Last Day Stunt

Luckily Susan saved her latest stunt for the last day of our week alone together. If she had done this on the first day, I might have followed Jeff to the airport and taken a flight to somewhere- anywhere! But she didn’t. She saved the best for last. Susan is smart like that.

Yesterday morning was fairly normal; Susan ate her breakfast while discussing things that were not real. I particularly remember her saying that she had filled out an application for employment somewhere and that she had been asked to go in that morning. I just listened and said things like, “uh-huh” and “oh really.” The ‘professionals’ have said to play along, so I did.

I don’t know why I listened to that advice this time. Over and over again, this advice has proven not to work in Susan’s case. Probably because she is so strong willed. She does not give up once her mind is set. I repeat: Susan does not give up until she chooses to, never ever!

I had a business call and as I chatted about details I saw Susan walk through the hallway with her purse and shoes! RED ALERT! She bid me good-bye from across the room. I hurried the person on the other end of the call. Slam! Susan was out the front door! I wrapped up the call and ran for my shoes, cell phone, car keys and camera. Those are the items I have regretted not having on other such little chases. That is, me chasing Susan as she determinedly stammers her way around my neighborhood.

On this day, Susan walked to the end of my driveway, turned left, walked down the road to the stop sign and turned right. I would say she is familiar with this route, but she is not familiar with much of anything these days, so I will just say that she has chosen this route several times in the past two years. Shoes on, I ran to my car and followed her at a distance (snapping pictures along the way, as usual).

Eventually I decided to pass her by and turn around at the nearby dead end. That way she could be independent for about two more minutes before I picked her up on the way back. After doing a 180 in the car, Susan was nowhere in sight! What! Had she fallen into a ditch? I drove frantically toward where I had last seen her walking! There she was – heading up a steep driveway toward a house on a hill!


“Susan, get in this car!” I demanded. She ignored me at first and I kept demanding louder and louder. Finally she gave me the ‘I’ve got this under control nod’ while waving me to wait for her. She walked onward and upward. “Susan, no!" I yelled in a desperate raspy voice. She just nodded and waved again as she confidentially approached the house!

One thing about living in the Oklahoma country is that you hardly know your neighbors; how could you when you hardly even see them. I knew the young couple who had originally built this house. It had sold several times since then. I had absolutely no idea who resided inside that door that Susan was now knocking unrelenting on. No Answer. ‘Whew!’ I thought. But Susan would not give up; there was another door on the side. She knocked on it a while.


I sat in my car at the bottom of the hill watching Susan. If I didn't know better, I might think she really did know where she was and what she was doing. I sat alone in my car, not knowing if I should laugh about this whole thing or just cry. Instead,I just snapped more pictures to prove to somebody else this really happened.

“Susan. Just come on!”I again pleaded. She gave me one last defiant look before she walked back across the front porch and to the front door again! She began knocking as though they might not have heard all her other knocks. To my surprise, this time the door crept partly open! Inside, I saw a round head and scantily dressed male trying to shoo Susan from his presence.

I jumped from the car, ran to Susan’s side and whispered that she better get herself in my car before she gets herself killed! I meant it. I moved toward the shadow at the door where I saw a full body tattoo and shaved head trying to avoid me. How funny, how could he avoid me? We were the ones that came to his unwelcoming door. I expressed my sorrow for the interruption and informed him that Susan was just confused.

I did not even want to know what we had interrupted. As I backed my car down the long steep winding driveway, I lectured Susan as to the danger she had put us in. “But that was the office, Karen. I paid my rent. I’ve been there before.” She insisted. Informing her that we don’t pay rent, that is not an office, and she lives with Jeff and Me didn’t seem to register. She was tired and needed to go home and have a nap! A nap- that sounded like a wonderful idea to me! It had been a long week; but Jeff would be home tomorrow!

Alone On The Prairie

Susan and I are spending this week alone while Jeff is away at a conference in Florida. Thinking of Jeff in sunny Orlando has made it just a bit more mundane going through my daily routine. Seriously, he is feasting on seafood, delicious fish, citrus and other local specialties. He strolls to meetings under swaying palm trees, passing pools and outdoor bistros. Meanwhile at home, you will find me continually sweeping the floors under the kitchen chairs where Susan last feasted. The Little Prairie House Special for Susan and I this week is my home cooked beans and rice. And really, nothing is swaying here but Susan’s rocking chair-with her in it!

Honestly, I don’t mind Jeff’s business trips. In fact, I am happy when he gets to have a change of scenery. I got used to all of that during our military years; so these days one week is a breeze- a Florida breeze for him and a chilly Oklahoma wind for us left on the home front.

If you ask me, I think Susan gets the whole 'Jeff is out of town' concept. You know, the way children seem to know that Mommy is on the phone! They catch on real fast that when Mom is on the phone, they can get by with holy terror! When my children were small, my closest girlfriend and I made a pact that if one of our children required our attention, we would just put the phone conversation on hold and give immediate attention to the culprit. It worked! They got the message real fast that even if I was on the phone, they could still be disciplined!

Susan hasn’t gotten that message yet; I’ll be working on resending it tomorrow. Several nights ago, she spent most of the night knocking on doors while walking the halls and calling all who could hear. Her midnight enthusiasm surprised me since she had seemed so tired when she went to bed that evening. By morning, she was worn out and wanted to sleep in. That was when I went into her room to coax her up. Beside her headboard I noticed blood drippings all over the carpet. Otherwise, I saw no signs of any injury. My questions produced no answers; Susan seemed oblivious to any blood or injury. Something had happened! With Susan, these things seem to tell their own story as the clues present themselves, I have learned.

