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.....

"Your family has been selected...."

…to take part in our "Giving Tree" program for needy families."

That’s a weird feeling, when you get that call….I went through the gamut of emotions—my first thought was "We’re not needy, we’re just broke!" After all, even though I know I/we don’t make much money, we’re over the poverty level, and there’s food to eat and a house to live in….and all…..

Then I started wondering about who had nominated us for the program. They must know that we’re struggling, that I’m trying so hard, and that we could use a little boost. Who could it be, though? I don’t bring it up to people (except you)—I usually try hard to pretend that I’m just like everyone else (who has discretionary income and TV and doesn’t have to keep the thermostat at 58*) and if someone does comment about how frugal I am, I just tell them I’m a cheapskate. So who could know? I was touched, though, and while I thought about this, I felt like crying, because someone out there understood.

And then I started wondering if maybe I’m not hiding it as good as I thought I was, and maybe I look/act poorer than I think. That made me sad and made me feel kind of like a failure.

And then I started imagining what DD would get for Christmas without "help", and what she might get if I accept the "help" and there was no question about it. I’m accepting it, no matter what, but I still feel weird.

It’s a weird feeling, for sure.

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.

"That Mom"

Whoa.  You would not believe the stupidity in our house in the last month or so (or maybe you would, LOL).  To explain it properly, I need to remind you that some time ago it was discovered that our roof was leaking.  DH and I both knew that we had to find a way to get that fixed before winter.  Our house is divided into three parts.  The first part (including basement) was built in 1910.  That part actually burned down later, so the basement was built in 1910, and the house part on top of it was built in 1917.  An addition was added on in the 1940's to add a bathroom and laundry room (before that, the house did not have indoor plumbing).  Then in the 1970's, the "big part" of the house was added on, providing a living room and another bedroom.  It's the part that was added on in the '40s that needed roofing the most.  Since doing the entire house was not financially feasible at this time, I/we opted to just do the 1940's part, which is the part that was leaking the worst.

I had managed to save up $2000 to pay someone to get this done, as I knew that DH could not be depended on to be able to get it done and I (with my new job) (and serious lack of skills and knowledge) was not going to have time.  Then DH and I started talking about how maybe if we asked DH's brother to help, instead of hiring someone, we could keep some of that money and put it in savings.  The materials for the roof only cost $700, so we could potentially have some left over!  DH's brother is 35 years old and has never had a job--he has OCD and some other mental health issues (a word to the wise that I did not heed--be aware of the possibilities if close family members of your new love suffer from mental illness) but has done a lot of work on DH's mom's house and he typically (partially due to the OCD) does excellent, by-the-book work.  Our hope was that because it was family, we wouldn't have to pay him much (if anything) for helping, and we could put some money in savings.

So DH's brother agreed to come up, and DH's mom came along to "help".  I hope I've mentioned before that I love my mother in law, because I do.

Now at this point I need to back us up again, to where my mother in law bought me new tires when we couldn't afford them.  She (and her siblings) had sold some land and she had quite a bit of money at the time.  I was very grateful.

Unfortunately, she blew through that money like nobody's business (it only took her about a year of helping her kids and buying stupid stuff and fixing up her house...).  She is now broke and she is even less frugal than DH, if that is possible.  And I mean she is broke.  She cannot afford her medications right now (she's in the 'donut hole').  I've been sending her money here and there to try to help but that is making it even harder for me to pay our own bills.  I've given her a website where she can buy cheap (and safe) medications from overseas.  I've given her a Senior Helpline number that is to help people pay for their medications.  And I've urged her to go to the county and see what help she qualifies for and what programs they might know about that I don't.  She refuses to try any of these things.  She says she will, never does, then asks for more money.

So she and DH's brother show up at our house.  The very first thing that I find out is that DH's mom's tires are so bad that they are "undriveable".  So she drove five hours to our house on undriveable tires and has no money.  Why on earth would she not mention this before setting out?  A trip to the tire shop confirmed that all four tires were scary bad and undriveable and the tire shop guy (who we know to be honest) was too concerned about safety to agree to just selling two tires so.....

We (I) got stuck paying for four new tires for DH's mom's car so that when she went home, she would be safe.  Ok.  That's fair.  She bought me tires, right?  Her new tires cost $733 (she has a Toyota RAV4).  I'm sure you figured out that we didn't have that kind of money budgeted for anything except the roof.

