CAREGIVER SOLUTIONS A Resource Guide for Family Caregivers
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Responding to the Needs of Americans 60 and Over
Advocacy. Action. Answers on Aging. www.p4a.org Contact your local agency for assistance (See page 30). 2
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caregiver solutions 2016 Publisher
Donna K. Anderson
Vice President & Managing Editor Christianne Rupp Editor Megan Joyce Contributing Writers Bobbi Emanuel Claire Yezbak Fadden Harry Haroutunian, M.D. Lynda Hudzick William McDonald Jim Miller Sam Peeples Lisa M. Petsche
Production Coordinator Renee McWilliams Production Artists Lauren McNallen Janys Ruth
Dear Readers, As a caregiver, you have many balls in the air with work, your family, your community involvement, and the love, support, and assistance you give to your loved one. It’s hard to find time to sit and digest information. But to help make your caregiving journey just a little easier, we are happy to provide the guidance and support included in Caregiver Solutions. I know several friends who are caregivers to their parents or other loved ones, so when they tell me about some of the challenges they face, I listen very carefully. Although I’m more of a sounding board for them, I know that if they are dealing with these emotions, dilemmas, and obstacles, so are many of you. These are frequently the impetus for some of the articles included in this guide. Please make sure to check out page 19 for the Caregiver Support Programs offered. There is often more assistance and support than many caregivers realize, whether it comes from the federal, state, or local governments. Please refer to page 31 for support and information especially for caregivers. Whether it’s the support given by other children of aging parents, mental health information, assistance for medications your loved is taking, or Alzheimer’s and Parkinson’s disease information, you’ll find it there. You have a lot of questions, and many of the common ones are answered on page 26. And don’t miss the directories in the back of the guide. These are very helpful when you are looking for living and care services. Although it is not a complete list of all of the communities and care providers in our region, these organizations are reaching out and are eager to provide information and support — and most importantly, their services — to make your loving journey a little less stressful.
Account Executives Angie McComsey Jacoby Amy Kieffer Ranee Shaub Miller
Account Representative Tia Stauffer
Sales & Event Coordinator Eileen Culp
Events Manager Kimberly Shaffer
Business Manager Elizabeth Duvall
Contents 4 Life Goes On
Copyright © 2016 On-Line Publishers, Inc. All rights reserved. All listings and advertisements have been accepted for publication on the assumption that the information contained in them is true and accurate and that all merchandise or services offered in the advertisements are available to the customer according to the conditions warranted therein. The appearance of advertisements or products or services does not constitute an endorsement of the particular product or service. On-Line Publishers, Inc. disclaims any and all responsibilities and liability which may be asserted or claimed resulting from or arising out of reliance upon the information and procedures presented in this guide.
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Blood Pressure Monitor
6 Have a Plan in
Place for Medical Emergencies
Marketing Coordinator Mariah Hammacher Project Coordinator Loren Gochnauer
13 Choosing a Home 14 Polypharmacy: The
Dangers and What You Need to Know to Protect Older Adults
8 Moving Made Easier 10 Understanding
Hospice Care: What it Is and What it Isn’t
12 How to Keep Tabs
On an Elderly Parent with Video Monitoring
16 Flexibility is Key for Parkinson’s Caregivers
18 Good Reads 19 Caregiver Support
20 A Peaceful Passage 22 Home Care—One
Size Does Not Fit All
24 Money Matters 26 Frequently Asked Questions
28 Directory of Housing & Care Providers
30 Directory of
31 Support and Information
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Life Goes On By WILLIAM MCDONALD
A young man and his twin sister wrote to their mother: You were called upon. Again and again. You were asked for love at times when you, yourself, were asking for love. And you gave it. You were needed, even when you, yourself, needed. And you were there. You were asked for answers when you, yourself, were filled with questions. And you answered. You were expected to be always strong, and even as you wondered where the strength would come from, you found it. You were asked to make things better, and you didnâ€™t know how. But you did it. You were asked to hold even when you, yourself, needed to be held. And you did it. There were times you were frightened. You were alone. You had doubt and you wanted out. But only you ever knew. You have been there from the beginning. You are our mother. There is no one else like you in the world. Thank you. We love you. Life went on and a lifetime later, their mother is bedridden. Helpless. Unable to do anything. Completely dependent upon others for her care. And her children?
They will be called upon. Again and again. They will be asked for love at times when they, themselves, are asking for love. And they will give it. They will be needed, even when they, themselves, need. And they will be there. They will be asked for answers when they, themselves, are filled with questions. And they will answer. BUSINESSWoman caregiver solutions 2016 www.BusinessWomanPA.com
They will be expected to be always strong, and even as they wonder where the strength will come from, they will find it. They will be asked to make things better, and they won’t know how. But they will do it. They will be asked to hold even when they, themselves, need to be held. And they will do it. They will be frightened. Alone. They will have doubt and want out. But only they will ever know. She was there from the beginning. They will be there till the end. Because she is their mother. There is no one else like her in the world. And they love her. This was written for every caregiver everywhere. You are amazing. William McDonald Retired caregiver www.oldfriendsendlesslove.com
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Have a Plan in Place for Medical Emergencies By Lisa M. Petsche Chances are good that the relative you care for will require urgent medical attention at some point, especially if he or she has chronic health conditions. Trips to the emergency department are stressful at best and can also be frightening in some cases. Fortunately, there are numerous ways you can prepare for a medical crisis. Then, should one arise, you’ll be ready to assist your relative and the hospital staff and manage your stress in the process.
At Home – Advance Planning
Maintain a log of your relative’s medical diagnoses, past and present medications, specialists consulted, hospitalizations, and surgeries. Be ready with the following paperwork to bring to the hospital: a list of current medications, including prescription and over-the-counter drugs, vitamins, and natural remedies and the dosage; health insurance information; and a copy of your relative’s advance directives or living will and durable power of attorney. Prepare a list of relatives and friends who should be notified in an emergency. List as many phone numbers as possible—home, work, cell, vacation home—to maximize the chances you can reach these people in a hurry. Regularly review information to ensure it’s up to date. Keep the above information organized in a file folder or binder. Store it in an
easily accessible place and bring it to any hospital visits. Get a cellphone if you don’t have one, and keep it handy. Prepare an emergency kit of essential items to bring to the hospital. You may wish to include: a notebook and pen for jotting down questions to ask and recording information provided to you and your relative; a change purse with coins and small bills for parking, pay phones, and vending machines; a spare cellphone charger and a phone card with extra minutes, if applicable; reading material and a spare pair of reading glasses; and non-perishable snacks. Attach a note reminding you to bring your relative’s medical file and medications—the latter in case they’re needed in a timely fashion (as with Parkinson’s medication, for example) and not readily available from the hospital dispensary. Keep cordless home phones and cellphones charged, so they’re ready to use in a crisis.
At The Hospital
Let staff know if your relative has hearing or vision impairment, language impairment from a stroke or dementia, or a limited command of English. In the latter case, arrange for someone in the family to provide interpretation. Be prepared to share your relative’s health symptoms and medical history multiple times, with a variety of healthcare
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professionals, and exercise patience. If your relative can speak on their own behalf, allow them to do so and simply fill in any gaps. Give your full attention when medical professionals are speaking (don’t try to text family members at the same time, for example). Don’t interrupt them unless you need to correct or add crucial information. They will ask questions as they feel the need. Ensure before they leave that you are clear about any findings and next steps. Keep the volume of your voice as low as possible during conversations, for privacy reasons and because others may be trying to rest. Keep in mind, too, that even if your relative is relatively stable, or becomes stabilized, surrounding patients may be in serious medical condition.
The following are some suggestions to help you through this unsettling time. Initially, take things an hour at a time so you don’t get overwhelmed. Call, or ask staff to call, a supportive person in your social network,
By assessing needs, SCSCPA recommends services to state-funded eligible, physically disabled adults, to help them live safely and independently in their homes.
especially if you don’t cope well with crises. If no one is available, ask for a visit from the staff social worker or chaplain, depending on the circumstances and your needs. If you anticipate significant waiting periods, purchase a newspaper or magazine from the hospital gift shop. Or, if you own a personal music player, arrange for someone to deliver it to help you pass the time and manage stress. Make it easy to keep others informed by identifying a key contact person who can fan out updates from you. Encourage your relative (if able) and close family members to share in decision making. Don’t unnecessarily shoulder all of the responsibility. Look after yourself. Step away from your relative’s bedside periodically to stretch your legs, and get nourishment at regular intervals. If your relative’s stay is expected to be prolonged, arrange for family members or friends to spell you off so you can go home to rest and freshen up. If you learn your relative is being discharged home and you don’t feel prepared, ask to speak with a social worker. He or she can discuss options and share information about community supports. Lisa M. Petsche is a social worker and a freelance writer specializing in boomer and senior concerns. She has many years of experience working in healthcare teams.
State waiver-eligible participants under Act 150, Autism and OBRA, along with the newly formed Community Health Choices (CHC) Waiver – currently, the Independence and Attendant Care Waivers – will be aided by SCSCPA service coordinators to set up needed and necessary services. These services will assist participants in maintaining their goals and independence in their homes and community.
