Denial is powerful toxin. Its wake can leave a stigma resulting from our fears.

stig·ma noun

A mark of disgrace associated with a particular circumstance, quality, or person.

History teaches an important lesson about unhealthy attitudes toward those affected by disease and decline. Leprosy, syphilis, cancer and AIDS are reminders of how easily fear can overshadow compassion and challenge our humanity.

Today 5.7 million Americans and over 50 million human beings around the globe are living with Alzheimer’s disease and related dementias. These brain diseases trigger some of our worst fears. Why? Because this collection of disease is confusing and life threatening, leaving those diagnosed in fear of disclosure.

In the wake of media attention to Sandra Day O’Connor’s dementia, I was asked by a journalist if disclosing a diagnosis to family and friends was anything like coming out for a member of the LGBTQ+ community. I find this question still percolating through my thoughts, in search of an answer.

Both groups face a difficult psychological process around the decision to disclose. Coming out isn’t their reaction to illness, though LGBTQ disclosure still carries stigma in some corners of our culture. So maybe both communities fear speaking the truth aloud to family and friends because that truth may give others license to treat them differently.

I’m contemplating this question, still in search of an answer.

Shortly before former Supreme Court Justice Sandra Day O’Connor shared her dementia diagnosis with the world, media mogul Ted Turner also announced his Lewy-Body diagnosis (Lewy-Body dementia or LBD is a form of dementia characterized by movement difficulty, vivid hallucinations and insomnia). LBD is the brain disease Robin William’s widow characterized as “the terrorist’s inside my husband’s brain,” following his suicide.

O’Connor and Turner have both earned my admiration for finding a voice to share their diagnosis; it had to take remarkable courage. And although we don’t know if either received an honest explanation of their condition from the medical community, what I found most interesting were the words each chose to use in their disclosure.

“Friends and fellow Americans,

I want to share some personal news with you. Some time ago, doctors diagnosed me with the beginning stages of dementia, probably Alzheimer’s disease. As this condition has progressed, I am no longer able to participate in public life. Since many people have asked about my current status and activities, I want to be open about these changes, and while I am still able, share some personal thoughts.”

                                                                                                Sandra Day O’Connor

“It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as                                                bad, Alzheimer’s is fatal. Thank goodness I don’t have that.”

                                                                                                Ted Turner     

The truth is dementia and Alzheimer’s in all forms remain fatal diseases today. So the only way to remove stigma and support those facing disclosure may be to understand that people of many different cultures, means, gender identity, political party, religion and race are living with dementia today.

This disease is indiscriminate.

Why is this so important? Because the harmful effects of fear and stigma include:

• Creating myths about disease caused by a lack of understanding
• Limited support to organizations working for change
• Reluctance by many to seek treatment
• A belief by those affected that the situation is hopeless

What steps can each of us take to remove the stigma of brain disease?

• Encourage diagnosis and treatment – Get yourself tested, too.
• Reinforce the notion that this disease isn’t a sign of personal weakness – Following diagnosis there can be a lot of life left to live, as fully as possible and for as long as possible.
• Don’t allow those in fear of or diagnosed with brain disease to isolate themselves – Support can only come by letting others in.
• Speak out loud about stigma – Become active in channels to change perceptions about brain disease.

The post Primal Fear: Disclosing a Dementia Diagnosis appeared first on .

The real question might now be: Is it up to family caregivers alone or should employers share in some of this responsibility?

In the late 1990’s as a high tech consultant with global responsibility, dad passed away from complications of dementia and mom moved in to live with my husband and me. Mom was beginning to demonstrate early stage dementia symptoms, but my husband and I were initially clueless and later in complete denial as our lives flipped upside down.

My husband called from the emergency room after another of mom’s falls. I stepped out of the executive meeting to speak softly so others wouldn’t hear. The exchange began: “I’ll get a flight back tonight. No, there’s nothing you can do tonight. I feel awful you have to deal with this alone. You’ll be home soon enough to take over…” And so it went, it was like a familiar tune someone carelessly hums that’s now stuck in your head. I returned to the meeting feeling helpless and hopelessly distracted.

During our 18-year dementia journey, no one at work spoke out loud about the challenge of elder care. In the high tech world, women only whispered about the impact pregnancy might have on their career growth. The thought of walking into my boss’s office to discuss the true time required to take my mom to doctor’s appointments was inconceivable.

