Denial - Are we responsible for his decline??

[Jompy]

Hi, I am a caregiver to a sweet man that has a developmental mental disability and mental health illness. He has been terminal lung cancer that has supposedly spread to his bones and to his liver. He has mets to his spine and was given radiation to that area back in September that helped with his back pain for awhile. He was taking chemo but at the beginning of December he had a bone scan that showed the cancer had spread to several different areas of the bone. Chemo was terminated and the doctor said that he would start to deteriate quickly and would probably only live another two months. He was given morphine for the pain. He did well in December, started going downhill in February and the pain medication was increased in March. He started spending most of his days in bed, and he quit eating. I gave him Ensure in his coffee and he had about a can a day but that was all for the most time. I watched him get thinner and thinner and weaker and weaker. By April, I was told he only had "weeks" left. He continued to get weaker and thinner and needed assistance to get up and use the washroom and he slept most of the day. He was no longer able to dress himself. He complained about the morphine so he was switched to dilaudin. He continued to go downhill and by the end of May, he was refusing to take any pain medication. He had a couple of seizures, which could be because the cancer has moved to his brain or because of withdrawal from the pain meds. The doctor wanted to do a scan to see how the cancer had spread but he refused every type of test, even a blood test. He was started on a steroid to reduce the swelling on his brain.

Now, two weeks later, he is wide awake and alert and eating once again after not eating for 3 months. He does wince when he gets up but the rest of the time he seems to be resting comfortably. Phlegm in his throat has increased but other than that he seems to be having no trouble breathing.

Now I am wondering if it was the pain medication that was causing all this weakness, loss of appetite, loss of weight, and sleepiness. I know the steroids can increase his appetite so that is probably why he is eating again.

I am really feeling quilty because I can't help but wonder if it was the morphine and not cancer that caused all his symptoms. I keep thinking "What if it's not cancer, what if it was the drugs that did this to him" Maybe instead of doing palliative care, I should be treating him with more aggressive "cure" tactics. I need to know without a doubt that his cancer is in fact growing and consuming him but he will not agree to any tests.

He is so frail and weak that I can't see how he can last much longer, but I thought that in March when the cancer destroyed his voice. When he quit taking the pain medication I was so sure that he would be overcome with pain but it turned out to be the best thing.

I am just venting away here. I guess I won't be totally convinced this is the cancer until he has taken his last breath, and even then I think I will always have to live with the thought that he may have been so much better for so much longer if we hadn't given him pain medication.

I am really beginning to hate this job and the terrible decisions that go with it. It's a no win situation.

[recce101]

Hi, Jompy, welcome to the group. You may not be getting any messages from our US mainland members until morning, but I'm in Hawaii where it's a few hours earlier and wanted to reply even though I don't have any clearcut answers.

As you've seen, there's a great deal of variability in how a person responds to treatment, or withholding of treatment, or various pain medications. Any guess a doctor may give as to how long a patient has remaining is merely that, a guess. You're right about the steroid probably being responsible for his increased appetite, and from what I've seen it's not uncommon for a "terminal" patient to seem to rally for a while after some of the stronger medications have been removed.

Please don't beat yourself up or try to second-guess the decision to stop chemo. From your description, that was the wise course of action — for patients who have stopped responding to chemo, at some point more chemo will do more harm than good, and very likely that point had been reached with your friend. Also, I think the fact that he seems relatively comfortable without the strong pain meds should be viewed as a blessing rather than as reason to doubt whether the meds were needed previously. You mentioned seizures, and I think it's possible that his body has undergone recent changes (perhaps some loss of nerve sensitivity) which cause him to feel pain less than would otherwise be expected. I don't have any medical basis for this statement, but that's what seemed to be happening to my father in his last weeks.

Yes, it's an awful job, but you're doing the best that you can, and the main thing is to keep your friend comfortable and not try to revisit every fork in the road up to now. Best wishes and Aloha,

Ned

[jaminkw]

Dear Jompy, please don't blame yourself for any of the events your friend has endured in this terrible journey. The doctors are making the best decisions they can based on what they know. You are simply accepting those decisions. I'm a cancer survivor and believe me, if and when I am in intense pain, I want morphine. I agree with Ned that a number of people do seem to rally some time before the end. Be happy for this respite your friend is having. Help him enjoy it to the extent he can and don't muddy the atmosphere with guilt you don't deserve. How much you care for him comes through in your post.

Judy in Key West

[jstdzy]

Jompy,

Ditto to all of the above. My question was are you his doctor? No? Well it really isn't your fault. It is very hard being someone's caretaker. Don't blame yourself for doing the best you can! You are this man's angel from heaven!

Dana

[fillise]

Jompy,

The human body is a mysterious machine. Even though it can be opened up and we can peek insude with scans and x-rays, we still do not come anywhere close to understanding its mysteries. Why your fried has rallied is likely one of those mysteries.

My sister-in-law's father was very much the way you described your friend when we saw him on Thanksgiving 2006. He was weak, in pain and not eating anything. I was worried that he wouldn't see Christmas. So imagine my surprise when he walked into the house on Christmas morning looking 100 times better than he had on Thanksgiving.

He rallied for a little while before he slipped away in late February. You do the best you can with the information you have. That is all we can do. Don't blame yourself for anything.

Susan

[kukla]

Jompy - I echo everyone's sentiments.

I hope that you also allow yourself some time to feel GOOD that you have been such a strong and positive influence in your friend's life. I'm sure he feels a special attachment to you, and your friendship is always something that you will have had as part of your life.

Make sure to take care of yourself!

Kathleen

[SandraL]

Hi Jompy. I agree with all the other wisdom here. You have done your absolute best as a caregiver. What a gift you have been to your friend. You take care as well.

Sandra

[Nick C]

Please understand, the steroids (and based on how you described the change, it was decadron) totally hop the patient up and make them feel like a million bucks.

My mother was on FIRE on the steroids...eating a lot feeling like she could do anything...was a bit testy. She had the "phlegm" too, but it isn't phlegm, it may be yeast. At least that's what the docs said.

And don't sit there and second guess and say "we should have had him on steroids the whole time" This is unfortunately not a long term solution and they take their toll too.

There is never a perfect solution as a caregiver. If there was, we'd all have taken it. You've done a fine job, you didn't inflict cancer on him. You'vee done just fine, and the ups and downs haven't been within your control, but being there for those ups and downs speaks volumes about you and your character in a good way.

[Barb73]

Dear Jompy,

I have a very, very old friend (over 60 years ago when we first met) who recently lost her husband to esophageal cancer.

She and he had taken the advice and the input from a very prestigious hospital in New York. The name of the hospital would be instantly recognizable as "one of the best." It is part of the NCI 50 best in the nation.

Her husband, according to the doctors was "doing well," and responding to chemos.

She even put off hospice when she saw him failing. She told me that he wasn't dying. Her faith in those doctors was absolutely steadfast.

Her husband died not too long after that. She is inconsolable. We, her friends, are trying to help her recognize that she was not in charge of the outcome. She, unfortunately, thinks that she was. Hopefully, one day, it will become more clear to her.

Please know that all that you do as a caregiver (and I am one who questions myself often) is what is in your power. That, dear Jompy, is all we, as caregivers have, and in the final anaylysis, we don't have all that much power.

God love you and keep you in His Hands,

Barbara

[Jompy]

Sometimes I feel so alone in this journey so it is nice to know that folks in cyberland are listening to my rants. Thankyou all so much for your words of encouragment and it did feel good to get that all of my chest.

Love to you all

Joyce

[michellep]

I had the same problem with my husband. Once he was diagnosed they gave me about 18 different medications to give him. Some were sleeping pills and diuretics. I swear....he was just so "out of it" that he could barely open his eyes and getting him to eat was close to impossible. I was convinced at first it was the cancer itself BUT I watched his behavior very closely and called a different doctor. I told him that in my opinion the problem was actually the meds. He said "Michelle" you should have your medical degree because he is over medicated and severely dehydrated!!!!!!!!!!!!!! Please keep notes and monitor his reactions to ALL meds. My husband is actually responding now and eating very well. I only give him tylenol pm's and diuretics every other day. Good luck to you and please keep us updated!