Emotional Tools
Caregiving for a loved one is both rewarding and challenging.
To sustain yourself on the journey, it’s essential to nurture your emotional well-being. This section explores self-care, setting boundaries, preventing burnout, and finding balance through mindfulness. It also highlights the personal growth, joy, and wisdom caregiving can bring — helping you navigate challenges with resilience.
The reality of the caregiving role is that someone else now depends on you. You are a critical variable in this equation.
A Critical Part of Your Caregiver Tool Belt Self-Care
Few people plan to be a caregiver; it’s often a job you were given, stepped into, married into, but never actually applied for. Understandably, that can leave many caregivers feeling ill-equipped for the role. Fortunately, there are “caregiver tools” that will help if you’re willing to use them.
Learning communication techniques that take the tension out of the room, having the right documentation at your fingertips in case of emergencies, or building an informal support system — are all tools that make the job of caregiving more manageable. One of the most important tools of all is practicing good self-care.
SELF-CARE, AGAIN?
Caregivers sometimes respond by saying they’re tired of hearing about the importance of self-care. But here’s
the thing, everyone says self-nurturing is important because it is.
Ask yourself, if you can no longer be the caregiver for your loved one, then what? Caring for yourself may not feel like the most pressing item on your to-do list; some may feel it’s selfish to prioritize caring for themselves when their loved one is sick or struggling. But the reality of the caregiving role is that someone else now depends on you. You are a critical variable in this equation.
FILLING YOUR EMOTIONAL GAS TANK
Imagine, if you will, that everyone on earth has an emotional gas tank with an allotted amount of emotional energy to get through each day. All kinds of things burn through our energy; people and situations can
leave us wiped out and ready for a nap, a good cry, or a heartfelt talk with a good friend.
We also have things that fill our tank! That nap, cry, or conversation could help you recharge. The things that burn our fuel and fill our tanks are different for everyone. Take the example of introverts and extroverts. Introverts are people who find comfort in solitude while spending time in groups depletes their fuel. The opposite is true of extroverts — too much time alone for an extrovert can leave them feeling depressed and frazzled, but a group setting can have them buzzing with energy.
Now that you’ve got the concept, I want you to start asking yourself questions: What burns my fuel? Also, what fills my tank?
REFUELING STRATEGIES
As a caregiver, you may already be starting your day with a low tank. You’ve got less time for yourself, less energy, and there’s a lot more demand for your emotional fuel. This means that knowing and using strategies to refuel becomes imperative.
Trying to run on no fuel? Well, that’s burnout. No one wants to burn out.
So, what puts a little gas in your emotional gas tank? Maybe it’s something small like gardening or window shopping. Maybe it’s a trip to see family, coffee with a close friend, or a walk. It could be a meditation, a prayer, or a breathing exercise that helps calm you.
Make a list! Keep your list handy so you can access it easily when you start to feel your fuel is low. Self-care is a critical tool in your tool belt. It’s like your level or your carpenter’s pencil. You should be pulling this tool out every day.
Setting Boundaries
PART 1
Caregiving is a profound act of love and service, but there can be a fine line between providing support and stretching ourselves too thin. Many of us struggle with defining healthy emotional space for ourselves. One critical skill for caregivers is the practice of setting boundaries.
Personal Boundaries
We all understand physical boundaries — a fence, a wall, or a sign that blocks off an area as a protected space. Personal boundaries are the limits we place around our time, emotions, body, energy, and mental health to stay resilient, grounded, and content with who we are.
Setting personal boundaries is essential for caregivers to protect their emotional well-being, maintain their physical health, and ensure they can continue to provide compassionate care. Healthy boundaries protect our physical and emotional energy by distinguishing what we can and cannot take on.
When boundaries are clearly defined and communicated, caregivers can create healthier dynamics with the people they care for and those around them. Boundaries help us give care while maintaining balance in our lives.
Recognizing Boundary Busters
These habits and behaviors can undermine your ability to set healthy limits and prioritze your own well-being.
1. NOT KNOWING YOUR LIMITS
Acknowledge your limitations.
No one wants to be finite, but we all quickly learn that time and energy are precious resources that require conservation. We cannot give 100% to all aspects of our lives. If you are giving more energy and attention to one area of your life, another area will have to receive less. Recognition of your own limitations, however frustrating, will be immensely helpful as you seek to define a healthy space for you and the person for whom you are caring.
2. PERFECTIONISM
Perfectionism and caregiving simply can’t coexist.
Trying to find the perfect care plan, plan the perfect daily routine, or just generally be the perfect caregiver will quickly lead you down the path to bitterness and never-ending frustration. Embrace the “good enough.”
3. PEOPLE-PLEASING AND CODEPENDENCY
Do you have trouble saying no?
Codependency, in its most pared down definition, means that much of your self-worth is dependent on how others perceive you. Though these patterns can start from a loving place, over time your own sense of self begins to hinge on the people around you. The patterns of communication and behaviors you develop around this need to please
or help others can quickly become draining and self-defeating.
Working to define your self-worth apart from others, voicing your wants and needs out loud, and allowing others to have thoughts and feelings that are different from yours are all part of the hard work necessary to break these patterns. A therapist can be a great resource in this journey.
4. GIVING IN TO GUILT
Guilt is one of the most powerful emotions many caregivers face.
Feelings of guilt make it hard to draw emotional boundaries and create a healthy mental space while caregiving. Some guilt may be normal and tied to the grief that many caregivers experience. However, when guilt starts calling the shots, dragging you down into deep depression, it’s time to put guilt back in its proper place. Know those feelings are normal, but don’t let guilt run the show. Remember we are all doing our best with what we have at any given point.
THE REWARDS
Though these hurdles can make setting boundaries more challenging, none is insurmountable. Many caregivers begin the hard work of improving their mental health while caregiving. Long after their caregiving journey has ended, the skills they build remain, and caregivers continue to reap the rewards.
Setting Boundaries
PART 2
Avoid Burnout With Boundaries
The Caregiver’s Pledge: “My time and energy are my most precious resources. My time and energy are worth preserving.”
When setting clear boundaries, it can be important to remind yourself of why this work is important. Boundaries protect you from burnout, preserving what is positive in your caregiving situation and in you.
Creating healthy boundaries and clearly communicating them to others is a critical tool in the caregiver’s tool belt. While setting boundaries comes naturally to some, many struggle with the process. Without boundaries, caregivers can feel overwhelmed and at the mercy of other people’s needs.
Setting boundaries is sometimes harder than it seems.
On the other hand, caregivers who do the work to set boundaries feel the benefits LONG after their caregiving journey is over! Healthy communication and healthy boundaries make for healthier relationships. Period.
1. IDENTIFY YOUR WANTS, NEEDS, AND YOUR LIMITATIONS
Pay close attention to situations that zap your energy or leave you completely overwhelmed. Are there certain people who regularly ask too much of you or create extra stress? What situations leave you replenished and refreshed? Draw a circle on a piece of paper. On the inside of the circle, write down the positive parts of life and caregiving that you’d like to preserve. On the outside, list those situations and people that can push you toward exhaustion and fatigue.
2. FINDING YOUR VOICE AND USING YOUR WORDS
Give yourself permission to ask for what you want and need.
There are many reasons you might struggle to voice your needs: fear of rejection and being disrespected, or a feeling that you must take responsibility for most things. The exercise of asking OUT LOUD for what you need — not hinting, not passive aggressively implying, not assuming others should know — is vital when setting boundaries. Use your voice. Use your words. For the best results, be clear and concise.
