Sugar and Spice

It appears that Susan may be having mini strokes that are causing her body to fail her in little ways, making things we all take for granted more difficult for her each day. In fact, she probably had another one this week, making coordination a daily task. It is difficult to watch and even a bit scary. This whole human frailty thing is evidenced right before our eyes. All is not lost though, to be sure. No, not here.

Susan clings to one thing that is so a part of her that I cannot imagine her ever loosing it. It is her fight! In fact, I think that fight feeds her energy force and twinkles back at the world through her eyes. Her adrenalin picks up speed and her face flashes with determination to dominate! To rule! To be the boss! Yesterday I was the springboard for her fight. As she bossed and pushed and argued every step of the way, I caught flashbacks of her dealings with her husband long ago. They co-dependently seemed to thrive on that kind of drama during their last few years together. But not me; I want none of it. That pumped up spirit only drains my life force; I thrive on gentler energies.

So basically she had a great day that wore me out physically and emotionally. Maybe it was the early apponintment time that we were trying to meet that I can blame for the whole day. Nevertheless, I had no choice in the early time of her hospital appointment. It was scheduled by Susan’s doctor and I was only notified as to when they would fit her in for the MRI scan. If she didn’t need the scan, I might have cancelled the whole thing. I certainly entertained the thought when Susan refused to put on the clothes I had laid out for her. She wanted her coffee first. I knew that she had neither concept of time nor the understanding of the importance of getting to an appointment on time. Driving all the way across the city only to be turned away because of tardiness was not something I wanted to do.

Susan didn’t care, she only wanted coffee. “The stupid shit doctor shouldn’t make my appointment this early. Tell them I will make it later on when I feel like it.” I knew better than to let her come to the breakfast table before she dressed, otherwise she would want to sit and chat and look into the back yard and refuse to hurry. She defiantly made attempt after attempt to sneak into the kitchen to get coffee. All she needed to do was slip on the outfit I had matched up for her. Over and over I gave her clear instructions as she yelled back into the otherwise sleepy house, “Just bring my coffee here! Bring it here!”

She wasn’t going to boss me, I determined. I wasn’t going to boss her, she determined. So she sat in front of her ornately engraved makeup vanity making her eyebrows darker and wider than I had ever seen them. Next, she rolled the ruby red lipstick over her lips and surrounding areas, managing to only dot her chin and teeth this time. Again, she emerged from her bedroom looking like Mademoiselle and acting like Cruella De Vil, “I will have my coffee NOW. I won’t get dressed until I have it.” That was when I made up my mind that if she had to go to the doctor in her nightgown I didn’t care. She was going and we would leave on time.

Eventually I resorted to dressing her myself. She ate her oatmeal and disinterestedly drank only a portion of her cup of coffee before we took off. Susan could hardly walk without falling and I held her hand and arm as we made our way into offices, down halls and eventually into the MRI room where I again undressed her and redressed her before the blood work and IV saga began. Her veins are harder to find these days and all the pricks and holes and collapsed veins began draining Susan of her fight. She lay weak in her chair waiting for the blood expert to make her attempt at pin-cushioning Susan’s arms and hands.

I have gotten too familiar with the stress and pain hospitals can bring to a family, and strangely perhaps, have developed my own sort of coping skills. They kicked in. I began joking with Susan as I held her arm and rubbed her shoulders. I knelt by her chair where we were face to face and tossed words her way to lighten her heart. Words to make us both forget our load. And I began to sing a melody that wouldn’t leave my mind as I looked at her for a response. I told her we must dance and sing as I hummed and moved some more. Not too soon, she was humming the tune as if she recognized it too. We kept on, the two of us alone in this cold sterile room-waiting- but finally in harmony. It took more coaxing than usual, but she began moving her shoulders...up and down… up and down…up and down. That was what I wanted, I needed, to know that she still could dance with me, that she still would. Now we are just waiting again, for results, for symptoms, for healing, for whatever comes next in this life of ours- hers- mine.

Missing Baby Saga

No matter what I say to her she will not believe that there is no baby- not here, not today. While it is true that once upon a time Susan really did have babies, and once she held them in her arms and they took naps on her bed, today is not that day.

Seriously Susan, you are seventy-three now; you do not have a newborn bay. I’m sorry, but it’s true. Even if you were forty-seven (as you have been proclaiming all day) it’s unlikely that you would be cuddling a baby girl in your arms, unless she were a grandchild.

