2017
CAREGIVER SOLUTIONS
A Resource Guide for Family Caregivers Articles • Directory of Providers • Support Services • Books and Resources
Your guide to choosing the right living and care options for you or a loved one. Read it online, in print, and on mobile/tablet devices. onlinepub.com
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BUSINESSWoman CAREGIVER SOLUTIONS 2017
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CAREGIVER SOLUTIONS 2017 PUBLISHER Donna K. Anderson
EDITORIAL Vice President & Managing Editor Christianne Rupp Editor Megan Joyce Contributing Writers Kurt Kazanowski Elizabeth Landsverk, M.D. Jim Miller Gina Napoli Lisa M. Petsche Rochelle A. Shenk
ART DEPARTMENT Production Coordinator Renee McWilliams Production Artists Lauren McNallen Janys Ruth
SALES Account Executive Ranee Shaub Miller Account Representatives Matt Chesson Tia Stauffer
EVENTS MANAGER Kimberly Shaffer
ADMINISTRATION Business Manager Elizabeth Duvall
Dear Readers, As I get older, I have come to know friends who have taken on the responsibility of caregiving for a parent—sometimes both parents. I’ve also seen friends of my parents who have led an active life and now, after 50+ years of marriage, have a spouse diagnosed with dementia. They are dealing with a most difficult and life-altering stage in their life and are negotiating unfamiliar waters. In all cases, they are all looking for answers, sometimes to questions they don’t even know they have. There isn’t one place that will address all of their concerns and issues; caregiving will be an ongoing learning experience. We offer Caregiver Solutions Guide as one source of information and hope it provides insight as you progress through the journey. A concern to anyone who has a bedridden loved one is bedsores. Learn what you should be aware of so your care receiver doesn’t develop a bedsore, which could evolve into a bigger problem if it becomes infected. Have you ever wondered who could intercede for you when your loved one has medical appointments and you can’t accompany her? How do you make sure that your loved one’s medical wishes are known? Do you know some of the special approaches that can be implemented when caring for someone with dementia? This guide discusses these and many other topics as well and offers reading suggestions, answers frequently asked questions, provides information about the Caregiver Support Program (state and federal), and suggests places to go for support or more information. Remember, you may feel like you’re on the journey alone. But reach out to others and don’t be afraid to accept offers of help from friends and family. You’re doing a lot for others; don’t forget to ward off burnout by taking care of yourself. Christianne Rupp
Editor
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Marketing Coordinator Mariah Hammacher Project Coordinator Melanie Crisamore
Copyright Š 2017 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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Patient Advocates Lead Clients through Modern Healthcare Maze
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Making Your Medical Wishes Known
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Caring for Elders with Dementia
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Moving In a Senior Relative: Should You Do It? Managing Pain for Caregivers
10 Skin Breakdown
Caregiver Support Programs
Requires Special Care
20 10 Must-Ask Financial
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Questions for Your Aging Loved One
Can I Inherit My Parent’s Debt?
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All Caregivers
24 Tax Help for Caregivers of Elderly Parents
26 Frequently Asked Questions
18 Good Reads 19
22 One Size Doesn’t Fit
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28 Directory of Housing & Care Providers
30 Directory of Ancillary Services
31
Support and Information
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Patient Advocates Lead Clients through Modern Healthcare Maze By MEGAN JOYCE If you’ve ever walked out of a doctor’s office feeling frustrated, then you already understand why patient advocacy is a nascent but rapidly growing profession. Patient advocates—also referred to as health advocates or health navigators—are professionals who help their clients through the confusing swirl of medical care. From accompanying their client at a doctor’s appointment to researching treatment options to detecting possible medical-billing errors, a patient advocate’s job is to handle the stressful tangle of information and communication that bombards someone negotiating their healthcare or the care of a loved one. “Most of my clients have very complex health issues, and they may be going to several specialists,” Anne Miller, owner of Patient Advocates Lancaster, said. “Many of them feel as though they are not getting the care that they need. One doctor is not talking with the other doctor. They are ordering redundant tests and not ordering other tests, or they may not check whether medications are compatible or redundant.” Patient advocates hail from a variety of professions; many previously worked in healthcare as doctors or nurses. Such was the case with Miller, who earned her bachelor’s degree in nursing in 1990, her master’s degree in health administration in 1994, and her postgraduate certification in nursing education in 2007. Miller worked 37 years in various nursing roles before starting PAL in 2012 after being inspired by the story of her daughter’s boss, who lived in New York and hired a private advocate to oversee her mother’s nursing-home care in Florida. “She ran a business and just couldn’t manage her
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mother’s care as well, so she hired an advocate,” Miller said. “After I heard what they did, I was sold. That’s when I started Patient Advocates Lancaster.” When a patient advocate joins a client at a doctor’s appointment, for example, the patient advocate knows the right questions to ask the physician and insists on getting them answered completely, Miller said, ensuring the patient understands any unfamiliar terminology and interpreting complex medical information. “Clients go to doctors and are rushed through the appointment,” Miller continued. “They don’t remember or understand what the doctor said or they don’t know what questions to ask.” Though many healthcare organizations have their own patient navigators, those navigators work for that organization and cannot recommend another organization for care. A patient advocate, who is paid directly by the patient or their caregiver, may be aware of and can suggest alternative treatment options or clinical trials conducted elsewhere. “Private patient advocates work for the patient,” Miller said. “I can look outside of a particular system for services ... One facility may have more updated technology or may be using a certain type of procedure that another does not.” Most physicians work well with advocates, according to Miller, and “appreciate that you are pulling everything together for their patients, which helps with overall compliance and quality of care. “I am not insinuating that doctors are disconnected with their patients, but their role is changing as more hospitals buy up practices, and I don’t think physicians get the same satisfaction they once did,” Miller
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added. “Advocates help to assure that the physician’s plan is implemented with the support of another healthcare person overseeing the outcomes.” According to the Alliance of Professional Health Advocates, there are an estimated 350 privately paid professional advocates in the United States. As the country’s population continues to age—especially with the influx of aging baby boomers—the organization expects demand for patient advocates to increase dramatically as “individuals [try] to obtain care in a confusing healthcare system.” There is currently no licensing process or certification for patient advocates, but the Patient Advocate Certification Board is now developing a certification that will become the standard for patient advocacy,
according to APHA’s website. They aim to have that certification available by mid2018. After nearly four decades in nursing, Miller now enjoys being her own boss and working with all “sides” of the healthcare process: both the patients who trust her with their care and the physicians with whom she has established relationships. “Once (physicians) know that their patient has an advocate on board, they seem to really become more involved and willing to work in a collaborative relationship with the patient and with me,” Miller said. “When people are willing to pay out of pocket for someone to help them navigate their healthcare experience, their doctors know they are truly invested in the process.”
