Probably the last Post from Texas for this year!

Thought I'd make a few notes about things going on here around the holidays. Joe, Julie, Stacey, Levi and Micah left early Sunday morning for Auburn Alabama for a short visit with Erin, Eli and Elsie leaving Mom and me here to care for four dogs, two birds and a turtle - and each other. So far, so good, I think.



We had a good Christmas. Mom has been fairly disconnected about it all even though we have been baking and putting the tree up and going to church a few extra times. She sat with us around the tree on Christmas morning and took her packages, having to be prompted and helped to open them. It was probably a little overwhelming and confusing. But it was a good day for all.



I took today off in order to take care of a few things like laundry and tidying up around here and just relax with everyone gone. Mom and I made banana bread - she mashed the bananas and creamed the butter and sugar. While the breads were baking, we played with play doh and cookie cutters at the kitchen table making shapes and stories. Mom is very confused about where everyone is and even who everyone is. Tonight she asked me if I had ever visited her and Dom when they lived "up there." I said that I had and she told me a story about a young man wanting to take some girl with him across the street and asking Dom if it it was okay. At one point today Mom wandered to Julie's room where I was cleaning and then could not find her way back to her room. Over dinner of chicken sandwiches from Sonic (when we went to put gasoline in the car) Mom asked me if the other people left me here by myself to take care of everyone very often.



But the BIG news is that she got her hair cut. I kind of snuck it in yesterday during a outing to the dollar store where we had to buy booties and a blanket for the baby doll she got for Christmas, and a quick trip to the grocery store. Kroger's is in the same plaza as Pro Cuts, which is right next to Subway. I pulled into a parking spot and turned to her to say that this was a good time to get her hair cut. I got the stony stare straight ahead and a "no way" through clenched teeth. I pushed. She could get her hair cut here or I could cut it for her at home. Silence...and then "just two inches - only two inches, it had better not be anything else!" A slow, limping walk in (she does this for effect, only) and Mom was in the hairdresser's chair in no time. I got a chance to whisper to the stylist that Mom has Alzheimer's and is very confused. I let Mom do the talking with my support and she got a great haircut! A little more than two inches, of course, but she does not know that. I told her that she was absolutely right, two inches was just right. Her WHOLE objection was that it had to be long enough to curl under by her ears because - well you all know her prideful stories about her curly hair! It does still curl under at her ears, bot more importantly, it is not so long in the back that she can now actually brush all of her hair herself - more or less.



I may have told you that it is getting more difficult to report on Mom these days. Pretty much there is no drama but what has become more of a way of life for us. Mom does not have "behaviors" as much as she just needs much guidance and assistance and tomorrow she may need guidance and assistance with things differently than she did today. We speak simply and directly in order to communicate, often using visuals when possible. For instance: when asking her if she wants coffee, we show her the coffee cup and ask it more than once. After Mom mashed the bananas today, I had her cream the butter and sugar and said we were making banana bread. She asked if I had bananas.



That is life in Texas. From our family to yours - Happy New Year!! Plan to visit us this year!

PRECIOUS MOMENTS

You know what? We are all doing great! We have been baking cookies, making candy, baking special breads and making Christmas tree ornaments. Last weekend, Micah and I did some baking. Before that, Stacey and I made a big batch of pizzelles. I brought home from Michael's last weekend, some small easy Christmas ornament projects that Julie and Micah worked on. In all of this, I can't say that Mom participated or understood what or why we were doing it, but she hung around and did not retreat to her room. She even gave us advice about the pizzelles that they needed to be darker when we took them out of the iron. Then they had to be stacked. We took her advice and she was happy. She had refused to do the crafts when Becky asked her to, but today, I sat at the table and started some and asked her to help so we would not have a naked tree. She worked on some of those things like the ones she used to do that are already sticky for a little while.

During the day, Becky reports that Mom comes out of her room dressed with her jacket and purse ready to go pick Julie up from work. Since we began this, Mom has not spent as much time in her room other than for about 15 minutes at a time; I suspect it is because she does not want to miss going to pick Julie up from work. From Becky I know that Mom sits in the patio room in a rocking chair by the window and sings to her favorite Alan Jackson CD and plays with the dogs. Sometimes she sits in the Memory Room and Becky says that she has even sat on the sofa in the living room with her - which she never does when we are here. Becky is VERY high energy and it is difficult for her to just sit, but she has learned that if she gets up to do something, Mom will go back to her room. So she has practiced sitting with Mom when Mom wants to talk. I will include some of the statements from Becky's daily log to give you an idea who we live with these days. By the way, Becky gets Mom to change her pad and panties by refusing to go pick up Julie until she does. Mom pouts, puts on her stony, stubborn face. Becky tells her "you don't scare me!" And mom marches off to do what she was told to do. Becky follows her these days to make sure she does it too. Some daily notes: on Monday, she talked about wanting to go to church because she had not been since she got here; on Tuesday, Becky reported that her reception was iffy and words were jumbled; on Wednesday, Mom talked about her accidents, injuries and when she died (she meant Dinky), said she was going to kick Heidi's ass for pooping in her room and ate some sweet potato pie I had baked; on Thursday, Becky wrote "alert and receptive but still confused about when it's time to get Julie. Showed constant concern for my health because I had just given birth."; on another day, Becky wrote "seemed very confused and words were a mess. Words stayed a mess."

On Tuesday, Becky knew that I planned to take Mom to church for the Feast Day, so she talked to Mom about going to church when I got home and maybe she should get a shower. At some point mom said okay, so Becky went to get the water running and set out towels and stuff. She went back to the kitchen and let Mom know that the shower was ready and Mom did not know what she was talking about. Becky went through it again Mom said no. Becky tried some more and finally Mom got up and said "SHIT" and went to take her shower! I took her to church. She did not know why we were there, she said, but got into the swing of things.

On Thursday night, I knew that Joe would not be home until late after taking the train to Dallas for a conference, so we had a girls night out. Julie, Mom and I went to the little Italian restaurant in town. Mom wore about 6 necklaces and talked jumbled stuff to the owner about being Italian, speaking with an accent and about the Italian ladies at church, imitating them with her hands and accents.

This is only such a small part of our lives, of course. But they are precious memories to us. Sure, Mom spills her food, wears two different shoes, won't eat anything black or brown, etc. etc. etc. But even these are who and where she is and we get to be a part of it. When I think about what I could be writing about next year at this time, I know it will very possibly be something entirely different but no less precious to us. In many ways this year seems like an important Christmas season to me. We will probably put up our tree tomorrow and plan to decorate it not with the hundreds of individually wrapped fragile angel ornaments that I have collected over the years, but with the handmade decorations of our family.

Precious Moments. And just so I don't mislead you and you start petitioning the pope for my eventual sainthood, I will give you Joe's interpretation: "Better living through chemistry". A little Xanex goes a long way some days!

WE LOVE YOU!!!

We Are Thankful

Happy Thanksgiving!

Joe was determined that just because it was just the four of us for dinner like it is everyday, he wanted a turkey dinner. So he made one. He did a great job and it really was special for everyone. We sat at the dining room table, Mom at one end and Joe and the other. Joe carved the turkey and we passed the dishes of mashed potatoes, green beans etc. after prayer and each saying what we are thankful for. Mom was thankful that we were all here together. As we passed the dishes, Mom took what she wanted and passed it on. (we usually fix a plate and put it in front of her because she frequently refuses foods if we let her choose) However, she took a little of everything mostly. At the end of the meal I asked if she wanted anything else and she did say that no, she had had enough and that she had some of everything. I advised her that she had skipped the green beans and that she needed to have some. She was a good sport and offered to eat one. And she did! Now Mom had eaten a little of everything. I am sure Mom does not know the significance of Thanksgiving or the connection to having turkey, but because we did it all together and have pecan pie for dessert, she is having a good day. I know that Mom is bored, laying in her bed, sitting at the table, wandering around. But there is little to engage her in and I have to admit, I am the worst for sitting with her and doing nothing. Or even puttering with her on her stuff and listening to her mostly made up stories. It was easier to do the first hundred or so times.

