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...

Here we go again (?)

Well, as you probably remember, after my layoff in January, 2010, I got a job with a local county government.  I love my job, more than I ever could have imagined.  I think I'm good at it, and I love my coworkers and the culture there.  But....

Not sure if it's been on any news outside of MN, but....the MN governor and the Legislature cannot come to an agreement about the budget.  So far, it sounds like they are miles apart.  If they cannot reach an agreement by July 1, the government will "shut down", because there will be no funds for anything that is funded with State money. 

Working for a county, we were "safer" than actual State employees, but in reality, many of the programs we administer are State-funded, and also, many of the computer systems we work on are State-operated.  So potentially, if there is a shutdown, there would be no work for us. 

I got my "in the event of a shutdown, there will be layoffs" notice from the union.  I think....although, since nobody I work with has ever gone through this, so I can't get a "for sure" answer....that if I were to be laid off, I would be called back when the shutdown is over.  So I'm not as worried about that as I was with my corporate layoff.  But....if it lasts very long....Unemployment is state-run, too.  The Governor is trying to make sure that Unemployment stays running, and that the programs/systems I work with stay running, too, but the judge hasn't decided what will happen.

I guess I'm kind of ambivalent about this--I could use some time off.  My mom has declined considerably and most days now struggles with her words and the delusions have become a "normal" thing.  There are many days when she refuses to eat, and some days where she refuses her pills, too.  Often when I am there, I can get her to eat, so spending more time with her would sooth my soul, for sure....I know "they" say that when a person starts refusing food, it's the beginning of the end....but.....some days she doesn't, and eats quite a bit, so I really still don't know how close to the end we are in this journey...I am certain, however, sadly, that we are fairly close to the end.  I'm guessing a couple of months, but I've never been through this before, and I really hope I'm wrong.  Even though I really can't talk with her any more, beyond telling her "it's raining out" or "was there any music today?" I already miss her so much....I'm not ready...

So the shutdown would be beneficial in that regard....but the uncertainty is stressful, too.  What if I got laid off and the unemployment office was closed, too?  What if I didn't, for whatever reason, get called back?  What if a shutdown lasted quite some time?  So I would be very ok if the shutdown doesn't happen.  Right now it's not looking like that'll happen, but there are four more days where they could come up with something....I guess we probably won't know for sure until Thursday, the 30th of June, whether there will be a shutdown or not, and whether my job will be affected or not.....

Funding for new mental health and dementia drugs dries up

Following is a snippet from an article in the journal "Nature" regarding funding for new mental health drugs.  Click on the link to read the entire article--it's surprisingly easy to understand and scary.

Psychopharmacology in crisis

Researchers warn of 'withdrawal of hope' as funding shrivels.

Daniel Cressey

Patients face a "withdrawal of hope" as neuropsychopharmacology funding falters.SOVEREIGN, ISM/SCIENCE PHOTO LIBRARY

Many people affected by mental illness are facing a bleak future as drug companies abandon research into the area and other funding providers fail to take up the slack, according to a new report.

Produced for the European College of Neuropsychopharmacology (ECNP), the report warns that "research in new treatments for brain disorders is under threat". With current treatments inadequate for many patients, it says, "withdrawal of research resources is a withdrawal of hope for patients and their families"¹.

Here is the link to the entire article....

http://www.nature.com/news/2011/110614/full/news.2011.367.html?WT.ec_id=NEWS-20110614

I always comfort myself, when I look at my mom and wonder if that's my destiny, too, by telling myself "well, if it is, the treatments will be much better by then...."  so this article was an unwelcome eye-opener.

The new normal.

I guess it's time for me to start recognizing that who and how DH is, is likely how it'll be from now on.  His medications seem to have (for the most part) stabilized him, and there is good and bad with that realization. 

"That Guy" rarely makes an appearance any more.  The only time we see him now is if DH hasn't been responsible about getting his medications refilled and has gone without taking his Lithium and/or Depakote for a few days.  Otherwise, except for a brief "breakthrough" sighting (where "That Guy" isn't quite controlled completely), he's pretty much gone.  And that truly is a relief, because I believe that "That Guy" has posed the biggest risk to our marriage.

With "That Guy" gone, I realize that there have been tradeoffs.  When "That Guy" and the bipolar were in full swing, and even before that, when we got married, DH was very ambitious.  He kept the house spotless.  He was always fixing something, or cutting the grass.  There were days when he couldn't stop cleaning.  My friends were HUGELY jealous.  It's weird, when you recognize that there is something good in a mental illness, but that's the truth.  Now that DH is on the "right" medications, the angry, irrational "That Guy" is gone, but the ambition is gone, too.  DH no longer cares about how clean the house is.  At all.  It's hugely frustrating for me.  And nothing gets fixed, either.  I'm actually thinking about whether I can afford to pay someone to cut the grass this year, because last year it only got cut twice.  And this year, unless something changes (with me), isn't looking any better.....I know it feels much better to me to come home and see the yard looking nice.  So I'm trying to decide if there's money in the budget for that.  I'm pretty sure there's not, because I can't think of anywhere else to cut corners.  Oh well.

