The oil leak

I guess DH is more concerned about his upcoming surgery than he let on:

(Since DH recently restarted his Seroquel, and it makes him sleep very soundly, sometimes he doesn't wake up when the "urge" hits.)

DH: Carol, you won't believe the dream I just had!  I dreamed that I went in for my surgery and when they cut open my arm, it was all car parts in there--it was all metal, and there was even a muffler.  The doctor was really surprised.  He was trying to figure out what to do next, when suddenly I sprung an oil leak!  Then when I woke up, I realized I had peed the bed.

Well, now that I typed that, I guess probably it's not as funny as it was when I first heard it.  But I figured I'd share anyhow.

DH: Outpatient Surgery on Monday

Well, it looks like DH will be having outpatient surgery on Monday for nerve problems in his left hand.  This problem has been there for about 6 months--at first when DH complained about his hand being numb, I just chalked it up to more of his heath complaints.  But then his little finger started to contract and now he can barely move his ring finger or his little finger on his left hand, and that is his dominant hand (he is left handed).  The neurologist that he saw has determined that he has carpal tunnel syndrome and cubital tunnel syndrome.  Apparently (surprise surprise) these sorts of issues are rather common with diabetics and can only be remedied with surgery.

So on Monday, 11/19/12, DH will be going in to have surgery.  His left hand/arm may be out of commission for several months.  And, sad to say, it's not the surgery I'm worrying about right now.  It's the Percocet.  Because I am absolutely certain that the surgeon will prescribe it and, even though DH is restricted, I am sure the insurance company will allow it for a surgery.  And the thought of dealing with the Percocet issue AGAIN makes me hugely crabby.

Surprisingly, DH admitted to me that he understands why I get angry about the Percocet.  But he still has zero insight into how it controls him.  I remember (before I started blogging) when I had my gallbladder out, I think it was 2005--when all the mental illness problems were just starting to show up.  I was prescribed Percocet for pain.  After I got back home, I did have pain.  I took two scheduled doses of the Percocet, then I didn't need it any more.  I decided to save the remaining pills in case "someone" needed them in the future.   They disappeared, however, within two weeks.  At that time I truly didn't realize what a hold that drug would have on DH and I also didn't realize that his thinking was already "messed up" at that time.  Hindsight's 20/20, though, isn't it?

Well, I guess on this one I can't say that he's faking the nerve problems, I can see them with my own eyes.  I've seen the neurologist's reports.  I guess I just need to steel myself for the inevitable power struggle that will come right after the surgery.

Struggling with DD's issues

Ok, it's really tough for me to admit this, but I currently intensely dislike DD.  She has been living in the adult foster care group home for mentally ill adults now for about a year and a half, and every time I talk to her, I am so very glad that she no longer lives in our house....

Last weekend was just an example:  She came home for a visit.  The very first thing she told me when she got in the car was "Mom.  My friend committed suicide yesterday."  I felt terrible.  What an awful thing, even for a mentally stable person to have to cope with.  I was hugely sympathetic, told her that suicide is caused by mental illness, offered to help her in any way I could.  She said "her mom (the friend's mom) is going to let me know when the funeral is."  I told her I would help her get to the funeral and even go with her if she wanted me to.  I just felt so awful for her.  Then, as she was rambling on about it, she stated "And they don't even know if she's going to live."  WHAT?????????????

Turns out the friend wasn't dead after all.
The friend DID attempt suicide, but was already out of the hospital.  DD realized though, that she'd get more attention if her friend actually died, so that's what the story became.  At that point, I wanted to bring her right back to the group home, but I didn't, of course.....she then went on to tell me about (same old story) how she is getting "bullied" at work.  (She works in a supported work environment with behavioral supports and such for people with mental health issues). 

The story on the bullying?  The same thing.  She has latched on to the word "bullying" because so many people are talking about it these days.  Usually, at work, she is the one doing the bullying, is what I am told. 

So we went home, and I clearly explained to DD the difference between attempting suicide and committing suicide.  She said she understood.  I warned DH about this conversation.  And DD?  She told her dad the exact same thing!  "My friend committed suicide."  And he very patiently explained again the difference and that no, she did not.

So cut to Friday.  We got a call that she and the boy who had been "bullying" her, had been given feedback about an inappropriate conversation they were having at work.  The staff at work separated the two, and DD "flipped out".  The group home had to come and bring her home, where they were not able to calm her down.  The episode culminated with DD cutting herself superficially in the arm and being brought to the hospital.  When the nurse called me, she (the nurse) told me that DD has been under a lot of stress at work and also stress from her friend killing herself. I wanted to scream.

I am struggling with the lies and the manipulation.  I know it's hallmark to FASD.  But I am having troubles accepting it.  Frankly, in the "real world", I pick up on people like this and avoid them like the plague.  And DD is no different.  I don't want to spend any time with her.  I don't want her to come over, I don't want to call her.  Because it's all going to be a bunch of drama that isn't true.  And I know that I'm her mom and I said that I'd love her forever.  But I wish she would just stay away.  I don't like her.  And I feel hugely guilty about that. 

The Trade-Off

Well, DH had a pdoc appointment and reported to the pdoc that he was getting more paranoid.  He was believing that everyone, friends, family, and just strangers in town, were judging him because he was not working.  He wasn't leaving home for any reason.  At my nephew's 6th birthday party, DH didn't speak to any adult at all, except a few words to me.  The pdoc put DH back on Seroquel.  I actually think that DH should have been on Seroquel all this time, but back when I took over setting up DH's meds, he was not taking it and hasn't been back on it since.

The pdoc said that the Seroquel would decrease the paranoia.  And it did.  And it did very good things for DH.  Instead of watching TV all day, he was suddenly cleaning, rearranging....even doing some small repairs.  It was very good. 

Then DH's pdoc called and stated that DH's Lithium level (in his bloodwork) was way too low.  He instructed DH to raise his Lithium back up to 1500mg a day--600 in the morning and 900 at night.  Immediately I saw a difference with this change, too, but I'm not sure it was a good one.  DH is a little less motivated than he was when he first started the Seroquel, but the main change that I'm noticing is that he is starting to get whiney, like he was several months ago.  He wants this, he wants that, wah wah.  And he's not satisfied with things like he was before.  I had warned him that November was going to be an exceptionally tight month financially, and still, he keeps asking me to buy things like chocolate milk, or expensive (by my budget standards, LOL) cheeses.  When I tell him there is no money for that, he gets sulky and pouty.  And keeps asking.

I'm wondering if maybe the Lithium isn't the miracle drug that it was earlier.  Then I'm wondering if maybe I'm just seeing these things more because he is not laying in bed watching TV all the time, so he has more interaction with me, thus, the opportunity to beg for more stuff.  I don't know!!!  But I would like to go to the next pdoc appointment (in 4 weeks) if I can.

Quitting Meds

Late last week, DH announced to me that he had not been taking his meds and that he was not planning on taking them.

He stated that he was tired of "not doing anything" and he knew that if he stopped taking his meds, he could be "more productive" and "get a job" and then I wouldn't have to work so much.

It was a good idea in theory.  I had already started to see mood swings, but I had chalked them up to changes in sunlight/weather.  DH honestly had no recollection of
any of the things that happened before.  He thought, for whatever reason, that things were fine and then people decided he needed meds.

When I reminded him of a lot of the things that happened before he was medicated, and I reminded him that he WAS in fact, working, when this began, he looked at me like I was making it all up!  He completely didn't believe me, and didn't believe, if the things I said were true, that they were "that bad"!