When she arrived at the kitchen table I could see dried blood that had dripped down her head and face. She seemed as surprised by it as I did. I insisted we get her showered up so that I could get a better look at her wound. She had two- one inch parallel cuts on the side of her head. The bleeding was over and there was no swelling. She seemed normal otherwise and had no idea how it had happened. Although I can imagine all sorts of scary nighttime scenarios, the fact is that whatever did happen to Susan’s head that night, will probably remain a mystery. The thought of what could have or will one day happen to her scares me; but all we can do is keep her as safe as we can.

Today she was obsessed with getting into the kitchen. First thing this morning, she poured out her whole pot of coffee that I had just perked for her and drank my caffeine-loaded variety instead! Need I tell you that it was not a good way to start the day? Imagine, me with no coffee and her jacked up with caffeine! If you are a true coffee drinker then you totally can relate to the rest of my day. She was energetic and I was not in the mood for her antics!

This day couldn’t have ended quickly enough for me. I was ready for bedtime (hers, that is) before it was even dark. It was as though we both watched out the windows for the sun to hint at setting. Me, so that I could tell her it was bedtime now. Her, so she could begin securing the house.

There is much more to tell about our first three days alone on the prairie, like her brutal fight not to let the nurse’s aid shower her today. Yes, much to tell, but at this moment I am sure that I hear someone knocking from across the house. I guess I better sneak over there and make certain that Susan is just being her unusually determined sleepless self… then again, maybe I’ll just call it a night. Morning comes awfully early around here and I need a little time to dream of myself relaxing under those Florida palm trees.

Spring Fun!

It isn’t really spring, but try telling me that yesterday! Gorgeous weather and sunny skies allowed Victoria and me to ignore the cool breeze and the 60 something temperatures! It was the greatest day around here since Katrina’s wedding, last October! As if the first decent outdoor day were not enough, it was Friday!! The only thing missing were the beaches, but that’s okay- we had the secret garden!

Yes, we really do have a secret garden! But since it is a secret, I can’t tell you its exact location. But what I can tell you is that Victoria and I visited there yesterday. Victoria has always loved the outdoors as much as I do and yesterday, she was as ready to break out into the sunshine as myself. She even remembered from last year’s adventures, what to wear.

So, when we stepped onto the back porch she was ready: garden gloves on her hands, hat atop her head and my sunglasses to shade her brown eyes! She insisted we use the red wagon for our first go-round of the property; but to visit the secret garden she chose her red-rider/ pusher. I pushed it similar to the way we would push a stroller -as she pedaled simultaneously -down- down- down- over -over- around- and in! There we were, finally in the secret garden!

As soon as we entered into the garden, she jumped off her red rider, screaming joyfully as she ran toward the circle of smashed down weeds! “Grandma! Is this where the deer sleep?” She knew my answer; I had pointed it out to her last fall. We both thought the deer were smart for choosing this secret place for cozy nights. Then we walked the perimeter of this hidden place, listening to birds, looking for nests and growth. It had been two seasons ago that we last visited, but my mind was already churning about the creative additions I could secretly make in the coming days, weeks and months.

Susan has not been here yet, I thought to myself. Perhaps I have not brought her because I fear she will not enjoy this secret the way the rest of us do. She is so serious. Having fun is something she has never been good at. I don’t even know if she has an imagination at all. Then again, sometimes she surprises me when I am least expecting her to. My mind was made up; I will bring her to the Secret Garden when things warm enough for her.

In the meantime, Victoria and I spent some time working on a hidden entry to our Secret Garden. Then, it was time to check on Susan. She was too tired to play and just wanted to spend the morning sleeping. I had hoped she would at least step outside and breathe some fresh air on this lovely day. She is missing out on all the fun!

Susan's Fashion Sense

Although we grew up in New York, my sisters and I were not preoccupied with fashion, to say the least. That is, unless one considers the present day obsession with “vintage” or “retro.” I mean, if we are talking about pre-worn, oldie but goodies and the “restructured” pieces in our wardrobe, then absolutely! In that case my sisters and myself were perhaps even the style queens! Obvious (I feel certain)to onlookers , that our shared styles were brought on by necessity. Too many girls in one house for my frugal father and our overwhelmed mother to indulge any one of us with something as impractical as more then two outfits at a time. I remember discussing my perceived need for new clothes with my father. His reply became a life lesson I never forgot: “Need? What you need are two outfits; one to wear while you wash the other and the other to wear while you wash the first one. Anything more and you are talking about want.”

My father was right and I knew it, even though it didn’t fit into my plan to purchase a new skirt. That was about the time I began honing in on my sewing skills and started making my own clothes, or at times restructuring old ones that fell second-handedly into my lap. It wasn’t until my college years when I worked part time and had a little extra cash in my hand that I actually got to choose a piece simply because I liked it. Still, my father’s practical side always overrides my thoughts of fashion grandeur that swirl in my mind whenever I visit my favorite boutiques.

It was during those same college years that I began dating Susan’s son, Jeff. I had never before been around any woman who always seemed to be dressed up: clothes, heels, nails and makeup to boot! Even the gowns Susan wore casually around her house were consistently of some luxurious fabric in bright colors that flowed as she walked across her plush red carpet. She had polyester bellbottomed pants in every color of the rainbow; all specially made to fit Susan’s petite oriental physique.

