Tag Archives: understanding alzheimer’s

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.

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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.

The other woman?

12 Sep

Despite my husband’s loss of memory, he still looks physically handsome and younger than his 82 years.  He wears his colorful golf shirts and khakis as he walks around his assisted living facility with a perfect posture, managerial strut, and a warm smile .  People have shared with me that he looks more like the director than a resident.  So, it is no surprise that Ernie catches the attention of many of the widowed women in the assisted living areas of the facility.

The staff and I smiled as, during his first few weeks in assisted living,  various women were overheard discussing the new handsome gentleman and questioning whether his wife was still alive.  This became a moot point, however, when I was seen with him on my daily visits.   I didn’t feel jealous or threatened and was proud that he was receiving such attention. I enjoyed entering the facility through its double doors each visit to see who was milling around the bistro and living areas to greet. I felt that Ernie’s new home had become my home-away-from-home and his new friends were my new friends, as well.  He would laugh when I told him what a stir he was causing and say, “Don’t worry, you are my lady.

The time came, however, when Ernie was spending most of the day in the memory care section of the facility vs. the assisted living area and, once again, he became the new handsome gentleman to the resident women in this area.  The difference is that Ernie and these women have dementia and could not be rational about their feelings. Ernie became the new boyfriend or husband in a few cases. I found when I entered the facility for my visits, I was not as welcomed by his admirers!  It became uncomfortable for me after a few interactions from one outspoken resident who shouted at me for taking Ernie away from her and scolded him for leaving her.  This confused my husband terribly and, with his demented mind,  he was not sure whether to go with me or stay with her.  I felt extremely awkward trying to defend my presence to her and getting the unexpected, uncomfortable feeling that Ernie was not as drawn to me.  His response to me that day was not as welcoming as it had been previously.  I felt tense entering the area and wondered if this was a sign of what is to come.

The staff was aware of the situation and took some necessary action as to the activities and the possessive resident’s need to be near Ernie.  That particular relationship was snuffed for the time-being.

Ernie is now matched up with a lovely, quiet and strong-natured widow for his daily meals.  Both sit together every day at their own table for two and have formed a nice friendship.  She definitely thinks that Ernie is her husband and I try to be more tolerant on this.   I see them sitting comfortably together in the living and activity areas.  No doubt, they enjoy each others’ company.   Presently, Ernie still knows me as his lady, but I can’t help but wonder what may be next.   How will it feel when he doesn’t recognize me as his wife?  How will it be for me to see him thinking someone else is his lady?

We know this happens.  The Honorable Sandra Day O’Connor is a famous example of having this exact challenge with her husband’s dementia.   I am trying to be realistic and pass no judgement.  My desire, of course, is for Ernie to be comfortable and happy — and I am thankful that he is.  I’m trying to have a sense of humor on the little comments that this lovely lady makes about Ernie to me — especially when she tells me that she is “keeping him straight!”  I smile or cajole with her and try not to take any of this personally.  In a way, I see her taking care of his needs and being a good companion to him when I am not there.  For the moment, Ernie still looks for me and loves going out with me when I arrive.  He still calls me his lady and I choose to enjoy it while it is still here.

This is just another step in a new direction with a partner who has dementia.  I pray I can continue to keep my focus on what Ernie and I had and still have and not on what might be next. Life brings us challenges and I try to take each day as it comes.