Grant Abrams is a physical therapist who has worked in hospital, home care, and nursing home facilities for over 20 years. He has led and co-led workshops on care-giving, life story telling, death and dying, tai chi, and yoga. He lives in New Paltz, New York. Patricia Elizabeth has given workshops in the field of end-of-life care and death and dying for over 30 years. She lives in Grass Valley, California.

Caregiver Revolution

5 Easy Steps to Enlightened Caregiving

By Grant Abrams, Patricia Elizabeth

Gateways Books and Tapes

Copyright © 2011 Grant Abrams and Patricia Elizabeth
All rights reserved.
ISBN: 978-0-89556-148-0

Contents

Prologue,
Foreword – Why Did It Take 20 Years?,
How To Use This Book,
Introduction – Help Yourself By Helping Others,
Step 1 – Get Organized And Take Care Of The Basics,
Step 2 – Manage Your Stress,
Step 3 – Strengthen Your Caregiver Presence,
Step 4 – Help Those In Transition,
Step 5 – Provide Spiritual Care & Support,
Exercises And Activities To Help Prepare For Death,
Appendix A: Bibliography,
Appendix B: Websites For Caregivers,
Appendix C: Supplementary Exercises,
Appendix D: Spiritual Assessment Tools,
Appendix E: Religious Practices and End of Life Rituals,
Appendix F: Questions About Doing Readings,
Appendix G: The Stages of Dying,
Appendix H: Anecdotes and Personal Accounts Of Reading Experiences,

CHAPTER 1

Step 1 – Get Organized And Take Care Of The Basics

We are assuming that you, the hero of our story, are caring for someone in your own home, someone who lives nearby, or a distant relative or parent. Your parent or loved one may even be in a nursing facility or hospital. You are involved in your loved one’s care, an integral part of the caring circle that surrounds them. In this book we call that person your loved one, care partner, friend and sometimes we even use the word patient. We use he and she interchangeably. Sometimes the word “caree” is used online and you may find it in some of our referenced works.

You’re Not Alone

Right now more than 50 million people provide care for a chronically ill, disabled, aged family member or friend during any given year. That number is increasing. Over three-quarters of adults living in the community and in need of long-term care depend on family and friends as their only source of help.

Approximately 60% of family caregivers are women. The typical family caregiver is a 46-year-old woman caring for her widowed mother who does not live with her. She is married and employed. In addition, 17% of family caregivers are providing 40 hours of care a week or more.

Keep this picture in your mind: A 50-year old woman who is married and trying to hold down a job. The chances are about one in three that she is also raising a child. Typically, she is helping her mother, a 77-year-old widow who is either living nearby in her own home or with the daughter. Only about six percent of those being cared for are in nursing homes; three-quarters need care due to a long-term physical disability and nearly one in six is suffering from dementia or “confusion.”

This daughter has been caring for her mom for an average of four years, and she is spending about 20 hours a week helping with grocery shopping, rides to the doctor, housework, making meals or more intensive assistance such as helping her mother bathe, walk, or even get up from her bed or chair. About one in three caregivers are helping their loved one get dressed or to the bathroom. Among those who work, nearly two-thirds take time off during the workday, 17 percent take a formal leave of absence from their jobs, and 10 percent quit or take early retirement. http://www.nfcacares.org/who_are_family_caregivers/car e_giving_statstics.cfm#1

The biggest burden of all, however, is on elderly spouses. They spend more than 30 hours a week caring for loved ones. They are more likely to be doing the difficult work of assisting with activities such as bathing. Yet, they are often doing this on their own, without help from relatives or friends. This situation is obviously fraught with stress, but by learning from others and applying the principles outlined here, you can transform it. You can make it better.

Learn From The Pros

As a physical therapist who’s been doing this work for many years, I’ve seen the full gamut of caregiving in all sorts of different settings, from hospitals to nursing facilities to rehab centers to hundreds of homes just like yours. I have observed the truly excellent caregivers; ordinary folks who are taking care of a client, loved one, parent or spouse in a magically competent, skillful and relaxed way.

