Caregiver's Bill of Rights
- I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
- I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.
- I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.
- I have the right to get angry, be depressed, and express difficult feelings once in a while.
- I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn't matter if she knows that she is doing it or not.)
- I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
- I have the right to take pride in what I'm doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
- I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.
You can't care for another until you care for yourself.... first! Getting more fuel into your emotional tank will enable you to keep going as a caregiver.
The initial reaction of every involved caregiver, is to stretch one's own mental and physical abilities, to breaking point.
There is a hidden irony in this. The primary aim of any caregiver-patient team, would be to maximize well being and longevity of the patient. If you are expecting to succeed in this endeavor, it automatically implies a long span as a caregiver. No person can go for very long periods of time, by neglecting their own welfare. The irony lies in choosing short-term exhaustion over long-term goals.
Even on the days when you are not experiencing a lot of stress, it’s still good to prioritize calming yourself. It’s especially helpful when you are very stressed, as self-care often falls by the wayside.
Believe in Yourself -
and Take Charge of Your Life
Very often, both patient and caregiver, are pulled into a vortex of disease related activity. The actual treatment and medicine regime, information seeking, interaction with medical workers, fund planning, physical exhaustion, all are to be dealt with, over and above the symptoms themselves. This all leaves very little time, energy and enthusiasm for anything outside of this realm. However, if you make a conscious effort to retain normalcy, you will continue to be hopeful of returning your patient to this normalcy too. If you lose all hope and aspiration yourself, how are you going to motivate your patient?
Family caregiving is about a relationship between many people. Choosing to take charge of your life means, you recognize that you are only one member of the caregiving team. Making active choices in your own best interests is not selfish; rather it is often the most important choice you can make for your entire family.
As we travel through life one thing is for certain we will meet head-on with "life changes." It is said, "Life happens while we are busy making plans." We can try resisting change; however, change is our constant traveling companion - and sometimes an unwelcome guest. Unexpected changes tend to unnerve us and make us feel uncomfortable - it's like traveling through uncharted waters without a compass. At times change can make no sense - it either comes on too quickly or evolves too slowly. As we travel between life changes, it is the unfamiliar road in between when one route ends and a new route begins when we feel the most uncomfortable.
Becoming a family caregiver is one of those life changes, which can occur suddenly and without warning, or it can evolve slowly over time. However, regardless of the events, which place us in the caregiving role, it is the unfamiliarity of the uncharted waters, which cause us the most distress. If we choose to constantly fight change, we will struggle our entire lives. We need to find a way to embrace these changes or at the least accept them.
I can't stress enough the importance of trying to maintain a positive attitude by recognizing your strengths and limitations. By believing in yourself and recognizing your strengths and limitations, it will go a long way in your ability to set goals and boundaries for yourself and for your loved one.
Just as the patient needs to educate himself about his disease, the caregiver too, needs to be well informed. Very often, you may be participating in the diet and treatment implementation. If you are ignorant about these, you may end up making serious errors.
Sometimes, acts of omission are as decisive, as preventive or corrective measures.
Encourage your patient to learn more with you. Ask questions, read books, visit web-sites. Do everything that is within your means, to be prepared for whatever your patient's disease entails
It is said that knowledge is power and being armed with an understanding of what you are dealing with definitely provides you with a powerful tool for conversing with the various medical professionals taking care of your loved one. It transforms you from being viewed as a sad-eyed relative into a resourceful advocate. Gaining an understanding of their rules and practices will make you feel more in command of your caregiving situation and help you get the information you need and the respect you deserve that much more quickly and with less hassle.
Find out what possible scenarios you may have to witness. If necessary, visit the hospital unit beforehand, without your patient. That way, you can steel yourself, without showing your distress to the patient.
