Into Darkness

I was born with very poor vision.  The fact that I could see "clearly" at something 3 inches from my face is probably all that kept me from being "legally blind".  From early in the first grade - only 5 years old - I had to wear "coke bottle" glasses.  
For a brief spell when I was in college I had contact lenses.  That was before the days of "soft lenses" or disposable ones; but oh! the freedome they gave me.  But when I went to work in an office the freedome ended .. my eyes could not tolerate the dry air and flourescent lighting.  So back to the thick lenses, but at least I could have them tinted to help with glare.
At some point, maybe 20 or so years ago (I really do not remember except that it was during the time we lived in Edenton) I had a "spontaneous detached retina" in my right eye.  I had surgery, but it left me with a mostly blind eye - only some peripheral vision.
Fast forward another 20 to 25 years, give or take a few.  I developed cataracts.   Apparently they had been developing for quite some time; but without eye care insurance, I was a long time between appointments.  When I got to the point I could no longer ignore my fading vision, I went to an eye doctor - who promptly sent me to a surgeon. 
I had some sort of minor tear in one eye that had to be repaired, resulting in 6 weeks of no computer, no reading, no bedning, no heavy lifting. Once I got past that, I had the cataracts removed - one eye in December, the other in January.
For a very brief wonderful time, I could SEE!  I still needed glasses for reading, which was extremely hard to adjust to.  When the cataracts were removed, the lenses in my eyes were replaced, an it reversed my vision from near-sighted to far-sighted.  Never again can I read by simply holding a book close to my face.
After recovering from the cataract surgery, I went to a regular eye doctor to get prescription reading glasses.  I actually could "make do" with dollar store readers, but needed something better in order to keep working.
That's when I was diagnosed with glaucoma.  At that time, it was not noticeably effecting my vision.  That was around 5 and a half years ago.  The doctor then told me he thought I'd be completely blind "within my lifetime" (based on me being in my early 60s then and with at least a 20 year or more life expectancy).   He did not tell me how fast my vision would fail without actually being "blind".
I now see a glaucoma specialist about 3 to 4 times a year, and have a bunch of different eye drops to control pressure.  But the fact is, my vision has deteriorated drastically.
I can no longer drive (and technically no longer have a valid license, although the one I have expires in December - as long as no one were to run it with DMV, because it was revoked at the end of September).  Sitting here at the computer is difficult and frustrating.  One of the effects is that everything "fades" .. so light blue print is impossible to read; also anything small is impossible.  Watching television now is just listening and seeing a blur of colors (if I really want to "see" something, I have to sit or stand within about a foot of the screen; it's still blurred, but discernable).
I walk through my house and see mostly shadowy areas with pools of light where lamps or windows are.  I know my house well enough to know where things are (and absolutely Haate for anyone to move my things around).  I'm learning what things are more difficult to do (have you every tried to put toothpaste on a toothbrush when you literally couldn't tell where or how much you were getting?  Trick: squeeze the toothpaste onto a finger, and then squish it onto the brush).
I can no longer take my husband's blood pressure or temperature; and God help me if the alarm on the cycler goes off, because I can't read the screen that says why.
The people in my life day to day don't really grasp my frustration.  The one friend has been helping me go through freezer and pantry, to get rid of things I know I'll never use or are out of date.  I think she vaguely "gets it".  And my daughter in law has helped me go through mail and such; but she lives 2 hours away and they don't have time to visit.  My husband isn't really able to comprehend what I can and can't see; but then, he has multiple health issues, including dementai.  I'm satisfied for him just to know who I am.
Even when people close to me begin to understand what I can and can't see, they still don't really grasp what it's like on a day to day basis.  I want to clean my house, but literally can't see if a given surface is clean or not.  I go through the motions and hope for the best.  
I can't sew any more.  I actually can put my face close enough, and with a finger guiding, I can run the machine.  What I can't do is get thread through the tiny hole in a clear bobbin so I can wind it; or rethread the machine.   And no one really has time to just sit there with me to do that.
My world is gradually getting darker, and there's nothing I can do about it.   I trip over things I can't see (like that legs to my husband's bedside commode - they spraddle out, and I've broken a toe on it before, and always afraid I will again)..
It's barely daylight now.  Time to stumble through another day in my faded, out-of-focus world.
There were so many things I thought I'd get to do when I retired.  Instead I'm 24/7 caretaker for my husband, and no longer able to enjoy most of the things I wanted to do.  I don't resent caring for him (but will admit to being very tired).  I just feel sad  And very alone.

