Caring Caregivers Guide To Dealing With Guilt

THE OVERVIEW

My husband, Bob, and I took care of the terminally ill, people with dementia such as Alzheimer’s patients and the general elderly public, in our own home from 1989–2006. We counseled many family members over that period of time and realized that almost all of them suffered with some type of guilt. After identifying 9 types of undeserved guilt, we wrote “The Caring Caregivers Guide to Dealing with Guilt” in an effort to help tormented, but loving, families lead a more productive life.

This guidebook is a collection of 10, true, short stories about the undeserved guilt families experience when they turn the care of their loved ones over to someone else. “Caring Caregivers” is written in a down–to–earth style that families will easily identify with but still professional enough for medical management to purchase as a handbook for their employees and libraries. It also contains the stages the family goes through in dealing with the guilt, a question and answer section, a much needed checklist for placement and how to overcome specific problems with creative solutions.

If you have an elderly loved one and are feeling guilty about not caring for them yourself but simply cannot, this book will help you to see you are not alone in dealing with these debilitating emotions and what to do about ridding yourself of the guilt monster once and for all.

If you are not at the point of relinquishing their care yet, “Caring Caregivers” will give you creative tips on caring for your loved one and make your job at home much easier.

This book will also help medical professionals to better understand the anguish and pain their clients’ families are experiencing so they can better serve them.

Coping with death, guilt, mental illness, violence, abuse, revenge, victory, tears and love are but a few of the tumultuous feelings and seemingly insurmountable situations in which the real–life people in the “Caring Caregivers Guide to Dealing with Guilt” find themselves in.

“Baby boomers”, “the sandwich generation” — you can label this group in a variety of ways, but the facts speak for themselves in regard to the increasing population of adult children of the elderly.

If we take into consideration the fact that people are living longer (according to the Census Bureau, the average age at death in the year 2000 was 85), we can see that there are millions of Americans, between the ages of 38 and 67 who out of necessity, make decisions about arranging care for their elderly parents or grandparents. Many of these caregivers have children of their own and the responsibilities of caring for them, both in the home and on the job; they want to help their parents, but they are simply overwhelmed. All too often, they suffer from a tremendous burden of guilt that keeps them from making important and sound decisions about their parents’ care until it is too late and their own health, and their careers or marriages, are sacrificed in the meantime. “Caring Caregivers” helps them make important decisions much easier.

In addition to the compelling stories, a highly beneficial suggestion box with solutions for the reader regarding the type of guilt addressed at the end of each story is included.

Family caregivers, as well as medical professionals who deal with families every day, will find the chapters on the stages that the family goes through, and how to handle dementia–specific problems, highly beneficial and easily applicable.

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THE FOREWORD

by DR. HARRY CROFT

I have treated a countless number of elderly people and their families over the years: families who suffered from guilt when they were forced, by a variety of circumstances, to find an alternate facility for the care of their elderly parents. In many cases, guilt had paralyzed them to the point that they were unable to function normally and it had begun to affect their work, their marriages, and eventually, their own health—both physical and mental.

Until this marvelous book came along, I have not had a resource I could comfortably refer these families to, a book that I believed would truly help them to find solutions that are specifically aimed at this extremely common, but rarely addressed, dilemma of guilt.

Many physicians, myself included, find it frustrating when they see the pain and guilt families go through: because of the limited time available to us, we are forced to concentrate and focus our efforts on helping the patients. The family, more often than not, has no opportunity for resolution of their problems, because they are there to work with the physician on behalf of the elderly parent. They don’t even consider their own mixed emotions, grief, and guilt, until they have left the office and have to deal with it once again. They view their problems as having little significance in comparison with the monumental issues their loved ones are dealing with. They don’t see that when an elderly parent is failing, the whole family is in crisis. In short, they literally cannot see the forest for the trees.

You will find the “Caring Caregivers Guide to Dealing with Guilt” refreshingly easy to read, and you will both empathize and sympathize with the actual families Starr Calo–oy writes about in these real–life stories.

