Caregivers Archives 2008

Thank you, Claudette, for your helpful thoughts. Caring for my mother in the nursing home by Claudette My mother suffered a bad stroke (her 4th) and had to be in a nursing home for over 4 years until her death.  She was brain damaged, speechless, but we communicated with her facial expressions or blinking of her eyes.  I made up my mind I would go into that nursing most every day with a smile on my face, a cheerful greeting, and carry on a conversation with her like she would be answering me.  Many times I cried or hollered the whole way home, but not once did I ever go into her room without a smile, cheerful greeting, and talking to her. I would rub lotion on her arms, legs and face which seemed to help the dry skin and relaxed her -  most of all it was my touch on her.  Even when I could tell by the look in her eyes the blood flow to her brain was not good at that time I continued to do my normal routine. I missed less than 4 weeks in over 4 years and when I was not available, my husband or daughter would go. We never went at the same time any day of the week.  Do not let the staff know when to expect you - you learn a lot that way.  I overheard an older tech one day telling a new tech "Watch out for her, she goes straight to the administrator with problems."  I learned to not complain to the techs or nurses but go to the head of the nursing home and complain there.   I do not regret one day of going to that nursing home even though I dislike nursing homes.I even taught art classes - painting on t-shirts and pant sets that we had to furnish ourselves.But the patients that took part in the activity had a ball and so did I.  Also made lap blankets for wheel chair and Jerry chair (recliner) patients.  Doubled t-shirt knit and tight zig zagged (lettuce edging) around all the edges with different colors of thread I had that needed using up.  The staff got to know me and me to know them and it paid off in better care for my mother, plus knowing that one member of her family would be there every day at sometime. I was taught from an early age that when my grandmother or mother became unable to care for themselves to put them in a nursing home and keep a close check on them.  I do not regret one day of doing what I was taught to do.  Before my father died years before my mother, he told me, "Hate to leave you with what is facing you with your mother, but I have taught you what to do and how to do things." I hope my writing will help someone else taking care of a family member in a nursing home.  It is tough, but very worth while. Lots of nursing home patients never ever have one visitor and that is sad.  When mother died I gave her clothing to the nursing home and to special patients that would enjoy her better clothing. From the Mail I have been trying to help a first cousin with dealing with her mother's situation of being in a nursing home and not being well mentally.  I have been down that road with my mother's mother and my mother.  It is hard to write what to do. But they are a long distance from where I live.  I have told my cousin to put on a happy face when visiting the nursing home, cry on the way home if necessary, talk about what is going on in your life even if the other person does not respond. My own mother was speechless after a paralyzing stroke and I talked to her just like she would answer me which she did with facial expressions or blinking of her eyes.  Lost my mother 7 years ago this week and it is still hard, as I was an only child and only grandchild of her family. Just felt the need to share this with you.  -anonymous NOTE FROM PAT: Thank you for writing and sharing your thoughts, this is exactly what I want you to do. I know your cousin is thankful to have you to talk to, one who understands and has been there. I think it is great how you spoke to and "listened" to your mother, while she could not communicate verbally. I'm sorry for your loss. Because I have not experienced the choice of a nursing home with a parent (except for one week after my father's stroke), I was looking for an article to follow up with this note. I found the following article and I think it is one of the best I've read. While it may hurt to read what our parents may think and feel when they are first placed in a nursing home, it is good to realize this in order to help them with their adjustment. And for others who visit the elderly who have to be placed in a nursing facility, it is also good to read this in order to know how best to respond to their comments. The main key, as always, is to listen.  If any of you are experiencing negative reactions from your elderly parents who you had no choice but to place in a nursing facility, or if you know of a situation like this between the parent and child, you can be a good listener, reinforce the fact that the parent is loved and that more care was needed than was possible to give at home. The adult child needs to be convinced of this as well -- I know a great sadness and feeling guilty would be a normal response to placing their parent in a nursing home and they need someone who will listen to them and support them in their very difficult decision. Help Me Coping with the Nursing Home Decision by 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. Copyright © 1997 by Jean Harker. All rights reserved. http://www.alharris.com/harker/helpme.htm#Links At Miz Beth's Bedside Well, it is Monday night, May 5, 2008. Miz Beth and I had a pretty good weekend, all things considered. We have her "pain management", anxiety and sleep meds worked out pretty well. For a while, she had her nights and days mixed up but that is better now. She no longer gets out of bed but seems to be relatively satisfied there. Once in a while she can drink from a straw but most of the time I just hold the end of the straw and capture water and put it into her mouth. The nurse suggested crushing her pills and mixing them into Activia yogurt. This works but often I can put the pill on her tongue and then put water in her mouth with the straw and she will swallow it. Some of her pain meds are liquid or suppositories.  Beth knows everyone and really enjoys short visits. She remembers many things that we talk about. She will correct me real quick if I say something that is wrong. Her hearing is real good so don't try to "sneak" anything by her.  Yes, as I am sure you are wondering, she sometimes mentions dying. Our son Brad helped me with that one when I discussed her asking me if she was going to die. He said she had asked him the same thing. He told me that he had said to her that she would remember that she had been sick and in pain for many years now. She remembers that. He then told her that when it was time for her she would not have pain and she would be able to "see" real clearly. We continually reassure her that she has been a good wife, mother, grandmother and Christian. We remind her that she has been a good influence and caused many people to become Christians.  It is a real comfort to us to be able to say with confidence in "God's Word" that she will be with Jesus and those she has loved in this life. Love and the soul are the only things that can pass through the "valley of death".  It is that confidence that allows me to stay by her side through all this without being overcome with emotion. I have to be very patient with her when dealing with her "daily needs". Sometimes she doesn't understand the instructions to "swallow", do not spit it out. Some days she is really restless. Distinguishing between "pain" and "anxiety" and knowing which med is needed takes some of this patience.  