Two Very Different Christmas'

Susan has not had the Christmas spirit this year; no, in fact, this year her brain has found it hard to retain even the fact that it is the Christmas season! The other day I heard her talking with her favorite nurse, who was making her weekly visit to Susan. Susan was complaining about the weather and wondering why it was so cold. The nurse reminded her that it was winter, to which Susan acted surprised. “What, winter already?” she questioned. There they sat together on the couch beside the Christmas tree as the nurse took the conversation a step further. “What month is it, Susan?” “May? August? I don’t know. What month is it?” Susan stumbled in her own thoughts. “Look around this room and tell me if you can figure out what month it is.” The nurse suggested. Susan looked drearily around the room, unfocused, before she gave up and told the nurse she didn’t know. Eventually the nurse pointed at the Christmas tree brightly twinkling nearby as if it were flashing clues at Susan. “Oh! December? December already?”

It is hard to watch her decline, yet the facts are undeniably there in front of us each and every day, not allowing us to forget. Sometimes I don’t even realize how much she is dwindling until I read my own journal or think of things she was able to do such a short time ago. On Christmas morning she could not even remember from one gift to the next that it was Christmas. She appeared to be overwhelmed at the generosity of the gifts and would ask why she was getting the gift- was it her birthday? Someone would say, “It is Christmas, Grandma!” and she would reply happily, “Oh! Christmas!” Until the next gift when she again would question the occasion. She even tried to give gifts away because she could not figure out why people were handing them to her. It was sad, but we all laughed with her. That- we can do.

As I think about it, I remember last year’s holidays and how different her response to the season was that short year ago. My journal entry makes it ever so clear.

Here it is from January 2009:

For the past two and a half weeks every morning has been a succession of Christmas mornings. At least Susan has thought so. Maybe it is the sight of the Christmas tree that makes her forget that Christmas was celebrated several weeks ago. But Susan doesn’t remember that. Each morning Susan arises filled with all the happy greetings, kisses and smiles that are characteristic of the morning of our Saviors’ birth. Inevitably, Susan has that childlike twinkle in her eye as she heads my way with her arms outstretched morning after morning; Her lips puckered and ready to smother me with red gooey kisses and greet me with Christmas blessings. She is just as excited about it being Christmas morning as she was yesterday and the day before. Really she is cheerier than she was when truly it was Christmas morning.

The apparent dilemma is mine: do I play along and wish her joy and cheer as she covers me with lipstick or do I stop it all before it gets into making Christmas dinner and exchanging gifts. Potentially, if I don’t stop this endless season, I could go broke before the middle of January, thus I am forced to play the Scrooge.

As the week has progressed I have gotten better at handling this misplaced cheer. I can spot a Christmas morning face from all the way across the room! Susie Q enters, smiling ear-to-ear and heads toward me with her lipstick in place and a noticeable pep in her step. From across the room I announce, “It is not Christmas morning!” At first she resented this stealing away of holiday, but as the days have gone on with the same start, it became easier for her to change her holiday tune. Eventually she has resorted to acting as though she knew that it probably wasn’t Christmas all along. Poor thing. Still, I feel like I am throwing lumps of coal into her stocking. But really Susan, the stress of The Christmas that would not end is really getting to me.

White Christmas

It was a white Christmas for much of the US this year, including us. Susan’s first white Christmas; she keeps reminding us! The snow started on Christmas Eve morning and just kept on coming all throughout the day and night. I was excited to see a really white Christmas after all of these years, but not Susan. Apparently she would be perfectly content to have gone her entire life without ever seeing a white Christmas. I suppose we can attribute some of her confusion and grumpiness to the weather.

The back of our house is lined with large windows that peep southward onto an open back porch and beyond. So, from nearly every room in the house there is an inescapable view of our snow covered back yard. Every time Susan has emerged from her bedroom these past three days, she has inevitably looked with surprise (the kind of surprise one expresses upon seeing something for the very first time!) at the snow-covered back yard. “Karen! What is that?” she always asks as if we didn’t have this same conversation thirty minutes ago. “Is that ice that is coming down?” she continues. “Why is it all white outside?” “Snow, Mom.” I repeatedly have replied. “I have never seen this before!” she shutters and shivers at the cold. And she is right; her life has been spent in sunny Florida, southern California and the warm Philippine Islands. This really is her first cold white Christmas!

It is obvious to anyone who has seen Susan since the winter solstice that she does not like the cold! She has sat sipping hot coffee with a grumpy face while complaining about the weather and the dead plants until I have wanted to hide! I try cheer; “Susan, isn’t it beautiful! We are going to have a white Christmas! How exciting!” “We don’t need it, Karen!” she grumbles. “I think God knows best what we need.” I say, more as a reminder to myself then to her. Trying not to let her attitude wear off on me, I half look her way.

There, in my kitchen, sits my strong willed mother-in-law this holiday season. Never in the years past would she have visited us- let alone on the holidays. If, years past, I could have seen into the future, I am certain that I would have thought that the crystal ball was broken. And admittedly, I know for certain that I would have not wanted this. But really, we rarely get what we want (or think we want), it seems to me. Perhaps we get what we need. Still, here we are- her and I- on this cold snowy day in my Oklahoma kitchen and somewhere inside of me, I feel a bit of gratitude for this Christmas gift, this life of ours, as strange as it is.




"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." James 1:2-4 (The Message)

'Twas The Week Before Christmas

(I admit it, I am pushing it with this
holiday spirit stuff around here.)








‘Twas the week before Christmas and all through the house
Every creature was stirring inside of this house.
The doors all secured by the family with care,
In hopes that no one would open them- dare.

We parents were nestled all snug in our beds,
While visions of tomorrow all danced in our heads.
But Grandma in her kerchief and layers of wraps,
Wouldn’t settle her brain for even a short nap.

When straight from her room there arose such a clatter
I sprang from my bed to see what was the matter.
All way down the hallway I flew like a flash
Tore open the grottos and threw up the sash.

The moon from the window crept in with a glow
An illusion of mid-day to Susan below.
When, what to my wondering eyes should appear
But a mixed up Grandmother, thinking daytime was near.

Just a little old woman so lively but sick
I knew in a moment I must stop her quick.
More sleepy than I this family all came
Cause she’d knocked and she’d shouted and called us by name.

Come Karen! You Jeffrey! Come Kyle and Ashli!
Oh come on you stupids! Oh you must all come see!
To the front of the porch! To the shopping mall!
Let’s dash away! Dash away! Dash away all!

As dry morsels with quietness are better than strife
When I meet with an obstacle, prayers to the sky.
All over the household her curses they flew
To a house full- all woken, and grandchildren too

And then, in a twinkling, I heard from my room
The prancing and shuffling as here came my groom.
As I drew in my head and was turning around
Down the hallway my hubby came with a bound.