It is also difficult to let her be independent and I know that the more I do for her, the less opportunity she has to connect sequential thoughts. But we almost always have mishaps. Spilled coffee, dropped jar of jelly, creamer in her water, clothes on over pajamas. For instance, this morning, when Mom got up from the table to put the jelly in the refrigerator and the peanut butter in the cupboard, I took them from her and told her that I was going to use them. I had prepared a cup of coffee and let it sit on the counter by the coffee pot, which is on the same counter as the sink. I turned to fix my toast and Mom got up to take her glass, knife and spoon to the sink. I let it go, seeing her out of the corner of my eye. I turned with my toast to pick up my coffee and found her dirty silver ware in my coffee! Joe and I got an exasperated giggle out of it and I had milk instead. Mostly what we got out of it as we talked, was how precious these times are and the regret we have that others are missing out on these day to day moments.

Like earlier, as I sat with Mom at breakfast and stretched my fingers out and one of them cracked. Mom asked "can you fly now?" I assured her that I could now fly and someday I might just fly away with her. Mom was good with that, and although we noted the moment with our eyes, did not dwell on how we got to flying when my finger made a cracking noise!

Moments of Joy and Thankfulness! We are thankful to have this time with Mom. I wouldn't/couldn't have it any other way. We love you all for sharing this time with us by keeping us in your thoughts and prayers!

Nothing is Something

I know, it has been awhile. Maybe because, I worked on a perfectly good post almost two weeks ago and as I finished up, I hit a mystery key and in less than a blink of an eye - GONE - nowhere to be found! No draft, no minimized version at the bottom of my screen, no record of it that I could find. I add "that I could find" because it is quite possible that one of my computer savvy daughters would have known where to look and I wouldn't have been so disheartened.

This week what I have to write about Mom is NOTHING. Nada. No change. No drama. I guess that's something after all. So here are a few updates.

1. We had a regularly scheduled appointment with Dr. Birdwell. Mom is healing well. No pain
pills for over a week.
2. 6 month check-up with ophthomologist - no change, come back in 6 months.
3. Occasional nights when we awake to the kitchen light shining in through our bedroom door
to find Mom sitting at the kitchen table. I put her back to bed.
4. Receptive and expressive language is challenging for all of us. She gets frustrated when she
can't tell us what she wants to say.
5. Still dressing herself but not well. Sometimes we have pajamas over clothes or vice versa.
Frequently the top is different from the pants and all are different from the socks. She likes
to be color coordinated and has even in the past hung her clothes according to color.
6. Is very bored. Mom sleeps or sits at the kitchen table. We have found that when we sit there
with her or work in the kitchen, she will sit there. Conversation is difficult because Mom does
not understand what we are saying and she has a difficult time responding if she does
understand us. The minute we leave the room to do something else, she is in bed. Crafty
activities have ceased. We try to give her little things to do to "help out" from her chair at the
table, but mostly she is unable to follow through.
7. Mom likes going places. She and Becky have been picking Julie up from work every day. Joe
takes her to the grocery store (to push the cart he says) but she tires easily. I am quite less
inclined to take Mom anywhere but church on Saturdays after I have personally watched her
shower and put on clean panties and pad. Otherwise, she quite frankly, can smell like a dirty
diaper. Unless I get in her face and stand right there with her, Mom will not change her
underwear or pad. The week before last, Becky let me know that when she told Mom to
change her pad and/panties, Mom had done so. But when I went to Mom's drawer one
morning, I found 3 opened pads that Becky had handed to her and a wadded up pair of
panties stashed under the socks. Becky and I chuckled and wondered how so much of her
thought process is lost, but the devious part is still in tact!
8. Some days it must seem to Mom that my only interaction with her is negative. You can't be
mean to the dog. You can't go outside now, it is dark and cold. You have to change your pad,
you don't smell very good. You have to have some dinner before you have ice cream. Stop
picking at your skin, you have sores and blood all over your arm. There are germs under
your fingernails. Please wash your hands again, you just went to the bathroom. It is NEVER
ending.
9. Joe is clearly not as rigid as I am. And, I don't know if any of you have ever noticed or put it
together, but Mom likes men. Not a newsflash, I know, but if there is a man in sight, she is
there, being sweet, touching, hugging, flirting...It's shameless! I know now that Mom has
always been like this, but it did not affect me. Given now that I know my parents were never
married, Mom was married before and has some mystery history there and some other stuff,
I have pretty much decided that our family was pretty much the "white trash" that Mom
called other people! (boy, I haven't heard that term in years)

So, I have rattled on long enough. Before I turn this into a dumping ground instead of an update on Mom, I'll say that we are all well and blessed and thankful this Thanksgiving week. I have been thinking of Thanksgiving as just a much needed long weekend for me. But Joe brought home a BIG turkey from Kroger's so I am thinking he has another agenda. We do love you ALL.

Here It Is!! The Lost Blog!!! (thankyoustacey)

It's another Sunday night. No church or IHOP this week. We have spent the weekend managing Mom's pain. It seems as though she is either sleeping from the pain pills or up sitting at the kitchen table holding her side and leaning over a little. It is difficult to determine just how much pain Mom is in. If I ask her if she is hurting and needing a pain pill, she says "no". But then she holds her side, wheezes and gives a pathetic cough. So I give her a Tramadol every 6 hours or so. It has only been a week since her fall and it could take a while for bruised ribs and sore muscles to heal. The doctor said to let her know if Mom showed signs of an altered mental state to let her know - right! Mom is confused and disoriented a lot these days. She has a routine doctor appointment on Thursday at which we will mention the fall. There isn't anything to do about the mental deterioration but will check out other health issues - which have remained very stable.



I just put Mom to bed. She slept in her clothes last night. I went to bed early but said Mom came out at 11:00 dressed still and her put her back to bed. Tonight Mom had her ice cream and pills and went to bed. I followed her in there and she was in bed in the same clothes. But she was open to the suggestion that I help her put her pajamas on. Mom has refused to change her pad since her shower yesterday so tonight I was able to get her into clean panties (after redirecting her when she tried to put them on without taking the others off) and pad. When she took the soiled ones off, she tossed them with the pad still in them, into the waste basket. Which, I confess, I have done before when - never mind, too much information I think. Anyway, with gloved hands I salvaged the underwear.



Mom has been picking at her skin again. Her left upper arm has a dozen or so scars from sores that have healed and now, more open sores. There is a spot on her right forearm that she picks at also, but it is healed again for now. So, I dressed the upper arm with band-aids and tucked her in.


The END

Fall Back - Chapter Two

Guess where I spent a good part of the day? Yep! The Emergency Room. When I checked on Mom this morning before I left for work, she was in tremendous pain and could barely move in the bed. Our initial assessment on Saturday saw no contusions, scrapes or bruises and although shaken, did fine at IHOP. Mom was more sore on Sunday and more on Monday, but that is how bruised ribs and muscles are - progressively painful for a few days and tender for a very long time. By this morning, I feared she might faint from the pain as I tried to help her up. And being in so much pain on the left side under her ribs, she could not cough and that is the thing we work on every day - getting her to cough up the congestion! Which she won't do anyway without protest! So now I thinking she could get pneumonia from not getting rid of all that gunk. I got Mom dressed in some easily removable clothing, fed her half of her PB&J and gave her morning pills with a Darvacet. By the time we got to the hospital, the Darvacet had not touched the pain, so after x-rays, she got a couple of injections, one being morphine. A CT scan, blood analysis and urine sample by catherization later, we got the news that nothing was broken, just bruised as we thought. We came home with a prescription for Tramadol for pain to go with the Darvacet. Mom slept comfortably all afternoon.

When she came out about 4:30 she had the other half of her PB&J and some 7 UP. By 6:00 I had her eating a bowl of chicken corn chowder. By 6:30 I was cleaning up PB&J, 7 UP and corn chowder and her bottom dentures that came out with it.

