Do not resuscitate

Sometimes I wish I knew how much my dad realizes about his condition. And sometimes I’m glad I don’t.

On Tuesday I visited my parents. My dad was sleeping while Mom and I had lunch and sat at the kitchen table talking. Over the weekend a nurse friend of mine, whose father died from Alzheimer’s a few years back, told me I should make sure we had everything taken care of and that we had a Do Not Resuscitate order in place.

This caught me by surprise. Initially, I silently rejected her suggestion. But as time passed and I began to absorb her words, I realized this was something we really needed to think about.

I told my mom what my friend had said. Mom said that both she and Dad had living wills with some kind of advanced directives. I’ve not seen the documents so I don’t know what is spelled out. Mom said, “My mother had DNR signs all over her house, but I was told that if we called paramedics, they would try to save her life.”

This is a sticky, uncomfortable issue to even think about, let alone do anything about, even though it is basically what we did with my sister Annie at the end when Hospice came in with their DNR comfort care protocol.

I’ve found some websites that discuss the ethical, legal, and practical implications of a DNR order. I know I need to sort through this all and make sure we aren’t left regretting our actions, or lack of, in the future.

I read around on the internet for a while and learned that you need a DNR order signed by a doctor. A living will is not enough. DNR orders can be gotten for anyone who has a terminal illness. Alzheimer’s is considered a terminal illness. A DNR order is not a do not treat order. Emergency medical services will provide some care. For example, they will suction the airway, administer oxygen, provide pain medication. They will NOT administer chest compressions or insert an artificial airway, among other things. This is in compliance with Ohio’s Do-Not-Resuscitate Law which you can download in pdf form here www.ohiocathconf.org/hopes_fears/dnrfrm.pdf.

The Time story, When does “Do not resuscitate” make sense? shares one doctor’s considerations of the question through a case study —
http://www.time.com/time/health/article/0,8599,1711170,00.html
. It’s a thoughtful perspective of the other side of the story.

Shortly after Mom and I had this conversation about DNR, Mom helped Dad get up from his afternoon nap.  She helped him into the kitchen with his walker and then transferred him into his wheel chair. It was about 3:00 but Dad hadn’t eaten since breakfast. Mom prepared a plate with a light lunch because dinner was only a couple hours away. I spread strawberry jelly on a croissant for Dad and then cut it into small pieces. He has a difficult time dealing with a whole piece of toast or bread with jelly on it and ends up getting jelly all his fingers. He doesn’t like sticky fingers and as a consequence, he gets jelly all over the table and himself.

Mom and I were trying to help Dad in small ways by moving his drink away from the edge of the table, and getting him napkins—just little things you might do for a child or someone who needs assistance. And my dad started crying.

I should explain that my dad cries often these days. Part of it, I think, is because he’s lost all of his filters. Sometimes Mom discounts it and says that often he cries over nothing and that he even cries at commercials. But whenever I’ve been there, I can always see a reason why he would be crying. One day I leaned down and hugged him before I left and said, “I know you’re doing the best you can, Dad. I’m so proud of you.” And he cried.

On Tuesday, at the lunch table, I asked him, “Why are you crying, Dad?” And he didn’t use words to answer, but pressed his closed fist against his chest.

“Are you crying about yourself?” I asked.

He nodded.

Mom had told me earlier that my sister told her Dad once said he felt bad that he wasn’t able to do anything for anybody else. He had spent his whole life doing things for other people.

“Are you feeling bad that you can’t do some of the things you used to be able to do?” I asked.

He nodded, crying all the while.

“You’ve taken care of other people all your life,” I said. “Now it’s time for us to take care of you.  Anyone who lives long enough will eventually need others to help them. It’s nothing to feel bad about. It’s the natural way of life.”

Several months ago, maybe even a year, when Dad was still fairly conversational, he said, “I never thought it would be like this.”

So, yes. Sometimes I wish I knew how much my dad realizes about his condition. And sometimes I’m glad I don’t.

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32 thoughts on “Do not resuscitate”

  1. Oh Christine, that is heart-wrenching. Anguish was the first word that came into my mind when I was reading the post. I can certainly understand why sometimes you are glad you don’t know how he feels. I’m so glad you write about it here. Take care, friend!