He was dressed in flannel from his foot to his head,
And his pj’s were checkered with greens and with reds.
A bundle of keys he had hung as a batch,
And he looked like a locksmith just opening his latch.

His eyes how they twinkled! His eyes not merry!
His cheeks were like roses, because he was weary!
The scowl on his mouth was drawn up like a bow
So my face turned pale, as white as the snow.

The clench of his fist he held tight as his teeth,
Smoke seemed to encircle his head like a wreath.
He had a mad face and a little round belly
That shook as he walked like a small bowl of jelly.

He was coming quite fast, a mother to scold,
And I laughed when I saw him in spite of myself.
The twitch in his eye and the twist of his head
Soon gave her to know she had something to dread.

He spoke not a word but went straight to work.
He picked up his mother, and turned with a jerk.
And pointing his finger at her as he warned:
“Do not let me hear you again until mourn!”

He sprang to the door, and to me gave a whistle.
And away we both flew like the down of a thistle.
But I heard him exclaim ere we walked out of sight,
“Merry Christmas my love and to all a good night!”

-By Karen Santiago

Happy Holidays?

Last year was Susan’s first Christmas with us. I laugh as I think of the memories from that season that inadvertently became lessons for me to use this year as we head through the season with our Alzheimer’s loved one.

The first lesson is: Don’t put wrapped presents under the tree, at least not before Christmas Eve! Doing so last year proved to be a bad choice since Susan seemed to be drawn to one particular gift wrapped neatly for my granddaughter. In the weeks leading up to Christmas, I repeatedly found Susan razing that present as she pulled, tore and ripped at the paper. At first I could re-tape it, but eventually it was tattered and torn in the same way it might end up on Christmas morning.

I explained over and over that it was a gift I had bought for Victoria. She argued back that she had purchased it for herself. “What is inside then?” I would ask, embarrassed that she had gotten me playing her game once again. She could never remember what it was- just that it was hers! Twice I even finished opening it to prove it was a child’s toy. Still, she coveted it possessively and waited to be alone in the room so that she could tear into it (again!).

The second of last seasons’ lessons is: Don’t let Susan answer the door during the holidays! Since we live far away from our entire family, we do receive occasional boxes from UPS, Fed-Ex or USPS during the holidays. On several occasions Susan would get the door and thus ‘get’ the box- THAT HE GAVE HER! You can guess the rest. But one of those boxes came when I was not home and I had no idea it had even arrived. In fact, we never did actually figure out when the box had really arrived.

I was reaching behind a large object in my living room when I discovered a box from Colosse Cheese (in Pulaski, NY) hidden there! Needless to say, I recognized the box as a Colosse Cheese box that had obviously been sent by my father. Colosse Cheese is a well-known cheese joint with yummy cheese that my dad kindly shares with his children around the US each year. He knows we all love the cheese from Colosse and the memories from days gone by.

“Susan, when did this box arrive?” I asked rather surprised. All she could say was that the man brought it to her! I pointed out the shipping labels that were very visible all over the box that read: TO Jeff and Karen and Family…………… I explained that it needed to be refrigerated because my father had sent us cheese. Tucking the box neatly into the refrigerator, I headed contently to bed.

A bit later Jeff went to get water from the kitchen and returned with a puzzled face. “Karen, where did you put the box of cheese?” “It’s right in the refrigerator.” I answered confidently. He headed back toward the refrigerator as I lay listening to the familiar sound of the refrigerator open and shut before I heard his feet hurrying toward his mother’s bedroom. When she answered I heard him ask for the box, to which she denied having any knowledge. I could tell he entered her room against her will before I heard his feet marching back to the refrigerator where he replaced the box in a less conspicuous place in the refrigerator.

Next day I was talking to her at her highly secured bedroom door when I got a glimpse of my box sitting in her room again! Angry, I grabbed it up and asked her what she was thinking by taking it back out of the refrigerator?! You may be laughing, but I assure you that I was not! She protested my robbing her of her box as I headed toward the refrigerator where I camouflaged it out of view from the house cheese mouse.

There were other lessons learned last season and other memories made. I am sure there will be more fun -more stress -and more stories to share this year. That is what it is all about I suppose, isn’t it? I wish you all happy holidays with those you love this season!

Holiday's Are Happening

I can hardly believe it is already December. Seems like there have been so many things distracting my mind from the holidays that I have been slower then everyone else in arriving into December. While most of my neighbors had their outdoor lights up the warm week of Thanksgiving, my house is still considering the effort. My Christmas tree has been a slow process that is protesting my small efforts every step of the way. I took it down from the attic and let it sit in the garage for about a week. The hope that Katrina might be coming to visit for the holidays encouraged me to drag it inside and put white lights on it. That evening Kiara and Matt came to dinner and the lighted tree twinkled from across the room acknowledging my effort. A good start, I thought.

But by morning my efforts were dashed when I plugged in the lights and to my dismay, no lights came on to greet me. What? I wiggled and inspected and swapped out lights until, in the end, I gave up and went on about my twinkleless day. That was when Katrina called crying to inform me that her and Kyle wouldn’t be able to make it home for Christmas. I was sad for her- but mostly for us, since she brightens up the holidays so much. She loves them. I encouraged her to get excited about new traditions that her and Kyle could create as their very own.


My words were a reminder to myself that I needed to heed my own advice, so I proceeded with my village set up. I thought it would be fun since my granddaughter would certainly love the little people and places we could arrange. Kiara and Victoria and I set the finishing touches on the village together with people going places and singing carols, lighted houses and lighthouses atop hills, and a variety of shops for our little shoppers to visit, all brightening up my dining room. Maybe it is the little girl in me that loves the Christmas village so much. I like imagining where the characters go, what they do and why and where the houses and bridges are located. It is practically the only thing I can feel like I control these days. .

Susan, like me, wants to be in control of something- someone. So, I gave her the nativity to set up. She had so much fun putting things where she wanted them. She stood over the manger scene seemingly intent on getting them just right for an half hour or so. Finally, after they were all in place as she had ordered them, she turned toward my village and the little houses and people there! I watched her cross the room and begin to move them into places she thought they ought to be, some of which I actually thought were brilliantly displayed, like the wooden bridge that she tucked neatly beside an imaginary snow bank where one might actually cross from Ace Hardware to the lower part of town.



It isn’t as though I don’t love the holiday; really I do. It is just that there have been so many things this season distracting me from getting into the spirit. It appears that I have been slow at filling my home with the outward signs of the spirit of the holidays, but I assure you that my whole year has been preparation for the true meaning of this season! In fact, I think that my heart understands the true significance of Christmas likely better than it ever has before. Perhaps the birth of God’s son, who came to earth to die for my sins and yours, is more clear and meaningful to me this Christmas.

Indeed, as I look at my little manger scene and the parents (Mary and Joseph) whose hearts must have been filled with awe, as beside them lie this child, I am struck by the incredible gift we have been given. The gift that that same son made possible when he went to the cross some thirty years later. The only begotten son of the Father who came and lived and died for me and for you. That sacrificial life and death of an only son is what Christmas is really all about.

