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dying with dignity

Dementia Meditations: Living on the Way to Dying

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    By Brian LeBlanc

    I hate to be a downer. Anyone who truly knows me knows that – that I’m always looking to find the good, to find the laughter, to smile. Because we’re all “on the way out,” only at different stages. For me, with my Alzheimer’s disease and vascular dementia, my “way out” may be a little closer than yours.

    And that’s OK. Complications from dementia kills 100 percent of us. Life, even for healthy people, kills 100% of us. So let’s focus on living on the way to dying.

    I spent last weekend at (you guessed it) Disney World with my life partner/care partner, Maureen, our granddaughter, Emma, and some close friends. It’s like my 4 billionth time there (you think I’m exaggerating haha), and each time I find something new and exciting. Or perhaps we can find some humor in that it’s only new and exciting because I don’t remember it from before. And you can see from the picture that I was completely helpless against being covered in Mickey Mouse stickers.

    Now, THAT’S living! Enjoying loved ones. Enjoying a happy place. Living in the moment. Relishing the time I have left. And I would hope, as my dementia progresses, I’m able to return time and again – even when I can’t communicate or move around freely. I’ll remember Maureen and Emma and other loved ones and the place – even if not by name – as something loving and pleasant.

    Living and Dying with Dignity

    We’ve make a lot about a life worth living and dying with dignity in our messaging for #WeAreDementiaStrong, Caregiver Support and Resources, A Bit of Brian’s Brilliance, and our new Podcast. It’s a process. There’s a lot of planning and organization. Thankfully, that’s what Maureen does professionally. But even with her expertise, there’s a lot of learning and adjusting along the long-and-winding road.

    We do what’s needed to light the path where it’s most dim, to smooth out the rough areas, to understand complex realities. And I thank God for Maureen coordinating all those doctor appointments, medications, memory-care treatments and outside-the-box thinking. She knows listening to music for a bit can snap me from a fog. She knows when to tell me about upcoming events and appointments – and just as importantly when not to tell me – to avoid unnecessary anxiety. 

    So as we prepare for the end, whenever that may be, I know we’ll have that life worth living … together.

    A Friend in the End

    I’ve said for so long that I want to have a living memorial service. I want music, drinks, Hawaiian shirts, laughter, more drinks, more music, and memories (even if they’re no longer mine). Let’s celebrate the good years, the bad years, the in-between years. I hope for a friend in the end – a bunch of friends would be even better!

    But death … when it happens … will be a solemn occasion. Lots of people will congregate at the funeral home, waiting in line to see the person they once knew lying in the casket.

    They may shed a tear or two, say a prayer, and then they walk away. As they join family and friends, they say things like, “Oh, he looks so good.” or “WOW, their last days must have been hard seeing all the makeup they used.” They may live out of town and didn’t visit or make any phone calls during the last weeks or months, so knowing the details of decline and what to expect would be quite impossible.

    These are folks who say, “Well, I would’ve called but I didn’t think they would understand what I was saying. I would have been embarrassed.” 

    I think you get the picture. But know the presence of loved ones, even if we may not comprehend, is still welcome. It’s actually vital to our well-being.

    As my Alzheimer’s progresses, I know it or a related illness will probably lead to my death. But I’m not going to live out the rest of my days waiting for my time to come to an end.

    I WANT TO LIVE as much as I possibly can. I want to visit places I’ve never been but always wanted to. 

    I want to LIVE like there is no tomorrow with no regrets.

    Peace

    -B

    dementia advocacy

    Dementia Advocacy: Honored to Receive Southern Gerontological Society Award 

      By Brian LeBlanc

      When I was diagnosed with Alzheimer’s disease in 2014, I could’ve never guessed the path ahead. Crazy. Amazing. Uncertain. Scary. Rewarding. All rolled into one. All I knew was that I felt a calling toward dementia advocacy and to help others on similar paths with education and resources. 

      Fast-forward a few years, and I was absolutely honored, humbled and inspired to receive the Rhoda L. Jennings Distinguished Older Advocate Award from the Southern Gerontological Society. (OK, so Maureen jokes that seeing me “humbled” isn’t something everyone can say, but it’s true … 100% humbled to tears.)

      The awards ceremony was held April 7 in Panama City, FL. The banquet hall was packed with so many wonderful people in the world of gerontology (a big, fancy word for aging), of which Alzheimer’s and dementia care is just a small part. So there were doctors, scientists and researchers, university professors and other educators, advocates, influencers – all spanning different disciplines and areas of expertise across the whole South. 

      It was almost too much! Although, if you know me, the more people to chat with the better! (But again with my nasty habit of digressing.)

      It was an honor to be considered a peer – even if just for a day – and to have my longtime efforts acknowledged toward Alzheimer’s and dementia advocacy and education. When I went up to receive the world, it was the best feeling ever to turn back around and see these great folks standing and applauding. 

      And on a side note, I was so happy to be able to attend so soon after my recent pacemaker procedure.