3. AVOID UNSPOKEN EXPECTATIONS
It’s easy to fall into the trap of thinking others will know what you need as a caregiver.
When it comes to setting clear boundaries, don’t assume others understand your day-to-day
situation or can read your mind. Conversely, do not assume to know the thoughts of others. Ask questions. Find out the answers. If someone says something isn’t a problem, believe them. If you say you are comfortable with a certain situation or request, make sure that’s true.
4. NO MEANS NO, AND YES MEANS YES
The words “no” and “yes” are very powerful.
Be cautious about what you say yes to and consider carefully when you need to say no. Give yourself time to think and avoid snap yes or no decisions. As an example: When your family calls with big plans to celebrate your mom’s birthday, ask for time to decide. Give a clear deadline: “I’d like to think about this for a week and get back to you on whether I feel this will work.” In this particular scenario, you might say yes to parts of the suggestion and no to others. For example, you may say, “Yes, I’d love for everyone to come into town to celebrate Mom. No, I don’t think everyone being at a large party would be helpful. It would overwhelm both her and me.”
5. CONSIDER OFFERING ALTERNATIVES WHEN SAYING NO
Suggesting alternatives is a helpful way to reinforce a boundary while maintaining positive relationships.
For this same example, you could say “A large party would be too overwhelming for mom and me, but having folks come by the house in small groups might really be enjoyable for her.”
Simply put, mindfulness is the practice of noticing your surroundings, your emotions, and your thoughts without reacting to them or jumping to judgment.
Mindfulness for Caregivers
Mindfulness is a life-enhancing tool for caregivers. Mindfulness practices are getting a lot of buzz these days, fueled by a growing number of studies on the benefits they provide.
CLINICAL SUPPORT FOR MINDFULNESS
Did you know that studies done through Harvard University and Massachusetts General Hospital using magnetic resonance imaging have shown that mindfulness and meditation practices can change your brain by increasing gray
Mindfulness Exercises
matter as well as reducing activity in your amygdala, the “fight or flight” response area of your brain? In addition to helping with daily coping, mindfulness is an emotional tool that can offer physical improvements to your brain health. Simply put, mindfulness is the practice of noticing your surroundings, your emotions, and your thoughts without reacting to them or jumping to judgment. Practicing mindfulness is about training your brain to stay in the
Mindfulness of the Breath and Body
Start with mindfulness of breath, focusing on breathing in and out. Expand your attention to other parts of your body. Notice your posture and any areas of tension in your body. Try to relax your face, your shoulders, or your hands. Notice the sensation of releasing the tension.
present moment, a place that our brains usually don’t like to hang out in for very long.
TRY IT YOURSELF
Try sitting quietly while observing your breathing. Close your eyes. Breathe deeply in and out, focusing your attention on your breath. Notice each in-breath and each outbreath. How long can you do this before your attention gets pulled elsewhere? Did you notice when it wandered? What thoughts were the first to intrude?
Our brains are natural dot connectors. By default, our minds like to sort, connect, compare, plan, and scan for threats. Not surprisingly, our brains are designed to think. The act of quieting your mind — staying present in the moment — is a skill that has to be learned and practiced. You can absolutely improve these skills over time.
A TOOL FOR TIMES OF OVERWHELM
You may wonder how this applies to you as a caregiver. Training your brain to pause and stay grounded in the present moment can help keep you from jumping into reaction or judgment. An effort to pull oneself back to the present moment is a reminder that, though the sum of the needs you’re facing may be too great, the immediate next step is often something you can manage.
Five Senses
Grounding Exercise
Wherever you are, notice each of your five senses. Notice what you can see, what you can touch, taste, smell, and hear. This can be especially helpful if you start to feel overwhelmed and disconnected from your body.
Caregiving
Adjusting Expectations Around the Holidays
You may look forward to the holidays with uncontrollable excitement or dread; of course, most of us fall somewhere in the middle of that vast spectrum. Our emotional response to the holiday season is in part determined by the level of expectation we put upon that time of year. Take the following steps to adjust expectations and avoid becoming overwhelmed.
IT CAN BE WISE TO PLAN AHEAD
As you think through your holiday to-do list, take a critical look at your currently available time and energy levels, as well as the functionality of the person you are caring for. Try your best to be objective and realistic about your limitations and hopes for the holidays.
IT’S OK TO ADJUST
With added responsibilities, it’s normal and even expected that parts of your regular holiday celebrations would be different. Adjust your expectations for yourself and your loved one if needed. Leave space for flexibility in holiday plans. And if the usual tasks and todos overwhelm you and cause stress, consider adjusting those plans so they feel more manageable.
IT’S OK TO SAY NO
Sometimes the necessary adjustment to plans is a gentle refusal to take part the same way you have previously. “I’m sorry, hosting the holiday dinner is a little too much for me this year, but I’d be happy to bring a side dish.” “I only have the time and energy for one
holiday party this year, and I’ve already committed myself. I’m sorry I won’t make it this year.” Remember, when setting boundaries, it’s helpful to be clear — not only about what you cannot do but also what you can do.
IT’S OK TO ASK FOR HELP
If parts of the holidays feel overwhelming, consider asking a trusted friend or family member for some extra support. You can also consider formal support options to get a little breathing room. What can be delegated? Someone else can put up Christmas lights, watch your loved one while you shop, address your holiday cards, and even make your holiday dinner.
PRIORITIZE SMALL MOMENTS OF JOY
Don’t fall into the trap of thinking it has to be all or nothing — prioritize small joyful moments instead.
Just because the experience doesn’t look the way it used to, you don't have to scrap plans altogether or cancel the holidays. Consider what parts of the holiday bring you and your loved one joy. Are there ways to incorporate these things on a different scale or adjust activities so they are less stressful?
Can fewer decorations be enough?
Can family gatherings be more casual or done virtually? Instead of a large formal sit-down dinner with family, what if you plan a pizza night with a holiday movie? Why not tour holiday lights rather than putting yours up?
Instead of a flurry of obligations and activities, focus on the parts of the holiday season that help you feel present and connected with those you love.
Practices for Navigating Holiday Grief
Suggested ways to find solace and remember loved ones during the holidays
1. A display of photos to encourage reminiscing –Funny or heartfelt stories bring back memories and allow all to share in celebrating your loved one’s life. Create a space for people to write their favorite memories for you to reflect upon later.
2. Keep a loved one’s memory alive by partaking in their personal holiday traditions – Hang their stocking on the mantle, donate to their favorite charity, or purchase gifts you know they would love and donate those gifts to a nursing home or homeless shelter in their name.
3. Visit or spend time in a place they loved – Watch their favorite Christmas movie or make their favorite dish.
4. Gift personal items –Gift some of your loved one’s personal treasures to family members.
5. Spread joy – Lift the spirits of someone who may be lonely with an invitation to spend the holiday with you and your family.
6. Most importantly, take care of yourself – Focus on giving back and looking forward.
Finding Comfort During Holiday Grief
Honor Loved Ones and Yourself
The holiday season is a time of joy, family, and togetherness, but for those who have lost a loved one, it can also heighten bereavement. Navigating these emotions amidst celebrations can feel isolating as traditional festivities highlight the absence of the person we have lost. Finding ways to honor and remember them can bring comfort and provide a sense of connection that enriches the season in unique and meaningful ways.
BLENDING PAST AND PRESENT
For some, this might mean setting a special place at the table or sharing stories that keep their loved one’s memory alive. These moments can help blend the joy of the present with reminders of a loved one at past celebrations.
