Alzheimer's Disease: Making "End of Life" Decisions
A light snow is falling today and the temperature is colder than it’s been for a week or so. I feel the chill in my bones but I realize it is a chill that is rooted more in my emotions than it is in the weather. The day began quite normally. I had a few errands to take care of but nothing that was really pressing. An extra cup of coffee while I did some reading put me in just the right frame of mind. It did not last long.
A Pivotal Moment
My errand list for the day included a visit to my Mom and Dad but first, I had some business to take care of. Yesterday, my Mom had her regular visit with her physician. Scheduled as a routine visit, I knew it would be anything but. The past few weeks have worn my Mom down. Her husband (my father) has changed and she is having a difficult time adjusting. Alzheimer’s has stolen more than my Dad’s memory. It is now attacking (and stealing) his personality and his ability to communicate. After 63 years of marriage, my Mom is losing her soul mate to a disease that is cruel and unpredictable. I cannot imagine how she must feel. Until, she handed her physician a note she had written.
An Excerpt From My Alzheimer's Blog
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The note was typed and out of character for my Mom who was quite literate and meticulous in her ability to communicate. The note consisted of short broken sentences and after reading it, I am sure she struggled to put the words on paper. In the note, my Mother said she was tired and that she had lived a good life and had the “BEST HUSBAND” and children. She said the time had come for her to make sure that we (her family and physician) understood that she did not want any heroic measures used to keep her alive. This was not news to us. The conversation had taken place many years ago after my Mom suffered a massive stroke. As a family, we all agreed that we wanted no heroic measures should we ever experience an illness from which we could not recover. As a family, we agreed to honor each other’s wishes. But something about the simple, broken sentences was different. They were written by a woman who in a moment of clarity, had come to terms with her future. After all these years of being loved and protected, she understood she was facing a future without the husband she has loved so dearly. As her daughter, I knew this was a pivotal moment for all of us. It was time to make those difficult "end of life" decisions.
The hammer falls
After a few moments of thoughtful consideration, her physician brought two bright yellow forms into the room. He gave me the instructions necessary to complete the forms and to post them in my Mom and Dad’s home. He explained that that if there was ever an emergency, the first responders would look for these bright yellow forms and know not to start CPR. His instructions were simple and logical and we moved on.
Well, the physician did. I'm not sure about me and Mom. It seemed that we were suspended in a dark and lonely space in time. We were standing face to face with the very real "end of life" monster.
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The day got away from me and I didn’t have time to look at the forms until this morning, after the first cup of coffee. I poured the second cup, put on my glasses, and set out to complete the form. I read them through, from start to finish and found no surprises until… I began to enter my Mom’s name in the space provided. It was a moment I will never forget. It was a moment when the reality of life smacks you square in the jaw and you realize that some things are just too big for emotional control. The tears rolled down my face like a mountain stream. It was the moment when a daughter comes to terms with the truth – that life in this dimension is finite and her mother has come face to face with her own mortality. And in that moment, she also realizes that the one with Alzheimer's (her Dad), is oblivious.
This is life and I know it. It's hard but I lean on love and through love, I will be okay. I will be okay because the parents that have loved me, need me. It's my turn and I will rise to the occasion.
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Love Will See Us Through
I must admit that my reaction to this "end of life" decision making has surprised me. I have prepared for this. It has been thirteen years since my Mom’s stroke. We had faced the demon and made the decision to do what we could do keep Mom with us a little longer. And, it worked. Had we made a different decision, a decision not to use science to prolong her life, we would have missed these past thirteen years. But that was then and this is now. And this, is a new reality.
Mom and Dad have had a good life. They worked hard together, as a team, to parent us and provide for us. They loved each other and they showered their children with love. Our family has been blessed beyond measure with all the best that life has to offer. We have enjoyed the blessings of good health, decent jobs, a community of friends who shared our love of family, God, and country and as a family, we have always tried to give back more than we have received. We are close and every decision we have ever had to make was made in love with elements of logic and best intentions. Now, we must do it again.
It Is Done - Finished!
After a few minutes of tears, I gathered my resolve to complete the task at hand and it is done. The forms that tell the first responders not to resuscitate my Mom and Dad are complete and will soon be posted on the refrigerator in my parent’s kitchen. There will be no more days when we can ignore the inevitable. The "end of life" decision is made and the wheels have been set in motion. When our family faces the next crisis, no decisions will be made to prolong the life of my parents. EMS will see the bright yellow form with “Do Not Resuscitate” printed in a big, bold, red font hanging from the front of the refrigerator. They will do what is possible to provide comfort but nothing more.
Why Tell The Story?
The story must be told because there are laws in place that can prevent families from deciding for themselves what is the best medical action to take in an emergency. Without a living will or medical directive, the emergency responders are required to initiate CPR to sustain life. To resuscitate my Dad whose Alzheimer’s is progressing rapidly, would only be cruel. To resuscitate my Mom and force her to watch my Dad’s demise would be equally cruel.
Have you had the "end of life" conversation with your own family? Do you know what your loved one’s wishes are? If the answer is no, then please, take the following steps so that no family member is forced to make these very difficult decisions in the midst of a crisis.
- Have the discussion with your loved ones. Talk until everyone is clear about what should be done.
- Prepare a Living Will and an Advanced Directive and provide copies to your family and physician.
- If you do not want CPR to be used to prolong your life, obtain the legal “Durable Do Not Resuscitate” (DDNR) form from your physician or state health department.
- Complete the form and post it your home where it is clearly visible to first responders.
As difficult as this is, it is the most kind thing a family can do for one another. If you have not taken care of these important decisions, do it and do it soon.
© 2013 Linda Crist, All rights reserved.