A Family Caregiver Speaks Up

Suzanne Geffen Mintz, Capital Books
A Family Caregiver Speaks Up


Building Confidence and Capabilities: Making Choices, Taking Charge

YOU are the only person who can take charge of YOUR life.
—Jane Hedrick, Jenks, OK

Often people become caregivers suddenly, without warning. Your husband was diagnosed with cancer and requires extensive chemotherapy. Your teenage son had a car accident and is brain injured, unable to think clearly and respond appropriately. Your mother had a stroke that left her without use of her right side.

At other times, caregiving creeps up on you. You know dad is forgetting things, and you slowly start taking on some administrative tasks and calling more often, until one day you realize he no longer has the capacity to live safely on his own. Regardless of how you became a caregiver, whether it was a terrible shock or somehow slipped up on you, in the "hubbub" of the day-to-day routine, amidst the reorientation of your schedule, the search for resources, and the fears about the future, you probably never stopped to think about exactly what happened. You probably didn't devise a plan to help you deal with the present situation or look ahead to what the future had in store. If you are like most family caregivers, you just went into autopilot and started to do, and do, and do. Somewhere along the line, however, it is vitally important that you stop, take a breath, and try to gain some control over the situation, rather than letting the situation control you. It is vitally important that you choose to take charge of your life.

If you don't [take charge of your life], you will become bitter and resentful, and your self-esteem will ultimately suffer. You will lose sight of the reason you chose to become a caregiver in the first place, which is because you love that person and want what's best for them.
—Kim Barrett, Port Orange, FL

What does that mean—choose to take charge of your life? Obviously you cannot control everything that happens to you or to your loved one. If you could you would make their illness or disability go away. You would banish caregiving from your life and bask in the heady air of health, wellness, and "normalcy." But even though you don't have that power, you do have the power to make active choices about how you are going to deal with the caregiving circumstances of your life.


Everything negative has a positive side. Keep on looking until you find it.
—Betty S. Katz, Deerfield Beach, FL

A caregiver cannot take charge. The loved one's condition changes. . . . You can merely co-exist, maintain some sense of self, and plan for better days.
—Martha Harnit, Eustis, FL

Perhaps the most important choice you have to make is how you are going to approach life from here on out. You can choose to drink the sour and acidic juice of lemons, or you can try to make lemonade out of them. You can view life as a glass that is half empty or one that is half full, and if you choose the latter view you will inevitably be a happier and healthier person. You will also be a more peaceful and loving caregiver, and more capable of proactive action on behalf of yourself and the person you care about and for.

That's because attitude impacts action. Our inner thoughts propel our outward movement. If you put on the mask of self-pity, then you'll shoot a hole in every idea or suggestion that well-meaning people offer. If you wallow in the waters of negativity, you just may drown. I know. I wallowed for a very long time and I paid the price in multiple ways.

Just fake it! Act as if . . . then it makes it easier to be cheerful. Soon, you will actually feel positive. It's a decision, not a feeling.
—Nancy James, Odessa, TX

I'm not suggesting that you be a Pollyanna. That doesn't make any sense either. Complete denial of your changed situation has as many negative side effects as wearing a hair shirt. What I am suggesting is that you recognize that you do have choices. There may be more difficult choices now that you are a family caregiver and have a loved one dependent on you in ways you never imagined. It is also true that some of life's options that were once open may now be closed to you and your family, but life still offers options and choices, and recognizing that will help you have a life that is rich and good and full, albeit in different ways than it was before. So much depends on our attitude.

Evie, the friend I mentioned before, is the perfect example of a family caregiver who revels in life and always finds its silver lining. She refers to herself as a realistic optimist. She says:

I have always believed that all the information we need and want is out there in the universe. But it doesn't just appear. You have to believe it is there and make the effort to find it. You have to believe that flowers can grow from rocky soil.

I must admit I'm not like Evie. At times I tend to see the negative side of situations first. I can't immediately see the good that comes out of the bad, the rainbow after the downpour. That's why it is so good to have a friend like Evie. She can always help me see things through a brighter lens.

A positive attitude requires constant attention and practice.
—Judy Black, Portland, OR

How do you view your glass, as half empty or half full? Caregiving may bring forth a common grab bag of emotions, but how we deal with them is very individual and reflects our attitude toward life in general.

