Help Me

Coping with the
Nursing Home Decision

by Jean Harker

Preface
Reasons for Entering a Nursing Home
Losses That Are Experienced
Reactions to Loss and Transition
Conclusion
About Jean Harker

Preface

People who have to leave their homes and families and move into a nursing home experience lots of grief and loss. This article is designed to help the family members and friends to better understand these losses and how they are expressed in words, actions, and/or emotions. During this time of change these people are experiencing one of the most difficult periods of their lives. Not only is it difficult for the person making the move, but also for that person's family and friends. Handling grief and loss also involves the staff and the volunteers working in the nursing home.

Frequently people being placed in a nursing home look at it as a one-stop place before dying. This feeling has nothing to do with the quality of care that the nursing home offers, but is just their way of thinking. Such thoughts are very understandable, because few people ever return to a "normal" life after being admitted to a nursing home facility. It represents a one-way street which no one really wants to travel, but people seldom have any choice. Lots of these individuals and their families and friends have little or no help during this very rough time in their life's journey. Their losses and grief seem overwhelming to them. They have nowhere to go for comfort, and quite often no one who will listen to their grief story.

This article explains some of the losses that these people experience, their reactions to these losses, and ways that families, friends, volunteers, and staff might be more understanding and helpful to them. Also explored are ways that might help them to heal from some of these many griefs so that they can live the last years of their lives in a more positive way and enjoy life as much as possible. Since each person is so different and unique, there are many ideas and thoughts to explore which may be beneficial in helping them to cope.

As you read through this article, you will need to pick out the losses and ideas that are speaking to you or your friend or family member. Since each of us has unique concerns and an individual way of life, we need to choose the suggestions and options that fit each person individually.

Reasons for Entering a Nursing Home

There are many reasons why people are faced with the major decision of entering a nursing home. Very few people, if any, enter a nursing home because they want to. Usually there is a factor beyond their control which forces this decision on them and/or their families. The negative feelings and thoughts that arise from the need to enter a nursing home are not necessarily because of the nursing home, but because of the possessions and freedoms that must be given up in order to enter. Also significant is the fact that there are very few people, if any, who are ever able to go back home after entering a nursing home facility. They have just sort of reached a point of no return, and this is hard for anyone to accept.

One of the major reasons for entering a nursing home is that the person's health is poor, requiring nursing care that is not available to them at home. Due to unpredictable changes in insurance and hospital policies, many elderly people are forced to leave the hospital after a very short stay but are still in need of care, leading them into a nursing home situation. Home nursing care is not available in every area of the country, and sometimes, even if it is available, people cannot afford it and/or their insurance does not cover it. These situations leave the person with no other choices.

Families today are quite mobile and in many cases live in scattered parts of the country. Years ago, many of the family members might be located within a few miles of their original home. When an elderly person needed assistance or care, family members were available locally to help facilitate this care. People would be cared for in the homes of their children, or some of their children would move into the parent's home to be available for care. Today this kind of care is seldom possible because typically the husband and wife both work, or a single child must work in order to live. So because of the lack of available help within the family, many people needing care have no choice but to enter a nursing home.

Communities were much closer-knit years ago than they are today. Neighbors would assist an elderly person and give the needed care. Today such assistance is seldom possible because neighbors do not even know each other's names. Lawsuits and legal restrictions have frightened neighbors away from helping each other as in former times.

Churches were different in the past also. Caring congregations would bond together and offer assistance when needed. Churches used to be very local groups in which everyone knew everyone else, but today people are more mobile and travel greater distances to church. Since church membership is not limited to people from just the surrounding community, true closeness rarely exists in the churches. Many churches have become more of a social gathering than a helping group as they were in the past. Lack of assistance from church and community, then, is another cause for someone to need the care of a nursing home.

For some people, caring for a home or an apartment has become more than they can handle financially or physically. Too much work needs to be done to maintain the home and keep it clean and livable. Also, a house or apartment may now be too expensive for them in addition to their other expenses. Several older communities are becoming overrun with violence, gangs, and other criminal activity, and these elderly people do not feel safe in their homes when they are alone, nor are they able to make quick decisions or movements. They may fear falling or other injuries occurring with no one nearby to help them. Fears such as these may make a decision to enter a nursing home seem wise to them.

