Care Giving for Mesothelioma Sufferers
by: Evan Langsted
If you are a caregiver for someone with mesothelioma, you already know, or are learning quickly, how drastically your routines must change. Fortunately, there are seemingly endless sources of support for you as the caregiver, as well as for your loved one with this diagnosis.
Start with an Internet search to learn about mesothelioma (the disease, causes, treatments, care giving, support, options–everything you can find) and print out as much as you can. You won’t be able to remember it all. Make a file and organize it into categories so that you can easily find what you need when you need to know it. Then devise a plan to investigate each aspect of your care giving in an orderly manner. If you jump around from topic to topic, you’ll surely get confused, forget things and become overwhelmed. Make notes and file them with your topics.
Also, be aware that there are many sites that offer unreliable or biased information, so consider your sources carefully. One place to start might be the American Cancer Society where you can learn many facts about malignant mesothelioma and what you and your loved one will be dealing with. This will help you in giving support and caring for emotional and physical needs. As you meet with the medical team members, they can help you devise a care plan that includes caring for your own needs, as well.
You will need to find out what resources are available to you in your area, and which are covered by insurance, which by volunteers, which by support groups or local services. Meal delivery services for seniors and the disabled is one such service that could relieve you of meal preparation at least once a day. Remember that you will not only be taking care of both of your needs, but may have to carry out many requests to make your patient more comfortable. Requests such as bringing something to drink or snack on, something to read or do, change a TV channel and other small adjustments might begin to overwhelm you. Let your patient do as much for himself as possible.
Some of the things you’ll have to learn that are specific to your role as caregiver include:
• How to coordinate your care plan with your patient’s medical team’s plans. Decide who will take the patient to his or her appointments. List all questions ahead of time and make sure you are satisfied with the answers. Report all symptoms
• The specific type and location of mesothelioma your patient has and how it will affect him or her. This includes stages and treatments associated with different stages, and other options, such as clinical trials, and how each of these will affect both of you physically, emotionally, spiritually, socially and financially.
• Nutrition for mesothelioma patients. Your team will probably include a nutritionist who can advise you both of dietary needs at different stages of treatment, and ways to streamline meal preparation and shopping to reduce your work.
• Medications and supplements
• How to assist with activities of daily living, such as bathing, hygiene, dressing, mobilizing, changing a bed with someone in it, and especially assisting someone who is weak or in pain.
• Emotional support and understanding the emotions a patient and caregivers will experience. These can include frustration, anger, depression, hopelessness, euphoria, annoyance, exasperation, denial and many more that you are not accustomed to dealing with at this new level. Learn how to listen, don’t contradict or judge, and never disagree with your patient’s description of his or her emotions. Emotions are neither right nor wrong–they just are, and if your patient is feeling any particular emotion, that is the fact, though you might wish it were not. If your loved one is not ready to talk, wait until they are. They are losing control of almost everything in their life. Allow them to control what they need to express.
• Caring for your patient after treatment, which could be surgery, chemotherapy or radiation therapy, fluid drainage, or other less imposing treatments. Each type of treatment will require specific types of care.
• Caring for yourself is as important to your patient as it is to you, so include yourself in the care plan. If you burn out or injure yourself, your loved one has lost his or her primary caretaker. Know your limitations and seek help where you might otherwise push yourself.
Rest will be one of your greatest needs. Are respite services available in your area? These services provide people to cover for you for a day or two while you physically leave and take respite somewhere else.
Maintain your routines, hobbies, interests, social life, outside activities as much as possible.
Your loved one is not the only one suffering emotional pain. You will be, as well. Caring for another person 24 hours a day, seven days a week would wear anyone out. If you have someone who can relieve you one or two days a week, take advantage of the opportunity to refresh yourself.
Ignore those who are critical of your caretaking unless you and your patient agree that a change would be an improvement. If the two of you are satisfied, and your caretaking is going well, realize that there is just so much you can do. If others insist that more can be done, and you and the patient are open to this, suggest that they provide the missing care as you would welcome all the help you can get.
• Delegation and available support. List individuals and groups. What can they best offer in the way of help or assistance? Can you rely on them for regular help? Do you have alternate sources of help? Get them to commit to a schedule and to specific ways of helping so that you can plan and organize. If you have family, friends, or volunteer organizations, or if your patient qualifies for in-home care services, you can delegate many of your tasks. These can be anything from running errands, to light housekeeping, meal preparation, bathing and other assistance with personal hygiene (for the patient, not you.) You might delegate bill paying, shopping, laundry, or any number of duties that would free up your time and energy for caretaking.
• Are everyone’s affairs in order, including yours? Advance directives. Wills. Bills. Taxes. Licenses. Important papers. Important contact information. Does a trusted person know where these papers are?
• What if something happens to you? Do you have a backup plan to care for your patient? Does a reliable person know of your plan, and are they ready to carry it out, if necessary?
• Legal matters. You will want to seek counsel from an attorney with experience in mesothelioma cases. If you are eligible for compensation, you will have to file for this within time limits set by statutes of limitations. If you are entitled to compensation, this will provide financial assistance for medical bills, caregivers and other expenses, as well as other losses, such as income and more.
