DH is now down to 3 days a week

He hasn't gotten fired yet, but I know it's only a matter of time.  They've cut him down to 3 nights a week, which, after gas expenses, pretty much pays for pop and cigs and not much else.

He has another PDoc appointment on Monday, hopefully he is able to express what he feels has been happening--it seems like this could (and should) be better.

He still has no initiative at all, and his thinking is funny, lots of "all or nothing" stuff, like the dryer broke down and he says "Why does bad stuff always happen to us?" and then "We've GOT to have a dryer....." (I'm fine with a clothesline, at least until winter.....)

But I am trying to look on the bright side as much as I can--we have so much more than lots of people.  We have options.  We (both of us, amazingly, especially in this economy) have jobs....and the bills get paid.  Despite the fact that things aren't easy, we've been blessed.  And I'm trying to remember that, so that when DH says "why does it always happen to us?", I can look past that.

I can't believe I'm considering this but....

Nothing huge.  In the grand scheme of things, anyhow....

I told one of DH's friends that I would pay him to cut our grass.  I cut about half of it last week and it took forever, because the grass was just that long :-(  And the weeds along the fences and close to the house and stuff....they're as tall as I am, no kidding!!!!

So, rather than beat myself up over why it isn't getting done, I'm going to pay DH's friend to do it.  He might be sorry.

It's a jungle out there.

I've become unsympathetic.

And it shocks me.  When DH is moaning in pain from his back, I don't even feel bad for him.  I find myself getting angry, because all he wants is for someone to give him a pill (preferably Percocet) to get rid of the "pain" and he doesn't do anything at all to make sure he doesn't get the pain in the first place, like go to physical therapy, exercise a little, or maybe make a half-hearted effort to lose weight (I know weight loss is hard, even for people without mental health issues, but if he just showed me he was trying to do something, even if he was failing, it would make me feel better)....

And when he comes home from work all sad because he was sent home from work for having high blood sugar, instead of being the "supportive wife", I turn into the "angry and disgusted" wife.  Because the problem is so easy to avoid, yet he doesn't. 

And he doesn't realize these things for whatever reasons, every time it happens, even if I've told him that it will happen, he is shocked and surprised.  And I'm not.  I just get more disgusted.

And that surprises me on some levels.  I know he believes his problems are not of his doing (don't a lot of us?) and that he has a mental health condition that warps his thinking.  So should I really be angry with him for something he can't seemingly control?  I feel bad.  But I just can't see how it can be pointed out to him, step by step, and he still doesn't do anything about it.

I have no sympathy.  When he goes to the Emergency Room for his back pain, I don't even go with any more.  Because every week there's some different ache or pain.  And it's never anything serious.  Last week he was having strange pains in his ribs, under his arm, on his right side.  I just got angry, wasn't even worried about what might be going on, because it's always something.  Then, I was glad that he was gone to the E. R.  Then, I kind of mentally chastised myself, because what if I feel that way and he's really having a serious health problem?  It's like I have run out of sympathy.  It's not something I'm proud of.  But after rereading what I've written here, it might not be as surprising as I thought it was.

Signed my mom up for Hospice

It's been a strange few weeks, mom-wise.....there were about 2 weeks where she was adamantly refusing food and water, refusing all medications, and very delusional when she was awake, which wasn't very often.   There were days where they couldn't wake her up enough to get her out of bed, there were days when she refused to let them clean her or change her.  I thought "the end is near".  And opted to sign her up for Hospice, mostly, I'm afraid, selfishly, because I know I am going to need support as I go through this and I know the hospice social worker will be a support and the nurses will tell me what to expect.  I don't really believe that it is going to help my mom all that much, as she states she is not in pain (when I can get her to answer) and I believe that is the truth, because most of the time she is just groggy and sleepy, not agitated as if she was hurting.  When she is agitated, it's because of her delusions.

So I signed the forms to get the ball rolling, and set up the "intake" appointment with the hospice program, and then.....mom rallied.  She started getting out of bed, eating at least 50% of her meals (although she can no longer feed herself) and talking about real things, like the weather and supper.  And she was like that for about 7 days to the point where I wondered if maybe I had jumped the gun with hospice.  Then today was the "intake appointment" and she was back to being lethargic again.  She ate well today, but she did not want to participate in life, she only wanted to sleep.  I was disappointed, again, and I kind of mentally rolled my eyes at myself--here she is, can't feed herself, needs help with everything, can't remember things from one minute to another, but I am still getting my hopes up for the "good" days.  And I know the letdown is coming, but I just hope it doesn't, then I'm sad when it does. 

