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.

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

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......

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.....

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.

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.

Disability--an option I thought was "done for"....

DH got a letter from his disability attorney(s) stating that his court date is Feb. 22.  I made him call the attorney because they were not aware that he was working.  When DH told them about his job, they did not seem concerned.  They asked him how many hours he works and "It's part-time, right?" (of course).  Then they asked him if he thought that his psychiatrist would sign a paper stating that DH cannot work full time.  (Of course he will, because all this time the psychiatrist has been telling DH that he should not be working at all, not even part time [but me getting laid off last year made him feel like he needed to work and I am glad most of the time]).

The thing is, I have never heard of anyone getting disability and working....?  I guess I knew that he could work a day or two, but I didn't know that he might still qualify for something--don't worry, my hopes aren't up....I'm not convinced that DH gave them all the right information.  But I've been thinking about it anyhow....wouldn't that be nice??!!

My mom seems to be mentally a little more stable.  There's currently no "weirdness", and we can talk about the weather and what she had for supper, etc...so in that sense, things have "stabilized".  However, she's still not eating much and yesterday she "didn't feel good" to the point where she slept ALL day and the aides couldn't get her to wake up to take her pills or change into her nightgown.  When I visited, I couldn't get her to wake up either.  The nurses were concerned about this and also that my mom has been emitting a "foul" odor, kind of like really bad diarrhea, but she is clean and things seem to be functioning in that department.  I've never heard of that before, either, so I'm worrying about what's going on inside her.

And to make things even more uplifting where my mom is concerned, well, in the last year or so, when I've been visiting every day, I've gotten to know a lot of the residents.  And over the weekend this past weekend, two long-time residents passed away, and that made me sad.  I know it's a part of life but I'm sad for their families and missing them (the residents) myself.  Sometimes I wonder, because I'm so very fond of some of the residents there, if/when something happens to my mom, whether I would keep going back to visit....and my answer changes every day. 

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.

Tonite sucked and I'm hurt and scared.

My mom's strange stories keep coming.  There have been strange stories before, but never like this--these are new since the UTI. They're always "bad" stories--like "those three little girls, they were taken away, never to be seen again, and they didn't even remember their mother's name" or "I need to keep my head down because they've been shooting at me all day." Or..."I've heard them talking in the hallway and I'm to be hanged in the morning. I killed 600 people, you know"....you get the idea....this sort of talk has only been "the norm" in the past, when there has been a UTI or other health problem. Prior to the original UTI, there were NO stories like this, and although my mom had little to no short term memory, she know me, could talk about the weather, and tell me what she'd had for supper, so she was as rooted in the present moment as she could be.

I have been visiting my mom at the NH every night after work for a very long time. Yesterday DH and DD (who had a pass for the day from the treatment center where she's been staying) and I had Thanksgiving dinner at the NH with my mom. My mom ate a few bites of everything, but didn't eat too well. In fact, she could barely stay awake, but she did try--I think she knew it was a Holiday....When I went back later, I heard that the aides were very happy that my mom not only ate a little Thanksgiving dinner, but also ate a little of the regular supper, too--they're all worried that she hasn't been eating much.

Today at 10:30am I got a call that my mom was refusing her medications and did I think she would take them for me...? I went to the NH and got my mom to take her pills, then I stayed to help her eat her lunch. She ate: 1 green bean, 1 spoonful of mashed potatoes, one spoonful of hot-dish, 1 90-calorie container of yogurt, and a chocolate chip cookie. She drank a cup of juice, a cup of coffee, and a tiny glass of milk. So that wasn't so bad...

Then when I went back after supper, they told me that she had refused to eat anything at all for supper (again). I had brought a cheeseburger from Hardees (fast food was her favorite up until the UTI hit) and had to beg and plead to get her to eat three bites. Then I tried a chocolate Ensure-type shake, which has worked in the past...and she refused to try that, too. Since we had talked earlier about how important it is to eat so that her body doesn't get sick, I reminded her of this and she said "CAN'T YOU SEE I'VE BEEN SHOT? THEY'VE BEEN SHOOTING AT ME ALL DAY AND NOW I'M SHOT AND YOU WANT ME TO EAT!" I quickly put the food away and just told her that I love her and don't want her to feel bad. And she said "NO YOU DON'T, I DON'T KNOW WHY YOU KEEP SAYING THAT." I said "because I'm your daughter, and I come to see you every day and I love you!" and she said "OH I KNOW YOU COME EVERY DAY. I USED TO THINK YOU LOVED ME BUT NOW I KNOW HOW SELFISH YOU REALLY ARE. I DON'T KNOW WHY YOU KEEP COMING HERE."