The way I saw it was that if Fashion Diva's did shoes, then Susan surely was one! Even her gold house-slippers screamed, "Look at me!" I had little understanding of what I viewed as a secret society. And if this "Secret Society of Fashion Diva's" were real, then the only women I personally knew who were likely members (besides the piano player in our New York church),were (respectively)Miss Piggy and now, Susan. I stood in wonder of the glitz and glam of accessories unlike no others. This whole secret Diva Code eluded me altogether. While I did enjoy it in Susan, I felt no need to join the ranks myself.

It wasn’t so much that she was stylish as it was that she knew what worked for her and she spared no expense when it came to filling her closet. So, two years ago when the family saw no other option but to do a dementia forced intervention with Susan, it was evident that she had kept every item of clothing that she had styled throughout the years. It was actually an education (for practical me), to see how the quality and fabrics had held up for Susan. They were mostly all still in use, since their purchases had been more about what worked for her rather than what everyone else was wearing.

We infiltrated what clothing we could into her new smaller closet in her bedroom at our house. Sadly, as much as we (and Susan) fought change, it became clearly undeniable that much of it just wasn’t working anymore. Her bellbottomed pants (which had been hand-altered by Susan to her new smaller size) fastened in the back. That was a problem now with her impaired brain-to-hand communication. Besides, the entire rainbow of pants needed Susan’s standard two and a half inch heels to prevent them from dragging the ground; but Susan now required lower safer shoes to help keep her steady. Suddenly, her seventies-style groovy bellbottoms were slipping down her hips and dragging the ground, making her look like a little girl playing dress-up rather then the sophisticated lady that she once was. Now, the once stylish cape sleeves dragged through her food, the flexible waist skirts slid to her ankles and anything resembling zippers or hooks became unattainable stumbling blocks to her independence.

Yes, a wardrobe intervention became necessary. At one point Jeff took his mother out for a few hours while Katrina and I went through her closet removing the bellbottomed pants and replacing them with elastic waist pants. We knew that she would never rid herself of them willingly. But leaving them there for her to deal with each day meant that she would naturally put them on. In a wierd way, it was somehow sad to see them go, but the hard truth is that they just could no longer work for her. And the skirts that were several sizes too big had given us our last wardrobe error giggles. We swapped items out with things she had approved of on previous shopping trips. We still focused on her favorite reds, greens, oranges and yellows, but with simpler functions for the new girl.

But don’t worry; Susan embraces a new style now. Again, one all her own and all about her needs and desires. Although I find myself often physically dressing her these days or at least picking matching outfits from her closet and explaining to her or the aid what order they will be worn, she still accentuates them with her new persona. And, when my matching outfits bore her, she opens her own closet and mixes and matches (NOT!) her own taste to robe herself with. All of us have grown used to her new fashion and admittedly even anticipate seeing what she might be fashioning from day to day and more recently, from hour to hour. I call them Alzheimer’s clothes and lets just say, she likes them this way.



(Note: All clothing pictured on this entry show outfits put together by Susan- for Susan. One shows off her women's long johns that she often wears as pants. Another pic captures her atttempt to leave the house in her bathrobe-worn as a coat. And see how shirts are worn as scarves, rollers as hair ornaments and sunglasses indoors. Around here, it's all good!)

What's Working For Us

As this disease has progressed with Susan, we have attempted to work with it and with her to ensure her safety in our home. I hope that by sharing a few of the “solutions” that we have come up with around here, it might help others who face similar dilemmas.

Here they are:
-First, we were forced to re-activate our home security system. Now we are alerted by a jingle when outside doors and windows are opened. It is vital that I know when Susan (or anyone else) has penetrated the outside world!
-We no longer allow Susan in the kitchen. Since the entries into our kitchen are too wide for options like baby gates, we often barricade them to keep Susan out. It keeps all of us safer and helps ensure sanitation in the food area.
-Cups are color-coded. Hers are green and blue. That relieves the stress of finding them in precarious places or with teeth floating in them. The fact that she sips incessantly from the same cup all day long is no longer a worry. And lipstick covered glasses don’t gross me out in the same way they did before. It’s ok. Only she drinks from hers.
-We set her cups strategically at the front of the cupboard; if she reaches in, she easily chooses the one in the front-HERS!
-Baby guards installed on certain cupboards (including under bathroom sink) have worked great! In fact, I think it is time to add a few to new cupboards now. (Good idea Kyle C)
-A latch-lock was installed on the outside of her bedroom door. It is there for emergencies only! It has been used when she is out of control and needs a break to settle down.
-A real phone is in her bedroom that is not actually hooked up. It makes her feel normal but keeps her from calling 911 every other day!
-Her own familiar possessions furnish her room; that creates a feeling of familiarity, comfort and safety for her.
-We try to keep things in her area the same; change aggravates her senses.

