JAB and all the rest of you wonderful people: I can finally post, since Mama went to bed early tonight.

As noted back at the first of June, the move itself was horrendous. Mama had a complete meltdown, while we were still in Utah (the wandering along I-15 incident), along the way (ups and downs that were unpredictable and super-fast, from I-hate-you moments to you-are-so-sweet, with little in between), and the first few days in California.

It came to a head when she packed her bags at the hotel in Encinitas and threatened to sleep in the walkway or in the car, because she was mad at me and some imaginary person for watching TV. I had to call 9-1-1 because I simply could not get through to her.

Luckily, the nice State Trooper had experience in his family with dementia, and knew how to handle Mama. His "therapeutic lies" convinced her to sleep inside our hotel room. She was still mad at me and the imaginary person, so she slept in the bathtub.

Next day, my friend in San Diego came over and helped me get Mama to E.R. That friend also let me stay at her house while Mama was in the gero-psych unit at Pomerado Hospital in Poway.

I believe I’ve written all of the above from my friend’s computer. Now to catch up.

Mama badly flunked the psych test. She scored 9. Nine. Didn’t know year (1974), could not do 100 – 7 (63), and so on. She also vented her delusions at the person who administered the test, about my wanting to steal her money and car, and all that stuff. While I was sorry she did so poorly on the test, I was also happy that she did poorly for someone official, not merely with me.

She voluntarily allowed herself to be admitted to Pomerado. The gero-psych person in E.R. was shocked.

The people (and facilities) there were fantastic. They treated Mama and all the other patients with loads of respect. The only thing that bothered me: Dementia has so many different faces, that the fifteen or so patients there had wildly differing needs. One woman was aggressive and scary. Another woman had dementia with depression. One of the few men seemed pretty much all right, just out of it at times.

The nurses seemed to enjoy Mama. Although the diagnosis is severe dementia with psychosis, Mama functions highly on a social level. She comforted other patients, took a liking to several of them, and generally was the social butterfly of gero-psych the week she was there.

The social worker in the unit told me candidly that the doctors and nurses did not know what to make of Mama. She asked for a toothbrush, which surprised them, as they are not used to getting patients who know much about hygiene. But the toothbrush was the kind that automatically dispenses toothpaste. Mama never, ever could figure that out, although they explained it to her three or four times. She was annoyed that they refused to give her toothpaste.

Similarly, they could not believe that she liked to dress properly – nightgown in her room, shorts and a nice shirt for meals. Again, not typical for most patients with severe dementia. But she never could remember where her clothes were if she put them away. The nurses had to show her the drawer. So she solved the problem by stacking them on the floor next to the bed.

They did get her pretty much stabilized with Aricept and Zyprexa. I act as her dispensary, so she doesn’t either forget and take nothing, or forget and overdose.

So the entire month of June was much, much, much (there are not enough muches in the world) better than January through May! I have to wonder how she would be doing now if the doctors in Utah had listened for half a second, and done something to help her.

Did I mention in my earlier posts that the Pomerado doctors and nurses even treated her edema in her feet and CURED IT, and that they found that the sores on her feet were frostbite? She must have gone barefoot outdoors in Utah when I wasn’t looking. Why couldn’t the TWO doctors in Utah have caught something like that? And the Pomerado staff also took her embarrassment at liver spots seriously, treating them with medicated creams that have all but gotten rid of them. That simple gesture of taking care of medical (albeit cosmetic), non-mental issues went a long way towards helping her mental state.

The biggest problem I have now: When she is on the meds, she “feels” independent and strong and all right, and occasionally wants to take over her finances again, or similar. (At least here in Los Angeles, she has stopped wanting to drive. Heh.) And sometimes that feeling of independence makes her believe she does not need the meds.

My battles are therefore far from over. She also wants to live alone in her own apartment. I am trying to figure out a way to make that financially possible, perhaps in an ALF. One thing has not changed: I do NOT want her to have a kitchen. Way too dangerous for herself.

I’m loving life in California. Burbank is a great place to live. Seriously. The city itself (not county, state, or federal agencies) provides unbelievable services to its seniors, including but not limited to three – count ‘em, three! – “adult centers” (they don’t call them adult daycare), free cleaning and grocery services for homebound or limited mobility seniors, free transportation. And so on. The adult centers in Burbank even provide free eldercare attorneys and free assistance with Medi-Cal applications, where they handle the paperwork on your behalf.

I also stumbled across an agency here called Engaged Aging. It looks like they subsidize retirement centers, and additionally provide free onsite classes and activities for residents. As noted above, I am holding off on adult daycare stuff until we are in a permanent location. Since Engaged Aging has twelve locations in metropolitan Los Angeles, I’m waiting to follow up on that lead until I can check out an actual place. But their Web site (http://www.engagedaging.org/index.html) looks interesting. If anyone knows anything about them, pro or con, please let me know!

