Different Planet

[mjb]

Does anyone else here ever feel like they are living on a different planet from the rest of the world? At this point I have virtually no social activities. I am grateful for every day I have and I want to spend every minute I can with my husband but there are times when I feel very removed from the rest of the world. How do you make small talk when the only thing you can think of is your loved one may be gone soon. How do you prepare? There are tons of support groups for people with prostate, pancreatic or breast cancer, but very little for those with lung cancer and even fewer, apparently, for those who are taking care of someone with lung cancer. If I do go off by myself for awhile, I find myself crying - can't do that at home because he would worry about me. I know I need an attitude adjustment but there is so much I need to do. Earn a living (from home), take care of paperwork, fix meals, take him places, clean house. My yard is a mess, repairs to the house have to be put off, finances are tight, my hair won't even behave! How does everyone cope?

[Jyoung20]

I can only imagine how overwhelmed you must feel. Keep strong and maybe try to find an outlet that you are really interested in. Try doing that one night a week or so.(Bowling, Working out, Church actvities). Everyone needs to have some down time. Especially caregivers!!! My husband works on cars on the side (for fun- he's restoring a '76 corvette stingray). It gets to be a little costly but he loves it and gets much gratification from it. I think it is wonderful that he can do that. Find something that you love or can learn to love and go for it.

Hope this helps!

GOD BLESS!!

Jamie

[Connie B]

The answer to most of your questions are, ASK FOR HELP, ASK FOR HELP, and ASK FOR MORE HELP! This is TOO MUCH for ONE person to do ALONE!

In regards to your question "How do you prepare" If your talking about death, then there is NO SUCH THING as BEING PREPARED! Nope, Nope and Nope! If and when it happens, your NOT READY! Not now or later. Push that right out of your mind, because there is no answer for that.

Your doing all the things we have all done at one time or another while taking care of your loved one.

As for small talk. You know what? You talk about anything you want when where and how and with whom. Your TRUE friends will understand. IF you don't want to have small talk, then don't!

There really aren't many CAREGIVERS SUPPORT GROUPS! There SHOULD BE! But, there's not!

IF you belong to a church, then ask them for help, be it yard work, cooking a meal twice a week, cleaning your toilets, what ever. You really need to ask for help. It's healthy for you to do that, and good to get the help. If people want to do small talk then ask them if they would like to do you a small favor and lend a helping hand!

Take at least 8 hours a week just for YOURSELF! Be it a bath, shower, sitting and reading a book in the garage, or park, get your hair fixed, go shopping, etc.. Even if it's an hour here or an hour there. IF you cry that hour, then so be it, if you sleep that hour then so be it. DON'T put all these expectations on yourself. BABY STEPS! Take ONE issue at a time and do something about that issue, then move on to issue two. If you get them all taken care of then GOOD FOR YOU, if not, then GOOD FOR YOU! Your only ONE PERSON!

I've been in your shoes more the once and more then twice, and I know how hard it is to be YOU! BUT PLEASE ASK people for HELP! You won't be sorry!

God Bless and Take it easy.

Hugs,

Connie

[kamataca]

Always remember that even though many of us are positive on the boards, we have our own breakdowns sometimes. At times, I've had one on the board, and other times just in my room.

I finally realized, early on, that I wasn't helping ANYONE by overwhelming myself. For awhile there I was a lousy mom, wife, teacher, friend, etc., because I couldn't climb out of my funk. I had to let go of something. I had to realize that I couldn't control any of this, and that I wasn't helping my Mom by running everything else in the ground.

I hope you are able to find some peace soon. I really feel for you.

Kelly

[ginnyde]

When Earl was first diagnosed I put all the 'other than Earl' things in my life on hold. I did this for about 6 months. Then I woke up - this was not the way that we (Earl and me) could live our lives.