Another major problem for many elderly is the loneliness. Their children have grown up and moved away, and now have families of their own. They often forget Mom or Dad, or have neither time nor money to assist them. Their old neighbors may retire or move away, or they may die, leaving the elderly person feeling really alone. For many elderly, loneliness is quite a major problem. They are unable to drive a car to visit favorite places, but instead just stay in their house alone. The grief and sadness of being alone may overwhelm them, and thus the need to make a change is real and pressing, even though they would really prefer to be in their own home. At least in a nursing home there will be other signs of life around them.

The above are some of the many happenings in people's lives that make a decision to enter a nursing home or retirement home necessary. Sometimes the elderly have to make their decision alone, while at other times they will have help in making this choice. For some families there is the very difficult situation of role reversal in which children must make the decision. The parent may no longer be able to decide because of mental health problems, a stroke, Alzheimer's disease, or various other handicaps. Making the nursing home decision with roles reversed can be quite hurtful and sad for both parents and children. Parents have in the past made nearly all of their own decisions, and the role of the child was to respect the parent's ideas and suggestions. With those roles now reversed, each has to accept a new position in life while giving up a previous one. To do so is painful if the parent protests or rebels against the move.

Losses That Are Experienced

In this chapter we will discuss the many losses that people experience when they need to enter a nursing home. Each person, being unique and special, will experience unique kinds of losses, with no set pattern to them. Readers will need to select the losses described here which apply to themselves or to the person they are helping, or the one who is special to them. Maybe few of the losses described will match your family's situation, but there may be many which fit right into your life's journey.

These losses are described from the point of view of people who are entering a nursing home. Losses do not imply that a nursing home is wrong or bad, but they are discussed in order to show how people experience their losses.

Loss of independence is one of the greatest losses. Having independence is something that nearly everyone has worked hard to accomplish in a lifetime. Now that independence must be given up, it seems that everything they have worked for in life is now ended, and that their accomplishments were for nothing. Losing their independence in favor of dependence on the nursing home staff often gives them the feeling that life is just about over. Losing most of their self-esteem, they feel they are no longer worth much. Their own parents were proud of them when they became independent, and now they see themselves as a burden. They have little or no choice regarding what they will do or when they will do it. Most activities in the nursing home are done according to a schedule or depend on the availability of staff.

Freedom is to a great extent sacrificed and missed. The freedom to eat whenever and whatever they wish, as they had at home, has changed into eating only when meals are served. They must also eat exactly what is served or do without, unless they are fortunate enough to have a friend who will bring them some snacks. Previously, they enjoyed the freedom of going out to eat when they were able, a luxury that is no longer possible. They formerly had the freedom of cooking whatever they wanted in whatever way they liked it. Maybe they liked everything fried, and now nothing is fried. Maybe they liked lots of cakes and cookies, and now the desserts are fruits. They formerly had the freedom to invite others to share their meals with them, and now this is often impossible.

In a nursing home, people may lose the freedom of showering when they so choose, since baths are now given only when the nurses have time to do so, and in whatever manner the nurses choose.

Their laundry used to be done as they wanted it done, but is now done as an institution does laundry. Their "good" things are thrown in with all of the other laundry. Their names must be attached to all clothing, even to very special garments as well as other personal items.

The freedom to watch TV or listen to the radio at any time they choose may also be lost, especially if they have a roommate.

The loss of their home or apartment, their furniture, and their possessions is tremendously difficult. Often they must give up heirlooms that have been in the family for generations, and perhaps keepsakes associated with their deceased spouse. Having these items may have been preventing excessive loneliness, and could have been their hope for the future or their assurance that their spouse was always with them while that item was near.

