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CAREGIVER WELLNESS · YOU DESERVE CARE TOO

Tools, support, and steady ground for the people doing the caring

Caregiving is one of the most meaningful things a person can do — and one of the most depleting. This page is for recognizing where you are, respecting your limits, and finding real support.

Looking for the "Permissions and Practices" tools?

The eight short, evidence-based tools for depleted caregivers now live on the Caregiver home page, where they're easier to reach.

Open Permissions and Practices →
Recognizing Burnout

What caregiver burnout looks like

Burnout doesn't arrive all at once. It builds — and it often looks like many other things before it becomes obvious.

Physical signs

  • Constant tiredness that sleep doesn't fix
  • Getting sick more often than usual
  • Neglecting your own medical or dental care
  • Changes in sleep — too much, not enough, or broken
  • Unexplained physical aches or tension
  • Changes in appetite or weight

Emotional signs

  • Feeling numb or disconnected from your own life
  • Losing patience quickly or feeling irritable
  • Withdrawing from friends, family, or things you used to enjoy
  • Feeling like nothing you do is ever enough
  • Dread or anxiety about facing another day
  • Feeling trapped with no way out

If you're experiencing several of these: You are not weak, and this is not a personal failure. Burnout is a predictable outcome of sustained caregiving without enough support. Please reach out — to a doctor, a counselor, a trusted friend, or one of the resources on this page.

Take the 22-question burden self-check →

Gentle Honesty

Common challenges many caregivers face

Many caregivers quietly absorb everything — the appointments, the worry, the physical work, the emotional weight — without ever asking for help. Isolation makes everything harder. Even one honest conversation — with a friend, a doctor, a counselor — can ease the weight.

There's a tendency to wait until things reach a breaking point before reaching out. Support is most effective when it comes before crisis. Starting early — even when things still seem okay — gives you options.

Medical bills, insurance correspondence, benefit letters, medication lists — these can pile up quickly. Consider designating one person in the family to handle paperwork. Financial or legal issues that go unaddressed can become serious problems later.

Caregivers are significantly more likely than non-caregivers to delay or skip their own medical care. Your loved one needs you to be well. Please don't skip your own screenings, medications, or doctor visits.

Family disagreements about care decisions are extremely common — and often painful. Some families find it helpful to have a care meeting, either informal or facilitated by a social worker or counselor. Naming roles clearly and sharing information openly tends to reduce tension over time.

Taking a Break

Respite — time to rest

Respite means a temporary break from caregiving so you can rest, recover, and return with more capacity. It is not optional — it's how caregiving stays sustainable.

National Family Caregiver Support Program

Offers basic support for family caregivers, including information, guidance, and in some cases limited respite or assistance depending on local availability and funding. Services vary by area and may be modest.

Call Eldercare Locator: 1-800-677-1116

They can connect you to what may be available in your area.

Informal respite

A trusted friend, family member, or neighbor who stays with your loved one for a few hours can provide real relief. Don't overlook this.

Consider rotating responsibilities with other family members — even occasional help reduces the cumulative burden.

Balancing Work and Care

For those balancing work and caregiving

Many caregivers are also working full or part time. This balance is genuinely hard, and it rarely gets acknowledged enough.

Understanding FMLA

The Family and Medical Leave Act (FMLA) allows eligible employees to take up to 12 weeks of unpaid, job-protected leave per year to care for a family member with a serious health condition.

  • Applies to companies with 50 or more employees
  • You must have worked there for at least 12 months
  • Leave can be taken all at once or intermittently
  • Your health insurance must continue during leave
  • Speak with HR to understand your specific situation

Talking to your employer

You don't have to share every detail of your caregiving situation, but being somewhat transparent with a trusted supervisor or HR can open up options — including flexible scheduling, remote work, or leave. Many employers are more accommodating than employees expect, especially if the conversation happens before things reach a crisis point.

Support for caregivers — in Grand County & beyond Grand Center, Moab Solutions, Utah ADRC, Eldercare Locator, and your neighbors. Tap to expand.

Grand Center

Senior Hub · Grand County

Local senior center. Meals, programs, information, and warm human help with navigating next steps. Often the best first call for local aging-related questions.

📞 (435) 259-6623

Moab Solutions

Local Moab nonprofit · case management

Community-focused nonprofit serving Moab and Grand County with case management, advocacy, and support for families navigating complex needs. Often the right first call when you don't yet know who to call.

