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family members need to know...


KatieB

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Bookmark these Links!!

https://www.pparx.org/Intro.php

http://lungevity.org/l_community/viewtopic.php?t=33131

http://www.lotsahelpinghands.com/

These would be my fave 3 for newly diagnosed patients. They are all pertinent.

the first one is for financial assistance for pharmaceuticals, the second is Richs (Dadstimeon) links for EVERYTHING!! and the third is for setting up an assistance program where every friend and family member has a specific job to do!!!

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My advice to new family members is always - let the patient talk. I've seen so many people do the "oh don't talk like that" bit, mostly because they aren't comfortable talking about the worst of the 'what-if's'. But the patient needs to talk about that, so if they want to talk, let them talk. I let my sister know that very first day that she did not have to protect me from anything and she could tell me everything. And she has, and it helps her. She can protect her kids and her husband if she doesn't want to upset them, but she knows that she doesn't have to worry about me, I'm a big girl, I can take it.

So - let the patient talk, even if it is upsetting and painful.

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My first piece of advice for the family members of those newly disgnosed is to allow yourself to grieve the loss of normalcy. Life with cancer is different and it is normal and necessary to miss life before cancer. Allowing yourself (and your other loved ones) to go through that process will enable you to learn to live with the "new normal."

My second piece is to make sure you have someone who will listen to you when you need to talk about your fears or vent. Just as it is important for the person with cance to be able to do this, you need to do it as well.

Susan

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1) When it is tough and you need to vent...come here to us :) This way the patient doesn't need to be the ventee.

2) explicitly tell your loved one that you hate that they are going through this, love them so much and will honor their decsions and support them in any way possible.

3) finally when someone offers the "is there anything I can do" have a list of things they can do...whether its rides to treatment, doing shopping for you or your loved one...whatever...because today you may not be tired, but it adds up. So take advantage of all the help you are offfered

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OH AND THE BIGGEST ONE...don't let your loved one go to dr appointments by themselves...especially early on. So much info is given, your head can spin. There should ALWAYS be someone there taking notess so everyone can review the info afterward. I can't tell you how much my mom didn't hear until I recapped it for her.

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I SO agree with cat127 - let them talk. I get so frustrated when my husband doesn't let me talk about "after". There are things I need to know are settled and it is so important for people to listen to me and help me plan.

Second - I often read here people who are doing so much for their loved ones and worrying it isnt enough. It is. Loving them is enough. Talking, hugging, just being in the same room is enough. If you live far away - your loved one doesnt want you to give up your life for them - visit when you can - call when you cant. And TALK.

Understand that your siblings/father/mother might not be able to handle it the same way you do. And that is okay. Don't fight - especially in front of your loved one. After my mother died my siblings and I didn't speak for years - the most important thing to me is that my children are supportive of each other and love each other. They each will handle this in their own way and what they can do is enough.

And TAKE CARE OF YOURSELF - have someone to lean on - a friend, a spouse or a therapist - someone you can go to to vent or cry - give yourself permission to.

Believe me - the last thing we want is for our loved ones to be sad - it is my hardest part of this whole thing - I understand it , but I hate it. So laugh over memories, do fun things together, be glad for the time you have, cherish each new day.

And get your strength from God.

peace

Janet

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I agree with those who emphasize letting the patient talk. Also finding someone YOU can talk to. Even if it's just coming here to vent. I know I wish my husband was computer savy so he could come here, but I do know he has a friend or two he can talk to on the phone.

Nick made an important point--let people help. If I knew a year ago what I know now I would ask for help for my husband. People today just aren't always considerate. Our families are far away and our friends and neighbors here really didn't step up at all. My husband was driving me back and forth to Orlando every three weeks for treatment and trying to do it all when we were home. Many of them are retired and no one even brought over a cassarole or main dish for dinner to help him out. I felt so bad for him especially in the early months when I often felt so bad I could hardly get off the couch. Once in awhile someone would say, if there's anything I can do just let me know. They really couldn't do anything for me but I would have told them what they could do for him.

Judy in Key West

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The one thing I would emphasize (All the advice so far has been spot on. What a great place this is for input.) is that the caregiver can go downhill after a time.

When they "forget" to address their own health issues, especially if age is advancing on both the patient and the primary caregiver, it can be a negative.

It isn't the fault of anyone. It is the natural progression of what occurs when there are so many appointments, scans, in between fatigue times, nutritious concerns, and the like.

One tends to "overlook" things that can creep into the scenario of that new normal.

Talking to those who accept conversations relating to lung cancer is an enormous help for both the patient and the caregiver. Keeping the focus on "the whole picture" is not always easy, but can contribute to better outcomes.

Coming here, if not always to post, but to read, absorb, and learn has helped me keep a certain balance. Without this support, I doubt if I could have made it this far.

So, thank you, one and all.

Love you guys,

Barbara

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  • 2 weeks later...

Keep the waves of communication open with children involved. Be as honest as you can be, or as honest as you feel they are able to handle and seek professional advice, if necessary, to determine what they can handle. Never underestimate a child's ability to sense there is something wrong, and without communication, they are left with only their imagination. Separately, know when/if it is time to level with them and prepare them for the possibility of a great loss.

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  • 2 weeks later...

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