Living a Healthy Life with Chronic Pain (51 page)

From our research, we have learned that people often have a more difficult time talking to their doctors about their wishes surrounding death than to their families. In fact, only a very small percentage of people who have written DPAs for health care or other advance directives ever share these with their physician.

Even though it is difficult, it is important to talk with your doctor about your preferences. First, you need to be sure that your doctor’s values are similar to yours. If they are not, it may be difficult for him or her to carry out your wishes. Second, your doctor needs to know what you
want. This allows him or her to take appropriate actions such as writing orders to resuscitate or not to use mechanical resuscitation. Third, your doctor needs to know who your agent or substitute decision maker is and how to contact this person. If an important decision has to be made and your wishes are to be followed, the doctor must talk with your agent.

As surprising as it may seem, many physicians find it hard to talk to their patients about their end-of-life wishes. After all, doctors are in the business of keeping people alive and they don’t like to think about their patients dying. On the other hand, most doctors want their patients to have durable powers of attorney for health care. These documents relieve both you and your doctor from pressure and worry. Therefore, be sure to give your doctor a copy of your DPA for health care so that it can become a permanent part of your medical record.

Plan a time with your doctor when you can discuss your wishes. This should not be a side conversation at the end of a regular appointment. Rather, start a visit by saying, “I want a few minutes to discuss my wishes in the event of a serious problem or impending death.” When put this way, most doctors will make time to talk with you. If the doctor says there is not enough time to discuss these matters, ask when you can make another appointment to do so. This is a situation where you may need to be a little assertive. Sometimes a doctor, like your family members or friends, might say, “Oh, you don’t have to worry about that; let me do it,” or “We’ll worry about that when the time comes.” Again, take the initiative, using an “I” message to communicate that this is important to you and that you do not want to put off the discussion.

Sometimes doctors do not want to worry you. They think they are doing you a favor by not describing all the unpleasant things that might happen to you in case of serious problems. You can help your doctor by telling him or her that having control and making decisions about your future will ease your mind. Not knowing or not being clear on what will happen is more worrisome than being faced with the facts, unpleasant as they may be, and dealing with them.

If you still feel it could be hard to talk with your doctor, bring your agent with you when you have this discussion. The agent can facilitate the discussion and at the same time make your doctor’s acquaintance. It opens the lines of communication so that if your agent and physician have to act to carry out your wishes, they can do so with few problems. This also gives everyone a chance to clarify any misunderstandings.

If you aren’t able to talk with your doctor, it is still important that he or she receive a copy of your DPA for health care for your medical record. When you go the hospital, be sure the hospital has a copy of your DPA as well. If you cannot bring it, be sure your agent knows to do so. This is important, as your doctor may not be in charge of your care in the hospital.

Now that you have done all the important things, the hard work is over. However, remember that you can change your mind at any time. Your agent may no longer be available, or your wishes might change. Be sure to keep your DPA for health care updated. Like any legal document, it can be revoked or changed at any time. The decisions you make today are not forever.

Making your wishes known about how you want to be treated in case of serious or life-threatening illness is one of the most important tasks of self-management. The best way to do this is to prepare a durable power of attorney for health care and share it with your family, close friends, and physician.

To learn more about the topics discussed in this chapter, we suggest that you explore the following resources:

Atkinson, Jacqueline M.
Advance Directives in Mental Health: Theory, Practice and Ethics
.

London: Jessica Kingsley Publishers, 2007. Blaufus, Jane.
With the Stroke of a Pen: Claim Your Life
. Ancaster, Ont.: Blaufus Group, 2011.

Callahan, Maggie, and Patricia Kelley.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
. New York: Simon & Schuster, 2012.

Doukas, David John, and William Reichel.
Planning for Uncertainty: Living Wills and Other Advance Directives for You and Your Family
, 2nd ed. Baltimore: John Hopkins University Press, 2007.

Godkin, M. Dianne.
Living Will, Living Well: Reflections on Preparing an Advance Directive
. Edmonton: University of Alberta Press, 2008.

Kübler-Ross, Elisabeth.
On Death and Dying
. New York: Scribner, 2014.

Kuhl, David.
Facing Death, Embracing Life: Understanding What Dying People Want
. Toronto: Doubleday Canada, 2006.

Kurz, Gary.
Cold Noses at the Pearly Gates: A Book of Hope for Those Who Have Lost a Pet
. New York: Citadel Press, 2008.

Long, Laurie Ecklund.
My Life in a Box: A Life Organizer
, 4th ed. Fresno, Calif.: AGL, 2010.