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Making Your Medical Wishes K nown
By ROCHELLE A. SHENK Thinking about potential medical issues and end-of-life care can be a bit daunting, but’s it’s important. There are also legal documents, such as an advance healthcare directive, in which one can specify one’s preferences. “It’s not just for older people; it’s important for all of us, no matter what the age, to have an advance directive. In my view, it’s part of estate planning, just like a financial power of attorney and a will,” explains David Mills, esquire, Blakey, Yost, Bupp & Rausch LLP, York. He says that an advance healthcare directive includes both a living will and a healthcare power of attorney, or POA. This comprehensive legal document provides the medical community with a clear path for treatment. When a patient is admitted for hospital care, asking if he or she has an advance medical directive is as much a part of the admissions process as providing information about healthcare insurance. A living will specifies treatments that one may want or not want to sustain life when in an end-stage medical condition or in a state of permanent unconsciousness. Treatments include dialysis, mechanical ventilation, surgery, antibiotics, chemotherapy, and radiation treatment. “This makes your wishes known in the event that you’re in the hospital and are in a coma,” stressed Mills. “The importance of
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BUSINESSWoman CAREGIVER SOLUTIONS 2017
having a living will was demonstrated by the Karen Ann Quinlan case.” Quinlan was a New Jersey woman who, in the mid-’70s, mixed an anti-anxiety medication with alcohol while on a crash diet and lapsed into a coma and then a persistent vegetative state. After doctors refused her parents’ request to disconnect her respirator—which her parents considered an extraordinary means of prolonging her life and contended that it caused her pain—they filed suit to have the apparatus removed. A legal battle ensued and eventually the respirator was removed. The family consented to a feeding tube, and she eventually died in 1985. Another clause in the living will focuses on using a feeding tube to supply food and hydration. Mills says that this clause is often called the Terri Schiavo clause—named after the landmark end-of-life care case of the 1990s. Schiavo, a Florida resident, was resuscitated after a cardiac arrest but suffered massive brain damage and was in a coma. Eventually she was diagnosed as being in a persistent vegetative state. The case pitted her husband, who wanted the feeding tube removed, against her parents, who argued that she was conscious. The legal challenges involved Florida courts, the state’s legislature, then-Gov. Jeb Bush, the U.S. Congress, President George W. Bush, and the U.S. Supreme Court.
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In the event of death, the document also includes preferences regarding organ donation. If donation is chosen, limitations about specific organs and tissues and uses for them may be included. It also addresses palliative or comfort care. Mills says that some preferences may be affected by religious beliefs. He notes that there is a form for those of the Catholic faith that allows the person to state his or her wishes in many areas but indicates that the healthcare agent is to presume in favor of providing nutrition and hydration, including medically assisted nutrition and hydration if they are capable of sustaining the person’s life. “The decisions in the living will are all very personal decisions—there’s no right or wrong. Since they often require a lot of thought, some people will take the document home and consider their decisions before finalizing it,” Mills says. Similar to a financial power of attorney, in which one appoints someone as their “agent” to act on their behalf in financial matters, the healthcare power of attorney appoints someone to act on their behalf with regard to health and personal care decisions. It is invoked if the person can no longer speak for himself or herself. It’s used not only at end of life, but also in the event that someone is unconscious or in a coma. The form allows someone to appoint both a healthcare agent and an alternate. Mills says that a living will not only specifies one’s wishes for treatment, but it also directs the agent to act either solely in accordance with the preferences as set forth in the living will or to use the preferences as guidance, allowing the healthcare agent to make the final decision. He encourages people to review the living will and their preferences with both the healthcare agent(s) they have chosen and family members. He also said that like a will, it’s a document that can be changed as one’s preferences change. Another document that some people may consider is a POLST (Pennsylvania Orders for Life-Sustaining Treatment) form. Sam Mecum, esquire, Reese Samley Wagenseller Mecum & Longer, PC, says that it has more import for physicians. “It’s a medical form rather than a legal form. It instructs doctors on the patient’s wishes regarding ‘heroic measures,’” he says. “The form itself is printed on bright-pink paper, so that it would be easily recognizable in the patient’s file.” It’s intended to give an individual control over end-of-life care and includes a directive for resuscitation or non-resuscitation if
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“It’s not just for older people; it’s important for all of us, no matter what the age, to have an advance directive.”
the individual has no pulse and is not breathing. If the patient has a pulse and/or is breathing, the form indicates if he or she wishes to have comfort measures only, limited interventions such as cardiac monitor and IV fluids, or full treatment. There are also sections to indicate the patient’s preferences regarding antibiotics and artificially administered hydration and/ or nutrition. At the time it’s completed, any existing advance healthcare directive should be reviewed. The POLST also includes contact information for the healthcare professional preparing it and the individual’s designated emergency contact or healthcare POA. A medical directive or living will applies only where the patient is in a terminal condition or an end-stage medical condition, whereas a POLST would be applicable at any time, including a time when the patient might well be successfully resuscitated. “In my opinion, the advance medical directive is way more important,” Mecum says. “I don’t really see the need to have two documents when everything in the POLST, except the DNR (Do Not Resuscitate), is covered in the advance medical directive. “The advance medical directive also allows the individual to select a healthcare power of attorney and an alternate in the event that that person would be out of town or otherwise unavailable,” Mecum says. “The advance medical directive has language that authorizes the healthcare power of attorney to act on the individual’s behalf, and the POLST form does not.” The key element with all of the documents is to ensure that an individual’s wishes for medical treatment measures, in the event they’re in a coma or facing end of life and cannot speak for themselves, are met.
CAREGIVER SOLUTIONS 2017 BUSINESSWoman
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Caring for Elders with Dementia
By ELIZABETH LANDSVERK, M.D. "DDPSEJOH UP UIF "M[IFJNFS T "TTPDJBUJPO T 'BDUT BOE Figures, someone eone in the United States EFWFMPQT EFNFOUJB FWFSZ TFDPOET NFOUJB FWFSZ TFDPOET osis is devastating The diagnosis o have the for those who disease and also ushing imposes a crushing eir burden on their families. Deciding the best way to care for a loved one with dementia is dependent on many factors, particularly the stage of the illness and, nd, of course, thee family’s ability ty to provide the necessary care. Sometimess becoming ccurs without a caregiver occurs a conscious decision. In the early mentia living at home and even stages of dementia, living independently are not only possible, but also desirable in maintaining the patient’s sense of self, and family members— usually a spouse and/or children—are able to provide the necessary care with minimal disruption to their lives. But the cognitive decline associated with Alzheimer’s and
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BUSINESSWoman CAREGIVER SOLUTIONS 2017
other forms of dementia is virtually always progressive, and family members have to come to terms with how their roles and relationships will change over time. In the first stages of caregiving, the t primary requirement is for basic information: info What are the current needs n hy for feeding and hygiene? L Medication? Legal and financial m matters? What is the best way w to com communicate? To deal with be behavioral is issues? How w the will d disease p progress? The p patient’s p primary-care ph physician can provide a gre great deal of inform information and can steer the family toward com community resources for help he with things like transpo transportation, home-delivered meals, and a local daycare programs. When routines have been established establish for everyday care, attention must be focused on how to ensure the best possible quality of life for the patient, the family, and especially for the primary caregiver. Here are some tips that will help the patient and prevent caregiving responsibilities from becoming overwhelming.
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Don’t go it alone! Caring for a loved one with dementia is often a 24/7 job with constantly changing (and increasing) responsibilities, and primary caregivers are at risk for depression and declining health themselves. Say “yes� to offers of help, even for small tasks, such as running errands or providing a meal. Make arrangements for getting a break— whether it’s just to get away for a few hours or for a short vacation. Accept help from family members, or contact community agencies that can make recommendations for respite care. Keep the patient active, to the extent that it is physically possible. Go for a walk. Enjoy the sunshine and the sounds of birds singing and children playing. Physical activity can decrease anxiety and boredom and can improve sleep. Walking and gentle exercise will also strengthen the leg muscles and help prevent falls. Help your loved one make connections. As dementia progresses, the patient increasingly loses a sense of self and of his or her place in the world. But while short-term memory often declines in the early stages of dementia, memories of long ago may be intact and accessible. One way to foster connections is to revive those memories: Look through
family photo albums, play or sing old songs, read a favorite book out loud, or watch an old movie. Foster a connection with animals. Studies have shown that animals have an instinctive ability to help us heal and that a connection with animals can help reduce stress, improve confidence, and enhance overall well-being for those affected by early-stage dementia. Arrange a visit with a cat or dog or look into a structured workshop that supports non-riding interaction with horses. Providing care for someone with dementia takes a tremendous toll on the physical and emotional health of the primary caregiver. Caregivers must take care of themselves as well as caring for their loved one. And with the dramatic growth of the elder population and the associated growth in the number of people with dementia, we must go beyond medicine to find ways to enhance the quality of life for patients and caregivers. Elizabeth Landsverk, M.D., is founder of ElderConsult Geriatric Medicine, which addresses the challenging medical and behavioral issues often facing older patients and their families. Landsverk is boardcertified in internal medicine, geriatric medicine, and palliative care, and is an adjunct clinical professor at Stanford University Medical School. Subscribe to her newsletter at www.elderconsult.com.