A year after Cindy and I went on our respite to the beach we were fortunate enough to have the opportunity to go again, but at the last minute she had to cancel, so I went by myself. It wasn't an easy decision to make, but I'm glad I did. I needed to do some thinking and soul searching, and this gave me the opportunity.

It was a rather sad time for Steven and me because he had recently gotten his first wheelchair, the scooter no longer being sufficient for his needs. Although the wheelchair definitely made our day-to-day life easier, it was a symbol of his growing disability. It caused the old emotional wound that started with the diagnosis to reopen, and so once again I had to confront my fears about disability and our future, my sadness and my pain, and Steven had to confront his as well.

While at the beach, sitting on the sand and soaking up the warm rays of the sun, alone with my thoughts and feelings, I wrote a poem that was inspired by, of all things, a beach chair. The poem erupted out of my brain in only a few minutes and poured onto the writing pad that was propped up against my thighs. It was a very dark poem, reflecting all the painful emotions the purchase of the wheelchair engendered. It expressed my fears and my anger. It was the visible representation of the pain that I held inside. It was a poem written by a woman who definitely saw her glass as half empty. The sun was shining. I was enjoying a respite, and I decided to try to think about Steven's need for the wheelchair in a different way. I ripped up the first poem and began again. The poem that came from my inner core the second time around was more upbeat. It looked at the doors that the wheelchair opened for Steven and me, not the ones that it had closed. This is the poem I called "The Chair," but wonder now if I should rename it "Life Depends on Your Point of View."

It sits there at the crest of the beach, on the rise just before the
sand dips towards the water's edge.
A lone beach chair, seemingly abandoned.
It's a jaunty chair with its yellow striped canvas seat and
sailboats floating on its blue and yellow back support.
It lists just a bit to the left, almost rakishly, as it nestles in
the sand, surveying the sea.
It is a chair made just for sitting, and sitting on the sand at that.
It has no legs to get in the way of stretching out, relaxing,
and letting the sun seep into your bones and warm your soul.
It is so unlike another chair I know. A black chair with wheels.
A chair that does not survey the vastness of the ocean with a
jaunty air, but rather a chair that defines a narrower
And yet, I think this other chair is a happier chair than
the one that sits and stares out to sea, for it is a chair with
wheels that take the place of legs no longer able to propel
their owner forth.
This other chair is not made for sitting and looking at the world.
It is a chair built for exploring, for meeting life face to face and
tasting of its spirit.
Perhaps this chair should have a seat of yellow and white stripes,
and a back support adorned with sailboats.
A far better statement of its adventurous and joyous possibilities.

Nothing had changed in the hour between the time I wrote the first poem and the time I wrote the second one, nothing except my attitude. And yet that was everything.

Take Charge Activities and Coping Strategies

It's a fallacy to believe that we are ever in complete control of our lives. So much happens because of situations well beyond our ability to affect them; yet they affect us, sometimes for the good and sometimes for the bad. A big rise in the stock market can mean you'll definitely have enough money to send your kids to college. A tornado can destroy your home beyond repair. Other circumstances we obviously do have some control over. We can choose where to go on a vacation or choose to put ourselves on a low-salt diet to control high blood pressure. A loved one's illness or disability generally falls into the first category, and we struggle to find ways to control its impact on their life, on our own, and on the lives of the rest of the family. We need to find ways to regain some of the sense of control that we've lost. We need to learn how to cope.

A Personal SWOT Analysis

Have you ever heard of a SWOT analysis? It is something that is done in the business world to assess a company or an organization's ability to change or move forward. It is often one of the first steps in strategic planning. SWOT stands for strengths, weaknesses, opportunities, and threats. To get a handle on your life as a family caregiver, to begin to take charge, to find ways to cope with your fears, to determine what choices you have, you might consider conducting your own personal SWOT analysis.

We all have strengths and weaknesses. These are characteristics that are intrinsic to who we are. Some of them may be physical, some intellectual, some an innate part of our personalities. They may change over time, or a perceived strength may be an asset in one situation and a liability in another. Have you ever thought about your strengths and weaknesses in terms of your caregiving situation? If you haven't done it yet, you might consider making two lists. List number one can enumerate what you see as your strengths and what impact each one has, or could have, on your ability to be a successful family caregiver. List number two includes your perceived weaknesses and the consequences they have, or could have, on your caregiving. These lists can help you sort out in which areas you could really use some assistance or advice.