One side of me feels sorry for her. She is so distraught over this missing child – the one she has spent the entire afternoon looking for. No doubt she totally believes that the baby was napping in her room when she disappeared. No matter how many ways I have attempted to clue her into reality today, she just isn’t buying it. I won’t be surprised if the sheriff knocks on my front door any minute ready to issue an Amber Alert.

The other side of me is cynical and tired. I mean, if she wants to be delusional than fine, but could I stay out of this one? In my attempt to spare her feelings, I have spent most of my day avoiding participating in the big “search”. My day’s allotted energy is running short. Her determination that her baby is missing is making her almost desperate to get someone to believe her- as it should- if it were real. But it is not real. Only this dilemma is real. Is anyone out there?

Katrina spent her entire evening avoiding looking for the missing child. She has things she needs to do this evening and the search
for the baby that wasn’t -never ends. Can’t find a baby that isn’t there, so Susan won’t let it end. At one point I heard Katrina in the hall telling Grandma, “Look in the mirror Grandma, you are too old to have a baby.” That produces the natural thought about what Susan does see when she looks in the mirror: Forty? Seventy-three? I admit she looks pretty good for her age, but her body is too tired to birth a child and the sagging breasts would not likely allow a baby to thrive. Her brain must control her eyes because she laughed at Katrina's suggestion as though it were a ridiculous one. Silly Katrina.

I seriously hope that when Susan awakes in the morning she will be over this baby thing, otherwise I might spend tomorrow figuring out how to cancel an Amber Alert. No, not that. Could we do something else tomorrow Susan?


(Note: Needless to say, we never found a real baby, but my granddaughter’s doll seemed to give Susan some joy. Although she knew it was a doll, she still looked at it and treated it like a real baby. Works for me.)

Happy Birthday Susan

Susan turned seventy-three this week. Although we had been telling her that her birth date was coming up, still she woke up with no idea that it was her birthday. We discussed her age over pancakes, turkey bacon and coffee. After doing some calculations of her own she concluded that she was forty something, as usual. We didn’t argue. I do have to admit that the ill-logic of it all makes me laugh; how old would that make Jeff, and where do our adult children fit into this family tree? We chose to go with the flow. Her young self was ready for a fun day; but we have learned that a good time must be brought upon Susan carefully, easily and not in abundance. Over stimulation confuses her. So we gathered our daughters and took Susan for an early birthday outing. We certainly didn’t want to keep her out too late- she turns into a pumpkin (of sorts).

She was her usual out of sorts self, but we chose laughter over frustration as the mood of the day. So when I found her seated at the front of the store chowing down on gourmet cookies that she had just purchased, I tried to be patient. Of course she swore that her stomach was empty since she had obviously not had any breakfast. The fact that we were about to go out to lunch didn’t stop her munching. I kept my eye on her as I searched for clothes she might like and each time bringing them to her for evaluation. She sat like a queen cookie monster on her throne while I, her subject, ran back and forth with bright colored shirts and bottoms. The kicking of her legs as she sat munching ensured me that her birthday had gotten off to a good start.

We chose a new restaurant as our next stop since Susan was obviously famished. That is when things let loose- all things. Her birthday attire let loose at the waist upon our approach at the restaurant. We became aware of it when we heard an alarming cry for help behind us as we stepped onto the walkway that circled between the parking lot and the front of the restaurant. The twist of our heads revealed the view of her red pleated skirt let loose and now resting at her ankles. The elastic in her skirts these days, is simply not working for her. So after the initial shock of seeing Susan standing just outside the large windows where all the diners were surely surprised by the view of her bare legs, white undies and knobby knees, we attempted a rescue of sorts. Katrina, always the quick thinker, swooped in to rescue her while the rest of us tried to control our laughter.

We were greeted at the door by amused employees who smartly seated us at the opposite end of the restaurant sparing us the embarrassment of facing our fascinated audience. While entering, Susan uttered words of frustration, shock and horror at her dilemma. Something like, “This damn skirt won’t obey me anymore. I need a pin to hold it up. Look at these shoes, they are not flattering with this skirt so high.” Honestly, I could hardly answer her because of the humor in it all, but dishonestly, I lied. I sweetly chuckled out some sort of false encouragement, like, “Oh Mom, don’t worry, everyone dresses that way these days. You look just fine.” And as we passed the amused employees who were now going out of their way to get us seated, I said what I thought she needed me to say, “Just keep your back straight and hold your head high and nobody will even notice that your skirt is trying to slip down again.” Once inside, Katrina kindly assisted Susan in the bathroom where they fixed, tugged, straightened, pulled and clipped things back into place.