I don’t post as often here these days, because of privacy issues. We are sharing a small furnished studio apartment. It would embarrass her beyond belief if she knew I were writing in this forum. She doesn’t comprehend what this awful disease has done to her… and how it affects me.

I say that, but every now and again, it’s like she has a moment of clarity and understands what she has lost and what is happening to her mind. Those times are almost harder than normal days, because the clarity makes her terribly sad.

She still has major issues with impulse control (the Zyprexa doesn’t handle that), where she HAS to have something NOW, even if she won’t want it two hours later. Yesterday she had one of her sad moments when she said, “Why am I that way? Why can’t I wait for things any more?” How do you answer that?

But at least, at least things are better. Hugs to all of you who have kept me (and Mama) in your thoughts and prayers!

Dear Denise-Elaine,

I had just logged off, but your post caught my eye and I just had to click.... I started following you, but lost you somewhere. It was good to read this update tonight. I want to remind you of something you posted awhile back.... I haven't messed around with quoting things here, so I am doing it my way, the way I know works! Here is what you said -

"I had one of those days too. You know in your brain that it's the disease talking, but emotionally, it's sooo hard to handle. Like you, I want my mom back! But that's impossible.

Please, please take care of yourself first (and remind me of the same - and anyone else who is in your boat).

This disease sucks. End of story. And it's all right to cry!!!!

It sounds like things are falling into place, that you are taking care of yourself, but just thought I would remind you incase you needed it!

{{{{ hugs }}}}

Serendipity

quote:

Originally posted by Denise-Elaine:
Yesterday she had one of her sad moments when she said, “Why am I that way? Why can’t I wait for things any more?” How do you answer that?

"It must seem weird to feel that way, huh? Maybe tomorrow things will seem different."

Three comments:

1) My mom is much like this. Pretty delusional, but very social and talkative.

2) If you do move her to a long-term care facility, make sure that they will administer meds AND that they have experience in doing this for residents with dementia.

She will be wheels-off in a New York second if her meds slip.

3) It might be that adding a med like Celexa, an antidepressant, will help with the intense "must have it now" feelings. My mom had some VERY intense feelings and Celexa has done a good job of turning down the volume, so to speak, without zombifying her.

Denise-Elaine:

You really have accomplished so much in the care of your mom. I just wanted you to know how monumental all of that was and is and you did it alone. I have a lot of admiration for you and I hope that the situation will smooth out more for both of you and you will have a chance to also take care of yourself. My best thoughts and wishes to you and your mom. And welcome to California

This has to be short and sweet - library computer. Internet in our new, temp quarters is the worst.

But I wanted to briefly say thanks, and MORE LATER. Virtual hugs...

Hi Denise-Elaine,

I'm so glad you finally posted and gave us an update on your Mom. I hope that things will start to settle down for you. It's great that the gero-psych unit did such a great job with your Mom.

Take care - will be thinking of you!

Denise-Elaine it appears you have moved mountains! Wow, I am in awe! You are doing a fantastic job for your Mom and yourself. Just incredible!

Internet at our temporary residence is working for the moment, so I will follow up a bit.

Serendipity, thanks for the reminder about taking care of myself first. I believe that is one of the true values of this board. We all need that nudge now and again.

Grassflower, I'm glad you "get it" ... I think too often we think of this disease as being fairly uniform in nature. This variant -- social and talkative and seemingly lucid, while not being able to remind which drawer things are in or how to make tea -- is so deceptive. It doesn't "look" like Alzheimer's or other dementias that get more press. It almost takes a meltdown to get people to recognize the dementia. Which is too bad.

Mycats, footballmom, and summerskies, thanks for your kindness. I feel like I've through a wringer and hope that one of these days, things will be even better (before they get worse -- but one day at a time).

One thing I meant to mention earlier: The doctor at Pomerado also noted that my mom's dementia is bass-ackwards. She has lost more of her long-term memory than short-term.

Again, if only we could figure out how the brain worked, how to stop the disease from destroying brain cells... ! One day.

Best to you all, Denise-Elaine.

That was an update well worth waiting for!!!

Denise-Elaine, your comments and writings have helped me in my journey as caregiver for my Mom, age 82, in 5/6 stage. Keep yourself going, doing the right thing! Mom can appear rally lucid and with it one moment, the next moment she's getting stuck with the same repeating repeating over and over again same old same old! Her new one is she doesn't know how long she's lived in the house, I've told her 10 times in the last hour that its been 38 years. She used to live by a calendar, she still does, except the days are all confused, today has been Thursday, Friday, Saturday, Sunday, and then Monday, except all in randomness. Putting things away in drawers, like sorting knives, forks, spoons, is also random. She used to be the queen of the recyclers, now she doesn't know where the papers go.

Keep the faith!

OK, Denise-Elaine, we're ready for another update any time you are.

Hello dear ones (hi gremlin, JAB, Summerskies!),

There hasn't been much to "report" since July. Things have just plodded along at a steady pace.

