On A Need To Know Basis

If I had to give advice someone who was an Alz caregiver, it would be to give information on a need to know basis.

Simple.

Very effective.


Why do AL and Memory Care facilities work so well for Alz patients? Routine. Routine. Routine. And then more routine. I have learned over the last few months that Mom does her best when she spends most of her time, I mean 90%, at her apartment at AG. She even has said herself that, "Well, I am a little off today, had to call you, doesn't take much, a little blip in my regular routine can throw me off."  She is extremely self-aware and sees this, not all that live with Alz will see this in themselves. We are both lucky to have her level of self-awareness. What initially caused her a lot of stress, now reduces her stress.

As I head in to this Holiday season. Lots of events coming up. Dinners, get-togethers, etc., I am keeping plans to myself. There is a routine  to that as well. It is November, we can talk about Christmas, it is far away. We talked about Thanksgiving over a week ago. But I will not call her the night or even two nights before dinner and remind her. She may wake up each day or maybe even think randomly in the middle of the day that she was supposed to do something and has forgotten.

So I will call her in the morning and remind her that I am coming to get her for dinner with Ben and his sister's family.  Simple. Very effective.

Another example:

As I have tied things up at home or when Ben and I got away for a weekend, I do not tell that I am leaving. I tell her after the fact. "Things are good at home Mom, we have moved everything down to storage. All set!" Boom. NO stress for her. Even her knowing that I am not in MY usual routine can upset HER usual routine. So I keep things quiet and let her know as needed.

It really did not take me long to figure this little trick out. At first I was a bit nervous and felt. as if I was lying to her. I was over that very quickly. Logically I knew that I wasn't of course, but emotionally it felt off.  And I have even told her that I use this tactic. Being a teacher/therapist she COMPLETELY understands and is proud that I am doing so many right things for her.

Finding the right coping strategy can be difficult, but there are some that are universal. This one is. It is important to keep things simple. Routine. Low stress. Of course, it depends on what stage the loved one is in. With all the reading and talking I have done in search of advice, in the end, I know Mom the best. I am intelligent. I have armed myself with the knowledge to make the best decisions for her care. So far so good.

BOOMSHAKALAKA!

Have a great holiday-Be thankful and stuff.
XXOO

Gill T. Pharasick

This past year I did a lot of reading about how caregivers survive being a caregiver.

From being a full-time caregiver to where I am now with Mom living at AG I have read professional works, funny stories and advice from others all over the country going through exactly what I was experiencing. I was truly surprised at how helpful all of that reading was for me.

I have been able to get back to normal this school year. I can go to all the meetings because I don't have to rush over to AG to spend time with Mom everyday. I have started an anti-bullying club and it is going well. I can attend games and get all my work done. Unfortunately all of my time and energy is devoted to school. My house is a disaster and I have not seen Mom as much as I'd like. Hence, the title of this entry. I am feeling very guilty about that. Yes, I know I have to do what I have to do. I am also dealing with Mom's house and that is taking some of my time.  Everything is OK. But, I still feel guilty. I can't help it.

I am looking forward to this week-Thanksgiving Break. Have the whole week off. I will be able to spend time with Mom.

On a positive note, Mom is doing well. She is happy. I was worried the change in weather and thus change in her routine would be difficult for her. It was a tiny bit, not sitting on porch with friends hit hard. But, all the residents are working out  a new routine.  The lounge is now more of a hot spot. There are also many more activities during the winter season, for that same reason.

Autumn Glen really has been amazing. Mom loves the employees and residents. A smaller facility is exactly what  Mom needed. The feeling of that building when you walk in is very comforting. I knew it the first time I went for a visit with Ben. Just felt right.

All in all I guess I can't complain. Or rather shouldn't. This blog, after all, is partly me complaining and venting. Life is stable, and for me right now, that is enough. Lots still to do regarding Mom. I'll take stability over excitement for the moment. Stability allows me to sleep. I need lots of sleep! Ben says I smile a very big and particular smile when I am in bed. He says it really is my 'happy place.'
It's true. I'm bed right now and I am totally content.

I think I have written about my love for my bed before. See, I do truly LOVE my bed. 