📞 (435) 401-4685

Utah ADRC

State-level support

Free, statewide information and assistance for aging, disability, and caregiving. They can also help with Medicaid waivers and community services.

📞 1-800-371-7897

Eldercare Locator

National

Nationwide public service connecting you to local Area Agencies on Aging and caregiver support services.

📞 1-800-677-1116

Your neighbors and community

Neighbor support

Informal support is often the most available and most meaningful. A neighbor who checks in, a friend who brings a meal, a family member who relieves you for an afternoon — these matter enormously. Giving someone a specific, concrete task — "Could you sit with Mom Tuesday afternoon?" — makes it easy to say yes.

What other caregivers have said

A few things worth knowing, from people who have been here

Reflections from caregivers who have walked similar paths in rural communities. Take what fits your situation; leave the rest.

"Asking for help earlier than I thought I needed to was the single most useful thing I did. Waiting until things were bad made everything harder than it had to be."

"I had to let go of doing this perfectly before I could actually do it sustainably. Good enough, repeated daily, beats perfect for a week and then collapse."

"Talking to someone who'd been through the same thing helped in a way nothing else did. Find one person who understands without needing it explained."

"Taking time for myself stopped feeling selfish when I noticed I was a better caregiver after I'd had any. The walk wasn't a luxury. It was the math."

More depth — open what fits you right now

Building real support around yourself

Each section below opens when you tap it. The goal is to make the page calm to land on — and the depth available when you want it.

Build a support network

The single most important thing you can do to keep caregiving sustainable. Five kinds of support to think about, and four concrete steps to actually build your network.

The most consistent finding in the caregiver-burnout research is that the caregivers who do best are not the ones who try hardest alone. They are the ones who built a network of people and services around themselves early — and kept it active.

Why a support network matters

Trying to do everything alone — especially while also working — is the most common path to burnout, mistakes, and resentment. Layered support reduces felt burden, lowers stress, protects your relationships (with the person you care for and everyone else), improves your psychological wellbeing, and measurably improves the care your loved one actually receives.

Five kinds of support to think about

Personal connections

The people most caregivers think of first — family, close friends, neighbors. Practical help (a meal, a ride, a few hours' relief) and emotional support (a listening ear).

Healthcare team members

Social workers, occupational and physical therapists, mental health counselors, hospice and palliative teams, and respite-care services. Expert support that can make daily care meaningfully easier.

Paid caregivers

Home health aides and other paid caregiving services. Even a few hours a week can lighten the load. The Utah Medicaid Waiver Programs and ADRC are starting points for figuring out what you may qualify for.

Workplace allies

Your supervisor or HR, an Employee Assistance Program, FMLA, intermittent leave. More may be available than you think — especially before things reach crisis.

Community support

Peer caregivers, in-person and online support groups, faith-based organizations, and community circles. The people who already understand what you are describing — and don't need it explained — are some of the most useful relationships you'll build.

Four steps to actually build it

1

Identify the people you can count on

Make an honest list. For each person, note their relationship to you, what specific kind of help they could realistically offer (groceries, a ride, sitting with your loved one, a phone call, an errand), how comfortable you'd feel asking, and any practical notes (their schedule, days they're free, anything to avoid). Vague offers like "let me know if you need anything" don't help — concrete asks do. This list is the foundation.

2

Map the professional and community services

Separate from your personal list, write down the formal services you can lean on: respite care, counseling, home care, support groups, an Employee Assistance Program through work, your loved one's care team. Note what each one provides, how to access it, and what it costs. Many caregivers have more available to them than they realize — once they actually ask.

3

Identify the gaps honestly

With both lists in front of you, look at what's still uncovered. Be honest about what is hard — physically, emotionally, or practically. Common gaps: transportation to medical appointments, time off work for caregiving, regular emotional support, help with care planning, a recurring weekly task. Naming the gap is half of solving it.

4

Take action — one ask per week

Don't try to fill everything at once. Set a small, sustainable goal: ask one person each week, for one specific thing, for the next six to eight weeks. Start with the person you trust most, or with the gap that's hurting you most right now. The worst answer is no — and then you try the next person on your list. For professional help, start with the Southeast Region Development Agency (SERDA, your local Area Agency on Aging) or a hospital care manager. They unlock programs and financial assistance most caregivers never hear about.

One more thing. Revisit your network often. As needs change — and they will — your network needs to change too. The most resilient caregivers treat this as ongoing maintenance, not a one-time project.