In my case, I'd say one of my strengths is the fact that I tend to be proactive and plan ahead. I can also be persuasive. I can laugh at myself. I usually catch onto things fairly quickly. I don't have a problem asking for help, and I am physically stronger now than I have ever been in my life.

In terms of weaknesses, I am a five-foot, small-boned woman, and although Steven is an average-size man, I just don't have the leverage to help him if he falls or needs other significant physical assistance that requires height. I am lousy with math. My eyes glaze over when it comes to filling out forms, and I can be impatient, especially when dealing with bureaucracy.

Opportunities and threats come from the outside. A retirement community is being built two miles from your house, or your husband's employer will let him work from home two days a week. These are obviously opportunities that, in the right circumstances, could be the answer to your prayers. Threats can range from a potential loss of health insurance to the fact that you live in an old two-story house that would require extensive, and expensive, renovation to make handicap accessible.

Can you think of what opportunities you currently can take advantage of, or what threats you need to find ways to work around or somehow get rid of? A personal SWOT analysis is a place to begin to think about questions such as these, and it is one of the arrows in your quiver of resources to help you build your confidence and take charge of your life. Think of it as a living document, one that will change as you and your circumstances do. It can be a useful tool throughout your caregiving career, not just at the outset.

Being Proactive versus Reactive

Knowing more about yourself and the circumstances that could have an immediate effect on your situation is a start, but taking charge of your life shouldn't end there. Over and beyond gaining an understanding of what you bring to your caregiving situation, there are other actions you can take to boost your confidence and give you more of a sense of ease. It is important to remember that, although you can't control everything that happens, you do have the power to choose your responses and whether you are going to let circumstances take control of you, or you are going to take control of circumstances.

I strongly believe that family caregivers need to become strong advocates for their loved ones and themselves, and that we need to be proactive and resourceful in finding the information and help that we need. Having said that, I also recognize how difficult it is for already over burdened caregivers to find the energy and wherewithal to battle unresponsive healthcare and social-services systems, and unfortunately, sometimes other family members as well, and to meet their loved one's needs, especially if being a fighter doesn't come naturally.

I also know that many of you will do just that. You will find an inner strength you didn't know you had and you will make an effort—indeed, are making an effort every day—to resolve yet another problem with the insurance company, put the pieces in place that will allow you to get away for a day of respite, track down the cardiologist and get him to coordinate with your loved one's primary care doctor. It's hard to be an advocate for yourself and your loved one, but if you or someone you delegate to are not, then life will be that much more difficult because caregiving doesn't come easily, and the services and supports we need unfortunately aren't part of a seamless whole.

Being an advocate means recognizing that you and your loved ones are consumers and, as consumers of our healthcare system, are owed quality care, respect, and responsiveness.

Being an advocate means recognizing that the squeaky wheel is often the only one that gets attention in a too-busy system.

Being an advocate means fighting for what you believe is right—whether that is an extra day in the hospital or a timely report on a new set of tests. It's getting your boss to understand that now you need some time off, but that you have a plan in place for meeting your responsibilities to the company, and being an advocate is also about getting at least one other family member to recognize that now and then you are going to need a break and they are going to have to chip in with hands-on care.

The dictionary defines advocate as both a noun and a verb. As a verb it means, "pleading on behalf of something or someone." A suggested synonym is the word support. That being the case, you may have long been an advocate without even realizing it.

Parents know that it is important "to pick your battles" so that you aren't arguing with your kids all of the time, and so that when you put your foot down they know that you mean it. Another way of expressing the same thing is to say, "Don't sweat the small stuff." All of this is good advice for family caregivers who have to conserve their energy and decide what's worth making a fuss over and fighting for. But just recognizing what is important enough to expend your energy on is a big step and a positive advocacy approach.

How are you going to be proactive? How are you going to be an advocate for your loved one and yourself? There are many possible ways. For instance, are you going to educate yourself about your loved one's condition and your rights as a healthcare consumer so you can play a real role as a member of the healthcare team, or are you going to accept the information provided to you as gospel without asking questions or trying to insert yourself into the healthcare process?

