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benefits of hospice

What are the Benefits of Hospice Care?

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    We always hope the end is comfortable — for ourselves and our loved ones. But life (and death) sometimes bring circumstances beyond our understanding or control.

    That’s where hospice comes in. It provides comfort and dignity to a dying person, family and friends. Death can be a painful and uncomfortable process, especially with terminal illnesses that affect so many.

    Some 1.55 million Medicare beneficiaries received end-of-life care through hospice agencies in 2018, according to the National Hospice and Palliative Care Organization (NHPCO). Nearly 51 percent of Medicare decedents that year received assistance from hospice in the end. As our generations grow older — most notably an increasing number of aging Baby Boomers — the total of likely hospice recipients only grows larger.

    Let’s Discuss the Benefits of Hospice for Your Life Care Plan

    As you build a strong life care plan for yourself and elders, it’s natural to ponder the benefits of hospice care. Will it be necessary? How can it help? What bad could happen without it?

    Comfort

    The ability to provide strong pain-management medications and therapies is one of the most obvious benefits of hospice care. Hospice is authorized to provide pain-killing opioids like morphine and Dilaudid and anxiety meds Valium and Ativan, which doctors would otherwise avoid for risk of addiction.

    Hospice patients are typically diagnosed with six months or less to live. The goal is to make the remaining time comfortable, without worrying about the types or quantities of medications required.

    The most common terminal diagnoses requiring hospice care include cancer (29.6%), heart/circulatory diseases (17.4%) and dementia (15.6%). Terminal illnesses in their late stages typically involve extreme pain, agitation and weight loss only relieved by strong medications.

    Home Care

    Most people choose to pass away at home, if possible. Who could blame them? It’s where family and many great memories took root. Hospice care helps to create a home atmosphere even if an elder must continue in an assisted-living home or care community.

    Hospice delivers all the medical care and support necessary, wherever it may be needed, without the overwhelmingly cold and impersonal hospital atmosphere. No one enjoys doctors and nurses popping in unannounced to monitor vitals or administer treatments. Hospice care involves an intimate circle including only your chosen care partners.

    Financial Relief

    Hospice care is covered by Medicare, Medicaid and most private insurance. Most individuals have no out-of-pocket costs associated with hospice and its services including:

    • Prescription medications
    • Medical equipment and supplies
    • Doctor and nursing services
    • Dietary counseling
    • Grief counseling and respite care for both the individual and their care partners

    At end of life, frequent hospital visits can cost families thousands in uncovered medical expenses. Hospice care works to ensure such visits are unnecessary. However rare, short-term inpatient care for pain and symptom management are covered under Medicare and Medicaid.

    Spiritual Life

    Many people nearing their final days understandably look to a higher power for comfort and understanding. It’s common, whether they expressed devout beliefs or weren’t particularly spiritual at all. They often wish to talk about paths through life including families, personal choices, jobs and the like.

    Some like to know what awaits “beyond.” Others simply enjoy being close with a person of faith.

    Hospice agencies make every effort to include clergy from your own religious denomination or place of worship. Hospice helps to coordinate any religious visits, services, prayers and rituals with a network of established clergy of all faiths. 

    Care Partner Support & Counseling

    Care partners endure their own traumas while tending to a dying elder. They feel grief both before and after loss. They feel overwhelmed with the sometimes heavy burden of witnessing suffering.

    Hospice agencies provide access to grief and support counseling for both the care recipient and their care partners. This often includes respite care for loved ones who need a brief break, as well as professional counseling to understand and manage powerful feelings.

    Hospice: Bringing Comfort and Dignity to End of Life Care

    The average enrollment in hospice is roughly 90 days. Individuals at end of life typically receive full hospice services for less than 20. A care partner team should not wait too long to have these important conversations. For the best quality care, you want enough time for the hospice agency and its staff to get to know your loved one and the needs of everyone involved.

    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. We’re happy to provide referrals and guide the process in a caring and compassionate way.

    early onset dementia

    Early Onset Dementia: Mom Keeps Forgetting My Name

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      Your mother readies for the day one morning. You’ve just enjoyed a delicious breakfast. The comforting smell of maple syrup and pancakes lingers in the air, welcome as a family friend.

      You’re both excited for a day of, let’s say, perusing yard sales. Your annual spring outing, rooted in tradition and love, is more about spending quality time together than finding little treasures.