    1. You know, I debate whether or not I am sharing too much private and personal information. I continue to write about it, because there are many, many people suffering from Alzheimer’s and family members suffering with them. I’m just trying to shed light on some of the things we and they are dealing with. I don’t know if that is good, or not good.

      1. It’s a very good thing that you’re writing about it — first and mostly for yourself, you NEED to write about it! Secondly, I have no doubt you’re doing a huge service to others. I know my husband and I actually talked about your blog over lunch (his father & aunt both died from Alzheimer’s)! (were your ears burning? 🙂

  2. How sad. It’s difficult to watch those you love lose their independence for whatever ailments they suffer. None of us ever want to become dependent on others, thus as you said is the way of life if we live long enough.

  3. Losing the ability to communicate thoughts and feelings is one of the toughest aspects of Alzheimer’s . . .

    Good for you for intuitively hearing the thoughts behind his tears.

  4. I’m thoroughly sobbing now. Bless you for hearing your dad’s heart. Alzheimer’s is truly a cruel disease.

    As for a DNR, I don’t have to make those choices yet (as my Mom is still in control of all things Dad related) but the way I look at it is I have to do for him what I want for myself. I know that I do not want to continue if my brain has shut down so completely that there’s nothing left. I know that I do not want to be kept alive on machines as my brain continues to deteriorate. Life is simply not worth fighting for in that condition, so I personally would rather be left in peace.

    Hugs to you!

  5. I agree with the word …Anguish.

    All we can do is Love. And Christine….you love and have compassion.

    This post brought tears to my eyes too. Sending Metta (loving-kindness & compassion) to you and your family.

    And some virtual hugs too. I am proud of you all. Such courage. Such love. _/!\_

  6. I think you’ll find as you go along that writing this is going to be a way to vent, to express yourself, and something that’ll help you cope. It’s right to write it.

  7. I must admit that sometimes I question the value of blogging. But on days like today when kind digital words come from the hearts of individuals I only know through their own blogging and comments on my blog, I am so very glad I started.

  8. Your thoughts will help many who unfortunately are struggling with the same issues.
    Advance directives including a DNR are so very important to our loved ones. Even though it is not easy to discuss, it is vital to do so. Check out our podcast on Five Wishes, it might help everyone understand advance directives and what it means to families. Hope your readers find it helpful! Thanks for your thoughts in this personal piece!
    http://seniorcarecorner.com/senior-care-corner-podcast-episode-1

  9. Your message is timely for so many, and helps those whose lives aren’t touched directly by Alzheimer’s to understand what friends and others are dealing with. Your writing about it is good for you, and for us. I’m sure it helped your father immensely to have you understand what he is feeling, though he may be unable to express it. Hugs, dear heart.

  10. Christine,
    I just want to hug you. Your soulful story…the strength you have to share your life with us and the emotional road that comes with Alzheimer’s. You are just amazing…but then your whole family is amazing and always has been.
    Judy

    1. Thanks Judy. It’s so exciting for me when someone I know in real life comments on my blog.

      We’re no more amazing than anyone else. Everyone is just trying to do their best with the circumstances they are given.

      My dad was treated for prostate cancer about 10 years ago. Had he not been treated, he likely wouldn’t be here today, and we wouldn’t be dealing with Alzheimer’s. But we all got 10 good years out of the deal. So worth it.

  11. Beautiful post, Christine.

    It made me think of my grandfather who didn’t have Alzheimer’s but couldn’t communicate in his last days. In the last picture I have with him you can see the tears streaming down his cheeks because, here I was, pregnant with his first great-grandchild, telling I loved him, and he was helpless to respond. I saved the picture. I breaks my heart every time I look at it. And yet, I will always treasure that photograph because my grandfather himself was such a treasure.

