I pretty much gave up keeping up the blog a long time ago, when it became quite obvious that no more than one or two people were even reading it. On the few blogs I check regularly (with apologies to the many I follow but rarely check), I'm not listed among the ones they follow.
But every now and then I want to say something. Sometimes no one wants to hear what I want to say - so writing on a forgotten blog seems appropriate.
I write stuff on here, then "erase" it. I keep thinking I might actually post this. What if someone reads it, and decides I'm a horrible person? What if I am? There are decisions to be made, and I'm terrified. I don't have to make them alone, of course; but I know I'm enfluencing Jimmy. I can't seem to get him to make any sort of decision on his own (keeps saying whatever I think is best is ok with him). Now I have to wait for Carl to come home from their weekend camping trip to discuss with him too ... and at the same time I'm nervous, I don't want to have to *wait*. Does that even make sense? I have no one with whom to have an objective conversation, and that is SO depressing.
The thing is, we're considering signing him into a hospice program. There are a lot of misconceptions about hospice (and, I have learned, most of that comes from the fact that people wait too late to join the program). Yes, hospice is an "end-of-life" care program. But, people can stay on it for years! Jimmy does have what we believe to be a qualifying diagnosis - he has "chronic rejection" of his transplanted lungs. It can't be treated, because any drugs strong enough to combat the rejection would cause him way more harm than it would help. That also means that another tenet of hospice would automatically be fulfilled: no treatment to "cure" or "eliminate" the condition will be done, because there isn't one. The basic idea of hospice is to keep the patient comfortable, in their own home, and have the best possible quality of life for whatever lifetime they have remaining (which, as I said, could actually be years). The renal failure complicates things but only a very small bit. Being on dialysis for the kidney disease would invalidate hospice. However, if he's admitted to the program for a condition completely different (i.e., chronic rejection; also vascular dementia), then he can remain on the dialysis (because in the end, that won't have any effect on the lung issue; and if her were to get another infection of any sort, it will adversely effect the dementia).
I know I'm rambling a lot; I'm trying to "gather" my thoughts. The objective of hospice is to make the patient (and family) comfortable. One big "selling point" is that if he feels short winded, he could have oxygen all he wants, even though he doesn't actually qualify (or really need it). There would be few, if any, hospitalizations - anything that comes up requiring attention would be taken care of at home. For example, if he got peritonitis again, the PD nurse would come to the house (as she did before. Tthe hospitalization was actually only to determine if there was anything else going on . The testing revealed the vascular dementia, and indicated it's gradually worsening, and also gets significantly worse with each infection or illness. If he were to get pneumonia, they would treat him with antibiotics. All of that kind of thing ocmes under "maintenance". One of the doctors in the hospital implied that that's all they're doing now anyway. Of course, she did not have a very good way with words; she came across sounding like she thought we should just write him off as a lost cause, "pull the plug" and be done. Not!!
OK, I know, I'm still rambling. I can think faster than I can type (and can't read what I'm typing either), so it's hard to get all the thoughts down.The "down" side of hospice is mainly perception. Since they won't change anything that's already being done - and will provide additional help - it's hard to see any disadvantage. One fairly significant thing is that they prefer to have a "DNR" in place. Jimmy has never agreed to one (and the fact that he won't make a decision tends to indicate his feelings). The "fine print" is: if there is no DNR, then if anything happens (for all practical purposes, we're basically talking about a heart attack), any hospice employee here is required (by law) to take all possible measures. But there's another "side" to that issue. Even if there's a DNR in place (and there is, literally, a bright orange piece of paper, completed by a doctor, stating DNR, in plain sight), I (or family member) have the option of moving it out of sight if we feel there is a very real possibility of resucitation with minimal damage. Case in point: Jimmy has had at least 2 heart attacks that we know of; but neither time was he actually even aware of it at the time. He pulled through those without ever losing consciousness; in fact, one of the times (and we can only guess when it was) he never even went to a doctor. The one time he went to the ER, thinking he might be having one, turned out it wasn't. He had a heart attack while in the hospital after a "minor" surgery, and no one eve realized it until after the fact. So, my point is, a heart attack might not necessarily be an "end-of-life" type situation, and depending on the situation I can request action be taken despite the DNR.