This book is written from the wealth of hands–on experience Starr has had over the past fourteen years, as she has cared for the elderly in her own home. Because this knowledge is drawn from her own personal experience, rather than from a clinical or academic perspective, it is related in a genuine, down–to–earth style that will educate and enlighten as well as delight the reader. Especially helpful are the practical suggestions at the end of each chapter.

I also found the question and answer section most beneficial in the even–handed and calm way it addresses the embarrassing situations that family caregivers often find themselves dealing with when caring for their demented loved ones. Many times, these issues remain hidden away because of their graphic and embarrassing nature, and the family caregiver, out of guilt, struggles on, trying to resolve them alone. This leads to increased guilt, burnout, and even elderly abuse in many cases.

I believe that everyone who is caring for an elderly parent, or who is contemplating doing so should have their own copy of the “Caring Caregivers Guide to Dealing with Guilt.” This book offers the kind of help they so desperately need in order to heal wounds they may not even realize exist–but which are nevertheless profoundly affecting them.

I also highly recommend this book to other medical professionals who deal with the families of the elderly demented on a daily basis. With the solutions described in her book, Starr Calo–oy provides a marvelous bridge over the gap between medical professional and family caregiver. Medical professionals—doctors, case managers, social workers, nurses and aides–can all greatly benefit from her personal insights into the family caregivers’ dilemmas, and her suggestions for ways to deal with them effectively.

I truly believe that we can provide a higher level of care for the elderly when we are willing to take the extra step of extending our consideration to their family caregivers. By acknowledging the guilt and anguish they are experiencing and offering not only an ear to their problems, but practical solutions as well, we increase our effectiveness in treating the patient. When the caregiver is at peace, the elderly patient will suffer less. And isn’t that, after all, what we are all trying to accomplish, each in our own way and from our own particular area of expertise?

Whether you are reading this book as a member of the medical community, you are yourself a caregiver, or you are looking ahead and trying to plan for the best way to help your aging parents, you are about to enter the arena of a truly unique and original approach to dealing with the insidious, devastating and destructive emotion of guilt. Reading this book may well be the first step toward a healthier approach to a problem that is certainly difficult and painful—but doesn’t have to be impossible or incapacitating. There is help out there, and you can find it. This book will show you how.

Dr. Harry Croft is a highly respected physician in the San Antonio community. His regular television commentary, “The mind is powerful medicine,” is featured on the local evening news, and he has been a psychiatric correspondent on television for more than sixteen years. This has earned him national awards from the National Mental Health Association, the American Psychiatric Association, and The National Association of Physician Broadcasters.

Dr. Croft has twenty–five years of clinical practice in Psychiatry in San Antonio, is board–certified in Psychiatry, Addiction Medication, and Sex Therapy, and has written and published many articles. He is also the published author of the audio book, “Treating Your Depression: Finding Light at the End of the Tunnel.”

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SAMPLE CHAPTER

CHAPTER 3

I Promised Her I’d Never Put Her in a Nursing Home

(Guilt resulting from a broken promise)

Bloody Incident

It must have been about twenty–eight degrees on the cold December morning when Velia, the nurse’s aide, arrived at the elderly couple’s home, and didn’t get an answer at the door. She had come to care for Clara, eighty–eight, and Kevin, ninety–two, who lived in an upstairs apartment above their own house, which they leased out to tenants.

As Velia peered through the window, she could just barely see Kevin, who was lying in a small pool of blood on the floor. She couldn’t tell if he was still alive. She could see that the phone was off the hook and out of his reach. Then she perceived movement. There was Clara, completely naked and walking around the apartment in a daze. Clara paid no attention to Velia’s attempts to get her to come and unlock the door. Velia called the police, and with their help and that of the fire department, the burglar bars on the windows and door were cut, and the elderly couple was taken to the hospital.

Kevin had been lying on the floor for two days: he was dehydrated and in shock. He also had an advanced case of terminal lung cancer and only a short time to live.

The couples’ daughters, Margie and Kim, who lived out of town, were notified, and came immediately, along with their husbands. After numerous doctor appointments, blood work and testing, it was deduced that Clara was in the second stage of Alzheimer’s disease. While they wound their way through a tedious medical web, over the course of a week, the family was referred to our home by three different doctors.

