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moving to assisted living

How Do We Downsize as Parents Move to Assisted Living?

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Our marketing manager’s mother moved to assisted living recently. I wish he had picked my brain a bit more about this critical question: how do we downsize as our parents transition to a care facility? There’s a lot to consider – powerful emotions, memories, logistics and more.

Even at 75, the move was quite unexpected. She had moved in with him in a big, new house he bought for her to live her “Golden Years” in comfort. That arrangement was short-lived, halted by a fall that made home care impossible. (A call to remember unexpected emergencies can easily derail care plans.)

His mother had A LOT of worldly possessions. From what he shared, she was on the extreme end of clinging to cherished memories – and things she “might still need” that hadn’t seen the light of day in decades. 

The transition was difficult. That his mother had worked in advanced care homes for most of her 50-year nursing career did little to help with downsizing for the move to assisted living. She was too busy helping others to prepare for when “the time would come” in her own life, he said.

With our marketing manager’s permission, I’m using this real-life example for a blog on the downsizing process as our loved ones move to care facilities.

Tips for Downsizing Belongings as Loved Ones Move to Assisted Living 

Their experience isn’t unique. I’ve seen it more times than I can count in nearly 3 decades as a professional life-care planner and Board-certified Patient Advocate in Florida. Life’s journey challenges our resilience. One such transition that often proves to be emotionally charged is the move from a cherished family home to an assisted living facility. For many seniors, downsizing can be overwhelming – even paralyzing.

Here are some compassionate tips to help elders and their families navigate with grace and understanding.

Empathy is Key

We talk often about being a more compassionate care partner. But we’re all human, and we sometimes fail to achieve that standard. Before diving into the logistics of downsizing, we must acknowledge the emotional weight of this transition. 

Show empathy toward your loved ones as they grapple with leaving behind a lifetime of memories. Imagine leaving your own home filled with memories – each corner, each piece of furniture, holding a special story. Even if your loved one embraces the move to assisted living as necessary, it’s tough letting go.

It’s more than letting go of belongings. It’s bidding farewell to a chapter – or many decades of chapters – in one’s life.

Validate this experience. Take the time to listen. Let them share their memories, their fears and hopes for the future. It’s natural … and therapeutic.

Emphasize the Positives

I know, we’ve all heard “think of the positive” when it’s the hardest thing to do. But we must try, even if it’s a struggle.

Amidst the challenges of downsizing, highlight the positive changes that await your elder loved one: less housework, new friendships, and exciting opportunities for hobbies and adventures. Focusing on growth, purpose and fulfillment can help with anxiety and uncertainty. 

Look forward. Opportunities abound for enrichment and enjoyment – whether it’s joining a book club, playing games and sports, attending group outings, or rekindling artistic creativity.

Visual Reminders of the Chapter Ahead

Well before the moving process begins, display brochures and other promotional materials from the assisted living facility as visual cues for the new life that awaits. (Or search pictures, videos and testimonials on your smartphone.) Remind your elder loved one of the vibrant community and exciting possibilities that lie ahead. 

Allow them to envision taking control of their future in assisted living, nurturing a sense of anticipation and excitement. Subtle, positive reminders allow us to approach downsizing with more enthusiasm. 

Plan with Precision

Are you downsizing yet? I hope not, because you should first have a plan in place. Take the time to understand the layout of the new living space dimensions. Creating a scaled drawing can streamline the decision-making process regarding which furniture and belongings will fit comfortably. 

You’ll likely need to do less with more and prioritize functionality. Sensible choices will keep certain elements and optimize the space to make assisted living feel more like home.

Protect Precious Memories

Safeguard sentimental items such as photo albums and special gifts. Designate a safe space for these treasures to ensure they are preserved during the move. Prioritize these items in preserving cherished memories and family history. 

Encourage your loved one to take special care in packing and storing, ensuring items are kept secure and easily accessible. (You may uncover personal items that mean something special in your own life narrative!) Emphasizing that these precious memories will indeed be preserved eases the emotional impact of downsizing for a move to assisted living.

Remind your loved one that while downsizing WILL involve parting with some belongings, but by preserving these sentimental items, they’ll hold onto the memories that matter most. 

Allow Room for Indecision

Decision-making takes time. Provide options for undecided items, allowing your loved one the space to process and reflect on their belongings. Remember the “yes, no, maybe” pile you use when clearing out your closet? Do that! An “undecided” category alleviates pressure and provides a sense of control. 

By respecting their need for deliberation, they’ll feel a sense of agency and autonomy, empowering them to make decisions that feel right for them. Ultimately, the downsizing process is about more than just decluttering. It’s a journey of emotional discovery and transition.