It's almost an exact parallel to my reactions to DH's issues.  Every time there's some good days, I start to think things are getting better, but really, I'm just setting myself up for another crash.  When I recognize this pattern, I feel like maybe I've got a Pollyanna outlook and maybe I need to do something to make my thinking a little more reality based.  I think intellectually, for both my mom and my husband, I know where things are at and that they aren't going to get as better as I want them to......but emotionally, I still cling to hope......

Thank heavens for mental health advocates

I insisted that DH call his worker at the program that had gotten him the job, and explain what had happened.  She wasn't surprised, I think that she was like the rest of you, kind of surprised that it took this long to happen....but she made a couple of  phone calls and got him his job back--for the most part, anyhow....

But just barely--I don't remember if I've explained how the attendance thing works there, but if he's late or misses work on a weekday, he gets 1 point; if he's late or misses work on a weekend, he gets 2 points, and on really really busy days, like Mother's Day, if he's late or misses work, it's 3 points.  When he gets to 8 points, they start cutting his hours back (he loses 8 hours per week), when he's at 9 points, they cut his hours even more than that (16 fewer hours per week)  and when he hits 10 points, he's done--fired.  Right now he's got 9 points.

I'm not sure if the mental health worker can help him when he reaches 10.  Actually, if they were as strict as they should be, he's probably got more like 20 points right now, because they didn't give him points for the days when he showed up for work but had to go to the E.R. for his back pain, or had to go home for whatever perceived health problem he was having that day.

And I think it would feel really weird to go back to work after that, when you had "quit" and then you're back, but DH is so relieved to still have a job that it doesn't seem to bother him.  I'm really relieved too, because it really helps DH feel like more of a contributing member of the family....

Unfortunately, he still has no insight into the fact that his behaviors may cause him to lose his job--I just can't imagine that, but it's true.  I tell him all the time that drinking water or diet pop instead of sugar-laden pop could make a big difference, as when he drinks the sugar pop, his blood sugar gets high and they often end up sending him home.  And he's had numerous referrals to physical therapy for his back, but he doesn't bother to go, instead he keeps going to the doctor, hoping that someone will prescribe him some Percocet.  But he won't take any action that might require any type of a change.  I finally, one day, came right out and told him that, that he was going to lose his job if he didn't start making some changes to his lifestyle.  He "tried" to change to diet pop for 2 days, then he was right back to sugar pop :-(

There have been a lot of times lately where, although I have never thought divorce was/is an option, it is looking more like a possibility than ever.  How on earth am I going to spend the rest of my life with someone like this?  I just don't know how I'll do it.  But when I start fantasizing about being "on my own", I realize a) I absolutely can't afford to do anything right now, and b) there's still a little bit of hope there, that things can get to a point where I can feel ok with them, although that hope is dwindling.

DH has an appointment with his pdoc on Monday.  I'll let you know how that goes.

DH just quit his job.

I know all of you will probably wonder how on earth he managed to stay employed as long as he did, but he's been getting slack(er) about doing things to keep his mental health stable, and last night he had a rough night at work and walked out.

He said it wasn't until he was driving home that he realized the consequence(s) of doing that.  And now I'm really scared, although I've been here before.....

He thinks that maybe if he calls his manager and explains, maybe they'll let him come back....but he's also been missing a lot of work due to health related stuff, because he doesn't do what the doctors tell him to do..... so maybe the casino is happy to be rid of him....I don't know!!!  I'll hope that maybe he can talk someone into giving him another chance...

If that doesn't work, then my next thought is to call the agency for mentally ill people that helped him get this job and see if maybe they can advocate for him....there are so few jobs where we live, that if this "sticks", it could be a long time before he works again....

And of course in the meantime I've got the husband sayin "I'm so worthless, I always do stupid stuff like that, I'm a piece of sh**...." and all I want to do is throttle him because any way I look at it, decisions he made caused this.

I'll keep you posted.

Sometimes I just can't see the point........

Well, DH is still pretty much in the same place mentally.  He's not doing much around the house at all, and if there is a way to save him from expending one extra calorie, he will take the lazy way out, even if it means doing something that upsets me.

Take, for example, cigarette butts.  They're all over the driveway.  I've provided him with cans to put them in, explained that all the litter shows a lack of pride in our yard/house/belongings and he says he'll use an ashtray/can, but then after a day or two, he's back to just flicking them anywhere.

