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What to expect as a spouse or loved one who will be caregiver
When you first find out that your wife or husband has cancer you will not understand the full impact on your entire future. And if it is a serious form of cancer it will require a full-on fight and your attention. Expect that: 1. You will have to devote all your time to caring for him or her. Your spouse is your other half and this is where your love comes in. 2. You will have to be extremely patient 3. You will have to understand that your spouse or loved might have lapses of memory, might ask you questions that make no sense or imagine things. You will have to be totally understanding, non-contradictory and hide your frustration. Do not argue or correct anything. If your wife states that you are now in Mexico while you are actually in New York then you are in Mexico. 4. You will cook, you will clean, you will shop, you will do laundry, you will do everything in the home. 5. You will be the driver to chemo, to oncologist, to radiation to every medical need. 6. Its your job to learn about the type of cancer and talk to all the doctors, get second and third opinions and do everything to find out how to make your other half happy, healthy and alive. 7. You will wake up in the middle of the night hoping that the moment never comes when cancer wins. You will try for hours to forget that thought and fall asleep while wiping away the tears. 8. You will learn every facial expression and nuance on your spouses face so that you can recognize when he is in pain, when she is hungry, when he is having amemory flashback, when he is cold, when she is hot. 9.You will learn to instantly pay attention to every move. While drive-by relatives watch TV and don't notice your loved one's signals you will jump up and act. 10. You will learn to be strong the first time your spouse does not recognize the room you are in, your favorite picture on the wall or looks with a blank stare at your face trying to place it. You will learn to be strong...after you cry many times. 11. As your fight progresses you will get very frustrated by well meaning relatives who will drive you nuts with suggestions while not realizing that you've been doing this for months and that you tried almost everything there is. They will stand next to you and say "have you tried..." or "you should..." Resist the urge to hit them with the closest piece of furniture. You have these options: 1. ignore them; 2. argue with them; 3. kill them; 4. pretend its great advice and that you are taking it; 5. agree and say you already tried. In some cases the kids will come over and try to take over. Remember, they are all here for the weekend, be gone in a couple of days and you will be able to get back to the routing you've set up that works well for your spouse. And you could use some relief and time for yourself. The problem is that they never will be you and never pay the kind of attention and undestand the signals like you do. 12. If your spouse goes to the hospital get to know the shift changes and the nurses. Most hospitals hae a 12 hour shift then a news set of nurses comes on. You will have to educate this new set every 12 hours about your spouses conditions, signs of pain, symptoms, pain management etc. Some nurses are great some are not. Some read the charts some read the horoscope. You will make sure they give the right pills at the right time, they give your spouse the proper pain management, they change the sheets, the diapers. Get each shift a box of Sees candy. It helps a lot. 13. You will get angry and frustrated at doctors who don't talk to each other, at doctors who don't explain what to expect, at doctors who use terms such as "quality of life" and not defining what they mean by "quality" or "life" and at doctors who are afraid to say anything for rear of being sued. 14. You will get angry at doctors who are not aggressive enough to find new ways to treat the cancer and who just do the routine stuff without looking at ways to attack this partical form of cancer. Just mainatining is not good enough. 15. You will get angry at $2000 ambulance bills to go just one block, at $90,000 ICU stays for 4 days, at our medical system that milks hard working individuals. 16 You will wonder why we spend trillions of dollars overseas to help other countries, to fight wars when we have the biggest terrorist within right here at home attacking us - cancer - that kills more of our citizens than any terrorist ever had. You ask yourself through the tears as your spouse is lying in bed for days motionless why some of that money could not be used to kill that terrorist that is killing your spouse. |
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