How to Deal with the Stress of Being a Caregiver

Being a caregiver is often physically, financially and emotionally exhausting. It often falls upon one or two people in the family, primarily a female. Even if one is not responsible for being the caregiver 24 hours a day, stress ensues over worrying about the person, often leaving the caregiver to rush through personal errands or not being able to enjoy their limited time off. Yet when one is a caregiver, they are torn between their love for the person they are caring for and the heartache of seeing them so frail and sickly, a person often altered by being cranky or frustrated themselves, and their own body needing rest and not being able to ever truly relax. This leads to high tension, sometimes fueled by the thoughtless remarks of others, sometimes even by comments of the person needing the care. Several emotions can occur that one might not expect in this situation.

The behavior of a person who is ill may embarrass you in front of others, especially if someone is cranky, despondent, depressed or altered by medication. One person reported the pain medication given to the ill relative she cared for either made her cranky and snap at others, sleepy and unable to see visitors, or have crying jags for what appeared to be for no apparent reason. Caregivers often find the erratic behavior and recollections of a person affected by Alzheimer's upsetting. It is often helpful to explain to well-meaning visitors the nature of your loved one's illness to help them to understand what to expect and to help them assess what might be a reasonable visit duration. It will help them cope with their own feelings of not knowing what to say or do to help out, and perhaps help them to show "fellow feeling" and patience. Once in my early twenties, when visiting a family friend who was terminally ill, I foolishly once thought if I ignored the problem and just chatted about everyday trivial issues, it would embarrass her less, as if everything was normal, when really, that was just a taxing visit for her. While an ill person knows they are sick, they may not realize how different they have come to look while being ill, any remarks or reactions of surprise may hurt them. The best way to be able to be prepared as a visitor is to know the status of the person so that they can plan their visit. It might be helpful to warn any visitors in advance of any alarming physical side effect that the illness, surgery, or medications cause the ill person, such as a rapid weight change, swelling or changes to the face. A good example is how a person might appear after a stroke can be alarming if a visitor does not know what to expect in advance. Another issue that can arise is many of us bring small gifts or flowers when visiting an ill person, but often think of this gift as something appropriate for a short term illness, (such as something for sick person who is bored - like a book or movie or candy, etc) not what it appropriate for a person in need of constant care. I have been embarrassed underestimating the true status of a sick person, bringing a book to someone who was too weak to hold up the book to read and cookies to someone who was at the point of end stage cancer and no longer enjoyed eating or the smell of food. I brought flowers to someone after they had surgery. They were allergic and had a sneezing fit, which was very painful for them and probably risky while the stitches were healing. Have you ever visited someone in the hospital and seen crazy rules like not bringing balloons as present to certain wards? While this seems like a crazy rule, it is actually because if a balloon pops it can startle someone, which seems like no big deal to a healthy person, but that "jump out of their skin" motion is very painful to someone who has an injury to their spine or neck or back, so balloons are at times banned from floors or wards that have patients too fragile to sustain this sort of surprise. No matter how considerate a visiting guest might be, they simply cannot know all of these details that a caretaker lives with everyday. While the caretaker is aware of these changes, they are often a shock to a visitor, even a regular one. The actual state the ill person is in might assist the person in bringing a more appropriate gift, such as a book or puzzle might seem thoughtful if the person is unaware that the ill person cannot sit up to read or do a puzzle. A gift of food or candy might seem appropriate if one does not realize the dietary issues or inability to eat that might be associated with the health problem. Being aware in advance of the stage the ill on is in might help someone to perhaps bring a more appropriate gift for the circumstances. The embarrassment the visitor feels for not knowing the true status and doing or saying something inappropriate can at times be expressed in shocked sentiments to the ill one or even anger at the care taker for not informing them or appearing to not notice the problem. It is helpful to you both to inform of any such issues in advance.

Another emotion that is difficult to deal with when being a caretaker is how scary not knowing about the disease or condition itself. It is important for you as the caretaker to speak with the professionals involved in your loved ones care, including any professionals, doctors, or hospice workers or nurses. It needs to be specifically asked what to expect as the patient's condition progresses. As scary as it might be to ask certain questions, your imagination and fears are often worse, by asking you can prepare both emotionally and implement a care plan to deal with the worst case scenario. If you are scared you cannot possibly provide the care you need to for your loved one, whether you are simply not physically strong enough to help them sit up or assist them with toileting needs; or you are scared that you don't know how to work any machines or equipment they might need, it is best to get the answers to be comfortable, and if you cannot manage on your own, inquiry needs to be made about what to do in an emergency.