Mom is back in bed in flannel pajamas and has had her night time pills and another pain pill.

Tomorrow will be a better day. Oh, and I didn't mention that yesterday, Julie called me at noon to pick her up because she was sick. Last week she called me at work to say she needed a change of clothes and feminine supplies. Today, I got to work by 1:30 and she called me at 4 to say she was feeling icky, could I come and get her?

Things I am thankful for today: Mom had no further injuries. I have a VERY understanding boss. AND with enough notice, she'll approve time off for my nervous break down!

Now you get another chance to guess in case you didn't get the first one right. Guess where I am going now?

Did you guess "to bed"? If you did you are correct and your name will be put into the drawing for a week's vacation in Texas - while I take a week of vacation someplace else.

Winner will be notified after the nervous breakdown! You know I love and appreciate you all!!

Fall Back

Let's see...Sunday night again. Mom's clock, as messed as it is, did not "fall back" with the others. She was up today as I tried to engage her with activities. This morning we sang to the Alan Jackson CD that she likes and made cookies - the kind that come pre-formed and frozen that the neighborhood kids sell for fundraisers. So, I put the baking trays in front of her with a bowl of cookies and suggested she put them on the trays while I attended to the pretzels I was baking. I turned around and she had piled almost 4 dozen cookies on one tray. As tactfully as possible, I advised her that they would bake better if there were only 12 to a tray, three across and four down. And we counted to twelve. One tray of cookies at a time. But it never did connect. Nice, warm chocolate chunk and pecan cookies. If Mom asked me once, she asked me a dozen times, "what are you going to do with all these cookies?" Um...Julie and Joe will take them to work. Or, maybe Julie and Joe can take them to work. And Julie and Joe will take them to share at lunch this week. As it turns out, some went home with the guy who was here working on the ceiling, some were eaten before they got to a zip-loc bag, and what was left went into the bag and went home with Micah.

It was such a beautiful day that I scrubbed down the gazebo and Mom sat out there for some time. We even ate our hamburgers and hot dogs out there. Mom stayed out with us for quite some time. And later she sat in the patio room watching Joe work on the pool pump and then she sat outside the front door for awhile. Lots of fresh air.

We did have an incident last night as we left church and Mom was getting into the van. Having pushed both Joe and me away as she always does, and leans on the car to step down from the curb, I averted my eyes for a second and Joe turned to put the walker in the car and Mom lost her balance and fell backward on her bum. She did not fall all the way back but rolled onto her left side. We assessed and were able to get her up and into the van. Mom still wanted to go to IHOP across the street, so we continued assessing as we drove there. I knew she would be achy, so I gave her Tylenol with her pancakes. By the time we got home she was hurting, so we added a Darvaset to the evening pills. Mom is still complaining about pain under her left breast. She has a three month appointment with Dr. Birdwell, but I will try to get her in tomorrow to be checked out. We had to trust our judgement after the fall. Go to hospital to be checked out? I am wishing we had, just to be sure, but Mom wasn't hurting and was more interested in pancakes than in spending five or six hours in the ER. So, we went to IHOP - she with visibly went pants, but with no complaints.

The clock on the computer says 8:03. My clock says it is time for bed too. We love you all! Good-night!

The Day will Come - but not Today

Day is done. Gone the sun. God is good. Ophthalmology appointment determined that Mom's vision has not changed in her good eye. It is still very poor, but it has not changed. In her left eye Mom has so little vision but there has been no significant deterioration to the internal part of the eye. We'll go back in 6 months.

Joe and I toured The Estates Memory care unit. You know, if Mom did not have a perfectly good place to stay, the facility would be more that appropriate. We were impressed by staff to resident ratio, the amount of activity going on and the low number of residents - 20 at this time with a max of 28. Our friend, Sid, was there. We have known him and his family for 16 years. His wife was Julie's teacher in high school and we attended Sid's Bible study. Sid was a tall, polite, gentle man, even as the Alzheimer's progressed. His family kept him in the home until he truly needed 24 hour care with eating, dressing, toileting and repeatedly tried to leave the home and became aggressive to his daughter who was his caregiver. Today, Sid was leaning sideways in a wheelchair having lost the ability to walk. He is fed by staff because he has forgotten how to do it himself. He is fed soft foods because he has forgotten how to chew.

One of the ladies sat in her wheelchair by the doors that open only with code keyed in, waiting for the door to open to either leave if she had a chance or to continue her job as the greeter at Wal-Mart, I am not sure which.

Others milled about the lunch room clearing tables, or sat in the living room listening to music.

So, the only conclusion I could come to was that Mom will not go there today. We have great care for her during the day. Becky knows Mom's moods and habits and changing moods and habits and goes with it - knowing when to push and when not to. And I have great support from Joe, Julie, Stacey, David, Micah and Levi.

Mom had a great lunch at Red Lobster with Becky and the retired teachers. She doesn't do fish but I heard she ate quite well of baked macaroni and cheese and french fries.

I want to add that I don't deny that there are moments I think I want my life back but then I am reminded that it hasn't been my life for a long time because in 1981 I have my life to Him to do with what He wanted. And today I know that this is what He wants. And His grace is sufficient.

For all of us!!!

Just the Normal Snags So Far

So, it has been a good week. Not that some weeks are bad, but this week we are rockin along in spite of what has become normal snags.
Have I mentioned what a miracle worker Becky is? Getting Mom to shower, brush her teeth, wash her hair, and change her pad? When I mention to Mom that she needs to change her pad and/or panties I get the glare and she rags on me to Becky about how I tell her what to do and she doesn't need me telling her what to do. As long as it gets done, I can take the heat!
Tomorrow Mom sees the ophthalmologist for a 6 month check-up. I don’t expect that Mom will be able to number one, understand his questions or statements and number two, respond to them. But if the doctor can get a look at her eyes, it will give me an idea how much her sight has deteriorated.
After that appointment, which usually takes about 3 hours, Mom has been invited to lunch at Red Lobster with the Retired Teachers in Burleson. She and Becky will be going there. Since Joe is off tomorrow, I am trying to arrange for us to tour one or two memory care facilities in the area to ask questions and get a better idea what is out there and hopefully be able to recognize when it might be time to move Mom to one of them. It is getting closer and I think it is important for Joe to get some information. And me as well. As a Social Worker in this county, I have been involved in placements and have visited a number of places. But it was never about my Mom.
Mom and Becky have been going this week to pick Julie up from work instead of me doing it. Becky thought it would give Mom something to look forward to in the day and get out of the house. So far it is working except that Julie misses riding home with me and giving me a rundown of her day. But she assured me today that she is on board with whatever supports me. She is wonderfully supportive!
Love you all!

Kicken Ass

So far do good today. In spite of Mom refusing to go to get in her pajamas and go to bed last night, today was pretty "normal".

Last night Mom insisted that she was not going to stay here, she was going to go to my house. She kept putting her shoes on, tried putting her pajamas on over her clothes, picked up her purse and folded up her blanket, insisting she was not staying her and was going to my house. After repeated efforts and telling her a number of times that it was too late, dark and rainy outside and I was going to stay her for the night also and we would go to my house in the morning, mom got into bed but promised she would not go to sleep. Earlier in the evening mom angrily expressed (in her own way) that she was going to kick some one's ass. Some short fat woman and her husband who had taken her pizzelle iron. And they had better not take her "Singer" or she'll kick their ass. Yep, she emphasized that a few times. She went on about that while I knew that the iron was in the box in the dining room and I told her that Joe and I would take care of it and it would be here in the morning. I figured she was still hanging on to that so I made like someone had come to the door and returned her pizzelle iron. I took the box to her room and she was very happy to have it returned. When I asked her if I should put it into her closet, she said no, she was going to take it to my house. We left it that way and she slept through the night after I assured her that the woman was not going to take her "Singer."

Today there seemed to be no indication that she was confused about where she was and expressed to Becky that Cheryl came to the rescue and got the pizzelle iron back.

