My Mom passed away

Well, I guess you all knew it would happen, and what an update, huh? I knew things were getting bad, she really wasn't talking much any more, and then they changed her to pureed food only, because she seemed to eat more when the food didn't have to be chewed up. A couple of months after that change, she was pretty much refusing all food except yogurt and ice cream, but she was drinking plenty of fluids, so the nursing home made sure that she got her calories in that way. She (of course) wasn't gaining any weight, but it made me feel better to know that she was still taking in sustenance.

One night I was at the nursing home feeding her and she aspirated some milk. I hadn't been able to tell if she had swallowed or not, so I stopped giving her the milk. I'm glad I did that because she still had milk in her mouth and must have forgotten that, because she inhaled. Then she started coughing and it sounded like she was drowning. I was so scared! But the nurse said (after checking her out) that nothing went into the lungs, it all just kind of was in the throat. Whew. But about a week later, I got a call from them, because it happened at lunch time, too. They were feeding her yogurt and she aspirated it, and couldn't swallow. They ended up having to use a suction machine to suction the yogurt out. At that time, hospice decided that they were going to stop offering her foods and only offer thickened liquids. At this point, hospice told me that if my mom continued to drink enough, they thought she could last "for a few weeks" but if she was not able to swallow the fluids, then it would only be a matter of days.

On April 21 I got the call, that my mom was choking on everything that they offered her--water, juice, etc., so hospice thought that it would make things worse to try to get her to drink any more. I knew this was it. I took the week off work and spent the rest of the time with my mom. I was with her 24/7. My brother came with his family to visit, but he was so busy keeping track of his kids that he really didn't get much one-on-one time with her. I was glad he came though. That was on Tuesday.

On Wednesday, after listening to my mom's breathing, the hospice nurse predicted that it could be any time. But it wasn't. There was no change throughout the night, and the same on Thursday. I told my mom that her brother wasn't going to make it, as he was having health problems too. I couldn't think of what she could be lingering for, except that maybe she wanted to spend more time with my brother, but he didn't seem inclined to come back. I did keep him updated every few hours. On Friday, there was still no change. When I talked to my brother on Friday night, he said, "some people at work said I should go back up there, what do you think?" I said I thought they were right. So he came up Friday night. He got to the nursing home at about 10:30pm. I left for a couple of hours to make sure he spent time and talked with her etc. I came back at about 12:30am. My brother left at about 1am. I said to my mom, "He went home now, but wasn't it great that he came?" I was holding her hand. The hospice nurse had given me a cd with old hymns on it, the same hymns that we sang every week at the church service at the nursing home. I played the cd and sang along. When I realized I didn't know all the words, I ran and got a church hymnbook and used that to do a better job of singing. At about 2:30am my mom's breathing changed, and I stopped singing. I told her I loved her and I knew she loved me. I was still holding her hand, although it was very very cold. Then her mouth moved a couple of times, not in a painful way, though. Then, although she had not had any movement except eyelids in days, my mom pulled her hand out of mine and was gone.

I am still heartbroken. I thought that I had already done a lot of grieving, but boy was I wrong. My mom had become such a part of my life, visiting her, going to the church service with her, taking her for walks, feeding her, I am lost. The funeral was on April 30. I'm back to work and just try not to think about it while I'm there, as all it takes is one "I'm sorry to hear about your mom," to bring the tears back.

I still have some thank you notes that I need to write, to the nursing home, to the hospice, and to a couple of caregivers at the nursing home who really provided care far beyond what was expected. I learned so much through this journey, and I am sure it will continue to be a learning process.

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.

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?

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.

Mom update:

I think you all know that I had enrolled my mom in Hospice back in August.  When I called them the first time, she was refusing food, liquids, meds....very combative when she was awake, but very sleepy and difficult to rouse most of the time.

I had read, on the Alzheimer's Association web site (www.alz.org) that sometimes people can "rally" when they begin a Hospice program (it's theorized that maybe the extra attention/pampering helps).  I kind of chalked it up to "wishful thinking" and even if some people did rally, well, probably my mom wouldn't, as she was pretty out of it.