      Then something happens that’s not so familiar. Mom calls you in the room. “Sarah,” she says, “have you seen my gold bracelet?”

      You walk to her room, confused. Your name’s Rebecca, and she’s wearing the bracelet. You’re visibly taken aback as you explain what it seems she should already know. Your mother may even laugh it off. “Oh, silly me,” she says, noticing the bracelet and gesturing toward a few strands of graying hair, as if to justify a “senior moment.”

      She’s only in her late 40s. Isn’t it too early for dementia? Forgetfulness happens sometimes to even the healthiest, most cognizant people advancing in years. But Sarah? The bracelet? Something in your mother’s memory slipped, if only for a moment.

      The simple answer is, no, it’s not too early. Early onset dementia symptoms may begin in a person’s 40s — or younger. It affects approximately 200,000 of the 6 million Americans living with Alzheimer’s or dementia today.

      You See Symptoms of Early Onset Dementia. What’s Next?

      With time, instances like these may grow more frequent. Your loved one misplaces your name. His or her day-to-day and minute-to-minute memories begin to draw back with time. Your natural instinct may be to worry, to correct, to fight against the progression of regression in hopes their memories regain their once-strong foothold.

      But a great care plan should allow some personal space, perspective and understanding. Here are some strong first steps:

      Begin With a Comprehensive Medical Evaluation for Younger Dementia

      Self-diagnosis, or a diagnosis by close family and friends, often works contrary to care goals. There are more than 400 different types of dementia. Each has its own definitive characteristics and speed. What’s more, dementia affects each individual differently. Each requires its own special style of care.

      You know your loved one well. Memory lapses, slips in reasoning and judgment, and other behavioral and physical changes — especially early in life — may be uncharacteristic. You should first seek the professional opinion of a primary care physician or neurologist. Comprehensive tests can understandably be scary or overwhelming. They typically include a medical exam, cognitive tests, brain imaging and other diagnostics. From these, a doctor has a clearer picture of symptoms and potential causes.

      You may learn there’s no medical reason for forgetfulness. A busy mind filled shuffling stressors of work, family and everyday life can be forgiven for missing a beat occasionally. After all, many of those in the average 40-to-55 age range for early onset dementia are at a life stage when work and family responsibilities are most demanding. They’re often reaching the pinnacle of careers, while some also balance being care partners for elders themselves while guiding children through high school and college.

      If tests do, however, uncover signs of dementia, you’ll be informed to address those specific symptoms and plan for the future.

      Build a Person-Focused Life Care Plan

      Early onset dementia still merits a life worth living. Changes in memory over time should have little impact on a person doing the things they love. For many years to come, they may enjoy family meals, hobbies, attending the kids’ concerts and sports events, and everything of the sort.

      A life care plan simply spells out how important details will be addressed, as needed. It’s a living, breathing document. Once in writing, it can be updated to include new wishes or care directives. It defines, organizes, prioritizes and mobilizes every aspect of an elder’s care from life through death. These elements may include:

      My life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia, has a wonderful life care plan. It includes everything from enjoying music to donating his brain to science and vital organs for others to live on. It’s about enjoying life’s simple pleasures and helping others after he’s gone.

      A life care plan should be person focused. Brian often discusses losing 30 pounds post-diagnosis — only because he would sometimes forget to eat. That’s a pain point, and it may require only a gentle reminder from a care partner about meal times. But a good plan is not only about preparing for and reacting to crises. It should emphasize the development of ongoing relationships with loved ones.

      Remember, you’re caring for (and alongside) the person, not the illness.

      Build Your Care Partner Team

      We prefer the term “care partner.” The term “caregiver” or “care provider” implies a one-way transaction — a person providing the care. Words matter. Even linguistically, the perception of this one-way street disempowers the individual, empowering only the medical professionals and family/friends “seeing to” their care.

      Their voice matters!

      It’s a partnership between two (or more) people and characterized by mutual cooperation and joint responsibilities. An elder may choose their son, daughter, nephew, neighbor, best friend, doctor, third-cousin-twice-removed, or any other combination for a journey that requires support for everyone involved.

      Just as your elder may require help drawing a bath or cooking meals, their care partners may need resources in coordinating activities. A great team has well-defined roles. Perhaps a husband or wife does mealtime, while one of the children does laundry, and a sibling organizes a fun group activity for everyone to enjoy.

      Or maybe someone does it all!