Giggle.

Might as well say that I'm addicted to boooooks....

We all know Mom LOVES to read. She has had a much more difficult time doing so since
she began to decline. I mean, with short term memory loss you would read the first chapter over and over again!

We both decided the newspaper would be a great way to keep her reading, but not as stressful as a
novel. It has worked well. So well that she has been picking up other novels and non-fiction books in her room and reading bits and pieces (all books she has read before).

I never thought books would present one of the funniest things Mom has done during her journey with Alzheimer's.

She had a TON of mystery novels on her large bookshelf and wanted to make room for other things, non-fiction is easier and more practical for her to read. So she decided she wanted to donate all those novels to the "library" at Autumn Glen. In the main foyer they have a large bookshelf with not much on it. Mom's donation really made it more enticing. She donated about 40 or so books.

She began visiting the 'library' more often after this donation. She was just fiddling around, organizing and browsing. One day I came for a quick visit after school and she had several stacks of books in her room. I recognized right away that they were the books we had donated. I said, "Mom, why are these here, you wanted to get rid of them, make room?" "Well, no one was reading them so I took them back!"

I just giggled and said, "Mama, you have to give it time, and you can't take back a donation!"
She laughed. We took them back. All good.

In the next month she proceeded to do this 3 more times. Each time the same conversation and the same trip back to the library. The last time she said, "I don't why I am doing this. Stupid brain. I guess I am just addicted to books!"

I laughed and hugged her. "Yep, I agree, you are."

After that it stopped.

Mom does random weird things. Dog food in the fridge, which I just finally left. It IS canned, not like it's a bag of dry food. I think she just wanted it all off the counter, took up all space.  The remote in her purse, which cracks me up. That is apparently very common.

I have to say, nothing that is a big deal. Oh wait, I found a pair of underwear in her purse one day. I didn't say a word. I checked her purse while she was in the bathroom, just to see, glad I did! Other than that she is pretty neat and organized. NO idea where that came from, she NEVER was neat and organized!!!!!!

I'm ready for more, bring it on Alzheimer's!

She Works Hard for the Money...da da...da dahhhh

HOLY HATE MY JOB TODAY BATMAN!

Nothing new about Mom on this one...just work venting.

Test today. Calm, quiet day....NOT.
Actually, all day was fine, until last period. What is wrong with these kids!
What are they eating???? Do they sleep??? Is someone injecting them with hormones?

It was a disaster. Two girls arguing. Another called me a bitch. I earned my crappy income today, boy.

I did not stay very calm. I reached my limit. I thought I had with these same girls two weeks ago, nope, I hadn't. I'm donzo. And if you push so hard that even I am not on your side and will work with you....that's pretty bad. The kids put me right up there with counselors and the social worker. I want them in class, I want to help them.  I am willing to give chances, talk it out. Not anymore.

I guess what makes it particularly hard to swallow is that I was looking forward to focusing on school this year. And I am....but it's not a happy place. Attucks is just not what it was...the program is going down hill. It's really sad. 

For years I have known that I wanted to try something different, but with the economy being a mess I was happy to have a job. Then I came to love teaching again and wanted to stay. Now, I don't know. I just don't know.

Makes my heart hurt.

I'll work it out, I always do. Meanwhile, I am just going to vent, complain, whine, whatever I have to do to survive.

I'm Only Sleeping

I wish I was sleeping.  I do not get enough of my happy place...my bed.
Ben does say I have the most serene smile on my face when my head hits the pillow.
Oh, how I miss my bed.

I don't think I have ever worked this hard. Not in college when I had a full time job and a full load of classes. Not during student teaching. Not my first year of teaching. Never. I am working my ass off.
And working this hard just to get the basics done. And it's not just me. Several factors have made this year hell.

1. Back to 8 period day, 3 min passing period. What a mess. Kids late CONSTANTLY. And I don't blame them. It's not enough time. They can't even pee.
2. Evaluation process is demanding. Although, not a big issue for me personally, but stressing to a lot of folks.
3. LARGE classes. Even for me in Title.
4. Very large group of middle school kids, they are all nuts.
5. Lack of man-power.
6. Discipline is off the chain.

