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.

Medical Facilities and Alzheimer's

Why is there not more understanding or allowance for Alzheimer’s patients (and those with similar maladies) at hospitals and other medical facilities? With the increase of Alzheimer’s on the rise surely this whole situation will be forced to change. This issue presented itself to me during Susan’s recent stay at the hospital.

My first impression of Susan's ward was an impatient nurse screeching at an elderly woman who (how dare she) was too old or forgetful to make this nurse’s job easy. Witnessing that set off alarm bells in my better thinking: would anyone be patient with Susan? Would she be treated as this other precious lady were being treated? I feared so. The next night I listened to this same nurse throw irritating comments my way about how Susan was up all night getting out of bed and securing the hospital doors and windows and how this particular nurse was forced to set up camp directly outside of Susan’s room door to keep an eye on her. (Snicker-Snicker)

Okay, so I admit that I didn’t have a lot of sympathy although I certainly understood where she was coming from. After all, I have practically spent the past year watching and guarding and herding Susan into the right places and activities at all the right times, regardless of what I would rather have been doing or often needed to be getting done. So yes, I understood her dilemma, but did she understand Susan’s? Susan was not her only patient just as she is not the only person in my life. But Susan has Alzheimer’s and the nurse should have training.

Next, came the dreaded annoyance of things Susan didn’t understand, like: tubes, machines, hook-ups and needles. She spent hours complaining about them and pulling at such things as heart monitors, intravenous lines and oxygen tubes until eventually she had loosened off and unhooked anything she could. No matter how hard I (or hospital staff) tried to explain their importance, Susan only cared that she didn’t want them hooked up to her self. Needless to say, she finally had every last one of them where she wanted them- out of her business!

Susan sat snugly pleased while alarms sounded and staff came to check to see what she had done -this time. Amazingly enough, all of this was done while she wore a posey (a restraining vest that keeps her from getting out of bed). Without the posey she would have likely been lost in the hospital somewhere or perhaps even in the parking lot looking for her car. So what is a hospital to do? And what are Alzheimer’s folks to do?

There is inevitably a moment in each hospital stay when Susan's antics climax. It is the moment I have come to expect, but will never stop dreading. Last time, it was the night she ripped her intravenous lines out of her arm and broke her security bed all in the same night. Kiara and I arrived early the next morning only to discovered blood all over Susan’s gown as she sat poseyed in a chair while a repair man worked frantically on her bed.

We learned of her antics this time by a nighttime phone call placed by the on duty nurse at Susan’s ward. She calmly asked us to return her call, stated that things were fine but she just wanted to update us. Trust me, we know that code and can read between the lines. Jeff called her back as soon as we heard the message and learned the latest. This time Susan had gotten hold of a pair of scissors and cut her catheter!

The day before this “cutting loose,” I had spent the day with her in the hospital room while she drove me away because of her obsession with getting that “stupid shit thing” out of her. After all, the doctor had not ordered it (no matter what I said). It didn’t belong and she didn’t need it. Actually they had ordered it in the emergency room the first night and left it in because they didn’t want her getting up and risking another fall.

Well, after the call that night from the nurse, who admitted that they had all been shaken up when they discovered what she had done, I noticed that a catheter no longer burdened Susan. Either the staff didn’t want to risk what might happen if they reinserted the dreaded catheter or Susan’s ‘discontinuance’ of its use had made that decision for them. Whatever the case- Susan got her way- no more catheters for her.

Sadly, when it was time for Susan to be released and the doctor felt that she needed a short stay in a rehab unit to build walking strength, nobody would accept her. No facilities to handle walkers? No rehab for extreme Alzheimer’s patients? I hope that none of these precious human beings are ever in accidents since everyone is afraid of them and afraid of lawsuits regarding them. One facility that was brave enough to evaluate her said there are strict laws against restraints’. We certainly would have a lawsuit if we restrained her at home as well, but we manage. And now she is home again, weak, limping and one foot dragging. No rehab for Susan- she has Alzheimer’s.

Headed Home From the Hospital

Susan is coming home from the hospital today. I am concerned and unsure about how she will take this transition. Ordinarily it might not present itself as a big deal, but this is for sure not ordinary- not this mother-in-law of mine who suffers from Alzheimer’s- nope, nothing ordinary about it. For Susan, thirteen days is a long time and a lot can be forgotten in that time. For you and me that is barely two weeks; but for her brain it is another time and place- another set of memories ago (likely forgotten ones).