      There are no strict rules for what a care partner team does or should do. Everyone cooperates for a life worth living!

      We Are #DementiaStrong

      The path ahead will be hard. But nothing good in life is easy. Just know We Are #DementiaStrong. Let’s work together to make a plan for memory loss while cherishing the memories that remain.

      Knowing where you and your loved one stand is the first step to creating a plan for the road ahead. For these decisions and more, Caregiver Support and Resources, LLC helps you to build a plan for today and tomorrow.

      aging reasoning and judgment

      How Do Reasoning and Judgment Change During Aging?

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        People later in life may experience difficulties with reasoning and judgment. Much like an older loved one may forget names or important events, they may too struggle with decision-making. Or perhaps you’ve noticed your own sharp judgment has waned in recent years.

        Don’t worry. That’s natural. Even without dementia, our interwoven cognitive abilities affecting reasoning, judgment and memory in some people may regress with time.

        What might that look like? You may have difficulty making important financial decisions. A loved one may make dangerous mistakes more frequently like running a red light.

        Care partners and people getting older should monitor these developments closely. With safety, finances and other well-being matters dictated largely by sound judgment, it’s important to understand how cognitive changes over time may shape decision-making now and in the future.

        But What Exactly are Reasoning and Judgment?

        People from a young age develop the capacity to reason through scenarios and judge the consequences of actions. A toddler won’t touch the stove again because the heat was painful. A fourth-grader learns to finish her dinner because she didn’t get dessert the night before. A college freshman learns to budget money after overdrafting his account.

        A lifelong series of mental transactions leading from action to consequence or reward help us to avoid repeating mistakes and seek continual gratification. Second-hand experiences also drive decision-making. If you’ve never been in a car accident, you’ve likely seen the aftermath of one. You know it’s dangerous to lose focus at an intersection or change lanes on the highway without checking your blind spot.

        And Then We Get a Bit Older

        We avoid calling them senior moments. It pigeon-holes our elders and ourselves into a state of victimhood against age. Some people simply live with cognitive decline with age, a natural biological process. It just happens.

        And here’s a little glimpse of what’s going on in that beautiful, little tool we call a brain.

        Attention

        You or your elder may notice that attention span or attention to detail isn’t what it once was. Where your mother could once read half a chapter book before bed, she now finishes only a chapter a night. Where you once managed multimillion-dollar financial portfolios, you now can’t finish a grocery list. The capacity to focus for long periods of time helps reasoning and judgment in all decisions.

        Attention may be selective. Only enjoyable or beneficial things like practicing golf or playing with grandchildren earn full focus.

        Attention may be distracted. Important tasks like balancing a checkbook or cooking a meal take longer, with more unexpected foggy pit stops.

        Decisions could appear impulsive, as the person has difficulty focusing on more than one option or long-term consequences.

        Meanwhile, the person wittingly (or unwittingly) deprioritizes important elements of good judgment like eating healthy or making an important bank deposit.

        Memory

        A 72-year-old man momentarily forgetting his daughter’s name isn’t necessarily a harbinger of dementia. It may be something to monitor, but memory that controls decision-making should take priority for the time being.

        Cognitive decline may affect short-term memories. Misremembering when you put roast in the oven or where a care partner parked the car can be dangerous and scary.

        Fuzzy episodic memories, closely tied to executive function, allow people to choose based on past experience. The person may recall making a positive financial decision 30 years ago that would no longer be wise today. The problem here is failing to assess context for a present choice.

        Procedural memories like how to drive a car or the quickest route home also may fade with age. A driver may forget to use a turning signal at a busy intersection. Or confused about directions, they may be indecisive on the road, potentially endangering themselves and other drivers.

        Working memory lapses could affect how quickly an elder processes information when faced with a decision. The stress of acting in the moment could become overwhelming, inhibiting their ability to recall the trauma or reward of a past experience.

        Perception

        Declines in sensory perception and cognition have an uncertain relationship. Regardless, numerous studies indicate that sensory declines do impact judgment and decision-making in older people. Like many functions, regressions in all five senses over time are a natural part of aging.

        Elders with difficulty seeing or hearing lack a full sensory perspective on which to make decisions. Your grandmother could be afraid to drive at night. It may not be because she’s losing her ability to function on the road, but that she merely needs new glasses. Without being able to see well, night or day, reactionary motor skills based on dynamic vision and depth perception may be slow or limited.

