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For Partners and
Support Persons

 

Adjustments Will Have to be Made
The caregiver (that is you) needs to understand that the patient may make major attitudinal changes from the way he/she was before the illness. Things change in their order of importance. If you are dealing with a form of cancer that changes rapidly, prepare to change your routine frequently. It will be helpful to maintain open discussions with the patient while they are down, or at least for as long as possible, so he/she might be aware of their own changes.

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.


Take Care Of Yourself
Always remember that you cannot be a Super man/woman. If you were to become ill, you would not be able to help the patient.

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.


Allow Others To Help
If you are the family's primary financial provider, you may have a "full plate" right now. Ask others for help. Allow others to help. Accept offers of help from others. Find things that others can do to help you and have them ready for when friends ask, because they will. People feel much better when they help others. Is that not one of the reasons that you are currently helping someone?

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.


Become More Knowledgeable
Try to learn all you can about the patient's particular type of cancer. It helps you to understand some of what they are dealing with. Also, it will allow you to do more to make the patient comfortable.


Guard Against Opportunistic Diseases
Chemotherapy often drives a patient's white cell count down to dangerously low levels, and they are very vulnerable to diseases. You both need to stay away from parties, theaters, shopping, etc. Take small drives on pretty days. Remember that the patient may not feel like doing anything, so listen to their desires. It is not just a simple matter of their mood that is involved here, they are very weak and often in pain. However, it might do you a world of good to take that drive, by yourself, or with a friend, just for the sake of your own sanity. If you come down with a cold, you might consider staying with family or friends for a few days. An alternative caregiver plan might be appropriate for just these occasions.


Dietary Adjustments
You may want to avoid favorite foods during treatments. Taste buds are affected by cancer treatment, and after the patient is well, they have a real problem with their old favorites, if eating them reminds them of the cancer treatments. While they are ill, try new recipes, or provide foods that the patient has not liked in the past. They just might like them now.

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.


Facing Death?
Take your cue from the patient as to the amount of information you give them about their prognosis. Do not force the issue about someone's mortality. When they are ready to know, they will ask. They will determine when to accept the information about their prognosis.

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).


Visits To The Doctor's Office
Before going to a doctor's appointment, make a list of any questions that either of you might have. Keep a tablet and a pencil near where you sit or sleep, and write down questions the moment they come to your mind. Otherwise, you will probably forget some of them when you get to the doctor's office. Doctor's are busy people, and they tend to dash in and back out quickly on office visits.

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.


Dealing With Pain and Medications
Many patients have a fear of getting addicted to pain medications. Pain inhibits healing. The body needs to recover from the chemotherapy, and fight cancer at the same time. Medications can also alleviate most of the side effects of the chemotherapy (nausea, diarrhea, bone pain, etc), and are available in many abstracts to fit the degree of the problem. Consult the doctor or chemotherapy nurse, and be sure to tell them how the medicine is working (or not).

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.


Rest, Rest and More Rest
Encourage the patient to rest. Afternoon naps may alleviate some of the problems of the side effects of the drug therapy. Expect the patient to change sleeping habits. Sleep hours may become extended, as their need for more rest increases. Help them to pace themselves so that they can keep their activities and resting time balanced. Patients tend to over-extend themselves. Chemotherapy often affects the body more than the disease does, in regard to the body's energy levels.

Present a Positive Attitude
Do not be negative regarding the changes. Take them in stride. Complaining about them to the patient is a negative mode that you should avoid. They have enough to worry about, with the illness and their apprehension about their longevity. They do not need to hear any comments that might sound accusatory, like guilt being assigned to them. They already feel badly enough for not "doing their share" at home.

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.

Take care to not totally focus on the positive issues, if it prevents the patient the opportunity to express their fears and concerns. They need to feel totally free to speak with you and confide in you and express any of their negative emotions. They need to hear positives from you, but they need to be able to talk about the negatives that they have in their own minds.

Etc.
Listen to advice from well meaning people and then do whatever you feel that you must do. You know the situation better than any one else does.

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.