I was so shocked and hurt. She's never said anything like that to me before, even when she didn't know who I was, she always at least liked me....I completely didn't know how to respond and felt myself getting angry because of my hurt feelings, so I left.

I'm so scared and worried. I don't know what to do or think....and I feel bad that I left, because intellectually, I know she didn't mean it, but it still hurt....this is all such a drastic change for my mom, and the not eating--even at her absolute worst health crisis I could get her to eat....

I'm scared that this could be signifying that the end is closer than I ever thought....and I'm not anywhere near ready.....

My mom has another (?) UTI

I've been spending more time than usual at the nursing home.  Two days ago, her wild and unbelievable stories changed from "unbelievable but making sense" to "rambling sentences that are not understandable".  I was alarmed, to say the least, and requested that they check to see if the UTI was really gone or not.  The results came back positive for another UTI, so she's back on antibiotics.  The day before yesterday, she refused all food and water and slept ALL day.  The aides said it was difficult to wake her up, and I found that to be true.  Then yesterday, she woke up, was mostly back to talking about how she was going to be hanged for killing 600 people.  I never thought I'd ever be happy to hear that, LOL!

The catch is, that she's very combative again.  She's convinced that "they" are trying to poison her and she won't eat or drink for them, or take her pills.  Luckily when I was there, I was able to get her to drink a little "Ensure-type" shake and take her pills, but she wouldn't do it for the aides and got so angry she hit a nurse(!).  She also wouldn't let them put on her nightgown and I was not able to help with that, she got angry with me, too.

So I don't know what to think.  Is this the beginning of the end?  Because I'm not ready.  I hope that today after work, she'll be better and I'll know that I/we've got more time left.  My mom's the only person I've ever known with Alzheimer's--I don't know how this works :-(

My mom: The weirdness continues....

My mom is supposedly done with her course of antibiotics for the UTI.  However, she's still saying weird things.  They've done extra lab work and nothing showed up.  But her ideas are still way out there.  Last night she was focused on her brother and sister in law who "had said they were coming tonite".  I knew they wouldn't come up, though, without contacting me to make sure it was a good time to visit.  So I tried to convince my mom that they were probably going to come some other night, and she then became convinced that she had heard a crash and (believing that it was a car crash) started to panic because she thought they'd been killed.

I read her a story and that seemed to calm her down a little, but I just wish I knew (once again) if this is "natural progression" or if there's something "fixable" going on--it's so hard to sit there and have a "conversation" with someone when they keep talking about things like they killed 14 people and so the police came and took her shoes, etc.....

Every time this happens, I freak out.  I wonder how close we are to the end, and part of me wants this to get over with, because it's so hard to stand by and not be able to help....and watch your mom going away little by little....... and part of me is absolutely terrified of losing my mom.

And I feel guilty because I don't have more time to spend with her.  I'm there every day, but the visits aren't very long, and I know we both wish they were.

I love my mom and, as I read through my blog, I recognize that this confusion has happened a number of times before, and there has always been a recovery of sorts....So really, if the past is any indicator, the odds are in favor of my "normal" mom coming back soon.  But I will be worrying until then.

My mom has a UTI.

I’m a little upset here and I don’t know how upset I really should be. At 6am yesterday I called the nursing home to find out how my mom did overnight. "Oh, she slept really well…" "Still waiting on the UA results, though" Ok.

Then at 4pm I called again, and was told that they still didn’t have the results, but that my mom ate lunch and went to her exercise class, so they thought she was ok.

At 7pm, I got to the nursing home, and my mom was crying and telling me about how her two sisters (she actually has only ever had one, and that one passed on a long time ago) were trying to kill her and knocked her out because they don’t want her to be prettier than them. One of the sisters was hiding and waiting to kill me, DH and a host of other family members. She told me that one of the "helpers" had to call the police and they took the sister away and locked her up and now she won’t ever get out.

I went to talk to the nurse, who told me that although she hadn’t sat down to talk with my mom, she "seemed fine". I repeated what my mom was saying and all of a sudden she got alarmed and went to find the nurse practitioner, who, amazingly, was still at work (at 8pm!) The NP (who knows me and likes me (and my mom)) went with me to talk with my mom and got the same story about the sisters…..and she was alarmed. So she ordered the nurse to call the hospital asap to get the test results.