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CAREGIVER SOLUTIONS 2017 BUSINESSWoman
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Skin Breakdown Requires Special Care By GINA NAPOLI Whether you are caring for your loved one in your own home, or you have entrusted their care to a facility, write “skin breakdown” on your checklist of watch items. Skin is our largest organ, and for elders, it requires special care. Identifying Skin Breakdown More commonly known as “bedsores” or “pressure ulcers,” skin breakdown is an area of skin or underlying tissue, muscle, or bone that becomes damaged due to loss of blood flow. According to the National Pressure Ulcer Advisory Panel, skin breakdown is classified into four stages of progression:
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Stage 1: Skin breakdown is a reddened area on the skin that does not turn white when pressed. For darker skin, discoloration, warmth, edema, or hardness may also be indicators.
Signs of an infected pressure ulcer include foul odor, increased redness or tenderness around the area of the ulcer, or skin close to the ulcer that is warm and swollen.
Stage 2: The skin blisters or forms an open sore. The area around the sore may be red and irritated.
High Risk Because aging causes the skin to become thinner, older people are most at risk for skin breakdown. The layers of fat under aging skin disappear, lessening the amount of protection fat provides for bones poking against skin. Elderly people often lose skin elasticity, moisture, and sensation in those pressure areas. Areas where bones tend to be close to the skin are the most at-risk for skin
Stage 3: Look for a crater. You may also see damaged tissue below the skin or subcutaneous fat. Stage 4: The pressure ulcer has become so deep that there is damage to muscle and bone, and sometimes tendons and joints.
BUSINESSWoman CAREGIVER SOLUTIONS 2017
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breakdown: elbows, heels, hips, ankles, shoulders, back, and back of the head. Two-thirds of the body’s pressure points are in the pelvic area, so that area should be high on the watch list. When there is prolonged pressure on skin, the pressure reduces the flow of its nutrients and oxygen, causing damage to tissues. “People don’t realize that a root cause of skin breakdown is often a result of poor nutrition and unintended weight loss,” said Paige Bryant-Sweeder, R.D., L.D.N., a consultant dietitian for Sarah A. Todd Memorial Home. Pay particular attention to your loved one’s skin if there are other complications. Incontinence is a watch item, because long exposures to moisture can weaken skin. Chronic conditions, such as diabetes or arterial disease, can compromise blood flow, as can being unable to move body parts without assistance. Prevention “Key to preventing pressure areas is improving mobility,” said Bryant-Sweeder. “Pressure areas can develop in as little as two to six hours. Moving or repositioning frequently prevents prolonged pressure.” You can help with daily exercises and range-of-motion exercises for those who can’t move independently. Reposition and move your loved one around often. But do so carefully. Both shear and friction can damage skin. Shear occurs when a person slides down in bed or a chair. The skin remains stationary against the bed linens and the underlying tissue shifts, causing injury to capillaries. When friction occurs, the outer protective layer of the skin is rubbed away when pulled across bed linens, washcloths, or incontinence pads. When skin is exposed, bacteria can enter easily. This increases risk of infection. Applying lotion to skin is another opportunity for friction or shear. You’ll also want to be careful when bathing or performing any other physical-care
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routines. Keep clothes and bed linens dry at all times. “Good nutrition and hydration play an extremely vital role in keeping skin in good condition as we age,” said BryantSweeder. “Skin requires adequate calories, protein, and fluid to keep it in good condition.” How many calories, you ask? Enough to prevent weight loss. If your loved one has any chronic conditions, be sure to monitor carefully. For example, keep a diabetic’s blood sugar well controlled. Treatment If you find evidence of skin breakdown, Bryant-Sweeder said the first thing you should do is relieve the pressure to the affected area. Use pillows, special cushions,
and sheepskin. Then consult a physician to treat the sore. The treatment plan will depend on its stage of progression. Next, turn your focus to avoiding any further damage. Inspect the skin regularly. Keep the skin clean and dry. Keep up with regular exercise. Also, improve nutrition and any underlying problems that may impede the healing process. “The body needs calories and protein to produce new skin,” said Bryant-Sweeder. “If you aren’t consuming adequate calories and protein daily, your body cannot heal.” For more information about skin breakdown, visit the National Pressure Ulcer Advisory Panel at www.npuap.org.
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Can I Inherit My Parent’s Debt?
By JIM MILLER What happens to a person’s debt after they die? My mother has taken on a lot of medical and credit card debt over the past few years, and I’m worried that my brother and I will be responsible for it when she dies. What can you tell me? — Worried Daughter Dear Worried, In most cases when a person with debt dies, it’s their estate, not their kids, that is legally responsible. Here’s how it works. When your mom dies, her estate—which consists of the stuff she owns while she’s alive (home, car, cash, etc.)—will be responsible for paying her debts. If she doesn’t have enough cash to pay her debts, you’ll have to sell her 12
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assets and pay off her creditors with the proceeds. Whatever is left over is passed along to her heirs as dictated by the terms of her will, if she has one. If she doesn’t have a will, the intestacy laws of the state she resides in will determine how her estate will be distributed. If, however, she dies broke, or there isn’t enough money left over to pay her “unsecured debts” —credit cards, medical bills, personal loans—then her estate is declared insolvent, and her creditors will have to eat the loss. “Secured debts”—loans attached to an asset such as a house or a car—are a different story. If she has a mortgage or car loan when she dies, those monthly payments will need to be made by her estate or heirs, or the lender can seize the property. www.BusinessWomanPA.com
There are, however, a couple of exceptions that would make you legally responsible for her debt after she passes away. One is if you are a joint holder on a credit card account that she owes on. And the other is if you co-signed a loan with her. Note to spouses: These same debt-inheritance rules apply to surviving spouses too, unless you live in a community property state: Arizona, California, Idaho, Louisiana, Nevada, New Mexico, Texas, Washington, or Wisconsin. In these states, any debts that one spouse acquires after the start of a marriage belong to the other spouse too. Therefore, spouses in community property states are usually responsible for their deceased spouse’s debts. Protected Assets If your mom has any IRAs, 401(k)s, brokerage accounts, life insurance policies, or employer-based pension plans, these are assets that creditors usually cannot access. That’s because these accounts typically have designated beneficiaries, and the money goes directly to those people without passing through the estate. Settling Her Estate You also need to be aware that if your mom dies with debt and
she has no assets, settling her estate should be fairly simple. Her executor will need to send out letters to her creditors explaining the situation, including a copy of her death certificate, and that will probably take care of it. But, you and your brother may still have to deal with aggressive debt collectors who try to guilt you into paying. If your mom has some assets, but not enough to pay all her debts, her state’s probate court has a distinct list of what bills get priority. The details vary by state, but generally estate administrating fees, funeral expenses, taxes, and last illness medical bills get paid first, followed by secured debts and lastly, credit card debts. Need Help? If you have questions regarding your situation, you should consult with a consumer law attorney or probate attorney. Or, if you just need a question or two answered, call your state’s legal hotline if available (see Legalhotlines.org) or a legal services provider.
