Acknowledgements - Xenos Christian Fellowship



JourneyIntoEnd of Life CaregivingMardessa J. BakerContents TOC \o "1-3" \h \z \u Acknowledgements PAGEREF _Toc6859387 \h 3Note To Caregivers PAGEREF _Toc6859388 \h 3Assuming the Role PAGEREF _Toc6859389 \h 3Assuming the role of caregiver PAGEREF _Toc6859390 \h 3Caregiving Transformation PAGEREF _Toc6859391 \h 4Let caregiving transform you PAGEREF _Toc6859392 \h 4Educate Yourself PAGEREF _Toc6859393 \h 5When To Call In Hospice PAGEREF _Toc6859394 \h 6Caregiving in a Facility PAGEREF _Toc6859395 \h 6Communication is Essential PAGEREF _Toc6859396 \h 7Communication With Your Loved One PAGEREF _Toc6859397 \h 8A Calming Presence PAGEREF _Toc6859398 \h 9A calming presence comes from within PAGEREF _Toc6859399 \h 9Let Others Care For You PAGEREF _Toc6859400 \h 10Your Experience PAGEREF _Toc6859401 \h 12Taking Care Of Mother PAGEREF _Toc6859402 \h 12Honor Your Loved One PAGEREF _Toc6859403 \h 15Misconceptions PAGEREF _Toc6859404 \h 16Resources PAGEREF _Toc6859405 \h 21Passages in Caregiving: Turning Chaos into Confidence PAGEREF _Toc6859406 \h 22Caregiving Without Regrets: 3 Steps to Avoid Burnout and Manage Disappointment, Guilt, and Anger PAGEREF _Toc6859407 \h 22Dr. Vicki Rackner PAGEREF _Toc6859408 \h 22Merk Engage Online resource PAGEREF _Toc6859409 \h 22 PAGEREF _Toc6859410 \h 22Acknowledgements I would like to send a big thank you to Acclaim Hospice and Palliative Care, as they have empowered me to think outside the box and explore ways of meeting people’s needs, going “above and beyond” to ease someone else’s burdens. I would also like to thank our hardworking intern, Sarah, for her input and technical skills and Elizabeth Baker for her additional insight and editing abilities and David my go-to IT guy. Most of all, I send a very special thank you to my mother whose journey with Dementia has brought me to a whole new level of caring and love. One of my favorite sayings I keep on the visor of my car is “I’m not telling you it’s going to be easy, I’m telling you it’s going to be worth it.” I cannot imagine loving someone more than I do my mother, right now, in the midst of this ruthless disease. Being her caregiver, I am honored to be with her on this journey. Every family is different and comes with their own world view, ideas of caring, abilities, skills and family histories. I wish I could cover every complication and help every family resolve their issues to make care giving a smooth transition, but I can’t. This booklet will cover some of the most important issues of caring for yourself while caring for your loved one. Note To CaregiversAs the caregiver, we receive the ultimate gift. We share with the dying, a bond and an intimacy that no other two people can share. We can live knowing that we lessened someone’s pain on the inside, where it counts, and we made sure that they would not walk alone.I believe the dying is given insight that we do not have. They somehow know when it is time to go and they know what we can and can’t handle. That is the gift that we, caregivers receive. We get a preview and understanding of the end of life that we would otherwise never see. Thank you for assuming this role.Rev. Mardessa J. BakerBereavement Coordinator and Fellow in the American Academyof Grief CounselorsAssuming the RoleAssuming the role of caregiver “Nothing is impossible. The word itself says: I’m possible.”So you’re a caregiver…. You may have stepped up to this role willingly, or it may have fallen to you because no one else could fulfill the needs that have to be met. Either way, there are many challenges and rewards that come with being a caregiver. The biggest challenge caregiver’s face is “burnout.” Burnout is the experience of emotional and physical exhaustion and reduced self-care, accompanied by unrelenting responsibility which possibly results in low self esteem and depression. The gist is: As much as you love the person, you run out of energy under the responsibility of your caregiving. You feel like a candle that is being burned at both ends. This booklet is intended to help you identify and deal with issues that might cause you to burn out. It is our hope that this booklet will equip you for the journey of caregiving. Every situation is different, but with some resourcefulness and patience these tips will help you provide the best care to your loved one with the least stress to yourself. Caregiving Transformation Let caregiving transform youThe reason that your stress is sometimes referred to as caregiver “burden” is because it might feel as if you are shouldering the entire weight of your loved one’s illness. It is heavy and the way is often long. Taking it all one step at a time, one day at a time, sometimes even moment by moment is the best you can do.Getting the “news” that your loved one has a terminal disease comes with a tremendous amount of loss attached that often goes unnoticed. Let’s consider some of these losses:Loved OneLoss of familiar surroundingsLoss of financesLoss of abilitiesLoss of autonomyLoss of motor skillsLoss of mental capacityLoss of body functionsLoss of prideLoss of friendsLoss of predictabilityLoss of identityLoss of visibilityLoss of hopeLoss of interestLoss of purposeCaregiverLoss of freedomLoss of social activityLoss of controlLoss of financesLoss of sleepLoss of wellbeingLoss of friendsLoss of hopeLoss of routineLoss of choiceLoss of normalcyLoss of familiar routinesLoss of privacyLoss of spontaneityLoss of selfYou are facing new thoughts and emotions, new roles with much uncertainty, and also helping your loved one handle new thoughts and emotions, as well as end of life tasks. It’s a daunting task for one person to handle. Acknowledge your fears and apprehensions, share them with others. Find a close friend or relative with whom you can confide. Try to choose someone who will listen without judging or trying to fix the situation. “Note to self:RELAX.”As a caregiver, your priorities will change. Things that used to be very important will temporarily fall by the wayside, and things that didn’t matter before will take on a whole new meaning. For example, you may be accustomed to an immaculate home, but as your loved one declines in health, more