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care-partner team

Who Should Be On Our Care-Partner Team?

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This may just be one of my favorite parts of the life-care planning process: building the care-partner team. You naturally have tons of questions as you and/or a loved one make important preparations. Yes, they’re all equally important! But selecting the care partners that’ll be there for support in good times and bad is the foundation on which a life worth living is built.

What’s a care-partner team? Admittedly, the common vernacular out there today usually favors the term “caregiver(s).” However, most professional circles involved in care for aging and life’s late stages now prefer person-centered care and language. “Care partner” empowers and uplifts both the individual(s) at the center of care and their beloved helpers.

So let’s build that vital network of support. It’s a team effort. Success, health and happiness requires everyone doing their part. 

Building a Care-Partner Team: Who Should We Include?

The great thing is there’s no wrong answer. No one says your spouse has to be a primary care partner – if that’s your choice. No one says your care-partner team must include children or any other close family – if that’s your choice. It certainly can include them – if that’s your choice. And there are a host of other professionals and agencies that may help the team – if that’s your choice.

I am a primary care partner to my life partner, Brian LeBlanc, who lives with Alzheimer’s disease and vascular dementia. That means I’m present in his life daily to offer assistance any way I can. Admittedly, it works out well because I’m a professional life-care planner and Board-certified patient advocate. (But here’s a little secret: you don’t need to be a professional to be an expert care partner guided by love.)

So let’s build your team today.

Circles of Support

Think of a care-partner team as a series of concentric circles. Your loved one sits at the center. They receive care, of course, but under the person-focused care philosophy they’re actually tackling the most important job of directing it. Everyone else surrounding them plays vital and specific roles – non-professional and otherwise – either directly providing love and support or offering guidance. And as an added bonus, everyone on the team both gives and receives care. 

The First Circle

Surrounding your loved one(s) may include family, friends, neighbors and other good people who hold a special place in their heart. Makes sense, right? They’re typically quite close. They may visit frequently or even live in the same residence. So on a day-to-day basis, care-partner tasks may look like business as usual. A spouse may organize medications, plan meals and shop for groceries. A sister may clean and do other household chores. A nephew may walk the dog, balance the checkbook or simply visit for coffee.

Who these people are and the depth of their responsibilities is up to you. It’s helpful to identify a family lead person (FLP), someone with close proximity, availability and a strong familiarity with their daily needs, wants and routines. 

A beloved spouse may desire to see their love and devotion through “’Til death do us part.” But poor health and death comes earlier for some than others. An adult child or sibling may assume a lead role, but there’s no hard-and-fast rule saying the FLP has to actually be family. A neighbor or longtime friend – or even someone they happened to “click with” in the park a few months back – could head the care-partner team.

What else to look for in the first-circle team members? Dependability and accountability. The care-partner team is also there to support the primary care partner. Sure, you’ll seek those with the warmest, most personal relationships. But that alone doesn’t make a great care partner. Even the kindest people may not be ready or available to assist the care required. 

Deeply connected family members can also lack the mental toughness, unbiased lens, personal health, self-awareness and/or financial freedom to serve lead roles. That doesn’t mean they’re useless to the team and individual. They may simply have to take another supporting role in the best interest of your loved one(s).  

Think positive energy and responsibility.

The Second Circle

A well-made life-care plan should next factor community professionals, agencies and support systems. Effective care takes a village, whether an individual lives with a terminal illness or is aging in good health.

The first options are obvious. Most folks have a primary care physician. Getting up in age, most continue to collect more doctors, clinicians and other specialists who help with distinct conditions. You know the types: heart doctors, neurologists, oncologists and endocrinologists to name a few. Their titles and expertise are ever complex. (Say otolaryngologist 10 times fast! I’d rather just say “ear, nose and throat doctor.”) 

But there’s more to aging – and certainly more to terminal illness – than just the specialists that help medical care. You should also be considering end-of-life care options, like hospice and/or palliative care, because the dying process truly demands comfort and resources. And then there are financial and legal preparations, because we must be ready to guide the distribution of assets and the execution of final wishes. 

But wait! There’s more! 

Your loved one may require living transition and placement services to accommodate home health care or move to assisted-living, skilled nursing, rehabilitation, memory care or other senior-living services. Planned or not, these are often vital to maintaining a life worth living and quality of care as health conditions worsen.