The Clan Cometh

I was working in the garden one Sunday evening when the family called and frantically implored me to see them right away. Normally, I do not do any business on a Sunday, but something in Kim’s voice caused me to make an exception, so I told them to come over, and I prepared to meet with them.

The doorbell rang forty–five minutes later. Kim was an attractive forty–five year–old woman, with ash–blond hair and an even tan. Margie had slightly darker hair and was a little shorter in stature than her sister. She appeared to have been crying.

Margie’s husband, short and stocky, had a close–cropped beard that was gray in all the right places. His hazel eyes sparkled when he smiled. Kim’s husband was very tall, and looked very much in charge, in a comforting way. He seemed very confident that things were going to be just fine.

I could tell immediately by their manner and by the way they spoke, that they were devoted Christians, and that they had all banded together to seek God’s help in finding a new home for their parents. They spoke with great love and concern for their parents; but it was very difficult for the girls to relate the recent events without crying.

They told me how their parents had been found and that their dad was scheduled for release from the hospital the next day. Clara was at the apartment, and a friend was staying with her while the daughters came to see me.

Promises, Promises

Kim’s voice trembled when she said, “Mother and I had a long talk several years ago and she made me promise never to place her in a nursing home, or any other institution for that matter. I told her that if anything ever happened and she couldn’t care for herself, that I would have her move in with me.”

Her husband added, “None of us ever knew that things would be the way they are now. We just didn’t realize this would be so hard. Since we came to town, Clara is up most of the night and Kim hasn’t gotten much sleep. We take turns caring for her, but there just seems to be no end to this. We all love Clara and Kevin very much, but we have jobs, and Clara and Kevin are going to need full–time care. Where we live, there are no homes like yours to care for them and we are not going to put them in a nursing home. This is why the doctor referred us to you.”

Margie added, “All of their friends are here, and so is our brother. They have already lost so much. We can’t see taking them away from San Antonio too.”

Loving and loyal adult children often make rash promises to their parents, never realizing the enormity of what they may be promising. The problem is that when the promise is made, the children are younger and stronger, and they see their parents as healthy and competent. At the time the promise is made, the parent is of sound mind, and is alert. He has consideration for others; he can communicate, feed, toilet, bathe and exercise himself. He runs his own errands and the thought of his not being able to drive someday is not even considered. When they make this kind of promise, his loyal and devoted children simply cannot fathom the tremendous workload they are “signing up” for down the road.

No one ever really believes that they will have dementia, or will become so incapacitated that they will need the type of care that would greatly tax their children’s time, energy and emotions. Humans tend to live in the present, and to indulge in denial when it comes to considering the “worst–case” scenario. When a parent asks never to be placed anywhere other than in a relative’s home, she believes that she is simply going to get old and die. She never imagines that she will be a burden on her children. She assumes that she would be going to live with them as a guest in their home.

And Then Gradually

But then, ever so gradually, things change. The parent begins to forget first little and insignificant things, then more important things. He becomes more and more confused. He has trouble finding the right words to communicate his needs, desires, thoughts and feelings. Finally, when he starts doing things like taking off all of his clothes, or putting foreign objects into the toilet, and the plumber has to be called to the house with some regularity, it begins to dawn on the family that something is really very wrong. Unfortunately, more often than not, it takes a major catastrophe for them to stop denying the necessity of calling someone for help. The stove is left on and there is a fire; or the parent wanders off and the police have to call the family to come pick them up. Or the family finds the house in a shambles, with urine and feces all over the place.

That Sunday night, I talked with Clara and Kevin’s daughters for several hours, and they realized that it really wasn’t feasible for any of them to take care of their parents.

Sometimes, all families really need or want, is “permission” to turn the care of their loved ones over to someone else. They need to feel good, or at least not so bad, about not taking them in themselves. An experienced, empathetic caregiver will help them realize that they simply aren’t physically and emotionally equipped to hold up to the heavy, demanding pace of full–time care giving.

By the time we had made arrangements for both parents to come live with us and the daughters left, we all knew each other pretty well and they were at peace with their decision.

