What TO say and do for parents of terminally-ill children…

My friend Sharon has been living with chronically-ill children for eighteen years now. She, more than anyone I personally know, can completely relate to our situation, and she offered the following advice to me right after Tori was diagnosed. I read it again last night and realized just how right she is.

Since so many ask how they can help parents like us, I wanted to share her wisdom. We are so thankful for the support and help we have received from family, friends, and even strangers!

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Support is important, but the one thing I personally hate is pity – PLEASE do not pity someone – please do not. Feel the hurt that they feel, feel the pain that they feel;  but, my son is still my son — I would never give him back.  I have had him for almost 18 years – others I know (unfortunately too many to name) have lost their kids before they reached 18 – BUT they loved every minute of it .

Now – WHAT can you do – or what helps?

1. Extended family and friends play an important and big role in helping children and their immediate families deal with a serious illness.

2. Listen, really listen, to your friend or family member. It’s important for people to tell their story – it helps with processing traumatic situations. So let them talk. Be a good listener. Even if you have no clue about the medical terms they are throwing around – feel free to ask.

3. Send meals. Remember that while they’re in hospitals, the food they have available is usually not great OR healthy. Try to plan for fresh foods, easy to heat up, easy to clean up or have something delivered, like pizza or Chinese.

4. Offer to babysit other children during appointments or accompany them to the appointment if they need someone to sit with them. 

5. Be available to help out in the middle of the night for ER trips and other emergencies.

6. Everyone wants to help immediately, but in a long-term illness, help will be needed for the long term. People get burned out easily so spread out the help so you can be strong for them. Remember, she will still need you in a month, three months, six months, even next year.

7. Offer (don’t just do it) to do things for them that require clearer thinking: contacting school or work, or other friends and family, etc.

8. Offer to be the person to gather mail (either at their house or set up a post office box if they want to keep their address private) and deliver it to them.

9. Use common sense when visiting. If you’ve been sick or feel like you’re getting sick, stay away. If your kid’s been sick, stay away. Your germs can make a compromised child VERY ill.

10. Help set up a notebook/Binder/flash drive to keep important medical information in or scan them for her and put them in a file or flash drive (I do this). A copy of all the paperwork from discharges, diagnoses, medication changes is so helpful and can be taken to all appointments or travels. If they’re out of town and have to go to an ER or urgent care, they have all the information handy and treatment is easier and safer.

11. Research and summarize disease information available on support group websites or ask questions to which you do not know the answers.

12.Be calm and levelheaded for your friend, as at times they will not be able to think clearly, be it from being stressed or overtired…It is okay to be upset, but it helps them for you to be logical, orderly and levelheaded. It’s calming to them and helps them see things that they may not see with everything going on.

13. Offer to pick up medication at the pharmacy while you’re out. If you’re heading to the grocery store, call before and see if they need anything.

14. Gather folks to help clean and disinfect their home before they come home from the hospital, especially if there’s been surgery.

15. Offer to do an overnight stay and let them get some uninterrupted nighttime sleep. Sleeping in the day is fine, but there’s nothing quite like a good 6 hour stretch in the night to make a parent refreshed.

16. Make a gift bag of Lysol, Clorox, wipes, masks for the kid when in public, soaps, and hand sanitizer. When dealing with sick kids, you HAVE to be ultra clean all the time. A cold to you could mean death to a child with compromised immunity.

17. Offer to help with the household chores or pet care. Offer to pay for a cleaning service or dog sitter/walker.

18. Be willing to just sit in the waiting room with your friend. Just having another person present can be a huge stress reliever.

19. If you’re not local and want to help, gift cards are a great idea. Visa or AMEX gift cards can be used almost anywhere and are a good choice if you’re unsure of what stores are local. Starbucks/gas cards/Target/Walmart are also good bets. Mobile gift cards for apps on an iPad or iPod are good, too. If the kid is older, a basket of puzzles, word games, etc.

20. Cards. notes, are wonderful.  The person does not need to respond but they know you are thinking of them. A good gift is a pretty box or basket to keep the cards in. 

21. AND FINALLY, be there for the long term – not just now but several months and years – she will still need support then.

Now here are some thing that should not be done – my pet peeves. I know so many mean well – but try to avoid doing these things.

1. Remember that your friendship and support really matters – it may be a lifeline for your loved one. So, if you say you’re going to help, commit to it. Having someone back out when your child is sick can be more devastating than you can imagine (trust me, I know this all too well first hand – I lost way too many friends and learned who my “real” friends truly were).

2. Don’t visit without checking first, even if it’s something you’ve planned with them in advance. One rough night can lead to a day of exhaustion for everyone, and they might not be up to visitors.

3. Don’t visit if you’ve recently been sick, feel like you may be getting sick, or your child has been sick. Your germs can make someone with a weakened immune system very ill.