Something has to give. I am going to crash by December if this keeps up.
I have no life.

I know my previous post discussed all of this. But, it hasn't changed, it has gotten worse. And I am having a hard time keeping my spirits up about the entire situation.

Mom, on the other hand, is doing well. Her stress level is still down. She doesn't call daily. I check on her often. The doctor was worried that she didn't know how to use the phone, or how to find my number. But, I paid attention this week (called her a few times), ask AG to keep an eye out. I don't think that is the issue. I think she is just relaxed. And by the end of the day, tired. She calls 3-5 times a week. I do as well. I am not seeing her during the week as often as I'd like, but there isn't a damn thing I can do about that. Just not enough hours in the day.

Doctor appointment on Monday was decent. Her memory test went down, but nothing to concerned about it. She is doing so well, nothing weird in her apartment, so not freaking out at this point.  She could very well be declining, but not to a point that she needs more care. Not yet, anyway. *Sigh*

I am looking forward to Saturday. Picking Mom up for a visit at the Pharasick's. See her boy, Walter, and watch some Poirot on Netflix. It will be good for us both.

I have been missing her a lot lately. Not because I can't see her as often. I am missing the old Mom. The one I could talk to. Tell school stories too and get advice. Have her remember what is going on. I still can, and she still give good advice. But I know she won't remember in an hour. I read a lot about grieving during the period of declining with Alz. It is hitting harder and sooner than I was hoping for.

The tables have turned and it is very hard for me.

I am trying to let myself feel the grief. Not push it away and also not take over.
It's a tough balancing act.

I recently found out an old friend has moved home to help his mother take care of his father who has Alz. I feel for him. It's hard to see friends go through this.

As I write tonight I realize that I need to write more often. It does help. Even if no one is reading it regularly, it's a great way for me to get things straight in my head. I was never good at keeping a journal. But, now I have a purpose. Maybe I will pick a day each week to keep up. Hmmmm...

A little something to make all of you smile.
Yes, Jim Henson or Frank Oz stole this. Whatever, it's hilarious.
Holy Shit.

http://www.youtube.com/watch?v=yXo1ufdQ4sg

Finding the wind for my wings (I couldn't help myself-giggles)

School has started. Just finished Week 2. Holy Busy Batman! Crispus Attucks no longer as a block schedule, we are back to 8 classes per day....man, we were spoiled. I am beat down! On my feet more, talking more. The entire staff is saying the same things. Tired, over planning, lots to grade.
The cherry on top is that I have wayyy more students than I am supposed to have. Title I equals 15 kids per class....that would be 80-90 kids...I have 140. The regular classes have upwards of 200. It is nuts. The building is packed with stinky teenagers.

Got caught up on grades this weekend. Everything else is organized. Good to go. Eating decently. Sleeping good. If I can keep this up I will be just fine. I think it will take me a few more weeks to really get used to the new schedule.

One of the reasons I have been able to really focus on school is I am not so distracted with Mom all the time. She is doing VERY well. She has really turned a corner. The daily calls been decreasing. I can go several days without hearing from her...then I have to call because I am worried. The first time it happened I tried to stay positive, but I was just sure that she was going to be a mess. I went to visit. She was completely fine. Watching TV, doing a crossword, happy.  She does have days when she has to call several times, but typically not until the afternoon. That is when the 'sundowning' hits.

A remedy for her bad days has been to have a few snacks, make sure her blood sugar is stable. It really works. So I stocked her with some snacks, juice and tea. Not only does it help her through a rough patch, but she is sleeping better as well. Her 8pm snack really does the trick. She also has continued hanging out with friends and participating in a variety of activities. She is also playing solitaire, listening to CDs, and just enjoying life. I am proud of her. I know it has been hard, but she really is being positive and not letting the scary part rule her.

I am getting better too. I have not stepped back into the world of the living completely....work has been my focus. But, I miss my friends and I need to get out more. I have always been quite a hermit with random chunks of years where I was a Drinking/Dancing Queen. I'll get there eventually. I do things in my own time, always have. A big part of my 'staying in' is not wanting to talk. I talk all day, talk to my Mom, and when I have free time I just want to shut the fuck up. Watch a movie. Drift into another world. Distraction. What I really need is a vacation. Beach. Or mountains. For 2-3 weeks.
Ahhhh, it's good to dream.

