Tag Archives: dementia

The Long Journey and The Destination

31 Jan

I just talked with the staff at the facility and we feel Ernie’s long journey is slowly coming to an end in this life.  He seems to be sleeping most of the time this week and not as interested in food or anything around him.  Last week was a challenging one for me and the staff as we saw him going through a new agitated phase with being restless, anxious, biting us, and simply not at ease.  It was then that I wondered if this wasn’t his own way of trying to “separate” himself from us. 

No, none of us are God and none us  knows when his time is over in this life — but our prayers have been for Ernie’s peace, dignity and for his greatest good all along.  With God’s help, I feel the time is near.  

Interestingly, last night I had a dream about my husband and he was the man we used to know…fully alive and happy and I felt safe being with him as we laughed together on a ride in one of his favorite cars. I awoke smiling as I realized that it had been a long time since I dreamed of Ernie as he WAS.    

Then, I opened a book in my bed stand and found some personal items that Ernie cherished about which I had forgotten:

  1.    A couple of personal notes he had written to me (and to himself) about how much he loved me.
  2.    A Valentine’s card to him from me with a lovely note written, from my heart, about my being by his side for a lifetime.
  3.    A beautiful letter from his oldest son, Dave, who wrote before he passed away, thanking Ernie for being such a good dad and for always being there for him.

After my chat with the caregiver today, I would not be surprised that those precious, personal findings were not an accident.

There is so little we know about this life and beyond but my belief is that we have the power to communicate at all levels in many ways.  I feel blessed that I got these messages.

A good friend, who has walked this road with her husband’s dementia, called me after reading my email/blog and set my mind at ease with her wisdom:  His agitation is his telling you that he is ready to move on.

It’s been a long journey.  And yes, I feel a bit frightened about his next step but I also feel more prepared.   Most importantly, though, I feel at peace that Ernie, himself, is now ready to move on.  My prayer is that he transitions bravely, peacefully, painlessly and feels the love surrounding him.

The Angels Among Us

23 Dec

I went to a Christmas party at Sunrise this week and saw a transformation take place.  My spirits were low when I arrived seeing Ernie sitting with his eyes closed in a chair in a circle around the Memory Care family room.  I couldn’t help but remember how active Ernie was the previous year for the Christmas celebration.  At that time, he danced with me and with the staff — with his great rhythm and energy.  Everyone wanted to be his partner!  But this year, there he sat, eyes closed, in his own little world.

Then, Jo Ann,  a vivacious entertainer, who volunteers her time to senior centers, arrived and began her magic.  As Jo Ann began pulling sparkling objects and bells from a basket,  greeting each and every resident with a hug, and starting the music, I watched as Ernie and all those around him came alive! Suddenly, my mood began to change, as well.  I sat and observed Jo Anne and the entire Sunrise staff  as they helped all of these dementia-stricken residents and their families smile and feel the love!  The true Christmas spirit was alive!

Ernie opened his eyes, sat up and  smiled a big grin — with an occasional giggle.  He reached out and touched my chin and nose a couple of times while the music played and others sang.  He showed an energy I had not seen in quite a while.  Jo Anne and the staff  created a festive energy in the family room which radiated around the entire center — even to those who quietly were sitting in their own “worlds.”

I stayed by Ernie’s side with my heart singing for both him and the others around us. The joy was contagious and I privately thanked  God for this transformation and for the staff who give their lives every day to those in need.  These special people truly are the angels among us and for them, I am so thankful!

At the same time, my heart sank with the realization that this moment for my husband was a “flash in the pan.”  Seeing him come alive again tended to somewhat hold me back from moving forward.  It gave me a false hope.  I have been working on “letting go” with Ernie’s serious decline but find my emotions and hopes resurfacing when I see what looks like life coming back!

This is in my life for some reason and one lesson I feel I am learning is what Buddha said:
Don’t dwell in the Past;
Don’t dream of the Future;
Concentrate the mind on the Present Moment.

These flashes are the real teaching moments.

I appreciate these precious moments and am especially thankful for these special angels among us who are here to give the love and support to our loved ones and who make a difference in our lives, as well.  They are our true teachers.

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.

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

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.