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Alzheimer's Disease: Making "End of Life" Decisions

Updated on November 20, 2013
lrc7815 profile image

Linda lives in the foothills of the Blue Ridge Mountains in central Virginia. She lost her father to Alzheimer's disease in 2015.

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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.

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.

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.

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.

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  • Georgie Lowery profile image

    Georgianna Lowery 4 years ago from Lubbock, TX

    Oh girl, I am so sorry. Here I am throwing a fit because my life is all wonky right now and you, my friend, are struggling with this. We (my two brothers and I) have had to struggle with our daddy's DNR for fifteen years. It was very hard in the beginning, but the three of us eventually made living wills for ourselves. My daddy has had multiple strokes and anything can happen at any time. Watching the man I was sure was stronger than Superman struggle with a walker and memory loss made me understand. The bottom line is that is the absolute best you can do for the people you love the most.

    FWIW, I'm always around somewhere if you want to talk. :)

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Georgie, we all have our stuff, don't we? No one is immune, at least not if they have a heart and are breathing. Sometimes life is hard but we do what is necessary and best and hope that we don't have to live with regret. The decisions that you and I have made are the right ones. I don't question the decision and in truth, I'm glad that I still cry. I would really worry if I didn't feel these days in my core. You know exactly where I am coming from. That part of me that understands that life is a teacher and that we are meant to pass along our lessons is what drives me to share these less than perfect days. I know there are others out there who haven't taken care of the paperwork and the laws are not their friend. There are things far worse than death and my family is hoping to avoid them.

    Girlfriend, I don't need sympathy. Throw your wonky fit. You're entitled. God help us both if we lose our ability to rant and laugh. Thanks for your concern and the offer and FWIW - it's worth more than words can say.

  • Ericdierker profile image

    Eric Dierker 4 years ago from Spring Valley, CA. U.S.A.

    I am about to get cursed to death, and I do not care. Love in this time of "trouble" will show a path to more love.

    Wow the joy of Alzheimer's! A new place a wicked sharp memory of 50 years ago, a place we cannot go.

    But alas I can bring my IPOD and play my mother those wonderful sounds and bring pictures of the big band era. And for the first time in our lives she passes no judgment upon me. We are simply in the moment of her and my dad dancing at the RCA building or helping in some way with WWII.

    The huge Grace that is given my aged mother to remember me as a babe. Her pre 1940 nursing school graduation, Her love of a boy named Eric and so I was.

    If we demand that they live in our reality, which generally sucks we deprive them of the liberty to live in a glorified time. I go to her, leave my cloak at the door. Enter a world where if I bring it, love presides.

    I have loved many women, but I have never been so in love and awed and awakened as when I held Mutti's hand in an embrace of a lifetime and a lifeline.

    I reckon I am a little weird. But I tell you truth. That world need not be horrific, just surrender and love.

  • mjboomer profile image

    Mike Elzner 4 years ago from Oregon

    Linda, I truely appriciate your care and perspective. DNR and living wills are difficult, emotional and yet cathartic and liberating. The weight of our future becomes focused and a bit closer when we are faced with these decisions. Thank You!

  • billybuc profile image

    Bill Holland 4 years ago from Olympia, WA

    I had this conversation with my mother nine years ago. I understand.

    There are no other words that are necessary.

    love,

    bill

  • Faith Reaper profile image

    Faith Reaper 4 years ago from southern USA

    Oh, God bless you my dearest friend. My heart goes out to you and your family. Please know you are in my constant thoughts and prayers for strength through all of this. My mother understood the doctors when they asked her what it meant if she no longer desired the feeding tube through her nose (which she held the record for ripping it out in the Acute Care) and down her throat and the huge oxygen blowing a tornado down her throat. My brother allowed the doctors to speak freely right there in the room where my mother was, so she heard every word, and she knew. My brother asked her point blank, did she want the doctors to put all that mess back down her throat and she very clearly said, "no". She had made her choice, and we honored that choice. Thank you for sharing your heart here about this difficult time in your life and family's life.

