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Need encouragement...don't know what to do anymore


Tim'sKathy

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I was supposed to go up to the nursing home to see my mom from work tonight ( It is about an hour away). I have not gotten to see her enough lately because I feel I belong with Tim, so my aunt (her sister) has been going 3 times a week (my mom knows what is happening with Tim) in my place. I called home this afternoon and I could hear something in Tim's voice and I said, you know, I can come home instead. At first he said no, you had this planned, but then he admitted how bored and lonely he is ...he sits here all day with not much to do...he tries to do "busy" stuff in the morning, but he said by 1 or 2 he is tired. We thought that he would be feeling a little better by now as he has been off the chemo (last treatment 5/27) and thought he would have some of his energy back. Some of you here have told me it took months for that to happen...and I understand it...but he is getting so discouraged.

Needless to say, I ended up coming home and when I got home, he told me how he waits for me to come home and is so glad for nights and weekends with me. He started crying ...and this is a man who I have only seen cry twice before..once when My dad passed away and the night they told him he had cancer. He said that he is so glad to have me and that he feels so worthless. Well, it killed me to hear him say that.

He started Iressa 6 days ago...and I am praying that it works...but I am just so damn scared of losing him....I know he is depressed because his sons never visit...it's been a month since we have even heard from them. I don't understand it...their father was so good to them growing up...supported them and was ALWAYS there for them...neither one of them are working, so it's not like they don't have time. If they would just come over with the kids, it would be something for Tim to do...he loves his grandkids...

Sorry this is so long, and I am whining...but this is just one of those days I don't want to be a grown up anymore....

Thanks you guys for listening....sorry... :cry:

Kathy

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It's a tough disease to deal with especially if there a few who are offering support. I would try to encourage anybody to go and visit and keep company. Try to ask importnat questions and have a meaninful conversation. There may come a time when the lung cancer survivor has nothing to look foward to and has loss the will to live. Luckily your loved one still has live left so cherish that part. good luck

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Hi Kathy,

That is a tough situation. In our case Hugh has always been a very busy person. Unlike me he never liked to sit around and was always puttering. Its so hard to go to work and leave them home. We have been very lucky in that Hugh bounced back from chemo quickly and has been able to get back to doing things. When he couldn't he was also depressed and he still has days that he has no energy. I don't think I have any great advice but one of the things I did was to always ask Hugh if he wanted to come along. Even on the days when he was feeling lousy he would usually jump at the chance to do stuff after work. Even stuff he had previously disliked doing (like grocery shopping). Instead of going grocery shopping after work I would go home and we would go together. Sometimes he was really tired but getting out would usually make him feel better. I changed my usual habit of grocery shopping once a week or once every other week to running to the store several time each week so we weren't in the store as long and we got out more often. Maybe Tim would ride with you to visit your Mom? I also keep my weekends just for Hugh to do the stuff he wants to do or feels up to doing. I used to call him during my lunch time and chat with him. There were a few neighbors that offered to visit him but Hugh has never been one to sit and "visit".

As for the kids not visiting. I know that hurts and really its out of your control. I get angry at our kids, too. I have been trying to look at the situation when I find myself getting mad at them and asking myself what I can do to help it. I found myself getting really irritated on Hugh's doctor appointment/test days if the kids "didn't care enough" to call to find out the results. Then I decided that I would just come home and immediately call them. I usually say something like: "I know you must be worried sick about your father's test results so I wanted to call you right away". I just feel like for those things that I can take the initiative to make better why not do it? My choices are to sit home and stew about their "not caring" or to not let it be an issue and to call them before I even know whether or not they will call. I sometimes will call them and invite them over for dinner instead of waiting for them to drop in. They most often will come over if I invite them for dinner or even ask them to drop in on their father during the day if they aren't working. I often feel that I shouldn't have to ask them, but given the choices I would rather ask them than waste time being mad at them.

I think being depressed is part of this whole darn crummy disease. It SUCKS. How can they not be depressed? I hope Tim feels better soon!

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Kathy, Tim needs a focus, a hobby -- is there anything he could be excited about doing, even on a limited basis? Lucie's last chemo was about the same time as Tim's and she is still sleeping a lot and tired. But her focus is sewing and she has begun to do that. It has really helped her spirits. Do you have friends that would come by routinely to visit him, maybe even take him outside? As caregiver, you need to do other things too to keep your sanity and health. I think you should go see your mother and not keep putting it off. I think there will always be something, and you just have to plan it and do it. We have found that we have to make a list of the "routine" things that need doing or we want to do, and just schedule them in and go with it. Hope things get better for you two. Don

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Don's suggestion about a hobby is a good one.

