The Practical Caregiver’s Guide to Basic Care: How to Help Someone You Love
By Sara M. Barton, The Practical Caregiver
Published by Sara M. Barton, The Practical Caregiver, at Smashwords
Copyright Sara M. Barton 2011
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you are reading this book and did not purchase it, or it was not purchased for your use only, please return to Smashwords and purchase your own copy. Thank you for respecting the hard work of this author.
What are The Practical Caregiver Guides? They are educational guides to help you be a better family caregiver. When you are providing basic care, you need the right tools to help you get the job done. My goal as the Practical Caregiver is to help you provide better care to your loved one, without losing yourself in the process. There are three important rules for good family care:
-- Love is never enough. You can love someone utterly and completely, but without the right tools and education, you can fail as a caregiver.
-- You have to take care of yourself in order to be able to take care of your loved one. If you fail, there will be two people who need a caregiver -- you and your loved one!
-- What you don't know or understand can hurt you AND your loved one -- when you learn about what ails your loved one, you can also learn about what will make care better.
Believe in yourself. Believe that for every problem there is at least one solution. Believe in family care -- there's no place like home. Direct your caregiving to meet your loved one's real needs. The rewards can be great.
Love really does make the world go around, but if you want a smoother ride, grease the wheels!
HOME CARE ESSENTIALS
What kind of caregiver are you? What kind of caregiver do you want to be? Did you volunteer or did you get the job as the result of the family needing you? Do you feel like you have choices in your role or do you feel trapped?
A practical caregiver is an educated caregiver. An educated caregiver is a better caregiver. Why? When you understand the role of caregiver and learn how to improve the care you give, you focus your attention on success. A cooperative effort to plan the care with your loved one means less resistance from your loved one and less work for you. Keep your loved one as independent and active as possible.
PRACTICAL CAREGIVER SKILLS:
-- Organize your caregiving
-- Realize the human factor
-- Recognize the impact of dependency
-- Minimize the weaknesses
-- Maximize the strengths
-- Utilize resources and strengths
CAREGIVER TIP – ASSIST, DON’T DIRECT
A practical caregiver never takes charge of the loved one, the disease or disorder, or the decisions, unless the loved one is non compos mentis. Always engage your loved one in the process of caregiving if you want cooperation.
CREATE YOUR CAREGIVER COMMAND CENTER
In order to focus your caregiving, you will need to create your Caregiver Command Center. This is where you organize and store all things related to the care you provide. It’s sometimes tempting to get rid of receipts, appointment calendars, and other information that seems unnecessary to keep. You might be surprised to learn it can be helpful to have this information handy. Medical situations may develop slowly over time. Being able to provide the physician with details of the dates, medications used to treat the symptoms, and other relevant information can sometimes aid in the diagnosis of undetected illness.
PHYSICAL RECORDS KEEPING
You need one central location to keep all of the printed information on your loved one’s medical, financial, insurance, and personal issues that you will be handling. Use a file folder, file box, or file cabinet for this and keep it in one location. In an emergency, when you need to grab important papers to take with you to the hospital, you don’t want to waste time and energy looking for it. As time goes on, especially if your loved one’s health deteriorates, this becomes the official record of what occurs, and you will need to be able to access the information. Sometimes unexpected situations occur down the road – being able to review dates or procedures can be helpful.
ELECTRONIC RECORDS KEEPING
You may also want to create an electronic file on your computer for important information. (You may choose to take advantage of some of the many programs and apps available to caregivers that help them get medications organized. The costs vary for these, as do the features.) It’s also helpful to have a calendar of your loved one’s appointments, so you can coordinate your own busy schedule with that of your loved one.
CAREGIVER TIP – START (OR RESTART) YOURSELF OFF ON THE RIGHT FOOT
Take the time to set up your command center. Down the road, if your loved one’s need for care grows, you will have less time to organize. Once you have this set up in a way that works for you, you can begin to tweak it to fit the needs of both you and your loved one.
ORGANIZING BASIC MEDICAL CARE
The first thing any caregiver benefits from is to review the loved one’s health situation. Assess the needs of your loved one, so that you can begin to develop strategies to help your loved one get the best medical care available.
