Senior Transitions 101

By Amy Arp

Senior Transitions 101 is more than just a comprehensive handbook for navigating senior care options. It's also a source of support and understanding for the caregiver.

 

With clarity, compassion, a

• Language: English
• Publisher: Palmetto Publishing
• Release date: Mar 2, 2021
• ISBN: 9781649904478

Amy Arp

Amy Arp, MSW, Ph.D. is a dynamic speaker, business owner, and mother of four who resides in Austin, Texas. She graduated with honors from Texas State University with a Masters in Social Work and from Trinity College with a Doctorate in Biblical Studies. After experiencing firsthand how difficult it was for her grandmother to qualify for Medicaid, she made it her mission to guide seniors through this complex process. Amy is now the owner of Medicaid Filing Connection, a Texas-based company that offers an all-in-one solution for Medicaid eligibility and senior financial planning. Her team of attorneys, estate planners, realtors, insurance experts, and family support specialists work together to help clients protect their assets while qualifying for Medicaid. Learn more at https://www.medicaidfiling.com.

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Preface

W

hen the time came for my grandmother to move into a long-term care setting, I thought I was well equipped to help her make the transition. With my background in Social Work, I was eager to dig into the problem and research solutions. But instead of discovering clear answers, what I found was a convoluted system, gaps in care, and conflicting advice. Like many caregivers, I was overwhelmed.

Our family didn’t have any experience evaluating nursing homes, so we did our best to find a place that felt right. We were lucky to find a quality facility, but I realize now in retrospect that there were so many questions we didn’t ask because we just didn’t know enough at the time. We weren’t as lucky when it came to financing my grandmother’s care. Our first rude awakening was learning that Medicare wouldn’t cover long-term care, a common misconception. Then, we realized she didn’t qualify financially for Medicaid either. Thinking there were no other options, we began ­paying the nursing home with her private funds.

My grandmother had about $100,000 and a townhome to her name. These were assets she’d worked very hard for during her life. We slowly dwindled her cash to pay for her care. The money ran out all too soon, and we then sold her townhome. After all her assets were gone, we were informed she still didn’t qualify for Medicaid because her income was $30 over the allowable limit. Yet, it wasn’t enough to pay for her monthly bill, so my family pitched in to cover the difference.

Then, one day, I found the company I now own, Medicaid Filing Connection. With the help of a qualified Medicaid Planner, my grandmother was approved for Medicaid. I couldn’t believe no one had told me there were more options. Had I known, we could have legally saved her assets and her townhome, plus avoided paying ourselves for all those years.

When the time came for hospice care, our family ­navigated more unfamiliar territory, doing the best we could and figuring it out as we went. Fortunately, my grandmother received high-quality care, and we were able to focus on making her comfortable and surrounding her with love.

I was inspired by these personal experiences to shift my career toward helping families facing similar challenges. I’ve taken all the mistakes I learned along the way, all the hidden rules, and all the research I’ve accumulated from the years since entering this industry, and combined them into one easy-to-read book. I hope it provides clarity, comfort, and assistance in your journey.

Introduction

T

he day comes for many of us—difficult as it may be—when the loved ones who once raised or cared for us need care themselves. Role reversals and the transitions that go along with them can be upsetting for both the parents and their adult children. More than likely, aging loved ones will experience a loss of autonomy, while adult children find themselves in the uncomfortable position of attending to those they once saw as capable and independent.

We should never downplay how hard it is for seniors to release their grip on independence. How many of our elderly have achieved so much, including raising a family, earning degrees, driving 60-plus years, owning homes, succeeding in their vocation or small business, contributing to social and political causes, and more. It’s no wonder that their spirits still long to soar while their bodies or minds are waving white flags of surrender. Relatively few older adults are ready to step down their independence and relocate without a fight—and understandably so.

Despite this, as your loved one’s needs escalate, you must ask yourself if it’s more than you can handle. Realizing you’re unable to meet certain needs doesn’t mean you love your parents or elderly relatives any less. On the contrary, you still care for them deeply, and switching authoritative roles can be difficult. Grief and guilt are common reactions, and the answers aren’t easy. What’s the right decision? The best decision? What resources are available? How do you bring your loved ones on board when tough decisions have to be made?

All these questions, and many more, are the focus of this book.

