Losing my Dad. Oh, so slowly…Posted: June 13, 2019
Years ago, I read One Thousand Gifts, by Ann Voskamp. The premise, that everything that happens to us is a gift, the good stuff and the tough stuff, is hard to swallow. I have an easier time understanding the truth of it when I look backwards. The challenge rests in being thankful for the difficulties as they happen, rather than miserably enduring them. I’ve spent a lot of the last year with my dad and, try as I might, I cannot muster up the faith to be grateful that he has Alzheimer’s. Watching him disappear into the disease is painful. It’s been a long two years since he was diagnosed, but I am finally ready to write about it.
I was sitting in my car when my brother called with the definitive results. “He definitely has Alzheimer’s, Joy. We just left the appointment and it’s confirmed.” We’d noticed stray symptoms for months, but this disease is tricky. It hid behind personal quirks, like the fact that he has always been a bit scattered, regularly losing his keys, wallet and phone. It also hid behind his funny personality. My dad has always been able to put everyone at ease with a well-timed, self-deprecating joke. When he couldn’t remember where the restroom was in a familiar restaurant, he turned to me and said in a crazy radio voice, “Now if one of you kind folks can remind me where the restroom is, I’ll be on my way.” His coping mechanisms kept the truth hidden as well. For instance, rather than admit he couldn’t read a menu, he’d ask, “What are you having? That sounds good, I’ll have that, too.” Alzheimer’s can lurk for years before denial and blaming other causes finally stops carrying enough weight. In my dad’s case, another disease, myasthenia gravis, caused one of his eyelids to droop and his speech to slur. A general confusion and lack of facial control associated with that disease allowed all of us to ignore his vision and depth perception problems as they began to change his capability. But at some point, we just knew in our guts something was off.
My mom went wading into the complicated world of health care to try to get help. My dad took an assessment and the doctor discounted the results. “This shows you can barely string words together; something must have gone wrong.” My mom explained that the facilitator of the test was rude, and it took place in a loud setting so my father couldn’t really hear her. The doctor ordered a new test. However, the insurance company was refusing to pay for the first test because the rude facilitator had also miscoded it. [Insert here months of waiting for this to be corrected!] Finally, my dad was reassessed, but the results were similar. More uncertainty. The next test was a brain scan, which showed where his brain was lighting up with activity. Unfortunately, the scan showed many dark spots. The part of his brain that translates his vision was dark. His vision is fine, his brain just mixes up the messages. He looks at his plate of food and his brain shows him there is no silverware next to it. He can feel the silverware. He knows it’s there. But for him there are not even shadows or blurry patches; he sees a smooth wooden table on both sides of his plate where, in fact, a napkin, knife and fork sit. He has learned to stop asking us where his silverware is and just feel around for it.
Shortly after the diagnosis, it was really clear he needed to stop driving, immediately. For all dementia patients, this is an early, but massive blow. It’s represents a loss of freedom and autonomy; it’s a public admission of what’s happening, a surrender of personal agency. The doctor strongly suggested my father let driving go but said she’d like it to be a family decision made together with my dad. I decided this was in my column, so I started by visiting for an extended time and asking my dad if he’d help me save money on a rental car by sharing his car with me. I promised I’d drive him wherever he needed to go if I could just use his car when I needed it. He agreed because he’d give me the world if I asked it of him. I felt a pang the first day I drove him to work. I knew he’d never drive again, but he didn’t. I dropped hints, opened conversations and he acted as if I were not speaking. One morning, a few weeks into the arrangement, he announced he’d like to use his car himself that day. When he got in the shower my mom and I looked at each other. Was this the showdown we’d been dreading? Who was going to be the bad guy? Neither of us has much experience standing up to him – he’s a dominant fellow and led our family with a clear, Father-in-Charge approach. In the end, we split the duty. I jumped in the car and fled the house leaving her to say, “Joy has taken your car. I’ll drive you to work today.” He realized then what we were up to and was not happy.
My dad has always been attracted to flash and these days he’s obsessed with the color purple. As a mental fog settles and his vision blurs, perhaps my dad’s senses are reached only with extremes. He listens to his radio at volume one thousand, he can eat ice cream all day, at any time, the sweeter the better, and he wants to wear purple clothes. My sweet mother acquiesces, and I noticed recently she even bought purple bedsheets for him. He’s talked her into buying him two sports coats this year – both purple.
