And the days slip away. Mom has been going through things in her room just really trying to connect things and remember. It isn't working and more memories are slipping away. We look at pictures - the ones of her 70th birthday party. Pictures of recent year Ashley reunions. We came across some pictures that were taken while Deena and I were there for her 70th birthday when we all - mom, Bonnie, Deena and I were going through some things in the attic of her house. Mom had no memory yesterday, of the house, let alone the attic. Mom frequently goes through her treasured wooden brown box of recipes - sorting them and trying to remember. Mom enjoys getting mail and carries it around with her but does not know who it is from. I think it just means a lot to her that there are people somewhere to whom she is important. Little things escape her too. This morning she poured coffee creamer into her glass of water. Joe had a great time with her on that one! When I got home from work, Mom was sitting at her spot at the table going through her bible and all of the cards and pieces of paper - she handed me a recipe for corn chowder that she wanted to make sure I had.

Over dinner I often initiate small memory challenging games like nursery rhymes, songs and names of people and things. Saturday at IHOP she knew Joe's name and her own, but had no idea what mine was and guessed at several very nice names - none of them mine, but nice all the same. I think she settled on Karen for me. Dinnertime banter - always done in a light, humorous spirit. And on the way home, how blessed we were to be loudly singing together to one of the CD's and making up words as we went along!

As you know, I have been trying to get mom to get her hair cut. I have also been trying for more than a week to get her to let me wash her hair also. Well! On Sunday morning, I suggested that I wash her hair before the day got crazy busy. AND she let me know that she wanted to get it cut and they could wash it there! This was at 9:00 in the morning and of course "walk-in" places don't open until noon on Sundays. So, guess where we were at 11:59 that morning? And she got a great haircut! She even looks like the picture on this blog now! You know, we go with the flow and some days it flows faster than others!

So, that's our story today! I so appreciate your comments and prayers and Mom enjoys your mail. (small hint) More of our story to come!

A Red Christmas Sweatshirt Day

Christmas Day. Not a creature is stirring...

It has been a very different Christmas week here for all of us. Mom has done unusually well with the disruption, chaos and moment to moment planning. Yesterday, Christmas Eve, Erin flew back to Alabama and Stacey and David left for Oklahoma to be with his family. We did our traditional Christmas morning ritual on Tuesday night after a very nontraditional dinner of crock pot corn chowder. Mom sat with all of us and opened her gifts with everyone else, never questioning the oddness of it. On Wednesday morning Stacey and the kids came by to see Erin off. Not having had breakfast yet, Levi sat at the counter eating a bowl of Cheerios. Erin had not really witnessed her grandma's disdain for Levi but got a hint of it that morning when Mom, lips pursed and eyebrows lowered, picked up her two biscotti in one hand and a full cup of coffee in the other and tried to stand up. I saw what was going on and blocked her way from the table and advised her as I pried the cup from her hand, that she could eat her snack in the same room as Levi or she could explain to Erin why she was leaving. Mom made like she just needed to stretch her legs and sat back down. Levi whispered a "thank-you" and as everyone left for their various destinations, Levi, Micah and Stacey each went to their Grandma and gave her an unacknowledged hug and kiss good-bye.

We had planned to go to one of the Christmas Eve services but for many exhaustive reasons Joe and I decided to go to church on Christmas morning. When I told Mom this, she was okay and changed from the red Christmas sweatshirt and red sweatpants that she had been wearing all day, into her pajamas. This morning, she was up bright and early and back in her red Christmas sweatshirt and red sweatpants. She was even wearing the red Santa socks that I had put in the hamper. With kindness, I suggested some other "Christmas" outfits she could wear as I scraped yesterday"s lunch off of her sweatshirt. I mentioned that Joe was wearing a suit and that maybe she would like to dress up a little. At Mom's insistence that her clothes were not dirty, she had not worn them before, I was more blunt - she had worn them before and the shirt was dirty. Not only that but because she has bladder leakage, her pants were dirty as well. I put a clean outfit out for her and left her with a plea to please change her clothes. About 30 minutes later, Mom came out wearing, what else...the red sweatshirt and sweatpants, carrying one of those headbands with springy, funny, swaying Santa heads on it. At breakfast, she offered to let Julie wear them and I not-so-gently let them both know that the Santa heads were not going to church with us. In spite of my words to Joe about "picking your battles", I tried once again to get Mom to change her clothes but anything I said was met with stony silence. AND, on our way into church, one of the polite lady ushers greeted us and told Mom how nice she looked! So much for my credibility!