Service Coordination of South Central Pennsylvania, Inc. (SCSCPA) 141 Broadway, Suite 310 • Hanover, PA 17331
431 North 21st Street 8 a.m.–10 p.m.
Holy Spirit Carlisle Center 1211 Forge Road 8 a.m.–8 p.m.
OP E N E VE RY DAY hsh.org/UrgentCare www.BusinessWomanPA.com
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Moving Made Easier By SAM PEEPLES Changing homes can be a difficult experience, both physically and emotionally. Even simply downsizing can cost a lot in time and effort. A loved one’s departure to a care facility or different residence may leave behind a great deal of furniture or souvenirs and treasures from their life: things with no place set aside for them, but too important to sell or throw away. Managing the handling of these items can cause a large amount of unneeded stress, especially when balancing an already busy work schedule or home life. For those who cannot find the time to execute the move on their own or who don’t have friends or relatives who can assist, a relocation company can provide the experience and manpower needed while keeping a packed schedule from becoming overloaded. “The purpose of a relocation company is to work with and through one person who will facilitate, streamline, and organize all of one’s ‘to-do list,’” said Carol Thompson, 8
a representative of Armstrong Relocation & Companies, which includes Jack Treier Moving & Storage and Premier Transitions under its corporate umbrella. Expedience is the name of the game. Premier Transitions, a small company specializing in downsizing, and other companies like them offer their services helping with packing, transporting, and unpacking. They hope to provide for as many of their customers’ needs as they can, simplifying the entire process and leaving as few calls as possible between you and having your clutter packed, shipped, and unpacked. To that end, they can move almost anything that doesn’t require specialized equipment—from smaller shelf items that need to be boxed up to heavy, upright furniture, such as pianos or kitchen appliances. “Our crews at Armstrong and Treier are able to move just about any item with manpower under 900 to 1,000 pounds,” said Thompson. “Beyond that, we may need to partner with a rigging company with equipment to handle more weight,
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like large safes, or to hoist or lower items to and from different levels.” Once the goods are packed and on the trucks, the company will ship it virtually anywhere on the same continental landmass. Most relocation companies are either partnered with or have their own van lines, specialized fleets of trucks with permits to carry household goods across state lines. Not every moving company has the authority, though, so be sure to ask if they use an interstate van line if a move crosses state boundaries. If there is no specific destination in mind—if you’re waiting on a home to be built, you are still considering your options, or if you’ve downsized and there isn’t enough space for it all—then storage can be taken care of just as easily. Many relocation companies either own storage units or have partnered with warehouses. Short- or long-term storage can be arranged during the original consultation, reducing the stress of what to do with the overflow. While not a permanent solution, your items can be kept relatively secure and out of the way for anywhere from a www.BusinessWomanPA.com
couple of weeks to several years. Make sure your goods are insured while they are in storage. More often than not, it falls under your personal rental or house insurance, so don’t stop paying the premium! If the storage company says they have insurance, find out exactly what is covered and under what conditions. And if getting your home sold is a problem, there are a few companies that will go beyond simply clearing away the furniture and will actively assist with selling the house. Some relocation companies as well as private businesses will assist with staging a home, clearing out and rearranging the furniture to make the rooms more attractive to potential buyers. However, Premier Transitions goes one step further by offering to list and sell the house, promising a proposal within four to six weeks.
These services will typically have an effect on the price. How much the relocation company has to do will determine the bulk of the cost: whether or not they will be packing, how long they will have to store your goods, whether any special equipment or extra manpower is needed to move the items, and in some cases, how much the items weigh. Most companies offer free estimates based on what services are requested, allowing flexibility and a way of balancing cost with effort expended. “Price is usually within $400 to $2,000,” said Thompson, “depending on how much has to be moved, the types of pieces, access, and if packing or storage is needed.” Considering the hassle moving can be and the resulting stress that ensues, a relocation company can make itself
worth the cost several times over. When there isn’t enough time in the day or when multiple responsibilities start piling up, being able to call professionals to tackle some of the chaos can be a lifesaver. Or, as Thompson puts it: “I have heard it 1,000 times over, people ‘hate’ moving and all that’s associated with having to do it. We can help make it much less stressful and less time consuming for an individual.”
Build your caregiver circle. Many times the “best” care comes from an expanded care network and a caregiver who feels recharged and supported. Create a strong caregiver circle that supports you and your loved one’s needs. Messiah Lifeways offers more options for caregivers and the ones they love. Talk to the Messiah Lifeways Coach to learn more.
“I’m doing it for mom”
MessiahLifeways.org/CaregiverCircle 717.591.7225 | email@example.com
Support Groups | Workshops | Free Coaching | Adult Day | At Home Services | Respite� www.BusinessWomanPA.com
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Understanding Hospice Care: What it Is and What it Isn’t
I was at the medical center near my home when the administrator of my mother’s board and care introduced the word hospice to me. In her gentle way, she was getting me acquainted with the term. I had heard the word before. It was used for situations that wouldn’t have a positive outcome. Just hearing her say hospice made me afraid. She and I were in the doctor’s office with my mom. For some 10 years, my mother had suffered from Alzheimer’s disease. She was in the late stages of the disease. That’s when Mom’s doctor told us “everything that could be done medically was being done. The truth is,” the doctor said, gesturing toward my 89-year-old mother, “we are moving in the direction of comfort care.” Since that meeting, I have learned a lot about hospice care. The most important lesson is that having hospice intervention for my mom didn’t mean that I had given up on her. It meant employing a level of care designed to improve her quality of life, even at its end. It meant that I sought optimal physical and emotional comfort for her in a way that minimized her pain. In fact, due in part to the efforts of the hospice care workers during the next 16 months, my mother’s quality of life improved. I believe their care extended her life.
By CLAIRE YEZBAK FADDEN
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What is Hospice?
Hospice dates back to medieval times when travelers, the sick, wounded, or dying would seek a place for rest and comfort. Today, hospice offers a comprehensive program of care to patients and families facing a life-limiting illness. Hospice is primarily a concept of care, not a specific place of care. Hospice emphasizes palliative rather than curative treatment, quality rather than quantity of life. Its goal is to relieve and soothe the symptoms of a disease or disorder without affecting a cure.
Hospice care involves teamwork between the caregivers and the family. Working with the patient and the patient’s family, a care plan is outlined. Emotional, spiritual, and practical support are given based on the patient’s wishes and family’s needs. The hospice physician, nurses, aides, social workers, clergy, volunteers, and other professionals work together to ease the difficulties and uncertainties of the dying process.
How to Decide
At any time during a life-limiting illness, it’s appropriate to discuss all of a patient’s care options, including hospice. By law, the decision belongs to the patient. If your loved one is unable to make medical decisions, a relative or friend must have a durable power of attorney for healthcare issues to be able to authorize any medical-related services. The requirements to be hospiceappropriate include: • Th e patient must be diagnosed with a terminal illness by a physician. • Because of the illness, the patient is considered to have a life expectancy of six months or fewer, if the disease runs its normal course. • The patient must sign a statement acknowledging that they choose hospice treatment over curative treatment for their terminal illness.
• Understandably, most people are uncomfortable with the idea of stopping aggressive efforts to “beat” the disease. Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family. A patient who needs hospice care exceeding six months can remain in the program.
Is Hospice Care Covered by Insurance?
Hospice coverage is widely available. It is provided by the Medicare Hospice Benefit (under Medicare Part A, or hospital insurance) and by most private insurance providers. To be sure of coverage, check with your employer or healthinsurance provider. It covers medical services, medications, durable medical equipment, supplies, and treatments related to managing your life-limiting illness and approved as part of your individual care plan as stated above. It’s comforting to know that hospice affirms life and regards dying as a normal process. Its goal is to neither hasten nor postpone death. For more information on local hospice services, and to determine if your loved one is “hospice appropriate,” contact your healthcare provider and your insurance carrier.
Claire Yezbak Fadden, a freelance writer, is comforted by the team of hospice workers who provided comfort care for her mother.
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How to Keep Tabs On an Elderly Parent with Video Monitoring By JIM MILLER Can you recommend some good home video-monitoring devices that can help my sister and me keep an eye on our elderly mother? Over the holidays, we noticed that her health has slipped a bit and would like to keep a closer eye on her. – Worried Daughters Dear Worried, There are many great video-monitoring cameras that can help families keep a watchful eye on an elderly parent from afar, but make sure it’s OK with your mom first. Many seniors find this type of “I’m watching you” technology to be an invasion of privacy, while others don’t mind and even welcome the idea. With that said, here are some top monitoring devices for keeping tabs on your mom.
As the technology has improved and the costs have come down, video monitoring/surveillance cameras have become very popular for keeping an eye on your home, business, child, or pet (via smartphone, tablet, or computer), but they also work well for monitoring an elder loved one who lives alone. Most home video-monitoring cameras today are sleek, small, and easy to set up but do require home Wi-Fi. Although camera capabilities will vary, the best devices provide wide-view angles, HD-quality video, night vision, built-in motion and sound detection that can notify you when something is happening, and two-way audio that lets you talk and listen. And, they also offer a video-recording option (for an extra fee) that saves past video to a cloud, so you can rewind and review what you missed. One of the best products available today that does all this and
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more is the Nest Cam (www.nest.com), which costs about $199, but if you want their video-recording option, it’s an extra $100 per year for a 10-day video history or $300 per year for 30 days. Also check out the Piper NV (www.getpiper.com), which—at $279—is more expensive than the Nest Cam but allows free internet cloud storage. And the Simplicam (www.simplicam.com) is the cheapest of the three, but the video quality isn’t quite as good. They charge $150 for the camera or $200 for the camera plus 24-hour video storage for one year.
