I am obviously not a very good blogger. I write a daily newsletter, and that's often all. It's recently gotten less "informative" .. simply because so many diverse people receive it. I got tired of getting negative comments. I get occasional positive ones, and I do know there are some people who enjoy it (or did anyway).
I like blogging - or rather, I guess, I like writing. Even when I have nothing to say. I used to like reading blogs too. But the worse my vision gets, the fewere I bother to try. But, of the 5 blogs I used to follow regularly ... only one is "active" and is very rarely updated. Two of them will be active in the near future and I am very much looking forward to those updates.
I used to post the newsletter here, but so few people were reading it that I just quit bothering. I just update occasionally when I have "random thoughts" and nowhere else to put them.
I have 2 other blogs. One is only where I'm tracking my husband's progress through the hospice experience, and my feelings. No one reads that, but it's OK. It's still an outlet for me.
The other is mainly a Christmas prep blog. I keep trying to encourage followers, but haven't been very successful.
http://mychristmascountdown.blogspot.com
Well, that's all then. Oh, and tell the zombies they're blocked too.
Sunday, September 1, 2013
Sunday, July 21, 2013
Third week of Nano whatever
Do you find it easy
to go offline during vacation?
I don't go on vacation. But I did, if I had something fun and interesting to do, I don't think I'd have any trouble at all being offline. When family comes to visit, or (in the past) when we went to visit family, I wasn't completely off .. but only "on" during down time.
Tell
us about a missed connection.
If I missed it, how can I tell about it???
Do
you havee any regrets about the connections you've made over the years?
Do
you think all things are connected?
I think it's a "small wordl" and there are surprising connections. But all things? Only through God. But not in a physical way.
Do
you feel that you are connected to your community?
No, I really don't. Especially not now, being both retired and a full time caretaker. I still have friends in the community, they they seem mainly to be people I do business with of some sort or another. I think if the reason for the business were to go away, there would be no communication; therefore, no connection.
And I don't much like this question, as it makes me realize just how alone I am.
Saturday, July 13, 2013
More of that Nano stuff
Who was the first
person you met over the Internet?
I can't possibly remember that! It was not only years ago, it was several different ISPs ago! I've never participated much in chat rooms, but I have (in the distant past) been in private chats with ladies I met through some group or other.
On the other hand, the first person I physically met after "meeting" on internet would be a lady in CA. I went out there for my son's wedding, and not only did she and her husband come to the wedding, they very kindly and generously taped the wedding and sent the video to me later. Before I came home again I spent a day with her at her home.
I can't possibly remember that! It was not only years ago, it was several different ISPs ago! I've never participated much in chat rooms, but I have (in the distant past) been in private chats with ladies I met through some group or other.
On the other hand, the first person I physically met after "meeting" on internet would be a lady in CA. I went out there for my son's wedding, and not only did she and her husband come to the wedding, they very kindly and generously taped the wedding and sent the video to me later. Before I came home again I spent a day with her at her home.
Tell us about the
first entry on your blog.
I don't remember that either. More than likely, I long since deleted it!
I don't remember that either. More than likely, I long since deleted it!
I don't really remember, but I suspect probably a combination of surprise and pride that I actually accomplished it. It never mattered if anyone read my blog or not, but I did it anyway.
If you were tralpped in an elevator, which three bloggers would you most want with you in that situation?
What a silly question! If I were trapped in an elevator, why in the world would I want bloggers with me? I would want someone who was capable of *doing* something, not just writing about it!
How do you feel when you're unconnected to the internet?
I hate to admit it, but I feel very "antsy". My computer is my main "connection" with the outside world. Without it, I have little to no contact with some family members and friends. Since I'm more or less stuck at home most of the time .. and the contact I have is almost exclusively with medical personel ... it's very lonely withn internet is down!