I find it both exhausting and easy to spend time with my dad. It’s exhausting because his needs are relentless, and he requires way more care than he’d like to admit. Part of the challenge is giving him the care he needs while keeping his dignity and self-respect in place. It feels easy to me because I’ve parented kids – a similarly complicated process. At 5pm, as we head toward dinner, my Dad asks if we can please stop for ice cream on the way. “No, Dad, we haven’t had dinner yet”…. “Who cares about that? Who made the rule you can’t have ice cream before dinner, huh?” I watch him struggle to zip up his coat and then give up, leave it open and put his hands in his pocket. “Can I help you zip your coat?” I ask. “Nope, I don’t want it zipped right now.” At the end of each day he’s exhausted as he climbs into bed. “Did you take your medicine and brush your teeth?” I ask. He lets out a big sigh and gives an eye roll that competes with any middle schooler today. “Sheesh. Can’t a man get some rest around here without being pestered all the time,” he mutters as he gets back out of bed to do me the favor of taking his pills. I was walking with him in an airport and we were both pushing the cart of luggage. He likes to be helpful, but he can’t see where he’s going, so we have to do it together while I actually direct it. I noticed his shoe was untied. Without thinking, I stopped our cart, bent down to re-tie it and then we walked on. It was a simple act, hardly worth remembering or mentioning, but it stuck with me long after. It was muscle memory. That little act of love and care was something I’d done thousands of times for my kids and it flowed like water from me. I didn’t resent it, blame him or get frustrated by one more delay. I just dealt with it like the best moms do. Except, I’m the daughter.
In the beginning, I was desperate to get our family connected with emotional support, and I spent a lot of time that first summer understanding local resources. By chance, I caught the head of the Elder Care and Dementia Support Services from Sibley Hospital on the phone. At the first sound of her empathy, I burst into tears and she sat quietly with me. I asked a million questions about what to expect and timelines, and here’s the best line she shared with me: “When you’ve seen one case of Alzheimer’s, what you’ve seen is one case. Every person progresses differently, every family copes differently, every personality exhibits the disease differently.” She told me to watch my dad, know my dad and love my dad.
I know I’ve sat with friends as they’ve struggled through life challenges and I’ve said the exact wrong thing in those moments. I’ve been forgiven because they see my heart and they are grateful for my presence, but until I’ve been down a particular road, it’s not easy to know the best way to walk it with someone. Though my family and I have a way to go on this path, we are far enough along for me to share a few ways that are decidedly unhelpful and a few that have been life-giving.
In the unhelpful category is feeling inundated by all the stories of unknown people that are shared with me all of the time, especially if the point of the story is to show how annoying and frustrating these people with dementia can be with their repeated questions and their embarrassing antics. My whole family gets it, but we don’t benefit from hearing about it from people who are not in the trenches. Add to that all the well-intended medical or general advice. We’re with doctors, he’s in trials, rest assured he takes his medicine morning and night with my mom in charge and there’s sadly not much to be done for Alzheimer’s today. We are doing all we can.
In the helpful category are the people who have engaged him. The hardest part for him is losing the skills needed to occupy himself. When people call him, set up times to meet with him, invite him to lunch or dinner, he’s a different person (and so is my Mom.) Relief floods in. He’s not forgotten or overlooked (one of his fears); he realizes people remember him and miss him enough to call. Especially when preachers he’s known his entire career make an effort to call and encourage him, listen to him, treat him like he’s the minister he’s always been, he is buoyed.
When I am in town, I often read and respond to his emails and texts with him. There’s one particular minister who makes me weep from his loving emails. He shows my father So. Much. Respect. He has taken over a ministry my dad created, and he maintains such a delicate balance of honoring where the ministry began while taking it to a new realm. My father pesters him with emails and suggestions and can’t quite let it go, but this man responds without a hint of frustration. That’s helpful, showing my Dad grace.
Several women in my parents’ church community are the angels. Each Sunday they hand my mom covered dishes of curries, meats, vegetables, rice dishes and salads. My mom works full-time still (and we want her to as long as she wants to) and this helps her so much. Her evenings are full as it is and being able to quickly heat up healthy food for my dad and herself is a really huge help.
In the Alzheimer’s world there is a big emphasis on “caring for the caregiver.” My mom can win any endurance test set for her. She rarely gets frustrated or overwhelmed and has so much love for my dad that she doesn’t even see it as caregiving; it’s just life. Married Life. But I know she’s weary. The breaks she has when other people give my dad attention is all she really needs.
Along with the frustrations of living with this disease, there is also levity. If my dad is really comfortable and relaxed, he can laugh at some of his mistakes, like word mispronunciations, or forgetting which direction to turn at the top of the stairs in his home. Last year, before I moved back to the States, my parents visited me in Singapore for a trip of a lifetime. Together, the three of us visited Cambodia and Thailand and even made it to Indonesia for a day. We were a three-person team and commandeered help wherever we went. I had no trouble announcing, “this man has memory trouble and we need extra help” whenever we boarded a plane, checked into a hotel or even went to restaurant. My parents might cringe as I’d give the speech, but no one turned down the extra attention!
My dad had such a great time. Each day he’d smile at me and say, ”This is so amazing.” Amazing became the word of the day, every day. He had one bad day where he just couldn’t stay awake. We’d been running at full speed and had one more day to see and do the things on our list. Because he couldn’t stay alone in the hotel, we took him with us and he slept in the taxi all day as my mom and I got dropped off to see temples and do shopping. Our taxi driver, Chati, smiled and patted my dad’s sleeping tummy, “Papa stay with me today.” He’d drop us, meet us, drop us, and meet us all day until we went home to go to bed.