Olick, Robert S.
Taking Advance Directives Seriously: Prospective Autonomy and Decisions Near the End of Life
. Washington, D.C.: Georgetown University Press, 2001.

Pettus, Mark C.
The Savvy Patient: The Ultimate Advocate for Quality Health Care
. Sterling, Va.: Capital Books, 2004.

Sitarz, Daniel.
Advance Health Care Directives Simplified
. Carbondale, Ill.: Nova, 2007.

Stolp, Hans.
When a Loved One Dies: How to Go On After Saying Goodbye
. Hampshire, England: O Books, 2005.

Wilkinson, James A.
A Family Caregiver’s Guide to Planning and Decision Making for the Elderly
. Minneapolis, Minn.: Fairview, 1999

T
HE FOLLOWING HELPFUL HINTS
are alternative ways to approach daily activities that may be difficult or impossible for you to do. We’ll start with the first thing you do in the morning: getting out of bed. Many people with chronic pain experience stiffness after lying in bed all night and find it difficult to get moving without experiencing even more pain. We’ll look at helpful ways to approach this morning routine, and then we’ll move on to other common activities throughout the day. Many of these hints may help you solve some of your everyday problems with chronic pain.

1.   Before getting out of bed in the morning, try doing a few simple stretches. This will begin to loosen up stiff muscles as well as get your blood circulating.

2.   Getting out of bed can be a problem in itself. Try these tips:

3.   Instead of making the bed immediately, allow yourself time in the morning to relax over a cup of coffee or tea without trying to accomplish anything but waking up in a leisurely way. Then, make your bed just before taking your shower.

1. Prepare as much as you can the night before. For example, set up the coffeemaker so that all you have to do is hit the “on” switch. Set the table so it’s ready for breakfast when you wake up. Ask a family member to help.
   
2. If you find it difficult to prepare a large breakfast for your family, try ready-made healthy products: prepared fiber cereal, yogurt, fruit, nuts, whole-grain breads, etc.
   
3. Give yourself enough time in the morning to eat breakfast. Good nutrition is important, and feeding your body in the morning is especially important.
   

1. Sit on the edge of the bed to put on socks and pants.
   
2. If you have to stand to get certain clothes on, rest your body against a wall to maintain balance and distribute your weight.
   
3. Have a convenient place where you can sit down to put on your makeup or shave.
   
4. When brushing your teeth, stand upright. Bending over the sink puts a lot of pressure on your back.
   

1. Instead of making a proper bed, just pull the covers up.
   
2. Instead of cover sheets, blankets, and bedspread, consider buying a duvet (also called a comforter). It is lightweight, warm in winter and cool in summer, and takes only a second to straighten up so your bed is made in a flash.
   
3. Conserve your time and energy by following these tips:
   

4.   Remember, you don’t have to make the bed. Just shut the door to the bedroom. An unmade bed does not mean you are lazy but rather that you have placed your attention on other things that are more important to accomplish during the day. Consider making it only when you’ll have visitors or before going away for any length of time, such as a weekend visit to a relative’s house.

1. If you must sit all day, make sure your chair is the proper height from the floor. Your knees should be bent at slightly more than a 90 degree angle and your feet should rest comfortably flat on the floor. A small, tilted footrest may be useful to take strain off your knees and back.
   
2. Do not sit hunched over your desk. Relax your shoulders and neck. It is important to keep your neck in alignment with your spine.
   
3. If you work at a computer, it is crucial to have a chair with appropriate armrests and back and neck support. Talk to your employer about evaluating your workstation for comfort and efficiency.
   
4. It is okay to cross your legs while sitting. When you feel tired, simply cross one leg over the other for several minutes, then switch sides.
   
5. If you sit at a desk all day, take a few minutes each hour to stand up and walk around. Get some water, go make photocopies, or just walk around your work area—anything to get moving for a little while.
   
6. If you must lift objects at work, make sure you bend from the hips and knees. Bending this way puts most of the strain on the large muscles of your legs rather than the small muscles of your back.
   
7. If you stand over a worktable all day, find a stool to sit on that will permit you to work at the same level as standing. You can also stand on a cushioned mat, which will ease the strain on feet and knees.
   
8. Make sure your worktable is at a level that will permit your arms to fall naturally on the top. If the work surface is too high or too low, it will cause increased strain.
   
9. To help take strain off your back, stand with one leg raised slightly off the ground, resting on a ledge. Alternate legs when you tire of one position.
   

