Technically, this is not the first day. But today I signed the permission form to get medical records; so things "officially" move forward at this point.
The word "hospice" was first tossed at us back in February. Thinking back, I guess it's kind of a surprise it wasn't mentioned earlier. At a regular clinic aplpointment in February, Jimmy's lung function was decreased. The word "rejection" was said to him in some context. Unfortunately, I had an eye appointment at the same time, so wasn't with him to see the doctor. And his son, who I *thought* would be there, got misplaced. So, we have only his "iffy" memory and the summary I later received to go by. At his next dialysis nurse visit, he told them he'd been told he had rejection (again, I don't really know what he specifically said). At that time I was presented with the option of hospice. Well, of course, my immediate reaction was that they were over reacting, we were nowhere near ready for anything like that!
He was scheduled for a bronchostopy (sp?). The results I later received stated "no rejection". Meantime, he developed an infection. We ended up taking him to the hospital again - not directly because of the infection (because basically, the hospital did the same thing the dialysis nurse had been doing, giving him antibiotic in the dialisate). He was having some severe confusion issues, and his doctors wanted to run additional tests.
Now, for years he's been being told that his loss of memory and balance were side effects of the anti-rejection drug he's been on all these years. There are other drugs available, so we'll probably neveer know why they never tried a different one. So, many tests including neurological were done at the hospical. We were finally given an official diagnosis of "vascular dementia". We are told it is a result of the drugs plus "mini" strokes over the years. His general health - including mental - is gradually declining; but every time he gets sick, everything takes a drop down before continuging the gradual slide.
Once we had a diagnosis, I pushed to get him home. There were doctors who were not completely in favor of sending him home (as opposed to live-in rehab or even a nursing home or similar facility). They warned me it would be hard ... he should not be left alone due to confusion plus high fall risk.
When he was discharged from the hospital, hospice was mentioned again. But, I was told he wasn't eligible due to being on dialysis. One doctor even told me that they were doing nothing medically for him, were merely keeping him alive (with the dialysis). She implied that she though we should "pull the plug". I was not impressed (to be fair, she was nice, and perhaps she didn't realize how she was coming across).
After a couple of months of extreme stress (it's really hard to never leave the house except when he has an appointment, which then involves the hassle of getting him in and out of the car, plus having to just sit in the car and wait so I can run errands, pick up medicines, get groceries). Then the dialysis nurse broached the subject of hospice again. She said she thought the information I was given was wrong, so I OKed having someone contact me.
Last Friday a nice lady, Holly, came out and she and I had a long conversation. She was able to answer a lot of questions. Then I spent the weekend talking things over with Jimmy. He may not remember much of what was said later , but he did seem to comprehend while we were talking about it. I'm completely satisfied that he did understand (as best he's able) what would be involved and is OK with the whole process.
Carl came over last night, and had a discussion with him. His concern (same as mine) was that his dad not think we were just giving up on him and throwing him away. He was also satisfied.
So, as I said, today I signed permission for medical records.
I will try to use this blog to track progress from here on out, however long that is (or until my vision no longer allows it). I will appreciate any comments; if anyone has experiences or information other than brief comments, please send to olgramy@inbox.com
And if anyone is wondering why the odd name ... I had a hard time finding a name that was "acceptable" to Google! LOL!
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