I think, as I said (and then got side traced. Again.) is perception. You tell anyone he's on hospice, immediately they assume he's on his death-bed. I'm pretty sure I can get the boys to comprehend and be on board with everything. But siblings might be another story. I'm truly afraid his sisters would make a huge fuss. And, when they realize they have no say in the matter, will be nuisances to say the least about "helping", coming to see him; and worse - planning his funeral!! Good grief. Am I ready to deal with that? (not deal with a funeral - I know I'll have help when that time comes. But to deal with them????).
Another thing to be concerned about, regarding perception, is both my and Jimmy's attitude. He's been depressed for a long time; and his doctor telling him he would never get any better very nearly put him "over the edge". It's taken a lot of "pep talk" and encouragement to get him to comprehend that not getting better doesn't have to mean getting worse; but only if he's willing to put some effort into it. It's been a bit of a struggle to remind him of all the things he *can* do, and will be able to do as the weather gets nicer. He's looking forward to DGS14 summer visit, so that helps. My hope is, also, that making him more comfortable (i.e. oxygen if he wants it; more help than I'm able to give with everyday things like baths; plus a bit of relief for me so I'm not so crabby) will make him less depressed and more interested in things going on around him.
But me? What about my perception? I had a lot of questions, and the lady had good answers for me. But am I really pushing this just so I can get some relief? Is he rally ready for this or am I just being selfish? And by questioning myself - am I in denial? Am I ignoring clues and hints from all the doctors? Or am I being paranoid in thinking that?
Some questions just don't have answers. Unless DS has some strong objections - and I don't know of any reason why he would - we'll probably go ahead with the hospice. There is still the very small chance that they'll say he doesn't qualify. I guess that would be a good thing! LOL!
I really would like to be able to talk this over with someone objectively. But basically, there's very few people in my life to have any sort of conversation with. I have one *friend* who is convinced I'm too stupid to breath and it's her duty in life to instruct me on the correct way to do everything. (short story example: email conversation - she mentioned she had forgotten to get a med refill and was annoyed with herself for running out. I said I love the pharmacy I use because it tracks all prescriptions, auto-refills them when due (and contacts the doctor when a new auth is needed), and calls to let me know it's ready. She said she was capable of keeping track of her meds, and her mother's and her husband's when they were alive (and didn't this whole conversation start with her saying she'd forgotten one!!). I said I had more to keep up with than her 3 combined, all due at different times, as well as a lot of other responsibilities, and I appreciated the convenience. Her response to that was that "a pharmacist" said he didn't have time to "babysit" customers who couldn't keep up with their won meds. That, to me, really felt like a slap in the face!! I chose not to continue the conversation). When I insisted on bringing DH home from the hospital (instead of letting them place him in a rest home), she went on and on about how putting her mother in a home was the best thing to do and how happy she was (mother) and how many friends and activities she had, etc. There is no "objective" conversation there, because she will always question every decision or observation I make.
She also criticizes me for being "too busy" for her to come over to visit. Well, the thing is, when she comes I have to spend all day just sitting and visiting (mostly listening). She says it doesn't matter if the house is "clean", but it does to me. But I can't get up and down to do the things I do all day. She's a good person in a lot of ways; but she can be highly critical of me, my family, my friends - and maintaining a friendship is, honestly, stresful!
Then I have another friend. Wow, that makes 2. She's actually much younger, and that occasionally becomes an issue - but not often. However, anytime I say anything, she says "oh that's just like" .. and then goes off on some story of her own that has absolutely nothing to do with what I was saying. So, I give up trying to talk and just listen. We used to be able to go out and have fun together. Between having to keep watch over DH, and vision making it dangerous to drive, there's no fun any more.
There's family of course. The boys "care"; but they all have super busy lives, and can't just drop everything if I get whiny. I have siblings that I have very little contact with. It's not that we are "estranged" or anyting like that. We just have totally different lives. I rarely hear anything from any of them. And it's not that they don't care, but honestly, all they want to hear from me is that everything is just fine.
No matter how many times I start this over, it turns into a whine-fest. ( I'm exhausted and lonely and sad and frustrated. I don't know if hospice is the right direction or not. I don't want to sign him up for selfish reasons on my part; but I don't want to deny him services that will make his life easier and more comfortable either. Are there, in the end, any "right" answers?
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