Amazingly, though, we've had these last few months as a "rally" of sorts--she began again to eat and drink, and accept her medications.  She even went to exercise class on occasion, where prior to Hospice, she had adamantly refused to attend any activities.  This is not to say, of course, that she got "better", really.  She no longer knows who I am most of the time, and when I tell her "Hi Mom, it's Carol", she says "What is your real name?"  She believes my name is Donna Mae, for some unknown reason, so I say "Well, some people call me Donna Mae"....and she says "That's what I thought!"  And smiles because she knew.

Aside from me being "Donna Mae", though, things have really been stable.  I still go to see her every night after work.  It's gotten more difficult for me emotionally to do that, though, sometimes I really have to force myself, because it's so hard to see.....but I tell myself that no matter how hard it is for me, it's got to be ever so much harder for her....and she needs to know (even if she forgets) that someone loves her....so I keep going.....

And now it's gotten even harder, because it appears that the "rally" has ended.  Once again she's extremely paranoid and delusional, refusing food, water, meds.....hard to wake up.....and of course I start wondering: "Is this it?  Is it time?"  I wonder if it's another UTI.  Even if it is, though, I don't think much will be done, and that worries me in a confusing way.  How can I sit here and do nothing, what if something could help.....?  Did I make the wrong decision by getting Hospice on board?  "She rallied once here, maybe we can figure out how that happened, and we could get her back to that place...."

I'm really struggling with that right now.  My heart is not ready to let go, even when it's so hard to see her.  My heart is still thrilled when my mom looks at "Donna Mae" and says "I feel like we've known each other for years!"  But in reality, on 90% of the days, I know my mom isn't having fun.  Her quality of life is very small.  And me wanting to keep her around......probably that's selfish.  But I also don't want to "hurry" things along, either, because while this disease has been so terrible, and there has been grief at every turn, there are moments and memories to treasure.  Have I mentioned  before that I think my mom has a setback every November?  It took me quite a while to figure out that it's possibly the time change/change in routine that brings on more confusion.  So I guess I shouldn't be surprised at the latest downturn, but I still am.

Precious day

Today I took the day off (but I'm at my other job right now typing this)....

The nursing home where my mom is had their first ever Walk for Wellness.  Family, friends, volunteers, nursing staff and nearly all the residents took part in a one mile walk, including my mom and me.  The goal was to raise money for new exercise equipment for the Wellness program that they have at the nursing home, which helps residents with strength and balance, enhancing their quality of life.  DH was "supposed to" come too, but he had several health concerns that may or may not have been as troublesome as he made them sound....anyhow, he didn't go.....

When I got there this morning, I could tell it was going to be a "good" day.  I asked my mom if she wanted to go on the walk and she did.  Not only that, but she was ready to get out of her wheelchair and REALLY walk! :-)  (but I told her she could ride!)

It was a warm summer day and everything went off without too many snags.  My mom said it was nice to be outside.  We did the entire walk, then went back to the nursing home for hot dogs, beans and watermelon.  I couldn't believe it, my mom ate the entire hot dog (but only a couple of bites of bun)....and all of her watermelon and a couple of small spoons of beans, too!  I asked her if she was tired and she said "No, this is fun!"

There was a bit of a lull, which was filled by a very talented 14 year old girl who sang songs from many eras--she started off by singing "We Will Rock You", and I wondered about the choice of music for all these elderly folks....then....I noticed....MY MOM WAS SINGING ALONG AND TAPPING HER FINGERS!!!  When she noticed I was watching her and smiling, she said "I don't even know this song!"  I've been smiling all day just from that memory....

We sat for quite a while in the sun, and I frequently asked her if she wanted to go inside, and she didn't.  Then they had an auction of donated "goodies" with a real auctioneer.....my mom loved it, and I loved seeing her so happy....and judging from the prices that some of the donated items brought ($7.00 for 12-packs of pop!), they raised quite a bit of moolah.

I do have to mention that at least twice she said to me, "You've been so nice to me, what is your name again?" :-)
I only minded a little, because it really doesn't matter to me at this point who my mom thinks I am, if I can make her smile, or if I can get her involved with something that she enjoys...

It was a precious day, full of memories, made so much better by the fact that my mom had such a "good" day....

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......

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 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....