-A grotto door (or wine cellar door) was installed between the bed/bath hall and the main house. It is a great option because it doesn’t close her in, yet keeps her safe from: outside doors, the kitchen, the fireplace, the pantry, chemicals and whatever else threatens her. This option became necessary as her judgment worsened and watching her 24/7 proved to be simply impossible. Now she has the freedom to roam in a safe zone.
-No drinks late at night to help keep her from having accidents in her bed, using a container in her bedroom, or being up and down all night (hasn’t worked yet, but hey, we’re trying!)
-Depends! Although she still attempts to use the toilet, this helps with incontinence.
-We hung a calendar and pegboard in her area to remind her of her schedule and what day of the week it is.
-Photos of those she is familiar with. These days she particularly enjoys older photos, not recent ones.
-We stick green and red stickers onto the power switches of her electronics to allow easy recognition of on and off switches. As usual, green means ‘go’ and red means ‘stop'.(Stefanie’s brilliant idea)
-We purposefully created nice views out the windows for Susan since she likes to look out. We put her favorite plants and bright flowers in pots that adorn her view. Also, bird feeders and birdhouses are hung within easy view, for her entertainment. We added comfortable seating areas outside where she will occasionally go sit and have a snack or a drink with another person.
-Her own chair sits in the living room for just her to use (covered with a towel). Susan is territorial and wants her own things. Besides, having her own chair keeps her little messes off the rest of the furniture.
-We had to install steps on the side of our vehicle to make it easier for her when climbing in and out.
-Our newest solution is the three-way potty. Right now it sits above Susan’s toilet with the bowl removed. The hope is that it will aid her in feeling secure on the pot and everything will start getting into the right place rather then the floors and walls. My fingers are crossed! This three-way pot can evolve as Susan’s disease does and can function as a bedside commode as well.

There are many issue we are in the process of figuring out solutions for, such as: a continually overloaded septic tank (who knows what she’s flushing!), constant accidents of all sorts on every carpet in the house (other then my personal bedroom), broken locks and door handles on most doors because of her incessant fiddling and trying wrong keys and jiggling, bathroom sanity (ugh!), window coverings (we have already had to replace every shade on the back of the house because she fiddle them to extinction and now we’re working on keeping her away from the new ones), she broke to smithereens and apparently urinated on my Japanese shoji screens. So, this whole ‘idea journal’ is definitely an ever-evolving work in progress!

Another really important issue has been her wardrobe, which originally required an almost total overhaul and continued tweaking and updating as needs present their selves. I plan to discuss this more in another entry since there is too much on the subject to include in this one.

(Note: I am reminded about the costs of simply maintaining normalcy! It can definitely be overwhelming. Just do the best you can and so will we. I’d love to know what others have tried and would be grateful for any suggestions out there.)

Contemplating Dementia

Watching Susan’s battle with dementia has forced me into a sort of inner struggle about the whole thing. I have watched in wonder and asked “why” and “how” more times then I can count. My need to understand has carried me along a trail I would likely never have traveled if it weren’t for Susan. I have read books, met with strangers, spoken to doctors and nurses about dementia theories and care, hung out in hospitals, and searched my community for support.

Then there is the dreaded concern for my own husband and children since this disease is now in their family. My journey is not over, perhaps it is just beginning; but it has carried me to a place of personal conclusions. Conclusions that may (or not) be obvious when such a disease is starring us in the face, causing my lens into the future to appear to have gotten jarred along my way- jarred into an out of focus view. All that is clear is the step we are taking at this moment on this day of this journey of ours. This journey is a lonely one at times, but as I have lifted my eyes from my own steps, I have realized that there are others walking this trail- or a trail close by. There are unexpected persons who have come alongside, expected ones who are nowhere in sight. There is a God who carries me at times. All of us are moving along. We travel it together, Susan and I, this family, our readers joining in, you and you, this world, these people.

One thing about this journey that I want all of you to embrace is the clear fact that no two will suffer the same; each will have their own journey. Yours will not be ours; ours will not be yours. I have come to understand that every Alzheimer’s journey is unique. As peculiar as this might seem, I find myself extremely thankful to know that not every stage that Susan goes through is experienced by others suffering with this disease. In fact, I am happy to know (yes, even jealous!) that many persons with Alzheimer’s remain sweet and gentle and kind throughout their struggle. I have personally theorized that much of it depends on predisposition, even though I know this isn’t totally the case. I say this perhaps because it is true with Susan. In fact, much of what she portraits and projects into our path, frankly, is indicative of how Susan always was- long before any of us whispered the word Alzheimer.

Yes, I am saying what you think I am saying, however reluctantly. “Whew!” you might be thinking if you are a reader of my blog! “Thank God!” I understand your relief totally. Yes, much of what we suffer with Susan was, in lesser degrees, always present. I am trying hard here to not offend nor to be unfair to Susan. Certainly, (before Alzheimer)she had many good traits that I admired. She lived a fairly normal productive life, had a husband and five children, good jobs, was very fashionable in her own right and could grow beautiful flowers like no other!

I guess I am trying to say that we always knew there was something ‘not exactly right’ with Susan. Retrospect is always a clearer vision and from this view I may be tempted to label her lifelong behaviors with modern terms that we often throw around too easily, like: bi-polar, obsessive/compulsive, allusions of grandeur or self-absorbed. In fact, doctors have wanted to label her past with something; but what
good does it do now to psychoanalyze the old Susan? This is now. My only purpose is to give my readers deeper understanding into her behavior and to ultimately release some fears that my tales may create. Indeed, Susan seriously has Alzheimer’s. At the same time, Susan is just Susan! We love her that way.

(This photo, taken long ago, is of Susan and her husband. Those were the good days for her, I suppose.)

Home Safe?

Poor Mr. Ollie. After being 'missing' for about a week from a local nursing home, this 78-year-old gentlemen was found dead just across the street from where he went missing! How does one go missing while in the care of a local nursing home? Is it staff error or neglect? Security failures? Lack of proper planning and/or procedures? The truth is, I know very very well how extremely difficult it can be to keep track of a dementia patient. So, he had dementia and was confused; who in his life did not know that? They have reported that the facility was locked up for security, yet he got out!

