Tag Archives: coping

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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“I’m happy, happy…”

25 Apr
Ernie and I were asked to be interviewed for both a radio and 
television program for NPR - WHYY in Philadelphia last week.  
I was willing to do the interview but wondered how Ernie would 
communicate under his Alzheimer's condition.  Would the mike 
or the camera scare him? What would he say?  How much would he 
understand about what was going on? Would he say something that
would be inappropriate?
I was pleasantly surprised to find how comfortable and 
confident he was! 
I am not sure he really understood what was going on, 
but he openly shared his 
comments and laughed, teared up, and several times 
reached across the camera to tap my nose in an affectionate way.  
This very dignified gentleman who had difficulties showing his 
emotions for so many years now proudly shared his feelings -- 
for all the world to see!
Ernie lives in the moment, appreciates the small things, 
doesn't sweat the "small stuff" and 
continues to say,  "I'm happy, happy."  
Isn't that something we all can learn from?

To listen to Maiken Scott's WHYY interview on aging, go to:
http://www.newsworks.org/index.php/homepage-feature/item/37466-
living-with-dementias-costs-financial-and-otherwise&Itemid=1 

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.

Knock Knock — Who’s there?

26 Mar

Taken from my January, 2011 journal:

Each day not only is a new day for the person with Alzheimer’s, it is also a new day for the partner.  As I go to bed at night, I wonder what the next day will bring and who will be awakening next to me in my bed.  Some mornings, I awake to the man I know and give a sigh or relief  and a prayer of thanks for his recognized and familiar traits.  Other mornings, I observe a dazed man who is next to me with his eyes staring at the ceiling as if to ask, Where am I? Who am I? What is going on in my world?  When I observe these moments of confusion, I reach out and gently touch him or put my arms around him.  He immediately recognizes my touch and responds with a gentle, I love you.  These moments are sweet and yet so difficult.  I know he’s changed and, on some level, he knows he’s changed.  Still, the human touch brings the emotions back for both of us and, for those few moments, we are communicating and we both feel safe.

On the days that the moods change and frustrations are high, a cruel monster steps out of the man I married. It can take a simple comment or expression from me that makes him yell, throw or kick objects at me.  He tells me that it is all my fault and that I have changed.   This is not the gentle man I married.  I don’t know him and don’t know how to communicate with him.  I try all responses and experience only more frustration.  Finally, I  ignore the outbursts and leave the room, hoping that this unfamiliar person doesn’t follow me.   It is during these moments that I want the stranger out of my home.

My lesson has been to focus on the good moments since I know they are fading fast for us as a couple.  I want to remember my loving husband and the good times we have had — not these challenging episodes with someone I only physically recognize but don’t know.  I must remain strong and, when given the opportunity in the early morning, reach out, hold him and hear him say, I love you.  I know, for that precious moment, we both feel safe and loved.  That’s what I want to remember.

Married to Alzheimer’s, Living and Coping with a Partner with Memory Loss

25 Mar

Welcome to my blog: Married to Alzheimer’s, Living and Coping with a Partner with Memory Loss

My name is Margo and I am married to a wonderful man who was stricken with Alzheimer’s Disease (A.D.) about five years ago.  I have an MSW degree and had a healthy second career in the teaching and corporate training/coaching fields.  My husband, Ernie, had a reasonable retirement on which we vacationed and lived a comfortable life.   All seemed to be going well until an uninvited stranger silently crept into our home, our marriage, and our lives and created emotional challenges like I had never faced in my 55 years — The stranger’s name was Alzheimer’s.

This blog is based on a collection of journals which I have kept during this roller coaster ride of day-to-day living.  These personal  journals became my only friends that allowed me to “say” anything I felt I needed to say without any judgement during multitudes of turmoil.   

I faced so much of this alone and now want to share my experiences, learnings, and advice to help others who may be going through life with a partner with memory loss.  I will continue to journal my experiences on-line as I go through the stages of my partner’s A.D., hoping that I can shed some light to educate others in their struggles.   Each month, I will include tips, up-to-date information, and articles on Alzheimer’s, as well.  If you feel the need to share, I would love for you to be open to “talk” with me about your experiences — after all, we can learn from each other.