The Accidental Care Giver

#workbook #client #gedit3

The Accidental Care Giver

You may have heard this before: Put a frog in a pot of water and set the burner to simmer. If the change in temperature is sufficiently gradual, by the time the frog experiences pain, it will be too late to escape. (Please don’t try this at home.)

Could you be that frog? It starts simply. While shopping, you pick up a few items for your elderly, widowed father. As time goes on, you get more and more items for him and make extra stops at various stores. Before you know it, you’ve taken on all his shopping and errands. Next, the laundry becomes too difficult for Dad. So, being the dutiful daughter, you’re now washing, drying, and folding his clothes. Then, Dad begins to have difficulty cooking so you bring over a couple of meals a week. Then, well, you get the picture. Before you know it, you’re neglecting your own household and work responsibilities and are so stressed you’re ready to implode.

And what does Dad think about your help? He thinks he needn’t spend any money on his care because “my daughter takes care of it.” He has learned to take your assistance for granted and so have you. Both of you forget how much you do and how long it takes to do it. If Dad has dementia, it’s even worse; he may forget all the “little” things you handle.

While Dad is proud of his ability to live “independently,” you, being human, are growing resentful of the increasing time you spend caring for him. So you bring up the possibility of hiring help and come up against his attitude towards money; i.e., he doesn’t want to spend any. He may even play the guilt card to ensure that you continue to pick up all the chores he’s no longer capable of handling. So there you are, boiling, and you can’t jump out.

Here’s another example of a caregiver in a pot. Your wife, who suffers from multiple sclerosis, is experiencing a steady decline and is becoming dependent on you for all of her care. She can no longer move from her wheelchair without help, so you must be with her all the time. Actually, someone must be with her, but she will accept help from no one but her husband. She is unwilling to recognize the amount of stress that results from providing constant aid, and you are unable to identify and state your needs. The situation moves to the breaking point when you are diagnosed with cancer and must undergo chemotherapy.

Getting That Call

On many occasions (perhaps the majority of them), I’ve got that call from an accidental care giver, a family member of an elder who can no longer fend for him- or herself, and has gotten used the family member sliding into the role as the care giver. And, likely, the caller will be frustrated with the elder, and perhaps with other family members, over who is doing what and who isn’t. For these reasons among others, my first meeting with the family might be full of conflict.

Summary Points

  • Accidental care givers find their entire lives have been taken over with responsibilities for the elder.

  • The elder, even if well-off, may resist spending money on services.

  • An initial family meeting may be full of conflict and resentment.

Initial screening phone call

#workbook #screening #gedit3

Initial screening phone call

I offer a twenty-minute screening call to potential clients. The screening is to clarify (1) Who’s the client? (2) Do I provide the services the caller is seeking? (3) Am I currently accepting new clients for the services the caller is seeking? (4) Are the services being sought likely to be consultation, ongoing care management, or both? And, after these questions are answered, if the caller wishes to proceed (5) Who will be the billable party? (6) Who will be at the initial consultation, and why?

Obviously, getting new clients is good for business; I like to eat as much as the next person. Nevertheless, I consider screening mutually beneficial. There are reasons I may or may not want to take on a client, and there are reasons they may not want to hire me.

I might be too busy in either the short term or the long term to provide the services they need. If their needs can wait, and they’re still interested, I’ll tell them to get back to me at a certain date.

When the services I provide don’t match what they’re seeking, I’ll refer them to other services.

Who’s the client

Identifying the client is usually straightforward. The client is the person who’s in need of care and/or planning for their future care. Typically, the initial contact is with the adult child, whose parent(s) may be suffering from the onset of cognitive impairment, or a physical ailment for which they need ongoing care, or a number of other difficulties related to aging. I inform the caller that, regardless of who pays my bill, my recommendations are based solely on the client’s needs for current and future care.[^I state that repeatedly in this book.] I also make it clear that I consider the client’s financial resources. First principle is to not add to a client’s problems.

The message that my concern is solely with the needs of the client alerts callers that, regardless of their assumptions, my focus will be on their parent (or in some cases, parents). I say this up front because, while uncommon, adult children may have an unspoken conflicting interest. Why unspoken? That can range from a secret conflict with another family member to an adult child who cares more about their inheritance than the well-being of their parent. (I discuss this further in the chapter, When things go wrong.) Most often, my message puts callers at ease: “I’m so glad to hear that. It’s exactly what I was hoping for.”