Share the Gift of Giving

Appeal to your loved one’s altruism. Add a meaningful dimension to the downsizing process by donating items to local thrift stores or charities. By parting with belongings that they no longer need, they can know their possessions will benefit others in need.

Highlight the positive impact their donations can make in the community, whether it’s providing clothing for those experiencing hardship, furnishing homes for families in need, or supporting nonprofit causes they care about.

Consider Professional Support

If the downsizing process becomes overwhelming, consider enlisting the help of a professional organizer or senior move manager. Here at Caregiver Support and Resources, LLC, we often refer our life-care planning clients to KRB Move Management of Palm Harbor, FL.  

Professional organizers and senior move managers are trained to navigate the complexities of downsizing with sensitivity and expertise. They can help by sorting belongings, packing and coordinating logistics. They may also offer emotional support in parting with possessions and transitioning to a new home.

Many such agencies can also tackle the entire moving process for you!

Moving to Assisted Living: Be Generous with Understanding in the Downsizing Process

Approach the downsizing journey with patience, compassion and generosity. Your parents or elder loved ones are going through a lot when moving to assisted living. Your understanding and thoughtfulness can make a profound difference in how they embrace this new chapter of life.

Strive to preserve your loved one’s dignity and autonomy throughout the downsizing process – and every other step in the life-care journey. If you need help, that’s what I’m here for. 

Because I Love You caregiver support book

Introducing ‘Because I Love You: My Book About Me’

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I’m thrilled to extend a warm invitation to embark on a journey of compassion – amplified by empowerment through preparation. I recently dusted off a document I use with all of my life-care planning clients here at Caregiver Support and Resources, LLC in Clearwater, FL. It’s called “Because I Love You: My Book About Me.” It’s available right here on this website for FREE as a downloadable e-book!

This book is more than a resource. It’s a heartfelt testament to the beautiful journey of caregiving – or care partnering, as we prefer to call it – rooted in both professional expertise and personal experience.

When you click the link to download, you’ll notice a collection of documents that chronicle and organize LITERALLY EVERYTHING from medications and doctor visits to estate plans and end-of-life wishes. You see, that’s the crux of a truly compassionate aging journey – for the care recipient and the care partner, in good health or bad – in which decisions are already made to address:

Planning for the Beautiful Journey: A Life Worth Living 

With nearly three decades of experience in life-care planning, I’m deeply passionate about guiding individuals and families toward a life worth living. 

From professional experience, this e-book helps individuals and care partner teams to spell out current aging and health care realities while planning for an untold future. From personal experience, it’s a way for elders to lovingly guide their own aging process by leaving a roadmap for their desired care. 

No ambiguity. No fights. No resentment. Just a clear path toward enjoying life’s “Golden Years” ON YOUR TERMS! 

Which brings us to the inspiration for this book. 

The Genesis of ‘A Book About Me’

It’s been a wild and wonderful journey as a care partner to my life partner, Brian LeBlanc, who bravely lives with Alzheimer’s disease and vascular dementia. He has profoundly shaped my understanding of the daily realities individuals and their care partners navigate. I thought I had “seen it all” in decades of professional work. But until you’re in it, you just don’t know. 

Brian’s foresight in recording a video titled “A Message To My Future Care Partners” inspired me to create this book, ensuring that families advocate for care tailored to their loved one’s wishes. He was so aware and cognizant back then. He knew a day just like today would come, when his dementia would prevent him from managing his own care.

What better way than to record a video to provide personal preferences in ways that can’t be disputed or misunderstood? What better way to begin the painful process of saying goodbye?  

How This Book Works

Through four carefully crafted steps, we will navigate the complexities of planning for both the anticipated and unforeseen aspects of caregiving.

Step 1: Let’s Get to Know Each Other

In this foundational step, we build mutual understanding and trust. We gather essential information, including medical history, care partner contact details, legal documents, and personal preferences. Our goal is to keep decision-making in your hands as long as possible, ensuring that your unique identity is honored beyond your diagnosis.

Step 2: Tools for Living Your Best Life

Here we explore what brings you joy and purpose, leveraging our vast network of resources to support your hobbies, interests and spiritual needs. Whether it’s participating in clinical trials, advocating for others, or exploring old/new passions, we’re here to empower you every step of the way.

Step 3: Taking Care of Those Who Take Care of Us

Our primary care partners are the unsung heroes of the caregiving journey. They deserve support, time off and resources. In this step, we will focus on providing care partners with the tools and resources they need to sustain caregiving with compassion and resilience.