In Bangkok, we had a beautiful hotel suite in a fancy, but perhaps not-so-well-suited-for-us, hotel. There were no light switches, everything was run by an iPad. There were mirrors and glass everywhere. It felt like a fun house to my dad. We convinced the manager to provide a small reading lamp in the bathroom so at least my dad could find the bathroom in the middle of the night. Imagine this: We are all asleep and only the little light in the bathroom is on. My parents were in the big bed and I was around a partial wall in a twin rollaway. We didn’t have tons of privacy, but enough for us; we all settled down to sleep. I awoke from my typical insomnia, so I opened my iPad, put in ear buds and started to watch a random police drama. I didn’t realize it, but my dad had gotten up to use the bathroom and then he couldn’t find his way back to bed. In confusion, he wandered around the wall into the living area where I was hidden under the covers watching the moment the killer approaches the victim from behind. Just at that instant, I felt something sweep across my feet on top of the covers. It was my dad’s hand feeling for his bed. As the killer raised his knife behind the innocently unaware woman in my show, my brain thought, “a cat just ran across my bed, but what is a cat doing in this hotel?” The killer stabbed her just as my Dad sat down right on my feet! I threw the covers back screaming, he jumped up screaming, my mom leapt out of bed in the other room screaming, grabbed the iPad and lit up the whole suite like it was daytime and the three of us stood there screaming at each other in confusion. Eventually, we calmed down and figured out what had happened, and we laughed and laughed. As my mom took him by the arm back to bed, I heard my father say, “I still don’t know why Joy was watching a show in my bed!”
My father is a retired minister and, occasionally, still gives sermons. He has a lot of them in his head and his heart, but not all of them will get to be preached, we know. As long as he can give them, though, it appears people want to hear them. For right now, my mom has pieced together a great care arrangement. We understand my father’s needs will shift but, for today, it works. His assistant helps him for a few hours each day and they mostly respond to emails and texts and work on sermons. The assistant types up his spoken thoughts, reads Scripture to him and repeats this process day after day, slowly adding content and depth to the sermon for weeks at a time. When it’s ready, they announce that my dad will hold a seminar and the congregation signs up to attend on a Saturday morning.
On that day, someone will act as the reader, following along the outline of my dad’s thoughts, reading what my dad spent weeks saying and writing. My dad will listen to the words as the reader reads and will ad lib and expound when he wants. The reader will make sure they (mostly) stay on point to help my father deliver his heart. It’s a brilliant system.
Last fall, I was visiting before one of those sermons and we rehearsed the day before for about three hours. I played the part of the reader and my dad played himself, trying to remember what he wanted to say and what he wanted to emphasize. As soon as we had gotten through the whole thing, we started over from the beginning again. But, he’d already forgotten some of what he’d said the first time. I watched him experience frustration and anger and I could feel so clearly – maybe for the first time – what it feels like to be him. To be caught in this world of confusion and frustration but wanting so desperately to contribute and feel relevant. Relevancy has one definition to my Dad: to encourage people through the only vehicle he’s ever known – his voice in a pulpit. At some point, I suggested we take a break and he sat outside with “his birds.” My mom helps him fill two bird feeders every week and sits with him on the deck while he whistles and calls the birds. I went into my room and lay across the bed and wept for 15 minutes. The sorrow I felt was so deep. All that he’s lost and how hard he strives to remain, to stay with us as we know him, felt too heavy to carry that day. We reconvened at the table and hit it again, and he did a brilliant job the next day. No, he wasn’t the preacher he was in his 40s, but he doesn’t need to be. He was himself, as open and vulnerable as he could be, doing his very best up there to leave someone with some encouragement.
As you’d expect, he was exhausted afterward. The adrenaline was gone, people were surrounding him with gratitude and kind words, someone dimmed the lights to signal that it was time to leave the building. My father was just humming along, enjoying the post-sermon release as my family and I were huddled nearby waiting for him. We waved him over when he was free. He reached me first and I said, “Well, what a great job you did,” and he stuck out his hand to shake mine and said, “Thank you so much for joining us today.” He was gracious, but a little distant. I kept staring at him, shaking his hand a little longer than necessary and he politely pulled it away. I’d known that this would happen. I knew it was coming, this first time he wouldn’t know me, but I wasn’t prepared for it. I took his hand with both of mine and pulled him close and said, “Daddy, it’s Joy. You were awesome.” His shoulders sagged, he hugged me close and he knew it was me.
I’d trade a daddy who recognizes me for this one who is showing all of us how to hold onto hope, to desperately keep giving to others and living his testimony any day of every week. And twice on Sundays.
I still struggle to see his disease as a gift, to see it as something for his good, or my good. It’s ruthless and robbing and it reaches deep into a family. But I can’t deny there have been gifts along the journey of his disease, the most significant being that I find myself so close to him again. And P.S. we haven’t had another moment where he hasn’t recognized me. It will come again, I am sure. But he’s my Daddy and I’ll be his girl even when it happens the next time.
Happy Father’s Day to you.
If you have five minutes to watch part of his sermon about tenacity, I offer it to you, here: