Tag Archives: transitions

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.

Advertisements

Learning to Let Go

6 Dec

We all know that learning to let go is a part of life.   There are so many occasions where we are faced with the reality that we must let go in order to move on.   When we go from one phase of life into another, it involves letting go.  We know the feeling of leaving a home, a job, a marriage, and even an old habit behind.  And those of us who have experienced losing a parent, loved one or dear friend, know the pain of letting go of their presence in our every day lives.

Since Ernie’s diagnosis of Alzheimer’s Disease, both of us were forced to let go of  life as it had been in our normal married relationship.  I had to let go of my business opportunities and my every day activities in order to take care of his health and to stay on top of the new responsibilities of running a household and managing the finances.  Ernie had to learn to let go of the control of finances, driving a car, business dealings, and his love of playing golf, to just name a few.   As most of these let go’s were challenging for us both, we had no choice and found little time to mourn over these losses in order to keep proceeding forward.

When the disease advanced, Ernie had to move into a senior facility.   Both of us, again, faced letting go.  I was faced with letting go of married life as a full-time caregiver to a life of single living.  And despite it being somewhat of a relief from worry and exhaustion from being his caregiver, it was an emotional and extremely lonely time for me.  Ernie, on the other hand, had to let go of  the familiar comforts of his home and make the senior facility his new residence.  He had to learn to say good-bye to me each day/night I had to leave him.  Looking back, despite the emotional ups and downs, we handled these as well as to be expected.

Life now– as it has been for a year and a half — has become the norm with my visits to and from the senior facility which has become my home away from home.  The staff and other residents have become both his family and my family.  I know, deep down, that this is about to change.  Ernie is declining fast and I feel his time in this life is limited.

Over the last six months, he has lost 50+ lbs and is growing weaker by the day.  He is having frequent falls, now has a wheel chair, and seems distant and lost in how he spends his days.  Hospice visits him daily.  When not napping, he seems preoccupied with imaginary things in front of him at which he bats away or picks.  His conversation is  hushed with words that only he understands.  Occasionally, however,  a smile, a kiss or a touch of my hand surprises me as he comes into our “world” for a split second.  For that second, I give thanks.

Now, I am facing a bigger letting go…

I am not God, and don’t know the “when,” but I do feel the end of his life is approaching with each day.  I value our time together and, at the same time, am trying to prepare myself for the reality of his passing which seems imminent.  I know that the absence of Ernie from my life will be devastating and with it, will come the loss of Sunrise, “my home-away-from-home,”  its  residents with whom I have developed relationships, and the staff who I have fully trusted, and loved.

As we see it, we feel the best for Ernie now is to move on.  My prayers are for him to feel safe, unafraid, and loved whenever the time comes.  Still, I take in each day, and appreciate every moment I have with his physical presence and the visits with my family at Sunrise.   Am I ready to let go?  I’m not sure but I am certainly trying to move ahead the best way I can.  After all, letting go allows us all to move forward.

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.

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.