t tell Maureen that).

              Later, we sat together on the back patio, overlooking Tampa Bay as the sun began to set. I snapped a great picture of some dolphins. I stood up and tripped, yelling a certain four-letter word on the way down. 

              “#&*@!” 

              I spoke! Maureen didn’t even check to see if I was OK from the fall. “You talked! You spoke!” she exclaimed. Thankfully, this round of aphasia lasted less than 24 hours. I’m not sure if it was the shock of tripping, but something about the experience hit me like a lightning bolt. 

              Since that first time, I’ve always tried to speak first thing in the morning after regaining the ability to speak. That’s my test. That fear never loosens its grip now.

              Communicating with Aphasia and Dementia

              Last week, Maureen wrote a terrific blog about communicating with loved ones in certain stages of dementia. Coincidentally, we ended up living the extreme of that reality, however briefly, that very weekend.

              “Trust me, Brian LeBlanc will always try to find a way to communicate,” Maureen said. And she’s right. Communication is my life. It’s who I was before dementia as a marketing and PR professional. It’s still who I am now. 

              Thankfully, I’m always prepared to use gestures, facial expressions (and, of course, my beautiful girls Siri and Alexa) to speak for me when speechless moments like these become more frequent … or permanent. Later that night, Maureen and I were talking and she said, ‘You know, I kind of wish you didn’t talk anymore.’ We had a good laugh at that. As I’ve said since being diagnosed with Alzheimer’s Disease in 2014, “I have Alzheimer’s, but it doesn’t have me!”

              women-2300105_1280-830x623-1

              Dementia Communication Strategies: Talking When Talking Doesn’t Work

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                Brian needed to say something. Something simple. He struggled.

                It made me sad. I’m used to it. So is he. We’re prepared for this. But as experts in dementia care — him living it and me helping many care-partner teams who contend with it daily — even we battle with daily trials.

                My life partner, Brian, is the smartest man I know. All he wanted to describe was something in the shape of a triangle. A young child could point it out, but at that moment he just couldn’t find the word. It was right there. I could see it in his eyes. He grew aggravated by the second. Finally, he threw his hands up to form the right shape.

                “Triangle! Yes, triangle! Of course, sweetheart.”

                A man with years of experience in on-air marketing had found a way to convey his message. Make no mistake, a few moments later the legend himself could dictate a business and marketing plan in its entirety and point to several helpful resources. But he couldn’t then. He was understandably upset. 

                Communication Strategies for People with Dementia

                Dementia has no hard-and-fast rules. Communication strategies for some people with dementia won’t work for others. With certain types of dementia, memory regression and communication difficulties may present quickly. Or it might take years to notice significant declines in verbal communication aspects like vocabulary, articulation, retention, cadence, and even tone and volume. In addition to difficulty finding the right words, individuals with dementia may:

                • Repeat words, phrases and full stories
                • Lose their train of thought
                • Describe rather than name familiar objects
                • Use physical gestures
                • Struggle with logic and order
                • Avoid speaking entirely

                Alzheimer’s Disease and other forms of dementia generally progress in stages like most other diseases. Here are some great communication strategies.

                Early Stage Dementia

                In the early stages, you may not notice significant declines in your loved one’s ability to communicate. You might spot some early signs of diminishing capacities. But don’t worry! They can still enjoy meaningful conversations and relationships for years to come. They’ll just need a little more help and understanding.

                • Give time to respond as they try to find the right words and phrases
                • Speak clearly and directly to the individual
                • Communicate on their terms (in-person, video chat, phone calls, etc.)
                • Don’t interrupt unless you’re asked for help

                So much of communication in the early stage requires dignity and consideration. Your elder is likely very aware they’re having difficulties. While it may seem easy to pass these off as “senior moments,” your loved one is probably scared, self-conscious or even embarrassed when they can’t remember a name or what someone told them moments earlier.

                Your love, support and honesty is becoming more important than ever. (Helpful hint: Humor helps. Laugh with your loved one, when appropriate. It’ll be easier to talk after sharing a good chuckle over forgetting something silly.)

