Tag Archives: Parkinson’s disease

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

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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.