To make a pretty long story shorter, I told him that it was his decision to make, but that if things start going down that same road again, well, I am not going to go there.  If he chooses to not take his meds, and it causes problems with our marriage, I'm done.  So "That Guy", said to me, "I guess that's a chance I'll take then."

The next day, DH told me that he had decided to continue taking his meds.  I congratulated him on this decision and tried very hard to be supportive.  But things haven't been the same since.  He's been lying in bed sulking.  When I come to bed, he gets up and goes into the living room until I get up.  His sleep schedules are all messed up, and I think a hospital stay is not unbelievable at this point.  The only thing he did yesterday at all was lie in bed and eat.  And we've been here before.  I get fed up and start fantasizing about living on my own.  And I really like the idea. 

<< sigh >>

Back to the drawing board

Well, DH's disability appeal was denied again.  I shouldn't be surprised, but I was just hoping.....anyhow, the attorney is already working on refiling.  Don't hold your breath, for sure!

DH has been having some problems with his left hand.  And, unlike the back problems, I can see that there is truly a problem.  He started complaining that his hand and fingers were numb.  Then, he became unable to grip things in his left hand (which is a problem, because he is left-handed).  He went to the doctor, who thought it was a nerve problem and sent him to a surgeon.  The surgeon determined that DH would have to have nerve surgery on his left hand/arm, and it would be major (not laparoscopic).  So they started setting that up, but on one of the presurgical visits, the doctor noticed that DH's fingers are contracting in an unusual way.  So now DH is scheduled to see a neurologist to see if it really is a nerve problem or something else.

I'm kind of hoping the neurologist does a bunch of brain tests in addition to hand tests.  DH had a battery of tests back in 2007(?) and it was very interesting to see the results (although DH was bummed out)--I'd like to see what, if anything, has changed.

My mom is still with us, kind of.  Once in a while she still knows who "Donna Mae" is, but most of the time she just sleeps.  We don't have a lot of conversations beyond "I love you" any more.  She struggles to understand what I say, and she has a tough time finding the right words when she does want to say something.  I'm giving thought to getting Hospice involved again.  They did so much good for her last year.....

I'm dreading the time change.  It seems like every year, around daylight savings time, my mom takes a turn for the worse.  And frankly, there's not a whole lot worse she can get, I don't think.  From what I see, she appears to be one of the lower functioning residents at her nursing home now.  Part of me wishes it would all be over, but one night, I had a dream that the nursing home called me to report that she had passed in the night, and I cannot even begin to explain the terror I felt before I realized that it wasn't real.  I know lots of people are in the same situation, but somehow it doesn't feel easier.

The main reason I haven't been posting (aside from not having much to post about), is that work has been insanely busy (at the county).  and my job at the group home has gotten busier too, with some new residents who have higher needs.  I'm really really tired of working both jobs.  I'm hoping that something will happen to make this easier somehow, because every weekend now, I fantasize about not having to work.  Except I have to.  I do think, however, that things are better than they were last year.  So maybe things will be exceptionally good soon!

DD update

DD has continued to struggle with her behaviors at the group home she is in.  We did have to have a special meeting as she has been bullying the other residents, and when confronted with this, she became very angry, ran out of the house, and tried to jump into a moving car in the street :-(

So.....what seems to have been decided at this point....DD will remain in the group home she is in for the time being.  If she continues to bully the other residents, she will have to move to a different home (run by the same company) as soon as an opening is available.  They are theorizing at this time that she may need to move every year, as once she gets "too comfortable", she starts feeling like she is in charge and can do no wrong.

I have been trying to wean down her visits from every other weekend to maybe every third weekend or so.  I just get tired of dealing with it--the whining, the arguing, the manipulation.... I have some guilt with this, of course, but I am finding myself having very little patience with her lately, and I think it'd probably be better for all of us if she didn't come home so much.  And I think, too, that there is so much water under the bridge, that it's very hard to go back to the way things ought to be.  I think some time apart might help with that.  But I've never done this before, so maybe I'm wrong.

Status Quo for the most part......

DH continues to function much better since a) I took over the setting up and ordering of his meds and b) since he stopped working.  I have struggled lately with trying to come up with something new to write about--there doesn't seem to be much new in my life!

My mom is still declining in her Alzheimer's.  She now has difficulty processing what she hears.  I think she hears fine, but that her brain can no longer make sense of what people say.  So she spends a lot of time saying "what?" and a lot more of her comments and sentences make no sense.  But most of the time she can still say "I love you", and most of the time she is still happy to know that "Donna Mae" came to see her :-)

My aunt Judy, who, as I wrote around Christmastime, is suffering from lung cancer, despite having quit smoking in 1987, is still "with us".  However, sad to report that the whole-brain radiation that she received in order to shrink the brain tumors, has caused her to fall into dementia.  She is now "living" in a hospice center, and they have stopped all treatment.  She is pretty much where my mom is cognitively now.  But physically still in relatively good shape--it appears the treatments have really done a number on the cancer.....at this point it is unknown whether she will actually die from the cancer, or if the dementia will get her first.  But say a prayer for her family, if you are the praying type....my uncle Neil, her husband, just found out two nights ago that he has multiple myeloma, a cancer of the blood plasma.  I guess the median survival rate is about 5 years, so it's not "as bad" as lung cancer, but jeez, when it rains, it sure pours!

I came very close this week to giving up on trying to get all this stuff paid off, and I called a bankruptcy attorney to ask some questions.  But she had to call me back, and in that time I realized that I just cannot do that.  I just have to concentrate on keeping the spending low and maybe sell some stuff to get the debt down to a manageable level....after I realized that there was no way I was ready to give up and file bankruptcy, I felt a renewed resolve and a huge amount of confidence--so I guess it was a breakthrough moment for me....I'll keep you posted on that...

Anyhow, since there really hasn't been much going on at our house, you'll probably see more posts that don't have much to do with bipolar.  I hope you don't mind!

Update

Well, you'd think that I might have been so busy I just didn't have time to write.....of course that's only partly true :-)  Mostly.....I haven't been sure of what to write.  I'm certainly still feeling much better since I started the hormones.  It's funny, because I'm remembering things I used to like to do, but I had forgotten about.  I'm starting to dream again--I'm really enjoying it!

As far as DH goes......well, remember Jim, DH's friend?  He's been working in Iraq as a helicopter mechanic again/still.  Anyhow, a month or two ago, his position was reclassified as "not in a combat zone", which meant a significant pay decrease for him, so he quit.  He's going to sign on to a company that's stationed in Afghanistan so that he can continue to make the "big bucks" :-).  Anyhow, in between jobs, he came to our house and stayed a couple of weeks (and left, thanks heavens!).....and he got a LOT of work done around the yard that DH didn't "get around to" doing and I didn't have time.  Plus, he spend a lot of money on us--bought groceries, bought cigarettes for DH, bought weed killer for the yard, and a bunch of other stuff.  It was nice to have that bit of relief financially--several things that I had been stressing over got to be a little easier because Jim took some of the pressure off.  And he left in enough time where I didn't get too sick of him being there.  It was a good visit.

I wasn't sure what it'd do to DH, though.  Prior to Jim's visit, DH had been coming to terms with the fact that he was going to have to roll his own cigarettes because there was no way I could afford Marlboros.  And he was drinking a lot more water than pop.  And getting used to the idea that we don't have a lot of luxury foods and the luxury foods we do have/get come from the free food distribution.  When Jim showed up, all of those things ended.  Jim started taking DH out to eat (since I wasn't home often enough to cook and Jim didn't want to "just make a sandwich".....Jim bought DH a carton of Marlboros, bought pop and snack foods.....I started thinking that DH was probably going to revert back to the way he used to be, whining for his Marlboros and pop, since he was "remembering" what it was like to have them....so....

