My name is Larry Hill and I am an ovarian cancer survivor.

Now, you are probably wondering at this point if I had a sex change or if I'm just confused. I can assure you, I have always had a Y chromosome, testicles, and no ovaries or uterus. I am, however, truly, an ovarian cancer survivor. I know most caregivers are women-but I hope this story helps all those who care for loved ones.

My wife was diagnosed with ovarian cancer in October of 2002. She fought a courageous battle against the disease for 6 years. She went home to God on October 20th, 2008.

I probably learned more about life, death, love, and my place in the larger plan during those 6 years, than in my whole life before her diagnosis. I can tell you from firsthand experience that caregiving is very stressful, demanding work. In addition to providing the care and support his loved one needs, the caregiver must still manage the demands of his own life and the additional responsibilities necessitated by his loved one's reduced functionality. You cannot be a caregiver without love and compassion. In addition, a strong faith and a belief in the purpose of life can be great aids to successful caregiving.

Donna was a home healthcare nurse. I met her while she was in nursing school. As so often happens when one partner is a "specialist," the other depends fully on that person for anything related to that subject. I guess you could say my medical knowledge atrophied over the years. She handled anything health related. So when we heard the diagnosis of cancer, I gave myself a crash course in caregiving for cancer patients. I had a lot to learn.

I believe there are stages to caregiving just as there are to cancer. Not everyone goes through all the stages and the duration of each stage can vary greatly from case to case.

The first stage begins when the shock of the diagnosis is replaced by the reality of the situation. This is the "I Can't" stage. At first, it seems obvious that we should be ignorant about caregiving. After all, few of us have ever done it. We have had no experience at it, right? Nothing could be further from the truth.

While it is true that most caregivers have never provided medical care to a terminally ill loved one, they have certainly cared for them. Often the phrase "care for" is used interchangeably with the word "love." I'm sure you have heard the phrase, "They really care for each other." In a sense, when you love someone, whether a spouse, child, parent, or anyone else, you are a caregiver. There is no one more qualified than you to care for your loved one. No one knows more about taking care of that person than you do. You have been doing it. You just didn't realize you were doing it. Sure, the level of care you will be providing has changed, but the all-important foundation that love provides has already been well established.

Figure. No caption available.

In my own experience, Donna and I were 20 and 21, respectively, when we were married. At the time of her diagnosis, we had been married 34 years. Who better to care for her than I? We had been caring for each other for over 35 years. Once I realized this, I knew I could, and I would, be her caregiver.

I found the second stage to be the most difficult because it can vary so much from day to day. It often varies hour to hour or even minute to minute. I call this the "Pendulum" stage.

This stage usually starts off with a long hug, tears, and a promise. Many times the first part of that promise is that the caregiver will do everything in his power to care for the person he loves. The second part of the promise can vary depending on the prognosis. Most often it takes the form of a pledge to help the patient beat the disease or to make her as comfortable as possible while awaiting the inevitable.

It is only natural that most caregivers believe the one they are caring for will always be grateful for all they do. That starts the pendulum in motion. It rarely occurs to the caregiver that it is unrealistic to think that a person, who has had the bombshell of impending death dropped on them, will be able to steer a smooth and consistent course throughout the illness with all its associated pain and discomfort.

In this stage, the caregiver often appears to be condescending. Sometimes he actually does too much for his loved one. When that happens, the response is usually something like, "Leave me alone!! I am not an invalid," or "Don't baby me. I can still do things for myself. I'm not dead yet."

Now the pendulum begins to swing in the opposite direction. The caregiver quite often feels hurt. After all, "I was only trying to help and that's the thanks I get." Many times he not only stops doing whatever it was that made the patient angry, but often stops doing other things for fear of offending the patient.

I think you can see where this is leading. With each swing of the pendulum, the arc gets wider and can lead to some real issues. In extreme cases, it can result in the separation of the caregiver and the care recipient. The only way to really slow the pendulum is for each of them to walk in the other's shoes.

It is true that neither one can know what it's like for the other. They can only try to understand what it must be like. The caregiver must try to imagine what it's like to know you have only a short, undetermined amount of time left on this Earth. In many instances, he must envision what it's like to be in constant pain or in a drug-induced fog.

Likewise, the care recipient needs to understand that the caregiver's life has been turned upside down, too. That person not only has just been handed additional responsibilities but also must now watch the person he loves suffer and die. In its own way, this can be as hard as being the one who is sick. At times, it can be even harder. It was very difficult for me to watch the cancer destroy my wife. To watch a vibrant, healthy woman who loved life, waste away was very, very difficult, to say the least.

Mutual understanding and respect resulting from a shared love is the only way to slow the pendulum down. In my own experience, when I felt it was starting to swing again, I would say a silent prayer for patience and understanding. It's tough to be angry with someone else while you are praying.