Or the damn garbage.  He'll take the full trash bag out of the waste basket in the kitchen, but instead of putting the bag of trash into the big trash can to go out for pickup, he just puts the bag on the deck outside the door.  Same lecture from me about respecting where you live, and also that the deck is not a "garbage room", it is a part of our house/yard that the world can see, and when you put garbage out there, it says "I don't give a crap".

But the worst thing is, that I know he doesn't give a crap about those things any more.  And I look around at the grass which needs cutting again, and recognizing that if I take the time to mow it, I won't get any sleep this weekend.....and looking at all the things that need to be fixed but I don't know how and/or there's not enough money to fix them.....the screen door no longer shuts at all because of the way the hinges broke and according to the hardware guy is going to necessitate a new screen door (and someone alert enough to put it on).....the rest of the roof, which is awful (except for the part that DH's brother did last year, but I can't do that again, that was more stressful than a leaky roof!......The fence for the chicken house kind of fell apart after all the heavy snows this past winter, and, of course there's all the animal chores and the housecleaning.  I do the bare minimum--litter boxes, garbages.....sweep once in a while.....laundry.....but the stuff that takes time and attention to detail, well, I put that off because between working and my mom and sleeping, there's not much time for those things, either.

I'm a little concerned because I find myself thinking about how much easier things would be if he wasn't there.  And they would be.  And that upsets me because I didn't used to feel that way.  He just makes more work for me all around, and I don't know that I'm getting much in return any more.....then I feel selfish, because the "what's in it for me" is not usually how I think (or is it?)  I think (and I recognize that this is never going to happen but....) that if he decided to leave, right now I'd be a little bummed but mostly vastly relieved.  And I think that our story is not on the path to a happy ending.  I don't want to hurt him, but I keep trying to point out that he doesn't seem to care about anyone/anything any more....and things really don't change.  It's really hard to do both sides of the marriage all by yourself.

I'm feeling like I can't handle this place any more, either.  It's too much.  I need to live closer to my main job.....in a place that isn't falling apart all at once.....in a place that costs so much less than where we're living now....where cutting the grass doesn't take 6 hours.....but of course that's all a pie in the sky, because I need to live near my mom right now.....and I have made a lifetime commitment to the animals....and there's just no place except "out in the country" where I could have them all.....don't get me wrong, I certainly don't want any more, but the ones that are already there, well, some days knowing that they depend on me is what gets me up in the morning.....and I like where I live.....it's just that I wonder if maybe it's not very realistic any more.....

Well, that's a lot of wondering.  And not much I can do about it right now except ponder.....I've always been a person who believes (but doesn't necessarily always follow) that if something bothers you, either do something about it or shut up about it.  Unfortunately there are things bothering me, and I feel kind of trapped.  I recognize that some of the "trapped" feeling is my own doing, but it doesn't change how I feel.....I'm hoping this is just a phase...... maybe I need to get a live-in housekeeper/groundskeeper, huh?

I need to pep up--I'm really down

The good news first:  I didn't end up getting laid off (at least yet) because the judge deemed my job to be "essential" so it will still be funded even though the government has shut down.  I know some things might change if the shutdown lasts for over a month, so there is still some uncertainty....but at least I don't have to worry about that for now...

And the rest?  Just sad news.

My mom has been extremely sleepy, to the point where she can't/won't wake up.  She is refusing food and yesterday she refused liquids too.  I'm very afraid, because although there are "good" days in between these no-eating/drinking days still, the "good" days are where a) she opens her eyes, b) she asks about my day and c) she eats a few bits for supper--so as you can see, even the "good" days aren't very good any more.

I'm really grieving.  My birthday was July 7.  It was the first year that she didn't know it was my birthday.  And lately I've been so much wanting to just call her up to hear her voice.....but then I have to remember that she doesn't know how to use a phone any more, even if she was alert enough to talk....

The nursing home was concerned about her sleeping so much and tested her for another UTI.  Of course it was positive, and the culture showed that the UTI might respond to an oral antibiotic, so they started her on it....but nothing changed at all.  So the nursing home called me to ask me how aggressive I wanted to be with finding out what's going on....and I said I don't know.  Right at this moment, she really has no quality of life that I can see....she's not enjoying herself, and even the "good" days aren't very good.  But if there is a treatment that could improve her quality of life, I don't want to forego that, either. 

I'm scared.