Back at home, Joe made pancakes and bacon for us and even had strawberries for hers. Better than IHOP! The stony silence was lifted - for both of us. And Christmas naps helped a lot too.

We did have a very blessed Christmas with all of our girls here talking, sharing, laughing. To be sure, a special moment for a parent. And I am sure that Mom had a glimmer of that feeling as she observed the interaction and busyness of this past week with everyone here. She remembered the melody - and the reason to wear a red Christmas sweatshirt!

Bridging the Gap

Unfortunately, Mom got pretty much ignored today as I was in and out doing some last minute Christmas errands and Joe has been in his office all day except for tending to our poor Haley who is three days out of surgery to repair the tendon in her right rear knee. Mom stayed at her end of the dining room table with all of her crafts and worked industriously and quietly. Julie was out as was Erin who drove to Waco with Stacey and kids in search of a Baylor polo shirt for Eli.

This evening as I held Haley on my lap while reading a book, mom came into the bedroom and sat on the sofa beside me to comfort Haley and to say that she had received more mail - Christmas cards. She could not remember who the mail was from except the one from "my David" with a picture. After she went to retrieve the new mail along with the ones she received the other day, we did the "who is it from" drill. I started with the one from Judy. Not a clue who that was, not even when I mentioned Joey. I told mom that Judy is her sister. Then I read the one from Dolly. Not a clue. I advised her that Dolly is Judy's sister. Puzzled look. Explanation: "Judy and Dolly are your sisters." "My sisters? Puzzled look. No connection.

I went to the card from David with a picture of him and Sherriann at their wedding holding Dominic, his new, first and only grandchild. Mom knew it was a picture of David and his new wife and their new son. Several simple explanations later about it being his grandson, "Pam's baby" - confusion - "Pam - your granddaughter in Ohio, Matthew, your grandson's sister - Matthew and Pam who lived down the street from you on Thayer Ave. - Pam had a baby" - NOTHING.

Then the card from Betty and Beth and trying to trigger something with "the family who lived in the house behind the mission where we used to go to church." AHA! Yes! Beth was at her birthday party!

The last card was from Ray and Becky (Joe's sister whom she has known since before I knew Joe). The card had a picture of a covered bridge on it. I asked her if the bridge looked familiar and Mom said yes, she knew the bridge. Not sure that she did, but by this time she was so confused she was agreeing with anything. But Mom did remember that she had a picture of a covered bridge that someone had painted and yes, I told her that Ray had painted the picture for her. No other glimmer, just the covered bridge.

And that's where we are today. She wants to send Christmas cards too, so I promised to work on that with her tomorrow. We also talked about getting up early to go to daily mass at St. Ann's. I'll let you know how that goes. THAT she'll probably remember and be up and dressed at 5:00! I did get a mention in about getting her hair cut - "no way." I'll keep trying.

More odds and ends

Well, Friday did arrive and Erin did get here. While Stacey and the kids and I were at the airport retrieving her, Mom used her "foam" crafts and made Erin a couple of things, including something that had "Baby Beaver" on it - with Joe's help to spell Beaver. Erin was generously kind and thankful for the gifts while getting a big hug.

Needless to say, there has been a lot of activity around the house with Stacey, David, Micah, Levi, Julie and her friends. To complicate things further, our routines have been disrupted by our dog Haley having surgery on a torn ligament in her knee on Friday morning. Mom accompanied us to the special vet hospital in Dallas to drop Haley off on Thursday and again this morning to pick her up. She has been very worried about Haley but she Mom was invited by her friends Margaret and Diann, to go driving Friday night to look at Christmas lights. This distracted her a bit. By the time they got home, Mom had had her ice cream and was exceedingly impressed by all the lights and decorations she had seen. She is still talking about it!