Jim Miller is a contributor to the NBC Today show and author of the Savvy Senior book.
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Moving In a Senior Relative: Should You Do It?
A Decision-Making Guide By LISA M. PETSCHE If you have a parent or other senior relative who lives alone, you may be concerned about their physical or emotional well-being, or both. Especially if they do not live close by or clearly are not managing well, you may wonder whether you should invite them to move in with you. Before making an offer, ask yourself the following questions and take time to honestly and thoroughly answer each one. Interpersonal Issues What kind of relationship do the two of you have? How do others in your
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household get along with your parent? Any personality clashes will be magnified when you are living under the same roof. Your Needs Consider your physical and mental health. Would you be able to provide hands-on assistance if needed? Could you cope with the ongoing stress involved in primary caregiving? Your Family’s Needs If there are others in your household, what do they think of your relative moving in? It’s crucial to have their support in order to make it work. Would you still have enough time to devote to them?
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Lifestyle Issues If you are employed, how might the primary caregiver role affect your work? How would it affect your social life, vacation plans, and other pursuits? Decide what adjustments you’re prepared to make. Your Relative’s Needs Determine what kind of assistance your relative requires and how much time it involves. Can they be left alone? If they’ve been diagnosed with a progressive disease, how will their needs change? Available Supports What kind of support are family members willing to provide to help make
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this work? Perhaps they could accompany your relative to appointments, have them over for dinner, or periodically take them into their home for the weekend. There are many possibilities for sharing care. What kinds of community support services are available to assist you in meeting your relative’s needs, now and in the future? Find out about accessible transportation; seniors’ recreation centers; day programs; home healthcare services that offer nursing, homemaking, and various types of therapy; and respite care programs. If you live in a different town, how easy would it be to link your relative with needed medical supports, such as a new primary physician? Finances Give thought to how household expenses would be shared. Find out, too, whether your relative has savings or insurance that would cover the cost of medical equipment or healthcare services. If not, are you able to pay for them? Home Setup Is there sufficient space in your home to meet everyone’s needs? Would your relative have separate quarters? Consider, too, your home’s accessibility. Would renovations need to be made, and if so, what is the estimated cost and who would pay it? Your Expectations What are your expectations in terms of your relative’s participation in the household? Would you want them to help in practical ways, such as preparing meals, if they are well enough? Your Relative’s Wishes and Expectations Would your relative want to move in? If so, can you anticipate their expectations in
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terms of privacy, financial arrangements, and practical help if applicable? Other Options Before making any decisions, explore alternatives: in-home services, adult daycare programs, live-in help, an assisted living facility, or a skilled nursing home. Determine whether any of these options are appropriate and affordable. Consider the least disruptive options first. The Decision If you conclude that moving your relative in with you is not feasible, help them develop a workable plan,
whether it’s arranging in-home services or finding another place to live. Provide as much support as possible. If you decide to move your relative in, allow plenty of time for everyone involved to adjust to the inevitable changes in family dynamics and household routines. Most challenges can be worked through if all parties are committed to making the arrangement work.
Lisa M. Petsche is a social worker and a freelance writer specializing in boomer and senior health matters. She has personal experience with eldercare.
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Managing Pain for Caregivers By ELIZABETH LANDSVERK, M.D. Few topics in eldercare are more contentious than managing pain, and few conditions in geriatric medicine are more difficult to identify. Elders might have the expectation that as they get older, they will have more severe aches and pains, or they may be told, “What do you expect at your age?” There is debate if a patient should even be asked if they are in pain, since the response can be so subjective. Pain symptoms that are more concrete may include increases in blood pressure or pulse, wincing, or refusal to move. Yet, pain can be serious without seeing those changes. Identification is even more complex when treating a patient living with dementia. The elder may not be able to recognize what hurts; they may just be angry and refuse to move in ways that cause pain (such as the man who just had a hip replacement and hits the therapist who tries to get him up from the chair because he was not pretreated with pain medication). Their behaviors may be misinterpreted as agitation from dementia. For any elder, it is important to ask if they are in pain and determine when it occurs, what it feels like (burning, stabbing, or ache), how long it lasts, and what relieves it. Of course, psychosocial factors can aggravate any symptom. All elders need engagement and a sense of purpose and belonging. Kind words and affection go a long way but that may not be enough. I have heard nurses and family members say, “Well, he says he has pain, but he is not grimacing, and he looks comfortable—so it’s probably just in his head.” Please don’t do that. Pain can be severe without a change in blood pressure or the specific indicators we expect. The best way to determine pain is with observation: Does the elder refuse to walk or resist repositioning? My mother suffered a hip fracture and was prescribed Fosamax to prevent osteoporosis. However, she refused to walk because of the hip pain or to eat or drink due to esophageal pain caused by the medication. She became delirious from dehydration/malnutrition. But she did much better when we gave her IV medication for osteoporosis and treated her hip pain with Norco along with the required bowel medications for any opiate use. Types of pain vary greatly, from osteoarthritis (very common) to spinal stenosis and peripheral neuropathy. Most common is arthritis pain in the hips, knees, and spine. Physical therapy and getting folks moving is the best way to address pain. For those left to just sit in a chair, which hurts less than moving, they may soon lose the ability to walk. When elders spend a day in bed, they lose 5 percent of their muscle mass. Younger adults lose only 1 percent of their muscle mass. Use it or lose it! 16
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Keep the elder moving as much as possible; go for walks in the morning and afternoon. Make moving fun with tai chi, balloon volleyball, croquet, golf putting, Wii sports, and dancing for the more adventurous! When sitting, stretch out their legs. Anyone who has trouble moving needs to have the arms and legs stretched out six times a day or more. For arthritis pain, general aches, or for elders with dementia who may be ornery and not able to identify which parts of UIFJS CPEZ BSF IVSUJOH NH PG MPOH acting acetaminophen (a.k.a., Tylenol) two or three times a day is a good first choice for relief. Daily use of medication helps prevent pain from worsening in many cases. Concern for damage to the liver is reported more common for doses of acetaminophen over 4,000 mg a day; the above dosage would be 1,950 mg a day of acetaminophen. It is important to remember that acetaminophen in all medications needs to be counted. For example, Norco has 325 mg acetaminophen in a tablet, which would be added to the daily 1,950 mg if Norco was given in addition. The use of non-steroidal antiinflammatory medications (NSAIDS, such as ibuprofen/Motrin, naproxen/Naprosyn) has been advised for use in elders to avoid opiate use. The Beers List (https://goo. gl/5ydAXL) includes all medications that may have more severe effects in elders. All the NSAIDS are on this list. With NSAIDS, the common concerns for bleeding from the stomach are joined by many serious side effects that are not recognized, including increased risk of heart attack, stroke, renal damage, hypertension, heart failure, and fluid retention. I rarely use these in the care of elders. Often, I replace the NSAID with acetaminophen, gabapentin, or Norco (in cases of more severe pain), and blood pressure decreases. Then I stop the blood www.BusinessWomanPA.com
pressure medication, and the side effects from that medication disappear as well. Gabapentin for arthritis pain is an off-label (not FDA approved) treatment that more orthopedists are using to avoid using opiates. It was originally a seizure medication and was then used for shingles (post-herpetic neuralgia) treatment. It may rarely cause drowsiness, constipation, or edema but is generally safer than ongoing use of NSAIDs and poorly managed opiates. It can also help with neuropathic pain, such as spinal arthritis, peripheral neuropathy, or sciatica. Medical interventions should be made by medical doctors, physician’s assistants, and nurse practitioners because they know the medical needs of the elder best. Managing pain, like much in medicine,
is often the result of a provider using their expertise and detective skills to figure out what the pain is and then determining the best solutions. That solution is not always the easy way or the most common way. Sometimes it’s the most creative way. Often, particularly in treating patients with dementia, the first course of action is to eliminate the pain before treating anything else.