There are occasional exceptions to the identified client being the person in need of service.[^See the chapter, Who’s the Client?] A lawyer may contract with me for a narrative assessment of his or her client, or to research a specific topic. (See Working with lawyers.) Or a guardian may hire me to perform a specific role for their client.

When callers ask about my background, experience, and services, it may indicate that they’re researching options. I don’t bother to sell myself. In the long run, people defend their careful choices, but turn on those they feel manipulated them. I demonstrate my expertise through pointed questions. After we’ve both gone through our questions, I refer them to my website for additional information.

Callers’ questions suggest what services they’re seeking. If the questions are vague and/or anxious, I seek clarification why they’re seeking help, and why now? If they’re dealing with a crisis, I determine if I can help, immediately, or if they need a referral to an emergency service. I let them know, if they desire my services after the emergency has been dealt with, they can contact me again.

For example, to a caller who describes an elderly family member who’s suffered a fall and displays confusion, my first question is, “Has this been reported to the primary physician?” After discussing the issues and obtaining the caller’s contact information, I advise that they immediately call the primary physician for a medical assessment.

Why I might turn down a potential client

I might turn down clients if they’re not within my practice focus, or are outside my comfort zone, or are unmanageable within my current caseload.

Early in my career, I decided I would not supervise other service providers, such as private caregivers who are hired by a client or their family. Because I’m not the private caregiver’s employer, I’m unwilling to assume responsibility for the quality of their service. For example, if a caller wants to hire someone to set up and oversee 24-hour homecare, I refer them to an agency that provides that.

Further examples of who I refer out are clients who exhibit signs of dementia and paranoia, while having access to guns, and clients who use illegal drugs. In the former case, I would accept the client if the firearms were removed. In the latter case, I would refer the client to a drug counselor.

As a sole practitioner, when screening referrals, I must keep in mind my workload. If I’m devoting many hours to ongoing care management clients, I limit new clients to those needing only brief consultation.

These are lines I draw. You’ll have to define you limits and limitations, based on your expertise and the evolution of your practice.

Consultation, or ongoing management of care?

When someone calls to discuss my services, they usually have an idea of what they want. They may not be able to state that they want consultation or that they want management, but I can often determine that during the screening. If they’re undecided, the decision can wait until our first meeting.

Who will be the billable party?

I determine the billable party before the initial consultation. I refer the caller to my service agreement and disclosure on my website. If there’s a question who will pay the bill, I ask the caller to resolve that issue before the initial appointment. Most often, the spouse or the adult child who’s the durable power of attorney (DPOA) for the client assumes payment responsibility.

Who will be at the initial consultation, and why?

I may ask that the client be excluded from the initial consultation. If the client suffers from dementia, it can be stressful if their cognitive status and need for care are discussed in their presence.

At times, the DPOA may bring up whether the client should or shouldn’t participate in the initial consultation. If they don’t bring it up, I do. I want to gather information, without causing stress to my client.

  • What Services are they seeking, and do I provide them?
  • Is it an emergency?
  • Who’s the client? Who do I bill?
  • An I accepting new clients?
  • Who will be at the initial consultation, and why?

The Client — Why Are They Doing This To Me?

Rose is a 78 year-old woman living alone in her condominium. To family, friends, and neighbors, she seems to be doing well. She is in good health and remains physically and socially active. Her adult children call “bright” and note her steady interest in reading and current events. She views herself as competent and independent and is proud of her intellect.

Rose begins to notice that her keys aren’t where she recalls leaving them. She is uncertain if she paid her phone bill and can’t find her checkbook. She leaves a pan of soup on the stove until she is alerted by the smell of burnt food. She forgets a lunch date with a friend.

No big deal. She finds her keys. She finds her checkbook. She pays her phone bill. She throws out the burned pan. She apologizes to her friend] and schedules another lunch date.

Although these forgetful incidents continue, Rose doesn’t mention it — there’s nothing to discuss. She doesn’t want her children to think she needs help, and she’s not interested in making changes. Nevertheless, the burned pan gets her worried, so she stops preparing meals and turns to snacking. No big deal, she’s never had a big appetite and eating less is fine.

Rose is distressed, however, when she notices she can no longer follow a novel to the end. She forgets who the characters are and begins to mix up their motivations. Nothing like this has ever happened to her. And still, she tells no one. She is competent, independent, and intelligent.