Step 4: Final Stages Planning

As we approach the final stages of life, it’s essential to ensure your wishes are honored with dignity and respect. This step creates a personalized plan for safe and proper care, end-of-life arrangements, and emotional support for both you and your care-partner team.

‘Because I Love You: My Book About Me’

Download this e-book to prepare a transformative journey of caregiving, advocacy and love. Together, we will build a plan for a life worth living. At Caregiver Support and Resources, LLC, our mission is to build a dedicated care-partner team, smooth the road ahead, fill potential potholes that might lead to crises, and ease the challenges that await us.

I hope this book helps. Click the link in the sidebar to download your FREE copy.

assisted living

4 Ways to Make Assisted Living Feel More Like Home

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By Maureen Rulison
Caregiver Support and Resources, LLC

Moving into an assisted living community, nursing home (or any other long-term facility) can be an extremely difficult decision. The main goal? Receive top-notch care while making it feel like home.

Last time, we addressed the preparations that should be made – as part of a great life-care plan – to ease stress BEFORE the move. Now, we’re taking time to address the move itself, the little things everyone can do to make the new digs feel how they’re supposed to.

Like home.

Assisted Living: Creating ‘No Place Like Home’

There’s no place like an actual home, but roughly 70% of U.S. seniors eventually require some level of long-term care. There are pros, cons and other factors to weigh in the decision-making process. Hopefully you’ve made the best possible decision that ensures compassionate care, dignity and foresight – for good health and bad.

Our loved ones and care partner teams can ease the transition by making the new dwelling feel like home right from start. It doesn’t have to feel like living in rented space. Your loved one may require advanced care that couldn’t easily be provided anywhere else. But their assisted living space can really become home — a place to feel comfortable, nurtured, honored and safe. 

1. Add Personal Flair

Everybody has a personal style, whether it’s obvious or not. We have our own preferences for how our spaces must look and feel. We understand why some say assisted living feels like a hotel. They’re generally designed to be sensible and appealing to what most would consider “comfortable.” (Nursing homes and other advanced care facilities may feel like full-fledged hospital environments.)

But residents have power. They can choose. They can include decorative items, pictures, cherished heirlooms and anything else their little hearts desire.

Change the aesthetics. Decorate, decorate, decorate! Add a favorite scented candle, some prized sports memorabilia, and/or items professing their religious faith. How about their favorite art and music? We prioritize person-centered care for a reason. It honors and empowers the person at the center of care. 

2. Get Involved

Becoming connected with new friends and participating in activities can help folks feel welcome in a new place. It helps to avoid feeling isolated and depressed – which studies say affects many long-term care residents and actually precipitates worse health outcomes. 

Moving to assisted living, it can be tempting for some to stay in their room, especially if they’re shy. Your loved one may naturally feel life has changed for the worse. But it doesn’t have to be that way!

Socialization can be the perfect medicine. Some really simple ways to become involved include eating in common areas, chatting with fellow residents and staff, being a good neighbor, and welcoming visitors. Feeling bold? Take a peek at the community events calendar – there are almost always special trips, sporting events, museum visits and festivals outside the facility, and other internal events like board games, card nights, Bingo and so much more! 

3. Stay Connected to Family & Memories

Hopefully, your loved one’s move to assisted living is just another step to many great memories to come. Family and friends can AND SHOULD continue to be involved. We all should be able to continue enjoying fulfilling, meaningful and engaging relationships for A LIFE WORTH LIVING. 

But reality tells us family and friends can’t always be there. That’s OK! Connection can be found anywhere these days.

Photos evoke feelings of connection to those we care about most – especially for our loved ones living with dementia. Choose a few favorites to hang on the wall. Fill a large tabletop album or scrapbook with snapshots of yesteryear. Include memories of special occasions, travel or vacations, friends, family and beloved pets. 

Technology is being used increasingly to facilitate communication and store memories. Digital picture frames cycle through hundreds or even thousands of cherished photographs. Loved ones may compile music playlists on Alexa (like the ones my life partner/care partner, Brian, uses to bring clarity to foggy moments with dementia). A lot of adults entering assisted living today have been texting for years. A quick text, call or FaceTime with the grandkids often means more than words could express.

4. Call It Home

Call it what it is. Call it home. 

There’s no better way to make senior living feel like home than to call it home. Whether you’re moving into independent living, assisted living or a skilled-nursing home, refer to the new space as home as often as possible. 

Yes, it’s a new space. It might not feel like home right away. That’s also OK! But words matter. They allow us to make sense of new environments – to be comfortable knowing we’re cared for and that our needs are being met. 