I was pleasantly surprised, because now that Jim is gone, things are just right back to where they were.  iI'm amazed.  And actually, I think that all the work Jim did around our house made DH feel like he had to do something, too, so he's been doing more around the house lately.  Last night he even cleaned the litter boxes without me nagging him.  He's been doing laundry, too.  Really though, when you consider a "normal" person and what they typically do in a day, he's still pretty catatonic, but it's a lot better than it has been.  I'm cautiously optimistic about this.  I also wonder if maybe it's a combination of things--the motivation from Jim, the nice summer temperatures and daylight levels, and the fact that he's not working.  He's been smiling more, laughing more..... he's starting to feel like my husband again and not some whiney baby.  I'll keep you posted.

Off topic completely but....WOW

Now this young woman.....truly inspires and amazes me!

From Scrubbing Floors to Ivy League

http://www.cnn.com/2012/06/07/us/from-janitor-to-harvard/index.html?hpt=hp_c1

Phone call re: DD

Hello, Carol?  This is the group home.  I'm calling about DD.

No, she's ok, there are just a few things I need to talk to you about.  Um, I'm not sure really how to bring this up but..... she has been bullying other clients.  We were wondering how you felt about us moving her to a different house...?

It's not just one other client, she's bullying all three of them.  They're so intimidated by her attitude and behavior that they barely come out of their rooms if she's around.  And we need to think of their safety, too.  She is insisting on receiving attention from staff all the time, and having angry outbursts if staff pays attention to the other clients.  She is cursing at the other clients, calling them "retarded" and bossing them around.

No, we haven't talked to DD or her social worker yet, we just wanted to notify you that this has been happening and we are trying to find a solution.

Yes, we can set up a meeting--next week, maybe?

-----------------------------------

I have to say I'm not surprised really.  I'm surprised that it has taken this long.  But it looks like DD is not real welcome at her group home any more.  I know at her last "team meeting", the nurse for the group home asked me if DD gets this aggressive "seasonally"?  I told her she was "this aggressive" all the time and that is a big part of why she is currently living in the group home.  The nurse gave me a look like she thought I was exaggerating....but I figured she'd find out sooner or later.

So it looks like DD will be moving again.  I wish that her pdoc would try some kind of medication that could maybe tame her outbursts--she hasn't really been on much for that since they took her off all her meds in 2010 :-(  but I guess it's another case of "what do I know?  I'm not a doctor, I'm just the mom....."

Frankly, DD has been very hard to like for a few years now.  We love her and are still having her home for visits and such, but if I didn't have a moral obligation, I would definitely choose to not be around her.  And it sounds like several other people feel the same :-(

I'm old. But it's not as bad as I thought it was.

For the last few months, I've been feeling pretty run-down.  I've been having a much tougher time staying awake all night at my part-time job, to the point where I was trying to decide if I should put in my notice before I end up getting fired for dozing off (I decided I need the income for as long as it's available).....I was getting up at 4am to go to my full-time job, but sleeping an hour on the bus both ways (it's a 1-hour commute to the bus stop).  And I wasn't enjoying anything any more.

I know I've gained a lot of weight.  I've been telling myself "it's because I don't have time to exercise or cook healthy foods...." and I know that does contribute.  But there are people who have a crazy schedule who do much better than I do.  I have HUGE bags under my eyes, even when I've gotten 10-12 hours of sleep.  And there's nothing that's fun any more.  I figured I was middle-aged and just plain tired from doing this for so long.  I figured that not much would probably change until I was once again only working 1 job and not constantly worried about my family.

And then.....my thyroid swelled up to the size of a tennis ball.  I was at work in the Cities, and it was kind of hard to swallow.  I felt like I had a really sore throat, except nothing was sore, it was a very strange feeling.  When I looked in the mirror in the bathroom, I was shocked by this huge lump in my neck.  I've been hypothyroid for about 10 years now, so I suspected it was my thyroid.  But then I thought "well maybe my neck is always like that and I just never noticed...." so I asked a coworker I trust if my neck looked funny.  Her reaction told me "oh yes, it sure did."  She wanted me to go to the E.R. right then and there.  I waited until the next day just to make sure it wasn't going away.

The Dr. told me that "lots of people get enlarged thyroids".  He did an ultrasound, which showed no tumors, so he told me to treat it by....."taking ibuprofen".  Seriously.  "It'll reduce the inflammation."  So I did take ibuprofen (Advil) and my thyroid shrunk.  But what I didn't understand was why did it swell up like that in the first place?  I talked about this with my friend at work.  She told me that she'd been seeing a doctor for her thyroid for several years and it had made a huge difference.  I made an appointment with her doctor.

Suffice it to say, it was a very eye-opening visit.  I learned that I have Hashimoto's Thyroiditis, which is where your immune system goes after your thyroid.  Since I already have Lupus, that makes sense.  What I didn't know, though, was that my body was not providing me with some other hormones, either.  I wasn't producing much, if any, testosterone or progesterone.  Because these levels were so out of whack, and progesterone especially can impact the thyroid, the doctor opted to treat these issues before even beginning to address the thyroid problem. 

He prescribed progesterone pills and a testosterone cream, both bioidentical (hormones that are identical in molecular structure to the hormones created by my body).  I took my first dose(s) that night and went to bed, not expecting much, because I know that things like thyroid pills and lupus treatments usually take weeks to have any recognizable effect.

When I woke up the next day, I could not believe how amazing I felt.  I honestly was "hyper" and wanted to clean the house.  And even though I knew it wasn't true, I felt like I'd lost about 500 pounds :-) (no, I'm not that overweight, LOL, but I suddenly felt really skinny and energetic).  For the first time in a long time, I felt like maybe I should exercise.  I felt like I could see again (I wasn't blind to begin with, obviously, but I guess I was paying attention to things where I wasn't before).....it was unbelievable.

Now, after about a week on these hormones, the "amazing" is starting to feel "normal".  I'm kind of forgetting that I felt bad and didn't even realize it until I felt better.  But then I look in the mirror and the bags under my eyes....well, they're still there, and still big, but they're significantly smaller than before.

And my cravings for bread and pasta?  Almost completely gone.  I've actually, for real, lost 7 pounds without even trying, just because I'm not thinking about eating all the time.  In fact, I've been hungry about 3 times a day.  And my portion sizes are much more normal.  I feel like I could really set my mind to eating less and exercising more and I could maybe even do it.  I'm excited.

I feel like I can suddenly make some positive changes that I thought were impossible.  And I'm hopeful sometimes now.   It makes me wonder what other things I could improve if I was better able to recognize that maybe I could feel better.  I'm still not sure about my thyroid.  But I'm getting impatient to learn.

From the mouths of babes.....LOL-I think!!!!

As you probably remember, I work in a group home for mentally ill people on Friday and Saturday overnights.  We recently got a new client, age 24, who has a very similar history and diagnoses as my dd.  So it's possible that I have above-average experience/skills in talking with a person with these issues (or maybe I'm just lucky!)....anyhow, this client and I were talking about some problems she's had in the past, and her family history.  And even though a lot of her thoughts were showing a lack of common sense, I just tried to empathize and say things like "Wow, it sounds like that really stresses you out!" Or "I can sure see how that might upset a person....." and "I can hear how frustrated you are, that must be very hard."

