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.

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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.

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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

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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.

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From “Giver” to “Partner”

8 Jul

I had a brief chat with a neighbor today about taking care of myself as a “caregiver.” She was concerned about my taking the time to take care of myself in this role.  As much as I appreciated her concern,  I corrected her and shared that I now refer to myself as a care-partner vs. a caregiver.

What does this mean?  For three years, I found myself struggling to take care of my husband, the household, financial, and our family needs.  I look back and realized that I actually did a pretty good job of it!  But, when I looked in the mirror at myself, I found a very tired, overwhelmed, consistently anxious person staring back.  I chose, however, not to take too long of a look at that reflection, and kept on “keeping on” because I felt I had to do so.

Then, early in 2012, a friend shared a statistic that woke me up:

Sixty-five percent (65%) of caregivers die before the person they care for does!  

As a woman who always took pride in multi-tasking and handling it “all,” I found this hard to accept.  Could I be included in this statistic?  I was still 20 years younger than my husband and had gone through some tough times before — this was, indeed, the toughest though,  But I am strong, in good health, and young!  I responded.  I can handle it!

That’s what you think, the friend continued to tell me,  I am not trying to hurt your feelings but I have been seeing a different “you” for a while now and you are extremely high-strung and walking on egg shells 24/7, she honestly said.

I certainly had not paid much attention to myself and thought I was handling everything as well as to be expected.  I took little notice to my feeling short-of breath, having less healthy eating habits, and lacking good night sleeps.  Life was always in a rush and taking care of matters that dealt with my husband and the many A.D. challenges was at the forefront.  I found I turned down things that I enjoyed, made lists and accomplished the many daily tasks only connected to his needs, the financial needs, and my family’s needs.
Exhausted, I found the most enjoyable part of my day sitting zombie-like in front of the television set when Ernie had gone to bed.

I realized that I had changed and, in the midst of this, lost the confidence, the creativity and positive energy for which I was known to have!  With this, my relationships were more strained — with my husband, my daughter and her husband, my students in class, and my friends!  My language became more negative and my spirituality seemed to wane.  This, indeed, wasn’t me!  And how would I get myself–as I used to be–back?

The answer was by changing my role as caregiver to care-partner!  I reached out and found help from the local Alzheimer’s Association and other senior services, found a local senior center for my husband, hired a wonderful man who was eager to make a little bit of money to take Ernie to and from the senior center, used Hospice Transitions’ team to make occasional visits and called on the friends who offered to help. I had so many partners helping me and helping my husband instead of trying to do it all myself.

I began to put my needs into the equation of the life I was having to live with a less-abled husband.  I took a little vacation with a good friend, signed up for a trainer at the gym, took daily walks, took time to meditate and do yoga, and met with my friends for an occasional “night out.”

Now, Ernie is in a senior facility and I know he is in good hands while I have more time to live my own life, as well.  All of this did not happen over night, it took time, faith, creativity, and thinking outside the negative “box” to move ahead.   Life around me has changed. My energy is back, I feel physically healthy,  my view on life is more positive and my relationship with family and friends –even Ernie — is less strained and more comfortable and accepting.

I can confidently say, Margo is back!  I still am molding the person I want and need to be at this point in my life and I’m actually having fun reinventing as I go.  I have a bucket list into which I have already started digging!  And although my sadness returns every now and then with the continued challenges of my husband’s disability, it is easier to get myself back.  I am now partnering with others in order to continue being a loving care-partner to my husband.

I am thankful for the good friend who was honest enough to point out what was happening to me and scare me enough to wake up to do something about it!

To those who identify with the caregiver role, do what you can to change the role of caregiver to care-partner.

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In Limbo, naturally…

6 Jul

An old song played today on the radio that I recognized but, as I listened to the words, I felt extremely sad.   The second verse of Gilbert O’Sullivan’s song, Alone Again Naturally...for the first time,  had so much more meaning to me at this point in my life:

To think that only yesterday

I was cheerful, bright and gay

Looking forward to well wouldn’t do

The role I was about to play

But as if to knock me down

Reality came around

And without so much, as a mere touch

Cut me into little pieces

Leaving me in doubt

Talk about God and His mercy

Or if He really does exist

Why did He desert me?

In my hour of need

I truly am indeed,

Alone again, naturally  —

For those who are married to Alzheimer’s, this song has meaning…

Reality came around and cut me into little pieces.   – That reality is Alzheimer’s.

 To think that only yesterday I was cheerful bright and gay…
Looking forward to well, wouldn’t do the role I was about to play. – The role in my relationship with my partner has completely changed — very little cheerful, bright and gay to look forward to….

Leaving me in doubt. – What’s next?  Where is this going?  For how long?

Talk about God and His Mercy. – Is there mercy in this?  Ernie has been such a good man — does he deserve this?  Do I?

Or if He does exist. –I do believe that God exists and my faith continues to guide me.  The old saying goes that God doesn’t give us anything we can’t handle —  this is a tough one at times!

Why did he desert me in my hour of need? –I don’t believe that God has deserted me but, I must admit that I feel my husband has deserted me due to A.D. and in my hour of need — my prime years of adulthood! 

Alone again, naturally. – When it comes to having a marriage and a relationship, I am alone.  

When I got divorced from my first husband many years ago, I was alone in the male-female relationship but able to step ahead into a new phase of my life as a single woman.  Spouses also go through the trauma of losing their partner in death, and as lonesome as it may be, still have a chance to move ahead in life, as well.  

When our partners have A.D., we are married but single.   Although Ernie  physically lives on, we are not together.  I visit him at the facility often, take him out for lunch or dinner and for walks, and then return him back to his “home” full of his new friends and a loving nursing staff.  I, in turn, come back to an empty house — what used to be our home.

We are in limbo.  How awkward it is to be married but single!    There is no word to really describe this relationship.  I refer to it as “a gray area” with no real definition.  Limbo best describes it.  And we don’t know how long “being in limbo” will remain.  There is no way to diagnose the length of Alzheimer’s Disease and forecast  the future for “us.”

And  so, I am married but single.  I miss all the good things we used to have: romance; traveling with my man;  dancing;, snuggling in front of a good movie; dinners together; drinking coffee every morning; discussions, arguments, and so much more!  Even if he was still living here at home, the disease has taken all that away.

How can we deal with this?

I am determined to not play a victim role, I am a survivor!  Today, I look for moments of connection from him during our togetherness on my visits:  his recognition of me;  a squeeze of my hand, a tear in his eye telling me that he loves me; a laugh or a smile and still saying my name. Those moments still exist  and for that, I am so thankful.  That constitutes our relationship and our marriage today.  I don’t know when/if these moments will disappear as this greedy “A.D.Monster” continues to take away his brain.  But I am thankful for what we have for this moment.

So, in reality, I am alone again, naturally– doing what I can to make the best of something that no doctor, researcher or friend can really define or understand.  I have my partner physically here to hug and touch and show my love to and I continue to look for the connections that we still have on this plane.  That is all we can do.

I hope this helps others who are, because of Alzheimer’s,  alone or, better put, in limbo, naturally.

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