Are you going to be proactive and do some planning, such as obtaining a medical power of attorney so there will be no question of your authority to speak for your loved one if he can't speak for himself? Are you going to learn skills that will make caregiving a safer process for you and your loved one? There are a variety of ways you can build your confidence and capabilities, but you first need to choose to take charge of your life. Research, planning, and skill development are just three of the ways to develop your confidence and capabilities. Don't assume you have to do all of these simultaneously or all by yourself. Part of the process of taking charge is prioritizing and coming up with a game plan. Your SWOT analysis can play a role.

Research Takes Many Forms
Not knowing is being lost.

—Rhonda Huffman, Toledo, OH

For many people anticipating becoming family caregivers or those newly thrown into it, one of the first things they want to do is learn about their loved one's condition. Having a base of knowledge about his diagnosis can put you in a better position to ask the doctor meaningful questions about treatments, side effects, and prognosis, and also help you better evaluate recommendations given. Do you know some of the common terminology associated with your loved one's condition? What research could you do to increase your knowledge base and, with it, your confidence?

One place to go for information is a voluntary health agency (VHA); that is the general term for organizations like the American Heart Association, Easter Seals, and the Brain Injury Association. VHAs focus primarily on finding a cure or treatments for the particular illness or condition they represent, but depending on their size and their mission many provide all sorts of services to help patients cope with their diagnosis and its impact. In the past few years, some VHAs have begun to recognize that their sphere of concern needs to include family caregivers as well as patients, and consequently your research may turn up information and programs specifically designed to help you cope with, and become more capable at, the job of family caregiver. In the resource section there is a list of many VHAs, their Web sites, and their tollfree phone numbers.

The Internet is the place of choice to do research these days. You can read articles written for the professional community, chat with others in similar circumstances, post questions for a doctor, create a medical journal for your loved one, stay up on the latest legislative activities that impact services for those with physical and mental disabilities, and have a conference with other members of your family. The list of what you can find out and what you can do on the Internet is seemingly endless. Information is empowering and, generally speaking, the more you have the better off you are. I'm definitely not an Internet whiz kid. Nevertheless when I want and need to know something about MS, I get online and search away. I now know the addresses of some specific MS sites, but at the beginning I just went to a search engine and typed in MS. A list of sites to look at popped up. If you are just getting started, that's what I would suggest you do. Don't have access to the Internet? I bet someone you know does and they'd be happy to help out in this way.

The internet has been my lifeline to the information I need.
—Janet L. Kieffer, Mingo Junction, OH

Some years back, when Steven started having difficulty urinating and a visit to the doctor suggested this was probably a long-term problem, I immediately turned to the Internet to learn more about his condition. We were very aware that incontinence is a big problem for many people with MS, but we'd never heard of anyone who suffered from urine retention.

It never entered our heads that MS could cause someone to be unable to pee. After a couple of hours in front of the computer, I surely wasn't an expert on the issue, but I knew enough to talk intelligently to the urologist and to ask reasonable questions. I even happened on a research article he wasn't aware of. Talk about a sense of confidence, let me tell you. When I faxed that article to him I felt so much more capable as an advocate and a family caregiver. And it was amazing how differently the doctor began to treat me. I wasn't just Steven's wife anymore; I was an important player in the discussion and decision-making process who was to be taken quite seriously.

Learning as much as you can about your loved one's condition is a critical activity that isn't only important at the beginning of your caregiving journey but one that continues throughout it.

Research is a mixed bag. Obviously I read everything I can get my hands on . . . and sometimes I feel more in control. Other times, it just highlights what might be in the future and I don't always want to think about it.
—Anita Bluestone, Teaneck, NJ

Research has been a big help in helping us to understand the tests that are being done and what to expect next. It helps us to make more informed decisions and feel that we still have some control over our lives and decisions.
—Linda C. Jackson, Norman, OK

Rules of the Game

There's another kind of research that is equally important to do if you want to feel more in command of your caregiving life. It's finding out the rules of the game. What I mean by that is the world of healthcare is complex. It has its own systems of operation designed to help the medical personnel involved do their jobs, prevent injury, and maintain proper records.

