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Parkinson’s Disease:Caring and Coping

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By:

Susan Imke, RN, MSFt. Worth, Texas

Trudy Hutton, JDLubbock, Texas

Sheree Loftus, RN, MSNNew York City, New York

ABOUT THE AUTHORS ..

Susan Imke, RN, MS, is an advanced nurse practitioner holding dual certification by the American Nurses Association in family healthcare and gerontology. In addition to her nursing education, she earned a Master of Science Degree in Community Health Education from The University of North Texas. lmke serves as an educational consultant to the National Parkinson Foundation, and is the N PF liaison to the American Dietetic Association. She has authored numerous publications and lectures widely to healthcare professionals and support group audiences. Susan lives with her husband Frank and maintains a clinical practice in Ft. Worth, Texas.

Sheree Loftus, RN, MSN, is an advanced practice nurse, certified in gerontology by the American Nurses Association and in rehabilitation by the Association of Rehabilitation Nurses. She earned her Bachelor of Science Degree in Biology and Nursing at Worcester State College and a Master of Science in Nursing at Anna Maria College in Paxton, MA. Loftus completed the Consortium in Gerontology Studies Program at University of Massachusetts Medical School, and continued her education at Cornell Medical College (NYC), obtaining certification as a gerontological nurse practitioner. Loftus is widely recognized as a Parkinson's disease educator, author and researcher, including serving as an investigator in the Datatop Study. Sheree is the Patient Services Coordinator at the NPF Center of Excellence at Beth Israel Medical Center in New York City.

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FOREWORD & ACKNOWLEDGEMENTS ..

Early in 1998, the NPF Board of Directors appointed an Education Task Force, whose primary charge was to create innovative educational materials to meet the needs of patients and families living with Parkinson's disease. Parkinson's Disease: Coping and Caring is the final addition in a series of six comprehensive manuals. Manual talented individuals have contributed to its content and revisions.

First of all, our gratitude goes to NPF Chairman Nat Siewett, whose VISion and generosity have made the project possible. Thanks also to members of the task force, for their candid contributions and sustained efforts:

• Gloria Bock, Milwaukee, WI • Glenna Dowling, San Francisco, Ca • Ruth Hagestuen, Minneapolis, MN • Christine Hunter, Houston, TX • Gale Kittle, Phoenix, AZ • Deb Michalek, Kansas City, KS • Jane Wright, Philadelphia, PA

Thank you to Julie Carter, Frank Imke, for reviewing the manuscript and lending your insights. NPF is indebted to Denise Brown, Maria Meyer, and Suzanne Mintz for allowing us to adapt us to adapt segments from their respective publications. The artistic genius and attention to detail guarantees an attractive layout and "just right" graphics for the manuals. Most of all, thank you to Julian Pearson, senior editor for all NPF publications, whose coaching and counsel always ensures that the "job gets done".

For the authors, this manual represents a labor of love and a keen appreciation for the collective courage and commitment found in the greater Parkinson community.

Susan C. Imke Chairperson NPF Education Task Force

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A FRESH PERSPECTIVE by

Chaplain Chuck Meyer St. David's Medical Center - Austin, Texas

Reprinted with permission

I was awakened the other morning by fighter jets strafing my house on their way to Bergstrom (AFB) at 5:30 a.m. (Couldn't they practice blowing up the world after eight o'clock on the weekend?)

As the house and my teeth rattled at the 6.4 Richter Scale noise, it suddenly occurred to me that we might have this health care image all wrong. If it is true (as I believe it is) that imagery sets the tone for events, then it is not surprising that medicine is beset with conflicts, since it is based on the image of warfare.

When illness occurs we talk about "bringing in the troops", "doing battle" with the disease, "fighting hard" and "not giving up". In healthcare, we talk about "rationing resources", "lifeboat allocation" and "triage". When a patient dies, we say their "battle is over" and the person is "finally at peace". Sulfa drugs were originally referred to as "the magic bullet".

All this military and warfare imagery assumes a stance of defensiveness and/or aggressiveness can lead to hastily drawn battle lines and pecking orders: it sets up a winlose scenario demanding victory or defeat with disability and death as the enemies. No wonder national healthcare costs look like the defense budget! No wonder patients report feeling like a battleground with disease attacking from the inside and health professionals attacking from the outside.

There are other models. What would happen, for instance, if we changed our image from warfare to seeing healthcare as a collaborative art? In this model, the patient (first), family, health care workers (nurses, physicians, therapists), and social support (clergy, agencies, volunteers) would all engage in the collaborative art of healing.

One imagines a lot of talking in this model, taking more time to communicate about the entire person and family, perhaps accepting death when the time comes as an option (at times even a hopeful, desirable one). The team is seeking goals of comfort, dignity, and healing life-styles. One also imagines a lot of touching, laughing and crying in this model, done by every member of the artistic team.

It is important to realize that our image of illness is a relatively recent one. A friend of mine who lived with pygmies for a year said their image of disease is not the invasion of a destructive power (like ours), but rather the withdrawal of positive power from the person.

The reason s/he is sick is that positive power has left the body. Thus it is the job of the shaman (priest/physician) to go and retrieve it and return it. If the person dies the shaman is responsible to help send the soul to the place where the positive power went.

Healing as warfare or collaborative art? What we see is what we get.

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CONTENTS •

Chapter 1 - Parkinson Partners 7

Chapter 2 - The Extended Family ........................••........... 15

Chapter 3 - Activities of Daily Living 27

Chapter 4 - Taking Care of Business 41

Chapter 5 - BuBding a Support Network ...•...•••••............. 53

Appendix A - Caregiver Glossary ................................•................. 63

Appendix B - Reference library 68

Appendix C - Health Agencies & Community Resources 70

Appendix 0 - Internet Websites 72

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PARKINSON DISEASE: CARING AND COPING

r---......--- '"""-_. .....

Help Wanted loolliollo! 3 Gi3118018?

Need mature, responsible individual to care fo elderly gentleman with chronic health condition.

Must perform as patient advocate, nurse, counselor, activity director anf financial manager.

Position requires experience giving medications, doing laundry, cooking and housekeeping. Prefer licensed

driver also willing to do yard work and light maintenance chores.

Hours Round-the-Clock, 7 days per week

Compensation Room and board, satisfaction of a job well done,

hugs (optional). Sorry, no salary or benefit package available at this time.

Job Classification

Caregiver

6

•

CHAPTER 1

PARKINSON PARTNERS

Caregiving - Precise definition of the concept remains elusive, despite growing numbers of people serving in the role of caregiver and popularization of the term. We care for the welfare of loved ones; we give care to someone unable to attend to his or her own needs; we admonish one another to take care. But becoming a caregiver for someone with chronic neurological disease takes on new meaning and implications.

Although much of the information presented in this manual will be of interest to people who themselves have Parkinson's disease (PD), the content is tailored for family members who serve as primary care partners for people with PD. The National Parkinson Foundation is particularly committed to the welfare and education of the spouses who are courageously serving on the "front lines" of daily caregiving.

FAMILY CAREGIVERS

According to the National Fami Iy Caregivers Association (N FCA), virtually one half of the U.S. population has a chronic health condition. Forty one million AmeriCans, many of them senior adults, have health problems that limit their ability to perform independent activities of daily living. It is estimated that there are 25 million family caregivers: one in four American households includes an adult providing care for someone over 50 years of age. Only 20% of Americans who require long-term care receive it in institutions.

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Family caregivers provide 80% of all home care services. Their unpaid care adds up to more than $194 billion a year, forming a vital safety net for our country's already overburdened healthcare system. The Department of Labor reveals that American businesses lose between $11 billion and $29 billion each year due to employees' need to care for elder family members. Fifty-nine percent of the adult population either is or expects to be a family caregiver. Three-fourths of all caregivers are women between the ages of 35 and 64.

N FCA defines "heavy duty" caregivers as those providing in-home care more than 20 hours per week. Many of these, especially spousal caregivers, do not get consistent help from other family members; it is estimated that as many as three fourths of these caregivers are "going it alone".

People over 85 years of age are the fastest growing segment of the population, half of whom need some help with personal care. The number of older people needing long-term care is expected to reach 14 million by the year 2020. Ironically, this "graying of America" phenomenon is producing an unprecedented

demand for family caregivers, while the pool of family caregivers is simultaneously dwindling. Adult children often live long distances from aging parents, and the trend continues for women in mid life, who have traditionally been the elder caregivers, to be in the workforce.

PROFILE OF PARKINSON'S DISEASE

It is estimated that 1.5 million persons in the U.S. have Parkinson's disease (PO), approximately 2% of adults over age 60. Most people are diagnosed in their 50's or 60's, although 10% are classified as "young onset", diagnosed prior to age 40.

The etiology (cause) of this chronic neurological disorder remains a mystery. James Parkinson, a London physician, first described the syndrome in 1817 as the

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"shaking palsy". Parkinson's disease results from a deficiency of dopamine, a neurotransmitter (chemical messenger) produced in the midbrain region called the substantia nigra. Early symptoms are typically unilateral (present only on one side of the body). Both symptoms and rate of progression vary from person to person.

Signs and symptoms of Parkinson's disease include:

• Bradykinesia - profound slowness of movement • Resting tremor - shaking, worse on the affected side • Rigidity - marked stiffness, worse on the affected side • Decreased arm swing on the affected side • Problems with walking and balance - may experience a shuffling gait

or episodes of "freezing", being unable to initiate a step forward • Micrographia - small, cramped handwriting • Masked face - reduced facial expression • Dysarthria - lower volume or husky quality to the voice • Impaired manual dexterity • Depression, anxiety or other mood disorder • Some people fatigue easily and have increased

PD symptoms in response to external stress.

COMMON REACTIONS

TO THE DIAGNOSIS

Individuals dealing with chronic neurological illness often experience myriad feelings and reactions to a diagnosis that is "not going away". Most people define themselves as "patients" only during acute, self-limited illness or injury that temporarily impacts their lives as an inconvenience or discomfort. The reality of a chronic (ongoing) health condition presents entirely different and challenging adjustments for the patient, family members, and friends.

Coordinator at the Struthers Parkinson's Center in Minneapolis, describes a common response to the diagnosis as being in a state of

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"overwhelm". Feelings of emotional numbness, disorientation, and fragmentation may be literally overwhelming for a period of time, and can recur periodically as the individual and family learns to cope with chronic illness.

In addition to coping with his or her own responses to the diagnosis of PD, the now-designated patient must deal with the responses of loved ones, employers and co-workers, and if symptoms are obvious, with the reactions of total strangers. This can trigger feelings of disbelief, resentment, worry about prognosis, financial insecurity. and profound sadness.

Some people also report feelings of relief upon learning the diagnosis, since many have been through extended and anxiety-provoking medical work-ups in search of an accurate diagnosis to explain their symptoms.

An individual's personality and coping style contributes to the nature of his or her adjustment to living with a chronic condition. Denial is often the first response to the initial diagnosis. Surprisingly. this can be a relatively healthy coping mechanism if the ability to ignore minor symptoms provides sufficient energy for the patient to carry out his or her daily routine. Most people in the early years with PD do not require assistance with self-care activities or routine chores. An occasional assist with buttons or getting an arm into the coat sleeve may suffice. If denial escalates to the point of refusing necessary medication or taking unwise risks to overcompensate for physical disabilities. it then becomes a maladaptive or unhealthy response.