If your mom is uncomfortable with video monitoring and doesn’t want you to be able to peek in on her whenever you want, another less invasive option to consider is a “sensor” monitoring system. These systems use small wireless sensors (not cameras) placed in key areas of your mom’s home that can detect changes in her activity patterns and will notify you via text message, email, or phone call if something out of the ordinary is happening. A great company that offers this technology is Silver Mother (https://sen.se/silvermother/), which provides small sensors that you attach to commonly used household objects like her pillbox, refrigerator door, TV remote, front door, etc. So, for example, if your mom didn’t pick up her pillbox to get her medicine or didn’t open the refrigerator door to make breakfast like she usually does, or if she left the house at a peculiar time, you would be notified and could check on her. You can also check up on her any time you want online or through their mobile app. Silver Mother costs $299 for four sensors, with no ongoing monthly service fees.
Jim Miller is a contributor to the NBC Today show and author of The Savvy Senior book.
Choosing a Home Blood Pressure Monitor By JIM MILLER Can you offer me any tips on choosing a home blood pressure monitor? I just found out my mother, who lives with me, has high blood pressure, and my doctor told me I need a monitor for the house so I can keep an eye on it. – Shopping Around Dear Shopping, Almost everyone with high blood pressure or prehypertension should have a home blood pressure monitor. Home monitoring can help you keep tabs on you or your loved one’s blood pressure in a comfortable setting. Plus, if your loved one is taking medication for blood pressure, it will make certain it’s working and alert you to a health problem if it arises. Here are some tips to help you choose a good monitor.
Types of Monitors
The two most popular types of home blood pressure monitors on the market today are (electric and/or battery-powered) automatic arm monitors and automatic wrist monitors. With an automatic arm monitor, you simply wrap the cuff around your bicep and, with the push of one button, the cuff inflates and deflates automatically, giving the blood pressure reading on the display window in a matter of seconds. Wrist monitors work similarly, except they attach to the wrist. Wrist monitors are also smaller in size and a bit more comfortable to use than the arm monitors, but they tend to be a little less accurate. To help you choose the best monitor for you, here are several things you need to check into:
Extra features: Many monitors come with additional features, such as irregular heartbeat detection that checks for arrhythmias and other abnormalities; a risk-category indicator that tells you whether your blood pressure is in the high range; a data-averaging function that allows you to take multiple readings and get an overall average; multiple user memory that allows two or more users to save previous readings; and computer connections so you can download the data to your computer. Portability: If you plan to take your monitor with you while traveling, look for one with a carrying case.
Where to Shop
You can find blood pressure monitors at pharmacies, medical supply stores, or online, and you don’t need a prescription to buy one. The price typically ranges anywhere from $30 to $120 or more. Original Medicare does not pay for home blood pressure monitors unless you’re receiving dialysis at home. But if you have a Medicare Advantage plan or a private health insurance policy, it’s worth checking into as some plans may provide coverage. After you buy a monitor, it’s a good idea to take it to your doctor’s office so they can check its accuracy and teach you the proper techniques of how and when to use it.
For more information on how to measure your blood pressure accurately at home, see the American Heart Association’s tutorial “How to Monitor and Record Your Blood Pressure” at www.heart. org. Jim Miller is a contributor to the NBC Today show and author of The Savvy Senior book.
Fit: Using a cuff that’s the wrong size can result in a bad reading. Most arm models have two sizes or an adjustable cuff that fits most people. Make sure your choice fits the circumference of your upper arm. Accuracy: Check the packaging to make sure the monitor has been independently tested and validated for accuracy and reliability. You can see a list of validated monitors at dabl® Educational Trust’s website (www.dableducational.org). Ease of use: Be sure the display on the monitor is easy to read and understand and that the buttons are large enough. The directions for applying the cuff and operating the monitor should be clear. www.BusinessWomanPA.com
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Polypharmacy: The Dangers and What You Need to Know to Protect Older Adults
By HARRY HAROUTUNIAN, M.D. Drugs can be powerful agents for healing. But when taken in excess or in the wrong combination, they can be problematic and even deadly. Polypharmacy, the taking of multiple medications for coexisting conditions— such as diabetes, high blood pressure, and chronic pain—recently has become the norm for many older adults, setting the stage for adverse drug reactions that lead to unwanted symptoms and misdiagnosis of disorders as serious as dementia. According to a July 2010 report by the Office of National Drug Control Policy, an estimated 50 percent of people over age 65 are taking five or more medications per week and 12 percent more than 10 medications. When combined, many drugs and supplements can create adverse reactions, such dementia-like symptoms and balance problems that cause falls, confusion, and urinary incontinence. To make matters worse, in many instances, when the patient goes to the doctor complaining of something like loss of balance, the doctor prescribes 14
yet another drug to treat the new but (unbeknownst to the doctor) drug-induced and reversible symptom, a common phenomenon referred to as a “prescribing cascade.” Doctors aren’t always to blame. They are trained to treat the symptom. They work, for the most part, independently in a healthcare system that is not necessarily set up to monitor what other doctors at other facilities are doing for the same patient. And the older we (or our parents) get, the more likely we are to be seeing multiple specialists. Older adults, especially, trust that their healthcare providers know what’s going on and that they wouldn’t possibly prescribe something harmful. And they wouldn’t— at least not intentionally. And we haven’t even mentioned alcohol—also a drug and one that adversely interacts with almost all other drugs, including antibiotics, antidepressants, anticoagulants, antihistamines, and antidiabetic and antiseizure medications, as well as narcotic and nonnarcotic pain relievers and tranquilizers.
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Alcohol-medication interactions can be serious, as one drug infringes on the body’s metabolization of another, rendering it less effective and causing symptoms such as nausea, vomiting, headache, convulsions, hemorrhages, liver damage, a rise in blood pressure, and loss of consciousness, as well as injury and even death from overdose. In an older adult, whose metabolism has slowed, these interactions can be even more serious, as the drugs stay in the body longer. Most of the older adults I see at the Betty Ford Center come in taking five to 20 different legally prescribed drugs. Through no fault of their own, they have become victims of polypharmacy. It’s not unusual to have a nurse call me in to see what medications a patient has brought in. When I enter the room, I may see eight bottles of supplements, all of which contain potential side effects. And I may also see 12 or 15 prescription bottles, all from different physicians, all of whom failed to communicate with one another or to take the time necessary to determine what a patient is actually putting into his body every day, and then www.BusinessWomanPA.com
to calculate how the medications may interact. Mom slurring her words might not be because she’s abusing her painkillers but because she’s taking (under doctors’ orders) a number of prescription drugs that, when combined, interfere with her speech. The combination of a beta-blocker and an antispasmodic, when added to Klonopin, caused one patient to lose her balance and slur her words, giving the false impression that she was drunk or developing dementia. To find out whether an older adult’s behaviors are related to medicine, a disease, aging, dementia, or even addiction—or to prevent polypharmacy from becoming an issue—you and your doctors need information. Here are some steps you can take: 1. Establish a personal health record for your loved one, where you keep track of all medications, dosages, and reasons they were prescribed. 2. Search medicine cabinets for over-thecounter (OTC) medications, herbs, and supplements—everything from aspirin to calcium to ginkgo.
for Potentially Inappropriate Medication Use in Older Adults (lists of potentially inappropriate medications for older adults who are not receiving hospice or palliative care) is available at www. americangeriatrics.org. Review the medications your loved one is taking to ensure they are not on this list. In their findings titled “Clinical Consequences of Polypharmacy in Elderly,” researchers Robert L. Mahar
Jr., Joseph T. Hanlon, and Emily R. Hajjar reported that every year, physicians in the United States write 14 billion prescriptions, and older adults consume up to 30 percent of them. It’s no wonder that polypharmacy has become a major issue. Caregivers can help prevent dangerous conditions and outcomes by keeping track of their loved one’s medications and maintaining a healthy dialogue about all medical conditions with doctors.
Harry Haroutunian, M.D., is the author of Not As Prescribed: Recognizing and Facing Alcohol and Drug Misuse in Older Adults and serves as the physician director, Licensed Health Professionals Program at the Betty Ford Center. www.hazelden.org/bookstore
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3. Go to doctor appointments with your loved one and talk to the physician about the medications and health conditions. Show the doctor the “personal health record” you prepared so he knows what is being taken. 4. Do some research on your own. The American Geriatric Society’s Beers Criteria www.BusinessWomanPA.com
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i l b i i t y Is x e l F for Ke y
Parkinson’s Caregivers By LISA M. PETSCHE
and patients can lead active lives for some time. Disease progression tends to be more rapid in older adults. There is no cure for PD. Medications are available to alleviate certain symptoms, but their effectiveness can vary over time. In cases where medication does not work, surgery may be considered. Lifestyle modifications are an important part of any treatment plan.