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Verified local respite — AmeriCorps Senior Companion

A federally-funded program that places trained companions with homebound older adults — active in Grand County. Companions can sit with your loved one, help with light tasks, and give you real time off.
Verified active in Grand County

AmeriCorps Senior Companion Program

A federally-funded volunteer program operated statewide by UServeUtah that places trained adults aged 55+ as companions to homebound older adults. Companions can provide socialization, light help with daily tasks (shopping, meal prep, rides to appointments), and respite for family caregivers. The program is active in Grand County; volunteer capacity varies, so contact UServeUtah directly about current availability.

Contact UServeUtah: (801) 538-3999 · [email protected]

UServeUtah AmeriCorps Seniors →

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AARP & national caregiver support lines

Free national caregiver support — the AARP Caregiver Answer Book, 24/7 lines (English and Spanish), free virtual support groups, AARP Friendly Voices, plus Family Caregiver Alliance and Caregiver Action Network.

Several excellent national organizations support family caregivers — most of these services are free, and you do not need to be an AARP member to use their resources.

AARP Caregiver Answer Book

A free excerpt from AARP's caregiver handbook that addresses the role itself — what it does to you, the complex feelings that come with it, and how to understand what you have actually signed up for. Many family caregivers say reading something like this earlier would have helped them.

Read the AARP Caregiver Answer Book excerpt →

AARP Family Caregiving — support line and resource hub

AARP operates a dedicated Family Caregiving support line staffed by specialists who can point you to caregiver programs, respite options, and support groups in your state.

Caregiver self-care articles

Improve your self-care

Direct, realistic strategies — no "go take a bubble bath" advice, no guilt trips.

AARP — Improve Self-Care →

Anticipatory grief

The grief that begins before the loss. Important for caregivers of progressive illness.

AARP — Anticipatory Grief →

Peer community & Friendly Voices

AARP Family Caregivers Facebook group — large, active peer community where family caregivers share their experiences. Visit the group →

AARP Friendly Voices — a free program of trained volunteers who will call and chat with anyone feeling isolated or anxious. Not crisis counseling; just a friendly voice.
EN: 1-888-281-0145 · ES: 1-888-497-4108 · 9 a.m.–5 p.m. local, Mon–Fri.

Other national caregiver organizations

Eldercare Locator

Public service connecting caregivers to local Area Agencies on Aging.

1-800-677-1116

Family Caregiver Alliance

Long-established nonprofit focused entirely on caregivers. Videos, fact sheets, free CareNav tool.

caregiver.org →

Caregiver Action Network

Free peer support, helpline, practical tools.

1-855-227-3640

Alzheimer's Association 24/7 Helpline

For in-the-moment dementia caregiving support, day or night.

1-800-272-3900

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For caregivers of Veterans

A dedicated VA National Caregiver Support Line (1-855-260-3274) staffed by licensed clinical social workers — connects you to local VA Caregiver Support Coordinators and benefits under Public Law 111-163. Most Veteran families don't know these resources exist.

If you are caring for a Veteran, the U.S. Department of Veterans Affairs offers caregiver support programs that are often overlooked. Most caregivers don't know these resources exist until well into their caregiving journey.

Start here

VA National Caregiver Support Line

A toll-free line staffed by licensed clinical social workers. They will answer questions, listen to your concerns, and connect you with a Caregiver Support Coordinator at your local VA Medical Center. The line also responds to questions about caregiver benefits under the Caregivers and Veterans Omnibus Health Services Act of 2010 (Public Law 111-163).

Phone: 1-855-260-3274

Hours (Eastern Time): Monday–Friday 8:00 a.m. – 11:00 p.m.; Saturday 10:30 a.m. – 6:00 p.m.

VA Caregiver Support →

The VA also offers respite care, the Program of Comprehensive Assistance for Family Caregivers (PCAFC), the Program of General Caregiver Support Services (PGCSS), peer support, and self-care courses. The Caregiver Support Line is the front door to all of it.

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Articles & guides — Family Caregiver Alliance library

When you're looking for real reading on a specific situation: hospital-to-home transitions, moving an aging parent, Personal Care Agreements (paid family caregiving), long-distance caregiving, sandwich-generation resources, and dementia care guidance with video library.