That’s the essence of home.

Be Patient & Positive: Assisted Living Can and Will Feel Like Home

During this process, remember to be patient with yourself, loved ones and the rest of the care-partner team. Moving to assisted living is an adjustment. We can’t expect to feel at home immediately. It’s a brand-new space that just begs US to make it what we want it to be.

Rest assured, as time goes by, your loved one will settle and become more comfortable. Of course, life-care planning gets everyone ready for all the changes – big and small.

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

dementia-inclusive faith community

What Does a Dementia-Inclusive Faith Community Look Like? 

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A gentleman comes to church on Sunday. He is unsure where to sit. He doesn’t recognize anyone. And he can’t recall the pastor’s name. No, he isn’t a newcomer to the church. Far from it. A local businessman for more than 40 years, he has headed up several church committees over the years. He may have even served as a deacon.

Today, though, this man experiences difficulties. Once upon a time he would mingle and fellowship with longtime friends. He would be excited and enthusiastic to hear the pastor’s message.

He’s living with dementia. 

His longtime friends and even the pastor aren’t sure how to “take” him. They treat him much differently these days – not that they necessarily mean to. The man can easily get irritated when they don’t understand him or when he struggles to remember part of the service or a formerly familiar hymn.

His church should strive to become a more dementia-inclusive faith community. But so many faith communities fail to live up to this standard – or even to make efforts toward being more dementia-friendly. It’s endemic across all faith traditions and denominations. Why? They often don’t know what to do. What’s more, they often don’t have anywhere to turn to learn how to become dementia-welcoming.

How to Make a Dementia-Inclusive Faith Community

How can faith communities be more accepting to persons living with dementia? The loss of cognitive functioning — thinking, remembering and reasoning — is very real. People’s lives can be severely impacted, especially in later stages.

Our friend with dementia above, like the millions of Americans who have some form of the disease, has just as much right to worship as anyone else. There’s still a soul in there craving connection.

Here’s some easy advice to create a more dementia-inclusive faith community environment:

Keep In Touch

Be sure to keep track and keep in touch with fellow congregation members living with dementia. Don’t ignore them. Don’t overlook them. Include them. They still have plenty to say and contribute, even if communication is difficult.

Even family and close friends of PLWD struggle with keeping in touch. They often don’t know what to say or how to act. Just talk to them (because they’re still normal). If nothing else, a friendly smile goes a long way. 

And don’t forget the care partners of PLWD. They’re on the front lines of caregiving, often in circumstances hard to understand. They deserve love, nurturing and fulfilling worship on their terms, as well. Heck, they’ve earned it.  

Education

Be sure to educate the congregation about the realities and needs associated with dementia. Even clergy members can benefit from education and training on dementia-inclusivity, as many best practices and protocols have evolved in the years since their formal education. 

Provide important resources within your faith community. (This guide by our friends and partners at US Against Alzheimer’s is absolutely fantastic.) Just knowing helps to reduce the stigma and raises awareness about cognitive, mental and social health.

Invitation 

Be sure to extend an invitation to church events to members with dementia, as well as their family, friends and care partners. Urge them to attend outings, special services and more. 

So many assume that because a person is living with dementia that they can no longer participate meaningfully. That’s just absurd. (You know what they say about when we ass-ume, right?)

Ministry

A very helpful tactic is to start a small group or committee to assess options and resources for church members with dementia. The group may prayerfully examine ministry opportunities, because there are so many ways to cater to groups with special needs.  

Pray

Be sure to pray. Remain in prayer. And prayer isn’t just for Sundays – or whatever your Holy Day may be. You should pray not only in person, but via a daily or weekly prayer chain.

The higher power, known by many names, responds. Sometimes in ways we don’t understand. He may point us to answers, use us as teaching examples, or simply allow us to enjoy our loved ones as they are. Sometimes that’s all the message we need. 

Don’t just make the service dementia-welcoming. Open opportunities for service through the community!


Other Great Tips for Dementia-Inclusive Faith Communities

  • Maintain a quiet area in your place of worship where a person can go if needed during service or event. 
  • Plan for and provide worship services and related events at home and in care facilities.