MEDICATIONS – You are the official pharmacy assistant.
Make a list of all medications your loved one is currently taking, the name of the physician who prescribed each one, as well as the dosage. Also list all vitamins, supplements, and minerals, as well as all Over-The-Counter (OTC) medications. These include allergy relief, antacids, and even pain relievers. These can interfere with certain medications and cause serious health problems. You will need this information every time your loved one goes for a medical appointment. It’s important that each doctor knows what the other doctors are doing for your loved one. Be sure to read the printed information for each drug. Many side effects are missed by patients and caregivers, and that can cause discomfort for your loved one. Sometimes medications need to be altered or changed.
MEDICAL HISTORY – You are the official medical coordinator.
Make a list of every physician your loved one sees and the contact information for each office. It’s often helpful to add these phone numbers to your cell phone directory. In an emergency, it’s easier to push a button and be instantly connected than to have to search for a name and phone number. If the physicians offer a medical records tracking program, consider using this. It’s often a USB stick that downloads current medical records from that physician’s office and it allows other physicians treating your loved one to see what is going on. This is a handy tool if you need to rush your loved one to the emergency room. Other helpful information includes the dates and laboratories performing diagnostic tests, such as most recent x-rays, CAT and PET scans, and blood tests.
IDENTIFICATION AND INSURANCES – You are the official chief information officer.
Make a copy of your loved one’s insurance information and driver’s license to keep in your wallet. In an emergency, this can be important. Encourage your loved one to keep the insurance cards in a specific location in his or her wallet. Make sure your loved one is prepared for medical appointments and treatments. Many scheduled tests require that you bring paperwork with you. Some tests require your loved one to prepare ahead of time. Be sure you understand all instructions, including any regarding fasting, taking required dyes, and medications. If you have questions, always call the laboratory or physician’s office to double-check.
Many families have more than one member assisting with care issues. You may have someone who handles all of the financial issues in care, including insurance payments and co-pays. You should always coordinate with the person handling financial issues, but if you are the one taking your loved one to medical appointments, you need this information in your possession.
NUTRITION AND DIET – You are the official nutrition coordinator.
Make a list of all nutritional information that is important for your loved one. Are there medications that should not be taken with certain foods? Is it necessary for your loved one to gain weight, lose weight, or maintain weight? Has the doctor recommended the use of nutritional supplements or a specific diet? It’s important to understand your loved one’s dietary needs, especially if his or her illness has resulted in weight loss or diabetes. Many patients using steroids often develop diabetes after long-term use. This is often addressed by careful dietary management.
CAREGIVER TIP -- DON’T BECOME THE FOOD POLICE!
Please note – food can be an issue that creates power struggles between patient and caregiver if it’s not properly addressed. Most patients are cooperative when they understand they are a part of their own treatment plan. Always seek nutritional advice from medical professionals, dietitians, and nutritionists on how best to help your loved one.
ORGANIZING HOME LIFE STRUCTURE
If you are new to the caregiving situation, it’s important for you not only to understand your loved one’s needs for care, but the benefits of having a caregiver structure. When you know your loved one’s interests in life, the activities he or she enjoys, as well as his or her schedules and routines, you can direct your care towards maintaining your loved one’s personal strengths while minimizing weaknesses created by the illness or disorder. A happy loved one is busy enjoying quality of life despite the obstacles. Know what activities are important to him or her, and find ways to enable your loved one to continue to get out to shop, to socialize, and to pursue hobbies and passions. The worst thing in the world that a well-meaning caregiver can do is to rein in a loved one in an effort to make less work for everyone. You don’t want your loved one stuck alone at home, miserable and depressed. Every human being needs to feel that life is worth living, even if that means making more of an effort.
CAREGIVER TIP – ORGANIZED CARE IS SMART CARE
When you organize the care you will give, you save yourself time, money and energy. It enables you to plan and strategize what you will do and how you will do it.
NEEDS – You are the official care assistant.
Make a list of the things your loved one needs help with in everyday life. This requires you to understand the problems your loved one is experiencing. Discuss this. Take the time to observe your loved one in action. Your goal here is not to physically do everything. It’s to identify problems and find solutions that will overcome these challenges. Keep your loved one as active, engaged, and independent as possible.
