When Should You Step In? MY STORY My father lived with his second wife until she passed away in 1998. Before his retirement, he ran a ministry in the small rural town of Lamar, Colorado, which is located two hundred miles east of Denver and has a population of eight thousand people. The church disbanded when he stopped working. After his wife's death, he lived a quiet life and fell out of touch with the people in his community. We were in frequent contact, but I didn't know anything was wrong until one day when he called me, very upset. "Carolyn, can you come help me?" he requested. Someone had run into the back of Dad's car, wrecking it, and he didn't know what to do. He needed to buy a new car and couldn't handle the insurance paperwork on his own. Though he wasn't physically injured, he was emotionally frazzled and overwhelmed. I flew out to Colorado and took charge. A few months later, I got another, similar call from Dad. He'd accidentally left a hose on, and water had flooded his basement. He needed assistance in coping with the steps of making a home-owner's insurance claim. Again, I did the paperwork for him. Before Dad moved to California to live with me, I traveled the country regularly for my job as a clinical education manager in the pharmaceutical industry. This afforded me frequent opportunities to visit him at his home in Colorado. When I discovered during one of these visits that he was losing weight, seemed depressed, and clearly was not his usual self, I knew it was time for me to become more involved. I suggested he come live with me. He didn't agree immediately. The period in which I was taking care of my father from a distance was tough on me. I didn't realize it at the time, but my role in my father's life was being transformed. Because Dad was losing weight, I brought him to see a doctor. The moment when the doctor said, "It's so good you're his caregiver," was the moment I became conscious that I was a caregiver. In 2000, after I had flown back and forth from California to Colorado for a couple of years, Dad finally agreed to move into my home. I got a call from him when I was on my way to Florida for a meeting. I instead diverted myself to Colorado to pick up Dad. He had a tiny suitcase packed and was ready to go as soon as I arrived. We flew together to California, I got him settled in my house and then I hopped on another flight to Florida. A few weeks later I flew back to Colorado once again, removed Dad's furniture and belongings, cleaned the house with the help of one of my brothers, went to see a Realtor and put Dad's house on the market. It sold six months later. Dad's transition to living in my home was complete. THE FIRST DECISION: SELECTION OF A PRIMARY CAREGIVER The typical profile of a family caregiver in our society, after a spouse, is a grown daughter in her midlife. But family caregivers may be people of any age and gender. Grown sons often fall into this role if they are the siblings in their family living closest to the parent. And, of course, only children have no siblings with whom to share the responsibility. For different reasons, children often answer the call to become caregivers. Being a primary caregiver is a huge responsibility. USlegal.com defines a caregiver as the "person who is primarily responsible for looking after someone's health, safety and comfort." When speaking about aging adults, a primary caregiver steps in only when someone cannot fully care for himself or herself. A primary caregiver may be any selected family or nonfamily member, a medical professional in a care facility or a trained professional living outside the home. For a period of time, caregiving can be offered to a loved one from a distance, while the loved one remains in place in his or her own home. After a while, the loved one's needs may increase to the point where living independently is problematic, such as when he or she begins to miss meals or falls periodically. Then other options will need to be considered, and action taken. When is the right time to make the decision to move an ailing loved one into the home of a family member or into an assisted-living environment? When he or she is no longer able to care for him- or herself and live independently. Gauging whether a move into your home is appropriate depends on the level of care the person needs and what you are capable of handling. When it is evident that the individual is at risk of harm unless he or she has twenty-four-hour help in meeting everyday needs, then home care may be the right choice. In my own situation, for instance, it was easier on me to have my elderly father living in my home than having to travel continuously to another state to care for him, as this caused less disruption in my life and for my livelihood. When an elderly parent lives with an offspring, it can give the whole family the peace of mind that comes from knowing that the parent is in a safe place with a loved one. When you choose to provide care for a loved one in your own home, it is an act of unconditional love and loyalty that money cannot buy. No amount could compensate for the hard work involved in undertaking this responsibility when the care you give is based upon the right motivations. No hired caregiver, no