Friday, June 03, 2005

Drowning ....

So much has happened since my last entry. I don't know where to begin ...

First of all, my father-in-law did pass away after all. It wasn't necessary ... and it should not have happened. I've told my own family that I do *not* want to be put on Hospice - no matter what condition I'm in. I couldn't believe what happened to him ... I still can't.

In my last post, I mentioned that he was no longer in imminent danger of dying. The pneumonia cleared up thanks to the use of strong antibiotics, and he was no longer coughing and rattling anymore. He appeared seriously confused though, and was even having hallucinations. This was a great concern for me, because I couldn't understand why it would be happening at all.

As I watched him day by day, I began to think that the medications they were giving him were causing the problem. One night, after he had spent the day so drugged up that we had been unable to keep him hydrated or fed, he began to wake up a bit, and was confused and agitated as he came to. The nurse came in and immediately said she would give him something to calm him down. Something went "click" in my mind, and I told her not to give him anything, that I thought he was agitated because of the medications they were giving him. With a superior attitude, she informed me that it wasn't possible - he had been given the medication during the night, and that since it was now evening, it couldn't still be the medication causing it. She even stood there, right at his bedside, and gave me a lecture on the "dying process." Imagine what my poor Father-in-Law must have felt like, listening to her talk about his death. Talk about medical arrogance. However, she did respect my wishes - if not myself and Pop.

Well - what do you know! The next day, he was up in a chair, sitting in the hallway, and just as cantankerous as he could be! In fact, since he'd always been a very laid back, pleasant fellow, this was quite an eye opener! Pop wanted to go home ... and if he couldn't go home, he wanted to know why! As I verbally sparred with him, I was rejoicing inside because I could see that he was definitely "back" with us again.

I did some research that night on the medication he'd been given, and discovered that it (Ativan) often caused the elderly, or very ill, to react as if they've been given much higher dosages than they had, and it also could last far longer than normally expected for a theraputic dose. Also - it was capable of causing all of the side effects we'd noticed in Pop.

Over the next several days, he continued to improve, even asking the nurses to walk him to the bathroom. Although he didn't feel like eating ... (he had been difficult to feed for years, but had apparently been eating enough to keep himself alive, although we were always concerned about his diet) ... he would eat everything he was given when told that he needed to get his strength back if he wanted to come home. He himself acknowledged that the most difficult part of going back home would be getting himself in and out of the bathroom.

We began to make plans to take him home. However, I began to worry. He had been placed on hospice when we thought he was dying ... because his doctor was too stupid to know the difference between a dying man and a man who was under the influence of Ativan. The attitude of the nurses in the rehab was not at all condusive to getting Pop back on his feet. They were quite willing to "Ativan" him to death. I was concerned that we would not be able to get the people in physical therapy to help us get him walking with a walker, because of his being on hospice. It mattered not that he was improving, clear minded, and that he was no longer dying. Listen, if you are a viable person who's mistakenly been placed on hospice because of a doctor's error, I guarantee, even if you obviously begin to recover, you're going to die anyway .... they'll see to it. At least, that's what happened with Pop.

He improved daily, and things were going so well, until the day he came down with the runs. I had been going back and forth every day to be with him, and a few weeks before, my husband had been sick with them for about 3 days. I had had a very brief problem myself - less than a full day - and on the same morning that Pop got the runs, my mother-in-law had also had them. Of course, when I went in to see him, I was told that he had the runs because his "body was shutting down." Well ... no .... he had the runs because he *caught* them from us. This is just one example of the obstructionism we were facing in trying to keep Pop alive after he was placed on hospice. To them, every little thing that happened was part of his "death process."

I told my mother-in-law and sister-in-law that he needed to be taken off from hospice, or they weren't going to treat him for his runs. I'm not sure why they didn't act immediately. I don't think they understood how much of an obstacle to Pop's recovery the nurses' attitudes had become.

Pop got worse quickly ... and I mentioned to my mother-in-law that he was acting as if they were giving him Ativan again ... but as sick as he'd been, I couldn't imagine why they would do that. He certainly wasn't trying to get out of bed on his own anymore ever since they'd stopped giving it to him before. Also, I'd raised such a stink about it ... I couldn't beleive they'd give it to him again. I should have demanded to know. I was hesitant because I was already in serious disfavor there, and I simply couldn't believe they would actually give it to him in his condition ... I wish now that I had had the gumption to ask.

I found out a day and a half before he died that they had, indeed, been drugging him with Ativan. We hadn't been sure if his state had been due to the virus ... and it had been impossible to get anyone to give him anything to stop the runs.

Once I found out that he'd been given the Ativan again, I lost my temper as I stood at the nurses' station. It's not that I didn't want him to be given whatever medicine he needed - it's that I didn't want him to be given anything that would worsen his condition, or make him unable to be hydrated - or fed. You don't give someone in renal failure a nephrotoxic medicine unless there's absolutely NOTHING ELSE you can give them. You don't give ANYone ANYthing that prevents them from being hydrated even if you DO think they're not going to recover. You simply do *not* make things worse - or hurry them along. This would be criminal under any circumstance, and beyond unconscionable with someone who's viable. Food, water ... those are not "extraordinary measures" ... those are standard care for the comfort of those who are dying - or even those who are well!