It started when I did a physical therapy internship at a hospital in Brooklyn back in 1989. I discovered that I was learning more from the therapy aide, an elderly gentleman, than from any of the therapists. He treated everyone who came to the therapy gym as if they were special. He always found time for conversation and never appeared rushed even though everyone was expertly attended to. There was a magic in what he did and I was intrigued.

Several months after this assignment, I worked with a physical therapist, Ted Corbitt, who had the same quality. He was a quiet, unassuming 70 year old gentleman who usually had a slight smile on his face. He was a former Olympic marathon runner who had won many long-distance races in and around New York City and he still ran more than 10 miles to work, from north of the city to East 24th St. in Manhattan.

People lined up for Ted’s therapy services because he had a masterful touch and an intuitive healing sense. Above all, it was his pleasant demeanor, courtesy and complete focus on his work that I admired. He attended to every detail with precision.

When Ted taught an in-service, an hour would be spent going over such things as patient set-up and positioning, draping, covering, body alignment and many other seemingly insignificant particulars. All these details had to be taken care of before we applied our hands to the patient.

When Ted worked with a patient, he made her feel that she was the most important person in the world. He gave her his full attention. Though not the least bit obsessive, he made sure that every small thing was done correctly. The small things added up and one couldn’t help but notice that it made a huge difference.

It’s All In The Details

I’ve run into many special people in care-providing situations throughout the years. All have the same eye for detail. For example, one couple I knew was very active in a singing group that performed in various nursing homes in the Hudson Valley area of New York. The husband fell ill and upon return home from the hospital it didn’t seem that he’d ever walk again. He was terribly weak with severe arthritis in his knees.

Within three weeks he was getting into his wheelchair, going out to the car on an improvised ramp, pivoting into the passenger seat and going to the sing-alongs. I was absolutely dumbfounded.

Then I took a closer look. I realized that his wife, who was actually a professional health aide, was incredibly organized in planning his mobility, transfers and activities. She and her husband focused on one goal – to get back to the sing-alongs, so everything was oriented to this, including the arrangement of the home, their daily schedule and his therapy sessions. In his physical therapy sessions, everything we did had a practical orientation, to get out of the house and into the car. This manifested in an amazing recovery. The fact that he was a tough old bird didn’t hurt matters either.

What I most admired about this couple was their attitude. They had the details organized and their goals were specific. If something unexpected came up, they didn’t get flustered, they just dealt with it. They were always upbeat, optimistic and they kept their sense of humor. This undefinable quality that combines caring, focus, and humor is the caregiver’s secret weapon.

When I leave a place where I’ve admired a clinician or where the caregiving formula is working particularly well, I go over the situation in my mind and try to figure out exactly what made it work. If I really had to summarize it, I would say it as follows:

The best caregivers are those who have acquired some experience yet remain open to experimenting and learning new tricks of the trade. They are organized, do the basic things correctly, have well-defined goals, and don’t stress about the big picture. They can laugh at themselves and accept their mistakes.

Does this formulation sound surprising, spiritual, or earth shattering? Of course not! But I can’t tell you how many people expect competent caring to be an easy task with no skills, learning, or mistakes involved. They think that they should know exactly what to do when their parent or spouse comes home sick from the hospital. This is clearly not the case, as many of us have come to find out.

How Things Have Changed

We may wonder why it’s not like the old times when older family members could simply return from the hospital and fit right back into the home. Why has caregiving gotten so difficult?

1. Hospitals are discharging people quicker and sicker than ever before. Complicated follow-up regimens and medical or medicinal procedures are often involved and discharge instruction is limited.

2. Family dynamics have gotten more complicated over the past few years. Women are working longer hours and there are more non-traditional and extended families. The “primary caregiver” may include several people. They have to communicate extensively and arrange schedules to coordinate care.