Dementia Friendly America also says that faith communities ought to examine existing resources in home communities. Some possibilities include:

  • Youth groups interested in service projects
  • Members willing to provide meals for other church-goers in need
  • Adult Sunday school or discipleship group empowered to provide respite care
  • Prayer groups enlisted to pray for people living with dementia and their care partners
  • Service groups and service days dedicated to practical projects
  • Singing groups or bands willing to perform familiar religious music
  • A congregational van and driver to take members to services and/or appointments

We Are Dementia Strong is Committed to Dementia Inclusivity in Worship

As a 501(c)(3) nonprofit, We Are Dementia Strong is committed to seeking and providing resources for persons living with dementia and their care partners to achieve a life worth living. In coordination with other nonprofits serving the continuum of dementia care, we are also committed to establishing and mentoring dementia-inclusive faith communities and support groups nationwide.

These tips (and more) will help create inclusive faith communities for those with dementia. Let’s be sure to welcome people, like our friend at the beginning who wants only to worship and feel spiritual meaning, even if he can’t express it as he used to. Let’s welcome him (and countless others) with open arms – with that love of God. 

If you need help planning or researching options, reach out at maureen@caregiversupportandresources or download our free e-magazine below!

joy of dementia

Joy of Dementia: The Path to a Life Worth Living 

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By Brian LeBlanc

Today we’re doing a little happy dance because we’re talking about the joy of dementia. Yup, you read us right (and you can hear us right on this very topic in our latest podcast). 

Maureen and I have been on this joy of dementia kick since returning from the Pioneering a New Culture of Aging Conference last month. One of my presentations alongside our friends at the Reimagining Dementia Coalition was titled “The Joy of Dementia (You’ve Gotta Be Kidding!)” 

One could be forgiven for believing only the latter half of that title. But it’s not a joke. No one’s kidding. You can and SHOULD strive for a life worth living with dementia.  

We’re uncovering so many ways to find this joy. (There’s a lot to unpack here, so have a snack ready while reading this!)

The Joy of Dementia (You’ve Gotta Be Kidding)

This isn’t so much about what the Pioneer Network Conference presentation was, but how we can strive for all this. We’ve borrowed a quote from Marianne Williamson: The joy of dementia is acceptance, which allows us to feel joy. “Joy is what happens to us when we allow ourselves to recognize how things really are.”

So poignant. So important to know. So important to understand. 

Acceptance.

Accepting Dementia … On Your Terms

The first step is accepting a loved one or yourself living with dementia. Just accepting it. Not trying to change it. Not trying to predict the outcomes. Not trying to force anything to happen a certain way, or not happen a certain way.

Maureen and I say we both live with dementia – in body, mind and soul. My beautiful life partner/care partner can help me and schedules things ’til the cows come home – appointments, meetings, meals, activities, relaxation – but then dementia laughs. 

We’ve accepted that days will be hard and foggy. We’ve accepted we’re only human and that we make mistakes and get frustrated. We’ve accepted that life has a 100% mortality rate – even without dementia.

Most importantly, we’re working daily to always accept that we love each other dearly on this path together. Of course, laughter is always the best medicine. And I’ve now begun making it a point to express gratitude for life’s daily blessings.

Life Isn’t Over

People tend to think of any serious medical diagnosis as a life-ending event. Sure, cancer, diabetes, heart disease, dementia, what have you may be terminal, but you may also live years – decades even – past hearing the terrible news. Yet the underlying sentiment is that life is over or fundamentally changed by a diagnosis, at least the part that’s good or that matters.

Pardon my French here, but the Ragin’ Cajun is about to come out: That’s bull shit.  

I’m still me. I don’t stop being me because I have Alzheimer’s disease and vascular dementia. I don’t stop being me because I have heart issues and diabetes.

There IS LIFE beyond diagnosis. As Maureen says, “At the end you can look back and be grateful for all that you’ve experienced, all that you’ve loved, or you can look back and say, ‘Wow, I really wasted that time.’” Embrace the positive and do what you can to keep it.

Feelin’ Good

We went to the Michael Bublé concert the other night. He’s absolutely one of my favorite artists – the 21st-century Sinatra with a newer-age take on the upbeat, jazzy swing music that we danced to when I wore a younger man’s clothes. My favorite song? “Feelin’ Good!” It’s so positive, uplifting and in-your-face confident! 

It’s basically my anthem. I definitely want it played at any end-of-life celebration that’ll be held long after dementia takes everything (but I’ll still recognize friendly faces and happy music). And when I kick the bucket, “Feelin’ Good” had better be played at whatever wake, service or party Maureen throws (or I’ll haunt her!). 

So let’s focus on finding the joy of dementia through feelin’ good!

We’ve also started going to the gym! It gets the blood pumping. When I get back, I feel … SO … GOOD! My brain feels more clear and aware. We’re getting in the pool, doing yoga, the whole nine yards. At first, I was a bit hesitant – or rather downright against it. It sounded miserable. Something in my brain told me, “No, you’re fine. You don’t need it.” But I haven’t been fine for a long time. 