4. Don’t prolong the visit. Watch for cues from the parent or the child that it’s time to wrap things up.

5. Don’t say, “God won’t give you more than you can handle.” It implies that God had a role in the child becoming ill and may make your friend feel as though he or she is being punished. To be honest, this is a big one for me and I still have a hard time dealing with it. It does make one feel like you are being punished.

6. Do not send latex balloons to the hospital. Many people are allergic to the latex in balloons and almost all children’s hospitals are latex free – I know 2 of my boys are allergic to it.

7. Avoid sending flowers. Sure, they’re pretty, but the child won’t care. Worse, if the child’s immune system has been compromised, anything that could cause an allergic reaction or carries bacteria could be life-threatening.

8. Don’t take it personally if your friend doesn’t want to talk. The stress of being a caregiver is overwhelming. Sometimes the best thing to do is just sit there with your friend and let her vent, cry or just sit in silence. Often your presence is enough.

9. Don’t be afraid to reach out with thoughtful phone calls or e-mails, but remember the family is likely overwhelmed and may not be able to respond. But know the thought is appreciated.

10. Don’t give medical advice. You’re not a doctor and you’re certainly not familiar enough with the child’s illness to be making medical calls. Unless you have a chronically ill child you do not know how the parent is feeling. Unless you have been in the parents shoes do not say I know how you feel, as trust me, you do not.

11. Don’t tell them to “chin up” or “cheer up.” They are entitled to their feelings, which may or may not be comfortable for you.

12. Don’t tell horror stories and don’t compare your friend’s child to another who was seriously ill, too. It won’t make anyone feel better. Do not try to compare your child having tubes in his ears or the flu to an incurable disease. Sorry, but things like this will make me (or others) want to strangle you.

13. Unless your child has the exact same diagnosis or has had the same surgery or the like, DO NOT offer unsolicited medical advice.  

14. Do not offer unproven medical advice or opinions.  Do not say “if you do this it will cure your child! I know a parent whose kid was cured of cancer using this herb…” It is not helpful. The best advice you can give is offer to pray or help.

15. The phrases below are not cool. Don’t use ’em. Don’t say:

• “I know JUST how you feel.” (no, you don’t – unless you are in the same boat and, even then, EVERY child is different.)

• “I feel helpless.” (Imagine how your friend feels – exactly – rather be there)

• “You need to talk about it.” (NO I don’t – if we want to talk we will)

• “Here! This is what you should do. I heard about it on Oprah, Dr. Oz, the Doctors.” (who cares what they have to say? They are not my child’s doctor.)

• “I don’t know how you’re managing it all. I’d die if it were me.” (thoughtless! Again, it does not help. No, you would not die and yes, you would be able to deal – it is your child you would love them.  Just because my child has an incurable disease does not mean I love them any less – to be honest, I treasure every minute I am given with them.)

• “Everything is going to be fine.” (you do not know that – and usually not true.)

• “What’s the life expectancy with that?” (morbid! – yes, I may strangle you if you say this.)

Now what should you say instead:

• “Do you need to talk/feel like talking? I’m here to listen.” (doesn’t pressure them to talk right then, but the offer is there – often I would open up after a while. The parent needs to learn who is paying lip service and who really does care what happens to their child.

• How are you/child feeling today?” (since every day is different – and yes, things can change on a daily or hourly basis. As long as you are being sincere this is perfect and simple to do.

• Ask about the disease or diagnosis and maybe look it up so you know more – BUT, do not offer suggestions for treatment. Ask questions, remember the major issues and look them up.

• Talk about care and hope. Talk about how sweet and precious their child is and how much your love them. You should validate the seriousness of the illness by confirming that they are facing something very difficult.

• ” I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you.” Acknowledge that you know your friend is in pain without saying you understand what she is going through.

• Ask the parents how they are doing. After you ask “How are you?” and they respond “I’m fine.” – wait for the truth after they say that. I can tell if you really want to know how I am doing – like I am about to have a break down, or I want to cry or I want to go back in time, etc.

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Thank you, Sharon, for allowing me to share this here! I know it will help so many people!

5 thoughts on “What TO say and do for parents of terminally-ill children…

    • Thank-you sooooo much. My friend’s granddaughter (4yrs old )has inoperable brain cancer.. Prognosis is 6-9 months.

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  1. this is really, really helpful! sometimes it’s hard to know if what you’re saying is the right thing (or the wrong thing!) thank you for passing this on!

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  2. Wonderful post! When our baby was first diagnosed, I felt bad for adding “care packages” and “tokens or gifts” to the list of DONT’s. For our family, it was more “stuff” we would have to figure out how to manage as we moved from hospital to hospice and eventually the 3,500 miles back home. Financial and food gifts were SOOOOO helpful. It helped us just focus on our baby without worrying about getting bills paid or meals taken care of. Prayer support was amazing, too…and being allowed to have “normal” days where we talked about or laughed with friends over “normal” stuff that had nothing to do with our baby’s terminal diagnosis. I’m so grateful for the love you obviously have surrounding you, Tori & your whole family!
    ~~Laura

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