Sure enough, it’s a UTI. The NP wrote orders up, so they were going to start treating it right away. Thank goodness. Although UTI’s in elderly folks can be deadly sometimes, they’re still mostly curable. That’s a relief.

I’m concerned, though, about the times I was told that she is/was "fine" or "seems ok". I know nurses and aides in nursing homes are way overworked and don’t have nearly enough time to spend with the patients, but it seems to me (and I’m trying hard to just see this from "any person"’s standpoint and not the standpoint of "my mom is sick") that if a patient was noticeably confused on Tuesday, that on Wednesday everyone should be alerted to that and keep an eye out to see what’s going on. But again, this is the only nursing home experience I’ve ever had, so I just don’t know if I’m being unreasonable. I know that staff changes frequently and people call in/trade shifts at the last minute….but it seems to me like there might need to be better communication.

Also, though, I don’t want to "rock the boat" and become a pain-in-the-you-know-what to the aides and nurses—I like them all and I know that they like my mom, too, and I don’t want even the most subtle of retaliation(s).

Anyhow….I’m still deciding who I’m going to ask about that…and I’m glad I was able to be there and advocate for my mom—if I hadn’t been there, she might’ve had to wait an entire extra day for treatment (because medicines are delivered at night).

If you have had any similar nursing home experiences, please share--it might help me know how upset I can justifiably be.

Cross your fingers that the problem resolves itself quickly!

I'm doing better....

I knew it wouldn't stay like that for long...and Sarah (Woowoo dog) seems a little peppier, too--she even chewed a little on a rawhide, which made me smile....I'm thinking she's totally blind, though, because she keeps falling off the side of the wheelchair ramp on the deck :-(

DH had a rough night at work, and I'm feeling kind of bad that I wasn't very tolerant of his drama (it really wasn't as bad as he was making things out to be).  But then he did call me back and tell me that he knew he was being dramatic(!) and that was shocking!

Sunday, after I get off work at 8am, we have a family reunion and I have to bring my mom (and pick her up at noon).  I wasn't planning on telling her about it, because I think it's going to be extremely difficult for her and for me to pull this off, but my brother asked her if she was going, so then I was kind of stuck. Argh. He's not the one who has to do all this on no sleep!  Of course my mom wants to go.  And she is remembering it.  So there's really no getting out of it, and I probably shouldn't even be thinking that way, since I don't know how many more family reunions she'll get to go to....

Just rambling today, I guess....

My day sucked. (warning--not for squeamish)

Actually it wasn't too bad up until about 7pm.

First, a little background:
I met yesterday with the Nurse Practitioner who prescribes medications at the nursing home where my mom is.  Everyone seems to agree that my mom has been sleeping a lot more than she was when she first arrived there, and nobody is sure whether it is a "natural progression" or a medication thing.  The NP and I agreed that my mom's Seroquel dose would be reduced--the NP felt that the dose was high enough to be dangerous anyhow--and they were going to add a new laxative, too, since my mom seems to have lost the ability to recognize when she has to have a bm, and how to push (sorry if that's TMI).  I thought this sounded reasonable.

Also yesterday, DD called me and said she "had a question".  I suspected that she wanted something unreasonable and didn't return her call (bad mom).

Cut to today: DD called again, "with a question".  She wanted to know if she could apply for an all day pass so that she could spend the day with her bio mom!(?)  I told her that it had nothing to do with her, but I was going to be pressed for time that day and there really wouldn't be time for that.  Then I asked her if she had asked the therapist/staff where she is staying if an all day pass to be with bio mom would be allowed (I suspected it wouldn't, because the therapist won't even allow unsupervised phone contact with bio mom right now).  Sure enough....it hadn't been discussed.  So I, assuming that she was "getting better", said "I don't think that they would go for that right now.  Even if there was time to do that, I'm thinking that they would probably say that's not a good idea."

DD: But Mom.....she said she was going to take me to get my hair done!!!!

Me (to myself): I wonder how that's going to happen, since DD is an hour away from her, and bio mom doesn't have a car or a license...???  It certainly hadn't been discussed with us....

Me (to DD): You know, DD, your mom has very little control over things like that right now.  She has even less control now than she did when you were at our house, and that wasn't much.  I'm not sure it's realistic to think that she can just decide to do that, and it's probably not a good idea to get your hopes up for stuff like that.....

DD:  YOU ALWAYS ARE AGAINST ME SEEING HER!!!  YOU ARE ALWAYS AGAINST HER!!! WHY DO YOU ALWAYS SAY NO WHEN I WANT SOMETHING LIKE THAT?????