These systems are not designed to accommodate families. For instance, it is important to understand that a doctor's legal responsibility is to the patient, not to you the family caregiver, unless of course you hold medical power of attorney. If you and your loved one want you to be part of the decision-making process, want you to be present during examinations and tests, then it is your loved one who must communicate that to the doctor, assuming she is mentally and physically able.

Just as the medical profession as a whole has its rules, so do physicians' offices. And just as with other businesses, rules differ from one to another. A good way to find out how a doctor's office works is to get to know the office staff. Learn people's names. It goes a long way toward creating a relationship as opposed to just an exchange of information. The office manager or nurse can tell you the best time of day to reach the doctor by phone, what days and hours the office tends to be busiest, what procedures must be followed if you need a prescription refill, and even the lead time involved if you want to make an appointment for a routine exam. If you know how the office is run, you are much more likely to avoid frustrating situations.

The same is true in emergency rooms and when someone is admitted to the hospital. There are procedures, and in some cases actual rules, that must be followed there too. For instance in the ER, especially if it really is a dire emergency, your job is to provide necessary information quickly and then get out of the way. In the hospital, one thing I have found is that providing a typed list or computer form of Steven's critical information is immensely helpful for the medical personnel I have to interact with. It's helpful for me too. I try to update it periodically and always take a copy of it and Steven's living will and power of healthcare attorney with us on any hospital visit. You may have heard the term personal electronic health record (PEHR) or personal health record (PHR). These are records that are "owned" by the patient. You and your loved one are the only people who connect across all healthcare settings: doctors' offices, hospital, rehab, home. Therefore you are the only ones who can provide a complete record of your loved one's history and status. The field is still in its infancy and at this point I find it easier to use a typed form that includes core information about Steven's condition and his functional abilities. You can read more about personal health records in the article in the appendix.

Name and Address: Steven Mintz
Home Phone: XXX-XXX-XXXX
Insurance: Company and Policy Number
Medical Issues: Mr. Mintz has Multiple Sclerosis.
He requires urinary catheterization. He has no other medical conditions,
but there is a history of diabetes
in his family.
He has no known allergies or adverse
reactions to medications.
Both his father and mother are deceased.
(Dad heart, mom cancer.)
Blood Type: O Positive
Care Issues: Mr. Mintz is in a wheelchair. He requires help with all activities of
daily living.

Medical Information Form for Steven Mintz

Care Issues (con't.): He cannot transfer on his own. To get him onto a
hospital bed or
gurney, two people are needed,
one to pick him up under his arms
and the other to lift him beneath the knees.
Mr. Mintz's fine-motor skills are
greatly impaired. It is best to assume
that he cannot manipulate
anything on his own, except perhaps
the emergency buzzer.
Our experience is that after a hospital
stay, Mr. Mintz is temporarily
more disabled than he was at admission.
Home-care assistance is
definitely needed to help him with ADLs.
Doctors Names and Phone Numbers:
On-going Medication: Name, amount, dosage, special instructions
(e.g. Lipitor, 10 mg, once a day, in the evening)
Call in an Emergency: Suzanne Mintz
Relationship: Wife
Phone numbers: Work, Home, Cell
Documents: Mr. Mintz has a Living Will.
Mr. Mintz has a Medical Power
of Attorney designating Mrs.
Mintz as his surrogate when necessary.

Note the detail under "Care Issues." You'd be surprised how little doctors, and even nurses understand about the limits of people with disabilities, which are compounded when they are ill.

Being prepared to work within the system, or being aware of what you will face if you try to buck it, is important information to have so that you are on a level playing field with the professionals with whom you need to interact. There's nothing more unnerving or confidence deflating than to believe you are the only actor in a drama who hasn't seen the script, and if you think about it, that is exactly your situation in healthcare settings. Everyone you will meet has been trained and, in most cases, licensed or certified to do their job. They are familiar with the procedures and rules. You and your care recipient are the only ones working in the dark. That being the case, the more questions you can ask, the more organized you can be, and the more you act like a healthcare advocate, the more confidence and control you will have over your caregiving circumstance. Information on planning a doctor's office visit and other practical tips on interacting with the healthcare system can be found in the appendix.