equipment may need to be brought in, and clutter or dust may become more obvious to you. That’s ok, your time and energy are being spent giving care. Give yourself permission to let some things go during this process. Temporary change is normal. This is your life right now, it won’t last forever. Don’t waste your valuable energy worrying about what people think. Educate Yourself Your best weapon against the unknown is knowledge. Every person is unique, with that in mind; learn about your loved one’s diagnosis and other medical conditions. Knowledge will make it less scary and possibly more predictable and you will eventually become prepared to handle the situations that come up. Use your resources to educate yourself about the disease and things you can do for your loved one as they decline. Please don’t be afraid to ask for help from your family, church or community. They may become a valuable lifeline.There is a world of information on the internet, in libraries, and among medical professionals. Make a connection to disease specific support groups; they tend to be a wealth of information and support to you as well as your loved one. Again, remember, each person is unique and comes with their own set of conditions. The resource list at the end of this booklet is a good place to start. As you educate yourself, don’t believe everything you read or hear, be mindful of what sources you use. Never stop asking questions.What are the options for treatment?What are the options if we choose not to treat?What should I look for in the progression of the disease? What should we expect next? What are the medications that can be used? What resources are available for support? What is the life expectancy?When To Call In Hospice “You are braver than you believe, and stronger than you seem, and smarter than you think.”-Winnie the PoohWhat happens when the medical field has exhausted their resources and/or your loved one or you have decided that quality of life is more important than quantity of life? When do you call in Hospice? Hospice is a wonderful choice when aggressive treatment is no longer an option. While having these difficult discussions with the medical community, your doctor may recommend hospice, but don’t be afraid to approach them with this option. If your doctor agrees that hospice is a good option and your loved one meets the Medicare hospice criteria, you have the option of choosing what hospice you would like to assist in the care of your loved one. This is truly a win-win situation for both your loved one and you. Hospice comes to wherever the patient calls home whether it is in a facility, assisted living or a person’s home. They have a team of professionals: doctors, nurses, chaplains, social workers, aides and a host of other highly trained people to help meet your needs. The added benefit to having hospice is they meet the needs of the patient but are an integral part of helping you, the caregiver, with educational, emotional, spiritual and of course grief support that continues after the death of your loved one. Hospice treats the whole family. With different levels of care depending on the patient’s needs, hospice develops a plan of care that provides comfort for the patient and caring compassion for the caregiver and family. Hospice is available to assist with patient’s needs 24 hours a day, 7 days a week. Caregiving in a Facility If your loved one is in a facility, you must educate yourself about the facility. Take the time to read the facility’s last Medicare survey. These surveys point out past compliance issues and how they were resolved. Get to know the facility’s weaknesses but also build up the people who provide good care. Know the people on all shifts. Although being on a schedule offers a sense of security to your loved one, it is vitally important to “show up” at odd times. Observe how care is given to them at mealtime, shower time, bedtime, when they are asleep, and when they are awake. Enlist others to visit them when you can’t. Be an active participant in their care. If you observe something that raises a red flag in your mind, speak up. Always follow your gut feeling. Remember, you are your loved one’s voice and advocate. When you visit, take note of their skin. Document bruising, reddened areas, reoccurring illnesses, and skin break down. If these things are ongoing issues insist on a meeting with the nurses, the director of nursing, the social worker, and administrator, include activities staff and dietary staff if needed. Make your needs and expectations known as often as you feel necessary. Though care is not given primarily by you, keep your expectations high. You can easily become physically and emotionally burned out when caring for a loved one in a facility. The need to take a break and care for you is still munication is EssentialDoctors, nurses, community and family are invaluable resources right now. Advocate for your loved one to these people to make sure that your loved one’s needs and yours are being met. Don’t be afraid to let your voice be heard. Often, you are the voice of your loved one. Who knows them better than you? Enlist help from anyone, no matter how small the request.It is very easy to feel as if you are shouldering the burden of care all by yourself, and you might be. Instead of “bottling” your frustrations, take this as an opportunity to involve family and friends. Some people will step up to help you, others won’t. You have no control over their decisions and priorities. If you focus on this, it will only cause you frustration and anger, so try to focus your attention on the people who are able to help. You may catch yourself saying “Oh no, I will do that.” You may try to do everything yourself. Stop yourself in those moments and accept the help being offered. You will find out very quickly that utilizing others blesses them and gives you a much needed break. Forming this habit may take practice, be patient and accept help.If you’re not receiving adequate help or people aren’t offering it anymore, ask them, and be specific:Make a shopping list and have it ready when someone offers to help.Ask someone to pick up or prepare a meal for you and your loved one, or do your dishes.Give