Caregiver Solutions 2018

2018

CAREGIVER SOLUTIONS

A Resource Guide for Family Caregivers Articles Directory of Providers Support Services Books and Resources

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caregiver solutions 2018 Publisher

Donna K. Anderson

Editorial

Vice President & Managing Editor Christianne Rupp Editor Megan Joyce Contributing Writers Jahnna Beecham Jeffrey Bellomo, Esquire Barbara Trainin Blank Clay Jacobs Jim Miller Katie Ortlip Lisa M. Petsche Rochelle A. Shenk Philip D. Sloane, M.D., M.P.H. Barry Sparks

Art Department

Production Coordinator Renee McWilliams Production Artist Lauren McNallen

Dear Readers, Thank you for picking up this copy of Caregiver Solutions Guide. Every year, the editorial committee discusses what topics would be of interest to many caregivers. There are so many issues on the minds of caregivers that it’s hard to narrow it down.

I hope what has been covered in this year’s edition broaches some topics that are on your mind, answers a few questions, offers support and resources, and provides guidance to living and care options you can count on.

We all know that exercise is good for us, but for persons with Parkinson’s disease, it has even been proven to slow the progression of the disease. And early research suggests that boxing, a hot new fitness trend in general, is showing good results.

You have so many questions right now. Please take some time to read the Frequently Asked Questions on page 14. Learn more about PACE and PACENET, federal and state assistance programs, senior transportation services, and more.

An important feature in Caregiver Solutions is the Directory of Providers and Services. Whether you’re considering a move or some type of care or assistance for your loved one, please check it out. The organizations included are eager to discuss how their services can help in your caregiving responsibilities.

Your situation is unique to you, but you don’t have to be alone in your journey. Look to your local Office of Aging; they have a wide range of people and programs to assist you. Join a support group; hear from other people whose experiences are similar to yours.

Read what you can, whether it’s in print or online (use only reliable web sources, though).

And, most importantly, don’t forget to take care of yourself and your needs.

Christianne Rupp

Cover Design Michael Bobin

Sales

Account Executive Wendy Letoski Janette McLaurin Jessica Simmons Angie Willis Account Representatives Matthew Chesson Lauren Rosier Jennifer Schmalhofer

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Administration

Business Manager Elizabeth Duvall Marketing Coordinator Kelsey Fishburn Copyright © 2018 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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Editor

Contents 4 Suddenly You’re a

13 Music – The Benefits to

6 Legal Capacity Versus

14 Frequently Asked

8 Pain — Recognizing

16 Is Your Blood Pressure

Persons with Dementia

Caregiver

Medical Capacity

and Preventing it in Persons with Dementia

9 Exercise, Such as

Boxing, Helps Stem Parkinson’s Progression

11 Deep Brain

Stimulation Lessens Parkinson’s Disease Symptoms

6

Questions

Too High?

Don’t Try to Go it Alone

25 Medication Safety and Management

26 Good Reads

18 Help with Home-Care

28 Directory of Housing

20 Caregiver Support

30 Directory of Ancillary

21 Conversations Focus

31 Support and

Bills

Programs

on Death and Dying at Death Cafés

9

23 Is it Time to Get Help?

18

& Care Providers

Services

Information

23

caregiver solutions 2018 BUSINESSWoman

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Suddenly You’re a Caregiver

By JAHNNA BEECHAM and KATIE ORTLIP The instant your parent, spouse, or another loved one is diagnosed with a terminal illness, everything changes for everyone.

You probably have a fulltime job outside the home, not to mention family and other outside commitments, and now you’ve been handed another fulltime job that is emotionally and physically overwhelming.

The only consolation (if you want to call it that) is that you are not alone. According to WebMD, 44 million Americans are the unpaid and untrained caregivers for a family member.

Many of these caregivers have found a way to take care of their loved ones without destroying their own health, but as you take on this new responsibility, it’s good to know what lies ahead.

The Caregiver’s Journey First, your loved one’s illness will never happen at a convenient time. You won’t have enough time or money to help out the way you would like, and you’ll feel bad about that.

Just when you think you’ve got all the caregiving problems solved, something will happen to make it all fall apart and you’ll have to start over.

You will probably quarrel with a close family relative about how to give the best care possible and, hopefully, that won’t cause permanent damage between you.

There will be moments when you will feel enormous resentment, which will be quickly followed by enormous guilt. At times, you will be overwhelmed by grief.

Anticipatory Grief Just as your loved one struggles to cope with his final journey, you too are preparing yourself for what you will do after he is gone.

As a way of coping with the pain, you may find yourself detaching from your loved one and grieving his loss before it happens.

This is called “anticipatory grief” and is a natural reaction.

It can be so intense that when your loved one dies, you can’t feel anything but numb. This can cause you to question your love and yourself.

All of this is normal. Anticipatory grief does not take the place of grief after death — that grief comes to each of us in its own way.

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Care for Yourself In a superhuman effort to maintain your old life and be the best caregiver in your new life, something will have to give, and you will probably sacrifice your own health for your loved one’s.

Remember, airlines instruct the parent to put the oxygen mask on herself before she puts it on her child. Take care of yourself first.

Remind yourself to take time: time to eat right, time to exercise, time to do the things you love, and time to see friends, even if it’s reduced time.

It Takes a Village When you first become a caregiver, friends and family will ask if there is anything they can do to help. Your inclination will be to say, “No, thanks. I’m fine.”

Try thinking ahead to what might be your needs: a person to run errands, walk the dog, mow the lawn, do some shopping, go to the pharmacy, and just sit with your loved one while you give yourself some very necessary “me” time.

Keep a small notebook in which you write these notes, and ask a potential helper to look at the list and see what might be something they could do. Write their name and phone number/email next to the items.

When you need help, call. We’re all in this together, and sooner or later most of us will either be a caregiver or need one.

Caregiver Burnout Being a caregiver is hard work on so many levels. You might reach a point where you are burned out and absolutely certain that you cannot go one more day.

If you find yourself constantly tired, depressed, angry, unable to concentrate, and entertaining thoughts about doing harm to your patient or yourself, it’s time to make a change. www.BusinessWomanPA.com

If possible, hire help. This may not be an option for many because of the expense, but if your physical and mental health is suffering, talk to the doctor about exploring respite options or a care facility for your loved one. Explain to her that you still love her, but you need the help or you’re learning about options.

forgive yourself. Remember that you did the best you could at the time with the information and skills you had. Never forget that being present day after day is the best gift you could have given your loved one.

Forgive Yourself After your loved one’s death, you may have regrets and feel guilty that you didn’t do enough or about what you should have or shouldn’t have done or said.

This is normal, but it’s important to

Jahnna Beecham, National Geographic editor, and Katie Ortlip, a hospice social worker, are the authors of Living with Dying: A Complete Guide for Caregivers, an instruction guide to understanding the dying process as a caregiver. www.livingwithdying.com. See book review on page 27.

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5

Legal Capacity Versus

By JEFFREY BELLOMO, Esquire As an attorney who specializes in estate planning and elder law, I often find there are times when tensions between the medical profession and the legal profession arise.

“John’s” daughter, who was a client of ours, called and mentioned that the doctor couldn’t understand how her father did a new power of attorney when the doctor determined six months ago that he had dementia.

This is an all-toofrequent experience that occurs. The medical profession works in its lane, and the legal profession sometimes works in a different lane, and the two sometimes do not mesh.

One area in particular is in the capacity to sign documents. Legal capacity and medical capacity have two different meanings.

