Esclerose Lateral Amiotrófica (ELA)

Um filme ... outro: http://www.themanwholearnedtofall.com/film.html

Ajudar cuidadores

Help for Being a Caregiver Absolutely the easiest thing for someone to say and the hardest thing to accept is the concept of taking care of yourself as a caregiver. It is often hard to see beyond the care tasks that await you each morning. Here are some areas to consider to help you cope as a caregiver. Education - Learn as much as you can about the illness so that you can understand what is happening. Attend a support group, not just for emotional support but also to learn caregiving tricks to make caregiving easier. You can't know it all; this is a job you weren't trained to do. Support - Support and coping comes in many forms: prayer, talking to family, friends or professionals, saying "yes" to offers of help, taking walks, reading a book, eating hot fudge sundaes. But most caregivers end up withdrawing from friends and family and feeling isolated and like no one understands. Support groups can be an important source of understanding and connection. Attending caregiving classes or workshops can also help you to get the understanding you need. Setting limits - Learn to ask for help. The oft heard statement, "Let me know if there is anything you need," has but one answer—"Yes, I need a meal, I need someone to stay here so I can go out, I need some time by myself, I need flowers, I need help in the garden, I need some groceries." Learn to say "no" to requests that are draining rather than nurturing, such as hosting holiday meals. You can still make choices about your life and what is right for you and you do still have some control. Your Body - It's easier said than done. We all know we need to eat right, exercise and get eight hours of sleep. Not getting enough sleep is a major cause of illness and stress in caregivers. Exhaustion is one of the main complaints, leading to irritability and then inappropriate anger which then leads to more guilt. Talk with your physician about sleep problems, if you are having them, and ask for help if your loved one is having trouble sleeping through the night. Know the limits of your own endurance and strength. Make sure you have regular check ups and that those "little concerns" about your health are looked into. Exercise is even more important as it gives you a break, combats depression and helps you maintain health. One common fear of caregivers is the worry about what will happen to their loved one if something happens to them. Taking care of your body is your best defense. Emotional Health - It is easy to become overwhelmed, thus the need for breaks. One caregiver related that she deals so much better with her husband when he has been at day care, because when he comes home, she is not already frustrated by him. Without breaks, you begin to question yourself, feel inadequate and experience burn out. Caregivers are often mourning the loss of the person "who used to be." Grief and loss needs to be acknowledged. Taking care of yourself may mean dealing with family issues, as caregiving brings one back to family, albeit in a new way. Guilt - Guilt that "I should" do this or be able to do it, guilt that your loved one won't get as good care if you aren't doing it, guilt that something will happen if you are away, guilt about having a good time when someone else is not. Just like in raising a child, there is no such thing as a "perfect" caregiver. And you are not selfish to sometimes think about yourself and your needs and feelings. Although caregivers feel guilty when they get angry or frustrated, feelings are ok and a sign of how you are coping. "How can I say it is difficult when I really love my wife," one husband said. Respite - One caregiver said, "I'm tired of being told to 'take care of myself.'" But without finding ways to do that, it is easy to become overwhelmed. Respite breaks might be lunch with a friend, catching an afternoon movie, or a walk around the block. It is whatever will nourish you and help you to feel refreshed when returning to your caregiving duties. http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2551#lead1

Apoio para formação de cuidadores

A Associação ADVITA - Associação para o Desenvolvimento de Novas Iniciativas para a Vida desenvolveu um conjunto de ferramentas, reconhecidas pela DGS, que servem de apoio a quem está a formar cuidadores. Consultem o site: https://www.advita.pt/

Casa Segura

Para descontrair

Carta de Direitos do Cuidador

1. Eu tenho o direito ... a cuidar de mim. Não é um acto de egoísmo. Vai-me dar a capacidade de cuidar melhor o meu familiar.

2. Eu tenho o direito... a procurar ajuda de outros mesmo se os meus familiares não aprovarem. Eu reconheço os limites da minha própria resistência e força.

http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2551#lead2

Uma ajuda

"Help for Being a Caregiver Absolutely the easiest thing for someone to say and the hardest thing to accept is the concept of taking care of yourself as a caregiver. It is often hard to see beyond the care tasks that await you each morning. Here are some areas to consider to help you cope as a caregiver. Education - Learn as much as you can about the illness so that you can understand what is happening. Attend a support group, not just for emotional support but also to learn caregiving tricks to make caregiving easier. You can't know it all; this is a job you weren't trained to do. Support - Support and coping comes in many forms: prayer, talking to family, friends or professionals, saying "yes" to offers of help, taking walks, reading a book, eating hot fudge sundaes. But most caregivers end up withdrawing from friends and family and feeling isolated and like no one understands. Support groups can be an important source of understanding and connection. Attending caregiving classes or workshops can also help you to get the understanding you need. Setting limits - Learn to ask for help. The oft heard statement, "Let me know if there is anything you need," has but one answer—"Yes, I need a meal, I need someone to stay here so I can go out, I need some time by myself, I need flowers, I need help in the garden, I need some groceries." Learn to say "no" to requests that are draining rather than nurturing, such as hosting holiday meals. You can still make choices about your life and what is right for you and you do still have some control. Your Body - It's easier said than done. We all know we need to eat right, exercise and get eight hours of sleep. Not getting enough sleep is a major cause of illness and stress in caregivers. Exhaustion is one of the main complaints, leading to irritability and then inappropriate anger which then leads to more guilt. Talk with your physician about sleep problems, if you are having them, and ask for help if your loved one is having trouble sleeping through the night. Know the limits of your own endurance and strength. Make sure you have regular check ups and that those "little concerns" about your health are looked into. Exercise is even more important as it gives you a break, combats depression and helps you maintain health. One common fear of caregivers is the worry about what will happen to their loved one if something happens to them. Taking care of your body is your best defense. Emotional Health - It is easy to become overwhelmed, thus the need for breaks. One caregiver related that she deals so much better with her husband when he has been at day care, because when he comes home, she is not already frustrated by him. Without breaks, you begin to question yourself, feel inadequate and experience burn out. Caregivers are often mourning the loss of the person "who used to be." Grief and loss needs to be acknowledged. Taking care of yourself may mean dealing with family issues, as caregiving brings one back to family, albeit in a new way. Guilt - Guilt that "I should" do this or be able to do it, guilt that your loved one won't get as good care if you aren't doing it, guilt that something will happen if you are away, guilt about having a good time when someone else is not. Just like in raising a child, there is no such thing as a "perfect" caregiver. And you are not selfish to sometimes think about yourself and your needs and feelings. Although caregivers feel guilty when they get angry or frustrated, feelings are ok and a sign of how you are coping. "How can I say it is difficult when I really love my wife," one husband said. Respite - One caregiver said, "I'm tired of being told to 'take care of myself.'" But without finding ways to do that, it is easy to become overwhelmed. Respite breaks might be lunch with a friend, catching an afternoon movie, or a walk around the block. It is whatever will nourish you and help you to feel refreshed when returning to your caregiving duties."
http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2551#lead2