If you are a caregiver for someone with mesothelioma, you already know, or are learning quickly, how drastically your routines must change. Fortunately, there are seemingly endless sources of support for you as the caregiver, as well as for your loved one with this diagnosis.
Start with an Internet search to learn about mesothelioma (the disease, causes, treatments, care giving, support, options–everything you can find) and print out as much as you can. You won’t be able to remember it all. Make a file and organize it into categories so that you can easily find what you need when you need to know it. Then devise a plan to investigate each aspect of your care giving in an orderly manner. If you jump around from topic to topic, you’ll surely get confused, forget things and become overwhelmed. Make notes and file them with your topics.
Also, be aware that there are many sites that offer unreliable or biased information, so consider your sources carefully. One place to start might be the American Cancer Society where you can learn many facts about malignant mesothelioma and what you and your loved one will be dealing with. This will help you in giving support and caring for emotional and physical needs. As you meet with the medical team members, they can help you devise a care plan that includes caring for your own needs, as well.
You will need to find out what resources are available to you in your area, and which are covered by insurance, which by volunteers, which by support groups or local services. Meal delivery services for seniors and the disabled is one such service that could relieve you of meal preparation at least once a day. Remember that you will not only be taking care of both of your needs, but may have to carry out many requests to make your patient more comfortable. Requests such as bringing something to drink or snack on, something to read or do, change a TV channel and other small adjustments might begin to overwhelm you. Let your patient do as much for himself as possible.
Some of the things you’ll have to learn that are specific to your role as caregiver include:
• How to coordinate your care plan with your patient’s medical team’s plans. Decide who will take the patient to his or her appointments. List all questions ahead of time and make sure you are satisfied with the answers. Report all symptoms
• The specific type and location of mesothelioma your patient has and how it will affect him or her. This includes stages and treatments associated with different stages, and other options, such as clinical trials, and how each of these will affect both of you physically, emotionally, spiritually, socially and financially.
• Nutrition for mesothelioma patients. Your team will probably include a nutritionist who can advise you both of dietary needs at different stages of treatment, and ways to streamline meal preparation and shopping to reduce your work.
• Medications and supplements
• How to assist with activities of daily living, such as bathing, hygiene, dressing, mobilizing, changing a bed with someone in it, and especially assisting someone who is weak or in pain.
• Emotional support and understanding the emotions a patient and caregivers will experience. These can include frustration, anger, depression, hopelessness, euphoria, annoyance, exasperation, denial and many more that you are not accustomed to dealing with at this new level. Learn how to listen, don’t contradict or judge, and never disagree with your patient’s description of his or her emotions. Emotions are neither right nor wrong–they just are, and if your patient is feeling any particular emotion, that is the fact, though you might wish it were not. If your loved one is not ready to talk, wait until they are. They are losing control of almost everything in their life. Allow them to control what they need to express.
• Caring for your patient after treatment, which could be surgery, chemotherapy or radiation therapy, fluid drainage, or other less imposing treatments. Each type of treatment will require specific types of care.
• Caring for yourself is as important to your patient as it is to you, so include yourself in the care plan. If you burn out or injure yourself, your loved one has lost his or her primary caretaker. Know your limitations and seek help where you might otherwise push yourself.
Rest will be one of your greatest needs. Are respite services available in your area? These services provide people to cover for you for a day or two while you physically leave and take respite somewhere else.
Maintain your routines, hobbies, interests, social life, outside activities as much as possible.
Your loved one is not the only one suffering emotional pain. You will be, as well. Caring for another person 24 hours a day, seven days a week would wear anyone out. If you have someone who can relieve you one or two days a week, take advantage of the opportunity to refresh yourself.
Ignore those who are critical of your caretaking unless you and your patient agree that a change would be an improvement. If the two of you are satisfied, and your caretaking is going well, realize that there is just so much you can do. If others insist that more can be done, and you and the patient are open to this, suggest that they provide the missing care as you would welcome all the help you can get.
• Delegation and available support. List individuals and groups. What can they best offer in the way of help or assistance? Can you rely on them for regular help? Do you have alternate sources of help? Get them to commit to a schedule and to specific ways of helping so that you can plan and organize. If you have family, friends, or volunteer organizations, or if your patient qualifies for in-home care services, you can delegate many of your tasks. These can be anything from running errands, to light housekeeping, meal preparation, bathing and other assistance with personal hygiene (for the patient, not you.) You might delegate bill paying, shopping, laundry, or any number of duties that would free up your time and energy for caretaking.
• Are everyone’s affairs in order, including yours? Advance directives. Wills. Bills. Taxes. Licenses. Important papers. Important contact information. Does a trusted person know where these papers are?
• What if something happens to you? Do you have a backup plan to care for your patient? Does a reliable person know of your plan, and are they ready to carry it out, if necessary?
• Legal matters. You will want to seek counsel from an attorney with experience in mesothelioma cases. If you are eligible for compensation, you will have to file for this within time limits set by statutes of limitations. If you are entitled to compensation, this will provide financial assistance for medical bills, caregivers and other expenses, as well as other losses, such as income and more.