They may need real estate assistance to sell and buy property meeting specific needs. Their needs may include more personal care preferences for:

  • Religious services/spiritual counseling
  • Respite care/adult daycare
  • Medicaid/VA planning
  • Home care
  • Comfort care
  • Domestic services (housekeeping, meal delivery and cooking, etc.)
  • A death doula 

An experienced Board-certified patient advocate and life-care planner can coordinate and refer all personal and professional services requested on the care-partner team.

A Board-Certified Patient Advocate Coordinates the Whole Care-Partner Team

Care partners come in all forms. They’re family. They’re friends. They’re professionals. They each serve an important role in a life worth living. Some services may not be required for years, but you should organize resources early for when it’s time to mobilize.

I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my life partner/care partner, Brian. If you need help, Caregiver Support and Resources, LLC can help you from beginning to end.

life-care plan

A Life-Care Plan Must Be Flexible

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Last week we discussed fire-drilling your life-care plan. For myself and my care partner, Brian, a nightmarish “perfect storm” had thrown our professionally designed plan (built by me) into disarray. It called a number of factors into question and shed light on one key reality: a life-care plan must be flexible.

Not that ours wasn’t. But it clearly wasn’t flexible enough. It didn’t factor enough of the what-ifs, whoopsies and oh-shoots. Thankfully, we ended up OK. 

And in the end, I was actually happy that our pain served as a teachable moment and example for the many good folks out there (like you and your loved ones) who need a strong and comprehensive life-care plan in later years.

A Life-Care Plan is a Living, Breathing Document

So, first of all, yes, it’s a formal document that breaks down what will be done, when, why and by whom. It factors everything that needs to happen as one navigates toward life’s logical conclusion – in sickness, good health, terminal illness and everything in between. Elements often include:

Sounds rigid and strict, right? Not at all. It may include considerations that are non-negotiable – a certain type of memorial service, including (or not including) hospice, medical and dietary needs, and even musical preferences. But they’re not set in stone.

Needs Change as Time Marches On

Things change with time. Does that mean we stop planning? Does that mean it’s pointless to plan knowing the world will throw wrenches and curveballs? No! If anything, it means we try harder to prepare and factor all the possible scenarios.   

We look to the future with lessons from the past while adjusting to needs today.

Supporting Roles

OK, so in our “perfect storm” a few weeks back, the issue was that I was very sick and needed hospitalization. Our planned care partners who would step in for Brian, who lives with Alzheimer’s and vascular dementia, were unavailable (take note: a VERY COMMON occurrence during the holidays).

But what if I were gone forever? What if you, a brother, a spouse, a dear friend tasked with primary care-partnering duties were gone? Brian and I discuss this frequently. We’re getting older (but not that old, so be careful!). And for all the attention Brian allows for his medical, emotional and psychological realities for dementia awareness and advocacy, my own lesser-publicized medical needs do exist. I’m a human being, no less mortal than any other. 

There’s even a very real possibility Brian may outlive me. Our life-care plan factors that. Brian has even compiled a video to his future care partners to know him as a person, as well as his needs and wants, if I’m not there.

Yes, our life-care plan still names me as a primary care partner – and spells out the roles I must serve for him, he for me, and us for each other. But it also names the appropriate people and professional services that would step in if I die or am incapacitated myself.

Medical Needs

Let’s say your parents are compiling a life-care plan in their early 50s. Good for them!

They’re in good health, still working, and retirement remains distant. But (I’ve seen this a lot before) the plan they’re building anticipates great health all the way to the grave.

  • “Should you have plans for hospice?” “Nope, I’m sure we’ll age and die gracefully and painlessly.”
  • “Are there certain medications you’re against taking?” “I don’t think we’ll have to worry about that.”
  • “Who will make care decisions if you can’t speak for yourself?” “Ehh, my wife will always be there to set ‘em straight.”

Wishful thinking, at best. Naiveté, at worst. Then comes a diagnosis of Alzheimer’s, cancer, organ failure or something else debilitating and/or terminal. Without planning, you and yours may end up suffering from medical indecision and confusion, financial and legal issues, and poor care outcomes. 