Unfortunately, Rose’s poor nutrition makes her vulnerable to illness and she catches pneumonia. She is hospitalized and a dramatic change in her behavior is noted. She doesn’t want to take prescribed medications and tries to leave the hospital. She is transferred to a geropsychiatric unit and extensive evaluation determines that she has deterioration of the brain consistent with dementia. Once Rose is stabilized on medications to calm her, she’s transferred to a nursing home that has a secured dementia unit.

Rose had been experiencing gradual cognitive decline but did a good job of hiding it. However, eventually, she underwent rapid physical decline and accompanying change in behavior that required dramatic medical intervention.

To understand Rose, let’s step inside her head. You’re living on your own and have tricked yourself into believing that the changes you see in yourself do not require changes in your day-to-day life. You continue to be proud of your intellect and competence and want to be damn sure that others are proud you too, especially your children.

You get sick and delirious. Medical professionals you don’t know and have no reason to trust are giving you pills and preventing you from leaving. You want to go back to your condo and resume the life you enjoy. And you desperately want to get back to your old self, the self you are proud of. There is nothing familiar about this place, nothing that reminds you of who you are. But you’re surrounded by people — doctors, nurses, aides — who are in-your-face with their ignorance of who you are.

Take your medications. You have to stay here. No, you can’t leave. We’re just trying to help you.

They see you as sick and suffering, unappreciative and uncooperative. They have no idea who you are, who you have been. They do not know your story. They do not see you.

And then you are in a secured (locked) unit. You have never had to wonder what was beyond a door. You just walked to it, opened it, and walked to the other side. And your mind, your innate intelligence, has allowed you to open many figurative doors to other worlds. Now, an all-too-real door is closed to you.

Now I ask you, wouldn’t you want to go out that door?

Introduction to a Career

Introduction to a Career

If you were anything like me, when you were a small child, you yearned to be a care consultant. You dressed in care consultant costumes on Halloween. You asked for care consultant outfits for birthday gifts, and you asked the multicultural gift-giver of your choice, sometime around the winter solstice, to deliver care consultant action figures. Your parents humored you, realizing that you’ll grow out of this fantasy because, when you were growing up, there was no such thing as a care consultant.

I began working with elders in 1984, but I didn’t start calling myself a care consultant until about a decade later. Even today, hardly anyone labels themselves as such, sticking with the more well-known term, care manager. Yet, there is a significant difference between their roles. In short, a care consultant guides the concerned parties — usually, family members of the client (who is the elder, or otherwise, infirm) — to appropriate services. This typically requires a thorough assessment of the situation that includes the needs and wishes of the client, and an agreement among those involved in the care decisions (usually, the family). If the family is unable or uninterested in managing the ongoing care, they often hire a care manager to do so. About one-third of the time that I’m hired for care consultation, I am retained in the role of care manager.

Schooling and Training

While you may have guessed that I didn’t really plan, let alone “yearn” to be a care consultant as I was growing up, I did plan to be a social worker for as long as I can remember. However, my work with elders came from an indirect route.

Before grad school, I did some work in an in‑patient hospital setting, and became determined to work with the severely mentally ill. Following getting my MSW, I took a position working in a residential treatment center for chronic schizophrenics. During my five years there, I rose to Program Director. Moving on from that program, I followed my husband-to-be to a small town, where the only opening in the counseling center was director of geriatric services. I was hired for my supervision experience, as I had no experience with elders.

My former grad school classmate and close friend had been working with elders since graduation. My agency agreed to pay for her long distance supervision, via phone calls. With her help, I managed my own work, supervised a nurse and clinician, and earned State recognition as a Geriatric Specialist.

The last decade, has seen care consultation/management programs spring up as a geriatric specialty, taught primary by academics, who probably have never done clinical work. As with any clinical profession, knowledge and theory can help you only so far. That’s why health-care professionals do internships and residencies.

Clinician-lead care consultation and care management training is still rare. This course book is an attempt to guide new practitioners into the profession, whether within a college training program or through self-education.

Principles for review

  1. A care consultant guides the concerned parties — usually, family members of the client (who is the elder, or otherwise, infirm) — to appropriate services.
  2. A care manager manages the services.
  3. Care consultation and care management are clinical, not academic, vocations.
  4. Though the demand for trained professionals is growing, rapidly, appropriate training is still rare.
  5. This course book is designed to be an aid to that training.