someone a check to take to the bank for you.Ask someone to sit with your loved one while you run errands or take a walk.Let someone cut your grass, shovel the snow or water the flowers.Allow someone the opportunity to visit your loved one while you take a shower or walk the dog.These are just a few ways that you can make others feel helpful and give yourself a break. Try to come up with more ideas that fit into your lifestyle. Don’t forget to let people know how much you appreciate their help. You may need to explain to some people that sometimes the help you need may not be direct care of your loved one, but any task they take from you is relieving you and allowing for greater quality of care all around. There is no task too small when it comes to helping munication With Your Loved OneYou have an endless list of tasks to do and sometimes your ability to communicate well suffers because you just have too much going on. But your loved one needs continued communication with you as a calming presence in their lives. Multi-tasking communicates to them that other things are more important to you. Get on their level. If they are wheelchair bound, sit when you speak to them and look them in the eyes. Eye contact is a valuable and affirming interaction that your loved one needs especially as their disease progresses and their ability to think and communicate becomes more difficult. Your loved one is keenly aware of your tone of voice and body language. So, if you are tired, frustrated, anxious, angry, impatient, fearful, hurried… (you get the idea) be honest with your loved one about your emotions, don’t try to hide them. However, you still need a healthy outlet for your feelings. Find a friend you can confide in who will not judge you or give you advice.You probably feel a lot of sensitivity about showing your emotions around the person you love. The process of grieving doesn’t begin at the moment of death. Grief may begin the moment you realize that life as you knew it has changed, whether it is a sudden change or a slow process. Maybe the doctor just gave you the “news” and now your grief is in full swing. Know that the closer you are to the person the stronger the grief. It is okay to grieve openly. Be sensitive to your loved one, but it is good for them to see you grieve as they are grieving also. This may open up an opportunity for some rich discussion, making memories, sharing stories, laughter and healing. This is very valuable for the both of you, a precious time. “If you think my hands are full, you should see my heart…you have no idea.” “Some people care too much…I think it’s called LOVE.”-Winnie the PoohDon’t let it slip away because you fear showing your emotions. Chances are the one you love is more aware of what’s happening to them than you are. If they are able to communicate, talk to them openly about death. This gives them permission to discuss their fears and hopes without fear that you will judge them. This is an opportunity to get close to them and share meaningful moments. The “elephant” is in the room. Say what needs to be said in a loving, compassionate and sometimes humorous way.Maintain a sense of humor. This is good for you and those around you. Don’t take everything personally and don’t let your stress build up. Keep your own spirits high and it will reflect onto your loved one. Your care recipient may be increasingly irritable or difficult; they may have always been difficult. If you know this, make up your mind to be positive in tough situations. This is easier said than done. Staying positive is not the same as hiding your emotions, communicating in an honest and loving way may open doors of healing that have been shut for years or a lifetime. How do you balance all the end of life tasks of caring and communicating while still trying to maintain that calming presence? The answer is to take good care of you.A Calming PresenceA calming presence comes from within Diet, exercise, sleep; these words are over used, and with good reason! As a caregiver, you can not provide the best care for your loved one if you are not caring for yourself. Take time to eat enjoyable, healthy meals that recharge your soul as well as your body. Stretch your leg’s, stretch your body and get good sleep. A well-rested and calm caregiver does their job better then a caffeine-laced, hungry, tired and frazzled one. These self-care tasks can be done when a family member or friend is sitting with your loved one, or your loved one is sleeping. You can consider investments like a baby monitor that will enable you to leave the room or an emergency response pendant for them in case they fall when unattended. Every person has unique needs. Contact your local senior center or your local Area Agency on Aging to learn what technological and social resources are available to you. It might take a few tries and experiments, but etching out that time for yourself will make you a better caregiver, and will make you feel better. “You know that awesome feeling when you get into bed, fall right asleep, and wake up refreshed?…Me neither.”Taking breaks? This sounds impossible, but it isn’t. A break doesn’t have to be long. A caregiving break is anything that allows you to step away from your loved one and take a moment for YOU. Whether it’s a five minute break to read a page or two from a book, half an hour to catch the headlines on the news or one minute to go outside and water your garden, short breaks to focus on yourself will reduce the likelihood of burnout. Everyone will feel rejuvenated by different things, discover yours. Sometimes a break can be as simple as stepping into another room to pray or focus on slow breathing (in for five seconds, out for five seconds….)Set goals and give yourself rewards. Your goal can be to walk three times a week, to finish a book this month or to learn a new recipe, whatever it is, be realistic. Set yourself up for success, not failure. You probably can’t walk for an hour every day, but half an hour three times a week is possible. Once you achieve a goal, reward yourself! Remember, different people feel refreshed by different things. A reward might be as small as stopping at a favorite bakery to get yourself a dessert, or