Tag Archives: memory loss

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.

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

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.

Alzheimer’s/Dementia in the Media

21 May

Just four years ago, it was challenging to find reports, news articles, or any information that would be helpful while we were navigating the frightening road of my husband’s Alzheimer’s diagnosis.  Most of our guidance came from signing him up for research at the University of Pennsylvania’s Memory Center as a volunteer study participant.  For Ernie’s willingness to allow studies of his brain, spinal fluid, and blood samples, we gained what information we could regarding  this unfortunate disease.  We also had a local friend whose husband was diagnosed about the same time as Ernie and, together, we joined the U. of Penn. studies and clung to each other for any news we could get about research, services, and local help.

Today, Alzheimer’s disease is in the news daily:  Radio, television, magazines and newspapers publicize multiple articles on the disease;  Pharmaceutical companies tout their products  for memory-loss in commercials several times a day;  Conversation is ongoing as talk show hosts and comedians tell stories about “brain farts;” And middle-aged people, worldwide, openly are conversing with one another about their fears of occasional memory lapses.

Alzheimer’s is now a household word and it’s no wonder!  According to the Alzheimer’s Association, every 68 seconds a person is diagnosed with a form of dementia.  With Baby Boomers approaching old age, the number of possible diagnoses is said to triple.   Public awareness is heightened for all ages.  (As I presented the topic to college students this spring, I found  student bodies talking about it with their own stories about grand parents, aunts, uncles or neighbors who experienced some version of dementia.)

No doubt, the more media this disease gets — the better!   The recent Alzheimer March on Washington raised more awareness and support for funding from  President Obama, and hopefully, our Congress.  We can’t ignore the disease and, fortunately, are taking steps to openly talk about it.  All of this has occurred in less than four years!

It is my prayer that, along with the media attention,  public awareness and additional funding, we can find a cure.  It may be too late for my husband, Ernie, to benefit but, as he shared with me and his U. of Pennsylvania neurologist in 2008,  I may not be cured of this horrible disease in my lifetime, but if I can volunteer to have my brain and body studied to help others in the future, than I have done all I can do.  We need to get the word out!

Let’s keep talking!

The Magic of Music

11 Apr

I have noticed the difference that playing music has on my husband, Ernie, with his Alzheimer’s.  I play certain tunes that have had meaning for him and he comes alive!   Whether Gary Morris, Tina Turner, The Beatles, The Grateful Dead, Michael Jackson or Beethoven — he loves a large variety!  It fully touches his emotions.  He laughs, cries, sings the words, taps his feet, and dances when standing!  He completely reverts back to himself!  His rhythm is right on beat.

This YouTube video speaks well for music and Dementia and I would like to share it with my readers:

 

Stand By Me

1 Apr

I know that most of my friends have tried to stand by me through the challenging experience with my husband’s Alzheimer’s and I appreciate it.  However, no friend can really understand unless he/she walks the same path.  The greatest gift of friendship for me, at a time I really needed it, came from my attending an A.D. support group in 2010…

My life was off-balance as I felt so alone in my relationship with Ernie and his Alzheimer’s.  Reluctantly, I signed us up for a support group that included both the care giver and the family member with A.D.  It was there that I met Linda.  Although we had different backgrounds, we were both the same age, shared similar careers, and found ourselves at the same stages of acceptance of our husbands’ Alzheimer’s disease.  Little did I know that she would become one of my very closest of friends and confidants!

Her husband, although younger than mine, had been successful and extremely respected in his career, as was Ernie.  Both of the men were at similar stages of the disease and became buddies from the start.  Linda and I arranged the first social get together, as a foursome, for dinner.   Through the next year, we planned meals, movies, concerts, local theatre and events, and weekend trips and vacations together — all four of us.   Ernie and Alan had their relationship, while Linda and I had our friendship with full understanding of each others’  challenges.  We talked daily by phone, supporting each other through all the ups and downs of our lives.  Together, we made it our goal to learn more about Alzheimer’s. We researched, attended programs, visited senior  and assisted living centers, and looked for the best care solutions for our husbands and ourselves going forward. We wanted to give Ernie and Alan the most happiness we could and, at the same time, make life more bearable for ourselves.

Through Linda’s friendship, I have found myself feeling more balanced in my stance —  I don’t know what I would have done without her.

My advice to other care partners:  Attend support groups.  Find support from someone who walks the same path.    Having a friendship through true understanding, will allow each of you to stand together and feel more grounded.