Making new traditions is a part of the normal grieving process. Honor your loved one by sharing stories, cooking
their favorite dish, or recreating one of their favorite holiday traditions. Incorporating new activities while recognizing past traditions allows you to acknowledge your loved one and their memory.
FINDING A WAY FORWARD
The holidays mean surrounding yourself with those you love. Let others know the season is a difficult time and give yourself room to work through the mourning experience. If you become overwhelmed, respect your own needs first if the celebrations are too much to bear.
Whether you’re grieving or supporting someone who is, these practices provide ways to balance sorrow with joy, and remembrance with celebration. Use these compassionate and personal ideas to help you honor lost loved ones this holiday season, ensuring their memory shines as brightly as the holiday lights around us.
“I learned to be kind to myself, remembering I was giving my best.”
Joy & Growth in Caregiving
Focus on the Positive
Caregiving isn’t an easy gig. However, while validating the difficulties, we shouldn’t lose sight of the positive aspects of caring for those we love. Sure, it can be a thankless job that goes largely unnoticed by others, and yet — time and time again — caregivers find fulfillment and purpose in their roles. They find strengths they didn’t know they possessed, break patterns of thinking and behavior that had weighed them down for decades, and achieve tremendous personal growth that stays with them long after their caregiving journey has ended.
Research backs this up! Though there is far more research looking at the negative effects and burden on caregivers, there is a growing number
of studies trying to understand the mental health benefits of caregiving. Studies from 2007 and 2009 have defined positive psychological effects like showing greater appreciation of life, increased self-esteem, closer relationships, enhanced self-efficacy, more feelings of competence and mastery, and personal growth.
Let’s hear from some caregivers who have completed their journey in the last few years and learn what positives they took away from their time as caregivers.
Stephanie Farquhar cared for her husband with Parkinson’s in her home until the end of his life. “If I had it to choose,” she said, “I would choose to be his caregiver again!” When
asked what she would impart to other caregivers, she said, “You can do more than you think, learn more than you thought possible, and love deeply in the midst of loss.”
Karen and George Rose cared for her mother and echoed the lessons learned. George said he “learned the importance of teamwork,” while Karen shared, “I learned to trust myself and the professionals surrounding me, educating me through each stage. I learned to be kind to myself, remembering I was giving my best. As I look back, I am so thankful I had the privilege to care for my mom.”
Joanne Sellers and her husband Jack provided care for both of her parents. “I cherish those years. I got to spend such wonderful times with them. We went from seeing them two or three times a year to really getting to know each other as adults.”
Becky Bowles cared for her husband Bill. “We found so many ways to laugh together,” she recounted. “We enjoyed looking at photo albums, and I heard some new stories. We went on walks together, holding hands and taking time away from everyday tasks.
“And of course, I can’t forget the butterflies! Studying and raising monarchs with Bill kept us focused on something positive!”
J.B. Hunt cared for her spouse and shared that she learned, “We can find joy and humor in everyday situations, and it’s OK if the house is dirty. It’s OK if we eat cheeseburgers five days a week or more. And sometimes we can simply slow down and watch the world go by and enjoy each other’s company.”
Lessons From the Journey Insights for Caregivers
Caregivers who have completed the journey are a gold mine of hardearned wisdom. The following “veterans” were happy to share their experiences to encourage those still on the caregiving journey.
Many offered guidance on interacting with a loved one now needing care as family roles change. A spouse may take on responsibilities they've never managed before. Adult children may reverse roles with their parents, stepping into a protective position.
One caregiver advised, “Your role changes and that feels strange, and yet you must give yourself permission to take on the new role. When possible, ask your loved one what preferences they have. Continue to hug and
express your love for them. They need that for reassurance and to remind them of their value.”
THE IMPORTANCE OF NORMALCY
Those who cared for a loved one in their homes strongly recommended keeping the same routine as much as possible. “Continue to have friends come and go to maintain some normalcy — you both need interaction with other people!”
“Continue doing what you have always done together, like TV programs you always liked to watch together, attending sporting events, having family over for a Sunday dinner.” One woman who took care of her husband recommended keeping your loved one involved with the
tasks they’ve always done. By making slight adjustments or sharing parts of the task with others, they continued doing what they'd always done. It just took longer.
Many strongly encouraged getting help from family, friends, or professionals to give yourself a break. “A sitter for even five hours a week can give you peace to run errands, catch a friend for lunch, or do something you like that helps you not lose yourself.”
Practical advice included keeping a notebook that has all the information that might be needed when friends, family, or professional sitters come in, including medication lists and dosage routines, emergency numbers as well as phone numbers for neighbors, food preferences, things your loved one might like to talk about, or activities they might enjoy, and “the alarm code in case they hit the pad by accident and need to shut it off!”
LAST THINGS FIRST
All suggested having end-of-life discussions as early as possible. Your loved one may want to actively plan a memorial service such as selecting photos and music. “Get all legal papers in order, get help with finances, and know the laws of Oklahoma. Ask their wishes before they can’t give you an opinion,” a caregiver said.
Nearly all of the veteran caregivers urged getting help through individual counseling and support groups. One caregiver stated, “I believe that one of the best things a caregiver should do is get involved in a support group of people going through the same trials as you. There is much knowledge to be had and you’ll be surrounded by people who truly care how you are functioning.”
Practical Tools
Having the right tools for the practical demands of caregiving can make the journey smoother.
This section covers essential legal documents, grab-and-go records for emergencies, respite care options, and helpful technologies. With proper planning and resources, you can reduce stess, stay organized, and ensure your loved one receives the best possible care.
Legal Documents
Taking on the care of another person or persons can quickly become a logistical nightmare, but a little proactive preparation can make all the difference when it comes to caregiving.
The legal documents necessary for your role as a caregiver are tools that can be likened to blueprints needed for construction.
These tools can help you see the big picture while also allowing you to do the job effectively.
Pssst… it’s also good to have all these documents for yourself too!
The following legal planning documents should be considered early in the caregiving journey if they aren’t already in place: a power of attorney, a living will or advanced directive, and a last will and testament or a trust.
Note that nothing in this article should be construed as legal advice. Please, do your research and talk to an estate planning professional about steps to get these documents in place.
Crucial Documents
1. POWER OF ATTORNEY
A power of attorney (POA) authorizes someone else to handle certain matters, such as finances, on your behalf if you become incapacitated. Typically, a person names a trusted family member or friend as their agent to act on their behalf. It is recommended to have both a power of attorney for healthcare and a power of attorney for property. The agents can be the same for both documents or they can be different. Powers of attorney are only effective during your lifetime; after your death, your power of attorney is no longer effective.
The POA is an inexpensive alternative to a court-supervised guardianship which is necessary when a person becomes incapacitated without a POA. It is strongly advised to consult an attorney to draft a POA. If a person becomes incapacitated without a POA, the court will appoint a guardian to take care of the person or their property.
2. ADVANCE DIRECTIVE FOR HEALTHCARE
An advance directive for healthcare, or living will, is a legal document that allows people 18 or older and of sound mind to inform physicians and others of their wishes to receive, decline, or withdraw life-sustaining medical care; appoint a healthcare proxy to make medical decisions when they are no longer able; and donate specific organs or the entire body for transplant or
research. It’s not the same as a “Do Not Resuscitate” order.
The advance directive is only used if your physician and another doctor both determine you are no longer able to make medical decisions. An Oklahoma advance directive for healthcare can be downloaded free at the Oklahoma Department of Health website, the Oklahoma Bar Association website, and legalaidok.org.