Parkinson’s disease (PD) is a progressive disorder involving damage to nerve cells in the brain that control muscle movement. According to the American Parkinson Disease Association, 164 Americans are diagnosed with PD every day. Incidence increases with age, and the majority of cases develop after age 60. The main symptoms of PD are shaking (known as tremors), slow movements, rigidity, and balance problems. Other symptoms may include fatigue, excessive sweating, loss of coordination, loss of facial expression, difficulty initiating or continuing movement (“freezing”), stooped posture, shuffling gait, difficulty with handwriting, decreased speech volume, swallowing problems, sleep problems, and depression. Dementia may occur in the later stages. Although symptoms and the rate of progression vary considerably among individuals, PD usually advances slowly
If you have a loved one with PD, read on for a variety of tips for managing caregiver stress, including uncertainty about how the future will unfold.
Mental Well-Being Accept the reality of the illness and that ongoing adjustments will be required. Let go of any bitterness resulting from unrealized plans and dreams so you can move forward and channel your energy in constructive ways. Learn as much as possible about PD and
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its management and educate family and friends. The American Parkinson Disease Association at 800.223.2732 or www.apdaparkinson.org is a good resource. Accept that how your relative feels and what he or she can do may vary throughout the day, and from one day to the next, and be flexible about plans and expectations. Encourage and assist your relative to learn new ways of doing things. Concentrate on what he or she can rather than can’t do. Cultivate a focus on living in the moment and enjoying life’s many simpler pleasures. Emotional Self-Care Keep communication lines open with family members and friends in your social network. It’s important to stay connected to people who care. Recognize that you are only human. Allow yourself to experience all emotions that surface, including resentment and guilt, which are normal in care situations. Do get help immediately if you feel an urge to harm your relative or yourself. Find an outlet for expressing your thoughts and feelings—talking with a friend, keeping a journal, or attending a caregiver support group. Seek help from your primary physician or a counselor if you continually feel anxious, sad, or angry. Depression is a legitimate medical condition and is treatable. Spiritual Well-Being Set aside quiet time each day to nurture your spirituality and to help keep you grounded. Do things that center you and bring inner peace, such as meditating or getting out in nature. Pursue activities that provide you with meaning and purpose, such as writing a family history, getting a pet, or helping someone less fortunate. Just be careful not www.BusinessWomanPA.com
to take on too much. If applicable, turn to your religious faith for comfort and strength.
Practical Tips for Daily Living
Because PD is incurable, the goal, from a medical perspective, is to achieve the highest possible level of functioning and prevent or minimize complications. The following are some strategies that can help: Find a neurologist with PD expertise whom you and your relative respect and trust. Help your relative follow the management plan prescribed by the doctor and allied health professionals, which might include medication, diet changes, exercise, rest, adaptive aids, lifestyle changes, stress management techniques, and regular medical checkups. Let care providers know right away if a plan is no longer working. Encourage your relative to do as much for themselves as possible in order to maintain their abilities and independence. Help them find substitutes for enjoyable activities they can no longer engage in. If mobility issues prevent your relative from getting around in the community, help them rent or buy a scooter or wheelchair so they can go out independently or with accompaniment. Set up a record-keeping system to organize health information. Ready-made products can be found in office supply stores and bookstores. Be prepared to advocate for your relative in hospital, rehab, and other care settings to ensure they receive their Parkinson’s medications on time. This is crucial for their functioning and quality of life, yet often overlooked in institutional environments. Make home as safe as possible; for example, remove scatter mats and install handrails along stairs. Arrange for an occupational therapist to perform a home safety assessment to identify hazards and make recommendations. If accessibility is an issue, renovate or develop a plan to move before a crisis occurs. Accept offers of help and ask for www.BusinessWomanPA.com
assistance as needed. Also find out about services in your community that can help you and your relative now or in the future. The local office of aging is a good place to start.
Lisa M. Petsche is a social worker and a freelance writer who has personal and professional experience with elder care. She has a close relative living with Parkinson’s disease.
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Good Reads Don’t Give Up on Me! Supporting Aging Parents Successfully By Jan Simpson, Circle of Life Partners www.circleoflifepartners.com When life is already on overload, adult children often find that their parents need assistance. Simpson pulls us into her parents’ world to help us understand the decisions we may face as we support our parents through their last years. Sometimes hilarious, outrageous, and utterly moving, Simpson guides us through the transition from independence to death as she juggles children, work, siblings, and her parents’ needs in a riveting journey, stopping on occasion to offer advice that is practical and possible in our busy lives. Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill By Cappy Capossela Touchstone www.touchstonebooks.tumblr.com Chances are you’ll take on the role of caregiver when a family member or friend is affected by a serious illness or injury, or when you find your elderly parent needs help. As you’ll soon discover, the range of tasks and responsibilities involved are overwhelming. Share the Care offers a sensible and loving solution: a unique group approach that can turn a circle of ordinary people into a powerful caregiving team. Included here are valuable guidelines, compassionate suggestions, and a simple-to-use workbook section that together offer support to free the patient from worry and the caregivers from burnout. Mayo Clinic on Alzheimer’s Disease Mayo Clinic and Ronald Peterson Mayo Clinic www.store.mayoclinic.com The book brings you the latest, most effective treatment approaches we know and is a must-read for every caregiver. Actively managing Alzheimer’s and other conditions that cause dementia can significantly improve quality of life, both for the person with the condition and for his or her caregiver. This book is full of new discoveries we’re eager to pass on to you. For example: Mayo Clinic on Alzheimer’s 18
Disease tells you about advances in brain research that allow doctors to detect the condition in its earliest stages. This gives us hope for unraveling some of the real mysteries surrounding the disease. A critical development in medical technology is the ability to detect plaques in the living brain through molecular imaging. With this breakthrough, it’s now possible to track progress of the disease and the effects of medication therapy on a patient. Many Alzheimer’s patients can be helped by treating their coexisting conditions, such as depression, anxiety, or a sleep disorder. Often, treating these conditions results in improved general health and potentially even better cognition. You’ll learn about treatment goals, medications, strategies to deal with changing behaviors, and best ways to approach advanced or severe cases. The Caregiver’s Companion By Carolyn A. Brent Harlequin www.harlequin.com The Caregiver’s Companion contains everything you need to know to ensure that your elderly loved one is being properly cared for. People today are not only living longer, but they are also living sicker—making aging and caring for elderly loved ones more complicated than ever before. In this extensive guide, caregiver advocate Carolyn Brent outlines a step-by-step process so caregivers know what to do and what to ask in every situation that may arise, including: • Signs that your loved one needs more assistance • What to look for in a retirement home • Caretaking in your own home • How to ensure wills are in order • How to manage difficult family relationships • Ensuring you are getting the help and care you need Brent leaves no stone unturned, provides personal stories and scenarios for context, and includes other references and resources in this complete guide to caregiving. Elder Care: The Road to Growing Old Is Not Paved By Buckley Fricker, J.D., C.M.C Lulu www.lulu.com Do you know the difference between Medicare-covered nursing-home care and that
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which is covered by Medicaid? Do you confuse SSDI with SSI? Might you or someone you love need both? Are you clear about the differences between a living will and a living trust? Elder Care: The Road to Growing Old Is Not Paved is a first-of-its-kind reference manual covering the legal, financial, housing, and healthcare considerations of aging boomers themselves as well as issues confronting them as caregivers. It is also a valuable training tool for professional eldercare newcomers. From estate planning to Medicaid planning, from Social Security to Medicare, from reverse mortgages to end-of-life care, this book sets forth essential information about programs and issues affecting quality of life in later years. It is written in user-friendly, ordinary English. The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare By Marcy Cottrell Houle M.S. and Elizabeth Eckstrom, M.D., M.P.H. Taylor Trade Publishing www.rowman.com/taylortrade In a powerful blending of memoir and practical strategies from a medical doctor’s perspective, The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare reveals the hidden side of modern healthcare practices for aging Americans. This groundbreaking book, co-written by award-winning author Marcy Houle and nationally recognized geriatrician and public health advocate Elizabeth Eckstrom, M.D., M.P.H., sheds new light on aging by showing it from twin perspectives: the story of a daughter desperately seeking help for the parents she loves and a geriatrician who offers lifechanging strategies that can protect our loved ones and ourselves. Houle discovered in caring for her parents that often many of the problems are not “just old age.” Further, the real issue is not that the answers to ease suffering don’t exist. Rather, what we need to know is generally not available to the general public. Even more concerning, many healthcare professionals have had little or no training in the care of older adults. The Gift of Caring shows the best ways to advocate for our parent’s healthcare—and our own—by giving us the tools we need to insist upon the better way. www.BusinessWomanPA.com
Caregiver Support Programs There are approximately 52 million Americans serving as caregivers of older adults. Adult family caregivers caring for someone 50+ years of age number 43.5 million, and 14.9 million care for someone who has Alzheimer’s disease or other dementia. Americans are living longer, and as the population ages, the number of caregivers will also continue to rise in the coming years. Caregivers are an essential element in our healthcare system, accounting for about $450 billion worth of unpaid labor in the U.S. in 2009. Undoubtedly, that amount is even greater today. Caregiving already has become the new norm for many, as we find ourselves helping loved ones who are disabled, frail, or suffering from Alzheimer’s disease, Parkinson’s disease, and kidney and liver diseases,
Benefits & Services for Caregivers • Assessment of caregiver and care recipient needs
which have been on the rise. Daughters are more likely to provide basic care (e.g., help with dressing, feeding, and bathing), while sons are more likely to provide financial assistance. A number of studies have shown that women caregivers are more likely than men to suffer from high stress due to caregiving. The major focus of Caregiver Support Programs is to reinforce the care being given to people over the age of 60 or adults with chronic dementia. To determine what your particular needs are, both the caregiver and receiver, the package of benefits begins with an assessment. You could also take advantage of other benefits available such as counseling, education, and financial information.