STRENGTHS – You are the official skills optimizer.
Make a list of the things your loved one can do by himself or herself at this moment in time. These can be used to maintain a sense of self-worth in your loved one. The more you encourage the use of these strengths, the less dependent your loved one will feel upon you. Everyone wants to feel like a contributor, not a burden. (Remember that things can change and you may need to adapt tools and assistance to meet these needs.) By having an inventory of your loved one’s current skills, you can find ways to enable him or her to continue achieving.
ACTIVITIES – You are the official social coordinator.
Make a list of the activities your loved one enjoys. Your purpose in listing these is to find ways to keep your loved one participating in life in ways that help him or her stay true to the self. Activities have real meaning for people and they provide enjoyment and stimulation. Are there new challenges because of illness or injury? Can some of the activities be adapted so your loved one can continue to do them with a little help?
ROUTINES –You are the official domestic routines coordinator.
Make a list of the routines your loved one needs help doing. Routines are done on a regular basis. Is it mowing the lawn, doing household chores or taking out the garbage? Will you need to hire someone, call upon a family member or friend, or do it yourself?
Does your loved one like to work in the yard, even with limitations? Or do the weekly food shopping? How can you help your loved one continue to do things that matter, even if it means making adjustments in how things are done? Many handicapped people can still be productive in the garden or the grocery store, as long as they have some help. Many can still do laundry themselves or cook uncomplicated meals. You need to understand what routines are possible and what routines are impossible for your loved one to continue.
SCHEDULES – You are the official schedule coordinator.
Make a list of the schedule your loved one normally keeps. What time does he or she usually get up? What time does he or she normally go to bed? When are meals usually eaten? One important thing caregivers need to understand is that their loved ones usually have an established schedule. When you are being treated for an illness or disorder, schedules can often be disrupted. This can create a sense of chaos for your loved one. By following his or her normal schedule, you can help bring focus and a sense of normalcy back to the family. You won’t always be able to do things on schedule, but understanding it can be very helpful for everyone.
CAREGIVER TIP – GETTING OUT OF THE HOUSE ON TIME
If your loved one is physically or mentally limited, getting ready to go out can take a lot of time and energy. Some patients can feel overwhelmed by the effort. If your loved one is exhausted, frustrated or rushed, find ways to cut down on unnecessary actions and make the whole process easier for your loved one to endure. Clothes and footwear that are easy to get in and out of will help.
CAREGIVER SUPPORT TEAM
What is your caregiver support team? This is a critical issue for you to understand because your caregiver support team can help you avoid some of the biggest pitfalls of taking care of a loved one. Stress, depression, and physical neglect can take its toll on family caregivers. The better you understand your responsibility to take good care of yourself, the better the care you will provide to your loved one. You need to be able to focus, to manage crises that arise, and to meet the constantly changing demands of caregiving. This requires:
PHYSICAL SUPPORT – You need help to get it all done.
You should never do caregiving all by yourself. Whether you get family support, friend support, volunteer support, or hired help, you need to know who you can call on for those times you need help providing care. Make a list of the people you can count on, what they can provide, and what their strengths are. There may be some people who are good at visiting your loved one when you want to pop out to the store for a few things. There may be others who are willing to be involved in regularly helping you with your loved one.
EMOTIONAL SUPPORT – You need a shoulder or two to cry on.
You will need emotional support during your time as a caregiver, and the harder the challenges you face, the greater the need for quality support. You need good people who can help you troubleshoot issues and find realistic solutions for problems. Avoid pessimistic people for your support team. Consider people who have walked in your shoes as family caregivers. Many caregivers find it helpful to join support groups. Whether it’s a national disease organization, a family caregiver organization, or even a local community group of caregivers, there are people out there like you.
FINANCIAL/WORK SUPPORT – You need help balancing out the realities of caregiving.
If you are still working full-time when you take on the care of your loved one, you will need to work out the challenges of sometimes being in two places at once. If your loved one’s needs require you to scale back your job or take on full-time caregiver duties, how will you manage the financial burdens of caring for your loved one? Some families provide a stipend to family members providing care, to help cover the loss of wages. Caregivers still need to have medical and other insurances, but in some cases, it’s possible to downsize while being a family caregiver. Make a list of your financial needs, ways to adjust them to fit the caregiver situation, and ways that you can eliminate unnecessary costs.