Fireplace

“Oh the weather outside is frightful
But the fire is so delightful…”

So Susan would not leave the store without the fireplace. She loved it and decided she wanted it. Jeff and I talked to her about comparing prices and looking around, but she was having none of it. She was convinced that if we left the store, the fireplaces would sell out and she might never get one.

The thing is that she had been itching to go somewhere and do something. She just gets that way sometimes, although she generally expresses her desires by telling me that she needs to go to the office, pay her rent, attend mass or pick up something at a store. Sometimes we take her out just because she wants to, even if her mission is misguided. Occasionally it makes her worse, but mostly it works like a charm allowing her to chill a bit- for a day or so anyway.

Realizing she was in one of these moods, Jeff offered to take her to a few of her favorite stores. She strolled the store isles and eyeballed shelved goods as if she were searching for a treasure. Finally she found it in the back of the store! A wood fireplace! Okay, it’s not a real fireplace; but it looks like one. It is a real heater though, and she had been complaining about the cold ever since it dropped below 90degrees sometime last summer.

Once it became evident that if we were going to get Susan home with us, it would be with her fireplace, we gave in. Once it, her and we were loaded up and headed down the highway she chattered incessantly about how it worked and if she needed to get gas or wood logs before we went home. Jeff explained over and over that it looked like a fireplace but was really just an electric heater- no logs, no gas.

It wasn’t until the following night that Jeff was ready to set the thing up in her bedroom. Knowing how excited she was caused us a bit of excitement on her behalf. “No more complaining about being cold,” I pondered. And maybe shower time will be a bit easier since she will feel warmer! Victoria (our granddaughter) even felt the thrill as she helped Grandpa unpack and roll the new object down the hall toward Susan’s room. But the sun had set and Susan’s sundowners had kicked in and she was ready to bite the head off of anyone that entered her room, as if there were a conspiracy against her. She eyeballed the heater suspiciously and grouched some remarks at Jeff. Again he explained that no logs or gas were needed. “Get that thing out of here!” she yelled, “It will give me a bloody nose! It’s too big! It’s too small! I’m warm enough in here!”

The next hour was spent repacking the fireplace into the Styrofoam then into the original box so that it could be returned back to the store. What a waste of time, energy and gas, we all silently shared our thoughts. For the next several days, that neatly repacked box sat in the dining room waiting for an opportunity to be return. But the unwanted box did not go unnoticed sitting there. No, in fact, it fascinated Susan all over again- this whole fireplace in a box thing! She stood by it, touched it, read the box, asked questions and hovered possessively over the thing day after day. Periodically she brought the box to my attention or would grill me with questions regarding it. “Why are you going to return it? Does it get warm? Will it fit in my room? Does it need gas? Can I have it?” Honestly, her new interest frustrated me because I was afraid that another unpacking and repacking might not go over so well around here.

Periodically throughout the days she would disappear and I would inevitably find her admiring the big box with the picture of her rejected fireplace on the front. “Mom, you’ve already decided that you don’t want it. Quit looking at it; we are returning it to the store!” She acted like a lovesick teenager who, we all know, never listen to the best advice. She was in love all over again and it was obvious that she wanted it! I wouldn’t discuss it with her. “Talk to Jeff,” was all I would allow.

Finally she convinced Jeff that she had to have it in her cold dark room. Jeff gave in to his mother’s pleas for a second time this week. Before I knew it, the fireplace was again unpacked and heading for Susan’s room. This time she accepted it as if it were an old friend coming back home. It was hers and she was finally glad to see it. So, we put the familiar green stickers on the power buttons so she could use it by herself. A cold front is headed this way it seems, but don’t worry about Susan, she will be snug by her fireplace heater this winter.

“Oh the weather outside is frightful
But the fire is so delightful
And since we’ve no place to go
Let it snow, Let it snow, Let it snow!”

(Note: The stickers mentioned in this blog were Stefanie’s great idea and have served Susan’s needs nicely. We use colored round stickers of red and green. We place them on power buttons of electronics to cut through the confusion. Our microwave has a green dot button on the ‘add a minute’ button so Susan can push it and warm her coffee. We tell her, “Green means go. Red means stop,” in the same way we used to tell our children the same.)

A Stitch In Time

Have I ever mentioned that Susan crochets? No, I don’t suppose I have since in fact she really hasn’t crocheted in perhaps a decade or more, although reminders of her hobby were always everywhere in her home (when there was a home). I might even suggest that the crocheted handiwork of Susan ostentatiously enveloped the family house creating a sort of constant reminder of Susan’s matriarchal reign. She was Queen and this was her castle, no doubt. Susan’s grandiose style was evidenced in every aspect of her decorating attempts. The intense red carpet met red velvet curtains in a way no other home could have pulled off. Peering gregariously from beneath each panel of velvet hung the crocheted window liners. They hung in half-guarded fashion as they attempted to camouflaged each and every view of the out-of-doors. Meanwhile, beautifully crocheted tablecloths and bed covers merged alongside hand crochet doilies of every sort and color and spanned from one end of the house to the other. Those were the days when Susan was in charge and in an odd way, I’ve missed them.

So, this past year and a half, in our desire to help Susan rediscover her old self, it was natural to find ourselves half-joking about the prospect of her crocheting again. Several times we discussed going to our local hobby store and purchasing the supplies. The thought disinterested her. I suppose she secretly felt as I did: suppose she couldn’t do it? Not knowing for sure that that part of her was lost seemed better then knowing it was. But something inside kept nagging me. I had observed that Susan’s “old memories” seemed natural to her, like when her unsure hands began moving confidently upon finding themselves in familiar territory, like her garden. Digging weeds, watering and feeding plants, cropping dead growth and replanting starts all brought out the once familiar confident Susan. She revisited her old self there in the garden; so I wondered if perhaps the same might be true with her crochet.

Realizing the risk was rather small we eventually just went for it. At the store we contemplated needles and threads for half an hour until finally agreeing on four spools of bright thread and several needles to help her find her way. She seemed a bit unsure of her needle size, but giving her choices to hold and mess with seemed the best way to kick-start her brain. Displayed in a pretty basket, I put them beside her chair again and again the following days as she pushed them away repeatedly. Day after day I watched and hoped that she might just pick them up and find her groove. She didn’t. Days past with no attempts to crochet.

No attempts, that is, until tonight when Kiara came to spend the afternoon with us. I think it was Kiara’s desire to connect with her grandmother, mixed with her admiration for the incredible gift Susan once had to create such beautiful things, that peaked her desire to get Grandma crocheting. I believe these skills and know-how’s should not be lost with any generation who possesses them, rather they should be passed down from generation to generation in every family. Every generation of boys in this family knows how to fish with a cast net. Now lets work on the girls.