Can we manage the role of caregiver with career? Or are we destined to exit the workforce in droves taking up caregiving while shortchanging our own future physically, emotionally and financially?

The good news is workplace stigma of caring for an aging loved one is changing. The bad news is it isn’t changing fast enough.

In a newly released whitepaper, “Taking Care of Caregivers,” Facebook highlights a cultural shift for employees with elder care responsibility by incorporating existing community resources with emerging business platforms. The big benefits are resources available in the workplace and protected under the company’s HR offerings. Although unproven, the hope is you’ll focus on work, openly support your caregiving responsibilities and grow your career. The motivation for this change is it’s good for you and for your employer.

ReACT (Respect A Caregiver’s Time) and AARP teamed up to produce

“Supporting Working Caregivers: Case Studies in Promising Practices,” which identifies companies trying out traditional and innovative business practices to specifically support employees with elder care responsibilities.

What if you don’t work for one of these enlightened companies? What can you do while waiting for the culture to change where you work?

Four Things to Remember:

• Accept that you cannot do it all: Identify what you need to be successful in caregiving and make sure you get it. Don’t devolve into the pity party beginning with, “no one else will help”. Accept that your immediate or extended family may not be your primary support network. And if that’s the case, move on.

• Find your tribe: Identify resources who support your caregiving responsibility. If your company doesn’t offer eldercare consulting, find a service that does. There are many free services for information and support like the Alzheimer’s Association 24-hour helpline (800-272-3900).

• Push aside feelings of guilt: You didn’t cause this. Even on the days that your loved one’s behavior suggests you are wholly and totally responsible. Understand it’s the illness and not your loved one talking.
• Know you will lose patience during caregiving: Whether it’s at yourself, your loved one, your job, the medical community, fate or the world you will lose patience while caring for a loved one, especially one with a brain disease. Walking a tightrope between your work, caregiving, family and your own health won’t allow time to take a walk or go to the gym. Instead develop strategies that aren’t time bound: tune out “in place”, step away, smile and nod or excuse yourself and scream into a towel. Do what quickly disconnects you from the emotion of your most stressful situations.

The post Balancing Caregiving and a Career appeared first on .

As a young child eager to please her mother, I promised.

When I was 38 years old, my father began to decline. He’d spent years caring for others and knew life’s endgame well. With darkness in his eyes, he searched mine quietly pleading, “Promise me, you’ll take care of your mother.”

As a daughter eager to ease her father’s pain, I promised.

In 2004 my mother’s dementia grew too difficult for us to manage in our home. By honoring my promises, I allowed the situation to turn into crisis. Our only option became involuntary committing my mother to a psychiatric ward allowing stabilization of her terrifying delusions and hallucinations. With the support of family, I came to understand she could not safely return home and we moved our mother to a memory care facility.

I broke my promises.

Understanding now, my promises should have been about protecting my mother. Caregiver actions need to be about quality of care, not about fulfilling unrealistic promises.

As caregivers, we must push aside feelings of guilt to pragmatically assess our true capabilities for the benefit of our loved ones:

• Can you effectively manage your loved one’s daily medication routines?
• Can you realistically handle their declining mobility?
• Are you physically and emotionally equipped to aid your loved one in the activities of daily living (ADL) like bathing, toileting and dressing?
• Are you able to balance your life with the vigilance required to protect your loved one from wandering?
• And, are you willing for what can be an extended period of time?

There are a growing number of baby boomers advocating for change in the practices of cross-generational care. We’re interested in removing the duty-bound thinking our next generation may have for aging or ailing loved ones.

In order for true change, we’ll need to:

Add Long-Term Living to our plans: Planning for your first home, kid’s college and retirement remain major investment considerations in our lives. Given how long we’re living now, broadening the definition of fully funding our post-work lives in our pre and post-retirement thinking is critical. Seek out advice from those who understand long-term care planning to help avoid costly missteps.

Be proactive in our search for options: Independent, Assisted and Memory Care Living options have changed over the years. Living within a community that offers multiple levels of care instead of remaining in your home can provide flexibility as your needs and those of your loved ones change. Actively searching out options together long before you’ll need them will allow research into what’s available, access to waiting lists for openings and the right financial advice to fund your ultimate decision.