Here in Oklahoma there are presently two other senior citizens missing that I am aware of. One has been missing since sometime around Christmas, the other since last Sunday. A Silver Alert was issued for Mr. Edward (88), who left for church on Sunday and has not been seen since. Sadly, I don't even think a year has gone by since another man went missing from a local care center and was found dead in a nearby body of water. It's just NOT acceptable!

Susan has walked away from this house many times. The good thing is that I am always aware of it and deal with it accordingly. Sometimes I just walk at a safe distance behind her so she can feel independent. Other times I stop her before she leaves the property. Susan's attempts to walk off have become so routine around here that even my granddaughter knows what to do.

A few weeks ago Susan again walked off looking for her car, as usual. This time she walked in a direction she had never gone before. Camera in hand, I stood where Susan
couldn’t detect me as she confidently walked toward my neighbor’s house. Victoria (my grandaughter), ran in the house and grabbed on her walking shoes before running back out the door. She flew right past me. My heart melted as I saw her dart toward confused Susan. She gently took her hand while saying things like, “Come on, Susan. It’s this way. Turn around.” Susan complied totally with the gentle leading of her great-granddaughter. I was so proud of them both.

Susan has always come home safely. Ollie did not. Let’s pray for the others who are out there somewhere right now, probably confused and lost. I hope they come across
kind gentle loving hands that will lead them in the right direction.

(Note: I just read that the Silver Alert for Mr Ed was cancelled last night at 12:30 PM. He has apparently been found safe, but there are no details as to where he has been all week. I just hope people were good to him.)<

Thought: The idea of placing someone in a specialized home to keep them safe seems unatainable to me right now. I thinks Susan would be in more danger there then she ever is here. Unless she were drugged down- no, we don't want that.

An Abnormally Normal Day

I walked into the kitchen last evening where Susan sat at the table (her back toward me) having a late night snack that Jeff had prepared for her. Upon hearing my voice as I spoke with Jeff, she asked me to come over to where she was sitting so that she could meet me. “Come on over here, Karen, I’d like to meet you!” she insisted. Since I had spent the entire day with her, I felt no need to formally meet her or introduce myself; instead,I spoke to her from across the room. She was in a good mood and seemed to particularly want to talk about our jobs at the factory. I played along. “What do we do at the factory?” I asked. “We make clothes!” I was hoping that would be her answer so that her confusion would make a bit of crazy sense. Really, many years ago she did work for a place called Margaret Fashions. All I know about it is that she was some sort of a boss…well, like she still tries to be around here!

I woke up early this morning to find her standing completely dressed (even her shoes), at the grotto door. She spied me down the hall and began silently but frantically hand motioning me to come to her! I knew this apparent emergency or drama that was attempting to unfold itself before my tired eyes- was a fraud, and I totally didn’t want to participate! If I ignored her she would start calling my name again (as she had just done until midnight!), so I dragged myself toward her door, without getting too close.

“Karen, they took my two babies!” She informed me in a half whispered tone, one Charlie’s Angel to another. Her eyes moved from the left to the right sides of their sockets, as if ‘they’ could be nearby. “Susan…” I began, not even knowing how to engage this conversation at this too early hour of the morning. If I had the energy I might have flipped my blonde layers around and gotten in the knee bent ‘ready position’ next to Kate (I mean Susan) and helped her find the enemy that was apparently lurking close by. Instead (and not nearly as fun), I just cocked my tangled head to one side as if I hadn’t understood her completely and simply said, “Really?” She continued with, “And I have not even eaten supper yet!” “Susan, you ate supper twice last night before you went to bed. Now it is almost morning and breakfast time will come soon. Go to bed and I will let you know when breakfast is ready.” Please!

Suspiciously, she looked into her own room and pointed. “Lie down in there? That room?” she seemed puzzled, maybe even suspicious, as if I were setting a trap for her. I looked into her lit up room, which didn’t appear to have been slept in since last evening. I was thinking something like, Kate, Jacqueline or whoever you are right now, get your @**#*@#! in that room before I call Charlie on you! But I actually said, “Yes. Your room! Right there!” She again looked suspiciously into her room before pretending to play along. “Well, if you see anyone will you tell them that there is a Filipino woman down here that has not had her supper? And will they give me my two babies back?” “Okay Susan. I will tell them. In the meantime you must go rest in your room so that they will be able to find you!” I assured her, despairingly playing along.

She appeared to go to her room as I went to mine, hoping for a little bit of peace and quiet before the day really began- just a little! But I immediately began hearing little sneaky noises calling me from her end of the house. I was concerned about her waking the others too soon, so I snuck out my door and peeped around the corner just in time to see her peeping at me from around her own corner. “Get to bed!” I shouted down the hallway, hoping firmness would convince her.

Yup, another abnormally normal day around here has begun too soon! Good morning to you all!

Tunnel Vision

We have a silly tradition in our family. I don’t even now how it got started, but it seems that Jeff and the children decided it was proper tunnel etiquette or something. This is it: we literally scream our way through tunnels across the country! Silly, to be sure- but fun! Here is how it goes: as the tunnel appears, the entire family rolls down every window of the car, sticks our heads out of them and screams like crazy until we reach daylight on the other end! All the way through the tunnel our voices echo and bounce around in an unmelodious manner. Bruskly, the screeching comes to a sudden halt as we exit the tunnel leaving only our echoes to greet other travelers. We always manage to break into quiet happy giggles afterward; I couldn’t tell you why exactly, just that we do.