With all of the commotion around here, it was inevitable that the calm that we have been experiencing would would wane. Mom and Levi exchanged words today and Joe had to redirect her a number of times when she spoke sharply to the kids about silly things. I was able to get her out of the house tonight to go to church and then to, where else? IHOP. Joe stayed home with Haley, who has to be kept quiet, and all Mom could do was talk about whether Joe had eaten, maybe we should take him some dinner, why didn't he come to church?, we need to take him some food. Geeez!

I do hope that I can get a more recent picture of her on this site. But for now, just remember her how she looked this summer if you saw her or how she looks in the picture above. Right now she refuses to get her hair cut again and Joe teases her about looking like George Washington or Einstein. She has no idea who those people are but they must look pretty good if they look like her!

I really appreciate the feedback I get from those of you who read this once in awhile to see what we are up to. We are blessed by your love and concern and wish you could be more a part of her life these days. Distance and circumstances have not allowed that - but we love and miss you all!

Odds and Ends Report

Today's News:
Mom has suffered from a persistent runny nose since she got to Texas. Today she had a routine doctor appointment to check on her and her meds. Of course, today she was wheezing because she won't cough up the phlegm from the sinus drainage and frequently gets attention because her voice is hoarse. We just tell her to cough that stuff up and give her Mucinex twice a day. (She is reluctant to cough because she pees) We have tried numerous times at Dr. Birdwell's direction, to get her to use the nose spray but gave up on it when we could not coordinate our squeeze with her sniffing it in! So today as preventative measures, we went from the doctor's office to get chest x-rays. It took much simple explaining about having to get undressed again and "hugging" the machine and take a deep breath and hold still. But they got some good shots. I did hear by the end of the day that her chest is clear and no further treatment is needed except for having her use the nebulizer three times a day and taking a small dose of Claritin for the allergies.

Yesterday's News:
Mom received two Christmas cards in the mail yesterday. Joe had not given them to her so after supper I gave her the mail to open. Her vision is very bad so she had difficulty reading it, but Joe and I assisted, telling her who it was from. The first one was from sister Judy. I just told her it was from Judy and asked if she knew who that was. She did not. I tried to get her to think about it but nothing came. When I told her it was her sister, she immediately knew who I was talking about and went in to her Judy and Joey story. Cutting that a little short, I read the next card and signature to her - Dolly. When I asked if she knew who that was, she answered after some thought that "it must be one of the sisters." We then were able to talk about the other sibling's names. Talking about Dolly being "Olive" and Carl being Lloyd. She knew that was her father's name and said that her mother's middle name was Eileen. (was it?) When I asked her who CheChe was, she immediately knew it was Sheila. When I mentioned Richard, mom related it to Elaine and recognized when I referred to him as Uncle Dick. Little drills like this are common at our dinner table. Today we sang the Muffin man song because we were talking about what special name I should have for my next expected granddaughter. When she asked again when Erin would be her, I told her Friday. Mom laughingly complained that I tell her Friday every time she asks but Erin is still not here!

So that is how our week is going! "We" are happy and healthy. Mom confessed to me this morning that she prayed for snow! I suggested that if she wanted snow, she could go to Pennsylvania! Tomorrow mom goes to the podiatrist and that always makes her feel good! Her shoes fit better! And of course, Erin will be her on Friday!

Unchanged Melody

I want to talk to you today about the inconsistency of Mom's days. I may have given you the impression that she never knows her name or other daily details. Mom must have had some negative experiences with "imbeciles" in the past because for some time now, she has expressed to us that she is not an "imbecile." Wow, I had not heard that word for 50 years! Nevertheless, I do not want to give you the impression that she in any way resembles - her words - an imbecile, if you still remember that word and what it implies.

Yesterday was a good day. Last night at mass, mom recited almost all of the responses with only a few glitches, even The Lord's Prayer. And after church during our dinner at you-know-where, mom ordered her "butterfly" pancakes with strawberries. Joe laughed and was quick to inform her that they were "buttermilk" but it didn't matter, David, our usual waiter knew what she wanted. Mom also tried to join the conversation about the priest and other things. When it came time to leave a tip Mom took out Daddy's old wallet from her purse and said she had decided to use it instead as she withdrew $2.00. As we sat longer, Mom pulled out a zip up glasses case that was full of change, mostly quarters. Then she took the conversation to the coin collection in the top of the closet and talked about the white pennies and how she and daddy had started collecting the coins when I was little. That part is probably not factual, as I am fairly certain they did not have two pennies - white or otherwise - to rub together when I was little. I believe the coin stuff started later, like when Deena was little.