Exercise is great, whether you’re a person living with dementia or aging in perfect health. You could be fixing health issues you never knew you had – or preventing things that haven’t happened yet.

We’re aiming to sustain this part of the joy of dementia, as well. As Maureen says, “Who wouldn’t be joyful sitting in a hot tub?” (Anyone wanna help with holding us accountable now?)

Joy in Music & Art

Music is just … wonderful. I play it every day, strumming along on my guitar to soothe the nerves. (Have I said this before? Oh, well, it’s that important.) 

It’s not just playing music. Just sitting and listening to my personalized playlist does so much to clear the fog and bring clarity and light to the world. That’s how powerful music and other art forms are, and how it affects the brain.

In Maureen’s career as a Board-certified Patient Advocate, she often plugs music to families as the best medicine and therapy for dementia. Almost 100% of the time, she says, the families refuse to do it. I believe that most families either don’t want to put in the work to develop a playlist – or they lack confidence that their loved one could work a device that plays music. 

Life would be utterly joyless without music. Don’t deprive your loved one of that joy.

Friendly Conversation

Even body language and tone of voice when approaching someone with dementia has an impact. You know what I mean: the hushed tone, the head tilt, the overly exaggerated hint of sympathy. “How are you? Are you doing OK?” 

It’s meant with the best intentions. You ask because you care. But can you see how that undertone only perpetuates the “tragedy narrative” and stigma around dementia. 

It automatically assumes the worst. It assumes that because I have dementia I must not be well. That a person living with dementia must be struggling. That it’s all bad. That my existence is now defined by dementia. And that all this “suffering” must somehow be kept quiet.

Now, I may indeed be struggling that day. I may also be very aware, functional and happy. But as much as my Alzheimer’s makes sure I need reminders, I don’t need that reminder.

Our response to the “tragedy narrative” also has so much to do with the joy of dementia. Should someone approaching a friend living with dementia on the street be corrected or shamed for not knowing? Absolutely not. Should we let it ruin our day? Nope! 

Does It Really Matter?

I’m a VERY social guy. I love telling stories – especially funny ones. If everyone’s laughing, having a good time, enjoying the conversation, does it really matter if I flubbed up a detail?

Before reacting or responding to what a person living with dementia says, ask yourself, “Does it really matter?” Does it matter if I misremember a small part of something? No, and Maureen loves this example from our conversations for this reason.

Now, if we’re at the doctor’s office and I misremember a detail – or go on a tangent about something completely unrelated as I sometimes do – that does matter. And I thank Maureen for being so spot on about my care! (The doctors would probably be treating me for swine flu, if the details were left to me!)

Family Time

You didn’t think I’d forget family, did you? There’s always time for family! Family is the icing on the joy of dementia cake.

We love spending time with our young granddaughter, Emma. And the happy news is we’re going to have another grandchild – another little one to SPOIL! (We’re also going to have a very jealous 4-year-old, but she’ll get used to it. Emma will always be special as our first.) 

Quite often, the family is the inner circle of your care-partner team. They’re the ones taking you to doctor appointments, planning meals and activities, spending quality time, etc. They build new memories – and help you remember old ones while you can. They help bring the joy. 

And we’re proud to call you part of our family. Friends like you help, more than you know, with our joy of dementia.

Peace

-B 

Living with Dementia (and Gratitude)

Living With Dementia (and Gratitude)

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By Brian LeBlanc

In a world that can be so unfair, so dramatically cruel, so unforgiving, it’s hard to stay in a positive mindset. Even if that’s literally what you do every day – try to channel the happy, the humor, the spice of life. In the back of your mind, there’s always something … something that can, in whatever way, push you off center and make it hard to appreciate life’s true blessings.

I’m living with dementia. You know this. But I’m also trying something new these days. I’m living with and expressing gratitude – every day – even if it hurts to do it. You may have noticed on our Facebook accounts – particularly my page and the #WeAreDementiaStrong page – I’ve been sharing gratitude posts daily. (OK, not every day. I have Alzheimer’s, remember? Forgive me for, uhhmmm, not remembering or being too foggy from time to time!)

But the practice holds true, for so many reasons. Maureen (my beautiful life partner/care partner) and I particularly love the sociology guru Brené Brown, who found in 12 years of research examining thousands of interviews and over 11,000 pieces of data that the most joyful people have one thing in common: GRATITUDE. 