Legal capacity is the legal term used by attorneys to determine when somebody has the ability to enter into a transaction such as a will, a power of attorney, or other document.

Of course, whether a person is competent for medical purposes is determined by healthcare professionals; their determination is more global, i.e, as a general, ongoing assessment of whether the

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person can manage her or his medical or financial affairs.

On the other hand, the determination of whether a person has the legal capacity to sign a document or enter into a contract or other transaction requires a much different, and lower, standard and is determined by an attorney, not a doctor, after meeting with the individual and speaking with her or his loved ones.

Thus, even if a person has a medical diagnosis of dementia, that in and of itself does not necessarily mean that person cannot sign a will or other legal document, even if a person’s doctor determines that the person’s capacity to manage his or her own affairs is compromised.

The legal capacity needed to sign a will has been defined by the courts as: the ability to understand and carry in mind, in a general way, the nature and situation of his or her property and his or her relations to those persons who would naturally have some claim to his or her remembrance; freedom from delusion, which is the effect of disease or weakness and might influence the disposition of his or her property; and the ability at the time of execution of the will to comprehend the nature of the act of making a will.

Thus, signing a will does not require a great deal of capacity.

Even if, on the next day, the testator does not remember signing the will and would not be sufficiently “with it” to execute a will

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Medical Capacity then, the will is not invalidated if he understood it when he signed it.

Because medical and financial powers of attorney do not dispose of property, the standard for those is even lower than for a will (nature of the property is not really relevant).

For financial or medical powers of attorney, the primary concern is that the person trusts his agent or attorney-in-fact to manage his or her financial or medical affairs.

A properly drafted financial power of attorney grants the agent (also known as the attorney-in-fact) broad yet specific powers to manage the financial life of the person who signed the power of attorney (known as the principal); that agent essentially stands in the principal’s financial shoes.

It is important to note that this article addresses the legal capacity to sign estate planning documents, such as healthcare and financial powers of attorney and wills; it does not address the legal capacity to enter into contracts, which is a higher standard, because contracts require a broader understanding than outlined above.

Thus, the fact that a client does not know the year or the name of the president may mean she or he does not have capacity to enter into a contract, but not necessarily that she or he can’t execute a will or power of attorney.

Although there is a statute, or law, on powers of attorney, the powers are somewhat limited, and the statute determines who can make decisions, and what kind of decisions, for the incompetent person. This law is no substitute for a properly drafted power of attorney.

If the attorney determines that the person does not have the legal capacity to sign a power of attorney, and there is none in place or it is inadequate, then the most likely recourse is to seek legal guardianship of the person.

Further, both medical and financial powers of attorney do have limitations. They do not remove the principal’s ability to make decisions; they merely give others the co-existing power to make decisions for the principal.

A guardianship may be necessary if the person can still verbalize medical decisions or make financial decisions, but those

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decisions are not rational, are harmful to, or are not in the best interest of the principal.

Guardianship is a formal legal process that requires going to court and asking a judge to determine that a person is incapacitated as defined by state law, which is that he or she is so mentally and/or physically disabled that he or she is unable to manage his or her own affairs, either medical or financial, or both.

If the judge determines the person is incapacitated, then the judge will appoint a legal guardian for that person to make his or her medical and/or financial decisions; that person no longer has the legal power to make decisions for himself or herself (though he or she is to be consulted on important decisions).

It is the responsibility of the appointed guardian to act in the best interest of the incapacitated person and to manage her or his affairs in a reasonably prudent manner. A legal guardianship is a very formal, emotional, and often expensive process.

Properly drafted powers of attorney are far less expensive and less emotional, will provide great peace of mind for the family, and, in most cases, will answer a person’s needs; they always should be the first resort, with guardianship only a painful last resort.

Note: This information is for educational purposes only. Please contact an attorney with elder law planning expertise for more information about your particular situation.

Jeffrey R. Bellomo, esquire, with Bellomo & Associates, is a Certified Elder Law Attorney by the National Elder Law Foundation under authorization of the Pennsylvania Supreme Court. www.bellomoassociates.com

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PAIN –

Recognizing and Preventing it in Persons with Dementia

their feet, it’s probably because their feet hurt.

If you’re concerned about pain and the person can communicate, ask them about it with simple yes/no questions. Try gently touching the area of the body where you suspect pain while watching their reaction closely. If you think the person has pain, change what you’re doing. If it persists, get medical attention.

Tips to Prevent and Treat Pain during Daily Care • Plan daily care (like bathing or brushing teeth) at times when the person is most rested and relaxed.

By PHILIP D. SLOANE, M.D., M.P.H. As we age, aches and pains become more common.

Common causes of pain in older persons include arthritis; back or neck problems; muscle stiffness from not moving enough; intestinal problems, like gas or constipation; swollen or sore feet; and problems with the teeth or gums.

Someone with dementia may not express pain in typical ways, and so it may go unnoticed and untreated. For example, they may use words like “tight” or “broken down” or just moan or groan.

As dementia progresses, facial expressions, body movements, or behavior can reveal clues to pain. The person may not want to move a body part, may cover it, or get upset when it is touched.

For example, if the person gets fidgety, withdraws, or kicks when you try to wash 8

• Give pain medicine one to two hours before starting a painful activity.

• Keep the room well lit and at a comfortable temperature.

• Offer a distraction, such as calming music.

• Give simple directions.

• Say what you’re going to do before you do it.

• If the person is upset or shows signs of pain, stop what you are doing, pause, and start again, being slower or gentler.

Common Signs of Pain in Persons with Dementia Words and sounds: • Words like “ache,” “heavy,” “ouch,” “funny,” “not right” • Moaning

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• Shouting out • Noisy breathing • Sighing, crying • Whimpering Facial expressions: • Grimacing • Wrinkled nose • Eyebrow furrowed • Eyes shut tight • Sad or scared • Raised corner of the mouth Body movements: • Rigid, tense, still • Covering, rubbing, shaking, or protecting a body part • Changes in the way they walk or move Behavior: • Agitated, restless • Aggressive, angry • Withdrawn, not doing things they enjoy • More confused than usual • Change in eating or sleeping • Yelling • Overreacting Excerpted from Sloane’s book, The Alzheimer’s Medical Advisor: A Caregiver’s Guide. See book review on page 26.

Dr. Philip Sloane, a family physician and geriatrician, is a nationally recognized expert in both fields. He is particularly noted for his work around the management of behavioral symptoms in Alzheimer’s disease, for which he received the prestigious Pioneer Award from the U.S. Alzheimer’s Association.

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Exercise, Such as Boxing, Helps Stem Parkinson’s Progression

By BARBARA TRAININ BLANK While there is no cure for Parkinson’s disease yet, there is hope of mitigating its effects.

Parkinson’s is a degenerative neurological condition caused by the lack of dopamine in the brain, affecting smooth movements. Dopamine is a neurotransmitter essential to the normal functioning of the central nervous system.

The disease presents with motor and nonmotor symptoms, said Dr. Sol De Jesus, a neurologist at Penn State Hershey.

“The presentation and progression of symptoms varies for each individual,” says De Jesus. “While there is currently no cure, there are multiple interventions available that can help patients maintain a good quality of life.”

PD patients may be in various stages. At the highest level, they’re still working and have little or no impairment.

In the second stage, they were diagnosed two or three years earlier and still have balance.

At the third stage, the patient needs a cane and has balance issues.

