Tuesday, February 22, 2011

Disability Hearing

DH had his disability hearing today. I’m amazed, but it sounds extremely hopeful. Apparently there were statements from numerous doctors regarding the fact that he can not function on his own, and if he was required to live independently, he would likely require a group home.

So…..it sounds like….DH made "too much" money last year at his security job. But what that means is, that if the judge finds that DH is/was disabled, he would still get the back pay, and he would be "on disability" but he would not receive any payments until/unless his income went down (i.e., he starts working less or loses his job).

Apparently the attorney made it sound like the back pay is almost a sure thing (it would be about $18000 for us!) and then if he loses his job, he could just fill out an application to have his benefits redetermined and he would be getting about $1400/mo!!!!!!!
I’m still not confident. I’ll believe it when I see it J

But DH told me that the attorney told him "in two to four weeks, things will be a lot better for you guys…." And that she (the attorney) was very confident and said that everything went exactly as she wanted it to…..and that this particular judge "likes" when a person keeps trying to work despite their disability……

This would be potentially triply good news, because where DH is working, they have a "point system", where if you are late, you get 1 point, if you call in on a weekday, you get 1 point, if you call in on a weekend or a holiday, you get 2 points, and when you get to 10 points, you are fired. Yesterday, DH called in to work again….and that makes 9 points. So….potentially, if he gets fired, we might not be completely "up a creek".
And also….I had just decided that I was going to raid my 401k from my previous job to pay a couple of things off (like the engine) (and the $1400 hospital bill from last year’s hospitalization for DH)….I know it’s a bad idea, but things are so very tight right now that there is no other way I could ever pay for these things. I really did not want to take that tax hit, but didn’t see a lot of alternatives short of bankruptcy….and I don’t want to file bankruptcy on bills that are local—does that make sense? Like the 4-wheeler loan, that’s with a local credit union….and the hospital bill….with a local small-town hospital….I just couldn’t stand the thought of hurting my local economy in any way (but hurting a big bank isn’t so personal….I guess…-).) For the most part, I really felt like the 401k was the best route, even if I had to rob from my future.....

Now I think I’m gonna wait 2-4 weeks and see what happens……

Saturday, February 19, 2011


We have now set things up so that DD comes home every other weekend for a visit.  However, since I'm still working 2 jobs, I haven't been all that involved in the visits--it's been mostly DH.  DD had an exceptionally good visit two weeks ago, where she was like the kid that she was before the worst of this stupid stuff happened.  Both DH and I enjoyed the visit tremendously, and were hoping for more.

This week, however, I'm seeing/feeling things I don't know how to describe.  First off, when we were scheduling the visit, DD got angry with me when I wouldn't do things her way.  She hung up on me.  I imposed a consequence.  That was all normal and as good as can be expected.  But I think since DH had so much fun during the last visit, he's really jumping the gun with this one.  DD's consequence still has not been performed, I think DH has forgotten about it completely.  He consulted with me after we got her home for the visit and asked if I thought it would be ok if she had her friend over for a sleepover.  I said "we should wait and see how she does tonite and tomorrow morning before we decide."  To me that sounded like a "let's evaluate this together when we get to tomorrow."  But to DH it sounded like "if you think she's been good enough, go ahead."  So he decided it was ok.  And I'm pretty frustrated about that.  But maybe it was my fault for not communicating clearly what I was expecting.  I know that when my "gut" feeling is that I'm mad, and I can't put into words why that is, there's still probably a legitimate reason.

Then, Friday was payday for both DH and me.  It's the day when I give DH his "fun money" allowance for the week.  I normally get home from work at 6:45pm.  He had already called me on my drive home to see where I was and did I have his money?  But I had to stop at a place to pet-sit (it's kind of my intermittent 3rd job) for some people before I got home.  So....while I was still driving to the pet-sitting, he called again asking where I was.  And then after I had been there for 10 minutes, he called AGAIN.  Then, when I turned on to our road, DH apparently got both girls in the car and drove up the road to intercept me on the way so that he could get his stupid money as fast as possible.  I'm irritated about this, to say the least.

This was a remnant of one of our/my problems when DD was living at our house--DH is not a dad to her a lot of the time, he's like another kid.  He just wants to have fun as much as DD and he does not make being a parent or setting a good example a priority.  And she takes full advantage of it.  So it makes me angry with both of them, although I realize intellectually, DD is just doing what kids do: taking advantage of a lack of limits wherever she can find them.  There's no excuse for DH not to step up to the "dad" plate.  But then I fall into the "how much is he capable of, am I expecting too much with his mental health issues?"

On a better (for my sanity) note: The residential treatment center where DD is staying is going to petition to have her stay there past her 18th birthday.  This is a big relief to me, because they were really pressuring me to decide if she was going to come home or not and, while I don't think it's realistic to think that she's "better" enough to come home, I also don't want to be the meanie who basically (in DD's mind anyhow) says "we don't want you any more."  We've already had some set-to's on that issue, because DD now knows that if she cannot improve her behavior, there is a group home placement in her future, and she is hurt and angry about it.  So the fact that the RTC does not think she is ready to go anywhere is a big relief to me.  Maybe a miracle will happen and she will be able to turn things around to where we could make it work.  And if she can't, maybe we can procrastinate that decision to where there is less stress and drama in my life at the time (I know--how likely is that?)

Tuesday, February 8, 2011

My mom is falling apart, piece by piece....

