Teeter -totter

Whatever was ailing Susan these past few months is gone! I mean, the decline in her health has turned its wheels and is now driving upwards. She is energetic, hungry and talkative. The sleeping away most of her life and complaining of pain throughout her body- gone! I realize that ups and downs are just a part of this illness that Susan suffers; obviously this would be the up side for her.

Her up seems to be my down. We are on a sort-of a teeter- totter here. Frankly, it was so much more peaceful about the house when she was not so well. Sad, I know, but true. She didn’t have the energy to boss us around and sneak up all hours of the night and still get into things throughout the entire day. There was no cursing, no screaming, and no fighting. Things have all flipped back around now and Susan is up- up and about and back to work managing everything and everyone around her.

It takes me back to playgrounds of my childhood when teeter tottering made for fun and thrills on the playground yard. With the exception of when, on the other end of the totter, was someone I wasn’t so sure that I trusted. I loved the thrill of the up side, me on top- them planted securely on the ground! Often my fun was overshadowed by my fear that my teeter- totter partner would jump off without any warning, causing gravity to slam my end of the teeter straight to the ground! For all of you who share this memory with me, you know that the worst part was the plop of my bony butt as I hit the seat. I dreaded that tailbone pain so much that I often spent my time at the top with one foot dangling lower than the other in preparation of the totters’ antics. From that position I was more prepared to stop the fall downward and prevent the blow to my rear end.

So here we are, Susan and I, teeter- tottering through life- life, that is, as we know it around here. Suddenly I realize that I have forgotten to dangle my foot these past few months! What was I thinking? My complacency has made me vulnerable. Naturally than, I was totally unprepared for the dreaded plop! Consequently, this downfall is causing me a pain in the… well, you know.

Don’t get me wrong now; physically she is doing fabulous, but mentally, not so much. Like yesterday when she spent the morning looking for her truck and preparing to pay her rent. None of my answers satisfied her concern over these things. We took her along as we ran minor errands in town. Her voice from the back seat was non-stop chatter about stopping at the nearest police station to make a stolen truck report. And the office! When were we going to stop there so she could pay up, she wondered aloud. No matter what we (in the front seat) were talking about, she was sure it was about her business. She interrupted repeatedly and when she did not get immediate answers she got louder and more demanding. When we told her that filing false reports might land her in jail, she determined we should instead head to the truck dealership to let them settle the stolen truck deal. Ahhhhh!


It is her world in her brain all based on bits of accurate memories from the past interspersed with what she sees and hears now- all colliding together in her brain to create total chaos. There is no reasoning ability left, which makes any attempts at reasoning more than just difficult; it makes it impossible. I remind myself that her brain is doing the best with what it is given. It would be similar to a computer that is attacked by a virus that jumbled all the info and deleted any files and programs so that things floated freely around and appeared on the screen randomly and in no order. What could the user do with that?

Last week she mostly stayed down and was peaceful. We were all peaceful. But Monday came! It was like a senior citizens edition of sleeping beauty. Suddenly without warning, Susan just woke up without any apparent pain. She woke up hungry and ready to fight for everything she wanted. She has fought and yelled and cussed more this week than she did for the past few months put together. She has been up all day- up at nights and has almost talked non-stop since the awakening occurred. Teeter- totter- teeter- totter

World Alzheimer's Day

Since today is World Alzheimer's Day I wanted to post this poem that recently came to our attention. Sadly, the author is identified as "unknow."

Do not ask me to remember.
Don't try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you.
To be with me at all costs.

Do not loose your patience with me.
Do not scold or curse or cry.
I can't help the way i'm acting,
Can't be different if I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'til my life is done.

-Author Unknown

This certainly speaks for itself. It reminds me to be compassionate as I participate in Susan's care. I'm not sure that in Susan's case I believe that the best of her is gone- it would be more accurate to say that a part of her is gone.

Be kind to those you love, we never know what the future holds!