It’s not an easy path, but it’s one you can manage with the right tools and support. Consider this book a map for uncharted territory, and think of me as your tour guide. While the journey with your loved one probably won’t follow the chapters of this book exactly, I’ve laid out a progression of senior care to help you understand the options available and how they fit together.

Section 1 – Preparing for Senior Care Decisions

Get organized, both mentally and physically, for the role of caregiving. I’ll talk about topics like self-care, building a caregiving team, understanding your loved one’s needs, and organizing information so you can make smart, compassionate decisions.

Section 2 – Home-Based Senior Care

The options for senior care in the home have grown exponentially in the last two decades. I’ll explain the difference between personal care and medical care, provide tips on choosing an agency, and help you determine if home-based care is right for your loved one.

Section 3 – Senior Care in a Long-Term Care Setting

Let’s dispel the myths and misconceptions about long-term care facilities. Learn what’s provided in assisted living, residential care homes, nursing homes, and skilled nursing facilities, so you know which setting is appropriate for your loved one.

Section 4 – Paying for Senior Care

Now that you have a lay of the land, let’s take a deep dive into how your loved one can pay for their care without running out of funds or preventing an inheritance. Learn about government financial assistance, public health insurance like Medicare and Medicaid, and options for leveraging private insurance and real estate. You’ll be surprised by what’s available.

Section 5 – Transitioning to a Long-Term Care Setting

There’s so much to consider when your loved one needs care in a long-term care facility or community. I’ll share tips for having that difficult conversation, finding the perfect place, easing the transition, and working with facility staff to make sure your loved one thrives in their new environment.

Section 6 – Preparing for End of Life

This is the part no one wants to discuss, but it’s respectful to think through your loved one’s wishes for end of life care. I’ll also talk about ways you can honor their memory both during a funeral service and through lasting practices that help you and your family grieve.

Like any caregiver, you’ve got a lot on your mind (and your plate). Chances are you won’t read this book in one sitting—and certainly not cover to cover. For this reason, I’ve made every effort to break things down into small, manageable pieces that are easy to understand and take action. Hopefully, it will be a resource you turn to time and again.

Section 1

Preparing for Senior Care

Decisions

L

et’s get your ducks in a row. This section focuses on getting you organized and mentally prepared for the path ahead. You’ll be ready to build a self-care plan, better understand your loved one’s needs, develop a reliable caregiving team, and plan for the future.

Chapter 1

Managing Caregiver Stress

I

n this chapter, we’ll talk about:

Assessing what you can handle

Strategies to protect your health and well-being

How to cope with negative emotions

Warning signs of caregiver burnout

Many of my clients find themselves in the sandwich generation. They’re juggling responsibilities for their children and aging parents at the same time. Joan was no different. She was tired—bone tired—but also deeply committed to her family. How could she hold down a full-time job and handle everyone’s growing needs? It was becoming an untenable situation. Something had to give.

I frequently work with families who would do anything for their loved ones. There’s no sacrifice they wouldn’t make, no task they wouldn’t complete. I’m continually inspired by these families, but at the same time, I try to help them understand a fundamental concept—you can’t pour from an empty cup. We start with self-care for a good reason. You, the caregiver, need to come first.

I know what you’re thinking, and no, it’s not selfish. Before you take any of the steps outlined in this book, you must attend to your own needs and be honest about what you can and can’t do. Otherwise, not only could there come a time when the stress of caregiving leads to poor decisions or a health crisis of your own, but it could also lead to negative consequences for your loved one. My goal is to keep either of those things from happening.

I encourage you to read this chapter and take it to heart before you dive into the rest of the book. Just remember: your needs matter too!

In times of stress, the best thing we can do for each other is to listen with our ears and hearts and to be assured that our questions are just as important as our answers. —Fred Rogers

The Pressures and Rewards of Caregiving

Caregiving is often a 24/7 job, and it can take a toll on your health. According to the CDC, While some aspects of caregiving may be rewarding, caregivers can also be at increased risk for negative health consequences. These may include stress, depression, difficulty maintaining a healthy lifestyle, and staying up to date on recommended clinical preventive services.¹

Studies show that forty to seventy percent of caregivers have clinically significant depression symptoms.² Also, in the new report Caregiving in the U.S. 2020, only forty-one percent of respondents described their health status as excellent or very good; about one in five said caregiving has made their health worse.³

However, I don’t want to paint such a dire picture of caregiving. It’s challenging, no doubt. But a study by the University of Chicago demonstrates that there’s more to understand about how caregivers view their responsibilities. The study found that eighty-three agreed with the statement caregiving has been a positive experience in my life. At the same time, fifty-one percent agreed that caregiving has caused stress in my life.⁴

How is it possible to be stressful and a positive experience at the same time? Here’s my take on the paradox.