as big as a trip to the lake for you and a loved one. Be realistic and decide what rewards will be most meaningful for you.Finding time to exercise may seem impossible, but you don’t have to rush out and buy a gym membership (although, if you want to, go ahead), you can start by making little changes to your day. Take the stairs instead of the elevator whenever possible. Walk or bicycle to nearby destinations instead of taking the car. After loading bags into your car at the grocery store, walk the cart back to the store. When you drive places, park a couple of blocks from your destination and walk the rest of the way. The key is finding small ways to incorporate physical activity into your day. Research shows it may help you sleep better, and it can increase energy and alertness. This will make you feel better, and will make you a better caregiver.Sometimes it’s hard to be gentle with yourself. If you do not succeed the first time, it’s okay. Your personal goals are just for you and they do not reflect on who you are as a person. Many caregivers experience depression because of the continuous demands on their time and energy. Feeling like you’re not doing enough becomes common. Constantly remind yourself “I’m doing the best I can and that’s enough!” because it is enough. Laugh! The best gift you can give yourself and your loved one is the gift of laughter. Try to see humor in the ordinary and absurdities of each day.Let Others Care For YouIt is common for caregivers to neglect themselves in order to provide “better” care for their loved one. You begin by skipping a meal here and there. Going out with family or friends becomes less frequent, and before you know it, you can’t remember the last time you had a moment to yourself. Caregivers often believe that taking time away from their loved one to care for themselves is selfish. This is absolutely not true. But where do you find the time to keep up on doctor appointments, get your medicines refilled and eat foods that come from a garden and not from a convenience store? When do you sleep, or even step outside to take some big deep breaths? You find the time by asking others to help you. Clearly express your limits to those involved in the care of your loved one. Let close family members, doctors, aides and friends know how they can help. Be specific about what you can and can’t do. To an outsider, “I can’t cook for her all the time!” is not as helpful as “I don’t have the time to cook her dinners on Tuesdays and Fridays.” If you are specific about your limitations others will find specific ways to help you. In this example, a family member will know that they are needed two days a week to cook and will be more able to offer you help. When your limits conflict with someone else’s expectations offer them options of different ways to help, but stay within your reasonable limits. Don’t take on every task yourself. For instance, if someone can’t go grocery shopping for you every week, instead of giving up and doing it all yourself, ask them if they would sit with your loved one on occasion while you go shopping or offer another task they are able to take off your plate.The best way to get help with caregiving is by clearly and specifically stating your needs to those around you. “Sometimes your greatest accomplishment is getting the laundry from the washer to the dryer before the mildew sets in.”Avoid blaming others. When we become overwhelmed we start to feel like everyone else has abandoned us. Everybody promises to help and support, but they may not follow through. Your feelings of abandonment are probably valid; you need to confide your concerns in a trusted friend instead of holding on to them. When dealing with family, a blanket statement such as “You never come to visit him or help out.” only serves to start an argument. Avoid statements beginning with “you” or containing “always” and “never.” These statements will drive away those who might offer a helping hand. Instead, use “I” statements to express how you feel. For example; “I need help to finish the household chores this week. Will you do a few things for me?” or “I am feeling really closed in, I need a couple hours away. Can you sit with Dad on Saturday for a couple hours?” Remember to be specific and realistic. Learn to use statements that avoid an accusatory tone and begin with; I think… or I feel…or I need…. You are not a mind-reader and neither are they. It is hard to do absolutely everything for your loved one, but you definitely have a big impact in the quality of their life.Talk to them about the things that are important and meaningful to them. As much as you need breaks from caregiving, your loved one needs a break from you sometimes. You are doing your best to give them everything. You become so close and so emotionally involved (because you love them!) that you lose touch with the big picture. For example; it’s easy to replace your role as caregiver with a “parenting” role. When caring for our own parent who is in decline, we might think it’s our turn to parent them. Be patient with your loved one and be patient with yourself. While these thoughts start from good intentions and love, sometimes they do more harm then good. “Courage does not always roar. Sometimes it’s the quiet voice at the end of the day that says ‘I will try again tomorrow”You may see their decline and find that they are acting more and more like a child. Caregiving does not mean disciplining, teaching or regulating your loved one. It does mean respect. Be aware of cognitive decline and care for them accordingly, but recognize that their decisions, opinions and emotions are still their own. They are an adult. Don’t always assume you know what’s best for them although safety is extremely important and it is ultimately up to you to keep them as safe as possible. Be specific and clear in expressing yourself to others, especially your loved one. Good communication is affirming to those your loved one and makes your life a little easier. Include them in as many decisions as possible, this shows respect for them as a person even if you are the Power of Attorney and have the final say.Your ExperienceYour experience as a caregiverThe “new normal” you are