1. The entire house does not need to be cleaned in one day. Break up the chores so you can do the work over several days.
   
2. Gently wheel your vacuum from the storage area, don’t lift it.
   
3. Bend at the knees when you need to reach something on the floor. If you have knee problems, talk with your health care provider or health supply store about purchasing a “reacher” so you don’t have to bend over.
   
4. When ironing, place one foot on a small stool several inches off the ground. After a while, alternate feet.
   
5. Sit when you feel you need to. You can do such chores as loading the dishwasher from a sitting position.
   
6. Store frequently used items at waist-high level.
   
7. Organize your work to avoid multiple trips up and down the stairs. For example, clean the downstairs bathroom on one day and the upstairs bathroom on another.
   
8. Try not to rush while working. Take your time to do the work, and take rest breaks.
   
9. Place the laundry basket on a table next to the washing machine so you do not have to bend over to sort the clothes.
   
10. Put an extension on your broom or duster so you do not have to strain to reach hardto-get places.
    
11. Make housekeeping a family project and share responsibility.
    

1. Look into devices that can make your job quicker and easier, such as special utensils to help open jars, peel potatoes, etc. There are also kitchen implements with large grips that can reduce discomfort.
   
2. While standing in the kitchen, open the cupboard door below you and place a foot on the ledge to take the strain off your back. Alternate feet when you feel the need.
   
3. Sit down to do tasks if that is more comfortable—but remember to get up and walk around.
   
4. When you bring ice cream home from the store, place individual scoops into small plastic bags and refreeze it. Ice cream is usually softer and easier to scoop when it’s fresh from the store and hasn’t been in the freezer for a while.
   
5. When making cookies, make two batches of dough—one for now and one to freeze for another time.
   
6. On days when you are feeling good, prepare double recipes for dinner and freeze half for the days when you don’t feel up to cooking.
   
7. Roll out pie crust on the kitchen counter, which is higher than your table.
   
8. Be sure to set time aside to relax between jobs in the kitchen.
   

1. Have a list of needed items in the order they appear in your local stores to avoid taking extra steps for forgotten items.
   
2. At the checkout, distribute your purchased items evenly between two bags so that no bag is too heavy.
   
3. Carry bags close to your body.
   
4. Avoid plastic shopping bags if you can. They put more strain on your arms, shoulders, and back than brown bags that you carry in your arms, close to your chest.
   
5. Make extra trips to the car with several lighter packages rather than carry fewer heavy packages.
   
6. Avoid placing grocery bags in the back seat of your car. It is too difficult to lift them out from that position. Instead, put grocery bags in the trunk.
   
7. Don’t hesitate to ask store employees for assistance bringing your bags to the car.
   

1. Make sure your seat and headrest are in the proper position. Adjust your seat so you can reach the pedals comfortably. You don’t want to be leaning too far back or forward; rather, your neck should be gently balanced on the top of your spine.
   
2. Place a small pillow in the small of your back to give added support to your back.
   
3. If you are going to be driving for a long period of time, allow enough time for frequent stops to stretch.
   

1. If you plan a vacation, make sure you allow enough time to rest if it is a long trip.
   
2. If you get tired when travelling by car, have someone else do the driving while you relax in the passenger or back seat.
   
3. When dining out, wear comfortable clothes and don’t be shy to take a back support with you if you need one. The same goes for going out to movies.
   
4. Entertaining at home should be planned well enough in advance so you do not do all your chores in one day. Spread your chores over several days, and make food that is easy to prepare and serve.
   
5. When doing activities like shopping or sightseeing, take time to sit down and relax for a few minutes every so often. It will actually increase the time you feel you are able to be on your feet.
   
6. Work at building up your tolerance over a long period of time so you can pursue hobbies you enjoy—woodworking, sewing, gardening, sports, whatever.
   

1. If you have back trouble, lie on your back and place a small pillow under your knees to take the pressure off your back. But be careful. Over time, this may give you trouble with your knees, so alternate this position with other positions, such as lying on your side.
   
2. When lying on your side, have both knees slightly bent. Try putting a pillow between your knees for extra comfort.
   
3. If you have neck problems, consider trying a special neck pillow. This pillow is higher under your neck than your head. It will keep your neck in the proper position with the rest of your spine while you are sleeping.
   
4. Try to avoid sleeping on your stomach; it puts strain on your spine.
   

By recognizing the challenges you face due to chronic pain, trying different ways to work around them, and maintaining a positive attitude, you will find that anything is possible. You can live a healthy life with chronic pain!