Getting Old isn’t for Wimps

#workbook #client #gedit3

Getting Old isn’t for Wimps

Getting old isn’t for wimps

_Unknown

Joe Montana, one of the most accomplished professional athletes of all time, played into his late 30s. He was asked — with four Super Bowl victories and two most valuable player awards, but at the cost of accumulated injuries — why he kept playing? His answer: “What if someone told you that you will never get to do again what you love the most?”

Moving into old age brings a series of all the things you’ll never get to do again: loved ones you’ll never get to see again; ideas your mind will not be able to contemplate, no matter how smart you once were; places, such as your beloved home, that you’ll never live in again; memories you’ll never have again; social status you’ll never enjoy again; and, for many, the biggest insult of all, personal independence you’ll never have again. Getting old is an insult to your self-esteem, to your physical comfort, to your identify as an adult. No wonder the elderly yell at folks to get off their lawn.

It’s not all bad: young grandchildren to spoil, then home to their parents to deal with the consequences; no dreary job to go to or worry about being laid off; free or cheap health care; discounts; for many, fewer financial worries; less need for shopping, as you probably have enough clothes to last your lifetime; you’ve bought your last car, your last home, and last pair of Nike Jordans; failures, forgotten, successes, remembered (maybe, even enhanced); and finally, you’ll never be tempted to look like this

<img src="http://jaggednoodles.files.wordpress.com/2011/10/hipsters21.jpg” alt=”hip.jpg 200×165pixels” />

If you describe the elderly as cute, intolerant, dumb with technology, or other condescending labels, think again. We find young children cute, because they’re innocent of most of life’s experiences. By definition, older people have more life experiences than younger people. Intolerant? Everyone is more comfortable with the world they grew up in, because they are experts in negotiating that world. Same for technology. Familiar is easier, but don’t forget, older people dealt with less automated machines, less technology that (to borrow from the old Apple motto) just worked. Telling Siri to place a phone call does not make you more clever than someone who dialed rotary phones for much of their lives.

<img src="http://i.kinja-img.com/gawker-media/image/upload/s–vQwumqr0–/vew9s5fjhemf8bquhz6r.jpg” alt=”vew9s5fjhemf8bquhz6r.jpg 285×176 pixels” />

To say that old people don’t like change is silly. With decades behind them, most older people have survived many downs, and have a wide repertoire of adapting to change. They just don’t like turns for the worse any more than anyone else does, and they’ve had more of those than have most younger people. As I stated above, turns for the worse will continue. In more detail, as you get older, you must adapt to numerous unpleasant changes:

  • Loss of family
  • Loss of friends

  • Loss of vision

  • Loss of hearing

  • Loss of mobility

  • Loss of memory

  • Loss of independence as in ability to drive, care for self, etc.

  • A shrinking support system

  • Decreased abilities

  • Fewer choices

  • Decreased activity

  • Decreased socializing

That’s a lot of losses. Old age isn’t for wimps.

As a care manager/care consultant, you have an opportunity (and often, a responsibility) to be the most effective member of their non-familial support team. That team may include doctors, nurses, and other medical personnel; caregivers; a bill payer; one or more lawyers; a member of the clergy; a power of attorney (a relative, or not); a spouse or partner; an adult daughter or son; a brother or sister; and so on. These people may all agree on proper care. And lions may lay down with lambs.

As a care manager, you are the candidate to be the one who knows and coordinates how all these professionals will work with your client. As a care consultant, you may be charged with getting those lambs and lions to co-exist. Being a care manager/care consultant is not for wimps either, but as with most challenging professions, training, support, skill, and experience will make for a satisfying career.

Priniciples for review

  • Your clients are experienced with life, more than those who care for them.

  • While losing certain physical and cognitive facilities might make you dependent, it does not make you a child.

  • Old age brings mourning for many kinds of loss.

  • There are some good things about getting old.

  • The care manager/care consultant profession is demanding and satisfying.

Intake and the Intake Form

#workbook #FirstContacts #gedit3

Intake and the Intake Form

This describes the nuts and bolts of intake. Involvement and negotiation with the family is covered in the working with families section.

I ask my client or their representative to bring a copy of their durable power of attorney (DPOA) document to our first appointment. This document identifies them as a decision-making authority for the client. In addition, I ask that they provide the client’s diagnoses and current medication prescriptions.

During the balance of the meeting, we clarify the client’s issues (the reasons I’m being consulted), make an agreement on the services I will provide, and I collect the information necessary to provide those services. I gather the following to fill my intake form:

Demographic information

Date services are initiated; the date of revisions. With ongoing care management, I often complete a new intake form when significant changes or additions are made.