Damn. I keep forgetting we really need to start planning this wedding we want to have next summer. Stupid party planning. Boo hiss. I do, I do...party....then VACATION. I cannot wait to spend that time with Ben. Just the two of us. Nothing to get in our way. It's going to be wonderful. So if we can get our shit together, my dream vacation with Ben will actually happen!

For right now, I need to prepare for another Monday.

Time After Time

I bought Mom the coolest and most practical gift ever. A large digital clock that also has the day and date on it...she was ecstatic to say the least. I have been looking for one since she moved into to AG. One of the most common difficulties with dementia(no matter what type) is confusion with time. When the brain is not processing short term memory, the first thing associated with that is the ability to process the passage of time. It is one of the reasons why AL is so helpful for these patients.
They receive a stable schedule and routine that they could not provide for themselves.

Mom asks daily for the day of the week and the period of time she has been at AG. It frustrates her greatly. Especially being someone that was so driven by time her whole life. Some patients are just fine with the routine, that is enough for them. Others need something more to help stabilize them, help them feel more in control of their surroundings. Having this clock that also shows the day and date allows Mom to make use of her calender. The calender becomes meaningful and not some
daunting task. It has already made a difference. Even though it doesn't magically solve her memory issues, she looks at the calender many times a day, she feels more in control and more connected to the real world. According to research it will take about 3-5 weeks for this feeling to really set in and hopefully make her feel less anxiety and depression.





So simple. So useful.
I was surprised how expensive these clocks can get ($150-$300). I finally found one on amazon, 50 buckaroos. If you wanted blue or green LED it was more expensive. I went for the red. 12" long and it is the smallest one. Ben's comment, "It looks like a score board." He's right, it does.

The rest of my world is moving along. I have been pretty lazy since school ended. I am totally fine with that fact. I needed it. To just do nothing, take naps, watch TV is the most amazing feeling. I am feeling like I can finally be productive again this week. Actually, the first week I was pretty busy. Which takes away any guilty feelings I had left about being lazy lately.

And, of course, dealing with Mom's house is looming. Ugh. I'll think about that again tomorrow. Shake it off, shake it off.

Actually, it will be just fine. I WILL NOT STRESS ABOUT IT. It will get done eventually.

Happy Monday. NAH NAH NUH BOO BOO! YOU'RE AT WORK ANNNND I AM NOTTTT! MUHAHAHAHAHAHAHAHHAHAHAHAHA!

It Drives Me Crazy! Oooo, ooooooo...

It is beginning to drive me nuts when I publish a post and the sentences are
spaced. The first 5 or 6 sentences of the last post were a paragraph.
I have tried to find the issue to no avail.

What the hell, man.

And yes, I care way more about the aesthetics of my 'blog' than I do my grammar
and spelling.

Damn.

Summer Breezin'

Summer is officially here for me. AAAAAMENNNN!

I am taking a few weeks off before I begin the process of packing up Mom's house.
I need a break. I also think I have over planned, by a lot, how long it will take me to get things done.
AND tomorrow will be the first day I do absolutely nothing since school ended a week ago.
I am pretty pumped. Sitting on the porch, cup-o-coffee, watching Weeds, that is how I will spend my morning. Can. Not. Wait.

The latest on Mom:
I think there is a large possibility that she does NOT have Alz. That's right folks, you heard me, no Alzheimer's. I have been doing a lot of research and her major improvement in the last few months is very specifically NOT a symptom of Alz. There is no fluctuation of abilities. Mom went from not being able to do a lot of daily tasks, not being very agile to picking out cute outfits and never using my arm to walk to the car anymore. It's amazing. Truly.

