The Alzheimer's Notes
These entries help me process losing an absent father to early-onset Alzheimer's at the age of 66.
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Dream
I had a dream the other night that dad was sitting up and talking.
Last night, in an Italian restaurant in Williamsburg, which has been around since 1900, I ate his speciality dish: linguini in white clam sauce. It was the best I’ve tasted since dad made it for me back in Durango what feels like centuries ago. I’m not sure what all of this has to do with anything, but we got an update the other day from the staff at Hilaire and they mentioned that he’s eating double the portions they had allotted him. I guess the point of this post is twofold and influenced by the fact that I’m LIRRing my way to him right now:
A) This disease is so unpredictable. We thought he wouldn’t live past February, but here it is April and he’s fighting on. He is as frail as I’ve ever seen a human in person…probably weighing about 80 lbs at most. Eating double portions? What are you up to old man? (Young man.)
B) There is still a small part of me in the very deepest, darkest corners of my subconscious that is whispering, barely audibly, “He’s getting better!” I quickly kill that horrible thought. You know better, brain. But because the Alzheimer’s brain is constantly firing to find healthy receptors, I wonder if he has those thoughts, too. I wonder if that has anything to do with why he’s hanging on for so long. Or I suppose it could have to do with the fact that he’s 66 years old and his body isn’t ready.
Random thoughts, I guess.
I’m in Huntington. Here I come, young man.
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Christmas
I’m sitting by dad’s bed on his last Christmas. I feel like I’ve processed everything that I can think to process and all I’m left with today are very raw emotions. But there’s always more trying to work itself out in my brain. Trying to understand why I’m in this situation. What do I need to take from it. What can I learn?
That I need to take care of myself. Be forgiving and kind when I make mistakes. Seal the bonds with family and friends. Live life the way I want, the way that makes me happiest and fulfills me the most. Be patient and understanding and laugh unless the tears are healing.
Dad did what he believed in. He created beautiful artwork and photography and left his mark on a small but important part of the world. He spoke when he had something to say. He laughed a lot and loved a lot even though his priorities weren’t in order at times. He is incredibly lucky he has two such forgiving and loving daughters because the one place he failed was family. But even in that he gave us a gift. We will forever remember being by his side in his final years, days, moments. His last Christmas is spent warm under blankets, his daughters by his side, listening to beautiful Christmas music and we are stronger because we didn’t leave him alone. Forgive the ones who’ve hurt you and open yourself to the love of others. You’ll never regret it.
Merry Christmas
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The Women
I’m on the train back from seeing dad, Kelsey, Frank and Olivia and I’m listening to Willie Nelson’s ‘Pretty Paper’. It was a good day.
Dad was bright eyed today. He smiled more than he has in recent visits. He seemed to see us with younger eyes. His smile was huge and he even babbled a few incoherent words here and there. This is the dad we want! We learned later that his favorite nurse, his “girlfriend,” is back at work and it all made sense. And because today was a good day and Kelsey mentioned that this post should be about how dad was always motivated by women, that’s what it’s gonna be.
I know it’s an odd thing for a daughter to write about her father but this says so much about who he was and why maybe he wasn’t the best father at times. When your dad doesn’t want to spend every minute praising your brilliant existence on earth you spend a lot of time wondering why. Is it me? It must be me. What’s wrong with me? But maybe it’s just that people have flaws and that’s just all there is to it. Dad’s flaw was he was an out of sight out of mind kind of guy.
The relationship I was most aware of was not with my dad and mom. They were divorced by the time I was eight and the years before that were good, from what I remember. There are a million photographs capturing our simple Colorado life. We look happy. I choose to believe we were. Mom and dad stayed friends throughout my childhood and mom always protected and loved him. She and her husband Ben looked after dad when he was first diagnosed with Alzheimer’s. When it got to be too much he moved in with his sister. I know mom wanted to do more, but she had a new life. I get it.
But mom wasn’t his first wife. Before her was Mary. I found out about Mary one day at the kitchen table when dad casually dropped it into a conversation. Another wife?Before mom? My mind was blown. I realized he’d had a life before we came along and I wanted to know everything. Who was this Mary person? Was she beautiful? Why did he leave her? Where is she now? Well Mary is now a part of dad’s life and has been since finding out about his diagnosis. She’s been to visit him more than a few times over the years and sends cards and hilarious yodeling pickle gifts. Mary is wonderful just like dad’s second wife, our mom.
