Intro

[lbx]

Hello all

This is my first post here (obviously) but I have been getting great advice and information on the cancergrace board. My 81 year old father was diagnosed with stage IV nsclc on 4/5/10, but it had really been suspected since he was in the hospital with a pleural effusion and suspected pneumonia in 12/09-1/10. It has not spread from the pleural cavity, and is just on the one side. He is going to start a first line treatment with Alimta, and then will go on tarceva (sp?). He also has slight kidney issues, and has A-fib and a very slow heart beat.

As I am sure most of you have too, I have learned more than I ever wanted to know about cancer, so think my questions here might deal more with the ins and outs of managing the fight, and I might feel more free to ramble a little more, which I need to do at times.

Anyway, he just moved down here - literally, we drove 14 hours over the past two days - and is adamant about not moving in with me and my family, although we would love to have him and there is more than enough room. He has already leased an apartment not too far from me, and his furniture should arrive shortly.

I want to be able to respect his independence and autonomy, keep a hopeful and positive outlook, but also be realistic about the challenges we face. S0, my first question, if y'all don't mind, is what you think about living alone during treatment ? I want to respect his independence, and am all for him having his own place, BUT, I want to be able to help him and take care of him, especially when he might be feeling lousy. Plus, I think he really enjoyed staying with us during March and April when he was here to get checked out and the ultimate diagnosis. I believe that he is so strongly against moving in with us because to him, it might be a sign of a rapidly approaching end, and don't want to encourage that view.

My game plan is to help him get his apt set up but make sure the guest room is still "his" and I guess try to have a heart to heart with him and tell him that I respect his independence and realize he is still a fully functioning intelligent adult who can make his own decisions, but that I really enjoy having him stay here, and that - since I work full time and have two young kids - I can be of more help if he stays here when and if he is feeling a little tired and is unable to cook or whatever, and that his presence really enriches the lives of the kids, my husband and me, and, I think, his too.

That being said, my more direct and pragmatic husband would say all that touchy feely stuff is great, but he doesn't think its realistic to think my dad will be able to live on his own in the apartment at all. And, since January of this year, it does seem that he hasn't been able to go longer than maybe 3-4 weeks without having something - most usually fluid on lungs - send him into the hospital for a stay of at least a week.

Do y'all think I am kidding myself that he can still live in his own place, as long as he'll come here when he is not feeling that great, or perhaps on some rotating basis ? Currently, dad feels the best he has in months. He got out of the hospital up north, where he moved from, on Monday night. He is a bit weak and somewhat sore, cause he had a nasty infection in the pleural cavity (epypema ??) and had three incisions and part of a rib removed to clear it all up, but doesn't have nearly the shortness of breath he had been having, and has an appetite again. (but is on 3 more weeks of antibiotics for infection, which is why treatment didn't and hasn't yet started)

Thanks, and after my extremely long winded "introduction" let me just wish everyone here the best. I am so inspired by so many peoples stories and attitudes.

[ts]

Welcome to this site.

I am very interested to see what sort of answers you get, especially from caregivers for older parents and members doing Alimta. If he was only taking Tarceva and had a good response with normal side effects and was other wise in good shape mentally, physically, and emotionally, I would think he could manage for now on his own. But I know I rely heavily for emotional support from my partner a lot of the time and physically when I don't feel well. I'm much younger than your Dad and have had quite a series of urgent care and doctor office visits since I started this journey. It has been a blessing to have him around.

My Dad lives in an adult family home - I think since he was 86 (he's 91 now!) He doesn't have cancer, well, actually he does, skin cancer that he has decided not to treat - the operations are lengthy and pretty dangerous for him as he has a few other chronic conditions. Arranging for his medical care and taking him to appointments, and doing the middle of night ER trips have been a shared "hobby" for my brother and myself. We really waited a little too long in not forcing the issue (from apartment to a care home) and there were a few incidents that compromised his health.

You sound like a wonderful daughter with a great family - it sounds like they support your desire to help care for your Dad, including inviting him into your home to live! You do know that it fairly remarkable? I wish I had that opportunity, but I couldn't have managed it before and now, it isn't possible.