She is still having short term memory problems and dealing with depression. But I think the real culprit may be hypothyroidism. It can cause  a lot of issues including dementia like symptoms. We do know that Mom has a low thyroid and seeing a specialist in July. The good news....it is treatable. I'm not a bonehead, I do not think that there will be a magical pill that will restore Mom to her old self. But, there could be major improvement with short term memory, ability to focus, and her emotional state. Which would mean less stress for her on a daily basis. And thus, less stress for ME on a daily basis. Also, less stress for Bongo Benny on a daily basis. Look at  all that possible lessened stress.....

I won't even get into all the article I have read about a misdiagnosis for this exact situation. Ok, I lied, I am a bonehead. I do think that things could really get better for Mom. Not completely, but kinda hoping she could at least read a book again. Oh, and remember that I am paying her bills and that she lives in Indianapolis.

Fingers crossed.

FINAL COUNTDOWN

8 DAYS LEFT!!!!
That is all.


I have been reading a lot of Alz articles lately. Mostly about the biology behind it, the chemistry of the brain, genetic coding, etc. Talking with Daupher (Ben's sister, Jen) tonight I was reminded again of what I think about the genetic test that is very available to everyone these days. Yes, there is a test. HOWEVER, it only tells you that you MAY be a candidate to POSSIBLY get Alz. The test only works if BOTH of your parents had early onset alz. Which means before the age of 50.

I am all about preparing. I like to know what the deal is, the bottom line, what have you....but I don't really see the point with this one. I already know that there is a possibility for dementia/alz for me. I just assume this since Mom and Grama have had issues.  I am going to prepare whether I test or not. I think the test would bring me a ton unnecessary stress. So, there's that.

Mom is stable. Ups and down. No major change. She has had more bad days lately, but those bad days are also combined with lots of good times spent with friends. She seems to be able to pull herself out of her panicky moments if needed. If I don't answer the phone, I find that if I call back 30 minutes later....all is well in Arlene Alz Land. Often she doesn't answer and when I do finally talk to her I find she has been on the porch hangin' with the crew. Of course, sometimes when she can't reach me she calls Lynn. But, not always.

The nurses have said that she is doing well, despite crying more often lately. They also tell me it is normal that once a resident is initially settled there is another period of stress (she is at 2 months), then at about 3-4 months they really settle in and are much more calm. They have been right about everything else, so I am hopeful this time as well.

I am doing good. Ups and downs for me too. Mostly, I am on the up. My mood is generally better these days and I am not having a ton of self-inflicted stress. School is good (I really can't complain) and almost over. Sad my Seniors are leaving. Even though I have a lot to take care of this summer, I am looking forward to some time with Ben, my much missed friends and Mom.

I still think Alzheimer's is stupid. 

Feelin' Allllright

I am really working at keeping up with the blog. And it means so much to me that all of you take the time to read it. I was talking to Erik recently and we talked about how the blog was not just good for me as a way to vent and process, but also so that all of my friends know the story and I don't have to repeat a ton of emotional details. It has helped. The questions I find myself answering bypass the initial 'needing the facts' and get more into how I am feeling and how Mom is feeling.

About a week or so ago I hit a major bump in the road emotionally. I was angry. Frustrated. Not just about Mom, but how this has affected my life. Specifically, my life with Ben. I thought I was well aware of how I handle things. I do not ask for help. I keep much of what I am going through inside. I knew that I was doing those things....but I didn't really accept what that meant to my emotional well-being. Not really.

I blew up. Mostly all over Ben.

But, it helped. A lot.

I hit my bottom and have really dealt with some issues since. And as a result I am much more relaxed. Happier. Much less emotional.

Cherry on top...Mom is doing much better too. She still has ups and downs. She still has days with the usual repeating of her top 5 questions. HOWEVER, she is having many good days....many good days in a row at that. That's my Mama. She loves being at AG. She loves her apartment, having her things, Bea, and privacy. What is making the difference in her emotional health is that she is making a ton of friends. They spend the days talking and going to activities together. She even has a best friend. The phone calls are not even happening daily. I often can go 24 hours with only 1 or even 0 calls. Same with Lynn. It used to be if she wasn't calling me, she was calling Lynn. Not anymore. Amazing.