It may seem odd to question: Will she remember her room? The house? Will she sleep tonight? Will she insist on going home (wherever in her brain that may be tonight)? Will she feel any sense of security and comfort at being in her bedroom and back in our home (and her home for the past year). In about an hour we will take her out of the hospital and begin the 23-mile ride home. Will she even know what is going on? I realize she will know something and feel something and desire something, but it will likely be based on inaccuracies. We shall see. I feel silly that I am apprehensive and a little nervous about bringing her home. Will I sleep tonight? Will she be nice and passive or will she be pushy and insistent? The answers to all of the uncertainties do matter to the rest of us living here.

It seems obvious to all of the doctors, nurses and social workers at the hospital that she should be in a long-term care facility. For me it seems obvious that we are getting closer to that decision, but I am not so sure that we are there yet. With all the new diagnosis’ these past few weeks (congestive heart failure, hardening of the arteries, full degenerative disk disease, shingles, drop foot …) along with all her past diagnosis’ I can’t help but fear that what we are witnessing respectfully is her descent. Others looking on see what is obvious, but perhaps to Jeff, to Katrina, to Kyle and to myself, it is hard to admit that she will not bounce back and regain her fight. I hear myself whisper inside my head, "But maybe she will; maybe she will.”

Hospital Stay

Just as I feared, I am spending this week at the hospital with Susan. We found her on the floor Sunday afternoon beside her bed, awake but unable to get up. It seems that she may have had another seizure. Upon finding her, we questioned her and checked her over before deciding that she should go into the kitchen to eat. It didn’t take long to notice that things weren’t right with her: she wouldn’t sit up straight in the chair, she leaned back as if she were reclining, ate slowly and made a mess. I ran through the gamut of tests that had become common last week. Move your arm- leg- mouth, smile, wave. She did it all.

What I found odd was her lean toward the right- her head, her waist; her legs all favored the right. She was sweet and sat in the chair eating and enjoying the view out the window. She could walk, but slowly and unsteadily. The more we watched her the more we realized this could not wait until Monday, she needed to be seen now. That is how we ended up at the emergency room on Sunday and how Susan eventually ended up being admitted into the hospital and how I ended up here for hours each day and again each evening. Deja’ Vu. Didn’t I do this about a year ago? Same hospital- same hallway- different date.

Susan is not nice today. I don’t believe anyone has given her her meds. Makes me just want to leave her mean bossy self here at the hospital and go about enjoying my day. But here I am waiting to talk to the doctors so I will know what is going on with her. Hospitals- the doctors come when they can and if I don’t happen to be here right when they are, I will miss my only chance to speak with them. And since Susan obviously won’t understand- let alone remember a thing they say, I need to be there. And prying info from the nurses seems to annoy them, as if they have some other reason for being here and my questions interfere with all that. I know, I know, they are overworked and so on- two views from different angles and such. For sure. But this is my view.

Sleeping Susan

Susan has been limping around the house most of the week. She is complaining about the pain in her leg-to-hip joint and seems to think that it is arthritis due to the injuries she sustained in her accident forty years or so ago. She and Deogracias had a car accident when they were stationed in the Philippines back in the early seventies. Her hospital stay was extensive and she had damaged her left foot and arm and was in contraction week after week. She used to tell me about how she had hated laying flat on that bed and would eventually lift herself up on the bar that hung above her bed. I totally get that.

Yesterday the nurse concurred with Susan’s thought about it being an arthritis problem; so why then aren’t I comfortable with that? Sure, it could just be arthritis pain acting up, but would it come on so suddenly? Maybe I am not comfortble because I am noticing that along with the pain she is doing a lot of sleeping or because I have seen her appetite decrease. I thought if she quit eating so much I would be happy, but I am not comfortable with it and am not jumping for joy. I questioned her carefully this morning as she ate her small breakfast, knowing how difficult it is to get accurate information from her. She confessed to feeling weak. I hope that my concerns are for naught. I will be ringing the doctor on Monday if she is not improving.