But after those ladies dad really picked some losers. Losers he loved with the same blinders he’d had for his first two wives.
After mom there was a woman named Sandy. Or Sandra. Or Dick. Whichever you prefer. I could write a book about my disdain for this woman. She had her hooks in dad and nothing else in the world seemed to matter to him. Where is she now? Living her own life in Durango, presumably, without an ounce of concern for the man who worshiped the ground she walked on for what felt like decades.
As a grown-up I understand that Sandy had some major baggage from childhood, but as a kid I found her to be a real wicked stepmother. She found me threatening and tormented me as a result while dad nothing but adoration for her. But I won’t turn this into a hate post. She’s not worth the effort.
After Sandy came Diane who let dad pay her rent while he was living off his pension from his days as an artist for the Cleveland Institute of Art. And I’m pretty sure he’d already been diagnosed. A real winner.
I spent my whole life thinking if I was smarter, skinnier, prettier, more talented, funnier, etc that dad would pay attention to me. But it’s just who he is. He loves the ladies and the ladies love him. And thank god because it was awesome seeing those smiling, love-filled eyes today for his girlfriend/nurse, Tish.
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Happy Happy
Yesterday was such a strange day with many highs and one really low low on the chart. And yesterday is a perfect example of how I’m dealing with dad in a healthy way. I talk about therapy a lot. Here, on my personal blog, on my Facebook page, to anyone who’ll listen and some who won’t. I think everyone should be in therapy. It’s the greatest gift you can give yourself. How else would I have perspective on one of the most difficult things I’ll ever deal with—something 32 years in the making—my absent father’s further, and final, disappearance. Here’s where therapy helps me. When I have a day like yesterday where I wake up next to an amazing man, with a pup on my pillow as close to me as she can get. When we take the train to Long Island to see my sister, her husband and my beautiful niece Olivia and we watch Olivia crawl for the first time. When I then travel to Brooklyn to celebrate the birthday of one of my best friends and her wonderful husband. When I laugh so hard with my friends who help me make up a handle for a rap battle later that night. When I, yes, compete in a comedy rap battle at midnight and take 2nd place (thank yew) because my confidence is finally back and I like myself again and I want to and know I can do well. When all of that happens around one of the hardest and most depressing things I think I can imagine and I still find it beautiful, and the good far outweighs the bad, and I can hold that moment with dad in my heart and not let it wreck me and lead me to canceling plans with people because I’m curled up in a ball on the couch lost in my own dark world… When all that happens in one day I know I’m OK. There should be ups and downs. Sadness can co-exist with joy. Real joy. One of dad’s favorite songs we used to play for him was ironically ‘Man of Constant Sorrow’. Ironic because I was letting the situation color every aspect of my life. Constantly sorrowful. And at the risk of sounding further cliched and a little self helpy let me just state the obvious: this is all we have. If you’re going through something difficult and it’s affecting the rest of your life, go talk with someone. I don’t know why you wouldn’t. You can’t imagine how happy happy can be until you’re there, and once you’re there you’ll never go back.
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The Talk
Poor dad. I just want this to be over for him. For all of us. So today, at Kelsey’s urging, we had the talk.
The worst part of Alzheimer’s is not that it’s robbing dad of his memories and the ability to function on his own, the worst part is that he’s still in there, stuck inside his head and practically useless body, wanting and fighting to get out, to express himself and he can’t.
When we arrived he was sitting in his chair in the hallway, lost in the dark world in his head. Saying, “Hi dad” usually gets some sort of a response, but today he was completely lost. His expression mirrored that of the other second floor residents. Lost. We had to urge him out if we still could.
We wheeled dad into his room and held his hands, talked to him, tried to bring him back into the light. The TV off, I played Black Joe Lewis and the Honeybears, the band that snuck into his brain and found his rhythm and almost got him snapping last time. Kelsey, Matt and I smiled, laughed, talked and waited for him to come out. It took a while but once again the music got deep inside and his hands moved with the rhythm. He stuck his tongue out when I stuck out mine and we even got a few smiles. He’s still in there. I see it. He wants to get up and dance, hug us, smile, laugh, joke. He just can’t.
We sat with him for a while and then, as we got ready to go, Kelsey stopped me and said she had thought about it and agreed we should talk with him.
Lately I’ve been speaking with people who have lost a parent. One a close friend and one a family friend I haven’t seen or spoken with in years. They have both offered such comforting advice and calming words I can’t express my thanks enough. One of the things they both mentioned was talking to their parent and telling them it’s OK to go. Reassuring them that we’ll be all right without them. I didn’t know if dad would hear or understand, but our family friend lost a parent to Alzheimer’s and assured me he would.