Bottom line...things are calming down. I know that she will not stay this well forever. I'll take what I can. I am feeling like I can have a life again. I am also really starting see how I have changed.I am looking forward to summer. I need a break and also need to start over. I just want this year to be finished. Put it behind me and move on. Damn.

I do have lots to do at home. Packing up and selling the house. But the rest of the time, SCHOOL IS OUT FOR SUMMER!!!!!! BRING IT!!!!!!

Appreciated Teachers

This one is about me, well they all are, but this time only me.

I just sent this email to fellow staff members.
I needed this.

Thanks to this amazing person in my life who happens to be a student.
I can't wait until August....well, I can. But, seeing her will make it a great year
right from day 1.

_________________
HI Everyone-
Had to share...

Last year we lost a student, (name removed), to a charter school.
I was heart broken, such a great student and overall person.
We have kept in contact since her departure and last week she let
me know that she wanted to come back. She was really nervous. She
is currently a sophomore and knew that it would difficult to get back in
so late in the game.

She walked into my room at about 2pm today all smiles. I ran and gave
her the biggest hug.  She told me she had an interview and would be back next year.

Then came her tears and  the most amazing compliment I have heard in a long time.
She said they were happy tears. "I miss this place. I do miss my friends,
but I miss all of you...my teachers. You guys care about me, love me,
want me to succeed. I miss MY school. I'm so happy."

The came my tears.
That's what I call teacher appreciation, folks.
WE did that. WE are something important in this young
girl's life. WE have made a difference.

HAPPY TEACHER APPRECIATION WEEK!
WE ROCK!
Lara T.

It's Been One Week....

Did any of you sing the title of this post? If so, I should shoot you.

Survive first week back to work.-Check
Have my cell phone stolen.-Check
Have an administrative observation on a Friday with 6th Graders.-Check
Not clean one bit of my house all week.-Double Check

My first day back to work was, well, strange. It was strange to be back in the building and see all the usual faces and routines. I changed. Nothing else did. It made me very nervous and I am still not sure why.  Between that odd feeling and worrying about Mom, I was a nervous sweaty mess all day.

Tuesday was a tiny bit better....that is until my cell phone disappeared at the end of the day. Not worth any more of my time to discuss...it's gone. Already have a replacement. Mom could call my house phone. All is well.

By the time Wednesday rolled around I was beginning to get myself together. My classroom was clean and organized. I got the kids back on track. Let' take a step back....to the cleaning my classroom part. HOLY MR. STRANGE SUBSTITUTE TEACHER BATMAN.

I expected the usual mess. My desk messy with papers, desks moved around, and bookshelves a mess. Fine. There was MORE. Of all the weird things that were in my room and all the funny stories the kids told me (apparently he had 5 different kinds of fart smells), the NatGeo mess was the best.

There was a pile of National Geographics on my desk. Disheveled, no sign of a nice neat stack. There was also a twin pile of the same magazine on the floor right behind and to the right of my desk chair. I asked the kids, "Did he read through EVERY copy of my National Geographics?"

Reply...."DON'T GET ME STARTED ON THE MAGAZINES, TARASICK!!!!"

Mr. Strange Man would sit and read the entire day. He went through all of my Time and National Geographics. He would pick them up in a heap from the shelf, throw them on my desk and read each page of each magazine.  Then when finished, tossed them in the air behind him, which eventually created the floor pile.

Yep, really. Really happened.
Substitute teachers are just plain weird. There, I said it.
I am kicking myself for not taking pictures.

I did survive the week, however. I am feeling better. Mom did well this week. Lynn was around quite a bit and I went after school several days. I am doing well making sure that I take care of me too. I know I have to focus on school. I guess it would be great if I could keep my job. I was observed in the middle of the day during a class of 6th graders today. We were a little silly, but very productive and I am pleased and expect a positive evaluation.

I mean, I am after all, ME. Giggle.


Here's to my first week back and to Mom doing well. CHEERS.

Reading Rainbow!

My book showed up a couple of days ago (see previous post). It's fantastic! I am impressed.
It seems to cover everything about what a caregiver goes through. It does not give insight on the disease, but insight on how to deal with the emotions that come every minute when dealing with different behaviors associated with Alz. It provides short term and long term coping strategies.