And so they began with Kiara encouraging Grandma Susan to teach. It seems the role gave her a sense of importance and purpose; it was obvious that she was comfortable with the whole 'being in charge' thing. For about the next half hour Susan was busy with her hands, but sadly her brain seemed to be struggling. All the while Kiara sat beside her looking on with concern, but continued encouraging and questioning her grandmother. Susan kept on and soon her hands began to catch on and her mouth began to chatter. She was passing on instructions and crochet hints to Kiara. Eventually Kiara and Susan sat side-by-side crocheting while Victoria looked on. Each time I passed by, Susan seemed more confident and Kiara seemed more enthralled. Two threads began to form two circles, Susan’s and Kiara’s, as they crocheted side by side.

In the same way that the thread in her hand was becoming something identifiable, so Susan was transforming into something- stitch by stitch. She was crocheting life force into her very being, causing her to talk faster and more confidently about the next move the needles would make and the patterns that would eventually follow. Suddenly she was telling Kiara a story about crocheting as a young girl in the Philippines and how she would crochet to keep herself from thinking about how hungry she was. Wow! We never knew that.


And when restless Victoria began to wiggle and romp about the crochet circle, Susan was all business, “ Get out of here! We’re crocheting here!” she scolded with importance. She had something to do! Finally- something important to do! Something that others need to look out for and be careful of! Something of her own! Something she knows! She is in charge of her needle and the thread is knotting and moving as she directs it to. Once again, she is the designer and the needle and thread she is holding are her subjects. Kiara and Victoria are her students and her enthralled audience. She sees me snapping pictures of this awe-inspiring moment in her life. This is important stuff! The energy in this room is suddenly light and relieved as Susan breaks through with her hands and her brain. It is obvious that she is as relieved as the rest of us that she can do it! Yes, Susan is crocheting!

Silver Alert!

Another Silver Alert has been issued here in Oklahoma City. In the same way that an Amber Alert is issued for a missing child, so a Silver Alert can be issued for a senior citizen who goes missing. The recent decision to enable this type of alert locally, serves as a reminder to me that we are not alone in caring for a confused senior citizen. In fact, with the increase in the number of people suffering with Alzheimer’s, I am afraid we will only become more familiar with these alerts.

James, the eighty year old gentleman who is missing today is said to be having problems with his memory. His 1995 silver Mercury Marquis is gone as well. My prayers go up for this man and his family this morning. I hope that maybe by the time the sun rises he can be found and returned back to those who care about him. He looks like such a sweet kind man (his picture keeps flashing across my television); the kind of guy I’d like to have for a neighbor.

That’s who they are, you know- these Alzheimer’s people. They are our mothers and fathers, our grandparents, and our kind neighbors. Yes, if statistics hold, they are us- you and me! They are people who are loved (or not loved) and folks with careers, hobbies or ministries that they have believed in and worked hard at. They are Presidents' and actors, housewives and sisters. They are anyone. They are Susan.

They, like Susan, were just busy living life. Probably there were small bouts of confusion or small moments of mixed up words or names. No real reason to be concerned; all of us do that. Next there were likely some missed appointments or getting lost going to familiar places. Finally the symptoms became harder to overlook and ignore and probably caused concern in those close by. Eventually, (as is Susan’s case) if family members are not nearby, they are made aware of the changes through concerned neighbors or co-workers.

For Susan it was her landlord and neighbors who became concerned. She was living alone in an apartment and still drove a car and seemed fairly normal (at a distance). She hid things well. When we would call her to check on her, she generally mentioned that she had been to church and watered her plants, she always asked when we could visit and usually said she was in her bedroom watching television. We really had no idea exactly how bad things had gotten.

Eventually the family agreed to do an intervention on her behalf. Family members traveled from across the U.S. to accompany Susan to several doctors’ appointments and to make some decisions regarding her living situation. Susan was happy that she was getting so much attention and had no idea what was really going on. Much coaxing was necessary to get her to agree to go to her children’s homes in other states. She even participated in making decisions regarding her possessions that were packed into a U-Haul to accompany her on the journey. But by morning, she woke up to a house with things rearranged and moved about and was sure that she had been robbed. The only thing she had been robbed of that night was her memory.

Looking back, I am not sure how she lived so long by herself when her comprehension level was so sadly diminished. But she did. There was no way to grasp the depravity of her reality until we entered her apartment the day of her departure and began the big clean out. Although certain things weaken my stomach, I started with the refrigerator to allow her own children the freedom to sort the more important items and paperwork. Let me just say this: stench, rot, bugs, and many loads of unidentifiable packaged stuff (for lack of a more suitable word) later, and several hours until I could turn my attention to the old canned food and saved plastic containers and jars crammed in every spare inch of this small kitchen. As I yanked oddities from their uneasy places in the kitchen I could hear the other family members discussing their findings in the rest of the house. Things like overdue bills, urine on floors, and unexplainable loads of junk. We all held back tears. The thought of her living under these conditions was practically unbearable. There was no question that we were doing the right thing, even if Susan found it hard to understand.

The truth is that everything about Alzheimer’s is hard to understand, but it is not all bad. Susan now lives in a safe clean home where she is loved, eats good healthy food, and takes her medicines on time. Her medicines probably have gone a long way helping her retain a portion of her memory and keeping her from becoming too angry, aggressive or depressed. It is not ideal for any of us, but you learn to do the best you can with what you have. We have a mother with Alzheimer’s.


(Note: The pictures on this blog were taken last year when the family gathered for the intervention with Susan.)



P.S. Just as the sun was rising in the morning sky, they announced that Mr. James was found and is safely home with his family. Thank you God.

Jury Duty

So here I am sitting in the Oklahoma County Court House this Monday morning. This is my call to duty as a juror. I find myself in a large courtroom situated on the fifth floor of this historic down town building. All four hundred of us packed side by side as we listen to courtroom roll calls summoning us to another room for service. Each roll call thins the population in this room where I find myself seated in the far back left side. At the front right a television is playing, The Price is Right, while just in front of the judges stand a table is situated and set up with the game of dominos. Four jurors are passing their time there as if this were some sort of a game room. Seriously. But then again, why not? It may be a better way of passing the time than the books I have stashed in my bag in hopes of finally catching up on them. The unexpected sound of the dotted blocks clanging from the player’s hands to the table beneath them and an occasional ding of one dropping to the floor, breaks the low murmur of whispers. The muffled voices of jurors making small talk with one another and the slightly louder voices of an occasional question asked to a court clerk envelops the room in an almost hum.

My summons to jury duty arrived in the mail about a week before Katrina’s wedding. After glancing at it I set it aside to be forgotten until one day last week. I figured getting out of my duty might be easy due to Susan's dependence on me for her care and safety! But my son encouraged me to sit on a jury and be the one who really looks at both sides. I wanted to. The thought of finding some justice for someone out there in my community appealed to me. That is, until my caretaker substitutes fell through after it was too late to be properly withdrawn. Consequently, my attempt to do the right thing has put the entire family on the spot. Going to serve has forced someone else to come and serve. Everybody has better things they’d like to be doing. So do I.

