The Question

"How is your mother?"

I hear it all the time.  That same question, followed by that same answer. 

"She okay," I reply trying to sound hopeful, upbeat, more energetic than I feel.  "She's hangin' in there!"

The sympathetic friends surround me with encouragement.  "You're doing a great job," they tell me.  "Your mother is so lucky to have you!"  I sigh.  It isn't easy.  It is taking its toll on my nervous system.  I am tense and stressed most of the time.

I fear that her Alzheimer's is affecting her balance.  Just a short while ago she fell for the second time today.  It frightens me to see her stumble and it terrifies me when she falls.  Each time I wonder if this is the moment that will cause injury...if this is the time she will hit her head, break her hip, cause irreparable harm that will end her life.  I want to confine her, to protect her, to limit her movement but stop myself.  For the little time she has left on Earth she deserves to walk about, to feel the sun on her face, to look out at the sky, the sunset, the stars, to move about as she wishes.  I do not want to take this away from her just so that she will be safe.  What good will come of that protection?  She might live longer but she will not be happy.  I notice that she is rocking herself to sleep in a chair on the porch and worry that it might be too cold.  I check on her and she smiles broadly.  I notice that her lip has swollen where she hit it as she fell.  I struggle to think of something...anything that I can do for her.  I offer her a cup of tea and she takes it gratefully.  I am still shaken by the image of her falling backwards and nearly hitting her head on the corner of the table.  How is it that I have become more mothering, more hovering, more careful than I was when I was raising my own children?  

I sit down for a moment to quiet myself.  I observe that my hands are shaking, my throat is tight.   I struggle to relax.  Immediately I see that Mom is making motions to rise from her chair.  I rush to assist her.  She thanks me and tells me that I was named incorrectly.  I look at her quizzically. 

"They should have name you Angel," she tells me sweetly.

"They?" I question.  It is clear that she doesn't know how I am related to her.  I press on.  "Who gave me my name?" I prompt her hoping that she will come up with the correct answer.

She frowns in concentration and answers, "I don't know."

"Who am I?" (I pray that she will remember this time.)

"Are you...are you a relative?" she inquires hesitantly.

"Yes.  I'm your daughter," I remind her.  A spark of recognition is replaced almost immediately with that expression she wears most often -- the clouding over of the eyes, the distant expression, the behavior reserved for a stranger.  She has a formality in her response.  I force a cheerful smile and go inside providing her space for her dreams, her solitude, her freedom to dwell in that place of benign forgetfulness that is neither bewildering nor a nuisance to her. It no longer bothers her. She doesn't challenge herself to remember.  I wonder if it is acceptance or simply lack of comprehensions that she has forgotten everything.  Whatever the explanation, I am happy that it doesn't cause her any angst.  She remains happy, smiling; she is oblivious to stressful events, to anger, to sorrow. Her childlike innocence carries her through her waking hours as I struggle to protect her from those things that concern me.  Where once she was, I am now.  We have traded places.  The transition, the shifting of roles is unspoken and unexpected.  Little by little, moment by moment, day by day...I have become her protector, her champion, her care giver.  I see to her survival, her remaining happiness, her comfort, her protection.

"Yes," I say with relief to those who ask  "My mother is okay today. 

Exiting

Exiting

Mom sits in her chair, sleeping, in front of the television.  It is as it has been for three weeks: this new phase, this sleeping phase, this shutting down.  There is no wandering about, no blowing the nose, no fiddling with buttons, fabrics, tissues.  There is no interest in food, in what is going on in the kitchen, in who is coming and going.  There is no discussion, interaction (other than my occasional questions as to how she feels or is she hungry, warm enough, or does she need anything.)

How I wish that I could have those things that drove me crazy only a few short weeks ago.  How I want her to get up and follow me as I leave the room like she did before.  If only she would wander about going from one spot to another with her walker.  Could she, would she walk to the door and gaze out the windows to remark about the weather?  Might she comment about the television show we are watching just once more?  Is this the new...maybe the last phase of her life?

I feel empty, resigned, and oh so sad.  Only last month I commented angrily that sometimes I don't like her anymore.  How could I have said that?!  HOW?  Just at that moment, I didn't like who she was.  Just at that moment, my inner child had risen to the surface to speak her truth.  Now I look at this shell of a person -- the mother that I knew is gone, and I mourn her passing.   Still I cling to the small spark of life that still remains within her.  All of my highbrow philosophical pronouncements, my understandings so wisely dispensed melt away as I am reduced to the child who yearns for her mother, her security blanket, her confidant, her cheerleader, her best friend, her safety net, her familial link to her identity, her nurturer, her lifeline.

