Tag Archives: loneliness

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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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.

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.