Tag Archives: emotional challenges

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.


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.

The Value of Feeling Valued

9 Apr

For our companions with memory loss, the ability to accomplish simple, every-day tasks becomes increasingly more challenging.   Asking our partners to do the easiest of chores often gets misinterpreted by them and done in odd ways that we can not comprehend.

I found that easy directions like, “Honey will you take your dirty dish to the sink?” could lead to my husband heading with his dish to the bathroom, garage, or putting it in a kitchen cabinet or the freezer!  He always felt he was accomplishing the task and saw no wrong while  I, too many times, got angry and scolded him for such silly behavior.  My reprimand, in turn, caused his lashing out at me and throwing child-like tantrums.   I realized that the frustrations existed for both of us and, too often, led to stressful clashes.  During these tense moments, no words could seem to bring resolution.   After many skirmishes over such issues, I have learned to remain unflappable — reminding myself that it is not he that is at fault, it is the disease.  By practicing patience, silence, and positive body language, I find less stress for both of us.  (I now simply remove the soiled plate from the freezer, say nothing, and go on with life as if it were normal!)

Still, my husband continues to ask, Can I help?  I have learned to say, Yes, and to give him simple chores that I feel he can handle. The tasks I assign to him include: drying dishes; folding the wash; putting linens in the closet;  sorting socks or rearranging a drawer.  Sometimes, I create a simple, unnecessary task that still helps give him a sense of responsibility. Whatever the outcome,  I make it a point to compliment him on a job well-done without scrutiny or judgement.  Not only does this new practice allow more individual time for me to accomplish my tasks at hand, it supports Ernie’s desire to help and gives him a feeling of value.   I have found that with this change in my behavior, we can work well together with less frustration.

We must not overlook the value of our loved one’s need to feel indispensable, accomplished and appreciated.   He/she already is aware of  the personal loss in abilities that were once possible.  What a difference it can make for our partners to still feel a sense of need and value in our lives!

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.