Include family and friends in our discussion and decisions: It’s easier if you know what your loved one wants instead of trying to guess in a crisis. Start a discussion before age or illness prevents you from participating, leaving critical decisions to others. Unfortunately death is a certainty, so plan a strategy to live life fully while you can. Being successful requires an open and honest dialogue about considerations we’re all uncomfortable broaching. These discussions may become the most significant change required in long-term family care planning.

Edward Jones has partnered with the Alzheimer’s Association to focus on financial planning for aging and ailing loved ones. You may find some helpful tips on their website here.

The post Life Lessons from Dementia Caregiving Promises Made and Broken appeared first on .

I think about the arc of my mother’s life as college sorority sister; to wife, mother and career; then my father’s passing; through the whimsical and friendly hallucinations she initially experienced; to the terrifying delusions that caused despair and injury; then the decline of advanced dementia and death.

The staff of the Memory Center asked me to thin out her closet because too many clothes only confused my once stylish mother. It reminded me how impeccably she would dress. Nothing clashed, not even the things you couldn’t see. However, in her illness she’d mix together outfits of plaids, prints and stripes.

In her late stages I’d drive to the side entrance of the memory center. From that vantage point I could see my mother’s window. I could see the outline of her heavy wooden dresser and the blue lamp, a treasured gift from my father. I could see the television she no longer watched, but I couldn’t see her. Some days I’d park and go in for a visit. Other days, sliding my foot to the accelerator I’d shudder from the intensity of my tears while biting back a scream from the center of my soul.

Dementia took so much from both of us.

How do you keep yourself grounded while living through the decline of a loved one with a debilitating illness? The simple answer: it’s not easy. We all know the statistics around stress leading to higher mortality rates in caregivers than non-caregivers of the same age. But there are options to consider:

Keep hope alive, give back together: Find inspiration from those living with brain disease and their care partners who muster the strength to speak out loud about this frightening illness in order to educate us all. There are ways for you and your loved one to be advocates at all stages of brain disease. You could support others beginning their journey by sharing your expertise and experience. Or you could further the advancement of science in finding a cure, a prevention or a treatment. Greg O’Brien is living with Alzheimer’s disease and as an acclaimed author of On Pluto, Inside the Mind of Alzheimer’s, he recently published an article in Psychology Today about our friends Steve and Judy Johanson and their gift of giving back through this debilitating illness.

Accept reality, you aren’t a superhero: No matter how much energy you put in, today you cannot stop the ultimate decline of a loved one after a diagnosis of dementia or Alzheimer’s. The time you have together may be short or long, science currently gives us no clear answer. Live your life together, fully. The best you can do as a care partner is to emotionally support your loved one in living a quality of life that matters while practicing proactive self-care for YOURSELF.

Don’t give into guilt, it’s a trap: Science teaches us that no progression is ever completely linear. The trajectory of Alzheimer’s for those living with brain disease and their care partners is a complicated emotional inverse of most progressions: As one declines, the other must advance.

The post Embracing Life with Joy and Wonder A Complex Dance Through Alzheimer’s appeared first on .

Are you one of them?

Thinking about the dementia journey my mother and I shared over 18 years; waves of powerlessness, loneliness and guilt always come first. They are the emotions I often felt as an uneducated caregiver. Trying to remember the good, my mind usually finds its way to the pain of my shortcomings.

In my mother’s lucid moments she’d talk about love. She and my father had been married 46 years before his death. Then as my mother descended into dementia her delusions afforded one last love affair with David. David was concocted through her illness and likely an amalgam of those who were kind to her.

No matter, she was deeply smitten.

At that stage of her dementia I found myself even more conflicted. Her 80-something giddiness over young love was palpable and I should’ve been happy for her. Instead I was oddly defensive over my long-gone dad and suspicious of this imaginary man courting my mother.

Boundaries are critical for all care partners supporting loved ones with brain disease. Although we’re advised to enter their reality, we also need to keep a grip on our own. Some balancing strategies you may find helpful:

• Just let go: You may pride yourself on being the best at heated debates, settling emotionally charged discussions or simply being rational in all of life’s challenges. With brain diseases like Alzheimer’s although you can enter your loved one’s reality you cannot often ‘win’ in their world. Suspend your need to fix, flatten or finalize. When safety is a concern, of course you’ll need to prevail, otherwise let go before escalation ensues.