RESPITE CARE SUPPORT – Taking time for you is NOT optional.
Caregivers need to understand and appreciate the need for respite care. When you take time off from your caregiving, you are recharging your batteries. You should never feel guilty. If you start your caregiving by regularly scheduling respite time for yourself, your loved one has the chance to get used to the concept. It’s important to do this because down the road, should your loved one become more affected by his or her physical limitations, you will have established your routine of respite care. Make a list of family members, friends, and volunteer respite providers you can call upon. If you can afford it, there may be times that you utilize paid home health aides to care for your loved one.
CAREGIVER TIP – YOU NEED TO MAKE IT WORK FOR YOU AND YOU ALONE
This is your support team, your choice. It’s just for you. Pick the people you think are most likely to help. Recognize what each person can do for you.
DIFFERENT TYPES OF CARE
What do the parents of an autistic child have in common with the husband of a cancer patient, the daughter of a COPD patient, and the wife of a hip-replacement patient? They are all caregivers providing care to a loved one. The kind of care that is needed is determined by the physical, mental, and emotional needs of the person with limitations. There are different types of needs. What are examples of the differences?
-- Autism is a lifetime disorder
-- Cancer can sometimes be managed over time, but may reoccur or spread
-- COPD usually gets worse over time
-- Hip-replacement surgery is often successful
Every patient is different. Your loved one has specific needs affected by his or her health issues. Your care should take these into consideration, in order to maximize your loved one’s activity level and independence. What are examples of the differences?
-- Cancer patients may share a disease, but the outcome can be different for each type and each stage
-- Some cancers are more manageable than others
-- Survival rates can vary
The brain has Its own needs. Many people today are living longer with brain-related disorders and diseases. The kind of care you provide should be determined by the actual limitations and challenges faced by your loved one. What are examples of the differences?
-- A person who suffers a serious brain trauma may have long-term care needs
-- A stroke patient may improve with therapy
-- Someone with Alzheimer’s is going to get progressively worse over time
-- Someone with a brain disorder may be helped by medication
Some people think that if you are a caregiver, you should do everything for your loved one. That’s not true unless your loved one is completely incapacitated. It’s important that your loved one feels invested in making decisions that affect him or her.
-- Engage your loved one in the caregiving plan as much as possible
-- Involve your loved one as much as possible in the care by fostering independence
-- Working together as a team puts you on the same page; you’re both working for a positive outcome
THE FOUR TYPES OF CARE
There are four types of care that caregivers provide. You many end up providing more than one kind, especially if your loved one’s health declines and/or improves over time. These are:
Temporary -- the most common reasons people need temporary care are:
-- They have an injury that will heal
-- They are recovering from major surgery
-- They have a curable illness
Progressive -- the most common reasons people need progressive care are:
-- They have a progressive disease or disorder (cancer, MLS, Parkinson’s, dementia)
-- They are elderly
Serial -- the most common reasons people need serial care are:
-- They have a disease that can go into periodic remission (cancer, MLS, lupus)
-- They have a chronic injury or condition that can flare up
Permanent -- the most common reasons people need permanent care are:
-- They are disabled by injury, disease, or disorder
-- They are limited in their ability to engage in daily living activities independently
COMMON ISSUES FOR CAREGIVERS
Temporary and serial care have some things in common. As a caregiver, you need to understand these issues, not only to provide the right care for your loved one, but also to maintain and nurture as much of your own life as possible while providing care:
-- It’s hard to plan for the duration of the care
-- It’s important to gauge when to step forward and when to step back
-- You may have to provide care for a period of time, resume your normal life, only to have to provide care yet again if and when health issues require it
Progressive and permanent care have some specific issues that you need to understand. These two kinds of care are ongoing and will require more of your time and energy. You will need to plan for this:
-- It’s a serious commitment for the caregiver to provide care on a long-term basis
-- It’s important to understand what your loved one can and can’t do without assistance
WHAT CAN YOU DO TO MAKE THE CARE SITUATION WORK BETTER?