I have 3-4 books on the subject now, I think I am going to focus on this one for a while.
I am about a 50 pages in...so far so good. I recently told someone that a lot of what I have read about coping with Alz is common sense (if you have a brain, that is), but I have also learned a lot. Knowing that most caregivers go through what I am going through is helpful in it's own right. And reading word for word what I am feeling...very comforting. It is amazing what the printed word can do.

I have been tossing around the idea of a support group. The Alz Association has a chapter here in Indy. I may check it out. If any of you have thoughts on the matter, especially knowing me, send them my way. I'll take all the advice I can get.

How many of you are singing the Reading Rainbow song????
Butterflies in the skyyyyy! Click ME!

My Own "Sundowning"

"Sundowning" is a common part of Alzheimer's. The person usually has a more difficult time doing things at night. Something they may not have a problem doing or communicating during the day can be almost impossible during "sundowning."

I have definitely noticed this in Mom. She tends to become more easily confused, scared and lonely at night. It is the one time I sincerely wish she was still with Ben and I. I talk with her every night around 8pm to help calm her. She has developed a good routine, however. She walks Beatrix around 7pm, we talk a for a bit, then I have her get her PJs out and  after we hang up she takes a shower and gets into bed to relax and watch the Hallmark Movie Channel (giggles). It seems to work well for her, the middle of the night calls have been few and far between. We often joke that she is lucky to be able to sleep through that part.

I, on the other hand, have my own version of "sundowning." The evening calls with Mom are the toughest. I just feel awful hearing that she is lonely and scared. She knows she is safe. She knows I am close. In fact, she is very aware that her 'feelings' do not quite make sense and that it is part of the disease. It just so hard to hear her crying and feeling so desperate. It is during this time that I usually hear the words, "I don't want to be in this world anymore. Why I am still here?"

After these calls is when I can easily fall into a bit of depression. For example, after last night's call I laid back on the couch to watch "The Walking Dead" with Ben. Even with all the zombies and gross stuff happening, I just couldn't distract myself. I was quiet and basically just bummed. It lasted for a bit, but I eventually pulled myself out of it.

I know that care giving is tough and I need to look out for me too. This blog, the Alzheimer's Association site (specifically the caregivers forum), Ben...these are all daily ways for me to vent and connect. I have had one really bad day, just down in the dumps.  But, I am doing just fine. I reached some sort of bottom or something. I feel more stable. It isn't going to be easy and this is all very new. So, one day at a time (na na na naaaa), breathe in and out, remember to have my own life.....I will make it. Deep down, I am just too damn optimistic, I can't see any other way then to get through and find happiness...I always do.

Mom, Walter and The Fro

 Walter loves Mom.

 He even told her, "Foxy Brown has NOTHIN' on your fly fro!"    

 Ok, not the greatest picture of the fro....let me just tell you, nothing is allowed to touch those curls but a hair pick!

One day at a time, one day at a time....na na na naaaa.....

Today was a pretty good day. No middle of night calls, no morning calls. I went for a short visit in afternoon and it was great. Only one evening call so far and it wasn't too intense. The Alzheimer gods are being good to Mom today.

Not going to visit tomorrow, hope it is another good day.

Afros Are Awesome

Mom got her hair done last week. It's fantastic. Totally a fro. I love every single perfect curl. Mom on the other hand....not so much...at first.

After being with Ben and I for about a month she needed a cut and perm pretty badly. I took her to a place here in Indy. The guy I wanted was busy, so some young girl did it. She wasn't really down with the 'old lady perm.' It was a disaster. It got her through, but it was bad. ANNNND she took forever. She was so nervous about doing it right that she took over an hour to roll. I thought I would die. Or worse, I thought she would die...with her neck in Mom's hands. We were both patient and tipped well. She did try, after all.

Now that Mom is moved into AL (Assisted Living-I'm learning tons of geriatric shorthand and slang), she can get her hair done at the facility. I knew this woman would be ALLLLLL about the 'old lady perm.' I was right, she was great.

BUT.