Random Thoughts in a Sleepless Night

It’s 3:00 AM and I’m awake.  I don’t know why; I want desperately to be asleep.  I seem to be developing chronic insomnia.  I don’t know if I’m falling victim to what I’ve accused DH of for years: not sleeping at night because of sleeping/napping too much during the day.    Hve I got it backwards?  Is the overwhelming daytime exhaustion because of not being able to sleep all night?  And why?   I was so tired and frustrated with DH waking in the middle of the night (anywhere from 1:00 to 4:00 on average).  But the new sleeping pill is working it seems.  He does occasionally wake up (rarely that I need to go in and get him settled back down).  But I’m still waking up and can’t get back to sleep.  I don’t dare taken anything to make me sleep; not even a glass of wine.  I need to be able to wake up if he does call me, or if the cycler alarms.  I guess I need to try to avoid, or at least limit, the daytime napping.  And the only way I’ll do that is by getting busy doing *something*.  And that’s hard to do when you’re so exhausted it hurts to move.

When I wake up in the wee hours and can’t get back to sleep, my mnd seems to go into overdrive.  This is an attempt to shut it down by going on and writing out thoughts (and by the way, starting the washer and getting a sandwich – to do something productive since I’m up, and hoping the peanutbutter and jelly will let me get back to sleep in a little while).

I keep being asked what am I going to do.  It seems people are afraid to be specific – do about what?  When the nurse asks, she seems to be asking what am I going to do when I can’t take care of DH, either because his condition deteriorates or because I’m no longer physicaly able.  I can’t answer her, because I don’t anticipate that happening.  Denial?  Perhaps; but I just can’t fathom any possible way for any other situation.   If he were to get to the point of literally not able to get out of bed, even to get on the commode; and his dementia progress to where he’s completely “out of it” or no longer recognizes family … I firmly believe (and *think* DSS does too, though it’s harder for him to accept) his wishes would be to just stop doing the dialysis, and let him slip away naturally and peacefully.  The only thing he’s ever stated was that he doesn’t want to be a “vegetable”.  (mostly he’s completely refused to have “that conversation” in any form whatsoever.  No, that’s not completely true.  He has stated that he thinks “elaborate” funerals are a waste of time and money)  But – funerals are for the living).

Meantime, I just don’t see any way of anything changing.  I’ve done the best I can to make arrangements to cope with my vision problems.  Many people know about the problems (I will need someone to stay here with Jimmy – someone physically capable of dealing with him if necessary; and someone to drive me somewhere to get the glasses fitted and ordered.  And then I’d have to do it all over again when they’re ready.  There are none of those “one-hour” places even remotely close to us).  So far – everyone is just way to busy.

I suspect some of the “what are you going to do” questions are vague references to after DH is gone.  I can’t answer those.  I can’t even imagine life without him.  I’ve been married to him half my life (and I know that’s not all that long compared to other marriages, but I can only think within my own experience).  Even the way his is now, without him here my life would have a big hole in it.  I guess I would wander around the house aimlessly for awhile.I know the time would come – quickly – that people go their own way and I’d be mostly ignored.  I think the “kids” (DS and DSS, and their respective spouses or SOs) would try to pressure me to move.  But not because they don’t want me out here alone, but because they don’t want to be bothered having to come way out here if I needed something (like going to the grocery store?)

When DH was last in the hospital, one doctor made a comment – I can’t remember it exactly – the gist was “he could last six months like that”.  That was almost immediately after her comment “we’re not doing anything medically for him, we’re just keeping him alive”.  I thought that was a bit of a crude statement, so her comments after didn’t fully register.  I am not sure if she was saying she thought he wouldn’t live more than six months past that time (which he already has); or if she was implying he *might* last six months if the dialysis was discontinued (which the PD nurse told me would most definitely NOT be the case – maybe up to 3 days).  All of the doctors on that last visit seemed to imply that we should stop the dialysis (or at the very least he should go back to hemo, which he is adamantly against.  Besides which that would create a whole new set of problems.  And his original PD nurse flatly stated she wasn’t sure he could survive hemo now.  I didn’t ask if she menat emotionally, or because of blood pressure issues, or what).