Becky managed to keep her busy singing to the Alan Jackson CD that she likes and getting her nails done. The notes say that mom put Parmesan cheese in her coffee, so they started over with that.

Mom got her pajamas on and came out to say good night a few minutes ago. Guess I'll check in with her and get myself to bed. I'll bet you are all getting the idea that things are changing again here. You know I'll keep you posted. Love you all!

GOODmorning!

It is a good morning! We slept ALL night!

When Becky got here yesterday morning, mom was up and dressed (again) and eating her breakfast - still none too happy with me. While I finished getting ready for work, Becky engaged her in interesting conversation. I eavesdropped a little and heard the part about her not having any children and babies lined up and Deena being fed and diapered, she had two girls who are grown and married now, and no she is not Cheryl's mother or Bonnie's mother and she did not want to talk about Bonnie. We have a system whereby Becky makes notes about the day - here are some of her notes from yesterday: "was up when I got here...We had a quiz with memory - not so good; was very active, verbal and alert though her words were jumbled and I had to explain a lot; At 12:00 we went to "The Porch" and ate lunch with Cecil. (she loves men); she was so excited and repeatedly spoke of having a wonderful day; she laid down at 3:40 and fell asleep; up at 4:12; we went to DQ and got blizzards; very talkative and in high spirits."

I put Mom to bed about 7:30 and she is still there. Today it is raining and Becky may have to resort to that jig to keep Mom entertained. Yesterday when I mentioned in #4 that if the above did not work" and I wanted to explain that 99% of any effort failing or succeeding when it comes to Mom is dependent on Mom - her mood, her willingness, her stubbornness, whatever is going on or not going on in her mind. Some days, it is just easier and better to let it go than to allow an effort to become a confrontation and battle of wills. That isn't good for her or us. Just wanted to explain that a little further.

So, Mom's breakfast is on the table for when she gets up - on her own or otherwise, and I have to finish getting ready for work and head out in the rain. Honestly, it really is a good day to crawl back in the cozy bed!

God is so good and we are so blessed by all of you who love Mom and us.

It Is What It Is

Yes, I did say that I should post more frequently, but this is not what I had in mind. It is 2:30 in the morning and this is the third time I have been up with Mom. In spite of the fact that I have the monitor right beside me on the loudest setting, I missed the first time a little bit. By the time I awakened, Mom was fully dressed at 11:00 and sitting at the kitchen table having coffee and a Nonni. During the day, we keep what coffee Joe and I don't drink before work, in a carafe that keeps the coffee warm throughout the day. Mom had poured her coffee, put the creamer in and dunked her Nonni. I put a confused but fairly compliant woman back to bed in her pajamas and clean underwear and said good night. Time has no meaning right now, but the next time I was awakened by noise from her room, I found her standing beside her dresser with the drawer open, pushing a pizzelle into her mouth like a little chipmunk. Remember? Mom had hidden them in her room the other day so that they would not be eaten by Stacey and David and to "save some for Becky." I offered her a glass of water but she refused. Back to bed. A short time ago, since I had not been able to fall back asleep, I heard her up and met Mom in the kitchen turning the light on again. She sat at the table while I started her laundry, cleaned up the living room, loaded the dishwasher and put a clean cloth on the dining room table. When I shut the overhead light off in the kitchen and turned on the light over the sink suggesting that other people needed to sleep, Mom did wander back to her room where she is lying on the bed with the light on in there.

I only mention all of this at this hour because I may need witnesses at my trial to the fact that I was sleep deprived and not in my right mind.

New strategy today:

1. Becky is not to let Mom sleep past 9:00 but is to go in and clean her bathroom and turn on all the lights and get her up out of the bed.
2. If Mom is back in bed still by 1:00, Becky is to tell her that lunch is ready and to get up to eat it.
3. Then, Mom is not to go back to bed. They can sing, do the jig, walk the dogs, go for ice cream, whatever - but she is not to sleep the afternoon away.
4. If none of the above work, I may meet you here tomorrow morning as well.

Thanks for keeping me company in my heart and mind as I think of you and your love and support for Mom and for me. I love you all! Goodnight! or should I say Good Morning? Either way, GOOD is the operative word!

FUN is in the Eye of the Funned.

I'll start out with the old stand-by, "has it been a week already?" And yes, "time flies when you're having fun." So this week I'll tell you about a little bit of fun Mom has had.

Becky has taken Mom out to lunch a number of times, as you know. We have figured out a few places to not go, but besides IHOP on Saturday night, a new little Italian restaurant in town is a safe place because it is not so fast-paced busy and they know us and treat her great. The other place Becky has found is Golden Coral in Burleson. Becky has taken her there several times for lunch and they always meet up with Becky's mom and dad there. Mom talks about them and how they have "special" seats there and how she says funny things that make them laugh. So, this week, for Julie's birthday on Tuesday night, we went to Paisano's, the Italian restaurant, where they had cheesecake just for her and she had a great time even though Stacey and family were there. Then, during the week, Mom asked Becky if they could go to Golden Coral for lunch. Becky reports that she not only asked to go, but when they got to the restaurant, Mom pointed out Becky's mom and dad across the room! Now keep in mind that Mom's language is not quite like yours and mine, but we can usually figure out what she is trying to say.

Mom was having a good week. But that's not all of it! I took the day off from work on Friday so that I could do the cooking for the Taste of St.Bart's Fall Festival on Saturday. The booth I was working in was, what else, the Italian booth. I had obligated a big pot of sauce and several pounds of Penne Pasta. As an added food item this year, I decided to make pizzelles too. I got my puny little waffle iron out and mixed up the batter, all the time talking to Mom about "the Feast" and making pizzelles and the recipe and saying Hail Mary's, hoping that something would sound familiar to her. I could not find the "original" recipe so I was using one out of a recipe book. I asked Mom for her recipe and directed her to her recipe box, which she could not find and "someone stole it" but I found it and Mom sat going through the box mostly unable to read what was on the cards except for a few words. All the time I was talking to her about the recipes and other things. I showed her how my pizzelle iron was not heating evenly and asked if I could use hers. Mom did not know she had one, but we were able to locate one in her room and I heated it up. More talking and Mom got bits of memories about "my Italian ladies at the church" and the pizzelles needed to be stacked in sets of 12. So she stacked - 1,2,3,4,7,9,12. But they were stacked to her satisfaction. When I got tired I asked if she would take over. So she stood teaching me how to do it like the Italian ladies at church. She dropped the teaspoonful on the iron and closed it and I took the pizzelles off when they were done. We finished the batch and Mom was exhausted. So was I, actually.

That evening we had Stacey and family in for dinner for Micah's birthday. David's mom from Oklahoma and his sister from one of the Carolina's was here also. Joe had put a roast in early in the day and we had birthday cake. Mom enjoyed the dinner with no problem and kept trying to give everyone some pizzelles to taste after dinner. People were more interested in the chocolate birthday cake, but the hostess in Mom needed to get out the homemade pizzelles to go with coffee after dinner. She had a good day.

And of course yesterday, was church day. Mom came out of her room dressed in the morning amid all of the chaos of getting everything ready to take up to the church for the festival. When I advised her that she looked very nice but that after breakfast, I was going to help her with a shower, I experienced the "if looks could kill" face from her. She had no intention of bathing or having anything to do with me. When I joined her in her room Mom was changing into a short sleeve shirt so I reminded her about the shower and that it was Church Day - no shower, no church. I helped her undress. Once in the shower it took reminders to pick up the soap, use soap, wash this part and that part, here is the wash cloth, wash your face, turn off the water, push down, no the other way... Mom and Joe went to mass last night after stopping by the festival for a few minutes. I did not join them. And of course, there was IHOP afterwards with Joe, David and Rosaline, David's mom.

It was an unusually active week for Mom and she enjoyed the interaction. Unfortunately her nights were active as well. At 3:00 a.m. one morning, I got to Mom's room and she was dressed and putting her shoes on. It took some yawning and grogginess on my part to convince her that it was not time to get up and I was going back to bed for a few hours so that I could go to work in the morning. I got her settled down without her shoes but still dressed. On another early A.M. I heard Mom yelling and got to the laundry room where she was standing in the open door to the garage yelling at someone.