At 53 you may still be athletic and spry, playing golf, tennis or even basketball regularly. At 76 your knees likely won’t handle it. By 83 the pain could be worse than you ever imagined. And that’s in good health. 

Imagine it worse. Imagine it possible. And then build the support and resources required to meet those needs – medical, financial and more – into your life-care plan. (Helpful hint: Certainly prepare for and expect the absolute best. Just be prepared for when life is unfair. Your loved one may want those meds after all.)

Helpful Resources

Who would’ve ever expected we’d be living in a Covid hell? Who would’ve anticipated a third year of it? It’s caused so much anger and confusion over close family members – many of whom are primary care partners – visiting and helping their aging relatives. I spent a ton of time teaching families to use Zoom or Facetime just to see their loved ones. 

For anyone who made a life-care plan before 2020, Covid was not part of it. Now we know and we’re better for it – anticipating Covid may continue indefinitely or the legit possibility of another pandemic in our global society.

Now we have a nationwide movement to ensure one close family member or friend would be considered an “essential worker” to have direct access to an individual under quarantine mandates – “because isolation kills, too.” Here it’s called Florida Caregivers for Compromise.

We also highly recommend community support groups. That’s your best front line for learning available resources and how others in similar circumstances have met their needs. You’ll meet those experiencing similar realities as you. (But a word of caution: a care partner to a spouse feels emotions and realities far different from one to a parent, sibling or other close family. Each emotional experience is distinct.) 

Additionally, here in Pinellas and Pasco counties, we have severe acts of nature that could up-end any solid life-care plan. There are so many elders with limited mobility or mental capacities living in high-rise apartments. Their own homes could become death traps during a prolonged power outage due to a hurricane or tropical storm, when elevator use or care-partner access would be impossible. You may register with Emergency Services to ensure yours or your loved one’s unit is checked and cleared during a weather evacuation, fire or other emergency.

Expect the Unexpected in Your Life-Care Plan

I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey. These plans may be specific, but they also require flexibility.

Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.

Contact me at info@caregiversupportandresources.com to get started today.

life-care plan

Fire Drill! Is Your Life-Care Plan Ready for the Unexpected?

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I’m a professional life-care planner. I’ve been helping people and their loved ones plan for advancing age and terminal illnesses for decades. It’s critical to be prepared. Just a few short weeks ago, our own plan fell apart.

It certainly wasn’t for a lack of trying or expertise. By all accounts, the life-care plan Brian (my life partner/care partner) and I have built together was rock solid. It factors all eventualities from finances to his dementia-related needs to both of our final wishes.

But I was deathly ill with pneumonia. Brian needed help that could not be found. I’d hate to consider the worst-case scenario. What horrors could befall us with me dead or incapacitated in the hospital and the love of my life on his own for God knows how long?

It happened to us — professionals who make a living by building life-care plans and related disciplines. It could happen to you. So this got me thinking. You must fire drill your plan.

Your Life-Care Plan Shouldn’t Be Left to Chance. Test It Out!

Yours or your loved one’s plan could be simple or dramatically complex. You or your loved one may be in good health, with only very basic measures to ensure financial affairs are in order and end-of-life care is prepared. Or you may anticipate poor health and many logistical layers needed to deliver appropriate care (for everyone involved).

In either case, and anything in between, let’s test out the life-care plan.

Care-Partner Support & Responsibilities

This part sticks out, first and foremost, because it was what caused the most uncertainty and fear. I was ill. Brian lives with Alzheimer’s disease and vascular dementia. A brief hospital stay likely wouldn’t be an issue. He’s cognizant enough to care for himself and set reminders to complete daily tasks on foggy days. But a lengthy stay … he would need some assistance.

Which is where other members of the care-partner team come in to save the day, right? Yes, in theory. But in our case, through no fault of their own, family and friends were out of town or unavailable. This is especially common during the holidays, when both primary and secondary care partners may be understandably busy with other trips and engagements. 

These responsibilities don’t involve only those who will be called upon to “sit” for a loved one or dependent. Care-partner support may cover any need (again, for everyone involved). For example:

  • A neighbor may agree to provide transportation to doctor appointments, in a pinch.
  • An adult child may help with bathing, cooking and cleaning.
  • A spouse may organize daily prescriptions and other medical recommendations.
  • A sibling may help with yard work and other household chores during prolonged facility stays.
  • A cousin with financial expertise may be entrusted to pay bills when you or a loved one are unavailable/incapacitated.
  • A grandchild may stop by for visits (wellness checks) when you’re away from home.