She is resting well now (9:30 PM). She will wake up in a little while and it will take some time to get her back to sleep but then she will probably sleep late in the morning which gives me time to sleep also.  I realize I am going into a lot of detail. There is a method to this. As I have said, I can be by her side through all of this because of the confidence I have in her destiny. It is very hard to sit by a "death bed" of someone who you realize by God's Word that they are not in a "safe condition."  I am sending these e-mails to a lot of you. I ask you to stop and ask yourselves how it will be for those who love you if they need to sit by your "death bed"? That is just part of it. How hard will it be on you if your life is not "right with God" to hear the answer to your question, "Am I going to die?" from one who loves you.Will it be fair for them to give you "false hope"?  It is really hard for me to attend the funerals of people I know have not served "God" during their life and to hear a preacher stand up and give everyone "false hope" as to their destiny. Do they realize they are not changing the "destiny" of the deceased, but are misleading many who hear them?  I encourage all of us (yes, that includes me) to compare our lives to the Word of God and think about the time we may be where Miz Beth is now.  We know that many of you are praying for us and we appreciate that. It gives us strength just to know that you are out there. We do not know when nature will decide for Miz Beth to go "home" but we plan to keep her as comfortable as we can until that time. I think she has already fooled the doctor and nurses. I know that she is "tough" or she wouldn't have continued to fool them since September 15, 1996.  I will keep you all informed if my computer lets me. Either way, I hope to be with many of you and Miz Beth "over there".  Mr. Jim & Miz Beth Lamberth  In the last issue of Our Hope I included an email from Jim Lamberth that was forwarded to me. I don't know how long brother Lamberth has been sending these emails as he sat by "Miz Beth's" side, but one thing for sure, the list of friends who have received them have been greatly blessed with spiritual thoughts and a model of true lasting love between a husband and wife. I am impressed with Jim's sense of humor, positive outlook, and reaching out to the needs of others as he himself is in such need of comfort. I'm sure as he writes he is comforted in the knowledge of friends, blessings in the Lord, and the peace that passes understanding in the knowledge that the angels will carry his best friend and loving companion to everlasting peace with the Lord. I am saddened to say, I just received an email from brother Lamberth telling that his lovely Beth has gone home. I've included that email, along with two others he previously had sent out. Janelle, thank you for introducing me to this wonderful couple and, brother Lamberth, my prayers of comfort are for you and my joy is shared with you in the indescribable beauty Miz Beth is now experiencing. While I know Sister Beth is no longer physically with you, I know in your heart, it will always be "Mr. Jim and Miz Beth Lamberth."  --Pat  Date: Mon, 7 Jul 2008 17:55:28 -0500 Subject: Miz Beth "went home at 2:53 P.M. Monday, 7/07/2008 It was a very fitting occasion. We sang songs to her. I called the ones who were not here so they could talk to her on my speaker cell phone. Destin, our first grandson was holding her right hand, Shawney, his younger sister was talking to her on the speaker phone and I was holding her right hand when she left this home she had lived in since March 24, 1936, The Hospice nurse provided by VistaCare was here being sure that she was not suffering. Fortunately for all of us standing by she had a very peaceful passing. Many prayers were answered at this time. I feel sure that she does not have a vision problem any more. I kept assuring her that I would be all right. That is a commitment that I plan to keep for her. Our association with the over 100 of you who will get this e-mail has been such a blessing. I will probably send some more as time passes. I appreciate every one of you. It is now just Mr. Jim Lamberth A nice email from Jim Lamberth that had been sent previous to sister Beth's passing: July 6, 2008 The Hospice nurse encouraged me to go to worship services this morning so I did. When I returned this afternoon I saw some further "decline" in her situation. She is a "very strong lady" but it appears that her "rally abilities" are losing some ground. The "question" we all share is, "How long will it be before she departs for her "long home" (Eccl 12:5 KJV) where she will not have a vision problem or pain to suffer?" I truly believe that she will take a lot of love into Heaven with her (1Cor 13:13) because she had so much of it here on this earth. While I have tried to "stay close by" over the past three months I have been away from her to take care of some things I feel she would want me to attend to. I only hope she has never felt that I have "deserted her" except for short periods of time. I guess that is another "question" I won't know the answer to in this life. In answer to the "question" I am sure all of you want to ask, "Yes, I am still doing all right." As time passes I have to go out and "have a talk" with that pecan tree in the back corner of the yard a little more often. Me and the "tree" get along best when no one else is around. That tree, VistaCare and you people who are supporting me with your prayers and comments are doing a pretty good job "keeping me going". Of course, most important is the family members that Miz Beth and I have, surrounding us with their love, prayers and support. Then, on top of all that is Jesus Christ who came to this earth to suffer and die that we all might have "hope" of being with Him and our love ones in Heaven. I want to remind all of us that this "hope" is based on us "doing His will" while we are still alive. Again, I would remind us all that the only way we can "know His will" is to read it for ourselves, This is too important for us to depend on "hear say" or "I feel like" or "I think", etc. I had the blessing of recently talking to a person who said they "felt like" if they kept the "ten commandments" faithfully they would be all right with God. During a long discussion I think I convinced them that since they were not Jews, even if they had lived when Moses received the Ten Commandments they would not have been "subject to them". Since there is so much controversy over the Ten Commandment plaques and memorials these days I am concerned that this person is not the only one who needs to study God's word in this area. Once I thought that I had convinced this person that there was a lot more to the "Law of Moses" than just the Ten Commandments I then tried to explain that when Christ said that he did not come to "destroy the Law of Moses, but that He was the "fulfillment" of that Law. (Matt 5:17) In other words, according to what I understand, The Law of Moses was "introduced" to "protect the lineage of Jesus Christ". Once he was born, crucified and rose, it had served its purpose and was no longer needed by God. We now live under Christ's "law", the Gospel that was delivered to us by the apostles. Well, here I go again, Miz Beth is laying over there in the bed asleep and I am just setting here "pushing my thoughts through this keyboard". Remember, these are my thoughts as I understand things. If any of you feel that I am "misunderstanding" God's word, you would do me a great favor by helping me "get it straight". To quote a well known preacher in the Houston