Elizabeth Landsverk, M.D., is founder of ElderConsult Geriatric Medicine, which addresses the challenging medical and behavioral issues often facing older patients and their families. Landsverk is board-certified in internal medicine, geriatric medicine, and palliative care, and is an adjunct clinical professor at Stanford University Medical School. Sign up for her blog posts or ask questions at www.elderconsult.com.
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Good R eads Can’t We Talk about Something More Pleasant? A Memoir By Roz Chast Bloomsbury Publishing www.bloomsbury.com/us Chast brings her signature wit to the topic of aging parents. Spanning the last several years of their lives and told through four-color cartoons, family photos, documents, and a narrative as rife with laughs as it is with tears, Chast’s memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. When it came to her elderly mother and father, Chast held to the practices of denial, avoidance, and distraction. But when Elizabeth Chast climbed a ladder to locate an old souvenir from the “crazy closet”—with predictable results—the tools that had served Roz Chast well through her parents’ 70s, 80s, and into their early 90s could no longer be deployed. While the particulars are Chast-ian in their idiosyncrasies, the themes are universal: adult children accepting a parental role; aging and unstable parents leaving a family home for an institution; dealing with uncomfortable physical intimacies; managing logistics; and hiring strangers to provide the most personal care. Caregiving: Ready or Not By Charles Puchta Aging America Resources www.charlespuchta.com Caregiving: Ready or Not provides foundational information caregivers so desperately need. The journey Puchta takes the reader through in this book starts with helping the reader make sense of their situation, discovering their roles and responsibilities, exploring the aging process, and seeing life through the lens of a care receiver. Midway through the book, Puchta delves deeper into practical and purposeful caregiving and addresses discussions, decisions, and dynamics along with conflict and communication strategies. He then wraps things up by addressing loss and grieving, sharing end-of-life considerations, and ideas to help ensure lasting memories. These are all topics caregivers need to know and understand, as doing so will help them engage in more meaningful and supportive ways. 18
Survival of the Caregiver: A Treasury of ABC Self-Help Words that Give Encouragement and Support to the Caregiver By Janice Hucknall Snyder MSI Press www.msipress.com Survival of the Caregiver is the result of all the author’s ins and outs, ups and downs of caring for her husband for 20 years when he had Parkinson’s disease, followed by dementia. This book is written from the heart. It is as personal as it is informative. The author chose to use an alphabetical list of topics so that a busy caregiver can refer to a special need quickly. It is the author’s hope that this book will aid other caregivers in their sad but meaningful journey with their loved one. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss By Nancy L. Mace Grand Central Life & Style www.grandcentrallifeandstyle.com When someone in your family suffers from Alzheimer’s disease or other related memory loss diseases, both you and your loved one face immense challenges. For over 30 years, this book has been the trusted bible for families affected by dementia disorders. Now completely revised and updated, this guide features the latest information on the causes of dementia, the prevention of dementia, managing the early stages of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option. You’ll learn: t ćF CBTJD GBDUT BCPVU EFNFOUJB t )PX UP EFBM XJUI QSPCMFNT BSJTJOH JO EBJMZ care—meals, exercise, personal hygiene, and safety t )PX UP DPQF XJUI BO JNQBJSFE QFSTPO T false ideas, suspicion, anger, and other mood problems t )PX UP HFU PVUTJEF IFMQ GSPN TVQQPSU HSPVQT friends, and agencies t 'JOBODJBM BOE MFHBM JTTVFT ZPV NVTU BEESFTT Comprehensive and compassionate, The 36Hour Day may be the only guide you need to help your family through this difficult time.
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Navigating Deep Waters: Meditations for Caregivers By Jeannie Ewing and Eileen Benthal CreateSpace www.createspace.com Grief afflicts everyone’s lives, including caregivers who provide long-term care for one who requires special needs. Yet caregivers are so often left feeling burnt out, aggrieved, and simply lost or emotionally drained. Navigating Deep Waters: Meditations for Caregivers is a unique resource for busy caregivers who are physically and emotionally spent at the end of a long day. Navigating Deep Waters is divided into short, page-long chapters that act as meditations for the reader. At the end of each chapter, a few reflection questions intended to serve as journaling prompts and a short prayer are offered to close up the concept. The authors understand a caregiver’s life. Ewing has two daughters with special needs, one with a rare genetic condition. And Benthal has been a caregiver to her adult daughter, who also has a rare genetic condition, for 18 years. They know caregivers don’t have a lot of time, and the time they do have is precious. They must be selective with how they use what little time they have for themselves. Navigating Deep Waters: Meditations for Caregivers is your oasis in the midst of a long, dusty desert. It is refreshment for your mind and food for your soul. It will aid you on your unique journey and call as a caregiver and ultimately lead you to self-discovery, hope, and healing. A Caregiver’s Guide: Seven Guidelines to Assist You in Being a Better Caregiver By Mary Bryan Amazon Digital Services LLC www.amazon.com A Caregiver’s Guide offers a concise, easy-to-read, hands-on, practical, organized guidebook for any caregiver. It is based on the Holy Bible and heartfelt personal experience. This short guide transcends cultures and generational boundaries. It deals with the human elements of caregiving. This model can be used as a reference over and over again to assist you in being a better caregiver.
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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 t "TTFTTNFOU PG DBSFHJWFS BOE DBSF SFDJQJFOU OFFET t 3FTQJUF DBSF t 5SBJOJOH JO DBSFHJWJOH TLJMMT
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 the Caregiver Support Programs is to reinforce the DBSF HJWFO UP QFPQMF PWFS UIF BHF PG PS BEVMUT XJUI DISPOJD EFNFOUJB To determine the needs of 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) State No**
Federal No**
Caregiver must be related to the care receiver.
No
No***
Household income of care receiver is used to determine eligibility.
Yes
Yes
Care receiver must require assistance with two or more ADLs.
No (1)
Yes (2)****
Maximum amount of monthly reimbursement for caregiver expenses (depending on reimbursement rate chart) is:
$200*****
$200*****
Maximum amount of reimbursement for home modification/ assistive devices (depending on reimbursement rate/cost-sharing chart and availability of funding) is:
$2,000
$2,000
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.
Yes
Yes
Caregiver must be actively involved with various aspects of the care receiver’s care on a regular basis.