Family Caregiver Alliance (FCA) is a long-established national nonprofit dedicated to family caregivers. Their online library is one of the most reliable single sources of practical caregiver guidance — written in plain language, organized by situation, and free.

What you'll find in the FCA library

  • Hospital, transitions & safety — what to do in the days and weeks after a hospital discharge; printable post-discharge checklists; room-by-room home safety reviews for fall prevention.
  • Moving, relocating & living arrangements — the practical and emotional reality of moving an aging parent; deciding when distance, safety, or care needs make a move necessary.
  • Family arrangements & agreements — Personal Care Agreements (the document to use when a family member is paid for caregiving); long-distance caregiving guidance; resources for the "sandwich generation" caring for both children and aging parents at the same time.
  • Dementia care — communication strategies, behavioral guidance, and a substantial video library covering daily care and family decisions.
  • Self-care for caregivers — articles on burnout, stress, grief, and sustainability.

Browse the FCA library →

For the hardest moments — behaviors & communication

  • Resistance to care — when your person refuses help, bathing, medication, or to leave the house. Why it happens, and what tends to work.
  • "Parenting" your elderly parents — the emotional inversion that nobody warned you about, and how to navigate it without losing the relationship.
  • Communication strategies for dementia — practical guidance for talking with someone living with cognitive change.

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Anticipatory grief — for caregivers

The grief that begins before the loss. Common, exhausting, and rarely talked about. Trusted resources for grief during caregiving and after a loved one passes.

Anticipatory grief is grief that begins before a loss — for the person they used to be, for the relationship that has changed, for the future you'd imagined. It is normal, exhausting, and one of the most under-acknowledged parts of caregiving. Naming it helps.

Grief while caregiving

  • National Cancer Institute — Grief, Bereavement, and Loss (PDQ®) — one of the few top-tier clinical sources that explicitly defines and explains anticipatory grief. Applies broadly beyond cancer. cancer.gov/bereavement-pdq →
  • SAMHSA — Coping with Bereavement and Grief — covers grief that occurs before a death and how to process it proactively, from the federal behavioral-health authority. samhsa.gov →
  • Atlantic Health — Grief & Bereavement Support — practical guidance for families preparing for loss, with coping tools and support structures. atlantichealth.org →

Grief after a loved one has passed

  • National Institute on Aging — Coping with Grief and Loss — one of the most credible U.S. sources on bereavement for older adults and their families. Includes what to expect, where to find support, and realistic timelines for recovery. nia.nih.gov/grief →
  • Penn Medicine — Bereavement Services — clinical, hospital-based guidance on what to do after a loss: counseling options, support groups, and practical steps. pennmedicine.org →
  • NAMI — Finding grief support after loss — practical guidance on how to find support groups and normalize grief reactions. nami.org →
  • Hospice Foundation of America — Grief support — articles, videos, and resources for caregivers grieving before, during, and after a loss. hospicefoundation.org/Grief →

Locally: Moab Regional Hospital's hospice team is trained in both anticipatory and post-loss grief support, and can connect you with counselors in Moab even after hospice care ends. Call (435) 719-3500 and ask for hospice.

When grief gets stuck — Prolonged Grief Disorder & what helps

For the smaller number of caregivers whose grief, more than a year after a loss, has not started to ease. There is a name for this — and there is a specific therapy that works.

First, the most important thing. Most caregivers — about 90% — move through grief naturally over time, even when it takes years and never fully ends. What's described below is for the roughly 10% of bereaved people whose grief stays acutely intense and life-disrupting more than a year after the loss. If that's not where you are, this section is not for you, and your grief is not abnormal.

What Prolonged Grief Disorder is

Prolonged Grief Disorder (PGD) is a condition formally recognized in 2022 by the American Psychiatric Association. It describes grief that, more than a year after the death, remains so intense and persistent that it interferes with daily life — work, relationships, the ability to take care of oneself. It often includes a powerful sense of identity disruption ("part of me died with them"), avoidance of reminders, intense emotional pain, and a feeling that life has lost meaning.

It is more common in caregivers than in the general bereaved population — partly because caregiving so deeply intertwines identity with the person being cared for, and partly because the grief often begins long before the death itself.

What helps — Prolonged Grief Therapy (PGT)

Prolonged Grief Therapy (PGT, sometimes called Complicated Grief Treatment or CGT — they refer to the same approach, refined over twenty years) is a structured, time-limited therapy of about 16 sessions developed by Dr. Katherine Shear at Columbia University. In randomized trials, PGT has been shown to be roughly twice as effective as standard talk therapy for people whose grief is stuck — about two out of three people improve significantly.