3. LAST WILL AND TESTAMENT OR A TRUST
These are two different documents that serve similar purposes. Have a conversation with an attorney to decide which is best for you. A last will and testament provides instructions for what should happen to your assets after your death. When a person dies without a valid will, their property is distributed through probate in accordance with state law.
A revocable trust creates a separate “living” legal entity with a “life” that continues after you die. During your life, you control the trust. You appoint a successor trustee to follow your wishes after your death. Any property transfered into the trust will not have to be administrated in probate court.
A trust can customize the way beneficiaries receive their share of the trust, make special distributions to individuals or charities, and protect the beneficiary’s inheritance from creditors or other court proceedings such as divorce or bankruptcy.
Grab-and-Go Documents
As a caregiver, you want to make things as easy as possible for yourself and your loved one. Having important documents gathered in advance will save you from having to search for what you need while under pressure.
Here is a full list of documents caregivers should have on hand for their loved ones — or, at a minimum, know where the documents are located. “On hand” simply means easily accessible. It
can mean printed copies you keep within arm’s reach. Place printed copies in looseleaf notebooks that can be left at the care recipient’s home and in your car or home as well — somewhere they can be easily found. In this digital world, it’s also a good idea to have easily accessible digital copies scanned on your computer or stored in a secure folder or app on your smartphone so that you can email them on short notice.
Documents to Keep Safe
Documents to Have on Hand
1. Copy of driver’s license and insurance cards
2. Copy of power of attorney, advance directive, and do not resuscitate order (if you have one)
3. An ongoing log of current medications (as well as any recent med changes)
4. Lists of all doctors with their contact information and if possible, bonus points for including the name of the nurse or office person that communicates most with you
5. Any critical passwords you may need to log in to a cell phone, a home computer, electronic medical records, or places where the above-listed documents might be digitally stored
You might be asking if all of this is necessary, and the answer is a firm “maybe.”
Part of being a caregiver is preparing for the unexpected. When the unplanned and unexpected come your way, you’ll be glad to know that you have some of the tools and information that may be necessary in places where you can easily access them.
The list of current medications can truly be a lifesaver if your loved one is admitted to the hospital or establishes new medical services. Some older adults are on multiple medications and missing a dose or two could be critical. Make more than one copy and keep it at home and in the car. Take a photo of the list with your cell phone as well!
Understanding Respite Care Essential Breaks for Caregivers
Respite care is the care provided to your loved one that allows you, the caregiver, to take a break. Many caregivers would agree that they could use a break but are unclear on how to get the support to make it possible.
Family and friends might offer brief informal respite support for a short period — providing caregivers the chance to stay involved with hobbies, take vacations, and recharge. In addition to informal respite options, caregivers might also seek grantfunded or private-pay options to get some time off.
GRANT-FUNDED RESPITE CARE
The Older Americans Act provides federal funds that are then matched by the states and distributed through a national network of Area Agencies on Aging. More than 20,000 service providers, including tribal
organizations, help deliver social and nutritional services to older Americans and caregivers with this funding. Learn more about your local Area Agency on Aging by calling (800) 211-2116. If you are a caregiver living in Tulsa, Creek, or Osage County, there are currently four respite options:
• Companion Aide — Provides companionship and supervision and some assistance with light household tasks when approved.
• Personal Care — Provides personal hands-on care during the respite visit.
• Adult Day Services — Safe and therapeutic settings for at-risk seniors.
• Respite Vouchers — Provides vouchers to pay for care providers (including family, friends,
grandkids, or professional caregivers) while the caregiver takes a break.
There are no income requirements for the grant funds. Recipients qualify when they are caring for someone over the age of 60 and are using the funds to take a break (e.g. you cannot use the funds to go to work). All respite options require an in-home assessment by an outreach worker to determine the needs of the caregiver and the care recipient.
RESPITE CARE IN RESIDENTIAL OR LONG-TERM CARE COMMUNITIES
Many assisted living communities and nursing home facilities have shortterm respite options available for a per-day rate. Respite rooms are fully furnished and the cost includes access to the community’s amenities and services, including meals, medication management, and assistance with personal care. Since the cost is substantial, it can also be worth the time to shop around and compare per-night rates.
HOSPICE RESPITE BENEFITS THROUGH MEDICARE
If your loved one is on hospice, Medicare will cover short-term inpatient care for five consecutive days to allow caregivers relief from care duties. This care must be provided in a contracted, Medicare-certified hospital or skilled nursing facility.
Caregivers need and deserve to get breaks now and then, to take care of themselves to better care for the ones they love. These respite care options are one way to ensure that everyone involved is getting the help and support they need.
Consideration of technology is an important process. You often hear people talk about their favorite technology and how it helps them, but it is important to consider your specific needs and the goal or outcome you are trying to achieve.
Here are a few tips when considering technology:
• Ensure your selection suits your needs and preferences.
• Focus on practical uses — something too complex or too simple may not always be ideal.
Technology of Independence
What is all this talk about technology?
Why do you need it; how can you use it; and what is the difference between some of the terms you hear?
Terms and Definitions Making Informed Decisions
• Consider tech you already use.
• Take time to familiarize yourself with new devices.
For a more guided experience, ABLE Tech offers hands-on demonstrations to explore technology for independent living solutions. Visit Smart Home Demonstration Sites in person or virtually. Contact ABLE Tech toll-free at (800) 257-1705 or go to okabletech.org for more info or to schedule a consultation.
These technologies help individuals maintain independence when caregivers are away, increasing selfdetermination and decisionmaking for a better quality of life.
Oklahoma ABLE Tech, an Assistive Technology Act Program that serves the state of Oklahoma, deals with technologies of all kinds every day. In this article, we dive a little deeper to explain how technologies might be useful in your life.
Explore the definitions of assistive technology, durable medical equipment, enabling technologies, remote support services, and smart home technologies.
1. ASSISTIVE TECHNOLOGY (AT)
Assistive technology is any item, piece of equipment, or product system that is used to increase the functional capabilities of an individual with a disabling condition or limitation, allowing them to do something they would not otherwise be able to do. AT can be bought off the shelf, modified, or customized. AT helps people who have difficulty with speech, hearing, vision, accessing a computer, daily living (dressing, grooming, bathing, and eating), mobility, vehicle access, learning, and even recreation.
2. DURABLE MEDICAL EQUIPMENT (DME)
Durable medical equipment can withstand repeated use, serves a medical purpose, is appropriate for use in the home, and is likely to last at least three years.
3. ENABLING TECHNOLOGIES (ET)
Enabling technologies include sensors, automated medication dispensers, software applications, electronic tablets,
smart devices, and other items that enable individuals to gain or achieve independence.
5. REMOTE SUPPORTS (RS)
Remote supports aid individuals with intellectual and developmental disabilities in place of physical staff presence. Remote supports can monitor the health and safety of the individual, help them communicate through live phone calls or video chat, and provide an emergency response when needed.
6. SMART HOME TECHNOLOGY
Smart home technology allows individuals to control appliances, thermostats, lights, and other devices remotely using a smartphone or tablet connected to the internet. Smart home technologies may include enabling technologies, assistive technologies, and durable medical equipment. All of these provide individuals with disabilities the opportunity to be more independent in their homes.
Support Tools
Caregiving works best when it is a team sport.
This section covers topics like building a reliable support network and improving communication with care partners, medical teams, and loved ones. Clear, compassionate communication fosters collaboration and ensures your loved one’s needs are met with dignity and respect.