Shutting down.  Exiting.  Confused.  Disinterested.  Aphasic .  Partly here and partly in another realm...the afterlife?  Is it real?  Is she already seeing glimpses of those who await her, who welcome her as she briefly visits with the promise that she will return to them soon?  I want to tie a rope around her and pull her back...yank hard so that she will return to us a whole person.  Ah, but she is too weak, too fragile, too tired.   It is time.  Yes, I know it and she knows it.  Still she fights it as we all do.  She struggles to rise from her chair complaining that she no longer has the leg strength to do so.  She experiences pain that I do not understand but still hasten to administer drugs to deaden the hurt and bring her comfort.

I cook her favorite foods but she cannot eat them or enjoy them.  She forgets what they are and no longer recognizes the difference between one food and another.  I remind her to finish the small bits of nourishment and encourage her to drink some water.  Another day passes.  Life continues.  Sometimes...well, actually, often, my eyes fill with tears and they spill over just when I least expect it.  I miss her so!  I miss her presence, her laughter, her engaging personality, her exuberance, her joy.  I miss her intelligence, her quick wit and her talents that she used to display.   I struggle to find meaning and purpose to this.  She opens her eyes, briefly, and smiles at me.  I am encouraged for the moment.  I ask her if she would like some tea and she agrees readily.  Before the water is heated she is back asleep.  I sigh deeply, despairingly and then with resignation I go about my day; walking quietly around the slumbering woman who sits in her chair, in front of the television. 

Sometimes (I almost didn't share this)

We all have dark moments and often experience them by ourselves, alone...never sharing, never, discussing. We find ourselves often judging and delivering our punishment -- sentencing ourselves to hours or even days of guilt.  For those of you who know me, you might have noticed that I try to keep myself positive, happy, and lifted by the things for which I can be grateful.  I try to fill my heart with love, my days with joy, my life with fulfillment.  BUT...Sometimes!    Every once in a while it is just too much.  I wrote this on one of those days. It is not every day, thank Goodness.  I worry and wonder if there are some who are care givers who have more of these days than not.  I want them to find their peace and joy by reaching out to them.  This is painful!  I do not like these dark moments and am grateful that they are not a daily occurrence. 

I invite you to read this even though I wasn't sure I wanted to share this with anyone.  It is difficult to show the world my momentary lapses into negativity, ugliness, anger, darkness.  But then I think to myself if I can do this, if I can tell my story truthfully. then others will understand that we all have bad days and it is okay.  So...(gulp)  here it goes. 

Sometimes

I am alone on an island. 

There is little connection, activity, interaction.  If the world were to end tomorrow and if I were among the few survivors I would not miss the things others take for granted -- a visit to the grocery store, a mall, a superstore.  I would not miss running errands, stopping at the cleaners, getting my hair done, my nails done, a pedicure.  I would not miss nights out going to an outdoor concert, a movie, a romantic unrushed dinner with my sweetheart.  I would not miss the spontaneity that we used to enjoy before...before my life changed, before I became that person, the one who altered her life, sacrificed  her schedule, her desires, her pastimes. 

I would not miss the money that we used to have before, nor would I miss pristine carpet, clean counters, sparkling bathrooms.  I wouldn't miss uninterrupted television programs. I wouldn't miss the long conversations with my husband...our alone time. I wouldn't miss my extra time to do as I pleased or even as I needed to do.

No, I wouldn't miss any of those things because I haven't had those for some time. 

I am alone on an island. 

I am feeling the joy sucked out of me.  I am looking for it, seeking it, beseeching it to return, but it is absent.  Perhaps it is buried by the stress, angst, sorrow.  I am alone even while surrounded by others. My experience is not unique and I know that there is a great deal of similarity in my experience and in my feelings with those who are going through this alone.  Others do not want to talk about it.  I understand.  .  It is taboo to discuss.  Shhhh.  Be silent.  Our thoughts are angry, dark, resentful, jealous, and ugly.

Not always, but SOMETIMES.

Not yesterday and maybe not tomorrow.

But today...TODAY!  How do I deal with today? How do I deal with this moment?

I am alone on an island. 

The tide has come in and I am drowning.  "Please, please throw me a life preserver!" I scream silently.  "Please bring me some respite.  Please understand what I am experiencing, feeling, doing.  Please allow me my inappropriate response, my quick anger, my impatience.  Please do not criticize.  I am trying to do it all, keep it all together, and endure. I am the mother, the child, the servant, the cook, the staff, the expert, and my loved one needs me.

I am The Caregiver and I am alone on an island of sadness, hopelessness, and despair....