facing is very different from the life you’ve lived up to this point. You can not continue to do things the way you did before. Plans and expectations will have to be flexible. Learning to “roll with the punches” is one of the most challenging and rewarding aspects of caregiving. This new role challenges you to be a positive influence. It is an opportunity to gain:personal satisfactionpersonal growthimproved relationship with a loved oneimproved sense of spiritualitynew knowledge of a diseasenew knowledge of how to care for others“I’m not telling you it’s going to be easy, I’m telling you it’s going to be worth it.”Taking Care Of MotherAs you begin caregiving, take the time to read this story of one caregiver’s journey with her precious mother.Liz’s story: TAKING CARE OF MOTHEROne of the hardest jobs one can do for a family member is to be a caregiver during the last years of their life. My mother came to live with me while she could still drive and was in fairly good health. After eight years, she was starting to do some questionable things while home alone. The doctor said she had dementia coming on and things would get worse, not better. As I had over thirty years of teaching, I could retire and so I did. Being at home most of the time helped, but within a year, I realize that Mother needed 24/7 hour care. She still made good sense most of the time, but on occasion she would forget something on the stove, or let the water run in her bathroom. I decided to become her caregiver. Being a caregiver is not easy, especially if you cannot get time off each week. Once or twice a year, my sister or brother would have Mother come and stay with them, but that truly was not enough. I cared for her during the day, and with the help of a monitor, I responded when I heard her get up in the night or call for me. I learned to sleep in two or three hour segments. The last two years of Mom's life, I no longer let her go for visits away from the house as she felt disoriented and unhappy and wanted to stay at “home.” So she did and so did I. I had to learn to sit, which was hard for me as I was a very active person. There is only so much housecleaning one can do inside, so I set up my computer in the family room where my mother sat most days and I worked on genealogy online. It helped. I also learned what it meant to be a servant in the truest sense of the word. Everything you do and say, is done with the other person in mind. I learned how to not react to times of frustration, but to patiently persist and encourage. If Mother's health had any chemical imbalance, her personality changed and she became more difficult. After having her trust and confidence in me for over 56 years, I experienced her distrust and attacks on my motives and character. Still I loved her through those times when I felt torn apart inside. I am thankful it lasted only for a season and only once. When Mother dropped thirty pounds over a few months, and her appetite started to decrease, we learned through the doctor that blood tests indicated her kidneys were starting to fail. She qualified for hospice, and upon my agreement with her, that I would not push her to eat, she agreed to hospice. It meant we didn't have to make trips into the doctor's office or clinic for check-ups and tests and drag her wheelchair around. She would have everything done at home. That held tremendous appeal for her. A nurse checked her twice a week and anything she needed done, even x-rays were done at home. By this time I had to help her shower, wash her hair, dress, etc. As it became more and more difficult for me to bathe her, an aide came once a week to help her shower. It was a great help to me. A transfer chair, plastic gloves, medicines and other care needs were provided without cost to us. And when the time came, a hospital bed was delivered along with an oxygen tank and a person to teach us how to use them. Medicines that Mother was taking were adjusted and several dropped. Mother was pleased with that. She was always kept comfortable and necessary medicines were kept. A chaplain came once a week and kept us updated on everything going on with Mother. She also talked with me about the feelings and experiences I was having, providing me with support and the assurance that the change I saw in Mother was common as someone declines. For six months, hospice became routine in our lives. Then Mother's appetite took a drastic drop. She was not interested in food. She was not hungry. She continued to lose weight. My sister thought I was not trying to fix the foods Mother liked, so she fixed three of her favorites and came to spend a few hours with her. Mother was so delighted with what she did, but after one bite, said she wasn't hungry and did not eat any more. The last month of her life, Mother would look at me as though I was a stranger. She told me how nice and kind I was and sweet, and she couldn't understand why I would take such good care of her. I knew when she said please and/or thank you to me, that she didn't recognize me.Again, hospice told me it was quite common towards the end of life, that a person does not always recognize the one or ones closest to them. In my family, it was me as she knew everyone else. One night she looked hard at me and asked if she knew me. I told her yes. She paused and then asked if we were related and again I responded in the affirmative. After a longer pause, she whispered, “I suppose you are my daughter.” I said yes, and still she looked at me as if she didn't believe me. I was thankful for the times she did know me. By this point, she was in bed most of the time. One day she asked if she could get up and get dressed. Even though it had been months since she had last dressed for the day, we dressed her and I fixed her hair. She came out to the family room and sat in her chair. Her youngest grandson happened to come to visit and spent hours talking with her. It was like we had backtracked four months to healthier times. After he left and she had been up for about six hours, she asked to go back to bed. She never got out of bed after that. My mother never had much of a sense of humor. Mother never “got” the joke and she could never laugh at herself or tell jokes. But