For some people the dwelling they lived in at the time of the nursing home decision was their lifelong "home" place, the place where their children grew up, and they have many pleasant memories of it which they can sit and enjoy. Perhaps this "home place" was a house they themselves designed and built along with their spouse. If so, there will be many losses connected with leaving that home or selling it. Furniture fits into these same loss categories: some of it owned by their parents, some of it bought soon after their marriage, and some of it played on or slept on by their children. These thoughts and memories are most important for people as they grow old. They focus on important things from the past as they experience so many losses and changes related to the present and the future.

Another area of loss is friends and neighbors who do not come to the nursing home often to see the person. The elderly may have received great joy from watching through the window as a neighbor or a child left for work or school, or as they played or worked in the yard. This joy is no longer available to them as they sit or recline in a nursing home many blocks or miles from their former home or apartment. Not to be able to watch neighbors breaks their long, familiar schedule, causing another loss for these people who are creatures of habit and whose schedules have become a vital part of their lives. Many people can tell the time of day by an event outdoors, such as a certain neighbor walking or driving by. Living in the nursing home has changed all that, creating a loss that they feel.

Another major loss is that of church or community. Because of the location of the nursing home, people often have to leave their church and community area. If church was a vital part of their lives, leaving it will create a difficult loss. They will find it almost impossible to become involved in a new church and feel a part of it when residing in a nursing home. At a time in life when church and community are so very important, giving these up can be quite difficult or even devastating. It becomes nearly impossible to meet new friends and acquaintances while living in a nursing home.

Losing their regular doctor is a difficult loss for people entering a nursing home. Because of a location change or for other reasons, they must change doctors. If their regular doctor has been one in whom they have long placed great confidence and trust, losing that doctor will be felt as a severe loss, especially since there may now be major medical decisions that an unknown new doctor will be helping them make. Just when security and stability are especially needed, they are gone.

Mentioned above are just a few of the difficult losses which people experience as they need to make a decision to go to a nursing home. Considering these losses may help us to better understand the emotional difficulties these people are undergoing in this stressful phase of life's journey.

Reactions to Loss and Transition

Following is a discussion of some of the reactions which people have as they experience the losses mentioned earlier. Again, we are all special and unique, so the reaction to losses will be different for each person. As the old Indian prayer states, it is hard to know how someone feels or thinks until "we have walked a mile in his moccasins."

Some of the many questions which affect people and their reactions to losses are: How have they dealt with other losses in their lives? Did they seek help and support? Did they internalize the loss and limit their connections with other people? Have they customarily been positive thinkers? Do they have a strong faith? How is their self-esteem? The answers to all of these questions will influence the way they respond to entering a nursing home--a major loss in their lives.

One of the most common and also most difficult reactions to loss is anger, a feeling which can override every other feeling, such as sadness, hurt, loneliness, guilt, and others. Anger is a cover feeling in that it allows a person to hide all other feelings underneath it. People experiencing anger will often push blame onto others, especially onto dear family members or friends (usually the ones who help them the most). If they can push some blame, they can avoid dealing with their own feelings.

For example, I might be placed in a nursing home because I need skilled nursing care that is not available to me in my home. I then become very angry at my son who has made the decision to place me there. I direct all my thoughts of anger toward him in order to avoid dealing with the hurt and sadness I am feeling as I cannot take care of myself. I am losing my home, friends, church, community, and many other comforts because I can no longer live alone. Anger allows me not to think about the fact that I probably do not have much time left to live, and that I should value each moment I have. My anger toward my son for placing me in a nursing home can mask out many weaker but uncomfortable feelings and thoughts.

A reaction of anger to these losses may cause further losses, such as a break in the relationship between child and parent, which can cause the burden for both to be much heavier. Losing a child through death or just through anger can be one of the most difficult losses that we ever experience in our lives. Our children are among our most precious possessions. Loss through anger is very difficult for the children as well as for the parents, and will often stop all interaction between them. If the parent-child relationship becomes stressed or broken, the whole family may experience huge losses which may grow even worse. These broken relationships quite often are never mended or renewed, creating much hardship as the parent eventually dies and the child or children grieve.