        Similarly, hearing losses may cause an older person to misunderstand a direction or to tune out of social situations. Mishearing a doctor’s recommendation to take a certain dosage of a medication, for instance, may cause sickness. Meanwhile, your loved one may no longer seem lively — seeming distant or even aggravated — in family conversation. This may not be a sign of behavioral changes, but simply that they feel they can no longer enjoy a meaningful relationship.

        Living Life to the Fullest Despite Changes in Reasoning and Judgment

        Changes in reasoning and judgment are natural with age. We’ve built vast, meaningful stores of memories and experiences through the years, but our ability to recall and process them to make decisions sometimes slows with time. The reasons for this are many and complex.

        That’s OK. You or your loved one are still the same person, perhaps only requiring a bit more care and attention. Life goes on in new and different ways. Your care partner may need help preparing dinner. You may need an accountant to double check your figures. Your father may just need a hearing aid.

        For these decisions and more, Caregiver Support and Resources, LLC helps you to build a plan for today and tomorrow.

        A Day In The Life….

          Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.

          Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.

          I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
          For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
          I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”

          This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.

          I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me andLaughing say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”

          Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.

          I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
          When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
          One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.

          Then, as the saying goes, “Along with the GOOD comes the BAD!”
          This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
          AloneIt’s sort of like spontaneously combusting, except I burst into tears instead of fire.
          I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
          Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
          Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.

          I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.

          I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!

          I am merely trying to give you a perspective of what a day in my life is like.

          DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
          EVERY SINGLE DAY? NO! (but more than not)
          DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”


          I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
          In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
          Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.

          You gotta see the positive!!!

          Until next time . . .
          PEACE

          B

          Caregiver Support and Resources

          AND SO OUR JOURNEY BEGINS

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            Bob and Darlene’s daughter Jill works full time as a Marketing Director for a large manufacturing company. Her work had her on the road most days, in meetings with new and existing clients. Her hours are long and unpredictable. The pandemic has completely changed how she does her job and honestly, she is worried about how she can continue meeting her requirements for bringing in new business.  There doesn’t seem to be a moment in her day that her parents aren’t on her mind. Bob and Darlene are both in the 80’s. They have been married for 55 years. Jill knows that staying at home together is important to her parents; but sometimes she wishes that they would agree to go live in an Assisted Living Facility. Jill also worries that she has little knowledge of her parent’s finances, legal planning, medical history or insurance. Would they even have the money to receive care if they agreed to it? She knows that she needs to learn more about all of this. Her parents have always been very private people. It makes her feel uncomfortable to even ask her Dad any questions though.  How can she even start this conversation? Her Mom and Dad both have Doctor appointments coming up and Dad insists that they can handle it themselves. Jill really wants to go to the appointments with them.

            But Jill needs to focus on work. As she scrolls through her emails, she sees that her company is offering a Lunch-n-Learn Zoom meeting Thursday. The topic is Caring for Your Parents! This is a miracle!!!! Jill can feel some of the stress release just knowing that she might find some help. Then all the sudden the worry returns. If she attends this meeting, will it alert her boss that she is dealing with this in her life and will it cause them to question if her low new client numbers are as a result of her time and energy going to her parents? Maybe she shouldn’t risk it? Maybe she will look online and see if she can find something similar not connected with her work?   Her cell phone rings, she sees it’s her parent’s number. Dread fills her mind. “Hi Dad…what’s wrong”?

            Jill meets her Dad at the Emergency Room. Her Mom is getting x-rays. She fell and Dad had to call 911 because he couldn’t get Mom off the floor in the bathroom. The EMTs got her into the ambulance and brought her here. Dad doesn’t know why they had to bring her to the ER, he didn’t want them to; but they insisted. Jill asks her Dad what Mom was doing when she fell. He answers that he isn’t sure because he was in the kitchen preparing them lunch when he heard her fall. Jill starts to ask about their health insurance when they wheel Mom back in. Jill can see that her Mom is scared and anxious, her Dad stands up and goes over to the bed to hold his wife’s hand. Jill can see bruises forming on her Mom’s face and arms. They sit for hours waiting…. everyone’s anxiousness builds. Mom keeps trying to get up and leave. Dad tells her repeatedly that she can’t. Mom keeps asking why. By the time the Doctor comes in, Jill only wants this to be over.  