Joker's Wild

If days with Susan were to be compared to the cards in a deck than today would be the Joker’s wild! She was calm when she first appeared this morning scooting through the quiet house toward the kitchen to get her morning coffee. After breakfast she quietly disappeared back into her bedroom, where I believe she was praying to her new Virgin Mary statue that Kyle brought her. (He knew she would like it, so he set it in the hall outside her door the other night. In the morning it was gone. I found it that day in her dark room sitting high up in a place of prominence upon her makeup vanity.)

After prayers she joined Katrina and I back in the main house. There, Katrina sat on the couch preparing to leave for an appointment and I stood in the kitchen on the phone. Susan shuffled up to the breakfast bar as if it were a restaurant. She ordered a hot cup of coffee. Once made, I set it on the coffee table in front of her usual spot on the couch. She sat down next to Katrina, seemingly preoccupied with sipping her hot coffee. Eventually she looked over at Katrina and said, “Who are you?” Taken back, Katrina grinned over at her grandmother of twenty-one years and queried, “Who do you think I am?” “I don’t know; I’ve never seen you before.” Susan stated in a convincing way. A short conversation followed similar to what you might have heard during a game of Clue. Katrina whispered to me when I entered the scene, “Did you hear that Mom, she doesn’t even know who I am!” I engaged in the game about who Katrina might likely be, with huge clues thrown Susan’s way, yet none of it jogged her memory in the slightest way, it seemed. How very sad.

Poor forgotten Katrina walked out the front door to head for her appointment while I (Susan's friend now; no longer her daughter-in-law) sat with Susan. A knock came immediately on the door Katrina had just exited, and in walked Susan’s regular nurses aid. When she took her usual seat next to Susan, it became immediately obvious that Susan had never seen her before either! Susan looked at her suspiciously as she sipped her still hot coffee. When it appeared the cup was empty, the aid reluctantly mentioned that it was now time for a shower. She had learned by experience how Susan reacts when faced with a shower! Snap- crackle- pop went Susan’s mouth!

I have learned to just start moving in that direction without arguing back, so I headed for Susan’s bedroom to choose her clothes. She knew what I was doing and became immediately verbally abusive as she yelled at me not to do it! She is not taking a shower! She is sick! Forget it! “Don’t do it, Karen! Don’t do it!” She screeched as she jumped up from her seat and followed me into her room, where I stood at her closet choosing a cozy semi-warm outfit for her to wear after the shower. She yelled abusive things that I care not to repeat. I spoke calmly but firmly back to her, letting her know that bullying doesn’t work with me and that she would have a shower whether she liked it or not. We all know that when shower time is all said and done, Susan always feels better.

I was baffled by her extreme anger as she followed me into the bathroom where I was hanging her clothes behind the door. As I reached into the linen closet for a washcloth and towel, Susan snatched up the clothes to return them back to her bedroom. That was her way of protesting the shower. But lucky for all of us, the aid and I have gotten this routine down to a science, so letting her leave the bathroom was not an option. As is become too often necessary, we de-robed her as she fought and screamed like a child not wanting a bath. She grabbed at her clothes and even slipped them back on herself a time or two, until finally she stood naked and mad. Before it was over she streaked back through the hall toward her room (as usual) to secure her door. After all, I might have wanted to go in there while she was in that shower. Silly her. Truth is, all I wanted was that ten minutes of peace and quiet without her, without her stuff and without her stinky room.