                Middle Stage Dementia

                By this stage, the effects of dementia have grown more pronounced. Remembering names can be difficult. Many with diagnoses of Alzheimer’s or other forms of dementia often misplace the names of grandchildren with the names of their own children or close family from earlier in life. Memories typically regress in reverse chronological order. They’re sometimes “mentally present” in a previous decade. 

                Maintaining a train of thought in conversation to a logical end point is often quite difficult — with far fewer moments of clarity. They need help understanding your meaning and conveying theirs.

                • Speak slowly and clearly, and maintain eye contact
                • Present one topic or one question at a time (easy “yes” or “no” questions that require minimal decision making are best)
                • Find a quiet place to converse one-on-one without distraction
                • Enhance your words with visual cues to aid comprehension
                • Avoid correcting or arguing (their mind may not be present and capable of speaking truthfully or accurately)

                Middle stage dementia may last years. Prepare these easy communication aids to present options or walk your elder through daily tasks on “foggy” days.

                Late Stage Dementia

                Verbal communication may become impossible as dementia progresses to its final stage. But rest assured, there’s still a loving soul behind those eyes and they have plenty to say — if you pay attention. They may communicate with their eyes, facial expressions, gestures and sounds.

                • Face the person so they may first see a friendly smile (it helps to identify yourself to begin each new interaction)
                • Understand the feeling behind sounds and intonations (a grunt might signal anger or discomfort while light humming might indicate happiness or contentment)
                • Use pointing and gestures to indicate meaning and direction (pointing outside could mean they wish to go for a walk)

                A care-partner team may be present 24 hours a day for a loved one with late-stage dementia. It’s important everyone understands the importance of emotions and senses in conveying a message.

                Above all, people with diagnoses of Alzheimer’s and dementia must be treated with dignity. They have lots to say with lots of love to give — and it’s not their fault they struggle to express it. Moments of silence are OK. Your loving presence is often enough.

                #WeAreDementiaStrong. How Can We Help? 

                We’re walking this dementia journey with you and your loved one. We experience many of the same things. We sometimes struggle just like you. Researching and planning effective dementia communication strategies can go a long way.

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

                golden years

                Enjoying the Golden Years with Our Loved Ones

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                  The clear lake water laps gently against the dock where you and your father stand in silence. He gazes across the water toward the setting sun. He appears deep in thought. “A beautiful, golden sunset to kick off my golden years,” he says.

                  You smile. It’s a moment out of a Robert Frost poem. “Nature’s first green is gold, her hardest hue to hold,” you recite from memory. Dad smiles back. Everything in life has led to this exact moment, and now, in his first day of retirement, the family can begin focusing on enjoying the golden years together. You feel at peace. 

                  Sounds almost too perfect to be true, right? OK, so you may not have an iconic lake scene from a movie to usher your elders into retirement. But the feeling is genuine, and there are ways to help your elder live each day with meaning and purpose. 

                  Here are Some Ways for Everybody to Enjoy Your Elder’s Golden Years

                  Steps come with responsibility. It’s worth it for a life well lived and thoroughly enjoyed.  

                  Engage the Mind

                  Your loved one may have been a very busy person in their working years. Daily life, work, kids and everything else keeps the mind naturally active for many decades. You don’t even think about it, but a busy mind is almost constantly getting exercise. 

                  Then kids grow, retirement comes and suddenly the mind has so much less to keep it occupied. The brain is like a muscle. It gets weak without activity. Harvard Medical School recommends regular mental stimulation to prevent cognitive decline later in life. 

                  Find something stimulating your loved one likes to do. You could always build a puzzle together or even take up learning a musical instrument. Perhaps they already like to read, draw or paint. Encourage these activities as your elder grows older.  (And remember, natural cognitive and memory regressions with age aren’t always proof of dementia. Be vigilant, of course, and have fun promoting great brain function!)

                  Story Time

                  Many elders have gathered a lifetime of interesting stories. Often, they’ve raised children who are now raising children of their own. They’ve experienced career successes and failures. They’ve cherished love and endured loss. 

                  Elders tend to grow reminiscent in their golden years. Pleasant memories comfort everyone. They may even tell cautionary tales as teachable moments. Relish these opportunities to get to know their life’s journey — even if you’ve heard such stories a thousand times before. Honor their legacy by truly appreciating the narrative built upon lived experience.    