I requested that the nursing home social worker contact me about getting my mom started with hospice.  When this was brought up a couple of months ago, I thought that we should reach a decision as to the resistant UTI first.  Then my mom got a little better for a couple of weeks, so I put it off....But I think it's time.  And the denial part of me is screaming and pounding the floor with her fists.  My mom can't die, she just can't.  But she's going to, and unless she starts eating and drinking, it'll probably be sooner rather than later.

I woke up this morning and remembered that the social worker would be calling today, and then yesterday came back, where my mom couldn't seem to summon enough strength to draw liquid up into the straw, and where she got angry with me for trying to get her to drink even one swallow of liquid....and how she slumps over in her wheelchair, and how I'm having a harder time understanding her, and she's having a harder time finding any words at all.....and my heart started pounding and I got all scared again.....I wanted to go back to sleep, but of course I had to go to work and even if I could have stayed home, with my heart pounding like that, chances are, I wouldn't have been able to sleep anyhow.....

And then I realize:  I've been "taking care of" my mom for over 20 years, since my dad passed away from lung cancer in 1987.  At that time, my mom's entire life was my dad and us kids (my brother and me), and in addition, my mom never learned to drive, so she mostly depended on the city bus and my dad for transportaton......but my brother and I were both young adults by then, and we "flew the nest" shortly after that....so my mom ended up pretty isolated and started drowning her sorrows in beer (she had never ever had a drinking issue before my dad passed).  I tried to get her to try new things, but (as was to become the story of my life for the next 25(?) years) she refused to try new things unless I went with her.  So I got her to join my bowling league, even though she had never bowled before.  I made sure we got out to eat, went to places where she wouldn't go otherwise...one year we went to Duluth and stayed overnight because she said she hadn't been there in years......and I took her to the casino, I even took the "seniors bus" with her to the casino, hoping that she would decide to do it herself once in a while....but really....she never did take much initiative to try new things on her own....maybe it's just her generation, or her personality, I don't know....

But the same thing continued even when she moved to the assisted living facility, because even though they had a lot of activities and stuff, she was afraid to try them without me.  So I attended the sing-a-longs, exercise classes, and went along on the assisted living bus to go shopping (once again hoping she could do it herself, but she never could) and attended all the special celebrations they had there.....and when my mom transitioned to the nursing home, she wouldn't go to the church services without me.  I still go to "church" at the nursing home every Sunday, although in the last few weeks, it's been about a 50/50 chance of her being alert enough to go.....and now, it's ice cream.  It's the same but different.  I get to the nursing home every night at about 7pm (that's when I get back from work) and at 7:30 the staff brings around snacks.  Although the rest of the world can see that I'm overweight, my mom has consistently been convinced that I don't eat enough, so she wants me to eat ice cream (the nursing home serves ice cream in little 4 oz cups).  And she will only eat ice cream herself if she thinks she is doing it in order to get ME to eat some.  So every night for the past few months, we've had ice cream together.  Even now that she's been needing me to feed it to her, she still won't eat it unless she's convinced that I've got some too, and that I'm going to be eating it if she eats hers.  Yesterday the ice cream was the only thing she ate or drank.  And she refused nearly all of her pills, too.  Unfortunately, this "I'll eat it if you'll eat it" only seems to work with ice cream, not supper :-(

My point, I guess, is that I've been "taking care" of my mom for so very long....I truly have no idea of how my life would be if she was gone.  I have planned so much around my being there for her, I'm already starting to feel lost....even on the days when I get up after 3 or 4 hours of sleep so that I can go to "church" with her, I feel a sad disappointment when she isn't awake enough to go....

And there's the other side, too....my mom's been "taking care" of me (of course), for years, too.  When her Alzheimer's was yet just some "eccentricities" and not yet truly apparent, she would walk to a local dollar store and buy me bags and bags of food from the dollar store.  Way more than even a family of 8 could eat, even if they didn't eat anything else ever....but she would do it all the time, because she was concerned that I wasn't eating enough.....and she would get very hurt if I tried to tell her I already had plenty....and she would call me every night just to say hi.....when I think of all the times I really didn't have much to say, or was too busy to take the time to have a real conversation, it kills me, because I would give anything for just one more phone call......

I don't know how I'm going to get through this.  Before my mom got it, I thought Alzheimer's was just a disease where people couldn't remember stuff....kind of like an old person's amnesia....and every time my mom has moved to a different stage, there's been grieving involved....now it looks like she's running out of stages...