At the fourth stage, he or she is wheelchairbound or using a walker. www.BusinessWomanPA.com

It isn’t possible to reproduce dopamine in the body, said Susan Ludwig, owner and head coach of Rock Steady Boxing, a relatively new (since 2006) exercise regimen used in the treatment of Parkinson’s disease.

“The patient can take medication, which has existed since the 1940s but hasn’t gotten more effective,” noted Ludwig.

Exercise has been proven to slow the progression of the disease, and the sooner after diagnosis the patient begins exercise, the better it works. Through exercise, patients can obtain an enhanced quality of movement because they have accessed their own dopamine, Ludwig said.

Ludwig is familiar with Parkinson’s as a professional working with patients, but also personally. Her grandmother was a Parkinson’s patient who became wheelchair-bound.

There are, at present, 545 Rock Steady Boxing affiliate programs in the world.

The discovery of the boxing program was serendipitous. An Indianapolis prosecutor with Parkinson’s disease had reached the point that Continued on the following page caregiver solutions 2018 BUSINESSWoman

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Continued from the previous page he couldn’t type on a computer. Friends started him on boxing to alleviate his frustrations. That boxer, Christy Rose Fulmer, developed Rock Steady.

Who initially made the connection between exercise and its effectiveness for people with Parkinson’s disease?

According to Ludwig, it was Becky Farley, who initiated the program called Parkinson’s Wellness Recovery Moves — a class Ludwig also offers along with Rock Steady Boxing.

Farley, CEO/founder of the nonprofit organization Parkinson Wellness Recovery, completed a National Institutes of Healthfunded randomized clinical trial to document the short-term efficacy of her exercise program.

In Farley’s original test group, 10 subjects with PD all ended up dying of typical age-related problems rather than PD-related problems.

Parkinson’s-specific exercises — including RSB, PWR Moves, and yoga — cause brain changes, reducing the likelihood a patient will get to the disease’s final stages.

“There are other forms of exercise, but boxing is the really cool way. People love it, and it’s fun,” said Ludwig.

Rock Steady Boxing is “kept light,” she added. “It’s non-contact boxing. We don’t hit each other, but punching bags.”

RSB also has been found effective with those suffering from Lewy body dementia, a condition that combines mental decline with Parkinson’s disease-like symptoms.

Parkinson’s patients often experience apathy, depression, and a loss of humor and joy in life.

“The class atmosphere of the RSB sessions and the boxing itself really seem to help,” said Ludwig. “The class members have fun, laugh, and talk about it with their families.”

Each workout session starts with a cardio warmup to loosen the joints and “get the brain ready to learn”; it also helps loosen the rigidity of the shoulders and hips.

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And “each workout session is complementary to the next,” said Ludwig.

“In addition to boxing, each session incorporates balance, strength, cardio, fine-motor skills, and cognitive challenges.

One area we like to focus on is largemuscle groups, including those specific to getting yourself up and down from a seated position. We do a lot of squats!”

Ludwig also strongly recommends that all class members seek out physical therapy at least once a year.

“Since Parkinson’s disease is progressive, treatment is about being proactive,” she said.

While no specific type of exercise is recommended in PD, according to De Jesus, she does believe exercise promotes good general health.

“It has been my experience that my patients with Parkinson’s disease who exercise regularly generally do better than those who do not,” De Jesus said.

Research is ongoing to determine exactly what type of exercise can influence the course of PD and PD symptoms and how exactly exercise may do that, added De Jesus. But the key is regular exercise and finding an exercise regimen the individual enjoys, while at the same time being appropriate for the stage of his or her disease.

“Rock Steady is another potential exercise option available to our Parkinson’s disease patients, in addition to physical regimens customized for PD — such as tai chi, yoga, swimming, and cycling,” De Jesus said. “I have several patients who have participated in Rock Steady classes and report improvement in the areas of social well-being and other PD symptoms.”

Patients considering starting an exercise regimen should first discuss it with their doctors, De Jesus advised.

Penn State has not conducted its own study on Rock Steady Boxing in PD, she said. But, she states, further prospective studies would be beneficial to understand how the regimen might impact PD symptoms and progression.

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Dr. Meredith Spindler, assistant professor of clinical neurology, Perelman School of Medicine, University of Pennsylvania.

“It is important to have a thorough discussion with your neurologist about the risks, benefits, and appropriate expectations of what DBS can and can’t do before deciding to proceed with the surgery. In the right candidate, it can result in dramatic improvement in the quality of life.”

DBS is not for everyone. The best candidates are those with these conditions: they have experienced Parkinson’s disease symptoms for at least five years; the symptoms respond to medications, but the effect doesn’t last as long as it used to; they have tried various doses and combinations of medications, without notable improvement; and the symptoms interfere with their daily lives.

“The best candidates are medically healthy and do not have poor balance or signs of dementia,” adds Spindler. She points

Disease

More than 1 million people in the United States have Parkinson’s disease, a progressive disorder of the nervous system that affects movement.

Treatment, which is based on each individual’s symptoms, typically begins with medication to help reduce unwanted movement. Over time, however, medication may become less effective.

If medications are not as helpful, patients may have an option of considering deep brain stimulation, a surgical procedure first approved to treat Parkinson’s disease tremor in 1997.

DBS, a 24-hour therapy, does not cure Parkinson’s disease or other neurological conditions. Nor does it slow the progression of Parkinson’s disease. It can, however, lessen symptoms and improve overall quality of life.

“DBS is a well-established, safe, and effective treatment for tremor and certain symptoms of Parkinson’s disease,” says

pt m y S

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More than 70 percent of people with Parkinson’s disease experience a significant improvement after DBS.

Continued from the previous page out that DBS surgery can cause dementia to get worse.

“If a patient has mild cognitive impairment but not dementia, we weigh the risks and benefits of the surgery carefully and may do a staged procedure (one electrode at a time) to reduce the risk of worsening cognitive function,” she says.

DBS uses a neurostimulator, a surgically implanted, batteryoperated medical device similar to a heart pacemaker. The device, approximately the size of a stopwatch, is placed under the skin near the collarbone or lower in the chest.

An electrode (a thin, insulated wire) is inserted through a small opening in the skull and implanted in a targeted area of the brain. The neurostimulator delivers electrical pulses to the areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and Parkinson’s disease.

Spindler says the patient is asleep for the majority of the procedure. The sedation is lifted briefly when the neurosurgeon feels the electrodes have been placed appropriately to examine the patient and ask questions about any side effects. This takes a few minutes and then the patient goes back to sleep. This happens twice if an electrode is placed on both sides of the brain.

DBS typically relieves neurological symptoms associated with Parkinson’s disease, such as tremor, stiffness and rigidity, slowed movement, walking problems, and muscle spasms.

Potential surgical risks associated with DBS include infection, stroke, and an allergic reaction. Postsurgical risks include slight paralysis, coordination issues, tingling or shocking sensation, speech or vision problems, and dizziness.

Other preexisting conditions can increase these risks.

Patients are usually discharged from the hospital the day after surgery, according to Spindler.

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DBS won’t eliminate symptoms, but more than 70 percent of people with Parkinson’s disease experience a significant improvement, according to the Cleveland Clinic.

With DBS, many patients are able to continue daily activities, such as dressing, bathing, and brushing their teeth.

Spindler says the surgery itself often improves a patient’s symptoms immediately, but only for about a week. This is because the wound in the area of the brain where the electrode is placed actually improves symptoms until it heals.