No role is too big or too small. Each person on the care-partner team has something important to do. But let’s test for hiccups and other surprises.

How to Test the Plan

As I said before, it was no one’s fault that they weren’t available in our recent crisis. We had family members, other loved ones and friends in other states. Some wouldn’t be able to help due to Covid. How were they to know amidst their busy lives and other primary responsibilities? It was “the perfect storm.”

So how do you test your plan? Game a scenario. Don’t tell them it’s a fire drill until afterward. 

Without causing alarm, call a primary care partner with a task. “I’m heading out of town for an emergency meeting. Could you please come help out with Mom?”

Call another supporting care partner. “Hey, are you available to help Dad with the yardwork this weekend? We’ll be away getting some tests.” Or perhaps, “Could you please help with bathing and getting Greg to bed tonight? Work called, and I won’t be able to.” 

Are the people you’re counting on available when needed? How quickly could they get there? Would there be a wait until they arrive? If so, is it manageable? Were their reasons valid? Did they answer at all?

You could even gather the entire care-partner team for a military-style drill in which everyone acts out an emergency scenario. Pretend your loved one had a significant emergency and the team must take action:

Running through the plan — even if it’s just verbally — reaffirms responsibilities for each person involved. Like anything in life, practice makes perfect.

How to Adjust the Plan

It should be immediately clear who’s willing and available in a pinch. It should be known who’s ready and capable to accept certain responsibilities. But, most importantly, fire drilling the life-care plan may identify uncertainties that can be easily fixed with alternatives. Essentially, “If Aunt Betty isn’t available, who’s the next best option?” And, “If the next best option isn’t available, then who next?” 

Sometimes the best choice may not even be family, friends or neighbors. You may have to include community agencies in the contingency plans. Resources like home care, adult daycare, respite care and assisted living can provide guidance, structure and lodging, when needed. Of course, not everyone could afford hourly rates for certain services or would be eligible for Medicaid to cover them.

You may even run across a situation in which your loved one refuses care or assistance in an emergency. If it’s a matter of life and death — as our situation was — sometimes the best a care partner can do is call adult protective services. 

Testing Your Life-Care Plan Gives Peace of Mind

Although I was very sick, I’m GLAD the plan fell through. It was very eye-opening and allowed me to factor uncertain scenarios for the future.

As a professional life-care planner and a Board-certified Patient Advocate, I assist individuals and their care-partner teams every day. And then I come home to fulfill our life-care plan with my Brian. If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.

Patient Advocacy

Patient Advocacy: Your One-Stop Shop for a Life Worth Living

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As your loved one ages or progresses through a terminal illness, the number of professionals and agencies involved in their care will only increase. Patient advocacy is your one-stop shop for EVERYTHING your loved one and their care partners will need.

You’ll have doctor appointments — sometimes many of them spanning a range of health disciplines. You’ll have coordination along the continuum of care — from the home and in the community to potential long-term care options. You’ll have financial and legal considerations. And, all the while, you’ll require continuing education into health conditions, care options and quality-of-life factors.

After all, each of us deserves a life worth living, right? Here’s how a Board-certified Patient Advocate can help.

Board-Certified Patient Advocacy in the Tampa Bay Area

A Patient Advocate helps to navigate complex health care systems, financial realities and resources for senior care, people at end of life, and those who simply wish to prepare for life’s latter stages.

Care-Partner Team Building

We steer clear of the term caregiver. While accurate in some cases, person-centered language prefers the term care partner. Why? Because it empowers the individual at the center of care. They’re not just care recipients. They’re people — with special needs and desires for a life well lived and thoroughly enjoyed. In many cases, they may direct their own care for many years into advancing age or a terminal diagnosis. And with a great life-care plan, they may make preparations and continue to direct their own care when they’re no longer able to make decisions.

Where do we start? Let’s consider ALL of the individuals who may serve a role in assisting care. It’s a team effort, when possible, and this team may include loved ones, friends, neighbors and professionals with important roles in the home (family visits, cooking, cleaning, etc.) to transportation (to and from medical appointments) to respite care, assisted living or long-term nursing care (transitions and ongoing support).