SOMETIMES

Thirsty

I am thirsty...in fact, parched.  Oh, it is not for lack of water or other liquid.  No, it is for something, anything that will change the conversation, the mood, the tedium.  I have been here before.  It was many years ago as a young mother when I was home day after day with a newborn.  I remember my mood, my emotions, my frustration.  I yearned for adult conversation, distraction from the daily duties that filled each waking moment.  I told myself that I needed to be a perfect mother.  Perfect!  Was that even possible?  I could not live up to perfection and was sadly disappointed by my performance.  Those moments of craziness were met by confusion as my husband struggled to understand, to sympathize and to try to fix what was wrong.  How difficult those times must have been for him -- feeling helpless and yet wanting to do something, to participate and repair the disruption of his happy home.

As the saying goes, 'Life goes full circle".  Now, when Skip comes home from work he finds me in the same place where he left me.  I am sitting in the family room, TV blaring for my mother to watch and be able to hear, eyes glazed and babbling a relieved 'hello' as I greet him.  Then I tell him about my day -- about all of the things that Mom did, all of the things she didn't remember, all of the little frustrations.

I pepper my conversation with tidbit learned from all of the daytime TV programming.  "Dr. Phil said..."  or "Judge Judy was..." .  Sometimes we have a moment of excitement as I leave the room to go get dressed or answer the phone.  Often my mother sees this as an opportunity to go AWOL.  Today it was a quick exit to the door I forgot to lock.  I was folding laundry in my bedroom when I heard the hall door to her apartment open and close.  "Huh...that is odd," I said to myself.  "I thought that I heard the door close."  Then I realized that I had forgotten to lock the door that Mom tries day in and day out multiple times.  "The door is locked," I remind her.  Then she grimaces and says that she is tired and wants to go to her room.  I tell her she must stay downstairs so I can watch her and keep her safe.  She is compliant but not happy.  So, as I realized that today she seized the opportunity to 'escape' through the unlocked door I ran to stop her. Jangling jailer's keys (metaphorically speaking) I reminded my mother that she could not go upstairs alone and certainly NOT during the day. She was sad.  She walked away despondently.

Frustration makes me short-tempered.  How many times a day am I expected to explain why she can't go to her room, why her safety and my supervision is important, why sleeping too much during the day will cause her to walk around all night.  Oh how I wish  that I could let her take a nap when she wants, go upstairs at will, live independently and do as she pleases.

I remind myself that she and I are both making sacrifices...unpleasant sacrifices and we are learning to live with them. Yes, I am thirsty, but I will try to quench my thirst in small sips of companionship from phone calls to friends and family, with brief visits, and with precious moments I share alone with my husband.

Meteors

Thank you Universe for once again providing us Earthlings with a spectacular light show. The Perseid meteor shower provided us with three nights (or early mornings) of entertainment. We do it each year. It is a family tradition that dates back to our early days when the children were just wee ones. We would pack them up at 1:00 AM and drive to a dark location where we could gaze into the heavens to watch the shooting stars. How many wishes were made? So many beautiful moments and loving memories were created as we talked, gaped in awe, joked and giggled in those early hours, those magical hours, when the world is still asleep.
As our children grew and moved away, Skip and I continued the tradition alone. It was still wonderful but somehow a little empty. We missed the sleepy presence of our children. We would call them and remind them excitedly that the meteor shower was going to be on August 11th. We would check with them to see if they had watched. Then, one year, we were all in the same place again. We were together to witness the event, to join as a family (now all adults) and to reminisce silently of days gone by and to create new memories. Looking upward we "ooood" and "aaaahd" excitedly. We remarked about the neon streaks across the sky as being the very best. We complained about the humidity or clouds that hid the smaller meteors from our view. We remarked that the frogs were so loud we couldn't hear each other. Such simple joys, such ecstasy, such perfect moments!
With clear skies this year we were treated to a special opportunity of a 'burst' event. The visibility was excellent. We were joined by our children, our son-in-law and our son's girlfriend. When the time arrived we met on the driveway with folding chairs and quilts to lie on. All gazing skyward. But wait...where was Skip? He was asleep and while he assured me he would join us, he remained in bed. Sadly, the special moment was tarnished by his absence. We decided to repeat it the next night. Once again we met on the driveway. Bill...Skip...me... Where was Dorie? Where was Gregg? Where was Christina (Bill's girlfriend)? Our numbers had dwindled. Was there apathy in the troops? Were there those who valued their sleep more than an occasional spotting of a shooting star? We texted and called. "Come downstairs!" There was no response. We enjoyed the 'show'...just the three of us.
The next morning Dorie arose complaining bitterly that she missed the shower. She had turned off her phone and forgot to turn it back on at bedtime. She missed our calls, our texts, our invitations. She was devastated and miserable. She said it was like missing Christmas. I felt so sad for her, but part of me smiled inside knowing that we -- Skip and I had instilled a sense of wonder, joy, and anticipation in our children: a family treasure. We were reassured that this tradition would continue no matter where we are and who might be with us.
Last night Skip and I decided to go outside and take one more opportunity to gaze upward. We were alone. The night was filled with the noises of the summer. The skies were clear and stars were bright. The meteors were not as numerous. Our dedication to watch was not as intense. Our viewing marathon was coming to an end and it was time to go to bed. With a deep sigh, I folded my chair and returned it to the garage. Smelling of bug spray I collapsed in bed to catch up on missed hours of sleep. My dreams were filled with happy images of our children, our grandchildren and family fun. They reflected my state of mind. They comforted me and reminded me that we are blessed with something that money cannot buy. We have learned and taught that there are myriad ways to enjoy life's simple moments and they can be the most important moments in our lives.

