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.

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

Why on earth did it take me this long to do this????

I'm sure it has a lot to do with my denial of DH's mental illness.  Part of me is still hoping that he'll wake up one day and be "normal" again, just like he (pretty much) woke up one day and wasn't any more.  Intellectually, I know it's not realistic, but......I do the same thing with my mom, but that's another post.

When my mom lived in assisted living, for nearly two years I would go to her apartment on Sunday and set up her medications for her.  She had a purple pill container for her morning pills, and a blue container for her nighttime pills.  If a doctor prescribed a pill for noontime, we always had to request that it either be in the morning or at night, because my mom could only seem to remember those two pill times.  But it worked long past the time when she could no longer read anything, because she could differentiate between the colors of the pill containers.  Every Sunday I would religiously refill her pills for her.  It helped with keeping the prescriptions filled, too, as I was right on top of things.  I remember asking DH if he wanted me to do that for him, too (at the time he wasn't on as many medications as he is now), and he got offended and said "no, I'm an adult, I can do it myself."  And that was that.

I know he hasn't been taking his pills religiously.  And recently, since he's home more, I've asked him why he hasn't taken them at certain times.  Often his response is "I forgot to fill up my pill container."  or "I forgot to call in my refills."  And you're saying to yourself right about now, "Ok, Carol, this is obvious."

But it took me this long to do it.  I just didn't ask him.  I took over.  And once I did it, he didn't mind at all.  I had expected some kind of objection, but he didn't say anything about it.  And it feels good, because it's one less excuse he has to not take his pills.  I think he hasn't taken his full regimen for weeks.  I have an idea to track everything on paper, too, as sometimes his pdoc will make a change that isn't reflected on the prescription bottle and I don't always know/remember those.  Like "Your Depakote levels are a little high, let's drop down to three pills instead of four...." and if I can't remember what the right dose is, it's almost guaranteed that DH isn't going to remember either.  So my intention is to request that the pdoc's nurse write down what they have listed as what he should be taking, and that she write down any changes made at DH's appointments and send a written "change notice" home with DH, so we are on track.

So far, the results have been promising.  DH has been in a pretty good mood yesterday and today. (I started doing his meds last weekend).  At that time I observed that he had no Effexor (antidepressant) and could not remember if or when he had requested it to be refilled.  He hadn't taken it for at least 2 weeks.  Now, a week later, he is more cooperative, more friendly, less demanding, more appreciative.  It makes things so much more pleasant and comfortable for me.  I hope the improvement isn't just a fluke.

I wonder what other changes I could make that could improve things.  I'm amazed and embarrassed that it took me so long to do this one.  But better late than never, right?

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......

Contrition

DH is sorry about the 4-wheeler thing. He has used some words that I didn't expect him to use, like "ashamed" and "selfish". And he didn't even flinch when he found out that I have the 4-wheeler key now. We can't sell it yet, because after all this time, we still owe over $4,000 on it, and I don't think we could sell it for that much, especially in this kind of economy. And it's nice to have it to plow the driveway, I guess....although paying the neighbor to plow was a lot cheaper....so anyhow...it's parked, and both DH and DD lose out because they were both stupid.

I have to say that I really wasn't surprised by the entire 4-wheeler thing. Both DH and DD did pretty much what I would expect. I just keep hoping that DH will "buck up" and become a partner and not a childish adversary.....I told him this, when we were discussing the situation, and it seemed like he understood. The thing is, that next week, he'll have forgotten it all. And so it'll happen again. And again. I just need to convince myself that I AM a single parent, and although sometimes DH does the "right" thing, a lot of times, he doesn't, and I need to have a plan for that. It's easier said than done, for sure.

DD turns 17 in April. She wants to have a "party". Keeping in mind that she is emotionally about 10 or 11 at best, it would be more of a kids' party than a teenagers' party, which, I guess, makes it easier....but I don't want to. She's been such a brat this year, I really don't have any desire to do something super-fun for her (but I can't tell her that, of course, as I'm sure at least some of her brattiness is not under her control....but I'm dreading the whole thing. So I'm calling a "family meeting" this weekend so that we can all decide what the plan is. And I will just remind DD that the "party" can be cancelled, if she acts like a jerk.

Just what I needed. (right)

Well, yesterday was a good day. I visited my mom, and so did my brother. We sat in the "day room" of the unit, with three other patients. We chatted about the weather, and about the "fancy" whirlpool bathtub that they have there. My mom told us that "it was really fun!"

I was wearing one of my favorite old sweaters, it has three wolves embroidered on it. One of the gentleman patients asked me what was on my shirt. I said, "I think they're wolves." He said, "Wolves?" I said "yes, I think so." Then he started to howl like a wolf. I was worried that my mom might think he was crying or something, and be upset, so I said to her, "He's howling like a wolf." So then my mom started howling. Then the lady across the room started howling too. I haven't laughed so hard in a million years--what a "pack" of wolves!!!! And the patients all laughed, too. And one of the nurses (and I did too) had tears, she was laughing so hard....it was great. I went home with a big smile on my face, thinking that things were getting better.