A life-care plan is a working document that can always change as needs evolve. It provides accurate and timely information that addresses all aspects of care from physical therapy, doctor visits and crisis intervention to financial responsibilities, dietary needs and community living.    

Medical Care Coordination

Patient advocacy helps clients understand all treatment options, whether they’re terminal illnesses like dementia and cancer or simpler needs that follow the healthy aging process. Treatment options are just that: options. Sometimes seeking second (and even third) opinions yields the best possible care. We empower care-partner teams to ask tough questions of the right professionals involved in all aspects of care.

Some individuals see a network of doctors, clinicians, specialists and other providers to address specific needs. Complexity and confusion are common. We work alongside clients to secure care options in any setting. We will even coordinate and attend medical appointments, if appropriate. We also help care-partner teams to organize important health care, financial and legal documents (like a living will or power of attorney), as well as prescriptions and recommendations by health professionals.

Medicaid & VA Planning

A semi-private nursing home room costs on average $9,946 per month here in the Tampa, FL area. Folks can save their entire lives and think that they’ll have adequate funds for “that rainy day” only to suffer a stroke, major heart attack, or receive a terminal diagnosis. Almost overnight, they no longer have the means to afford critical health care needs. This expense would cause most people to enter financial hardship.

In order to receive Medicaid and VA benefits, individuals must first be financially eligible. A Board-certified Patient Advocate, like myself, helps clients to understand financial eligibility ins and outs to protect assets for now and the future. Medicaid, unlike Medicare, will cover all long-term care costs. Once we obtain Medicaid eligibility for an individual, if they remain within the Medicaid guidelines, they will be eligible for the rest of their lives.

Life Transitions

Almost everyone prefers to age comfortably at home. Sometimes that’s possible. But conditions and diagnoses come that, at times, compel transitions to a more optimal, healthy and safe living space. Moving to an assisted-living facility, nursing home or hospice end-of-life care is difficult for everyone involved.

An experienced Patient Advocate assists care-partner teams with the logistics and red tape associated with moving. In addition to financial eligibility requirements, elders and their care partners must navigate issues associated with real estate transactions, asset management and continuity of care. 

Some moves are temporary. When a client is discharged to a rehab facility (or back home), we plan and coordinate resources for whatever that next step may be.

Education and Referrals

Whether you or a loved one are researching care and financial options for years in the future or immediately after an Alzheimer’s diagnosis, your Patient Advocate will always educate you about processes, responsibilities and treatment options. 

There’s so much to know. Yes, it will likely seem overwhelming. What can you do when a loved one no longer responds to treatment? How do you adjust when they wish to adjust their end-of-life plans or when circumstances change for Medicaid eligibility? When those questions (and others) arise, we will refer helpful resources from a network of partnering organizations.

Let’s Start Planning for Patient Advocacy Today

I am a Board-certified Patient Advocate in the State of Florida. I work with care-partner teams to advise and coordinate resources needed for every step of the care journey.

Aging individuals and their care partners face important decisions. There are many moving parts to planning care for quality of life and financial protection. You need an expert Patient Advocate who knows each required step for your loved one’s all-around well-being.

Contact me at info@caregiversupportandresources.com to get started today.

hospice care

Hospice Care: When is the Time Right?

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It’s close to the end. You know it. Your family knows it. The doctor and medical staff know it. (“Close to the end” is a strange combination of perspective and reality. And “knowing it” is an exercise in faith and reality.) When is the time right for hospice care?

Most hospice agencies say families and care-partner teams often  wait too long to make late-life and end-of-life decisions. Some even wait until the final weeks, or even days, to make the call for hospice care. In these cases, preventable pain and suffering have long since set in. 

So when is the right time for hospice care? If you’re building a life-care plan — even if you and your loved one still expect many more healthy years — the answer is NOW. 

Preparing for Hospice Care is Key to a Well-Made Life Care Plan

We know. The decision-making process is far from easy. But hospice care needs to be seen as a resource, not a devastating conclusion. Hospice care provides comfort care and coordinates other important support services for both the individual and their loved ones at end of life. 