The point is, that some days, things click and some days they don't.

Let me go back a moment to singing. Mom loves music. Depending on her mood, I play an old time country music station on the radio or a great CD that Bonnie gave her that has the old songs like The Old Rugged Cross on it. She sings along and taps her toes! Sometimes she knows the words and sometimes she doesn't. But that does not keep her from singing! She said something some months ago that I think is very profound and descriptive of this time of her life. She said to me that she does not always remember the words, but she remembers the melody. She remembers about showering, but does not always remember the steps to it.

Mom remembers the melody of her life but the details are often lost. And each day can be a different melody!

Some days it's the nitty gritty - like clean underwear

If some of you have not taken a few minutes to familiarize yourselves with the signs, symptoms and stages of Alzheimer's, I have added a very brief and condensed list below.

Typical signs and symptoms of Alzheimer’s disease
…General confusion, disorientation to date, time or place
…Apathy, irritability, depression, anxiety
…Problems with language, math, abstract thinking, and judgment
…Personality changes with strange quirks or inappropriate behaviors
…Wandering, hiding objects, problems with eating and sleeping
…Late in the disease, paranoia and delusions may occur
…Toward the end, total loss of self, and inability to control bodily functions

By the middle stage of Alzheimer's, most victims no longer are aware that they don’t remember things or aren’t communicating coherently. This is fortunate for them. In a safe environment with good care and social contact, most Alzheimer’s patients seem relatively free of suffering. For their friends and relatives it’s a different story: the long steady decline of their loved one is painful to watch. The demands of Alzheimer’s care also take a toll, over the many years before inevitable death. Depression is more common among the caregivers of Alzheimer's patients than it is among the patients themselves.

I add this information in order to give you a core of reference for the odd behavior/s that I will continue to mention in the coming months.

Mom went yesterday to a Christmas lunch with her two caregivers, Margaret and Diann. Our friend Barbara, who is also Margaret's sister-in-law and Diann's sister, holds the lunch each December at a local Mexican Restaurant. Everyone is to bring a wrapped gift for a gift exchange. I had planned to meet them there, but as it turned out, could not get away from work. On Wednesday night I wrapped the gift I had purchased. On Thursday morning after I gave Mom her breakfast, I assisted her in getting dressed before Diann arrived. By the time she got here, I was coaxing mom to the kitchen where the gift was on the counter. I say coaxing because on the way our of her room, mom became distracted by all of her coloring stuff and crafts which were on the spare bed. Once in the kitchen, I had a small Christmas card that she had colored and I wanted her to write Merry Christmas on it and sign her name. It was a short sad moment when I realized she could not do it. Under my slow, but yet unaware direction, mom wrote "Mary C and some scribbling. When I encouraged her to sign her name, once again she wrote and M and some scribbling. I still did not put it together. When I advised her that maybe she should write it again and she tried to cover with something she thought was humorous, it began to occur to me. So I playfully asked her her name and she told me "it can be anything you want it to be." I told her to quit giving me a hard time and played "little girl, you look lost, I am a policeman, so tell me your name and I can help you." Mom pointed to what she had written and made the "M" sound and came out with "Margaret". I did not belabor the point but assured Diann that Mom had identification in her purse.

During her shower on Wednesday night, I got the water running at the right temperature and she got in. I left the room for a moment and when I returned she was doing something with the faucet handle. I tried to inquire if the water was too hot or too cold but she wanted to shut if off. I went along with it and told her how to do that. Then mom picked up the washcloth that was across the arm of the shower chair and already wet, and began washing. No soap, no water. Then she put it down and was ready to get out. I coaxed her into going back in and "rinsing off" but she was totally confused and disturbed.

So many things happen each day that we accommodate or go with the flow with. But the picture on this blog shows how mom was last year at this time. Since coming up with that picture (thank-you Stacey), I have been noticing all the ways that Mom is not that person this year. If you read more about the signs and symptoms of Alzheimer's, know that she has experienced 99% of them. Not all at the same time and not every day. But we still have not found many of the objects she has hidden. She frequently accuses us of taking her money and her clothes. And we have DAILY battles about her wearing clean underwear and changing her Poise pad frequently.