“Then after a week of improvement, the patient’s symptoms return and programming takes several months to reach optimal settings (for the neurostimulator),” she says. “Usually, there is some improvement within the first few months, but maximal improvement may take six months or more.”

She adds that most patients continue some medication after surgery, but they are often able to lower their doses significantly.

Spindler says if the device is on appropriate settings, the patient should simply feel improvement of their symptoms, without any sensations. The settings can be adjusted as necessary.

If the DBS device is malfunctioning, the patient will most likely experience a return to their original symptom, such as tremor. The device can be replaced, if necessary. It also can be turned off at any time, without long-term consequences, if it is causing excessive side effects, according to Spindler.

The neurostimulator runs on batteries that last three to five years. If a battery needs to be replaced, it can be done with a same-day surgery. The brain electrodes and extension wires that go from the brain to the chest are not changed.

When is the right time to talk to your physician about deep brain stimulation? Some medical experts suggest patients with Parkinson’s disease initiate the conversation as soon as possible.

They say if a patient waits until medications have no effect, DBS may no longer be an option. www.BusinessWomanPA.com

Music – The Benefits to Persons with Dementia

By CLAY JACOBS Research suggests that listening to or singing music can provide emotional and behavioral benefits for people with Alzheimer’s disease and other types of dementia.

Musical memories are often preserved in Alzheimer’s disease sufferers because key brain areas linked to musical memory are relatively undamaged by the disease.

For example, music can: • Relieve stress • Reduce anxiety and depression • Reduce agitation Music can also benefit caregivers by reducing their anxiety and distress, lightening the mood, and providing a way to connect with loved ones who have Alzheimer’s disease — especially those who have difficulty communicating.

All these reasons led a group of volunteers in Mechanicsburg, Pennsylvania, to work with the Alzheimer’s Association – Greater Pennsylvania Chapter to develop the Sing for the Moment Choir.

The Sing for the Moment choir is a community choir that provides an opportunity for people in the early stages of memory loss, as well as their care partners, to enjoy music and socialize with other people living with Alzheimer’s.

Although the focus of the choir is social interaction, participants also benefit from the wellness aspects of singing, such as reduced stress and improved mood. No musical experience is necessary, but screening and registration are required.

“In Pennsylvania, there are more than 400,000 people with a dementia diagnosis. Despite this widespread impact, there are often challenges in communities for people in the early stages of the disease to access care and support as well as participate in supportive social activities,” says Clay Jacobs, vice president of programs and services for the chapter.

“Working with the Sing for the Moment Choir is a highlight of my week.

Through the interactions that I am able to have with the participants, I am reminded not to take myself too seriously — to live in the moment. I can only hope that, through making music together, they find the same joy that they impart to me,” says choir director Rachel Cornacchio.

As this group looks ahead, there will be more sessions occurring regularly, and recruiting new participants is key to ensuring the group is vibrant and continues to be an engaging resource.

“We are having a great time and can’t wait for more people to join us,” Cornacchio said.

The choir recently presented a concert at Bethany Village in Mechanicsburg.

For more information about how to join or upcoming concerts, www.visit alz. org/pa or call 800.272.3900.

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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 Area Agency on Aging for particular services or programs.

What is the Pennsylvania Patient Assistance Program Clearinghouse?

Under the Department of Aging, this program works to provide qualified patients the opportunity to reduce the cost of some medicines.

To qualify, you must be a Pennsylvania resident; must not take part in any other state or federally funded drug program; and have little or no drug coverage (which may include patients who reach the Medicare Part D coverage gap). Call 800.955.0989 for more information.

What is an adult daily living center?

Adult daily living centers provide social, recreational, therapeutic, and nutritional support for older Pennsylvanians. They are inspected at least annually by the Pennsylvania Department of Aging and provide core services, including personal care, nursing services, therapeutic activities, social services, nutritional and therapeutic diets, and emergency care. To learn more about the adult daily living centers, call your local office of aging.

Are there any housing programs that would provide financial relief for older Pennsylvanians?

The Property Tax/Rent Rebate Program benefits eligible Pennsylvanians age 65 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.

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Do the counties within Pennsylvania offer any kind of transportation program, either for day-to-day activities or to essential appointments?

Pennsylvania Free Transit Program Pennsylvania individuals age 65 and 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 senior citizens transit identification card, which is available free of charge from participating operators.

To learn more, call 717.783.3151.

Shared-Ride Program For older Pennsylvanians, the sharedride program enables senior citizens 65 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 must be at least 65 years of age and be able to supply one of the eligible proofs of age to their local shared-ride provider. Usually a 24- to 48-hour reservation is required.

For more information, visit www.dot7. state.pa.us/transitmap.

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 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. See page 20 for more details.

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.

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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.

Prescriptions: co-pay for generic, $6; co-pay for single-source brand, $9.

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, 2018, PACENET cardholders not enrolled in a Part D plan will pay a $37.18 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.

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 www.BusinessWomanPA.com

a Medicare private drug plan. See www. medicare.gov for more information.

Is there any dental services assistance?

Some members of the Pennsylvania Dental Association provide dental care to older adults at reduced fees of at least 10 percent. Visit www.padental.org to access its “Find a Member Dentist” section, which contains information on dentists in your area who offer discounts to older adults.

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 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 www.BusinessWomanPA.com

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 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.

What is the waiver program offered through the Pennsylvania Department of Aging?

There are several waivers available through the Pennsylvania Department 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) • Nonmedical transportation • Personal emergency response (PER) system • Respite care services (temporary caregiver relief) What are the recommended immunizations for adults 65 and older?

• Influenza (flu) vaccine – Recommended for all adults annually, early in the fall.

There are several different vaccines available. Please discuss with your physician which is the correct vaccine for you.

• Tetanus, diphtheria, and pertussis (Td/ Tdap) – Receive the booster every 10 years.

• Herpes zoster – Prevents shingles for those 60 years and older; one dose only is needed.

• Pneumococcal vaccine – Lessens your chance of getting pneumococcal pneumonia or lessens the severity of pneumococcal pneumonia if you do become ill. There are two vaccines; please discuss with your physician which is the correct vaccine for you.

• Other immunizations or boosters, such as measles, mumps and rubella; meningococcal; or hepatitis should be considered in special situations, including travel.

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Is Your Blood Pressure Too High?

By JIM MILLER What numbers constitute high blood pressure? I use to be pre-hypertensive, but they keep changing the guidelines, so I’m not sure where I fit in now.

– Approaching 60 Dear Approaching, If you’re unsure what your blood pressure levels should be, you’re not alone. Recent changes in the hypertension guidelines made by the American Heart Association and the American College Cardiology mean that roughly 30 million more Americans than previously thought are now considered to have high blood pressure (hypertension).

According to the new guidelines, anyone with a blood pressure reading above 130/80 is considered to have high blood pressure.

Previously, those with a blood pressure reading between 120/80 and 139/89 would have been put in the prehypertension category and wouldn’t have been considered hypertensive until they got to 140/90.

But the new guidelines eliminate the prehypertension category, putting everyone with systolic pressure readings (top number) between 120 and 129 and a diastolic reading (bottom number) below 80 in a new “elevated” category. And those with a reading of 130/80 or higher fall in some stage of hypertension.

Here’s a complete rundown of the five new category blood pressure ranges: Normal: A top number less than 120 and a bottom number less than 80.

Elevated: A top number between 120 and 129 and a bottom number less than 80.

Stage 1: A top number between 130 and 139 or a bottom number between 80 and 89.

