Adjustments Will Have to be Made
Be very careful about your behavior when you are around the patient. Anything that might have upset your loved one prior to the start of their treatments may have an accentuated effect now, due to the treatment or its side effects. If the patient used to be your "leaning post" where you would bring your problems, try not to do that now, because they are dealing with their own problems, and they are not as strong (either physically or emotionally) as they were before the illness.
Things around the house will not be the same, due to part of the household no longer being able to help out. It is okay if priorities change. Be flexible. Face the new situations in new ways. Being able to adapt to changes is a very good quality to have anyway.
You may feel you need to modify your schedule to enable you to provide what the patient needs. Most employers are sensitive to this special circumstance, and will work with you. Just remember that you are not the only person that can do your job at work, but you are very important at home.
The patient may not be able to answer your questions, be able to initiate selfcare, or tell you what they need, especially if the brain is affected by the tumor. You must learn to anticipate the patient's needs.
Radiation, Chemotherapy, and pain relief medications can all affect the patient physically. Hearing the diagnosis and the prognosis, and facing the change or temporary alteration of their career can cause a whole bunch of emotions that may never have existed before. All of these may add up to the fact that many people that face cancer make major changes in their lives. Nearly all of the issues in their lives are re-arranged as to the order of importance to them. Be cautious of encouraging what you may feel would be the "right" behavior for them. Many "side effects" occur during treatment that may also affect the patients' behavior.
Mental health is very important to your ability to cope. It takes a strong person to recognize one's own needs, and to seek help for them. You may become stressed and frustrated with the patient's manner of dealing with their disease. It helps to talk to others who have an understanding of what you are going through. Join a support group, or find a listener with whom you would derive comfort in talking to about your needs.
Find ways to express your stress and frustration. Do your type of exercise, pursue old, forgotten hobbies (or find new ones), research the illness that your loved one has, so that you might better understand the disease, and its effect on them. Do something from which you would derive pleasure.
Take care of yourself. Make time for yourself.
Try to find one person to handle billing issues. Those can definitely become a serious burden.
Get help with the house or yard chores, for both the patient and the caregiver. Your main responsibility is caring for the patient. Someone else can easily mow the yard, clean the house, or help with the cooking. The caregiver as well as the patient will more easily become exhausted from the extra load that they are carrying. Also, at times like these, small details around the house become very menial.
Friends and family are very concerned and want to make contact, but they do not want to "bother" the patient. Utilize e-mail, multiple "mailboxes" with the phone company, phone trees with friends and family, and maybe even a web page that can carry current photos, latest news, best times and best days to call, etc. These methods may help keep the telephone quieter to allow you and the patient to get some badly needed rest. Giving a descriptive narration of the latest news to multiple callers can be very draining so put it on a recording or type it onto a website.
You are only one person. Accept the help that is offered by family and friends.
When preparing foods, try to keep the cooking odors to a minimum (i.e.: exhaust fan, open window, etc). Smells can be very powerful memories. The mere smell or sight of certain foods may cause nausea or a loss of appetite.
When serving foods, serve small portions. The patient can always come back for a second helping. Too big of a serving may result in overeating. While this may be beneficial in causing much needed weight replacement and energy, it may also cause unnecessary nausea.
Spicy foods may not be tolerated too well. If they want a spicy old favorite, try a small amount to see if the body will cooperate with that choice. Prepare the food with only a very small quantity of the spice.
Don't make all of the decisions for the patient. Don't take away their autonomy. Allow then to keep as much control in their daily lives as they can. In situations such as this, decisions about our own personal lives and our own health care might be all that we have left... our last bit of control over our lives.
When it is obvious that life's end is near, it helps us to know that many patients need to know that they actually have 'permission' to pass on to their next phase. Recognize when they are seeking your support for what is to come. Death often comes after an anticipated visit from a loved one or they wait for an 'opportunity' when they know they will be alone (away from loved ones).
Make sure all of your questions are answered and that you understand the answers, before you leave the room. Doctors are working for the patient, so the patient should demand good "service" for their money.
When the patient goes to the doctor's office, he or she may not "hear" all of what the doctor says. It would help to have a second person in attendance at doctor visits. The caregiver could help in this way. The patient (and/or the caregiver) may be so stressed that they might only catch portions of what was said. Many times, each person in attendance hears something totally different than what the others heard, due to their 'mindset'. Bringing a tape recorder to the appointment and taping the discussion is very helpful, and many doctors encourage this. It often helps when you later discuss what had been said in the doctor's office. If there are differences of opinion, or you do not understand something that the doctor said, call the doctor for further clarification.
Check with the doctor or Chemotherapy nurse about pushing plenty of liquids. Have a variety of juices or drinks available and rotate through them to prevent getting "burned out" on any particular one. The drinks that are high in calories are a plus to keep body weight up.
Do not let the patient wait until pain sets in before they take pain medicine. The patient is much more comfortable if they do not wait until pain starts. It may be better to hand the patient their medication with a glass of water, for them to take immediately, than it is to rely on the patient to dose themselves.
Encourage positive activities, such as tapes or readings. Offer to read books aloud or bring home books on tapes. It can be comforting and very relaxing.
Encourage laughter. If they normally watched a lot of TV, search out comedies or reruns of old favorite shows. Enjoy them together. You may need to avoid news shows. They can be very depressing.
Never take away hope. You can be realistic to the point of assisting them in putting their affairs in order, but never take away hope. Miracles do happen, and always remember that no one is just a statistic.
Always remember that a
diagnosis of metastatic cancer is tougher than localized
cancer, but it is not always a death sentence.
Make the most of your time with the patient. These can be some of the best times of your lives.
Above all, keep hope alive. Allow the patient to accept the end of a fight, but until then, support them in their efforts to fight the battles.