To be eligible, a doctor must affirm the individual’s condition will likely result in death within six months. The physical realities will be quite obvious. It’s time to mobilize hospice and all of its comfort, support and resources when an individual is experiencing one or more of the following:

  • Increasing falls
  • Severely declining cognition and memory (dressing, eating, walking, toileting, etc.)
  • Increasing visits to urgent care, ER and hospital stays
  • Deteriorating physical condition (skin tears, open sores, infections, etc.)
  • Significant weight loss

A good plan factors these end-of-life realities and doesn’t delay action when they arise.

Increasing Falls

Numerous objects around a household could cause a trip and fall: electrical cords, dimly lit spaces, bunched-up rugs, grandchildren’s toys, damp floors, the list goes on. But what happens when misplaced objects and untidy rooms are no longer the greatest threat to navigating a home? 

Weakness in muscle and bones as well as poor vision and balance associated with advancing age and illness are dangerous obstacles in themselves. Your loved one may get around the home for many years with limited assistance. But when they’re too weak and disoriented to move safely from the bed to a chair, it may be time to consider hospice care or another type of additional support.

Declining Cognition, Memory & Function

Again, this may occur on a sliding scale. Declining cognition and memory, often occurring with Alzheimer’s and other types of dementia, may seem relatively harmless at first. But there will come a time when your loved one won’t remember the reason for a trip to the kitchen or how to safely operate hazardous appliances and utensils once there. There will be a time when simply functioning — eating, toileting, bathing, etc. without help — is impossible. 

When that day comes, hospice agencies can coordinate support to help families avoid and respond to emergencies and accidents.

Increasing Visits to the ER and Hospital

Trips to the emergency room and hospital stays for stabilizing or life-saving care may happen once or even several times. Chronic cardiopulmonary conditions, for instance, may bring an individual to the brink of death only to be revived with breathing treatments and sent home within hours. It’s when these trips become too frequent that families must consider bringing care directly to the individual. 

Numerous hospital visits for emergency care are taxing on your loved one, who must not only endure poor health but also ambulance transport and the hectic rigors of lifesaving treatment — wondering which episode may be their last. They’re heart-wrenching to families who also suffer and anticipate grief alongside their loved one. Furthermore, they burden emergency transport and care systems who must respond to the same address time and again.

Hospice agencies will provide expert medical staff, medications, supplies and other resources for use at home. A hospice nurse, family and other loved ones may administer emergency care in comfort, without unnecessary transport or intervention.

Deteriorating Physical Condition

In most cases, end of life comes with pain, illness and general discomfort. Body systems gradually shut down — including the immune system and natural healing processes. Minor cuts and scrapes worsen to skin tears and open sores, often deep, painful and infected. These may be bed sores caused by the pressure of lying or sitting in one position.

When pain and suffering of this scale occurs because one is no longer capable of moving on their own, it’s likely time to involve hospice care. Hospice professionals will treat active wounds and ensure your loved one is moved frequently to avoid additional pressure sores.

Significant Weight Loss

Your loved one likely will lose appetite in the end, followed by what appears to be rapid and unhealthy weight loss. While poor appetite and weight loss could accompany a terminal illness like cancer or organ failure, it also could simply signal the natural shutdown of life processes.

Yes, it may be painful for you, as a loving and devoted care partner, to witness your loved one shutting down. But if your loved one no longer requires food to sustain bodily functions, well, they no longer need it. Hospice agencies administering end-of-life care recognize the importance of letting nature take its course — and will help you to make peace with that decision.

Plan for Hospice Care … Before Crisis Hits

OK, so pretty much everyone aims for their loved one to be home and independent as long as possible. That’s understandable. NO ONE wants to surrender control over their living situation to “the system.”

But hospice care isn’t a “system.” It’s a resource — covered by Medicare, Medicaid and major insurance plans — that can be planned many years in advance and delivered in home. It can be a valuable part of your community of support. The planning process considers many quality-of-life benefits including:

Even if your loved one is not currently eligible for hospice, alternative palliative care options can deliver many of the same comfort services, treatments, medications and resources, with no out-of-pocket cost, outside of the six-month window.

The care-partner team must face end-of-life care with a clear head and without bias. Planning ahead can save headache, heartache and uncertainty. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

Alzheimer's and dementia

Common Alzheimer’s and Dementia Behaviors: Communication Difficulties

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You’re chatting with your husband and sister on the back patio on a beautiful summer evening. The wine tastes divine — even better with some stimulating conversation. Except, for some reason that escapes you right now, your husband is repeating himself and having difficulty finding the right words.