                  Build a Life Care Plan

                  Preparation is an important part of enjoying later years alongside your elder. Golden years aren’t always sunshine and rainbows. Your loved one and family face important decisions from managing declining health to complicated legal and financial issues.

                  Have early conversations involving:

                  • Care partners – Who will be included in certain tasks (cooking, cleaning, driving to doctor’s appointments, etc.) when your elder’s capacity for self-care diminishes? 
                  • Comfort care – Which resources will be mobilized to ease pain, discomfort and illness (hospice agencies, death doulas, etc.)? 
                  • Legal and finances – Are your loved one’s assets in order to be eligible for Medicaid and a long-term care facility? Who has power of attorney to execute decisions at end of life and beyond? Are life celebrations and other final arrangements finished?
                  • Home atmosphere – How will you create the most comfortable atmosphere at home or in assisted living? Do they have any musical, spiritual or other personal preferences?

                  It’s best to draft a life-care plan that stipulates how your elder wishes to live their final years, months, days and hours. Have these discussions early enough so everyone can discuss these realities calmly and rationally. Knowing these matters are decided, your elder and care-partner team can relax and enjoy many wonderful remaining memories to come. (Helpful hint: You can always revise a life-care plan to evolve alongside changing wishes and circumstances.) 

                  Connect (and Reconnect) 

                  Golden years are an opportune time to strengthen relationships. Elders may desire to connect more deeply with loved ones. Their hopes for quality time may include more rounds of golf, more trips to the movies, or simply holding hands at their bedside. Roughly one-third of American seniors feel lonely, potentially resulting in negative mental and physical health effects.

                  They could desire to reconnect with old friends and memories. They may even want to re-establish platonic friendships with old flames to mend wounds and learn to laugh again. 

                  Good Diet & Exercise

                  It’s never too late to start eating well and exercising. Good nutrition and activity can improve quality of life in the golden years. When possible, try to cook or influence healthy food decisions. Join your loved one on a short walk. Who doesn’t like getting out for some fresh air in great company?

                  Express Gratitude

                  Life is a beautiful gift. Celebrate it alongside your loved one at each stage, no matter how difficult it may be. Your loved one may still have many great years left to enjoy family dinners, kids’ soccer games and walks around the park. Or they may be quite sick with only a few days left.

                  Give thanks for the happy years they’ve lived and the love they’ve given family and friends. The golden years are more enjoyable while expressing gratitude for all of life’s blessings.

                  The Golden Years: The Last Piece of a Life Worth Living

                  The final stretch of life should be lived with joy and dignity. The golden years can bring many great memories and experiences. Your loved one and their care-partner team can enjoy them to the fullest with a little preparation and perspective.

                  If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning. Email info@caregiversupportandresources.com to set up a free consultation.

                  death doulas end of life

                  Death Doulas: Compassionate End of Life Care

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                    Death doulas deliver compassionate care at end of life. They’re non-medical professionals known by many names: death coaches, soul midwives, transition guides and end-of-life coaches, among others. Much like birthing doulas ensure care and support to families as babies say hello to the world, death doulas provide holistic care and comfort as elders say goodbye.

                    We expect the same honor and dignity in death as we do in life. Many elder care partners seek comfort care and support for their loved ones in their final days. They often turn to hospice care agencies to provide and coordinate a plethora of services to help the dying individual and their care-partner team.

                    But what exactly do death doulas do? Will hospice help to coordinate such services? Are they a good fit within your life care plan? For so many, the answer is yes.

                    Death Doulas in Your Life Care Plan

                    A death doula, much like a midwife during the days and weeks around the birthing process, attends to all aspects of care and support during the dying process. You may find a death doula holding a dying person’s hand, listening to family stories or even washing dishes so stressed care partners may rest.

                    Their loving care involves so much more before, during and after death.

                    Life Care Planning

                    You may choose to include a death doula in life care team building and planning. They are trained and often certified to serve numerous vital roles in administering and advising, among others:

                    • Pain management
                    • Daily responsibilities
                    • Spiritual care
                    • Emotional counseling
                    • Home environment
                    • Respite support
                    • Honorary services & burial

                    A death doula will work alongside hospice and other care partners to understand your individual needs. They may also help to educate the care-partner team about realities of the dying process. With greater understanding comes better planning.