Night Stalkers

Susan has her days and nights mixed up. Any parent can relate to the endless nights of just being awake followed with long sleepy days. I have spent the past few days knocking on Susan’s door and tempting her with fun activities we could be doing, if she were only awake. Inevitably it is that groan that floats through the closed door followed by some barely audible words that sound something like, “I’m sleepy Karen. Uhhhh….don’t want to do anything…..don’t feel well.” Eventually I get her up in time to re-warm her cold oatmeal and prepare for her some fresh jelly toast and hot coffee.

She complains of her aches and pains, but really they are the same aches and pains she always complains about: her arm, her lower back, her left leg- already diagnosed as arthritis triggered by an old injury. Just in case, I test her to ensure nothing else is going on, like having her move her left foot and hand, checking her blood pressure and temperature. Day after day things look fairly normal, except for the sleepiness. But what else should I expect? Every person in this household who was up for any reason these past few nights have reported seeing Susan’s bedroom light on or finding her wondering around the house.

The nighttime test of wills is nothing new to be sure. Susan can be found securing the house repeatedly after any person goes to bed, shuts a door, enters the kitchen or after any sort of noise or movement that she is sure must have left something undone or unsecured. A hidden camera would find a night time parade of family members checking for Susan, intermixed repeatedly with Susan herself shaking door handles and flipping light switches.

Just last night I stood in the dark hall waiting for things to go silent. I have learned that that is precisely when Susan does her duty. Right on que, as if she were following a script, her door opened and she crept down the hall toward the kitchen -or door- or thermostat. I waited with my hand over the light switch as Susan glided closer and closer, thinking she was undetected this tenth time to secure things. I stood breathless, waiting for her to be in just the right location before I flipped the switch up- lights on!- “Susan, get back to bed. The house is secure already!” I bellow loudly and purposefully. "But….." she tried. “Get to bed!” I did not allow her to indulge me in conversation.

At some point I finally fell asleep hoping Susan too had given up. But this morning after Jeff had walked the house and come back into the bedroom, he informed me that Susan had won last night. “What do you men?” I dreaded the answer. Apparently she had been up after I had sent her back that supposedly last time. She had turned on the lights in the house and moved things around in the kitchen. She wants to be in control like she always was and never fails to remind us of that.

Two nights ago I did my nightly walk through in the dark when I noticed Susan standing in the black living room peeping through the cracks in my shades onto the back patio. “Karen," she whispered in a voice resembling Nancy Drew. "There is a truck just sitting out there waiting to steal my pots.” “What are you talking about?” I asked almost curiously, as I headed toward the door where she stood hunched and peeping through the cracks. I almost bought into the whole espionage thing, making Susan and I the spies about to save the household- from the pot stealers!!

There we were side-by-side peeping, no- SPYING out into the back yard. The solar lights that surround my patio laughed back at us. “It is us, not headlights, Crazies.” I almost heard them say. Jerked back to reality, I pulled myself away from the crack in the door as I announced, “Those are solar lights around the patio that are glaring at you, and not headlights from a truck, Susan. Get to bed.” Of course she wouldn’t take my word for it. Her head found its place back in its peeping spot with her eye centered up at the crack where she apparently recognized them now as solar lights. “Well, I have to make sure.” She reassured me. More excuses. “Get to bed before you find something else to worry about.” I said in a demanding voice, hopeful. Poor Susan, so much to worry about.

Surprise Walk

Sometimes Susan surprises me. After days or weeks of refusing to do anything that I suggest, suddenly she will pop up and do something that seems grand and glorious to me, like water her plants, straighten her bedroom or go for a walk! That’s right- go for a walk!

Yesterday in fact, Susan actually walked with me for over a mile. Ok! so it really was more like a leisurely stroll down a country road, but she did it! I asked her if she wanted to go- knowing she’d likely say, “no, it’s too hot” or “too cold” or “the wind is blowing,” but I asked anyway. She surprised me; she said, “yes.”

I didn’t want to push her because I knew that if I did, it was certain to be our last walk; so I went slower than I would have liked- finding her pace- not mine.

She surprised me with her persistence. After all, it was getting a little later in the day than I would normally walk, resulting in the sun beaming down on her double layer shirts and long pants. Whenever I turned to check on her she insisted that she was fine as she kept on keeping on. She did complain about the heat, the roads, the wildlife, the time of day and many other things- but not once did she complain about the walk.

My hope that she would do it again was elevated when she began to talk about next time. Next time means that she will walk again with me- next time!!