That’s new, you think to yourself as your sister catches your gaze, as she always does, to note you’re both on the same page. He’s commented on the wonderful weather a few times now. He’s recounted the same story about an office meeting at least twice. And he keeps stumbling over his boss’s name, often resorting to other ways to describe her.

It’s easy to shrug off these little lapses as a sign he’s just getting older. After all, common aging symptoms don’t always signify something more serious. But he’s typically pretty well-spoken, and these communication difficulties have arisen abruptly. He may be experiencing one of the most common early calling cards of Alzheimer’s and dementia.

How Does Communication Get More Difficult with Alzheimer’s and Dementia?

Problems with communication — like most other Alzheimer’s and dementia symptoms and behaviors — grow progressively worse. Being forgetful and tongue-tied with names and words may occur for years before individuals and families seek medical answers. By the end, dementia patients are often completely non-verbal.

Here’s what to expect by the distinct stages of Alzheimer’s and other types of dementia.

Early Stages

Well, you read it in our fictional example above. Your loved one will be alert and entirely capable of having meaningful and productive conversations. In fact, they may go long periods with no communication issues whatsoever, carrying on work responsibilities and daily relationships with a strong vocabulary, comprehension and rationality. 

But something seems off — even if it’s only sporadic. They may easily lose their train of thought. Discussions may head one way and then veer off course to a different topic. They may seem distracted. They may “lose it,” cutting themselves off mid-sentence when the subject or upcoming words become foggy.

Some may grow impatient or aggravated. (Who wouldn’t be when more frequently and inexplicably stumbling through their own language?) They sometimes become quiet. And others with multilingual capabilities have been known to revert to their first language.

Middle Stages

You may spend many years in these stages with your loved one. Expect much of the same — losing places in thought, misplacing words and names, etc. — but more magnified and growing steadily worse. You won’t be overlooking or rationalizing symptoms here. It’s definitely Alzheimer’s and/or another type of dementia. Your loved one may have already received a diagnosis. Like it or not, they’re well along this path and communication will only become more confounding.

As their condition progresses, they may instinctively resort to gesturing or describing things to make a point. They might glance to the sky and, not remembering the word “cloud,” use their hands to gesticulate something billowing above their heads. Or, perhaps even misplacing your own name, they might refer to you with a term of endearment like “my lovey,” “big guy” or “handsome/beautiful.”

While memory indeed plays a key role in communication, it’s important to remember Alzheimer’s and dementia also erode many other cognitive abilities. (As we always say, dementia is more than memory loss.) By the mid-stages of many diagnoses, your loved one could be dealing with: 

You may notice their discussions beginning to lose a foothold in reality, rationality and logic. They may tell fantastical stories about things they’ve supposedly seen and done — little white lies to fill silence or when they lose the conversation. Some persons living with Alzheimer’s and dementia can even become manipulative, especially when it comes to things they want/don’t want to do. (ex. “But you told me I could drive to the beach!”)

Late Stages

Nearing the end, the person your loved one once was may have all but vanished. But rest assured, there’s a beautiful soul in there with plenty to say (if you know how to pay attention). 

They will likely become non-verbal. But they’re not doomed to sit in silence. With some engagement, they can still enjoy family and life’s other gifts — and, just as importantly, effectively communicate their needs and wishes. 

In the absence of talking, they may exclusively use gesturing to signify things they want. Pointing toward their mouth or a pitcher of water could indicate they’re hungry or thirsty. Similarly, smacking their lips together may mean their mouth is parched. Using facial expressions, eye contact, grunts or hums they might express:

  • Happiness at seeing a dear family member or friend
  • Pain and discomfort with hot, cold, seating and bedding
  • Desire to enjoy an activity (like taking a walk or watching a movie)
  • Distress from overwhelming situations

Music and art therapy have even been known to temporarily restore verbal communication, memory and cognition to Alzheimer’s and dementia patients. In a previous blog, we introduced a man named Henry who hadn’t spoken in years, but when given headphones playing his favorite music, he sprung to life and recalled vivid memories of favorite tunes and dances from his younger days!