So she was really opening up to me.  And it was very nice to be there for her.

And then she said, "You remind me of a lady who worked at a group home that I used to live at.  She was a really nice old lady, just like you!"

I was taken aback for a second, because, after all, my Mom's the "old lady", right?  Then I just thanked her for the compliment.  And I'm still laughing inside.  And cringing a little maybe too.

Restricted

DH got a certified letter in the mail yesterday.  It was from our health insurance provider, and stated that since he had had at least 10 visits to the emergency room at two or more hospitals, and had 15 prescriptions filled for narcotics (Percocet), they are placing him on restriction.  Basically, what this means is that he is ONLY allowed to go to one specific doctor and/or his psychiatrist.  Nobody else.  And any time he requires Emergency Room services outside of our own county hospital, there will be a team determination as to whether those services were a true emergency.  If DH uses a different Dr., other than his "one and only", or a different psychiatrist, or uses an Emergency Room when it is determined that it was probably not a life-and-death emergency, the bills will not be paid by our health insurance.

I had heard of this happening, but this Percocet thing had been going on so long, I figured nobody cared.  Apparently they do. 

DH was embarrassed.  According to him, he has not been in the E.R. or received Percocet since his Pdoc warned him in early February that being addicted to Percocet could affect his disability case.  I don't know if that's true or not.  I do know that there seem to be a lot less complaints about back pain and definitely a lot less trips to the E.R. 

In DH's defense, I believe that the "more than one hospital" was probably because DH's job was in a different county than ours, and not necessarily because he was "drug seeking" (going to a different hospital because he had already gotten Percocet from our hospital).  And he was always getting sent from work to the E.R. for high blood pressure, high blood sugar, back pain, whatever.  His work did not take chances.  If they thought something could possibly be wrong, they sent him to the E.R.  And I understand that.  I also understand that he believes that he functions better and has more initiative when he takes Percocet.  Actually, it seems that way to me, too.  But to me, really, that just says that maybe there's something else out there that could make things better (and it isn't a narcotic!). 

I'm relieved.  When I know there is Percocet in the house, I get very anxious.  I end up being the Percocet police, keeping the Percocet under lock and key, and doling it out one at a time according to the instructions on the bottle.  If I just left the bottle for DH to use "as needed", he would (and actually has) take much more than the prescribed dose--once he took an entire bottle of 60 pills in 2 days--I don't know how he survived. And even though the "you might not get your disability if you keep this up" is a big incentive not to do that any more, I know addiction can be more powerful than that.  So it's nice to have a backup.   

Sad tonite

I was getting ready to head to work when my brother called me, to relay the information that my Aunt Judy, who was diagnosed with Lung Cancer last winter, is in the hospital.  She had recently undergone her second Gamma Knife radiation treatment for tumors in her brain.  At this point, they don't seem to be sure as to what is really happening or why, but....she has numerous dementia symptoms suddenly.  She doesn't recognize my uncle or their children, she is very confused.  She can't move her right arm at all, and seems to be blind, too.

The saddest thing is that all the tests that the hospital have done so far show good things physically:  No tumors are currently detectable in her brain at all.  The tumors in her body continue to shrink and no new ones have appeared (She has been taking Tamoxifen, which has been shown to extend the life of lung cancer patients).  Her heart is good, her bloodwork looks good too.  Just her brain isn't ok.

From what I can find on the internet, dementia is a very rare side effect of the Gamma Knife procedure.  Based on what I know about my mom, I'm also wondering if the dementia was already starting, and was just "helped along" by the procedure....but if that was the case, why did there not appear to be any dementia following the first procedure she had in January?  Regardless, things do not look good.

My uncle is thinking that if she does not regain any of her abilities, she may have to be moved to a nursing home or a hospice house.  And his heart is breaking.  And, since this aunt and uncle are probably my most favorite relatives in the universe, except for my mom....well, I'm really sad, too.

I am hoping that it's a temporary setback.  But I knew from the "get-go" that the prognosis for Stage 4 lung cancer was not good.  I guess, since my dad died of lung cancer, I kind of had an idea how things would go....of course, that's like saying that since my mom has Alzheimer's, I know how other Alzheimer's patients will present.....but you know, you try to cling to what's familiar to you, and my dad is/was my sole experience with lung cancer.  And he had brain tumors too, but of course in the 1980's, they didn't have the Gamma Knife radiation, or any of the fancy scans that they have these days.  So it's really like comparing apples to oranges, but I keep doing it.....

Anyhow, if you are a praying type of person, and feel like saying a little prayer for my Aunt Judy and my Uncle Neil, I would greatly appreciate it, and probably they would, too.

Sex and the Bipolar Hubby--adult topic, sorry!

I need to talk to someone about this, and, this blog seems to be where I do the talking......so.....DH.  He's not working, as we all know....basically, he sits in a chair all day and watches movies.  He doesn't clean the house, doesn't fix anything that needs fixing (and he does know how to fix stuff), doesn't do much at all.  If he's not sleeping, he'll let the dogs out.  And unless I nag him, that's all he does.  If I do nag him, he might bring the garbage down to the end of the driveway.  Or maybe transfer clothes from the washer into the dryer.  But he NEVER folds the clothes or puts them away.    It's the same ol', same ol'.

With that said, I know it's been going on a long time.  I'm not in denial any more, for sure.  The way things are is pretty much how things are going to be from here on out.  I'm sure of it.  If I want things to change, well, I can't hope things will get better "someday".  They aren't going to.  I am going to have to make the changes or quit griping about the things I don't like.  With that said, I'm kind of tied to the chair as far as changes go for right now.  There is no wiggle room in the budget to allow me to save a little for a "new life for Carol" fund.  Our house is way underwater, even if you somehow managed to overlook all the broken stuff.  And even if I decided that foreclosure was the way to go, well, the animals are my family, too, and who on earth would rent to a "family" like this?  I do have "someday" hope, though.  Two of the dogs are elderly.  Several of the cats are elderly.  This won't be the situation forever.  Someday I'll be able to move, with or without DH.  I hope things get better, I really do.  But my tentative plan is to make changes that make things easier for me, and then if I can fit DH into those changes, well, I'm ok with that, as I did marry him "in sickness and in health".  But I'm extremely tired of living like this.  Probably that's a whole 'nother post.

Which brings me to this:  DH and I no longer see eye-to-eye as far as um....marital privileges are concerned.  As far as I'm concerned, there are a lot of reasons why I'm absolutely not interested any more.  Starting with "he's not attractive", but that really is the least of it.  I can see with my heart and not my eyes, so his physical beauty or lack thereof would not even be an issue if there weren't these other issues. He's not a "partner" to me, he's a piece of the furniture on a good day.  We aren't a team any more, I'm doing it all and just supporting him.  I work 60 hours a week, and if you add in commute time, it's well over 80.  My mom has Alzheimer's and he doesn't go to see her, even with me.  Basically, the way I see it, in the "give and take" of marriage, he's just taking.  And I'm just giving.  Very unbalanced.  Yet, he just doesn't seem to get it.