Kevin and Clara moved in with us, and they stayed together in the same room until Kevin died a month later. Clara, who had been “shadowing” him for months, only eating or sleeping when he did, was bereft. Her dementia was advancing rapidly, but fortunately at the time of Kevin’s death she was already settled into her new home, and had bonded with us. This gave her family one less thing to worry about in their time of grief, and further relieved the guilt they had originally expressed.

For the first few weeks after Kevin was gone, our nineteen–year–old daughter, Michelle, and I took turns curling up in the bed with Clara at night, holding her and rocking her. Although she had dementia and didn’t quite understand what had happened to Kevin, she knew that there was a deep emptiness and void in her life; she couldn’t understand exactly what it was, but she knew that something was sorely missing. She would wander all over the house looking for something, she didn’t quite know what. After about three weeks, we were able to leave her bed in the middle of the night, but in the meantime we had bought a soft baby doll for her to snuggle. She loved that doll and cared for it as if it were one of her children. It got her through some rough times: two weeks later, she was finally able to sleep through the night all alone.

Baby Dolls O’ Mine

Three years passed. As her disease progressed, Clara became bed–bound. Remembering how much she had loved nurturing the doll we gave her when Kevin first died, and in an attempt to provide her with an activity that she would take an interest in, I asked her daughters to look for some special baby dolls she could care for in her bed. They sent her three dolls, which we named Sleepy, Grumpy, and Happy. I bought her some toy baby bottles with liquid in them that disappeared when you turned it upside down. Clara had always been a wonderful mother and had loved her children so much: caring for babies was second nature to her, and this nurturing activity was very comforting to her, even in the peak of her dementia.

The Good, the Bad and the Miracle

About eight months after Clara had lost her ability to speak, a new client came to stay with us. Her name was Dorothy and she did not have dementia, but she was physically unable to care for herself anymore. She shared Clara’s bedroom, but she wasn’t very sociable; in fact, Dorothy was one of the cruelest people I had ever met.

Every morning, while I would help her get ready for the day, I would give her testimony of the miracles Bob and I had experienced on the mission field. I would ask her if she wanted to receive Jesus as her personal Lord and Savior: she would curse God and say she wanted to go to hell. She added that she was going to take me with her and anyone else she could! All I could do was to pray, silently, for the Lord to soften her heart.

One morning, while I was doing the dishes, I heard a loud bang coming from Clara and Dorothy’s room. I rounded the corner and stopped just short of where they could see me, so I could observe what was happening. Dorothy was holding one of Clara’s dolls in her hand, and was banging it on the metal bars of her bed. She was livid, and was shouting at Clara: “These are just dolls, not babies! You’re crazy, treating them like they’re real, and kissing them all the time. Look!” Then she would bang the doll’s head again and again on the bed.

Suddenly Clara, who had not spoken a word in eight months, and who had not been able to communicate in sentences that made any sense at all for an even longer time, began to speak.

As she slipped her delicate hand through the bars and ever so gently patted Dorothy’s hand, she said, “Everything is alright. Jesus loves you so much. Please don’t be upset.” She smiled so sweetly and spoke with such clarity and sense of purpose that you would never believe anything was wrong with her mind at all. Clara never spoke another word again, but what she said in that moment was enough.

I really wasn’t prepared for what happened next. Dorothy jerked her hand back and recoiled from Clara, as if she had been bitten. Then she screamed, at the top of her voice, “Help me! Help me! Put me back in my bed! Put me back! Help, somebody help!” She seemed to have been simply shocked by the overwhelming love and compassion with which Clara had spoken to her, especially after what she had said and done to Clara’s “precious babies.”

I ran into the room and saw that Dorothy was frantic. I tried to calm her: I helped her back into her bed and she turned over and faced the wall. That night she refused to eat, or to speak to anyone.

The following morning, she had a stroke that rendered her speechless. She had a DNR (“do not resuscitate”) order on her chart, so when I called the doctor and her family, they told me not to send her to the hospital.

The next morning, while I was getting her ready for the day, I began giving her my testimony as usual, when she tapped me on my shoulder and barely uttered the words, “Please pray.”