area, "If you miss Heaven, you have missed it all!" I want to "join Miz Beth" there some day. I realize we will not be there as "husband and wife" (MK 12:25) but I definitely feel we will know each other. A NOTE FROM JIM:  The email below is the one I composed on our 56th wedding anniversary on May 25, 2008. While Miz Beth is still "with us" the Hospice people think it won't be for much longer. She has gotten weaker and harder to understand when she speaks. In spite of this, she can still call "Jim" and say she loves me when I tell her I love her. We are still Mr. Jim & Miz Beth Lamberth There are probably many of you who are at a loss about wishing us a "happy 56th wedding anniversary". While some of you have acknowledged our anniversary, I can understand your concerns. I would like to put your minds at ease by mentioning that we are a member of a "minority group".Unfortunately, there are not enough couples that "stay together" any more. While this was not my "first choice" as to how we would celebrate the "anniversary day" of our 56th year, we are blessed by still being together here in our den. I realize that there are many people who are not so fortunate. I suspect that statement applies to some of you who will get this e-mail. My heart goes out to you for whatever reason you do not still have your "mate" with you. God has blessed us with these years to be together. I am so blessed by the doctor finally agreeing to let me bring Miz Beth home with me instead of us being separated at this time. She has slept most of this day and with the help of the medication we have for her she seems to be relatively comfortable. In fact she was resting so well this morning that I was able to "slip out" and work on a new fence line I am putting up. "Yes, I did have someone watching over her and yes, I do have some help with the fence", but it was good to be able to be out digging a brace post hole (by hand). I have always said it was better and more rewarding exercise than "shooting golf". Miz Beth never leaned to "cook those golfs" so I didn't learn to "shoot them". Of course, if she had known what I was doing, she would probably have fussed at me. She never has gotten over me taking us over near Pine Ridge, Arkansas on our "honeymoon" to help my best man, Smokey Lotspeach's uncle work cattle. I thought it wasn't too far from Hot Springs, Arkansas. She never did believe that Smokey "just happened to be there" and that it wasn't "planned ahead of time". So, you see, this is a "happy anniversary" because we still have each other and with the help of this computer I can share today and some wonderful memories with you all. As you can see from the time on this e-mail, it is now the day after our anniversary and we are still together here in our den. Our 56 years have rewarded us with so many things and fortunately God gave us a mind that, except for "traumatic events" it tends to remember the "good old days", especially the stories we love to share with you all. As I have said before, we really appreciate the wonderful replies so many of you have sent us. While Miz Beth cannot understand much about them I have tried to share your wonderful thoughts and comments with her. I have saved all of them in her "Miz Beth" file folder. When I have time I may try to "copy and paste" them into a "Word" document and share them with all of you. Some of the "good" that had come out of this situation is that it has given you all and us the opportunity to share our thoughts and prayers with each other. The other "good" that has come from it is the opportunity for us to share the "confidence" we have in Miz Beth's destiny. I hope this will cause all of us to seriously consider our own destiny. After all, something we probably don't like to think about very often is the fact that we are just "sojourners on this earth". Unless the Lord comes to meet us in the air first we will all some day follow the path Miz Beth is on right now. As I have said before, if any of you feel that you would like to study God's word on this subject I would love to do that. I don't think I have "all the answers" but I know the book that they can be found in. This "slow down" that my life has taken over the last two months has given me the opportunity to discuss the Lords Word with so many people. It is amazing how many different thoughts people "entertain" about God and His will for us. I am constantly reminded of what Albert Jennings said to his barber. He said that what most people believe about religion is what they have been told or observed, not what they have read for themselves out of the bible. That man took what he said to heart and changed his life and later became an elder in the church of Christ. I would hope I could have that much influence on some people. Well, as usual, I started out to write a "short note" about wishing someone in our circumstance a "happy wedding anniversary" and ended up "writing a book". I guess every book need to have a "the end" at some point so I guess a little after 2:30 AM should be a good place and time to put it. We love and appreciate all of you so much. Keep us in your prayers. I will try to keep you posted on what is going on here. Good night to all. Still Mr. Jim & Miz Beth Lamberth ~ Planning Ahead ~  Caring For Elderly Parents By Ramona Creel ASSESSING THEIR NEEDS Does your parent need help with grooming, bathing, or dressing? Does your parent need help with housekeeping, shopping, or yard work? Does your friend need help planning or preparing meals? Is your parent unable to drive or get around on public transportation alone? Does your parent need help managing finances and paying bills? Does your parent need help making legal and other important decisions? Does your parent have trouble functioning at home? Would modifications help? Does your parent have trouble with hearing, vision, or memory? GET PERMISSION financial power of attorney to make financial decisions and pay bills living will to make life-support decisions medical power of attorney to make health care decisions durable power of attorney to make legal decisions access to safe deposit box may choose to be added to deeds and mortgages may need to be added to automobile insurance know the person's wishes (medical treatments, funeral, finances, etc.) INFORMATION TO HAVE ON HAND insurance (Medicare / Medicaid number, supplement, other policies) doctors (names, phone numbers, and other contact information) medical history (medications, allergies, conditions, procedures) identification (social security, military ID, driver's license numbers) address list (friends, neighbors, family) service providers (attorney, financial advisor, clergy, accountant) financial (account numbers, checkbook, investments, tax records) legal (wills, powers of attorney, health care directive) deeds (house, other property, car title, boat title) insurance (life, medical, auto, homeowner's) household (mortgage, apartment lease, property tax records) vital records (birth certificate, marriage license, divorce decree) final wishes (organ donation, burial, property distribution) MAKE SURE THAT YOU respect your parent's independence, even while taking care of them allow your parent to make as many decisions as appropriate have reasonable expectations of what your parent can do independently talk regularly with your parent about their concerns, desires, and frustrations make informed decisions that are in the best interest of your parent's needs show compassion while you are trying to be efficient and responsible TAKING CARE OF YOURSELF recognize when you are getting worn out and need a break make use of support groups, family, and other caregivers in your situation take regular breaks to do something enjoyable for yourself  http://www.OnlineOrganizing.com (Content provided by OnlineOrganizing.com -- offering "a world of organizing solutions!" Visit www.onlineorganizing.com for organizing products, free tips, a speakers bureau, get a referral for a Professional Organizer near you, or get some help starting and running your own organizing business.) I sent in an introduction a couple of years ago.  