Learning about a diagnosis your loved one faces will pay off again and again.
Understanding a Diagnosis
Ways to find reliable information
Understanding whatever diagnosis or issue your loved one may be struggling with is a very useful tool to have in your tool belt.
Benjamin Franklin said, “an investment in knowledge pays the best interest,” and that rings true again and again for family caregivers. Knowledge can come from all sorts of sources these days, so it’s important to find good resources to help educate yourself as a caregiver and learn some of the important questions to ask.
FIRST STEPS AFTER DIAGNOSIS
A new diagnosis can be frightening, and the first place to start asking questions is with the doctor
who provided that diagnosis. Since doctors (and most medical professionals) probably won’t have time to sit down for an in-depth discussion, start with the most immediate information you need to know:
1. What does this diagnosis mean for the immediate future?
2. Can you tell me what kind of treatment is available?
3. Can you point me to resources that might help as I learn more about this diagnosis?
4. What kind of immediate and long-term follow-up appointments should we plan for and expect?
Questions about medications are always important to ask, and it’s 100% OK to seek a second opinion. Many physicians have social workers and therapists on their staff now, so seek them out if the option is available to you. They tend to have more time to spend with patients and can sometimes assist with care planning.
WHERE TO TURN FOR HELP
When starting your information search, check out organizations that make it their mission to support individuals with similar diagnoses and help fund research to end disease — organizations like the American Cancer Society, Alzheimer’s Association, Oklahoma Parkinson’s Alliance, National Multiple Sclerosis Society, and others. These organizations usually provide free information through their websites and pamphlets. They can often connect you to support networks and education opportunities in your community.
WHERE TO USE CAUTION
Keep a healthy amount of skepticism for websites and books that try to sell you something, make sweeping claims, encourage you to follow their specific protocol, or use their specific products. Look for information based on evidencebacked research, and remember that seldom — if ever — is there one perfect path or protocol that will be a solution for every single person.
You also can’t beat an old-fashioned classroom. Caregiver education and support groups are available through LIFE Senior Services.
Asking for Help
A huge part of building support is asking for help — and for many, it can be a daunting task. Here are some tips that may help you build your own support system.
1. BE SPECIFIC
A general “I need help” won’t always work. Ask for specific things that do not need to be done exclusively by you. Consider starting with things like yardwork, cooking, transportation, phone calls, or visits to give you a break or offer socialization and entertainment.
2.
THE WORST THEY CAN SAY IS NO
There’s very little harm in asking asking for help! Yes, some people might disappoint you. But there are several that might surprise you as well.
3.
ACCEPT HELP
Time and time again I hear caregivers turn down help that’s offered because they don’t want to be a burden. Allowing others to help you is not admitting weakness or defeat, it’s giving others the chance to be of service. Beyond the relief it can provide for you, asking for help gives others the chance to feel like they are contributing. Not asking cuts them off from what can sometimes be a very rewarding experience. If you are turning down help, ask yourself the hard question of why. Being a good receiver of help takes a fair amount of practice, but it’s a beautiful and worthwhile skill to hone.
Building a Support System
Building a support system is one of the important tools in your caregiver tool belt. There are two kinds of support, informal and formal.
BUILDING AN INFORMAL SUPPORT TEAM
An informal support team is usually comprised of family members and friends. Not just your friends; consider the person you are caring for — their friends and family as well. Think of their breakfast buddies, neighbors, bridge group, former coworkers, and church congregation. Has someone offered their help or support? Don’t brush off these offers. Keep a written list of people who say they are willing to help.
Another way of building support is making sure that others are aware of the situation so they may recognize the ways they can help. Many people use Facebook to ask who would like to stay informed. People who respond can then be invited to a private group where you regularly share posts regarding care needs and other updates. Some families will start a “family and friends” text or email thread. Consider starting a blog or utilizing an app that is specific to caregiving like Caring Bridge, Carely, or Lotsa Helping Hands.
BUILDING A FORMAL SUPPORT SYSTEM
Formal support includes the professionals, agencies, nonprofits, and organizations that exist to help provide care for your loved one (and for you).
These formal support systems are also a part of your caregiving team. The doctors, nurses, your therapist, caregiving agencies, adult day health centers, the support group that you’ve joined, and the education classes you’ve signed up for are all resources that can help support you along your caregiving journey. It’s what they are here for!
NOT SURE WHAT’S OUT
THERE?
If you are in Tulsa and surrounding areas, call LIFE’s SeniorLine at (918) 664-9000 or toll-free at (866) 664-9009.
Another great resource is LIFE’s Vintage Guide to Housing and Services at LIFEseniorservices.org under the Resources tab.
1. COMMUNICATE EARLY AND OFTEN
Communication for Caregivers PART 1
Communication can either make or break the caregiving journey. Caregivers who use communication tools adeptly help themselves, their loved ones, and their care team feel understood and included. Communication can also go wrong and — at worst — tear families apart at the seams.
Communicating as Care Partners
We’ll discuss three categories of communication:
1. Communication with your loved one
2. Communication with your care team
3. Communication tools for dementia
Focus on communicating with the person you are caring for.
We hope these ideas will serve as reminders during times of stress when communication is more challenging.
When it comes to caregiving, it’s becoming common to refer to the person you are caring for as your “care partner.” This term reframes the caregiving relationship and helps you remember you are on this journey together. Most communication — especially challenging conversations about end-of-life planning — is best done early in the process. Don’t put off these conversations if you can help it. Remember that you are on the same team and working towards (hopefully) a common goal. Find out what that goal is. Build trust if you can. Check in repeatedly and make sure needs are being met for you both.
2. VALIDATE FEELINGS WITH COMPASSION
Remember that your loved one didn’t ask for this. Most people requiring care are at the mercy of their diagnosis and are often fighting a battle that you, as the caregiver, can’t fully understand. Embrace empathy; ask about their struggles and listen to the response without trying to fix anything. Try to actively appreciate the journey they are on as individuals.
Validation can be described as “seeing out loud.” As you engage with your care partner, verbally acknowledge their feelings and struggles — “I can see that you are frustrated and that makes sense. This is hard.” Communicating this way may feel strange at first and may take practice. If you are someone who likes to solve problems,
pay special attention to this way of communicating. It’s easy to bulldoze over the emotions of your loved one in an attempt to “make it all better.” Some things can’t be fixed. That’s OK.
3. START WITH RESPECT AND PRACTICE PATIENCE
Your care partner is still the same person — and they also aren’t. Chronic or progressive illness will inevitably change someone. As a caregiver, you have both the privilege and the burden of knowing your loved one before they needed care. Respect doesn’t mean you do everything your loved one asks at all times, but it does mean listening to their point of view and considering their wants and needs alongside your own. Practice patience.
4. MAKE SPACE FOR GRIEF
The caregiving journey comes with change and loss. You are actively grieving as you provide care. Be familiar with the emotions surrounding grief: denial, bargaining, anger, depression, acceptance, and more. Normalizing these feelings for yourself can be incredibly helpful as you navigate them.
It’s also important to remember that your care partner is grieving as well. They are experiencing profound change and loss and are allowed to grieve, just like you are.
Acknowledging that your care partner is also wrestling with grief may help you better understand and relate to their actions.
Communication for Caregivers PART 2 Communicating With Your Care Team
Your care team is a combination of informal and formal support systems — your family, friends, and social circles, as well as the medical providers, home health agencies, long-term care staff, and any other agencies providing support. The following guidelines can help you as you navigate the caregiving journey.