But this morning, I guess, "Thor's girl friend" showed up, and my mom apparently became very disruptive. The nurses were very surprised because up until now all they've seen is a sweet little old lady with a bad memory. Anyhow, when I visited today, it was obvious that she wasn't as cheerful as she was yesterday, she was much more anxious. I didn't really know what to make of it, I do know that the nurses were going to call the on-call psychiatrist to see if anything needed to be changed.

Then, when I called tonite, the nurse on duty told me that my mom has a "low-grade fever". "But she has a UTI, so it could be part of that." I didn't know she had ANOTHER UTI. But I guess she does. So I don't know if I should worry about this or be relieved that there still might be something that they can possibly fix that will help her....I don't know!!!!

And then, to top things off. You aren't going to believe this (ok, you probably will)....please don't put me down for being who I am.....I was driving home from visiting my mom and I decided to drive past our house and go into town and clean out my car a little bit at the gas station. I got about half way from our house to town (it's 4 miles to town) and I saw this obviously elderly dog, standing in the middle of the highway, running up to every car that went by. It was very sad. But I thought to myself, "I can't stop. He must belong to someone. We just got down to five dogs, and as much as I really miss Kirby, even five dogs is still way too many." And I kept on going. I went into town and did my thing, then turned around and went home. The dog was still there, still in the middle of the highway, looking very lost. There were no houses around. I saw images in my brain of this dog lying dead on the side of the road, and I knew I had to do something. So I pulled over and called him over to me. He wasn't sure if I could be trusted, but he finally came to me, but he wouldn't get in my car. So I called DH and he brought a leash. Another lady stopped and tried to help. But the dog would only come to me.

So eventually I was able to get the leash on him--he didn't have a collar or anything, and then he hopped right into my car. We drove around, knocking on doors, trying to find his home. He didn't look like a starving stray, he looked well-cared-for. But nobody knew him. I'm now wondering/speculating that possibly he was "dumped" on the highway. I don't want to think that, though. I want to think he was chasing a squirrel and got too far from home.

He's at our house right now. We haven't introduced him to anyone really, yet, I want to find his owners so bad.....I really very much don't want another dog, but I also don't want him to die....I wish there were more resources for stray animals in my area. We called the sheriff, and the radio station. The radio station will be announcing him tomorrow afternoon. Hopefully someone will claim him. It's been just a little more stress worrying about where to put him, since we don't know if he's cat-friendly, or if he has fleas or anything....got to keep him separate for now, anyhow....sometimes I'm proud of my "stray magnet" thing--the way strays and I seem to find each other....but right now I'm really really wishing that I was a "normal" person, at least in that sense. From the time I first saw the dog, probably a hundred people swerved to go past him. But I'm the sucker who couldn't just drive by.

Craziness. Pure and simple. And oh, the guilt....

My mom. Last time I posted, I was telling you about her cat's girlfriend, who "went out and got pregnant by someone else." Well, when the aides went to give my mom her medications, my mom started yelling that she "wasn't taking anything from her, that tramp, I want her out of here!!!!!!!!" And nobody could get her to calm down until the aide left. They tried a few hours later, with a different aide, and she (the aide) was also "a tramp, hurting Thor like that, get out of my house!" Very alarming.

So after weighing all the options, and realizing there really weren't a lot of options any more, I decided that we should go to the geriatric psychiatric hospital about an hour away from our town. My brother agreed, and so I brought my mom there yesterday afternoon. I know that even if all the other weirdness gets cleared up, she'll probably still lose ground there, but things just couldn't go on the way they were--they were really, unfortunately, only getting worse.

So my mom was admitted and so far has not had too much confusion there. But it could be just too early for that. Today I visited her, and she seemed about the same, with a little more sadness thrown in. She's still very upset with "the girlfriend", I guess, and I guess the aides in the hospital ran up against the same thing as the assisted living aides did ("get out, you tramp!"). I forgot to ask how they eventually got her to take her meds.

They also told me that she needs a lot of "cueing". In other words, they have to instruct her on everything. They can't just help her to the bathroom and say "I'll wait outside. Just give me a holler when you're done." They have to tell her each step of the process (I won't share the process with you, I'm sure you know what to do) as if she has never been in a bathroom before. That's kind of what was going on at home, too. And the assisted living just isn't equipped for that kind of constant care. So DH and I were doing it, in hopes that things would improve, but they weren't. So basically, unless the psychiatrist(s) figure out what the problem is, she probably won't be able to stay in her apartment.