the last week of her life, she joked and laughed at herself. It was delightful to see her be so light hearted. The last day I knew she would soon depart this life and I called her nurse. I could not even get her to accept the ice chips I had been feeding her around the clock the last few weeks. She simply got weaker and weaker, more and more quiet, with breathing taking all of her energy. Hospice was there, but they allowed me, my brother and sister, to spend the last hours with Mother and as she drew her last breath. It was so peaceful. Hospice said it was a “textbook” case of someone who simply becomes old and slips away. My sister and I gave our mother her last bath. The local funeral director came in response to our call in the middle of the night, and was so understanding and allowed us time to talk with each other, with him and say good-bye to her. One of the last requests my mother made of me was not to sorrow for her. I had given her five years of my life, she told me that I was to go and do the things I should have been doing in those five years. Those five years were not a loss, but a lesson. One I am glad to have experienced and shared with Mother. The EndEmbrace the unexpected “gifts” of caregiving. Let your caregiving be a journey. You will be on a journey that will test you and teach you. You can take something good away from every situation. Let the journey transform you and at the end of it all you will be able to see how much you have gained in wisdom and perseverance.Honor Your Loved One “Advice from a tree:stand tall and proud,go out on a limb,remember your roots,drink plenty of water,be content with your natural beauty,enjoy the view.”Recognize that they are on their own journey. This journey will take them into the physical, the emotional, the spiritual, and the unfamiliar. There will be ups and downs as you watch your loved one change. Some transformations will be very hard to watch, such as the changes that come with Dementia or Parkinson’s. Other transformations will be beautiful, such as watching them embrace their spirituality or religion, or watching them reconcile broken relationships. Your loved one is probably just as concerned about these changes as you. The greatest gift you can give them is to honor their journey, be a witness to it and accept their decisions and changes without judgment. Experience the power of love with them. “People don’t always need advice. Sometimes all they really need is a hand to hold, an ear to listen, and a heart to understand them.”As a caregiver, you talk to many people about your loved one. Family, friends, doctors, ministers and acquaintances all have opinions and expectations about your caregiving, whether you ask for them or not. You may even feel like you say their name more than you say your own. These people may offer their advice out of kindness, and sometimes their words are comforting. Other times, however, these people are sources of stress either intentionally or unintentionally. The following is a list of common misconceptions these people, or you yourself, may have about caregiving. Holding these misconceptions may cause you to have stress, burnout, depression, and pain. However, if you are aware of these falsehoods then you will be able to turn them down when you encounter them. Misconceptions“I know how you feel.” Regardless of the intentions of the person who is speaking to you, your emotions, thoughts and experiences are completely unique and completely your own. They are valid. No one can decide if your feelings are okay so do not let them. Your feelings are neither right nor wrong, they are yours. You give your gifts and talents to your loved one day in and day out. Feel secure in your role. “Caring for them is easy as long as you love them enough.” The amount of love you have for the person you care for is not measured by how much you do for them or how easy you make it look. Loving someone does not endow you with the skills, knowledge, and resources that caregiving demands. Being a good caregiver sometimes means allowing yourself the grace to be imperfect. If you are not able to effortlessly manage all your loved one’s needs as well as your own, that does not mean that you love them less. It means you are human. Let me reiterate the role you have as caregiver one of the hardest things you will ever do: Let’s be aware of some facts:Approximately 29% of the U.S. adult populations are caregivers. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 201243.5 million caregivers are giving care to those 50 years old or older. [Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 201214.9 million care for people with Dementia or Alzheimer’s.[Alzheimer's Association, 2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia , Vol.7, Issue 2.] - Updated: November 2012The average duration of the caregiving role is 4.6 years. 15% provided care for over 10 years.[The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C.] - Updated: November 201217% of caregivers report that their general health has gotten worse.[AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving] - Updated: November 2012.Caregivers for those with Alzheimer’s or Dementia reported an impact to their immune system up to three years after the end of their caregiving role. This impact to immunity increases the likelihood of developing chronic illness. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S: National Alliance for Caregiving. Washington, D.C.] - Updated: November 201240-70% of caregivers have clinically significant symptoms of depression.[Zarit, S. (2006) Assessment of Family Caregivers: A Research Perspective in Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12-37). San Francisco: Family Caregiver Alliance.] - Updated: November 2012Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves. Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One.National Alliance for Caregiving and Evercare. 2006.]Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life.