DON’T MAKE ASSUMPTIONS
Caregivers often get frustrated that friends and family don’t offer to help more. It may be more a lack of knowledge than willingness.
Don’t assume family, friends, and others understand the challenges you face as a primary caregiver. Consider creating a time and space for regular updates to your care team
whether done in person, over the phone, or through a group email or text. Make them quarterly, monthly, or after every doctor’s appointment.
Hit the high notes. Are there any changes you are noticing? Are there any successes you’d like to share? What are the current challenges? Are there any upcoming needs?
More often than not, family and friends will find the information helpful, and the updates will keep them better informed of your caregiving situation.
MAKE CLEAR REQUESTS
Keep a written list of people who offer to help and a second list of dayto-day tasks that could be delegated. Include actions that could allow you
to have more time and energy for self-care. For example, a regularly scheduled phone call from a family member or friend would help provide some entertainment and joy to your loved one, or a friend taking them to lunch once a week would give you some respite and a chance to work on projects at home. Write all of these things down.
Next, take the two lists and mix and match. Ask the people who have offered, and be very specific about what would be helpful to you.
PLAY TO CARE TEAM STRENGTHS
People on your care team have different strengths. One may be willing to provide hands-on help while another may be good at managing the respite care calendar. When someone providing respite was unable to make it, the “manager” could be responsible for arranging replacement coverage.
Consider the strengths of the members of your care team and also — don’t be afraid to think outside the box!
USE TECHNOLOGY
Mass communication is easier than it’s ever been. Caregivers can use email, text messaging, blogs, group texting apps, and social media to create a space for giving updates and making requests of their care team. Consider creating a private Facebook group, or using some of the caregiving apps to help you more easily communicate with your team. New websites and apps are coming out all the time, but several tried and true options to look at include Carely, Caring Village, and Lotsa Helping Hands.
Communication for Caregivers
PART 3
When Your Loved One Has Dementia
The following tips will help you better communicate with a loved one who has been diagnosed with dementia.
Practice patience when it comes to repetition. It will be increasingly common for your loved one to repeat the same questions and conversations. For them, the 15th time they’ve said something still feels like the first. Don’t confront their memory loss or ask them to remember. This will only increase the stress they are under.
Don’t argue with a person who has dementia. Their logic and reason are impaired. Instead, use communication tools to distract or redirect them to another topic. Validate their feelings with simple replies like “I hear you are frustrated, and I’m on your team.”
Provide reassurance that they are safe, that they aren’t alone, and that they are loved. Many people with dementia have increased anxiety and impaired coping skills. De-escalation is the name of the game. Stay calm, even when they don’t.
Consider your approach and body language. Increasingly, people with dementia will look to those around them to set the tone or mood.
Try simple sentences and repeating the same phrase or question (instead of rephrasing).
Meet your care partner where they are — join their reality. A deceased loved one is real to them, so simply say that person is elsewhere right now.
Tax Credit?
Learn more about the Oklahoma Caring for Caregivers Act
The Caring for Caregivers Act allows individuals caring for a loved one to claim up to $2,000 in tax credits from the state or $3,000 if the care recipient is a veteran.
These tax credits help qualifying families defray the expense of caring for a loved one. To be eligible, those receiving care from a family member must be 62 years old, require assistance with at least two activities of daily living, and live in a private home. Caregivers must have an income of less than $50,000 if single and $100,000 for joint filers. Individuals receiving the care must qualify as a dependent, spouse, or blood relative. Form 592 must be filed with your state tax return and receipts of expenses. Do You Qualify for a
Would You Like More Information?
Visit the Oklahoma Tax Commission website at oklahoma.gov/tax or talk with your accountant or tax preparer.
Care Planning Tools
Planning
for
care can feel overwhelming, and thoughtful preparation makes a difference.
This section explores key care planning questions, Medicaid options for in-home support, and when to consider long-term care. You’ll also find guidance on hospice conversations — helping you make informed choices that honor your loved one’s needs and wishes.
Care Planning
Every single person needing care has different preferences, different support systems, different financial situations, and different physical and mental issues requiring different types and frequencies of care. Care planning is not “one size fits all,” and the care recipient’s needs will likely change over time.
So no, it’s not a simple topic.
What can be a little simpler are the initial questions you, as a caregiver, need to ask yourself when beginning the journey of care planning. These questions are tools in your caregiver tool belt that can help you refocus, revisit, and clarify the care planning discussion. Let’s go back to the basics and make sure we aren’t missing the forest for the trees.
For help with resources, contact LIFE Senior Services' SeniorLine at (918) 664-9000, ext. 1184.
When someone needs care, there are only two ways that can happen. Either the care comes to them, or they go to the care.
What
does my loved one want?
It’s critically important to start with your loved one’s wishes whenever possible. Be cautious of making sweeping promises, but don’t hold back from active listening, showing empathy and compassion. Remember that few ever ask to be in the position of needing care.
Does the care come to them, or do they go to the care?
When someone needs care, there are only two ways that can happen. Either the care comes to them, or they go to the care. This can take a huge variety of forms — family, friends, home health, adult day healthcare, and care in facility settings. You may start one way and later switch to another, or you may find a hybrid way of providing care.
What does the frequency of care need to be?
Depending on the diagnosis or issues, care needs may change over time. A set-up that may work
perfectly well early in a diagnosis may shift dramatically a year from now. If a care situation is feeling strained, this question may need to be readdressed.
Can care continue to happen at home? AKA: the long-term care discussion.
Most people want to stay in their homes. This is a worthwhile goal, but it can’t always be the case. Thinking through the “ifs, whens, and wheres” of long-term care is a discussion worth having — preferably before the need becomes critical.
What are the resources?
This topic includes financial resources and what support systems already exist. If resources are sparse, consider Medicaid. Veterans Administration resources should be explored if the person needing care is a veteran or the spouse of a veteran. If there’s long-term care insurance, that policy should be read closely to see what it will cover and for how long.
LIFE’s ADvantage Case Management
Visit LIFEseniorservices.org and select the Services tab to learn more about ADvantage case management, or call LIFE’s SeniorLine at (918) 664-9000.
Medicaid Options for In-Home Care
A Brief Look at PACE and ADvantage Programs
There are a few Medicaid programs available to help care recipients age in place at home. Two programs in our area are especially worth exploring: the Program of All-Inclusive Care for the Elderly (PACE) and the ADvantage Medicaid Waiver Program.
For those who qualify, both programs can help keep older adults in the community by paying for adult day healthcare, case management support, home-delivered meals, assistive technology, home modifications, personal emergency response systems, and additional personal care assistance at home.
Applicants must meet a nursing facility level of care, meaning they need help with at least two activities of daily living that include bathing, dressing, eating, transferring in and out of a chair or bed, and toileting.
Financial qualifications are updated annually and can be found online at oklahoma.gov/okdhs, by calling the toll-free Medicaid Services Unit at (800) 435-4711, or by calling LIFE’s SeniorLine at (918) 664-9000, ext. 1184.
It’s highly recommended that applicants work with financial
specialists from Medicaid ADvantage and/or PACE to determine eligibility.
PACE AND MEDICAID ADvantage PROGRAMS
PACE applicants must live in the designated service area based on zip codes. LIFE PACE includes Tulsa and most of the surrounding area (check LIFEPACE.org for the specific zip codes). There are also PACE programs in Tahlequah and Oklahoma City. ADvantage is a state-wide program covering every zip code in Oklahoma. Applicants to PACE can be 55 or older, whereas ADvantage applicants must be seniors age 65 and older or younger adults with physical or other disabilities age 19 to 64.