Peer Knowledge

By doing research, I also have found other people willing to share their specific experiences, and I know that I am not alone. I have found that I am also able to help other people by sharing the knowledge that I have acquired.
—Judy Horner, Boardman, OH

Some of the best research you can do involves talking to other family caregivers. Learning from those who are somewhat farther along in their journey than you and your loved one, or have actually completed it, can save you countless hours of effort and provide you with very concrete and practical advice.

There are many products and services available to help caregiving families but most of us don't know what they all are or where to find them, and there's no one place to go that has all the answers. Developing friendships with other family caregivers, caregiving families, or people with disabilities can enhance your ability to find what you need.

My friend Joan isn't a family caregiver. She is a person with a disability and she lives on her own. Joan has a very bad case of rheumatoid arthritis. She has had to revamp her entire life because of her illness and therefore she has searched out and found many products to help make her life easier. Although her illness is very different than Steven's, they have some of the same problems. Joan has a hard time picking up a glass because her fingers are so curled and inflexible.

Steven has a hard time picking up a glass because his hands are weak, his fingers are no longer nimble and he has little sensation in them. Joan told us about these extra long straws that she uses. They can be easily cut to whatever length necessary to meet your particular needs. She gave Steven one to try and told us how to get them if we were interested. We find them so helpful that we even keep some in the backpack that we take with us whenever we go out. These straws provide a very simple solution to what is actually a rather big problem, but we never would have known they existed if it wasn't for Joan. Sure, we may have come upon them if we went on a search for a product to help Steven drink from a glass more easily, but we hadn't yet begun to do that, and how much nicer to have a product be recommended by a friend who already knows that it works.

If the shoe were on the other foot, if we knew about the straws and thought they might be beneficial to Joan, we would have told her about them. When we find a superior product or service, Steven and I jump at the chance to share our finding with others. It's part of the unspoken bond that those of us outside the norm make to help each other maintain as much normalcy and independence as possible. So don't hesitate for a second to ask other caregivers or someone you might know who has a disability if they know a physical therapist they swear by, or if they know of a product that makes it easier for a person with limited mobility to get in and out of a car. It might just save you a lot of time, and effort, and anguish.

Doing research, all kinds of research, is definitely one of the ways you can begin to gain some control over your caregiving situation and improve your own sense of confidence and competency in the bargain. If research isn't your forte, if it seems beyond you regardless of the medium being used, or if you just don't have the time, is there someone else in your family, or is there a friend or colleague, or a member of your congregation who can do it for you? Don't think you have to do everything yourself. Learning to be a manager, to delegate tasks, can help you feel more in control. Thinking of alternatives when roadblocks are put up in front of you is yet another way to begin to take charge of your life. It is a proactive approach to problem solving.


If you have a plan, you can enjoy what you have at the moment without as many distracting fears about the future.
—Victoria Kellerman, Parkville, MD

Since becoming a family caregiver, have you done any financial or legal planning, or even sought advice about these issues? Have you evaluated your finances to see if there is any way you can afford to pay for even a little bit of help? Have you tried to find out if your family is eligible for free or lowcost services through local, state, or national programs? Does your loved one have a will and a living will? Do you? Do you know what Medicare does and does not cover, or, if your care recipient is under sixty-five, what your private insurance will pay for? Are you aware of what might happen as your sister's condition deteriorates, and have you at least thought about what that might mean in terms of her ability to continue living on her own? Have you considered the possibility that you could have an accident or get sick? I know we never think anything is going to happen to us, but what if it did? I wear a family caregiver medical ID that tells emergency personnel that I care for my husband Steven and he will need help. It has given me such a sense of peace and also empowerment I never would have believed possible. Information on medical IDs for family caregivers can be found on the last page of this book. It is amazing how many questions arise when you begin to think "what if."

I am positioning myself professionally to be able to work from home and earn the same, if not more income, if it should become necessary.
—T. Mikki Crawford, Silver Spring, MD

If anything should happen to me, what happens to my husband?
—Sonia J. F. East, Copper Hill, VA

I had dinner with a colleague from out of town who was moving to the DC area. Chuck confided to me that his wife had a degenerative brain disorder that was currently affecting her mobility and fine motor skills, so it was important to him to find a house that was either all on one level, or at a minimum had the master bedroom and bathroom on the entry floor. He wasn't sure if his wife would ever lose her ability to climb stairs, but he thought it foolhardy to look for a home that wouldn't be able to easily accommodate his wife's longterm needs. Chuck was being realistic about the future that he and his wife could possibly face, and he was taking that potential future into account when making a long-term housing investment. He was planning, not that she would definitely be unable to walk, but for "what if."