  12. This is such a hard choice to make.. But we as a family also made that choice with my Mother in law… we were pleased that in the end we had made that choice, for the quality of life was no longer there… Your last sentence Christine I so know how you feel… sending you an energy hug! Dreamwalker

  13. Christine – I enjoy all aspects of your blog. Is this too personal? Not for any of us who have been through this. My grandmother did not die of Alzheimers, but a series of strokes took away her ability to speak and function. The last ten years of her life she spent in a shell. The woman who loved to visit spent the day watching cartoons and drooling. And she HATED television.

    At the end, one of the children (my Dad, Aunt or Uncle) called the doctor and asked if they should bring her to the hospital. Thankfully he said no, let her die peacefully at home.

    She woke up once towards the end, my Dad asked her if she knew for sure she was seeing her Lord & Savior, Jesus Christ. She said yes, and slept into eternity a few hours later.

    I’m so glad for the doctor that he had more common sense about this than my Dad & Uncle did (I’m pretty my sure my Aunt wanted her to stay home but the other two could be really stupid about the Game of Life).

    For those who haven’t been through this yet, you are helping clarify what is happening and allowing your experience to help others make similar decisions. I was only as involved as I was with Grandma because I was the one who lived the closest to her and saw her the most.

    Nancy
    http://dogear6.wordpress.com/

    1. I think you’re right. This is more of a universal matter, even though my examples are personal. It is part of the human condition. That’s what I’m interested in and what I try to write about.

      Thanks for your thoughtful response and sharing your own story.

      Like parenting, no one teaches us how to let go.

      1. Letting go is so hard to navigate. I think you’re doing well with your parents. It will never be a perfect process, communicating with your Dad when he can helps you & him both.

        Your insight and self-awareness is why I think your book with Annie will be a worthy story. Every family has a story, whether they admit it or not.

        Nancy
        http://dogear6.com/

      2. Thank you, Nancy. And thanks for the encouragement for my memoir about Annie. I often struggle with self-doubts. And truthfully, there have been times it would have been easy for me to abandon this project, if not for Annie. It’s my legacy for her, and that’s what keeps me moving forward with it.

  14. My husband has Alzheimer’s. For a couple of years we have been coping very well. He is old enough to be my father, so I am young enough to care for him. If I were his age, it would really be a burden. I don’t mind caring for him. I am thankful to have him.

    My husband cries very easily, too. I have read on the Internet that emotions are very difficult to control for Alzheimer’s patients. It’s part of the disease. He cries very easily over many things. He knows that his memory is failing. Sometimes he has short episodes of not knowing who I am. It’s awkward. I tell him that I’m his wife. (We are approaching our fifteenth anniversary of marriage.) He looks at me with serious doubt. Ha! We carry on. I love him very much, and I hope he lives as long as he can have some enjoyment out of life.

    Thank you for sharing your experience with your father’s Alzheimer’s. I don’t know anyone that has it, or has a family member with it, except my husband. I’m just learning as I go along. My husband must have 24-hour care. He is still able to go to the grocery store with me. This past week we’ve had some challenges with his ability to get around. I hope it will improve. One day at a time we will tread the waters of this trial. Blessings to you…

    1. I’m very touched and moved by your comment, Carol. Thank you for sharing it. Being young enough to take care of your husband has been a blessing, I imagine, but also likely a curse in other ways. My heart goes out to you.

      My mother is 77 and my father is 78. Mom has a very difficult time both physically and emotionally. She gets help from a home health aid about 15 hours a week through Dad’s long-term care insurance policy. That should last for about 4-5 years depending on how many hours she uses a week. It’s been a tremendous help so far. Like your husband, Dad cannot be left alone.

      Alzheimer’s is such a devastating and insidious disease. You have wonderful positive attitude about it all. I’m sure it’s not easy.

      I hope you will stay in touch.

      1. I’ll be in touch. Thank you for your thoughtful post and reply to my comment. It’s nice to know someone else that struggles with this challenge. I’m sure it’s very difficult for your mom at 77. I’m coping and trusting that I’ll get by and be able to meet the needs of my hubby. Blessings to you…

  15. Wonderful post. God bless you and Carol Ann. Sharing information about Alzheimer’s helps those who might enounter the disease someday in our families, or in ourselves.

    hugs for including us in the journey…hugmamma.

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