    Please know how much you are loved, Faith Reaper

  • billybuc profile image

    Bill Holland 4 years ago from Olympia, WA

    Weird, I know I commented on this awhile back. Well, what I said was....

    I had to do this nine years ago with my mother. I understand. There is nothing more that needs to be said.

    love,

    bill

  • Mhatter99 profile image

    Martin Kloess 4 years ago from San Francisco

    Thank you for this. I am DNR (but will accept pain mediation). We just went over this with doctor on Valentine's day. My wife is quite upset. Whereas my children, who don't like to see me this way (as does everyone else) are okay with my choice.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Eric, your message is powerful. And you are right. It is cruel to attempt to force them into our world. In theirs, the memories are happy and sweet. My Dad lives in a happy place. If it were not so, it would really break my heart. As it is, the family deals with the harsh reality and we visit him in his world. Thank you Eric, for the kind advice and for sharing your lessons with me.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi mjboomer. Thank you for being here and weighing in on a difficult subject. It is a subject that deserves our attention and the only way to overcome the fear is to have the discussion.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Bill, my true kindred spirit, they are the most powerful words - "I understand" and nothing more is necessary. Thank you!

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Faith, my precious friend, thank you. Yes, it is a difficult time but I am so determined to talk about this journey in hopes of helping others. These discussions are not easy but they are necessary. And, as families, we must honor the wishes of our loved ones as it is them who will suffer if we do not. Your mother trusted you to do so and you, in your unselfish and loving way, pushed your own feelings aside to honor her. It is the only thing to do for someone we love, isn't it? Sending you love Faith as I thought of you often as this one came together.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Oh Martin, I understand, from both your perspective and that of your wife and children. It is a difficult decision and a difficult conversation but someone we have to come to the understanding that quality is more important that quantity. None of us are guaranteed a tomorrow. Life is unpredictable and the time for the conversation that brings understanding can pass us by. We have a right to choose what we will accept and our loved ones have a responsibility to honor those wishes. That is why we have to be willing to talk about this openly and find some comfort in it. Thank you for sharing Martin. You and your family are in my thoughts and prayers.

  • Amy Becherer profile image

    Amy Becherer 4 years ago from St. Louis, MO

    My mom and dad had a DNR written up a number of years before my dad had his stroke in the case of a health crisis without hope. Had they not been onboard and prepared, when the doctor in the ER recommended life-support, mom would have been forced to make the decision while faced with a sudden life and death situation. Dad was grave, in a coma, with a bleed at his brainstem. He would never have wanted to be trapped in the limbo of life support with no chance of returning to the life he knew. Medicine today can keep people alive forever without a slim chance of recovery, or even the reality that they are alive.

    The saddest part of your piece, for me, Linda, is the feeling of resolve I sense in your beautiful, tired mom. I think of my mom, who has some dementia now at 85, following bypass heart surgery, and how sad I feel when she tells me she prays that God takes her in her sleep when she says her prayers at night. After over 50 years of marriage, when dad died she was lost. I feel your pain, Linda, and cried as I read the emotional pain of your realization of your mom's request. Death is inevitable for all of us, but acquiesing to it even one moment before it is time, is profoundly sad. I understand the necessity of preparing, but seeing our loved ones become too tired to look forward to the next day is more painful than a peaceful passage to eternity. Thank you, Linda, for your honesty and courage, despite your pain. Bless you and yours, my friend.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Amy, you are such a tender heart and a minister to those that need you. Our journey is no different from others in this life and we are so blessed to have so much love in our family. Yes, this is sad. It breaks my heart to hear the tiredness in my mother's voice. But Amy, how many children have parents who love each other so much that one doesn't want to live without the other? It is a true blessing. This preparation we are proceeding with is part of the journey. There are lessons in each and every step and I am confident that we will have no regrets when the time comes. Thank you Amy, for sharing your story and for caring so much. You surely have earned your wings and halo while here on this earth.