Stage 2: A top number of 140 or higher, or a bottom number of 90 or higher.

Hypertensive crisis: A top number over 180 or a bottom number over 120.

Get Checked Millions of Americans with high blood pressure don’t know they have it because it usually has no outward signs or symptoms. But high blood pressure, over time, can damage your arteries and increase your risk for heart disease, stroke, kidney damage, and even dementia.

To guard against this, everyone over the age of 40, as well as those younger with risk factors for hypertension, should get 16

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their blood pressure checked at least once a year.

If you find that your blood pressure numbers fall in the “elevated” category, you should take steps now to get it under control. Lifestyle changes — such as eating a healthy diet, losing weight, exercising, watching your salt intake, quitting smoking, and cutting back on alcohol — are often all you need to get it back to normal.

Even if your blood pressure numbers are in the “stage 1” category, lifestyle changes are recommended first, unless you’ve had a heart attack or stroke or you’re at high risk for cardiovascular problems because you smoke or have high cholesterol or Type 2 diabetes. Then medications may be prescribed.

But if your blood pressure falls in the “stage 2” or higher category, the new guidelines suggest medication, regardless of age, plus lifestyle changes.

There are several different kinds of drugs used to lower blood pressure. It usually makes sense to start with the oldest,

safest, and least expensive drug: diuretics, or water pills, such as chlorthalidone or hydrochlorothiazide.

But these meds can drive up blood sugar levels, so if you have Type 2 diabetes or are at risk of it, your doctor may prescribe another drug, such as an ACE inhibitor, ARB drug, or calcium channel blocker.

You should also be aware that blood pressure drugs could cause side effects, including dizziness, gastrointestinal problems, fatigue, and headaches. They can also cause a decline in kidney function, so make sure your doctor periodically monitors your potassium levels.

For more information, see the American Heart Association’s comprehensive webpage on high blood pressure at www.heart. org/HBP.

Jim Miller is a contributor to the NBC Today show and author of The Savvy Senior book.

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/Coaching 717.510.1556 | coach@messiahlifeways.org

Support Groups | Workshops | Free Coaching | Adult Day | At Home Services | Respite www.BusinessWomanPA.com

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Help with Home-Care Bills

By JIM MILLER

nonmedical home care, home healthcare, and other in-home support services.

These programs, often referred to as home- and communitybased services, are state-specific and their eligibility and benefits will vary. To find out if your mom is eligible, contact her state Medicaid agency (see www.medicaid.gov).

Do you know of any resources that can help with my mother’s home-care bills? Mom is recovering from a stroke and needs inhome care, but I understand Medicare doesn’t cover it, and she doesn’t have long-term care insurance.

– Stressed-Out Daughter Dear Stressed-Out, Depending on your mom’s circumstances, there are a number of government and notfor-profit programs that can either subsidize or pay for your mom’s home care or offer aid in other ways. Here’s where to look for help.

Medicare Coverage If your mom is recovering from a stroke, the first thing you need to know is that Medicare does cover a variety of in-home healthcare services.

To be eligible, your mom must be “homebound,” and her doctor will need to approve a “plan of care” confirming that she needs skilled-nursing care or skilled-therapy services from a physical or speech therapist.

Her doctor can also request the services of an occupational therapist and a nonmedical home aide to assist with activities of daily living, such as bathing, dressing, and using the bathroom.

But, be aware that Medicare will not pay for nonmedical home aide services alone if your mom does not need skilled-nursing or skilled-therapy services too. Homemaker services, such as shopping, meal preparation, and cleaning, are not covered either.

For more information, visit Medicare.gov’s page on coverage (www.medicare.gov/coverage/home-health-services.html).

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• Be age 55 or older • Meet the level of care needed for a skilled nursing facility or a special rehabilitation facility • Meet the financial requirements as determined by your local County Assistance Office or be able to privately pay • Reside in an area served by a LIFE provider

Medicaid Options If your mom’s income is low enough, she may qualify for Medicaid, which offers different programs that can pay for

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State Programs If your mom doesn’t qualify for the Medicare or Medicaid options, check to see if her state offers any state-funded homecare programs. These programs may provide caregivers or vouchers that can help pay for care. To find out about these services, call the area agency on aging near your mom or call 800.677.1116 for contact information.

Investigate the LIFE program (Living Independence for the Elderly), nationally called the PACE program. It is called LIFE in Pennsylvania because we have a different program already named PACE, which is for prescription drugs.

LIFE provides in-home care, including help with activities of daily living, such as meals, dental and medical care, prescriptions, and chaperoned transportation, among other benefits. Eligible applicants must:

• Be able to be safely served in the community as determined by a LIFE provider

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Medicaid-eligible patients get LIFE for free, but if your mom is not eligible for Medicaid, she may be charged a monthly premium, though far less than she would pay a private service.

To see if LIFE is available in your mom’s area, visit the Department of Human Services’ website (www.dhs. pa.gov) and type “LIFE program” in the search box.

Veterans Benefits If your mom is a veteran or a surviving spouse of a veteran, the VA also offers some benefits that can help pay her inhome care.

One is “Aid and Attendance or Housebound Allowances,” which are supplemental monthly benefits for veterans already receiving a monthly VA pension and requiring healthcare.

Veterans and surviving spouses qualify if they have certain disabilities or need help with activities such as dressing, bathing, and feeding, among other criteria. Go to the VA’s pension benefits page (www.vets.gov/pension) for more information.

Another option is the “VeteranDirected Care” program. This program provides as much as $2,000 a month that can be used to pay a professional or family member or friend for home care.

The program is open to any veteran who meets the criteria, including requiring help with three or more activities of daily living. Visit the “Home and Community Based Services” section at www.va.gov/geriatrics for information.

To look for additional programs in your area that can help pay your mom’s home care, call your local office of aging.

For Love of Family.

Devotion. Compassion. Dignity. When your loved one needs help, join hands with Homeland. We are privileged to offer a continuum of care options and to be part of your caregiving team.

To arrange a family meeting—at no cost or obligation—please call.

A CONTINUING CARE RETIREMENT COMMUNITY

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717-221-7900

HomelandCenter.org Jim Miller is a contributor to the NBC Today show and author of The Savvy Senior book.

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717-221-7890

HomelandatHome.org

A Commitment to Excellence since 1867 caregiver solutions 2018 BUSINESSWoman

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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

Assessment Criteria (Federal and State)

• Assessment of caregiver and care recipient needs • Respite care • Financial assistance to purchase supplies or services • Limited funding for assistive devices and home modifications • Benefits counseling on services available through local, state, and federal programs • Referrals to family support or disease-specific organizations such as Children of Aging Parents or the Alzheimer’s Disease & Related Disorders Association • 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 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.

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

** 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.

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.

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State No**

Caregiver must reside in the same household as care receiver.

• Training in caregiving skills

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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 care given to people over the age of 60 or adults with chronic dementia.

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.

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Conversations Focus on Death and Dying at Death Cafés

By ROCHELLE A. SHENK The two words death and café may seem like they don’t belong together, but with the emergence of death cafés in recent years, they do. Death cafés are places where people gather to drink coffee or tea, eat cake, and discuss death.

There’s no charge for admission.

“It’s a discussion group where people can talk about death in a relaxed setting. It’s a difficult subject that we don’t talk much about. Sometimes it’s easier to talk to strangers about death than it is with your own family — there’s no judgment,” explained Brian Long, head coordinator of Berks Lancaster Lebanon Link to Aging and Disability Resources, which has facilitated a number of local cafés.