SPOUSE AS CARE PARTNER

Just as the patient has a unique personality, so does the spouse or other primary caregiver. Some spouses respond to symptoms in the Parkinson partner by becoming overprotective; some join in the denial and attempt to ignore or explain away symptoms and functional limitations. The diagnosis of PD in the family can cause a shift of power in a couple's relationship, requiring adjustments as circumstances change. These changes may unfold smoothly or may present a so~rce of strife, depending on pre-existing family dynamics and whether the disease affects a currently employed breadwinner.

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Psychologists note that most healthy marriage relationships incorporate a degree of personal independence with an interdependence between the partners, best described as a model of sharing or mutuality. Less healthy marriage styles include:

• A mirroring model in which the spouses are often inseparable, without interests apart from each other.

• An authoritarian, satellite model in which family activity and concern all revolves around one person like the spokes of a wheel.

• A marriage-of-convenience model in which the individuals co-exist, deriving a measure of companionship and economic benefit without strong bonding.

If the sharing model exists, communication and reciprocal understanding can usually overcome typical conflicts, without unduly increasing either guilt or resentment. The other models are less able to adapt to the pressures of living with chronic illness.

Susan Caine, RN, a nurse clinician at the N PF Center of Excellence at the University of British Columbia, observes from her years of teaching and practice that gender can factor into how spouses adapt to the task of caregiving. Oftentimes a woman has shouldered the greater responsibility for child rearing and possibly helping nurture grandchildren as well. Plus, she may have already served dutifully, caring for her own and/or her husband's parents.

So the unwelcome news that her life partner may require hands-on care and assistance is likely to be met with a sense of weariness and perhaps, resignation to the added responsibility.

Whereas a man facing the ominous task of caregiving for his mate may well look on it as a challenge ... new skills to learn, proving to himself and others that he is up to the task. Caine notes that society seems to expect the wife to assume this role without fanfare, while giving greater support and affirmation to the husband as caregiver. She quips to her lecture audiences: "He earns a round of applause for every tunafish sandwich and load of laundry!"

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Until recently. little research about the responsibilities and needs of spousal caregivers has focused on the Parkinson community. Julie Carter, RN, MN. FNP. at Oregon Health Sciences University in Portland, recently led a team of researchers to study the subject of PD caregiver burden as disease symptoms progressed in their loved ones. ,',

Over 300 spouses of patients with PD at 23 medical centers in the U.S. associated with the multi-center Parkinson Study Group were enrolled in the study.

Not surprisingly. the results of this study revealed a strong association between advancing stages of PD and increasing stress and strain on the primary caregiver. In the early stages of the disease. the incidence of stress reported was fairly low. It was noted. however. that caregiver worry increased when symptoms became detectable bilaterally.

Caregivers of spouses with mid-stage disease reported increasing worry. tension. and frustration. They were dealing with communication problems. role conflicts, and some with the burden of providing daily care. By the time the disease reached advanced stages, strain on the caregivers had significantly increased.

The greater caregiver burden noted at later stages of disability with PD included economic woes. lack of resources, feelings of being manipulated. and mismatched expectations. The average number of tasks required of the caregiver doubled in the middle stages of the disease. and tripled by more advanced stages. Increasing demands on caregivers were accompanied by a decline in quality of life and a feeling of decreased control and predictability. This study also noted a great deal of individual variability among caregivers; some spousal caregivers experienced more strain. and some experienced less strain than expected at each stage of the disease. ,',

'~Carter. Julie. et.al. "Living With a Spouse Who Has Parkinson's Disease: The Spouse's Perspective by Stage of Disease". Movement Disorders 13: 20-28, 1998.

The following two pages are reprinted with permission from a survey of caregivers published by the National Family Caregivers Association.

NFCA is a not-far-profit national membership organization striving to make life better for all of America's family caregivers. For more information or

a complete copy of the national survey, contact 1-800-896-3650.

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NFCA MEMBER SURVEY

A Profile of Caregivers In the spring NFCA conducted its first Caregiver Member Survey. The results were illuminating, and professionals and caregivers alike were very interested in the results. This past summer, a second N FCA Caregiver Member Survey was conducted with funding from one of our National Corporate Partners, Fortis Long Term Care Insurance, and technical know-how and logistical support from Fortis subsidiary AdultCare.

There are several factors that make this survey noteworthy. First of all, it had a remarkable response rate of 35%. Secondly, it is one of the very few surveys of caregivers from all across America and all across the lifecycle, thus shedding light on the common aspects among the members of the caregiving population. Thirdly, it is a survey of a group of individuals. many of whom are providing an intense level of caregiving, who have reached out for support. Finally, it is significant because it is a survey of individuals of whom over 60% have been caregiving for five years or more.

Here then is a snapshot view of NFCA's members in the summer based on our first preliminary analysis. Additional information and analysis will be available shortly.

Who We Are: A Brief Synopsis Sex Female 82% Male 18%

Marital Status Married 74% Single 12% DivorcedlWidowed/ 14%

Separated

Age 20-35 years 6% 36-50 years 34% 51-65 years 36% 66-80 years 22% Over 80 years 2%

Where Caregiving is Done Caregiver's Home 80% Care Recipient's Home 8% Nursing Home 6% Assisted Living Facility 2% Other 4%

How Long Have You Been a Caregiver

• Less Than 3 Years • 3-4 Years [] 5-10 Years D 11-15 Years DOver 15 Years

Kids at Home Yes No

230/0 77%

Employed Yes No

47% 53%

Employed Full Time More than 31 hrs/wk 71%jc

jc % of those working

For Whom Do You Care

• Spouse • Child D Parent D Sibling/Friend/Other

How Much Longer Do You Anticipate You Will Be a Caregiver? Less than 5 years 25% 5-10 years 31% 11+ years 44%

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NFCA MEMBER SURVEY

How Do We Define Caregiving?

NFCA's members are "heavy duty" caregivers. On the survey questionnaire. caregiving tasks for the most part spending more than 20 hours were divided into six categories.

a week on caregiving activities. This is a summary of how we spend our time. Here's the breakdown.

Caregiving Responsibilities That Take Up The Most Time Hours Per Week Spent In

Caregiving Activities 69% 70% 61%

60%

50%

35%40%

30%

20%

10%

0%o 0-8 Hours o 9-20 Hours o Activities of Daily Living (feeding. dressing. etc.) o 21-40 Hours

I!!!I Housework. Meals. Laundry. Groceries • Over 40 Hours o Emotional Support and Companionship • Constant Care • Guardianship. Legal Responsibilities.

Financial Management. etc. o Healthcare Tasks - Le. bandaging. medications. etc. o Providing Transportation

How Has Caregiving Affected You?

There are positives and negatives in most situations. and caregiving is no exception. These are some of the outcomes for NFCA's members.

Positive Outcomes Caregiving Emotions Found an inner strength 70% Frustration 67% I didn't know I had Compassion 37%

Sadness 36%Developed a closer relationship 36% Anxiety 55%with the person I help

Learned proactive skills 34% Caregiving Difficulti~s

Sense of Isolation and lack of 43%Negative Outcomes understanding from others More Headaches 27%

Having the responsibility for making 33%More Stomach Disorders 24% major life decisions for loved oneMore Back Pain 41%

More Sleeplessness 51% Loss of personal and leisure time 36% More Depression 61 % No consistent help from other 76%

family members

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54%

..

CHAPTER 2

THE EXTENDED FAMILY

If you are in your 20's or 30's, it may be difficult to imagine Mom or Dad as significantly different than they were during your formative years. During the developmental period of establishing your adult identity and perhaps your own family, it is easy to take for granted that Mom and Dad will always be available as

a resource - to advise, offer help, rescue failures, or at the very ~ ~A\

least. continue to cook the holiday dinners! ~0 If you are in your midlife years - caught between the ~. responsibility of raising and launching children and needing ~" II::'-o':>i.

to help out aging parents - welcome to the world of the "Sandwich Generation". juggling home life, a busy career, community responsibilities and elder care can certainly leave you feeling "caught in the middle".

Yet without the help of adult sons and daughters, many elder couples living with

,/ Parkinson's disease could not remain in their own homes and sustain meaningful lives. This chapter provides useful information for adult children who live near their parents' home, or

/. perhaps even provide care in their own homes, .' and offers suggestions for those who must help

with caregiving from a distance.

THE BIG PICTURE

Before you can effectively assist older parents with care planning, it is necessary to observe

the daily life and schedules of the older couple. Make it your business to learn their routines, opinions on important issues, and preferences. This takes time and commitment, but can be accomplished without being overly "nosy" or intrusive.

, .

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What are their biggest fears for the future? Are they realistic about potential care needs? Is it likely that they have sufficient funds or insurance to provide for their own care? Does someone they trust have medical and durable power of attorney in the event one or both of them become physically or mentally incapacitated? Who are their doctors, and which hospitals do they prefer to use? How does the designated caregiver feel about the job? How can you best help them? (Don't guess - ask them!)

MAKING A CARE PLAN

Caregivers for people with Parkinson's disease rarely have some momentous awakening at which they formally decide to assume the role or the title. PD is usually a slowly progressive condition, with gradual increases in disability over the

years. The subtle nature of symptom progression may allow both patient and partner to adjust gradually to increased demands on the caregiver, but the same subtlety and unpredictability of symptoms can also be very frustrating and difficult to put into perspective.

Often the disease has been present for many years before

adult children are called on to become significantly involved. This may happen naturally from discussion at a family gathering, or may be precipitated by a crisis. For instance. an acute illness, injury, or hospitalization can trigger a worsening of the Parkinson symptoms. and may be the event that brings extended family members into the decision-making arena. Or a family who has coped relatively well with the mobility problems presented by PD is at a total loss if cognitive dysfunction enters into the picture. (It should be stated that dementia does not develop in the majority of people with PD.)

The following steps to help a family determine the feasibility of home care have been adapted with permission from, The Comforts of Home: an Illustrated Stepby-Step Guide for Caregivers. by Maria Meyer with Paula Derr, R.N. (See order information in Appendix B.)

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Before your family can make wise decisions about the practicality of continuing to care for a spouse or parent at home, you first have to assess what level of care is needed for the person with PD. This requires a full understanding of the person's present condition, and anticipation of his or her needs in the areas of daily hygiene and health. Generally, these needs fall into two categories: :',

• Activities of daily living like eating, bathing, dressing, taking medicine and toileting

• Activities important to independence like cooking, housekeeping, getting to the doctor, and paying bills

Specific characteristics to look for In an overall assessment of the level of care needed include:

• ability to get out of bed and arise from a chair unassisted

• ability to walk independently, or with the aid of only a cane or walker

• ability to eat and drink independently

• ability to control bladder and bowel movements

• ability to call for help

• degree of voice impairment

• degree of sight impairment

• degree of confusion

• degree of emotional complications such as depression or severe anxiety

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After evaluating these characteristics, try to place the prospective care recipient in one of these categories:

Minimum assistance - This person is basically independent, can handle most household chores and personal care, and needs help with only one or two activities of daily living.

