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<\/p>\n<\/p>\n
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The therapist said I’m grieving the loss of my father even though he’s still alive. She said it\u2019s a process that can begin early if the person is terminally ill. My father is 88. He was diagnosed with Lewy Body dementia six years ago. He also has advanced heart disease.<\/p>\n
In 2015, I began caring for my father. Over the past six years, I\u2019ve watched him decline. In some ways, it has happened slowly. In other ways, quickly.<\/p>\n
He’s had various infections and has fallen several times. A few times, he\u2019s been hospitalized. About 18 months ago, he was so sick from a urinary tract infection I wasn\u2019t sure he\u2019d make it out of the hospital. He did but wasn\u2019t the same, not even after a month-log rehabilitation.<\/p>\n
He loses something each time he gets sick, especially if he\u2019s hospitalized. He doesn\u2019t bounce back. He survives.<\/p>\n
I\u2019ve watched him go from a walker to a wheelchair, from living with us to moving to a facility. From independent living to assisted living to memory care. He has transitioned from (slowly) dressing himself to being dressed, from jeans to sweats, from continence to incontinence, from reading and watching TV to staring.<\/p>\n
The biggest change has been in his demeanor, the ponderous, interminable seeping away of the man he once was. His alert blue-green eyes have dulled, his expressive face gone slack.<\/p>\n
I remember his big, bold laugh\u2014head back, hand pounding the table. It’s gone now along with so much else, eroded by time and the injustice of this cruel disease.<\/p>\n
When I visit my dad now, I\u2019m not sure what will happen. Some days he is ok. He\u2019ll perk up when he sees me. I\u2019ll get a glimpse of my daddy. Other days, he’s a shell. He\u2019s physically present but not really there.<\/p>\n
Those days are the hardest because my father has been replaced by someone else.<\/p>\n
I don\u2019t think he remembers my name, but he usually knows who I am. Not always though. Some days it takes him a bit, such as earlier this week. I walked over, put my hand on his shoulder and greeted him, my mask down. He turned and looked at me, his eyes unfocused, confused. They swept past me, looking for a place to hand.<\/p>\n
\u201cIt\u2019s Eileen, Dad, your daughter.\u201d I said. It was the first time I\u2019ve had to say those words. I thought I was prepared for them but they sounded wrong coming out of my mouth.<\/p>\n
\u201cOh hi baby,\u201d he said, a flicker of light coming into his eyes.<\/p>\n
He was wearing sweat pants littered with bits of food. His hands were stained with something. I brushed away crumbs and took my hand sanitizer from my purse, pouring a little on his hands.<\/p>\n
\u201cOw,\u201d he said.<\/p>\n
\u201cI\u2019m sorry, Dad. I\u2019m trying to clean you up. Did you hurt your hand?\u201d<\/p>\n
\u201cIt hurts all the time,\u201d he said.<\/p>\n
The fingers on his right hand looked bent and swollen.<\/p>\n
\u201cDid you have a good breakfast?\u201d I said.<\/p>\n
\u201cI don\u2019t know,\u201d he said.<\/p>\n
Even just a few months ago, he remembered meals. He liked breakfast sausage and would comment on it. But the last few weeks, he hasn\u2019t remembered eating.<\/p>\n
I searched for something else. \u201cHow are you doing, Dad? Did you sleep ok?\u201d<\/p>\n
\u201cOk until we do that other thing,\u201d he said. \u201cThey\u2019re going to that place.\u201d<\/p>\n
He spoke a little more, \u00a0the words gibberish, a mixture of sounds and colliding snippets. Once I could tell by the inflection in his voice he was asking a question, but it may as well have been in another language. It sounded like nonsense, like what buzzing did that whatsit tapped doshie say?<\/em><\/p>\n I searched again. \u201cDo you want to hear some music, Dad?\u201d<\/p>\n \u201cYes!\u201d he said, light coming back into his eyes. \u201cPlay that one.\u201d<\/p>\n I wasn\u2019t sure but had an idea. On the last few visits, he seemed the happiest\u2014the most alive\u2014during \u201cWhat a Fool Believes\u201d by the Doobie Brothers. Each time he responded as if it were new but also familiar.<\/p>\n How can that be? How can something be both new and familiar? I don\u2019t know. It\u2019s just another murky part of dementia. But I see it on his face, in the way his head pops up and his eyes brighten for a moment. A window opens in his mind.<\/p>\n I wonder if it\u2019s like meeting someone and sensing you\u2019ve known the person a long time. Do they remind you of someone else? A positive experience? No specific memory is there, but the feeling is powerful. It has happened to me. A pleasant sensation\u2014a kind of warmth\u2014infused me. I felt drawn to the new person without knowing why.<\/p>\n My father is drawn to the music of his past, songs he can\u2019t recall but still remembers.<\/p>\n One day last week I played \u201cHelp Me Make it Through the Night\u201d by Sammy Smith. Her version has always been his favorite. As it began to play he said, \u201cOh yes\u201d and then closed his eyes. He went somewhere else, a place that looked so tender. I felt like an intruder.<\/p>\n I played a few more songs. After he opened his eyes, his chin dropping a little. He looked spent. He was tired. It was time for me to go.<\/p>\n Our visits have changed from a year ago, from four or five months ago. They’re music sessions now. We share songs and space, not much else. \u00a0Sometimes he cries and I\u2019ll squeeze his hand. He\u2019ll open his eyes and pat my hand in return, occasionally looking surprised to see me.<\/p>\n Then I\u2019ll play an upbeat song like \u201cFamily Tradition\u201d by Hank Williams Jr., and he\u2019ll laugh and sing\/hum along. I’ll sing with him. In those moments, he seems happy.