And that's the way it is, as Mom would say. Perhaps if I took time throughout the week to make some notes here, I wouldn't have to publish the entire book at one time. Food for thought - when I have time to think. Love you all!!!

Goodnight - again

It is 8 p.m. Sunday night. Mom has been to bed twice. The first time at 5:30 after having cake and ice cream with us, Mom came out of her room in her pajamas to say good-night. In spite of our urging, encouraging and engaging her to stay up longer, she went to bed. At 7:30 Joe came to the bedroom where I was ironing, to say that Mom was up and dressed and sitting at the table waiting for breakfast. It took me about 30 minutes to get her back to bed by doing the things that we normally do before turning in like covering the birds, starting the dishwasher, setting up the coffee pot, putting the little dog in the kennel and checking on locked doors. Joe gave her night time pills and water. Finally she headed back to her room and was lying down fully dressed when I got in there. I made light of being confused after a short nap, thinking that it should be morning when she refused to put her pajamas on. With more cajoling, I got her out of her slacks, into badly needed clean panties and Poise pad and her pajama bottoms. When I handed her a wet wipe to wash her hands after handling the soiled items she began taking her pajamas off again and I instructed her how to use the wet wipe on her hands. Getting the pajama top on went better but as I bent over to help her get her pants off and on, I knew I needed to empty the waste basket a short ways from my nose. So I did that while trying to get her to take her socks off. The trash went but the socks stayed. Mom is in bed again.

When anyone asks how Mom is doing, I don't know what to tell them. More of the same? Not really. That could mean that today is no different from yesterday or last week. When I say she is getting worse, it doesn't fully express the day to day deterioration. That was my response to Deena again this week when she called and Deena gave an understandable answer of "we knew that was going to happen." I am sure she did not know the impact of those words until she spoke to Mom on the phone that day. The tired side of me wants to say "welcome to our world" but the daughter and sister side of me knows the moment of grief she must have felt.

When I can sit with Mom and do her nails before church on Saturday at 3 and at IHOP at 7 she tells us about the "lady" who did her nails, we know she is worse.

When she can be downright cruel and on the verge of abusive to Chi Chi, Stacey and David's little black dog that they dropped off her on Friday before they drove to Tulsa for a wedding, we know she is worse.

And the next day as we leave for church, Mom asks where that cute little black dog came from and I tell her we are dog sitting for a friend, we know...

• When Mom puts creamer in her glass of water, we know...
• When I have to tell Mom which body parts to wash and to use soap, we know...
• When I find my shoes and other items from around the house hidden in Mom's room, we know....
• When I am cleaning feces off of her, the floor, the bathroom counter, washing her soiled clothes and sheets...
• When Mom goes to IHOP every week and meets the same people for the first time every week, we know ...
• When Becky takes her out for lunch and she throws the food across the table yelling "I'm not eating that", we know ...
• When Mom looks in the mirror and sees the "curls she was born with" and we see frizzy long hair and a resemblance to Einstein....
• When we are up too many nights because Mom is up or she is yelling and thrashing in her bed from a nightmare....

And we grieve.

AND we rejoice when Mom remembers the first few lines of the Lord's prayer

• And when Mom puts all of her jewelry on just to hang around the house
• And when she taps her foot to the songs on the country legend station in the car
• And when Mom looks the menu over carefully and orders strawberry pancakes - again
• And when I put her to bed and she calls me sweetheart - like she knows I belong to her somehow.

IMAGINATION STATION?

Let's see, yesterday I got a call from Becky saying that she had taken Mom to Golden Corral for lunch and she had tried to pay with some of the coin collection. When I got home, I asked her about it and she totally denied it. When Becky "reminded" her, she admitted that she had. We had more than a 30 minute inane tug of war about how she can't spend those coins, she has to give them to me (I have confiscated what I could find). Mom refused saying among other things that Dom had given them to her and that he wanted the children to have them. She said that he would put money for the children and tell them to take it to buy what they needed. I played along and said that if they were in her room and she spent them, they were not in a safe place and I needed to put them away in a safe place for the children. She insisted that she did not have any coins. I let it go until Joe got home. After some dinner, Joe and I spoke briefly to her about the coins but got nowhere. Mom went to her room and Joe went to start the dishwasher. Moments later he yelled for me and by the time I got there he had Mom off of the floor with a bleeding arm. She checked out okay so I bandaged her forearm where she had scraped some skin off and took the occasion to search in some places in her room while talking about keeping the coins safe for the children. Did not find anything. She is good! Today she explained to Becky that she was chasing someone out of her room and Heidi got under her feet causing her to fall. Okay, there was no one in her room and Heidi was in her kennel asleep. Did she believe that and she was hallucinating or is that creative ad lib, make it up as she goes along part of her brain still active? Who knows? If nothing, she is entertaining!

I think I have most of the coins, but yesterday when we were in her room, Mom talked about a man who had been here and wanted to buy the coins. She talked about a woman who said she would take the coins to the bank. At this time, I have no idea if there is anything misssing, I never suspected there might be. The coins have been on a high shelf in Mom's closet since she got here. Again, where are these stories coming from? It is totally possible that Janice had a part in it if anything is missing and she may have involved someone else. I am learning more about Janice all the time. Mom's stories are just pieces of information with some wierd words tht we try to figure out. They could be pieces of truth. The unfortunate thing is that there really might be some coins missing and Mom may have given them away because I kept them in the closet instead of a safe deposit box or something. Now I have to figure out how to keep them safe for the children. Hmmm

Life as We Know It!

You know, I just don't know where to start sometimes. I could say more of the same because to us, it is. But from here we see the deterioration and adapt to whatever is going on. Last Tuesday morning about 3, I must have slept through the noise on the monitor because I woke to the dogs barking and the kitchen light on. As I headed for the kitchen through the patio room, I glimpsed something to the let and it was Mom headed out the back door in her bra and panties. Another early morning, I heard her up and went in to find her laying crosswise on her bed on her tummy reaching down and under her bed.

Last Saturday Mom absolutely refused to get a shower while Becky was here to help her. She even suggested to Becky that they go in and turn on the water and just say that she had a shower. I was in Alabama on the phone to Mom telling her to take a shower. She totally agreed while she was on the phone talking to someone telling her to shower but when she hung up the conversation never happened. Joe reports that after Becky left, Mom went to take a shower but he actually had no proof that she did so, not checking the shower or soap to see if it was wet. He took her to church anyway! Unfortunately Joseph has no sense of smell, so he does not notice when she needs to shower or change her underwear and pad.

I have searched her room on numerous occasions to locate parts of the coin collection she has been dismantling and jewelry that I want to put away before she throws it away. She is GOOD at hiding stuff! Today I went to her room to tell her I was going to the grocery store and found her sitting on the foot board of the bed looking disheveled and overheated with a metal box of coin collection beside her. She reported, upon my questioning her, that she was getting something out of the box so that she would have some money. Within a few minutes, Joe and I had confiscated three metal boxes from her room and I had given her a lecture about the coins were a collection, not money to spend and that I would put it in a safe place. Mom did not argue with me, but pouted for a few minutes and then we talked about what I should buy at the store.

The most noticeable change lately is her language. I know that I have been telling you that she has had difficulty but lately, she has days when her verbalization is just gobbly gook! Joe was standing at the counter and she told him he didn't have his lights on. When she is telling me or asking me something, she is saying words that aren't even words and not even close to a word that I can try to figure out. But then she will have a day when she has many moments of total lucidity and her words are quite fine for the most part.

And, for two weeks at IHOP now, she has had blueberry pancakes instead of strawberry! Ever since coming to live here, Mom has hated blueberries!

Mom has had restless nights and restless days with auditory and visual hallucinations. Kids running through the house during the day when only Becky is here. A young boy in her room who begins to cry when she makes him leave. Some ladies talking in the corner of her room during the night planning to take her walker.