..

Moderate assistance - This person needs help with three or more activities of daily living, such as bathing, cooking, or shopping.

Maximum assistance - This person is unable to care for himself or herself. 5/he requires total assistance, and will require the services of a full-time caregiver in the home or placement in a residential care facility. At this level, home care without the assistance of professional caregivers may present real risks to health and safety.

Is HOME CARE FEASIBLE?

Whether you are contemplating caring for a person with Parkinson's disease in your home or helping plan for the primary caregiver in their home, the following factors must be considered:

• The designated caregiver should have few other family responsibilities. (crucial)

• The house must be large enough to comfortably accommodate the patient's needs, including space for lift chair, walker, wheelchair, bedside commode, or other medical equipment required.

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• All rooms should be on one level. The home environment is safe and supportive of maximal independence; necessary structural changes, such as ramps, handrails, bathroom alterations, etc. have been made.

• Arrdngements can be made to provide the person with PD with medication at required times, meals, assistance with personal care, housekeeping, transportation, and companionship.

WHY HOME CARE MAY NOT BE AN OPTION

• Financial considerations (when family caregiver must maintain other employment)

) Family limitations (time, money, young children still at home)

• Caregiver's physical and emotional strength may be depleted.

• Patient's condition requires skilled nursing care or round-the-clock attention.

• Physical layout of the home may be unsuitable.

• Individual with PD may prefer to live independent of family.

POTENTIAL REWARDS OF HOME CARE

• If the spouse with PD is supportive of the caregiver's efforts. the experience can strengthen the marriage.

• The relationship between the caregiver and the care recipient can grow stronger. Longtime caregivers often discover new strengths and abilities in themselves.

• Savings in health care costs can be significant.

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POTENTIAL HAZARDS OF HOME CARE

• You will lack freedom. You will have less time for other family members; your marriage may suffer.

• Your duties have an adverse impact on your job, hobbies, and personal life. There will be less time for religious services and volunteer work.

• Friends and family members may be critical and offer unwelcome advice.

• Children in your home will need to be quieter.

• You will often be awakened during the night. Heavy-duty careglvlng can be physically and emotionally draining. Chronic fatigue and exhaustion increases risks to your own physical and emotional health.

• Instead of being grateful, the person in your care may display unpleasant changes in attitude; he or she may react to constant daily irritations by lashing out at you.

• You may feel duty-bound to spend personal funds on caregiving.

• You may feel unable to control life's events and resent being controlled by someone else's schedule and needs. You may suffer from depression, worry, anger, regrets, guilt and stress.

CARING FROM A DISTANCE

Children who live far away from parents coping with Parkinson's disease are often at a loss as to how to be helpful in ways that are both meaningful and possible. Perhaps to assuage their feelings of guilt at not being available to help meet everyday needs, some long distance fami Iy members attempt to make up in advice what they can't offer in hands on care!

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As a nurse practitioner (Imke), I sometimes have the privilege of facilitating family conferences, in which the goal is to make decisions about elder care for people with PD. Curiously, it is not infrequent that the son or daughter who lives farthest away voices the strongest opinion regarding "what Mom and Dad should do"!

Mary Willis, NPF Coordinator in Rancho Mirage, California, notes recurring problems when children who live out-of-town come in "like a whirlwind" and dictate changes in the care plan already established and supported by other siblings. She cautions that ill-thought-out advice, without the advisor in place to monitor changes, can leave the patient and caregiver confused and upset.

Willis also counsels well-intentioned spouses and adult children not to make rash promises to the person with PO that may be impossible to keep. Rather than saying, "Oh Dad, of course we'd never put you in a nursing home," it is better to express your empathy for a parent's preference to live at home, and affirm your willingness to discuss alternatives if the need arises.

While relatives not struggling with issues of everyday care often do have a valuable ability to "see the forest instead of the trees", this objective wisdom must be expressed with great care and without criticism for family members who live close by and carry the greater responsibility of caregiving.

So what can long-distance relatives do to be helpful, short of "moving back home"? Perhaps some of the following ideas and needs shared by N PF support group members in Arizona, will meet needs for you and your family:

• Set a designated day and time to call home each week. Don't assume that "no news is good news". Many older parents keep their own counsel even during extremely tough times, not wanting to bother adult children who are "busy with their own lives." Make the call faithfully; pay for the call. (It's amazing how many seniors shy away from placing any phone call that is "long-distance" due to real or imagined money concerns.) If you are the son, speak for yourself. While your parents may dearly love their daughter-in-law, they want to talk to you personally.

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• Inquire tactfully but clearly whether financial help is needed. Many parents won't ask for hel p of a monetary nature, even if the limitations of a fixed income and medication costs mean doing without vital supplies. If a regular subsidy is unacceptable, offer something specific. For the incontinent patient, someone picking up the tab for pads and diapers is useful. When health insurance does not cover medication costs, offering to pay for a month's supply can be a great relief.

• Send a surprise caregiver package once a month. This might be a bouquet of flowers, a restaurant gift certificate, or a pampering basket filled with elegant bath supplies. Be creative. Even a card with an encouraging hand-written message can mean a lot in the middle of a trying day!

• Budget funds for regular trips to check on your family. Don't add to the primary caregiver's

stress level by expecting him or her to take care of you too! Get your own ride from the airport. If crowded quarters

will be a strain, reserve a nearby hotel room. You are not there to be entertained, but to provide a listening ear and a helping hand.

• Learn about the medications used to treat Parkinson's disease, and encourage your family to communicate problems and changes to their physicians. Inquire about the health of the "well" parent. Is your mom's mammogram overdue? Does your dad neglect his own medical check-up because he's pre-occupied with caregiving? Ask them to schedule a visit to their neurologist when you can accompany them to the appointment. The doctor will benefit from hearing your observations, and you will learn much about your parent's communication style and be able to reinforce the doctor's instructions later.

• Once or twice a year, strongly encourage and provide a 3-5 day respite for the primary caregiver. Plan to arrive a day or two prior to the caregiver "leave of absence" so you can master the necessary skills to help your care recipient. If filling in personally is simply not possible, offer to pay for a respite stay in an extended care facility. You and your family may be "saving for a rainy day" when it's pouring outside!

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• If your parents are able to travel, invite them to visit you. For some couples living with PD, it is easier to travel and be a guest than to host family gettogethers in their home. As an added benefit, while parents are visiting your family, other relatives get a welcome break from their usual caregiving responsi bi Iities.

• When and if the time comes, exercise your right as the "out-of-towner" with less caregiving burden to affirm the difficult decision to place the loved one with PD in a residential care facility. It is mistake to allow worries about cash flow, sibling rivalry, or dwindling inheritances get in the way of doing what's best for the key players whose lives are most affected.

THE HARDEST JOB

OF ALL

The practical tips for long-distance family members barely touch the concerns of those of you who live far away from elderly parents yet who are the primary caregivers.

Few of us would move away from infirm parents to avoid the trials of caregiving, but it is a much more agonizing decision whether to move back to help them in later years. Most people have established families and careers

that preclude moving back to the hometown or current location of ailing parents to provide daily care. One family's story illustrates this point ...

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PARKlNSON DISEASE: CARING AND COPING

Anna Wright is a recently widowed 75year-old homemaker who lives in a lakeside community near San Antonio. Despite dealing with the sudden loss of her husband two years ago and the fact that her three adult children live in cities scattered across the U.S., Anna maintains her own home and yard, and leads a very busy life in her small town. This rosy picture of an active senior enjoying a productive existence leaves out one poignant reality: She is the sole caregiver for her mother, age 99, who resides in an assisted living facility in Lubbock, Texas, 400 miles away. This means making the long drive every month, telephone calls from frustrated nursing staff in the middle of the night (the elder lady is not always a joy to deal with!), arranging last-minute flights when emergencies occur, and the constant overshadowing worry of, "What will happen next"?

The odyssey that people are living longer (if not necessarily healthier) lives has resulted in the phenomenon that many caregivers who are themselves senior citizens are called on to take care of even older relatives. Neither the healthcare or social work system in this country has yet come up with practical solutions to help this most forgotten group of care providers.

One encouraging trend is the emergence of geriatric care managers (also known as geriatric case managers). This is a rapidly growing professional group,_ many coming from the fields of nursing, social work, psychology and gerontology. Geriatric care managers provide a variety of services such as arra,nging financial, legal, and medical services, in-home care providers, and transportation. They regu larly communicate

----------------24---------------


with family members, and may also hel p with comprehensive needs assessment, family conflict mediation, and crisis intervention.

Geriatric care management fees vary, depending on geographic location and what services are needed. It's important to know that geriatric care managers are not currently required to be certified by either state or federal governments; therefore it is recommended that you personally interview the prospective care manager prior to engaging his or her services. Information to help locate a geriatric care manager is provided in Appendix C.

ACKNOWLEDGEMENT: The sections on determining the feasibility of home care

in Chapter 2 and instructions for assisting with activities of daily living in Chapter 3 are adapted with permission from:

The Comfort of Home: An Illustrated Step-by-Step Cuide for Caregivers

Authors: Maria M. Meyer with Paula Derr. R.N. Published by Care Trust Publications LLC

See order information in Appendix B.

---------------25--------------


ifyoufind it in your neart to care for some60cfy e[seJ

you wirenave succeeded. -- ~ayafinge[ou

------------ 26 -----------

CHAPTER 3

ACTIVITIES OF DAILY LIVING ..

The purpose of this chapter is to provide task-oriented information for caregivers who are in the process of determining when and how to best provide physical assistance to a family member who has Parkinson's disease. As PO progresses and motor symptoms worsen, someone who has previously been able to perform most Activities of Daily Living (ADL's) independently may gradually require more assistance. AOL's include basic personal functions such as bathing and grooming, dressing, eating and drinking, and walking.

The question of when to help is often complicated. The person you are trying to assist may prefer to do things on his or her own, even if it takes a long time to accomplish. S/he may tolerate assistance with non-threatening tasks like buttoning a shirt or getting an arm into a sleeve, yet resent reminders to take medication or an offer to take over the chore of paying the bills. Most of us dread the thought of needing help with truly personal functions like bathing and toileting.

Care partners can fall into the trap of assuming that they know what the person with PO needs or wants, when it would be better to simply ask the person in question what s/he prefers or needs. An honest, ongoing dialogue can help maintain the personal dignity of the caregiver as well as the care recipient.

GROOMING NEEDS

Impaired fine motor abilities and problems with balance can cause the individual with PO to need help with tasks related to hygiene. For instance, it is often hard for someone with PO to adequately brush his teeth, due to rigidity in the hands and fingers. An electric toothbrush such as the Sonicarf!JY model may partially solve the problem, but for thorough brushing or flossing between teeth, assistance may be required.

27 -------------


Tips for Tooth Brushing:

• Assemble needed supplies in advance. (Latex gloves, a soft toothbrush, tooth paste or baking soda, dental floss, a glass half full of warm water, and a medium size bowl if access to a sink is limited)

• Wash your hands with warm soap and water.