I’ve got it all figured out, next time we will leave earlier, drive to the nearby lake and park the car close enough to eyeball. That way, if she were to get tired or dehydrated (as I feared on yesterday’s walk) we will have a cooler and a place to sit nearby. Maybe we will follow our walk with a picnic lunch. And if I want to walk some more, Susan can sit in a shady spot and sip her drink while I get more steps in. Sounds like a deal to me!

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'.

Loosing Mothers'

Mother's Day naturally found me thinking about my mother Dorothy, whom I lost to heaven five months ago. Since then I have struggled with the usual grief of loosing someone so important in my life and I have struggled with a few personal issues as well. It took me a while to shake a resentful feeling that I was feeling toward Susan. If she had not been here I could have stayed with my mother in Florida those last few weeks as she fought for her life in the hospital. Like when I first married, I found it once again hard to call her Mom, as if somehow I might betray my own mother. I had lost my Mom and Susan wasn't her, or like her. Unfairly, I found my brain resenting Susan's self-centeredness. My mind would flash back at past hurts caused by Susan always being the center of her own world; and now I struggled with the resentment of her being the center of mine. I wanted to be with my mother, not Jeff's.

Well,I have mostly dealt with those issues and I again call her Mom, knowing that doing so in no way replaces the love and respect I feel for my own mother. But as I have remember back on this past December 1st, I read over my journal entry from that day, which I will share (in part)here:

The Heaven’s Align

Susan is saying twelve Hail Mary’s and twelve Our Father's right now. As she sits in her chair and prays for my own mother who is half way across the United States on her deathbed right now, I remain silent. She is trying to feel with me and fight with me. She is asking God to keep my mother alive. We cried in the kitchen together, me thinking of my sweet mother while Susan wailed that this is about her too. She reminded me that she lost her own mother.

I know she did and I sympathise, but it is my own mother I am concerned about today, my mother who has fought through incredible obstacles these past few years. We have watched her dwindle and fight over and over while each time appearing a bit weaker and further away. But today may be her last fight, it seems. The doctor has told the family that the next few hours are critical and I know that I will not make it there to be with her in the end.

Mary and Chuck and Sandi are there. I get calls every half hour or so with updates. They say she is peaceful and weak and her breathing is slower. Mary is giving her a facial, Sandi took Shannon to a hospital sale where Shannon picked pretty jewelry that they took to Mom and placed on her- pink bracelets and jewels. Mary tells how peaceful and beautiful Mom looks and how clear her skin is, although she is freezing. Her fingertips are beginning to turn dark, which is apparently a sign that the end is closer. Pastor Joe is there with them. Chuck, who for these past few months has been encouraging Mom to fight to live, has finally receded; not because he doesn’t want Mom to fight anymore or that he is ready to let her go. But unselfishly he has asked Mary to let Mom know that it is okay, that if she passes on to another life that he will be all right. He is too broken hearted to tell her himself, but stays in the room while Mary relays this important message. Maybe that is what Mom needed to hear.

Mary tells Mom that today would be a good day if she chose it to be her last on earth since there is a celestial phenomenon in the skies tonight where two planets are very close to the moon. She tells Mom that it would be a night where we would all remember that the moon and planets came together to escort her up into the heavens.

Another call comes in. “Mom is gone,” Sandi whispers on the other end. I take the phone into my bedroom for privacy and so I don’t have to attempt to explain to Susan what she overheard. My mother, my precious only mother. My sweet gentle loving mother is gone from earth. I cry. I want to see the sky and maybe get a glimpse of my mother leaving earth, as silly as that sounds, so I sneak out my bedroom door and unto the porch where I break down and cry and look at the sky and tell my mother that I love her out loud in case she is passing my way. Diego, the dog senses my grief and sits quietly nearby, guarded, as if I might need him, and I might. My insides contract as I cry alone for my mother and look to the sky that for the first time looms over my motherless world.

I don’t know life without a mother. I don’t want to know life without a mother. But I do want my mother to be in a better place where she has no pain or struggles and where I believe she rejoins her Charlie, her own mother and her first child, my sister Starr. I know that I will join them all one day and when I do I will not be afraid. I know that I will have eternal life in heaven with God, thanks to Jesus who made that possible. This truth about Jesus is something I have always known is true and never doubted ever since I can remember. I know I don’t deserve eternal life, but that is the beauty of Jesus dying on the cross for sinners like me.Thank you Jesus.

