Introduction

For years, I wondered when I would know the time had come. The answer became crystal clear in the early morning hours of December 27, 2004. From the moment I walked into the kitchen and saw my husband standing at the sink, I knew my world was about to fall apart. Neil was highly agitated, glaring out the window, and talking to himself. His repetitive hand gestures and rapid eye movements had become a warning sign that he was not in a rational frame of mind. While there had been other situations where he was combative and angry, the atmosphere on this day was heavy and ominous. Though this was my husband standing before me, he was a stranger in our home.

Neil was suffering from Huntington’s disease, a degenerative brain disorder. For the previous 11 years, I had watched his progressive decline. It was painful to watch his loss of mental and physical capabilities and, most recently, the development of auditory and visual hallucinations.

As I cautiously approached, he began yelling and swearing that the dogs were outside, tearing up the backyard, and that I had better do something about it. He had no awareness that our three dogs were cowering behind my legs. Within a split second, he wrapped his hand around my throat and bent my small frame backward over the granite countertop. My toes barely reached the floor as his six-foot-four frame towered over me. His eyes were wild and spit showered me with every word. Willing myself not to glance to the left, where the knives lay within inches of his reach, I was terrified of this rage and believed it was possible he could kill me. I waited for the worst. . . .

Miraculously, it ended as quickly as it began. The darkness left his eyes, his face relaxed, and he released me. Kissing me good morning, he calmly walked into the family room. Shaking uncontrollably, I dropped to the floor. There was no longer any doubt—the time had come.

I was an ordinary woman with no personal or professional training, taking care of a husband losing control of his body and mind. Within three months of our wedding, I had begun a ferocious fight for his health, dignity, and quality of life. Having vowed to love, honor, and cherish this man, it was my duty to provide and care for him until his death. Naïvely, it never occurred to me that despite our love and commitment, we would not win this battle.

On that extraordinary morning, my heart, soul, and very being broke. In a moment of clarity, I realized that I needed to do what was necessary for both of us. I was crushed when faced with the decision to have my husband committed to the hospital for observation. I was even more shaken to have the doctors tell me he would never return home and that I had 48 hours to find a group home for him. Amazingly, on the worst day of my life, I would begin a journey of hope and service for others in similar situations.

After Neil’s death in April 2005, I plunged into a frenzy of activity, building two businesses that would deliver what I had so badly needed during that time: support, knowledge, and direction. Both of my companies have focused on providing families with supportive, accessible, and ethical solutions and resources for caregivers, as well as counseling, evaluations, and placement services for those seeking assisted living. Because of my firm belief that every family should know what is available to them and how to select the best care options possible, I have also regularly participated in educating people on eldercare through television and radio appearances, public seminars, as a guest lecturer for caregiver classes at local colleges, and through published articles.

When I realized that I wanted to take my expertise a step further and write a book to reach out to families providing long-term care, I reflected back on my experience with Neil. I thought about the years of visiting medical offices, attending support groups, and meeting with attorneys and financial planners. Often, we were the only two people in the waiting areas that were under the age of 65. Although there was a generational difference, our care needs were significantly similar to those seeking assistance for a beloved senior. There was no difference between me helping Neil with his daily activities and a daughter running over to her parent’s home after work to help them do laundry, cook dinner, and clean up. I understood that anybody whose loved one has dementia might also experience the controlling behaviors or violence that I had. But most of all, I could see in their faces, and now in my clients’ faces, that we all experience confusion and heartbreak when making difficult decisions regarding our loved ones. Every one of us is acting out of love and compassion, and though the focus of this book is on eldercare, the advice and guidance easily translate to caregivers of all ages and in all situations.

Why This Book?

If you’ve bought The Eldercare Consultant, you’re not reading it for entertainment. Something has happened or will soon be happening in your life, and you need help. I’m going to give you that help.

This book provides you with a clear, concise outline of the considerations you need to make and the steps you need to take in your new role as a caregiver. It offers practical advice; indispensable knowledge; and invaluable strategies, tools, and resources essential in guiding you through the various stages of caregiving. It aids you in making informed decisions regarding your loved one’s needs and in understanding when you should seek assistance. And finally, it delivers a strong message of hope and inspiration by helping you to recognize that you are not alone in your struggles.

Caregivers such as yourself won’t be the only ones who will want to have this book on hand, though. Those who come into contact with caregivers daily—be they physicians, nurses, case managers, social workers, religious or spiritual leaders, pharmacists, financial planners, or eldercare attorneys—will find it of value to their clients.

Finally, this book is not only a valuable asset to you, but it just might teach your own children how to manage your care once you require assistance!

What Information Will You Find?

In order to successfully care for your loved one, you need to address a multitude of issues that you may have not previously considered. These are the concerns that catch you off guard and throw your world into chaos. By thinking ahead, considering how you would handle each situation, and preparing for those events as much as possible, you can develop a sense of control over things you can’t prevent.