I’ve discovered that caregivers who find meaning and purpose in their role are more resilient to challenges and setbacks. When you have a positive internal story about this stage of your life and how it’s a larger part of your personal growth, you can see everyday problems from a broader perspective. Stress doesn’t have the same impact. Talking to a friend, therapist, or religious leader can help if you’re struggling to make this mental shift.

Your attitude about caregiving is important, but there are also concrete actions you can take to reduce stress and create more control in your life. Let’s talk about that next.

When you find meaning and purpose in your caregiving role, you’ll be more resilient to the inevitable challenges and setbacks.

Set Boundaries

It may feel uncomfortable when you have a giving personality, but boundaries are key to staying healthy. It doesn’t mean you want less for your loved one. If you’re reading this book, it’s clear you want the best for them. I assure you: this is part of that process.

Ask yourself these questions to determine what you can realistically do (and what you want to do). Try to remove the shoulds in your mind and answer honestly. It’s a no-­judgment zone here. You may also want to ask close friends or family who can help you be realistic in your assessment.

Living arrangements

Would I want my loved one to live with me?

Would it be easier if my loved one lived closer?

Would I feel relieved if my loved one was in a long-term care setting?

Household assistance

Do I have the time, energy, and physical ability to help my loved one around the house?

Does this help take away from other priorities in my life?

What types of help would I prefer to provide? (laundry, but not grocery shopping, for example)

Personal care

Am I comfortable providing personal care to my loved one? (showering/toileting, for example)

What specific activities would I be comfortable handling?

How often could I assist with personal care?

Availability

Are there certain times of the day, week, month, or year that I’ll be busier?

How much time, on average, can I devote to caregiving tasks?

Is the distance between my home and my loved one eating up a lot of time?

Personality

What aspects of caregiving would be the most challenging or stressful for me?

What would make me lose patience with my loved one?

How much downtime do I need to recharge?

What would make me resentful?

By answering the questions above, you now have a better idea of what you need to thrive as a caregiver. What changes can you make? Just because you can do it, doesn’t mean you must.

I’ve talked to so many families with the absolute best of intentions. They weren’t honest in this assessment, and it ended with a family member getting hurt or worse because they tried to provide care beyond their ability. It’s okay if what’s needed is beyond what you can do.

Here’s an analogy I share with my clients. On an airplane, they instruct you to put your mask on before your child’s. This goes against every instinct I have as a mother. But I do it because it’s in their best interests. In the same way, as a caregiver, you have to put your mask on first.

Ten Strategies to Protect Your Health and Well-Being

Setting boundaries is the first step toward caregiver well-­being. But even with boundaries, caregiving is challenging. Let’s talk about what you can do to maintain your physical and mental health despite the stress of caregiving.

Exercise

This doesn’t have to mean a rigorous routine. Just a 20-minute brisk walk can ease stress, lift your mood, help you sleep, and give you a much-needed break. If you have access to a natural setting for your walk, even better. The important thing is to do it regularly and start again if you’ve gotten off track.

Eat a well-balanced diet

Don’t worry—you don’t have to be perfect. Just strive for healthier if you’re not up to a full diet overhaul. Make sure you eat breakfast, avoid processed foods, and prepare healthy food in large batches to freeze. If you’re an emotional eater, see if you could work with a nutritionist who specializes in that area. In some cases, caregiving can be so all-­consuming that you forget to eat at all. I often talk to caregivers who unintentionally have been skipping meals because of urgent responsibilities.

Get quality sleep

Try good sleep hygiene first—setting regular bedtimes and wake-ups, keeping your room dark and quiet, turning off all devices 30 minutes before bed, doing something restful like yoga or light stretching, and avoiding late-night snacks and caffeine. If you’re still struggling, talk to your doctor about supplements or medications.