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.

Runaway Mother

Last month Oklahoma’s Governor Henry passed the Silver Alert, an alert to handle missing dementia adults, similar to an Amber Alert for missing children. I was especially interested and frankly, relieved because I have had several incidents lately that made the thought of the possibility of losing Susan very real. She so easily gets lost. Today Susan challenged me in a new way. She literally walked out of the house with purse on arm and high heels on feet; she locked the door, walked down the long driveway and right down the road away from the house.

I knew she was looking for her car that she believed she owned. She had looked for it in the driveway earlier and upon not finding it decided she had parked it just down the street. She had been obsessed all morning with going to the bank and to Sams Club. I had repeatedly told her that we were not going anywhere today, that tomorrow was our day out and today I needed to get things done around here. Susan was persistent and her plans evolved throughout the morning. Remember, she is a fighter and doesn’t give up easily.

Her black dress shoes and the purse on her arm alerted me that Susan was on a mission. Since twisting my arm had not worked today Susan must have decided to drive herself. Not that she could actually drive anymore, but try telling her that. Saying her goodbyes she exited the front door before fidgeting several minutes with her keys in the front door locks. I chuckled at the familiar sound of her securing doors, knowing that she would be forced to come right back in after discovering no car waiting for her in the driveway.

I snuck out the back door with my camera to snap a few pictures of her looking at the cars. I thought that might give Jeff a good laugh later on. My pictures became of her backside as she walked tall and confidently, one foot in front of the other walking her further and further away. I expected her to turn back at the end of the driveway but she surprised me with her left turn that took her to a stop sign on the corner where she made a decidedly daring right turn that led her out of view of the house and into unfamiliar territory. She increasingly looked smaller and smaller as she walked on.

I hid at a distance and followed her as she braved her new world. What surprised me most, I suppose, was how she never looked back, not once. The thought of her repeating this without my being aware frightened me. Might she ask a stranger to take her to the bank? What about the wild dogs that I just saw running the streets yesterday? I followed her like a paparazzi snapping pictures of her big adventure. She never knew I was there but walked boldly forward until, thank the Lord, she came to a dead end and had no place else to go but back. Back to me where I stood like her guardian angel ready to escort her home.

The turnaround in her journey somehow created a turnaround in her mind. She now insisted that she was on her way to Cook Whitehead Ford, which her and I both know is in Florida. Obviously she hasn’t checked the walking map lately. If she had she would have known that the walk would have required a backpack and some bottled water, perhaps even a change of clothes or two.

As we strolled together laughing about her adventure she made me a promise that she would walk with me every day (now that I knew how far she could walk). I knew how quickly that promise would be forgotten but the thought of it seemed like a potentially really good idea or possibly a really bad one.

Coincidentally the big story on the evening news was the first Silver Alert, an Alzheimer’s woman across town had walked away from her home this very day. Maybe she and Susan were looking for one another. We made Susan watch the story that included police, helicopters and search dogs but ended with good Samaritans’ and a happy reunion. Susan promised she would never just run off again. Two promises in one day. We’ll see if they stick.

Everyday Feels Like Ground Hog Day

I feel like I am in the movie Groundhog Day. As in the movie, each morning that I wake up it is again Ground Hog Day. The same day continually repeats: the same events -big and small, the same conversations, the same problems and the same weather. That is how it is here in my life with Susan; each day we wake up only to repeat what happened the day before. Things may take a different twist from time to time, as there are slight variations in each day’s events. Unlike Bill Murray, who stars in the movie, it is not my alarm clock that wakes me each morning. Here, it is Susan that brings me out of my sleep and into my day; my day that will be much like yesterday, which was much like the day before and the day before that.