Mom told her to do it a little tighter. And tight it was. I just want to touch it all the time. YAY AFROS! She wasn't too happy, but then again she doesn't really care all that much. It is calming down now. I think it's really growing on her. No bedhead when it is that curly. Easy to do.

After all, afros ARE awesome.

Pictures soon. Giggles. I thought a little suspense would be good.

Teacher Teach Thyself....

I have been doing a TON of reading. Books, articles, blogs, etc. I keep
running across this title: Coping with Alzheimer's-A Caregiver's Emotional Survival Guide. 

I finally ordered it today...for 1 cent. Plus 5 bucks in shipping, of course. 
God, I love Amazon.

First 24 Hours

It has been 24 hours since I have seen Mom. Not one phone call since I left her apartment yesterday. I normally hear from her many times a day.  I would be worried, but I know that if something was wrong the facility would call. However, I can't help but be nervous and worry a little. BUT,  I am not going to call until this evening. I don't want to jinx it. I know I need to cut the cord and let Mom get used to things on her own. Now I understand what it is like dropping your kid off to kindergarten for the first time. Hard to TOTALLY relax. I just can't stop thinking about her and wondering if she is ok. I hope she is watching some Murder She Wrote, napping or even hanging out with some friends. Fingers crossed.

UPDATE:
She was fine until about 4pm. She called crying and scared. I think she received a phone call that set her off. It doesn't take much. She had a hard time at dinner, crying and did not know where she was. The head nurse called me. I talked to her and calmed her down. She finished her dinner in her room after we chatted for a bit. Then she took Beatrix out. She was much better after all of that and said she was tired and going to bed. Even with the meltdown....I did have a full 24 hours without contact and I did not visit today. Of course, I was a mess all day. Still am. But I did it. Can I have a cookie, now?

Drum Lessons

Ben has been  wonderful with me and with Mom. This past weekend he gave her his token beginner's lesson. Mom has a lil swing in her....

Ch Ch Ch Changes....

I woke up this morning to 7 missed calls and seven matching voicemails. That was down from 17 two days ago. The voicemails are all the same, "Hey, Doll, it's your mother. I need to ask you a few things. Call me." I can tell Mom is crying and can hear the fear in voice. It appears as if the calls started at 3am and stopped at 4am. She must have gone back to sleep. I didn't hear from her again until after breakfast. So I took a deep breath and dialed her number. I was relieved to find her voice on the other end in good spirits....it was going to be an "up" day.

Mom has been in an Assisted Living facility for 7 days. For 2 months before that she was living with Ben and I. She was shacked up in our small spare bedroom with her Jack Russell, Beatrix.  Ben and I picked her up in Michigan City at her house in the beginning of February. She was having a terrible time by herself. Panic attacks, memory issues, unable to pay bills. She wasn't sleeping well at all and not eating much either. We got her to our house and set up the spare room with some of her pictures and paintings. I took 2 months off of work via FMLA to get through this with Mom. I knew it would be a long haul...I wasn't even sure what the end result was going to be. But I knew she needed me and I knew I needed to give her 100% of my time. It has been well worth it.

For the next two months we worked on her health. A sleeping schedule, eating well, found an AMAZING doctor (clinic that did a full geriatric evaluation). There were lots of ups and downs. Good days and bad days. Sometimes she didn't know who I was....other times she was doing extremely well and you would have no idea there was anything wrong.

I researched a ton of Assisted Living facilities. I was nervous about the move. Would she be able to get around by herself? How much care did she really need? I was doing so much for her.....could she do some of these things if I weren't here? Can she afford this? I finally found the perfect place. Small, felt good, and affordable. Most importantly, she could keep her pooch.

We went to Michigan City and filled a trailer with her furniture and other things and got her moved in at the end of March. As she adjusts to her new surroundings, I am adjusting too. Trying to get my life back, resting......figuring out how to be normal AND be a caregiver is complicated. I am a changed person. And I don't  know this new person yet. Just because we have found a great place for Mom doesn't mean the struggle is over. Everyone kept saying, "It will be better once she is placed, you can get back to normal life." Not quite. I will never be the same...my "normal" will never be the same. Alzheimer's is now a part of my "normal." Of OUR normal.