• Have the person stand at the lavatory or sit erect near a bowl or basin.

• Keep a small towel nearby if drooling is a problem.

• Have him open his mouth and gently brush all surfaces of the teeth from front to back. Flossing between teeth can also be done at this time. Avoid touching the back of the tongue to prevent gagging.

• Offer a final sip of water to rinse the mouth, and instruct him to spit into the bowl or sink.

• A good basic rule is to brush after meals, twice daily as a mInimum. Inflammation (redness) or other abnormal appearance of the teeth or gums should be reported to the dentist. Routine dental exams and professional cleaning of the teeth is advised every six months or as recommended by your personal dentist.

Tips for Denture Cleaning:

• First remove dentures from the mouth.

• Rinse them under water and soak in a commercial cleaner solution in a denture cup.

• Have the person rinse his mouth with warm water or a weak mouthwash solution, and spit into the sink or bowl.

• Stimulate the gums with a very soft toothbrush before returning the dentures to his mouth.

---------------28--------------


Tips for Shaving:

Some people prefer a wet shave with a safety razor, but clumsiness in the dominant hand may make it safer for a person with PD to use an electric razor. If you are shaving the person yourself, the following tips are useful.

• Dentures should be left in place in the mouth.

• Adjust the light to see clearly, but so it does not shine in his eyes.

• Drape a bath towel around the shoulders, under the chin. Soften the beard by wetting the skin with a warm washcloth.

• Apply shaving cream to the face, avoiding the eyes and other sensitive areas. Hold the skin taut with one hand, and use short firm strokes in the direction of hair growth.

• Rinse the skin well with a wet washcloth, and pat dry. Apply a soothing lotion if the skin is dry. Aftershave astringents are often too harsh for older skin.

Tips for Bathing and Showering:

advise showering as the preferred alternative.

One of the obvious concerns is the safety and convenience of the shower facility. Ideally the shower stall would be large enough for two people. Properly installed, well-placed grab bars inside and just outside the shower entrance are a necessity. It is helpful to have a shower chair and a hand-held showerhead with a long hose and an adjustable stream. Be sure that floor surfaces inside and outside the shower are not slippery.

29 -------------


Approximately 20%-30% of people with PD also have dementia (confusion). Some of these people may be easily frightened by the sound and feel of running water. If this is the situation, it may help to let the person smell the soap and feel the towel to help him or her understand.

Ways to simplify the shower procedure include:

• Make sure the room is warm, and gather all necessary supplies before you turn on the water.

• Explain to the person what you are going to do. Provide a shower stool in case s/he needs to sit down.

• Turn on cold water first, and then the hot to prevent scalding. Use gentle water pressure and adjust the water temperature before s/he gets in.

• Spray and wash the less sensitive parts of the body first, such as the feet and legs. Ask the person to sit or hold the grab bar while you work. Try to move the water hose around the person rather than asking him to move around.

• If you are shampooing the person's hair in the shower, make sure s/he is seated, with the head slightly tilted back. Wet the hair from a gentle water stream; apply shampoo sparingly (half-strength dilution is adequate), taking care not to get soap in the eyes.

• Rinse hair meticulously, since residual shampoo in the hair can aggravate seborrhea (dandruff). Since seborrheic dermatitis is common in Parkinson's disease, you may wish to use a shampoo that contains a mild coal tar or salicylic acid. (Neutrogena@ and /oni/@ are common brand names.)

• Guide the person out of the shower and wrap him in a robe or towel before turning off the water (to avoid a startling rush of hot or cold water). An absorbent terry-cloth robe is often easier for someone with PD to use than depending on the manual dexterity required for thorough towel drying.

---------------30--------------

• Assemble

f}fJ l

rough edges.


• Assist as needed with toweling. paying close attention to the axilla (armpits). groin. and the area under the breasts ;n women. This will help prevent fungal infections and other skin irritatior IS. Apply a non-drying lotion (no alcohol or lanolin base) to the extremities and the back.

Many dermatologists advise adu Its to bathe less frequently than the dai Iy ritual and to use warm water rather than hot to avoid over-drying the skin. An every-other-day bath is sufficient for most people. with a shampoo 2-3 times per week.

Tips for Nail Care:

Nails are softened after a bath or shower, so this is a good time to tend to nail care, using the steps that follow:

all equipment you might need. such as clippers, manicure scissors, emery board (metal files are too harsh), damp

washcloth, and lotion or hand cream. )

• Position yourself and the other person to comfortably perform the task. Dry the nails and

gently push back the cuticle; cuticles should not be trimmed.

• To prevent ingrown nails, finger and toenails should be cut straight across. File the nails gently to smooth any

• Massage hands and feet with cream or lotion. Feet should be inspected for bumps, cuts, or reddened areas. Any abnormalities should be reported to a podiatrist (foot specialist) or your family physician.

-------------- 31


Tips for Getting Dressed:

Helping a person with PD to get dressed can be simplified by establishing a routine. First, layout the clothes in the order they will be put on. Assemble any necessary adaptive equipment, such as a button hook or shoehorn.

• The person being dressed should be sitting. Allow time for the person to dress himself or herself to the extent that is possible.

• Select clothes that are easy to put on. Elastic waistbands, front openings, bras that hook in front, and Ve/cro@ fasteners are good choices. Tube socks may be easier to put on than dress socks. Avoid pantyhose for women.

• First. put clothes on the side most affected by Parkinson symptoms. Then dress the more flexible extremity.

• Busy patterns make it hard to find buttons and zippers. Avoid shoes with crepe soles that can cause tripping and subsequent falls.

When the person you are assisting has dementia as well as motor impairment, these additional tips may be useful:

• If the person has favorite articles of clothing, buy duplicates. Group similar clothes together in the closet.

• Replace buttons on favorite clothes with Velcro@ closures.

• Choose nightgowns with overlapping back closures.

• Avoid clothes that must be put on over the head.

Procedural training for some of the more complicated aspects of providing physical care such as feeding, toileting, and coping with incontinence is beyond the scope of this manual. For more detailed information on physical caregivi.ng, refer to The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, and other books and videotapes noted in Appendix B.

32 -------------


MANAGING MEDICATIONS

Parkinson's Disease: Medications, provides accurate and detailed information about anti parkinson and other medications commonly prescribed for people with PD.

The purpose of this section is to provide guidelines for family caregivers who assist with medication management at home. Medications are most effective when patients and caregivers have a basic understanding of how they work and how to avoid potential harmful effects.

~

Your physician needs to know all medicines you are taking. in order to avoid drug interactions and minimize risks of over-dosing. It is a good idea to take all your pill bottles. both prescriptions and over-the-counter remedies. when you visit your doctor(s). Make a list of all medications. dosages. and times they are given. Keep one copy with you and one in a convenient place at home.

Your physicians also need to know about any allergies to medications you may have. any severe side effects to a particular medication that may have occurred in the past. and your pattern of alcohol consumption. (Alcohol can interact with many medications.)

When you receive a new prescription, take time to ask the following questions:

• What is the name of the medication?

• What is the medication being prescribed for? Is it to replace another medication or to be taken in addition to other medications?

• What is the dose and how often is it to be taken? (Many anti parkinson medications are increased gradually to avoid side effects. Make sure you have the dosing schedule written down precisely.)

• When and how will you know if the medicine is working?

--------------- 33


• Are there common or serious side effects to watch for?

• Should certain foods, alcohol or activities be avoided while taking this medication?

• How long should you take the medication? Knowing when to stop taking a drug is as important as knowing when to start!

Medications can be misused in several ways. The most common mistake is failure to take the drug as prescribed. This may be simply forgetting to take a dose, deciding to take extra doses, (stemming from the faulty "more-is-better" philosophy), or underdosing in an attempt to save money. If in doubt, consult the prescribing physician or your pharmacist.

For short-term prescriptions such as antibiotics, a common error is stopping the f

medication when the symptoms have disappeared, but before the prescribed medication is finished. Failure to complete the entire course of treatment can lead to a relapse and necessitate further medica I care.

Improper storage of medications can diminish their effectiveness. It is important to observe commu: pi p,~a! i'\ ·IS such as storing medications in a cool, dry place and out of the reach of children. Kitchen windowsills and humid bathroom cabinets are not good stor2('~: places for most medications. Clean out your medicine cabinet at least twice 3 y'e,', using the following guidelines:

• Discard unused or expired prescription medicines. Flush old pills and liquids down the toilet rather than putting them in the trash.

• Check expiration dates on over-the-counter medications and su pplements. Dispose of any that have expired in the same manner as prescription drugs.

• Rinse and discard old medicine bottles; do not use them to store other medications.

• Dispose of aspirin or acetaminophen that is crumbling or smells like vinegar.

34


• Dispose of tablets that are discolored, misshapen or stuck together.

• Dispose of liquids that have changed color, become cloudy, or have developed a residue in the bottom of the bottle.

• Discard any tubes of cream or ointment that leak, have separated, hardened, or changed color.

Most adults prefer to manage their own medication regimes. When someone with PD forgets to take a scheduled dose of medication, it will probably cause only an increase in Parkinson symptoms until the next dose of medication takes effect. A more troubling pattern is when someone forgets that s/he's taken the scheduled dose, and an hour later takes a second pill!

The following suggestions are offered for caregivers whose Parkinson partners have difficu Ity remembering to take their medications effectively or whose physical impairments make it difficult for them to do so:

• Establish a system to enhance the likelihood that the person can self-medicate efficiently. This can be as simple as dividing each day's medications into dose packets or pill boxes labeled with the times they are to be taken.

• Verbal reminders to take medication may be appreciated, as long as it's not interpreted as "nagging". Arguments sometimes erupt between caregivers and patients about whether the person is over-medicating to avoid "off" periods of immobility. It may be helpful to hold these debates until your next visit with the doctor to get his or her point of view.

• Encourage or provide ample fluid when gIVing pills. This reduces swallowing problems and enhances absorption and benefit from the medication. Taking a tablet or capsule "dry-mouth" or with only a small sip of water is not a good practice.

• Antiparkinson medications often work best when taken on a precise schedule. Always carry a supply with you. A long wait at an appointment, heavy traffic, or other delay could mean that the next dose is needed before you get home.

35


ACTIVITY PLANNING

Some people with Parkinson's disease, although they do not have dementia, still struggle with feelings of apathy and a tendency to withdraw socially as the disease progresses. Parkinson symptoms such as freezing (the gait problem where feet seem to be "stuck" to the floor), frequent falls or fear of falling, dysarthria (low voice volume), or slowness of thinking can lead to a reluctance to maintain his or her usual level of initiative and interaction with family and friends. It may be useful for the spouse or other primary caregiver to step into the role of "activity director" for the person with PD.