The nurse practitioner called me and let me know that my mom's hemoglobin was at 8.2.  8.0 is usually the cut-off for when someone needs a transfusion.  She offered me some options--1) do nothing, let nature take its course (since I was already agonizing about life and death decisions with Sarah, this one was tough to entertain.... and 2) do the transfusion and see how long her hemoglobin improves for and reconsider...and 3) do a whole bunch of tests to see if we can figure out where the bleeding is coming from.  That one isn't under serious consideration, because first of all, my mom has been anemic for years and has had CT scans, MRIs, colonoscopies, esophageal scopes and other tests to find the source and nothing has ever turned up and also....my mom is so frail right now, even if we did find something, there probably wouldn't be much we could do about it--it's not like if we found colon cancer, for example, that we could do surgery or chemo or radiation, so what's really the point of putting her through all those tests that are so stressful....?

After looking online and talking to some people, I had pretty much decided that a transfusion (at least the very first one ever) would be minimally invasive and with very little risk of side effects, so I was pretty set to go ahead....

Then I went to visit her, and the first thing she said was "I'm not sure how to tell you this, but I'm going to be coming into a lot of money tomorrow. More than a hundred dollars! I'm in shock! The caretaker here (NH?) is going to give it to me."....so right away I ran into the hallway, caught the charge nurse and asked her to order a UA--sure enough, hazy urine with "many" bacteria Frowner I'm losing count of how many UTIs this makes. They're starting her on a CEPHA antibiotic until they get the culture back. I'm suspecting, since the NP warned me that it could happen, that this is the VRE again....sigh....

But wait! There's more! The charge nurse examined her and there was a small amount of bloody fluid coming from her left ear. Then, a few hours later, there was bloody fluid coming from her right ear, also. NP will be officially checking this today, but general consensus is ear infection(s) in both ears. My mom says she has no pain, thank goodness...

They say the CEPHA antibiotic will also help the ear infection(s)....but this is very scary to me, as I cannot remember the last time my mom had one ear infection (maybe 30 years ago?) let alone two (never?)...

It's like an old car where more and more parts wear out until you just can't fix it any more.

And I'm not ready for this.

Sunday, February 6, 2011

Rest in Peace, Sarah (woowoo dog) 1995-2011

Well, that part of my saga is over.  I made the appointment and brought her in.  And though I "pottied" her twice in the fifteen minutes preceding her appointment, she still had an "accident" when we got to the vets.  I'm not sure why, but I saw that as some kind of sign that I was doing the right thing.

The vet, whom I've known for several years, was awesome.  I've had a number of animals "put to sleep", but this time, with Sarah, it was really like she did just go to sleep.  She was even snoring.  I still had some doubts and trepidation right up until the last minute.

When the vet announced that she was "gone", I was sitting on the floor with her, rubbing her ears.  It was so peaceful, it was hard for me to believe she wasn't just taking a nap.  The vet sat down on the floor with me and asked me how we got her, how old was at the time, and I shared some stories.  Then he told me that he thought I did the right thing and he talked briefly about old age and lingering, as he knows about my mom (he was the vet who put my mom's cat to sleep not too long ago, too) and the Alzheimer's, and he shared that his father had recently passed away at age 85.  "He was just walking along and he dropped.  And that was it."  And we talked about that for a little.

I left, feeling comforted and at peace with the decision.  Of course, every time I come home and there's no mess on the floor, it hits me again--isn't that pathetic?  I cry because nobody peed on the floor.

That dog was one of a kind.  I'm going to miss her.  Sometimes I'm still not sure if maybe I should have waited a while longer, but there were some very direct parallels to my mom's illness--Sarah had "good" days and "bad" days, and on the "bad" days, I was very certain that it was her time.  It was the "good" days that made me doubt myself.  However, I can't change it now, so I just need to revisit all the "bad" days and convince myself that it was right.  Most of the time I can do that.

Thursday, February 3, 2011

Time to make a Dr. appt...I suppose...when I have time...

I participated in a clinical study for caregivers recently.  Yesterday I received this in my email:

"......Hope you are having a good week!

We have been looking at caregivers' responses to the first set of questionnaires that you completed. One set of questions asked about caregiver burden and stress, and the other set asked about feelings of depression. I wanted to share your score on each questionnaire. Note that this information is and will remain confidential. These questionnaires are used by health care providers in many settings.

Zarit Caregiver Burden Inventory

The Zarit questionnaire measures feelings of stress and burden. Possible scores on this scale range from 0 to 48. A higher score means a higher level of stress and burden.

Scoring guidelines:
0 – 11 = little or no burden
12 – 23 = mild to moderate burden
24 – 35 = moderate to severe burden
36 – 48 = severe burden

YOUR Zarit Caregiver Burden Inventory score: 35

If your score is 24 or above, I strongly encourage you to bring this up with your doctor as soon as you can.

Center for Epidemiologic Studies Depression Scale

This scale, called the CES-D, measures feelings of depression. Possible scores range from 0 to 30. A high score means a higher level of depressive symptoms or feelings.

Scoring guidelines:
7 or lower = few or no depressive symptoms are present
8 or higher = some depressive symptoms are present

If your score is 8 or above, I strongly encourage you to bring this up with your doctor as soon as you can.

YOUR Center for Epidemiologic Studies Depression score: 20

Now what?

These questionnaires do not provide a diagnosis, but may indicate an area of concern. You may want to talk about your feelings with your doctor or a counselor since your scores on both assessments were on the higher end. I have also attached two documents for you that discuss caregiver stress and depression, which may be of some help."

I know I've been stressed out, and suspected I was depressed but...jeesh!  I'll be making an appointment as soon as I have time (it will have to be on a Saturday, but I can do it....it can only help, right?)