There are different strategies for helping loved ones who need care, depending on the duration of the need for care. How you approach your caregiving can help your loved one in positive or negative ways:
-- Encourage independence, not dependence
-- Loved ones who feel capable of providing for themselves tend to be more cooperative when receiving care
-- People who need care have fewer opportunities to achieve their goals than people who don’t need care; they can suffer a real sense of loss as a result of limitations
-- Appreciate what your loved one can do alone or with help and find ways to build on those successes
CAREGIVERS HAVE NEEDS, TOO --
As much as you need to dedicate yourself to providing care for your loved one, you also have to care for yourself. How you approach the care you give can affect your own life in positive or negative ways -- always keep a piece of yourself for you. Recognize that you are more than just a caregiver. Appreciate that you have to overcome obstacles in order to stay true to yourself while a caregiver. Set realistic goals for your own achievements and be proud of your accomplishments. Toot your own horn once in a while. And always ask yourself this at the end of the day: “What would my loved one’s life be like if I weren’t here to provide care?” As tough as it can often be on you, your loved one is more likely to receive better care at home. Knowing that can help you appreciate the importance of taking good care of yourself. What you are doing as a caregiver has real value.
STRATEGIES FOR CAREGIVERS
Temporary care issues are fairly predictable and have some common elements for caregivers:
-- Temporary care has a beginning and an end
-- It’s sometimes hard to know how much help to give and how to give it
-- People who need temporary care can become impatient with the limitations they face because they know they are supposed to get back to a normal life
Temporary care strategies can help you minimize frustrations for both you and your loved one:
-- Temporary care will end when your loved one is able to resume normal activities
-- Your loved one needs to focus on what it takes to get back to his or her normal life
-- Enable, don’t disable your loved one
Progressive care issues can be more complex because your loved one will significantly change as his or her health declines:
-- Progressive care requires an increasing need for care over time
-- It can be difficult to determine the need for more care, especially if a loved one is resistant
-- It’s sometimes hard to accept that things are going to get worse, for loved one and caregiver
Progressive care strategies can help you plan ahead before the actual health of your loved one declines. By becoming proactive, you will be better prepared to face the challenges calmly and reasonably:
-- Progressive care needs will escalate, requiring that the caregiver become more involved in daily care, even if it involves hiring help or coordinating volunteer help from family and friends
-- You will need to plan for future care, have an understanding of the progressive steps of the disease or disorder your loved one faces, and know what actions can help
Serial care issues are sometimes complicated by the unpredictability of your loved one’s disease or disorder:
-- Serial care is repeated periods of temporary care as needed on an ongoing basis
-- A return to a need for care can make your loved one very frustrated, angry, or depressed
-- It’s not always easy to predict how long and how much care will be needed
Serial care strategies can be developed ahead of time, taking into account the potential care needs, but you will often have to be able to adapt your care to fit your loved one’s actual needs. That requires flexibility on your part:
-- Serial care will only be necessary as symptoms and limitations warrant
-- You will need to plan for current care and for potential care down the road, especially in terms of your own responsibilities and duties outside of caring for your loved one
-- Expect the worst, plan for the best; be prepared for what might go wrong and what can go right, so you can make the most of the good moments as they come
Permanent care issues depend on the actual level of dependency of your loved one. Some people with permanent disabilities and limitations are able to do a lot for themselves, and once you understand what is needed, you can lead a fairly predictable life as a caregiver. Other people have significant health challenges, and this can mean that you must be able to respond quickly when there is an emergency. The more you learn to recognize the warning signs, the better able you will be to manage the crises your loved one faces.
The less your loved one needs help with daily living, the easier it will be for you to provide permanent care. The more your loved one needs help with daily living for care, the greater your need for good support and good resources:
-- Permanent care is a consistent need for care over time
-- It can be difficult to assess your loved one’s capabilities and to foster independence
-- It’s hard for caregivers to achieve their own goals without a concerted effort
Permanent care strategies require a good assessment of your loved one’s actual capabilities for self-care and your own ability to maintain your own life goals and plans while providing care. Many caregivers who provide care on a permanent basis live very stressful lives if they provide care for more than a few hours a day for their loved one:
-- Permanent care will require your participation over time
-- You will need to merge your loved one’s need for care with your own needs and goals
-- Recognize that you need a long-term support system to help you do long-term care
STAGES OF CAREGIVING
There are four stages of caregiving, but not all caregivers go through each stage. Where are you as a caregiver?