It can be helpful to make a daily plan to • structure the person's time and channel his or her energy. If possible, the person with PD should make the plan personally. It s/he can type or use a computer, the task of putting a plan on paper not only provides mental and social stimulation, but good fine motor exercise! Allen's daily activity plan provides an example:

Allen is a 74-year-old man who has had Parkinson's disease for 14 years. The following is his sample activity plan that he says helps him "stay on track":

Morning

• Get up at 7 a.m.; remember to use the cane to walk to the toilet. • Take first daily dose of Parkinson medication with 1/2 glass water. • Get the newspaper; prepare coffee, and eat breakfast. • Brush teeth, shave, shower, and dress. • Watch morning news show on television. • Do stretching and strengthening exercises. • Perform household or yard chores. • Run errands as scheduled. • Take second dose of medication prior to lunch.

---------------38--------------


Midday and Afternoon

• Have lunch at nearby cafe. • Walk the dog outside for 20 minutes or

ride exercise bike. • Take a 45-minute nap. • Eat a piece of fruit or other snack. • Community activity (senior center,

volunteer work, support group). • Phone a friend or mai I a card to someone

out-of-town. • Take third dose of medication prior to

evening meal.

Evening

• Watch early news and weather on TV. • Have dinner at home or with friends. • Choose a relaxing activity, such as seeing a

movie, playing a computer game, or working,a crossword puzzle.

• Layout clothes for following day. • Take bedtime dose of medications. • Listen to relaxing music while preparing for bed.

NPF manuals on diagnosis and treatments for PD, nutrition, physical fitness, and speech therapy, offer invaluable information for people living with Parkinson's disease. All manuals are available at no charge to patients, family members and healthcare professionals by calling the 800 number listed on the back cover of this manual.

Numerous other resources for caregivers are listed in the appendices of this manual as well. In addition, the American Red Cross and your local Area Agency on Aging can recommend training courses for family caregivers.

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One day) wfio Itnows? C£ven tfiese fiardSfiips wire 6e grandtfiings to [oolt 6aclton.

-- Virgie(70-19 eE.c)

------------ 40 -----------

•

CHAPTER 4

TAKING CARE OF BUSINESS

GETTING IT ALL

TOGETHER

As a practicing attorney, and in more recent years in my role as an NPF Coordinator, I (Hutton) have often reminded patients and care partners to organize their medical histories, keep a list of current medications, and arrange for

living wills and advance directives. We also stress that it is a good idea to let family members know about the locations of important documents and accounts. Nothing has brought this home to me more than my recent experiences in which my brother and I have had the responsibility of helping my mother collect necessary information following the death of my father.

My dad had a well-organized system for keeping all of his records. Wanting to spare my mother the "trouble" of keeping up with it all (and I think the whole business of organizing a system was something of a hobby for him as well), he never quite got around to explaining his system to any of us. Dad was not particularly secretive about it; from time to time he would mention various aspects of his system to one or the other of us.

After Dad died, my brother and I spent several weeks going through his records and papers, piecing together the puzzle that was his record-keeping method. In the end, everything was there, and once we found the key to the system it proved to be a very good one. But how much easier it would have been if he had explained his approach to record keeping, or at least written it down for us to use when the need arose.

--------------- 41


For a variety of reasons, it is not uncommon for the partner who takes care of the family finances not to share such information. Sometimes the "financial" spouse simply enjoys doing this on his or her own; in some instances the other spouse has never expressed much interest in how the finances are handled. Occasionally the financial partner simply doesn't want the spouse or adult children to know the financial status of the couple; some people prefer not to subject their financial decisions to scrutiny or debate.

However, to assist those who may suddenfy or gradually have to take over management of financial and business affairs, the spouse who manages the family finances should at least write down all pertinent financial information. Ideally he or she would also periodically review the records with at least one other person. That person could be the same individual chosen to hold power of attorney in the event of an unexpected illness or hospitalization.

GETTING ORGANIZED

Logical categories and details to be recorded in each category are suggested in the following sections.

You can purchase an inexpensive three-ring binder and pre-punched pocket dividers or envelopes

to hold copies of important documents. The originals should be stored in a fireproof box,

safe, or bank deposit box and their location listed in your notebook. Because we

never know under what circumstances the information might be needed, be sure to inform someone of the existence and location of your notebook. You may also wish to give photocopies of the documents to a trusted family member or your attorney for safekeeping.

Family Section

The family section should contain addresses and telephone numbers for your home and office; the make, model, color and license number of automobiles; names, addresses and phone numbers of neighbors and nearest relatives who

-------------- 42

PARKJNSON DISEASE: CARING AND COPING

should be notified in case of an emergency. Include the location of an extra house key, electrical breaker box, water cut-off, thermostat, alarm system box and any instructions that would be helpful.

List the names and phone numbers for each of the following:

• Accountant • Heating and air conditioning • Ambulance service • Insurance agents • Appliance repair • Investment counselor • Attorney • Lawn/yard care • Banker • Pharmacy • Clergy • Plumber • Dentists • Realtor • Doctors and Hospitals • Security (alarm system) • Electrician • Utility companies

• Veterinarian

This section should include a brief personal history of each household member (see sample form at end of this chapter), providing information that would be needed in the event of emergency medical treatment or a death. Consent for emergency medical treatment and advance directives to physicians also belong in this section. Family members may wish to leave written instructions regarding funeral services, burial or cremation, etc., in this section.

Copies (not originals) of the following documents should be stored in the pocket dividers or envelopes in the family section:

• Wills • Trusts • Military papers, discharge, disability verification • Marriage licenses, and any divorce or separation papers • Social Security cards • Passports • Birth certificates

Write the location of the original documents on the pocket divider. For wills and trusts, include the dates, names and telephone numbers for the attorneys who drafted them. Expanded definitions of common legal terms and documents are provided later in this chapter.

---------------43--------------


Finance Section

The finance section should include:

• All bank accounts, including the name, number and type of each account. Note the name of the bank, a bank officer to contact, persons who are authorized to sign on the account, and where to find the checkbook or passbook.

• Location and number of any safe deposit boxes, location of keys, and persons authorized to sign for entry into the box and its contents.

• Credit cards. including the bank or company issuing each card, a telephone number, and who is allowed to sign on the card.

• Investments firms and stockbrokers, including addresses and telephone numbers. Give each account name and number with the firm, the names of the stocks, bonds, certificates of deposit (CD), or other investments handled by the firm, the number of shares, and the location of the certificates.

• Miscellaneous assets such as retirement plans, annuity contracts, gold coins, antiques, or jewelry.

Insurance Section

The insurance section of your notebook can be divided into types of insurance such as life, health, disability, automobile and homeowner. For each policy you will need the name of the insured, the company, agent, policy number, where the policy is located and details of coverage and premium payments.

----------------44---------------


Property Section

The property section should include a list and location of deeds and mortgage papers on any real estate you own. Titles and license receipts for automobiles, boats or other vehicles can also be listed in this category. As with other important legal documents, the originals should be stored in a fireproof place, and only copies placed in the pocket divider.

Receipts for major property improvements should be stored in the envelopes in this section, as well as important information related to any vehicles owned. Some people may prefer to combine property and insurance into one category and folder.

Business Section

The business section is reserved for information about any businesses you own or in which you have a financial interest. Information might include:

• Name and type of business

• Structure for legal and tax purposes (whether it is a sole proprietorship, partnership or corporation)

• Names, addresses and phone numbers for partners or associates

• Names, addresses and phone numbers for accountants, attorneys, and other key consultants

• List of business bank accounts and numbers, and contact information for an appropriate bank officer

• List and location of important business documents such as tax records, income and property records, canceled checks, receipts, keys, employee files

• Copies of employment contracts, partnership agreements, buy/sell agreements, etc. (Again, originals need to be more safely stored.)

---------------45--------------


Legal Documents

Among the important documents listed in the family section of your notebook are wills, living trusts, advance directives (living wills) and durable powers of attorney.

A will allows you to legally define who your heirs are and what they will inherit upon your death. If you should die without a valid will, the law of the state in which you have permanent residence will determine how your property will be distributed. A valid will can also minimize the cost and hassle of distributing your estate for your heirs. Because laws change and circumstances change, your will should be reviewed periodically.

A living trust is a revocable plan that provides for the management of your assets if you become disabled. It can also provide for distribution of your assets when you die, and frequently avoids the delays and expense of probate. The trust becomes the legal owner of your property, and you manage the assets as the trustee. You can also name an alternate trustee to take charge if something happens to you. A living trust is revocable at any time, and can be amended when necessary. A living trust can be used to manage most of your finances; however a durable power of attorney may still be needed so that your designated agent can sign related legal documents such as insurance, retirement and pension forms.

A durable power of attorney (POA) for finance allows you to appoint someone to act as your representative for financial and business matters. This representative is called your agent or attorney-in-fact. A "durable" power of attorney continues after the incapacity of the creator (you), whereas a "regular" power of attorney ceases upon the creator's incapacity. Therefore, you should specify that the powers given to your agent continue even if you should become incapacitated. The powers of your agent are determined by the terms of the

---------------46--------------


durable power of attorney document itself. These powers can be as broad or as narrow as you wish them to be. Powers commonly designated include making financial decisions, paying bills, buying, selling and maintaining real estate, filing and paying taxes, over-seeing investments, and managing small businesses.

A durable power of attorney is a valid document on its face, and the person in possession of it can present it to any authority such as a bank or title company and transact business on your behalf. It is wise to consider very carefully whom to appoint as your agent. Because the durable power of attorney gives your agent so much power, you may wish to keep it in your notebook to be accessed if needed rather than give it to the individual in advance.

In addition to specifying what powers your agent will have, you may also be able to specify special circumstances under which your agent's powers take effect. For example, the durable power of attorney may specify that it does not go into effect unless a doctor certifies that you have become incapacitated.

Advance directives are of two types: a living will and a medical power of attorney (or durable power of attorney for health care). The living will, also called a directive to physicians, allows you to put into writing your wishes about medical treatment should you be unable to communicate your preferences near the end of your life. It allows you to state that you do not want artificial life support if you have a terminal condition. A living will can be revoked at any time, orally or in writing. As long as you are able to express your own decisions about your medical care, your advance directive will not be used. You can accept or refuse any medical treatment. Both state and federal law govern advance directives, but all 50 states and the District of Columbia have laws recognizing them.

A medical power of attorney is designed to allow a representative of your choosing to make routine medical decisions for you should you lose the ability to make your own decisions. This representative, as your agent, can generally make health care decisions only after a physician certifies that you are unable to make these decisions yourself. Your agent is authorized to make health care decisions at any time you are unable to do so. not just at the end of your life. Your agent is required to make health care decisions according to your wishes. If the agent is uncertain of your wishes, then decisions should be in your "best interest". You can veto the doctor and the agent's decision at any time, regardless of your mental state.

----------------47---------------


If you have not created an advance directive or financial or medical powers of attorney, the court may have to appoint a guardian or conservator (the terms are frequently interchanged) to oversee your affairs should you become incapacitated. Conservatorships are usually established for people in a coma. those who suffer from advanced dementia. or who have other serious illnesses or injuries.

Conservators hips are time-consuming and expensive to establish and maintain. The conservator must post a bond. paid for out of your estate. and make periodic reports accounting for how s/he has managed your assets. The conservator is usually paid a fee from your estate for his or her services. and the ongoing assistance of a lawyer is frequently required. Court approval is often required before a conservator can make major decisions such as sale of property. Finally, conservatorship may be emotionally trying for everyone concerned. All court proceedings are matters of public record and may be embarrassing for those who prefer their affairs to remain private. Conservatorship is not easy to terminate. requiring a hearing and court order to do so.