Assessment Criteria (Federal and State)
Caregiver must be related to the care receiver.
• Benefits counseling on services available through local, state, and federal programs
Household income of care receiver is used to determine eligibility.
• Referrals to family support or disease-specific organizations such as Children of Aging Parents or the Alzheimer’s Disease & Related Disorders Association
Care receiver must require assistance with two or more ADLs.
Maximum amount of monthly reimbursement for caregiver expenses (depending on reimbursement rate chart) is:
Maximum amount of reimbursement for home modification/ assistive devices (depending on reimbursement rate/cost-sharing chart and availability of funding) is:
Information to caregivers includes advice on how to access: individual counseling, locations of local support groups, and caregiver training to assist caregivers in making decisions to solve problems related to their caregiving role.
Caregiver must be actively involved with various aspects of the care receiver’s care on a regular basis.
• Counseling on coping skills • Respite care • Training in caregiving skills • Home chore caregiving skills • Financial assistance to purchase supplies or services • Limited funding for assistive devices and home modifications
• Assistance in completing benefits and insurance forms
Eligibility If you are age 18 or older and the primary caregiver* of a functionally dependent person who is age 60 or older, you may be eligible for assistance. If you are age 18 or older and the primary caregiver* of a relative who is age 18 to 59 with dementia, you may be eligible for assistance. If you are age 55 or older and the primary caregiver* of a relative who is age 18 and younger or a relative age 18–59 with a severe disability who lives with you, you may be eligible for assistance. *A primary caregiver is an identified adult family member or other responsible party who has primary responsibility for the provision of care required to maintain the physical and/or mental health of the care receiver. The caregiver may not be a paid caregiver for the care receiver and must actively participate with various aspects of care on a regular — but not necessarily daily — basis. For specific program information, please contact your local Area Agency on Aging or visit the Pennsylvania Department of Aging’s website at www.aging.pa.gov. www.BusinessWomanPA.com
Caregiver must reside in the same household as care receiver.
**Unless care receiver is 18–59 years of age with dementia or other disability, or the caregiver is 55 years of age and older caring for a child 18 and younger. caregiver solutions 2016 BUSINESSWoman
A Peaceful Passage By LYNDA HUDZICK “Early on, my parents taught us that the gift of music was meant to be shared,” Cass Jendzurski, certified healthcare musician (CHM) and founder of Songs for the Journey, said. “My father was an accomplished concert pianist by the age of 19 … Sunday afternoons were always my dad at the piano. I was the oldest of five and we were ‘wired’ for music from the womb.” Coming from that kind of background, it’s no wonder that music has always been an important part of Jendzurski’s life. She recalls, at the age of 15, organizing friends to go to the Philadelphia Naval Hospital to sing and play instruments on a ward of USMC amputees from the Vietnam War. “It was a way of showing our appreciation to these young men for their honorable service,” she said. “Years later I would marry one of these brave men.” Today, she and her husband, Bob, enjoy the company of their two sons, two daughters-in-law, and five grandchildren. It was in 1999 that Jendzurski experienced, at the deathbed of a Dominican nun, a “profound calling by God,” she said. Jendzurski had been performing professionally at that point for 10 years to help with college expenses for her sons, but she was also a volunteer
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driver for the Dominican nuns of the Perpetual Rosary at the monastery on Lititz Pike. “I was also a volunteer music technician, working with their singing voices and teaching them to play instruments,” Jendzurski said. One Sunday in May, she was asked to drive two nuns to visit an aged nun who was very ill and hospitalized. “As we entered her room, I felt holiness and majesty … the likes of which I had never felt before,” Jendzurski said. “The two nuns began to sing to [the aged nun]—a practice that dates back to 12th-century monasticism: singing to the very ill or dying of their religious community.” The nuns were singing hymns that the ill sister would have sung regularly since she entered monastic life. Jendzurski joined in humming and singing. “[The ill nun] took her last breath at the very end of our songs. Her passing was so beautifully peaceful we did not even know she had died,” she said. It was a comment from a doctor during that fateful visit that was the light-bulb moment for Jendzurski, making her realize that there might be something to the practice of singing to those as they pass. “I was just walking down the hall a few minutes ago and I heard the most beautiful singing coming from this room … what a way to go,” the doctor said. It was then that she realized she had been called to take a new road, one of service to those who are dying. “Six months later, Songs for the Journey was up and running, freely ministering in song to those in Lancaster County who are actively dying,” Jendzurski said. “In the very beginning of this ministry, the idea of live music at the deathbed was somewhat ‘out of the
box,’” Jendzurski recalls. “I knew of only one group in Montana who was doing this as trained professionals.” For the most part, the healthcare facilities in the Lancaster area embraced the idea, and so Jendzurski and her colleagues were able to begin offering their volunteer services to those in need. “I find such joy when I see patients who are suffering in pain transcend in the music to a place of beauty—a place where they have mentally left their pain behind,” she said. “I have had medical staff tell me that the music provided for their patient what no medicine could.” Although she and her colleagues are there to make the journey easier for those who are dying, Jendzurski said that one of the most difficult things for her is putting aside her emotions so “I can be fully in the moment for the awareness I need to be intuitive,” she said. “No two ministries with music are ever the same. It is not a performance you have rehearsed; it is a reaction to the individual needs that are met with the music.” Faith plays an important role in her work, but it is not the goal of those serving through Songs for the Journey to share their faith with those they are serving. “My focus is in giving the gift of music,” Jendzurski said. “But God is central to our ministry. At times we may be asked or invited by the person who is dying or the family at the bedside to share our faith. We may be asked to lead in a prayer. It is only at these invitations that we then share our faith.” There is never a charge for the service she provides, although that comes as a surprise sometimes to the recipients. “I will never forget being called in to offer music to a person who was dying and whose daughters were at her side,” Jendzurski said. “As I entered the room, one of the daughters approached me to ask what the fee was
for the ministry. When I told her there was no fee, we were only there because we cared, she put her arms around me and just sobbed … that a service so beautiful would come their way with no price tag attached to it was an overwhelming thought for her at that moment.” Those working with Songs for the Journey are very likeminded, Jendzurski said. “We were all profoundly called to care for those who are dying. Each of us has a journey within our journey, so to speak, that has brought us together to service beside each other and upon the holy ground of someone’s last moments.” When asked to reflect upon what she’s learned about herself throughout her own journey, Jendzurski said she’s found that what she’s learned is more about giving to others. “If at the end there is still a little of me to give away yet, I will be happy,” Jendzurski remarked.