      Dementia Advocacy Through Outreach and Education

      But more important than all that? The mission. #WeAreDementiaStrong has been steamrolling with the dementia advocacy mission. Maureen and I have always worked so hard to produce educational content, and we’ve been very blessed that so many organizations have offered us platforms to speak and/or write as guests. 

      In the past 18 months, there’ve been some awesome developments:

      • #WeAreDementiaStrong now has 501(c)(3) status, allowing us to receive grants and donations to scale this awesome mission and reach more people.
      • Both #WeAreDementiaStrong and Caregiver Support and Resources, LLC now have new websites that are regularly updated with new informative content to help persons living with dementia and their care partners.
      • We’ve produced a new magazine –  “What To Do After A Dementia Diagnosis” – available in both downloadable PDF and hard-copy formats.
      • We’re launching the new #WeAreDementiaStrong podcast to reach greater audiences in the digital realm.
      • We’re producing new on-demand Continuing Education Credit opportunities with Inspired Memory Care for social workers, nurses, patient advocates and other professionals who serve roles in the continuum of dementia care.

      And we’re happy to say, there are even more irons in the fire! More education. More partnerships. More avenues for community outreach. 

      #WeAreDementiaStrong Is Here For YOU!

      We walk this dementia path together. Maureen, the love of my life, is the absolute best care partner, life-care planner and Patient Advocate anyone can ask for. And we sincerely hope our lived experience – the good, the bad, the funny, the sad and the ugly – helps you in some small way.

      We’re honored for the recognition. But there’s so much more work to do – while I still have breath in my lungs and perhaps a few healthy brain cells left to say what needs to be said.

      Much love.

      Peace,

      -B

      Alzheimer's and dementia

      Pacemaker Update: ‘I’m In Love With Her and I Feel Fine’

        By Brian LeBlanc

        I owe you an update! 

        If you haven’t seen from social media already, my recent pacemaker procedure went just fine. Of course, Maureen and I had some fears and trepidation heading into it. With my Alzheimer’s, vascular dementia and long history of heart problems, even the most routine of surgeries brought so many risks.

        What would dementia have to do with a heart surgery? Well, going under hard-core anesthetics could have completely wiped – or at least severely diminished – what remains of my precious memories and cognitive abilities. Thankfully, they used a twilight sedation to basically knock me into a state of semi-consciousness. The doctor apparently told me, “You’ll be able to hear us, but you won’t feel anything or remember anything.” I joked, “Doc, you know I have Alzheimer’s, right? It’s not going to matter anyways.”

        I’d like to think everyone had a good laugh at that. But in all seriousness, even the twilight sedation could have left my already deteriorating mind in a dreaded fog – indefinitely. 

        And then … it was over. So quick! On and off, in and out, like a light. Next thing I knew, I was waking up with Maureen at my side with a little pacemaker in my chest. We were all pleasantly surprised that there were no residual “foggy” effects. We thank our lucky stars, the Lord, whomever for that! 

        (I’m told, however, that I was a bit flirty with a couple cute nurses. Me? Brian LeBlanc? No way! Maureen and I just laugh it off as me being silly.) 

        I was scheduled to stay overnight for observation, but I was able to go home THAT VERY DAY! Even though Maureen (my wonderful and beautiful life partner/care partner) would’ve been able to stay with me, I was so happy to be able to sleep that night in our own bed. 

        So in a nutshell, I’m home and happy and feeling well! Like that Beatles song goes, “I’m in love with her and I feel fine. (Do do-do-do do-do do-do-do).” 

        Up and ‘Running’ A Few Days Later

        Well, not running. But walking. And, believe me, that’s a huge, HUGE, HUGE, HUGE improvement. 

        My heart had left me so weak. My sleeping heart rate had been dropping as low as 24 beats per minute. That’s frighteningly low. While awake, I couldn’t take a normal breath. My breathing was very, very shallow. Even going from the bedroom to the kitchen – maybe 30, 35 feet tops – was exhausting. (And I thought it was bad back when I was 285 pounds!)

        As I mentioned previously, this was my fifth heart procedure. Three stents and a triple bypass in recent years had me scared how much more my ticker could take. 

        But I already feel great. Maureen and I have been walking a mile a day around our beautiful 55-and-older community right on Tampa Bay! There’s a little loop around the complex, and now we can join our friends and neighbors in walking around it. We jokingly call it the “Senior Olympics track.”

        I’m absolutely astonished at medical science. It’s just this itty-bitty disc implanted in my chest with little wires running to my heart. Pacemakers are nothing new. They’re simple. But they’re an absolute miracle. This little thing is SO POWERFUL!

        Will it cure or fix my damaged heart? Absolutely not. Will it reverse the effects of my Alzheimer’s disease and vascular dementia by restoring more blood flow to my brain? Nope. Maybe it’ll slow the progression. Probably not too much, if any. 

        But it will restore some quality of life. After all, as I preach for our nonprofit #WeAreDementiaStrong and Maureen for Caregiver Support and Resources, we’re all entitled to a life worth living. 

        Special Thanks!

        Without Maureen, I would not be here today. That was true years ago. And I’m in awe every day that not only does she help me, but thousands of others as a Board-certified Patient Advocate and life-care planner. 