Stage 1 -- Basic Care -- easy, casual assistance for common tasks, activities and issues
Stage 2 -- Intermediate Care -- more involved assistance for common tasks, activities and issues; greater dependence on the family caregiver
Stage 3 -- Advanced Care -- very "hands on" caregiving, with much time spent providing physical care and dealing with related issues
Stage 4 -- End-of-Life Care -- intense caregiving that involves providing "comfort care" to loved one
BASIC CARE
Basic care is fairly simple and predictable. You can see what your loved one’s physical needs are and it’s fairly easy to meet those needs. It’s also usually easy to get other people involved in the care:
-- You usually spend 4-8 hours a week providing care
-- The care is uncomplicated and straightforward
-- You act as a helpful companion
-- Your loved one is still active and independent, but has some limitations
-- The need for care may be temporary, due to surgery or illness that is not life-threatening or aging
-- There are simple solutions to common problems
-- This is a mutually cooperative relationship because care needs are manageable by both loved one and caregiver
Common tasks in basic care are often easy to determine, because you are aware of what your loved one can and cannot do:
-- Your loved one may need help with big physical tasks
-- You may occasionally drive for your loved one
-- You may accompany a loved one to important medical appointments
-- Your loved one may need assistance with grocery shopping and other errands
-- You may provide assistance and physical support after surgery or during illness
-- You may organize activities and home duties to make things easier for your loved one
Common issues in basic care are often related to the emotional reactions and physical frustrations of normally independent people suddenly needing help with daily living:
-- Your loved one has an awareness of dependence, even on a temporary basis
-- He or she may experience frustration with current limitations
-- Your loved one is looking for a balance between needing help and providing for self
Your caregiver goal for basic care is to encourage your loved one to remain independent and focused on the positive things he or she can still do.
INTERMEDIATE CARE
If you are providing intermediate care for your loved one, you are at a critical juncture as a caregiver because you are more significantly involved in your loved one’s life:
-- You provide more than 8, but less than 15 hours of care a week
-- Physical limitations interfere with your loved one's normal activities
-- You arrange care around your loved one’s needs
-- Your loved one has a greater need for monitoring, communication, reassurance
-- The balance of the relationship begins to shift from cooperative to dependent
Common tasks in intermediate care often involve making arrangements for your loved one’s medical, financial, and social needs:
-- The family caregiver is the care coordinator
-- You and/or other family members do routine driving around town for your loved one
-- Your loved one needs help with meals and other household activities
-- You accompany your loved one to medical appointments, tracking medical issues and records, prescriptions, treatments
-- You coordinate and/or monitor care in the home
-- You spend more time organizing, overseeing, or completing household tasks and responsibilities for your loved one
There are some common issues in that may surface when your loved one needs intermediate care:
-- Your loved one has a growing awareness of increasing dependence
-- He or she may have and may express fear of the future, especially if there is a progressive condition, disorder, or disease
-- Your loved one may be concerned about becoming a burden
-- Decreasing physical abilities interfere with everyday life
-- Your loved one may experience increasing frustration when trying to overcome obstacles
Your caregiver goals in intermediate care are to keep your loved one as independent as possible, find ways to address the physical limitations he or she experiences, the emotional aspects of the need for care, and to create your resources list. This is important because as time goes on, it becomes more likely that your loved one will develop a need for advanced care. By preparing for the possibility ahead of time, you will be better able to use your support team and your resources should the situation arise.