Caregivers in a PACE service area will want to look into PACE. PACE has robust transportation services to all medical appointments and includes a full medical care team and clinic to coordinate the care of all PACE participants. PACE has three different “pathways” based on the participant’s goals — longevity, functional, and palliative care. PACE staff includes physicians, social workers, nurses, nutritionists, physical and occupational therapists, drivers, home care coordinators, and more.
If the applicant wants to keep their primary care provider, if caregivers need to be paid for providing care, or if the applicant needs an immediate transition to assisted living, the ADvantage Waiver Program may be a better fit.
Check under the Services tab at LIFEseniorservices.org for more information about ADvantage case management or call LIFE’s SeniorLine at (918) 664-9000 or toll-free at (866) 664-9009.
Is It Time to Make the Move?
When to Consider Long-Term Care
A question many caregivers face is how to know when it’s time to move a loved one to a supported living environment like assisted living or a nursing facility. This question can be hard to ask and even harder to answer.
Considering long-term care may feel like an ethical dilemma because we often want two things for our loved ones. We want them to be independent for as long as they can be, and we want them to be safe. As individuals become increasingly frail or dependent on assistance, these two goals can be in opposition. It’s like a seesaw — the more independence allowed, the more safety may be compromised. Both are worthwhile goals but can be a struggle to balance.
Another reason the question is so challenging is that the answer is often, “It depends.” Every situation is different — and yes, there are some when a move may never be required. We urge family members or caregivers to avoid promises of “never,” however. It’s impossible to know the future, and too many well-meaning caregivers are crushed by guilt because they made a promise impossible to keep.
Here
are some situations where safety
considerations may make a move to long-term care necessary.
1
The person needing care has physical limitations. In the case where someone is living alone or when available help is limited, the physical limitations of the person in need of care must be analyzed. Can they safely see to their own daily needs? Use the kitchen? Get to the bathroom at night? Climb stairs if necessary? Are they able to safely get in and out of the shower or tub unassisted?
3
The person needing care has cognitive limitations.
In the early stages of dementia, the person can often still manage daily life with minimal assistance; but as the disease progresses, safety issues can necessitate a move. There may be increased hazards of fire, falls, wandering, paranoia, or delusional thinking that put the individual at greater risk of injury, self-neglect, or becoming a victim of abuse or exploitation.
2
The caregiver has physical limitations. What are the physical limitations of the people providing care to the older adult? Can they provide the level of assistance that is needed? At some point, the physical demands — such as lifting, transferring, or assisting in case of a fall — may put both the person needing care and the caregiver at risk.
4
The caregiver is experiencing burnout.
The mental and emotional burdens of caregiving can be overwhelming. The ongoing stress and demands of the work can cause health issues for the caregiver which may greatly impact the person receiving care. There is no shame in saying, “This is too much, and I need help.”
Bonus Content
Discover long-term care options in LIFE's Vintage Guide to Housing & Services by visiting LIFEseniorservices.org and clicking on the Resources tab.
Explore LongTerm Care Options
Secure the Future for Your Loved One
When the home environment is no longer the best care environment for your loved one, it’s time to consider long-term care options.
INDEPENDENT SENIOR HOUSING
Independent living (IL) communities range from apartment complexes that offer senior-friendly amenities, to senior-only facilities that provide all-inclusive amenities like meals, activities, housekeeping, laundry, and transportation. Generally, the expectation is that seniors living in these communities can care for themselves. Costs vary with the services provided. Some IL housing options are subsidized for lowerincome seniors, but waitlists for these options can be long.
ASSISTED LIVING COMMUNITIES
Most assisted living (AL) communities are like an apartment complex but offer significant supportive services such as medication management, meals, housekeeping, linen services, as well as transportation services to help residents maintain as much independence as possible. Assisted living is primarily private pay — and for most folks, the price tag may be daunting.
Most AL communities take longterm care (LTC) insurance. For lower-income seniors, a small number of ALs are beginning to accept the ADvantage Medicaid Waiver, though be prepared for a waitlist.
Veterans may be eligible for the Aid and Attendance benefit which could help with the cost of AL. Those benefits come through the Veteran’s Benefits Administration.
Some AL facilities have a unit within their larger community for memory care or cater specifically to those who have cognitive impairment. At the minimum, this means there are locked entrances and exits, but it can mean more — potentially a much higher level of care with bathing assistance and medication management (which may or may not have an additional cost), higher staff-to-resident ratios, better training for staff in dementia care and communication, and facilities designed with dementia in mind. Find out what “memory care” means at each facility. They are not all the same.
NURSING FACILITIES
A nursing facility provides 24-hour care and services, which will include a registered nurse on staff and in the building 24 hours a day, seven days a week. The vast majority of care, however, will be provided by certified nursing aides (CNAs).
Nursing facility services include medication management, meals, housekeeping, and laundry. Some provide limited transportation. Nursing homes may provide memory care and many provide short-term rehabilitation, otherwise known as skilled nursing care. Skilled nursing care means more intensive nursing and therapy services that may be covered by Medicare for a limited number of days following hospitalization. Many nursing facilities accept Medicaid and some are contracted with the VA. Nearly all take LTC insurance. Be sure to visit several facilities before choosing one.
“I was able to take a trip with my kids –I never could have done that before.”
The Benefits of Long-Term Care What Caregivers Tell Us
Many families hope to keep a loved one in a familiar home setting, but there can be huge positives to care given in a long-term care (LTC) community.
Caregivers whose loved one has made the move to LTC can see benefits the community setting provides to them and to their family member. One caregiver shared, “I was able to take a trip with my kids — I never could have done that before.” Another recounted that she is able to feel like a wife again to her husband. “Once other people were helping with bathing him, dressing him, and feeding him, I could let go of some of my anger and just spend time with him — enjoying him again.”
Other caregivers said their loved one interacted more positively with the care staff at the facility than family
members. “I would nag and nag him to take his medication — the CNAs come along and have zero issues getting him to take it,” one said. Another caregiver, whose husband has always been very sociable, told us, “He LOVES it! He’s made so many friends, and they’re nice to him and patient with his stories.”
While many said the transition to long-term care was challenging at first, most caregivers reported that their loved one settled in. One caregiver stated she “sees the staff and other residents as an extension of my family. His roommate watches out for him and even reports back to me when any doctors or other people have been to visit him.” Another family member shared, “I know the staff and they know me — I’ve built those relationships intentionally. I want to know they are watching out for him as much as I am.”
Top Five Benefits of Long-Term Care
Here is a compilation of statements from caregivers who are now helping care for their friends and family members in a long-term care community.
1.
CONVENIENCE
From on-site dining, laundry, and cleaning services, to onsite medical services and hair salons, most caregivers are grateful to have everything under one roof, especially as traveling to appointments gets more difficult.
2.
SOCIALIZATION
LTC facilities provide built-in community and socialization that many people living alone or with one or two others lack. For many caregivers, the opportunity for community is the number one reason for moving to a facility setting — there are more people to help.
3. CONSISTENCY
Especially for individuals with dementia, the consistent daily routine and predictability of a facility setting can be comforting.
4.
PROFESSIONAL CAREGIVERS
Paid caregivers who don’t have vivid memories of who the long-term care resident once was don’t suffer from the grief and loss that family caregivers experience. Professional caregivers see the person for who they are now, and get to go home after their shift and sleep.
5.