Yes
Yes
Caregiver must reside in the same household as care receiver.
t 'JOBODJBM BTTJTUBODF UP QVSDIBTF TVQQMJFT PS TFSWJDFT t Limited funding for assistive devices and home modifications t #FOFĕUT DPVOTFMJOH PO TFSWJDFT BWBJMBCMF UISPVHI MPDBM state, and federal programs t 3FGFSSBMT UP GBNJMZ TVQQPSU PS EJTFBTF TQFDJĕD organizations such as Children of Aging Parents or the Alzheimer’s Disease & Related Disorders Association t "TTJTUBODF JO DPNQMFUJOH CFOFĕUT BOE JOTVSBODF GPSNT
Eligibility If you are age 18 or older and the primary caregiver* of B GVODUJPOBMMZ EFQFOEFOU QFSTPO XIP JT BHF PS PMEFS ZPV 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 under age 18 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
**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 under age 18. ***Must be related by blood, marriage, or adoption if the 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 under age 18. ****ADL requirement does not apply if the caregiver is 55 years of age and older caring for a child under age 18. *****Up to $500 with documentation to justify need. CAREGIVER SOLUTIONS 2017 BUSINESSWoman
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10 Must-Ask Financial Q uestions for Your Aging Loved One By KURT KAZANOWSKI What do you need to know about your parents’ finances? Oftentimes those in the boomer generation and prior did not publically discuss personal finances, but there comes a time when it should be shared with adult children or other trusted loved ones. Some may gather the following material in the following questions naturally through organic conversations. Others may have to pry the slightest monetary information out with the Jaws of Life. Each situation is different. Be open and flexible to your loved one’s comfort level with the topic. Remain sensitive when asking the following 10 financial questions: 1. Have you named a durable power of attorney to manage your finances? First, you need to find out if they named a durable power of attorney. This is to access their personal accounts, when financial decisions are beyond their capabilities. If POA is not established, you will be required to go to court to receive guardianship of your parents. 2. Where do you keep your financial records? Whether they keep their money and documents in a bank, a safe, or under the mattress, you need to know where to find records. Also, find out the location of keys or codes to lock boxes or safes. Last, make sure you have login and password information for their accounts. 3. What are the names of your financial institutions and the corresponding bank account numbers? In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have, and where do they keep their statements? Compile a comprehensive document of all the information you receive. It will be easier for you in the long run. It can be good to close or consolidate some accounts if your loved one’s health is deteriorating quickly. 4. What are your monthly expenses? Gather information on their mortgage, car payment, credit card debt, electric bills, and other expenses. Be mindful of their organizational system. 20
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Many people have their own methods, and if you come into their space intrusively, it can be jarring. 5. How do you pay your bills? Discover what kind of timetable they work with and if they pay their bills on time. If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks? If there is a problem with debt, this is the time to find out about it. You don’t want to be saddled with their financial missteps during the grieving process. 6. How much is annual income, and where does it come from? Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony? Tally it all up and know the ins and the outs. 7. Do you receive Medicare, Medicaid, or Social Security? If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance. 8. What kind of medical health insurance do you have in addition to Medicare? Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension? Be sure to check on life insurance policies, too. There are many scams that target elderly individuals. Keep an eye out for fishy-looking statements or no statements whatsoever from accounts they believe they possess. 9. Do you have long-term care insurance? A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, www.BusinessWomanPA.com
and they can no longer live on their own, what can they afford in terms of housing? 10. Do you have an accountant or financial planner? Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional to discuss their situations. Make sure a will is established.
One option is to cover all issues in one financial sit-down. This is good if you want to get it over and done with. Second, you can ask a question every now and then, and address the overall picture at the end. Some of our loved ones are not as comfortable as we might be discussing financial matters. Take it slowly and at a manageable pace.
These questions don’t need to be asked in a prying manner, but they need to be addressed sooner rather than later. Depending on your loved one’s comfort around money, these questions can be tackled one of two ways.
Kurt A. Kazanowski, MS, RN, CHE, has three decades of experience as a healthcare executive and is an expert in senior care, home care, and hospice. He is author of A Son’s Journey: Taking Care of Mom and Dad. For more information, visit www.kaznow.com and www. hospiceadvisors.com.
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One Size By LISA M. PETSCHE Much is written about caring for aging relatives, offering general advice and specific tips to family caregivers. It may all sound good, but in practice, some information and ideas will be more helpful than others. That’s because, although caregivers face many similar challenges, no two caregiving situations are alike. Numerous factors account for the differences among caregivers’ experiences. Caregiving Variables Interpersonal issues: The nature and history of the caregiver’s relationship with their relative plays a key role in how caregiving unfolds. If personalities, habits, expectations, or values clash, the caregiver is likely to experience more stress than the average person in that role. Caregiver’s health: If they have physical or mental health challenges, caregiving is likely to be experienced as more difficult. Even if their health is initially good, this may change over time, especially if caregiving is prolonged, intense, or marked by complications and crises. Timing: Since some stages of life involve more responsibilities than others, the timing of the caregiving journey has a major impact on caregiver burden and coping. Caring for an older relative can be especially challenging when the caregiver is looking after multiple relatives, raising their own family, or employed, especially in a demanding type of work. If more than one of these applies, caregiver stress is further multiplied. Care receiver’s needs: The more physical and mental limitations a care receiver has, the more time, energy,
22
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Doesn’t Fit All Caregivers and skills are required of the caregiver to meet the person’s needs. The extent to which the care receiver’s health is stable is another significant variable in caregiver coping. Stress can also be higher when the relative has multiple major medical diagnoses—for example, Alzheimer’s disease and cancer. Available supports: Ideally, other family members pitch in and regularly give the caregiver a break; however, for various reasons, this does not always happen. Community resources can also go a long way to support a caregiver’s efforts, but the availability of such resources varies from one community to the next, as does the cost. Finances: If the caregiver or care receiver can afford the financial cost of home renovations, medical equipment, and private healthcare services as needed, this is likely to make caregiving safer and less stressful. And if the cost of a regular vacation for the caregiver and concomitant respite care for their relative is feasible, this can go a long way toward keeping the caregiver healthy in body, mind, and soul. Expectations: Some caregivers can be their own worst enemy, expecting too much of themselves, due to perfectionist tendencies or inexperience. Care receivers, too, vary in their expectations—regarding caregiver availability, privacy (if they live together), outside help (whether or not they will accept it), and financial arrangements (who pays for what), among other issues. Cultural factors may also play a role.
although perhaps not evident from where you sit. When you come across caregiving advice, no matter what the source, know that it won’t always be applicable because, in some ways, your situation is unique. Ultimately, you need to do what works for you and feels right.
Lisa M. Petsche is a social worker and a freelance writer specializing in boomer and senior health matters. She has personal and professional experience with eldercare.
By assessing needs, SCSCPA recommends services to state-funded eligible, physically disabled adults, to help them live safely and independently in their homes. 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.
Words of Wisdom
Service Coordination of South Central Pennsylvania, Inc.
