Tag Archives: care partners

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.

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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.

“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 

Your voice is important!

19 Apr
As a former state legislator, I know the power your voice can have with important issues…  Please take the moment and share your concern via email or phone call to your Congress Representatives and Senators.Best, 

Margo

Advocacy Federal Update Header JPEG

$20 TrillionThis staggering number is the cost of dealing with Alzheimer’s disease during the next 40 years. By 2050, as many as 16 million Americans will have the disease, creating an enormous strain on families, the health care system and the federal budget.While the costs to our nation are high and continue to grow, this issue is about more than just dollars and cents. There are still widespread misconceptions about the disease and health care providers are unprepared to deal with individuals living with Alzheimer’s and their families.

To address these challenges, the federal government must take bold action to confront this epidemic. We call on Congress to increase the commitment to Alzheimer’s research, expand education efforts and support services, and improve access to diagnosis and care planning.

Tell Congress to support a smart and strategic National Alzheimer’s Plan backed by the resources necessary to make progress in the fight against Alzheimer’s.

Putting Alzheimer’s on the Map

Next week more than 700 advocates from across the country will gather in Washington, D.C., to meet with members of Congress during the 2012 Alzheimer’s Association Advocacy Forum. Speaking on behalf of the hundreds of thousands of people affected by Alzheimer’s disease in their local communities and congressional districts, these advocates will remind members of Congress and their staff of the pressing needs of the Alzheimer’s community.

They will ask members of Congress to support the development of  the National Alzheimer’s Plan through an increased commitment to Alzheimer’s research and expanded education and caregiver support services. They will let the administration know that the proposed $100 million for research funding in 2013 is sorely needed to accelerate the development of breakthrough treatments that may prevent, halt or reverse the course of Alzheimer’s.

The efforts of these advocates won’t end in D.C. Many have pledged to followup with their elected officials in the weeks and months ahead by attending town halls, public speaking events and in-person meetings. These visits are vital to our advocacy efforts. A handshake, a shared story and an impassioned request can make all the difference.

Best of all, you can join these advocates today!  Contact your member of Congress now. And reach out to your local Alzheimer’s Association staff for more information on how you can get involved in

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.