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!

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.

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......