I suspect that what makes this tradition so fun is that it is so uncharacteristic of our otherwise ‘proper’ lives. In the darkness of the tunnel, with no one looking, we can 'let it all hang out' in a harmless way. All it ever takes is for one voice to sound the alarm, “tunnel!” and all windows are instantly put down with every head positioned silently beside the open windows anticipating the darkness of the tunnel. Then, suddenly, without hardly another breath, comes the vision of the tunnel entry! In unison we blast, “Ahhhhhhhhh!” all the way through to the other side. As the first ray of light strikes the car’s front bumper, voices halt and windows silently return to their traveling position.

We have literally screamed our way from Florida to New York, New York to Oklahoma, Ohio to Oklahoma, Oklahoma to Arizona, Texas to Alabama and every state and tunnel along the way. Probably we have left behind in each tunnel just a small load of worries, cares and frustrations.

I love to travel. Something inside me gets itching to go- to see- to experience. I always come back home refreshed and re-energized with new creative energy. But these days any type of “get away” is not so easy to come by. I often feel as though our lives are so inundated by Alzheimer’s disease that the rest of the world almost eludes us right now. It is as though the tunnel never ends, the light never reappears, and the windows never get put back to the travel position. No giggles at the end of the tunnel- not yet. Just darkness echoing our screams!

Like tonight, Susan believed her purse was stolen and she wanted to call the police. She wouldn’t let dinner proceed peacefully until she got her way. She threw curses around as if she were a drunken sailor and this were a saloon she had just happened into at port. Jeff had worked all day and was tired and I was excited that he was home. All we wanted was to enjoy a peaceful dinner together and all Susan wanted was to get us all stirred up about this imaginary robbery!

We have learned that we must choose not to let it ALL be about Susan. Frustrated with Susan’s inability to be civil, I asked Jeff not to engage her at all. I turned to Susan and firmly looked into her face while informing her that this was my house and that she would not speak that way to my husband or any of the rest of us! Next, I informed her that there would be NO cursing at this dinner table!

Although she looked at me as though she understood, she continued as though she dared anyone to stop her. She griped about the money and the black purse (which she doesn’t have) and the thieving neighbors until finally Jeff escorted her (kicking and screaming) back to her room. He locked her door and we finished our dinner in peace. We don’t see any other options when her behavior becomes so unpleasant and unruly.

We think we have learned what works and what doesn’t as time has gone on. The tricky thing is, about the time we have it figured out, something changes or worsens or we are faced with a new dilemma that requires a totally new solution. “Ahhhhhhhhhh!!”

My Prayer

Lord, cause me to walk uprightly as I travel this path. I want to have a sweet spirit and a good attitude of joy love and patience, but I am afraid that very often I fail. Perhaps most of the time. I want to learn to wait on you, Lord: Your perfect timing, Your guidance, Your plan and Your perfect will for this families life. I am afraid that my own nature is to run ahead and make my plans, attempting to make life happen my way. Yet,I am absolutely sure that your ways are unimaginably higher and better then any of my own thoughts or dreams; I want Your ways for myself, for us- Your will. I do.

Create in me a clean heart, O God,
And renew a steadfast spirit within me.
Do not cast me away from your presence,
And do not take Your Holy Spirit from me. (Psalms 51:10-11)

Renew my strength. Walk beside me, carry me, and remind me that it is ok if I cannot be everything I try to be to everyone I want to be there for. You are all that is good and wise in me. That I know for sure.

Welcome to our 2010!

Susan seems lost today. She is cold and wants coffee. Other then that, she just keeps going to bed and getting up to stare at me (as if I am supposed to stand up and start entertaining her.) Finally she asks, “Where is Inang?” (Inang means mother in tagalog- Susan’s native language from the Philippines’.) Inang is what we always called Susan’s mother, Jeff’s grandmother.

I have a choice now. I could attempt a change of subject, a redirecting of thoughts; but from my experience she always comes back to it. Or, I could just remind her of the truth and hope that she will believe me for once.

At the risk of an episode of anger or an event of great mourning, I opt for the truth. I look her in the face and firmly state, “Inang died twelve years ago!” Jump back! She looks shocked as her head jerks back and she gawks unbelieving at me. I change the subject. “Susan, the news is on. Go sit in your rocking chair and see what they say.” I suggest. “No, I’ll just go to bed.” She says numbly as she scoots toward the back of the house.

In a few minutes she glides back into the living room without any talk of Inang. She sits at the kitchen table and asks for hot coffee. I oblige.
While heating her coffee I ask, “Do you know what day it is, Susan?”
“Monday” she answers without hesitation. (It’s Wednesday)
“What month is it?” I continue.
“May,” she responds on this cold January morning. (Thought: May is her birthday month)
“What year is it?” I ask next.
“1999,” she reminds me. (Last week she told me it was 1974, so she has aged considerably this week.)

Nothing but silence fills the room for about thirty seconds.

“Is that right?” she wants to know.
“No, it is actually 2010, Susan.” I respond, almost reluctantly.
Her answer surprises me. “What? 2010? Well, that is the end of the world!”
“What?” I hoped I had heard her wrong!
“That is the end of the world!” she proclaims as if she is sure.
“Why would you say that? What do you mean?” I grill.
“It just is!” She repeats as if she knows a big secret.
“Why? Are you going to die?” I have to ask.
“I don’t know, Karen. I just heard that 2010 is the end of the world. That is what she said.” She goes on as if she is telling me a story.
“Who said that?” I ask, disbelieving.
“The lady. You know, the lady on the radio!”

So no, I don't know the lady on the radio. I don't think Susan knows the lady on the radio. Probably she just can't remember where that thought actually came from. Somewhere in her brain, floating about, popping in and out, like a lady on a radio, if I may.

