A “Resurrection” of Memories

22 Sep

This summer offered me the special opportunity to be with loving friends for a week in Vermont.  The weather was beautiful, our environment picture-perfect, and the hospitality genuine, fun and loving.  I traveled with a friend who had lost her husband to Cancer one year ago.  Together, we chatted for 7-hours on the train going north and every day of our visit in New England, as well as our return trip on the train.  We never tired of conversation and seemed to focus so much of our discussion on our husbands.

In our exchange at the beginning of our trip, we focused on our feelings of sadness of the loss of our partners.  Hers, of course, as the physical loss of her husband to Cancer and mine, the mental loss of my spouse to Alzheimer’s.  No matter what our situations, we both felt the same grief and ache of losing our companions forever and we fully understood each other.   Seven hours of travel north was a gift for both of us to openly share what only the two of us could fully understand.   As the week advanced, however, I noticed our focus began to change.  We began to recall happy stories about our husbands, their habits, their expressions and memories of our travels with them.  Suddenly, our talk was filled with happiness, smiles and laughter.

It was not until I came home that I realized, for the first time in a long time, I was able to remember Ernie as he used to be.  Ernie came alive in my thoughts and even in my dreams. I could mentally see him during the healthier, good times. How comforting this was for me!  I pulled photos of our trips together during the good years and placed them around my home to remind me.  My counselor called this ability the resurrection — the ability to look past the sadness and pain of the more recent years of illness to the memories of the happy years.   For me, Ernie seemed to come back to life!

I have worried that my memories of my Ernie would be only of these last 6+ challenging years with his Alzheimer’s. Now, as I continue to live through Ernie’s decline with his disease, I work on replacing my sadness with a past happy memory of joy, laughter and love between us. I put a picture on my dresser of him laughing and I go back to that moment, that place, that feeling of joy that we both felt.   I am thankful to have the awareness that I CAN resurrect the good times and memories of Ernie as he really was and I know that that is what he would want me to do.

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The Clock is Running Down

6 Jul

Oh, how I wish I could wind the clock and help it to keep ticking.  Unfortunately, this clock does not come with a key, weights to pull, pendulum to swing, or a battery to replace to bring it back to life.  This particular clock is running down fast.

I feel Ernie’s time is coming sooner than later.  Yesterday, I felt it more than I ever did.  The change in his health is significant and has come on so rapidly — just as the Care Managers warned.  I didn’t want to believe that this day would come, but it is upon us.  I saw it with my own eyes, felt it in my heart, and heard it from my inner voice.  I saw it in Ernie’s eyes and felt it in his actions, as well.  Now, more than ever, I realize that each ticking moment counts.

My Ernie looked much like a little wounded bird when I arrived.  I saw him standing with a hunched posture, looking extremely thin and  leaning against a door — gazing into the family room of the Memory Care unit.  It was as if he wasn’t sure where he was going, why he was standing there or how he got there.  But, blessed as we are, he knew me when I walked up and put my arm through his arm and lead him to a quiet place for the two of us to sit and be together.   He sat down in a comfortable chair as I sat facing him on the ottoman.   Ernie suddenly surprised me when he pulled my face into his hands and gave me a tender kiss. We held hands and he quietly mumbled some words to me.  He didn’t giggle or smile like he always did but he knew I was there with him.  He focused on me for short moments and then looked off into an unknown space.

I realized, at that moment, that my Ernie is tired — I don’t mean from his lack of sleep, either.  He is tired of fighting the terrible monster of Alzheimer’s Disease.   This was the first time I felt his readiness to give up the fight.  My courageous, strong, wise, yet Gentle Giant looked so frail, exhausted and lost.  I laid my head down on his knees and gently squeezed his hands while he drifted off to sleep. I was afraid to let go.   I quietly but deeply began to weep  with my head in his lap.  This cry was the deepest cry I have had in a long time. Although terribly sad,  I felt safe being next to him and I knew that he felt safe with me.  Ernie was always the rock of strength in our relationship.  Now, I am his rock.  These are our precious moments together and I feel blessed that, in this space of time, the chime is weaker but the clock is still ticking.

 It is so challenging  for me to see such a proud, dignified gentleman wind down.  And I know it is the way of things ahead — for as long as it is meant to be. I keep saying my prayer thanking God for yesterday and today and knowing that, together, He and I will deal with tomorrow when it comes.  I am not sure when Ernie’s pendulum will stop and his last chime will ring but I know I’ll be there the best I can for every last stroke.