If you are a caregiver, try not to compare yourself with others in this role. Their circumstances are likely to be different,
(SCSCPA) #SPBEXBZ 4VJUF t )BOPWFS 1"
www.BusinessWomanPA.com
(800) 223-0467
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Tax Help for Caregivers of Elderly Parents By JIM MILLER Are caregiving expenses tax deductible? I provide a lot of financial support to my elderly mother and would like to find out if I can write any of it off on my taxes. — Supporting Son Dear Supporting, There are actually several tax deductions and credits available to adult children who help look after their aging parents or other relatives. Here are your options along with the IRS requirements to help you determine if you’re eligible to receive them. Dependency Deduction If you’re paying for more than 50 percent of your mom’s living costs (housing, food, utilities, medical and dental DBSF USBOTQPSUBUJPO BOE PUIFS OFDFTTJUJFT BOE IFS gross income (not counting her Social Security benefits) was under $4,050, you can claim your mom as a dependent on your tax return and reduce your taxable income by $4,050. Also note that your mom doesn’t have to live with you to qualify as a dependent, as long as her income was under $4,050 and you provided more than half her financial support. If your mother does live with you, you can include a percentage of your mortgage, utilities, and other expenses in calculating how much you contribute to her support. IRS Publication 501 (see www.irs.gov/pub/irs-pdf/p501.pdf) has a worksheet that can help you with this. To receive this, or other IRS publications or forms via NBJM DBMM Shared Support If you share the financial responsibility for your mom with other siblings, you may be eligible for the IRS multiplesupport declaration. Here’s how this works. If one sibling is providing more than half the parent’s financial support, only that sibling can claim the parent. But if each sibling provides less than 50 percent support, but their combined assistance exceeds half the parent’s support, any sibling who provides more than 10 percent can claim the parent as a dependent. But only one sibling can claim the tax break in any given year. Siblings can rotate the tax break, with one claiming the parent one year and another the next. The sibling who claims the parent as a dependent will need to fill out IRS 24
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Form 2120 (www.irs.gov/pub/irs-pdf/f2120.pdf) and file it with his or her tax return. Medical Deductions If you can’t claim your mom as a dependent, you may still get a tax break for helping pay her medical costs. The IRS lets taxpayers deduct money spent on a parent’s healthcare and qualified long-term care services, even if the parent doesn’t qualify as a dependent. To claim this deduction, you still must provide more than half your mom’s support, but your mom doesn’t have to be under the $4,050 income test. And the deduction is limited to medical, dental, and long-term care expenses that exceed 10 percent (or 7.5 QFSDFOU JG ZPV XFSF CZ %FD PG ZPVS BEKVTUFE gross income. You can include your own medical expenses in calculating the total. See the IRS publication 502 (www.irs.gov/pub/irs-pdf/ p502.pdf) for details. Dependent Care Credit If you’re paying for in-home care or adult daycare for your mom so you are free to work, you may also be able to claim the Dependent Care Tax Credit, regardless of whether or not your mom qualifies as a dependent on your tax return. This credit can cut up to $1,050 off your tax bill for the year. In order to claim it, you must fill out IRS Form 2441 (www.irs.gov/pub/irs-pdf/f2441.pdf) when you file your federal return. Check Your State In addition to the federal tax breaks, more than 20 states offer tax credits and deductions for caregivers on state income taxes too. Check with your state tax agency to see what’s available. For links to state tax agencies, see www. taxadmin.org/state-tax-agencies. Tax Year 2017 Caregiving Deductions ćFTF ĕHVSFT SFQSFTFOU EFEVDUJPOT GPS UBY SFUVSOT Check with your accountant or tax preparer for 2017 allowable deductions as some amounts may change.
Jim Miller is a contributor to the NBC Today show and author of the Savvy Senior book.
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Frequently Asked Q uestions 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 Area Agency on Aging for particular services or programs. Are there any programs offered by the state for the overall health and wellbeing of its senior citizens? Facilities, such as senior centers, throughout Pennsylvania offer up to 80plus wellness programs, including: t 'BMMT QSFWFOUJPO DMBTTFT t &YFSDJTF DMBTTFT t /VUSJUJPO DMBTTFT t )FBMUI TDSFFOJOHT t $ISPOJD EJTFBTF TFMG NBOBHFNFOU workshops For more information, contact your local Area Agency on Aging. What types of services are offered by the state for older Pennsylvanians who want to remain in their homes longer? Residents* of the commonwealth who BSF ZFBST PG BHF PS PMEFS NBZ CF FMJHJCMF for in-home services, including but not limited to: t "EVMU EBZDBSF t 5SBOTQPSUBUJPO t )PNF EFMJWFSFE NFBMT t 1FSTPOBM BTTJTUBODF BOE DBSF TFSWJDFT t )PNF NPEJÄ•DBUJPOT t $BSF NBOBHFNFOU t )PNF IFBMUIDBSF t 3FTQJUF CSFBL GSPN DBSFHJWJOH
t 0UIFS *Participants may be required to share in the costs of services. 26
Are there any housing programs that would provide financial relief for older Pennsylvanians? The Property Tax/Rent Rebate Program CFOFÄ•UT FMJHJCMF 1FOOTZMWBOJBOT BHF and older; widows and widowers age 50 and older; and people with disabilities age 18 and older. For more information on eligibility or to obtain an application, contact the Department of Revenue.
services. Other benefits could also include counseling, education, and financial information. See page 19 for more details.
Do the counties within Pennsylvania offer any kind of transportation program, either for day-to-day activities or to essential appointments?
Who is eligible for PACE? For a single person, your total income must be $14,500 or less. For a married couple, your combined total income must be $17,700 or less. Social Security Medicare Part B premiums are now excluded from income. 1SFTDSJQUJPOT DP QBZ GPS HFOFSJD co-pay for single-source brand, $9.
Pennsylvania Free Transit Program 1FOOTZMWBOJB JOEJWJEVBMT BHF BOE older can ride free on local fixed-route service, which is sponsored by the Pennsylvania Lottery. Schedules and hours of service are available by contacting the local public transit agency. Senior citizens must present a Commonwealth I.D. card or a Medicare card. Shared-Ride Program For older Pennsylvanians, the sharedSJEF QSPHSBN FOBCMFT TFOJPS DJUJ[FOT years of age and older to use shared-ride, demand-responsive (normally curb-tocurb) services and pay only a small portion of the regular shared-ride fare. To qualify for the reduced fare, seniors NVTU CF BU MFBTU ZFBST PG BHF BOE CF BCMF to supply one of the eligible proofs of age to their local shared-ride provider. Usually a 24- to 48-hour reservation is required. What is the Pennsylvania Caregiver Support Program? The Pennsylvania Caregiver Support Program’s major focus is to reinforce the care being given to people over the age of PS BEVMUT XJUI DISPOJD EFNFOUJB 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
BUSINESSWoman CAREGIVER SOLUTIONS 2017
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 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 Agency on Aging office for forms or more information. See www.medicare.gov for more information. Effective Jan. 1, 2017, PACENET cardholders not enrolled in a Part D plan will pay a $39.45 premium at the pharmacy each month. Income qualification is based on prior year’s income and includes taxable and nontaxable sources. Assets and resources are not counted as income. What is the Extra Help Program? If your monthly income is up to $1,528 for singles ($2,050 for couples) and your assets are below specified limits, you may be eligible for Extra Help, a federal program that helps you pay for some or most of the costs of Medicare prescription drug coverage. www.BusinessWomanPA.com
If you are enrolled in Medicaid, Supplemental Security Income, or a Medicare Savings Program, you automatically qualify for Extra Help. You do not have to apply for this extra assistance. If you automatically qualify for Extra Help, you will still be required to fill out an application. You can do that through the Social Security Administration, using either the agency’s print or online application, or at your local Medicaid office. If you become eligible, you will get a Special Enrollment Period to enroll in a Medicare private drug plan. See www. medicare.gov for more information. 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 drugeducation materials. 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: 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. 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
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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 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. 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 1FOOTZMWBOJBOT BHF BOE PWFS ćFZ DBO 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 PS ZPVS MPDBM "SFB "HFODZ PO Aging for more information. The services are free of charge.
What is the waiver program offered through the Pennsylvania Department of Aging? There are several waivers available through the Pennsylvania Department of "HJOH GPS QFPQMF BHFE BOE PMEFS XIP 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: t "EVMU EBJMZ MJWJOH TFSWJDFT BEVMU daycare) t "UUFOEBOU DBSF QFSTPOBM DBSF
t $PNNVOJUZ USBOTJUJPO TFSWJDFT (moving assistance) t $PNQBOJPO TFSWJDFT FTDPSU
t $PVOTFMJOH t &OWJSPONFOUBM BDDFTTJCJMJUZ modifications (home and/or vehicle) t 'JOBODJBM NBOBHFNFOU TFSWJDFT t )PNF IFBMUI TFSWJDFT t )PNF NFEJDBM FRVJQNFOU BOE TVQQMJFT t .FBM EFMJWFSZ IPU PS QSFQBSFE
t /PONFEJDBM USBOTQPSUBUJPO t 1FSTPOBM FNFSHFODZ SFTQPOTF 1&3 system t 3FTQJUF DBSF TFSWJDFT UFNQPSBSZ caregiver relief) 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 Pennsylvania Government Portal.