As Chuck told me this, it brought back memories of when Steven and I went looking for our current home. It was in 1987 and although Steven definitely had mobility problems he was still able to negotiate stairs. Despite that, we did exactly what Chuck and his wife did. We thought it a realistic possibility that Steven wouldn't be able to climb stairs at some point in the future and so we only looked at one-story homes. In fact, we went on our search with a very specific accessibility checklist in hand. It included a shower stall in the master bedroom, easy access to the backyard and a garage that had, or could have, an automatic garage-door opener. The house we bought didn't meet all the criteria on our checklist, but it met most of them. Over the years we made some changes to accommodate Steven's growing disability, and although some of them required a bit of ingenuity they were all doable, because of the basic properties of the house we bought. By 2003, however we were looking at a major renovation if we wanted to stay in the house. Our typical five-by-eight bathrooms were just too small to accommodate the realities of power wheelchairs and decreased dexterity.

None of us can plan for all of life's possibilities, but we can definitely plan for some of them. I know from experience how emotionally difficult it is to look ahead toward what your caregiving might entail in the future. Nevertheless, it is very prudent to do some forecasting because if you don't, your life may well be filled with many more crises than it needs to be. Being part of a caregiving family is hard enough as it is. There's no point in making it harder than it has to be. Planning for the future can help put you in the driver's seat of life and also help ward off situations that make you feel dependent.

At each step we have tried to anticipate the next problem dad would be facing. . . . In talking with dad's doctor about what to expect, we were plugged into hospice early. . . . This forward thinking has helped us not have to scramble and has helped us be mentally prepared as changes occurred.
—Lois Finnan, Newburgh, IN

It's been said that Americans are the only people on the face of the earth who think death is negotiable. I don't know if that's true, but I do know that we have a very hard time talking about death and therefore planning for it. That's the one thing we can, and should, all do, even if caregiving wasn't part of our lives.

Some years ago I had the wonderful opportunity to play a leading role in an extraordinary public education campaign to change the way Americans think about, and deal with, end-of-life issues. The program, Last Acts, was a multimillion-dollar effort funded by the Robert Wood Johnson Foundation, one of our nation's leading philanthropic organizations focused on healthcare issues.

Last Acts created a quiet revolution that changed the way physicians manage pain. It raised the public's awareness of end-of-life issues by working with Hollywood producers to include end-of-life scenarios in major TV shows, such as ER. And it taught us that death is a natural part of life that we can and should plan for, and that although it is not pleasant, a family can experience it in a calm and loving way. You may think this is morbid, but in fact it is one of the most life-affirming things you can do. What a great gift to allow someone you love to end their life on their own terms.

We only need to think of the Terri Schiavo case to recall what can happen when your wishes are not known and documented.

Caregiving Skills

I have learned to insert/remove the catheter to remove blood clots and relieve my father's pain quickly. I no longer have to call the doctor or take him to the hospital for this.
—Jane Hedrick, Jenks, OH

In addition to research and planning, there are other things you can do to feel more secure and capable in your actions and therefore more in charge of your life. You can learn some specific skills that help you be a more capable and confident family caregiver. For instance, you can learn how to communicate more effectively with healthcare professionals, over and beyond knowing the terminology associated with your loved one's diagnosis. You may want to learn a few nursing techniques and skills that make tasks easier for you and your loved one or some of the basic skills that physical therapists, special needs teachers, and other professionals go to school to learn and get licensed to do. When we realize everything we need to learn to be comfortable and confident in our caregiving roles, it's no wonder that we so often feel out of our bailiwick. Half of the caregivers in an NFCA survey of family caregivers said they hadn't been properly trained to do the caregiving work they were currently doing, so you certainly aren't alone if you are feeling unprepared.