3. The “independence trap” makes it hard for caregivers to ask for help. “I can do it,” and “I don’t need any help,” are phrases that professionals often hear from soon-to-be-beleaguered spouses and families. The independence trap comes out of a belief system in the western world which equates maturity and strength of character with going it alone. (Witrogen Mcleod 20)

4. Our economic system can no longer support the burgeoning aging population. This puts more financial pressure on the spouses to continue working and gives them less money for medications and supplemental care (which, by the way, are getting more expensive).

5. Chronic long-term illness has become more prevalent over the past 20 years and dying has become a slower, more gradual, process. Much longer near-critical care periods are becoming increasingly common with repeated admissions to the hospital.

6. Caregiving quickly turns into a matter of sheer endurance. After a few weeks, little things that seemed doable in the short term, pile up and become unmanageable. People don’t know which way to turn and get overwhelmed. This, in turn, sets them back further … it can be a downward spiral.

Beginning Steps

We have to face the fact that the caregiving world is much more complex than it was just 10 years ago and that caregiving will be a challenge! Many excellent books have been written to help the caregiver with the initial preparations in the home and you can find them listed in our bibliography.

We want to mention a few things that you should do right at the very beginning of your caregiving experience. These things are so important that they can’t wait another minute:

• Educate yourself about your loved one’s disease.

• Identify unrealistic expectations, especially your own.

• Seek and accept support.

• Identify what you still have rather than what is lost.

• Let go of what cannot be changed. (Schmall 5)

What do you know about the specifics of your loved one’s condition? Have you done some research, gone to the library or talked to your doctor? How do you expect things to be in a week, a month, a year? Is this realistic in terms of what you have found in your research? What will you do if things don’t turn out the way you expect them to? Who can help you?

Start organizing your care circle, your friends and resources in the community. This is important! Focus on the positive components of the situation and work with what you’ve got.

Now, in case you thought that wasn’t enough, here’s another list of some initial things to do, from Today’s Caregiver Magazine:

Keep track of medications, throw away old medicines from the medicine cabinet, set up a calendar of appointments, keep copies of medical records, attend to filling out advance directive and will, organize your financial records and have a home, life and long-term insurance analysis done. (Barg 31)

You thought this would be easy? Thought you could do it alone? Caregiving is a skill and there are many complicated factors involved.

Competent caregiving can be learned if it is approached in an organized way, as a skill with a well-defined learning curve. You’ll need patience. Consider: every clinical person you’ve been dealing with in the hospital has at least 2 years training. Do you think you can learn all of their jobs overnight? Probably not, but you can learn the basics in a short time. I know this because I have seen the folks just like you who have mastered the fundamentals and become excellent caregivers.

You’ll need to learn some new skills – caregiving skills. And remember, as difficult as it might be, this is also an opportunity to spend some time together in a meaningful way that holds possibilities for both you and your care partner.

You’ll get better with practice. You may even start to enjoy it. It’s a proven fact that previous exposure to caregiving reduces caregiver stress; i.e., the more you work at it, the better and the more relaxed you’ll get.

Break Tasks Into Manageable Steps

Caring for your loved one may seem completely overwhelming at this point. It’s probably involving more time and energy than you would have ever imagined. Here’s an exercise to help you get it under control:

Tonight, for just five minutes, sit down with a cup of tea and write down the details of a typical day’s care, listing essential tasks only. Break the day into sections. Eventually you’ll break these sections into modules and then even smaller tasks. You only have a short time to work on this tonight so don’t get too detailed. After five minutes, put the list away and work on it again tomorrow … for five minutes only.

Some of the activities that might come up in your analysis are: washing up in the bed, getting out of bed, getting to the bathroom, using the commode, grooming, bathing, dressing, preparing breakfast, taking morning medications, cleaning up the bed, making the bed, situating your loved one for the next few hours, preparing for nursing or therapy visits, making appointments, turning on The Price is Right, preparing lunch, taking mid-day meds, toileting, transferring back to bed for a nap … etc., etc., etc.

Can you see the point of this? You are getting organized. Keep working on your list … give it a solid week of five minutes a day. Just the act of listing will help you discover more and more details and more solutions to the scheduling of different tasks.