Anyhow, two things happened with the roof that weren't anticipated wholly.  Ok, maybe three things.  First, it was discovered that that particular section of roof not only had two layers of shingles on it, but also, underneath the shingles, were cedar shakes.  That meant a LOT more tearing off of roofing than was anticipated.  The second thing was that DH did not help AT ALL.  NOT ONE BIT.  I think everyone was kind of surprised about that, kind of, but not shocked.  So now DH's brother is re-roofing with absolutely no help at all.  I had at least figured on DH to be able to hand his brother things.  Nope.  The third thing?  DH's brother--he does great work--but he works slower than frozen molasses in January.

So it wound up taking a lot longer than anticipated.  And DH's mom and brother were staying with us.  And every single day she would tell both DH and I that we HAD to put "that dog" to sleep (Sarah).  Finally, DH had to tell her to shut up, because we were both on the brink of saying something not-so-nice to her about it.  But that sort of thing is normal with DH's mom--she's very outspoken and opinionated and doesn't think before she speaks.  She used to tell us to "get rid" of DD, too.  So I wasn't too surprised by this.

I knew I was going to have to pay DH's brother something--it wouldn't be fair not to.  He was doing a LOT more work than I thought he would have to.  I told him that I'd be sending a check home with him but that he wouldn't be able to cash it right away.  He was fine with that and seemed a little surprised and happy that I planned to pay him something.

Anyhow, after they had been there for about two weeks (not a typo) (and yes, we were feeding them most of the time, too), the roof still wasn't done.  But we were going to get a big windstorm, so they decided to go home and come back when the weather was better.  Since I hate having company of any kind, I was fine with that!!!  I came up with $150 extra for gas, etc.  because I knew DH's mom didn't have much money and I was appreciative of their help.

Then they came back.  And everyone was getting frustrated by how slow DH's brother was working, but he was working steady and I knew it would be done right, so even when DH's mom would berate him about how slow things were going, I just kept telling him to not worry about that, because we were just grateful that he was "helping" (or doing all the work).  We were still feeding them (including buying food we wouldn't normally have on hand because DH's brother is a vegetarian), and by this time it was clear that we really hadn't saved ANY money by doing it this way.  In fact, we had gone significantly over budget.  But at least we were getting the work done by someone we trusted (rolling eyes).

Then DH's mom asked me how much we were going to pay his brother.  I (thinking things were normal) told her that I would probably send a check for a hundred dollars home with him and I was going to tell her that he couldn't cash it right away, but she interrupted and started yelling at the top of her lungs that THAT WASN'T ENOUGH.  HE WORKED EVERY DAY.  I CAN'T BELIEVE YOU ARE DOING THIS TO HIM.  I calmly told her that I was working as hard as I could and our budget was not healthy in the first place (I was very tempted to point out that we would have had a lot more money to pay people if we hadn't spent $700+ on tires etc., but I bit my tongue), but she just continued to yell at me.  I was shocked, as I had never seen her like this before.  I honestly don't think I did anything wrong except try not to overspend.  But maybe I did mess up.

Then she abruptly announced that they were leaving, and they did.  They left the roof unfinished.  I sent DH's brother home with two checks.  One for $75 (I figured if I was going to get yelled at anyhow, I might as well not break the bank and do the $100 I was planning on) and a blank check dated three weeks from now, that I planned on telling him the amount as soon as I got paid and knew how much we could afford.

Miracle of miracles, DH was able to finish the shingling.  Kind of.  The shingles are up, anyhow.  The edges still need to be trimmed and the vent isn't right, but the shingles are on, anyhow.  And I guess that's the best it's gonna get for now, because we're getting snow....

Anyhow, DH's mom called and apparently DH's brother is having to turn over his roofing pay to her because his mom is so broke.  So DH's mom wants to know how soon "he" can cash the check(s).  DH told her that I wrote the date(s) on the checks.  She got angry with him when he said he didn't think they could cash the checks early, because he said he had to ask me first.

Then last night, she called again.  In one breath she told DH that she is driving out to Montana (he asked her how and she said she'd find a way (I have no idea why)).  And then she asked if she could cash one of those checks yet.  When DH said he didn't think so, she got angry with him again and then started yelling at him about me.  She apparently told him that I treat the dogs better than I treat him, etc.

And yet she still won't go to the county.  Or try any of the other resources that I gave her.  She'd rather get mad when we don't have the money she wants (and it isn't even hers!).