• Desensitize from your emotional triggers: Spend quiet time reflecting on what triggers you most in your role as care partner. Is your trigger a phrase, a facial expression, a recurring struggle, or simply guilt and anger seeing those you love suffer? Pick a phrase you can remember easily. When under pressure, close your eyes and calmly say your phrase over and over to yourself as you breathe out and until your shoulders begin to drop back in place. Likely your loved one won’t even notice and you’ll have a moment to reclaim composure. In more severe cases of chaos, have an exit strategy; one allowing you to break the tension for all.

• Forgive yourself often: Caring for a loved one with dementia and Alzheimer’s disease can be a long and tiring journey. Although you’ll find moments of great fulfillment, you’ll beat yourself up for your missteps, too. Don’t be too hard on yourself. Remember it’s the disease, not your loved one you see in moments of tension. And it’s your loved one, not the disease you see in moments of lucidity. Treasure the moments of lucidity you share.

Personal survival strategies for care partners are essential to maintaining your health and stamina. Well-executed strategies can ultimately give you strength to provide ongoing care for your loved one. Studies show that stress leads to higher mortality rates in caregivers than non-caregivers of the same age.

Prepare yourself for a marathon, not a sprint.

The post Love: Lost and Found on The Edge of Alzheimer’s appeared first on .

Care Partners also experience a journey that plays out in stages when supporting a loved one. As parents disappear into childlike behavior or vibrant life partners shift to full dependence through the brain disease progression; even the hardiest souls will find challenge.

The first stage for any Care Partner is a sense of “Being Overwhelmed.” While those struggling with early stage dementia work hard to mask their symptoms, family and friends put energy into denial. Those living with dementia fear knowing because once confirmed independence could be at risk. Their family and friends fear knowing for very different reasons.

Year #6:

“I’m going back to Arizona this winter,” my mother says with her jaw set and her fists clenched. But I’m too busy to notice. I’m calculating all the ways in which she’ll need help: the cross-country flight, opening up the house and settling in for the season. Followed immediately by the phone calls pleading to come back home.

This would be her last trip.

In time a Care Partner’s world becomes defined by the second stage, “Being Tired.” It’s a mind-and-body slam of exhaustion coming from the continual balancing act of caregiving with the demands of work, family and personal health.

Not many days look like the popular depictions of the disease seen on television. Missing is the tension, frustration and complete vexation this illness produces.

Poise is elusive. After each emotional eruption comes from nowhere, Care Partners make silent promises to be more understanding, more supportive and less reactive. But as the next challenge unfolds we often repeat the same conditioned behavior resulting in unrelenting guilt.

Year #10:

My mother’s terrifying hallucinations and delusions return, they start slowly but are undeniable.

“Tonight she says they’ll kill her, take her to that room and pour the numbing stuff on her. There’s a man outside trying to get in. She’s trying to find her parents. She told me about the people who live in the trees outside her bedroom, bad people.”

And the recurring delusion, “She believes I’m being stabbed.”

Only through therapy do I understand the fear my mother had for me. She was losing control of her thoughts, her actions, her very self. And she understood completely; at least for a while. Injury to me played over and over in her mind; an act a mother couldn’t stop as plaques and tangles consumed her brain.

Through a long roller coaster ride with dementia, primary Care Partners simply wear down. Ever present and often revisited when a partner is most vulnerable is the stage of “Being Angry.”

Anger points in many directions and is often simultaneous at self, at the person living with the disease, at the medical community, at family, at work, at the care facility, at fate and at the world.

Year #14:

Her memory care facility announces the opening of a new wing allowing some residents to “move backwards” in their care. I blurt out to the Medical Director, “When will mom be transferring to the new wing?”

“Your mom isn’t a candidate. She’s too advanced in her dementia. But, Jim will be making the move,” the director gestures to the man on her right. Seemingly unaware of the discussion Jim shuffles his feet, looks at the ground and urinates.

His distraction affords me cover to slip away. Walking turns to running but I don’t make it to the car before the tears erupt. I’m angry and wonder, why am I so blind to my mother’s reality?

