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.