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DIRECTORY OF HOUSING & CARE PROVIDERS Asbury Home Services 5225 Wilson Lane Mechanicsburg, PA 17055
717.591.8332 kbruner@asbury.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 bvmarketingdept@asbury.org 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 5
Calvary Fellowship Homes 502 Elizabeth Drive Lancaster, PA 17601
717.393.0711 mmorris@calvaryhomes.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 harry@coloniallodgepa.com www.coloniallodgepa.com
Comfort Keepers 7A North Clover Lane Harrisburg, PA 17112
717.920.9898 ckharrisburg@comcast.net www.comfortkeepers.com
Griswold Home Care 1926 Market Street Camp Hill, PA 17011
717.975.0540 paulet.hibner@griswoldhomecare.com www.griswoldhomecare.com
Homeland Hospice, HomeHealth, 717.221.7890 and HomeCare www.HomelandatHome.org 2300 Vartan Way, Suite 270 Harrisburg, PA 17110 We are a community outreach of Homeland Center providing a continuum of At Home services—from non-medical personal assistance to skilled nursing and compassionate palliative care. See ad page 11 The Campus of the Jewish Home 717.657.0700 of Greater Harrisburg kcarter@jhgh.org 4000 Linglestown Road www.jewishhomeharrisburg.org Harrisburg, PA 17112 Whether it is independent living, personal care, skilled nursing, or rehabilitation, we are here to meet your needs. We provide compassionate care in a safe, serene, suburban setting. See ad page 21 Messiah Lifeways 100 Mount Allen Drive Mechanicsburg, PA 17055
717.591.7225 life@messiahlifeways.org www.messiahlifeways.org
Messiah Lifeways offers more options for caregivers and the ones they love, including: support groups, workshops, free coaching, our Adult Day and At Home services, and respite. See ad page 13
Providence Place of Dover 3377 Fox Run Road Dover, PA 17315
717.767.4500 mkemp@prov-place.com jorndorff@prov-place.com www.providence-place.com
Newly renovated single-story senior residence offering independent living, personal care, and memory support services. Choose from a variety of apartment styles and enjoy chefprepared meals and a vibrant activities program.
COLOR KEY FOR DIRECTORY OF CAREGIVING PROVIDERS INDEPENDENT RESIDENCES PERSONAL CARE HOME ASSISTED LIVING RESIDENCE DEMENTIA UNITS NURSING CARE COMMUNITY 28
BUSINESSWoman CAREGIVER SOLUTIONS 2017
REHABILITATION FACILITY RESPITE CARE ADULT DAY CENTER HOME CARE SERVICES HOSPICE CARE www.BusinessWomanPA.com
DIRECTORY OF HOUSING & CARE PROVIDERS SpiriTrust Lutheran 1050 Pennsylvania Avenue York, PA 17404
717.854.3971 mwilliams@spiritrustlutheran.org 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 jkeefer@spiritrustlutheran.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 jgochoco@spiritrustlutheran.org 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 edoub@spiritrustlutheran.org www.spiritrustlutheran.org
717.235.5737 pmitchell@spiritrustlutheran.org www.spiritrustlutheran.org
717.764.9994 hbair@spiritrustlutheran.org www.spiritrustlutheran.org
717.637.0633 lsterner@spiritrustlutheran.org www.spiritrustlutheran.org
717.591.2102 drizio@vibralife.net www.vibralife.net
Enhance your life at VIBRALife. Offering a continuum of care with personal care, including memory care, skilled nursing, and sub-acute rehabilitation services. Call today. See ad page 17
Visiting Angels 1840 East Market Street York, PA 17402
717.751.2488 information@visitingangelsyork.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 9
Visiting Angels 4607 Locust Lane Harrisburg, PA 17109
717.652.8899 717.737.8899 visitingangelshbg@comcast.net 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 caregiving opportunities on a short-term basis. May range from personal to nursing care, at home or in a care community.
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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 “age in place.� 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.
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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
610.344.6350 717.240.6110 717.780.6130 717.299.7979 717.273.9262 717.771.9610 www.p4a.org
See ad on this page
COMPLEMENTARY ASSISTANCE Service Coordination of South Central PA 800.223.0467 141 Broadway, Suite 310 spanekbaker@scscpa.org 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 23
HOME MODIFICATIONS Amramp Serving all of Central PA See ad page 15
717.745.7267 rodney.hulsey@amramp.com www.amramp.com
LEGAL Nikolaus & Hohenadel, LLP Barbara Reist Dillon, Wanda S. Whare 212 North Queen Street Lancaster, PA 17603
717.299.3726 bdillon@n-hlaw.com wwhare@n-hlaw.com www.n-hlaw.com
Areas of expertise include: elder law, wills, powers of attorney, living wills, medical powers of attorney, and estate settlement. Offices in Lancaster, Columbia, and Strasburg.
MEDICAL EQUIPMENT Amramp Serving all of Central PA See ad page 15
717.745.7267 rodney.hulsey@amramp.com www.amramp.com
Responding to the Needs of Americans 60 and Over
ADVOCACY. ACTION. ANSWERS ON AGING. www.p4a.org Contact your local agency for assistance (See listings above). 30
BUSINESSWoman CAREGIVER SOLUTIONS 2017
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— Support and Information — AgingCare.com 239.594.3222 www.agingcare.com
Eldercare Locator 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 www.asha.org American Urological Association PS www.auanet.org Arthritis Foundation Information 800.283.7800 www.arthritis.org BenefitsCheckUp 571.527.3900 www.benefitscheckup.org CareCentral www.carecentral.com
National Library Service for the Blind & Physically Handicapped 202.707.5100 www.loc.gov/nls National Parkinson Foundation, Inc. www.parkinson.org
EyeCare America www.eyecareamerica.org
Needy Meds www.needymeds.org
Family Caregiver Alliance www.caregiver.org Guide Dog Foundation for the Blind 800.548.4337 www.guidedog.org Insurance Information Institute www.cancerandcareers.org/resources Medicare www.medicare.gov
Pennsylvania Department of Human Services www.dhs.pa.gov
RxAssist www.rxassist.org
Medicare Telephone Hotline www.medicare.gov National Alliance for Caregiving 301.718.8444 www.caregiving.org
Caregiver Action Network 202.454.3970 www.caregiveraction.org Caregiver Media Group 800.829.2734 www.caregiver.com
National Health Information Center 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
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PACE/PACENET 800.225.7223 www.aging.state.pa.us/aging
Rural Information Center www.nal.usda.gov/ric
Medicare Rights 800.333.4114 www.medicarerights.org
National Council on Alcoholism & Drug Dependence, Inc. www.ncadd.org
Crohn’s and Colitis Foundation of America, Inc. 800.932.2423 www.ccfa.org
Office of Minority Health Resource Center www.minorityhealth.hhs.gov
Shriners Hospital for Children Referral Line 800.237.5055 www.shrinershospitalsforchildren.org Simon Foundation for Continence www.simonfoundation.org
National Institute of Mental Health Information Line www.nimh.nih.gov CAREGIVER SOLUTIONS 2017 BUSINESSWoman
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If you worry about your parents maintaining their home as they age, living alone, their safety or even their health, a SpiriTrust LutheranŽ 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.
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
$ !!!
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