When I think about that, part of me is relieved. She needs so much, and it would be so nice to know that she was having all of her needs met in a safe place. But also, you hear so many bad things about nursing homes, etc., and when she was in the nursing home in June, it was "adequate" and the staff were caring, but I felt like if I wasn't there, a lot of things wouldn't get done or would get done incorrectly. I need to visit some more facilities, I know I do. But I had planned on doing that last week, and when it came down to it, I got a HUGE case of "head-in-the-sand-itis". I didn't want to think about my mom needing to move to a nursing home. So if I didn't think about it, well, you know....it wouldn't happen, right? (I know how stupid that is/was, and I recognized it that day, but I just couldn't bring myself to go and do that. Now I think I'll need to get on the ball.

I know I just need to be patient, too. She has only been there about 24 hours now, and that certainly isn't enough time to effect changes, so I really just need to trust them and hope for the best.

Tomorrow's the big day

Sorry I haven't been writing too much lately, sometimes I want so much to tell you all everything that's been going on, but it makes me so sad that I hate bringing it to the front of my brain long enough to type it--does that make sense?

Tomorrow's my mom's Dr. appointment. I'm trying to list all of my concerns so that I don't forget anything. And I've got to remember to not tell my mom that there's an appointment tomorrow, I'm hoping that will keep her from getting worked up about it. I've got so many questions--I hope that maybe they can do another test for a UTI and find something that's easier to fix than what I'm thinking it all is.

And I've decided to call Public Health. I'll make the call tomorrow when I've got some time off. I had requested some materials about a memory care facility in our region, and they also included a brochure on how Public Health might be able to help...it sounded like it had potential, so I figured I'd give it a shot.

There've still been some crazy things happening. At least twice this week my mom got into her nightgown in the middle of the day and went to bed, telling the staff that it was time for bed. Then another time this week, a "helper" came into the apartment to walk her down to supper, and my mom was standing in the corner in her dining room...just standing in the corner. The "helper" asked her what she was doing, and she said that she "was waiting in line to use the bathroom."

And I just remembered something. Drat. Last night, DH told me that my mom thought all the people on the TV were her friends and had come over to her apartment. That's really not all that shocking, because it wasn't too long ago that she thought the "church" on the radio was really in her apartment. But I just remembered: I just got off the phone with her, and I told her that DH would be coming to stay with her tonite. She asked me "Is he the only one?" And I said, "Yup, just DH". Now I'm thinking that that comment was related to "all the people" who "came over" last night. I hope nobody turns on her TV....and I hope DH calls me before he goes over there.

I'm kind of scared of what the Dr. might say. But kind of prepared for it, I guess....I hope so much that they can find a reason for this drastic change. I hate thinking about it....but it's all that I think about.....

I think DH is trying hard to do "what needs to be done", but I think he is having a tough time with this, too. And although he's known my mom for many years, she's not his mom....and I'm worried that having DH staying over there so much will affect his own mental health. That would be all I need--all three of them unstable :-( yikes

Question for the day:

Is it better to consider having Mom placed in a nursing home 4 miles away from my house, that has relatively few services specific to dementia, but does have some familiar faces (of both employees and residents who used to live in the same assisted living where my mom lives now)...

Or is it better for her to be 45 minutes to an hour away from my house, in a place that has more specialized services for people with dementia, and more activities, etc.?

It's a tough call.

Right now I'm leaning towards keeping her close to me--I can stop by every day, give her a hug, etc....

But then I go back to--I don't have much time every day. So often she might end up just sitting there, doing nothing. Where in a dementia-specific place, there would be more activities that she could partake in, and a different atmosphere....?

I'm struggling

Well, DD is home, she came home on Sunday. I have to say that although I thought she was somewhat contrite, her attitude still sucks and I am still having a tough time coming to terms with this whole situation. The hospital recommended "family therapy" with a therapist that does not know me, DH, or DD, but in our rural area, there are only two therapists qualified for this type of therapy, and both are booked out to the end of November. So really, I guess, back to the same old thing.

And my mom. She seemed to be getting better, then yesterday she started to be more confused again. She didn't know who my brother was, didn't know where the bathroom was, told my brother she'd been "up walking around the apartment for hours", although she told him that she had just come back from supper....and it was more of the same today...so I spent the day at the clinic again, hoping that her UTI was back, because that is/was fixable. But nope. They couldn't find anything wrong. They checked her urine, a chest Xray, bloodwork, and an EKG and all came up normal. So what do I think?