Well, it's been a while, but Mom has another UTI. She's back to the delusions about being shot/hung/hunted and she is once again refusing to eat. They did a UA and the bacteria in the UTI is enterococcus faecium, which is a very resistant bacteria and different from the last one she had (although that one was VRE also).

We've been presented with some options, none of which are good. There is only one oral (pill) antibiotic that is effective on this bacteria, Zyvox(?)....anyhow....the problem with that one (aside from the fact that it is not covered by insurance and costs $100 PER PILL<--not a typo--at 2 pills per day for 14 days) is that my mom is on two antidepressants that can interact with the antibiotic and cause a very bad side effect, "seratonin syndrome". Even if they take her off the antidepressants for 3-4 weeks prior to starting the antibiotic, there is still a chance that the interaction could occur.

Or....there are 4 or 5 antibiotics that could be given intravenously that would probably be effective. The problem with that is that the NH has several times now informed me that they WILL NOT administer IV antibiotics at the NH, so Mom would have to go to the hospital, which could make any improvement caused by the antibiotics a moot point, because she always gets so confused in the hospital...and even if some of the "hospital confusion" cleared up when she made it back to the nursing home, some of the confusion ALWAYS remains as yet another cognitive step down...the nursing home has also expressed doubt about whether my mom would pull out the IV or not, because she wouldn't remember/understand what it is. Yesterday, I talked to the nurse practitioner (a new one who has only been working there a month) and she said that if I insisted, they could do the IV antibiotics at the nursing home, but....so I'm clear on the fact that the nursing home does not want want to do the IV, but not clear on whether I could actually force the issue or not. And with any antibiotic use comes the possibility of C. Diff., which is a very bad infection where the antibiotic(s) basically kill all of the "good" bacteria in the gut and cause life-threatening diarrhea.... also...not to mention that if we did the IV antibiotics, she might get another UTI next week again and we'd be in the exact same place, except potentially broker and wiser....at this point, since it has really not appeared to be an option, I'm not sure if Mom's insurance would cover the IV/antibiotics or whether it would be out of pocket.

Or...we could do "nothing" and just try to support her and see if she can fight it off for a while....I asked the NP (who I do not like) what kind of prognosis we would have if we chose this option and she said "well, if/when it moves into her kidneys....about 2 weeks..."

I need information. But I don't even know who to ask....

Also, though, I have to add, that the RN's and LPN's at the nursing home--they have been so amazing--I cannot believe the support and understanding I've been getting during this--two nurses even went to the director of nursing to plead for the chance to do the IV at the nursing home (and were told no)....they are very upset that there doesn't appear to be anything "doable" and one of the nurses teared up when she told me how upset she'd be if it was her mom in this situation....If my mom has to be in a NH, and even though the higher ups aren't on my list of favorite people, the folks on the front lines (the aides and nurses) could not possibly be more compassionate and caring....


I called my brother to get his thoughts and he said "I guess I need to get working on...." and I thought for sure he was going to say "coming up to visit more often".....but you know what he said?  "all the funeral arrangements..."!--guess I won't be getting a lot of support from him....but I was hoping....


I honestly don't know what to do.  If anything.  I strongly suspect that this will be the last Mother's Day that I share with my mom.

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 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.

Lately it just seems so hard....(pity party ahead!)

I must have "the winter blues" because suddenly everything feels hopeless, like no matter how hard I try, things keep getting worse, instead of improving.

I got my car back, and now (for DH's truck + my car) owe $3000 to my brother.  And that's really really embarrassing to me.  And I was very happy to drive my own car to work this morning, but now I keep imagining(?) that there are other things wrong--a funny noise here, a funny smell there...I'm probably just paranoid because the car seemed to respond better and use less gas than before....but....

And I really do have to make that appointment for Sarah (dog).  This morning when I went to let her out, she couldn't find the front door, even with me calling her over there.  And the accidents have been getting worse, if you can imagine that...but it's breaking my heart....

And my mom.  She may or may not be stable.  Everything she says now makes sense, but she keeps telling me she "doesn't feel good" but when I or the nurses try to figure out what's going on, she can't tell us.  Her bloodwork seems fine.  But she's sleeping nearly all day and back to not eating.

Winter.  Need I say more?  It's been relentless.  All it does is snow and when the snow mercifully stops, it's 20 below zero.  I fell the other day when I was bringing in firewood and that could have been really bad, because DH was at work....but luckily I was ok....I'm just so tired of clouds, snow and cold....