So What Are My Gratitude Posts About? A Life Worth Living With Dementia 

So after a few cups (or a pot) of coffee and some reflection, I prepare a gratitude post. Just to throw it out there. A feeling driven from some experience with dementia often brings me to a powerful realization. Being grateful for the good things we do have has a wonderful way of lighting the darkest paths in life. 

It just feels good. It makes others feel good. 

I’m living with dementia, but thinking about the positives really helps to beat the depression that always seems to slink in. I’ll share a few examples.

Gratitude for Capturing Memories

A person living with Alzheimer’s and vascular dementia being grateful for memories? What’s that called, an oxymoron? 

But it’s true. I’m just capturing them in my own way. 

Photos.

I’m a pretty decent photographer – my marketing background probably just gives me an eye for eye-catching things. But just with an iPhone I’ve been able to capture some of the most remarkable moments. (You’ve probably seen so many photos of the dolphins, snowy egrets and other ocean life right from our back patio overlooking beautiful Tampa Bay.) 

But it’s also the unremarkable moments. The everyday moments. The meals with Maureen, family and friends. The happy times shared in happy places. 

You can see all of the above in real time on our social media. I look through my phone and see them. I remember. And when I can’t remember, they’ll still make me happy. And when I’m gone, they’ll help others remember.

Gratitude for Travel & Experience

Everyone should travel and experience the world. Not everyone gets to do that. Maureen and I are fortunate to be able to travel for business and pleasure. Just last month, we traveled to beautiful Denver to present for We Are Dementia Strong at the Pioneering a New Culture of Aging Conference. 

We’ve been all over Florida – and many states and countries beyond – to humbly receive recognition for our dementia advocacy and education work.

But sometimes the small, unexpected trips around here – perhaps to a winery, a concert, an ice cream shop, or even just a beautiful walk by the bay at sunset –  are most meaningful.

Gratitude for Abilities

Just the other day, I put together an IKEA bookshelf for Maureen’s home office. Unless you’ve looked at easy directions in English and had no idea what they said, it’s hard to truly appreciate such an accomplishment. 

Now, directions for some may be hard to follow in general. Try doing it with dementia. Days of focus and clarity are getting fewer and farther between. Maureen can tell when I need help when my language turns “colorful.”

But that day, I did it! I felt capable again. The ability and knowhow is still there – even if it’s sometimes hard to find it in the fog.  

Gratitude for Music

The benefits of art and music for dementia care have long been documented. They’re better at restoring memory and cognitive skills than any expensive medication or treatment.

Think about it. Music takes us back. It recalls feelings from a first concert, a first dance with that special someone, a father/daughter dance, a smell, a taste, a distinct feeling from a profound moment long forgotten. It fires those dormant neurons!

I play music everyday – usually just strumming on my guitar – in order to keep my anxiousness at bay, to help clear fog, to calm myself when I get upset. It was always such a big part of my life, ever since I first learned to play when I was about 9. 

There’s always a song that can turn your anger to happiness and confusion to clarity. 

Gratitude for Compassion

It’s not easy to be me along this path of Alzheimer’s and vascular dementia. But it’s also not easy to help me along that path.

Caring for anyone living with dementia is no picnic. It takes compassion and understanding. The things that we’re going through, it’s just not my fault. If I can’t remember something, or if I spend the better part of a week on the couch in a fog, it’s NOT my fault. 

I didn’t choose this. A compassionate care partner (like Maureen) understands that. She works with me, not for me – and serves out of love, not duty.

Gratitude for Maureen

You didn’t think I’d forget her, did you? The only reason I’ve put her last (but certainly not least here) here is because the majority of my gratitude posts are devoted to her!

I’m always grateful for Maureen. Every day. Every single day. 

She’s the appointment maker. The organizer. The rememberer of things I can’t remember. The filler of blanks. A comforter when I’m upset and overwhelmed. Heck, just the other night, I was having my dementia-related hallucinations – I call them “visitors” – and although she can’t see or hear them, she often starts yelling at them along with me (or even throws a slipper in their general direction).

It comforts me to know she’s my protector and always on my side against these trials – real and imagined. I wouldn’t be alive today without her. I love her so much!

So, Yes, I Am Grateful Every Day While Living With Dementia

I’m grateful for a lot more. Far too many people, places and things to mention here. 

I’ll continue with these gratitude posts as long as I can. It’s so much better than the alternative. If you stop – even a few seconds each day – to think about the good – it can make the absolute worst circumstances feel that much better. Trust me!

Peace

-B

expressing gratitude because I don't have cancer

Expressing Gratitude Because I’m Cancer Free!