Saturday, July 6, 2013
Nano something or other posts
Two of my nieces are doing that blog eveery day thing. Since I spend a lot of time writing useless stuff, I thought I'd do it too. Sort of. I guess it's OK to do several days at once! LOL! (oh wait. hardly anyone reads this .. I can do it any way I want! LOL)
Day 1: Write about the last time you
connected with a friend.
When I was about 5 years old, my
parents moved to a new house. 3 houses
up the street was a family with a girl about 9 months younger than me. We became best friends. We were in and out of each other’s homes and
lives as if we were sisters.
I don’t know when or how the
friendship faded; but suspect it came with school. I was a grade ahead, plus she went to private
school for the first 3 years. By the
time we were in the same school, there was too much “distance”. But recently we reconnected. When there was a notice in the paper that her
father died, I sent flowers and put a message in the guest book. It took nearly 10 months, but she responded
to my message. We’ve emailed, friended
on FB, and had one lovely long phone conversation.
That was the most recent *real*
connection.
I’ve also recently acquired a new
pen-pal. I signed up through a epal
site, and she responded. We’ve written
each other every day, and have been surprised at how much we have in
common. So, the letter I received this
morning I supposed was the last time I connected with a friend.
Day 2: Where is your favorite place
to connect with friends?
I don’t think this is what the question
means, but I have to answer “online”.
Because I can’t get out of the house to meet up with friends … and have
never really done much of that anyway … my email and Facebook connections are
what are important to me.
Day 3: Do you think you still spend
the same amount of time connecting in the face-to-face world now that
socializing is so easy online?
I probably do, only because my
face-to-face socializing has been practically non existant anyway. I have more social contact online than I ever
did in the “real world”.
Day 4: Who do you
feel closest to in your life?
Right now I’m not
sure I feel “close” to anyone. Certainly
not my husband, due to severe health problems which include dementia. Not any of my siblings because we are rarely
in touch (although I’m abundantly overjoyed with I can get together with any of
them). I have a daughter-in-law that I
love dearly, and connect with; I have a girlfriend that I (mostly) enjoy being
with; but she also doesn’t really grasp what my life is like, so frequently
ignores me or lets me down. I really
just don’t feel “close” to anyone.
Day 5: Do
you think it’s easy or difficult for you to connect with people?
Clearly,
it’s difficlut. I’ve been shy since
grade school. In school it was horrible;
and for pretty much all of my school years I only had one close friend. The friend from my junior high days, and the
one from high school, have both died of cancer.
I’ve recently reconnected with my earliest childhood friend, but I
wouldn’t say we are “close”. Our lives,
while there are surprising similarities, have gone in vastly different
directions. Plus, while she lives in the
same state, it’s about 4 hours away.
At one
time I had a job as a tour guide. That
was the hardest thing I’d ever done in my life!
But I did enjoy it. After that I
had several different jobs dealing with the public. I did OK, but don’t handle stress very well;
and like a lot of people, I thrive on praise or compliments. In jobs were they were stingy with that, I
didn’t stay very long.
I spent
the last dozen or so years before retirement in an office. I made some friends there, but no one I was
very “close” to. None of them were
interested in keeping up a friendship (other than very superficial, as on FB)
after I was no longer in the office. I
was (am) still a bit on the shy side .. don’t talk to strangers easily … but
instead of trying to get to know me, some of the girls just branded me “stuck
up”. The ones I got to know seemed to
like me .. but like I said, only as long as I worked there.
Now? Well, I have some friends I made during my
year of being a chocolatier. I had to
quit that because of my husband’s health and my failing vision. Turns out those friends are pretty much just
superficial too. I rarely hear from any of
them; usually only when they have a new catalog or something.
I’ve used
an awful lot of words just to say I don’t make friends easily!
Wednesday, June 26, 2013
Random Thoughts
I quit posting the newsletter here when I realized hardly anyone was reading it. Actually, hardly anyone reads any of my blogs. OK, I don't "advertise" them ... but most of the ones I read weren't advertised either.
It's irrelevant.