Now, the only time DH does something is if I bribe him with cigarettes ("I'll buy you cigarettes if you clean the kitchen.....") and then it might only be a half-a**ed job.  Or if I get really angry about the situation.  He has said several times to me: "I know the cleaning is up to me.  You already do so much.   And you don't have time to sleep, let alone clean.  And I have three days off most weeks.  I've got to be the one who does most of it..." but then he doesn't.  A lot of times he doesn't even bother to put garbage into the waste basket, he just leaves it on the kitchen counter.  And then I blow up.  And then I feel bad, because I'm being mean.  But I don't know how else to do this.  I guess this is a learning part of "controlled" bipolar--adjusting to DH's abilities and determining what is "forgetfulness" and what is "laziness".  I suspect that a lot of the time it's more of the latter.  But he does truly forget a lot of stuff.  And he seems to lack the ability to see the potential consequences of an action sometimes until I remind him.  And that is "new" with the bipolar, too.

Since DD has been gone, he's once again been on more of an "even keel".  It's very hard for me to know whether it is/was her issues that made things get worse, or if it is/was giving love and attention to a third person....or the responsibility of caring for her when she needed so much....?  I'll be giving that a lot more thought before I come to a firm conclusion on that, if I ever do.

The hardest thing, though, is, that things really haven't changed much in some time.  So I'm kind of losing my hope that someday he'll get "back to normal".  I'm starting to recognize that this IS "normal" now.  I love DH very much and don't want a divorce.  Some days, though, I envision what it would be like to live by myself, where all the garbage made it into the trash, where I didn't have the disappointment--like when he SAYS he'll cut the grass, and then he doesn't.  And sometimes I wish I could have a life mate who was able to work hard, have a job with more responsibility, more money, so that I could quit this second job.  Someone who could see that the grass needed cutting, would go out and cut it, and take pride in how good a job he did.

But I try to continue to remind myself to count my blessings as much as possible.  I have a life mate.  Lots of people never find that.  We speak the same "language"--he gets my jokes, I get his--we know what is important to each other, and we can talk to each other and know we will (usually) be understood and heard.  We respect each other when we disagree.  That's a big one.  There are a lot of things that could be worse.

There was a story in the Minneapolis paper today, about a man who had once had a cocaine addiction.  He met his wife in treatment, and cleaned up his act, had children, a job, a home....and then he secretly relapsed.  He went to a house where he thought he could get some cocaine, and instead was severely beaten by gang members.  Now he is in a nursing home.  He's unable to string more than a few words together.  He can't hold his head up, let alone cut the grass.  His medical bills are astronomical.  And while his wife still holds out hope, really all she has now are memories of how he (and her life) used to be.  I read that story today and realized that even though "what used to be" may be gone, I'm still pretty darned lucky, and so is DH.  It's that mindset I need to hang on to, and keep myself remembering all the things that I'm grateful for.

Well, it's official....

DH has received notice (again) that he is not eligible for disability.  Apparently somewhere in his psychiatrist's records, his psychiatrist had noted that DH was responding well to his medications.  So then when the psychiatrist later stated that DH should not work, they said that was inconsistent information.  His attorney is (once again) appealing the decision, stating that the decision does not reflect the record...but I think it's probably like the justice system, where appeals get harder and harder to win, the farther up the chain you go....

DH was upset, and did a little of the "I'm a worthless piece of ****"....but really, after 1 day of that, he was back to his "normal" self again.   I think the fact that it took so long had already prepared him for the fact that he wasn't going to get it....so I guess it was easier for him to handle.

Me?  Yeah, I'm disappointed.  That money would've helped so much.  And hoping that something like that will happen and solve a lot of problems, well, that hope is something, too.  But I guess it's all going to have to be done the old fashioned way.....rats!

DD says she loves the group home....

I've asked her a few times now, and she says she loves it there.  She's (so far) getting along with everyone.  She's excited that she'll get to cook for her housemates.  She says the staff is nice, and the housemates are nice, too.  It's a huge relief.

I, as Mom, am having some trepidation, of course.  Since DD is so immature, I kind of feel like I just sent my 11-year-old out to live as an adult.  And I'm hoping and praying that she learned enough at the RTC to get along in a household without a parent....I'm so glad I'm her guardian!  Today the group home called me to ask me if DD could get her hair cut.  I said yes, of course, and was excited that they called me to ask first.....then I remembered that DD did not have any money.  I decided that was not currently my problem, so I didn't call them back.

