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Questions for caregivers....


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1) What type of support do you have for YOU ?

2) What can your family and friends do for YOU to help you deal with teh cancer dx. of your loved one?

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What support do I have for me? Well...

1. My mom. She takes care of school transportation for our son. I don't have to worry about it. I can agree to any appointment time for Larry because I know this is taken care of. Taking care of Nick when I am not available is her sole job. She is more than willing to sit with Larry so I can do other things, but honestly, I don't feel comfortable leaving them alone together, because Mom is 70 years old and is not physically strong enough to do anything in a crisis, like a fall. But, who better than Grandma to take my place when I cannot be there for our son? This is such a load off my mind.

2. My work. They are simply awesome. No pressure. Come in when you can. No worries. They know they can call me at home if they have a question. Although I feel guilty for not coming in more often, they are content with what I give them. I have offered to quit. I have "joked" about being fired. They just say, "No one wants your job. Do you need anything?"

3. Larry's daughters. The older one has been my main support. Problem is, she has some medical problems of her own. And she enrolled in college for the summer term. So she's not nearly as available as she used to be. I understand and appreciate that, but she didn't communicate her schedule to me. I think we might have resolved that now, but it's been a major stressor. The younger daughter works full time. Has a young son. Is very busy. And has been mostly absent. It not only hurts her dad, but the rest of the family as well. She took FMLA last week. Didn't see her until this week. Very hurtful. But maybe she will start coming regularly. Will have to see.

4. What I would like people to remember:

a) If you tell Larry "I might" see you tomorrow, he hears "I'll see you tomorrow". He will avoid a nap or a meal, because whoever is coming over to do whatever. And I'm not an acceptable substitute. "Honey, I will take you anywhere you want to go." "No, so-and-so should be here any minute." It breaks my heart.

B) It would be very helpful if you took Nick for an outing. And listen if he wants to talk. And let me know if there is something that is really bothering him that I need to bring up in a conversation. I try to answer any questions, but he might not come to me first. I'll be subtle. I promise!

c) Don't try to grill me. If I want/need to open up, I will. Maybe I can't right now. Sometimes the waterworks are so close to the surface, it seems that if I let them go, I will never stop. I have to keep myself together. Please respect that.

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1. I have my family for support, some friends, and everyone here at LCSC. Sometimes I feel like the only ones who understand are people who have gone through it themselves.

2. Friends and family can listen and not be judgmental. I am sooo tired of hearing people say they are "sure" everything will be fine. How are they so sure? And if they can be soooo sure, then I want them to give me the winning lotto tickets!!!! I prefer a simple "thinking of you" rather than being lectured that I worry too much.I hate people who haven't walked in your shoes judging you.

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1. Friends and Family and this forum!

2. What can people do for me... IF YOU ARE TALKING TO ME, ASK ME HOW I AM NOT HOW SOMEONE ELSE IS. (" ohh.... how is your mom holding up?)

offer to take the kids and give me a break so i can have time to "grieve on my own"

shelli[/i]

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This ties into what Shelli said.

IF YOU ARE TALKING TO ME, ASK ME HOW I AM NOT HOW SOMEONE ELSE IS.

I have been having a bad day and I just received an e-mail saying " Hi, How is Tom doing?"

I have always just answered without a second thought how he was. But after the week I have had so far and seeing what Shelli posted it got me thinking.

What about me?

What about how I'm doing?

What about how I'm holding up?

What about how I'm feeling?

What about "Do you need to talk?"

What about "How can I help you get through your day?"

I finally managed to stop the crying for the day about an hour ago and I so want to give a flippant answer. BUT...I will most likely just say that he is fine and treatment is going well and go on with my day.

Is that so wrong?

Denise

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I agree. Caregivers/supporters whatever we want to call them are also going through a heck of a lot. And people need to ask them how they are doing as well.

I have been on the other side of the fence when my husband was very ill for a number of years. I remember when someone finally asked me how I was holding up...it was my husband's grampa poor guy! Well nobody had asked me that to date and I just ended up balling big time to this poor guy on the phone...just sheer relief I think that somebody actually got it that I might be going through a lot as well. And I was. I had only met him once or twice at that point...and even after that, he continued to call back and ask for me. So, it doesn't take much to support the caregivers/supporters, just a bit of common sense and putting yourself in someone else's shoes. That is the trick to empathy I think...being smart enough to think about what it is like to walk in someone else's shoes.

I have personally arranged a weekend away for my husband this weekend. Because he needs it. I have sent he and his best buddy out of town (a very compassionate buddy, I selected carefully)..to have some fun, drink some beer and I know he's about due for letting it all out to someone who cares. While he is gone I think I will phone a few family members and prod them to ask him how he is doing the next time they call!

People aren't ill intended...they just need gentle prods every once in awhile! And some of them have not experienced these kind of traumatic events before and really have trouble knowing what the right thing to say or do is. A proactive suggestion is all it probably takes to get them on the right path.

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