<\/p>\n Or maybe that\u2019s what I want to believe, because other times he is agitated. He\u2019s always been a worrier, but dementia has magnified it. Sometimes there\u2019s a brittle edge to him. He\u2019s angry at someone who tried to kill him. \u201cThat a\u2014hole,\u201d he\u2019ll say. Underneath, there is something else. Sorrow?<\/p>\n During those times, I don\u2019t know how to comfort him. The other day, I prayed for him. I drew my chair close, our knees touching, and held his hand. After our prayer I read from the Bible, Matthew 11:28-30:<\/p>\n \u201cCome to me, all of you who are weary <\/em>and burdened, and I will give you rest. <\/em>Take my yoke and learn from me, <\/em>because I am lowly and humble in heart, <\/em>and you will find rest for your <\/em>souls. For my yoke is easy and my burden <\/em>is light.\u201d\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/em><\/p>\n Another day was different. I brought a few pictures I found tucked away in a box at home.<\/p>\n There were dozens of loose photos, some faded and blurry, others more clear. I spent hours combing through them, spreading them out on the table.<\/p>\n I looked for pictures of my father when he was young and vibrant. There weren\u2019t as many because he was usually the one holding the camera. But I found a few probably taken by my mother, because people\u2019s heads were cut off or the pictures were at weird angles.<\/p>\n Some of the photos looked so old\u2014yellowish and blurry. My mother was young and lovely with teased hair and perfectly arched brows. There was no editing of photos back then, no deleting the bad ones. You took your film to the camera store and waited to see what would come back. You might get four shots of a coffee table or someone in silhouette because the flash didn\u2019t work.<\/p>\n In one picture the 1970s is on display. My father is standing in front of an orange-striped wall. He has a mustache and his dark hair\u2014abundant, lush\u2014is brushed back from his face. He\u2019s wearing a green flowered shirt and smiling broadly. He looks handsome and vital.<\/p>\n In an earlier black and white business photo, he has a flattop and is clean-shaven. He\u2019s standing with a group of men, all wearing suits and skinny ties. He\u2019s in his 30s but looks a decade younger. One of the men is my uncle. The picture was taken when my dad worked with him in Alaska.<\/p>\n I take these and a few other photos to my next visit, hoping he\u2019ll be reminded of happier times.<\/p>\n But he doesn\u2019t recognize anyone except himself. He thinks my oldest sister is me and is puzzled by his brother. Something flickers across his face when he sees his favorite niece, but he can\u2019t name her. He doesn\u2019t seem aware or upset he can\u2019t remember. He\u2019s just blank.<\/p>\n I tell myself blank is better. He doesn\u2019t know what he doesn\u2019t know. The stress isn\u2019t his; it\u2019s mine. So why do I struggle with it so much? Why do I feel defenseless against searing pain?<\/p>\n Perhaps it\u2019s the suddenness of it, the way it comes out of nowhere and smacks me hard and fast. I\u2019m caught off balance. One second I\u2019m playing music and singing with my dad, my hand on his shoulder. The next I\u2019m biting my lip, tears streaming down my face. I turn away so he can\u2019t see me, afraid my emotion will upset him. I don\u2019t know why I\u2019m crying, except something within me aches so much.<\/p>\n Those are the hardest times, because they hit me sideways\u2014random, savage attacks. And even after I leave, I\u2019ll feel shaky for hours. I\u2019ll close my eyes to sleep and my mind will flash pictures of my dad\u2019s shrunken frame slumped in his wheelchair.<\/p>\n I’ll close my eyes again and see the faces of other residents, such as two women who tried to follow me out as I left one day last week. I\u2019ll see them furiously shuffling toward the door as it buzzes open, and then a staff member taking their arm and guiding them back. I\u2019ll remember that buzzing–the sound of my freedom and their captivity.<\/p>\n Recently a friend mentioned that long ago, grieving was acknowledged. After a family member died, women would wear black and withdraw from society for a year. They were given time to process their feelings. They were allowed to be sad. I’ve seen this in period movies and TV shows.<\/p>\n But not now. It’s a different time and a different world. People aren\u2019t supposed to be sad\u2014at least not for long. They need to be fixed.<\/p>\n I\u2019ve heard I should take antidepressants for my depression, sleeping pills for my insomnia, perhaps Xanax or medical marijuana for my anxiety. I should try yoga, walking or a hobby. I need better self-care and more \u201cme\u201d time.<\/p>\n I should be happy for my dad\u2019s good days and on the bad ones, grateful for this \u201crewarding\u201d time with him.<\/p>\n I wonder what happens when sorrow begins early, when it\u2019s more like a leaking faucet than a burst pipe. \u00a0No gushing water, just a tiny drip. But it never stops. Drip, drip, drip.<\/p>\n If I wore black, would it help? Would people let me cry? Would there be consolation in easing into it, in gradually letting it out? I want to think so, but I\u2019m not sure it would help.<\/p>\n Some days I think there won\u2019t be any relief until I break.<\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" The therapist said I’m grieving the loss of my father even though he’s still alive. She said it\u2019s a process that can begin early if the person is terminally ill. My father is 88. He was diagnosed with Lewy Body dementia six years ago. He also has advanced heart disease. In 2015, I began 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