Please do not misunderstand. This is not about our accommodations. But I cannot tell you honestly how she is doing, without mentioning our involvement. When I say over the phone or to friends who ask, that she is doing fine, she really is doing fine. But in the back of my mind I am chuckling because I am thankful that mom has not lost her sense of humor and we can turn anything into a humorous, joyful moment. Thank you all for loving her and us. And don't forget to laugh. You know she is - except for that clean underwear thing!!

Attention Everyone!

Not much to report for an update on Mom. Joe is unemployed again, so Mom's "friends" are not coming everyday to color with her or do simple crafts. But when they are here, they make it a point to get her out of the house a couple times a week whether it's to the dollar store for coloring books or just running personal errands. They usually eat out somewhere too. They are braver than I am. The only time I get her out of the house to shop is when I know the stores will not be busy and we won't have to stand in line. Of course I am at work all day so we really don't get out that much. And as far as eating out...we keep our routine to avoid confusion and inappropriate behavior. We go to IHOP every Saturday night after church. At church we sit in the same front row and pray that people with children do not sit behind us. After church, we go across the street for dinner. Mom orders the same thing every week - 3 pancakes with strawberries. She likes to tell us she is going to order off of the menu and after looking it over, orders the pancakes. The same two people wait on us every week and frequently see us pull up and have water and coffee ready at "our" table by the time we get in. Taking mom to a busy, noisy restaurant where there are a lot of people and waiters moving quickly is just too much over stimulation and she becomes more and more confused. Mom does not have the ability to reason - that was gone a long time ago - and she frequently acts inappropriately with people. Like hugging the man in the elevator when he said good morning. Like wandering into the kitchen at the restaurant to hug the waiter. Like going up to every child to touch them and tell them about her butterflies. We try to strategically place ourselves between her and any opportunity she has to do any of this. The common thread to any of her behavior including limping frequently so she can tell people about her hip surgery, is that she needs the attention. It's all about her. Joe and I think it is her jealousy that drives her bad behavior toward Stacey, David and the kids. When I remember her in her younger days, wasn't she always like this? Through my aging adult eyes, many incidents, events and issues of the past involving my mom look quite different than they did through my eyes as a teen or young adult. And the answer is a definite "yes". So, I am saying that what I've heard from various people (maybe in seminars and training I've attended) could be true. Alzheimer's does not change behavior necessarily. But it removes the filters and judgement so the behaviors appear "inappropriate." I hope my kids are prepared for that one when they are caring for me!

A typical Sunday. Stacey, David and kids have gone. A quiet day of Joe and David watching football, Stacey and Micah making Pizzelles and other Christmas goodies in the kitchen and mom sitting at the end of the table coloring. "Pizzelles" is the key word today. You all know that our family has made them for years! All of us in the kitchen smelling anise and eating the broken ones. Remember the waffle iron that had to be held over the burner on the gas stove? The timing of the turn was crucial. In our house, it was a "Hail Mary" on one side and another after the flip of the long handled iron. The soft pizzelle was laid on a cloth on the round kitchen table and after cooling would be stacked in piles of 12. They would be hidden and brought out on a plate of goodies over the holidays when people visited. With the purchase of an electric iron, the event went more quickly but was no less a contribution to our holidays over the years. Now my daughters all have electric pizzelle irons. Today we made them here. For all but a few moments of engagement with Stacey, Mom ignored everyone but the dog. The exchange came when mom found the empty box to my iron on the floor by the front closet - near where she sits. She "trolled" into the kitchen and confronted Stacey about what she was doing. Stacey told her she was making pizzelles and invited her participation. Somewhere in there Stacey had to reassure mom that mom's iron was in the front closet. Mom insisted that it was not there, the box was empty. Stacey took her there and gently showed her that her iron was there AND in the box. Mom picked up her pizzelle iron and went back to face Stacey with direction that she was not to use her iron and then went to hide it in her room.