My thoughts are about friendship. I persist in thinking I don't have many; but maybe the problem is my definition. I always thought that friends were people who LIKE you, whho enjoy spending time with you, who care about you and what's going on in your life. There are many people that I consider friends because that is the way I feel about them. But maybe I'm wrong. Because by that definition, I don't have many. I do have people who seem to like me ... but the vast majority of them are people I've met online, who don't really *know* me. And if I post (on FB) a cute picture or something, a lot of people "like". But if I'm struggling with something, I get "hugs" ... and also criticism from people who live in other states and have no clue what I'm up against.
Anyway, those aren't the people that concern me. And I'm not really talking about family, although it's a deep sadness in me that I have so little contact (laterally). I no longer get invited to join gatherings - but I couldn't go anyway. And getting anyone to come here is remarkably difficult. So I have to come to the conclusion that Jimmy and I are horrible boring people that no one wants to be around.
And then, there are the "users". People who only like me when I have something to give them, usually money. When I can no longer afford to hand out money, for whatever reason, suddenly these people have little time for me. They don't come visit. They don't call to say how are you (if they do call, it's to complain about something in THEIR life ... I've always been a good listener, but that's still a form of being used). They don't bother to email or tet unless they want something from me.
People *think* they understand my lonliness and frustration. They don't even come close.
And then there's the "friend" who constantly criticises me. OK, I admit I'm not real good with criticism. I guess it's because I've lived with it all my life; and honestly, I'm pretty sick of being told what's wrong with me, or how wrong I am about something. Any discussion I get into with this person turns into a borderline argument. She just knows *everything* (she even had the nerve to tell me exactly what is wrong with a relative and what to do about it ... contrary to the doctors this person has been to! And she doesn't even know the person!)
There is a friend who claims most of all to understand my feelings, because she's been there. Sort of. And yet ... I can go days, even a week at a time, without hearing a word. And when I do hear, or she gets here, it's because she needed to "get away" from her house. There's apparently no regard for what I might need (as in, just to hear something sometimes?)
The one person who seems to understand and care lives too far away to do much about it .. and yet they make more effort than people who live minutes away and "claim" to "be there if we need anything". I'm sorry, but showing up once a week for a free meal with a bunch of disrespectful brats in tow is not what I consider "helpful". Ture, there are those who listen to me complain and whine .... but only because they're a "captive audience" at the time.
I get it. No one wants to hear me complain. This is my life, deal with it. I get that. What I don't "get" is the apparent attitude that "your life sucks, so deal with it, we're busy having fun and can't be bothered". If I didn't feel so isolatedd, so lonely, so deserted ... maybe I wouldn't complain.
There are people who tell me how "strong" I am. Well, NO, I'm not. I do what I have to do. Everyone does. If you have no choice, then you do it. Strong - to me - is when you have a choice, and choose to do what no one else will do.
When I started out writing I thought I had my thoughts "organized". But I just can't seem to put the right words together to express what I'm feeling.
Maybe it doesn't matter anyway.
It's irrelevant.
My thoughts are about friendship. I persist in thinking I don't have many; but maybe the problem is my definition. I always thought that friends were people who LIKE you, whho enjoy spending time with you, who care about you and what's going on in your life. There are many people that I consider friends because that is the way I feel about them. But maybe I'm wrong. Because by that definition, I don't have many. I do have people who seem to like me ... but the vast majority of them are people I've met online, who don't really *know* me. And if I post (on FB) a cute picture or something, a lot of people "like". But if I'm struggling with something, I get "hugs" ... and also criticism from people who live in other states and have no clue what I'm up against.
Anyway, those aren't the people that concern me. And I'm not really talking about family, although it's a deep sadness in me that I have so little contact (laterally). I no longer get invited to join gatherings - but I couldn't go anyway. And getting anyone to come here is remarkably difficult. So I have to come to the conclusion that Jimmy and I are horrible boring people that no one wants to be around.