Some diseases involve painful or difficult treatment, examples: chemotherapy or dialysis.For the new patient and his family, these can be frightening and shocking. You are both thrust into an alien situation, without really knowing what to expect. You may need to have the strength and stomach to witness injections, oozing blood, vomit, etc. The routine, apparently impassive behavior of the staff is further disconcerting. Obviously, all this can be quite hard to deal with. Especially if you have never been exposed to the medical field, beforehand. If you have received no counseling, all this can be overwhelming.
Disease symptoms themselves can be very hard. Watching a loved one in acute distress is never going to be easy. Further, many chronic diseases are degenerative. You require to prepare yourself for all the possible pitfalls. Only when you are prepared, can you start helping the patient prepare. You will have to learn to be matter-of-fact and emotionally restrained, if you want to provide any assistance to your patient.
Encourage and allow your love one to be independent.
The protective instincts of a caregiver have to be contained consciously. The more active and independent that the person you care for can be, the better are his chances of successfully overcoming his disease.
Allow your love one freedom to do everything that she/he can mange by himself. The patient is already fighting helplessness and depression. Often, the overwhelming frustration is due to having become "dependent" to any extent, on another person. The more that he can manage by himself, the more the hope of recovery. Rather than succumbing to your nurturing instincts, it is better to keep hope and enthusiasm alive in the patient.
If necessary, provide discreet support in the background. But avoid being overbearing. Strict controls only provoke the patient to rebel in frustration and you end up having to combat non-compliance.
Allow the patient to take his own medication, make his own appointments, discuss with his physician, etc.. You will provide maximum benefit, by simply being available if needed. Taking charge of all activities can lead to the patient completely losing self-confidence.
What starts out as your well intentioned, caring and comforting attitude, can fast lead into dangerous territory. The patient can lose all interest, stop being responsible for his own well-being and instead turn complaining and petulant, when you can't keep up the same level of support.
If your objective is to help the patient lead as normal a life as possible, then the basic thing to do, is treat him as normally as possible.
Be honest with the person in your care
Often, doctors and staff choose to inform the caregiver of the present status and proposed measures, instead of the patient. You may be required to convey this information to your patient. In such situations, sometimes the caregiver is tempted to withhold disturbing information. Instead, they try and cover up, saying all is well. However, I would suggest that the patient is always as well informed as possible.
You can be gentle and supportive. But withholding the truth has little benefit. Keep in mind, that even sedated or unconscious patients have been known to absorb conversation around them. The chances of the patient hearing part or mistaken information, from one of the many people surrounding him, are quite high.
Besides, you would be depriving the patient of preparing himself mentally, as also of informed decision making. He will be the one bearing all the consequences. Would it not be fairer to ensure that you, the caregiver, maintain an honest and trusted role in his life?
Clarify your love ones Choice
Be sensible and honest with each other.
Discuss honestly, the possible course the disease may take. Understand your patient's views clearly. Encourage him to make an oral or written "living will". This way, you will have a clear understanding of which treatment and extent of medical support the patient desires. Convey this information to the primary physician too. Doing all this when the patient is in relatively stable or good health, is always better.
Ultimately, the patient is the one who endures all the physical trauma. Your emotions may cloud your judgment, if you are called upon to make these choices. If your patient is not in a position to convey his own options, your choices will be hard and difficult. It is far better to be armed with clear knowledge of the patient's will and intent, to execute such decisions.
Prepare yourself mentally to the possibility of having to actually execute such wishes. Insisting upon "Do Not Revive" may be the hardest thing you ever have to do. But if your patient has insisted upon this, like any other "will", his wishes should be honored. As also, any eye or organ donations that he may have willed.
Constantly Express Affection
The caregiver is sometimes forced into the role of the disciplinarian, as you have to help the patient follow his diet, medication and treatment plan.
Perhaps, you may assume the role of a teacher or guide, in trying to motivate the patient to live actively and positively.
Concurrently, you are restraining your own emotions and trying to act objective and level-headed.