Some nights it just feels like "one more chore".   Other nights, it seems like "I went to work today, I got groceries, I visited my mom, I set up appointments.....I made sure there was something for supper....and you sat in a chair.  And you want me to do more.  To make you feel good.  Not a chance."  And then there's the whole partner thing.  I don't feel like he's my partner.  He doesn't go out of his way to make me happy.  But he expects me to do that.  And for the most part, I do.  And it makes me angry just typing this.  Because it really shouldn't come down to "what's in it for me?".  But it feels like there's already so little in it for me that asking me to give more is just futile.  And he gets all hurt when I am not interested.  I've tried to explain it before.  I just don't really know how to do it well without saying hurtful things.  So I just keep refusing.  I don't even want him to see me in any state of undress any more, because I'm afraid he'll think it's an invitation (he has before).  But this hurts his feelings too.  But unlike other issues we've had in the past, I stand my ground, probably because I just can't bring myself to be ok with it any more.

I admit to feeling rather discouraged lately.  I'm not sure why, really--nothing has gotten worse (but nothing is better either).  There's no end to this in sight unless I create one.   I'm tired.  I've been doing this for over 5 years now, and things are not much different than when I started, except that I've taken steps to control things that I can control.  I'm not getting younger.  I don't have a life except for my animals, and I don't even have time to enjoy them like I should.    I'm trying to be supportive, but nobody's supporting me.  That sounds kind of selfish to me, when I think about the fact that if he had Alzheimer's, I wouldn't expect him to do anything more than what he's doing now (or not doing), so maybe my problem (once again) isn't DH, it's the mental illness....?  And the fact that I don't really know how much is laziness and how much is mental illness.....well....thanks for listening....

This is what I want when I get old

A Dutch village dubbed "The Truman Show" for dementia patients is getting praise from Alzheimer's experts in the U.S.
The tree-lined streets of Hogewey, a tiny village at the edge of Amsterdam, boast shops, restaurants, a movie theater and a hairdresser. Its 23 apartments are carefully crafted to feel like home to 152 residents.
But Hogewey is not a real village; it's a nursing home.
"Our director compared it to a theater," said Isabel van Zuthem, Hogewey's information officer. "The frontstage is what all the residents experience as a normal way of living, their normal home. But backstage, we are a nursing home. Everything is arranged to give all residents all the care they need. But they feel like they're living a normal life, and that's what we think is very important."

To read the rest of this story, click below:
http://abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-dutch-village-dubbed-truman-show-dementia/story?id=16103780

Happy Easter

Well, here we are, Easter again.  I'm going to head over to the nursing home at noon to have Easter dinner with my mom.  I'm not bringing DH this time because when I do, he just makes a point of making sure I know he's miserable there--that really really bugs me, because my mom really likes him and he never wants to go see her--but I guess really, it's just one more thing that I wish he would do that he doesn't.

Things here have been pretty uneventful lately--DH is still on the lower dose of Lithium, "That Guy" sometimes seems to be waiting in the wings (DH sometimes gets irritated easier than he used to) but hasn't made a full appearance yet.....DH is still not working.  His nights and days are all messed up.  He "goes to bed" at the same time as me, about 9pm, then by 1am, he is up again.  Then he goes back to bed a few hours later and does it again.  I'm actually a little concerned (but not a whole bunch).  I bought him a frozen pizza because I was so proud of the changes he's made as far as spending--I thought he deserved a treat.  That was almost a week ago now, and he still hasn't eaten it--that's weird.  Very weird.

DH has gone to get the free food a couple of times now, and it helps a lot!  Our grocery bill has gone way down.  Aside from that, he barely leaves home.  Actually, he barely leaves his chair in the living room :-(  but he's not constantly asking me to buy him stuff, not complaining that the generic stuff we have isn't any good, etc....he's been very accepting and that's strange too.  But a very good kind of strange, because it does take some stress off of me. 

My mom still calls me "Donna Mae".  I asked her one night, "Do you remember how you and I met?" (I was trying to figure out who Donna Mae was to her) but she couldn't remember.  So I just said "It seems like we've known each other forever!" And she agreed.

Well, aside from that, things have been pretty boring.  I go to work every day, come home, see my mom, take care of the animals, and go to bed.  There hasn't been much drama.  I'm ok with that.  But it doesn't make for a very interesting blog, does it?

Side Effects

Well, things were going comparatively well.  For a time.  DH was remembering to go to his appointments, taking his pills, cleaning the house--in fact, the house was cleaner than it's probably been in a year.    I was thinking that it might have been an ok tradeoff, if DH not working was the cause of all the new positives.  But no matter what, apparently, the phrase to remember is....."Be careful what you wish for."

I'm not complaining about the "new and improved" DH.  And I'm not saying that he's so improved that I can't stand it (we were actually at that point for a brief period, while he was manic and undiagnosed, but we aren't there now).  What I'm talking about is the fact that our budget has been cut to the bone.  I thought it was tight before, now it's unbelievable.  And DH still says he wants to find a job.  Who am I to object?  Any amount of income he could possibly bring in would help us big time, right?

So, DH has been meeting with the people from the organization that finds jobs for people with mental illness.  I'm very impressed with the fact that he hasn't missed an appointment with them.  Unfortunately, between DH's memory problems, there aren't a lot of things that they can be sure that he could handle.  But that's not the worst of it.....the lead job counselor there called DH's pdoc and told him that "DH is NEVER going to find any job anywhere, as long as his hands shake like they do.  Any employer sees that, and that'll be it." 

So now, DH's pdoc, who does not think that DH should work anyhow, but of course doesn't want to stand in his way if he needs to work or wants to work.....has been cutting back on DH's Lithium, as it is believed that the tremors are a side effect of that drug.  I've been surprised that DH is not having the mood swings yet and he hasn't had a lot of racing thoughts either.  I think DH is surprised too.  He's down to half the amount of Lithium he was on when this experiment began.

However, with every decrease in the Lithium, and I don't even know for sure that it's more than a coincidence, DH has been slipping into more lethargy again.  He sits in his chair and does nothing all day.  Nothing.  Some days he only even eats one meal--and for a guy his size, that's not a normal thing.  He just sits there.  When I ask him questions, he responds appropriately, but then an hour or two later he can't remember what we talked about at all.  It's like having an extra piece of furniture around.  And it seems to coincide with the decrease in Lithium.

DH's pdoc has also started DH on Inderol, which is a blood pressure medication that is supposed to help with the tremors.  So far, the tremors seem to have decreased, but are still very noticeable.  I'm starting to be concerned that the tremors might be a permanent thing.  That's kind of scary.  I know I'd much rather take the hand tremors any day, as opposed to how crazy things were before DH started on the Lithium.....but still....DH can't carry a bowl of soup from the microwave to the table without spilling it.  When he eats with silverware, the tremors often cause his food to fall off the fork or spoon.  And writing is nearly impossible.  I need to find out more information on what to expect.  I'm concerned.  Probably I should've been concerned a long time ago, as the tremors have been going on for a long time, but nobody else was concerned (meaning the pdoc), and I was just so happy that the Lithium was helping so much......

And now that his Lithium has been lowered so much, I'm worried about the lethargy, but also worried that "That Guy" might come back when I least expect him.  And that would really suck.

Donna Mae

I haven't written much about my mom lately, and I guess that's a good thing.  For the most part, she is stable.  In fact, the hospice people are questioning whether they can keep her in the hospice program, because physically, well, she's not really deteriorating much.  She hasn't lost weight, is eating small amounts again, and is accepting her medications again.  I hope that she can stay in the hospice program (although that's kind of bittersweet) because I think that all the attention and pampering from them is helping her.  But I should be happy that things are stable and not WANT her to be in hospice....sometimes this stuff is really confusing.

I still stop by every night after work to see her.  I know that she has a hard time recognizing people, so I usually say "Hi Mom, it's Carol."  and she usually says "Oh, hi Carol."  But I never really knew, for the longest time, if she knew who "Carol" is, in relation to her.