So, I left the house before daylight this morning, leaving Susan soundly asleep and secured behind the grotto doors on her side of the house. After cancelling today’s shower, I left her prepared oatmeal in the microwave and the coffee in her pot ready for someone to flip the switch on. Kiara will head over later this morning to be with Susan. Caring for an Alzheimer’s person really does take teamwork if it is going to work out without totally robbing one person of their life and energy. Problem is, it is looking like this jury duty deal might go on for days.

The price may be right here in the court today. I hope so. But more often than not these days I find myself wondering if the price ever really is right. Is the price really right for my family? What about for Susan? And what about for so many walking these halls and sitting in these court hearings on this day- or the next?

Wine and Whine

Here I lie crumpled in a corner of my bedroom with a glass of red wine in one hand and the other hand pounding on the keys of my computer. Who else wants to hear me wine- I mean whine. I’m not sitting here hoping to relax and wind down as I might on another evening, no- not so fast! My hope is solely to calm my nerves and chill- just chill! Am I asking too much? If I can achieve that goal then perhaps I can proceed to the other. I’m guessing you want to know why I’m shaking and why I am having a glass of wine on a Tuesday evening at barely six-thirty PM. And if I am wrong, that is, if you aren’t wondering or perhaps don’t care-oops.

Susan. Need I say more?

Jeff is on a business trip (lucky him) and I am here, Susan and me. She woke up confused. She had lost her keys between going to bed and waking up. And of course, it wasn’t her fault- it was someone else’s. But there is no one else, I explained in vain. I attempted a normal day, in spite of Susan’s key crisis. We went to get groceries, prepared meals, and had the usual visit from the nurse. Lawanda, Susan’s nurse, was amused by Susan’s feisty spirit. The language she heard today was certainly not what she was expecting on her routine visit, I am sure. She documented Susan’s attempts to ‘go home’ and her restlessness. Upon leaving she bid me good luck and expressed her concerns about the rest of my day.

But I was optimistic. We would go ahead with our plans to accompany Kiara to look at fabric for curtains for my new guest room. Something to look forward to- yes! Susan, on the other hand, thought our outing was about getting her a new key made- for her red vehicle. Getting to Kiara’s and getting to the store with Kiara was all but peaceful; with Susan in the back directing us to the dealership and complaining when we didn’t obey her orders.



Obviously, if I had the ability to forsee the future I wouldn’t have attempted the trip. Trust me on this one. If I had known that Susan would scream and yell and abuse and accuse both Kiara and I all over the store in an aggressive psychotic manner like I have never before witnessed, yup, believe me- the trip would have been cancelled. But, I didn’t have that foresight and therefore was caught awkwardly defending Kiara and myself in public before a rather concerned audience.

Oh no, don’t get me wrong- they were not sympathetic for the plight of Kiara or myself. No, they eyeballed Kiara and I with judgment and suspicion while sweet little victimized Susan yelled about how we had stolen her car that she had just bought! I begged her to quiet down and told her she was creating a spectacle. All the while she screamed back, so sure she was right, “Come on now, let’s go! Give me my car back! I will not be quiet! You are just ashamed because you are hiding my car from me. What kind of a human being are you? Stealing my car and my keys right after I bought it?….”

If you listen closely, surely you can hear me begging , “Lower your voice, Susan! Stop it! You are imagining all of this!” And when she kept coming at me like a rabid bulldog, I resorted to, “You are seventy- three years old, Susan! You don’t have a driver’s license! There is no red car! You must stop!” My attempt at firmness only made her firmer- delusionally firmer!

Lest I dare forget, let me give a 'shout out' to all our on-lookers who circled and hovered and eyeballed Kiara and I, as they seemed to be trying to decipher if and when to intervene on Susan’s behalf. I mean, seriously, her frail little self was accusing us of stealing her car in the parking lot. What were they supposed to think? If it were myself in their shopping shoes, I too would want to ensure the protection of this vulnerable upset elderly woman. So kudos to the strangers!

But hey! What about Kiara and myself!?! Who would protect us? And by the way, in case you are wondering, the answer is YES. Yes, security was called before it was all over with. Kiara was forced to escort Susan to the car while I attempted an explanation of Susan’s condition to skeptical store employees.

In the parking lot, I found Kiara attempting to coax Susan into my suburban and an equally upset Susan refusing to budge. After all, she knew she had driven her new red car there and that is what she(damn sure!!) was going to leave in! I wanted her to leave in her own vehicle too- trust me on this one.

After a long fight, we drove home with Susan kicking up a fuss in the back seat. After dropping Kiara back off at her home, Susan and I continued the conflicted trip on to our own home. That is where I fed her again while attempting to ignore her continued accusations about me stealing her purse and keys along with other such verbal abuses involving my character and integrity. Finally it was more then enough and Susan found herself deposited into her area of the house. As for me- well, you know where I am now.

Moving Day

All night long I could hear Susan moving about in her side of the house. In fact, Jeff even had a conversation with her through the grotto doors at four AM. She insisted he let her out so she could ready the bottles for the two babies. Again, she would hear none of the truth. How silly of Jeff to say she was seventy-three; she knew she was early forties, besides, she had two babies to prove it.

In fact, she had been sent to her room the night before to protect her from herself and the incessant attempts at finding the hungry babies. She wouldn’t quit asking for milk and trying to find the stairs ‘up’ to where the babies were (in Susan’s world.) Our house doesn’t have an upstairs- the rest of us know that. She spent the entire rest of the night busy with whatever her life needed to be busy about in the middle of the night. “Probably those babies, the potty, or her television.” I told myself, as I waivered in and out of sleep between the crashes and plops and plunks that echoed down the hallway.


In the morning I made our usual healthy warm oatmeal, whole grain toast and two pots of coffee. Eventually I went, key in hand, to entice Susan out of her warm bed and to the breakfast table. I was surprised when she passed me in the hall with an armload of her personal belongings and a large smile across her face. “Uh, where are you going with that stuff?” I couldn’t imagine. “Right down here.” She said in a voice that thought I should already know the answer, but hinted that I probably didn’t want to know. “Right down where?” I dreaded the reply, whatever it was. That is when I spotted the ray of light streaming the morning sun down the hallway. Other than Susan’s door, which is the first one to the left, all other doors are on lockdown since Susan moved it. We all know why.

I followed the stream of light to the room at the end of the hall where I was welcomed with a wide open door. Susan was explaining something about moving into the vacant apartment when I got a load of the room. This 'guest' room has been inhibited on and off by my son and his wife for the past year or two. What caught my eye was not Kyle's personal effects, not the furniture belonging to this room, rather Susan's belongings intwined and intermixed, like an out of control ivy vine spreading out and taking over. All across the headboard was a line of
statues, crosses, flowers and so on, plus sitting about the room were shoe boxes, baskets of personal care items, pillows, blankets, jewelry boxes and everything else Susan felt were important enough to move to her new location! I was shocked and don’t even remember what I said to her next, although I do remember hurrying down the hall to see what was going on in her real room. Other than the large furniture items and her television still hanging on the wall, the room was mostly empty!