I now have a new need for your site.  My husband, Paul, was just diagnosed with cancer.  (Multiple Myeloma)  Which section of your site deals with caring for a spouse with a debilitating disease? Thanks, Martha Hollingsworth When Your Loved One Has Cancer Knowing Your Strengths and Limits "You have to learn that if people offer, let them do something. Tell them what you need to have done, because they don't know. You have to be willing to let go of your pride and let them help you." - Lynn You may be faced with new challenges and concerns now that your loved one has advanced cancer. If the illness has been going on for a long time, these challenges may wear you down even more. Many caregivers say that, looking back, they took on too much themselves. Or they wish they had asked for help sooner in sharing tasks or seeking support. Take an honest look at what you can and can't do. What things are you good at or need to do yourself? What tasks can you give to or share with others? Be willing to let go of things that others can do. Many people probably want to help but don't know what you need or whether you want help. And as the cancer progresses, you may see changes in the support you get from others. For example: People who have helped before may not help now. Others who have helped before may want to help in new ways now. People who haven't helped before may start helping now. Agencies that couldn't help before may offer services now. Why Getting Help Is Important "I have been the main caregiver the whole time. At first, we had emotional support from the church and friends and so on, but over time they have just faded off. I have been stressed beyond belief." - Marion Many people don't want support when they need it most. You may pull back from your regular social life and people in general. You may feel that it's just too much work to ask for help. Some caregivers have said that more people helped them in the beginning. But as time went on, they felt abandoned. Accepting help from other people isn't always easy. When tough things happen, some people tend to pull away. They think, "We can handle this on our own." But things can get harder as your loved one continues to go through treatment. You may need to change your schedule and take on new tasks. Many caregivers have said, "There's just too much on my plate." They feel stretched to the point that they can't do it anymore. As simple as it sounds, it's good to remind others that you still need help. Remember that getting help for yourself can also help your loved one, as well as other friends and family. You may stay healthier. Your loved one may feel less guilty about all the things that you're doing. Some of your helpers may offer time and skills that you don't have. Having a support system is a way of taking care of your family. The idea is to remove some tasks so that you can focus on those that you can do. Talk with someone you trust, such as a friend, member of your faith community, or counselor. Other people may be able to help you sort out your thoughts and feelings. They may also be able to help you find other ways to get support. "I was taking on way too much. When I finally asked, more people than I expected were more than willing to help." - Laney Keeping a Balance with Visitors You may have many more people calling you or coming by to visit than ever before. Many caregivers say they feel very blessed when people show they care. Although you probably are very thankful for their love and support, there may be times when you need some space. It's okay if you need time to yourself or just with your family. Some things you can do are: Let your answering machine pick up the messages. Answer the phone in shifts. Take turns with family members or friends to be in charge of calls for a few hours. Put a sign on the door of your home or hospital room thanking people for coming by, but let them know your loved one is resting. Leave room for a note if they want to leave one. Have a friend in your home handle visitors while you can be in another part of your home taking care of your own needs. Go to a place where you can't be reached for a while. How Can Others Help You? Many people want to help, but they don't know what you need or how to offer help. It's okay for you to take the first step. Ask for what you need and for those things that would help you most. For instance, you may want someone to: Help with household chores, including cooking, cleaning, shopping, yard work, and childcare or eldercare. Talk and share your feelings. Drive your loved one to appointments. Pick up a child from school or activities. Pick up a prescription. Look up information you need. Be the contact person and help keep others updated on your loved one. Who Can Help? "The people that I had thought would help me weren't there. It was the ones that I really didn't expect to help that were right there saying, 'I'm here. What can I do?'" - Antoine Think about people who can help you with tasks. Besides friends and family, think of all the people and groups you and your loved one know. Some examples are neighbors, coworkers, and members of your faith community. The hospital or cancer center may be able to tell you about services they offer or give you a list of agencies to call. Social workers can also put you in touch with support services. Be Prepared for Some People to Say "No" Some people may choose not to help. This may hurt your feelings or make you angry. It's especially hard coming from those you expected to help you. You might wonder why someone wouldn't help you. There are a lot of reasons. Some common ones are: Some may be coping with their own problems. Or they may not have enough time. Some people are afraid of cancer or may have already had a bad experience with cancer. They don't want to get involved and feel that pain again. Some believe it's best to keep a distance when people are struggling. Some people may not realize how hard things are for you. Or they may not understand that you need help unless you ask for it directly. Some people feel awkward because they don't know how to show they care. If people choose not to help, you may want to explain your needs to them and be direct about what you are asking. Or you can just let it go. But if the relationship is important, you may want to tell the person how you feel. This can help prevent resentment or stress from building up. These feelings could hurt your relationship in the long run. http://www.cancer.gov/ National Cancer Institute Discussion is better than assumption. Do not assume that you know what your spouse is thinking or feeling about the cancer, or that you know what he or she needs from you. You might think your spouse is mostly scared, when actually he or she feels more sad or perhaps guilty about the consequences of the cancer for you. You might think that your spouse is strong and resilient, when actually he or she feels vulnerable and dependent on you, but may not want to show that. You might think that your spouse wants you to offer encouragement and hope, when actually he or she just wants you to say "I'm with you in what you are feeling, and