Perhaps another way to manage this phase of caregiving is to accept the fact that each person in this relationship is both a caregiver and a care recipient. People like to put labels on everything. The sick person has many labels; the care recipient, the patient, and the survivor, while the one providing the care is usually labeled the caregiver. It is as if these terms are opposites; if you are one, you can't, by definition, be the other. I submit to you that the caregiver needs as much care as his loved one and, therefore, is also a recipient. He is not one or the other. He is both.

Likewise, those who are ill should never underestimate the restorative power of the care they can provide to their caregivers. Something as simple as a "thank you" or a smile can be incredibly enabling when the burden of caregiving begins to take its toll.

Here is something to think about. Taking care of someone and giving care to someone mean the same thing.

There are a few things that can help both people cope with this stage.

* Share information about the disease and the treatments.

* Try to live a "normal" life. Enjoy things, people, and places together. Travel as long as you are able.

* Be mutually supportive. Smile. Say "thanks." Let the other person know when they do something that pleases you.

* Work on things such as household chores, projects, and hobbies together whenever possible.

* Try to imagine what it must be like for the other person. Then act accordingly.

As we move to stage three of caregiving, the pendulum slows and finally stops. This is the stage of "Total Commitment." Most of the time this will happen later in the illness, after many swings of the pendulum. The caregiver begins searching for answers within himself. Almost always, he realizes that there are only two possible solutions. He can walk away from his caregiving role and the patient, or he can resolve to stay for the duration. He commits to do whatever it takes to give his loved one the best possible care until God calls that person home.

In my mind, resolving to stick it out, no matter what occurs, is very much like a religious vow. There can be no turning back. The caregiver thinks it through, prays on it, and makes a promise to himself, and to God, that he will be there for as long as it takes, no matter how hard it gets. He promises to try his best for his loved one, and if he's told that it is not good enough, he will swallow hard but he will continue to love and care for that person.

I am not suggesting that the caregiver puts on a hockey mask and pretends he is wearing a suit of armor, that nothing can hurt him. Instead, he accepts the fact that the person he is caring for is very different from the one he once knew. When he understands that his loved one's words are being passed through the meat grinder of the cancer on the way to his ears, it becomes easier for him to arrive at this stage of acceptance.

The incredible peace I felt when I arrived at this decision is difficult to describe. It is as if all things came into focus. The path ahead became very clear. I had been seeing things through a foggy glass and suddenly the glass was wiped clean. I now knew what I had to do and I accepted it without reservation. The decision was then behind me and I felt a renewed energy. As strange as it sounds, I didn't know exactly where I was going, but I knew how I would get there.

Perhaps the most amazing thing about reaching this stage is that, even though the caregiver alone has made this commitment, both people are changed by it. The caregiver will begin to notice that a new calm gradually comes over the patient because the caregiver himself has become much calmer. Things begin to happen more smoothly. It is as if the relationship between the caregiver and the care recipient attains a new level of love and understanding. They await the inevitable together, knowing that they have passed through the worst-together. "Death, where is thy sting?"

There is an often overlooked fourth and final stage to caregiving. It occurs after the patient's death. It is usually called grieving or mourning. It cannot be generalized because each person mourns differently but some similarities exist in all grieving.

After months or even years of caring for someone else, it is time for the caregiver to take care of himself. This is a very difficult time for the caregiver. His focus has been on his loved one. His life has revolved around that person's needs. Now, in an instant, there is a hole in his life where that person used to be. His life has once again taken a radical turn, just as it did when he first heard the diagnosis.

It is important that the caregiver fill this void as soon as possible with his own care and recovery. There is still a long road ahead for the caregiver. Although his loved one has gone on to an eternal reward, he is still here on Earth with a life to rebuild.

As professionals, you can be an integral part of this rebuilding process. The patient you originally cared for is no longer in need of your skills, but your job is not quite finished. You can help the caregiver by providing encouragement, consolation, and directing him to those resources designed to ease the pain of his loss. One more visit or one more phone call from you can make a big difference. The caregiver will never get over the loss of his loved one, but you can help him get through it.

Now that we have outlined the caregiving process, let's look at the needs of the caregiver. No one can argue with the fact that caregiving takes a bit of time and a whole lot of love. It is a role that presents the caregiver with a significant change in lifestyle. Regardless of the love that he has for the patient, caregiving will require a quantum leap in that love. No matter how many household activities he has been responsible for in the past, his job list will certainly expand. Add to that the new role of caregiver, and it is easy to see why his life will change dramatically.

I have categorized the needs of the caregiver, based on who will fulfill them. First, there are those needs that are filled by what I'll call, "outsiders." By outsiders, I mean people other than those who are actually living with the caregiver. It could be someone as close as a parent or child or as distant as a casual acquaintance. These are the people that reinforce your belief in the basic goodness with which God has endowed the human race. They seem to come out of nowhere at the exact moment you need them.