Unfortunately, there may be occasions when you are forced to see your love one physically changed, hooked to all kinds of devices, with different needles and tubes attached. At such times, even the nature of hom or her may be different. He may be tired, uncommunicative, depressed or irritable. Disbelief and consequently, detachment can set into your approach.
You may have to remind yourself about how that person truly is, under normal circumstances. That he is still hidden there, below all this trauma. Help him remember this as well. Together, you must bring him back to normalcy.
Hospital units may leave little privacy, to both, the patient and caregiver. Expressing affection in front of others, does not come easily to everyone, especially in reserved societies. Public displays are frowned upon.
Due to all the above factors, routine display of love and affection may become limited. Consciously avoid this. It is a well accepted fact, that demonstration of love and affection, play a huge role in healing. The human touch, especially of a near and dear one, has been known to lower anxiety, mental trauma and even physical pain.
Don't allow yourself to be intimidated or embarrassed by the situation. Your patient will benefit immensely, by you verbalizing your love and offering your reassuring touch. Tender Loving Care, or TLC, can prove to be one of your patient's most potent remedial therapy.
Many caregivers say that they wish they had gotten respite help sooner. Some say that they waited out of pride or guilt. Others just didn't think of it earlier.
Respite providers spend time with the patient so you can rest, see friends, run errands, or do whatever you'd like to do. Respite services can also help with the physical demands of caregiving, like lifting your loved one into bed or a chair.
If this service sounds useful, you may want to:Talk with your loved one about having someone come into your home to help out from time to time. If she seems to resist this request, you may want to ask a friend or family member to help explain why this could be good for both of you. Get referrals from friends or health care professionals. Your local agency on aging should also have suggestions. Ask the respite helpers what types of tasks they do.
You can get respite help from family, friends, neighbors, coworkers, members of your faith community, government agencies, or nonprofit groups.
Whatever you do, remember that you haven't failed as a caregiver if you need help and relief.
It isn't possible to talk about self-care for family caregivers without talking about respite. More than any other service respite, or a break, is what family caregivers want most. The primary purpose of respite care is to provide relief from the extraordinary and intensive demands of ongoing care to someone with special needs, thereby strengthening the family's ability to provide care. Respite care is planned and proactive.
Respite means taking a break before extreme stress and crisis occurs.
An exotic holiday is nice, but the Coffee Shop will do.
A respite doesn't have to mean a week on the French Riviera, although that sounds pretty nice. It doesn't even have to be a weekend visiting friends, at least not at first. A respite can be as simple as lying on the couch with the lights dimmed listening to your favorite music, especially if you do it on a regular basis. It can be going to the movies or having a manicure every other week. You might even think of your three times a week exercise routine as a respite, if you enjoy it, rather than thinking of it as something you do because it is good for you.
Continue all possible social activity. If you can't take him for a hike, but a walk in the park is still feasible, do that instead. If you can't go out dining at restaurants, go over to family, who discreetly prepare the menu relevant to your loved one's diet. If you can't go bowling, have friends over for a round of board games instead. Try and keep your patient and yourself, as connected as possible, to a normal social circle.This alone can increase his well being and optimism, well beyond measure.
What you do on a respite break, regardless of its length, is up to you. It has to meet your needs, break your tensions, and renew your spirit. It needs to be the right medicine to cure, or at least ameliorate your current stress. It needs to be for you, precisely because you do so much for others and because you deserve it.
Stop Feeling Guilty caregivers guilt
Next time you feel guilty for even thinking about taking a break, remember it is only partially for your benefit. Your loved one will reap a great deal of the benefit as well. Respites are guaranteed to take the edge off your tension, renew your energy and give you a fresh dollop of patience with which to pick up your caregiving duties once again. Respite is the primary mechanism you have as a family caregiver to refill your tank and thereby keep on going. Respite enhance the capacity to cope with stress, lessen the number of institutionalization, and created greater optimism about the caregiver's ability to continue to provide care.