“There’s been a stigma around death, but with the opioid epidemic and an increasing number of suicides in our society, more people are touched by death,” added Jennifer Sciore, sales director of independent living and personal care for Lancaster’s Long Community at Highland.

Death cafés are not new. According to the website Death Café (www.deathcafe.com), the concept was first developed by the late Jon Underwood and Sue Barsky Reid in London in September 2011.

It’s based on the ideas of Swiss sociologist Bernard Crettaz. The website indicates that about 6,200 death cafés have been held in 56 countries.

Long said Lancaster Lebanon Link to Aging and Disability Resources has facilitated them in Lancaster, Lebanon, and Berks counties since 2014.

“It’s a group-directed discussion; there is no real agenda. It’s not a support group or therapy session. It’s non-threatening. Initially we met with some resistance about the name ‘death café’ — but that’s what it is,” he stressed.

Although one might think the vast majority of those attending a death café would be older, he said that’s not the case. There’s a wide age range.

“We’ve had people as young as 12 (with parental Continued on the following page www.BusinessWomanPA.com

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Continued from the previous page permission) as well as people in their 80s attend death cafés,” he said.

“When I was young, I was shielded from death; we thought only old people die, but kids today see death.”

About 20 death cafés have been held in the area, and the venues include public libraries, retirement communities, churches, a pub in downtown Lancaster (Tellus 360), and even a funeral home (Charles F. Snyder Funeral Home & Crematory). The Long Community at Highland, Lancaster, has hosted two cafés.

“It’s not a morbid, sad sort of event; it’s uplifting to get together with a small group of people to discuss death,” Sciore said.

Long said the death café is about two hours long, and each one follows the death café organization’s guidelines.

Sciore said about 30 people attended their first meeting, which was held in January 2017 in the Westminster Place Community Room at the Long Community. More than 20 people attended the café held this past March in their dining room.

“We chose two locations to make it convenient for residents in different parts of our community. A lot of our residents are 55 and older and are experiencing death of family, friends, and neighbors.

Some residents did attend each café, but most of the people who attended were from outside our community,” she explained. “We had a mix of age groups — some were in their 20s, but most were in their 50s.”

Death cafés are meant to be intimate. There’s an introduction.

“We let people know what to expect,” Long said.

Then, people are divided into small groups of six or eight. Each group has a facilitator to keep the conversation on track — topics such as politics are not discussed.

“We start the conversation by each person introducing themselves and why they are here, and it goes from there,” he explained.

Long added that at one death café a couple from England, who had attended a death café over there, stopped by.

“Every death café is different — the conversation is different. But there’s always cake; I think that stems from the British heritage,” he said.

Since the LINK organization has facilitated a number of death café events, Long said they’ve created data sheets based on frequently asked questions. Some of those questions include body donation; backyard burials and methods of burial, including cremation; ghosts; and costs of funerals. There’s also a lot of resource material for people to read and take home.

“We also encourage people to continue the discussion and talk about death with their families,” he said.

For more information about death cafés, visit www.deathcafe. com. For information about local death cafés, visit https:// berkslancasterlebanonlink.org and click on a county near you.

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Is it Time to Get Help?

Don’t Try to Go it Alone concern about your stress level.

By LISA M. PETSCHE If you are looking after an aging relative, chances are good that a time will come when you need help to manage all of their needs.

Many people are aware of the signs that a loved one needs help looking after their day-to-day needs; difficulty managing medications is one example.

What are not so well known are the signs that a caregiver needs help carrying out the responsibilities involved in their role.

Read on to see if you can relate to any of the following statements.

Your Physical Health • Your own health is being neglected. For example, you’re not eating nutritiously or you’re long overdue for a medical checkup.

• You have a pre-existing mental illness.

• You have a strained relationship with the care receiver.

Caregiver Overload • It’s difficult or impossible to stay on top of household chores and paying bills.

• If you’re employed, you’ve had to take numerous unscheduled days off work to deal with your relative’s needs. Your job may even be in jeopardy.

• Another family member also has special needs and relies on you for assistance.

Other Concerns

• You’re experiencing sleep deprivation because the care receiver needs help in the night or has their days and nights reversed.

• You don’t have any time to yourself.

• You have frequent acute health problems, such as respiratory infections.

• Your relationship with a significant other is strained due to the amount of time you devote to caregiving.

• You have a chronic health condition that’s getting worse.

• You don’t see your friends anymore.

Your Mental Health • You feel overwhelmed or trapped.

• Friends have noticed changes in your personality or expressed www.BusinessWomanPA.com

• Your finances are stretched and you need to return to work or increase your hours if you’re already employed.

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Continued from the previous page Getting Help Informal help involves getting other family members to share the responsibility for caregiving. It’s important to be specific about the kind of help you need.

If relatives live in another area and aren’t able to pitch in, explore whether they’re able and willing to contribute to the cost of hiring help to make caregiving more manageable.

Formal help is the type of assistance offered through community programs and services. In some cases it may be free of charge or subsidized. Check with the local office on aging to find out what’s available.

A prerequisite to seeking help is acknowledging that you can’t — and shouldn’t — do it all alone. Accepting help is not a sign of weakness. On the contrary, it’s a sign of strength and wisdom, because outside help can enable you to be more effective in your role and provide care for a longer period of time than you otherwise might be able to manage.

If people you know have been offering help, take them up on it.

Otherwise, speak up and ask, or do some research about formal support options for your relative, such as Meals on Wheels, friendly visiting, volunteer driver programs, and home healthcare services.

Be sure to also look into caregiver respite services — including adult daycare programs and nursing facilities that offer short-term residential care — and take advantage of them.

You need and deserve a break!

Lisa M. Petsche is a clinical social worker and freelance writer specializing in eldercare issues.

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Medication Safety and Management

By PHILIP D. SLOANE, M.D., M.P.H. Managing medications for a person with dementia can be a tough challenge for family caregivers.

Typically, a family caregiver has to:

• The person may not recognize that the pill in their mouth is medication and needs to be swallowed. If so, ask their healthcare provider or pharmacist if the medication comes in liquid form (about 1/3 of medications do). Other options include dissolvable tablets or a transdermal patch.

• Read the medication label and understand what the medication is for and its directions for use.

If none of these options works and one or more medications is absolutely necessary, see if it can be crushed and mixed with food.

• Make sure each medication is necessary and the dose is correct.

The person’s healthcare provider should review the medication list about every six to 12 months. By stopping unnecessary medications or changing a dose, the person with dementia may be able to take medications less often with fewer side effects.

• Keep an up-to-date list of all medications in an easy-to-find place (like the refrigerator). Be sure this list includes the names of all medications (prescriptions, vitamins, herbals, supplements), the dose, and how and when it is taken.

• Understand the risks, benefits, and potential side effects of each new medication.

• Make sure the person is taking the right medicine at the right time and gets their medications refilled.

• Watch for side effects.

• Understand the risks of medication interactions with foods, supplements, and non-prescription medications.

Start low and go slow when starting a medication is a principle that applies to all older persons and especially to persons with dementia. Older persons tend to be more sensitive to medications and often need less than a young adult. Starting with a low dose helps identify side effects when they are not too severe.

Crushing Pills and Mixing Them with Food Here are some things to know: • Most tablets and caplets can be crushed; however, extendedrelease, timed-release, or enteric-coated medications should not be crushed. If you aren’t sure, ask your pharmacist.