They fulfill the caregiver's everyday needs; the occasional meal when the caregiver is just too tired to cook, the errands that the caregiver needs to have run, a few hours respite from caregiving to recharge the batteries, a "How are YOU doing?" or, "Is there anything we can do for YOU?," when he feels invisible in the world of his patient's disease. In short, these people provide the support that the caregiver needs to continue in a very demanding role. The fulfillment of these basic everyday needs is the buttress that keeps the dam from bursting and overwhelming the caregiver. They keep him from drowning in the sea of the constant demands of caregiving as he faces each new day. Without this support, giving care is extremely hard indeed.

The knowledge that he is not in this alone can be a huge energy boost. The key to the fulfillment of these needs is the realization that, no matter how strong he is, the caregiver cannot go it alone. He cannot do everything himself. It can be very hard for him to admit this, but once he accepts this fact, it is much easier to accept help from those who love enough to offer it. It is important for him to realize that people who help others gain a great deal of satisfaction themselves. They feel good when they help. The eventual end point is to be able to ask for help. It took me almost the full 6 years of my wife's illness to arrive at that point.

Donna was a very strong willed person. She had a very high pain tolerance and showed incredible courage during her illness. She had even tried to return to work with a fractured pelvis 4 months before her death. Consequently, we had no professional caregiver until 1 week before her death, and then only because I insisted on it. I'd like to think it was because I was doing such a good job, but I know how scared I was of making a mistake and causing her more pain. It was a relief to have a knowledgeable medical person to guide me even if it was only for 7 days. Finally, I learned to ask for help.

Any book or pamphlet you read about caregiving mentions the importance of taking care of oneself. They stress the importance of exercise and eating right. They talk about taking time for yourself and taking a break from caregiving. While these things are certainly very important, learning to treat his mental-self right is the most important need a caregiver can fulfill for himself. A positive mental attitude is essential to a caregiver's survival.

Talking to oneself is often frowned upon and laughed at in our society, but it can be an enormous aid by creating a brighter outlook for the caregiver. We become what we think about the most. By telling himself that what he is doing is important to his loved one and that he is doing a good job of caregiving, he reinforces what he already knows to be true.

His outlook as he faces the coming days is a positive one. Instead of questioning the value of what he is doing, he sees his caregiving role as a gift from God, rather than a burden thrust upon him. This is what I meant when I wrote about the commitment stage earlier. There is an incredible feeling of lightness when you understand that God's gift to you is your gift to your loved one as she prepares to meet Him. A heavy weight seems to have magically been lifted from your shoulders.

Just as important as positive self-talk is talking to God. This was a tremendous help to me during Donna's illness. There are certain caregiver needs that only God can fulfill. The caregiver needs to understand that God is there to help him through this very difficult time. It is okay to ask "Why?" It is okay to be angry. Most importantly, it is okay to ask a higher power for help and understanding. Spirituality is an important part of our lives. God knows we are human and we need His help. Caregiving is a "team sport," and those who believe in a loving God have an extra player on their team, a real superstar!!

At first thought, the last person we would think of to fulfill the caregiver's needs is the patient. After all, isn't this the person who created all the needs in the first place by getting sick? Earlier, I said that the line between the roles of caregiver and care recipient was not distinct, but blurred. I said that it was also very important for the patient to care for the caregiver. I mean no disrespect toward the Almighty when I tell you that I believe that the patient is as instrumental in fulfilling the needs of the caregiver as God is. In fact, I believe that God often speaks to the caregiver through the words and actions of the patient. I make that statement from my own experience. I can tell you with unwavering certainty that there is no greater need for the caregiver than to know he is doing the right things for his loved one and that the patient appreciates what he is doing. There is nothing that can bring greater joy and happiness to the caregiver than a smile on the patient's face and the words, "Thank you."

It never ceased to amaze me how good I felt when Donna smiled through her pain and said, "Thanks." At that moment, I had no more needs. I had everything I needed. I knew I was doing okay. I knew I was a good caregiver. I needed no more proof. The only person that mattered had given me a gold star.

There is one final, but very important need the caregiver has-the need for prayers. To those of us with faith, prayer is the natural response when we, ourselves, have needs, or we encounter another person with needs. I always felt a little bit better when I talked to someone who told me he was praying for my wife and me.

It doesn't cost a penny, yet a simple prayer is one of the greatest gifts one human being can give another. To ask the Creator to help someone else is an unselfish act that must bring a big smile to the face of God.

Although many of you will initially be called on to help care for someone who is terminally ill, you will also be in the position to care for the caregiver. The caregiver's needs are as real as the patient's. Be mindful of those needs. You can be a great help if you:

* Talk to him but, more importantly, listen to him.

* Smile with him but, more importantly, laugh with him.

* Be afraid with him but, more importantly, give him courage.

* Finally, don't just pray for him, pray with him. "Wherever two or more are gathered in my name, there am I in their midst."

I am not a medical person or a psychologist. I have spent most of my professional life marketing software. These are my insights gained over a period of 6 years while caring for my wife. Hopefully, they will provide you with a view, however limited, from the perspective of the person caring for someone he loves.