Protect Your Health
Ensure that you are eating quality, nutritious food, at regular times. Without fuel, you cannot possibly stand up to all the extra work. Do not confuse the patient's diet restrictions, with what would be good for you. Many caregivers try and switch over to the patient's diet, because of feeling bad or guilty, that the patient has certain restrictions. This may be harmful to your well being. Besides, if you have clarified the roles, you will understand that your abstinence is not helping the patient. It is only making both of you feel sorry about giving up something you may have enjoyed before.
It is critically important to maintain your physical and emotional health and well-being - if you don't who will? Your good health is the greatest gift you can give your loved one and your entire family.
You must get help for yourself for the sake of yourself and your love one. Reach out for help!
Reaching out and asking for help is never a sign of weakness, rather it demonstrates strength and a keen awareness of your own abilities and sense of self.
Providing help is something that family caregivers do every day. Often times we want to handle all caregiving chores in an effort to make things happen. Sometimes we view constant activity as a sign of strength and passivity as a sign of weakness. Often times the reverse is true. We need to learn how to define the help we need and then to ask for help.
If we are constantly struggling, perhaps the universe is trying to tell us something. We have the right and the obligation, to ourselves, to reach out and seek help. Help can come in many forms such as:
- Others pitching in and taking over simple chores.
- Employers willing to work with you in balancing responsibilities and work schedules.
- Acquiring educational materials to help you make sound decisions.
Researchers believe that only 2% of caregiving employees actually utilize the programs that are available to them and it is critically important to find out why. It is not a simple question. Part of the answer may lie in the nature of most of the programs being offered and part may be related to the psychology of what it means to be a family caregiver. If you are a family caregiver in the work place, try to reach out to the help that may be there waiting for you.
The initial protective instincts for a loved one, may prompt you into trying to do everything yourself. If assistance is offered, do not hesitate to accept it. This will help you conserve energy, as also give yourself and your patient, a change.
Most things, you will have to do yourself. But help can always be taken for housekeeping, grocery and medicine shopping, baby-sitting, dog walking, driving, etc.. At least the burden of ordinary chores can be relieved.
Many of the people surrounding you may want to help and cannot imagine how to do this. Tell them yourself. Pride and ego have no place in such situations.
If it becomes necessary and you can afford it, consider day care facilities or nursing assistance at home. Choose pragmatic options over emotional ones. Help of this kind will allow you to enhance your productivity and income. This can provide change as well as financial relief.
Fortify Your Mind
Seek assistance in faith, religion, spirituality, family or community. The stronger you become, the more support you can lend to your loved one. Tough times are a frequent part of chronic illness. The patient is physically sapped and may often lose will and hope. You have to be well prepared for such occasions. Only if you are inherently composed and capable, can you offer strength, support and determination to fight the disease.
Food plays an incredibly important part in cancer and in chronic disease. Chronic diseases generally have prescribed diets and restrictions. As we normally eat three meals a day, this restriction becomes a constant reminder of the condition. Even if the patient is feeling relatively well, he is not allowed to forget that he has a serious ailment.
Added to this, is the frustration of giving up items that have been thoroughly enjoyed before. To top it all, several medicines may have to be ingested after meals. All these factors make meals a highly stressful affair.
Strive to improve the enjoyment. Improve the ambiance as much as possible, to distract from the compromises made in the food itself.
Use a favorite and allowed food as a treat or incentive, to persuade the patient to eat a required, disliked item. Become well versed in allowed substitutes. For example, when salt is cut down, herbs or lime can add to the flavor.
Find different recipes which are tailored to the diet, but are yet interesting. The internet is a wonderful source of all kinds of special recipes and allowed substitutes. You may have to try food from a different nation, but eventually, some of the abundant varieties in the world, will meet both diet and appeal. Attractive presentation will make the food more appealing. Color, arrangement and any possible aroma (allowed herbs or condiments) will enhance interest.