we'll face this together no matter what happens." The point of this is to talk with your spouse about his or her emotional reactions and concerns....and to ask what your spouse needs from you. Some of these needs may be concrete or practical: going together to doctor's appointments, becoming educated about his or her cancer and the treatment options, handling all the phone calls from friends and relatives, taking over more household chores. Other needs may be more emotional: being attuned and responsive to what your spouse is feeling, encouraging your spouse to confide in you, offering empathy and support during difficult times. Support your spouse's true feelings. Most cancer patients feel pressure to maintain a positive mental attitude, and too often this pressure prevents them from expressing their true feelings. Your spouse might hold back in sharing legitimate fears because he or she does not want to disappoint or burden you, or because he or she thinks that negative emotions might jeopardize healing. Actually, it is the suppression of fears, sorrow, or anger that could jeopardize your spouse's psychological adjustment and immune response. Your spouse probably has good reasons to be worried and upset, but also good reasons to feel hopeful and optimistic. You should try to support and validate both sets of emotions (not only the positive ones). When Your Spouse Has Cancer/Andrew W, Kneier, Ph.D. ----------------------------------- While the following note was not written by a spouse, rather a mother, she gives important advice when caring for a terminally ill person (especially good advice if it is a male). Follow the ill loved ones lead in how to be an emotional caregiver. Some may need and want to have much discussion, others don't. We women need to realize many men don't feel the need to let their fears and sorrows out like we do. Also, we tend to believe the male patient is feeling and thinking what we are, but we all know how differently men and women think and react in normal circumstances, so the same would hold true in sickness. Also, some men express anger, rather than tears as a woman would. We need to remember not to take this anger personal. pg           My 30yr old son Glenn passed away last March, nearly six years after his first diagnosis of melanoma. For more than five years, he lived his life as he had always done and although I always knew there was a strong possibility it would return I put it to the back of my mind and followed his lead. September 2004 it returned as brain tumours and then spread. He underwent chemo and radiation with all the unpleasant side effects. I have so much admiration for him and for his wife. He preferred not to talk about it much, so we did what he wanted and carried on as normally as possible when we were together, talked of what he would do when he felt better, made plans for his little son and showed our love and support so that he would be in no doubt that we would always be there for his family.           We didn't fuss over him and make him feel like an invalid because he was a big, strong man who had always been independent. He had several really good friends, especially his younger brother, who showed their love and respect by treating him the same way as always - joking and laughing but always there when he needed strong shoulders. We are so glad that he stayed Glenn to the end and I believe he appreciated that we all waited until later to fall apart. Of course, we all did lots of grieving in private before and after.           What I am trying to say in this long ramble is - don't look too far ahead, try and make get on with your lives as best you can. You know your husband better than anyone. If possible, sort out the practical things like wills and finances just as everyone should even without illness. I know my son was easier in his mind knowing that he had provided well for his family. Other than the usual sensible things - try as much as much as possible to live your life as though cancer is not a part of it. Plan for fun things when he is feeling well and make memories just by being together.If you have a family, lean on each other and talk about everyone's feelings and just be together.           I don't know you of course, but I used to wish people would not say - don't give up hope, there is always hope. This is true in many cases but I knew because of the nature of Glenn's cancer, that there was no hope when it returned and although I would have died a thousand times if I could save my beautiful boy, I was not going to waste time pretending to myself. He knew that his wife and I were there for him always, doing whatever he needed us to do and supporting each other and just loving him. If he was the type to need us to weep and wail over him, we would have done that but because we knew him, we followed his lead and let him stay Glenn making his own decisions about his care and being able to stay in his own home.           As someone previously said, none of us know how long we have and somehow we get through it just one day at a time. Please keep in touch and know that many here understand a lot of what you feel. from an online forum at http://ths.gardenweb.com Caregiving 101 by Ruth H. Miller ---------------------- Introduction Before I even get started, I want to applaud everyone who shares time with an elderly person on a regular basis.  Whether you know it or not, you ARE making a difference to that person in their life.  Even though you may be sharing just a silly smile, a giddy laugh, giving a big hug or singing along a song . . . it doesn’t matter . . . but it is most heart warming to the receiving individual!  That person may or may not be able to tell you verbally but it is written in their eyes and on their heart.  Sadly, our society tends to forget the elderly and doesn’t “want to be bothered”.  I have decided to share some of the “episodes of life” that I have been involved with relative to my Aunt June (referred to as June from now on), for whom I have been a caregiver for over 22 years.  By way of introduction, I am a 66-year-old grandmother who raised two children, have five grandchildren in two states, do medical transcription at home, have written a couple of church hymns, written several short stories/articles/poetry and will be pursuing the publication of several books which are still in the making.  I come from a family of two brothers and two sisters, and you guessed it . . . I am a middle child with a brother and sister older than me, and a brother and sister younger than me.  While this is in no way a qualification to be a “caregiver” it sure helped me with my strength and my resolve when complicated situations reared their ugly head.  Middle children sometimes have a totally different set of issues to deal with in life, and I was no exception.  June was the youngest of four children on my mother’s side.  She lived with her sister upon the demise of her parents until her sister was diagnosed with ovarian cancer.  June had lived with me off and on for several days at a time during a period of about two years, while her sister would be an in-patient for chemotherapy treatments.  June’s sister knew she had a terminal illness and proceeded to make arrangements for June.  My older brother had always said there would be a place for June, if need be, in the future.  His family had a large historic residence and there would always be room for June.  However, as with life’s strange way of evolving paths, when June’s sister was in a downward spiral with her cancer, my older brother became too busy with his family to honor his spoken obligation to June.  