Hospice Care At Home

THE OVERVIEW

My husband, Bob, and I have taken care of the terminally ill and people with dementia, such as Alzheimer’s patients, as well as the general elderly public, in our own home from 1989 through 2006.

“Hospice Care at Home” takes the family caregiver through every hands–on procedure needed to care for their dying loved one at home. It also helps the family understand the role that the hospice agency can play in their lives, explores financial and legal matters, caregiver burnout, how to plan a living memorial, the dying process and funeral planning.

If you have an elderly loved one who is dying and want to care for them in your own home, this book will teach you to provide quality care, regardless of your education level. You will find that you are not alone in dealing with seemingly overwhelming emotions and fear of the unknown such as guilt, fear, denial and even anger. One chapter describes what you are feeling and gives you a resolution to apply immediately.

“Hospice Care at Home” also gives you creative tips and practical suggestions on caring for your loved one and makes your job at home much easier.

This book will also help medical professionals, hospice agencies and home health agencies by giving them an excellent and fresh resource to refer to their patients and their families.

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 that family caregivers find themselves in every day. The chapter on “Ten Keys to Avoid Caregiver Burnout” addresses these issues, identifies and then solves the problems they are having and gives the family caregivers “permission” to seek help and finally begin living again by caring for themselves.

“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. Many of them are now electing to provide care in their own homes in lieu of a more institutional setting for their loved ones’ final days.

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.

One of the main reasons that families don’t care for their dying loved ones at home is because they are under the misconception that they must have a doctorate or nursing degree in order to give care to someone who is dying. They don’t feel qualified. This book hopes to give people the confidence they lack, dispel these myths and return to the days, not so long ago, when all people cared for their own dying in their home.

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THE FOREWORD

by Dr. Mitchell Finnie

Before the 1960’s, families cared for their own dying loved ones at home in lieu of hospitalization. Nursing homes did not exist. It became necessary for there to be a qualified place for the ailing elderly when men went off to war and wives had to take over their husbands’ jobs, therefore nursing homes became the alternative to hospitalization. As time went by, modern working families completely moved away from caring for their elderly and dying loved ones.

When I first began my medical training, hospice care was just starting to be recognized as a beneficial tool. In days prior, it was not uncommon for patients with terminal illnesses to be shuttled down a hospital corridor to a remote room to be left alone to die. Often, the diagnosis was not discussed with the patient and hospital personnel minimized contact with the terminally ill. Unfortunately, as a result many people died a lonely death. Most family members had never been exposed to death, much less experienced the process of someone dying in their home.

The word hospice comes from the Latin word “hospis”, meaning host and guest. Hospice is the root word for hospitality, hospital, hotel, hostel and hospice in English. A large part of hospice care was bringing the American family back to the dying process.

Fortunately, hospice care has become increasingly common over the past two decades. The pendulum has swung back to patients staying at home during their dying days. An entire generation did not experience family members dying at home.

Working with various hospice agencies, I have seen hundreds of hospice patients. The vast majority spend their final days in their own home, or in the home of a loved one. As a physician, I tend to see the patients and families when there are difficulties for the patient to remain home during the death process. At times, loved ones can be reassured by caring for them at home, that the proper care is being provided. Other times, a hospital setting is required to put the family members at ease or to control symptoms of the patient.

From my experience, educating family members about the dying process is critical. “Hospice Care at Home” is an invaluable tool for families to assist in the care of their loved ones who spend their final days at home. The practical nature of the book serves as a wonderful resource for family members and loved ones. Starr and Bob, who specialize in hospice care in their own home, have accumulated a wealth of hands–on experience over the past 17 years, which is evident in the practical details of the book. Because the information shared is from personal experience, it is genuine and down–to–earth, and will educate and enlighten the reader.

The concrete details of the book walk the family caregiver through the death process. Such practical information as the physical signs of dying, working with funeral homes, what to do on the day of the loved one’s death and steps to take after the funeral are related from personal experience and serve to educate the reader caring for a loved one in a home setting. Anyone who provides care for a loved one who is dying at home should possess a copy of this book.

Not only do family members need such practical information, but also those in the health profession. The knowledge to be gained from the book will benefit doctors, nurses, chaplains, social workers and other members of the hospice health care team. Any physician who provides primary care has a need for the information provided in “Hospice Care at Home.”

It has required tremendous strides for our society to return the dying process to the home. People are desperate for resources to help them provide care for their loved ones in their final days. Starr’s book provides this information. It helps one understand the role hospice plays and the unique roles of each member of the hospice team.