As a family member working with loss through anger, let go of the things in this interaction that are not your problem. You need to have a support person who is non-judgmental and who will allow you to tell your story and share your feelings without trying to stop you or change your thinking. With this support person you can share your "gut" feelings. As you express your feelings and get them outside of yourself, you gain a much clearer thinking ability. A very large percentage of your problems you can solve by yourself, but you occasionally need a sounding board so that you can use all of the ability you have. While talking about your situation you will be able to better see whether you are really comfortable with your decisions and what you have done. Were you open and honest about your thoughts and decisions with your family member or friend? These and other questions are ones that you need to discuss as you share your feelings and thoughts.

Did you do it for them or for you? To have made the decision because they really needed your help and maybe could no longer successfully make decisions for themselves--that is usually a good decision. If you did it so that you would not have to make contact as often, or because you wanted to control their life for whatever reason, or because you simply disliked their choices, then maybe you should rethink your decisions.

Did you do it to help them or change them? If you did it because you wanted to "fix", "cure", or change them, then possibly you need to rethink your decision. If you did it for them because they actually could not stay alone anymore, or they needed help that was not available to them, then most likely you have made the right decision.

Being open and honest is a help to both you and them. This leaves nothing that is not openly discussed. No one assumes anything, but rather they know, if they choose to listen. If they do not listen as you talk, you have at least given them the opportunity even if they choose not to accept it. For example, they may know that your decision to put them in a nursing home is not because you do not love them or because you do not care for them, but rather it is because you do not have the ability to do the things that are necessary for skilled nursing, that you cannot afford to stay with them and quit your job because your family needs you and your paycheck--and so on. It is difficult for people who are experiencing losses to think clearly since grief and loss affect their entire system, and at the time of the loss almost nothing in the body seems to work correctly. They may be so overwhelmed with the loss of body functions, along with the fact that they are approaching death, that they are physically unable to take care of themselves. If the above conditions describe their lives, then it will be impossible for them to convince themselves of any need for being in a nursing home. It is just too much for them to deal with.

Another major reaction to all of these losses is to withdraw from participation in all activities, even eating meals. Because of having to face so many changes while often having physical problems too, it is just too difficult to reach out again for new friends, new ideas, or new thoughts. Instead of attempting anything new, they will simply stay in their room or in their bed, hoping that it will all go away. Frequently they just do not know how to try again, or they are not physically or mentally able to accomplish anything new. Because they are not the person they used to be this kind of reaction is again very difficult for the rest of the family and friends, who in turn have to grieve the loss of the parent or companion they used to know.

Sometimes family and friends want to "change them" or "cure them" to make them "normal" again, which is not possible. Patience is a key word in this type of situation. We cannot change someone else--we can only change ourselves. If a person is at a certain place in his or her journey of life, we need to accept this. The first thing we need to explore is: are they really physically and/or mentally able to do what we are hoping they can do? We need to be sure that we are answering this question honestly, and not just in the way we need it answered in order for us to handle it. It is a real grief for children and family to accept the fact that a parent or grandparent can no longer do the things they used to do. Commonly we just keep trying to push the blame on the other person in order to avoid dealing with our feelings and our grief about losing that significant person we used to have in our lives, even though that person is "still alive." We need to work hard on accepting them where they are and doing all we can to encourage and support them in their difficult journey.

As the person has to try to adjust to all the various changes, they are often just overloaded with grief and hurt and other negative feelings, and they may make statements such as: "I just wish I could die too"; "I wish that God would have taken me first"; or "I'm tired of living". Statements such as these are quite difficult for family and friends to hear and accept. In response, they may try to change the person or close the person off when they talk. Trying to prevent the person from talking about such things will only cause them to turn their feelings inward and perhaps develop more severe problems later. They need the freedom to express these feelings outwardly in order to relieve some of the pressure and sadness they are experiencing. Quite often, just letting them express these thoughts and feelings outwardly can be very healing for them. No reply or comment is necessary--just a slight indication that you are listening to them. Most of the time their negative comments are really cover statements for their true feelings. It is often very helpful to do reflective listening as they talk to you in this negative manner. For example, they might say to you "I don't know why God didn't take me first." Your reflective statement could be "It sounds like you are really sad or lonely now." A statement like this gives them an opportunity to share their real feelings with you. You are giving them a real gift by doing this, because as they proceed to share their feelings of sadness or loneliness, they may begin to heal. Remember that the only way we can heal in grief is to express the grief outwardly in some manner, and the above technique is helping them to do that.

