stressed

[hinj]

father has tolerated radiation well and has been eating very well. he has gained 10 lbs (although mostly all in belly and he is on steroids). he has not really gained any muscle tone back though. i worry since weight loss is a poor prognostic indicator. his performance status is good. just a little bit slower then he used to be.

i worry given the nature of the disease and his extensive tumor that he is going to suddenly spiral down rapidly. i am finding it hard to live each day instead of thinking about the inevitable and when it might occur. I worry because i am able to be off for work for now and stay with him, but i won't be able to later on. I don't live near by. he lives alone since my mother died a year ago. it is all very stressful. there are other family members nearby that can help occasionally, but he is a private person who doesn't really like other people to help him. i am in the medical field and this makes him feel more comfortable that i am around. i just wish that my other family members would actually take the time to do some kind of research on the disease and actually learn about the meds, treatments, and side-effects so they can know what it going on. it would be a great sense of relief to me when i have to leave if they knew more about the disease and what to expect. ihave tried to tell them and they say yeah, but never do it.

[deb10653]

I am so sorry that you are having to deal with this all alone, I know it is tough since I also am dealing with this as the only caregiver. Just try to do the best you can and try to find some little pieces of time for yourself also, worrying about the "what ifs" is natural I think and I try to push them aside but they are there. Keep trying to get some other family members to learn about what is happening and to understand that you can not always be there, I pray one of them will understand and join you in your caregiving. Please keep us informed on how you are doing... this is a great place to share your feelings and situation, I am rather new but from what I can see nothing is really "new" to the great people here and their support is invaluable!

Deb

[hinj]

thank you for your support. i'm sorry that you are going through your situation as well. it is all very difficult, but you are right, i think this site is helpful.

[CaroleHammett]

Hinj.

I know that telling you not to worry won't help, but I can tell you this: As a cancer patient myself, I want my family with me now while I'm still feeling well enough to enjoy and appreciate their presence.

Once the downhill spiral begins, I suspect I'll be more interested in curling up into a tight little ball covered with fentanyl patches and drinking roxonol from the bottle with a straw.

So give him what you can now (your presence, your caring, your love) and know that these will always mean more to him than the physical act of caregiving (even if it's the latter that wears you out).

Carole

[SandraL]

Hinj. My thoughts are with you and I am sorry that you are carrying this on your shoulders. It is not easy for anyone but it sounds like you are doing all that you can do. I hope you can get other family members more involved. Take care

Sandra

[hinj]

i just wanted to thank everyone again. your comments are all very helpful. I do hope that my other family members understand more. i also hope that my father actually lets them help out more. right now he keeps saying that he doesn't need anyone else because he has his own personal doctor. i think that is part of the problem with my other family members too because they just think that if anything goes wrong, i can just fix it. unfortuantely, there is nothing that i can do that any other educated caregiver could do. I'm not an oncologist and so I have to look up and research stuff about lung cancer too. i have to ask dr. west questions as well. being a doctor may make it easier to know what the oncologists are talking about in terms of anatomy and meds and stuff but it doesn't mean that they can't learn the meds he is on too. it just puts a lot of pressure on me to fix something that can't be fixed. i'm sorry for rattling on.

you are all right in that I know I should not worry about the what ifs. I'm trying to feel a little better especially since he is feeling better. i just worry about the start of chemo and the possible side-effects. thank you again.

[Larry's Wife]

I would imagine it is pretty common for some family members not to step up. Let me tell tell you a long, drawn-out story:

Everybody was there when Larry was transported by ambulance to the hospital with seizures back in January. Everybody was there when we brought him home from the hospital so he could die with dignity.

We were running two 24-hour shifts of two people. I was teamed up with Larry's oldest daughter (S). Larry's youngest daughter (J) was teamed up with Larry's sister (D), a retired hospice nurse. I thought we were doing fine, but then D got the out of town family in an uproar that S was overmedicating him. Mind you, he was having hallucinations and we were giving him less than the minimum dose of Ativan and Haldol. We only gave him medication if he was symptomatic (as were D & J). So, I had to call the out of towners. I explained the treatment plan and our dosing schedule. They all agreed that we were doing the right thing for Larry.

We write everything down. No doses of any medication are given without writing them down, courtesy of D, our retired hospice nurse. She set up all of the charting that we do. And it is a good system. It has really worked for us.

But honestly, I didn't understand why D would want everyone to be in an uproar. She had been so helpful, but then she just got vicious. I didn't understand her motivation.

So anyway, a couple of days later, Larry was feeling much better. S and I were just coming off our shift. As we were waiting for D and J to relieve us, we started talking about how Larry was doing so much better. We brought this man home to die, but he is improving by leaps and bounds. We didn't understand. Maybe we should get a second opinion. So I called Larry's primary doctor to see if we could get an appointment. Yes, you can get an appointment. Be here in 30 minutes. Well, we live 45 minutes away, so we packed Larry up in the car and I drove like a maniac to get there. On the way, we left messages for D and J to call us. So, we get to the doctor. He confirms that Larry has the right diagnosis. We come home. D and J are waiting for us. Mad as two wet hens. Why didn't you call us? We did. Why didn't you wait for us? You were already late, we didn't have time.

So, then the fatal words from D, the retired hospice nurse: Well, you don't need us anymore. We're going home. So D and J left. S and I looked at each other. S said, "I need to leave, too. I need some sleep." So she left. And Larry and I were left alone.

Well, S came back the next day and we started our routine. She and I take care of Larry. We have done this since early February. But S has medical problems of her own. I can't always depend on her to come so I can go to work for a couple of hours. J comes (rarely) in the evenings, for a "party". She says that she has already settled everything with her dad, so she doesn't feel the need to come and "hang out". D, a snowbird, has moved back up north. To my chagrine, I don't miss her. She came occasionally to relieve me before she left, but she talked Larry's ear off while she was here. She never gave him a moment's rest, which she fully admitted. "Well, Larry was tired today, but he didn't get a nap because I just had so much to say to him. You know how I am!"

So, S and I have been sole caretakers. But, because of S's medical problems, I can't depend on her to be here when I absolutely have to leave him. So, sometimes I leave him alone. It scares me to death!

Well, on Memorial Day, we had a cookout. Both S and J said that they would start coming again regularly. OK, great. Today comes. S rolls in at about 2:30. My work gets out at 3:30, so no sense going there. No sign of J.

Sigh.

[hinj]

i am so sorry that you are dealing with al of that. i can not understand why anyone in this type of situation would want to create more problems by trying to stir up controversy as D has done. i also can't understand how J can feel like she has already settled everything with her father an doesn't need to come by often.

it's also hard when people make a commitment to be there and then you cant count on them. again, i'm sorry that you are dealing with all of this.

[Larry's Wife]

Thanks, hinj! It felt good to get that off my chest.