Me: DD, I don't want to argue with you.  I will talk with you about this some other time.  I love you.  Goodbye. 

And I hung up.  I just didn't have the patience for the crap.  But that decision (to hang up on her) left me feeling like a "bad mom".

Then I went to visit my mom.  Unfortunately, she'd had a lot of extra confusion today.  She was wandering in the hallways (not normal), and thinking that I was going to take her back to her apartment to stay....she said something was wrong, but she didn't know what.  She was already wearing a nightgown when I arrived at 6:45pm--that's only a little unusual--some aides like to get them dressed for bed early--I happened to look down under her wheelchair, and saw a little brown on the floor.  Sure enough, diarrhea--a lot of it--and my mom hadn't realized at all.  Apparently it had overflowed her Depends and, well....you know....

So I called an aide and she started to get my mom cleaned up.  I am very willing to acknowledge that that is the part of the job (nursing assistant/aide) that I could not do.  I walked down the hall while the aide did her thing(s).  When I went back into the room, the smell was so bad--it smelled like a combination of vomit and diarrhea, and was so awful I thought I was going to be sick.  My mom seemed a little more comfortable, but still confused.  I had to leave for work and hated to do that, but at a group home, it's next to impossible to call in at the last minute--and if I just up and say "I'm not coming in tonite", then the person who worked before me has to stay until SOMEONE shows up to relieve them.  So I went in.

So it's looking like both of the med changes were probably bad ideas.  I wanted to call the NP up right then and there and say "Ok, lets go back to how things were..." but of course she wasn't working at that time of night....and I know that 12 hours isn't really enough time to honestly evaluate a med change anyhow....I should've just requested that things stay the same med-wise.  At least then, when my mom was awake, she was more tuned in.....

I felt like a total failure.  As a mom and as a daughter.  Intellectually I know that's not the case, but emotionally I'm a basket case tonite.  I've been on the brink of tears all night.  Five years ago, when I felt like this, I would've called my mom to talk.  Nobody to call now.  My heart is breaking.

I've been busy and busier....

I really wish there was some way I could transpose my thoughts (not all of them of course) directly to this blog without actually typing--I've been thinking about so many things I need to share with you all and I just haven't seemed to have time to actually follow through :-(

I'm not sure that any of this will be in any semblance of order, so if something seems chronologically out of whack, it's probably because I'm just spewing thoughts....

Anyhow.....I got a "new to me" car--to replace my little red Corolla that didn't make it through the deer encounter....I'm not sure if I told you or not, that the insurance company only gave me about $4000 for my car--it was a 2004, but it had 275,000 miles on it (from that darned long commute to the job that no longer exists), so they took about $3000 off for that high mileage.

So DH and I went car shopping.  Several times.  And I learned that it's really really hard to find used Toyotas.  And it's even harder to find used Toyotas that cost less than $5000.  Apparently, people tend to drive them until they drop, or until they hit deer.  So I went online and found a total of about three Corollas within a hundred miles that were in the right price range AND 2003 or newer.  It became obvious that I was going to have to "settle".  DH and I went to a nearby "big town" and went to pretty much every car lot there.  We test drove a couple of older Toyotas and a 2005 Kia Rio.  I liked it (the Kia), but I hadn't done any research on how reliable it is/was, so decided to stick to the Toyota plan until further notice.  It sounds like I made the right call there, based on what I could find online.

The next day, after finding a used car dealer that advertised several used (but older--sigh) Toyotas online, we drove to that place, about 120 miles away from home.  And drove about 10 Toyotas, from a 1991 to a 2002.  A lot of them were really junky.  Especially the "really old" ones.  But we wound up buying a baby blue 1997 Toyota Camry XLE, which is the top-of-the-line Camry.  Fully loaded, leather seats, power sunroof, etc.  Everything works except the dash light for the tachometer.  Rides like a limo.  The mechanic (who we didn't know but figured was better than nothing) we brought it to (on short notice) said he didn't see any obvious reasons why we shouldn't buy it.  So we/I did.  It's a lot bigger than my Corolla, which means that it'll get a lot worse gas mileage (and the 6 cylinder engine isn't going to help either) but I really want/need the reliability (hopefully) of a Toyota, because I'd rather spend a little extra consistently on gas than have huge unexpected repair bills every time I turn around.....anyhow, if you picture this car in baby blue, that's exactly what it looks like (I'd have taken a picture of the actual car, but it's dark out and I don't want to wait!)