I have become proficient with the laws and rights of the disabled community and make it a point to inform others.
—Cynthia J. Cavallaro, Swampscott, MA

There isn't one magic place to go to learn skills that can help you in your caregiving. Some hospitals do provide training programs, so it is worth checking with the ones in your community. If your loved one is eligible for homecare services, the agency providing those can certainly teach you skills and techniques as well. Make sure you know what your insurance will and will not cover. Some policies allow a set number of visits by an occupational therapist or physical therapist if ordered by a doctor, and these professionals can teach you transfer techniques and other life skills. Don't forget the Voluntary Health Agency focused on your loved one's condition. The Red Cross even has an entire curriculum on family-caregiver skills training.

I went to my local college and became a licensed nursing assistant.
—Janet L. Kieffer, Mingo Junction, OH

Managing Instead of Doing

Research has shown that men approach caregiving differently than women. Whereas women tend to jump in headfirst and do everything themselves, men tend to take more of a managerial approach and delegate or purchase outside services. Regardless of whether you are a man or a woman, you can learn how to manage your caregiving responsibilities as opposed to letting them manage you. A professional geriatric care manager may be able to help you do just that and actually assist you in finding the right solution to meet your loved one's needs and your own as well. Whether your loved one is elderly or not, consider learning some care management skills.

Here are some tips from the professionals.
1. Educate yourself on the nature of the disease or disability you're dealing with. Understanding what is happening to your care recipient will make you better able to judge the kind of resources you'll need.
2. Write down your observations and evaluations of your care recipient's strengths and deficits. This assessment will not only help you come to a realistic view of the situation; it will be a handy baseline reference to chart the progression of symptoms and changes. It's also not a bad idea to write down your own strengths and deficits so you can be realistic about your own need for help and support.
3. Hold a family conference and decide who will handle what chores if more than one family member is involved. Making sure everyone knows his or her responsibilities keeps misunderstandings to a minimum and saves one person from bearing the brunt of all the work. Note family meetings work best when there is a third party there to facilitate them. It could be a care manager, or member of the clergy, a long-standing family counselor, or anyone that can be trusted not to "take sides" and also has the skills to keep the meeting on topic, on schedule, and all parties feeling safe so they can truly say what is on their minds.
4. Keep good records of emergency numbers, daily medications, special diets, back-up people, and other pertinent information relating to the care of your loved one. Update as necessary. This record will be invaluable if something happens to you.
5. Research services in your area, including respite care, adult daycare, nursing facilities, volunteer programs, and churches. Look at them from a dual viewpoint: which ones are there to help your care recipient; which ones exist to help you or both of you.
6. Join a support group or find another caregiver with whom to converse or correspond. In addition to emotional support, you'll be likely to pick up practical tips.
7. Start advance planning for difficult decisions that may lie ahead before you will have to make them. It's much tougher to think decisions through when and if the situation turns desperate. Don't neglect to discuss wills, advance directives, and powers of attorney. These instruments give care recipients the opportunity to make their wishes known, but they can be signed only when a care recipient is competent, so it's best not to delay.
8. Develop your own support system. Be willing to tell others what you need and to accept their help. Other people could easily do some of the research that all of these steps entail.
9. Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily Building Confidence and Capabilities 97 routine can be a stabilizer, especially for people who find change upsetting and confusing.
10. Approach some of your hardest caregiving duties like a professional. Instead of seeing yourself as a spouse or child, step back and try to insulate yourself from the sense of loss such duties remind you of, concentrating instead on the practical aspects of getting the job done as efficiently as possible. Sometimes your best defense is to distance yourself a bit so you can accomplish the difficult tasks without allowing them to take a constant emotional toll. We all have an image of what our role is as a spouse or a daughter.

When caregiving enters a relationship, stress is created because your image of your role doesn't mesh with your caregiving responsibilities. Finding a resolution to these disconnects can ease the situation for everyone involved.

These are just a few of the ways you can begin to take charge of your life now that you are a family caregiver. It's all about incremental steps and small things that make a difference.

But remember, small steps over time can add up to big accomplishments and a significantly different sense of selfesteem and capability. Together these two personal strengths can help you feel more on top of things, especially if you can keep your cup of attitude at least half full.

From A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard by Suzanne Geffen Mintz, Chapter 4 "Building Confidence and Capabilities: Making Choices, Taking Charge." Capital Books, Inc., 2007. Reprinted with permission. All rights reserved. www.capital-books.com.

Posted on BrainLine December 1, 2008.