That day, the hospice nurse dropped in. She and I went into the hallway, and were talking. This was *before* I found out about Pop being given Ativan again. I sincerely believed that he felt really sick from the virus, and that he had given up or come to some sort of decision on his own. As we talked, I mentioned that I could smell and see that his kidneys were shutting down, and that it would only be a matter of days before we lost him. We had left the room to talk so that he wouldn't overhear what we were saying ... although he seemed pretty out of it at the time.

To my horror, when I walked back into the room after that conversation, his eyes were open and he watched me walk back in. I could see from the look on his face that he had, indeed, overheard the conversation. With my heart in my throat, I went up to him and told him that I wanted him to start eating and drinking - NOW! I nearly cried when he told me that he was trying to, and had asked for bread (toast) a few days back, but no one had brought it to him. If that had really happened ... it sure wasn't on *my* watch. But the poor dear heart ate and drank everything he was offered for the rest of the day ... and was uncharacteristically meek and quiet. Pop had overheard me ... and he didn't want to die.

The next day, he was very very bad. We were no longer able to rouse him, and it was difficult to keep his mouth from drying out. I kept dipping those little lollipop-looking sponges, and doing the inside of his mouth, and between his teeth and lips, hoping to keep him comfortable. We went home that night at about 8 PM, as usual. We got a call from my sister-in-law near midnight - he had taken a turn for the worse.

I got dressed and rushed back to the rehab. Shortly afterward, my mother-in-law and sister-in-law, Kay, came, as did Kay's husband, Eddie. We sat in vigil with him all night. At about 4 AM, I drove Eddie to his house so that he could get some rest and make phone calls, and I stopped at home and woke up my family to tell them that they should not wait too long after daylight to come to the rehab. I felt that he would live until the sun came up ... but not much longer. My husband showed up just a bit later, and then Gary, my brother-in-law, also showed up, just before dawn.

Pop's breathing slowed to about 12 breaths a minute ... and it became difficult to tell if he breathing any more. I got up and put my hand on his chest at the base of his left rib cage, and I could feel his heart against my fingers ... beating very feebly. I knew that we were in the final moments, and as I turned to go back to my seat, I mouthed silently for my mother-in-law that it wouldn't be much longer. I sat down, and almost immediately got back up again, because I realized that I was completely unable to gauge what was happening from the foot of the bed. I placed my hand on his chest again, and this time, I couldn't feel anything any longer.

He was gone. My last Daddy was gone.

I'm going to post this because it's been sitting in draft form for such a long time (a month,) but I'm going to keep coming back to it for a while and adding the details I've missed. There are things that happened before my father in law died that need telling. Also - I haven't even mentioned that during this time, I had a cancer scare ... and my youngest son got married. Yes, I have a lot more to add ...


Blogger Kim said...

If there is one thing I have learned in all my years of nursing it is: LISTEN TO THE FAMILY!!! No one, and I mean no one, knows better when something is wrong....a good nurse can sense it but the family KNOWS it!

I am so sorry you had this experience with Hospice. I had a neighbor who had "been in" Hospice five times. That tells you something...

Sunday, November 20, 2005 9:33:00 PM  
Blogger Moof said...

God bless you, Kim. I was thinking of editing this particular post, because it's still such a tender spot for me.

I very nearly removed it yesterday. Now I'm glad I didn't.

What happened with Pop was like a black comedy - it was almost as if people were deliberately being obtuse.

Just a few hours before he died, the nurse who had chosen to start his Ativan treatment again finally got to meet "the troublemaker" who had complained about the Ativan to begin with. She lit into me at Pop's bedside, as if I had wanted to see him suffer, and was trying to prevent the staff from taking care of him. I can only hope that poor Pop wasn't able to understand what was being said.

Only three days earlier, I had been reassured by Hospice that the Ativan was no longer on his chart, and that they would be careful to monitor any similar medications to make sure that they weren't preventing him from being fed and hydrated - or causing him to hallucinate, and become restless and unmanageable.

Vicious circle. They would medicate him, he would react badly when the medication would begin to wear off, so they'd medicate him again to "keep him calm." Meanwhile, while on the Ativan, there was no feeding him, no giving him anything to drink ... and no IV's ... since he was on hospice.

When he wasn't on the Ativan, he was completely lucid, making efforts to eat and drink, his memory was sharp, and he was asking to be walked to the bathroom. He was looking forward to going home.

Thank you again Kim. Also - I want you to know that I love your blog. I visit daily, and really enjoy your posts. Your "Yearly Visitor" post makes me cry every time I read it. God bless your heart.

Sunday, November 20, 2005 10:40:00 PM  

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