  • grandmapearl profile image

    Connie Smith 4 years ago from Southern Tier New York State

    My Mom had her Living Will in place with all her wishes written out so that I would know exactly what to do if the time came. All down in black and white. I also knew from many conversations with my Mom that she did not want to have heroic measures if there would not be any quality of life afterward.

    The shock came when my Mom and I were headed home from lunch. I never made it out of the restaurant parking lot. She passed out in the front seat; I stopped the car, went around to arouse her without any response.

    I searched the lot because I didn't want to leave my Mom alone if I didn't have to. There was one person leaving, and I hailed her. It turned out she was a retired nurse, and she offered to stay with my Mom until I could call for an ambulance.

    When I returned my Mom was awake, but she kept saying "just let me go." The ambulance seemed to take a whole lot longer than it should have to arrive. When it did I had a bunch of questions to answer about my Mom; they loaded her into the vehicle and were off.

    I saw her again in the hospital and remember them telling me they were having trouble stabilizing her. They asked if she'd ever had any heart attacks! As it turned out, she had had a massive coronary and they also found that she had lung cancer! I had no idea. I was told she would have no quality of life if she survived.

    I knew her wishes, so I asked them to shut off the resuscitator and in minutes she was gone. My best friend was gone, just like that. My heart was broken, but I was so glad that we had discussed all this and that she had put it in writing. I could not have made that decision on my own at that time. She died in 2004, but she is with me still every day.

    I guess that's why I'm writing such a long comment. To echo the need for this to be done, as hard as it is, before the inevitable happens.

    My heart goes out to you and your Mom and Dad. I wish you well, no matter what my friend.

    Pearl

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Pearl, I feel your heart in every word and I appreciate your sharing such a very personal story. You honored your mother in your decision and I hope you find some comfort in that. These decisions are hard but they are nearly impossible to make in the midst of a crisis. There is a moment, no matter who we are, that is selfish and we are never really prepared to say goodbye. But when the decision is made after all the conversations have taken place, it removes all doubt and someone we do the right thing in spite of our own feelings. It is so important.

    Thank you for your kindness. Your comment really touched me and I appreciate your concern and friendship.

  • mary615 profile image

    Mary Hyatt 4 years ago from Florida

    I have had this discussion with my family, and they know my wishes. I have a DNR, too. I had a dear friend whose mother and her family completed a DNR, and after several emergency trips to the hospital after strokes, the family decided to put the DNR in place. They thought it was time to stop trying to revive her. The paramedics ignored the DNR completely saying it was their legal duty to administer life saving techniques. She lived another 4 terrible years.

    This was in Florida, so laws may differ in other states.

    Good informational Hub. Voted it UP, etc.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi Mary615. Thank you for commenting and sharing the story of your family and friend. The laws are different in various states. Here is my state, a physician must sign this bright yellow form that must be placed in an obvious place and the paramedics are required to honor it. As you stated on facebook, this is a sad topic but it is so much easier to make these decisions before there is a crisis and we must be willing to have the conversation. I am a firm believer in choice and preparation. Thank you for supporting that belief.

  • dementiacaregiver profile image

    dementiacaregiver 4 years ago

    Thank you for this post.I lost my father to Alzheimer's last year and even though my 84 year old mother mind is still sharp, her heart is very weak. It never occured to me until reading this article what her wishes are.I think the time is now that we had this conversation.

  • lrc7815 profile image
    Author

    Linda Crist 4 years ago from Central Virginia

    Hi dementiacaregiver! I'm so glad you visited and left message. You have traveled this road and and have the bumps and bruises too, I'm sure. It is so, so hard. We moved my Mom and Dad into assisted-living today and I have cried until there are no more tears. I know we made the right decision though. It had just become too hard for any of us.

    Putting the DNR's in place was emotionally hard in the beginning but once it was done, there was an overwhelming sense of relief. It is hard to decide when to have the conversation. It is so important to do it though. I will be thinking of you as you move forward and hope that you will soon feel the relief that we feel since taking this step.

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