            The Doctor says that there aren’t any broken bones. When Darlene was admitted, they had asked about her medications. Now, the Doctor questions Bob as to the dosages Darlene is taking and when she is taking them. Bob admits that Darlene has so many Doctors who prescribe medications for her and that when they change the prescription or dosage he often gets confused. The Doctor tells Bob that he needs to make an appointment with Darlene’s Primary Care Physician to get a clean medication list for her. The Doctor then looks at Jill and asks “Will you be able to attend that appointment with them”? Jill says yes, but she can see her Dad shaking his head.  In the car on the way home Jill tells hre Dad that she really wants to learn how to help them. He says she is too busy and he doesn’t need help. But she knows they do…..

            IN REMEMBRANCE OF MARY

              I wrote this original post several years ago but being today is the anniversary of my Neice’s death, I wanted to remind everyone of the valuable lessons she taught us.

              As soon as Mary was born, my niece statrted to struggle. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
              She went through, not 1 but, 2 double lung transplants. She fought so hard during all 22 years of her young life.

              Mary passed away on October 14, 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which was in September. It was a huge surprise.

              I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

              I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

              During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

              We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

              The answer to the question, “WHY HER?” came to me this morning.
              She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. For those of us who are Living with a Dementia-Related Illness or any type of Illness for that matter, are just asking to treat us normal. Please don’t treat us as our Disease or Disability, just treat us as you would like to be treated.
              Being Mary could still laugh through it all was also a valuable lesson. It is why, I laugh as much as I can and try to to keep a positive attitude. We can all learn so much from a brave, 22 year-old, young lady, Mary Estelle Tycer. She showed us how to LIVE WELL and asked to be treated normally.
              All we are doing is asking for the same!

              Missing You, Mary
              Your Favorite, Uncle B

              I miss her so very much but I know she is with my Mom, breathing with no issues, laughing, telling stories and at peace.

              Herding Cats

              HERDING CATS OR LIFE CARE PLANNING?

                About 5 years ago, I became extremely excited to learn about Life Care Planning. To be honest, it was just about the time the Geriatric Care Managers changed their titles to Aging Life Care Managers and I thought that the two things were one and the same – I learned that I was wrong. According to The Life Care Planning Law Firms Association; Life Care Planning is a holistic, elder-centered approach that helps families respond to every challenge caused by chronic illness or disability of an elderly loved one. The goal of Life Care Planning is to promote and maintain the good health, safety, well-being, and quality of life of elders and their families. Elders and their families get access to a wider variety of options for care as well as knowledgeable guidance from a team of compassionate advisors who help them make the right choices about every aspect of their loved one’s well-being. Life Care Planning relies on an inter-disciplinary team that works to identify present and potential future care needs, locate appropriate care, and ensure high-quality care. This approach relies less on crisis-oriented transactions and more on the development of on-going relationships with families. With this in mind, I set out to work with law firms who specialized in elder law to add Life Care Planning to their practice. I was not successful.

                The primary objection voiced by Attorneys that I have tried to overcome is this, “People will not pay you for something they aren’t certain they will need.” I have noticed that this truth pops up frequently in life. Let’s talk about Homeowner’s Insurance. I would place a bet that if mortgage companies didn’t require this, a great deal fewer people would own it. Likewise, with car insurance. Smoking is another example, even though the evidence that it can kill you is easily found, many people continue to smoke.  In fact, I have coined the phrase “Floating down the river De-nial” as the primary reason people don’t plan.

                So, I approached this from another point of view. I have spent decades assisting people who have found themselves in a Long-Term Care crisis find their way out of the crisis. And I gratefully continue to do this. I am the life and care partner of a man who is living with Alzheimer’s and Vascular Dementia and we co-founded We Are Dementia Strong. I work closely with professionals who serve this same population in numerous ways, including elder law attorneys and geriatric life care managers. What if, instead of calling it Life Care Planning, I called it Herding Cats? Because when you fail to plan, your life becomes a constant activity in herding cats. The problem with this approach is that it is rather insulting and even though it is true-it really doesn’t sell well. The other issue is that as I am so oft heard to say…the older I get, the older “OLD” gets. People do not want to think of themselves as older or about becoming incapable of fully caring for themselves.  