This book delivers clear and concise information on topics critical to understanding the full range of eldercare. The following chapter summaries provide a brief explanation of what you will find.

Chapter 1: Providing Eldercare for a Loved One

Eldercare isn’t only about delivering quality care to a loved one, it’s also about managing your other important relationships, such as your spouse, children, and siblings. This chapter helps you to understand how caregiving can affect these interactions and what steps you can take to nurture them. It also identifies and offers compassionate advice for the major concerns you will have in managing your loved one’s care, including safety issues, functional decline, and medication management, along with how to help your senior handle major life transitions. Finally, it helps you understand your role as caregiver and that you have choices in managing your loved one’s care.

Chapter 2: The Caregiver’s Challenges

As a caregiver, you may find yourself overwhelmed with the many responsibilities you’ve taken on. Not only will you encounter changing family roles and dynamics, but you will be required to become an expert on the legalities of caregiving, management of your loved one’s medical needs, handling their finances and the costs of care, identifying future needs, determining living arrangements, and helping your loved one cope with loss and death. This chapter addresses these issues and offers advice on how you can juggle your needs with caregiving, as well as how to recognize and prevent caregiver burnout.

Chapter 3: Easing Caregiver Concerns with Proactive Behavior

The key to successful caregiving is to anticipate needs and know how you will handle them rather than waiting for the crisis to happen. This chapter shows you how to identify the early warning signs, assess your loved one’s requirements, and know when it’s time to ask for help. It also tackles some of the more complicated issues for caregivers such as long distance caregiving, being caught between multiple generations who demand your attention, and keeping your retirement funds protected.

Chapter 4: Nurturing Your Loved One’s Mind, Body, and Spirit

Care should be all encompassing. In order to safeguard your loved one’s overall health, you will want to provide for his or her mental, physical, and spiritual well-being. This chapter helps you to recognize those needs and identify the steps you can take to ensure a well-balanced program of care.

Chapter 5: Considering Options for Care Needs

You don’t have to go it alone. There are plenty of resources that can help. Many caregivers don’t fully understand the options available to assist in providing care for their loved one. This chapter explains these possibilities, their pros and cons, and how to put that care in place, whether your desire is to provide assistance at home, hire outside help, or move a loved one to a care community.

Chapter 6: Paying for Your Loved One’s Care

The biggest obstacle for many in making eldercare decisions is the cost of care. There is a risk that you may make unnecessary or poor decisions simply because you didn’t understand the financial facts. This chapter helps you understand the costs and how to budget and pay for care. You may be surprised at the different methods and resources available.

Chapter 7: Having the Difficult Discussions

You’ve finally decided that something needs to happen, but how do you manage the emotional, and sometimes difficult, discussions with family or your loved one? This chapter offers strategies for approaching and handling conversations in order to arrive at decisions that benefit your loved one and the family as a whole.

Chapter 8: Making the Right Decision

Change is never easy, but knowing that you’ve educated yourself on options, talked with everyone involved in your loved one’s care, and have what you need to make the best decisions possible will make it less stressful. This chapter offers advice on approaching your decision, knowing when you should compromise, and deciding who makes the final decision.

Chapter 9: Special Considerations for Care

While most people associate caregiving with the elderly and picture the normal decline that happens with aging, there are circumstances where it involves unique and often very high levels of specialized care. This chapter helps you identify if your loved one falls in a category that will require greater demands from a caregiver and whether or not you are the most capable of providing that care.

Chapter 10: Final Words of Advice after Any Change

After all is said and done and you’ve put your choices into motion, there will be a period of time afterward that may make you question all your decisions. This is absolutely a normal part of the process. This chapter explains this transition period, what you should expect, and how to cope until you, your loved one, and anyone else involved in his or her care has accepted and adapted to the changes.

What Special Features Are Included in This Book?

A unique feature of The Eldercare Consultant is that, throughout each chapter, there are personal stories from those who have walked in your shoes and managed different caregiving scenarios. These stories reveal how these individuals handled challenging situations and indicate the effects their decisions had on their loved one and themselves. The stories also help identify mistakes they made and what they could have done differently. Reading these first-person narratives can give you hope and validate your feelings and emotions surrounding your role as caregiver.

Another feature of this book is a Caregiver Survival Tip, featured at the end of each chapter. These tips are directly related to the chapter topic to provide you with additional ideas and useful advice.

*****

When my late husband was diagnosed with Huntington’s disease, I was completely unprepared for how our lives would change and what would be expected of me over the years as his caregiver. I look back now and wonder at how I ever managed his increasingly high levels of care. There was no instruction book on recognizing the signs that things were changing; no mentor to cheer me on with solid, common sense advice; and no one to hold my hand and explain that whatever I was providing for him was the best I could do. I was amazed at how little guidance was offered by his medical team—especially knowing how difficult life was going to get for both of us as his condition worsened. With The Eldercare Consultant, you have the support and guidance that I wish had been offered to me.