I guess this isn’t really and truly a “throwback” since it wasn’t that long ago…….
One year ago today Ken left our home for the last time.
Who knew that would be the case? He’d had some rough times before but had always come through. Things were not good….we knew that. He new that….he didn’t want to go but I don’t think we really had any choice.
He was so weak that night, he could barely walk. I don’t know how he had managed to even make it down the stairs and into his recliner earlier in the day.
Did he know he wouldn’t come home again? Did we do the right thing?
I hated that hospital. There were good nurses and bad nurses, good doctors and bad ones….he was in there for over two months….we’d seen them all.
There were social workers that got conversations wrong and then got mad when we read the files and tried to correct what they’d written down.
He was in a semi-private room most of time…..he had two room mates that died…..one shouldn’t have, at least not when he did.
I spent a lot of time there because I didn’t trust them….any of them. It started on the first night he was in there when they got his oxycodone screwed up…..the pill looked different from the ones we had….I had brought all his meds….when I asked, the nurse said it was whatever he was taking at home….no, I knew it wasn’t….she argued with me until I pulled out the pill bottle….it was more than double the dose!! She did apologize and blamed someone else…..
He continued to have his appointments at the cancer agency….we’d get to go using the Hospital Transfer Service, which usually arrived late so we were always late for his appointments. They originally would send his hospital file with us but after I told them I read it, they started giving it to the driver to hand to the nurse at the cancer agency and vice versa…..what the hell?? It was OUR records…..and I knew that sometimes what they wrote down was NOT quite what they had told us. After that I got the papers signed for them to release ALL documentation to us…..we shouldn’t have had to do that……why was is all this such a “secret”??? After every Dr visit, test, scan, or whatever, this should be an automatic give in that YOU get copies of YOUR records.
The food some days was terrible. Some days his lunch inedible…..I’d go to the cafeteria and get him a bowl of soup and a sandwich. I started taking in Campbell Soups that you could nuke…..just in case they’d sent him cream of cauliflower soup, again! Sometimes on the way back from work, I’d stop and pick up Japanese or Chinese just for a change….and I’d get to have dinner too. Breakfast was usually oatmeal and some floppy, cold toast. I took in a box of his Mini Wheats, so we started to ask for milk….at least he could have those.
Having a different “hospitalist” every week or ten days….each one with a “new plan”. After the first month I met with the social worker asking if we could have the same one since it was obvious we were going to be a “longer term patient”. He said no, they couldn’t. There was only one Dr that we both really liked…..he had a good plan and Ken had actually started to feel better…..then his time was up and we had a new hospitalist…who had another plan. This went on for two months!! None of these Drs would call our Onc, our Onc wouldn’t call them….I was the go between. I hated it. Ken hated it.
They called in a couple of specialists (cardiologist, internist) who were concerned about the state of his health and that any further testing could cause more problems because of the weakness. We started to hear…..”it’s the cancer” more and more. But his latest scan had been a good one….I started to feel like they just weren’t bothering to do anything. I heard more than once that I “was in denial”…..no, not at all. I knew, he knew….we just expected that whatever could be treated would be treated…..and not just put down to “it’s the cancer”.
I think I was actually getting a bit frantic….there was no one to talk to or anyone to listen to our issues….the social workers were useless…..you’d talk and they’d nod their heads, look at you sympathetically, pat your hand and then do nothing, except write down that we were in denial. It was a really stressful time. I felt like I had to be there all the time and I was most of the time. I went up first thing in the morning, to catch the Dr of the week, stayed until lunch, then went to work for 4 or 5 hours, then I’d head back to hospital for dinner time…..so I could make sure he’d eat, and stay until around 8 each night. It was exhausting but I was running on adrenaline or whatever…..I was just doing what I had to do….I didn’t think twice about it…..
The Dr said he shouldn’t lay flat on his back because he did have some congestion…..every morning and evening when I went in he was flat on his back! I’d tell the nurse and she’d say that he just needed to be comfortable…..no, no, no! Yes comfort was important of course, but he was MORE uncomfortable if he got congested and had to cough all the time. It seemed like everything they did just made things worse. You are just another patient to them and they’re the “experts”…..what would we the patients and caregivers know, eh?
I so wished he could have just came home. We did finally get to meet with the palliative care team at the hospital after I talked to head nurse…..they had been told that we didn’t need them, by who I don’t know…..just another crack that opened up. Once his condition had stabilized and he wasn’t needing daily bloodwork and various other tests, he could have came home. We could have had someone come in twice a day….I would have gladly taken time off work but I didn’t have the strength to get him up….I was terrified I’d let him fall so having someone come in would have been great.
Physio was supposed to come everyday….but there were only 3 of them for the entire floor…..sometimes they just couldn’t make it. So I would try to do what they did, but that also involved helping him up.
It was definitely not a good time but it was what it was and we did the best we could. Was it all really as bad as I think it was? It sure seemed so at the time.
I only wanted what was best for him and I could only do so much myself. Was I asking for too much? Was there more they could have done? We’ll never know of course but you can’t stop wondering……no matter how much time goes by, I’ll always wonder if there wasn’t something else…..
I will try so hard to not look back at all this……I’m trying so hard to not go that way and I won’t. I will look back only on the good memories and be grateful for all the years we did have….we were lucky!