I already mentioned that before Dad was very ill, he made me promise that I would arrange for him to be put in hospital if he ever got to the point where he lost control over his bodily functions. Near the end, when he was too weak to speak and was really just sleeping, it became clear he would not longer be able to go to the bathroom with or without assistance. Because he hadn't eaten for weeks, I was more worried about bladder control than anything else.
Even though I had promised him, I felt that he was really talking about a different situation, and if he was catheterized he would have wanted to stay at home. I called Home Care and arranged for them to come to the house and put in a catheter. They arrived in the afternoon, and with no problems Dad was catheterized. He was semi awake while they did the procedure, and he didn't protest in any way, so I thought everything was fine.
Later that evening, I was sitting by his bed with my sister when all of a sudden he cried out in pain and started writhing. My sister and I were so freaked out, and I realized it was the catheter that was bothering him. I deflated the bulb, and shouted at him that I was going to remove the catheter. I was so scared and I just pulled it out as quickly as I could. He immediately stopped moaning and lay quite still again. As far as I could tell, it seemed like the catheter must not have been inserted properly. I couldn't think of what else it could be.
Once again I called Home Care and told them the catheter had to be re-inserted, and they told me someone would come to the house around 11pm. Sure enough around 11 2 nurses arrived (they work in pairs at night). They quickly put the catheter back in and left. Everything seemed fine and the night passed without a problem. Shortly after 5am Dad cried out again. Once again I pulled the catheter out, and this time I knew it had to be something else that was causing problems.
I wanted to talk to Dr. Harington but it was too early to call, so I spent the next three hours fretting about the situation. I was feeling heartbroken and so sick to my stomach. After everything we had done, I didn't want Dad to have to spend his last days at the hospital. Shortly after eight, I called Dr. Harington. He decided the problem was most probably because of the growing mass, and was just coincidentally happening after the catheter was inserted. He recommended that we have the catheter put in again, and when Dad felt a spasm, I was to inject a medication to relax him. I don't think any of us liked the idea, but it was better than moving him to the hospital. Once again the nurses were called, and I ran to the pharmacy and picked up the meds to be injected.
Shortly after the catheter was put in for the third time, he had a spasm, and started moaning and moving about again. That time I wasn't in the room, and my sister and mother tried to calm him, but he was in too much pain. They were screaming for me and I came racing down the stairs. I grabbed the new medication and moved over Dad and shouted, "Daddy it's okay, I'm going to give you an injection to make the spasm go away." He obviously heard me and understood me because he immediately relaxed and I gave him the injection. I still wasn't convinced that it didn't have anything to do with the catheter since he never had the problem till we put it in.
The next time it happened I couldn't take it. I gave him the injection, but I also removed the catheter. Then I sat by him waiting to see if another spasm occurred. Hours passed with nothing, and I knew then that the catheter was the culprit. I felt so disheartened, and I just wanted to sit down and sob. Instead I called Home Care again and asked if there was any other solution rather than a catheter. The Home Care operator told me she would pass the message on to the nurse on call for our area and would get back to me. Not long after the nurse came to the house. She said she got the message and decided she would come by instead of phoning. When I explained the problem she said there really wasn't much else they could do.
She checked Dad and was getting ready to go when all of a sudden she said, "Have you considered using a condom catheter?" Of course I hadn't! I didn't even have a clue that anything called a condom catheter existed. Once she explained it was just like a condom and fit over the penis with a tube attached to a bag to take urine away, I knew it would be the perfect solution. In fact I was angry. Why would they ever have decided to catheterize him when a simple solution like this was available? When I asked, she told me it was probably because I had requested a catheter be inserted.
AAAAUUUUGH, yes, I had asked for a catheter, but I didn't know any better. They never once asked me if he was obstructed or if it was just a matter of him being too weak to be taken to the bathroom. Had they done so we probably would have used a condom catheter right from the beginning. Like I said at the very beginning of this blog, there isn't a lot of use in people asking what I wanted or needed when I had no clue.
Honestly, I think the healthcare system should be training these people to come and tell us what to expect and what kind of options we can look at! Otherwise it's like asking someone who doesn't know the first thing about farming what they need to take care of 100 head of cattle. They need a bloody cattle farmer! SHEESH
After that we had no more problems, but I still wince when I think of the pain he went through for nothing. Tomorrow I'm going to rant about a whole series of other things that made me mad!
-Swapna
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2 comments:
Dear Swapna,
Frustration!When care takers cannot think out of the box!
At one time when we cared for my mum after oesophagus and stomach surgery I asked for a " footstopper"(kind of a wooden thing to prevent slididng down the bed) to use as a rack to hold all the pillows she needed. I was told no, because they had racks for that and the foot thing was only to prevent sliding. But the foot thing was better because of the way we had to mount her pillows and I knew that because I used them in hospital myself. I quickly changed my application but ofcourse ended up with both the rack and the foot thing and had to take the rack back myself.
When my FIL was dying at home we needed a thing on his bed so he could pull himself up a little, we call that a "parrot" in Dutch, don't know why...but were denied the " parrot" because the bed was not equipped to have the wretched thing...so we had to apply for a different bed first....
Paperwork and bureaucracy and meanwhile as carers we save hem a lot of money and energy to take care of things ourselves.
I am surprised your doctor did not think of the condom catheter...but over here a catheter would only be applied on doctor's orders and also I think if I removed the catheter 3 times I would have had a lot of explaining to do and get a reprimande and certainly the next time they would not have put in another one!
But then ofcourse I would have lied and told them the patient pulled it put himself.
You are right: when health care systems learn you are going to take care of someone yourself they should come over, sit everyone down and educate you and take notes of what you might need and most important: check back reguarly.
Frustrations over silly things just wear you out for no good reason,a waste of time and energy.
Write on Swapna, though it takes me back to painful moments,it helps in a way too. Marcella
Dear Marcella,
Just reading about your tussles reminds me of other little things that drove me insane. I'm going to have a fantastic rant tonight when I come back to work on the blog again!
Feel free to rant on with me!
Swapna
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