Fortunately, death is once again being treated as part of the life cycle and is being brought back into the home. It can be a frightening and intimidating task, but with the help of the hospice agency and books such as this, people are staying home in their final days and experiencing reassuring comfort in being with those who love them most. The greatest gift someone can give is allowing a loved one to die in a family, friendly, home environment.

If you will take the suggestions and practical advice provided in this book to heart and apply them, you can more easily give this gift to your loved one.

When all has been said and done, as you look back on this season in your life, you will experience great satisfaction in knowing that you were there when it meant the most.

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SAMPLE CHAPTER

Chapter Eleven

Physical Signs of Impending Death

(Warning: this chapter is highly graphic but extremely necessary for the caregiver)

There are many times a dying person will simply pass away quietly in their sleep in the middle of the night. There may or may not have been warning that the time was near. Other times, the entire family is there with them as they breathe their last breath. We have taken care of terminally ill people in our home for many years and seen many deaths. We want to pass our experiences on to you now so you will be a little more prepared as to what happens before, during and after the death of “Hospice Care at Home” cover your loved one. You will, in turn, help your family members understand so that the dying process doesn't come as a shock to them. When you notice a change in your loved one, call his nurse immediately. Everyone has their own personal and unique way of leaving this world, but there are definite changes and some things all bodies go through when the shut–down process begins. Your loved one may experience some, none or all of these changes.

For example:

Drastic, Noticeable Changes

• He sleeps most of the time now.
• His breathing pattern radically changes.
• He is not aware of anyone in the room even though his eyes may be open. He doesn’t respond to your touch or voice anymore.
• He can’t/won’t drink fluids anymore.
• He is not urinating or defecating like before.
• The urine output in his diaper or foley bag has mainly blood in it now.
• His room has a foul odor that is unidentifiable and you can’t seem to get rid of it.
• His feet and hands are getting cool/cold to the touch when they were usually warm before.
• He doesn’t move anymore except while struggling to breathe.
• He has completely stopped talking or making any sounds.
• He stopped being combative and/or verbally abusive.
• He is talking to people in the room that you don’t see.
• His skin color has changed.
• He doesn’t want any visitors.
• He is extremely restless.
• He starts taking his clothes and/or diaper off and it isn’t because he is hot.

His nurse will come over and take his vital signs and give you a report. In most cases, she will leave after the exam but if you want the hospice chaplain or social worker to come and wait with you, just tell her so she can arrange it. Call your pastor or priest and ask him to come over if he can, to support you and your family.

When the end is near you must realize that there is nothing anyone can do. All you can all do is wait for it to be over. There are no life–saving measures to be taken by hospice. They will make sure that your loved one is comfortable and pain–free.

You also need to call anyone who asked to be there at the end.

Now is the time for you to say your last good–byes to your loved one. This may be very hard for you to do, but you need to say it. Don’t try to convince him to stay.

Hearing is the last sense to go, so even if he isn’t able to respond to you by opening his eyes or squeezing your hand, still talk to him and tell him how much you love him. When everyone has said their good–byes and you are ready, tell your loved one it’s okay for him to depart. Sometimes that’s all people need to let go.

Changes in communication

Your loved one may be very sociable and talkative up until a few days before he dies but suddenly he stops talking to anyone you can see anyway. He seems to be hallucinating and talking to people who aren’t even there or are they?

Throughout the centuries, there have been documented reports of dying people being visited by their dead relatives who had gone on before them. These conversations give us a glimpse into the world waiting for us when we go, so just listen, don’t discourage or dismiss them

Skin breakdown worsens

Your loved one may have already been experiencing skin breakdown evidenced by bed sores on various parts of their body but toward the end, you will see more of it. It may seem that no matter how often you turn or reposition them, there is a new red or purple blotch every day now

One reason for this is that the body is starting to shut down. The brain is not sending the skin repair commands to the skin and blood cells as it did before he got sick

Also, your loved one is not taking in liquids and food like he did before so now he is getting dehydrated and his skin does not have the hydration needed to remain healthy. All you can do at this point is to gently rub out any red spots and keep him turned every 2–3 hours around the clock. When he gets to the point that he cries or yells out in pain when you turn him or even touch him, stop turning him immediately.

Yes, that goes for baths too. I don’t allow our patients’ hospice home health aides to give them their baths anymore when they are nauseated, feverish or in pain. I keep their diaper area as clean as I can, taking care to move them as little as possible for even that. When they are this close, there is no reason to move them. There are, however, many reasons not to move them.

The skin may get worse when you stop turning him and he may develop a stronger odor just before the end, so light a strongly scented candle or incense or use a spray odor neutralizer in his room. Keep his bed clothes freshly changed and all garbage taken out immediately to cut down on odor and germs.