After Susan filled herself with a birthday brunch as if it might be her last, we felt compelled to get something new on her bottom. This time I put her inside a dressing room where I brought her gauchos and slacks until she found one she was happy with. She wanted it so much that she hung her red skirt on the hanger and kept the brown gauchos on her self. I asked the attendant if we could just leave the slacks on and pay at the register. I really didn’t want to deal with that old red skirt ever again.

Management escorted us to the register where Susan became confused and started yelling at me and cussing about where the black pants she had worn into this store were. She exclaimed that she was not a stupid shit who would go out without bottoms on. With a new audience of everyone within hearing range, I assured her that all her new black slacks were safely at home. Okay, so I didn’t mention that the red skirt was in the dressing room garbage, but I knew that if it came home with us, surely it would find itself causing another crisis on our next outing.

At home, Susan enjoyed strawberry shortcake followed by some gifts just for her. She cried the entire time she opened her gifts, especially the box from Stefanie. Homemade gifts from her granddaughters, classic old movies, and best of all, the smartly done family slide show Stefanie had made to help Mom remember everyone. She loved it and recognized almost everyone, especially herself. The background music kept repeating itself as the slide show played over and over. I reached my hand out to an emotional Susan and invited her to dance to her life. She accepted and we swirled and twirled and spun, all the while her eyes stayed fixed on the flashing of those from her life. We danced to life- her life, my life, all of life. I was proud of her for celebrating and glad that she chose to dance.

Happy Birthday Susan.

Susan's Bedroom

I wonder whom Susan is talking to in her bedroom, or whom she thinks she is talking to. I can hear her through the wall as if she is having a conversation with somebody in there. I can’t make out the words that she is saying- only that it is her voice and that she seems calm with a matter- of -fact attitude about this conversation. I hear her clock chiming the music to the Beatle's song Yesterday. I find myself half singing the words from the song that seems so fitting right now:
“Yesterday, all my troubles seemed so far away.
Love was such an easy game to play.
Now I need a place to hide away.
Oh, I believe in yesterday.”
.

Sometimes she talks about Deogracias visiting her when she sleeps. She says that he taps her on the shoulder to get her attention. They often discuss why one of them cannot go where the other one is: heaven and earth, dead and alive. Sometimes he kisses her and tells her he misses her. When she tells us about it the next day we can tell that she misses him too. It seems that her memories are mostly good ones of him and her; the ugly part has disappeared from her brain and is replace by kindness. That is as it should be, I suppose.

Susan may have forgotten, but the rest of us remember well their ups and downs. They now seem so long ago and far away. But the clearer memories of the past remind me of how she stood firm and staunch while they were together; until the day when he was gone and she was alone. Even then she tried to be strong; but looking back it is clear how much she needed him, she just never knew it. Any memory of their separation has mercifully erased itself from her mind. So it may well be that it is He whom she is speaking with in the bedroom. Maybe he has once again come to tell her that he misses her and to ask her to come to him. One day she will, but not today.

Crystal Commode (The Antics of my Alzheimer's mother-in-law)

Susan’s homemade potty has become a real source of tension around here. To her it may make some sort of sense I suppose, to pee in a makeshift pot in the corner of her bedroom , but the rest of us will likely never ‘get it’. The thing is, we have dealt with this pee pee pot in the bedroom issue over and over again, each time thinking we have solved the problem. We have tried banning containers from her room, not letting her take drinks in there and documenting every roll of toilet paper placed in her bathroom. We have tried no drinks before bed and all the other tricks you might think of to help a bed wetter, but she is not a bed wetter. Maybe it would be easier if she was. I think I am out of tricks and good ideas.

My logic struggles to find an explanation for this behavior; I mean, is this “out house” mentality a reversion back to her childhood back in the Philippines? Perhaps. Is she too lazy or weak or scared to make her way to the bathroom that is literally only five steps from her own bedroom? I doubt it. It is just as far for her to go to the corner of her bedroom where she has inevitably placed some sort of pee pee pot to use. Confronting her with the issue tends to evoke wide eyed denials with all sorts of verbal fantasies about what its purpose there is. The fact that she won't admit it is exactly what makes me know that she knows it is wrong and could help herself if she wanted to.