I'm really torn about your question about whether he can (or should) live on his own, especially until you see how he is doing on treatment. I understand he may want his independence, he may also feel overwhelmed living in an active household? You have a family to care for and can't always drop everything to attend to his needs, but if he was in your house I guess it would be more part of the routine. You'd sure bypass the nasty surprise of finding he hasn't eaten in days or had fallen and not got up for a day.

I think you are thinking very clearly about your situation and your Dad's and talking openly with him is an appropriate thing to do. And then go from there. Hopefully, the answer will be more obvious.

Great topic - I can't recall much discussion on this since I joined.

[jaminkw]

Welcome aboard. I'm a survivor, not a caregiver but will offer what I can from my perspective. They made my dx from cytology slides on the fluids in my pleural effusion when I had pneumonia in Sep 09. I was one of the lucky ones who didn't have fluid return for a long time. I do know they have procedures to deal with recurring fluids and am assuming your Dad's had them or they've been considered?

I was on heavy duty carboplatin/avastin/tarceva infusions for six rounds every three weeks. That and avastin maintenance put me into remission for six months. I went off avastin and got another six mos in remission. Like your Dad, I only had cancer in the pleural cavity and when it came back it was in the same place. Long story short, I went on Alimta in May 09 and aside from some pretty horrendous experiences due to constipation. I didn't respect how bad the could be if you didn't take significant measures to deal with it. Once I got the knack of that, it the easiest chemo I've done. I'm 66 and it took awhile before I was comfortable with my husband traveling for work. But I am now and do fine alone. Probably the most important thing is that he continue to eat and not lose weight. Sometimes it's hard to provide proper nourishment for yourself when you are alone. Perhaps you have a meals or wheels or something similar where you live that could come and make sure he has one nutricious meal a day.

Although your family is very generous in wanting Dad with you, you mention young children. I have grandchildren I love dearly but can remember times they could be exhausting as well as exhilerating. Also, independence is important as we age. See what happens but make sure he eats and has a comfortable place to sit in his new apartment--with the TV and/or whatever else he might need close at hand.

Please keep us posted.

Judy in KW

[recce101]

Hi, lbx, it's good to see you here at LCSC. This forum and the excellent medical info at GRACE pretty much cover all of our support needs.

Your situation sounds something like what we went through with my dad back in the mid-90s. He and my mom were living in Texas, she passed away in 1995, and we convinced him to move to Hawaii to live near us. We leased him an apartment in a senior complex at couple of miles from our place. He was 84 at the time, and in good health except for early prostate cancer which was being handled in a "watch and wait" manner. He had some wonderful neighbors at the senior complex, went golfing a couple times a week, could still drive, etc. It was terrific to see him out and about and having fun after taking care of my mom for so long.

He had two great years, then the prostate cancer started to progress, and in spite of treatment he went downhill rather fast. There was a period of a few weeks between the time he was still able to function independently and the time he was hospitalized when I found it necessary to spend nights at the apartment with him (our spare bedroom was occupied by my wife's mother). It was sad to see him steadily losing the independence he had treasured, though I'm sure deep down he realized it was necessary.

If your dad responds well to treatment and doesn't have frequent complications arise, he can probably continue to live by himself for some time. I found Alimta to be quite tolerable after I got the constipation under control (daily use of stool softener and senna tablets). There was some fatigue for a few days after each treatment, but thankfully no nausea or adverse effects on taste or appetite. You would need to check on him daily, and it would be good if you could set up a routine where he stays at your place at times and, if space permits at his apartment, someone "camps out" there on occasion. Then when the time comes that he needs more help, staying at your place more often or even continuously won't seem to him like quite so big a step.

I'm not saying it's going to be easy, and I think sooner or later your husband's view will be one that you share as well. Stay alert and don't depend on your dad to tell you when the time for more help has arrived. Most people find it difficult to make that determination for themselves. Blessings and Aloha,

Ned

[Joppette]

Hello,

Being sensitive to his need for independence is important, but considering his age, mental sharpness, physical dexterity, are important. You would definitely have to make it part of a daily routine for someone to stop by and check on him. My Mom was dx in stage IV, and if not for my step-Dad, I'm afraid I would have had to move in there with her. She would never have moved in with me, even though I don't have children at home.

