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FOR ILL PARENTS

Seek Practical and Emotional Support

  • Create a support network. The psychological and physical benefits of having a strong support network are well established. Maintain roles that are important to you but recognize that letting go of part or all of your responsibilities and delegating them to others for a time might help you return to health faster.

  • Get a coordinator. Ask several people to rotate being a coordinator of volunteers so you only have to speak to one or two people about your needs. The coordinator of the week or month buffers you from people asking what they can do, delegates the tasks, and is able to say “no thank you” gently, freeing you to focus on healing and on spending time with your children and intimates. The coordinator can set up a meeting with or without your presence to identify and schedule the various tasks and roles. Refer friends who want to help to Share the Care: www.sharethecare.org. See Resource Guide: Links to resources for caregivers.

  • Get an advocate. Ask for assistance in navigating the medical system, finding the right doctors, researching treatment options, making treatment decisions, and accompanying you to medical appointments. Once you commit to your doctors and a program, you will feel some relief.

Communicate with others in new ways

Use one of the free web sitesto communicate with family and friends:www.supportcircle.com; www.caringbridge.org; www.carepages.com

You can have someone post updates on your condition and needs, and you can receive loving messages and offers of help. You can also use the sites to make journal or blog entries

Use a special free web site to have someone coordinate meals, transportation, visits and other needs: www.lotsahelpinghands.com

Send a Letter or Circulate a List of Ways to Help You and Your Family

Send a Letter

Write a letter to your friends and family thanking them for being there for you and telling them how they can support you and your children.

One mother found this to be a simple and effective way to make her wishes known while getting help for her family as she prepared to go into the hospital for a stem cell rescue. Use her letter for ideas about how to express your own needs and wishes for whatever situation you happen to be facing. Write it (or dictate to a friend) in your own personal style. Ask a friend to send it for you by e-mail or snail mail to the people in your address book.

(All names and identifiers have been changed in this Sample Letter.)

Dear Friends,

You have all been so wonderfully supportive to me and my family over the past 11 months (!) as we have been battling my breast cancer. I am so grateful for, and appreciative of, all you’ve offered us: from food to prayer, playdates to car pooling, driving me to, and keeping me company at, appointments, and now some of you are even offering me your blood. I am overwhelmed by your generosity and support.

Now as I face the next challenge, the stem cell rescue (AKA bone marrow transplant), you are again offering your support and assistance. Since you are generally all saying “Let me know what I can do,” I thought it might be helpful to you if I gave you a little background and also if I made a list of some of the things I need and you can choose something you’d prefer. This also takes a big communication/coordination burden off of me. I hope nobody finds this note too tacky.

I am scheduled to go into “Mercy Hospital” in San Francisco beginning June 12 and I will be there for approximately 4 weeks. After being discharged I will have 1-2 months of fairly intense convalescence at home.

What will help (in no particular order):
Visitors - I can receive visitors who are certain that they are completely healthy since I will be immune compromised. Some precautions such as hand washing, gowns, etc. will be required. I am told that my energy level may be low at times so it is a good idea to check before coming to visit. But please don’t avoid visiting for fear of tiring me. I will want company to help pass the time, I just wouldn’t want anyone driving over to find me on an off day.

Jim [her older son] will be able to come in and visit. Jody [her younger child] will only be able to see me through the glass, and we can speak (loudly!) through the glass, too. Sometimes it might be helpful if someone can bring Jim along, or perhaps drive him home if someone else has dropped him off.

Meals - This is being coordinated by SS. She will be scheduling dates and times. She will also be able to provide some meal suggestions/preferences.

Checking-in - If you want to check and see how I am doing, BF and SS have offered to be available to provide updates. This will help relieve some of the pressure on Howard [her husband]. However, please don’t in anyway construe this as meaning you shouldn’t call Howard to see how HE is doing, just say hi, or whatever. He will need your support.

Playdates - I think Jim will need some “escape” time so playdates out of the house would be great. I don’t want him running somewhere every day but maybe one afternoon and one weekend day and/or sleepover per week would be nice. SS and Howard will coordinate that after I am in the hospital, or you can set something up with me before. And, if anyone is brave enough to try keeping Jody for a few hours I’m sure there will be times Howard could use a break.

Videos - When I am in the hospital I will have a VCR available. If you have any good tapes I can borrow or that you can recommend, please let me know. I prefer to stay away from real “weepers” as I don’t need to get depressed. Light comedies, mysteries, or adventures etc. would be preferred. It doesn’t have to be intellectual or Oscar material, just something to pass the time. From what I understand my concentration power won’t be at its highest. Please put your name on anything you loan me, or remind me. Remembering is likely to be a problem.

Books - If you can loan or recommend any good books (fiction, light as per videos above) let me know. While I am interested in hearing about inspirational books, tapes, etc. please don’t bring me any as I already have a huge backlog to catch-up on.

Prayers - If it isn’t too much to ask, also please let me know of your prayers. I really think it helps me to know.

Flowers, Plants and Food - These things (and other potential germ carriers) can’t be brought into my hospital room.

Again, thank you for everything. Without your help I can’t imagine we’d have made it this far.