If Susan manages to rise before me, she ensures that I quickly follow her by making lots of loud familiar noises in the kitchen that draw me straight up in my bed and sleep no longer is an option. Usually it is the microwave that inevitably ends up on ‘fan’ instead of power. But the sound of the running fan tricks Susan into thinking that her water is being heated. Finally I hear the microwave open again and than slam back as Susan replaces her cold cup there and tries other buttons for power. Over and over this is done causing all sorts of buzzes and beeps until eventually (by chance) the right button is pushed and the water is heated for coffee. Than the usual slam- slam- slam as she again attempts to find the instant coffee that is always in the same familiar place; still she can’t seem to locate it. I feel my brain repeating the words as though mental telepathy will send them her way, “corner cupboard, Susan, corner cupboard. Get the clear jar or you will end up with lumpy coffee again.” Cupboards bang and I hear other things rattle and slam. With the vision of the dirty dishes I have seen being neatly tucked into the cupboards lately and the clean items I have found in the garbage, I feel compelled into fast motion now. I wonder as I hurry what food items Susan might attempt to prepare for her self. It is like she is the magnet and I am just a piece of scrap metal being drawn directly into the kitchen, usually before the sun is fully peeping through the windows.

Or on luckier days when I am up first, I tiptoe desperately around the kitchen as I cook the oatmeal and two separate pots of coffee (hers is decaf) along with toast or whatever else Susan and I might be having for breakfast that morning. I probably resemble a house mouse that doesn’t want to be discovered by the cat that is surely lurking nearby. No, I don’t want to be found out. Just a few more minutes of normalcy over one cup of coffee with no noise will directly determine how I can handle the rest of the morning. Each moment of peace gives me a few bolts of psychological power that boosts my ability to deal. So that is why I sneak about my own kitchen morning after morning desperately trying not to bang or pop or squeak a thing for fear that the noise of it will travel beyond the kitchen border and without fail will bring Susan scooting toward the kitchen. Nonetheless she comes right on cue.

Her daily “Good morning, Karen; Did you sleep good.” never fails to give me hope that today will be different, perhaps somewhat normal. But within a few minutes I inevitably realize that this is all just wishful thinking on my part. But I never fail to hope and wish. Breakfast is made and we eat by the window looking into the back yard. I always attempt to have a pleasant conversation, which usually starts with pointing out what a beautiful day it is outside, to which Susan agrees, but always adds, “But I am cold Karen. I am so cold that I had to get up to drink coffee to warm up my stomach.” I am sympathetic on cold days and skeptical on warm ones. I look at the layers she is wearing topped off at the neck by her silk scarf that falls haphazardly over her always-unmatched ensemble. It is cute in a way but it makes me sad, sad that this once stylish woman is now adorned with stylish things in unstylish ways. My heart grows softer when Susan’s vulnerabilities are more evident.

I know that I must be gentle and kind and protect her mostly from herself. So I linger at the table longer than I really want to because I know she wants to talk, to feel normal, like she is having breakfast with another person and having a normal conversation. Part of our conversation is normal: the weather, the food and how she feels. But the rest of it is so 'out there' that I am always tempted to get up and do something important, something real. But my heart tells me that this is important and very real in Susan’s mind. Her things are not missing, her children in other states are not about to arrive, her mother was not there last night and her husband is not fishing. Steering the conversation so that Susan is not constantly confronted with the deterioration of her memory is something I am becoming good at. Surely the thought of her own forgetfulness scares her and causes her to become more feisty and irritable, probably because she wants to fight it away.

Having a fighting spirit is not new to Susan. The sad thing is that this fighting upsets her and I worry that it threatens to worsen her condition with the stress it brings her way. She often insists on things that are not true and fights to make us believe them. When she realizes she has forgotten simple things she often screams that she is not crazy yet. She says it almost as though she feels insanity lurking but is desperately hanging on to the sanity. I don’t blame her. It must be such a scary and confusing thing that she is going through.

As the day proceeds I am bombarded with the same questions as yesterday and the same struggles as the day before. “Who is coming today? My things are missing. Someone is sneaking in when we are not home. When will Stefanie arrive? Can we pick up my car at the apartment? When will Jeff come to visit us? What are we going to eat? What are you cooking?” Déjà vu. It is Ground Hog Day again. Like Bill, I can’t seem to break through to the next day where things are not the same. I can picture myself mouthing, as Bill did, the lines that will be said next, because I know, because we’ve done this scene before. I am saying something like, “Susan isn’t really going into her room to sleep, she will be back in two minutes.” I watch my clock and she comes back into the hall right on cue as if we have rehearsed this scene over and over. “Now she is going to ask me if she took her medicine and I am going to say, ‘yes you did’.” Nothing is new. Nothing is really the same.

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.