Bittersweet moments like this are common this Holiday Season. I think my sisters would agree that we each re-enact a number of Christmas memories and traditions that we grew up. All of them because Mom did them. Pizzelles, Biscotti, Braciola, "pocket cookies". Today, pieces of these times are part of her disconnected world but are not easily to be shared with us.

The "NET"

I promised to explain the Butterfly Net. I am not sure how dedicated Mom was to butterflies in her younger years but she is daily becoming an absolute fanatic about butterflies! They decorate everything, even her. The staff at the day care she used to go to called her "Butterfly."Her walker was decorated with butterflies. She wore butterfly necklaces and pins - the more the better at the same time. When people notice her butterflies (and they do), Mom has two different stories that change each time she tell them, about butterflies when she was a litte gir. That is the "Butterfly" part. The "NET?" All of you who love us and MOM. It is also My family. We are her net. My husband of 37 years who fully shares - except for the baths - in her care. Our 32 year old special needs daughter, Julie who lives with us and supports us in supporting mom, especially on the tough days. Our daughter, Stacey and her family who live close by and in spite of their grandmother's disdain for them, support us in ways too many ways to enumerate but keep me encouraged and sane. Our daughter, Erin who listens long distance to encourage me. Following is a paragraph from Joe - her son-in-law whose name she knows better than mine! It's his contribution to this effort:

When it became evident that Mom could no longer care for herself, we decided to put her in a home, our home in Texas. She does not like Texas and wants to go back to her life of independence (in Ohio).
Mom is generally ugly to her first grandaughter who lives near us and her first two greatgrandchildren. We sometimes worry about the long term effects of Mom's behaviors on people she is supposed to love. Yet, we believe in the Bible and honoring our mother, even if her mind faileth.
Mom still likes to go to Mass and generally behaves appropriately. She loves babies and children and people who comment on her buttterflies. We try to maintain a routine for her and be available to her 24/7. Most times she is a happy woman in her own world. She loves to tell stories and some of them are mostly true. I intend to do the right things for Mom. So she will be in our home until we can no longer meet her need for health and safety.
Cheryl's comment: And he is my "net."

I don't know your name but I know you belong to me.

Okay, I am still at it. Will "tweak" this and become more familiar with the tricks this weekend. In the meantime, my main purpose is to talk about Mom here. If you are not familiar with Alzheimer's yet, I really hope that you will take a few minutes to go to http://alzheimers.about.com/ or some other site to learn more about it. You will learn about the risk factors and the stages of Alzheimer's. It will help you see my mom as we do. There are seven stages of Alzheimer's. Mom has characteristics of a strong 6. I'll go into that at another time.

In the meantime, I want you to know that she is very healthy. No visits to emergency rooms or doctors for quite some time! Mom is here at the house during the day with one of two different caregivers we hire to play with her and take her out to lunch, Wal-Mart and dollar stores during the week. She thinks they are her friends who come to spend time with her and hang out. They make sure she is safe and nourished. Yes, they sit with her most of the day and color in her books with her or do some other simple craft that we shop for. On nice days they sit outside in the gazebo or on the swing. Mom cannot for the life of her remember their names! We have tried association, putting their name on a piece of paper in her pocket and writing it down by her breakfast. They don't take it personally because they know that she does not know my name either! Mom is quite content most days. On those days she is not, I will surely describe her differently to you! For tonight, after dinner she and I worked on some Christmas angel coloring projects before I got her to the shower and into bed. Oh! I forgot to tell you about the title of this blog! I'll save that for another day. Goodnight!

I can explain

This is my very first attempt at anything like this and have even suggested that people I know must be very egotistical to create their own blog or web site - as if the world wants to know their business! However, I have reconsidered this as of late and have considered that it might be therapeutic for me as well as an excellent way for people who have known and loved my mom over the years to share the life she has now. Many people call to check on her and I can easily share the struggles and crises. But you are all missing out on the day to day laughs and simple acceptance that we have come to know as a part of her life here. This is my attempt to tell you about her journey through dementia/Alzheimer's with love,humor and a deep faith that the Lord is blessing us abundantly in so very many ways! I hope you will join us once in awhile by logging on once in awhile. Remember, I am a beginner and my daughters Stacey and Erin are my consultants as I build this Blog. So please laugh with me rather than at me and come back for more.