Tag Archives: partners

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.

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.

Focus on Can Do

28 Mar

Thought for the day –

Never let what you can’t do interfere with what you can do – Hayes

A friend of mine and author of, Shortcuts to Life’s Secrets, sends out a positive thought each day which I religiously read.  Some days, it fits my circumstances and other days, it just makes me smile!  Today’s thought got my juices flowing for my blog…

We all know that Alzheimer’s is a terrible disease.  It robs one’s intelligence, pride, and independence and creates fear and havoc for  the partner and the families involved.  For three years, I lived under a dark cloud while dealing with the ups and downs of Ernie’s memory loss.  After the shock of his diagnosis of Alzheimer’s, our world became a series of negative thoughts and waiting for the next shoe to fall.  I was occupied 24-7  with fixing financial messes, household problems, medical consultations, communication and relationship challenges, and dealing with anger and depression.  All I could see was my husband’s disease and what was lost.  The more I focused on his losses and what he could not do, the more stressful life got!

With the help of a good friend’s kind advice to “stop focusing on the negatives and start finding the positives” despite the disease, I worked to change my perspective.  I asked  myself, What still works?  What can we still do together? How can we create happiness with such a sad situation?   My husband could still take long walks, communicate on lighter issues, smile, laugh, make funny jokes, and dance at weddings.  He could ride with me while doing errands, push the grocery cart, join me for dinner with good friends, and sit and enjoy movies, music, and concerts.  He could still hold my hand, hug me, and snuggle up on the sofa with me.  These were the things he still could do.

Today, as I visit Ernie at his assisted living facility, we continue to do what we still can do.  Although it is more limited, we take walks, smile, laugh and hold hands.  I occasionally bring him home for the weekend to make a special meal for him, watch a light movie, hold his hand at night, and enjoy our coffee together in the morning.  These are the things that we still CAN enjoy together.   And even though I realize that some of these can do’s will fade with the progression of his A.D., it is my goal to keep looking for what still can be done.

Hayes, thank you for your thought today.  Hopefully, it affects many of your readers and my readers the same way it has affected me.