• A pill crusher can be purchased at a drug store. You can also use a mortar and pestle or place the pill in a sandwich bag and hit it with a hammer.

• One you crush the pill into a powder, mix the powder in a small amount of applesauce, pudding, or yogurt (so the person will take the whole thing).

• Many pills are bitter; if so, the person may not want to take it unless the food you mix it with disguises the flavor.

If the person has early dementia and is suspicious or paranoid but generally aware of what’s going on, think twice about crushing pills — you may have more of a problem if they find out.

Excerpted from Sloane’s book, The Alzheimer’s Medical Advisor: A Caregiver’s Guide. See book review on page 26.

If Someone with Dementia Refuses to Take or Has Trouble Swallowing Tablets, Capsules, or Caplets • Talk to the person’s medical care provider about what medications are most important and whether some can be stopped.

• The person may suffer from a dry mouth. Try having them swallow water, juice, or coffee first and see if that helps them swallow their pill. www.BusinessWomanPA.com

Dr. Philip Sloane, a family physician and geriatrician, is a nationally recognized expert in both fields. As a researcher, he was the first family physician in the country to receive an NIH research career development award (1986), and he has been continuously funded by the NIH ever since. He co-directs (with Dr. Sheryl Zimmerman) the Program on Aging, Disability, and Long-Term Care of the Cecil G. Sheps Center for Health Services Research at UNC-CH. caregiver solutions 2018 BUSINESSWoman

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Good Reads Activities to Do with Your Parent Who has Alzheimer’s Dementia

By Judith A. Levy, EdM, OTR CreateSpace www.createspace.com Activities to Do with Your Parent Who Has Alzheimer’s Dementia provides a selection of user-friendly activities that will help maintain your parent’s self-care skills, mobility, and socialization. These tasks encourage success and feelings of self-worth and offer imaginative ways to interact with your parent.

The activity assessment form objectively allows you to look at each of these tasks. It can help to determine the setup and environment that works best with your parent. This written format is a tool that also encourages consistency between caregivers.

In this book you will find: more than 50 activity ideas with implementation suggestions; activity assessment forms; Alzheimer’s dementia support sources; caregiver burnout prevention ideas; definitions of frequently used medical terms; roomby-room safety suggestions; and home and personal safety assessments.

The Alzheimer’s Medical Advisor: A Caregiver’s Guide

By Philip D. Sloane, M.D., M.P.H. Sunrise River Press www.sunriseriverpress.com If you provide care for someone with memory problems or dementia, this book is for you. The Alzheimer’s Medical Advisor is based on the latest clinical knowledge and scientific research on the care of people with Alzheimer’s disease and other dementias.

It includes: basic facts about Alzheimer’s disease and other dementias; practical guidance when conferring with doctors and nurses, visiting a hospital or care facility, and during the dying process; tips on taking care of yourself while taking care of someone else; common medical and behavioral symptoms 26

and conditions; and so much more.

The Alzheimer’s Medical Advisor contains more than 50 medical and behavioral conditions that caregivers often address in their caregiver journey. Each condition is presented in an easy-to-follow, two-page guide that provides basic facts; signs that indicate a possible emergency; and practical guidance.

Caregiver Burnout (Caring for Aging Parents)

By Edie Dykeman Amazon Digital Services LLC www.amazon.com Edie Dykeman moved in with her then 83-year-old father in September 2006.

Legally blind and colorblind since birth, he not only struggled with decreasing eyesight, but also with side effects of diabetes. Since the move he was also diagnosed with Alzheimer’slike symptoms.

In the years since she became the only caregiver for her father, Dykeman experienced several situations that led to the type of burnout that can happen to those who provide fulltime care for the elderly.

In Caregiver Burnout, Dykeman shares her story about what led to the burnout and how she has not only wrestled with but conquered the devastating health issues that resulted from the experience.

The lessons she learned has left Dykeman much better equipped to handle the daily challenges presented to her. Caregiver Burnout is not a negative book. It is one of encouragement and practical suggestions for caregivers of the elderly, especially those who are caring for someone with dementia.

The Caregiver’s Toolbox: Checklists, Forms, Resources, Mobile Apps, and Straight Talk to Help You Provide Compassionate Care

By Carolyn P. Hartley and Peter Wong Taylor Trade Publishing www.rowman.com/taylortrade

BUSINESSWoman caregiver solutions 2018

Millions of Americans are or will be amateur caregivers for ill spouses, parents, or friends. Caregivers today, more than ever, use technology to help manage schedules, medication routines and pharmacy reminders, legal and financial affairs, as well as travel and expenses. Yet recent insurance options and healthcare’s emerging digital world make for an overwhelming, complex process.

Could you access your parents’ critical documents in an emergency using their user IDs and passwords? Do you know how often your parents or parents-in-law are taking medications, how often your loved one goes to the doctor, and how to be involved in medical and life decisions?

Statistics show 85 percent of caregivers are not trained in caregiving, so many people are likely winging it, picking up pieces of information here and advice there.

The Caregiver’s Toolbox is your guide to cool apps and online tools, insider tips on how to reduce your medical bills, your privacy rights as a caregiver, where to go for free and low-cost help, and much more. It clearly shows which tools will relieve your stress and those that may add stress.

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stories of Caregiving, Coping, and Compassion

By Amy Newmark and Angela Timashenka Geige Chicken Soup for the Soul www.chickensoup.com Caring for a loved one with Alzheimer’s or another form of dementia? You are not alone.

With 101 encouraging and inspiring stories by others like you, this book is a source of support and encouragement throughout your caregiving journey.

Alzheimer’s disease and other forms of dementia affect millions of people, and this book is especially for caregivers. This collection, a joint project with the Alzheimer’s Association, is filled with 101 stories of love and lessons from others like you and will support and encourage you as you care for your loved one. www.BusinessWomanPA.com

A Guide for Caregivers

By Benjamin Pratt Amazon Digital Services LLC www.amazon.com In 1 out of 3 households, someone is a caregiver: women and men who give of body, mind, and soul to care for the well-being of others.

These millions need help, but more than financial and medical assistance. They need daily, practical help in reviving their spirits and avoiding burnout.

Who are these caregivers? They are folks who have lived this tough life and felt the agonies and the boredom, yet they have extended compassion with a gentle word or a tender touch. As caregivers, they know anger, frustration, joy, laughter, purpose, mortality, and immortality.

This book is drawn from the wisdom of many caregivers and has taken their advice: these are short, easy-to-read sections packed with wisdom and practical help! This book is designed to let readers jump in almost anywhere and explore at their own pace.

Considering the millions of people worldwide who are caregivers, this book also is great for small-group study.

Home Hospice Navigation: The Caregiver’s Guide

By Judith R. Sands, RN, MSL, BSN, CPHRM, CCM, CPHQ, LHRM, ARM CreateSpace Independent Publishing www.amazon.com Home Hospice Navigation is a comprehensive and practical, tip-filled resource. The book provides caregivers with clear and concise caregiving information to navigate the healthcare maze.