We go with the flow and are so very thankful to God for the opportunity to experience this with her. Julie and Joe are so good with her! The talk to her and treat her as though nothing has changed over the last year or two and they make her feel special. I on the other hand, make her wash her hands with baby wipes all of the time, make her shower and wear clean clothes, scold her for picking at her skin and having open sores everywhere. It works!! for the most part...

More of the Same

Bra shopping. Mom and I went bra shopping today. I took her to Lane Bryant only because on Labor Day, I figured it would be less busy than most other retail stores in town. I was right. We got personal assistance and Mom got two new bras. The outing was strenuous in 98 degree heat so we took the long way home when Mom mentioned that she could sit in the car all day in front of the air conditioning vent. We made a side trip to Sonic to get a Strawberry Creme Slush. After a few sips she decided she needed to go home and crawl under the covers for a nap because she was cold. So she did. But not before finishing that creme slush!

It has been a typical week for her. Mom was sick one day last week but I am sure it was because she choked on a large bite of her triple decker peanut butter and jelly sandwich at breakfast. She vomited and complained that it felt like something was stuck down in her chest. After resting all day and eating light, she was fine.

We are still talking about getting her hair cut. She is still saying no.

Mom is giving her jewelry to Becky and Becky brings it back the next day and puts it in my bedroom.

Yep, more of the same. Thank goodness! I know there can be trauma and drama any time but there wasn't any this week.

Julie and I are leaving on Friday morning to go to Alabama to see Elsie, Eli and Erin. We won't be back until Monday. It will be just Joe and Mom for several days. They do great together. He keeps her fairly safe and healthy - neither one can really be left alone for too long, but together, they do okay. He takes her to the grocery store, to church and out to eat. Joe is still her favorite of course. He doesn't notice if she is in clean clothes or smells okay and she doesn't notice or care about how he looks or smells! They just give each other a hard time and get along great.

I have to go now to take Levi and Micah home after a swim in the pool and then it will be time to put Mom to bed. I hope you all had a Happy Labor Day!

Long Time No...?

I know I haven't been very consistent at this lately. Energy and time are the enemy. I have been working late and on weekends being one staff person short. Here at home on the weekends, there have been new flooring projects, mowing, cleaning, etc. that are getting done when I am not at the office.

The news about Mom though, is that there isn't any real news. At least not to us. We see her gradually slip away everyday. Here are a few things that we have observed and experienced lately within the past week or two.

• after David and Sherianne were here, Mom had another seizure and we have been seeing more deterioration
• changing sleep patterns
• coming to the table at 9 p.m. and asking for breakfast
• not getting up until noon
• having more sleep time than awake time throughout the day
• a tomato sandwich is something she has never had
• Stacey staying with her on Thursday while the caregiver went to an appointment and she had never met her before
• up at 1:00 in the morning at the kitchen table - confused and agitated
• told the caregiver the next day that she was afraid to go to sleep because there were some women and kids in her room talking about taking her walker
• agitated yesterday because there were kids running through the house making noise
• asks me everyday when I come home from church if we are going to church
• not changing her poise pad or underwear in DAYS (caregiver and I are going to work on that one in spite of Mom)
• this week she is sleeping under the covers
• communication with her is very simple and direct - long sentences or not talking directly to her are either lost or ignored for lack of grasping it
• Mom met my brother Lou last weekend
• she would eat only ice cream, Nonni's and peanut butter and jelly sandwiches if we let her
• and it isn't always easy to get her to eat anything else

That is a sample of who Mom is today. She still will not get her hair cut and is very proud of the curls that "my grandma gave me", not seeing the bushy, fly away long hair that she really has. I am quite sure that she doesn't know who I am 95% of the time but she knows we belong here and I have a lot of rules and I take her to church. Rules like changing her underwear, not feeding the dog her food, washing her hands after she has used the bathroom and played with the dogs, ice cream and biscotti are not a nutritious meal...

While Lou was here and talking about Ohio, Mom stated once again (almost every day - that she remembers!) that she wanted to go back there. I advised her, as I have before, that she can go back any time she wants, she is not a prisoner here, there are several nice nursing homes there where she would have to live. She came back with "well if they're so nice, why don't you live in them?" So, she is still being held prisoner here in Texas. I don't think it would do any good to pursue that hostage theory and demand a ransom from someone? I didn't think so.

Now just a note about her captors: Joe and Julie are doing great. Julie is such a HUGE help with Mom in support of me. Their lives are only disrupted by the complications in mine, like working late and having a four day headache last week. I thought is was a virus, a side effect of a new medication I was taking, a random blood clot from wrecking my van two weeks earlier (look, it made a lot of sense after hurting for 3 days) or a sinus infection. Finally, on Friday I had Joe drive me to the doctor who diagnosed a migraine. I have never had a migraine in my life! If I had, I would have remembered the axe in my head! A pain shot in her office and I was human again. The hangover lasted a couple days, but this was a reminder to stay healthy. On Tuesday night after I barely drove myself home, I lay on the futon in the patio room and I swear, it made total sense when I prayed, Lord I can't die until someone gets home because there is no one here to take care of Mom.

So there you have it. I hope you feel caught up on our news and can almost imagine being here. Or even wish you were here! Not so much, huh. Oh well! Keep us in your thoughts and prayers. I am off to do all of the mowing, laundry and cleaning before time for church. We get to go to IHOP again! Love you all!!

Guest Blogger Insight

Today I opened an e-mail from David who visited here with Sheriann and whom I invited to guest blog. He was having trouble logging into the site and put his insights about the visit into the e-mail to cut and paste. Which I have done, so appreciatively. Thank-you, David for the visit and the post. I love you.

FROM DAVID:
Been trying to log on and write on the blog but can't get in. So I've decided to share my thoughts here and hope you can transpose it to the blog.

Sheriann and I had the recent pleasure of spending part of our vacation with Mom, Cheryl, Joe and family Having just become caregivers for my 87 year old father we were excited about comparing notes and getting pointers from Cheryl and Joe, who have been caring for Mom for a number of years now in her battle with Alzheimers. What we learned was how blest we are that although Dad's eyesight is very bad and his body is beginning to fail him his mind is still very sharp and he remains alert and witty. Being a regular reader of "The Butterfly Net" I thought I had a pretty good idea of what Cheryl was dealing with day in and day out. But I wasn't prepared for the moment to moment change in Mom's personality. When she was pleasant it was very nice, but that could turn to mean and nasty in a split second.

Cheryl has asked me to share some of the "fun" stories from our visit with Mom. When we arrived I could see a hint of recognition in Mom's eye's but it was also obvious she had no idea who I was. After giving her a big hug she said, "I remember you, we were classmates." Then, as I put my hand on Sheriann's shoulder to introduce her to Mom, she said "She's way too young for you, you shouldn't be hugging her."At that point I didn't know what to say but she had instantly won Sheriann over. Sheri then got the grand tour of Mom's room as I visited with Joe. Mom showed her the butterflies and various "secret" papers she had stashed throughout the room. As well as all of her craft items. She rummaged through her drawers on several occasions whispering, " I have to hide things because THEY are taking my stuff." We could tell that Mom really liked visiting with us and especially liked the attention she was getting. She would touch my arm or rub my back every time we passed and I knew she felt a connection with me and was struggling to remember what it was. It was at these times that I realized how awful Alzheimer's is, not just for Mom , but for all of us that love and miss her!

Cheryl and Julie came home from work and we made plans to go to dinner with Stacey and her family. It was at this time I saw how quickly Mom's personality could change. When we arrived at the restaurant, Stacey, David and the kids were already seated at the table. When she saw them seated there she turned and tried to sit at a different table. She became sullen and very difficult to deal with throughout dinner. Casting many a glare at Levi and Micah all evening long. I had heard how mean she could treat Stacey and her family but really wasn't prepared to see it firsthand. I was both shocked and saddened! Also, knowing how much this must hurt them, I was impressed with how well the kids handle Mom's bitterness.. Stacey and David have done a wonderful job dealing with the situation and are a great source of strength and support for Cheryl and Joe. Love ya Stace!