Well, welcome to our 2010!

Caregivers Everywhere

This whole catastrophe in Haiti is such a sad thing to observe. Something inside of me (and probably most of you) wants to get there quickly and help out! I picture myself making my way through the rubble looking for that crying helpless person who is alone and needs me. I could bring them water, bandage their wounds, rock their babies, pray with them, build them a safe shelter, make them a comfortable bed and so on. Then I think to myself, “Isn’t that what I am doing right here?" Who needs to go to Haiti when I’ve got this needy person right here in my own home?

Like on Nine Eleven, I think this Haiti earthquake tragedy will bring out the best in people. I hope so anyway. I love seeing human beings really caring for others. It is obvious during a world crisis how much caregivers, rescuers, and workers are needed. But I say that every day all around us care giving happens. I have learned that these past five years as I have been thrown into places and situations where I have witnessed endless heroic acts that never made the headlines! Heroes caring for loved ones, not giving up on someone that the medical community or the insurance companies want to give up on. If I were to tell their stories I would have to begin by telling mine. Maybe I will attempt to do so in a forthcoming blog. But right now I just want to highlight one couple that has become heroes of Jeff’s and mine.

Ted has been Jeff’s best friend for about twenty-eight years now. Megan is his young beautiful wife. They live in Michigan and have basically devoted their days and put their own dreams on hold in their effort to care for his parents. The circumstances are complicated and the story is long and incredible, certainly too long to tell here; however, the more of the story one knows the more this act of caregiving is admirable.

Ted and his two brothers were adopted as young boys after extreme neglect and abuse and being tossed about in the foster care system. Three boys is a lot to take on no matter how you look at it, but the new parents now had three strong backs to work hard on the land. The truth is, this band of brothers were just glad to be together since hardship was something they were already too familiar with. After all, they did go to school and they had clothes and food; this was more then they had ever had before.

A friendship between Jeff and Ted began during their military years. Perhaps it was Ted’s need for a role model to look up to or Jeff's need for a true and honest friend to laugh with that brought about the bond. Whatever it was, I respected it and was always thankful they had one another. Most of this friendship has taken place long distance as we both traveled with the Air Force and eventually Ted returned to beautiful Michigan to settle.

Across the miles Jeff cheered Ted on through a marriage, the birth of his three children, and a successful career. And when his marriage failed and a painful custody battle ensued, Jeff encouraged him to fight on. So years later when we traveled to Michigan to witness his marriage to beautiful Megan, we couldn’t have been happier. He deserved something really good for a change and we all rejoiced at this breath of fresh air permeating their lives. So the recent announcement of a pregnancy gave us all the more to rejoice about!

Ted is one of those guys that you hope and pray the best for but wonder why, from birth, life keeps kicking in his bubble. It seems, he and his good-hearted wife are really devoting themselves to doing what is right. Three meals a day they make and serve to his aging parents, they rescue his dad in emergencies and keep him safe as his mind fails. They clean feces up for his mother who fails physically and refuses to properly care for her self. Although Ted has a business to run, this caring for these two very different ailments of his parents also requires a full time commitment. Ted and Megan have sat alone at the hospital bedside of their father since Ted’s mother doesn’t leave the home- apparently even when her husband might be dying.

Where are the brothers, you might wonder? It seems there are always some children who feel the obligation to ‘care’, while the others seem to be free to let their aging parents go it alone or give them up to strangers who will do the job. That appears to be the case here. There are no helpers for Ted and Megan, no compensation and no relief workers. Just two lovely people caring for those they love. I can picture Megan’s big eyes that reveal a picture of her beautiful heart. She simply melts my heart because she is so pure and loving- so lovely.

Very recently, in fact it was the week of Christmas, Ted’s mother needed surgery in order for her to live! The doctors prepared Ted and Megan not to expect her to make it through. Each day they cared for Ted’s father and sat by his mother’s bedside while the holidays came and went with no Christmas celebrations, no special gifts and no financial compensation for the time off work that his mother had requested of Ted.

This situation may not seem like such a hardship compared to others I have witnessed and certainly Ted himself would attest that he has personally experienced worse in his own young childhood. Remember, he had learned to be strong, to buck up and to turn off. But what I have not yet told you is that Christmas week was the very same week that Megan was miscarrying their child that they had rejoiced about just a few weeks earlier. Day after day, Megan served, tended and visited others while her very self was in crisis. In the hospital bathrooms she would cramp and bleed while her Ted waited. Heroes! You too might have seen some. There they are; lingering in most hospital corridors day after day, beside oxygen masks and IV hookups, waiting- praying and giving their selves to others without ‘Thank- you’s,” without rewards, without help of any kind.

They are caregivers. They are heroes. Do you know any like them?



(The pictures on this blog were all taken by Jeff or myself. We were given the gift of being the photographers at Ted and Megan's wedding. That is, all but the first photo that we are in!)

The Murmurs of A Caregiver

(My Sweetie Pie, Jeff
and myself, Karen)









What does it take to be a caregiver?
Two thoughts:
-Being in a bad place during bad circumstances.. Someone’s pain and suffering causes us to take on a role we never planned for and very likely never even considered.
-Being in the right place when the time was right. Reality is that life happens. It rarely goes as we dreamed or perfectly planned. It is real. Accidents happen, surgeries go bad, disease sets in, cancer takes over, and perfectly imperfect children are born. Care giving happens. Caregivers are the lucky ones, if I may.

