Apr 212014

The greatest enemy of any one of our truths may be the rest of our truths. ~William James

My father doesn’t know that my sister, Alice, is dead. He doesn’t know that she had cancer, that she suffered, or that she, in a pain-pills-slur, asked to be buried in a red dress with no shoes.

My father doesn’t know that I am his daughter, Elizabeth Emily, the girl he nicknamed “E.E.” for brevity and affection. He thinks I’m my other sister, Valerie, because in his mind I am still twenty years old, not thirty. I am fifty pounds lighter, with a ponytail and headphones. In his mind, I have never changed his diaper.

My father doesn’t know he has Alzheimer’s disease. He thinks it is 1964 and that he has just signed up for another tour in Vietnam. He’s leaving tomorrow, so can we please stop worrying and press his uniform?

Some days, my father is not a man who needs Medicaid to share a nursing home room that barely fits three beds. He believes he is a California millalzheimers_association_pionaire with so many servants and staff members he can’t keep track of them.

There was a time I felt a naïve ethical duty to correct him.

You see, my father never lied to me. Not about Santa Claus or floating goldfish. Growing up, if I got caught in a fib, he’d gently warn: “Our Heavenly Father hates a liar.” I knew from his steady example that my earthly father did, too.

So, when the most honest person I’d ever met started losing his grip on the truth I panicked.

I remember the first time his reality didn’t match mine. He looked up from his hospital bed and asked, “Where’s Tippi?” I froze. I couldn’t remind him that he’d asked the vet to put his dog down three years ago. I couldn’t lie, not to him, but I knew the truth would be painful, confusing, and cruel. Luckily, my husband piped up, “Tippi’s in Texas.” Technically, this was true.

Several times I tried to tell my father the “real” truth about things he’d say. “We sold the house in Tennessee ten years ago, remember?” I quickly found myself unintentionally hurting him.

I needed help learning how to give him back the very thing my “truth” and his Alzheimer’s disease were taking—his dignity. In the worst moments of seeing him succumb to the disease, I prayed. My prayers were answered by a few heroic nurses who showed me the tools for maintaining dignity: patience, creativity, consideration, and love.

The first nurse, an unlikely baritone, harmonized “Que Sera, Sera” with my dad when he started belting out the song at 2 a.m. The nurse could have demanded that my dad quiet down, or worse, he could have medicated him. Instead, he sang a few choruses like they really were listening to old records, and his reassuring voice lulled my dad to sleep.

Another aide with a soft pink sweater taught me that sometimes a shrug, a warm smile, and a Hershey’s Kiss provide more reassurance than anything we could say.

The best nurses taught me that when a loved one’s mind deteriorates, you must talk to his or her heart. Though they taught me, they never told me. Their actions spoke to my heart and changed it as I witnessed the kindnesses they shared with all the residents.

I remember watching a favorite nurse ask one reluctant woman if she was ready to come downstairs for brunch. This puzzled me because the nursing home stood one-story high and it was 5 p.m. But it made sense to the woman. I later found out why she grinned and hurried toward the dining room. Her mother had called her “downstairs for brunch” every day in her youth and her mind had returned to those happy days.

Another tired afternoon I heard a different elderly woman cursing and screaming. A flustered new aide, in a rush to get everyone to supper on time, had wheeled her out of her room against her will. She fully believed that she’d been kidnapped. She scooted to the edge of her wheelchair seat and thrust both feet at the floor, slamming an imaginary brake. Her hands clutched a plastic baby doll with no shirt and wild hair. She shouted for the police, for a gun, for Jesus.

A wise older nurse ran up to her, smiling an authentic smile, and put some sugar in her voice, too: “Mama, the baby’s hungry. Shall I take you to the kitchen and get her some milk?” The patient relaxed, nodded, and picked up her feet. She cradled her baby doll tightly and off they went with purpose, with dignity, with choice.

I once saw a beautiful young nurse let a gentleman believe she was his late wife. She blew him a kiss before she turned out his light.

Sometimes, my father thinks one of his nurses is one of us. He says, “Be good, honey. I love you.” She replies, “I’ll try. I love you, too!”

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

Now, when my father tells me he’s a millionaire or that a dead loved one has stopped by for a pleasant chat, I am happy for him. I relax and smile. He relaxes and smiles back. Our hearts connect the same way they always have. His reality is every bit as real to him as mine is to me, and it is okay for me not to shatter the truths of his world.

Alzheimer’s disease has tripped my father and sent him spiraling down a rabbit hole. His nurses have shown me that if I appear in a tree and tell him that this way is this and that way is that, he will simply lose his head. I have given up hope that, like Alice in Wonderland, he’ll wake up from his surreal dream and come back to us. The nurses who have loved and cared for our entire family have helped me make peace with the fact that he is headed to the same place the other Alice, my sister, has gone. These heroic nurses have rushed around in scrubs and coats like White Rabbits. They have hurried between our world and the equally “real” places and times in their patients’ minds.

I am grateful to these nurses for showing me the way through the darkness and chaos of my dad’s dementia. I will be forever grateful to them for showing me my father’s truth where it lies.