Adjustments

She calls to me waiting patiently for me to come upstairs to her room to help her dress.  She has given up the freedom to make personal choices of what to wear.  It happened when she began mixing different colors and prints.  My own fashion sense could not tolerate this.  I justify my actions by telling myself that she will wear the same clothes every day if I don't step in.  It is not unhygienic .  I want her to look good.  I want to preserve the woman who I used to know.  "Besides." I tell myself, "When she lived independently in her retirement community, I used to get calls from the director there to advise me that my mother was wearing the same clothes day in and day out.  It was not acceptable in that community.  She was being chastised.  People were talking about it.  My mother had become 'That old lady with the stained clothes.'  I would not have that!  I hurt for her."  At the time, we made the decision to hire a care giver to come in to help her dress each morning.  Now that she lives with us, I am that person.  I help her dress.  

I am reminded of the myriad books, articles, classes, sessions that discuss the elderly.  They tell me to allow for choices, for what the parent or loved one wants.  Still, I remain inflexible, demanding that my mother comply with my rules, my choices, my expectations.  "Do this...Don't do that...this isn't safe...this is dirty...this is bad for you...this is good for you...let's go...let's not go."  I decide.  I control.  I know best.  I perform my duties efficiently, with quick words and motions.  I spare no extras. I am too busy, too stressed, too annoyed by interruptions.

I am sliding downhill.  I feel the apathy, the doldrums of repetitive behavior.  No matter what I understand, what I hear, what I know, I do not seem to be able to pull myself out of this state.  I want to be a better Care giver. I want to be a good daughter.  I want to create good quality time for the  time that my mother has left on Earth.  I berate myself for not doing this.  I excuse myself.  Sure, sure.  We all get into a rut.  Our behaviors, responses, and interactions with our care receivers become automatic, more efficient, less thoughtful after repeating them day in and day out.  It is a common human failing particularly when we are busy and distracted.  I noticed with my mother, as she slows, communicates less, and forgets more, I interact with her less and less.  I give her a plate of food without saying anything beyond, "Your dinner is ready."  I turn and prepare my meal and sometimes take it to the family room to continue working on my lap top.  She eats alone, in silence.

It has been weeks of monotony.  I am struggling to find a spark that lights my motivation to change things; but I am busy, I am stressed with work, with schedules, with life.  Then suddenly it happens.  I hear a comment from someone who is also caring for her mother.  She says that she has a rule that no matter how many times her mother repeats herself or asks the same question, she and her husband answer like it is the first time.  Ah!  This is something to which I can relate.  I am a rule follower.  I like rules.  I too, can make rules.  Suddenly I am back!  I have purpose.  I am enthusiastic.  I create a personal rule book.  If Mom does this, I do that.  If Mom says this, I respond with that.  My mental rule book fills with actions and behaviors, counteractions and counter behaviors.  Suddenly I am patient, conversant, focused and dedicated.  

I am amazed that such a simple comment from a stranger has given me incentive to do it better, to be better, to enjoy better.  

Mom and I are sitting in the family room watching the Olympics together.  She is silent as I work and look up occasionally to see something.  There is an equestrian event being broadcast.  The horses are jumping in a steeplechase event and my mother seems to be watching with interest.  Of course she is silent but I see that she is engaged.  I remark that the horse is beautiful and she turns to me with an enthusiastic smile. 

"If I were there, I would kiss that horse on the nose!" She tells me.

"Do you like horses?" I ask.