One night we were chatting, though, and she told me she was a hundred and fifty years old.  I decided to take the plunge and I asked her "Do you have any children?" and she said yes.  I then asked her "Do you have boys or girls?" and she said "I have one son."  And I said "No daughters?" And she said "No, I always kind of wanted a daughter, but I never got one." (That was sad for me.)

So then I got really curious as to who she thought I was.  "You're Donna Mae, right?"  me: "no, I think that must be someone else, my name is Carol."  mom: "NO IT ISN'T.  YOU'RE DONNA MAE."  me: "You know, I think you might be right!"

Now I have no idea who Donna Mae is or was.  My mom has never mentioned anyone by that name.  But it appears that I am Donna Mae now.  If I ask my mom if she remembers who I am, she always perks up and says "Donna Mae!"  (and of course I tell her she's right).  It does get more confusing with the staff of the nursing home, because they know me as "Carol, Esther's daughter."  So they ask my mom if "Carol" is coming tonite, and she responds as if I have never existed.  They ask her if her daughter is coming, she says "I don't have a daughter."  (yikes)

One night, I stopped by and a worker was reading some stories to the residents.  There wasn't enough room for me to sit next to my mom without disrupting everyone, so I sat on the other side of the room and listened.  When the worker finished reading, she pointed to me and said "Esther, you've got a visitor, do you know who that is?" and of course, my mom said, really loud "Yes, that's Donna Mae."  And the worker started to correct her, but I shushed her and explained in private what was happening.

Occasionally she asks me (Donna Mae) how my mother is doing.  I believe that she sees Donna Mae as a dear friend.  I always tell her "oh, she's looking forward to Spring." or "Oh, she said to tell you hi."  My mom always likes it when Donna Mae's mother passes a message on to her through me.  But it's sad, just the same.

The best thing(s) about being Donna Mae, however, are that she "knows" me again and likes/loves me.  She tells me "You're such a good friend, I feel like we've known each other forever!"  And when I tell her I love her, she says "I love you" back to me (for a time she would not tell me she loved me, because, as she explained, she could not say that to someone she did not know), so it's kind of a trade off.

I get to be Donna Mae, who she loves.  But Carol appears to be gone forever.

Insurmountable

This past week we got, for the first time this winter, over a foot of new snow.  I called in to work on Wednesday--there was no way I was going to be able to drive 50 miles in that, then hope that the bus I catch is on time, too, or if it was even going to make it to the bus stop at all.  All morning, DH would get up, have a "snack" and "take a nap".  Finally, I asked him if he was going to plow our driveway so that I could get to work the next day.

He tried to procrastinate, after all, it was only 1pm.  I told him I needed it done ASAP.  I didn't really, but I suspected by this time that he wasn't exactly motivated to do it, so it could take a while.

I watched from the window as he went into his shed to air up one of the tires on the 4-wheeler.  About a half hour later, he came out and from what I could see, was just sitting on the back of the 4-wheeler.  Not moving at all.

After another half hour, he came inside and said the battery was dead.  I suggested he bring the battery in the house to warm up--no, the battery is too hard to get out.  I asked about his battery charger--no, the clamps are too big to charge that battery.  He had this "the world is ending and there's absolutely no getting out of it" air.  I told him that I was going to call someone to come and plow us out (and at the same time thinking "how much money could I get if I sold that 4-wheeler?).  When I really started looking in the phone book, he went back outside with that "I am the saddest, most abused person in the universe because my wife expects me to plow this driveway and it's just not possible" attitude.  He came in five minutes later and reported that he got it started.  He went back out to plow.

I watched from the window.  Once again, for about a half hour, I observed no movement, just DH sitting there on the 4-wheeler.  He was just sitting there.  Then he came in and, with that same "the world is ending" air, he told me that the 4-wheeler was stuck.  (and from his tone of voice, it was stuck with Super Glue and would never ever be unstuck again.)

Again I went through some possible solutions.  Did you rock it? (yes) (I didn't see any of that though).  Do you have any friends who could pull it out with their trucks? (no) (I had canceled the insurance on DH's truck to save money, and right now it has no brakes) Can I help push? (no, stuck too bad).  Can we put something under the wheels? (I don't have anything.)  I was pretty frustrated by this time.  I told him we needed to find a solution fast, because I could not call in to work two days in a row for a snow storm that had already been plowed away everywhere but our driveway.  I asked him "If you were living in your hometown, way up North, and this happened, what would you do?"  And right away he said "I'd get a shovel and dig it out and put the chains on."

What I want to know is why this solution was only possible to him if he pictured himself in a different place and time?  Mental illness is strange, for sure.  The driveway got plowed.

When he came back in, I was setting up his meds for the week.  I thanked him for doing the plowing.  He asked me if I'd seen "That Guy" around lately, as his PDOC had made some adjustments to his meds.  I said no, actually, what I had seen, for the most part was very good compared to when DH was working.  But then I added, "I do notice that it seems like when you're confronted with a problem, it's um....very difficult for you to see solutions, it's.......and DH piped in: "It's like a minor problem becomes insurmountable."

Yes, that's it.  And DH, although he couldn't apparently do much about it, had the insight to recognize that.

Ok, this is going to be tough. But I'm hoping I'm up to it.

We found out that DH is not eligible for unemployment due to his pending disability appeal.  "You can't tell the unemployment people you're ready, willing and able to work, and at the same time, tell the disability people that you're not capable of working."  Anyhow, it might be legal to get unemployment, but it could potentially make a mess out of whatever is left of the appeal.  It's too big of a risk, of course.  If DH could get disability, I wouldn't have to work 2 jobs any more.  And right now, the ONLY way I wouldn't have to work 2 jobs.  My full time job pays for the mortgage ($900/mo), our health insurance ($420/mo) and my gas to get there ($400-$500/mo).  That's it.  No food, no clothes, no cat/dog food, car insurance, electricity, phone or heat.  So....as long as I like having those things, the second job is not an option right now.  In fact, we're back to ends not meeting again.

I dropped the insurance on DH's pickup truck.  I'm dropping the internet service at the end of the month.  DH is rolling his own cigarettes (still) and eating cheap food at home.  He's not complaining at all, and that makes things so much easier.  I'm toying with dropping some phone service, but it's hard to decide what to do.  We each have cell phones.  Mine is important to me because I'm on the road so much.  His is important to me because he's been suicicidal in the past and I feel like I need to have a way to get in touch with him if/when things are bad.  But the land line.....I need that in case I'm in the house and my cell phone doesn't get a good signal that day...what if my mom had an emergency and they couldn't get a hold of me?  Still struggling with all of this.  We already don't have TV of any kind, so cutting out cable/satellite isn't an option.  Oh, and DH has agreed to go to the free food distribution again (we did this when Jim was living with us and it helped a lot, but DH hated it because he was always so afraid that someone would recognize him.)

I'll hopefully be getting a raise (about $40 every 2 weeks) from my full time job in about 4 months.  I'm hoping we can hang on til then.  I guess, if gas gets too high, like they're talking about, I can stay at my friend's house in the City.  But as I've said before, I don't always trust DH to be able to care for all the animals correctly.  It's an option, though.....better (maybe, anyhow) than losing the house.

Selling the house is not an option.  The house is valued at 1/3 of the mortgage right now, and even that may be high, what with the roof issues etc.  And compared to rents, it's really not that high.  I can't move into an urban area with these animals, and I won't abandon them or "find good homes for them."  They are my family members too, and I need to keep that in mind when I make plans.