I finally, for the very first time, allowed myself to think about the fact that it's probably time for her to move to a nursing home. There's no way she could live at my house, with DD so unstable and the house is only a 2 bedroom....and I work all the time....the nursing home is going to be the only choice. And if there is no medical reason for what we're seeing, well, she can't keep living where she's at. I keep trying to comfort myself by thinking that "if she's confused like this, chances are that the nursing home won't be that big of a change for her", but I'm wrong on that, I know that even if she can't verbalize it, it's not home and is going to suck. When I think about it, I get really really scared. And kind of relieved, too. And panicky. And sad. And guilty. And relieved.

We're going to try to wait a week and see what happens. She has a Dr. appt on Nov. 6, so we'll see what he has to say. I know we're very lucky that my mom has lived where she does for such a long time....the staff are so fond of her, and they don't want her to leave either, so they'll do whatever they can to keep her there....so I think that even if this next week is tough on them, they'll wait to see what the Dr. says....maybe he can change a med and make a difference....I sure hope so....

It's just getting to be too much. I don't have time to recuperate between crises any more. I'm so emotional, and I'm turning into this frustrated angry person I don't like very much. I think I'm starting to accept the fact that unless things stabilize soon, the options are limited.

I hate this. It's so much harder than the books make it out to be. I never imagined.

P.S. DH got his rejection letter from Social Security for his disability claim.

Today's Dr. Appt.

Well, today the doctor was even more concerned about my mom's state of mind, and he saw/heard firsthand the whimpering noise she's been making....the assisted living people sent lots of information about what's been going on, too, so that was good.

My mom did not sleep all night, apparently. I need to remember not to tell her ahead of time about appointments, I guess. I've heard that other children of Alzheimer's parents need to do this, too. It feels deceptive, though. Spring it on her at the last minute, you know? But I guess the whole disease becomes a deception--where I don't argue with her when she tells me the entire church was in her apartment, I just tell her I'll tell them not to come back....etc....I guess in the name of harmony, there's no way to escape the deception.

Anyhow, the doctor decided we are going to try my mom on Paxil for the anxiety and the depression. He is going to wean her off of the Xanax because long term use in the elderly can increase confusion(!). He is going to put her back on Seroquel only at bedtime, too, to help her be less anxious at night.

It all made sense to me. Whether my mom's body will cooperate, that's a different story--I'll keep you posted!

My mom just called.

Time=10:45pm

Me: Hello?

Mom: Hi, it's past 10:30.

Me: (not understanding right away) Yes, it is.

Mom: Well you're still at work. You told me the doctor appointment was at 10:30. I got all dressed and I've been sitting here waiting for you and you're still at work.

Me: Oh Mom, I think you got kind of mixed up. It's 10:45 at NIGHT. The appointment is in the morning. Why don't you put your jammies on and go back to bed?

Mom: (in a venomous tone) I DON'T HAVE JAMMIES!

Me: Ok, Mom, why don't you put your nightgown on, then, and try to get some sleep?

Mom: I DON'T WANT TO PUT THAT ON AGAIN TONIGHT.

Me: Well it's perfectly fine if you sleep in what you've got on, then you'll be all ready to go when you get up.

Mom: Are you sure it's not time to go?

Me: You'll be waiting a long, long, time.

Mom: Well I don't want to miss that appointment.

Me: Well, that appointment is pretty important, so you'll want to get some sleep so that you can tell the doctor what's been going on. (Mostly I'll be doing the telling, but I don't think she realizes that). If you stay up all night, you won't be thinking very clearly and you won't know what to say to the doctor.

Mom: Well, if you say so, I guess I'll try....

Me: Promise me you're going to go back to bed?

Mom: (long pause) I don't know if I can.

Me: Remember you're going to have to talk to the doctor....

Mom: I guess I could try.....(not sounding sure of herself at all)

Me: Ok, you go to bed and I'll see you in the morning.

I know that the "helpers" check on her at midnight. Hopefully they can get her back to bed if she doesn't go for me. Sucks. Because I can't very well send DH over to check on her, and I can't call her because if she did go to bed, I'll wake her up. Just gotta trust those helpers...

This weekend....the Alzheimer's roller coaster!

My mom has been relatively stable since she got back to her assisted living apartment. She isn't the same as she was before this last episode, of course. She does a lot more sitting around, doing absolutely nothing than she used to. I started to notice that she was kind of depressed. "Hey Mom, wanna go to the casino Monday?" (that's her very most favorite thing in the world) "Oh, all right, if that's what you want." "Hey Mom, wanna go shop at the dollar store?" (another favorite) "No, not today, I don't think"...so when we went to the Dr. this past week, I mentioned that. And he prescribed Celexa, an antidepressant.