If I ever worried about not having a pot to piss in, Susan has put that to bed. At first it was cups and pots being lifted from the kitchen at night. What clued me in was when the missing piss pot would reappear in the morning. The suspicion of what they might have been used for compelling the mother in me to throw them out. Who wanted to use them again? Out they went one by one;all my good dishes were ending up out on the curbside. After an embarrassing lecture about hygiene and human dignity, the problem seemed to have disappeared. We were so thankful. But one day, the dreaded smell of urine reappeared. "Why does it smell like urine in here?” I would ask suspiciously, only to get an oblivious denial of any odd smells- let alone any wrong doing.

In searching out the origin of the stench, the culprit container always unveiled itself. I have learned to spot a pee pee pot right off, no matter what shape or material it may be lurking in. Once, it was the trash can, another time it was an adorable paper gift bag with tissue paper (and now toilet paper) sitting rather nonchalantly on the floor in the corner. She even used a lovely gold Estee Lauder make up box that had been a gift from her granddaughter, Kiara. I admit, that particular pee pee pot was rather hard to recognize and took me a while to catch on to. It was so cleverly masquerading; who would have thought? Today, just when I dared to hope that we again might have this under control, I spotted the crystal candy dish in the pee pee corner. My heart sunk into my chest at the thought of the crystal commode. I seriously do not want to deal with this whole thing again.

I lived in Japan for four years, so I totally get the whole squat and squirt idea. But it seems to me that the awkward ordeal of squatting and squirting at night into a small container on the floor would be as ridiculous as walking a tight rope handcuffed and blindfolded.

I must wonder, can this behavior be blamed entirely on the Alzheimer’s disease? In all my reading about the signs and symptoms of Alzheimer’s and while learning about the stages of the disease, I have not come across anything that specifically addresses this problem that Susan presents. Perhaps nobody wants to breech this dirty subject out loud. I don't. A chat with another Baby Boomer caring for their Alzheimer’s parent might prove enlightening.

( To see how caring for Susan started see my Blog post from May 1st called 'Never Say Never'.

Two Zombies

It is nearly midnight this Thursday night and I have finally settled into bed hoping to wind down after two wild and crazy days. With my pillows all fluffed up behind my back and the reading light beside my bed highlighting the latest stack of books waiting to be explored, I sit ready to write a blog. My mind struggles to let go of what I have seen and heard and experienced these past few days, hoping to concentrate on Susan and her life here with us. I think about her doctor’s visit yesterday, her bright orange outfit that she has worn since Tuesday, her desire to help in the kitchen in hopes of hurrying dinner along when she is hungry and I remember finding her in the kitchen drinking a cup of instant coffee before the sun was up this morning. My hands wait patiently on the computer waiting for my mind to begin to organize its thoughts and tell them what to type. My overtired brain struggles in my lighted corner of this otherwise dark room and I feel almost like I am floating in a sea of thoughts. Suddenly, the midnight silence is broken with the sound of my bedroom doorknob jiggling. “No,” I scream inside my head. “I am off duty now. Come back tomorrow- or the day after!" Jiggle. Jiggle. It is Susan wandering the house, checking for neighbors and seeing to it that we are all locking our doors. She can’t stand open doors, and unlocked ones don’t allow her to rest. Mine is locked. She doesn’t get in.

My dilemma begins. My tired back looses and my feet slip into their slippers and begin walking me toward my now silent door knob. I meet Susan in the hall headed toward another locked doorknob. Shake. Shake. “Susan,” I ask, “What are you wondering around for at midnight?” “I’m looking for the baby.” She states flatly, almost as if she is really asleep. I have heard the baby story before, in fact, she has been looking for this baby for over a week now. “There is no baby. Go to bed before the boogie man gets you.” I smile as I hear myself say that. But I have no energy to say anything else. She doesn’t argue with me tonight. We resemble two zombies of the night. She turns and heads toward her room, almost as though she is thankful not to have to worry about the baby tonight. I make sure she enters her room and as the door is closing I add, “I love you.” “I love you too.” She responds just before she disappears. As I walk back toward my cozy spot in my own bed I hope that the sound of her door locking really means this is it for the night. Tomorrow will surely begin early. When does she sleep? I wonder. When do I sleep? Myself wonders back. Good night.