The last resort, of course, might be bankruptcy.  I hope it doesn't come to that.  I'm going to look into the new programs for refinancing under water mortgages, and if I can do that, it might all be possible. We'll just have to cross our fingers.  I've done it before, but in hindsight, I have no idea how--I guess I'll have to operate on the same blind faith that got me through this the last time.

This may shock you.

Well, DH had almost a week of being the exact person I married.  Helpful, considerate, frugal, honest....and then, well, I'm not quite sure what happened.  I'm inclined to believe his story since the ending is rather amazing, but I honestly don't know what to believe any more when it comes to stuff like this.

The thing that foiled it?  Probably my car.  I had to get my brakes fixed in my car as they were grinding badly and I had managed to save up the money to get them fixed  (since DH got a paycheck 2 weeks ago, this is really the first pay period where he hasn't gotten paid, so we aren't hurting much worse than usual yet).  DH volunteered that I could take his car to work.  So I did.  While I was at work, DH called me to say "hi", which he used to do all the time, but since he's been sick, he hasn't bothered.  He told me he had pain in his hip.  I told him to take Advil.  He didn't.  Then, right around the time I was leaving, DH called and said that he had gone in to the E.R. for his hip pain and they had prescribed him Percocet and could I please pick it up on the way home?  To me it came across as very sneaky.  I determined that he had attempted to do this without my knowledge and, in fact, would have, except for the fact that I had his car and his "Benny" card (flexible spending card that can only be used to pay for prescriptions) was in the car.  Since he has no job, and I had the Benny card, he had no way to pay for the Percocet so he had to 'fess up.  Of course he said that was not the case, but it was pretty obvious to me.

So we went through another few days of me being the Percocet police.  I kept the Percocet in my safe, he asked me for them when he "needed" them.  This is because of the times before this when he took nearly the whole bottle at once to get a better "effect".  If you have only started reading recently, please do a search on "Percocet" and learn about this never-ending battle.

He didn't seem to notice, but his "pain" moved around.  First it was his left hip, then it was his right hip, then (of course) it was his back......and he needed Percocet for all of those.  When I asked him what he'd done to help alleviate the pain prior to taking Percocet (heating pad, Ibuprofen, muscle relaxer pills), the answer was always "nothing".  I was pretty disgusted and I told him so.  I told him that things were going to go back to being just like they've been.  And that I was running out of patience.  He continued to ask for his Percocet, I went to bed.  Same thing happened the next night after work, as soon as he saw me he needed more.  I got very angry, told him "I don't care any more, do what you want." And went to bed feeling like a huge burden was off of my shoulders.  (Really, though, it's a whole 'nother post, but I've kind of been turning more towards "I'm going to live my life and if you want to tag along, well, fine, but I don't care if you don't like it."

The next day I had taken the day off for a meeting at the nursing home.  DH approached me and said that he had been thinking about things.  I figured he'd come up with some new excuse.  What he did say was: "You are right.  I do have a Percocet problem.  I can go all day long without one, but as soon as I know you're home, I come up with all sorts of pains.  I will tell you anything to get some.  If I know it's in the house, I'm going to want it and I'm not going to stop until it's gone.  I want you to get rid of the rest of the pills."  I asked him if he was sure.  "Yes, if I know they are there, I won't leave you alone until I've found a "reason" to take them all." I asked him if he wanted to watch me dispose of them so he knew for sure that they would no longer be in the house.  At first he said "no", but then he changed his mind.  I know you're not supposed to flush them any more, but I did because it was the only way I could think of to get rid of them completely without waiting around to bring them somewhere or whatever.  I told him I was proud of him.  He told me that he was tired of lying to me and that he has a lot to lose if he keeps on doing it.  He said he is going to work hard to be honest and accept our situation and not insist on stuff that we can't afford.  I was very proud of him.  He has never done this before.  And I so much want to buy into it.  But.....

That's not to say I really believe that most of it will happen.  But I do know I have seen some good things in the past two weeks and it's possible that things could improve.  Unfortunately, I know that despite his good intentions, history shows that things won't likely be that way.  And he'll probably get some more Percocet.  But I hope I'm wrong. 

Something good is going on

I'm not sure what it is--is it me taking control of DH's meds and making sure that everything is there every day.....or him not having to go to work.....or the fact that he's sleeping at night and awake during the day....or a combination of all these.....?

But here is what I am seeing:
DH is drinking cheap bottled water and not complaining about no pop
DH cleaned my pantry.
DH cleaned the living room.
DH made himself sandwiches without whining about how there was nothing to eat--not only that, but he used very old bread, saying "we've got to use this up, we can't waste it just because it's all dried out...it's not moldy yet" (very very unusual for him).
DH called the "jobs for the mentally ill" worker twice (she hasn't returned his call yet)
DH applied for unemployment.
DH is rolling his own cigarettes and not complaining at all about how bad they taste.
DH has been feeding/pottying dogs before I get home at night so I don't have to.

I could go on and on.

But you get the idea.  He's smiling more, too.  For a long time I hadn't noticed the lack of smiling, until he was laughing one day. 

I know it's probably just high spot on the roller coaster of bipolar.  But the way he's been these last few days makes me remember why I married him to begin with.  And right now, he's doing great.  And I'm amazed and thrilled.

Why on earth did it take me this long to do this????

I'm sure it has a lot to do with my denial of DH's mental illness.  Part of me is still hoping that he'll wake up one day and be "normal" again, just like he (pretty much) woke up one day and wasn't any more.  Intellectually, I know it's not realistic, but......I do the same thing with my mom, but that's another post.

When my mom lived in assisted living, for nearly two years I would go to her apartment on Sunday and set up her medications for her.  She had a purple pill container for her morning pills, and a blue container for her nighttime pills.  If a doctor prescribed a pill for noontime, we always had to request that it either be in the morning or at night, because my mom could only seem to remember those two pill times.  But it worked long past the time when she could no longer read anything, because she could differentiate between the colors of the pill containers.  Every Sunday I would religiously refill her pills for her.  It helped with keeping the prescriptions filled, too, as I was right on top of things.  I remember asking DH if he wanted me to do that for him, too (at the time he wasn't on as many medications as he is now), and he got offended and said "no, I'm an adult, I can do it myself."  And that was that.

I know he hasn't been taking his pills religiously.  And recently, since he's home more, I've asked him why he hasn't taken them at certain times.  Often his response is "I forgot to fill up my pill container."  or "I forgot to call in my refills."  And you're saying to yourself right about now, "Ok, Carol, this is obvious."

But it took me this long to do it.  I just didn't ask him.  I took over.  And once I did it, he didn't mind at all.  I had expected some kind of objection, but he didn't say anything about it.  And it feels good, because it's one less excuse he has to not take his pills.  I think he hasn't taken his full regimen for weeks.  I have an idea to track everything on paper, too, as sometimes his pdoc will make a change that isn't reflected on the prescription bottle and I don't always know/remember those.  Like "Your Depakote levels are a little high, let's drop down to three pills instead of four...." and if I can't remember what the right dose is, it's almost guaranteed that DH isn't going to remember either.  So my intention is to request that the pdoc's nurse write down what they have listed as what he should be taking, and that she write down any changes made at DH's appointments and send a written "change notice" home with DH, so we are on track.