Have enjoyable company over. It can be a potluck, so as to minimize your workload.
This may all seem like a lot of work and fuss. There is a reason. If your patient loses interest in food, constantly complains, gets bitter and unhappy and reduces intake, there will be a heavy price to pay.
Without adequate nourishment, immunity, health, well being and will to live, all decline rapidly. Extra efforts are worthwhile, to avoid the possible complications of reduced intake.
Speak up for your rights - inform yourself
I encourage and stress the importance of arming yourself with vital information regarding your loved one's diagnosis and treatment options. Having the proper information is the gold standard in achieving the ability to advocate for your loved one and developing strong self-advocacy skills. By keeping the goal of receiving quality healthcare and making it a priority, you can avoid future medical problems and create a superior quality of life for all involved.
Through my work with caregivers I realize first hand that caregiving can be difficult because most of us are current or former family caregivers. I understand that caregiving requires the constant juggling of work, family life and maintaining our own autonomy. Without the adequate support, information, education and training, we cannot possibly maintain and continually meet the needs of our entire family.
Simplify your life
The need for simplification can be stated quite simply; with all the unique jobs you as a caregiver have to do, and the fact that you never seem to have enough time to them all, it is sometimes necessary to take a step back and just take a deep breath and: Simplify, Simplify, Simplify. Figure out the things that absolutely must be done, and do those first. Don’t try to do everything at once. You can’t, and you’ll just cause yourself more stress. Do the important things. You’ll find that often the other things will sort themselves out.
Look out for products and services that will help you fulfill your caregiver role more quickly and easily.
A caregiver may need to brush the teeth of a bed-confined care recipient, or bathe a loved one with limited mobility. Look for products and solutions that will help you perform these tasks quickly and effectively. Some services that can help you simplify are home delivery of groceries and healthcare products, and cost-effective transportation such as senior community buses or vans. These services are there to help you. Use them. The less complicated each task that a caregiver performs is, the easier it is for the caregiver to move up to the next step on the pyramid: peace of mind.
Peace of Mind
When the caregiver feels that the needs of their care recipient are being met (they have the information they need to make better decisions and they have found solutions for simplifying their life and daily tasks), the caregiver’s needs tend to shift from the needs of their loved one to their own needs. Some caregivers never reach this point, but it is absolutely vital for a caregiver to take care of themselves in order to provide the best care to their loved ones.
When a caregiver’s own needs are taken care of, it is at this stage in the pyramid that peace of mind can occur. Peace of mind refers to the caregivers’ ability to “connect” with their care recipient from a distance. Knowing that their loved one is safe and is receiving proper care in their absence can reduce stress and allow caregivers the opportunity to focus guilt-free on other demands, such as work or other family members. Sometimes this stage is only possible when the caregiver has additional help or support systems, such as an elder-care community center, or a visiting healthcare professional.
Time for Me
Perhaps the greatest unmet need among caregivers, although infrequently stated voluntarily, is finding personal time for themselves. This need occupies the top of the pyramid, and reflects the importance of maintaining one’s own health while managing the health of others. Over 90% of caregivers say they need more help managing their emotions. Caregiving takes a toll both physically and emotionally. Solutions that allow personal time and pampering occasions for the caregiver result in healthier, more emotionally stable care providers. A net positive effect on the care recipient is also likely to occur. The message here is simple: find time for yourself.
Everyone is telling us to take responsibility for our own health. We hear it on TV and read it in magazines. Prevention is the message of the day.
Unfortunately, family caregivers as a rule do not always do a good job of taking care of themselves. We are always putting our loved one's health and well being first. After that, there is not much time or energy left for ourselves.
The extreme stress that many family caregivers experience has been shown to affect our immune systems making us more prone to chronic illnesses ourselves. It can cause premature aging and in some cases result in premature death.
- If you are run down, tiring more than usual, will you be able to provide good care?