My older sister was too nervous to handle June.  My younger brother was too busy with his family.  My younger sister lived out of state and she was simply out of the picture.  Papers were drawn up for June to come live with me and my family, as it seemed that no one wanted to “become involved.”  June was just as much their aunt as she was mine, but these type of responses from my family members seemed to further reflect the mode of society when situations like this arise within a family, and which show such attitudes to be a sad commentary on humanity.    I hope my upcoming articles will reflect some of the joys and sadness, laughter and tears, and ways to alleviate the tireless and endless efforts of a caregiver, when involved solely with this awesome responsibility.  1 - Meeting June June’s sister died of ovarian cancer when June was about 65 years old and she had no other immediate family members who would take care of her, as June was the baby of her family and everyone but her sister was 10-15 years older than her.  Most of her immediate family lived up north and had medical problems of their own, much less be willing to take on the responsibility of June.  As noted in the “Introduction” to this series, June was all that remained of her immediate family, and her next generation of nieces and nephews were not interested in being burdened with June, so we were the lucky ones.  I say that with a hint of sarcasm because I was living in a three bedroom house with a son and daughter at home and did not know where we would put June, but I knew June’s sister thought enough of us to want us to be her guardians, and we were going to accept that responsibility.  After all, June was another human being and deserved to be treated as one.  Let’s take a moment here to flash back in time with June: So that you will better understand June, you have to know that June has been mentally retarded since birth.  She was born left-handed, but back then, when June was in elementary school, the powers that be felt she should be trained to be right-handed and trained her thusly.  Of course, over the years it has been a proven fact that left-handed people should remain being left-handed and not forced to be otherwise.  I think this rings true with June as well.  She has dyslexia, cognitive brain syndrome, and has the mentality of an 8-year-old.  And if that is not enough, June for whatever reason, has made it her avocation throughout her life, that if you ask a question of her, she will answer it the way she thinks you want to hear it answered.  June is a phenomenon of sorts in that she can do some crafts at a 14-year-old level.    Throughout her elementary education, her teachers kept promoting her up to the eighth grade, but June was miserably failing.  Her family took her out of school and placed her in a home for nuns, as that is what June said she wanted to do, but June’s training to become a nun was just not meant to be.  She could not comprehend their levels of education and her mentality level precluded further learning which was a large stumbling block for her.  June could not keep up with the rigorous daily schedule required of a nun.  It was not long before June returned home and remained under the care of her parents.  Now back to the present: June celebrated her 65th birthday at our house.  She was there for several days as her sister had been in the hospital undergoing her last series of chemotherapy.  We had asked the other nieces and nephews to come over and share in the usual things for a small birthday celebration.  June had gone into her bedroom to get into some clean clothes before everyone came over while I was busy in the kitchen.  Everyone started to come in and I lost track of June.  The next thing I know, my brother-in-law is coming over to me and telling me I needed to check on how June was dressed . . . and now!  I immediately found June and to my surprise, she was dressed appropriately as far as clothing but she had not buttoned her shirt and seemed to have no concern about this.  I hurriedly took her into a back room and told her she needed to button her shirt because there were men and teenage children present.  I tried to explain to her that we did not go around with our clothes undone.  She looked like there was nothing amiss but did do what I asked her to do, even though she was kind of miffed about the situation and did not like me telling her what to do.   I was thinking to myself that in the future, I dare not assume she could dress herself appropriately, and probably should not expect much on a higher functional level as well.  In further talking with June about this, she said with just her and her sister at home, if they wanted to run around in their underwear and slip on, they did. I tried to explain at June’s comprehensive level, that with my children and husband living in the house now, she was going to have to learn a few “rules of the house.”  Little did I realize that this was the first of many lessons in “Caregiving 101” and the beginning of many situations of learning with June that would come up in the future. 2 - Understanding June After the incident at June’s 65th birthday party, I began to think about all the things that might come up in the future when June actually came to live with us.  I hoped I would have the compassion, patience and understanding of her ways and be able to keep her in a fairly structured lifestyle similar to what she had before coming to live with us.  However, I already knew June had a low boiling point, I knew she was very territorial, and I knew that although her sister had told me that June knew the difference from right and wrong, I had my doubts.  I knew from some of my previous exchanges with June that she had to be held on a rather tight rein or she would tend to run you over if she could get away with it.  June’s sister further told me that all of the women in her family died at 72 (which was true up to this point), so I would only have to worry with June for about another 6-7 years.  I had my doubts about that statement too, and my first reaction to this was that she knew I would have some problems with June and wanted to ease the impact a little.  One day when June was at our house visiting while the papers were being drawn up, she had gotten the idea in her mind that we would now be her mother and father and that her name would be changed to our last name.  I guessed that was her 8-year-old mentality kicking in, and especially since she knew she would be living with us permanently when her sister died.  We tried to simply explain that we would never replace her mother and father, but we would be like a second set of parents called guardians.  We would do for her as her mother and father would have done.  That seemed to settle in okay with her.  I further went on to explain that when her parents told her to do something she was supposed to do it; the same thing would hold true if we told her to do something.  She all of a sudden gave me quick snap of the head and a funny look which, at the time, I was not quite sure how to interpret.  I gathered though that she did not like the idea of being told what to do by anyone and now in retrospect, had seen this reaction before with her sister.  June’s sister died three month’s later and June moved into our home.  I still had a daughter in high school and my son had just entered the Navy, so we put June in my son’s former bedroom.  I did not know at this time what we would do when he came home on leave, but figured I would cross that bridge when I came to it.  