Isn't that a good question? I think it's to relieve the guilt on the part of the visitor, not anything for the patient. My last post was Wednesday. Thursday, both of his daughter, son, his wife and 3 of 4 kids came to visit. My sister, her hubby, my brother, his wive and 2 kids came. It was a complete total zoo.....and NOT what he needed that day.
But I can't deny them. I can't tell them this is not a good time. So I let groups of 4 in at a time. UGH!
His son, the PharmD - the guy who has a doctorate in pharmacology, acted like I didn't exist. Seriously! He told his dad that he needed to have the defibrillator implanted. "That's what's best for you, dad." And he has NOT seen is father in 2 years! Yep, I just wanted to spit nails, but I kept my mouth shut and smiled.
His daughter did her usual drama thing, "oh daddy, oh daddy, you have to promise me you are going to get well. You have to - for me!"
Enough said about them?
The dynamics were interesting to watch. His family was very dramatic, sad, acting like they were at death's door or a funeral. My siblings just talked to him like it was a normal day. Told them things they were doing or working on. Had a very interactive conversation with him as though we were home, sitting in our living room.
That afternoon, he told his docs that he did not want the life vest and he did not want the implant. We had done some research. With the implant, you cannot use a cell phone, iPad, ear buds within 6" of the implant. He uses earbuds all the time and loves to rest his iPad on his chest to watch movies (due to his poor vision). We talked about it. I told him the choice was his. I don't know what I would do if it were me and I told him that. He made the decision and while I'm not sure I agree 100%, I have to support his choice.
I suppose when it's your heart and someone tells you the vessels are 100% blocked, you have a big enough scare without considering the options for surgery. Would his kidneys survive? Would his heart survive? It can be minor, but it can also turn into a major operation. He has opted not to do it. And with that decisions, there just isn't anything else they can do for him. So he was discharged home yesterday under hospice care.
The discharge process took from 10 am to 2 pm. Mostly waiting for one department or another to come and have him sign their set of papers. We were home by 4 pm and hospice came. They had an intake person who was here asking questions until 6. Then an RN came and did her complete evaluation and didn't leave until 8 pm. After that I still had to run to the drug store and buy a pulse oximeter. I had no idea that they cost $65!!! And then go get a few groceries. I got home at 9:15 pm and then had to deal with the pups.
All night long they whined and whimpered. They wanted in bed with him. I have told him for years that he cannot let them sleep with him in case something like this happens. Well, he never listened to me. After a night with very little sleep, I wasn't in a good mood this morning. His brother is here (lives about 800 miles away) and staying for a few days. The 3 of us came up with a plan that the pups will go home with the brother. Hubby will get himself well enough to take care of them and we'll go get them. That will give me some relief because I told both of them that there's no way I can care for the dogs and for him.
I know it will depress him something terrible and he will miss them horribly. But one has to look at the overall situation. He is a "fall risk". We now have oxygen lines throughout the bedroom. He does not need to be getting up in the middle of the night to tend to the dogs in his condition. We tried having them sleep in my room last night and they just whined for him. Literally whined all night long.
I'm letting his brother help him this morning while I take a bit of a break from it all. I'm just so exhausted that I can barely function. Health wise....he had a bad night. His oxygen level is good, but his heart is beating about 112 and that is making him hot. We have the AC set to 70 and I'm wearing a jacket (it's about 95 outside!). We asked hospice for anti-anxiety drugs and pain meds. I don't know if they are coming back today, or if it will be Monday. The intake people didn't know.
I'm taking this one step at a time. Not sure what else you can do. I don't like the idea of hospice staff coming and going. It feels like an intrusion into our life. I'm a pretty private person. I don't know how I feel about people coming when there is a "death call". He needs to see his family and his friends.....I just wish they would come on a regular basis.
Today, I'm puttying and painting the slat wall in his room. Then I will put up shelves. For all the medical supplies they are bringing in. So I should back up. Thursday night, 2 of my sisters came over and we gutted his room. Replicated what he had in there out in the garage. He has a 3D printer and does a lot of electronics. We had to. With hospice staff and oxygen....there just had to be more space. That left a slat board wall empty. Today I will get that set up and then we have to move his computer and all those components to another table. I can remove a huge table and get a recliner in the corner as he's not comfortable in his bed.
It's an interesting concept that life goes on when death is in the room. Will he improve? No idea. He could go like this for a few years. He could die today. But the rest of life just keeps on going on. I will try to update more often because keeping notes is good therapy for me - and it gives all of us a record of what the last days are like.
DW
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