- If you have a cold or the flu, will your loved one catch it from you?
- If you become depressed will you be able to make good decisions, will life become unbearable?
- If you are not well, who will fill your shoes, whether temporarily or permanently?
These are not questions to be taken lightly. Your own good health is the best present you can provide to the person you care for.
As caregivers, it is important we recognize and not ignore the physical and emotional symptoms which may impact our own health and well being. We need to guard against caregiver burnout and avoid becoming overly tired and exhausted, which can reduce our own body's ability to ward off illness.
It is important to remember to create balance between caring for others and caring for ourselves. But how? You begin by believing - truly believing - that protecting your health is an absolutely critical thing to do for yourself and your loved one. You may not be able to do this easily, especially if guilt tends to get in your way; but it is vital that you try.
An astonishing number of peers have difficulty in dealing with chronic disease patients. Many may even avoid meeting or interacting with your patient and yourself, confessing helplessness and fear.
Support and acceptance from your social network can be a boon. However, this is unfortunately rare. You may need to evaluate the people surrounding you and educate them in how best to deal with your patient. If necessary, speak to them privately and prepare them for whatever the present state and forthcoming condition is likely to be.
Encourage them to behave as normally as possible with the patient. Most patients prefer to have their disease referred to in a matter-of-fact way. Excessive emotion or obvious disregard, can both be equally disturbing. Such reactions can imply a whole host of negatives for the patient. It may increase the patient's own fears and depression. Or it can be interpreted to imply fear, horror, "death sentence" or even revulsion, in case of visible symptoms or disease consequences.
Even if it sounds rude, it is better to warn your visitors not to discuss their favorite "medical horror story" with your patient. Learning about another's miserable experience is hardly going to be a comfort to you both.
Others may not realize the huge efforts made by the patient and caregiver, to boost their optimism and confidence. Disturbing visits can undo weeks of intensive effort.
Instead of exposing your dear one to such negative influences, try and increase his interaction with the strong, positive and cheerful people in your community. Surround him with those who show acknowledgment and support, instead of fear, pity or sympathy.
Caring for a chronic patient, need not be conveyed by a display of sorrow and grief. Solidarity, enthusiasm, humor and thoughtfulness are far better means. Show him all the beauty in living, so that he is motivated to return to a state of well being.
If all that he sees is despair and despondence, there will be nothing worth fighting for.
Keep a positive attitude
Perhaps the most important choice you have to make is how you are going to approach life from here on out. You can choose to drink the sour juice of lemons or you can try to make lemonade out of them. People who go for the lemonade inevitably end up happier, healthier and more capable of proactive action on behalf of their loved one and themselves. Your decision will set the stage for everything else you do.
Choosing to take charge of your life means recognizing your own strengths and limitations. We all have them, of course, and they affect what we can successfully do ourselves, and what we often need help with.
Knowing your strengths and weaknesses allows you to set boundaries and can give you the confidence to know when to say “no” and when to ask for help -things many family caregivers find very hard to do. Being aware of your strengths and weaknesses and how they may change as you age is a very important step in becoming a resourceful caregiver.
Knowing yourself and understanding the circumstances that surround you is a start, but taking charge of your life shouldn’t end there. There are other actions you can take to feel more in control. For instance, you can either be proactive about the situation you face, or reactive regarding the caregiving needs of your family.
Being proactive means:
- Looking ahead and planning to the extent that you can.
- Trying to prevent crises rather than letting them happen. In caregiving, one proactive step we all can take is making sure we and our loved ones have the legal paperwork necessary for making critical medical decisions. No one likes to deal with these things, but proactive people make it their business to find a way.
Proactive people always have a better chance of staying on top of a situation, but being proactive doesn’t come naturally to all of us. If being proactive isn’t in your nature, then you need to find a friend or family member who is. This is especially important if you want to feel at least somewhat in charge of what happens to you and your loved one.