We had several sit-down discussions with June, at her mental level, as to what she could and could not or should and should not do, now that she was living with us.  I knew it would be difficult for her to learn a “new set of rules” from those she was used to all these years living with her sister, but this had to be done from the outset.  I tried to explain to her first of all that we now had a man around the house, and that her first new thing to learn was that she must dress appropriately at all times.  I tried to explain to her that while she lived with her sister, because there were no men or teenage boys in the house, what she used to do was okay then, but this was not okay now since her living arrangements were different.  At times, it was rather difficult for me to know if she really understood this or if it just went over her head.  She would look right at you the entire time you were talking to her and you would think, wow, she is getting all of this, only to find out later that she did not retain the first thing you told her.  We did have to cover the same topics over and over for her to retain anything of significance, and she finally began to realize that she could not be as unrestricted as she was when living with her sister.  She seemed to take this in good stride and she finally showed some understanding that this was one rule she had to obey and why. 3 – Boiling Point  By now, my daughter was attending Stetson and my son was making a career of the US Navy.   My husband traveled out of state regularly and a lot of times there would just be just the two of us in the house during the week. While I had seen June in an aggravated state several times prior to her moving in with us, this one incident scared even me!    I had to do the most “loved” chore by the majority of us women . . . buy groceries for the week!  While June used to go with me, this time she wanted to stay at home watching something on TV.  I knew I could leave her by herself for several hours without a problem, so I told her that was fine and I left June watching her program.  She would always come outside when she heard me drive up and would always help me get the groceries inside, which was actually one of her “chores.”    When I returned home, I was surprised to have to take the first load of grocery bags in without the first sign of June.   I called her from the kitchen so she would hear me and told her I was home and would she come out of her room and help bring in the groceries.  She did not respond.  I went out and got some more grocery bags and brought them in, and here comes June slowly walking toward the garage door.  She was in no mood to help me with groceries and I could see her attitude as it was displayed across her face quite well.  I told her I almost had them all in, but she could go out and get the other two bags.  She shuffled slowly but she did bring them in, but not without her standard glare which was enough to put you six feet under!  I felt it best not to say anything to her except “thank you” when she brought in the remaining two bags and put them on the counter top.  I thought she went back into her room and I hurried to put up the rest of the groceries.    I had bought some toilet paper for her bathroom and was on the way to put it in her bathroom cabinet.  When I got to the door, it was closed, and I could hear June mumbling and grumbling about something behind the door.  The more she spoke, the higher the pitch was in her voice and her volume level was rising as well.  I just stood by the door and listened for a minute; I was not only shocked at what I heard, but more concerned about the level of hatred which I felt rolling off each word.  I don’t know what she had said before I was listening but she was plainly saying now, “She will be sorry for this and she is not going to get away with it.  I will see to it.  I know where things are and I will take care of this.”  Then she went on mumbling something I could not interpret.  I went back into the kitchen just a little on the concerned side about her level of aggravation and specifically what she meant by “She is not going to get away with this.”     A few minutes later, I heard her open the bathroom door and go into her bedroom.  I went in and asked her what on earth was she so grumbly and upset about?  She jerked her head back at me in her usual style and just stared at me, as if to say, “What do you know or care about what I have said?”  (When June is behind a closed door fuming, she thinks no matter how loud she gets no one can hear her.)   I told her that I needed to be able to understand what had upset her so.  She blurted out that I had interrupted her program and that I should not have done that to her.  She went on to say that program was important to her (it was a cartoon) and that she was not being treated “as a guest” by having to do chores.  She said she did not like doing work and I could not make her do anything.   I let her vent a little longer thinking it would help her to get it off her chest.  I then asked her what gave her the idea she was a guest at my house?  She mumbled something unintelligible to me ...  so I went on and told her she was a part of our family and she was not a guest.  I asked her if she knew the meaning of the word “guest’ and she just gave me her blank stare which also told me she had picked up this word from someone else and really did not know what it meant, but it sounded good to her to use it.  I told her “guests” only stayed for a short period of time.  Was she planning to stay for a short period of time with us? And if so, where was she planning on going after that?  That caught her attention.  Then she began to back down a little realizing that I might expect her to leave and go elsewhere after explaining the term “guest.”  I went on to tell her that everyone that lives in this house has a certain amount of chores to do and she was just as much a part of this family as anyone else.  I explained that while my chores were different than hers and that I had a lot more chores than she did, she still had a certain amount of responsibility to keep up her list of chores.   I further explained that this is how homes were run . . . everyone had their share to do in keeping the house clean.  Now her chores are these . . . help me bring in groceries, make her bed in the morning, keep her room clean, keep table napkins in the napkin holder, keep paper towels on the rack and empty her bedroom trash can.  I told her that we have never given her anything to do that she could not do well, and these were her specific chores to do as part of the team of others living in the house.  She appeared to understand what I had said to her and by now had calmed down to a low simmer.  I left her to think about this and went out to prepare supper.  While I was preparing supper, I got a call from my sister who lives about a block or two away.  I had related the little incident with June earlier and she said, “Well you know how boiling mad she gets if she does not get her way,” and of course, I agreed with this.  We finished our conversation and June and I ate supper.  I was putting the dishes in the dishwasher when the phone rang again.  It was my sister calling back.  She said she had been talking with her husband about June’s earlier incident, and they both agreed that when just the two of us were home alone at night, that I should lock my door when I went to bed.  I asked, “Why?” She said, “Because of the fact that June does get so hot-tempered so easily, plus she knows where all the kitchen knives are and if she got mad enough, she would not hesitate to act out her hate on you.”  