By Brian LeBlanc

I’ve been in the room for “the talk” a lot. No, not that “talk.” The other talk. The scary talk. Lots of different types of scary talks, actually.

You know the talk I’m talking about. You know, when the doctor comes in the room in his white lab coat, looks down at the chart, and unveils some God-awful news. You pray it never has to happen to you … or a loved one … or a friend … or even your worst enemy.

But as you know, for some, it just happens. I first heard “Mr. LeBlanc, you have Alzheimer’s” in 2014. Then it was “Mr. LeBlanc, you have vascular dementia.” Scattered all around all that were a bevy of heart procedures, and let’s sprinkle in some diabetes for good measure.

So that’s why I’m so happy, excited, elated – absolutely pumped — to report that I DON’T HAVE prostate cancer!

But The Last Few Months, My Outlook Wasn’t So Positive

You understand. Any man over 50 likely understands. 

Getting up in the middle of the night to go. 

All the time. 

Not being able to go. 

Pain.

General discomfort.

The symptoms are enough to stop any man in his tracks. And for someone like myself with so many health maladies – having long since come to terms with my own mortality – you’d think I’d be used to it. Just another thing. Another thing that might kill me. That reality — whether it’s dementia-related illness, heart disease or the potential for prostate cancer – never gets easier to swallow.

Before the doctor did all the tests and rendered his verdict that I DON’T have cancer, my mind naturally went lots of places – related, unrelated and completely out of this world. And my dementia, quite frankly, didn’t help. 

Now, you know me. I try to have the most positive outlook possible. I bring humor into every aspect of life, especially in its darkest places. And, boy, did I go to a few of those places where humor couldn’t soften the blow.

What If I Need Surgery?

Surgery in advancing stages of Alzheimer’s and other types of dementia is risky. Any anesthesia beyond a mild sedative could send my mind into a permanent fog. As if that wasn’t already the case. My foggy mornings are becoming foggy days. My foggy days are stretching to foggy weeks. Weeks stretch to months where most of my days were spent not doing much of anything at all.

All the sudden, my important dementia advocacy and outreach work for We Are Dementia Strong and other affiliated organizations and networks … just … doesn’t happen. But that’s my life’s work. Our podcasts, our blogs, my talks all go on the back burner.

And that’s WITHOUT surgery and anesthesia.

I know better than most that my time, memories and cognitive abilities are finite. But if I had to have prostate surgery, would it be worth the risk of losing all that more quickly?

Creating Scary Alternative Realities

My dementia mind has a funny way of playing tricks on me. My neurons fire in the weirdest ways, creating crazy dreams, hallucinations and other experiences that feel so real. I could swear something happened, that I had some conversation or visited some place. Sometimes my reasoning and judgment just aren’t there.

So when thinking of this whole prostate thing, my mind created these alternative realities. I don’t even remember what they were. But Maureen, my wonderful life partner/care partner, tells me they were out-of-this-world bizarre. I apparently recalled conversations with the doctor that never happened. Maureen tells me that I often feared having to undergo strange, painful, experimental treatments that don’t exist in medical science.

But I was convinced they would happen. 

Forgetting The Problem Entirely

Imagine hearing for the first time that you might have cancer. Just might. Now imagine hearing the C word  “for the first time” again … and again … and again.

So, yeah, my memory clearly isn’t what it once was. While we often say dementia is so much more than memory loss, that’s obviously still a major part of it. So when Maureen would bring up an upcoming doctor appointment or that I’d be heading in for more tests, my first thought was always, “Why?”

Why go see this doctor whose name I don’t recognize? Why more tests? Cancer? What the heck?! It was like getting shot in the chest over … and over … and over again. 

But Thankfully, I Don’t Have Cancer. And I’m Using This Experience To Show Gratitude

Perhaps you’ve seen I’ve begun sharing gratitude every day on Facebook. (I keep mixing up the word with “gratification,” which are clearly two different things, but you get the point.) I share something I’m grateful for.

It’s a nice meditation. It’s a nice reflection. It’s a nice way to recognize that, while I may struggle with health issues and all of this nonsense, I still have so much to be thankful for. 

I’m thankful I don’t have cancer. At least it’s not that. I’m thankful for Maureen, the love of my life, without whom I wouldn’t be alive today. I’m thankful for doctors and clinicians, who may share scary news, but who want me to help me through whatever problems I can’t fix on my own. 

And I’m thankful for you. For having this platform to share. To educate. To advocate.

To be #DementiaStrong.

Until next time. 

Peace,

-B

dying with dignity

Dementia Meditations: Living on the Way to Dying

,

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

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