Also, if you can get Tim to get on the computer put him in touch with ALCASE, or have him come here. You know, one of the best ways to feel useful is to BE useful. Tim has a wealth of personal experience dealing with Lung Cancer now. He could help others who are just starting out on this journey by sharing what he has learned. We all remember what it was like in the first days and weeks. He has a lot to offer.

As far as the family goes. Get on the phone and tell the sons the latest news. Then point blank, say something along the lines of "And what day this week can I tell your Father you'll be by to visit him?". If that's too subtle just say "You need to come to the house and spend time with your Dad, because he deserves to be well treated by you." Hey, my Mom used guilt as a "parenting tool". It's pretty effective. :)

Hope things improve soon.

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Kathy,

Not only for Tim's sake but for yours too, Tim needs some diversion so that he doesn't spend all of his time waiting for you to come home. Are there friends who could drop by weekly? Bill has one friend stop by every week if only for an hour just to visit and he really looks forward to it. I also suggest that he go with our daughter out to lunch each week - just the two of them. Right now she just got her driving permit (15) and he is taking her out when he is able to practice driving. It gives him some purpose.

You must take care of yourself too, dear. Are you doing anything just for yourself?

Praying for you both,

Peg

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Thanks for all your suggestions...Don, I have decided that it would be better to visit mom on a Saturday or Sunday..that way I am only away from the house for 3 or 4 hours...when I go from work, well, it's 13 or 14 hours that I have been away from home. So I think that will work well and Tim agrees. He has always wanted to build a model RR...so this weekend I am going to surprise him and go get the basic stuff for him to start on it.

Fay...I love your suggestion about the kids...don't give them an option other than what day.

I did call his sister this morning and she is going to talk to the rest of the family and some of the people he used to work with at the hotel...

On a bright note...He went up the hotel to visit today and he ran into a man he knew from the Rotary Club (they have their meetings at the Hotel)..Well he asked Tim where he had been, and when Tim told him , he said...I had lung cancer too...went through all the treatments, and was told I had 6 months to live...and that was 10 years ago). Perfect timing because this is just what Tim needed to hear !!! See, only God knows !

Thanks for being here for me !

Kathy

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Peg...

Thanks for asking about me too ...I had gone to Nashville to visit friends for 4 days back in June and it was a great break to me. I try to get out with my friend Rebecca once a month for Dinner, but she was on vacation, so hopefully we will do that next week.

It's funny how much I appreciate someone asking how I am...I am not being selfish...but it is just nice to know that someone realizes what I must be going through.

Thanks for all your suggestions !

Kathy

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Hi Kathy,

Gosh. What a dilemma. Unfortunately, I know exactly what you are going through. This sounds so similar to what my husband Richard said and expressed. He was 56 when he passed from lung cancer and only 6 weeks before had been diagnosed. I must say that I think that the drugs have a lot to do with the emotions. Is he taking any kind of steroidal medication? That can be quite a mood unstablizer. I also remember calling Richards siblings (they had not spoken in 6 years) and explained how serious this was. Within 2 weeks, they all flew in to see him and it was wonderful closure for him and probably them too.

Perhaps some good music (Streistand, Charlotte Church) over a pair of headsets would be relaxing for Tim.

Anyway, you both always have lots of support from this group. We love you both and are praying for you!!!

CathyR :)

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Kathy

I think its time to take off the gloves and get to the point with your stepsons. How much more serious can it get than now? I would simply call each one of them up on the phone and tell them to get over and visit their dad NOW! I'm sorry but I don't pull punches, the man is ill and needs to see his children. Who cares if their feelings are hurt? I wouldn't. If they don't like it that's too bad, you can't force them but you can sure let them know how he is feeling. They have an obligation and responsibility to their father and they are adults and should be forced to face the music. I would not wait another minute, I would call them today and tell them EXACTLY what is going on. Even if it doesn't do any good it sure will make you feel better. If it alienates them towards you well so be it, it doesn't sound like they are that close to you anyway. Tim is the patient and he is the one that is important now, he is the one with the disease and should come before anyone. It sounds like you are going to have to be his advocate for quite a while but thats part of the deal, I know exactly how you feel, I am the one with the disease now but my husband has had very serious illnesses throughout our marriage, 2 open heart surgeries, lived on an artificial heart at one time, and on and on, during those times I never thought of myself, he came first, I was healthy and was grateful for that, now unfortunately it is his turn to be the caregiver. What goes around DOES come around.

Bess B

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