I'm still really scared that it's gonna break down any minute.  The inside is so clean, I can't believe anyone ever drove it....and it's by far the most luxurious car I've ever owned.  I actually test drove it three times to make sure I wasn't being swayed by the luxury.  But compared to the other Toyotas I drove, even the 2002, it seemed a lot less worn (I hope!).  I'm glad that's over with.

One of the main reasons I haven't posted this past week is that we've been working on clearing out my mom's assisted living apartment.  It's been a lot more emotional than I anticipated.  Every time I've been over there I've ended up sobbing--even DH, who's "a man who's not supposed to cry" (according to him) broke down when he saw that they had taken her name off of the door.  I know it's been really hard on him, too.  But he's trying to be strong for me.  He's really been a help, although he's been somewhat stubborn about his ideas--one night he wanted to start moving furniture at 9:30pm, and when I said that we should wait until morning, he argued with me and sulked for the rest of the night...but he got up in the morning and moved furniture and it all worked out....anyhow....I'm not sure if we were supposed to have everything out today (7/31) or if it matters, but there are still a few boxes in the apartment and I still need to vacuum the floor and clean the oven...so I'm hoping nobody will care if I finish up on Sunday....it'll feel good to be done with that, too--then I can concentrate on just visiting with my mom.

And my mom's cat.  He's at our house right now, in DD's bedroom, because he's about 16 years old and I was worried that he might not adjust well to a house full of animals....he's been doing ok, I guess, eating and drinking....but.....today I decided to bring him to visit my mom in the nursing home, and I noticed that his meow had changed.  In my experience that is never a good thing.  I observed (and I may have mentioned this before) that his belly is very very large, but you can feel his bones.  It doesn't appear that he's jaundiced (which would explain the large belly [ascites

DD is still having a tough time at her residential treatment facility.  She's had to be physically restrained twice this past week, and she had a big tantrum in the therapist's office when the therapist informed her that due to her behavior, she would not be allowed to go off grounds with DH and I to shop or go out to eat.  And then there are her bio relatives, who, in the 9 years that DD has lived with us, despite our continued urging, have never called her to go out for ice cream, never called her to say hi, never called us to ask how she's doing....now that they've learned that DD is in this new setting, are demanding to visit her there, and accusing us of "keeping her from them".  Argh.  I need to keep biting my tongue.  The therapist says DD is too unstable at the moment to have visits from bio family members.  So I've been telling them to call the therapist.  But it's still stressful!

So that's pretty much what I remember about what's been going on this past week or two--oh--and I have a job interview on Aug. 9.  Oh--and did I tell you (probably not) that I found out that because my job went overseas I could go to school for whatever I want (as long as it's in demand) including a Masters degree if I wanted to and they would continue to pay me unemployment for the entire time I was in school????  I'm kind of leaning towards getting some sort of computer certification that would result in a better job (hopefully).  If DH keeps working (and I know that's a big "if"), it would be doable.  So if I were to take something that required one year of schooling at a local Vo-Tech, and if DH could hold out for a year or so, then when I got done with school, even if DH couldn't keep working, I could go back to making similar money to what I was making at my corporate job before I got laid off.  Some things to think about, for sure!

DD and my mom

DD, from what I've heard, has been having a tough time at the residential treatment center.  I guess she's been picking fights with other kids over stupid stuff, and the other night, when staff tried to intervene, she picked up a fork and attacked the staff with it--they had to physically restrain her :-(  Her "discharge" is supposed to be on Thursday (has it really been 30 days already???) and she is very much looking forward to it.  However, the therapist at the RTC has said that she is so out of control that she really needs more treatment (they're thinking like 6-9 months).  DD has no idea, and it's going to be a "mother" of all tantrums when she finds out.  I am not planning on being the one to tell her.  I'd rather not even be within 10 miles of her when she finds out.  She called last night and sounded better than she has in a long time.  But I thought that the night before the fork incident, too.


My mom is adjusting surprisingly well to the nursing home.  We have decided to keep telling her she's in "rehab", because I'm afraid if she thinks she's never getting out of there, she might lose her will to live.  Sometimes I'm not sure she even realizes that she's in a different place--she sleeps a lot and some of the activities are the same in the nursing home as they were in the assisted living......She still tells me I need to get her out of there.  I just agree with her and tell her I'll get her out as soon as I can :-(  She tells me she is "doing much better now".  And she is.  But I think that's because she's getting so much more help there.   It's shocking, really, she's now incontinent, and sometimes doesn't recognize me, even when I tell her my name :-(  I keep wondering if I was in so much denial that I just didn't see how bad she was, or if it was a sudden "step" down for her....?  I've been trying to do more research on Alzheimer's so that I know what to expect.  Based on what I've learned, my mom appears to be in the "late" stages of the disease.  Every time she takes a step down I grieve for the mom I've lost this time.  Sometimes I feel so guilty, because I just wish it would be over with.  But I love my mom so much--I can't stand this "death by a thousand cuts".