[Elissa S. Epel, Dept of Psychiatry, Univ of Calif, SF, et al, From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101,] “Asking people to help you care for your loved one is selfish or weak.” “You never know how strong you are until being strong is the only choice you have.”This myth, like the one before it, places an unreasonable expectation on the caregiver. As a caregiver you are still a human being with emotions, needs and weaknesses. Reaching out to others in this time of gain and loss is natural. In fact, it’s a sign of your strength and resolve to be there for your loved one. It often takes a team to care for someone in decline. You are not a one-man army.“You’re doing it wrong.” “To love a person is to learn the song in their heart, and sing it to them when they have forgotten.”-Thomas ChandlerThis myth assumes that every decision you make has a right and wrong answer. As a caregiver you know this is not true. You spend your days sorting through your roles and tasks and the answers are not always clear. Should you try the experimental treatment or will it just drag out their pain? Is it okay to let them enjoy their favorite dessert or should you keep them on a strict no-sugar diet? Should you be more worried about getting the laundry done or reading a book to them? There are an endless number of tough decisions you make as a caregiver, and there is no manual. It’s okay to not know all the answers, because usually there is no one, right answer.“Keep life normal for your loved one.” “Remind yourself that it’s okay not to be perfect.”Many people you encounter will not understand that you are maneuvering a “new normal.” They may expect you to maintain a life style that your loved one is used to, but this might not be possible or beneficial given the diagnosis. Your loved one may not be able to eat the same foods, do the same activities or even live in the same place they always have. As a caregiver, it is not your job to provide them with the old normal, it is your job to help your loved one experience the new normal and live to the fullest with their diagnosis.“At least you can always depend on your family.” “Behind every caregiver is a substantial amount of coffee.”Don’t assume that every family member will be willing or able to help. There are geographic, financial and emotional barriers to caregiving and some family members may not rush to your aid. If family doesn’t rush to your aid, this does not reflect on you as a person. There may be something you don’t know about that is going on with them. Many family members continue to work at their job and raise a family. As a caregiver, you need to know what things you can change and what you can’t. Don’t worry about unhelpful family members. Focus on working with what you have. “You shouldn’t display your emotions in front of your loved one. It’ll only upset them.”Why not? You are, after all, a human being. It is not wrong to cry, laugh or express emotions in front of your loved one. An emotionless caregiver is not a better caregiver. Your loved one may want to cry or laugh with you. They might feel less alone if they see that you are feeling these things right along with them. You need to take care of you, and that means emotionally. Having a good cry with your loved one may bring you closer, or refresh you so you can go on caring for them. No matter what, you need to embrace your emotions and acknowledge them. “The doctor knows best.”Not necessarily, you know best. You are the one who spends every day caring for your loved one. The doctor sees them for an half an hour at a time, if that. You have valuable observations to share with the doctor about your loved one that will help them develop the best plan of care. Be confident in what you know. If you disagree with the doctor, speak up! They are human too, and they may be educated, but they are not perfect. Tell them what you know, and don’t be afraid to take a little more of their time. You are your loved one’s advocate. You devote so much of your time caring for them, that if taking a little more of the doctor’s time will help your loved one, do it. “You should just be glad they’re still with you.”Grief does not begin at death. Grieving begins when you experience a loss. This can mean the loss of health or ability and you can grieve this loss on behalf of another. As a caregiver you sacrifice a great deal for your loved one. Grief is a natural response to this sacrifice and their loss. Grief is not a sign that you love the person less and it is not a sign of weakness. Embrace grief and see what you and your loved one discover.“You’re not a caregiver if your loved one is in a facility.” “Caring is being there in whatever capacity is possible.”Absolutely false! You have put your loved one in the hands of strangers for whatever reason. Now more than ever they need your love and support. You are their voice and their connection to all that used to be normal. Their fears of being left or abandoned are monumental, and caregiver guilt goes through the roof. Your visits are a very important part of their care, and your involvement will ensure they are receiving the best treatment. Do not assume that your loved one’s needs are being met just because they live in a facility. Make your expectations known. Get to know the director of nursing and administration. All of this is hard work. It is emotionally draining and exhausting, but it’s a must if your goal is quality of life for your loved one. Remember to keep a sense of humor. They may need you to remind them how to smile.As we have seen, care giving is a journey riddled with transitions, adjustments, and learning. It is up to you to learn the things you can change, and accept the things you can not. If you embrace your role as a caregiver there are many rewards ahead. The most meaningful thing you can ever do for yourself and your loved one is to honor the journey you are on together.Since this writing, my mother has passed away. I will always cherish the journey we had together. Understanding her disease process and what was happening to her brain and body was a turning point in my understanding of why she did the things she did. I learned to laugh at things she would laugh at, and cry with her when she cried for her “mommy” or beg to go home with me. This was particularly heart wrenching. I learned to be vigilant over bowels moving and urination smells, stuffiness in her nose and unusual coughs. Her