It had taken all of her energy and will, but she managed to get those two words out of her heart and mouth–words that would give her eternal life. I asked her, “Are you ready to ask Jesus into your heart?” She nodded. I prayed for her and witnessed, firsthand, as her heart softened, as the tears fell down her cheeks and as she passed from death, into an eternity with the Lord as her Savior.

Clara’s family and I had been praying for months for the Lord to take her home to be with Kevin. She was having such a hard time swallowing, and had only been consuming two to three cans of Ensure Plus a day, and a little water. We really thought that it was way past time for her to go. But we also knew that our heavenly Father, in all of His infinite wisdom, had had one more task for his child Clara to perform. That task was to lead Dorothy to Him, and that is just what she did.

And They Went in Two by Two

Six hours after Dorothy accepted Jesus as her Savior, Clara died. And two hours after that, Dorothy died. We feel certain that Clara was waiting in the light to welcome her new friend into the Kingdom of God. Although we have cared for the terminally ill for fourteen years, never before have two of the residents in our care passed away on the same day.

Bob and I were able to minister to both families in our living room that day and all of us were in such awe of the heart and mind of God.

Clara’s family experienced the greatest sense of relief and peace when she went on home to be with the Lord. They knew that they truly had made the right decision three years before in placing her in our home, and they were blessedly free of guilt.

If you are suffering from guilt over committing your parent into the care of another, know this: you were no more born to innately know how to adequately care for your loved ones when they have special mental or physical problems, than you were born to know how to perform brain surgery. This is a very specialized area of care giving: so don’t feel guilty when you can’t be the one to do it.

There are good homes out there with experienced, extremely devoted and compassionate caregivers. Seek them out and after several interviews, select one. Know in your heart that you and your loved one deserve the peace you will be rewarded with after this decision is made.

Suggestions

If you haven’t already made a specific promise to your parent about the kind of care you will provide for them at the end of their life, don’t make one! Instead of promising them exactly what kind of care you will or will not arrange for them, assure them that you will always look out for them and their best interests, and that you will be there for them as much as you can be for the rest of their lives.

If you have made such a promise and you now find you cannot keep it, don’t feel guilty and trapped. Here are a few suggestions you might find helpful.

• Talk about the current situation with other close relatives involved in the decision–making process. They may share your concerns, and it is important for everyone to say their piece before your loved one is placed. It can be detrimental to your parent’s mental and physical health to be uprooted too often: they need to be settled in, and allowed to move into a routine. Knowing that their family is working together for their best interests, and is of one accord, regardless of the stage of dementia they are in at the time, is comforting and helpful to your parent.
• If you have been the primary caregiver and now are too worn out to continue, but one or more of your family members are trying to make you feel ashamed and guilty, don’t accept this burden of guilt. Many times, family members who have had nothing to do with the hands–on, day–to–day care of their loved ones will be the first to complain, criticize and condemn the primary caregiver for making the very difficult choice of placing them elsewhere. They wouldn’t dream of taking on the responsibility and work themselves, but become enraged and self–righteous at the very thought of spending any of their inheritance on care for their parents. Know in your own heart that you are making this decision to preserve the relationship between you and your loved one, as well as your own health, that of your immediate family and for your own peace of mind.
• Go together with other family members to visit different care facilities. Involve the whole family as much as possible so that you will have their support. Sometimes, just making plans and moving into action to find the appropriate placement can help to alleviate the feelings of guilt. They can help you make calls, check references and go to the interviews.
• Talk to other families who have gone through this process. You can find such people at Alzheimer support groups (call your local chapter of the Alzheimer Association for times and locations) and church support groups. You can feel safe in sharing your feelings in a setting with people who have experienced what you are going through.
• Talk to your pastor. You might even ask him to be present for the first family meeting when you all get together to discuss and make plans for your loved one to move.
• If you have a home health agency assigned to your loved one, call them and ask for the social worker in charge of their case. Ask them to come over and discuss the options available to you.

Above all, please remember that by holding your feelings in and not telling anyone how this is affecting you, the guilt will grow and hopelessness will start to set in. Seek help when you first start to feel the twangs of guilt: don’t wait until you are paralyzed by it.

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