Sincerely,

Circulate a list of ways to help

Here’s a list written by a mother living with cancer and children. It was brought to us by a mother in one of our support groups. The author is anonymous. Edit her list; make it your own. Ask someone to circulate it via e-mail or snail mail.

Sample List : I’m Sick -- Here’s How to Help!

  1. COOK A DINNER FOR MY FAMILY, but offer a choice of two courses; bring it in disposable containers or marked pots.
    • A choice of two because one week, we had tuna noodle casserole four nights in a row from well-meaning friends
    • If I can’t return your casserole, I will cry at my powerlessness and confusion.

  2. BAKE HOMEMADE COOKIES ... or brownies and bring them frozen so I can have the delight of sending fresh cookies off in a lunchbox the next morning and enjoy the fun of feeling like a mamma!

  3. MAKE YOUR OFFER SPECIFIC. Say, “I want to come over Monday at 3:00 to bake cookies or clean your pantry shelf, or whatever. If you say, “Call me any time for anything,” I won’t know what you want to do or when you are free . . . so I probably won’t ask.

  4. OFFER TO BABYSIT -- even if my husband (or partner) and I stay home. This gives us the freedom of a private adult life in a place my illness can cope with.

  5. HELP WITH HOLIDAYS, BIRTHDAYS, AND ANNIVERSARIES. Ask if there are any special gifts or cards or wrapping papers you could pick up for me. How many times I have wanted to give my husband a special “Thank you” card or put up a holiday decoration, but have been unable!

  6. HELP MY CHILDREN ATTEND BIRTHDAY PARTIES by bringing some pre-wrapped children’s birthday party gifts to our home for future use.

  7. CALL BEFORE YOU VISIT, but drop by for 20 minutes when you can. Don’t assume sickness requires rest at the expense of communication. (Loneliness is the great interrupter of sleep.) A spur-of-the-moment visit can be dissuaded with hurt feelings. But, if I plan and look ahead for your visit for weeks and then you must cancel, I will feel more ill and more debilitated than before.

  8. ASK ME WHO YOU KNOW THAT I MIGHT LIKE TO SEE AND BRING THEM BY. Often I am too shy to approach a friend on my own. My whole ife consists of asking favors, and I may just be too tired to make social requests too.

  9. TAKE SNAPSHOTS OF MY CHILDREN over the months. This gives me a feeling that there are permanent records of the temporary happenings I must miss.

  10. OFFER TO RUN TWO MEANINGLESS ERRANDS A WEEK FOR OUR FAMILY. The small stuff like no hair ribbons, or cologne, or clean suits fall by the wayside otherwise.

  11. ALLOW ME TO FEEL SAD, or prepare for the worst. One of the most difficult problems of serious illness is that everyone wants to encourage the patient; but sometimes, having the luxury of a good cry with a good friend who will allow it lets the tension escape -- once the dam has broken. I have one friend who lets me call her when I feel sad or like giving up or just lonely -- and by the time I finish dialing her number and she answers “hello”, the fear is gone. Sometimes, the greater part of cure is the release of fear.

  12. EVEN IF THE JOKE IS TERRIBLE, TELL IT! Share your humor. Bring Reader’s Digest and read it aloud. Describe what is funny out there. It may not tickle my ribs today, but tomorrow -- I may relish it! Speak to the part of me that is more alive than dead, for that is the real me.

  13. TOUCH ME. The isolation of being an invalid makes the power of love sweeter.

  14. OFFER TO WATCH TV WITH ME some afternoon when an old movie is on. Bring a book or magazine in case I fall asleep. This gives me the feleing that my company is still enjoyable without the responsibility of entertaining you.

  15. SAY THE WORD CANCER AROUND ME and talk about the real life you are living. This helps me feel less like an untouchable and like I am still involved with the world of normalcy. One of the hardest things about being an invalid is the problem of conversation with my husband. If you don’t talk to me about the life outside, I am left with only illness and TV to talk about with him, and this is hard.

  16. TELL ME HOW GREAT I LOOK considering what I’m going through. I know I look sick, but I still need to feel honestly attractive.

  17. ENCOURAGE YOUR HUSBAND TO COME OVER TO VISIT MY HUSBAND in the evenings. One of the greatest gifts I have is my husband; and yet, my illness has eliminated many of his pleasures. How happy I am when I hear him laughing with a friend in his shop or cheering Monday night football and popping popcorn with a pal!

  18. PRAY FOR ME and say so. The fact that you have faith gives me faith.

  19. TALK TO ME OF THE FUTURE. Next week, next year, ten or twenty years! The power of planning is incredible. Talk to me of my baby’s senior graduation and I can get through next week. Bring by travel folders for my silver anniversary trip, or discuss hairstyles for when my hair grows back in. If you look ahead, I can too.

Write a letter to the teachers at your children’s schools and to other parents

  • Let them know what’s going on
  • Ask them to pay special attention to your children and let you know if they need extra help
  • If you believe that they can do this sensitively and with respect for your values and needs, ask them to talk with your children’s schoolmates and friends about your illness—for example, to tell them that your illness is not contagious or not to leave your child out of social activities

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