skin was fragile so I was alert to bruises and marks on her body, how she acted in showers, and how she reacted to doctors visiting especially the dentist and podiatrist. I read her emotions good and bad when someone entered her room. I learned to cut her hair when she could no longer go out, and provided good home cooked meals for her on the weekends when staffing seemed low. Whatever brought her pleasure I would try to provide. Yes, she could put down a quart of ice cream without batting an eye. This was a regular treat. My real joy came when I learned to surrender my agenda, my demands, and my expectations and allow myself to join her on her very unique journey. We would dance to and from the bathroom with me singing a poor rendition of Frank Sinatra’s “I Won’t Dance, Don’t Ask Me.” She had a terrible fear of falling, but holding her in my arms to dance we could easily maneuver that 12 steps back to bed. If mother was having a difficult day, dancing, holding her hand, stroking her hair, and affirming to her that she was the best mother ever seemed to calm her. Other nurses and aides picked up on our routine and would join in likewise. I knew when she pulled “all-nighters” because her nightgowns would be stained with various sorts of food that the nurses and aides would share with her as she sat and ate with them throughout the night. Yes, there were many frustrations but the utter joy she brought me was immeasurable. I couldn’t wait to see her every day. Even when she no longer knew me as her daughter and would often refer and introduce me as her mother, I would simply follow her lead, putting away my reality and joining in hers. When all recognition ended I learned to just “be there” offering all I could from my heart. Learning to let go is hard, caregiving is hard and extremely demanding in every facet of your life. Discovering what works takes creativity, perseverance and so much love. But in the end…the memories and blessings are worth it…Remember…”I’m not telling you it’s going to be easy, I’m telling you it’s going to be worth it.”“How lucky I am to have something that makes saying goodbye o hard.”-Winnie the PoohResourcesUse this list of resources to start your search for knowledge. Find these books at the library and flip through them, or spend a few minutes clicking through the websites. Some of these tools will be very helpful to you, others will not. Use them to find more resources and continue to educate yourself. The enclosed quotes used in the text came from the website Pinterest, under the title, Caregiving.The Caregiver Help Book;Powerful Tools For caregivingBy Vicki L. Schmall, Marilyn Cleland, and Marilynn SturdevantThis book is an honest and comprehensive guide for caregivers. It is full of tips and tools to help you manage care and manage caregiving stress. is a non-profit resource committed to helping people face health challenges.Eldercare Locator Locator is an online tool to help you locate services and resources close to home. National Alliance for CaregivingThe National Alliance for Caregiving was founded to advocate and provide resources to caregivers.Area Agencies on Aging your local Area Agency on Aging. It’s their job to direct you to the resources you and your loved one need. online resource helps you locate online support groups for specific needs. You can search specific diseases like COPD or Alzheimer’s, or life events such as Caregiving or Grief. Understanding your grief; ten essential touchstones for finding hope and healing in your heartAlan D. Wolfet, Ph.DThis book is a resource for individuals who are grieving the loss or potential loss of a loved one. Love, loss, and laughter; seeing Alzheimer’s differentlyCathy Greenblat, PhDA collection of photographs and commentaries; this book builds a portrait of Alzheimer’s patients that shows the world they are still human, still loved, and still capable of joy. is an online space where you can connect, share news, and receive support. It’s your very own health social network, coming together on your personalized website.Passages in Caregiving: Turning Chaos into Confidence Gail Sheehy Sheehy offers an empathetic, well-researched guide to an unfamiliar, often scary role, outlining eight stages of caregiving from "Shock and Mobilization" to "The Long Good-Bye."Caregiving Without Regrets: 3 Steps to Avoid Burnout and Manage Disappointment, Guilt, and Anger Dr. Vicki RacknerRackner teaches readers how to throw out the caregiving rule book and mold your caregiving to your unique circumstances. You don't have to be a perfect caregiver, just be perfectly you.Merk Engage Online resource MerkEngage is a collection of online resources to help caregivers organize and implement caregiving tasks. The site provides resources such as meal plans, schedules, and tips for caregivers and care recipients.VA caregiver support It can be an incredibly demanding job taking care of a Veteran. Learn more about the support and services VA offers to Family Caregivers on this website.COPD Foundation The mission of the COPD Foundation is to develop and support programs which improve the quality of life through research, education, early diagnosis, and enhanced therapy for persons whose lives are impacted by Chronic Obstructive Pulmonary Disease. Alzheimer’s Association The Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.The American Parkinson Disease Association, Inc. "Keys to Caregiving" Educational Supplement. APDA provides a free, downloadable educational supplement titled “Keys to Caregiving”Cancer Support Community Cancer Support Community offers a menu of personalized services and education for all people affected by cancer.Everyday Health : Protect Yourself as an HIV Caregiver This article teaches caregivers of people with HIV/AIDS the dos and don’ts of protecting themselves while providing care.AIDS info This is a list of articles that may be helpful to caregivers of people with HIV/ of Care Net of care provides caregivers with disease specific resources and guidesHospice Hospice provides support for patients and families facing end of life decisions. This website has a section for caregivers. ................
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