How to handle most situations that Susan presents around here, generally comes to me instinctively, but not this time. Indeed, I must have even wondered out loud what I was supposed to do. Yup, this one stumped me! I think I just walked around shaking my head in disbelief at all the time and energy she had put into this “big move.”
And the thought of her actually picking the door lock worried me.

Eventually I remember quizzing her about what in the world she was thinking, moving her stuff into a room that wasn’t hers -and what did she want me to do with this room since she wasn’t going to be allowed to occupy both. She suddenly decided it was my mother’s fault! After all, it was all because my mother wanted to move in to her room that caused her to move out!

She acted as though it was the only respectable thing to do. Sorry Susan, this one won’t work on me, but I admit, it is getting to me. You see, I know that my mother already has a mansion in heaven and she doesn’t need this earthly room. I hope for you too Susan, a mansion up there one day. For now though- your own room will have to do, girl.

Speedy Feet

Sometimes we just have a really great time with Susan. After an entire week spent aching to go out, last night, finally Susan was getting what she wanted: a night out with her son, her granddaughter and myself! Freshly showered with the help of her aid and a matching outfit chosen for her to wear, we rolled her hair and she did her own makeup (thank God she can still do that!) Jeff was home and it was time to go. Because of a little struggle getting her black go-go boots on, we opted instead for her black slip Aerosols’ that wedge a slightly elevated heel. (She would wear them everywhere if I let her.)

At first I wasn’t sure what her hurry was- why she almost ran everywhere we went. Her hurry worried me since it was an off balanced sort of a hurry. Kiara noticed it when she escorted Susan to the restaurant bathroom. “Kiara, I tell you, these damn people make it too dark.”she whined. Not stopping there, “IT’S TOO DARK!” she shouted at a woman in the bathroom as she flailed her arms about and raised her sunglasses clad head in an attempt to see better. “Well Grandma, maybe you should take those Hollywood glasses off,” Kiara replied ruefully. Susan ‘took care of her business’ for a long 10 minutes, and when she finally emerged from her stall (sunglasses still in tact), she stumbled halfway across the bathroom in less then half a second like a wobbly drunk and exclaimed, “Damn speedy feet! I tell you what!”

We honestly had a great time, and for a change, so did Susan! We had eaten till we were full, laughed till we cried and shopped…no, not till we dropped. Had we? The early sunset must have been what made it seem so late when we arrived home. It was apparent that Susan was getting confused as she searched for bags of things she felt certain she had purchased, like rolls of tape. When we pulled in the driveway she asked if this was where she lived. She needed extra care exiting the car and I remember worrying that she might stumble with her ‘speedy feet’ down the driveway. She didn’t, but those very same ‘speedy feet’ got her up to the house, across the long porch and to the front door in a real hurry. She floated as I shouted warnings like an overprotective mom. We half-laughed together as I shouted, “Slow down, Susan, you’re going too fast! Be careful! Hold on! Watch it; you might fall!” What am I complaining about, I wondered, usually she has to be poked and prodded just to keep her in step. This isn’t so bad.

We entered the house as though we were scurrying out of a rainstorm, only we weren’t. I still don’t know what we were hurrying for, except that her feet were in charge and the rest of us seemed to be walking to their beat as they scurried on their merry little way. Jeff entered first and headed toward the back of the house. Susan and I entered together, but she overtook me in the entry as we discussed going straight to bed. I cut our conversation short with more motherly warnings, “Slow down, Susan, what’s the hurry?” and “You might…!” BOOM!!- She went down! I don’t even know what happened exactly but she was suddenly face down on the floor with her head tucked under a metal tea table sitting between my living room and dining room. She didn’t move! “Mom!” was my immediate response, as I ran toward her. No reply. “Jeff!” my screech echoed down the hall, “Get in here!” I knelt next to Susan, asking, “Are you okay?” She didn’t know. She didn’t feel anything. She wasn’t sure. Finally she mumbled, “I hope so.” I hoped so too.

I checked her over, questioned her, and watched for signs of injury. A worrisome egg sized bump appeared on her temple. But she was more concerned about eating again! A good sign- I deduced. Still, all the while she ate, I sat examining her with my eyeballs. I saw a chatty Susan whose incessant stories made me laugh some more. As an answer to my question about what her hurry had been in getting into the house, she explained, “Well, I just wanted to hurry up and get over with whatever I was doing! And this damn bump is what I get for my reward! I hope it didn’t shake the brain! But if it did shake the brain- Lord, make me a smarty!”

Before bed she asked for aspirin for her headache; otherwise there seemed to be no signs of a serious head injury- only Speedy Feet Syndrome. And next time, we’ll remember that shopping till we drop can really happen around here.

There-With Susan

(My poetic attempt at a look at Alzheimer’s through the eyes of those of us watching on.)




A different Susan hangs out here these days;
The old one left when the new one came.
She has changed in almost all of her ways.
I find difficult- this try to explain.
The old girl just slowly fades from our sight:
As caboose leaves town on an afternoon train.
Good-byes just wait while she puts up a fight
And I stand as witness of unwanted change.

The light in her eyes is slipping away
“I know what I know!” still’s her loud proclaim.
Clear in her vision is only this day
And nothing will e’r for her be the same.
Since what we have left will not likely stay
It’s right now the fun `twill be our big claim.
A smile, a laugh, if we dare, if we may
An honorable goal each day for to aim.

Often days are played like some sort of game
Not she or I ever wanted to play.
Each move in turn now depends on our brains;
Foreseeing my 'go' makes me start to pray.
I ask God to show me right ways to engage
And guide her through this game that’s insane.
For tactics must change, we’ve learned with each stage
Of this disease, where we rest most the blame.

This storm all around us threats days all the same
But Sue fights to keep her thoughts from astray
While drops that are falling form puddles of rain.
Jared but not shaken she heads on her way;
Together we trek unfamiliar terrain.
Unknown tomorrows are each their own day.
We’ll march on ahead with our torches aflame;
This vantage shows clear- there’s no other way.