The last stage of Care Partnership may only come through grief’s journey after death. It’s one of “Achieving Understanding and Acceptance.”

As a dementia caregiving survivor, I’ve come to accept certain truths. We write about our experience because we face a disease that cannot be prevented, slowed or cured. We seek answers because the manifestation of the illness is frightening, perplexing and irrational to all affected.

How can you survive a journey through Care Partnership?

1. Let go of unrealistic expectations. Mountains of reference material exist that you’ll find helpful, however there’s no manual tailored to your situation. Know that you cannot do it all, you cannot do it perfectly and you will feel conflicting emotions as you ride the dementia rollercoaster with your loved one.

2. Identify what triggers your feelings of anger, guilt, self-doubt and exhaustion. Keep a journal by jotting down what you feel and the events driving those feelings. Don’t judge. Simply understand by disengaging from emotionally escalating situations you can better maintain your balance and your health.

3. It’s human nature to have hope in the face of adversity. Become empowered by your hope, which can be found in many moments of the journey. Hope that a cure will be found, hope that today will be better than yesterday for your loved one and yourself, hope for moments of lucidity or recognition, and hope that you may find patience and grace within the absurdity of this devastating brain disease.

The strength to walk a Care Partner path finds its roots in hope.

The post Are you a Care Partner? Surviving the Rollercoaster Journey appeared first on .

Much has been written about whether taking on a caregiving role strengthens or shatters the relationship you share with your significant other. I think the unfulfilling answer is, it depends.

My mother came to live with my husband and me after my father passed away. She had a few solid years of independence but the majority of her time with us represented a slow and deep decline into dementia.

Initially, she told us about the giraffes and elephants she saw hanging in the trees outside her bedroom window. Those animals represented a naïve and whimsical period we all passed off as simply her creative imagination.

Late one night, true fear manifest when we landed in the emergency room with my hysterical mother. She’d been fighting off winged monkeys clawing at her windows to take her away.

In the wee hours of that morning, I sat in the ER with my mother and my husband. We were engulfed by the antiseptic aroma only hospitals possess and marked time through the resonance of scurried footsteps down long tiled corridors.

There were the in’s and out’s of doctors and nurses, the hushed conversation of other patients with their extended families and the hum of high tech medical equipment.

Although surrounded by so much activity, I felt utterly alone.

Through my mother’s decline, my husband remained convinced in a rational-male-engineering way that we could fix things. I knew we were powerless over my mother’s illness, but not over our personal reaction to the crisis our family faced.

Through an 18-year dementia journey with my mother, I came to appreciate certain truths about caring for a loved one. The importance of partnership in caregiving was the most profound lesson. Together my husband and I focused on strategies to reduce the impact of caregiving on our marriage.

1. Recognize the significance of this life change: Caregiving is never an easy job especially for someone you know and love as they decline through illness or age. Acknowledge how your lives are changing, each in their own way. Don’t judge the emotions and fears each of you have about your caregiving responsibility. Instead work together to find common ground solutions even if they perpetually evolve.

2. Grieve the loss of your spontaneity: There’s no denying your life together has changed. Your ability to meet for dinner, catch a movie without planning or just run out for something will now require more intention. Remember: wrapping yourself fully in the caregiving role and isolating from everything else is never the answer. Find resources and support to give you time away from caregiving. Make time for both of you: separately and together.

3. Talk about everything but ensure the conversation is two-way: Reluctance to talk about difficult, high stress situations can apply to anyone but may be more prevalent among some men. Encourage dialogue by jotting down the raw emotions each of you feel throughout the week, then take turns sharing those feelings in the context of the situation you faced. Understanding each other’s trigger points can allow you to plan caregiving escape routes.

4. Draw closer by acknowledging the role your significant other plays in caregiving: Ask yourself: could I do what my partner is doing if our roles were reversed? Then force yourself to answer the question truthfully.

Caregiving pairs come in so many different varieties: you could find yourself caring for grandparents, parents, a spouse or partner, siblings, extended relatives or friends.

Devising strategies for yourself and your significant relationships can help all involved to better cope with difficult caregiving responsibilities.

The post When Caregiving and Marriage Collide: Overcoming Loneliness in Crowded Spaces appeared first on .