Once we all survived the shower trauma and Susan had eaten lunch, she discovered that her keys were missing. She looked around for them; but mostly she looked suspiciously at me for them. I really really didn’t want to play ‘Lost Keys’ again, so I simply said, “How would I know where your keys are? You wouldn’t let me touch them. You wanted to be in charge so figure out where you put them.” She looked high and low and in and out and mostly -at me, but I didn’t budge. Finally her eyes caught sight of a coffee table bowl with glass balls in it and her face darkened as her hands lunged forward-“Damn keys!*#~*..#@,” she cussed as she yanked them up and angrily threw them at the ground next to my feet. I picked them up and tossed them across the room toward her hallway while stating, “There, now go to your room and don’t come back out until you can be nice!” She may never come out at this rate! :)

Repeat Grief

There are certain major events in life that are so difficult to walk through that we are often not even sure if we will survive them- or if our hearts will. The death of someone we love is often faced with disbelief and deep grief as we struggle to go on. We make it through somehow. And we never wish it on anyone else, let alone on our selves- again and again repeatedly. Yet this is how Alzheimer’s seems to be affecting Susan. She suffers the repeated discovery of the death of her husband and her mother.

It seems to be almost a daily thing now, this discovering that her loved ones have died. Last week it was her husband she was looking for repeatedly; yesterday it was her mother. The scenarios vary from time to time but basically go something like this: she looks for the missing person, wonders where they are, and asks why they haven’t come home or called. In the case of her mother, she gets concerned and begins looking for her and questioning why she isn’t awake and stirring. Looking for Deogracias is different. She wonders where he is or why he isn’t in touch. Eventually her worry turns to anger and she starts to badmouth him about how he could at least have the courtesy to call her.

Depending on my mood and her mood, I handle the probing accordingly. “Where is your Dad, Karen?” she asked repeatedly throughout one morning. I played it by the book, not attempting to convince or argue a mute case, just going along with her thinking, as doctors and nurses have suggested. Somewhere along the line some professional thought this was the best approach and maybe it is. But around here, it only exasperates the problem. But I tried following the advice hoping it might work. I responded to her questions with,“Where do you think he is, Susan?” “I don’t know. He usually knocks on my door by now. Maybe he’s fishing.” She suggested. “Maybe he is,” I agreed because I like that idea. I wish he were fishing, my mind wandered. He loved to fish. If he were he would be home in a bit with a big catch
of mullet and we could have fish for dinner. It would be like the old days when he and Jeff would cast their nets as the sun came up and be home by late morning with a cooler full. I miss those days.

But he wasn’t fishing and Susan was getting angry. She resorted to badmouthing him for not being here. I didn’t want to hear her unkind words about Dad even more than I dreaded her sadness. Eventually I put a stop to the ugly reminders of the past by saying, “If he could be here- he would, but he died four years ago Mom!” “What?” she questioned, “When? How?”

Sometimes it seems that she already knows the truth but has just temporarily misplaced that memory. She often denies it and cries as if she really is learning it for the first time. One time in particular she couldn’t stop grieving and kept falling onto us crying. We felt sorry for her but had just helped her grieve the day before and the day before that. All we could do was to tell her things would be ok, that Deogracias had loved her and would be waiting for her in heaven.

Other times she is all business and wants to report his passing to the Navy, she asks how he died and where he is buried. I naturally want to come back with, “same place as yesterday Mom!” but instead I answer her questions because I know that this is real to her. Her brain has just learned that her husband has died (again) and that is sad.

This week she has been grieving her mother, who died of a stroke twelve years ago. She has searched every room of the house all hours of the day and night for “mother.” We called her Inang and I loved her too. When Susan hunts for her and swears she was just talking to her I wish it were true. But Inang has never been to Oklahoma; she was gone before we ever moved here. All of Susan’s searching has frustrated her and incidentally frustrated the rest of us as well. “Your mother has been dead for twelve years,” I eventually am forced to say, mater-of-fact. “No Karen, I am talking about my mother; you are talking about someone else!” She argues. She keeps looking and seems to especially think she might be hidden in the laundry room. Go figure.

The Haunting Smell

I admit it. Sometimes I do want to give up this whole righteous caring for Susan deal. Like right now, for example. I don’t like the gross urine smell that is permeating one half of my house. I have tried all week to wash it away, launder it out or to toss it to the road with the garbage. The culprit is evident, but where all this urine might be- is not.