Name, date of birth, age, sex, marital status, address, phone number(s). Does the client live alone or with others? Medical insurance (Medicare, or other), and I restate that my services are not covered by insurance. Preferred hospital.

Presenting problem/identified needs

I note what problems and needs my client, or my client’s representative, identify.

Care plan

A brief summary of the plan I will assist my client with. This is helpful if specific actions will be taken soon.

Emergency contacts, DPOAs and involved parties

Emergency contacts includes the names, relationship to the client, phone numbers, and emails of individuals my client has given me permission to communicate with, regarding my client’s status and care. There is likely to be an overlap with the client’s DPOA(s) for medical and financial decision-making.

Involved parties may include home care agencies, private care givers, bill payers, financial advisors, housekeepers, and close friends who provide care or support. Involved parties may also include a visiting pastor, Eucharistic minister, Rabbi, or other faith, or wellness practitioner, such as a meditation coach or masseuse.

Medical information

I record diagnoses; medications that includes over-the-counter drugs, vitamins and supplements; and name and contact information of their primary physician. Medical history is taken, when relevant to current care. If I’m to provide care management, I need the names and contact information of all involved physicians. I record the names of additional medical services such as physical, occupational, or speech therapy.

I note assist devices (cane, walker, wheelchair, medical alert button), if my client wears glasses or hearing aides, or if they use a pill box to help them take medications.

If I will be managing my client’s care and attending their doctors appointments, I may need their pharmacy contact information.

Additional information

Information that does not fit in the above categories: the client’s faith, cultural background, sexual orientation; ongoing involvement in a service organization, or a relevant education or work history.

Miscellaneous

The referral source.

Prinicpals

  • A through recording of the information necessary to provide your services.
  • Legal (DPOA)
  • Medical and related
  • Involved professionals
  • Involved family and friends

Preface

If you were anything like me, when you were a small child, you yearned to be a care consultant. You dressed in care consultant costumes on Halloween. You asked for care consultant outfits for birthday gifts, and you asked the multicultural gift-giver of your choice, sometime around the winter solstice, to deliver care consultant action figures. Your parents humored you, realizing that you’ll grow out of this fantasy because, when you were growing up, there was no such thing as a care consultant.

I began working with elders in 1984, but I didn’t start calling myself a care consultant until about a decade later. Even today, hardly anyone labels themselves as such, sticking with the more well-known term, care manager. Yet, there is a significant difference between their roles, which I’ve described [elsewhere]. In short, a care consultant guides the concerned parties — usually, family members of the client (who is the elder, or otherwise, infirm) — to appropriate services. This typically requires a thorough assessment of the situation, which includes the needs and wishes of the client, and an agreement among those involved in the care decisions (usually, the family). If the family is unable or uninterested in managing the ongoing care, they often hire a care manager to do so. About one-third of the time that I’m hired for care consultation, I am retained in the role of care manager.

Schooling and Training

While you may have guessed that I didn’t really plan, let alone “yearn” to be a care consultant as I was growing up, I did plan to be a social worker for as long as I can remember. However, my work with elders came from an indirect route.

Before grad school, I did some work in an in‑patient hospital setting, and became determined to work with the severely mentally ill. Following getting my MSW, I took a position working in a residential treatment center for chronic schizophrenics. During my five years, there, I rose to Program Director. Moving on from that program, I followed my husband-to-be to a small town, where the only opening in the counseling center was director of geriatric services. I was hired for my supervision experience, as I had no experience with elders.

My former grad school classmate, and close friend, had been working with elders since graduation. My agency agreed to pay for her long distance supervision, via phone calls. With her help, I managed my own work, supervised a nurse and clinician, and earned State recognition as a Geriatric Specialist.

The last decade, has seen care consultation/management programs spring up as a geriatric specialty, taught primary by academics, who probably have never done clinical work. As with any clinical profession, knowledge and theory help you only so far. That’s why health-care professionals do internships and residencies.

As the foreward states, clinician-lead care consultation and care management training is still rare. This course book is an attempt to guide new practitioners into the profession, either within a college training program or, if necessary, through self-education.

Principles for review

  1. A care consultant guides the concerned parties — usually, family members of the client (who is the elder, or otherwise, infirm) — to appropriate services.
  2. A care manager manages the services.
  3. Care consultation and care management are clinical, not academic, vocations.
  4. Though the demand for trained professionals is growing, rapidly, appropriate training is still rare.
  5. This course book is designed to be an aid to that training.