And then, there are the "users". People who only like me when I have something to give them, usually money. When I can no longer afford to hand out money, for whatever reason, suddenly these people have little time for me. They don't come visit. They don't call to say how are you (if they do call, it's to complain about something in THEIR life ... I've always been a good listener, but that's still a form of being used). They don't bother to email or tet unless they want something from me.
People *think* they understand my lonliness and frustration. They don't even come close.
And then there's the "friend" who constantly criticises me. OK, I admit I'm not real good with criticism. I guess it's because I've lived with it all my life; and honestly, I'm pretty sick of being told what's wrong with me, or how wrong I am about something. Any discussion I get into with this person turns into a borderline argument. She just knows *everything* (she even had the nerve to tell me exactly what is wrong with a relative and what to do about it ... contrary to the doctors this person has been to! And she doesn't even know the person!)
There is a friend who claims most of all to understand my feelings, because she's been there. Sort of. And yet ... I can go days, even a week at a time, without hearing a word. And when I do hear, or she gets here, it's because she needed to "get away" from her house. There's apparently no regard for what I might need (as in, just to hear something sometimes?)
The one person who seems to understand and care lives too far away to do much about it .. and yet they make more effort than people who live minutes away and "claim" to "be there if we need anything". I'm sorry, but showing up once a week for a free meal with a bunch of disrespectful brats in tow is not what I consider "helpful". Ture, there are those who listen to me complain and whine .... but only because they're a "captive audience" at the time.
I get it. No one wants to hear me complain. This is my life, deal with it. I get that. What I don't "get" is the apparent attitude that "your life sucks, so deal with it, we're busy having fun and can't be bothered". If I didn't feel so isolatedd, so lonely, so deserted ... maybe I wouldn't complain.
There are people who tell me how "strong" I am. Well, NO, I'm not. I do what I have to do. Everyone does. If you have no choice, then you do it. Strong - to me - is when you have a choice, and choose to do what no one else will do.
When I started out writing I thought I had my thoughts "organized". But I just can't seem to put the right words together to express what I'm feeling.
Maybe it doesn't matter anyway.
Saturday, May 11, 2013
Life and stuff
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?
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?
Saturday, February 9, 2013
One of the "Random" Things
I send out a daily newsletter to a few dozen or so people. Every once in awhile I hear from someone that they enjoy reading it. Mostly I only hear if I miss a day (and considering how few I hear from then, I do wonder how many of my subscribers just automatically delete). I used to also publish it here (thus the name "good morning"); but when I realized that in general only one or two people ever even opened the page, I quit bothering. (sorry to those two people).
So, I only put something here occasionally when something catches my eye - usually that means stealing a post from my niece. So that's what this one is. :)
Things about ME.
1 are you in a serious relationship?
Yes. Which translates into live-in slave to a disabled and seriusly chauvinistic man.
2. What was your dream growing up?
This may sound stupid, but the one thing I ever wanted most was to be married and have a lot of kids - the whole "white picket fence" deal. Didn't happen. I also wanted to be an artist; but I just didn't have enough talent.
3.What talent do you wish you had?
I wish I had ANY real talent. I can't carry a tune. I'm clumsy. I can't cook. I *try* (or have tried) lots of things, but never found anything I was good at.
4.Favorite drink?
Presuming this is referring to alcoholic? My brother's "old fashioned".
5.Favorite vegetable?
That's hard, I really like veggies. I guess broccoli.
6.What was the last book you read?
I don't read as much any more due to rapidly losing my vision. But I am currently alternating between "Christmas Cookie Club" and "Collateral Damage".
7.What zodiac sign are you
Capricorn. And I have no idea what that *means* - and don't care.
8.Any tattoos or piercings?
Pierced ears; it was done when I was around 18, and they don't match. I've considered a 2nd set, because I LOVE my earrings, but can't get it done to even out. NO tattoos. Never have, never will, just my personal choice.
9.Worst bad habit?
I guess it's a toss up between laziness and losing my temper.
10.What is your favorite sport?
So, I only put something here occasionally when something catches my eye - usually that means stealing a post from my niece. So that's what this one is. :)
Things about ME.