Another observation we made is how if you don't really know Mom's background and are conversing with her you might think she is perfectly normal. Sheriann had this experience. Her and Mom sat at the dining room table talking for quite a while. After Mom went into her room to rest Sheri came out and asked Cheryl how long Mom had taught school. Mom had told her a long tale of her many years teaching high school and all the kids she had had in her classrooms back in Ohio. Sheri was amazed at how much Mom remembered until Cheryl told her Mom had never been a teacher.

In the short amount of time we were there we saw Mom's mood swing many times. She even became a little confused and agitated at IHOP after Church Saturday evening (the highlight of our trip!). But the one thing I noticed was that she never became cross or mean to Julie. Julie is so patient and helpful to Mom. Never getting frustrated or short. Always there to get things for Grandma when she asks. What a source of Pride and Joy for Cheryl and Joe! Love you too, Julie! Gonna send you some snow this winter!

Can't end without telling about Becky (Mom's Energizer Bunny caregiver during the week). She bounces around getting things done for Cheryl and taking care of Mom with a smile on her face and a song in her heart. Even though Mom says, "I don't know why she's aways around. I don't like her." and, "That mean woman tried to drag me out of the car at the nursing home." This was the incident when Mom couldn't find her crafts to pass out at the home and refused to go in. Once again claiming , "Somebody took them from my room."

We had a great time visiting and spending time with Mom. Brought back many crafts and gifts which Mom insisted we take. Passed the crafts out to the people in my sisters hi-rise apartment building. All the time knowing that "someone" is being accused of stealing them. Many more stories I could share with you but realized I've turned this into a book already and need to cut it short.

In closing I would like to say "Thank you Cheryl and Joe for sharing your blessings with us and still accepting me as part of your family." The world may idolize a whack-O like Michael Jackson, but in my mind it's people like you that are the real "Superstars".

Much LOVE and many PRAYERS,
David

Moments of Joy in the Jumble

You guessed it - another Saturday night. We have been to church and IHOP. It has been a very busy couple of weeks around our house and there has not been time to sit down here to note some things. David and Sherriann were here visiting and there a couple of humorous stories to tell about that. I have asked David to be a guest blogger to give you his perspective on their visit in regards to Mom. Hopefully we will hear from him.

Other than that, there has been pretty much the usual chaos with all of us and others, coming and going - floors still being done, new caregiver, working late, taking days off in the middle of the week to go sightseeing, taking dog to the vet - a lot of things that disrupt whatever continuity we are sometimes able to achieve. For the most part, it would appear that Mom has been unaffected by it. I can say that maybe we are just seeing more of the same, but "more" of it. Her sleep patterns are different and she continues to find ways to assert her independence and right/need to control and choose. Mom continues to choose to sleep on top of the covers in spite of fresh clean sheets with lily of the valley print. She continues to hide things in her room and if fact, most of the stuff that have been on shelves in her closet are now put away elsewhere. She has filled her dresser drawers with everything and goes on and on about people going into her room and taking her stuff. In reality, she does not remember that she hid it or where she hid it.

Mom's day to day ability to communicate has drastically decreased. She tries to be involved sometimes and contribute to dialogue but her contribution is almost always disconnected from what is going on. It is more likely, like at dinner or at home, that she is silent and looks around the table as though she is eating with strangers. Tonight at church, Mom greeted a lady sitting near where we sit and spoke loudly to her and insisted on hugging her. I worked at redirecting her and getting her to our pew, saying "shhh" with my finger to my lips. She turned, still being friendly and loud, put her finger to her lips and said she did not want to "shhh". We finally got her settled in but at the beginning of mass during the greeting, she did pretty much the same thing with everyone around her. Going to church is the highlight of her week and she asks every day when I get home, if we are going to church.

Mom has a terrible wheeeez. She refuses the medication and she refuses to give some good coughs and get the gunk out. I will take her to the doctor next week for a regular 3 month followup and I know that the doctor is going to tell her the same thing we do - cough! The wheeez is rather dramatized at times - attention seeking. The congestion is not in her lungs as much as it is just in her throat and vocal chords so that she can speak with a raspy voice. And she does, of course, whenever she thinks it will get attention. Mom loves attention. If it isn't about her it is not worth being part of and she goes to bed.

Becky, our new Energizer Bunny caregiver took Mom to the nursing home to distribute her crafts. Mom loved it and I understand that they loved her. She had an appointment to go back at 2:00 the following day because someone there had something to give to her. In the meantime, mom came home and put her bag of crafts away. The next day when Becky tried to get her out to go back to the nursing home, mom could not find her bag and was certain that "someone" had been in her room and taken it. Somehow, Becky got her into the car anyway and they drove to the nursing home. Mom absolutely refused to get out of the car! Urging, begging, bargaining and promise of ice cream fell flat. Later, she had stories about how Becky tried to drag her from the car. Becky's laughing response when I told her was that she hadn't had her but whooped in a long time and she sure didn't need to get it whooped by a little old lady by trying to drag her out of a car!

We are so blessed, aren't we? With so much lost there are so many other things to rejoice over - like Mom saying the Lord's Prayer from start to finish in church tonight! And her odd but so very important phone conversations with Deena each week as I listen in on speaker phone! Thank you all for your love and support!

Monday Musings

Have I mentioned that things have been very chaotic around here and how well Mom is doing in it all? We didn't even make it to church and IHOP this week. Erin and Elsie were here for two weeks which meant not just 2 extra people around, but Stacey and family too. I was in Corpus Christi most of last week and in the midst of all that, there have been workmen around on the weekends putting new flooring down. That has meant that throughout the week, all of the furniture and stuff from the patio room and kitchen is spread throughout the rest of the rooms. The game table is in the living room behind the big sofa. The kitchen table, 4 chairs, bar stools, refrigerator, etc. are in the remainder of the living room. The turtle tank, extra TV and Wii are in the Memory room. Well, you get the picture. In spite of all of this, Mom is taking it all in stride and has yet to find the refrigerator! She thinks we have hidden it from her. In addition to that, we are using a different caregiver. But Mom has been upbeat and agreeable for the most part. She had another nightmare last night and bolted out of the bedroom about 9:00 before the rest of us went to bed.

Becky spent the day with her today. You may remember that Becky filled in for Janice a few weeks ago. I have interviewed someone else and will, by the end of the week, figure out who to go with. I am convinced that it has to be someone who will be can work with Mom to get her out of bed, involved in conversation and activities, even outside the house. Mom can be stubborn, if you haven't picked up on that, but she usually responds to humorous, encouraging, inviting, requests. Like it is her idea somehow, maybe. Anyway, she had a good day and was even awake and sitting at the table being chatty when I got home.

Well, Erin and Elsie are at home in Alabama. We have a few more weekends of floor work left - 3 bathrooms, actually. So much for a Monday. I'll be keeping you posted, of course.

IN anOTHER's WORDS

I have intended to write here all week while I was in Corpus Christi for a work conference. I flew there early Tuesday morning and got home today, Friday, at lunch time. I really have nothing to cover over the past week except to say that I had a marvelous and restful week attending workshops by day and walking the beach along the Gulf of Mexico at night with the wind and seagulls and sound of the surf!

As I have already mentioned, Erin and Elsie have been visiting. My trip unfortunately fell during this time, so I left everyone here to manage on their own. Janice was here on Monday and Tuesday but, sadly, we have parted ways. My task now is to find another care giver and I will keep you posted on that. But for now, I think this cut and paste from Erin's "Beaver Family Blog" is representative of the week in my absence. Following is a sample of what I was missing in Erin's words.

"Last weekend I made the difficult decision to cut my trip to Texas short. I'm enjoying getting to see my family and spend time with old friends, but I'm still seeing way too much of the inside of Julie's room, where I'm staying. It used to be my room, so I've already gotten my fill of these walls, and yet, here I am...I know she thinks she means well, but my Alzheimer's-stricken grandmother who lives with my parents has gotten to be unbearable and the situation has deteriorated as I've been here.