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Home Care One Size Does Not Fit All By BOBBI EMANUEL
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Navigating the scenarios that play out as a loved one ages is a grueling and emotional time. Many families get caught off-guard when they are hit with an unexpected diagnosis or an accident such as a fall. Life throws us into crisis mode, and the challenges and decision making must begin, sometimes very quickly. Finding care for an aging loved one can become a quick education in all things senior as there are many considerations that go into finding the best fit. Because of our aging population, there are many home care businesses popping up around the country. We are all very much the same, but at the same time very different. It can be like looking at a menu in a restaurant with too many food options. Some people end up just choosing one because the number of options is overwhelming! Knowing exactly what your loved one needs and what the priorities are will help you focus on what is important. When looking for a home care agency, history and reputation certainly speak for itself, but it is important to remember that the company you choose will have a very personal and intimate role in your family’s life. No one really knows what the length of the relationship will truly be, but in many cases it becomes a long-term connection. That connection must begin with the first phone call. If you call an agency and your first contact is an answering machine, pay attention to the time it takes to receive a return call. Depending on the circumstances, life may change very quickly and you will need an agency that will be there when you need them, no matter what day or time you call. When you do speak with the person from the agency, you should always feel that the person you are speaking with has a clear understanding of what you are
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going through. They should allow you to speak and actually hear your needs before offering up a one-size-fits-all solution. In senior care, one size does not fit all. Is there a willingness on the agency’s part to adapt and be creative with scheduling and care? Who are the people that will be caring for your loved one, how are they trained, and how will it be decided who will care for your loved one? Is there some forward thought about what the continuum of care will look like through the beginning, middle, and end? People choose to stay at home for many reasons. Will the agency you are considering be able to align with your loved one’s wishes, even if it means partnering with a hospice or home health agency for medical needs should they arise? Home care is an option that today is not typically covered by most major medical insurances or Medicare, so it can be a very large out-of-pocket expense. Will the agency work within your budget and have flexibility as your needs change through the scope of care? If you are speaking with an agency that doesn’t try to help you find solutions to deal with the financial aspect of home care, it may be difficult for them to meet your needs long term. Finally, many agencies have niches. Does the agency’s expertise meet the needs of your loved one? For instance, Senior Helpers’ services cover home helper companion services and personal care assistance, but we are also focused on dementia and Parkinson’s disease care. Our caregivers are trained in our dementia care training program, The Senior Gems. This specialized program, through a partnership with worldrenowned dementia expert Teepa Snow, focuses on what the person with dementia can do, not what they can no longer do. And a fairly recent partnership with the Michael J. Fox Foundation, along with some other strategic partners, has www.BusinessWomanPA.com
also led to the development of our focused Parkinson’s disease training program, A Matter of Balance. Every 66 seconds someone develops Alzheimer’s disease. One in every three seniors is living with Alzheimer’s disease or some form of dementia. As the baby boomer generation ages, those numbers will increase significantly. Dementia is a disease that affects the whole care team, not just the person suffering from the disease. As the brain fails, families grieve the loss of the loved one they once knew. Without proper skill training and education, navigating the behaviors that accompany each stage of dementia can be difficult and frustrating. Every day, sometimes every hour, will be different from the last. Learning techniques and activities is vital for the caregiver’s success in getting day-to-day tasks completed as well as to help make an improvement in the quality of life for the person with the disease. Though the numbers are fewer for Parkinson’s disease, PD starts out with more physical limitations before sometimes affecting cognitive abilities, and training is still vital. Understanding the importance of medication timing, task focus, exercise, and the effect the disease has on the patient’s emotional state are all pertinent to achieving a level of success and quality of life. For many seniors, the golden years are not so golden. Selecting the appropriate home care agency, at the appropriate time, can significantly reduce the tarnish that sometimes overshadows what should be the best time in a senior’s life. Finding an agency that will help to educate you through the process and that is prepared to go along on the journey will make a world of difference! Senior Helpers, independently owned and operated by Bobbi and John Emanuel, offers nonmedical in-home care to seniors, wherever “home” is. Senior Helpers specializes in dementia and Parkinson’s disease care but also offers companion and personal care services. www.seniorhelpers.com/harrisburg
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If you’ve been entrusted to assist an elderly relative with scheduling preventive exams and putting a health care plan in place, you may struggle with knowing when it’s time to take on a greater role in other aspects of their life. That’s why now is the perfect time to look for warning signs that your loved ones might be suffering from a decline in financial ability. Despite years of accumulated knowledge and experience, it is likely that at some point your loved ones’ financial capability will be challenged as they age, making it more difficult to competently handle money-related matters on their own. And this decline can occur even if 24
illnesses, such as Alzheimer’s or dementia, are not present. Establishing a plan to manage your parents’ finances is an important task in their senior years, particularly if you intend to engage other family members in the process. A survey from the National Endowment for Financial Education (NEFE) found that 86 percent of people want their family to help with financial matters if they become unable. However, nearly 7 in 10 say their family dynamics prevent that from happening. According to the survey, 58 percent of families experience disagreements, conflicts or confrontation with others when aging
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affects financial decision making. Whether you’re a child or family member who has been enlisted to help or even charting your own financial future, approaching these discussions with candor and an open mind is critical. “Especially if you’re accustomed to handling money matters privately, learning to talk more candidly about your finances may be uncomfortable,” said Ted Beck, president and CEO of NEFE. “However, allowing trusted individuals to take a closer look at your accounts can help you establish a realistic plan for the future, and help flag any potential concerns.” One way Beck recommends protecting www.BusinessWomanPA.com
Financial Warning Signs New dents, scratches, and dings on your aging parent’s car might be a sign of deteriorating driving ability. These are pretty obvious warning signs. With impaired financial decision making, the signs may not be quite as obvious, but if you know what to look for you might be able to spot it early. 1. Is the aging person taking longer to complete financial tasks? Does she struggle with everyday efforts like preparing bills for mailing, reconciling bank statements, or organizing paperwork? 2. Is the person missing key details in financial documents? Are bills piling up and has he missed a payment? Is he able to prioritize his regular responsibilities? 3. Is your aging parent experiencing problems with everyday arithmetic? Maybe you recently went out to dinner with Mom and Dad, and while paying, they took an inordinate amount of time to calculate the appropriate tip. 4. Have you noticed a decreased understanding of financial concepts with your loved ones? Are they having increased difficulty comprehending healthcare matters like deductibles, or are they having a hard time understanding the bank statements they receive? 5. Are they having new difficulty identifying investment risks? Are they able to minimize the risks in potential investments? Did they recently fall victim to fraud or a scam because they could not spot the liabilities? Pay extra attention toward looking for the warning signs of mental and financial decline. Most importantly, take the time to talk to your parents about their wishes and how you can help them.
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your parents is to allow view-only access to let loved ones help monitor for unusual activity on their banking and credit accounts. If restrictions to unauthorized users prohibit this, you can set up an alert program (via email or text) when a transaction over a set amount occurs. Also, remember to perform regular credit checks to avoid scams and identity theft. Check the three major reporting bureaus and stagger the reports to get one every four months. Additional tools and resources are available at www.smartaboutmoney.org to help ensure your loved ones’ finances stay healthy through these golden years. (Family Features) www.BusinessWomanPA.com
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Frequently Asked Questions
? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? What services are available from Pennsylvania Area Agencies on Aging? Area Agencies on Aging, countyor multi-county-based agencies that partner with the Department of Aging, provide a wide range of services, such as assessment of need, care management, inhome services, transportation, protective services, adult daycare, legal services, healthcare counseling, and senior centers. Services may vary from county to county, so it is wise to call your local Office of Aging for particular services or programs. What is the Pennsylvania Caregiver Support Program? Previously called The Family Caregiver Support Program, the Pennsylvania Caregiver Support Program’s major focus is to reinforce the care being given to people over the age of 60 or adults with chronic dementia. The package of benefits begins with an assessment to determine what benefits best meet your needs and the needs of the person receiving care. Then you will choose an option from available supportive services. Other benefits could also include counseling, education, and financial information. Is there someplace I can get help with drug bills for someone in my care? Many senior citizens with low incomes are eligible for assistance with payment for their prescribed medications through PACE/PACENET programs. Who is eligible for PACE? To be eligible for PACE, you must be 65 years of age or older and a Pennsylvania resident for at least 90 consecutive days prior to the date of application, and you cannot be enrolled in the Department of Public Welfare’s Medicaid prescription benefit. Social Security Medicare Part B premiums are now excluded from income. For a single person, your total income 26
must be $14,500 or less. For a married couple, your combined total income must be $17,700 or less. Prescriptions: co-pay for generic, $6; co-pay for single-source brand, $9.
What are some of the most important documents a caregiver should have in place? The most common legal documents that every caregiver should have are:
Who is eligible for PACENET? To be eligible for PACENET, the qualifications are the same as PACE. However, the total income for a single person can be between $14,500 and $23,500. A couple’s combined total income can be between $17,700 and $31,500. Prescriptions: co-pay for generic, $8; copay for single-source brand, $15. Monthly $40 deductible. Call your local Area on Aging office for forms or more information.
A will – It should say what your loved one wants to do with his or her property, including how and when the assets will be distributed.
What is PACE Plus Medicare? Under PACE Plus Medicare, PACE/ PACENET coverage is supplemented by federal Medicare Part D prescription coverage—offering older Pennsylvanians the best benefits of both programs. Older adults continue to receive the same prescription benefits while, in many cases, saving more money. Is there other assistance for prescription drugs if the person in your care doesn’t qualify for the above programs? If you are uninsured or underinsured, over age 18, and do not currently have Medicaid or PACE coverage, PA PAP will help you to apply for prescription assistance through various programs. For more information, call 800.955.0989. Is there a way to comparison shop for prescription drugs? On the Pennsylvania Prescription Price Finder website (www.parxpricefinder. com), a consumer can comparison shop for the best medication prices for commonly used medications. The website includes prices, pharmacy location and store hours, where to find low-cost generics, and drug education materials.