Think I had mentioned before that we had gotten Mama's Medi-Cal approved. In August, they approved it retroactive to May/June, which meant that all of her hospital bills were fully covered. Then hooray for President Obama, her meds now cost $3.20 for a month's supply of Aricept, and $1.10 for generics, since Medi-Cal approval triggered all sorts of good things from the federal level.

[People in Utah don't have a clue what they are missing out because of their state legislature's stinginess and insistence on doing the bare minimum. Every day I am here, I'm thankful NOT to be in Utah!]

As noted before, the diagnosis was severe dementia with psychosis, and diagnosis for the foot issues that took her to the E.R. in May (in Utah) was frostbite, not edema as the Utah docs determined.

Well, a recent full physical - and keep in mind, she had a so-called full physical in February 2009 in Utah - revealed that her osteoporosis is so advanced, her bones are in danger of snapping in two at any time. And her lower back pain was advanced arthritis, inflammation of the lower lumbar, so bad the CA doctor was surprised that the two conditions combined had not caused her spine to snap in two already. Which would have been disaster.

Further, her blood pressure and cholesterol are so elevated, she's at extremely high risk of a heart attack.

Seriously, any of you thinking about taking a job in Utah - if you have elderly parents with dementia issues, don't!

From June through late August or mid-September, she held pretty steady. Not back to 100%, but definitely not the same issues faced from January to May. No wandering, no "I hate you", and a semi-awareness of some (but hardly all) current events. She still was not able to do simple arithmetic, she couldn't remember her mother's or siblings' names. But she did remember mine.

The last couple of weeks, she has started slipping badly. Almost back to the "I hate you" mode.

The thing that is really driving me nuts: There is one and only one TV show she will watch, and that's NCIS. Let me rephrase: RERUNS of NCIS. She cannot handle this season's new shows, because they have introduced new characters and new plot lines.

She simply cannot watch other shows, because she cannot follow them. (And she falls back on her usual excuse that she doesn't like them because they are boring.)

Her new routine consists of the following: Get up, eat breakfast, go back to bed, eat lunch, go back to bed, watch NCIS (argh, USA Network runs four hours a night, and very often 12 hours on Saturdays), and go to bed. I cannot get her to go to the library ("don't like it").

Since we are sharing a very small furnished studio apartment as I continue to look for a job (this recession stinks), I really have been going nuts the past few weeks.

What triggered this post - the age-old complaint about siblings. Wrote my brother an email telling him how desperate things have gotten, what Mama's condition is now, and how he has to step up to the plate.

His response (some of you can already anticipate this): He just doesn't have any extra cash right now. He's decided he HAS to have a PhD, so he's paying big bucks for online PhD courses, and he's also decided he wants to become a U.K. citizen, so he's paying those legal fees, so sorry sis.

So angry at him right now, I could spit.

But I won't, because I would have to clean it up.

Still enjoy life in California. I cannot imagine how difficult this would all be right now if I had to deal with Mama's continued decline AND medical bills.

More later, hopefully if things improve.

WOW...is all I can say after reading how much you have accomplished and what a tremendous and smart caregiver you are...and this is the first time I have read any of you posts...god bless you and your mom is truly blessed to have you for a daughter..I hope things continue to go well in sunny CA for you...you sound happy.

God Bless,
kim

Kim (bledsoe),

If nothing else, you made me smile. I feel like anything BUT a smart caregiver right about now...

I will only say that these boards got me through some pretty awful days last spring.

Thanks for the smile!

You've really accomplished a lot, that's amazing. I remember how worried you were about the move. I am so very glad the doctors could find solutions for your mom, that was great!

NCIS, I wonder why? We'll never know the why for a lot of things I guess :-D

Crella, the even-more bizarre thing is: Her favorite NCIS character is Ducky's mom, who has dementia. "I love that woman," my mother says every time Ducky's mom shows up onscreen.

This week, I offered to go to the library to work until 9 p.m. so she could watch NCIS without it being an issue. She said no, she would rather read.

Oh sigh.

I'm curious -- why do you think Utah is so bad? I mean the underlying cause of why it is inadequate. Or is California just so much better that it pales by comparison?

Geez, woman, I thought you'd fallen off the face of the earth. You can always check in just to say "hi", even if you don't have much to report, you know. We worry when you disappear.

We watch a steady diet of NCIS, too.

(And I love Ducky's mom. I don't think my husband knows what to make of her.)

JAB,

It's just hard to post here or do anything "sensitive" when my mom is literally in the same room. You know? Really, things have got to change for the better, for MY sanity's sake. (What's the old Marx Brothers line about believing in Sanity Clause?)

ALM, I had written a very long response to your question, when our wireless service died. Instead of trying to repeat that, may I simply suggest that you read my posts, especially the ones from March to May. And especially the one about the E.R. experience in Utah.

Not trying to be rude, not in the least. It's just that the topic has been pretty thoroughly exhausted already.

Best,

Me.