We are keeping my mom's cat in DD's bedroom by itself.  I'm so afraid he isn't going to fit in to the "general population".  I guess as long as DD isn't using the room, he can.  I know he's lonesome, though.  But he's eating and drinking, and asking for attention when I come in to check on him.....so I guess, all in all, so far anyhow, the transition for both the cat and for my mom has gone smoother than I would have expected.

Transitions

It's going to be a month of changes and adjustments, for sure.

We had the 2-week meeting (halfway through DD's assessment period) at the treatment center where she is right now, and it sounds like she is acting out more than she was at home. I'm not really surprised, because she has more interaction with kids her age there, and that is one of the problems she has (getting along with peers). Anyhow, based on their preliminary observations (and these have not been made final yet, but they sound pretty authoritative), they are recommending a longer-term period of residential treatment (6-9 months). That would pretty much bring her up to where she turns 18. Part of me was hoping that she wouldn't come home until she was stable, but I think there is/was part of me that didn't want to hear this, either.

On the one side, I'm glad I don't have to deal with the "crap"--the defiance, the tantrums, the violence--I'm glad it'll be someone else. But I'm sad for her, sad that she's (in some sense anyhow) losing the most permanent home she's ever had, sad that we couldn't do more for her, wishing things in our family had been a little different....and I think I'm still kind of grieving the fact that she will not be living independently "when she grows up". Sigh.

Oh. And as soon as they learned that DD is "there", a bunch of bio relatives (like her bio grandma, and bio aunts) (who could have made important impressions on DD had they ever, even one time, taken up our invitation to give her a call, take her out for lunch, etc.) now have decided that after 9 years of only seeing her on Christmas and a couple of other bio family get-togethers, they want to contact her. I'm not making any friends on that side of town, however, because I think right now is not the time for them to be cultivating relationships with her (maybe that's wrong, but in all the time she was with us, they never cared at all), so they are not on the "ok to contact" list for DD at this time. And that kind of tears me up, too. I don't know what the right thing to do is, but I think I need to talk to her therapist(s) and see if they feel that the sudden interest in DD will be beneficial to her or just plain confusing.

And my mom, of course. It's been decided that she probably won't be able to return to the assisted living apartment. I'm so sad about that. We haven't told her yet, and hopefully won't. Right now she's in "rehab" (where she gets physical therapy etc., in hopes of getting her strengths and abilities back to where they were prior to this episode), and we are going to have her moved next week into the long-term section of the building. But we are going to continue to refer to it as "rehab", because I'm deathly afraid that if we tell her she isn't going back to her apartment, it will break her heart and she will lose her will to live. We're going to hang on to the apartment for an extra month, in case something amazing happens and she can go back there. I've looked at rooms, and had to decide if we would/could spend $600 extra per month so that she can have a private room. Yikes, that's a huge amount of money, as is everything related to a nursing home. But the only roommate available at the time was a lady in end-stage dementia, who basically lays in bed all day, hooked up to some kind of machine, does not walk, talk, or move much. I worried that my mom would know that lady wasn't there for "rehab", and not only that, it would be pretty depressing, so we are going to move her into the private room, and then in a month or two, when a more suitable roommate is available, we'll go that route. She's got enough money to last about a year and a half (if we only do the private room for a couple of months). After that, we'll have to consider Medical Assistance.

And her cat. Her elderly cat. He's got kidney failure, but has an amazing personality and seems pretty healthy for a 16(?) year old cat. My mom will miss him so!!! I guess, since nobody else wants him, he'll come to stay at our house. And I'm worried about that, too, because he is declawed and elderly and has been an "only" cat for so long. My cats are not declawed, although I do trim their nails every week or two...I'm worried that he might not fit in, he might get picked on....it might not be a happy place for him--in fact, I'm 95% sure that it won't be a very good home for him. But what else can I do? I can't justify to myself having him put to sleep--he's got no real reason(s) for that yet. He's active, playful, friendly, uses the litter box well, I just can't put him down. So it'll have to be a slow and cautious transition.

There's so much going on. So many moves, so many changes. I'm relieved and worried and grieving and hopeful and hopeless....I'm a mess.