                I believe I have landed on a more palatable solution to the challenge. I am going to create a weekly blog post that takes us all on a journey with Bob and Darlene and their daughter Jill. Bob is caring for Darlene, who is a Person Living with Dementia, at home. Bob himself face multiple health issues. Jill is working and has a family of her own. They are hesitant to jump onboard the Life Care Planning train. We will work with them and learn from them. I hope you will all enjoy the blogs and contribute with your comments. I am looking forward to our journey together.

                Dying with Dignity Maureen Rulison Brian LeBlanc

                DYING WITH DIGNITY

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                  Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

                  In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

                  Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

                  With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

                  One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

                  This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
                  – I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
                  – I want them use my organs to keep someone else alive.
                  – I want them to use anything they can to benefit others.

                  I can’t think of a better way to help others, rather than just put me in a hole in the ground.

                  In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
                  Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

                  Like I stated above, this is not for me but I respect those who choose this alternative.

                  So, what do I want to happen during the dying process?

                  • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
                  • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
                  • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

                    This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
                  • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
                    I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

                  Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

                  Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

                  With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

                  You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

                  Some things I forgot to mention was, I want to have a Celebration of Life.

                  I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

                  The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

                  Doing this is one of the greatest gifs YOU can give to your Loved Ones.
                  DON’T WAIT UNTIL IT’S TOO LATE!!!

                  Until Next Time . . .
                  PEACE!!!

                  B

                  Donation For Kids on Street

                  Donation For Kids on Street

                    We have shared many stories on how we allocate our resources to helping communities and families escape poverty.   This year alone, we have housed over 100 kids living on the streets with their families, giving them access to water and food

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                    Pre-Planning

                      Pre-Planning & Care Partner Team Building

                      A life worth living requires a team effort. So let’s put a team together to work with your elder (not for your elder) in many different ways. The term caregiver, in the common vernacular, has long described family, friends and medical professionals who manage elder care. We prefer person-focused language and care. The term care partner dignifies the individual. It more accurately describes a spirit of cooperation and empowerment. It leaves the individual at the center of their care, their needs and their future – even when they may no longer be able to speak for themselves.

                      Building a care-partner team adds many valuable talents to the mix. Caregiver Support and Resources, LLC builds care-partner teams to include individuals chosen by the elder. Members of the team may consist of family, friends and professionals. The partnership is characterized by mutual cooperation and joint responsibilities. There are opportunities to give and receive care by all parties in this partnership.

                      Schedule a Free Consultation

                      Building a Life-Care Plan for a Life Worth Living

                      With the team in place, you must now build and execute a life-care plan for a life worth living.  We build plans that ensure the elder maintains control or keeps the decision-making as close to your loved one as possible. We emphasize being loved, meeting all care needs, having financial security, and creating a life of joy, happiness and comfort as long as possible.

                      Every life-care plan has three primary objectives for peace of mind:

                      1. To create a personalized care plan that ensures that the elder is well known by all that are there to support him or her. This may include written documents and/or videos detailing the elder’s history, likes and dislikes and wants and needs.
                      2. To ensure your loved one gets appropriate care, whether at home or in a care community, to maintain the quality of life they deserve at a cost they can afford through public and private assistance.
                      3. To provide the care-partner team with supportive tools.

                      A life-care plan is a working document. It provides accurate and timely information that addresses all aspects of care from physical therapy, clinician visits and crisis intervention to financial responsibilities, dietary needs and community living. The plan can be easily updated by the elder and care partner team as needs inevitably evolve with time. It’s a lifelong guide.

                      Caregiver Support and Resources, LLC facilitates a collaboration between an elder, their care partner team and an interdisciplinary team to identify current and future care needs, locate appropriate care, and ensure high-quality, compassionate and cost-effective treatments. This approach relies less on crisis response and more on the development of ongoing relationships with families. It defines, organizes, prioritizes and mobilizes every aspect of an elder’s care.

                      Life Care Planning – From Experience

                      Maureen Rulison, CDMCP, is an expert Elder Life Care Planning specialist, Certified Medicaid Planner and Culture Change Agent. Most importantly, she is a care partner for her life partner Brian, who lives with Alzheimer’s disease and vascular dementia. Their journey together is strengthened by a life-care plan that factors both of their physical, mental and emotional needs.

                      Let’s Build Your Care Partner Team and Life Care Plan Today

                      The earlier you build your team and plan for the future, the sooner your team can put the plan in action for a life worth living. A team is necessary to tackle joint responsibilities in good health and bad, today or 20 years from now.

                      Click Here to Plan for a Life Worth Living

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