Home Hospice Navigation takes the guesswork out of caregiving and is intended for caregivers dealing with the home hospice journey. It also benefits those whose loved one is declining with a chronic illness.

www.BusinessWomanPA.com

Living with Dying: A Complete Guide for Caregivers

By Katie Ortlip, LCSW, and Jahnna Beecham Starcatcher Press www.livingwithdying.com This easy-to-use guide for caregiving instructs you on how to: • Have the conversation • Navigate the emotional and spiritual journey • Control pain • Address symptoms • Work with hospice • Care for yourself • Get your loved one’s affairs in order “When losing a loved one, we are at a loss: How do we talk about it? How do we make business and financial plans? How do we face the final hours? This book is the one book we need: respectful, experiential, richly researched, and joyful.” – Barbara Brownell Grogan, former editor-in-chief, National Geographic Long-Term Care: How to Plan & Pay for It

By Joseph Matthews, Attorney NOLO www.nolo.com Finding the right long-term care often means making difficult decisions during difficult times. Whether you’re planning for the future or need to make a quick decision, Long-Term Care helps you understand the alternatives to nursing facilities and shows you how to find the best care you can afford.

• Choose a nursing facility • Get the most out of Medicare, Medicaid, and other benefit programs • Protect your assets • Recognize and prevent elder fraud This completely updated edition includes an expanded discussion of Medicaid coverage, special long-term care insurance, assisted living, and long-term care. Plus, you’ll get upto-date benefit numbers, laws and taxes, and revised information on veterans’ benefits.

The Practical Caregiver’s Guide to Home Hospice Care

By Sara Barton Amazon Digital Services LLC www.amazon.com Are you a caregiver for someone who needs home hospice, unsure of what your job is for your loved one at the end of life?

The Practical Caregiver’s Guide to Home Hospice Care will help you understand how to take care of not only your loved one, but also yourself. Make the care you provide fit the real needs of the person needing help.

With Long-Term Care, you’ll be able to: • Evaluate long-term care insurance • Arrange home care • Explore options beyond nursing homes

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Directory of Housing & Care Providers 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 on page 24

Colonial Lodge Community 2015 North Reading Road Denver, PA 17517

Comfort Keepers 7A North Clover Lane Harrisburg, PA 17112

Homeland Center 1901 North Fifth Street Harrisburg, PA 17102

Life Time Adult Day Care 3 Crossgate Drive Mechanicsburg, PA 17050

717.975.9762 jzarker@cparc.org www.cparc.org

Providing daytime compassionate care and support to participants and their caregivers. Helping participants be as independent as possible while remaining in their own community.

717.336.5501 harry@coloniallodgepa.com www.coloniallodgepa.com

717.920.9898 ckharrisburg@comcast.net www.comfortkeepers.com

717.221.7900 bramper@homelandcenter.org www.HomelandCenter.org

Homeland Center, a continuing care retirement community, offers beautiful personal care suites, skilled nursing, rehabilitation, and dementia care. Our community outreach programs serve 14 counties throughout south-central Pennsylvania and include Hospice, HomeHealth, and HomeCare.

See ad on page 19

Homeland Hospice, HomeHealth, 717.221.7890 and HomeCare info@homelandathome.org 2300 Vartan Way, Suite 270 www.HomelandatHome.org Harrisburg, PA 17110 Homeland at Home is a community outreach of Homeland Center, providing a continuum of At Home care services—from non-medical personal assistance to skilled nursing, as well as compassionate palliative and hospice care.

See ad on page 19

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 on page 17

Pleasant View Retirement Community 717.665.2445 544 North Penryn Road info@pleasantviewrc.org Manheim, PA 17545 www.pleasantviewrc.org As a nonprofit Life Plan Community, Pleasant View brings together the very best in faith-based living and modern health care with a full range of living options.

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

717.334.4443 jkeefer@spiritrustlutheran.org www.spiritrustlutheran.org

Color Key For Directory of Caregiving Providers Independent Residences Personal Care Home Assisted Living Residence Dementia Units Nursing Care Community 28

BUSINESSWoman caregiver solutions 2018

Rehabilitation Facility Respite Care Adult Day Center Home Care Services Hospice Care

www.BusinessWomanPA.com

Directory of Housing & Care Providers SpiriTrust Lutheran, The Village at Kelly Drive 750 Kelly Drive York, PA 17404 See ad on the back page

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

717.854.5010 jgochoco@spiritrustlutheran.org www.spiritrustlutheran.org

VIBRALife 707 Shepherdstown Road Mechanicsburg, PA 17055

717.591.2102 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 on page 5 717.261.1251 edoub@spiritrustlutheran.org www.spiritrustlutheran.org

717.235.5737 pmitchell@spiritrustlutheran.org www.spiritrustlutheran.org

717.764.9994 hbair@spiritrustlutheran.org www.spiritrustlutheran.org

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 on page 13

Visiting Angels 4607 Locust Lane Harrisburg, PA 17109

717.652.8899 717.737.8899 visitingangelshbg@comcast.net www.visitingangels.com

Color Key For Directory of Caregiving Providers 717.637.0633 lsterner@spiritrustlutheran.org www.spiritrustlutheran.org

Independent Residences Personal Care Home Assisted Living Residence Dementia Units Nursing Care Community

Rehabilitation Facility Respite Care Adult Day Center Home Care Services Hospice Care

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.

www.BusinessWomanPA.com

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

See ad on this page

610.344.6350 717.240.6110 717.780.6130 717.299.7979 717.273.9262 717.771.9610 www.p4a.org

Complementary Assistance Cumberland County Aging and Community Services 1100 Claremont Road Carlisle, PA 17015

717.240.6110 aging@ccpa.net https://www.ccpa.net/119/AgingCommunity-Services

Provides service coordination for LTSS (Long-Term Services and Supports) Waiver Program participants in Cumberland, Perry, and Dauphin counties.

Lancaster County Office of Aging Caregiver Support Program 150 North Queen Street, Suite 415 Lancaster, PA 17603

717.299.7979 800.801.3070 aging@co.lancaster.pa.us www.lancoaging.org

The Caregiver Support Program provides caregivers with benefits counseling and reimbursement for related expenses and home modifications.

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, Elizabethtown, and Strasburg.

Transportation Services rabbittransit Serving 10 counties

800.632.9063 info@rabbittransit.org www. rabbittransit.org

Dauphin County Area Agency On Aging 717.780.6130 2 South Second Street info@dauphinc.org Harrisburg, PA 17101 www.dauphincounty.org Dauphin County Area Agency On Aging provides services to older adults who reside in Dauphin County and are age 60 or older.

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).

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BUSINESSWoman caregiver solutions 2018

www.BusinessWomanPA.com

— 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 CareCentral www.carecentral.com

National Library Service for the Blind & Physically Handicapped 888.657.7323 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

Pennsylvania Department of Human Services 800.692.7462 www.dhs.pa.gov

RxAssist www.rxassist.org

Medicare Telephone Hotline 800.633.4227 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 877.356.5355 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

www.BusinessWomanPA.com

PACE/PACENET 800.225.7223 www.aging.state.pa.us/aging

Rural Information Center 800.633.7701 www.nal.usda.gov/ric

Medicare Rights 800.333.4114 www.medicarerights.org

National Council on Alcoholism & Drug Dependence, Inc. 212.269.7797 www.ncadd.org

Crohn’s and Colitis Foundation of America, Inc. 800.932.2423 www.ccfa.org

Office of Minority Health Resource Center 800.444.6472 www.minorityhealth.hhs.gov

Shriners Hospital for Children Referral Line 800.237.5055 www.shrinershospitalsforchildren.org Simon Foundation for Continence 800.237.4666 www.simonfoundation.org

National Institute of Mental Health Information Line 866.615.6464 www.nimh.nih.gov caregiver solutions 2018 BUSINESSWoman

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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 Lutheran® 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

Call us to learn more or schedule a personal tour.

888-404-3500 • www.SpiriTrustLutheran.org

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