Surprise, DD called me back to ask me if I could take her to get her hair cut.  Apparently she is realizing that the group home doesn't pay for a lot of stuff.  I really really didn't want to drive 30 miles to the group home just because she wants something, so I told her some other day.  I think what I'll do is make out a check to the hair place and drop it off at the group home on my way home from work on Monday.  Then a staff can take her.  Sunday (as you might remember) is the day I get off work at 8am, take a little nap and then go to "church" at the nursing home with my mom.  And today (Sunday) since I've been told that she is not eating well, I'll be staying for supper, too--just in case I can help.

All in all, DD seems to be adjusting.  And I am adjusting, and so is DH.  I know, though, that she is still in the "honeymoon" stage--after all, it took her a month to have an outburst at the foster care home....so the real test will be the first tantrum......  I'll keep you all posted...

The past two weeks....

I'm very sorry I haven't written in the last two weeks--it's been a whirlwind of activity and I just got overwhelmed with it all....I'll try to sum it up for all of you...

We left off with DD in jail.  We had the guardianship hearing, and I am now her legal guardian, which will help the court recognize that she may not be responsible for her actions in the future, which my keep her out of jail next time....or at least keep another assault from turning into a conviction....I'm still not exactly sure how the guardianship protects DD beyond the decisions I am allowed to make on her behalf, but it sounds like if you are going to commit a violent crime, having a guardian is a good thing (rolling eyes)....

DD also had her first court appearance on the two counts of domestic assault and one count of disorderly conduct.  Her court-appointed attorney requested a continuance so that they/we could see if the fact that the guardianship was pending at the time will help DD keep this off of her record.  Her next court appearance is on June 28.

After court, as I expected, DD had no place to go.  The foster care lady of course would not take her back, and there was no plan in place for an alternative placement......so we allowed DD to come back home with us but made it clear to everyone in the courtroom that it could only be temporary, because we did not have the skills to keep her/us safe in the long run.   At that point, there was still no funding available for a traditional group home.  However, fortune smiled (for once) and it turned out that a funding recipient in the county had passed away over the weekend, and so DD was able to receive the funding that had previously been allocated to that person.  So her social worker started to get things moving for DD to move into a group home.

They found a group home that was willing to take DD, but after the director read DD's file, the price went up--apparently she has more behaviors than their standard funding provides for...hopefully that'll all work out, though...

DD was at our house for two weeks, and she did very well.  Of course, neither DH nor I confronted her on anything at all that might have been likely to provoke a tantrum....if it didn't involve safety, we let it slide....I think DD was very much hoping that if she was really, really good, then she could come back home to stay--but I saw enough of her attitude to know that the violence and tantrums were just lurking beneath the surface, and no way was I going to deal with that....

Telling DD on the last night that she was moving in the morning was a real challenge.  Nobody was sure how to do it without provoking a tantrum.  It turned out that it was left to me, because DH was at work that night, and I was home.  So I kind of put DD in a spot by saying "Well, your social worker thinks you probably aren't mature enough to handle this information, but Dad and I told her you were mature enough...."  so of course then she had to be mature!  I saw her face get red, and the pout come on, and I thought "Uh-oh, here we go...." but then she caught herself (because she wanted to be mature) and just got really quiet.  Then she asked if I would take her to Subway (I did--anything to keep the peace at that point).....

She moved on Thursday morning.  And the week has been a blur of meetings with her therapist, social worker, school, the people who help with funding, doctors (for physical and mantoux)....one day we had FOUR appointments in the same day!!!  But it's over now.  And I feel better than I have in a long time.  Hopefully, this IS where she will be for quite some time.  Hopefully, they will be able to get her tantrums under control after they experience them.  Hopefully she won't do enough harm to be kicked out.

In the meantime, DH had a kind of regression.  Things had been, while not back to how they were when we were first married, mostly stable and predictable--he's been doing at least one or two chores that I assign him per week, and things have been comparatively smooth.  However, it seemed that when DD came back, he was so worried about being the "cool dad" again, that he kind of lost his stability.  He started spending all of his "allowance" on taking her out to eat, renting her movies, etc, then got very stressed when he was out of money.  He once again started to make decisions regarding her without consulting me, even though neither he nor she is skilled at recognizing possible consequences of a decision.  It made for a lot of tension between DH and I, and additional back pain for DH.  I guess I didn't realize how much DD played into some of the troubles that DH has had.

That kind of shocked me and made me nervous, because I still would like to adopt a child (someday) who maybe doesn't have as many special needs as DD.  I know that statistically speaking, and lifestyle-wise, DH will probably pass on long before I will--after all, he's 200 lbs overweight, smokes more than a pack a day, and does not manage any aspect of his health beyond his bipolar medications.  And if that were to happen, I would be alone.  I don't particularly like my brother.  My mom is already kind of gone, as I can't really talk to her much about my life any more.....and even the stuff I do tell her, she forgets by the next day....it would be nice to have family at some point......so the fact that DD exacerbates DH's symptoms/issues is a little bit alarming.....but I guess in the long run, things will turn out the way fate has planned.....I suppose I'm still not really completely too old to have a child of my own, but the odds get slimmer and slimmer every day.....I guess time will tell what the future holds....