matter how well trained, could ever feel for your loved one as much as you do. Your family truly needs to understand the significance of selecting the right caregiver and the level of dedication that family caregiving demands. Family discussions about future options for a loved one's care should cover selecting the right caregiver and putting the legal paperwork in place that solidifies the choice, as well as devising ways to support the person who will take on the responsibility for this care (Chapter 9, Crucial Legal Conversations, goes into more detail on this topic). The selection of the caregiver should be based on the individual's qualifications and temperament, rather than on emotions. For instance, a relative who does not have a peaceful relationship with the ailing elder, who is struggling financially or who behaves irresponsibly probably should not be selected--and certainly not if there is another option available. MAKING CAREGIVING A FAMILY AFFAIR Even if one person is the primary caregiver, caregiving is accomplished more effectively when it is a team effort. Caregiving consumes time, energy and financial resources. Relatives of a primary caregiver can make the caregiver's life easier by providing emotional support, financial support and the support of being present so the caregiver can take some time off. The everyday care of your loved one should not be left entirely to the primary caregiver simply because this person lives closest or has volunteered. In some cases, relatives or others may live in another state or country, at a distance that makes it difficult for them to contribute care. If you're far away, you might make a point of visiting for a week every year so the primary caregiver can take a vacation from the duties of caregiving. In general, family caregivers are not paid to do the work. However, they often change their work schedule or even quit their job so they can be present for the ailing family member, and this can put a strain on their inances. In my own case, I eventually changed jobs, assuming the post of a sales rep in the local area and taking a sizable cut in my salary, so I could continue working and take care of my dad. Keep in mind that the person most prone to burnout in a caregiving arrangement is the primary caregiver, which is why a caregiver deserves to be rewarded with your support in any form you can give it, including inancially. In short, it is in the best interest of a family to unite to help the caregiver and the chronically ill or dying loved one. How different family members step in at such a time to offer assistance depends on the relationship dynamics of the family. Ultimately, your role in your loved one's care depends on many factors, not the least of which is your willingness to be involved, and your loved one's competence in making decisions and his or her desire for your participation. Here are some other considerations: • Is your loved one married or single? • Is your loved one's spouse capable of handling the demands of the situation? • If the care is for an aging parent, are you his or her only child or do you have siblings? • Are you and/or your siblings or other relatives capable of handling the demands of the situation? • Do you live close by? • Do you have the knowledge or training required? • Do you have the physical and emotional stamina required? • Do you have the temperament and inclination to play this role? • Do you have the financial resources required? • Do you have the availability required? • Do you get along with your loved one? • Do you get along with your loved one's spouse? • Do you and your siblings or other family members get along? Families come in all shapes and sizes. Every family has its own relationship dynamics; its own values to confer; its own capabilities to rely upon; and its own medical, financial and legal circumstances to contend with. For the purpose of this discussion of team building, I'm making two fundamental assumptions: first, you've chosen to be involved in your loved one's end-of-life planning and care, if that is needed and appropriate; and second, you have your loved one's best interests at heart. WHEN THE FAMILY STEPS IN: HOW TO WORK TOGETHER TO CARE FOR A LOVED ONE In an efort to spread the care of a loved one among several people: • Settle on a primary caregiver. One person needs to hold the legal decision-making authority for the loved one, and this role must ideally be established with documentation. It doesn't mean others cannot contribute opinions; it means only that at the end of the day there is no confusion when your family is interacting with doctors. • Divide up the tasks. If everyone takes on different responsibilities, the workload is lightened. For example, one relative could handle the medical aspects of care. Another could handle the inancial aspects of care. Yet another could handle the grocery shopping and/or meal preparation. Be sure everyone is kept informed about the current status in others' areas of responsibility, and mention changes you see in your loved one to each other. • Express your fears and concerns. Family members can be a source of emotional comfort to one another. But you have to communicate for this to happen; open up and share your