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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.

dementia memory loss

Dementia is More Than Memory Loss

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A few weeks back, Brian wrote here about his recent bout with aphasia. It was a living nightmare. And even though it lasted only a day, his ability to speak, to communicate, a part of his very being, was trapped indefinitely in a box. Could you imagine? You see, many people equate diseases like Brian’s Alzheimer’s and vascular dementia only with memory loss. But dementia is so much more than that.

Brian is my life partner and care partner. We walk this dementia journey together. Sure, memory loss is a big part of it. I’ve witnessed his memories regress steadily through our years together, and our life-care plan involves a lot of daily reminders and motivations to help Brian do everything from managing his blog to showering to eating. 

Those are just daily steps. Some days are good. Some are bad, but for more reasons than just memory loss. Different types of dementia and their various stages bring all sorts of conditions and emotional states. Mood swings. Hallucinations and other vision impairments. Communication difficulties. Disorientation with time and space. Inability to focus. Confusion. They all have a face and a name beyond forgetfulness.

Symptoms of Dementia Beyond Memory Loss

As dementia progresses to the mid- and late stages, changes in brain function and cognitive ability may become more pronounced and frequent. With Brian, one day may bring wild hallucinations while the next places him in a place he calls “the nothingness,” where a fog overcomes him and his sensory perceptions are almost nonexistent. 

Here’s an explanation of some common symptoms persons living with dementia and their care partners experience:

Emotional Changes

People with dementia may often become moody and agitated. They often don’t know why. Sometimes, pure frustration causes their distress and anxiety. They may be upset they can’t express themselves clearly, recognize familiar faces and things, or complete a simple task. 

Mood swings, a familiar calling card of Brian’s vascular dementia, may also have no understandable source. Irritability can be simply biological. Dementia in its essence is a systematic destruction of brain cells. When nerve cells misfire or disconnect in areas of the brain governing emotion, the emotional roller coaster begins a rapid journey of ups and downs beyond control.

Hallucinations and Other Sensory Misperceptions

Persons living with dementia may report seeing, hearing or feeling something that’s not there. They may see a face or a mysterious figure lurking in a dark shadow (insert feelings of paranoia here). They may even see or feel small critters crawling on or near them. Sometimes hallucinations could be random shapes or foggy areas clouding their vision. Your loved one may also report seeing people and pets from their past.

Couple these visual misperceptions with sensory overload — perhaps the sound of whooshing branches in the wind or a microwave running in the next room — and your loved one could feel particularly anxious or paranoid.

Again, hallucinations stem from damaged and misfiring neurons. But what they see and feel is very real to them. It’s important to acknowledge and validate their reports. Arguing that a hallucination doesn’t exist does nothing to quell fear and confusion. Sometimes calmly reorienting the conversation to focus on something else or a change of location (away from overwhelming stimuli) can bring your loved one back to reality.

Inability to Focus

For many individuals with dementia, focusing on a certain subject or task may be very difficult. Even in early stages, they may be unable to follow a recipe they know by heart, to focus on reading, or to finish a routine household chore. Did they mix in that ingredient? Did they already read that passage? Did they move over the laundry? Losing track of the steps can cause confusion and indecision that can hinder even the simplest of processes.

In mid- to late stages, losing focus can affect every aspect of life. Your loved one may no longer be able to drive because they can’t focus on the road, traffic markers and familiar routes. They may need assistance with personal hygiene and other elements of self-care. Does memory loss have something to do with this? Yes, but dementia’s common regressions in attentiveness are a distinct neurological symptom. 

Difficulty Communicating

I earlier mentioned Brian’s aphasia. A common dementia-related illness, aphasia attacks one’s linguistic abilities like talking, writing or comprehending their own language. Brian’s longest battle with aphasia lasted six months — thankfully he has mastered his talk-to-text app and likes to argue through Alexa and Siri, but I digress.

Communication difficulties associated with dementia may be more subtle. Your loved one may struggle with finding the right words or completing a sentence. Their thought train may be rolling without a hitch, but they then halt after “losing it.”  

Thankfully, humans can communicate in a variety of ways. Eyes can point out things we want or need. Facial expressions can signal emotion quite powerfully. Persons living with dementia may even hum a tune or grunt to convey meaning. We, as care partners, must be patient, attentive and follow the clues our loved ones give.

Disorientation and Poor Coordination

Even the healthiest among us can become easily disoriented or clumsy, at times. Now imagine functioning with regressing brain function. Individuals with dementia often struggle to pinpoint their location in relation to nearby objects, from one room to the next, or most notably, from somewhere else to home. 

Around the house, they may struggle with depth perception, increasing risks for both minor and major injuries from falls. As your loved one progresses through the stages of dementia, they may need assistance navigating an environment more tailored to their safety. Strong lighting and easy accessibility to things they need are helpful.

Regressions in Reasoning and Judgment

Dementia also attacks strong judgment and ability to reason toward logical conclusions. A person may no longer make good decisions about their own physical health and financial well-being. Often, their mind is active in a previous year — or decade — and may be operating under outdated thoughts and processes. Their judgment may be reckless or dangerous, even in early stages, while operating a vehicle or watching a youngster. 

As with any of these dementia symptoms, reasoning and judgment regressions require compassionate understanding and mindful monitoring. (Helpful hint: If you discuss building a good life-care plan with your elder early, you can prepare for care partners to help with important decision-making like banking and transportation.) 

#WeAreDementiaStrong. We Can Help Plan for Dementia Beyond Memory Loss

#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 provide referrals and guide the process in a caring and compassionate way.