Her independence was fiercely important to her. And I couldn't blame her. I think you pegged it right when you said he is not ready to feel like it's time for the end. When Mom was first diagnosed, I mother-henned her and she hated me hovering over her, making sure she took her meds, etc. And I felt so helpless that I over mother-henned her to the point where one day she kicked me out of her home!!!! My step-Dad was elderly and couldn't keep up with her medical stuff, so it became my job to take them to doctor's appointments, treatments, etc. It was exhausting, but I wouldn't change a thing because when she died, she left with her dignity and self-respect in tact.

But it was difficult, to put it extremely lightly. My husband was a very understanding man, thank God. It was about a year, where I was not at my own home much. But she did have my step-Dad there, and I knew he would call me when things got bad.

It's a tough decision. I can tell from your post, that whatever you do, will be done out of love. And that is the best we can do.

Judy in MI

[lbx]

Thanks everyone. Your insights, advice, and opinions are very helpful !

We had a good weekend together, and the kids probably drove me crazier than him ! We grilled some steaks, and then the three of them played spiderman UNO and blackjack and ate ice cream cones (my boys are 6 and 8, so they aren't that young...) It was really nice, and I think we are getting back into the routine that we fell into before he left a few weeks ago to pack up his old apt up north. Maybe he'll consider staying here during the weekdays, when the kids are at camp during the days, and will go to his apt for a respite during the weekends...

I am sure I'll be back with more questions, and probably to share updates, but I tend to obsess at times, and need to be careful not to get too consumed by this, so I am going to try not to read and post too much. Which sounds harsh looking back at the words, but I guess I mean I don't want to stay on the internet late everynight (like tonight and last night) researching, reading, and posting, when I am exhausted and my body is telling me in various wasy that it does not appreciate the lack of sleep on top of all of the stress. I'd rather try to focus on taking care of myself and my family - kids, husband, dad - so that I can enjoy the time we are having together. So, if I start posting alot, or you see that it is late, please kick me off and tell me to go to bed !!!

Sending everyone strong fighting vibes, and wishes for a good night and tomorrow.

(darn, thought of another question, but I need to get to sleep, since I really am starting to fall apart physically, and probably emotionally too. and have to get up for work tomorrow morning. figures. and that wasn't even my question, but I am sure it will be at some point, in the "how does a caregiver hold it together" forum. but I digress so better sign off. a good 20 minutes later than I should have.)

[jaminkw]

Sounds like a lovely weekend and that things are looking more positive from the caretaking view. We all know what you mean about finding a balance in your life so you don't stop living. I have been a recovering control freak for many years and my cancer dx kicked me up a few notches. You do learn you can't control it all. I did my first cancer google search recently when I hit a bump in the road. Did me no good, lots of harm. Just come here or cancergrace when the need arises. Trust me, you will learn all you need to learn to help your Dad over time and in language that doesn't freak you out.

Good luck.

Judy in KW

[Joppette]

Hope you slept well last night. I agree with KW Judy. Searching for answers on the internet can lead to very frightening, often miss-leading information. Cancer grace, and us are your best resources. We've got experience as caregivers here, and as people that had the disease. Can't get much better than that.

Hang in there. Things will work out as they are supposed to.

Have a great day.

Judy in MI

[fillise]

Hi!

It sounds like you have handled the situation with your dad very well. You might suggest that he stay over a few days after his treatments and then he can return home when he feels bettwe. When mom got her chemo she would feel good the first and secod day and then crash on days 3-5. After that she would bounce back pretty quickly. You can work it out as you go along.

Oh--and on that caregiver question. When mom was first diagnosed I would have to walk outside sometimes and have a cry and then come back in and talk to her. I tried to educate myself as much as possible to help her understand her treatments and side effects. Finding this board made it much easier to deal with the issues related to her illness without falling apart. After I read the stories of all the survivors here it was much easier. I'll tell you one other small but significat change in my thinking. It is very common to begin mourning for your loved one as soon as you find out he/she has lung cancer. I was doing that. Then it dawned on me that instead of being sad, I should be grateful for every day I had with my mom. I can't tell you what a difference that made. Every day is a celebration--a reason to smile. I've had a lot less "falling apart" spells since then.

Susan