Written by me: Karen Santiago
Dedicated to her: Susan

Singin' in the Rain

What could be better then waking up to a bright sunny morning, a warm breakfast and a hot cup of coffee made just the way you like it? When Susan emerged like a vampire from her cave this morning, that is what she found. Her eyes squinted to adjust from the darkness of her room to the sunlight shooting in through the open windows. Breakfast was on the table when I knocked at her door to encourage her to come out. A rare smile crossed her face when she saw me greeting her in the hallway with a song and dance to “Singing in the Rain”! She surprised me by responding to my morning cheer by joining in my song:

“Just singing in the rain…

I’m laughing at clouds
So dark up above.
The sun’s in my heart…

Let the storm clouds chase
Everyone from the place…

I’ve a smile on my face…”

She wants to go shopping since she sees on The Rachael Ray Show that Rachael has ‘the new style’ of pans with the orange handles. Susan likes them! She wants them! She wants to find them at the store! She could cook smaller amounts in them. Besides, they are cute! Susan has always liked orange. In fact, when she caught me painting Katrina’s bedroom yesterday she asked me if I would paint hers too. The thought hadn’t crossed my mind. I was preoccupied with keeping happy energy in the house with my plans for a peaceful guest room. It isn’t that I won’t paint her room- I will if she really wants it; I am just scared about the color she might pick out.

No shopping for pans or painting Susan's walls today. Although I have managed to brilliantly divert her happy energy by putting in one of the good old classic movies that Stefanie has smartly sent her. She loves romances and actually remembers the old stars, familiar shows and classic music. Susan is sitting in her rocker enjoying Cary Grant and Sophia Loren in House Boat. She is amused at the antics of the young boy in the movie as she laughs and chatters in her first language, tagalong. She does that now and then; she reverts unknowingly back to her language without realizing it. I may not be able to make out her words, but her face and attitude communicate all I need to know. It's obvious, basically she is happy- so what does it matter what she is saying.

“I’m singin’ and dancin’…”

Empty Nest

I admit that having an empty nest is not something I have looked forward to. I never really gave the thought much time. It was always so far away, it seemed. Until the morning of Katrina’s wedding when it hit me in the face suddenly; as if, in all the scurry of wedding planning, I had not given serious consideration to after the wedding. After the wedding for Katrina and Kyle was our focus: honeymoon plans, moving to Utah, military life, her role in the marriage and so on. All of that was covered and talked about. I was excited for them about their future. Much of ones life, in a way, is preparation for our future: character building, schooling, skills development and much else. She had been well prepared. But had I?

I had done a good job at pushing those thoughts out of my thinking those past few months. It was not as though I was in denial. One day Katrina even approached me, “Mom, everyone keeps asking me about what you are going to do when I am gone. I feel guilty and don’t want to leave you here with Grandma.” She looked at me with tears in her eyes. I hugged her and without hesitation assured her, “Katrina, it is true, I will miss you. But I am excited for your future. Seeing you live out your dreams and pursue your happiness is a part of my dreams. I would never ever want you to stay here or even worry about me. Suppose my mother didn’t let me go? I will be fine, Sweetheart. Be happy.”

I had not allowed my brain to visit that thought again since that conversation with Katrina in the kitchen. That is, until the morning of her wedding as I stood over the stove preparing breakfast while I listened to her moving about the house. Finally she was next to me at the stove and my heart knew that this was the last morning I would have my baby living in my home. I could feel the tears rolling down my cheeks but didn’t want to disturb Katrina. She had much to celebrate. I thought about how the next few hours were going to escape from all of us and she would be walking down the isle soon and would become a wife with her own home and family. But,I knew she would still be my baby- my girl. I felt gratitude for having two wonderful daughters such as mine. A tear must have dropped because Katrina suddenly asked, “Are you crying?” I assured her that the only problem was that wonderful daughters are hard to let go.

Although it has been ten days since the wedding, it was not until last night that Jeff and I really felt the empty nest syndrome. We have had houseguests and several fun overnighters with Kiara (while Matt was on a short hunting trip.) The delay was certainly sparing our minds and home of dealing with the issue. But the empty nest was not so empty last night since Susan certainly did her part to keep us occupied and entertained. Boring- it was not.
It started when she appeared in the hall with her keys in hand ready to leave to go to her own home. My once stylish mother-in-law was in one of her latest fashions, the kind I affectionately call “Alzheimer’s clothes.” That is what made me scurry for my camera in the first place, not knowing that I would be snapping away for the next hour. She was headed out to her car to drive herself home. I let her go; it seems that nothing I can say is as affective as her seeing for herself that she has no car in the driveway. I snapped some cute pictures of her sporting her white long johns,
new black and cream wedding shoes with her groovy red purse. And she was off!

Looking back, I should have figured that her mission wouldn’t simply end at my driveway. Upon not finding her car there, she remembered that she had actually parked it just down the street. So, with keys in hand she walked with a mission toward the parked car. Step by step she got smaller and further away; all the while the sun kept creeping down in the sky behind her. When she finally turned onto that same gravel road she had traveled the time she ran away, I attempted an intervention. With my camera still slung over my shoulder I hurried toward my mother-in-law-with-a-mission. I was on a mission too; it was to bring her safely home. For the next fifteen minutes my camera and I followed her as we tried to convince her that she needed to turn around and head back to the house. Nothing worked. Not the fact that the further she walked away, the further she would have to walk back. She didn’t care- she was driving back! Nor the fact that her brand-new shoes were being torn up by the gravel she was now stumbling
over. “Well, why would I buy them if I can’t wear them?” she argued. Silly me.

The closer she thought she was to that car (no cars in sight) the more she argued and fought. Eventually she was getting tired, causing her wedged shoes to wobble as she walked. She looked like an alcohol loaded senior citizen with a quirky sense of fashion. Even the horses she passed turned to take a second look. Gun shots rang out from a nearby farmhouse. “Better watch out Susan, you may get shot. We might be trespassing,” I warned, desperate. She didn’t care. She would fight for her car and her freedom to drive it- home!


To Susan’s delight and my dismay, we eventually came upon two neighbor men welding a fence. We must have looked like an odd pair of precarious women totally out of place on this country road. Their attempt to 'not look' too hard only reinforced the fact that we surely appeared to have gotten lost from our wild party and certainly must have been perceived as being up to no good as I whispered in her ear and she slapped me away. Imagine my pleadings in her ear as she turned toward the Fence Menders yelling unafraid, “Excuse me! Excuse me! Could you please take me to my car? It’s not far; it’s parked right over there!” She pointed toward one of their driveways (where I am sure they knew no strangers’ cars were parked.)

There is no way to effectively ignore two crazy ladies who approach you in the middle of a country road, but I assure you that these two kind men made their best attempt. Be sure, they kept us in their peripheral vision all the while. But Susan's aggression did not stop. She continued pleading her case as she propped her weary body against one of their trucks. I stepped between her and them; facing the man I was most familiar with, I asked him if he remember that my mother-in-law has Alzheimer’s. He remembered. (How could he forget after witnessing her runaway escapade last May?) I apologized for us both and tried to physically make Susan head home with me. She yanked her arm away and hit me some more as she kept calling over my shoulder to her hopeful rescuers. It appeared that I was a kidnapper and they were her only hope of salvaltion.