In summary. laws governing all of these vehicles for managing your assets and making health care decisions vary from state to state. I do not recommend using the generic forms that are commonly marketed in bookstores and on the Internet for creating these documents. They may not meet the requirements to make them valid in your state. and may not adequately accomplish your goals. The safest way to insure that you have appropriate and effective documents in your state is to consult an attorney to help create valid legal documents.

Compiling your notebook may seem to be quite an endeavor when you first begin. However, once you've gathered all this information and consolidated it in one place. you will find that in addition to knowing you have done a great service for whoever might have to manage your affairs in the future. you have also made handling these matters much easier for yourself. To help with the task. we have provided sample forms for the personal history and financial information sections.

----------------48---------------

-----------------------------

--------------------------------

-------------------------------------

--------------

-------

-----------------------

Full legal name: _

~aiden name if applicable: _

~arital status: 0 Single o ~arried o Widowed D Divorced

Spouse's full name: _

Number of years at this address: _

Father's full name: -----"---------------------------

~other's full maiden name:

Brothers and sisters:

Children:

Major illness/surgery: Attending Physician:

Occupation: Employer:

Schools attended:

High School: City/State: Diploma/Date: _

College: City/State: Degree/Date: _

Other: City/State: Degree/Date:

Church/Synagogue affiliation: _

Service and social clubs, union memberships:

Special recognition/awards/other information: _

49 -------------


Amida{{ the easify roveddarfings ofCharfie (}3rown's circ{e, 06streperous Lucy ho{ds a specia{p{ace in my heart. Shefusses andfumes andshe carps andcomp{ains.

'That's 6ecause Lucy cares. Andit's the caring that counts.

-- Judith Crist - VSfilm critic

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--------------------------------

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-----------------------------------

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FINANCIAL INFORMATION

'A separate form should be completed for each bank account. credit card, investment, and insurance policy.

Bank Accounts'-'

Bank name:

Bank address: _________________ Bank phone: _

Bank officer: Bank account # ---------- Type of account: 0 Individual [] Joint

Persons authorized to sign on account:

Location of checkbook/passbook:

o Checking ------------------

o Savings

_

Credit Cards'"

Card issued by: Phone:

Billing address: _

Card type (Visa/MasterCard, etc.): _

Card #: Expiration date:

Authorized signatures:

Investments'-'

Firm: Broker:

Address: Phone:

Account name: Account #:

Type of account: Number of shares: _

Location of documents:

Insurance'"

Name of party insured: Type of insurance:

Name of company: _

Address:

Agent: Phone:

Policy #: Premium amount: _

Due dates: o Check o Bank Draft o Other:

Details of coverage:

Beneficiaries:

For automobile insurance:

Automobile: Vehicle License #:

Drivers covered: Driver's license numbers:

51


Life is mostfyfrotli ana6u66(e. rrwo tliings stanauk.! stone: 1(inaness in anotlier's trou6(e anaCourage in your own.

-- )Iaam Linasay qoraon (1833-70)

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•

CHAPTER 5

BUILDING A SUPPORT NETWORK

In too many instances, long-term caregiving takes place in a vacuum. Friends may drift away over time, extended family members become pre-occupied with their own obligations and schedules, and the basic family unit is left to manage in relative isolation.

Sometimes the person with PD and primary caregiver isolate themselves, withdrawing gradually from participation in the community and prior social life. This can happen for a variety of reasons -- sometimes stemming from the Parkinson partner's preference that "only s/he can meet my needs" or from the caregiver's belief that no one else can adequately provide care or should be saddled with the burden of providing care.

Denise Brown, author of The Caregiving Years: Staging a Meaningful Experience. frames the experience of caregiving in six stages. Her premise is that the length of time spent in each stage will differ for every caregiver, but that the emotions and experiences will be similar. In this chapter we have adapted four of the six stages to families living with Parkinson's disease, and offer suggestions for coping with the stresses and adaptations required at each stage.

STAGE 1 THE EXPECTANT CAREGIVER

Who are you? You have a growing concern that within the next 12 to 18 months, your aging relative will need more and more of your assistance and time. You're concerned that because of his or her age, medical condition, and current living situation, more help will soon be needed. Although an immediate crisis may not face you, the threat of one seems to hang on the horizon. Rather than closing your eyes to avoid seeing that horizon, you can take some pro-active steps now that will make future caregiving days easier.

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Your purpose: You expect to become a caregiver; this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values.

This is also your time to concentrate on taking care of yourself - keeping up with family and friends, enjoying your hobbies, pursuing your career goals, perhaps taking trips you've always dreamed of.

Action Plan for Expectant Caregivers:

• Consult with a good lawyer about eldercare issues. Begin putting together the financial profile described in Chapter 4. "Taking Care of Business".

• Determine the financial status of the person for whom you will be providing care. You will need to know monthly income from pensions and social security, and learn about bank accounts, investments. etc.

• Investigate community healthcare options. Will the person qualify for home health care services? What housing options are available. Can the current living environment be modified to accommodate future needs, or must you look for assisted living or retirement communities?

• Learn more about the medical conditions of your loved one, including medications and other treatments required. Get acquainted with the physicians and others on the healthcare team with whom you will be working closely in the future.

• Start a personal journal. Chronicle your feelings. concerns, anrl actions. You may be surprised at your feelings of loss. Your preparation for the future allows you to see what your care recipient - and you - might lose. You both will experience changes in your relationship, your schedules, and your degree of freedom. Writing down your thoughts about potential losses can stimulate the creative thought process necessary to preserve the freedom and quality of the relationship through minor adjustments and changes.

----------------54---------------


STAGE II - THE FRESHMAN CAREGIVER

Who are you? You have been caring for an aging relative for six to 18 months. Your duties range from running errands and paying bills to hands-on care. You are getting a feel for current and future budget needs to provide the required care. You may find there is only time to keep up with hobbies and interest you enjoy most. but remain determined to enjoy spendi ng some ti me on you r yourself, enjoying your life.

Your Purpose: This is your entry into the caregiving role -- your time to experiment. to get your feet wet and see what works. This is your opportunity to learn how the healthcare system works, or in some cases, how it can work against you. Now is the time to shape your caregiving pet'sonality:

What duties are you comfortable with? What duties make you uncomfortable? How well are you and your care recipient getting along? What situations would create overwhelming stresses for both of you? What situations should you try to avoid because you know they will lead to bitter arguments and hurt feelings?

Action Plan for Freshman Caregivers:

• Get help early. Counseling, respite care one or two days per week, a home health aide, etc., should be looked at as early interventions, not "last ditch" alternatives. Involve your family from the beginning by sharing your concerns with them.

• Learn how to provide proper care from healthcare professionals, books or videos. Contact Parkinson organizations for instructional literature and advice regarding local resources. If your care recipient is hospitalized or receives therapy at a rehab facility, ask the staff to show you proper caregiving techniques for tasks like lifting, transfers, and bathing. It is very difficult to provide care when you are unsure of what you doing. Learning basic skills will build your confidence in the role of physical caregiving.

-------------- 55


• Build in regular breaks from careglvmg. You can't be a good caregiver to someone else if you don't take care of yourself. Plan for regular breaks - an hour daily, an afternoon weekly, or a day monthly - whatever you can manage.

• Relatives can help in many ways - through financial support, social support (such as calling the care recipient regularly "just to talk"), and respite care. When concerned friends and family members ask what they can do, be prepared with tangible tasks that will be of help to you and your care recipient.

• Recognize signs of denial. Statements like, "[ don't need any help", "We're fineeverything's OK", "We don't need to bother with a power of attorney", or "No matter what, I'm keeping her at home rather than consider a nursing facility", may be clues of denial.

• Join a support group - online or in your community. The National Parkinson Foundation sponsors support groups throughout the U.S. Your local Area Agency on Aging can recommend other groups that may be helpful. No matter how concerned your friends and relatives may be, it helps to meet with people who are "in the same boat" and truly understand your situation.

• Keep in mind what your care recipient's wishes are; ask for his or her input and ideas. Does your Parkinson partner still feel good about living at home? What does s/he fear or dread? (These are also good questions to ask yourself!)

• Reflect the changes in your journal. How do you feel now? What are your fears and concerns? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have brought you comfort?

STAGE III THE ENTRENCHED CAREGIVER

Who are you? You've been involved in heavy-duty caregiving for two to five years. Your involvement is probably daily, if not constant. Your care recipient may live with you - or your involvement means that your day is structured to be available to your care recipient. You begin to wonder how much longer you can manage the current level of care required.

56 --------------


Your mood is sometimes upbeat - you're proud you've been able to provide such wonderful care and make good decisions -- but sometimes melancholy, inwardly asking, "Why me - why us?" You may be mourning the loss of your partner's abilities and functions, and often long for the days before caregiving was necessary. And, you're tired.

Your purpose: To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient. This stage may be the most difficult for both of you. The changes you prepared for in Stages I and II are now a reality; you have become something of a lifeline to the family member you care for.

Action Plan for the Entrenched Caregiver:

• Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation to, but not resolution of your grief. Appreciate your grief and seek out someone who understands it.

• Forgive yourself for not being perfect. Caring for someone with a chronic illness means your world has been turned upside down and you will probably have to compromise some of your personal standards of housekeeping, etc. Accept your own humanity; even if you "lose it" sometimes, give yourself a pat on the back for doing the best you can.

• Determine your limits. How long can you care for your relative at home? What's your comfort level in providing care at home? For instance, some caregivers feel uncomfortable providing care if incontinence becomes an issue. Others determine they can provide care at home as long as others in the family can put up with the disruptions. Everyone has limits. What are yours?

• Continue making the regular breaks a priority. Your loved one can survive a few hours and periodically, a few days, without you. Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.

• Keep a log to record the details of your care recipient's needs and your caregiving responsibilities. Note any changes in his or her health condition so you can confidently discuss your concerns during doctor's appointments.

• Continue to chronicle your caregiving journey in your journal. What causes you to mourn? Where do you find your satisfaction and pleasures?

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STAGE IVTHE PRAGMATIC CAREGIVER

Who are you? You've been caregiver for more than five years. You've been through it all: hospitalizations. doctors who know relatively little about PD. rehab programs.-and a vast array of community services. You may appear to doubt the advice offered by healthcare professionals: you've been "in the system" long enough to know what works and what doesn't.

Some fami Iy members and healthcare professionals worry about your ability to find humor in situations they find offensive. They may view your attitude as

"callous" or uncaring. Far from it, you have a practical, very realistic approach toward your caregiving role: your sense of humor has been a critical tool for your survival, without which you might have given up a long time ago.

Your purpose: To gain a better understanding of yourself and your care recipient. You've settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

Action Plan for the Pragmatic Caregiver:

• Seek out joy in your relationship with your care recipient. The biggest joy-killers are your hand-on duties: bathing. dressing, incontinence care. But these duties bring you together: this is your time together. Add some fun to your hand-on care: sing songs. tell jokes, share goals and dreams.

