Tag Archives: end of life issues

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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The Clock is Running Down

6 Jul

Oh, how I wish I could wind the clock and help it to keep ticking.  Unfortunately, this clock does not come with a key, weights to pull, pendulum to swing, or a battery to replace to bring it back to life.  This particular clock is running down fast.

I feel Ernie’s time is coming sooner than later.  Yesterday, I felt it more than I ever did.  The change in his health is significant and has come on so rapidly — just as the Care Managers warned.  I didn’t want to believe that this day would come, but it is upon us.  I saw it with my own eyes, felt it in my heart, and heard it from my inner voice.  I saw it in Ernie’s eyes and felt it in his actions, as well.  Now, more than ever, I realize that each ticking moment counts.

My Ernie looked much like a little wounded bird when I arrived.  I saw him standing with a hunched posture, looking extremely thin and  leaning against a door — gazing into the family room of the Memory Care unit.  It was as if he wasn’t sure where he was going, why he was standing there or how he got there.  But, blessed as we are, he knew me when I walked up and put my arm through his arm and lead him to a quiet place for the two of us to sit and be together.   He sat down in a comfortable chair as I sat facing him on the ottoman.   Ernie suddenly surprised me when he pulled my face into his hands and gave me a tender kiss. We held hands and he quietly mumbled some words to me.  He didn’t giggle or smile like he always did but he knew I was there with him.  He focused on me for short moments and then looked off into an unknown space.

I realized, at that moment, that my Ernie is tired — I don’t mean from his lack of sleep, either.  He is tired of fighting the terrible monster of Alzheimer’s Disease.   This was the first time I felt his readiness to give up the fight.  My courageous, strong, wise, yet Gentle Giant looked so frail, exhausted and lost.  I laid my head down on his knees and gently squeezed his hands while he drifted off to sleep. I was afraid to let go.   I quietly but deeply began to weep  with my head in his lap.  This cry was the deepest cry I have had in a long time. Although terribly sad,  I felt safe being next to him and I knew that he felt safe with me.  Ernie was always the rock of strength in our relationship.  Now, I am his rock.  These are our precious moments together and I feel blessed that, in this space of time, the chime is weaker but the clock is still ticking.

 It is so challenging  for me to see such a proud, dignified gentleman wind down.  And I know it is the way of things ahead — for as long as it is meant to be. I keep saying my prayer thanking God for yesterday and today and knowing that, together, He and I will deal with tomorrow when it comes.  I am not sure when Ernie’s pendulum will stop and his last chime will ring but I know I’ll be there the best I can for every last stroke.

Talking Turkey about a tough topic…

16 Oct

This is a tough topic to discuss and, although my husband can no longer speak for himself on the issue, I know, in my heart and soul, that he wants me to speak for him.

When someone is diagnosed with an incurable disease, how does he share with his loved one the desire to end life early before the disease really sets in?  This can be complex as it deals with one’s personal religion, spiritual opinions, and morals.  If the afflicted partner asks for understanding and support toward this issue, how should their loved one respond?  How difficult is this to face on either of their parts?
My husband tried desperately to discuss his desire to take his life about a year into his Alzheimer’s diagnosis.  He was aware that his memory was getting worse and the day-to-day chores were becoming more of a challenge.  He began to tell me,   I’m scared.  I don’t want to become someone sitting in a stupor, staring out a window.  Alzheimer’s can be a long, slow journey down hill, and I don’t want you to suffer through this.

I was shocked to hear him mention taking his life.   After all, I was still in denial and waiting for a cure to come along to take the Alzheimer’s diagnosis away.  We were experimenting with a memory drug, over-the-counter brain products, vitamins, coconut oil, brain teaser games and exercise, and my hope was still that he would be one of the few to beat the Alzheimer threat.

Ernie had always agreed with Dr. Kevorkian’s view about physician-assisted suicide for terminally ill patients.  He strongly felt that people had the right to make a choice on ending their lives in these situations.  I, on the other hand, felt death needed to be left in God’s hands.  He consistently argued that it was his choice and that he planned, at the right time, to discuss this with our doctor.  He firmly believed that he would get help with his desire.   I would get angry with him for his feelings and tell him that most state laws would not support this kind of help in such matters.  Ernie insisted that with or without help, he would find a way to take his own life before it was too late.

One day, I discovered some scribbled notes that Ernie had penned about what was happening to him and all of the fears connected to losing his mind.  He wrote that he wanted to make a plan to “check out” earlier rather than later — while he could see it through.   Reading his barely legible notes opened my eyes and my mind on the issue and I asked myself, What would my feelings be if I was in his shoes?  How would I feel losing my abilities with the simplest of tasks? Would I want my loved ones to witness my slow yet sharp decline before their eyes?  Would I want my family members to give up their lives to nurse and take care of me?

I found myself re-evaluating Ernie’s “desire” and decided to set his mind at ease by giving him validation. One day, I told him that I fully understood. Together, we cried as he held me tightly and repeatedly thanked me for understanding.  He spoke of his guilt for feeling the way he did and shared his relief for my acceptance regarding his feelings.    Trust me, he said, God and I have talked about this and there will be a way. Somehow, in my heart, I trusted that his plan, if there really was one, would never occur but I felt that giving him the love, support and validation could set him free.

That was four years ago and Ernie now is in a senior facility not knowing what day it is, what time it is, or where he is.  His spirit still is alive in ways that I can see but he is not Ernie.  He is living his feared nightmare and does not know it.  It breaks my heart seeing him disappear before my eyes.  I can’t help but think what my Ernie might say if he could see himself today, Margo, please end this for me.  This is not the way I wanted it to go. 

For the spouse and family, it is a nightmare, as well.  No one wants life to end this way.  It is not what Ernie asked for and his desire to take his life before it’s too late faded as did his mind.  I stood by helplessly as life moved ahead with the disease taking over my husband.  For some victims suffering a debilitating disease, the desire to end life sooner than later is real and not one of which to be ashamed.  We all want to go out with dignity. I know Ernie would want me to speak for him with hope that the conversation about this issue might bring about more understanding.

NOTE:  Playwright, Bruce Graham, was brave enough to deal with this challenging issue in his play,  The Outgoing Tide. It is being presented at the Delaware Theatre Company in Wilmington, DE this month, with the talented cast of  Michael Learned, Peter Strauss, and Ian Lithgow. It is directed by Bud Martin and moves to Off-Broadway next month.

I support The Outgoing Tide‘s message.

To see the promo video on Caregivers, go to:  http://youtu.be/lq6AzsR_tq4

For more information on The Outgoing Tide, go to: www.DelawareTheatre.org