He also discontinued her Vicodin, which they had put her on when she was in the nursing home. At that time she was so incoherent, they wondered if maybe she was having pain that she couldn't articulate, so they put her on Vicodin. Then, when the Xanax proved to be the drug that helped, I talked to the nurse practitioner about stopping the Vicodin, and she did not want to do it. Me, I thought, "She did not complain of pain before. This drug did not improve her cognitive condition. So what do we need it for?" The nurse practitioner informed me that she still MIGHT have some pain, so they thought she should stay on it for a "while". What do I know? I went along with it. On Friday she finally had her first follow-up appointment with a doctor since she got out of the nursing home (in our small town the good doctors are booked up for months in advance....) and the Dr. agreed that there was no real reason to keep Mom on the Vicodin. So he stopped it. Ok!

Now she's more depressed than ever. She didn't even want to go to McDonalds today "because you would be embarrassed to be seen with me. I stink." I talked her into going, and she did perk up. She was talking and laughing with DD and making comments about the weather....but when we got her home, she told me she had to use the bathroom. "Where is the bathroom again?" Uh-oh.

But I had to go to work. So I pointed her in the direction of the bathroom, and she said, "Oh! Now I remember!", so I thought it was ok. I went home to get DD home and to get ready for work. At 8:45 (I had to be to work by 9pm), my brother called. (DH is actually at my brother's house, having a "guy" night.) Apparently when my brother called my mom, she couldn't remember how to hang up the phone. She had to use her "beeper" to page an aide to help her. So on my way to work, I checked on her again, and she looked very anxious, but she told me she was ok. But she was making these little whimpering sounds, like a little kid who was lost and didn't know what to do. I went and talked to an aide and nobody is sure what is going on. I'm thinking that it's one of the med changes, but I don't know which one. Either the antidepressant messed her up, or the Vicodin withdrawals are causing this. I'm afraid to take her to the hospital (because if she is admitted, it will be another huge cognitive drop), but I told the aide that if my mom has a rough night, I'll get her in to the clinic in the morning to be checked for a bladder infection.

And now I'm feeling guilty for wanting the antidepressant for her, but it's so not like her to be depressed, I didn't know what else to do! It's like that Whack-a-Mole game--you try to fix one problem and two new ones pop up.

I hope this is just a "bump" in the road....

My mom--a Thank God update.

The last few days have brought very hopeful changes to my mom's status. She has started to be completely aware of what is going on, although she is still paranoid ("The people in the hall get together and talk about how they don't want to help me.", but she is now remembering what she had for supper, she's going to activities, and holding a conversation with me. Yayyy!!!!

But that's not all.

First: a case of really bad timing.
On Tuesday, when I brought DD to her psychiatrist, I mentioned that some of the tantrums and other behaviors we have been seeing might be due to the situation with my mom. I explained to the psychiatrist what was happening, and she handed me a brochure. Seems that the town 20 miles away recently acquired a geriatric psychiatrist, as well as a geriatric behavioral unit at their hospital--I called them as soon as I got home, as I was thinking that I could get Mom in to talk to the pdoc and we can really start figuring things out and trying to prevent this from happening in the future. It turns out, though, that the pdoc believes that in order to understand the complex subtleties of a person's dementia, he needs to have them observed (in the behavioral unit) for probably 10-14 days. Which is probably a really good thing. It sounds like they are extremely thorough and very attuned.
But for my mom, who has just started to recover from this past month, I don't think it's a good idea. I just can't think about putting her in another "new" environment right now. I sure wish that I had known about this place and this doctor a month ago, though, things might be a whole lot different right now. But all is not lost, because I will now be aware of that resource if I/we need to go that route again.

And now, the very best news of the week.....
They saw enough improvement in my mom to merit bringing her down to her apartment to see how she would be able to manage. She was able to do all the physical things--get up from a chair, lay down in bed, get out of bed, walk to the dining hall, etc. But she couldn't remember where anything was in her apartment. She couldn't recognize the kitchen when she was standing in it. But, based on earlier this year, I kind of expected this. I wasn't sure, though, what it meant.

But then today, we got the word. The nurses from the assisted living apartments did some kind of test on my mom to see if they could meet her needs in assisted living, and THEY COULD!!!!! MY MOM IS GOING BACK TO HER APARTMENT!!!!!!!!! CAN YOU BELIEVE IT??????? Thanks everyone so much for your prayers, they must've helped!!!!

She'll be going back sometime next week, I believe. And I and DH will have to be there with her until she's acclimated again....but that's nothing compared to what I thought we were going to go through.....oh, breathe, Carol, breathe....miracle? Probably....

MMES score: 14

Hi everyone, it's been a very chaotic time in my life, I'm very sorry I haven't let you know more about what is (or isn't) going on.

My mom is about the same. Very agitated and confused. She knows my name in some sense, but she frequently doesn't connect it with me. The other morning, I guess, before I got to the nursing home, she was very agitated and all she would say was my name--"Carol (my maiden name)!" over and over again. When I did get there, every worker asked me if that was my name.