I closed the door and knelt down on dad’s left, Kelsey on his right. We held his hands and looked in his eyes. I told him first that we know how hard this is for him. That we know this isn’t how he wanted things to go. How frustrating it must be. I told him that we know he’s in there and that we love him and want the best for him. Dad, who hasn’t made a peep let alone speak in a while, made a sweet little noise that sounded like a…bird or something. Kelsey and I both laughed and dad smiled. I looked at him and said, “We both love you so much,” and I swear on my life he whispered, “I love you with all my heart.” And if I my brain tricked me into hearing what I wanted to hear then so be it.
We told him he’s a good dad and then made sure to tell him over and over that we’ll both be OK. That we have each other and awesome, supportive guys. (One of which was outside the door waiting for me, the other at home with baby Olivia.) I told him he needed to do what was best for him and that we knew he wasn’t happy like this. We’ll be fine. We’ll be OK. You can go if you need to.
I don’t know if I was projecting comprehension on him or what, but it looked like he heard me. I really think he did.
I’ve been paying a lot of attention to the natural rhythm of things lately. Going with the flow and staying open. I feel like what happened today was at exactly the right time. Kelsey was ready, it seemed like dad was present enough to hear it, Matt was waiting to hug me, I was there to hug Kelsey… it all happened the way it was supposed to.
It was hard, there were and are a lot if tears, but I feel good about talking to dad. I said what I needed to say for me and him. I hope he goes soon. I just don’t want him to be stuck any more. Being stuck is one of the worst things we can be.
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I’ve Got The Music in Me
I’ve always had an obsession with music. I guess most people probably have, but with me its never one specific band, genre or singer. It’s just the song that mirrors my mood at any given moment. That one song will sit on repeat in my head and my iPod until my mood shifts. Ditching the song never has to do with growing bored of it, its always just…time to move on to the next one. I use music to help push myself deeper into emotions or sometimes avoid them all together. In general when I walk around these days my music is usually of the dancy variety. Im not avoiding and I don’t need help going deeper into emotions as I once did. I just want to dance.
As dad’s Alzheimer’s has progressed the two things he’s held on to are his sense of humor and his rhythm. When he lost his ability to speak he could still snap out an intricate rhythm to the beat of a song. He’d snap a rhythm I couldn’t have copied myself. It was incredible to watch. When music played at the home he would shuffle around with the nurses and at my sister’s wedding two years ago, when we all thought he’d need to leave soon after the ceremony, he was one of the last people on the dance floor. Incredible.
Yesterday I came out to Long Island to meet up with my sister and see dad together. We talked briefly about telling him it’s OK to let go if he needed to and agreed it was going to be uncomfortable. It felt like a cliche from a bad movie. We decided in that moment that the most important thing to do was avoid the situation a little longer and get Starbucks. And then get lost. And then, finally, an hour plus later, arrive at dad’s home.
There he lay, skinnier than the last time we saw him two weeks ago. I can’t imagine he can get much thinner by the time we see him next week, but I know he will be the way things have been going. He smiled when he saw Kelsey’s face. Any recognition at all is great and it seemed he was already a little more alert this week. We sat by his side and held his hand, rubbed his legs and head. Human contact. My mind was racing. How would this go down? It felt awkward already just thinking about it. I turned off the TV and played some music- the one non-dance song I’m obsessed with lately, “Your Song” covered by Ellie Goulding. I pushed play on my iPhone and her voice immediately transformed dad’s face. I felt the mood shifting and it felt like it might be easier to do this after all. I had set the mood. But then again…was I seeing tears in his eyes or was that just my imagination? There were certainly tears in mine.
It all became too much for my sister. She gently suggested we lighten the mood and play something dad would like. Somehow, clicking through Spotify, I came across the Lost Highway soundtrack. Willie Nelson played- one of dad’s favorites- and then a band called Black Joe Lewis & The Honeybears. I started tapping my knees with my hands to the beat and dad looked at me suddenly. He looked at my knees. And then he started to try and sit up and for a brief moment he snapped one finger. We both saw it and it was really incredible. There he was again, moved by the music.
So, instead of forcing the sad into the room so I can feel more comfortable saying something that maybe still needs to be said, maybe we can just snap and tap a little longer while it’s still in there somewhere. God knows I’d want a dance hit played.