Just because the person is still living does not mean there is not reason to grieve. You have lost companionship, perhaps if you are caring for your spouse, this person can longer provide for you physically or financially or care for your home, leaving you to pick up the slack and learn how to do these things yourself. Perhaps the sick loved one can no longer talk, understand others, are very forgetful or may not recognize you. The sick person may refuse to take medicine or acknowledge the problem. People may be quick to offer what they think is a solution, but they are not living in your shoes; they cannot offer a quick fix, even if they are well intentioned. Your family dynamic, for good and bad, is magnified and altered for the worse, all your emotional baggage is still there. Imagine if you always felt your opinions were ignored on insignificant matters, how stressful that is when you report a serious symptom to another family member and they dismiss it, or if your pleas to the ill person to eat or take medications are rebuffed. It is the rare ill person who is able, despite severe pain or disease progression, to remain balanced and appear appreciative for all of the efforts the caretaker is making to care for them. Often an ill person will ask for the family members who do not visit as much, making the caretaker who is expending so much effort feel they are not appreciated and that the missing person is actually the favorite or preferred. The ill persons depression, panic, pain or medications may cause them to say things that seem especially cruel or thoughtless, lashing out at the caretaker when they are actually angry at needing the care and the prospects that lay before them. When the caretaker is exhausted and could most use an encouraging word, a thank you, or an "I love you", the ill person often seems the least appreciative. Both yours and the ill persons' personality flaws and emotional baggage will not evaporate in a long term care situation, they will likely intensify when very little can take your mind off the issues at hand. The caretaker will feel more isolated than ever. It is important to speak with someone specifically about your grief, not troubleshoot the health problems. They don't need to be practitioners or have been a caretaker, although that helps they just need to listen.

Since you are likely grieving in some manner, it is natural to feel some of the five stages of grief or loss, such as anger. You are losing a lifestyle, you are possibly losing someone, and the job of caring for them seems never ending, the financial, physical, and emotion burden seems never ending. Meanwhile, you are not able to attend to your own life or family, and in the case of extended care, your job and career suffers. Perhaps goals and plans of family members are altered, such as a lifelong dream of a child attending a certain college may be derailed by the stress and circumstances. You may be making huge sacrifices that seem to barely make a dent in the problem. Yet you are required to push all that aside to focus on the task that needs to be done - being a caretaker - but your emotions are still inside you and left unaddressed.

Depression is another stage of grief; it is reasonable to consult with a professional for help. Even if you are not naturally inclined to seek mental health care, this is an exceptional situation, and while you may indeed normally be able to work this sort of thing out yourself, you may be compromising the level of care you are giving your loved one when you are depressed and grieving, so time may be of the essence and require the assistance of a professional whether to listen to your problems or help you locate resources for assistance. A professional can look at the family dynamic and help you develop a plan so that you may be able to help you confront other less helpful family members, asking help to bear the load to take a turn taking care, to pitch in financially, even to run more errands for you or baby-sit in order to assist with the collective effort to care for this ill family member. Again, family dynamics are at play, the person who often plans all the family events and does all the work at family gatherings and parties in probably likely to end up with all the care giving responsibility when it should be a group effort. Everyone pitching in is often better for the one needing care as well. So even if mental health care just rubs you the wrong way, or if you don't feel you are clinically or dangerously depressed, you are bucking against the tide to try to make your extended family change life long personality traits and change the dynamic of your family, you could likely use some help from an outside source to handle the matter in a way that is most productive. If you are depressed, you have reason to be, and it will not improve unless the ill person gets dramatically better, so there is no "snapping out of it", you will need to do something proactive. It is not selfish to think of this aspect of your own needs at this stage of care giving.

It is impossible to handle every task well, even if you are a professional caretaker. Professional caretakers may know what to do in an emergency, but they are not faced with caring for their own loved ones and making decisions and trying to assess the best course of action based on knowledge of that person. But your ability to handle all of the care taking plus all of the responsibilities of your normal life can leave you feeling helpless. A professional may seem to handle flare-ups or emergency care matters well, but they do not do all of it: someone else does the cleaning, the cooking, the paperwork, the administrative tasks, and everything else associated with in facility care. In this case, YOU, the caregiver, are doing all of these tasks and more. No wonder you do not always know what to do. Also, the doctor or nurse does not have a history, for good or bad, with that person, and can just present the clinical response. It is easy to dismiss the admonitions of a family member when they would listen to a doctor or nurse. If a nurse or doctor was doing a task you the caretaker are responsible for, they would not be worried about unduly offending someone with the need to do something and move on to the next patient, it is just part of their day. But you are there day after day, you are bound to say or do something that you regret. Do not let this fester, if you said or did something you regret or that offended the ill person, likely saying "I'm sorry" will make you and your patient feel better. If the patient chose to remain offended, at least you will not regret leaving a problem uncorrected, and should know the person is likely exhausted and stressed by their condition. While a medical professional might have more knowledge of how to provide care, like them, you can only do your best. Stress can compromise your own health, it is important not to skimp on caring for your own health and diet, sleep when you can, even 20 minutes naps can be refreshing. Exercise throughout the day even in small increments, such as gentle stretching, simple arm exercises with hand weights or yoga that can be done even when sitting with a sick person or watching television and can help you build physical strength to stay healthy and build strength and stamina.

Care taking is an overwhelming emotional and financial task. It is physically draining and can consume your life for years. It is also a kind and loving act that allows the ill person to be at home in familiar surroundings. To whatever degree one is able to emotionally, physically and financially cope with being a caretaker is a true expression of love and compassion.