Most of the time she doesn't recognize me when I first get there. But after we spend some time together, she seems to be more comfortable and have a clearer idea of why I'm there. She remember's DH, and my brother and asks constantly where they are. The other night she asked me "Where's DH?" I told her he was home cutting the grass (yay!) and she said, "That's impossible. The grass wouldn't take that long."

Sometime she just repeats "there's something very, very wrong..." over and over. And she is often suspicious of the staff--this morning she called the nurses' aide "dangerous", although I've been there every single day, and have never seen that aide exhibit anything other than love and respect for my mom.

She won't eat unless I am there. I've been getting her to drink Ensure shakes, to make sure she gets enough calories, but honestly, I am having such a hard time dealing with this....I always thought I would kind of see this coming, you know? Like maybe she would have an "episode" and then be ok for a few weeks, then have more, until I knew that this was the "new normal". I didn't expect to have her wanting to go out to eat after a doctor's appointment one day, and then a week later not even know who I am. It's so shocking and scary.

A huge part of me still is not accepting this. It just doesn't happen like this in the books....even the Alzheimer's web sites don't lead me to think this is normal. So I really want to believe it's not normal. I want to drag my mom, somehow, down to the hospital and insist on more tests, more treatments...have them check her stomach, her heart...but in the state she's in right now, the intellectual part of my brain knows that even if they found something, unless they could fix it with a pill, she probably wouldn't make it through any kind of treatment.

Yesterday they administered the mini mental status exam, which is a common way of determining the skills that an Alzheimer's patient has. She scored 14 out of 28 (Usually the test is 30 points, but 2 questions they didn't do, because I told them that she never knew her address or phone number when she moved to the assisted living--there was really never a need and it just seemed like a lot of work to help her remember something when I was doing all the driving anyhow) Anyhow, when she was in the hospital/nursing home in February/March, she scored a 19. So this is a very significant decline. I asked them if they could re-administer it in a couple of weeks just in case. They said they could. I'm not sure if there will be a change, but I just have such a hard time accepting this still.

Today I went to the nursing home to make sure my mom ate breakfast. She says things that make sense, and I don't know what is real. She says she is too hot. Then she says she is too cold. But she is in the same room and nothing has changed. I don't know if she's really cold or hot, or just feeling something else that she can't express? I gave her some chocolate pudding and she got really angry with me, yelling "THIS ISN'T CHOCOLATE, WHY ARE YOU DOING THIS TO ME???" I felt terrible. She was angry because I wanted her to eat. She was angry because she was hot and cold and wanted her sweater on, then off, then she had to go to the bathroom, then about 30 seconds after she got out (with the help of an aide), she "had to go" again, so we called the aide again. I tried to ask her to wait, but she said she had to go right now. Then, when she got done with breakfast, we went back to her room and she wanted to take a nap, but I tried to explain that almost all the aides were down helping with breakfast, so it was going to be a few minutes before someone was going to come, and she got angry again. I found myself getting pretty frustrated, so I gave myself a "time out" and left. I'll go back for supper.

It must be even more frustrating and scary for her to be in this dark land where people do things you don't understand, and you don't remember from one minute to the next what your body needs or wants....every time I really think about how she must be feeling about all this, I just get all shaky and want to cry. I hate thinking that she is afraid. And the worst thing, and the thing that is hardest, is that there is nothing at all that I can say that reassures her. Sometimes I lie just to calm her down. Talk about guilt. "Yes, I talked to Uncle Frank last night, he'll be calling you later this week." "Yes, I checked on your cat three times today." "I just saw an aide coming down the hall. She'll be here any minute." Lying to my mom. I did it when I was a teenager. But now I'm doing it again.

I took a week of vacation this week, so I don't have as much computer access as I usually do. But I have so much I want to write. I'll try to get to the library tomorrow to tell you more. Thanks everyone, for all your thoughts and prayers, I'm so grateful.

My mom....nursing home.....

Well, my mom was discharged from the hospital yesterday. All the tests came up negative, so they figured she was ready to go to "rehab". Only the nursing home folks came by and determined that my mom was too confused for "rehab", so last night she moved into a long term care bed at the nursing home. Could be temporary. Supposedly, anyhow.

Yesterday she told me that someone came to her hospital room and told her that my DH had passed away. I told her it was probably just a bad dream, because I knew that my DH was fine. She just worried and worried about it, and wouldn't stop worrying about it, until I had DH go to the hospital to show her that he was fine.

So then, she decided that she had heard wrong, and that it was probably my brother that had died. But then she talked to him on the phone. We had about a dozen more conversations about how dreams can seem real, but it was probably just a bad dream, and then I went home for a few minutes. When I got back, she was upset because it must have been her brother who died. I thought we had it covered, but she just wouldn't let it go.