Another sign that the end is drawing near, is mottling. “Mottling” is a bluish or reddish marble–like pattern which appears on the skin, usually on the elbows, knees and feet. It moves up the feet to the ankles and the dying patient has usually expired by the time it reaches mid–thigh. This is caused by a lack of circulation when the blood begins to pool. The skin takes on a translucent appearance, feels very cold to the touch and mottling is very apparent. Not all people mottle though. It will be a combination of many signs when death is close.

Swallowing & choking problems develop

The body is truly amazing. Our spirit and soul are as well. They know when it is time to evacuate the body and so they begin the preparation for their departure from this earth

The body says “I’m getting ready to shut down, so I will not permit any more food or liquid to enter me.” When we try to “force” food or liquids at this point, the body chokes on the food because the esophagus stops working in compliance with the body’s wishes. “Failure to thrive” is what the hospice calls this behavior

If any liquid actually makes its way down, it goes into the wrong place. Instead of getting to the stomach, it goes into the lungs and then the body has to deal with pneumonia eventually which is accompanied by high fevers. This makes the dying so much more uncomfortable for the body.

When food or liquid gets shoveled in by a well meaning and loving caregiver, it will either go into the lungs or the stomach. If it goes into the lungs, the body will choke or vomit if there is still strength to do so. If not, the body may suffocate to death right then.

If it goes, and remains, in the stomach, the bowel has already shut down so the food just sits there and only gets partially digested. This is why the patient gets constipated and ceases from having bowel movements at the end. It won’t do any good to administer laxative suppositories because the body won’t react to them and all you will accomplish will be to make your loved one more uncomfortable. It also won’t help to give suppositories for fever for the same reason.

The reason that some dying people swell up in their extremities, such as their hands and feet, is because the body is holding on to any liquid left because it “knows” there won’t be any more permitted to come into it and it uses what’s there to keep cooling itself as much as possible, to the very end.

This is one reason that the urine output decreases, usually turns dark red with old blood and then stops altogether.

Breathing problems become more apparent

The body is starting to shut down all of its organs so the lungs have to work harder to get oxygen to all of the existing blood cells. This causes a dramatic increase in respirations. Another reason for the increase is that if the patient has pneumonia and/or the lungs start to fill up.

“Respiration” is the term used for each breath taken. The normal number of respirations per minute is 16–18. This number usually increases in the dying person to as high as 60 per minute! We have seen some of our patients go on like this, day and night, for as long as three days until their heart finally gave out.

The Death Rattle

When death is coming very soon, the death rattle begins. This sound is a result of mucous trapped in the throat. Hospice will provide Atropine drops to place under your loved one’s tongue to silence the gurgling by helping to dry it up.

When the end is only a few hours away, the dying patient will start pausing between breaths. Respirations go down to between 6–8 per minute, then 4–5, and then finally stop completely. In many cases we have seen the family grieving the death of their loved one for 1–2 minutes when all of a sudden, their loved one breathes one last time. This can be startling to the family, to say the least. The most important things to remember is not to panic, comfort your loved one and enjoy the last few days or hours he is with you as best you can. These are the most common signs of impending death.

The Don’ts

• Don’t try to get him to talk when he doesn’t want to.
• Don’t correct him when he says something that isn’t true.
• Don’t try to force him to eat or drink by manipulating or threatening him.
• Don’t force him to stay awake when he wants to sleep.
• Don’t force medication on him if he can’t swallow it.
• Don’t try to force family members to sit with him or to even go into his room if they don’t want to.
• Don’t ask him questions about anything.
• Don’t sob in his presence.
• Don’t talk about funeral plans with others in his presence.
• Don’t argue with others in his presence.
• Don’t withhold his pain medication because you are worried that he’ll get addicted .
• Don’t suffer through this alone. Hospice is there to help you. Just ask.

The Do’s:

• Do swab his mouth twice per hour with mouth swabs.
• Do stroke his hair gently.
• Do kiss him and tell him you love him and that you are there for him.
• Do keep an eye out for any part of his body that touches something hard to avoid bedsores.
• Do keep his bedding and clothing dry especially if he’s perspiring.
• Do get your rest.
• Do eat and stay well hydrated yourself.
• Do take breaks and allow others to stay with him so you can get out of the room or the house.

We aren’t just filling page space with all of these suggestions. Please read and re–read these points and then take them to heart and apply them. They can definitely make the difference from you getting burned out emotionally and physically and/or you’re helping your loved one make this final passage of his life easier.

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