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Advanced healthcare directive – This offers the assurance that your loved one’s decisions regarding his or her future medical care will reflect their values and wishes. Durable power of attorney for healthcare – This gives you, the caregiver, the right to make healthcare decisions. It takes effect when a loved one becomes mentally incapacitated and is unable to make his/her own healthcare decisions. Your agent must act consistently with your desires as stated in the document. Durable power of attorney for finances – This allows a caregiver to manage their loved one’s finances and takes effect when a loved one becomes incapacitated and no longer able to pay the bills, file tax returns, manage investments, and make other important financial decisions. HIPAA authorization – The Health Information Portability and Accountability Act (HIPAA) keeps health information and records private. Your loved one must authorize in writing that you may receive their health information. Otherwise, their doctors aren’t obligated to share any details about their health with you, the caregiver. You will need to have a copy from each doctor’s office. Sign it at the office and then keep a copy for yourself and the person you’re caring for. Of course, the doctor’s office will also have a copy. www.BusinessWomanPA.com
? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? What is the APPRISE Program and where can I get more information? The APPRISE Program is a free program operated by the Area Agencies on Aging to provide healthinsurance counseling and assistance to Pennsylvanians age 60 and over. They can help you understand Medicare benefits by explaining Medicare, Medicare Supplemental Insurance, Medicaid, and long-term care insurance. They can explain the Medicare appeals process, help you select a Medigap insurance policy, explain the Medicare prescription Part D benefit, and explain financial assistance programs. Call 800.783.7067 or your local Area Agency on Aging for more information. The services are free of charge. I heard that communities must now be licensed as a personal care home or an assisted living residence. Is that true? Yes, that is correct. At the beginning of 2011, personal care and assisted living can no longer be interchangeable terms. Specific requirements must be met, and communities (including retirement communities and CCRCs that offer those services) must be licensed as one or the other, although they can meet requirements and be licensed for both. Do home care agencies need licenses too? Yes, home care agencies (HCAs) and home care registries (HCRs) must now be licensed by the Department of Health to provide home care services, medical and nonmedical. What is respite care? Respite care provides relief from your caregiving responsibilities on a short-term basis, which could be for a day or two or even up to a month. Care may range from personal to nursing care.
Are there services offered on a daily basis that will provide social interaction and possibly medical oversight for my loved one? Adult day services centers operate for part of a 24-hour day and offer an interactive, safe, supervised environment for older adults and adults with a dementia-related disease, Parkinson’s disease, or other organic brain syndrome. Adult day services centers offer a community-based alternative to institutionalization and provide a reliable source of support and respite for caregivers. Are there caregiving tax breaks I can take advantage of? You may be able to claim your loved one as a dependent on your tax return. With changes occurring in the healthcare laws, it is advisable to check with your tax preparer to find out what you qualify for, such as medical deductions and a dependent-care credit. What is the waiver program offered through the Pennsylvania Department of Aging? There are several waivers available through the Pennsylvania Departments of Aging for people aged 60 and older who meet the eligibility requirements and income limits. Under the program, home- and community-based long-term care services can be provided as alternatives to nursing care. Services are funded through a special waiver of certain Medicaid restrictions, allowing payments typically used for nursing-home care to be used for homecare services. The consumer is able to choose which local organization or company/agency will provide the services. All service providers are certified by the Pennsylvania Department of Public Welfare to ensure that they meet Medicaid standards.
Some services/benefits that individuals can be approved for are: • Adult daily living services (adult daycare) • Attendant care (personal care) • Community transition services (moving assistance) • Companion services (escort) • Counseling • Environmental accessibility modifications (home and/or vehicle) • Financial management services • Home health services • Home medical equipment and supplies • Meal delivery (hot or prepared) • Non-medical transportation • Personal emergency response (PER) system • Respite care services (temporary caregiver relief) What are my obligations as a caregiver? As the caregiver, you should make sure your loved one is in a safe and healthy environment, whether that is their home, your home, or a nursing home. He or she should be protected from any type of abuse—physical, mental, or financial. Some documents that you should have in place are listed on the facing page. Respite care may be offered through a local retirement community, through home care services, and through a statefunded program, such as adult daycare programs. Respite care offers you the ability to rest, relax, and regroup, confident that your loved one is in the hands of trained and qualified professionals. Are there any other online sources for additional information? Yes. Visit www.heretohelp.pa.gov. There is an abundance of information to be found at Here to Help on the PA Government Portal.
caregiver solutions 2016 BUSINESSWoman
Directory of Housing & Care Providers Asbury Home Services 5225 Wilson Lane Mechanicsburg, PA 17055
717.591.8332 firstname.lastname@example.org www.asburyhomeservices.org
We offer a customized package of personal care, companionship, and transportation services to fit your needs. Care is given with respect and dignity while maximizing independence. Serving Mechanicsburg and surrounding communities. Bethany Village 325 Wesley Drive Mechanicsburg, PA 17055
717.766.0279 email@example.com www.bethanyvillage.org
Bethany Village is a not-for-profit retirement community. Numerous residential options are available as well as assisted living, memory support, and skilled nursing services. See ad page 25
Calvary Fellowship Homes 502 Elizabeth Drive Lancaster, PA 17601
717.393.0711 firstname.lastname@example.org www.calvaryhomes.org
Calvary Fellowship Homes is a highly-rated Christian non-profit continuing care retirement community featuring residential living, personal care, memory care, skilled nursing, and therapy services. Medicaid approved.
Colonial Lodge Community 2015 North Reading Road Denver, PA 17517
717.336.5501 email@example.com www.coloniallodgepa.com
Comfort Keepers 7A North Clover Lane Harrisburg, PA 17112
717.920.9898 firstname.lastname@example.org www.comfortkeepers.com
Griswold Home Care 1926 Market Street Camp Hill, PA 17011
717.975.0540 email@example.com www.griswoldhomecare.com
Color Key For Directory of Caregiving Providers Independent Residences Personal Care Home Assisted Living Residence Dementia Units Nursing Care Community 28
Homeland Hospice 2300 Vartan Way, Suite 115 Harrisburg, PA 17110
Homeland Hospice, a community outreach of Homeland Center, provides the highest level of care and support at the end stages of life while serving as a compassionate resource for families. See ad page 11 The Campus of the Jewish Home 717.657.0700 of Greater Harrisburg firstname.lastname@example.org 4000 Linglestown Road www.jewishhomeharrisburg.org Harrisburg, PA 17112 Whatever you need — personal care, skilled nursing, or rehabilitation — it’s all here for active, independent seniors, or frail elderly of all faiths. Safe, suburban setting; professional, compassionate care. See ad page 17 Messiah Lifeways 100 Mount Allen Drive Mechanicsburg, PA 17055
717.591.7225 email@example.com www.messiahlifeways.org
Messiah Lifeways offers more options for caregivers and the ones they love, including: support groups, workshops, free coaching, adult day, at-home services, and respite. See ad page 9 Pleasant Acres Nursing & Rehab Center 717.840.7100 Elm Spring Residence firstname.lastname@example.org 118 Pleasant Acres Road www.yorkcountypa.gov York, PA 17402 Skilled nursing and rehab services for short-term rehab and longterm skilled care. Also offering hospice services, independent living units, a ventilator care unit, as well as a specialized dementia unit.
Senior Helpers 3806 Market Street, Suite 3 Camp Hill, PA 17011
Rehabilitation Facility Respite Care Adult Day Center Home Care Services Hospice Care
BUSINESSWoman caregiver solutions 2016
Griswold Home Care 717.234.4009 4815 Jonestown Road, Suite 201 email@example.com Harrisburg, PA 17109 www.griswoldhomecare.com
717.920.0707 firstname.lastname@example.org www.seniorhelpers.com/harrisburg
Non-medical personal and home helper services. Specializing in dementia care. No minimum hourly requirement. Free assessment. Caregivers are bonded and insured. Serving the greater Harrisburg and York areas. See ad page 23
Directory of Housing & Care Providers SpiriTrust Lutheran 1050 Pennsylvania Avenue York, PA 17404
717.854.3971 email@example.com www.spiritrustlutheran.org
For 60 years, SpiriTrust Lutheran has been providing seniors throughout York, Adams, and Franklin counties with homes and services designed to meet their needs. See our ad and listings for locations and contact information. See ad on the back page SpiriTrust Lutheran, The Village at Gettysburg 1075 Old Harrisburg Road Gettysburg, PA 17325 See ad on the back page
717.334.6204 firstname.lastname@example.org www.spiritrustlutheran.org
SpiriTrust Lutheran, The Village at Kelly Drive 750 Kelly Drive York, PA 17404 See ad on the back page
717.854.5010 email@example.com www.spiritrustlutheran.org
SpiriTrust Lutheran, The Village at Luther Ridge 2736 Luther Drive Chambersburg, PA 17202 See ad on the back page SpiriTrust Lutheran, The Village at Shrewsbury 800 Bollinger Drive Shrewsbury, PA 17361 See ad on the back page
SpiriTrust Lutheran, The Village at Sprenkle Drive 1802 Folkemer Circle York, PA 17404 See ad on the back page SpiriTrust Lutheran, The Village at Utz Terrace 2100 Utz Terrace Hanover, PA 17331 See ad on the back page
VIBRALife 707 Shepherdstown Road Mechanicsburg, PA 17055
717.264.5700 firstname.lastname@example.org www.spiritrustlutheran.org
717.235.5737 email@example.com www.spiritrustlutheran.org
717.764.9994 firstname.lastname@example.org www.spiritrustlutheran.org
717.637.0633 email@example.com www.spiritrustlutheran.org
717.591.2100 firstname.lastname@example.org www.vibralife.net
Enhance your life at VIBRALife. Offering a continuum of care with personal care, including memory care, skilled nursing, and rehabilitation. Call today. See ad page 15
Visiting Angels 1840 East Market Street York, PA 17402
717.751.2488 email@example.com www.visitingangels.com
Providing in-home, non-medical care to older adults in York, Lancaster, and Hanover. Specializing in dementia care for adults and their families. See ad page 22
Visiting Angels 4607 Locust Lane Harrisburg, PA 17109
717.652.8899 717.737.8899 firstname.lastname@example.org www.visitingangels.com
Care Options Home Health Care may be provided in a residential setting or as ancillary services wherever you call home. May be medical home health or non-medical services such as light housekeeping, transportation to doctor visits, shopping, respite, and more. Hospice Care is for families living and coping with a life-limiting illness. Hospice provides professional treatment of pain and symptom management with support and counseling. Respite Care provides normal care-giving opportunities on a short-term basis. May range from personal to nursing care, at home or in a care community.