                    Companionship

                    Most elders in their final days want someone at their side. It’s easy to understand this very natural human desire. The dying process, for many, includes lifelong self-reflection, flipping through a treasure trove of memories and experiences. They often like to tell these tales — good and bad, love and loss, children and grandchildren, school and career.

                    Death doulas may join family and friends in hearing hours of fascinating stories. They may also sit alone in silence with your loved one, both enjoying the pleasant simplicity of the other’s company. These moments of companionship, conversation and silent contemplation bring comfort to everyone involved.

                    Emotional Counseling & Spiritual Care

                    The dying process can be overwhelming and scary for everyone involved. A death doula is an expert at counseling and coordinating spiritual care of any denomination. 

                    A person at end of life may experience a spectrum of emotions from extreme agitation and sadness during pain to elation during a visit from close kin. Family and friends experience overwhelming grief for much of the dying process, often with very few happy moments or glimmers of hope. Religious and emotional counseling can make sense of intense emotions and allow everyone to say goodbye in peace and without regret.  

                    Respite Care

                    Everyone needs a break, a breather, some time to themselves or to run personal errands. That’s why you’re just as likely to spot a death doula at your elder’s bedside as running a vacuum in the living room. Doulas support you in any way necessary — whether watching children so adults may visit in peace or reading a book with your elder as you run to the store. 

                    Team Coordination

                    The dying person and their care partner team each have important roles to play. A brother may cook dinners while a daughter or niece may coordinate bath times or daily meds. The death doula can be a traffic signal for the team, reminding care partners to perform tasks or stepping in themselves for support.

                    Some with severe terminal illnesses — like cancer or dementia — prefer a relatively small group of close family and friends to visit their bedside. Your doula can coordinate visitations and facilitate an honorable environment for those wishing to pay respects. 

                    Honorary Services

                    Some elders and families prefer for services in the home or care community. If desired, home services provide a private, dignified environment to honor life. Home vigils are common for:

                    • Grief management
                    • Religious preferences
                    • Natural burials

                    Services may be religious or spiritual and also known by many names. Some last hours or several several days. Or they may be simple celebrations of life. Families may decorate caskets and recall life stories in the presence of the deceased. Your death doula can coordinate bedside services to include prayers, hymns, scripture readings and other rituals dear to your faith and traditions. 

                    Is a Death Doula the Right Fit for Your Care Partner Team?

                    It’s a matter of preference. Death doulas can serve roles in all facets of end-of-life care. Just as a midwife would assist the expectant mother, baby and family before, during and after birth, a death doula provides caring structure, support and guidance before, during and after death.

                    Don’t wait too long to craft a plan and build a care team. Your loved one likely has specific needs and wants for their final days. You’ll only learn these through ongoing conversations while your loved one is cognitively aware and care partner emotions are calm enough to assess all options and wishes.

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

                    conversations about hospice

                    Don’t Wait for Important Conversations About Hospice

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                      No one wants to envision their dying moments. No one wants to picture a loved one dying, either.

                      But death is a part of life, and it’s important to have important conversations about hospice before it’s too late. Hospice can deliver comfort and peace of mind. Pre-planning and deciding what you want your dying process to look like and how you want to die is the greatest gift to those you love.

                      The average duration of hospice enrollment in 2018 for over 1.5 million Medicare patients was about 90 days while the median length of service was just 18 days, according to the National Hospice and Palliative Care Organization (NHPCO). That’s not a lot of time, but it may seem like an eternity when someone you love is hurting. Once you have a diagnosis or your physician has indicated that the end may be coming, that is the time to call hospice. The better the staff from hospice can know a person before they are actively in the dying process, the better they can personalize their care.

                      Too often, family members and care partner teams — consciously or subconsciously hoping to stave off the inevitable — wait too long to discuss end-of-life care. That can be a physically and emotionally painful mistake for everyone involved. So let’s prepare for the most comfortable and dignified treatment in those final moments. We urge developing and implementing a plan with your loved one now while emotions are calm and everyone can assess realities from a fresh perspective.

