Tag Archives: married to alzheimer’s

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.

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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.

Your voice is important!

19 Apr
As a former state legislator, I know the power your voice can have with important issues…  Please take the moment and share your concern via email or phone call to your Congress Representatives and Senators.Best, 

Margo

Advocacy Federal Update Header JPEG

$20 TrillionThis staggering number is the cost of dealing with Alzheimer’s disease during the next 40 years. By 2050, as many as 16 million Americans will have the disease, creating an enormous strain on families, the health care system and the federal budget.While the costs to our nation are high and continue to grow, this issue is about more than just dollars and cents. There are still widespread misconceptions about the disease and health care providers are unprepared to deal with individuals living with Alzheimer’s and their families.

To address these challenges, the federal government must take bold action to confront this epidemic. We call on Congress to increase the commitment to Alzheimer’s research, expand education efforts and support services, and improve access to diagnosis and care planning.

Tell Congress to support a smart and strategic National Alzheimer’s Plan backed by the resources necessary to make progress in the fight against Alzheimer’s.

Putting Alzheimer’s on the Map

Next week more than 700 advocates from across the country will gather in Washington, D.C., to meet with members of Congress during the 2012 Alzheimer’s Association Advocacy Forum. Speaking on behalf of the hundreds of thousands of people affected by Alzheimer’s disease in their local communities and congressional districts, these advocates will remind members of Congress and their staff of the pressing needs of the Alzheimer’s community.

They will ask members of Congress to support the development of  the National Alzheimer’s Plan through an increased commitment to Alzheimer’s research and expanded education and caregiver support services. They will let the administration know that the proposed $100 million for research funding in 2013 is sorely needed to accelerate the development of breakthrough treatments that may prevent, halt or reverse the course of Alzheimer’s.

The efforts of these advocates won’t end in D.C. Many have pledged to followup with their elected officials in the weeks and months ahead by attending town halls, public speaking events and in-person meetings. These visits are vital to our advocacy efforts. A handshake, a shared story and an impassioned request can make all the difference.

Best of all, you can join these advocates today!  Contact your member of Congress now. And reach out to your local Alzheimer’s Association staff for more information on how you can get involved in

The Value of Feeling Valued

9 Apr

For our companions with memory loss, the ability to accomplish simple, every-day tasks becomes increasingly more challenging.   Asking our partners to do the easiest of chores often gets misinterpreted by them and done in odd ways that we can not comprehend.

I found that easy directions like, “Honey will you take your dirty dish to the sink?” could lead to my husband heading with his dish to the bathroom, garage, or putting it in a kitchen cabinet or the freezer!  He always felt he was accomplishing the task and saw no wrong while  I, too many times, got angry and scolded him for such silly behavior.  My reprimand, in turn, caused his lashing out at me and throwing child-like tantrums.   I realized that the frustrations existed for both of us and, too often, led to stressful clashes.  During these tense moments, no words could seem to bring resolution.   After many skirmishes over such issues, I have learned to remain unflappable — reminding myself that it is not he that is at fault, it is the disease.  By practicing patience, silence, and positive body language, I find less stress for both of us.  (I now simply remove the soiled plate from the freezer, say nothing, and go on with life as if it were normal!)

Still, my husband continues to ask, Can I help?  I have learned to say, Yes, and to give him simple chores that I feel he can handle. The tasks I assign to him include: drying dishes; folding the wash; putting linens in the closet;  sorting socks or rearranging a drawer.  Sometimes, I create a simple, unnecessary task that still helps give him a sense of responsibility. Whatever the outcome,  I make it a point to compliment him on a job well-done without scrutiny or judgement.  Not only does this new practice allow more individual time for me to accomplish my tasks at hand, it supports Ernie’s desire to help and gives him a feeling of value.   I have found that with this change in my behavior, we can work well together with less frustration.

We must not overlook the value of our loved one’s need to feel indispensable, accomplished and appreciated.   He/she already is aware of  the personal loss in abilities that were once possible.  What a difference it can make for our partners to still feel a sense of need and value in our lives!