What do I do?

sassy1

My husband was diagnosed with Stage III NSC lung cancer seven years ago. In May he became seriously ill and was in the hospital for several weeks. While in the hospital, he was rediagnosed with State IV lung cancer. He was in and out of the hospital for two months before he could start the chemo. He did two weeks of chemo and ended up back in the hospital and then in a subacute rehab for a month. During his stay in the hospital, the oncologist advised me that he was no longer going to be able to do the chemo and that when my husband was out of rehab to contact him and he would discuss it with us. The middle of September, we saw the doctor and he advised us that my husband was too weak and ill to handle the chemo and therefore, would not be able to respond to the treatments because he could not continue it without illness occurring. He then broke the news that my husband only has months to live. My husband is now on hospice care and I am having a hard time dealing with the situation. His family does not come around because I think they are unable to accept the fact that my husband did not want to continue the chemo and that he wanted to go for quality instead of quantity of life. I come from a large family and I only hear from a couple of them. My husband Glenn has started to experience a lot of pain and they put him on morphine. As a result, he is totally different person. Yesterday he could carry on a conversation with me and last night and today I'm lucky if he knows who I am. At one point he was very combative with me. I called the hospice care this morning and they just advised not to give him the morphine. However, it is a 12 hour timed release and I don't know how long it takes to get out of his system. I just don't like the fact that he doesn't know who I am and can barely do anything now. I have tried to talk to family but I don't think they really understand what I am going through. I know it is extremly hard on my husband because he was always such a strong and loving person and now he is no longer there. I don't know what to do because I just can't seem to get someone to actually sit down and talk to me about the situation without changing the subject. I guess that as the saying goes, unless you walk a day in my shoes you won't understand what I'm going through. I had to take leave from my job when my husband first became ill so we have lived on limited income since that time. I'm just afraid that I am going to lose my sanity and I don't know what to do!

MichelleP

Sassy
I know exactly how you're feeling. My husband was diagnosed with stage IIIB in March 2009 and passed away Oct 13, 2009. He too was on hospice for the last two weeks. I can tell you that looking on it now I wished I had not allowed so much medication. I know he was agitated, but I've since learned it was the "morphine" that caused it to happen.

My heart goes out to you dear one...please let us know how you're doing.

sassy1

MichelleP said:

Sassy
I know exactly how you're feeling. My husband was diagnosed with stage IIIB in March 2009 and passed away Oct 13, 2009. He too was on hospice for the last two weeks. I can tell you that looking on it now I wished I had not allowed so much medication. I know he was agitated, but I've since learned it was the "morphine" that caused it to happen.

My heart goes out to you dear one...please let us know how you're doing.

Medication
MichelleP,
I am sorry to hear of your loss.

I have spent so many years looking out for my husband that I guess I am overly protective. I know that we are supposed to listen to the doctors because they have a degree and they always think that they know what is best. I have not given my husband the morphine since midnight last night and he is still not back to himself. He at least recognizes me now but he is still out of sorts. I took my husband for scans every six months for the last six years and in November when the radiologist advised that there was activity, the oncologist said that they have a tendency to get overly excited and that there was nothing to worry about. Then in April, he again went for scans and I always got copies of the reports from the radiologist so that I could review them with the doctor. Unfortunately, when we had the doctor's appointment to review the scans he was backed up and the Nurse Practicioner went over the reports. I wanted to know why the report stated that there was so much activity and she advised that there was nothing to worry about. If that's the case, then why two weeks later when Glenn ended up in the hospital, did the report come back that the cancer had spread to the other lung and he was now Stage IV. The ironic thing was that I didn't find out from the oncologist but I found out from the nurses in the hospital when they would review the daily report for the next shift. I know I'm talking a lot but only someone who has been through it can understand. I just want my husband to be able to at least be himself for the last months of his life. I will review with the doctor on Monday to see if either they can give him something else or reduce the dosage on the morphine.

Thank you for being there. I am so glad to have someone to talk to about the situation.

grandmafay

sassy1 said:

Medication
MichelleP,
I am sorry to hear of your loss.

I have spent so many years looking out for my husband that I guess I am overly protective. I know that we are supposed to listen to the doctors because they have a degree and they always think that they know what is best. I have not given my husband the morphine since midnight last night and he is still not back to himself. He at least recognizes me now but he is still out of sorts. I took my husband for scans every six months for the last six years and in November when the radiologist advised that there was activity, the oncologist said that they have a tendency to get overly excited and that there was nothing to worry about. Then in April, he again went for scans and I always got copies of the reports from the radiologist so that I could review them with the doctor. Unfortunately, when we had the doctor's appointment to review the scans he was backed up and the Nurse Practicioner went over the reports. I wanted to know why the report stated that there was so much activity and she advised that there was nothing to worry about. If that's the case, then why two weeks later when Glenn ended up in the hospital, did the report come back that the cancer had spread to the other lung and he was now Stage IV. The ironic thing was that I didn't find out from the oncologist but I found out from the nurses in the hospital when they would review the daily report for the next shift. I know I'm talking a lot but only someone who has been through it can understand. I just want my husband to be able to at least be himself for the last months of his life. I will review with the doctor on Monday to see if either they can give him something else or reduce the dosage on the morphine.

Thank you for being there. I am so glad to have someone to talk to about the situation.

Hospice, etc.
First let me say that I am very sorry that you are going through this. I lost my husband on Oct. 20th. He was on Hospice for about a month. We had a very good experience with it. At one point we cut back on my husbands morphine because he didn't like the feeling of being out of it. Unfortunately, it didn't help. A nurse from our church told me she thought the problem was caused by the disease instead of the meds. Together we decided to increase the morphine. I'm sure that everyone's experience is unique. I did ask a lot of questions, and the nurse was good about answering my questions. Do you have a primary doctor? Ours was good about answering questions also. This experience is not easy. Watching my husband's deteriorating health was very hard. We learn as we go. Don't hesitate to ask for help. Know that many of us here have traveled this road. Best wishes, Fay