Don’t get me wrong. It is not as though I am some sort of saintly caregiver prancing around with an endless smile on my face. Sorry. More likely, I am donned in those infamous yellow rubber gloves up to my elbows, wearing my hear clipped safely on top of my head, with an apron covering my clothes (as if it was a coat of armor protecting me from the days battle, which in this case is the dreaded bathroom job!) I am likely crouched beside my least favorite object in the world- a dirty toilet! In one hand I grip a much-used scrub brush and in the other a can of Lysol spray. Between gasps for fresh air intermixed with spontaneous gagging reflex noises, I am usually mumbling something about how I got elected for this job anyway, where all the others (who love Susan) are right now and something about what I too would rather be doing! About this time, my swirling thoughts are generally calculating the cost of a cleaning person to do this job for me- no, for her- no, for everyone else! Woe is me.

The truth is that care giving is a thankless forgotten job. Your kindest deeds and most heroic acts are done quietly beside dark bedsides and behind closed doors. Those who have not chosen this role are going about their lives, building their careers, enjoying unrestrained travel, undestroyed possessions and the freedom to entertain or whatever else they desire. There are days when fighting resentment is half the job. Caregivers have families and lives too, but must be prepared to put theirs on hold. I am not denying that this selfless act has its own rewards and blessings; they are just often difficult to find and often blurred out of focus. I am eternally reminded by well-meaners that the rewards in heaven are waiting; I also am very aware that I deserve nothing (from a spiritual perspective). But this blog is The Murmurs of a Caregiver- they are real- be prepared.


Sometimes my pain is for her. I sadly watch her struggle to remember and fight angrily to regain her independence. My family becomes the object of her anger, as is true with most caregivers; they are there, and so become the ones lashed out against. In her more lucid moments, I do hear her cursing those who never visit her or call. Occasionally she remembers that and it saddens her. Mostly though, the others are off the hook; she forgets. That is easy to do since the calls become more and more infrequent. There is nothing to remind her that they should care, that they are out there, somewhere. The nurses become her visitors and my children become her ‘neighbors’ and 'friends'.

(Photo: Kiara and Victoria)

At times, often when I am least expecting it, Susan expresses her gratitude to Jeff and I. She says, “Thank you. I appreciate it.” Or “I am glad I live with you and Jeff, Karen!” “I like it here!” She has a comfort zone here- a safe place- a happy home. She is well fed and things are tidy and calm. She is stimulated and encouraged to do more or to walk further or to find 'it' on her own. On the other hand, she is free to be sick, to deteriorate safely, she is not over-drugged to sedate her for our convenience. She is loved and she knows it. That’s what care giving is around here; that’s as it should be, I suppose.


(Top: Susan)

(Bottom: Kyle and Ashli)

A New Year

(Susan snuck out onto the ice covered porch)

We are in the first week of the New Year now and I am already realizing that it will be a year of changes. They are inevitable. Inside, I long for certain changes and hope that this family has the joy of seeing them come to fruition this year. Then there are those changes we aren’t particularly yearning for with hints of them already welcoming us into the New Year. Without meaning to, Susan keeps dropping big clues as to what is around this new year’s corner. I have to believe that God will give us the grace when we need it; otherwise I would head into this year of change with fear and dread.

As Susan’s disease runs havoc on her brain, her condition worsens before our eyes. It does not get easier. She requires more and more safeguarding and care giving these days. She no longer wears underwear since she has become more incontinent. That is not so bad, but she cannot generally understand that her pull-up needs to be removed when it is soiled. She cannot find simple things in front of her anymore and she does not seem to be able to perform a simple search for her lost object. Generally the item is in plain view to the rest of us. So she is always on the search for one object or another. Yesterday it was her keys and house slippers. My heart melts when she comes out of her room so childlike to announce that something is missing and (at my urging) returns repeatedly there to find an object. Eventually I inevitably accompany her on the ‘big search’ and simply point to the object in plain view and say, “right there, Susan.”

She is more hunched over, shuffles her feet again, thinks days are nights
and nights are days. The scariest change is that her confusion has become a danger to herself. Recently she came to the breakfast table with swollen eyes and red sore cheeks. She said she had been bitten by something in her bed. Finally I put two and two together and remembered the small zip-loc bag that contained those squares of automatic dishwashing soap that had been found beside the bathroom sink earlier. Somehow she had gotten under my kitchen sink, found the soaplets, and placed them in a zip-loc bag before taking them to her sink where she obviously used them as some sort of face scrub. Ouch! Her swollen face and cheeks served as warning signals to the rest of us: Don’t let her out of your sight! Not in the kitchen, for even a bite!

She has to be watched like a young child or she will: go outside in the freezing weather, slip on the ice, eat dog food, snack on rocks, wander off thinking she is headed someplace important, confront strangers, urinate in cosmetic bags, steal things that don’t belong to her, set the kitchen on fire, cram canned food from the pantry under her mattress, throw away important belongings, loose things, find things, and all sorts of other mischief! Just last night Jeff caught her in the bathroom contemplating drinking from a bottle of face scrub. We are on guard on her behalf more then ever. I wonder what changes tomorrow might bring. I hope and pray that I will be gracious and that Susan will be happy. Right now, she is.

Two Very Different Christmas'

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

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

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

Here it is from January 2009:

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

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

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

White Christmas

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

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

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

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




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

'Twas The Week Before Christmas

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








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

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

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

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

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

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

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

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

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

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

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

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

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

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

-By Karen Santiago

Happy Holidays?

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

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

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

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

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

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

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

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

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