What Do We Pray For?

18 Jun

My dilemma since Ernie has gone further down the “rabbit hole” of Alzheimer’s Disease is, What words do I use when praying for him? 

My prayer for a long period of time has been, “Let Ernie live with dignity and with quality of life.”  Then, after dignity was taken from him, my prayer became, “Let Ernie live with quality of life and let him feel the love.”  Today, with his inability to take care of himself, recognize his loved ones, his lack of verbal capabilities, frustration, and exhaustion from insomnia,  asking for quality of life becomes ludicrous.

I spoke to a colleague who has a family member suffering with A.D. and she shared that she, too, had the quandary of what to pray for  and now asks God to take her mother.  I fully understand and respect her choice in prayer wording.   I know that when Ernie goes it will be a blessing for him and for me but, at this time, I am not comfortable with asking God to take him — I would rather leave that choice for God to make on His time.  I continue to ask for guidance for whatever is meant to be — but I find it isn’t quite enough.

 I am a Christian who is comfortable with Unity Church’s beliefs and considers myself a spiritual person.  Although I am not Catholic, I reached out to a good friend who is a priest, author, and a lovely human being.  “How can I appropriately word my prayer for my dear husband who is physically but not mentally here with us?” I asked.  Knowing that Andy, who writes, presents inspirational homilies, presides over weddings, christenings, and funerals, would have the appropriate words. He did. 

I would like to share this prayer with others who might find these words comforting:

ERNIE’S PRAYER

Lord, I need words – or do I?

Lord, better, I need gasps,

breaths, moments, holding

my past, my love, better our:

our stories, our memories,

trips, meals, moments, dates,

laughs, resting in each other’s

arms and his scent and sounds.

Who knows what’s next? I don’t.

So I’ll take each moment with

my Ernie. now – the times

he recognizes me and

the times he doesn’t. I do.

That’s all that counts. 
I thank You and I thank him

for the gift  he was / is /

will be to me and Lord,

I thank you for this chance

to serve him, to hold him

and to love him. till the end –

till today, tomorrow and

forever and ever. Amen.

–Fr. Andrew  Costello, good friend and spiritual being

 Need I say more? 

Amen and thank you, Andy.


In the Flesh but not in the Mind

7 May

As much as I try to find the positive in what we are going through with my spouse’s Alzheimer’s Disease, I do hit my lows.

This weekend, I decided to have a date with my husband.  It had been a while since I took him out for dinner and I ached for his companionship outside of the facility.   Looking handsome, clean-shaven, and smelling divine from the aftershave that his care manager dotingly applied,  I was proud to pick him up and have him on my arm.  Although confused, Ernie seemed happy to be joining me outside of his “home.”  We went to one of our favorite restaurants (from the past) and sat in the garden in the evening sun amongst other couples.  Like the others, we conversed and laughed and smiled — but in Ernie’s language that only he understood and I pretended to understand. At that instant, I knew how lucky I was to still have a moment like this with him!  I ordered for us both and we sipped on a glass of wine together.  Now and then, Ernie would play with his napkin and silverware or grab for the salt and pepper shaker not exactly sure of their purpose.  But once our order arrived and I put his place setting where it belonged, he seemed to know exactly what to do.  As the English gentleman that he had always been, he held his knife and fork the proper Europeon way and began to eat.

Toward the end of our “date,” I felt a deep sadness grow over me as I looked across the table.  My handsome husband appeared so normal with his buttoned-down shirt, perfect posture, and rosy cheeks from the sunlight.  He was laughing the same laugh and had the comparable inflections and energy as he tried to communicate with me.  If no one could hear his confused word-salad language, who would know?    For him, things were normal but for me, they were far from normal.   I couldn’t help but think of the times we shared our day-to-day happenings at the dinner table and talked through current events and important issues. My Ernie was once  intelligent, well-read  and interesting.  And although I might not have always agreed with his points in our discussions,  I always respected his wisdom.  Where did this all go?  Ernie looked the same but was far from the same.  I held back my tears and tried to stay in the moment with this fantasy I was now living.

At the end of our evening together, I took my happy guy back to Sunrise Senior Living and thanked him for the lovely evening.  I kissed his cheek, appreciating the clean scent that I knew so well and said Good Night.  Ernie happily wandered off to join his Sunrise family and I cried all the way home.

More Than Words…

19 Mar

Ernie is speaking “word salad” these days.  There is no logic to his words yet he often speaks with energy and expressive body language.  He seems to know exactly what he is saying and I pretend to follow.  I have learned to laugh at his stories and agree with his muddled statements as he points to something I don’t see or recognize.  His verbal attempts give me mixed emotions:  Joy from his fervor and desire to talk; and sadness over the devastating loss of his well-educated Cambridge vocabulary.

My husband is losing ground and I see his disease taking hold of his ability to connect more and more.  Each week, I see him going downhill and I am frightened.  Last weekend, I decided that I wanted to try to bring him home for dinner — perhaps for his last visit.  I am so glad I did.  Although he showed little recognition of home, he recognized Missy, our cat, and sat down on the bed to pet and “converse” with her as he used to do.

Ernie seemed relaxed as we had dinner at our normal places at the table and silently enjoyed being together.  After dinner, we joined Missy on our bed — where Ernie seemed most comfortable.   I yearned to hold him and tell him how much I loved him and did just that.   Ernie responded as if he understood every word and held me tightly.  Our eyes met and I cried and thanked him for being the wonderful husband he had been to me.  He answered with a tear in his eye in a sentence that made no sense but was loaded with love and affection.  He understood.  We deeply connected without the need for words at that moment and seconds passed in silence. Then, surprisingly,  Ernie turned to me and stated in perfect English, “We love each other in a very nice way.”

I am not sure Ernie will remember last night but the connection we shared and his well-spoken, heart-felt words that found their way to me at that moment  will remain in my memory for the rest of my life.  I don’t understand what exactly happens to the brain with Alzheimer’s but I do know that love still remains in tact no matter how much of the cognitive piece is gone.   Love is energy and feeling and means so much more than words.

If For a Moment in Time….

5 Dec

Last night gave me that moment in time that I thought was gone forever. For a short time, the clock stopped and life was as it used to be…

Since Ernie’s admittance to the memory care facility, the nights here at home have felt cold and lonely. For 9 months,  I have climbed into my empty bed feeling an aching desire to have him next to me and, upon awakening, have felt the dull jab in my stomach from the reality that he is gone.

Last night, I chose to take Ernie to a Christmas gathering in our community — if for only an hour.  I knew that there would be familiar faces in festive moods with lots of holiday cheer.  Also,  there would be dancing — something Ernie always loved!  Knowing that his feet still moved with a good beat, I wanted to dance with my husband once more!  I pulled out his dress clothes, polished his good shoes and took them to Sunrise to get him handsomely dressed and ready to party!

At first, Ernie appeared confused as to where he was going but, once dressed in his finery, seemed ready to take on the night with “his lady!”  I purposely had Michael Jackson’s CD, This is It, playing in my car as we drove to our event and could not help but see his foot tapping and his hand slapping  his knee to the rhythmic song of Beat It.  Upon our entrance, familiar faces greeted Ernie and me with open, loving arms. Although Ernie could not remember names, he recognized the face and felt the energy of each person.   His enthusiasm and confidence grew with each welcome and he felt loved.

And then, the music began…

Paul, the neighbor D.J., looked at me with a twinkle in his eye when he saw Ernie take me to the dance floor. He surprised us both by playing our two favorite dance songs.   And dance we did.  Ernie’s rhythm took over as he confidently stepped out and swung me around the floor like he always had done.  Together, we danced, laughed, cried, and held each other as if we were the only ones on the floor.  For those moments, we were the Ernie and Margo of yesteryear.

We enjoyed a half dozen dances and were happy.  As we left the party, I thought, What would happen if I brought Ernie home for just one night with me?  I had been advised by the facility staff that this might not be the right move however, my heart spoke clearly that this is what I wanted to do.  I longed to bring him back where he once had been.  When asked if he would like to come home with me, he glanced over at me with a smile and said, You bet, Kiddo.

Ernie walked into our home happy but somewhat confused and I  wondered if I had made the right choice.   I lead him to the bed room, prepared the bed for any unforeseen accidents that might occur, helped him undress and climb into our bed. He seemed comfortable.  After turning out the lights in the other rooms, I returned to our bedroom with a flash back…there Ernie was on his side of bed, tucked in, with our little cat resting on his feet.  I  climbed in next to him and felt safe once more!   I closed my eyes and blessed the feeling of his presence next to me as it had been for 22 years. The warmth of his body, his arm so familiarly wrapped around my waist, his even breathing and his, Good Night Kiddo-squeeze sent us both off to sleep holding tightly to each other the entire night.