At first, she would hear Elsie fuss or cry or make noise and she would come out of her room to investigate. She wanted to hold her and even tried to pick her up more than once while Elsie was still strapped into her swing. Then, one morning, right after Mom left for work, Elsie was fussing and Grandma just opened the door and came into my room. She wanted to take the baby and "bounce her." It took about 15 minutes for her to leave so that I could feed Elsie. That night, with Mom's supervision (it was making me so crazy I was either sitting on the edge of the couch or pacing in the kitchen), Grandma rocked Elsie, at first singing "Rock-a-bye, baby, all the day long" loudly in her ear, and then singing along to a CD of church hymns that Mom put on. It was sweet, and I know Grandma enjoyed the time, but she kept repositioning Elsie roughly and it took everything I had to keep from grabbing my baby and running away.

Well, Grandma didn't come near my room again, but I guess it was the weekend, because come Monday morning, Grandma just walked in (I had taken to locking the door, but has slacked off over the weekend when she wasn't interested) when we were sleeping. Before, Grandma had been responding to Elsie's noises, but this time she just had the baby on the brain because Elsie was fast asleep and Grandma just wanted to hold her, she said. I told her she needed to leave, but she just stood by the bassinet watching Elsie. I just wanted to scream but was able to persuade her to leave.

And then yesterday, Elsie had gas and we were trying to work it out, I heard Grandma try both doors to the bedroom (the other door is through the bathroom), and when she found they were locked, for the first time finally knocked. I essentially told her to go away, but in a nice granddaughterly fashion. A few minutes later she brushed the door with her hand and spoke to me through the door, letting me know that she was standing outside the door if I needed her. I told her thank you, but that we were doing okay.

Later that night, when Dad was home from work, and Elsie was all swaddled and ready for bed, a calm and content little burrito, Grandma wanted to hold her. I let her, but it didn't last long because she started singing loudly in Elsie's ear again, and then decided that Elsie's feet needed to be free, so she started tugging at the swaddling, which of course agitated the baby, but to Grandma, that was proof that the blanket was too tight. Then, when that didn't stop Elsie from crying, she started positioning roughly again. I shot Dad a look (because, to me, it was his fault I had let Grandma hold Elsie again--though I think I misunderstood) and thankfully, he rescued my baby and gave her back to me.Just a minute ago, Elsie was fussing and Grandma came into the bathroom. I opened the bedroom door, said, "No," emptied my Chik-Fil-A cup into the sink, and came back into the bedroom and closed the door. Julie persuaded her to leave the bathroom.Just recounting these events is stressing me out. I'm feeling dizzy, like I just may be getting sick and I just really want to be home in my own bed."

Erin has such a gift for expressing herself. I love to read her blog! If you are reading it also, here is my shameless plug for you to go to the Chik-Fil-A website to vote for the cutest kid dressed as a cow!

Greatgrandmother on Patrol

Has it been another week already? It has been an unusual week for all of us because Erin and 9 week old Elsie have been here visiting. Eli went home to be back to work, but we have been enjoying daughter and newest granddaughter. Janice has still been coming over everyday so that "the girls" can get out and do stuff and not have to care for Mom. Julie took the week off from work to hang out with her sisters, nephew and nieces. For the most part, Mom has been enchanted by the baby but nonetheless vocal about things because she had her own "sons and daughters." We pat her too hard, she cries too much and we should take her to the doctor, she wants a bottle, she wants to go home, she is going to walk any day now, that swing is going to make her dizzy...you get the gist. Anyway, there have been a lot of people around here every day and every night and Mom is often confused and often neglected, I'm afraid.

We did have a couple incidents early in the week, one of which is work mention. I provided Janice with a calendar/record book in order to document Mom's activities throughout the day in order to know what her day looks like while I am gone. I did this for many reasons, a few of which are so that I would know how much Mom is sleeping, what she is eating or not eating and what her activities are as Janice would not know what we would perceive as "out of the ordinary." On the first day of record keeping, I read that Mom had refused some medication, walked to the mailbox, gone through the mail and retrieved what was addressed to her, and had only Nonni's and ice cream throughout the day, refusing anything else. I had a talk with Mom, then about her health and safety saying that it was not safe for her to walk to the mailbox without her walker in 105 degree heat. It was not healthy for her to refuse her medication and nutritious lunch to drink coffee and eat Nonni's and ice cream throughout the day. Nor was it healthy, mentally to sleep all day. Needless to say, Mom did not appreciate the sentiment and became defensive, telling Joe about it when he got home. She even included tears. By the next day all - and I do mean all, was forgotten. I have had to tell Janice that it may require physical re-direction and locked doors to fumble with as well as a phone call to me to be the bad guy.

And the coin collection! Mom got David, with my nod to him that it was okay, to get the boxes and books of coin collections down from the top shelf in the closet. I thought she just wanted to be reassured that it was there and touching it made it real. Mom has mentioned it many times, but we kept them out of her reach. Lately, she has been obsessed by it, so on that day, I thought "what's the harm?" So, you know I am leading up to something - the coin collection has been taken out of the original settings and put in tubes and tubs and has been reduced to about $17.50. It is still coin collection. Nothing is missing as far as I can tell, and I did check her pocketful of quarters at IHOP last night. It kept Mom busy for the better part of an afternoon, going through the coins, sorting, stacking, counting. An afternoon well spent if she enjoyed it and I'll deal with the "collection" part of it later.

You know I could go on about a lot of other piddly other things, but mostly I want you to know that Mom is well, there have been no crises for a long time and when she wants to, can enjoy her life. And that is our story this week.

Sticky Notes and Mysteries

Another week of sticky notes has gone by. I did find one that I had misplaced, though and I put it on top to tell you about it. Mom's diary. We girls found it when we cleaned out the attic in preparation of the yard sale and move a couple of years ago. We glanced at it with her a little but left it at that. It turned up about two weeks ago when Mom came out of her room with it to show me what she had found. She and I sat and read every word in it and wondered together about the person who had written in the book. Mom speculated that it must be someone she knew, probably a family member and that whoever it was lived in northern Ohio because the girl who wrote it spent a lot of time out of school because of snow.

Over the years I have had hints of who Mom was before she was "Mom". Collecting hints and information along the way and now living with her as an adult, I still have to ask "who was she?" And who is this angry, negative, defensive, stubborn woman? What are the demons that drive her and cause her restlessness even in sleep?

I know that some of you out there know. And do I need to know it all? I want to know it all. I want to understand. I want in some way to help her find peace in this life. She herself has lost active memories and except for the odd behaviors and nightmares, I have little to go on.

It is true that one of the side effects of the medication Mom takes is bad dreams and Alzheimer's ' patients do become confused and disoriented which causes aggressiveness and stubbornness.

But I am referring to a past that I believe troubles her today. I base this on those observations, unanswered questions and hints to which I referred earlier. Hints such as her diary, little information about a previous marriage which Mom has never mentioned and sketchy details about the person, an accident, quitting school, the car she got, etc. And why was she going to "break both" of my legs when I wanted to get married? Why did she sit in the basement of the church and refuse to participate when Deena got married? Why has Mom always been so negative, even about people she didn't even know? Why is she shouting in her dreams that she is going to get a gun and shoot someone? Why does she continue to dream/hallucinate about a baby falling? And much, much more.

No, I did not need to know. Not until now. I am living with and caring for a stranger in many ways. But unlike "staff" in this position, I am not objective. I hope that we can provide the best care and we can do that because we know how to reassure and calm a person we "know" and love.

And yes, I may be over dramatizing all of this. Maybe there is no mystery, hidden clue or hushed information. Our day to day journey through this goes on and unanswered questions will remain at the bottom of the sticky note pile while I collect more to share here with you. And there are more! I will get to them later along with some notes from her diary maybe.