Let’s Prepare for Effective Communication with Alzheimer’s and Dementia

You know communication will become more difficult, especially when your loved one reaches the mid- to late stages. Here are some effective communication strategies for when times get tough. You must plan ahead, that’s exactly what we help individuals and families to do.

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

community care

It Takes a Village: Community Care for Dementia Patients

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You’re trying so hard. We know. Being a great care partner for a loved one living with dementia is most certainly a labor of love. You may feel very alone. You likely feel as if you carry the weight of the world on your shoulders, keeping up with the steady march of dementia and its common calling cards, watching the person you’ve loved so much slowly fade away.   

But we’ll let you in on a little secret: you don’t have to do it alone. Loving care and support for ANYONE takes a village — a community of individuals and organizations that can provide relief, guidance and direct services. Here are some great community care options for dementia patients.

Community Care for Dementia Patients: Building Your Village of Support

OK, so I admit “community care” sounds formal. Families and individuals who’ve just received a diagnosis of Alzheimer’s and/or dementia may envision an institutionalized world of walls, structures and systems meant to CONTAIN and RESTRICT rather than NURTURE. 

But that’s not the case at all. Community care begins at home and can extend to a vast network of services and care professionals devoted to honoring the individual and their specific needs. 

Let’s build a life-care plan and care-partner team for a life worth living.

Dementia Care Begins at Home

Your loved one living with dementia likely wants to stay independent at home as long as possible. Involved family members often want that, too. Who could blame them? Home is where the heart is, after all.

You may be the spouse, sibling, other close relative, or a very close friend. (Helpful hint: think of the team as a series of concentric circles or spheres of influence moving outward, with your loved one at the center.) So who’s closest? Does someone live close by to visit daily, or at least frequently? 

A great life-care plan should first factor proximity to provide daily love and support by close loved ones who can:

  • Offer assistance with cooking, cleaning, groceries and other housework
  • Document current and evolving care needs
  • Coordinate medical visits and provide transportation, when necessary
  • Organize bills and other financial needs
  • Or simply stop by for a cup of coffee

Again, your loved one likely wishes to handle responsibilities independently as long as they’re capable. But dementia marches on. It’s a thief that’ll relentlessly erode that autonomy. Best to prepare roles, responsibilities and routines now for what comes later.

Helpful Community Care Agencies for Dementia

Strong as the urge may be to do everything, you and the entire care-partner team will need support as your loved one’s dementia progresses. So let’s build your village to include some helpful community care agencies. 

Your life responsibilities don’t go away as your care-partner responsibilities increase. You likely still need to work (unless you’re happily retired), care for younger relatives, and tackle your own home and financial duties. And, quite frankly, caregiver burnout (aka compassion fatigue)  causes even the most capable and energetic among us to need a serious break. 

So who looks out for your loved one while you step away briefly? Good news! Most communities today have well-established, reputable agencies for providing dementia care and family services.  

These may include:

Assisted Living, Nursing & End-of-Life Care

Eventually, the time may come when living at home is no longer feasible — or safe. Your loved one and the care-partner team will require 24/7 support. In later stages of dementia, the individual will lose the human capacities and instincts we all take for granted: speaking, eating, bathing, etc. And approaching the end, your loved one will likely require professional support to ease the end-of-life transition.  

Your life-care plan may already involve a chosen assisted-living, nursing or memory-care facility. End-of-life professionals including hospice, palliative care and even death doulas provide compassionate care to ease pain and suffering for everyone involved. Many such agencies will also provide or refer spiritual care and counseling for your loved one and close family/friends to make sense and peace of the dying process.

We recommend having these conversations early in the planning process, so everyone on the care-partner team can assess end-of-life care with a clear head and without bias. The last thing you want is for confusion and ambiguity to muddle your loved one’s final wishes when it’s too late and they can no longer express them clearly.

Building a Community Care Plan for a Life Worth Living with Dementia 

As a professional life-care planner and a Florida Board-certified Patient Advocate, I assist persons living with dementia and their care-partner teams often. And then I come home to my life partner/care partner, Brian, who lives with Alzheimer’s and vascular dementia. I live these realities daily, and I want to help you!

If you need help, Caregiver Support and Resources, LLC can help you to build a plan and refer you to great community care resources.