Inch By Inch …

As you do this exercise, don’t be surprised if your days become a tad more manageable. As a good friend used to say, when people were starting to walk again in physical therapy, “Inch by inch, it’s a cinch.” Start by standing up with the walker, march in place by the bed, walk two feet, three feet, then five feet … etc. It adds up.

Keep this step-by-step progression in mind for every activity.

In the case of progressing mobility, for example; if your loved one can’t get out of the bed, start by simply moving his legs toward the edge of the bed. Then go back to the regular lying position. Later in the day go a bit further, maybe dangle one leg over the side. Then, next session, dangle both. Next, help your loved one to sit up on the side of the bed, with support … maybe some pillows behind him, then with just supervision and maybe a table in front. Then, with two people helping alongside, stand with walker. If this isn’t possible, try to pivot into a chair placed alongside the bed (some people won’t be able to stand, but still can bear enough weight to pivot). See how it goes? Break any activity into steps. It will make it much easier. It does take patience. In fact, patience is a very real and practical tool that you are developing here.

If you view patience as a tool that you are learning to work with more skillfully, it will make your caregiving experience more rewarding.

You will benefit more and more from the exercises in this book as you establish some degree of patience toward others and yourself. Take your time. Think of caregiving as a labor of love, and remember … it does get easier.

If you need practical help with organizing the activities of the day, we heartily recommend The Complete Eldercare Planner. This, or any number of online resources (of which the excellent publication, The Family Caregiver Handbook, is a shining example) will give you a system to help you to organize and navigate through the first few weeks in setting up the caregiving environment. (http://www.dshs.wa.gov/pdf/Publications/22-277.pdf)

Just to help you get started, here are a few things you can do to make your home more caregiver-friendly. Try to implement some of these, and at the same time, we suggest that you start making arrangements to get some professional services in your home.

A Few Practical Suggestions

As a home care physical therapist, I would recommend that you set up the following modifications before or shortly after your loved one comes home from the hospital or from rehab:

1. Two hand railings on stairs. I wouldn’t put this first if it wasn’t the most important. It may take some creative construction, especially outdoors, but having two railings will really pay off in the end.

2. Rolling walker with plastic caps or tennis balls on the back legs. Or, a 4-wheeled walker with brakes and seat if it fits through the doorways of your home. The 4-wheeled walkers are getting more popular because they are better for outside use. Your loved one can walk until he gets tired and then he has a ready-seat at his disposal.

3. Transfer tub bench (she can sit on the outside of the tub and slide in) and hand-held shower attachment.

4. Grab bars in the tub or shower and by the toilet, if no commode is available.

5. Three-in-one commode over the toilet by day and for use by the bedside at night.

6. A small bed rail that attaches to the bed frame can make getting in and out of the bed much easier. A small stool by the bed can also help getting legs in and out of the bed.

7. lear up clutter on the floor, near doorways, in bathrooms and take up the throw rugs!

8. Acquire grabbers, sock donners, shoehorns and all manner of devices to help get dressed. These are usually recommended by the occupational therapist. Often these are sold as kits. Buy one, they’re worth it.

9. A wheelchair can come in handy and make the home situation much safer. You can rent them by the month. Make sure the legs go up and down, are removable and are adjusted to proper leg length by the therapist or technician. Make sure that you have a cushion. Every wheelchair that is delivered should have at least a basic cushion as Medicare does pay for them. Your doctor simply has to include the word “cushion” on his prescription for the chair.

10. Power-elevating recliner chairs, which tilt up and forward to help with standing and recline for comfort during the day (or night). These are becoming more and more affordable and are one of the best additions to a home. They give your loved one more independence, comfort and better posture. Highly recommended!

(Continues…)Excerpted from Caregiver Revolution by Grant Abrams, Patricia Elizabeth. Copyright © 2011 Grant Abrams and Patricia Elizabeth. Excerpted by permission of Gateways Books and Tapes.
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