You MUST have some you time. You will come back to the caregiver you with some of the weight off your shoulders. Do not refuse any offer of help. Those that offer truly want to help. If they say what can I do, give them something specific, like can you go to the store for me, can your son mow our lawn, whatever needs to be done to make your life easier.

Force yourself to have some 'idle chit chat' with friends. Talk about Desperate Housewives or the latest celebrity scandal. You should not be thinking about your husband being gone soon all the time, your emotions need a break too and you don't want your sweetheart to have any idea that is what you are thinking.

I guess what I am saying is be kind to yourself, you know that is what your husband wants.

[Don Wood]

Hi! I feel your frustration because I've been there, and continue to be there. A caregiver is in a three-ring circus: (1) being a caregiver for the LC patient; (2) doing all the things you normally would do (life goes on); and (3) doing the things your spouse would normally do, but can't now. You have to prioritize and do those things that need to be done right now. And, as Connie said, GET HELP! Ask your family and friends to help you out.

Probably the most important things to keep you going is: TAKE CARE OF YOURSELF! If you don't take care of yourself, you won't be able to do the best by your spouse. You need to take breaks, do some fun things for yourself now and then, do little things that make you feel for the moment that you have some control back (it's an illusion, but it helps). Hang in there! There are plenty of us on this board that you can talk with. Blessings. Don

[Treebywater]

It took me a long time to 'get this' enough to do something about it, but I finally came to a place where I HAD to ask for help. I'm not in a place where I feel like I have a whole lot of support, but I knew one or two people that would help. So... I called my best friend here and said--I need dinner's made... could you see if there are people who might bring us some? And then I called our next door neighbor and said--I can't get the house clean enough with all that's going on. Can you help?

I started doing this at a time when I really NEEDED to be with Mom, and I'm so glad. Think of those one or two people that you know you can count on and say--HELP!

I know how difficult it is to juggle everything. Your husband is so blessed to have you care for him as much as you do. But be gentle with YOURSELF too. For your sake and for his, you need to take care of you.

You can do this. We're here for you.

[Ry]

How is your husband feeling? From reading your profile it looks like he is doing well with the cancer. I know when John was ill from chemo it was extremely stressful to have to pick up all the things he did when healthy. If people offer to help--take it. If the yard is a mess-- leave it. You are only one person and you have to prioritize.

What helped me during that time (believe it or not) was walking. Just getting out and working off the tension helped tremendously. My friends were good listeners and that helped a lot.

It will get better.

[mjb]

Thank you all. Believe it or not, just having people reply made me feel better. In the past 5-6 weeks he has gotten weaker and suffered from dizzy spells, so I don't like to leave him alone for long.

Between worrying about him and worrying about money, I just seemed to slip into a bout of depression. We have no family nearby and one or two people I thought I could count on are not the friends I thought they were. (And yes, I actually did ask them for specific help.) However, after reading the messages I have taken some small steps and am meeting an acquaintance who has been through something similar for a drink. And my former boss for lunch. Need to look at this as an opportunity to make some new friends and not spend time thinking about the others.

Now, if I can just get focused enough to concentrate on working from home, that will take care of the money problem.

Thanks again - my mood is somewhat lighter today.

Love to all.

[Jyoung20]

Hey MJB,

Have you checked on SS disability. I truly hate to see anyone suffering with finances when you have so much other stuff to worry about. Also, check with a nearby church about providing supportive services (food, transportation, support). Even if you don't attend, I know there will be people there that will jump at the chance to help.

GOD BLESS YOU!!!!

Jamie

[Snowflake]

M~

As for the crying, it ain't called a "water closet" for nothin'. Cry in the shower, cry in the tub - take time to relax and breathe deeply and let it out.

Take some time for yourself - like maybe a cut and style? Maybe you've just let yourself get too far between trims?