And I'm worried about money.  After DH driving his truck for nearly 2 weeks, I'm worried that I won't have enough money for gas to get to work next week.

It just feels like "one step forward, three steps back".  And I hope I "get over" this feeling soon.....spring would probably be a good cure...

Mom update

Well, it's 2011.  Officially.  I hope you all had a wonderful Christmas and a Happy New Year.

Me, well, DH had to work, so I took a bottle of non-alcoholic champagne to my mom's nursing home room and we chatted and drank the bottle of "champagne".  She really liked it, which made me feel good, because she needs all the fluids and calories that she can get.  At about 9pm we wished each other a Happy New Year, and I went home to bed.

I'm really sad about 2011.  When I stop to think, I realize that this will likely be the last time I drink "champagne" with my mom for New Year's.  That although I'm happy that she was well enough to do that, she's really not doing very well at all.  She seems to have "leveled out", though, with these super-antibiotics.  There's no more weirdness about getting shot or being hung, no more evil family members, etc....and our conversations, as simple as they are, tend to be based in the "here and now".  So that was an amazing Christmas present, for sure.  Of course, there's a tradeoff:  She's been having horrible diarrhea.  I suspect it's from the Macrobid (the antibiotic for the superbug UTI that she's been having) and I wasn't too terribly concerned until tonite, when I did a search for "Macrobid diarrhea" and found that it can actually be a "rare but life threatening" side effect, leading to a different type of infection.  Holy cow.  It's like Alzheimer's whack-a-mole :-(  Get rid of one problem and something potentially worse crops up.  I hope I'm wrong.  I hope it's just the sheer strength of the Macrobid that is causing the diarrhea.  The notes I read online said that if there is diarrhea, to stop treatment immediately.  I don't think anyone at the nursing home (or I) really thought it was any more of a big deal than regular diarrhea, where the patient could get dehydrated or lose certain electrolytes....and now that I know it could be a big deal, the Macrobid is all done.  She had the last dose yesterday.  So I guess now we just wait and see what happens.

I know what the end result will be.  And my tendency is to deny it and fight it tooth and nail.  But not much will probably be changed by me doing that, except that maybe I'll have fewer regrets down the line.

I'm also considering the possibility of contacting Hospice.  But even though I know that this is not a good situation, and Alzheimer's does not improve, I feel like if I bring in Hospice, I'll be a) jinxing things and b) giving up and I don't want to do either because I really need my mom.  And I know it's silly but I keep comparing her to some of the other late-stage Alzheimer's patients in the nursing home and saying "She's not that bad yet...." but I know that those patients probably aren't dealing with this UTI stuff, either.

My friend Brenda, who was DD's PCA (personal care attendant) when DD was living at home, lost both of her parents in a 6-month timespan, one to an aggressive cancer, and one to a stroke.  I know I'm "only" losing my mom, so I can't really draw a parallel to her pain, but sometimes I have a tough time deciding if losing a parent quickly like that would be worse than this "long goodbye" or not.

And to top things off, I think my brother is detaching himself from my mom.  I call him every night with an update, but he rarely comes to see her and when he does, it's for a very short time.....I'm kind of glad she's not remembering him so clearly these days (I think it's a case of "out of sight, out of mind") because then I don't have to answer so many questions about that....

The whole situation just crunches up my heart.

The saddest holiday I can remember....

Hi everyone...I'm so sorry to be sad during what is usually my favorite time of the year....and really, for the most part, things are looking up more than I had recently imagined that they could.

The thing is....I'm afraid I'll be losing my mom soon.  She now has a 3rd UTI and the bacteria culture shows that it is Vancomycin Resistant Enterococcus, or VRE, for short.  For you and I, even though it's a bacteria that's resistant to most antibiotics (but not all), it really doesn't affect us, because our immune system(s) can take care of it.  But in people with weak immune systems, it is very hard to get rid of.  The nurse practitioner at the nursing home says that she thinks that my mom may get better temporarily, but we will probably never be "rid" of this infection.  She is being treated with Macrobid, which is one of the very few antibiotics that have proven effective against this bug.