Author: Elizabeth Parker Garcia

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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  18 Responses to “Where the Truth Lies, An Excerpt from Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias

  1. My dad died this past August from Alzheimer's. It can be so confusing and perplexing for us when we have to enter their world, but so much more confusing and perplexing for them when we try to make them enter ours.. It is the more loving (but not always the easiest) to put aside how we remember them from days past and just accept them for who they are now… and that changes almost daily. The entire experience was a lesson in love for me.

  2. Exactly how I dealt with my mom. Thanks for the validation

  3. Thank you for this.

  4. Do any more words need to be said????? Beautiful…..

  5. You and your father are indeed blessed to have such warm, caring workers around him. They are the exception, not the rule.

  6. As I sit here, crying, I am so thankful that I read this. My mom passed away 5 years ago and had suffered with Alzheimer's for several years before that. My dad, while trying to take care of mom, developed dementia. I, too, had to learn not to correct his "reality." Dad was always in charge, and this person wasn't. It's so hard, the hardest thing I've ever had to do, but it helps so much to hear from others who have gone through some of the same things. Hugs and prayers to all those helping take care of our loved ones.

  7. Oh my-this is a beautiful and surreal story. My dad is at about the stage your dads in-he goes on some really amazing adventures and we’re just along for the ride. I’m grateful my dads not in any pain and he seems content with his surroundings. He lives in Fla and I live in CA and there was a time when I didn’t call him as often as I should(could) have for fear of that first phone call he’d completely forget who I am. My reasoning was ” the last phone call he knew me” that’s what I wanted to remember. But then guilt consumed me and I knew I had to change my thought process. I call him A LOT to keep his memory fresh of who I am- his daughter-who is slowly dying inside losing her father down that rabbit hole.

  8. Love your post! In the beginning you do try to be honest, now I just learned to play along and try to figure out what year or time my mom's mind is in. You have to learn to embrace this as hard as it is since your loved one as you knew them is not the person in the present. Your post was so helpful!

  9. both my parents have alzheimer, my sister and are are still caring for them. It's very easy to forget about the world they live in, I do not fight with the stories they tell just go long the journey with them. I miss my parents.

  10. I'll admit this story choked me up a bit. Such a raw, telling depiction of how taut the clutches of Alzheimer's can be. I applaud you for being able to accept your father's affliction. I'm truly inspired 🙂

  11. Thank you all for your kind words! It has been such a comfort knowing others can relate. Likewise, I found myself nodding and tearing up while reading so many of the other stories in the Chicken Soup collection. It's a great feeling knowing I am not alone! That said, I hope we can continue to work with the Alzheimer's Association to make sure future generations won't be able to relate to these stories!

    Best wishes to you all.

  12. Hi there,

    I am a fellow caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

  13. How profound it is to know the simple method of letting your loved one who has dementia have their beliefs. I didn't know until recently how much better (and easier!) it is to NOT correct my mom when she talks about things that she believes are true. I wish I (and the rest of my family) had known that long ago. It would have saved us so much unhappiness and conflict.

  14. Elizabeth thank you for your reflections. I just entered this rabbit hole about 2 months ago. Yes, my sister died 20 years ago and my mom talks to me like I'm my sister. My dad is going to come get her and he has been gone for 28 years. ANd how are her parents doing, well you know the answer to that. The first time this happened I went home and cried. Actually after every visit I go home and cry. Does it get easier?
    Thank you for sharing.

    • Leslie, I can't speak for everyone, but for me, it did get easier once I started to just live in the moment with my dad and go along with his truths. I try to cling to what I can… A shared smile, a good mood, a laugh. It is VERY hard and it always will be, but there came a time for me (and I hope there will, for you) when I was able to let go of who my dad was and help him as he is right now. If my dad is happy (thinking I am my sister, finding out his dead parents are "doing well," etc.) then I am happy that he is smiling and feels at ease.
      I hope you will be able to check out the Chicken Soup book. Many of the stories in it (mine is only one of 101) were so helpful to me, if only because they reminded me I'm not alone! And please take advantage of the Alzheimer's Assn.'s FREE 24/7 helpline and any other support systems and groups available to you…It really does feel like being thrown down the rabbit hole, but it's easier to orient yourself if you find those white rabbits who've been there, before.
      ::Big hugs!::

  15. What a beautiful, touching share.
    Living and working in Israel, meant that I couldnt get to see my dad very often, who lived in South Africa.I made it a point to call him twice a week, not because he could remember who I was, but because I knew who he was, the strong,"never fear when daddy's near" man of my childhood, right through to adulthood, until Alzheimers claimed him as an unwilling victim.He bravely fought against the changes taking place,sometimes questioning and repeating, until he couldnt put off or control the rapid progress.Our family couldnt care for him any longer, not because we didnt want to, but we didnt have the tools to cope.We moved him into a care-giving centre, where he was very happy, until his passing, a strong able-bodied man, but with memories of us his family, his life, and who he was completely obliterated.

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