Then, at the nursing home, she started in again. Only the nursing home didn't know what was going on, so they helped her call me once, and then they called me to get her brother's number. I told them that he would probably expect my mom to be rational and we should not call him right now. So they said they would just reassure her. Then, DH went to visit her, and she told him he was dead. All of this is just so crazy, you can't talk to her at all, she's so wound up over whatever it is that she's worrying about at the time....I haven't been sleeping well, because I am so worried. But I had to get back to work, I can't use all my vacation time right now, because I might need it more later. But I sure want to.

In the meantime, DH has been going to visit her, which is nice, and he only turns into "That Guy" once in a while...but nothing at all is getting done at home, and I wish either I had time to do it, or that he or DD would actually lift a finger :-(
Well, maybe with my mom at the nursing home now, there'll be a little more time to get things done. I hope so!

Not my mom.

At the hospital, there is this person, she looks a lot like my mom. She has my mom's voice. But suddenly, she is not my mom. My mom is very easy going. This lady is getting upset about every little thing. My mom is trusting and appreciative. This imposter is accusing the nurses of trying to poison her. This strange, sad, person, can't remember from one minute to the next, what I just said.

One small week ago, my mom knew what my work schedule was. She knew what town I was going to be working in, and what night I stayed in the City. This person does not know if it is day or night. This person doesn't understand that the phone in the hospital doesn't work like her phone at home.

One small week ago, my mom could hold a conversation with me about the weather, was I busy at work? ....what she had for supper....now she is just repeating and fidgeting....

On Monday night, my mom (or this imposter) had to be sedated, because she was causing a ruckus in the hospital. The hospital did a bunch of additional tests, in case she was in pain and wasn't able to communicate that. All the tests came back normal. They took Xrays. Normal. And her sodium is just about back to normal. But my mom is not normal. I just reviewed the stages of Alzheimer's (available on www.alz.org) and it appears that my mom may have just jumped off the cliff, from "Stage 5 with a teensy bit of Stage 6 once in a while", to "smack dab right in to Stage 6". There are only 7 stages.

I'm terrified. I'm not ready for this. I'm just not. I am praying that this is a situation that she can improve from, at least a little...it's got to be.

Clarification

From a couple of the comments on my last post, I felt like I needed to clarify things regarding the youth "ministry" group in our town. I don't know them personally. These kids are not from my town, they COME to our town in order to become a part of this "ministry". I do know that they have all been in trouble with the law and that the ministry was started "to give them a chance to turn their lives over to God." I do believe very strongly in forgiveness and in second chances... and I think that most of these kids are just doing the best they can....

And if DD was a "normal" teen, I'd feel a lot less trepidation about them. But she has FASD, and that makes her very impulsive, with little cause/effect judgment, about as mature as a 10 year old, and she also wants desperately to have friends and fit in. My fear regarding the "ministry" kids is really less about them than it is about DD.

Even if every single kid in that group has changed his/her life, I have no doubt that they have had experiences that I would not like DD to have.

A 16 year old with "normal" judgment could filter out the bad, and dwell on the good. But DD is not like that. If she thinks another kid is "cool", she is going to want to be just like them. If they joke or reminisce about their past(s), she is going to want to be "like them".

And, the very real possibility exists that a number of those kids are not doing this because they want to give their lives to God, they are doing it to get out of going to juvie. DD could and would very easily be misled. Since, as a parent, it is my job to keep her safe, I think that keeping her out of situations like that is my responsibility (and DH's too, if he can do it).

And for those of you who asked, here is why DD did not get a consequence that day:

She does not truly understand DH's illness or that he is sick at all. Since her maturity level is still around 10 year old, everything is "all about her" and she does not have a very good ability to recognize another person's situation/problems.

And on that night, she wouldn't have known that DH was not "with it" that night, all she knew, really, was that "Sometimes Dad says no, but sometimes if I ask him again, he might say yes." So that's what she did. Any kid would do that.

I think the first night, the one that DH didn't remember, where DD lied about her plans, called for a consequence. And the consequence was that she not be able to hand out with her friend that night. (DD lies almost all the time, so a bigger punishment (piled on top of the consequence for tomorrow's lies, and the next day's, etc....) might end up causing consequences to stretch into next year!)

But this time, the only thing DD really did was ask. DH was the one who didn't remember the previous time.

I keep telling myself: She's 16. She's not doing drugs. She's not pregnant. She's not in trouble with the law (yet). So she's doing better than a lot of teens. But part of that is a result of being proactive and knowing how she operates.

Memory problems in my non-Alzheimer's family member

Prologue:
There is a "ministry" group in our town. It is made up of teens who have been in trouble with the law and have decided to turn their life around as Christians. I think that's wonderful. But no matter what is in their heart, they make me very nervous. And many parents in our town.