Try for a new perspective. At ANY time in your life, your loved one could be taken from you - there are beer trucks on the road every day, ya know. You still don't know anything more on the day written as "The End" in your loved one's Book of Life. Stop trying to peek at the last page and work on filling EVERY chapter with everything you can. Live as if your loved one will die tomorrow, plan as if you'll both live forever. Make sure you'll have enough money for the basics: food, shelter, heat. Don't plan to die, plan to live.

Every day YOU are on the top side of the daisies is a day to celebrate. Try to keep your nose away from the fertilizer and dance.

[bunny]

I felt exactly that way all summer. I felt like I was in the monkey house at the Bronx Zoo - people could see me in there, being very active and busy but they weren't quite sure what I was up to. I called it "cancer land".

I stopped doing yoga, stopped seeing friends, spent all of my free time here, or on WebMD or other related websites, or, of course, with my mom. I was OBSESSED. the truth is, some good came out of it - I am really informed now about LC and have found many ways to help my mother I just wouldn't have known otherwise. BUT, I paid a huge price. I am only now digging out of the hole at work, and starting to lose the 10-15 lbs. I gained. my BF is incredibly supportive, but it definately strained the relationship, too. it all grew out of love and fear, but it wasn't the right way to go about it.

so the moral of the story is - balance. IF my mother ever goes into some kind of crisis mode again with her LC, I pray to have more balance where I can show up for her and maintain my sanity a little better too. and Becky is right, release is important. for me, it was usually a good cry and a bag of cheese doodles.

I would have gone completely around the bend without this place, THIS is my caregivers' support group. so let us help, in whatever ways we can.

xoxo

amie

[mjb]

Back again. And thanks again. I'm better now - just had a few bad days. Had to laugh about the 'get a cut and style.' Earlier this year I decided I could no longer deal with long, all one length, hair so I went and got it cut off. Since then, I've been back twice trying to get something I can style - it's terrible!

And I hate to complain about it because he's been through chemo, radiation, WBR, stereotactic surgery & brain surgery. What's a bad hairdo compared to that.

Per the suggestions, yes we have gotten ss disability. With a 10K deductible, it covers that and not too much more. I will survive - God hasn't let me starve yet. Just worry about all the money going out and not much coming in.

I have hated to call my church for help because I haven't been there much since he was diagnosed. It's my church, not his, and I prefer to send Sunday mornings with him. But I'll talk to them.

This last two years has taught me to appreciate every single day - even the bad ones. We love deeper, we appreciate each other more and the trivial things really are trivial (except for the haircut thing). If anyone had told me 2 years ago that I could crack jokes about a brain tumor, I would have thought they were crazy.

The planning I do have trouble with. I have always planned my work and done yearly plans on a personal level. Now my days are dictated by all the things that have to be done, which includes running anywhere he needs or wants to go. Trying to do a business plan seems pointless - I can't see far enough ahead to know if I'll even be able to get on the phone on a given day. And my business requires that I be mentally tough and take a lot of rejection. Right now, some days I can and some days I can't. But it's okay - I will get some things going and we'll get by.

Sorry, I've rambled on. I just lost it for a few days and needed to know there were other people who had a clue what this like. I get tired of being told how strong I am. Anybody else been there?

Thanks for the support.

[Maryanne]

Thats what we are here for, to let you vent. Its okay. We all go through that. I am just glad you are feeling better.

If you can pin you hair back, you can get one of the clip pony tails (thats what I call them) they come curly of straight. You just clip it on an wella it looks great. Just a suggestion for a real bad hair day. You can buy it at a beauty supply place. If you have a Sally's they have all kinds and lengths there. Plus the clip adheres to your hair real tight.

Anyway, I am glad you posted that you are feeling better. You are doing great, hang in there.

Maryanne

[hollyanne]

Hi -

I am so glad you are doing better. Sometimes, I just have to let myself have a fearful and bad day...knowing that they can't all be like that. Just getting out of the house and singing in the car helps me -- in addition to a good, very hard cry.

Hang in there.

Love,

Holly