ADVANCED CARE
Advanced care is often a serious challenge for any caregiver, because it usually means your loved one is dependent on you for just about everything:
-- You provide more than 15 hours a week, so it's labor intensive
-- Your loved one has a greater need for hands-on physical care
-- He or she has a higher level of dependence on the family caregiver
-- Palliative care and pain management can help reduce symptom discomfort
-- Safety often becomes an issue for your loved one
-- You benefit from utilizing resources to help you provide better care
There are some common tasks in advanced care that require some significant sacrifices on the part of the caregiver. Your loved one may need supervision around the clock, especially if he or she is at risk of a fall. Very often, the need for advanced care is the result of declining health, so there is a much greater level of dependency:
-- The family caregiver is the care manager
-- Your loved one needs help with most activities
-- There is a greater need to assist with mobility, especially if your loved one is unsteady on his or her feet
-- You often have to take over the physical management of the household
-- Medication management is important -- you may have to take over dispensing prescriptions and supplements, to insure patient safety
-- You may be in charge of coordinating in-home care services
-- You are likely to provide greater assistance in helping your loved one make decisions about everything, whether minor or major
There are often common issues that arise as your loved one develops a need for advanced care, and these can be especially challenging for you if you don’t have good support and resources to help you provide care:
-- Your loved one may experience increased depression, frustration, or anger
-- Fatigue, whether it’s physical, mental, and emotional, may limit your loved one's activities and ability to participate in everyday life
-- You can observe progressive physical deterioration
-- There is greater risk of injury in the home from falls, burns, accidents
-- Your loved one may experience an increase in serious health problems that require routine and emergency medical treatment
Your caregiver goals in advanced care are to address the changing physical, mental, and emotional needs of your loved one, use your resource list to get the kind of assistance you need to be a good caregiver, and to take care of your own health -- don't ignore symptoms of ill health or caregiver burnout. Take regular respite time to recharge your batteries and maintain your own interests in life. It’s important for you to balance out the care you give with your appreciation of the sacrifices you make. You need to appreciate what you do for your loved one, because that’s when you will feel it’s all worthwhile.
END-OF-LIFE CARE (HOSPICE)
This is often the toughest kind of care to provide because you are preparing to say a final goodbye to someone you love. That means that you are starting the grieving process while you are still providing care, and you are likely to be very aware of the physical, mental, and emotional changes in your loved one:
-- You are likely to provide and/or coordinate around-the-clock care
-- The hospice team comes to the home to provide medical treatment and to instruct you in care
-- You, as the family caregiver, will work with the hospice team
-- This is a very emotional time for family and friends
-- Directed comfort care and pain management can ease suffering for your loved one
-- There are often rapid physical changes and medical treatment is adjusted to meet these changes
-- Rest is important for your loved one and you may see a significant increase in sleeping
There are some common tasks in end-of-life care that are likely to be very different from what you have already experienced as a caregiver:
-- You are the hospice coordinator, working under the direction of the hospice team
-- Your goal is provide your loved one with the best comfort care possible
-- Medication management for the dying patient is critical
-- Nutritional needs change as death approaches
-- You are likely to provide physical assistance for most or all activities
-- You can help loved one finish unfinished business
-- You are likely to keep family and friends directly informed of loved one’s condition, or work with a family member to do so
There are common issues in end-of-life care that you will not see during basic, intermediate, or advanced care. Very often the whole family is affected by the reality of a loved one’s dying:
-- Many families experience depression, anger, sadness during hospice care
-- Your loved one may feel frustration with or denial of impending death
-- He or she may have fears of how death will come and what will happen to the family afterwards
-- The family may feel uncertainty and dread as your loved one's health begins to spiral downward
-- Your loved one may have extreme fatigue due to the physicality of death
-- Physical pain, discomfort and muscle atrophy may result from the body's deterioration
-- In preparing for death, your love one may physically and socially withdraw
You have very important caregiver goals in end-of-life care. Your job now is to provide physical, mental and emotional comfort to your loved one, in place of a cure. Take respite time, especially because you need to accept and process the reality of hospice care and your loved one’s eventual death. Accept that the death of your loved one is not a failure of your care. It’s a natural progression of the serious health issues your loved one faced as the result of a disorder, disease, or even just the reality of how we age as human beings.
When the end comes, gather your family and friends together. Understand that your emotions will be strong. Reach out to each other and share your grief and your memories.
Honor your loved one by acting in ways that he or she would admire and appreciate, by sharing stories, memories, and the things you most loved about your loved one.
For more help with your caregiving, please visit The Practical Caregiver Guides:
http://www.practicalcaregiverguides.com
Other Practical Caregiver ebooks are available at Smashwords: