Dealing with a person that has a critical illness is like walking on a fine line. Sometimes it's very hard to know when to step in and take charge or let the patient make the call. I've experienced at least three occasions where I trumped my husband's decision about going to the hospital. I wanted him to go, he didn't want to go. I won.

But the past week Mr B has not been doing very well physically or emotionally. We were really hoping for an improvement in his condition because the doctor stopped his chemo treatments for 3 weeks to give his body a rest. We were very hopeful that the rest would improve his nausea/vomiting/dry heaves. Unfortunately it has just gotten worse instead of getting better. I've also seen a deterioration of his general health this past week. He spends a lot of time in bed and isn't eating or drinking very much. I've also insisted that he start using his walker in the condo because he seems so unsteady on his feet. I'm afraid that I will need to pull rank again and take him to the hospital. We've talked about it several times over the past few days and he keeps saying he wants to wait a few more days to see if he improves. I'm not sure we have the luxury of waiting very much longer.

I'm scared. The other night Mr. B told me that he was scared. We both are scared. Tonight we held each other and cried. We do that a lot these days. How can someone go downhill so quickly? It doesn't seem fair. 
Peggy
10/13/2012 10:06:16 am

Please know you are in my thoughts...both of you...
I don't know why life has to be so unfair sometimes.
Giving you a big hug...xoxo

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Shelley
10/14/2012 09:44:12 am

Thanks, Peggy. I could sure use a hug today. :-(

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mary
10/14/2012 02:22:14 am

You both are in my heart and thoughts, I hope there is some improvement soon. I also am grateful that you are able to reach out to one another, even to share tears. My best to you.

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Shelley
10/14/2012 09:51:24 am

I appreciate your support, Mary. I did take him to the hospital. They kept him for 24 hours and then released him. Their thoughts were:

This is normal for the amount of medications he is on. If that were true then why is he getting worse? These are all the same medications he started taking in June and he wasn't this bad then. I don't agree with the hospital doctor. They did say we could come back but if they aren't going to pursue any testing then we still won't have an answer. All they did was give him some IV hydration. We barely got home and he was dry heaving in the parking lot. Once inside our condo, he took a few drinks of orange juice and he was vomiting it up. :-(

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Mary
10/14/2012 10:51:05 pm

The frustration at times is nearly overwhelming. There is a cough at our house that has continued now for 8 weeks. No fever so no treatment. Then the rib paid comes. ugh. You just want to scream at the medical team and ask if they hear what you are saying to them. Yes, we do understand there is no cure for this yet. But until one is found, I just wish they would treat as symptoms arise as it's devastating enough to have one's life so abruptly put in a new "normal".

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Shelley
10/17/2012 10:11:51 am

I can hear that Daryl's cough is getting worse plus his stomach is upset for most of the day. He can eat only small amounts. We both are very frustrated.

I just wish that the medical profession would LISTEN to caregivers! We see the patient 24/7 so we know when something is wrong with them. I don't feel that I rush in to the hospital at every little thing so when we do go in, I just wish they would try to find out what's wrong instead of saying it's just the medications. I feel like a broken record some days. :-(

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10/16/2012 02:08:32 pm

Not only is this not fair, it is not reasonable. Something is going on, and you sense it and you want answers. Sometimes you have to push the doctor(s) and let them know you are worried and you want them to get more answers. Perhaps he has some kind of infection going on and they should be testing his blood to see what is up - or down. But getting worse means something else is happening... PUSH... intending you are getting those answers. NOW.

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Shelley
10/17/2012 10:15:59 am

Sandy,

When we saw the doctor last week I asked him if it was possible that Daryl had a fungal infection of some kind. He listened to Daryl's chest and declared that he didn't have one. From what I understand you can't tell that easy if they have one. We saw his nurse yesterday and she totally agrees with us that something else is going on. She felt that some kind of imaging should be done in his abdomen. Daryl's doctor is away this week but we are supposed to see him when he gets back. It's time for us to PUSH VERY HARD that this gets looked at. Sometimes I feel that the medical profession looks at Daryl and sees a terminally ill man and just says, "oh well, we are doing our best, can't do anymore than that."

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10/17/2012 01:51:17 pm

i am so sorry for what you and your daryl are going through. i completely agree with your instincts that something is very wrong, and that the doctor who pronounced there was no infection after listening to lung sounds is giving short shrift to your concerns and to daryl's suffering. do all you can to avail yourself of his nurse's advocacy. call her to ask if you and she can have some time to talk and ask what further advice she has to perhaps pursue other avenues. ask her what SHE would do if in your circumstances. she may not feel free to go further than she has already unless she is asked directly to do so. imaging, a complete blood count, a metabolic panel, and maybe a sputum culture might shed needed light into what's going on. always, always, patients and caregivers should feel CARED for, and believe that their physician is genuinely invested in doing so. coming away from an examination, feeling like you have been blown off probably means you were blown off. push hard and assert that this is NOT ACCEPTABLE.

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Shelley
10/23/2012 03:37:27 am

Thanks Karen. We have a doctor appointment on Friday and I plan to push for some more testing. Daryl is starting to feel better the last few days which has been wonderful! He's starting to eat again and hasn't had one episode of vomting or dry heaves for 2 days. He has had some minor nausea but at least that he can manage. So now the question is what do I tell the doctor? I still want some more testing done, preferably an MRI. I'm wondering if his problems with the vomiting/dry heaves might be connected to taking morphine. I can't say for sure but if I think back to the worst times, I think it might have been when he increased the amount of breakthrough morphine he was taking because his back or shoulders were giving him a lot of grief. So if he could have his bones checked to see if there is anything that could be done, he could possibly use less morphine.

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Donna Sutherland
10/25/2012 12:33:10 pm

I feel your frustration and anger Shelley. I remember well the frustration we experienced after my dad's stroke, when the doctors medicated him so much that they immobilized him and strapped him in a wheel chair. He was very capable of walking, but they refused to allow him the freedom. And when we confronted the medical staff, it got worse. They had him so medicated that he refused to eat, became listless, and couldn't stay awake when we came to the hospital. The attitude seemed to be, he's an old man, why bother. When we finally got him released from the hospital, he got better and walked regularly through the halls of the personal care home and the nurse at the home said there was no need for most of the medication. It was horrible trying to get any answers from the doctor or staff at the hospital, so I understand your plight at present. Keep making noises and getting the medical people to pay attention. Thinking of you both. --Donna

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6/10/2013 09:53:31 pm

I think everyone in this event should be a parking space.

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9/5/2013 04:38:19 pm

First time reading this blog, just wanted to say hi.

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