See your doctor regularly

You make sure your loved one gets to all their appointments, but what about you? Even if you feel fine, don’t skip your regular check-ups. Go for annual blood work so you can prevent issues like high cholesterol or blood pressure. Get your flu shot. Talk to your doctor if you’re feeling more stressed than usual.

Stay connected with friends

As a busy caregiver, you may let friendships slide, thinking you just don’t have the time. But the more you’re isolated, the more likely you’ll get depressed. Set a date on the calendar and make arrangements so you can be there. You do it for your loved one, now do it for yourself.

Take a break

Everyone needs a vacation, even if it’s just one day. We’ll talk in the next few tips about how to make that happen. Whether it’s respite care, a family member stepping up, or a home care aide, you can’t be on all the time. That’s a recipe for burnout

Join caregiver groups

There’s great comfort in knowing you’re not alone. Plus, fellow caregivers have the best advice. They may even make you laugh when you really need it! If you can’t meet in person, there are plenty of support groups online. Check out the Resources section at the end of the book for website links.

Create a caregiving team

Caregiving is not a one-person job. Ask for help and build your team: it could include family, friends, neighbors, healthcare providers, senior groups, nonprofit organizations, or religious communities. They should be there to help with decision-making, give emotional support, and hands-on assistance. And remember—when people offer help, accept it! We’ll talk about this more in Chapter 5 (Building a Caregiving Team).

Research financial assistance

If you’re spread too thin, explore financial assistance your loved one might be eligible to receive. Don’t assume it’s not possible before you check it out. This book will cover some state and federal programs, but you should also connect with your Area Agency on Aging to see what local resources are available. We’ll also discuss ways you can preserve and extend financial resources in Chapter 13.

Learn about senior care options

There are more choices than ever for senior care. By understanding the different levels of care and what’s available in your community (for example, respite care), you can make better choices and find a balance between caring for your loved one and caring for yourself. Of course, that’s what this book is all about, so keep reading.

A pilot study published by the International Journal of Geriatric Psychiatry,⁵ found that brief daily meditation practices by family dementia caregivers can lead to improved mental and cognitive functioning and lower levels of depressive symptoms.

How to Cope with Negative Emotions

In talking with families who’ve been caring for their loved ones a long time, they often express such shame over their feelings. It’s so common. Caregiving can be a thankless job, and it can wear you down emotionally. Don’t wait for a crisis before seeking help from your friends, family, doctor, or therapist. And remember—asking for help is a sign of strength.

Let’s talk about some common feelings and suggestions for how you can cope as well as some affirmations to help positively direct your thoughts.

Guilt

Am I doing enough? Does my loved one know I feel resentful and tired? Guilt is a sign that you’re not living up to the ideal image of you. But is that image realistic? Does that image allow you to be healthy, happy, and fulfilled? Pause and mentally acknowledge all the things you’re doing for your loved one. If you were talking about someone else, would you judge them as harshly? Try to step back and look at the situation objectively. Guilt might be there for a good reason if you need to step up. But if you’re doing all you can, you shouldn’t feel guilty. Try these affirmations:

I forgive myself for not being perfect.

I release impractical expectations from myself and others.

I’m full of compassion for myself.

Anxiety

What’s the source of your anxiety? What’s rolling around in your head every night? For example, are you worried your loved one will run out of money? Are you concerned your loved one will hurt themselves overnight? See if you can plan a viable solution that would resolve the worry so you’re not ruminating. If it’s more generalized and you can’t pinpoint the cause, identify what helps you relax, such as exercise, meditation, or reading. Try these affirmations:

I’m capable of solving problems that arise.

Anxiety might make me uncomfortable, but I’m in charge of my mind and body.

I let go of what I can’t change and do my best with what I can.

Loneliness

If you’ve become isolated because of your caregiving duties, building your network and resources is the best solution. Friends and family might assume you don’t have time. Initiate contact and look for opportunities to connect. If you’re seeking a circle of people who understand you better, join the caregiving groups mentioned above. Check out Chapter 9 (Respite Care Options), so you’re not worried about your loved one when you take time for yourself. Try these affirmations:

I’m on the path to finding (or reconnecting) with my community.

Loneliness isn’t a final destination.

I attract relationships that build me up.

Anger

Anger at the situation is reasonable and healthy. You’re dealing with a constant stressor, and sometimes this is how it manifests. Often anger is masking other feelings. To calm your body and