At first I figured she just slept too long and couldn’t wake up to get to the bathroom. But my inspection of the bed sheets showed no familiar round wet spots. So I just stripped her of her clothes and washed everything. The smell persisted. I searched for the pee pot that might be lingering disguised as something nonchalant around her room. I found none. The bathroom itself (located directly next to her bedroom) reeked. Two showers later and all linens in the bathroom now washed, the smell clung.

Today while putting clean laundry into another bedroom in the same hall, the smell almost knocked me upside down. Infuriated, I quickly found Susan and strongly requested that she get in there and find out where the smell was coming from. What was I thinking? As if she would remember where she did it! Or threw it! Or hid it! Or whatever else she might have done.

She blamed it on those girls. What girls? There are no “girls;” only her to blame. I again removed her sheets from the bed. This time I asked her to place them in the laundry basket. As I picked up the clear laundry basket by the handle I saw toilet paper in the bottom next to a very wet rag. Afraid to know, I looked closer! Yuk! Yellow liquid dripping around my laundry basket with toilet paper as if it were an outhouse or something! Please tell me how that happened while sitting in plain view right in the hallway beside the bathroom door!

I am trying hard here. And yes, I do get discouraged when I see my house going to pieces, my dishes chipped up, the crystal broken and my carpet all polka dotted. It is not that these things are so important to me, but almost every last thing around here is being nicked, stained, stolen, broken, or (the dreaded) peed in.

Now, all the clean sheets and clothes later, yet why does the smell keep hitting me in the face when I walk into her room? Ah hah! Unbelievable! But ohh noo- not her gold shoes!

Wedding Bells Are Ringing

My daughter is getting married in five weeks. Planning her wedding has involved many meetings and appointments and shopping trips as we have thought about places, clothing and décor. Most of these events Susan would not have comprehended nor been able to tolerate, with the exception of two: cake tasting and dress shopping. Indeed, the cake tasting was her favorite of these. Just yesterday was Susan’s day as Grandmother of the bride. We took her on a girl’s day out with the main objective to find her a modern pretty dress to wear to the wedding.

It is no secret that she doesn’t have the energy for shopping that she used to have, although she can still get excited about looking at things and asking for prices. Yes, she still enjoys finding an item that she really wants or thinks she might have a need for and bringing it home with her. Yesterday was no different. She ranted and raved over furniture as we passed through on our way to and from the elevator. She suddenly wanted to look for a bed for her spare bedroom (which she doesn’t have). But we were there for a dress and spare energy was in short supply.

What we weren’t prepared for however,was how much her shopping endurance has diminished since our last girl’s day out. We chose all the pretty dresses that we thought might do well for her before we were escorted into a rather large ‘special needs’ changing room. Susan leaned on a wall and found it difficult to stand up while we slipped her little self in and out of dresses of many styles, sizes and colors, about eight in all. She liked looking into the mirror while admiring herself in the different styles, but changing in or out of them- not so much.

After a collage of dresses, we changed her back into the outfit she had worn there. She looked admiringly into the mirror and asked how much that outfit was. “Silly you,” was our only reply since we knew that any attempt at explain that this was her own outfit would likely exasperate us. Once she realized her modeling day was over, she attempted to lie down onto the dressing room bench. Instead, we directed her to sit on the seat of her walker where we wheeled her back through the stores, again passing the highly coveted furniture and eventually out to the car.

Perhaps her favorite part of shopping is going out to lunch since that is the only time she gets to drink a large glass of Pepsi. She loves eating out. But lately she is soooo slow about downing her food that we almost dread taking her. Always, she ends up with most of her meal in a to-go box that she continues to munch on and delight in as we travel from place to place.

Upon noticing that the back seat munching noise had stopped, Katrina motioned for me to look back at Grandma. She was slouching over in an awkward position with jaw down and eyes shut- obviously exhausted from her outing. At first glance she appeared dead and I stared at her face and neck to check for breathing! Whew! She was alive! Susan had truly shopped till she dropped!