                      How to Discuss Hospice Care with Your Care Partner Team

                      Everyone must first understand that hospice care is not a surrender. It’s common for almost everyone to fear death — and to avoid acknowledging its inevitability. Hospice care is simply an often-necessary resource to ensure your elder’s wishes and comfort are considered as they go through the process of passing away. And, yes, it’s often a process lasting days, weeks or even months of euphoric ups and devastating downs.

                      Here are some great talking points:

                      Comfort Care

                      Most hospice cases involve terminal illnesses like cancer, organ failure and dementia. Unfortunately, dying moments often come with pain, sickness and overwhelming discomfort. Discuss these realities early within the care partner team to:

                      • Acknowledge that pain and sickness will likely be a factor,
                      • Allow the care recipient to express their pain management wishes,
                      • Consider everyone’s opinions and emotional needs, and
                      • Plan and mobilize resources for when the time comes.

                      A dying person may not be physically or mentally able to express what they need. Weighing all options and making decisions before health crises strike will eliminate needless confusion in an emotional end-of-life scenario. Your care partner team will feel empowered by following a person-focused plan with steps agreed upon long before.

                      You’ll know your mother, uncle, husband or whomever agreed to a certain pain medication, without the “they wouldn’t have wanted that” aggravation and ambiguity.

                      Ice-breaker: “Mom, we know you don’t like medications, but tell us what makes you feel better when you’re in pain.” Centering the conversation on what makes her feel better prompts her to open up and express what she would prefer. It may be morphine — or maybe even a shot of Irish whiskey.

                      Home Environment

                      Many individuals choose to receive hospice care where they’re most comfortable — at home. They’ve often lived there for many years, raised families and collected happy memories. In many end-of-life cases, they’re enduring considerable pain and illness with only those memories to lift their spirits.

                      It’s only fitting they pass away in peace where and how they choose.   

                      Home care accounted for 98.2 percent of hospice care provided in 2018, according to NHPCO.  Included in this data set are individuals who received care in their home, assisted living facility or care community.

                      A great life care plan should include where the person wants to be and the environment they choose for their final days. Some simply want music and art around them, a comfortable bed with fresh sheets, and soft pillows. Others are selective about whom they wish to see and when in their final days. Some anticipate their physical condition and appearance at the end may be unattractive or uncomfortable for loved ones. Naturally, they may wish only close immediate family members to enter their room or home.

                      Hospice agencies work with the care team to create the desired home environment.

                      Ice-breaker: “Uncle Greg, I remember you said The Beatles were your favorite band growing up. What’s your favorite album?” He’ll likely open up about Sgt. Pepper or the White Album, and the conversation may flow naturally to a particular song he’d like to hear in the end.

                      Spiritual and Emotional Care

                      People don’t necessarily have to be religious to require spiritual and emotional care at end of life. The same goes for their care partners. Approaching the end, many embrace spirituality and a wholesome environment in preparation for what awaits “on the other side.” A care recipient may desire certain hymns, prayers or ceremonies. They may want a certain priest, pastor, rabbi, imam, shaman, spiritual adviser or other clergy member to deliver services.

                      Care partners may similarly require counseling or spiritual services, whether they’re family or close friends. End-of-life care can be stressful, scary and uncertain for everyone involved. Establishing ritual needs ahead of time often makes the entire care circle feel comforted and less alone. Having clergy present can make sense of the “grand design” by higher powers known by many names, especially when it seems senseless to say goodbye. 

                      Ice-breaker: “Sis, what’s that verse in Psalms you always enjoyed so much?” She may recite the verse word-for-word and perhaps recall a local pastor who made perfect sense of its message. Such a dialog may lead to final prayers and who should say them.

                      Are You Ready to Have the Hospice Conversation?

                      Developing the final part of a life care plan can be heartbreaking for everyone. But it’s critical to address the end-of-life care that may be necessary to relieve suffering and provide support.

                      You could even include a hospice agency and employees in your care partner team. They’ll enjoy truly getting to know the individual and their loved ones before things get bad. As a result, they’ll know how to better develop person-centered care around your own wishes, personalities and needs.

                      Don’t wait until the crisis hits. Have the discussion early. You don’t need all the answers in one sitting. A loved one understandably may not want to discuss their final days. But we know some great ice-breakers to usher conversations about hospice along and piece together the puzzle of final wishes. 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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