Last week:
DD asked DH if she could go to a "church program" in the library basement. Supposedly her friend's church. I was at work (as usual) but DH was doing pretty good on the parenting stuff, and, after a few questions, it came out that the meeting wasn't actually AT the library, it was in the park across from the library, and it was with this "ministry" group, not a church. After a call to DD's friend's parents, we learned that they felt the same way about that group, and no, their daughter goes to the Baptist church in town. So DH knew something was up, and said no way. I thought that was a good call. DD is very impressionable and needs to be around people who are GOOD influences.

Tonite:
I was at work (again) and called the house. No answer. I called DH's cell phone. "I'm at (DD's friend)'s house, waiting for them to get done at that concert."

Me: WHAT???? I thought we talked about that last week.

DH: We did?

Me: Yes, there was a "meeting" in the library that turned out to be in the park, supposedly a church group, but it was this "ministry" and DD lied about it....and we decided that it was an absolute "no way"??????

DH: That sounds familiar....

Me: What is going on?

DH: I don't remember all that from last week.

Me: You don't remember how DD lied about her friend going to that "church" for years and years????

DH: Well I kind of remember about that....

Me: I thought we decided that she wasn't going to be allowed to do that!

DH: Well, um...I....

Me: I'm not mad, I'm confused and worried.

DH: I'll call you after I get DD in bed.


Next thing:
Earlier this week, I bought some little tomato plants for the garden, and some rhubarb. I told DH that the rhubarb needed to go in a spot by itself, because it comes back every year and if we put it in the garden and dig up the garden, then the rhubarb will not do well. I told him this twice.

Then yesterday, he came in and told me that he'd put all the plants in the garden, and I asked, "And you put the rhubarb in a spot by itself, right?" No.

He didn't even remember me telling him anything about the rhubarb. Or to save some of the dirt to start some seeds with, either.

I don't even know who to be mad at. He doesn't remember. And he clearly isn't on the "good parent" bus this week, either. Everything is so unpredictable. I just wish I knew what to expect from one minute to another. I think when he goes back tohis PDOC, I am going to bring up the memory problems. It's scary sometimes.

He thinks he remembers just fine, until he doesn't.

Our trip to McDonald's

Today I had to go to the bank (which is an hour away), so I asked my mom if she wanted to ride along--of course she did!! I guess I was kind of mean, because it was DH's birthday, and he wanted to go too, but I knew his only reason for wanting to go was to go out to eat (because he knew my mom would want to) and I wanted some quality time with my mom, so I said no and that I'd take him someplace when I got home. He wasn't too happy, but I made him a cheesecake earlier, gave him a card, and a $20 gift card for the store in town....so it's not like I totally forgot about him...or maybe I was a jerk. Mostly I'm not caring lately. More on that later, I guess...

But my mom was having a really good day, memory-wise....when I got to her apartment, she already had her shoes on and also her hoodie (although it wasn't zipped--she lost the ability to zip things a couple of years ago), all ready to go. She told me "I've already gone to the bathroom, too!" I was thrilled. Usually when we are going someplace, I have to plan on about 1/2 hr to 45 mins to get ready. We usually get the shoes on, then a jacket, don't forget the sunglasses, and then she needs to go to the bathroom....this was quite momentous!! I don't think she's been that "ready to go" in at least a year.

Then I started to get a little worried, because it seems like the exceptionally good days are followed by exceptionally bad days, but what can I do about that? I decided to just take the day as a blessing.

There is a small town nearby, where, to the angst of the citizens, a strip bar has opened up. And my mom NEVER forgets it. "Is that the town with the strip bar?" But what she said today just cracked me up, and it was further evidence of her having a "good" day.....

Mom: Is that the town with the strip bar?

Me: Yes, I think it is.

Mom: Do you think they're still in business?

Me: Well, I don't know much about it, but I haven't seen anything in the paper that they closed.

Mom: (as we drive through the small town, where the strip bar is at least 6 blocks away, on the other side of town from the highway)
I don't see any strippers.

Me: Well, they probably stay in the strip bar.

Mom: Well they should have some of them come out and show us what they do.

Me: (trying not to laugh) I'm not sure the police would like that.

Mom: Well they should!

I am laughing at the memory of this conversation. My mom is and was a very old-fashioned lady, very modest. I cannot believe we had this conversation!!!

Anyhow, we proceeded on our way and stopped at McDonald's, which is my mom's absolutely favorite place to eat. She had a double cheeseburger, medium fries and a hot mocha drink and she ate it all, with gusto!!! And then she said that she wished there was a McDonald's in her assisted living facility because that place (her assisted living place) doesn't know how to make a hamburger.

I love my mom so much.

Tomorrow's Mother's day. As I said, I'm going to her place and making "brunch". She did not forget that, either. She asked me "what time are you going to be by to cook for me?" I couldn't believe that she remembered that I was going to do that....it was a very good day!