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caregiver stress

5 Ways to Deal with Caregiver Stress

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

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

How to Cope with Caregiver Stress

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

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

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

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

1. Build a Life-Care Plan

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

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

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

2. Do Your Best

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

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

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

3. Accept (and Ask For) Help

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

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

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

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

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

4. Prioritize Your Health & Well-Being

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

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

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

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

5. Accept the Inevitable

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

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

Dealing with Caregiver Stress Takes Self Care and Preparation

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

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

If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning and team building, as well as Medicaid planning (with asset protection) and patient advocacy for individuals with terminal illnesses such as dementia. We are happy to provide referrals and guide the process in a caring and compassionate way.

Living with aphasia and dementia

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

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

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

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

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

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

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

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

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

The Uncertainty of Aphasia: When Will It End?

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

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

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

Bringing Out My Voice Again

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

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

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

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

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

“#&*@!” 

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

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

Communicating with Aphasia and Dementia

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

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

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

golden years

Enjoying the Golden Years with Our Loved Ones

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

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

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

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

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

Engage the Mind

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

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

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

Story Time

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

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

Build a Life Care Plan

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

Have early conversations involving:

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

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

Connect (and Reconnect) 

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

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

Good Diet & Exercise

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

Express Gratitude

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

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

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

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

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

death doulas end of life

Death Doulas: Compassionate End of Life Care

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

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

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

Death Doulas in Your Life Care Plan

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

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

Life Care Planning

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

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

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

Companionship

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

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

Emotional Counseling & Spiritual Care

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

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

Respite Care

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

Team Coordination

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

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

Honorary Services

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

  • Grief management
  • Religious preferences
  • Natural burials

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

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

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

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

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

benefits of hospice

What are the Benefits of Hospice Care?

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

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

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

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

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

Comfort

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

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

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

Home Care

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

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

Financial Relief

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

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

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

Spiritual Life

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

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

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

Care Partner Support & Counseling

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

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

Hospice: Bringing Comfort and Dignity to End of Life Care

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

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

early onset dementia

Early Onset Dementia: Mom Keeps Forgetting My Name

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

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

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

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

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

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

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

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

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

Begin With a Comprehensive Medical Evaluation for Younger Dementia

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

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

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

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

Build a Person-Focused Life Care Plan

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

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

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

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

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

Build Your Care Partner Team

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

Their voice matters!

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

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

Or maybe someone does it all!

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

We Are #DementiaStrong

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

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

aging reasoning and judgment

How Do Reasoning and Judgment Change During Aging?

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

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

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

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

But What Exactly are Reasoning and Judgment?

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

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

And Then We Get a Bit Older

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

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

Attention

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

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

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

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

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

Memory

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

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

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

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

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

Perception

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

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

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

Living Life to the Fullest Despite Changes in Reasoning and Judgment

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

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

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