Repetition is another way they may choose to deal with their losses. It is quite helpful to their healing if they can unload their grief or loss story outwardly. The more they tell it, the healthier they will become. Such a technique requires the caregiver to be very patient while continuing to listen to their story. I have learned that to listen in a different way is helpful. As they tell their story repeatedly, listen for the things they do not say, or the parts that they leave out, which may indicate to you that they are healing in their grief and gives us more encouragement to listen patiently non-judgmentally.

As people experience losses in their lives, they often regress. Regression is a way for them to return to a time and place where they felt safe and loved. Older people usually regress to a time when they were children at home. Mom and Dad were present then and were able to help them with their problems. Now, as they are in a nursing home, they will talk about their childhood days in order to feel safe. They may become so involved with this regression and grieve so much that they will rely on this device most of the time. They will become so involved in that safe time that they will apply the names and actions of many years ago to friends and others in today's life. Even if we correct them, their behavior will not change. They are very focused on the safe past. Sometimes caregivers and family feel hurt when they are not identified properly. However, people who are using regression need to be accepted where they are, for we understand how helpful it is for them to feel safe.

Fear is another reaction to the losses--not only fear of the many changes taking place in their lives at this time, but perhaps also the fear that they are either dying or soon will be. Being a good listener is very important. If they share their fear and express it outwardly, and if we reflect back as we listen, they can understand the fear and the options they have. Also, to offer support or direct them to someone who can be supportive can be quite helpful when fear is involved.

Helpless feelings may be very prominent at this time, and may be quite accurate. If they are unable to do things for themselves, they may need assistance for most events in their lives. As we listen to their story, we can help them see the small things that are positive in their lives and anything they may be able to do for themselves. Pointing out the small positive things is very important when they are overcome by huge negative pressures. We need to help build their self-esteem in any way possible. Finding words to describe the positive things they can do or are doing (no matter how small) is helpful, as well as helping them to look at alternative possibilities. Seeing anything positive is very difficult for them when they are grieving or experiencing loss.

Conclusion

Entering a nursing home is a most difficult time of life, with all of its changes and losses. The more help, love, and caring you can share with these people and their families, the easier it will be for them. Listening to them is so important as they share their story with you. Listening helps them to express this story outside of themselves, and it is also most helpful to you in understanding their thoughts, concerns, and griefs. As you understand their story better, you can be of more help to them in this part of life. Let them teach you where they are so that you can walk with them. One of the greatest gifts you can give anyone is to be a good non-judgmental listener--a gift that money cannot buy. Listening indicates that you really care and feel concerned, and also that you really want to help.

Sometimes people do not have a choice as to what they must do, but we can help their lives be the best they can possibly be under the circumstances. Be there for them and show that you love them and care.


Acknowledgment

My greatest thanks to Alan Harris for his professional assistance in editing and posting this article on the Web. He is a wonderful friend who has provided lots of valuable support and encouragement to me. Thanks, Alan!
--J.H.

About Jean Harker

Jean Harker (1941-2010) gave the gift of the above article to the world in 1997. At first she had in mind to publish it as a book, but I persuaded her to have me post it on the Web, where it could be found and read freely by anyone who was needing her insights on the nursing home decision during a critical time.

Jean's life was filled with helping others, as a hospice volunteer and as the manager of a food pantry in Yorkville, Illinois. She was a benevolent dynamo and an inventive thinker. A few years before she passed away, she told her friends that she had started not being able to "get my words." This problem progressed until she had to reside the last few years of her life in a nursing home in Sandwich, Illinois.

I am leaving her article on the Web as a monument to her helpfulness, and so that she may continue in absentia to assist others who are sorting through the nursing home "Help Me" moment.

--Alan Harris


Poems of Empathy and Support

Copyright 1997 by Jean Harker. All rights reserved. Copying and reprinting are permitted so long as credit is given and wording remains unchanged. Not to be sold in any form.