• Try to forgive your care recipient for past hurts. Resentment toward past wrongs and injustices will make your present caregiving role very difficult. Let go of what was, and concentrate on making what is healthy and productive.

• Learn how to communicate differently with your loved one if cognitive decline or voice impairment interferes with your traditional communication patterns. A speech-language pathologist can recommend techniques to improve communication and reduce frustration.

58 -------------


• Develop a habit of enjoying shared activities. Shared time as husband-wife, mother-daughter, father-son, rather than as just caregiver and care recipient, allows you to enjoy each other and build happy memories.

• Hang on to your sense of self. Keep up your regular activities as much as possible to help preserve your identity. Take care of yourself physically and emotionally. Have regular check-ups. Eat balanced meals. Get as much rest and respite as possible.

• Begin to think about your future beyond the careglvlng role. Note in your journal what goals you hope to achieve. How can you achieve them? Can your care ~ecipient help you achieve them?

Denise Brown's descri ptive model for the careglvlng experience includes two additional stages: the "Transitioning Caregiver", who is taking care of someone in the last months of life, and the "Godspeed Caregiver", whose personal caregiving role has ended, but who wishes to mentor or otherwise make a difference for other family caregivers. See order information for The Caregiving Years: Six Stages to a Meaningful Journey in Appendix B.

CDrag your tfzouglits awayfrom your trou6{es... 6y tlie ear, 6y tlie lieafs, or any otlier way you can manage it.

It's tlie liea{tliiest tliing a 60ay can ao. -- :Mark.'Twain (1835-1910)

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LETTER TO A FRIEND

Written by Georgia "Jo" Schultz, of Madison Lake, Minnesota on behalf of her husband Bob, who has had Parkinson's disease for twelve years and still manages to drive his truck and keep busy.

Dear Friend,

I have Parkinson's disease. It's not catching or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everybody loses some dopamine cells as they grow older, but if the process happens at a faster rate, Parkinson's disease develops.

It is slowly progressive and there are medicines that can help. I'll take newer, stronger kinds of medicines over the years. Stick with me. I have good days and bad days.

Tremors - You are expecting me to shake. Maybe I will, maybe I won't. Medicine today takes care of some of the tremors. If my hands or feet are shaky, ignore it. I'll sit on my hand or put it in my pocket. Treat me as you always have. What is a little shakiness between friends?

MV Face - You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression. that's the Parkinson's. I hear you. I have the same intelligence. It just isn't as easy to show facial expressions. If swallowing is a problem. I may drool. This bothers me, so I just keep a Kleenex handy.

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MV Voice - As my deeper tones fade, you'll notice my voice is getting higher and wispy. That too is the Parkinson's disease. Listen to me. I know you can talk louder, faster and finish my sentences for me. I hate that! Let me get my thoughts together and speak for myself I'm still there. My mind is OK. The same brain chemistry that makes me slow in movement makes me talk slowly as well. I want to be part of the conversation. Let me speak.

Stiffness - We are ready to go somewhere and as I get up, I can hardly move. Maybe my medicine is wearing off This stiffness or rigidity is part of the Parkinson's. Let me take my time. Keep talking. I'll get there eventually. Trying to hurry me along won't help. I just have two speeds: slow and slower. I must take my time. If I seem jerky when I start out, that's normal. It will lessen as I get moving.

Exercise - I need to walk every day; a mile or two is about right. Walk with me. Company makes walking fun. It may be a slow trek, but we'll get there. Remind me if I slump or stoop over. I don't always know I'm doing this. My stretching, bending, pushing exercise must be done every day. How about helping me with them?

Sleeplessness - I may complain that I can't sleep. If I wander around in the middle of the night, blame the Parkinson's. It has nothing to do with what I ate or how early I went to bed. I sometimes nap during the day; let me sleep when I can. I can't always control when I'm tired or feel like sleeping.

Emotions - Sometimes I cry and appear to be upset, and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's. Keep talking to me; ignore the tears. I'll be OK in a few minutes.

Patience, my friend. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you want me to. I need my friends. I want to continue to be part of your life, and I want you to be part of mme.

Your friend,

Bob

61


l{o faugh often and much)' to win the respect ofinte[{igent peop[e

and the affection ofchi[dren)' to earn the appreciation ofhonest critics andendure the 6etraya[offafse friends)'

to appreciate 6eauty) to find the 6est in others)' to [eave the worYa 6it 6etter.,

whether 6y a hea[thy chi[d; a garden patch) or a redeemedsocia[condition)'

to {(now even one rife has 6reathed easier 6ecause you have {ived.

l{his is to have succeeded!

-- CJ(a{ph WaYo CEmerson (1803-82)

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ApPENDIX A

CAREGIVER GLOSSARY

Acute illness - a minor or major illness that develops rapidly with pronounced symptoms. Symptoms may be moderate or severe, but the duration is usually limited. Examples are influenza and a heart attack.

Adult day care - a day care center that offers health and rehabilitation services, social services, and activities to meet the needs of older persons who are physically or mentally challenged. Participants may attend full or part-time. Morning and midday meals may be included. Fees are generally reasonable compared to other respite care alternatives.

Activities of daily living (ADL) - self care tasks such as grooming, dressing, walking, speaking, keeping house, cooking, etc. One section of the Unified Parkinson's Disease Rating Scale (UPDRS) measures how well a person performs ADLs.

Assisted living facility - a residential care alternative that provides help with medications, bathing, dressing, transportation and social activities in addition to room and board. Some facilities allow small pets.

Beneficiary - the recipient of funds or other benefits from an insurance policy or will, and Medicare benefits if applicable.

Bilateral- affecting both sides of the body.

Biofeedback - a behavior modification technique that allows someone to partially control unconscious body functions, such as breathing rate or blood pressure.

Blepharospasm - forced eyelid closure (quenching); may be a side effect of the anti parkinson medication levodopa.

Cardio-pulmonary resuscitation (CPR) - combined techniques of basic life support for a person who has stopped breathing or whose heart has stopped beating. One-day courses are sponsored in most areas by the American Heart Association and the American Red Cross.

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Central nervous system - the brain and the spinal cord.

Chorea - a type of dyskinesia (abnormal movement) characterized by repetitive dance-like movements; may be a side effect of long-term levodopa therapy.

Chronic illness - a physical or mental condition that continues or recurs over a long period of time.

Cognitive function - or - cognition - refers to the ability to think, remember, plan and organize information.

Cogwheel rigidity - a "ratchet" type of muscle rigidity, most notable at the distal extremities (wrists).

Conservator - someone appointed by a court of law to manage the financial affairs of an individual declared incompetent to manage his or her own affairs. (See "guardian")

Custodial care - to assist with and/or supervise activities of daily living; does not qualify for Medicare home health care coverage.

Dependent care tax credit - federal income tax credit for certain home care and adult day care services. Inquire for details to the Internal Revenue Service (IRS) or your tax advisor.

Diffuse Lewy Body Disease - Parkinson's disease pathology has spread to many parts of the brain and is usually characterized by both parkinsonism and dementia.

Discharge planner - a professional staff member of a hospital or other care facility who works with the family to plan outpatient fol.low-up care prior to leaving the inpatient facility.

Drug holiday - the historical medical practice of briefly withdrawing levodopa after long-term treatment and re-starting at much lower doses; rarely done today because of the risks of drug withdrawal.

Durable medical equipment rOME) - medical equipment that can be re-used, usually by the patient or caregivers. Examples include wheelchairs, hospital beds, and walkers.

Essential tremor - a common diagnosis sometimes confused with early Parkinson's disease. Also known as familial tremor, onset is usually in young adulthood or midlife, and may involve head and voice tremors as well as a fine bilateral tremor of the hands.

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Extrapyramidal system - nerve cells, tracts and pathways that connect the cerebral cortex, basal ganglia, thalamus, cerebellum, and spinal neurons; regulates reflex movements such as gait and balance and is impaired in Parkinson's disease.

Festination - short, shuffling steps and an involuntary speeding up of gait.

Flexion - a bent. curved posture of the spine or a limb.

Freezing - common term for akinesia, a temporary involuntary inability to move; being "stuck in place" as if feet were glued to the floor.

Cuardian - someone appointed by a court of law to make decisions about living arrangements, financial matters, medical care and related affairs for a person deemed incompetent to manage his or her own affairs. Often used interchangeably with the term "conservator".

Health Care Financing Administration (HCFA) - the section of the Department of Health and Human Services that administers the Medicare program and some state Medicaid programs.

Health Maintenance Organization (HMO) - a managed care plan that acts as both insurer and provider of health services for an enrolled population. Benefits are usually financed through capitation with limited co-payments, and services provided through a system of affiliated providers.

Heimlich Maneuver - a first aid technique for someone who is choking.

Hoehn and Yahr Scale - a five-point staging scale to described a person's motor disability related to Parkinson's disease; originally designed to evaluate patients not on dopaminergic therapy.

Idiopathic - of unknown etiology (cause). The most common form of parkinsonism is "Idiopathic Parkinson's Disease".

Hypomimia - a mask-like facial expression characteristic of PD.

Incontinence - inability to control bowel or bladder emptying.

Indigent drug programs - many pharmaceutical companies will provide a limited supply of drugs free of charge or at a discounted rate for patients who have financial hardship. Policies vary widely from one company to another. A physician must submit the patient's request to the pharmaceutical manufacturer.

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living Will - a somewhat misleading term, since it not a true will. More often referred to correctly as advance directives, further defined in Chapter 5.

Medicaid - the federal and state government insurance programs for eligible lowincome citizens. A large percentage of the Medicaid budget in the U.S. is allocated to pay for nursing home care.

Medicare - the national health insurance program for people over age 65 and some younger people who are eligible for disability benefits. Part A covers hospital costs. Part B covers doctor bi lis and other medical costs. Patients must pay deductibles and co-payments, and make up any expenses not covered by Medicare. Many people carry supplemental health insurance ("medi-gap") policies to cover expenses not covered by Medicare Part B.

Multi-infarct dementia - cognitive dysfunction cause by a series of small strokes or changes in the brain's blood supply.

Nurses

• Registered Nurse (R.N.) - a graduate nurse with a college degree who has passed a state licensing exam to practice professional nursing in a variety of settings.

• Licensed Vocational Nurse (L VN) or Licensed Practical Nurse (LPN) - a nurse with one to two years training, who is licensed by the state to practice under the supervision of a physician or registered nurse.

• Certified Nurse Assistant - a personal care assistant trained to provide basic personal care and certified by the state as having passed a written exam and skills test.

Ombudsman services - advocacy programs to protect the rights of patients in hospitals and residents in long-term care facilities by investigating complaints, mediating and resolving disputes.

Palsy - paralysis of i1 muscle or group of muscles. An old-fashion word for parkinsonism. Parkinson's disease was originally described as the "shaking palsy".

Paralysis agitans - Latin term for "shaking palsy".

Pathology - the study of a disease process, including what is affected, and what it looks like under a microscope.

Postural tremor - a tremor that increases when hands are stretched out frontward.