They did not rescue her, but my rescuer finally came. Imagine my relief when I saw my suburban turning the corner of the gravel road- the one that Susan had chosen as her escape route. Seems these men were even playing along now;I heard one of them say, “Here comes Jeff now!" and then, “Here comes a car that can take you!” Further imagine my relief as I buckled her into the car before we drove back to our empty nest on the hill. Well, almost empty

She did it!

She did it! Katrina got married! It was a beautiful wedding and we all had a great weekend. People came and went continually: laughing, planning, working, playing, eating and well...eating some more. At one point we had thirty people moving about like too many fish in an overcrowded tank. Outdoor dining was intercepted by drizzly cold weather. But the wedding was on!

Susan wore her new black dress with cream-colored flowers that embraced her neck. Of course, she suffered all her usual issues, like aches and pains, swollen feet and the feeling of cold. And rightly so, we have been twenty degrees below the average all week. It has been overcast and misty, not good conditions for an arthritic sundowners senior citizen. But she attended the wedding and participated (to some degree) in most of the festivities, even when she wasn’t exactly sure why she was there or for whom we were celebrating. Good job, Susan.

What she most looked forward to was the visit from Stefanie, her youngest daughter. I think she pushed herself to stay up and sit and talk because Stefanie was here and Susan was happy about that. She misses Stefanie when she is not here, but almost forgets how to enjoy their time together when she does visit. Still, Stefanie was clearly her favorite part of the weekend.




It is over now, things cleaned up, centerpieces taken down and put away. The house is somber as Katrina and her Kyle prepare the trip into their future. Their departure (in four hours) will create an empty space here for Jeff and myself to attempt to rework. My brain wants to sob, so I redirect my heart into rejoicing with anticipation of the adventures and joy Katrina and Kyle have ahead of them. And those of us left behind will just keep going on for now- with Susan.

As for Susan, she doesn’t remember yesterdays wedding, days of company, or any of the other moments we all shared this weekend. She likes the flowers though, the wedding flowers that are scattered prettily about the house attempting to cheer us up. Likely they won’t, but perhaps the aroma of the fresh sweet buds will at least bring a bit of fresh air into her life.

Not Expecting the Expected

Ok. So they told us to expect more strokes and/or seizures with Susan, but we still weren’t expecting it. The fact that she had been quietly in her room for several hours did not arouse any concerns. Sunday was, after all, overcast! Along with being out of sorts, overcast days make Susan want to sleep more. That was what I thought as the time ticked on in the house and Susan did not come out to wander around, as she had been doing all morning and early afternoon.

Jeff and I had accepted an invitation to dinner. We don’t do that very often these days. Kyle and Ashli had agreed to watch Susan. I was definitely looking forward to getting out and socializing like normal folk. As Kyle and I went over the details of caring for Grandma that evening, he mentioned that she had slept long enough and he would be waking her up to eat. He immediately began preparing her something he knew she would like and we left for dinner. Free at last! Our wheels had only been rolling a few miles when our cell chimed. So soon? It was not like Kyle and Ashli to call us when we are out.

When Susan would not come out to get her supper, Kyle used a credit card to enter her private domain. He found her lying on the floor. After hearing their description of her condition and the circumstances that they found her in, we were convinced that it was a repeat event of her last episode. Kyle and Ashli felt sure that it was another TIA (mini stroke). She couldn’t sit up in the chair, had to be carried to the bathroom,
urinated on herself and was weak and confused. The good news was that she still had an appetite and was not injured by the fall.

Yesterday Susan fell four times. She kept blaming her falls on the dumb chair, the stupid bed or her clumsy shoes. I suppose that made her feel better; but not the rest of us. We couldn’t convince her not to lock her door that evening, which made her harder to reach each time she fell. After the last fall sometime during the late night, Kyle chose the only option left: he took her door off the hinges to prevent her from shutting and locking it again.

Needless to say, she doesn’t like a room with no doors, but we can keep a closer eye on her until we can figure out a better option. We have thought about the doors that are sliced in half that are often used at day cares. She could still lock the bottom and we could see in the top. Perhaps another option might be a door with a little window that didn’t totally interfere with her privacy. We haven’t figured this one out yet, but we will; we always do. Any suggestions?

An Evening with Susan

So, Susan is wondering where Stefanie is. “Have you seen her, Karen?” she asks me when she catches me in the hallway. “Stefanie is grown up. She lives with her family in Washington,” I remind her. She looks surprised. “What is she doing in Washington DC?” She asks. “Washington State, Mom.” I remind her again this evening. Concerned about her youngest child’s welfare, she insists on talking to her. I look at the time. If I wait another hour the call will be free; but knowing Susan wouldn’t understand that concept, I dial Stefanie’s number.

After handing the phone to Susan I head to the kitchen to load the dishwasher. I hear some of Susan’s conversation as she questions Stefanie about her life. Eventually she is repeating Stefanie’s words, as if trying to process them. “You are coming on Wednesday? Coming here- to where I live? Who is coming with you? How long can you stay? I can’t wait! Bring me some seeds to plant. Don’t forget.” Incidentally, Susan may forget a lot of things, but she never ever forgets to ask her children to bring (or send) her seeds or plants.

Susan’s voice suddenly changes to concern, “Phillip? Hospital? Tests? Well, what did the tests say? Oh, he is waiting for the tests to come back?” She attempts to clarify what Stefanie might be telling her about Phillips apparent condition. Eventually she repeats her request for seeds and hangs up the phone.

“Stefanie is coming!” she announces, as if I didn’t know. “When?” I ask, more to test her memory than mine. Eleven days! She informs me. Obviously her info is crossed since Stefanie is coming in six days to attend Katrina’s wedding that is on the eleventh. “Mom,” I wonder, “what did she say about Phillip?” “Phillip?” she tries to remember. “Did she say something about him being sick and having tests run?” I question. “No,” she is suddenly sure, “he is coming here! That is what she said. He is bringing seeds and plants for me!” “No Mom, I don’t think so.” I respond quickly, not wanting her to get her hopes up. “Yes Karen. He is coming! He is bringing plants and he will transplant them for me whether he likes it or not!” she declares. Whatever. I don’t respond. No use.

I walk into the living room where she looks up at me inquisitively, “Karen, have you seen Stefanie?” I look at her in disbelief that she could have forgotten everything about the last thirty minutes so quickly. “Let’s go outside and get you some flowers,” I bribe. I have tried to get her out into the beautiful weather all day, but the promise of flowers- works. We clip roses that she takes back inside to her alter- many roses, in fact. When I come in to check on her I noticed that my vase holding my one camellia is missing from the kitchen. “Mom, why did you take my flower vase? Weren’t thirteen roses enough for you?” I walk to her bedroom where, as I suspected, my vase is sitting by her Virgin Mary.

Susan went to her room without a big fuss tonight. She seemed to have a sort of contentment about her, after all, her room is filled with roses and two of her children will be here in eleven days with seeds and plants to add to her collection!(not) Sweet dreams Susan.