"PGT is not about letting go of the person. It is about helping you stop being stuck in the moment of loss so you can live again — without losing your connection to them."

It works by gently combining two threads: processing the loss (gradually facing the parts of the loss that have felt impossible to face) and restoring life (rebuilding identity, values, and engagement with the world after caregiving has ended). The goal is not to "move on." The goal is to carry the relationship forward in a way that lets you keep living.

Trusted resources

  • American Psychiatric Association — Prolonged Grief Disorder — the authoritative patient-facing overview from the body that formally recognized the diagnosis. Plain language, including symptoms, prevalence, and risk factors. psychiatry.org →
  • Columbia Center for Prolonged Grief — the research home of PGT, founded by Dr. Katherine Shear who developed the treatment. Includes evidence summaries and a clinician finder. prolongedgrief.columbia.edu →
  • HealthCentral — Prolonged Grief Disorder explained — a clear, patient-friendly walkthrough of symptoms, diagnosis, and what treatment looks like in practice. healthcentral.com →
  • Association for Behavioral and Cognitive Therapies — Complicated Grief fact sheet — short, evidence-anchored explanation of the treatment and its outcomes. abct.org →

Finding a PGT-trained therapist locally: Few therapists in rural Utah are formally trained in PGT, but many local therapists have experience treating complicated grief using related evidence-based approaches (CBT for grief, ACT, and grief-focused therapy). The Columbia Center maintains a clinician directory, and many clinicians offer telehealth — which means you are not limited to who is physically in Moab. See the therapist guidance section for how to start looking.

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Preparing for end of life — for caregivers

For when the time ahead feels short. Organized into four sections: what to expect medically, legal and advance planning, emotional support specifically for caregivers, and a practical checklist of what to do after death.

If you are reading this section, you are likely facing one of the hardest things a caregiver faces. There is no rushing this. The resources below — all from highly credible national sources — are organized to help you find the right kind of support for the moment you are in: medical understanding, legal preparation, emotional grounding, and what comes after.

What to expect medically

  • National Institute on Aging — clear, compassionate, medically accurate guidance on what to expect near the end of life and how to care for someone in their final stages. nia.nih.gov/health/end-life →
  • National Hospice and Palliative Care Organization — gold-standard information on hospice care, timelines, and preparing for death. nhpco.org/patients-and-caregivers →
  • Mayo Clinic — Hospice care — trusted clinical explanations of hospice, palliative care, and end-of-life decision-making. mayoclinic.org →

Legal & advance planning

  • National Institute on Aging — Advance Care Planning — step-by-step guidance on advance directives, living wills, and healthcare proxies. nia.nih.gov/health/advance-care-planning →
  • PREPARE for Your Care — one of the most respected, easy-to-use tools for creating end-of-life plans. Free, available in English and Spanish. prepareforyourcare.org →
  • CaringInfo — free state-specific advance directive forms and legal planning tools, from the National Hospice and Palliative Care Organization. caringinfo.org →
  • Utah POLST & Advance Directives — official Utah forms and physician guidance, hosted by the Utah Commission on Aging. ucoa.utah.edu/coreissues/directives →

Emotional support for caregivers

  • National Alliance for Caregiving — research-backed insights into caregiver stress, emotional burden, and end-of-life realities. caregiving.org →
  • AARP — Anticipatory Grief — the grief that begins before the loss. Important reading for anyone caring for a person with a progressive illness. aarp.org →
  • Hospice Foundation of America — Grief support — articles, videos, and resources for caregivers grieving before, during, and after a loss. hospicefoundation.org/Grief →

What to do after death

  • USA.gov — What to do after a death — a straightforward checklist of what to do legally and administratively after a death. usa.gov/death →
  • Consumer Financial Protection Bureau — step-by-step guidance on handling finances, accounts, and estate matters after death. consumerfinance.gov →

Locally: Hospice care in Grand County is coordinated through Moab Regional Hospital. Call (435) 719-3500 and ask for hospice. Their team can walk you through what comes next, when the time is right.

You deserve support too.

Caring for yourself isn't separate from caregiving — it's the foundation it rests on.

Take the burden check 📍 Local Resources Caregiver resources

Moab CareLink is an independent community-based platform. Nothing on this site is medical or mental-health advice.