I started to cry when I was talking with DH about it, and he told me that his mom was like this a long time ago, long before I ever met her.  "Then she got a job and started getting nice."  He wondered if maybe because she's so broke, that she had mental health meds that she wasn't taking (DH thinks his mom wouldn't tell if she was taking those kinds of meds).  He reminded me that I always tell him that "That Guy" is "angry, selfish, and impulsive".  Then he said "maybe this is "That Mom"".  Made me laugh.  But I'm thinking he might be on to something.....

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!

Somethings wrong with my mom.

I already knew, after talking with an aide, that my mom was having a rougher-than-usual night. But this was just a little more bizarre than I expected, especially since our conversation last night was about the weather, what she had for supper, the activities she had gone to, and how much she like the "helpers" there.

Mom: I’m so glad to see you!!!!

Me: I’m glad to see you, too!! How’s your day been?

Mom: Not good, I’m afraid. (starting to cry)

Me: What happened, what’s going on????

Mom: There’s something that I’ve never told you, something that nobody knows.

Me: What is that?

Mom: Well, I don’t know how to tell you this, but our entire family is black.

Me: All of us?

Mom: Yes, all of us. And our family that came over from Denmark, they’re black too. (In case you’ve not been certain of this just from reading the blog, we’re all Caucasian).

Me: How long have you known that?

Mom: I’ve known it for a long time. And then today, this woman, she said she was my aunt….she told me, too. She thinks she’s so pure!!!  She thnks she's not black, but she is!!!  Someone told me that she's at least fifty percent!

Me: Is she still here?

Mom: I think so. She had a gun. See these shoes?

Me: Yes, those are the shoes we bought together, from that special shoe store, so that your toe wouldn’t hurt.

Mom: No, they aren’t. SHE took those. She was shooting at my shoes.

Me: Wow, that must’ve been scary, huh?

Mom: (getting teary again) Yes, it was.

Me: Well, I’ll bet she’s gone now.

Mom: No, I think she’s here all the time.

Me: I know these ladies will take good care of you, though—if she comes back, they’ll call the police.

Mom: I don’t know about that….

Me: I heard they lock the doors at 11pm, so if she wants to come back she won’t be able to.

Mom: I don’t know, she’s pretty mean.

Mom: She told me she was going to take my pillows.

Mom: And then she told me that [my mom’s brother and sister in law] moved to Denmark and are never coming back.

Me: Well, if that’s the case, it’s a good thing you’ve got a phone to call them!

Mom: Well [my mom’s brother] said he was never going to talk to me again.

Me: When did he say that?

Mom: Well, he didn’t, but that one day he was here and didn’t even say hi. (referring to a day when there were musicians performing in the nursing home and my mom thought it was her brother/family and they didn’t say hi to her (because it wasn’t them)).

Me: Well, I’m so glad you’re in a safe place!

Mom: Have you talked to DH lately?

Me: Yeah, he’s at work.

Mom: I thought he wasn’t working.

Me: No, he’s still working. At the same place.

Mom: Do you think you’ll ever get back together with him?

Me: What do you mean?

Mom: You were having a lot of problems. And he left you.  And now you're all alone.

Me: No, he didn’t leave, everything’s ok.

Mom: But he did move out.

Me: No, everything’s fine.

Mom: Did I tell you about that aunt? She’s the meanest, most inconsiderate person I’ve ever met! She said I lie, and that I steal and that I’m as good as dirt.

Me: Well I know that’s not true….you know you don’t lie or steal and you’re not dirt, right?

Mom: But she said I was….

At this point I realized that me talking with her was actually getting her more riled up instead of calmed down, so I left, after instructing the aides and nurses to test her for a UTI. Natural progression? I have no clue. The other times when she has been like this, there has always been a big underlying problem—like a UTI (I hope).

You know, when you read about Alzheimer’s, you always hear about the memory loss/disorientation. There’s not so much about stuff like this, and it’s scary. It’s especially scary because it’s so hard to tell if there’s "something" going on, or if it’s just dementia talking—and is this just a "bad day" or is this a sign of how things will be in the future? (I suspect that, unless they find a UTI, this is a sign of what the future holds)….You don’t find out about the hallucinations, the inability to recognize pain, the extra-sensitivity to medicines, the fear and anxiety….

www.alz.org has helped me a lot. But after a night like this, I get so scared for my mom, and for the daughter (me) who’s losing her a little bit at a time…..