thoughts and feelings. You can't expect your relatives or others to guess what's going on with your loved one, or how you're being impacted by your role as a caregiver, unless you let them into your life. • Give up trying to be in control of everything. Regrettably, you won't get much sympathy for your stress due to caretaking from others if you are in the habit of doing everything yourself and won't let anyone help you, even if they've ofered. Be willing to share the caregiver's role and understand that everyone has a personal relationship with the loved one that is uniquely theirs. • Have regular check-ins or conferences. Touch base with one another by phone on a regular basis. You can use a free computer-based phone system, such as Skype, for conference calls, or just hop on a phone bridge line, such as FreeConferenceCall.com. Or get together in person if you live close enough to one another. Staying in touch--even if nothing urgent is going on--strengthens your bonds. Use this opportunity as a time to laugh and share news about your lives, as well as information about your loved one's condition. Being in touch, whether it's on a weekly or monthly basis, is also one way to help lighten each other's emotional load. People who are isolated are more prone to depression and feelings of being overwhelmed. Just being heard and having a chance to express yourself is like a safety relief valve on a pressure boiler: it lets you blow of steam. • Make specific, clear requests. In order for any action taken to be efective, you need to know who will do what and by when, and how that action will be followed up. If you take time to assess your underlying needs and what you really want to happen before asking those involved in a loved one's caregiving to take action, you will be able to articulate your request in a clear, concise manner, one to which they can readily respond. Become aware of the diference between a request and a demand. With a request, the response may be either a yes or a no, and that's acceptable. With a demand, a no answer is usually followed by a guilt trip or a bout of rage. In other words, if you make a demand, a no is rebellion and a yes is submission. A request made of an equal in a respectful manner usually elicits more responses than a simple yes or no. In each chapter, you will find questions about specific subjects, for which answers are provided. These questions and answers will assist you in your caregiving journey. Toward the end of most chapters, I also include a Question Checklist, which summarizes the topics covered in the chapter, and ofers others for consideration, and thus provides an easy reference for you to consult. Using this question-and-answer format and a Question Checklist, we will explore in the remainder of this chapter the issues of how to help a senior maintain his or her independence, how to igure out if it is time to move an aging loved one out of his or her home, and how to determine whether you are it to be a primary caregiver. HELPING YOUR LOVED ONE LIVE INDEPENDENTLY The long-term care needs of most elderly people increase gradually over time, and so your loved one may be quite capable of living alone for a long time, with minimal help. Before seniors reach the stage where they need professional long-term care, they will likely do whatever they can to continue living alone. It's important that their home environment is as safe and as comfortable as possible, free from "booby traps" that could lead to accidents. Your loved one's home can be modified using the principles of universal design to accommodate a reduction in his or her physical ability. (See the Recommended Resources section for information on universal home design.) The following questions and answers will assist you in helping your loved one continue to live on his or her own for as long as possible. Is the lighting in your loved one's home bright enough? For someone with worsening eyesight, dim lighting can be extremely dangerous. Install bright lights throughout the home, ensuring in particular that hallways are illuminated and obstacles can be seen from a distance. Are the floor coverings in your loved one's home secure, and is the bathtub or shower safe? Remove any loose rugs or other treacherous objects on the floor, as these might lead to trips and falls. Consider installing handrails in the bathtub/shower enclosure so your loved one won't slip while bathing. Can your loved one travel between the floors of the house with ease? Many people install stair lifts to carry seniors up and down staircases and thus make all parts of a multistory home accessible. You can also consider moving your loved one to a bedroom on the first floor, if the house has one, of course, so that he or she does not have to use the stairs. Is your loved one's home accessible by wheelchair? If the senior uses a wheelchair or a scooter to get around, you can add ramps in the home to provide access to various rooms. (See the Recommended Resources section for more information on universal home design.) Excerpted from The Caregiver's Companion: Caring for Your Loved One Medically, Financially and Emotionally While Caring for Yourself by Carolyn Brent All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