So far, the results have been promising.  DH has been in a pretty good mood yesterday and today. (I started doing his meds last weekend).  At that time I observed that he had no Effexor (antidepressant) and could not remember if or when he had requested it to be refilled.  He hadn't taken it for at least 2 weeks.  Now, a week later, he is more cooperative, more friendly, less demanding, more appreciative.  It makes things so much more pleasant and comfortable for me.  I hope the improvement isn't just a fluke.

I wonder what other changes I could make that could improve things.  I'm amazed and embarrassed that it took me so long to do this one.  But better late than never, right?

What I think about DH working

Well, it's been a little over a week since DH was fired.  Financially it hasn't really hit us since we had that last paycheck from him, and he had managed to show up for work every day that he was scheduled up to the day he was fired, and that was 5 days.  So actually, his last paycheck was bigger than his checks had been previously.....

But mental-health wise, after a day or two, it started to sink in.  DH got really depressed, as so many of his coworkers were people he counted as friends, and so in a sense, it was a kind of "double whammy" for him.  He stayed in bed for 3 or 4 days straight, only getting up to eat or smoke.  Then I came home from work one night, stopped at the nursing home to check on my mom, and DH was STILL in bed.  I had tried to be as understanding as I could--I knew that despite the fact that everyone around him could see it coming (the firing), he really didn't.  And losing a job in any way is disheartening and stressful.  But then, as he was laying in bed, he made some kind of comment about wanting to be a billionaire, and I got snarky.  I still feel bad about my comment, because his feelings were hurt, but I said "Do you think Bill Gates, at any time in his life, laid in bed for four days straight?"  I don't think it probably was my comment that motivated him, but shortly after that, he got out of bed.  He put in an application at McDonalds and has already had an interview.  Unfortunately, they told him they "aren't actually hiring, they're just compiling a list..."  But the fact that he went out and did that impressed me.

I also told him to file for unemployment.  I know two people who were fired from my part-time job who were able to get unemployment.  DH says "if I even get it, it won't be much", but I say it'd make things a lot easier to get $20/week than nothing, for sure.  So my task for the upcoming week is to get him to file for that.  I know that you're not supposed to be eligible if you get fired, but it seems like some places don't fight it, so he might as well see if that's the case. 

I think I'm starting to see that working really took everything he had.  He's done more around the house in the past 2 days than he did in the past 2 months.  I so much wish that his disability would go through.  Unfortunately, it looks like he'll probably end up re-applying because his case is at the top of the appeals levels now, and from what I understand, only 2% of cases are approved at that level.  Not hopeful.  But I'm seeing how much better things could be if he didn't feel like he had to work.  And if I didn't feel like I had to ask him to work.

Who knows?  Realistically, it could be 3 more years before he finds a job again.  I very much hope not.  But it's happened before.  I'm trying to focus on the fact that except for the 4 (3?) days he spent in bed, he hasn't been down much, and I was sure that when he did get fired, he'd be positively suicidal.  So there are good things.  I'm relieved and anxious about the future.

DH got fired

Well, I know most of you aren't surprised to hear this.  But actually, in the last two weeks, DH had been really trying hard to get into work.  He was very proud of himself.  (He still wasn't doing anything at home at all unless I really really nagged, but at least there was some money coming in)....

Anyhow, tonite he was in a really good mood.  He went to work and was already back home by the time I got home from work.  He said he was scheduled to come in at 3pm, even though for months he has worked at 6pm on Thursday nights.  I'm not sure whose fault it really is, DH's memory and attention to detail is so terrible that he might have looked right at the schedule and not noticed that the time was different.  I'd like to think, also, that management would have pointed out to him that they had made a change, but, according to DH, they didn't.  Well, it's been coming for a long time....and he's had many "second chances".  So here we go.

In a way I have that strange, relieved feeling that I had when I got laid off.  I knew it was coming for so long, it was a relief to have it over and done with and know where things stand.  I'm scared about finances.  But I think if I'm very careful, and maybe sleep at my friend's house once a week, I can make it work.  I don't really have much of a choice!  Well, as I said a few weeks ago, I've been here before and I learned a lot from that.  My biggest fear is DH's "needs".  His cigarettes, his pop, and even though he once again isn't caring about his diabetes, I don't feel right feeding him food that is blatantly unhealthy, especially for a diabetic.  I imagine that's what it'll probably come down to, though....he's not checking his blood sugar or anything like that lately anyhow, and "healthy" foods are so much more expensive....I'll do what I can, but I don't think it'll be the best nutrition....

DH, I think, is still in shock.  He is really handling it remarkably well, considering how he normally reacts to negative stress....but like he said, he thinks he's in shock and that it feels like a bad dream.  I imagine tomorrow or the next day, when it really sinks in, I'll need to keep close tabs on his mental health.

In the meantime, I guess I'll just play it by ear and know that somehow "the money always comes from somewhere".....

Merry Christmas and Happy New Year

Well, Christmas was strange, but not as sad as I thought it would be.  DH's mom's injuries were not as dire as we first thought.  I am learning that DH, even when he gets the information directly, is not necessarily an accurate source.  He talked to his brother and told me that his mom had broken her pelvis and her arm.  Then he talked to his mom himself and told me that no, she had broken her hip, her pelvis, and her arm.  I called her on Christmas, as I am having a tough time getting DH to call his family members (not sure whats up with that, is he afraid of what he might hear, maybe?) and she told me this:  She broke "a couple of bones" in her pelvis, but there isn't anything the doctors can do to fix them.  She has a crack in her hip, but it's not actually broken, and her arm is fine.  But her shoulder is messed up and she did have to have surgery on that.  So she is out of the hospital, but in a lot of pain and can't walk.  Mostly, though, she can't walk because she needs to take some pressure off of her hip by using a walker, but her shoulder makes it difficult.  She tried to describe this "half walker" thing that she is learning to use.  She sounded good.  I was hugely relieved.

As far as DH's dad goes, he's still in the hospital.  He had a massive stroke affecting his left side.  We are waiting to see where he goes next, probably a rehab center in his hometown.

And my aunt.  We went to their house for Christmas.  She has lost her hair and has a cough, but aside from that, and the fact that she didn't get up from her chair while we were there, she seemed in remarkably good spirits and she ate well.  She seemed a little more "tuned in" to everything, too--usually she has a bad habit of just repeating what everyone else says--I'll say something like "DD is on Christmas vacation from school this week." And she'll say (to my uncle): "Did you hear that, Uncle?  She's out of school this week." (Even though he's sitting right next to us and is involved in the conversation.  She barely did that at all and seemed to have more to say than usual.  I was pretty scared to go and see her, as she (and my uncle) are people who have been in my life forever, and the fact that they might not always be there is almost scarier than the fact that my mom won't always be there.

My mom.  I didn't spend much time with her on Christmas.  I feel bad about that.  But I felt like I needed to see my aunt, and my mom can not remember from one hour to the next that it is Christmas, so I thought it would probably be ok.  But for New Years Eve, I bought some little horns and some sparkling grape juice and we had a little party and sang Auld Lang Syne :-)  She said it was fun.  We'll do it again tomorrow :-)

And the Kindle.  Best present I've gotten in a long time!!!!  I am amazed at how many books are available for free and for .99 too--I just love it!  Right now I have a wish list about ten miles long and I'll have to figure out a way to share it with you (not really because I want you all to buy me something, but mostly because I personally feel like I can get to know a person a little better when I can see what they're interested in reading)...

Mostly, I hope you all had a wonderful holiday season.  I'm looking forward to 2012 hopefully being a little easier.  Thanks to all of you for being there for me and offering your wisdom and support throughout the year. Hugs to all of you!