Adult Day Centers offer programs in facilities or independent organizations for hourly or daily adult supervision. Nursing/Rehab Facilities offer skilled or intermediate levels of care. Intermediate Care Facilities are for individuals who can move around the facility on their own initiative, even in a wheelchair, and are not bed bound. Skilled Nursing Facilities are for patients who require 24-hour nursing supervision, many of whom are confined to bed for some portion of the day. Assisted Living Residences (ALR) are designed to provide housing and supportive services to allow residents to â€œage in place.â€? As of January 2011, licensure requirements for ALRs became effective.
Personal Care Homes offer food, shelter, and personal assistance or supervision. They are ideal for people who do not require the services of a long-term care facility but need help with transferring in and out of a bed, toileting, personal hygiene, and other activities of daily living. CCRCs are communities offering a variety of living options in addition to comprehensive medical and nursing services. Retirement Communities and 55+ Adult Communities are planned for active individuals who are able to care for their own basic needs but want to live with other 50+ mature adults.
caregiver solutions 2016 BUSINESSWoman
Directory of Ancillary Services Area Agencies on Aging Chester County Area Agency on Aging Cumberland County Aging and Community Services Dauphin County Area Agency on Aging Lancaster County Office of Aging Lebanon County Area Agency on Aging York County Area Agency on Aging See ad page 2
610.344.6350 717.240.6110 717.780.6130 717.299.7979 717.273.9262 717.771.9610 www.p4a.org
Complementary Assistance Service Coordination of South Central PA 800.223.0467 141 Broadway, Suite 310 email@example.com Hanover, PA 17331 www.scscpa.org By assessing needs, SCSCPA recommends services to statefunded eligible, physically disabled adults, to help them live safely and independently in their homes. See ad page 7
Health Holy Spirit–A Geisinger Affiliate 503 North 21st Street Camp Hill, PA 17011
Holy Spirit–A Geisinger Affiliate has a full-service hospital in Camp Hill and physician practices and services throughout the region. See ad page 7
888.837.6818 firstname.lastname@example.org www.4myaccess.com
Since 2003, specializing in all aspects of home safety — bathrooms, small space design, wet rooms, lifts, ramps, and more! Licensed and insured. PA Medicaid provider. PA LIC 3672 Amramp Serving all of Central PA See ad page 25
717.745.7267 email@example.com www.amramp.com
717.299.3726 firstname.lastname@example.org email@example.com www.n-hlaw.com
Areas of expertise include: elder law; wills, powers of attorney, living wills, and medical powers of attorney; estate settlement. Offices in Lancaster, Columbia, Quarryville, and Strasburg. 30
Offering unique ADL products with a purpose, as well as accessible bathing solutions. View our ever-expanding line of DME products. If we don’t have what you need, let us know! Caregiver promo code: CARE2016 Amramp Serving all of Central PA See ad page 25
BUSINESSWoman caregiver solutions 2016
717.745.7267 firstname.lastname@example.org www.amramp.com
Medicare AIA Medicare Solutions Center 4550 Lena Drive Mechanicsburg, PA 17055
717.591-8280, ext. 193 email@example.com www.aiaworld.com
AIA offers a complimentary service that helps you find the right Medicare plan by listening to your needs and matching you with the right plan. We offer a choice of leading Medicare plans and companies in Pennsylvania. The Central PA Women’s Insurance Group 717.885.8565 540 A Greenbriar Road firstname.lastname@example.org York, PA 17404 www.tcpwig.com
Pharmacy Stauffer’s Drug Store 149 East Main Street New Holland, PA 17557
717.355.9300 email@example.com www.rxsds.com
Pharmacy specializing in medication packaging. Managing complex medication regimens with daily bubble packaging or once-monthly cycle bottle pick-up, allowing caregivers to confidently administer medications at home. Wiley’s Pharmacy 903 Nissley Road Lancaster, PA 17601
Legal Nikolaus & Hohenadel, LLP Barbara Reist Dillon, Wanda S. Whare 212 North Queen Street Lancaster, PA 17603
844.346.2253 firstname.lastname@example.org www.ablemart.com
We help you help your clients by providing Medicare educational seminars, L.I.S. & PACE/PACENET application assistance, and special needs plan options. Call us today to schedule. We ♥ caregivers! There is no cost for our services.
Home Modifications Accessibility Solutions 360 Serving Eastern & Central PA
Ablemart.com Solutions for Independent Living
717.898.8804 email@example.com www.wileyspharmacy.com
With custom prescriptions, free delivery, and online ordering, Wiley’s is a trusted resource for caregivers and the loved ones they assist. See ad page 5
— Support and Information — AgingCare.com 239.594.3222 www.agingcare.com
Eldercare Locator 800.677.1116 www.eldercare.gov
All About Vision www.allaboutvision.org
Epilepsy Foundation of America 800.332.1000 www.epilepsy.com
Alzheimer’s Disease, Education and Referral Center 800.438.4380 www.alzheimers.org American Cancer Society Response Line 800.227.2345 www.cancer.org American Diabetes Association 800.254.9255 www.diabetes.org American Speech Language-Hearing Association 800.638.8255 www.asha.org American Urological Association 410.689.3700 or 866.746.4282 www.auanet.org Arthritis Foundation Information 800.283.7800 www.arthritis.org BenefitsCheckUp 571.527.3900 www.benefitscheckup.org
National Library Service for the Blind & Physically Handicapped 202.707.5100 www.loc.gov/nls National Parkinson Foundation, Inc. 800.473.4636 www.parkinson.org
EyeCare America 877.887.6327 www.eyecareamerica.org
Needy Meds 800.503.6897 www.needymeds.org
Family Caregiver Alliance 800.445.8106 www.caregiver.org Guide Dog Foundation for the Blind 800.548.4337 www.guidedog.org Insurance Information Institute 212.346.5500 www.cancerandcareers.org/resources Medicare 800.633.4227 www.medicare.gov
Office of Minority Health Resource Center 800.444.6472 www.minorityhealth.hhs.gov PACE/PACENET 800.225.7223 www.aging.state.pa.us/aging Pennsylvania Department of Human Services 800.692.7462 www.dhs.pa.gov Rural Information Center 800.633.7701 www.nal.usda.gov/ric
Medicare Rights 800.333.4114 www.medicarerights.org
RxAssist 401.729.3284 www.rxassist.org
Medicare Telephone Hotline 800.633.4227 www.medicare.gov National Alliance for Caregiving 301.718.8444 www.caregiving.org
Shriners Hospital for Children Referral Line 800.237.5055 www.shrinershospitalsforchildren.org
Caregiver Action Network 202.454.3970 www.caregiveraction.org
National Council on Alcoholism & Drug Dependence, Inc. 212.269.7797 www.ncadd.org
Simon Foundation for Continence 800.237.4666 www.simonfoundation.org
Caregiver Media Group 800.829.2734 www.caregiver.com
National Health Information Center 800.336.4797 www.health.gov/nhic
Christopher & Dana Reeve Foundation 800.225.0292 www.christopherreeve.org
National Institute on Aging Information Center 800.222.2225 www.nia.nih.gov
Crohn’s and Colitis Foundation of America, Inc. 800.932.2423 www.ccfa.org
National Institute of Mental Health Information Line 866.615.6464 www.nimh.nih.gov caregiver solutions 2016 BUSINESSWoman
Six conveniently located communities with a continuum of care, a spirit of service and a legacy of trust…what more could a daughter or son wish for their parents!
If you worry about your parents maintaining their home as they age, living alone, their safety or even their health, a SpiriTrust LutheranTM senior living community can give you more time to enjoy family time and less time worrying about the “what-ifs” in their future. Our communities offer a continuum of care that includes: • Maintenance-free living in one of our residential communities, • Support with daily activities in one of our personal care or assisted living neighborhoods, • Specialized care in our new Assisted Living Memory Support neighborhood, • Short-term rehabilitation or nursing care in one of our skilled care centers. Our spirit of caring has enhanced the lives of seniors and earned the trust of thousands. Come discover the SpiriTrust Lutheran difference for yourself.
Formerly LUTHERAN SOCIAL SERVICES OF SOUTH CENTRAL PENNSYLVANIA
• The Village at Gettysburg, Gettysburg • The Village at Kelly Drive, York • The Village at Luther Ridge, Chambersburg
• The Village at Shrewsbury, Shrewsbury • The Village at Sprenkle Drive, York • The Village at Utz Terrace, Hanover
Call us to learn more or schedule a personal tour.
888-404-3500 • www.SpiriTrustLutheran.org
Published on Jun 24, 2016