In the morning, reality came back. Ernie seemed happy but somewhat agitated and I helped him to get oriented, dressed him, and  took him “home” to where he now lived at Sunrise.  Sad as I felt, I would not have taken away the night together for anything.  If only for a moment in time, the clock seemed to stop, all worries dissolved, and I knew that this night would remain in my memory for the rest of my  life.  For this, I am truly thankful.

Talking Turkey about a tough topic…

16 Oct

This is a tough topic to discuss and, although my husband can no longer speak for himself on the issue, I know, in my heart and soul, that he wants me to speak for him.

When someone is diagnosed with an incurable disease, how does he share with his loved one the desire to end life early before the disease really sets in?  This can be complex as it deals with one’s personal religion, spiritual opinions, and morals.  If the afflicted partner asks for understanding and support toward this issue, how should their loved one respond?  How difficult is this to face on either of their parts?
My husband tried desperately to discuss his desire to take his life about a year into his Alzheimer’s diagnosis.  He was aware that his memory was getting worse and the day-to-day chores were becoming more of a challenge.  He began to tell me,   I’m scared.  I don’t want to become someone sitting in a stupor, staring out a window.  Alzheimer’s can be a long, slow journey down hill, and I don’t want you to suffer through this.

I was shocked to hear him mention taking his life.   After all, I was still in denial and waiting for a cure to come along to take the Alzheimer’s diagnosis away.  We were experimenting with a memory drug, over-the-counter brain products, vitamins, coconut oil, brain teaser games and exercise, and my hope was still that he would be one of the few to beat the Alzheimer threat.

Ernie had always agreed with Dr. Kevorkian’s view about physician-assisted suicide for terminally ill patients.  He strongly felt that people had the right to make a choice on ending their lives in these situations.  I, on the other hand, felt death needed to be left in God’s hands.  He consistently argued that it was his choice and that he planned, at the right time, to discuss this with our doctor.  He firmly believed that he would get help with his desire.   I would get angry with him for his feelings and tell him that most state laws would not support this kind of help in such matters.  Ernie insisted that with or without help, he would find a way to take his own life before it was too late.

One day, I discovered some scribbled notes that Ernie had penned about what was happening to him and all of the fears connected to losing his mind.  He wrote that he wanted to make a plan to “check out” earlier rather than later — while he could see it through.   Reading his barely legible notes opened my eyes and my mind on the issue and I asked myself, What would my feelings be if I was in his shoes?  How would I feel losing my abilities with the simplest of tasks? Would I want my loved ones to witness my slow yet sharp decline before their eyes?  Would I want my family members to give up their lives to nurse and take care of me?

I found myself re-evaluating Ernie’s “desire” and decided to set his mind at ease by giving him validation. One day, I told him that I fully understood. Together, we cried as he held me tightly and repeatedly thanked me for understanding.  He spoke of his guilt for feeling the way he did and shared his relief for my acceptance regarding his feelings.    Trust me, he said, God and I have talked about this and there will be a way. Somehow, in my heart, I trusted that his plan, if there really was one, would never occur but I felt that giving him the love, support and validation could set him free.

That was four years ago and Ernie now is in a senior facility not knowing what day it is, what time it is, or where he is.  His spirit still is alive in ways that I can see but he is not Ernie.  He is living his feared nightmare and does not know it.  It breaks my heart seeing him disappear before my eyes.  I can’t help but think what my Ernie might say if he could see himself today, Margo, please end this for me.  This is not the way I wanted it to go. 

For the spouse and family, it is a nightmare, as well.  No one wants life to end this way.  It is not what Ernie asked for and his desire to take his life before it’s too late faded as did his mind.  I stood by helplessly as life moved ahead with the disease taking over my husband.  For some victims suffering a debilitating disease, the desire to end life sooner than later is real and not one of which to be ashamed.  We all want to go out with dignity. I know Ernie would want me to speak for him with hope that the conversation about this issue might bring about more understanding.

NOTE:  Playwright, Bruce Graham, was brave enough to deal with this challenging issue in his play,  The Outgoing Tide. It is being presented at the Delaware Theatre Company in Wilmington, DE this month, with the talented cast of  Michael Learned, Peter Strauss, and Ian Lithgow. It is directed by Bud Martin and moves to Off-Broadway next month.

I support The Outgoing Tide‘s message.

To see the promo video on Caregivers, go to:  http://youtu.be/lq6AzsR_tq4

For more information on The Outgoing Tide, go to: www.DelawareTheatre.org