Sadly, despite the antibiotics, which were started four days ago, I am not seeing that she is "getting better" much.  Yesterday she seemed to be alert for about an hour.  Today I went to supper with her, and got her to eat a little bit, but then suddenly, she couldn't stay awake any more.  I left feeling so very down and heartbroken.  I haven't wanted to write this post, because I've been afraid on some level, that I might "jinx" things--even though I know I really couldn't, somehow, I'm still strangely superstitious.

Here is what I am seeing/thinking, and I am very much hoping that I am wrong, and willing to be wrong and admit it proudly....but.....

My mom is still not eating much.  She eats more when I am able to be at the meal with her and coax her to take a few bites.  Based on my "career" with trying to become a size 5, I can guesstimate that at the meals where I am present, she is only eating about 100 calories or so.  And I'm told that she "eats better" for me than for the aides.  Many times when I cannot be with her at mealtimes, she refuses to eat at all.  I'm a little confused about this because of the dementia.  I know that when someone "stops" eating, it's a clear sign that the end will be coming soon.  But with Alzheimer's, I'm not completely sure if she has stopped eating because of that reason, or if she has stopped because she doesn't feel the hunger, doesn't remember why it's important to eat....?  I don't know if it even matters....Even when I'm feeding her, she gets to a point where she absolutely won't eat another bite--I guess when the time comes where she is "done" eating before she even starts, then I'll have a clearer idea of what's really happening with that.

I suspect that I may not even have time to worry about that.  These nonstop UTIs have really been wearing her down.  The nurse practitioner says that my mom's immune system is fading and she is no longer able to fend off any of these infections.  So at this point, the eating/non-eating issue may be moot, because of the infection(s).  Especially this most recent one.  I thought my mom would at least "bounce back" a little when they started the Macrobid, but that hasn't been the case so far.

Yesterday, Christmas Day, was very sad for me, too.  I was really torn as to how to do things and I'm afraid I didn't do a very good job.  DD was allowed to come home for a visit.  And since she hadn't seen many of our extended family since she went to the treatment center, I thought it was important that she be able to attend our traditional "family" Christmas and know that she was still included in the family.  But what that meant, unfortunately, was that my mom would be absent from the get-together, because at the moment, she is not able to provide much assistance when it comes to getting her in and out of the car, or in and out of the wheelchair....and my brother's home has lots of stairs, even just to go inside.  So I made the decision that DD would attend the Christmas with DH and I, then we would rush home and I would spend supper with my mom.  And we will have a "special" Christmas celebration on Jan. 1, where my brother has promised to bring his two little boys, so "grandma" can see them opening presents.  I hope she is well enough at that point.  I'm a little worried that, if things keep going the way they have these last couple of days, she might be bedbound by then.  I am so much hoping and praying that is not the case.  But I have never gone through this with anyone before, so I don't really know what to expect other than from here on out, it's probably not going to be easy or fun.

I feel like I've been focusing so much energy on my mom lately, that I (once again) have been falling down in the other areas of my life--you all know I tend to do this, but I don't think my family realizes it yet.....when things are really really bad, I tend to not want to talk to anyone except maybe DH.  So I haven't been communicating with friends who've reached out to me, both from this blog and from my old job that I got laid off  from.....I haven't been living up to my own expectations of myself.   And that doesn't help me feel any better.



I'm sorry I'm so sad tonite.  But I knew I could tell you about it.

Mom: A rebound of sorts

My mom has had two "good" (or better anyhow) nights this week, where she ate supper and took her pills without any coaching from me. Yesterday she told me that she went to the exercise class that they have at the nursing home, and that they "throw the ball at her a few times". (They play a seniors version of volleyball with a big beach ball).

I try so hard not to get my hopes up, but what a Christmas present it would be if she stabilized again and was no longer (I’d even take a "most of the time") living in that world where people are shooting at her and she is worried about being hung or convinced that I am dead, etc….I know she’s not going to get "better" by most standards, but if she was not so scared, I think I could handle the rest of it better.

Another thing, though, because yesterday was such a "good" day for her, tonite’ll probably be worse again. It’s just a different kind of roller coaster than the bipolar is. I’m not ready to lose my mom but I don’t think anyone ever is "ready". I don’t know what’s worse—the thought of losing her, or watching her go through this torment.