1 are you in a serious relationship?
Yes. Which translates into live-in slave to a disabled and seriusly chauvinistic man.
2. What was your dream growing up?
This may sound stupid, but the one thing I ever wanted most was to be married and have a lot of kids - the whole "white picket fence" deal. Didn't happen. I also wanted to be an artist; but I just didn't have enough talent.
3.What talent do you wish you had?
I wish I had ANY real talent. I can't carry a tune. I'm clumsy. I can't cook. I *try* (or have tried) lots of things, but never found anything I was good at.
4.Favorite drink?
Presuming this is referring to alcoholic? My brother's "old fashioned".
5.Favorite vegetable?
That's hard, I really like veggies. I guess broccoli.
6.What was the last book you read?
I don't read as much any more due to rapidly losing my vision. But I am currently alternating between "Christmas Cookie Club" and "Collateral Damage".
7.What zodiac sign are you
Capricorn. And I have no idea what that *means* - and don't care.
8.Any tattoos or piercings?
Pierced ears; it was done when I was around 18, and they don't match. I've considered a 2nd set, because I LOVE my earrings, but can't get it done to even out. NO tattoos. Never have, never will, just my personal choice.
9.Worst bad habit?
I guess it's a toss up between laziness and losing my temper.
To watch, figure skating. To participate - is shopping a sport?
11.Do you have a pessimistic or optimistic attitude?
I think, most of the time, optimistic. But I get an awful lot of weepy spells. I suppose that's probably more depression than pessimism.
12.Worst thing that ever happened to you?
Losing my parents. They were supposed to live forever.
13.Tell me one weird fact about you.
That's hard. Who gets to define "weird"? I don't think I'm weird, but maybe other people do.
14.Do you have any pets?
Yes, 2 cats. If I thought they'd get along (and my husband wouldn't have a fit) I'd have more. I also have a dog in the yard. He's not "mine"; but I'm beginning to wonder if he'll ever go "home". His owner is supposedly making a place for him; but all I ever hear are excuses. He'd be a really nice dog if h'd quit barking at night!
15.Do you think clowns are cute or scary?
I don't think they're either one. I've seen some that were cute; the only scary ones I've seen were on TV shows were they were meant to be scary. Mostly, I just think they're funny. Usually. Some are just dumb.
16.If you could change one thing about how you look, what would it be?
OK, I'm presuming the question isn't referring to something I have the (supposed) ability to change, like my weight. So I think it would be my hair. It's white around my face, and dark everywhere else, so just looks messy; and thinning nearly to the point of bald on one side.
17.If you won $10,000 today, what would you do with it?
That would depend on if the win was "public knowledge" or not. If it was, someone would be knocking down my door for a "loan" (which, since I don't expect to ever get paid back, I'd give an equal amount to someone else). If no one knew about it, it would get divided between the medical account and my annuity account.
18.What is your favorite place to hang out at?
I don't think I have one. We don't get to "hang out" anywhere because of DH's multiple health issues. It used to be going to my brother's house; but we can't travel anymore, and he's rarely home anyway.
19.Do you believe in ghosts?
Undecided. I've never seen one; but an awful lot of people believe they have.
20.Favorite thing to do in your spare time?
Since I'm retired, in theory *all* my time is spare. Ha! My favorite things to do would be reading and sewing. With failing vision, both are becoming very hard to enjoy.
21.Biggest pet peeve
Rudeness .. followed closely by inconsideration.
22.In one word, how would you describe yourself?
Doormat
23.Do you believe in/appreciate romance?
Believe in? Yes. Appreciate? How would I know, it doesn't exist in my world.
24.Favorite and least favorite food?
I can't pick a favorite, it changes with my mood; but I hate liver!
25.Do you believe in God:
Absolutely, totally, indisputably.
26.Will you repost this?
What a silly question. If I don't, who will know? On the other hand, if I do and no one reads it, what different does it make? LOL!
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