My sister went on to say, “But this time, it appears she got so mad so fast for nothing of significance and her thoughts seemed to be more on the evil side than normal.”   I had not given this scenario any thought in that direction and when I did, I realized my sister was right to a degree.  However, I felt that June had been given a down-to-her-level explanation and that she needed to just calm down for the rest of the evening and “get over it” so to speak.    It was then I remembered something that was told me by a lady who runs an adult day care center that June had attended at one time.  After June started going there during the day, while I worked my full-time job, the administrator said to me, “Ruth, June lives in her own little world and her own little world has no rules in it unless June makes up the rules.  Not only that, she leans toward the malevolent side of thinking when she is angry and she boils fast.  You need to know this.”  I had not given that much thought either at the time, but I sure did now.  I did not speak to June further about this, but I did take my cell phone in the bedroom with me and I did lock my door for the next week when Leon was out of town. 4 – New Glasses   In June’s particular situation, you have to understand that she is very, very influenced by what people say.  Sometimes I think she has very little reasoning of her own.  For instance, there was the time when everyone at the ALF (assisted living facility) where she now lives was going for their annual eye checks and getting new glasses.  Of course, June was not to be out done.  She promptly sat on her glasses so it would be made known to me that she needed new glasses too, as hers were now bent out of shape.  I took her to the local Wal-Mart optical center and within 15 minutes, they were as good as new and she could wear them without any problem.  But this came with a resultant grotesque twisting of her face and under-the-breath, surly words saying “I want NEW glasses, not FIXED glasses,” because she wanted to be just like everyone else.  The next day she started to complain that she could not see, her vision was all blurry, and her glasses did not fit her well . . . they hurt her nose now.  I knew what was going on as did the nurses at her ALF.  As down to her level as I could, I explained that getting new glasses might not be as good as she thought, and I went on to tell her further that this would mean her eyes were getting worse and not better.  I told her she should be very pleased that she did not have to get new glasses, as that meant her eyes were not getting worse, and for all the others who got new glasses, that meant their eyes were probably getting worse.  This did not seem to phase her and I sill heard grumblings and mumblings about how everyone was getting new glasses but her.  I don’t think she ever really listened to what I had said to her about her eyes as she was so focused on new glasses!  We all went through this “new glasses needed” phase for about two months.  June continued to complain of everything she could come up with for new glasses, and June could create some great stories as to why too!  I had scheduled her for her normal checkup and she could not wait for that day to arrive.  She was positive she needed new glasses.  I picked her up and she was as perky as could be.  Her doctor checked her pressures and they were fine. Her peripheral vision test was good.  However, woe to the world when she started reading the lines on the chart . . .  she read everything absolutely backwards.  June is a conniver to the ultimate when she needs to be and she must have felt the need at this appointment.  The nurse that was testing her said, “I don’t know what is going on here.”  I pulled the nurse outside and told her I knew what was going on but that she was not going to believe me . . . and then I explained June to her.  We both came back into the room where June was sitting.  And the nurse was really super . . . she came back in and before doing any further testing, she plainly told June that if she could not read the charts correctly, they could not know what kind of lens to make for her new glasses so that she could see better.  Bingo!  June could all of a sudden read the numbers and letters like she could before but this time they were order!  We did manage to get through this and then went into another room for a few minutes before the doctor actually arrived.  He sat down and studied her chart and results and turned around and said, “She is very stable.”  I don’t think June understood “stable”, so I said to him, “So we are normal . . . we are okay.”  June gave me her standard “six-foot under” look but didn’t say anything.  The doctor then handed me a prescription for her glasses and said that there was a slight change which was really a very minimal change if we wanted to get her new lenses.  June jerked her head around and saw him hand me the prescription and had a grin on her face that was two miles wide!  The doctor and I walked outside while June was putting her glasses back on and picking up her purse, and he told me  that even though she had a minimal change that could be made, she would be much better to stay with her current lenses so she could read better.   A little light went on in my brain at that moment and I knew right then what I was going to do.    We finished with her appointment and I made sure she saw the new prescription in my hands as we walked down the hall.  We went straight to the optical department.  I had June sit out in the waiting room and I told her I had to talk with the optician and see if we could get her glasses today.  I went in and explained the situation to them and asked them if they had some new frames that these lenses would fit in, that we could get done today.  We got June in to the optical department and they brought her three or four new frames and she picked out the one she wanted.  I asked them again, and where June could hear me, if we could get these done today to save June having to come back and they assured me we could.  In about 20 minutes, June had her same glasses’ lens in brand new frames and she was tickled pink.  When we got her back to the ALF, the first thing she said to the staff there was that she had new glasses and now she could see the letters so much bigger and better!  I didn’t say anything but went into the administrator’s office and related to her this scenario and that, yes, June had new frames, but NOT new glasses.  We both just laughed because she knew what I had done.  But, June was a happy camper, so we let her do her thing.  When you can find a simple solution for a long drawn-out problem, it kind of makes you feel good inside too, and I knew they would not have any eye problems with June now for some time to come. A Caregiver's Heart What's inside of a caregiver's heart? Just for a moment, let's pick it apart. I want to find out what makes it tick. Why does one take care of the sick? Here's the scalpel, let's take a look. For this we'll need no anatomy book. What's this I see? A stain I fear, From many a tear over many a year. This scar here is a fracture line, One we hid when we said we're fine. That deep mark there, it shows the pain, From being accused of looking for gain. There! Look there! See all that sorrow? It's for the loved one who's lost tomorrow. How can it function? How can it cope? Surely by now it should lose all hope. What is this glue that makes it strong? Battered and bruised, it still goes on. What keeps this heart from falling apart? Love binds together A Caregiver's Heart. © 1999, Jerry Ham used with permission

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