ROLE CHANGES
Though family members continue caregiving after the transition to long-term care, the role shifts into being more of an advocate. As much of the handson care is provided by others, family members often find they can become reacquainted with former roles like daughter, son, sibling, or spouse.
Having the Hospice Conversation Understanding an
Amazing Yet Underused
Resource
Hospice is likely one of the most misunderstood and underutilized resources available to caregivers. Those who use the services consistently say how helpful the additional care was, and many wish they’d put hospice services in place earlier.
Hospice is designed to address the physical, psychological, and emotional needs of both the person who is approaching the end of life and their family. It’s fully covered by Medicare, so there is no out-of-pocket cost to the recipient. Reach out to hospice organizations to learn more.
WHEN IS IT TIME?
When the focus shifts from prolonging life to enhancing its quality, it may be time to consider hospice.
Hospice services are available to individuals with a terminal diagnosis when there is a reasonable chance they could pass in six months or less. How is that determined? Each terminal illness has specific markers that meet the criteria. A patient with late-stage Alzheimer’s disease, for example, who has sudden and dramatic weight loss and difficulties walking, swallowing,
eating, or drinking exhibits signs of the impending end of life. They may qualify for this care more easily if congestive heart failure or other complications are also present.
A doctor’s order isn’t needed to have someone evaluated for hospice, and there is no charge for an evaluation. If the patient qualifies, the hospice will often connect with the primary care physician to get the order to begin services.
WHAT DOES HOSPICE PROVIDE?
Patients benefit wherever they are located — whether that’s at home, in the hospital, or at a long-term care facility. Tulsa also has two hospice homes, Clarehouse and Porta Caeli House, which are unique, homelike environments for terminally ill individuals. Within any of these settings, care is delivered through a medical director or physician, nurses, and aides. Hospice furnishes medical equipment like hospital beds, wheelchairs, walkers, and lifts, and medical supplies like catheters, bandages, and incontinence supplies. It will also provide all medications related to the terminal illness.
The services include those of social workers and spiritual support by on-staff chaplains. Hospice provides 24-hour access to an on-call nurse or doctor to answer questions. A respite benefit covers a short stay (up to five days) in a nursing home setting, giving a break to caregivers.
LIFE’s Vintage Guide to Housing & Services publishes an updated list of hospice organizations annually. You can find a digital version of LIFE’s Vintage Guide under the Resources tab at LIFEseniorservices.org.
LIFE’s Caregiver Support Services
LIFE Senior Services offers monthly Caregiver Support Group meetings that are open to the public at four LIFE locations. Caregivers have the opportunity to meet with other caregivers who are experiencing similar situations, needs, and challenges. The one-hour meeting provides a confidential space to talk, listen, learn, and offer support to one another. Free respite care for loved ones is available during the support groups through LIFE’s Adult Day Health services. Call the Family Assistance Coordinator (FAC) at the location of your choice the week before your support group to make a reservation for your loved one.
Location Day of the Week Time
North/Pine
902 E. Pine St., Tulsa
Broken Arrow
3106 S. Juniper Ave.
Roma Berry
4821 S. 72nd E. Ave., Tulsa
Central 5950 E. 31st St., Tulsa
Second Thursday of the Month
Last Thursday of the Month
Third Tuesday of the Month 6 – 7 p.m. 1:30 – 2:30 p.m. 5:30 – 6:30 p.m.
(918) 664-9000, ext. 1323
(918) 664-9000, ext. 1500 (918) 664-9000, ext. 1471
Third Wednesday of the Month Men’s Group 2 – 3 p.m. (918) 664-9000, ext. 1137
NEW! Men’s Caregiver Support Group
We are excited to offer a new caregiver support group especially for men! This is a supportive network of men ready and willing to help others like them through shared life experiences. The group will meet the 3rd Wednesday of every month at 2:00 p.m. at LIFE’s Central location, 5950 East 31st St. For more information, call Donna Mancini, LIFE’s Caregiver Support Specialist at (918) 664-9000, ext. 1137.
LIFE’s Caregiver Counseling
LIFE also offers Caregiver Counseling for caregivers who need ongoing support. Caregivers can meet one-on-one with Donna Mancini to share their unique struggles, experiences, challenges, needs, and achievements in a safe environment. Donna is a compassionate listener, a trained counselor, and a trusted resource for caregivers. Call her today at (918) 664-9000, ext. 1137, and schedule your free appointment.
LIFE’s Vintage Guide to Housing & Services
Caregiving
LIFE’s Vintage Guide to Housing & Services is a must-have resource. This comprehensive guide lists housing options, home health, and essential community services — all in one place. From your trusted friends at LIFE Senior Services.
View LIFE’s Vintage Guide, Northeast and Central Oklahoma editions, online at LIFEseniorservices.org
CAREGIVER RESOURCES
AARP Caregiver Support (877) 333-5885 toll-free
Alzheimer’s Association
Oklahoma Chapter
6660 S. Sheridan Rd., Ste. 202 • Tulsa, OK 74133 (918) 392-5000
4-Hour Helpline: (800) 272-3900 toll-free alz.org/oklahoma
Cherokee Elder Services & Advocacy
17675 S. Muskogee Ave. • Tahlequah, OK 74464 (918) 453-5422 • cherokee.org
Elder Care of Washington County 1223 Swan Dr. • Bartlesville, OK 74006 (918) 336-8500 • (855) 336-8500 toll-free Fax: (918) 336-8519 abouteldercare.org
Caregiver support: (918) 336-8500
LIFE’s Adult Day Health
LIFE Senior Services
4821 S. 72nd E. Ave. • Tulsa, OK 74145 (918) 664-9000 • (866) 664-9009 toll-free Fax: (918) 665-0830 • LIFEseniorservices.org
LIFE’s Caregiver Support Services
LIFE Senior Services • 5950 E. 31st St. • Tulsa, OK 74135 (918) 664-9000 • (866) 664-9009 toll-free Fax: (918) 701-1019 • LIFEseniorservices.org
LIFE’s SeniorLine Information and Resource Counseling (918) 664-9000 ext. 114 • (866) 664-9009 toll-free LIFEseniorservices.org
Morton Comprehensive Health Services 1334 N. Lansing Ave. • Tulsa, OK 74106 (918) 587-2171 • Fax: (918) 587-4534
Transportation Services (918) 587-2171 mortonhealth.com
Muscogee Caregiver Support Program
5005 N. Wood Dr. • Okmulgee, OK 74447 (918) 549-2459 • muscogeenation.com
Oklahoma Healthy Aging Initiative (OHAI)
4502 E. 41st St. • Tulsa, OK 74135 (918) 660-3170 • (855) 227-5928 toll-free ohai.org
Oklahoma Respite Waiver Program
INCOG Area Agency on Aging (918) 584-7526
Caring Assistance Line: (800) 211-2116 toll-free (800) 316-2222 toll-free Fax: (918) 258-1114 • oxford-healthcare.com
Osage Nation Senior Services Program 715 Grandview Ave. • Pawhuska, OK 74056 (539) 287-9322
Oxford HealthCare
Community Care Division
2437 S. Sheridan Rd. • Tulsa, OK 74129 (918) 258-1111 • (800) 316-2222 toll-free • Fax: (918) 806-0253 • oxford-healthcare.com
Sprouts Child Care Resource Center
5840 S. Memorial Dr., Ste. 207 • Tulsa, OK 74145 (918) 699-4250 • okvetunited.org/ccrc
U.S. Department of Veterans Affairs
Caregiver Support Line (855) 260-3274 toll-free • va.gov