"Oh yes.  When I was a little girl my father had horses and one of them was named Baby.  He would let me feed Baby a sugar cube.  Baby would take it gently from my palm.  He had such a soft upper lip."  I ask her more questions about Baby and suddenly she is reminiscing, telling me all about her father, their home, the horses, her life.  It is a wonderful moment that we share.  A few moments later, she repeats herself and tells me all of the same things again.  I smile to myself quoting rule #2 in my imagined rule book.  "Take in the information like it is brand new.  I am hearing it for the first time.  React with interest, with enthusiasm, with comments," I counsel.  A few minutes later she repeats the same words and stories once again.  Three more times...I continue to respond as if it is the first time I have heard it.  I am thrilled with the results.  It is pleasant.  I am smiling, Mom is smiling.  I get up and walk away to do something and feel like a heavy weight has been lifted off of my shoulders.  There is no frustration, anger, impatience.  I am okay with the fact that Mom has repeated herself.  What difference does it make?  I remind myself that children repeat themselves.  Children ask the same question over and over.  We do not harbor grievances for having to answer over and over, so why should we with the elderly?  

I do not know how long this will last -- my newfound patience.  I will take one day at a time.  Again, I remind myself that I am imperfect and do not set up unreal expectations.  I make a silent agreement with myself that I will do my very best.  That is all that I can do.  I have just given myself permission to make mistakes.  Immediately, I feel my shoulders relax.  It is as though the Creator has whispered in my ear telling me that it is okay.  I take a deep breath and go fix lunch for my mother and for me. Today we will dine together and I will talk about the butterflies we see out the window, the pretty sky, the tasty food, or whatever else might come to mind.  We will repeat ourselves and I will not care.  I will do so because this is what I can do today to make my mother's day the very best that it can be. 

Tomatoes and Pies and Cookies, OH MY!

Our son presented us with a bag of Roma tomatoes the other day.  I had just been thinking about making a tomato pie, so when I saw these beauties grown at a friend's farm I was quite pleased.  Unfortunately it was a busy week and I didn't get around to making the pie.  Every day, I would practically hear the tomatoes ripening and calling to me.   Finally I found two free minutes and thought that I would begin preparing the pie.  Oh wait...first I would go feed my friends' cats. (My friends were out of town for a few days.)

I ran over to their home, opened the door and was greeted by two hungry cats.  One of them decided to curl around my feet as I was walking  and caused me to trip.  I caught myself before toppling, but not without twisting my ankle on the same foot that was trying to heal from an old break and some painful tendinitis.  Once back at home I pulled out an ice pack and treated the swelling.  Oh!  But the tomatoes were now shouting at me.  I had to make the pie.  I limped my way into the kitchen and began putting together ingredients.  I was halfway into the recipe when I discovered that I was out of a key ingredient.  Being a resourceful cook I found a substitute without losing any time whatsoever.  Putting together the special crust I felt reasonably assured that it would still be tasty.  I put it in the oven to brown while I began slicing the tomatoes.  I was rushing and didn't take adequate precautions.  Before I knew it I had sliced more than the tomatoes.  Looking at my poor finger I realized that I needed a bandage.  I ran to the bathroom cabinet and began administering first aid.  By the time I returned to the kitchen I had burned my crust -- not all of it, but the edges were definitely toasted! With most of the tomatoes sliced I couldn't scrap the project.  I had to make a new crust.  Once again, I had to use a substitute for the key ingredient and once again I assembled the crust and put it in the oven for browning.  This time I watched it very carefully.  I looked over at the previous crust and took a little nibble of the part that wasn't burnt.    Mmmm...it was delicious!  I cut away the burned edges and regarded the remaining crust.  It was made with 1 1/2 sticks of butter and I hated to throw it out.  All night long I thought about what I could do with the good part of the crust.  When I awakened this morning I had a solution.  I would crumble the crust , add sugar and coconut oil and make a crumb crust.  Then I would make a French cream coconut pie.  I forms the crumb crust and baked it until it was firm.  Meanwhile I found my recipe for a French Pastry cream.  It called for four egg yolks.  What was I going to do with the egg whites?  I finished preparing the pie and then decided that I would make chocolate meringue cookies.  I was halfway finished beating the egg whites when I discovered that I didn't have enough chocolate.  Once again, I improvised adding different ingredients to substitute for the chocolate shortage. 

Currently I am staring at a sink full of dirty dishes, a stove covered in spills and splashes, an oven covered in fingerprints, a rack of cookies cooling, a mixing bowl, spatula and beater being licked clean by my mother, dish towels strewn on the counters and a kitchen that is about 100 degrees!  I am sitting under the fan in the family room, feet up, icing my ankle and thinking that I never want to look at a bag of Roma tomatoes again!