Hospice was mentioned, almost in passing – just to state that it wasn’t an option because he’s on dialysis.  That also seemed to imply they thought he wouldn’t last more than six months.

Ironically, it was the dialysis center who started the process of getting him into hospice.    It took 3 tries to get him accepted.  On his last visit to the pulmo clinic at Duke, the doctor said she thought hospice was a good direction for us, and she would do anything – sign anything – needed to get him admitted.  In the end, it was her signed admittance form that got him accepted. 

When we discussed it, she made sure to explain that the six months was only an estimated time frame, and could be renewed.  Ever since then I’ve wondered: did she really think he had six months or less?  Did she not want to just come out and say that to us?   (he was already a bit depressed because she has flatly stated he would NOT get any better).  Or was she really just reassuring us that it was just a way of getting him admitted into a program that would supposedly make things easier for us? As I said, he’s already more than six months out of the hospital.  And while his condition has clearly deteriorated, I honestly don’t think he’s all that near “the end”.  Apparently neither does his nurse.  (and I’m constantly afraid that he really isn’t “bad enough” and they’ll drop him from the program.  Not that I want him to be that bad; but it does terrify me to think of not having the nurse once a week, or the CAN 3 times a week; of having to pay for his oxygen, hospital bed, and wheelchair; of being completely on my own (and unable to drive) to take care of him.

He was admitted on July 9^th.  The initial six months takes him just past the end of December.  That’s about 2 and a half months from now.  No, I don’t think he’ll be gone in that time.  But I will say, I’ve long suspected that he’s more likely to succumb to a heart attack.  He’s had 2 – the last one while he was in the hospital (Feb. 2011) which we were told was a “big” one. A doctor told me many years ago that lung patients were more likely to die from heart failure as the heart was over worked trying to maintain a failing body.  That would be the easiest way for him – quickly and done; but finding hm just might drive me into dementia. With the rejection, the nurse will be able to tell when he’s near the end, and most likely I won’t be here alone.  Although by then maybe I’ll wish I was!

I’ve sat here and wrote for an hour, without managing to clarify my thoughts at all.  But perhaps I can sleep a few more hours now.

Grapes

Over 50 years ago - maybe closer to 60 - the house my grandmother lived in had a grape arbor just out the back door, off the porch.  I think it was very close to a sealed over well; my vague memory is of it being somewhat "off limits", or at least dangerous.
I have not thought of that grape vine in many years.  It is, of course, long gone - as is the house.
My sister-in-law came to visit yesterday, and brought us a little baggie of Scuppernong grapes.  This afternoon I wanted a snack, so got some of the grapes.  And I stood at the kitchen sink, eating grapes, with tears rolling down my face.  I did not know you could taste a memory!!
Everyone knows, of course, the *correct* way to eat a Scuppernong grape is to bite down just enough to break the skin.  Then you squeeze the sweet juicy miside into your mouth, and throw away the slightly bitter, slightly tough skin.  They taste like childhood.  They taste like bare feet in grass, and sticky juice running down my chin and fingers.  They taste like the sound of buzzing flies.  They taste like lazy yard cats sleeping in the summer sun (but dodging sticky young fingers).  
They tasste like carefree sunny days when feeling loved and cared for was a given, and the biggest worry was avoiding bee stings.
I have a glimpse of why Jimmy keeps wanting to "go home".  So do I.

Random Thoughts on Blogging

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.

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?

Not really.  There have been friends come and go.  I'm sorry to have lost some of the friendships; but I've made new ones.  At one time I had a chat group, and most of us became good friends.  There were problems, and the group disolved; I do regret that.  But I'm still friends (on FB at least) with several of them.

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.

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.

Tell us about the first entry on your blog.

I don't remember that either.  More than likely, I long since deleted it!

Think back to that first blog comment.  How did you feel when it popped up on your computer screen?

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!

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!