Never Say Never

Never say never. That is one thing I know for sure. Surely the word never is a lesson waiting to be taught, for me at least. Things I knew would never happen to me... well, you know what comes next- have. It is as though it is girl’s night out on a nearby cloud and those assembled there sip their glasses of wine as they sit watching life's players down below. They look at me. “Okay girls, here is another Chick who thinks it will never happen to her. Looks like it’s time to teach her a thing or two.” They toast to their brilliance as I, on earth, begin to eat humble pie or to experience the very thing I knew I never would. No, not me. It seems that it’s been a repetitive occurrence these past few years. Is this adulthood? I must wonder, hoping not.

For most of my married life I have been all too aware that as my husband and I are growing older, our parents are too. Over and over I proclaimed my willingness to care for those I loved: my mother and father, Jeff’s father, even my step mother and step father. I always stopped my allusions of grandeur with Jeff’s mother, Susan. It wasn’t as though I didn’t love or respect her. I did. I suppose it was more her overpowering persona as she ruled the roost that blew away any of my own confidence that any sort of assistance offered on her behalf would in any way be accepted, let alone appreciated. With that clear, I was able to easily say “never”. I could care for all the rest, but never for Susan. Even if I were one day inclined to do so, surely her controlling dominance would make it impossible.

Ironically, that is where I am right now, lost in my own Never Never Land. That’s right. My days are now spent mostly caring for Susan. She has Alzheimer’s. Life these days seems to resemble a roller coaster neatly seated with a variety of emotions as it whips it's way up and down the valleys and peaks of each day. The lashings of emotions are not just mine, but are Susan’s as well. Honestly, I am not sure where to draw the line as to where Alzheimer's stops and where it is simply just her being Susan. No matter the cause, each day is bound to reveal emotion driven behavior from every realm of the emotional spectrum. Today for example, was touched by confusion, happiness, excitement,nervousness and anger; which incidentally, is usually the case.

We began with Susan’s morning cheer interjected into my self willed grumpiness. I was already impatient at the barrage of questions and answers we were about to go through. A daily re-orienting, if you will. “Did you see Jeff? Where’s Phillip? Can we go to the bank? Is my new car ready for me to pick up? If the nurse calls tell her I can’t shower today because I don’t feel well. Can I be in charge of my own medicine?” I politely answer the same questions the first two times they are asked each day. “Jeff lives here. This is his house. You see him every day. Phillip lives in Florida. You don’t have a driver’s license and there is no new car. We use mine. I drive. You will shower tomorrow. No nurse comes today.” Eventually I don’t want to explain this anymore.

Later, at the garden center we cheerfully oohed and aahed over flowers and pots as we planned and plotted our spring garden. It has to be Susan’s green thumb and her love of flowering plants that put her in her element in a plant nursery. There she had a mission and seemed to be excited by all the blooms and colors that abound. She seemed like her old self and our conversations were nearly normal.

Our next stop, the department store, produced no new pants for Susan as I had hoped, but was overflowing with giggles and laughter because of Susan’s gassy butt noises and her silly reaction to them. She had me laughing so hard that I nearly wet my pants. There we stood with legs crossed and bending over trying to contain our silliness as we searched the accessory department for just the right scarf for Susan. After trying on many pinks and blues she finally settled on a green scarf with soft fabric that she hoped would keep her neck warm as the spring breeze was in the air. With Susan’s neck now draped in pretty green and miniature pink roses at her side we headed for home.

Home is where Susan became slightly confused and fidgety as the evening dimness rolled into an already overcast sky. Susan doesn't do well with nights and darkness. The threat of evening automatically flips on Susan’s shut down-turn off-lock up mode as though she is head security guard over a top secret building. Our unusually lovely day ended with Susan nervously pacing between windows and doors like a dog waiting to be let out. Only Susan doesn’t want out. She doesn’t want to see out and she doesn’t even seem to want to know that the outside exists. Not tonight; not any night. But I do. I need to know the rest of the world is out there. I need to know that I am not sentenced to life in doors with Susan. I want to know that this home will again see the sunshine in its windows. That I will run freely through life’s meadows without Susan pulling me back and locking me in. I won’t say that I would never want a day like today again. It was one of the better ones; besides I know better than to say never.