        Maureen and I are always happy to share my health experiences – living with dementia and other related/unrelated complications – and our lived experience with daily struggles and triumphs. That’s been my call to educate and help others since being diagnosed in 2014, and now with Maureen in the mix we can accomplish SO MUCH MORE! 

        But I don’t share for me. And we don’t share for us. We share for YOU! As a result, we’ve gathered so many supporters who’ve offered well-wishes, prayers and support before and after the procedure. Thank you – a million times!

        We’d also love to thank Dr. Jeffrey Steinhoff and the wonderful staff at the HCA Florida Heart Institute in Largo, FL. They treated me (and us) so wonderfully.

        Peace,

        -B

        low_res_Brian-683x1024

        New Pacemaker, New Dementia Uncertainties

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          By Brian LeBlanc

          Life is complicated enough. Of course, my Alzheimer’s and vascular dementia adds to the chaos and uncertainty. And as much as I openly discuss living with dementia for the sake of helping others, the opportunity to talk other health issues doesn’t come up as much.

          So here it is: I’m having a pacemaker put in Tuesday. I’m scared. I’m nervous. I’m stressed. I’m anxious. And although I trust being in good hands – for a routine procedure under skilled doctors and with my life partner/care partner Maureen close by – the uncertainties would keep anyone up at night.

          In a nutshell, my heart isn’t functioning properly … again. My cardiologist has been studying me for some time now. While sleeping in recent weeks, the heart rate has dropped as low as 24 beats per minute. I have to admit, the cell phone app was pretty cool that Maureen used to measure as I slept with my finger over her camera. But a normal sleeping heart rate is between 40 and 60. Maureen and I joke that my paltry pace is “basically dead,” but it’s no laughing matter. 

          It’s scary, frightening even. 

          Blood flow to my brain suffers. I feel it, especially in the mornings. I’m already increasingly prone to brain fog. Now I must wake up and kick my mind into gear while it starves for blood and oxygen. Some days I can emerge from the fog. Other days I sit in a trapped mind indefinitely, wondering if this is the day the fog stays for good.

          The pacemaker will help. We know this. It’ll strengthen my ticker and improve blood flow to the brain. Will it fix my dementia? Of course not. Will it clear the cold, damp fog? Maybe 8 years ago when I first received my Alzheimer’s diagnosis. We’re too far along the path now. The reality is it may only slow the progression – maybe, only maybe. 

          It’s not just about dementia now, though. That only scratches the surface because my medical problems say so. (Don’t ask me why, but I’m vaguely remembering “Because Stone Cold Said So!” from pro wrestling.) Unfortunately, this heart issue is genetic, too, on my father’s side. 

          Counting the days, so many other problems fill my mind. I can’t shake them. I’m already an anxious person. My Alzheimer’s makes that worse. That said, they are legit concerns. I wouldn’t be human if I didn’t have some fear of something going wrong. But if I do pass, as you know, we’re more than prepared for a death with dignity. 

          Now, I’ve been under the knife before. (Seems like too many times to count.) I’ve had three heart stents and then a triple bypass in 2019 – because, why not? Moving on to lucky number 5, I guess! As we all know, even the best heart has so many beats in it. Can mine take any more probing and prodding? 

          Maureen’s so good at calming the negative thoughts. She helps me backtrack and reminds me I’ve emerged fine from each of the previous surgeries. She reminds me a pacemaker thing these days is minimally invasive – essentially making a little pouch in my chest for the device and connecting some electrodes. 

          But she’s honest. That’s what makes her such a great care partner. Anesthesia can cause delirium in even healthy older patients. Those with advancing stages of Alzheimer’s and dementia like mine? We may regress even harder. Thankfully, I’ll be under “twilight sedation” – a lighter form they just so happen to use for those wonderful colonoscopies. (Note to self: ask Maureen if I have one of those bad boys sometime soon.) 

          At least I probably won’t wake up all groggy and nauseous. I digress.

          Maureen says she wishes they would’ve announced the surgery on Monday, the day before. I understand why – less time worrying and brooding for me. I told her, “Sure, drop it on me the day before and send me into shock overload!” Imagine that conversation: “Oh, by the way, you’re going to have a surgical procedure on your heart tomorrow.” Ugh!

          Back on a serious note, though, I’m so glad they’re letting Maureen stay with me that night. They’ll be observing me for a day or so. It’ll make me feel so much better to have her by my side, even if I don’t actually need her for anything. (I’m sure I will! And she says it’s the least she could do to help the staff deal with me!)

          Tuesday is going to be a very long day. I know I’m going to want to go home. I’ll be OK. If not? I guess you’ll have to hear that from Maureen. Either way, I want you all to celebrate and be happy. And always remember: #WeAreDementiaStrong.

          – Brian

          Hospice and Palliative Care

          Is There a Difference Between Hospice and Palliative Care?

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

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

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

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

            Hospice Care

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

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

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

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

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

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

            Palliative Care

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

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

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

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

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

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

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

            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.