66 --------------


Power of attorney - a legal document in which an individual gives another person the authority to act on his or her behalf in specific types of transactions. A durable power of attorney remains valid even if the principal becomes incapacitated. It terminates upon the death of the principal.

Primary care physician (PCP) - the doctor who manages the overall medical care of an individual. For most adults, this doctor is usually a family practitioner or internist.

Psychosis - a mental state in which the patient has lost contact with reality; manifestations include delusions, hallucinations, and paranoia.

Respite care - temporary care for an older person to allow a break for the primary caregiver; may be provided in or outside the home.

Seborrhoeic dermatitis - an inflammation of the skin common in Parkinson's disease; caused by increased oil secretion from the sebaceous glands, particularly on the forehead and scalp. Medical term for dandruff.

Senior centers - neighborhood or community centers that offer a range of services, including a lunch program, for older adults. This program ;s available nationwide and sponsored by the Area Agency on Aging.

Sialorrhea - medical term for drooling.

Stereotactic surgery - a technique in which surgeons enter the brain through a small burr hole in the skull. and use three-dimensional coordinates to locate specific targets in the brain. Examples of stereotactic procedures are pallidotomy, thalamotomy, and deep brain stimulation.

Transient Ischemic Attack (TIA) - a "mini-stroke", lasting only a few seconds to a few minutes. Can be a precursor or warning sign of an impending stroke, so is important to report to the neurologist or primary care physician.

Unified Parkinson's Disease Rating Scale (UPDRS) - a standardized rating scale used by clinicians and researchers to evaluate Parkinson motor and mental performance, activities of daily living, and medication side effects.

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ApPENDIX B

REFERENCE LIBRARY

Annotated Reading List Unless otherwise noted, the following publications. and books can be found at major retail outlets or ordered online from

www.amazon.com

Care That Works: A Relationship to Persons with Dementia by Jitka Zgola. Johns Hopkins University Press, 1999. Advice from the author's perspective as an occupational therapist. Deals with issues of communication, realistically assessing a person's ability, home design, and other topics.

A Caregiver's Cuide to Civing Medications by Carol Heerema. Prentice-Hall, 1999. A pocket handbook for caregivers with little or no medical training.

The Caregiver's Handbook by Deni Brown, for the Visiting Nurse Association of America. DK Publishing Inc., New York, 1998. Support and advice for caregivers and volunteers who assist them. Offers tips on basic caregiving and an introduction to some of the financial and legal issues involved.

Caregiver Series: Long Distance Caregiving: a Survival Guide for Far Away Caregivers: Caring for Your Aging Parents; Hiring Home Caregivers; and Keeping Active; A Caregiver's Guide to Activities with the Elderly. Impact Publishing, San Luis Obispo, California. To order, call 800-246-7228.

Caregiving: The Spiritual Journey of Love, Loss, and Renewal by Beth Witrogen McLeod. John Wiley & Sons, Inc., 1999. Author shares what she learned from caring for two elderly and ill parents; includes interesting interviews with other family caregivers.

The Caregiving Years: Six Stages to a Meaningful Journey by Denise M. Brown. Tad Publishing Company, P.O. Box 224, Park Ridgel lL 60068. Selected segments of this publication were adapted with permission for use in Parkinson Disease: Caring and Coping. Online ordering at www.caregiving.com.

Caregiver's Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love (The Working Caregiver Series), by Avrene L. Brandt. Impact Publishing, 1997.

Caring for the Parkinson Patient: A Practical Guide, edited by J. Thomas Hutton, MD, PhD. Prometheus Books, New York, 1999. A comprehensive review of diagnosis and treatment for people with PD and their families. Good chapters on fall prevention and tips for traveling.

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Caring for You, Caring for Me by David Haigler, et.a!. University of Georgia Press, 1998. Text for the hallmark caregiver training series of the same name sponsored by training program from The Rosalyn Carter Institute in Atlanta, Georgia.

The Comfort of Home: An Illustrated Step-By-Step Guide for Caregivers by Maria M. Meyer with Paula Derr, RN. Care Trust Publications, Portland OR, 1998. Winner of the 1999 Benjamin Franklin Award for Health. Easy to read, with practical instructions and clear illustrations for physical caregiving tasks. Selected segments from this comprehensive publication were adapted with permission for use in Parkinson's Disease: Caring and Coping. Available at bookstores or online at www.amazon.com. Bulk purchases available at significant discount by calling 1-800-565-1533.

Dutiful Daughters: Caring for Our Parents as They Grow Old edited by Jean Gould. Seal Pr Feminist Publishing, 1999. An eclectic and evocative collection of first person narratives by women who serve as primary caretakers of their elderly parents.

The Fourteen Friends' Guide to E1dercaring by Joan Hunter Cooper, et.al. Capital Book Inc. 1999. Practical advice, resources and tips plus ample space for personal notes and an interactive journal.

Homecare: The Best: How to Get It, Give It, and live With It by Jo Whatley Cheatham. Pro So Press, 1999. The sections addressed to clients are informative and to the point; the sections targeted to family caregivers and primary home workers are important reading for anyone serving, or thinking of serving, in that capacity.

Keeping Them Healthy, Keeping Them Home: How to Care for Your loved Ones at Home by Ellen Caruso, R.N. Health Information Press, 1998.

living the Simple life: A Guide to Scaling Down and Enjoying More (sequel to The Simple life) by Elaine St. James. Hyperion Press, New York, 1997. Many helpful hints such as how to remove your name from junk mail lists, and strategies to minimize both stress and expenses.

Unique Video Resources

The Educated Caregiver - a series of three VHS tapes, priced reasonably as single tapes or approximately $40.00 for the set. Content as well as video and audio production quality are excellent. Nice resource for new caregivers or those who are unable to attend patient/caregiver educational conferences. Order from LifeView Resources, Inc., P.O. Box 290787, Nashville, TN. 37229-0787. Or call 800-395-5433.

Activities of Daily living: Home Transfers for People with Parkinson's Disease. Video demonstrates how to assist and position changes using good body mechanics. Contact Deanna L. Deppen at Broken Cane, Inc. for more information. 2043-46th Street SW, Naples, Florida 34116. Phone/Fax: 941-290-9867.

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ApPENDIX C

HEALTH AGENCIES

AND COMMUNITY RESOURCES

Administration on Aging (AOA) Federal agency responsible for identifying the meeting the needs of older adults. Interfaces with State Departments on Aging and the Area Agencies on Aging to coordinate regional and local programs.

Advocacy Center for Persons with Disabilities, Inc. 2671 Executive Center Circle West - Suite 100 / Tallahassee, Florida 32301-5024 Phone: 800-342-0823 or 904-488-9071

American Association of Retired Persons (AARP) U.S. largest senior advocacy organization. Membership open to all persons over age 50. 60 I E. Street NW / Washington, DC 20049 Phone: (202) 434-2277 or online at www.aarp.org./caregiving

American Medical Association Publishes a 47-page, $5.00 booklet for physicians and healthcare providers: "Diagnosis, Management and Treatment of Dementia: A Practical Guide for Primary Care Physicians". To order, call (312) 464-5563.

Rosalyn Carter Institute for Human Development Sponsors caregiver training and other services to support the former first lady's commitment To human development and mental health. Conducts research., education, social policy analysis, and advocacy programs. Georgia Southwestern College / 800 Wheatley Street / Americus, Georgia 31709-4693 Phone: 913-928-1234

Children of Aging Parents P.O. BOX 167, Richboro, PA 18954 Phone: 800-227-7294 or 215-355-6611. Online at www.caps4caregivers.org

Eldercare Locator A national service sponsored by the National Association of Area Agencies on Aging. Headquartered in Washington, D.C., its mission is to identify care providers and other resources In local areas. Phone; (800) 677-1116. Online at www.eldercare.gov

Family Caregiver Alliance A resource center for families coping with chronic, disabling brain disorders. Direct services are targeted to San Francisco Bay area; literature and educational support available to others. 525 Bush Street, Suite 500 / San Francisco, California 94108 Phone: (800) 445-8106 or (415) 434-3388

70


National Association of Area Agencies of Aging (AOA) Sponsors Eldercare Locator program and regional government programs linked through the

AOA network to coordinate services for people over age 60 in a designated geographical area.

Local Area Agencies on Aging (AAA) manage senior centers with multiple activities and a

weekday lunch program most U.S. towns and cities.

Phone: (800) 677-1116 for nationwide AAA listings. Online at www.eldercare.gov

National Citizens' Coalition for Nursing Home Reform Publishes a resource and advocacy book entitled "Nursing Homes: Getting Good Care there" ($17.00).

1424-16th Street N.W., Suite 202 / Washington, D.C. 20036

National Council on Aging, Inc. (NCOA) 409 third Street, SW - 2nd Floor / Washington, D.C. 20024

National Family Caregivers Association Education, support and advocacy organization.

10605 Concord Street, Suite 50 I / Kensington, Maryland 20895-2504

Phone: 800-896-3650 or 301-942-6430. Website: www.thefamilycaregiver.org

National Institute on Aging Information Center Public clearinghouse proves free materials to the public regarding healthful aging.

P.O. BOX 8507 / Gaithersburg, MD 20898-8057. Phone: 800-222-2225.

National Institute of Neurological Disorders and Stroke (NINDS) National Institutes of Health (NIH) division assigned to research causes, prevention.

and treatment of neurological diseases. List of publications available on request.

Information Office: Building 31, Room 8A07/ 31 Center Drive, MSC2540 Bethesda, MD 20892-2540

Phone: 301-496-5751 / 800-352-9424. Website: www.ninds.nih.gov

National Organization on Disability 910 16th Street NW - Suite 600 / Washington, D.C. 20006.

Phone: (202) 293-5960. Website: www.nod.org

u.S. Social Security Administration Federal agency, which oversees retirement benefits for eligible citizens and regulates Medicare

and Medicaid programs. Phone: (800) 772-1213.

Well Spouse Foundation 610 Lexington Avenue, Suite 814 / l\Jew York, NY 10022-6006

Phone: 800-838-0879 or 212-644-1241. Online at www.wellspouse.org

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ApPENDIX 0

WEBSITES To MAKE LIFE EASIER

The National Parkinson Foundation encourages senior adults to avail themselves to simple access to the worldwide-i nternet community. There are many easy and affordable ways to access internet resources. To remain isolated, "outside the loop" of online information, is a bit like refusing to get a telephone in the 1950's!

Whether you choose a simple option like "Web TV" or get hooked up to America Online or another service provider, anyone can learn the basic skills to get e-mail and become comfortable with the "world wide web". The following websites are potentially useful to individuals and family members living with Parkinson's disease or related chronic health conditions.

National Parkinson Foundation, Inc. Education, announcements, links to related sites.

www.parkinson.org

National Family Caregivers Association Extensive education and support services for fami Iy caregivers.

Phone: (800) 896-3650. www.nfcacares.org

National Alliance for Caregiving Advocacy and support organization.

Parent site for the highly recommended Karen Henderson caregiving seminars. www.caregiving.org

Simon & Kolz Publishing - Dubuque, Iowa Offers a comprehensive workshop and support materials in basic caregiving skills.

Phone: 888-870-0483 www.simon-kolz.com

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