My father Tom was diagnosed with early-onset Alzheimer's at 58. Eight years later he sits in a nursing home as a shell of his former self. These entries help me process losing a father as he loses his memories and is robbed of his golden years.
Along with the Alzheimer's Association, I hope we can help to bring awareness to the growing epidemic to avoid future heartbreak.
I’m so sorry to hear about your concerns for your father. If your suspicions are confirmed this is going to test you and your family to the limit; Alzheimer’s is a disease that affects family and caregivers more even than the victims of the disease because we are constantly aware of what is being lost. The good news is that you are not alone. I am happy to help with any questions you have, and you have a huge resource with the Alzheimer’s Association including support groups and meetings. Try to remember that in this uncertain time.
Our first indicator that dad was sick came from him. He had always been as sharp as a tack, so when he stopped being able to do simple math — to figure the tip on a restaurant bill — it caused some concern. My sister thought it was his way of being playful and silly…we soon found out he was a master of denial about what was going on.
The confirmation we really needed to get the ball rolling on diagnosis and treatment was having a family member, one of dad’s nephews and best friends, confirm that there was something off. Dad was distant, not as quick to joke around, and couldn’t figure out simple things he had been doing for years. His home stereo, for example, was as now as confusing to him as a NASA shuttle console.
My mother, who had long since been divorced from my father but maintained a friendship, was the one who finally talked him into, and took him to see a doctor. The thing is, my father knew, and yours probably does as well, that something wrong. Pose a trip to the doctor as, “Hey, this is probably nothing, but let’s go find out just to be sure,” and I think your father will be more responsive and less afraid. Make sure he feels safe, and make sure you and your mom are his advocates to help him through what I can only imagine is a terrifying experience.
You don’t want to wait too long because there are medications he can take to help keep the disease at bay for a little bit longer, and there are many things you can do to help keep his brain healthy including music, games, and exercise, but we’ll get to that if we need it. Just don’t let fear stand in the way of getting him a diagnosis, or finding out what, if not Alzheimer’s, it is; I wish we had taken him to the doctor at least a year sooner than we did.
Again, I’m always here to answer any questions you or your family may have. I’m wishing you all the best of luck and health.
I just went on a two hour walk around Greeley, CO to spend some time in nature to celebrate what would have been your 68th birthday. Not the most beautiful part of Colorado, specifically where our hotel is located, but once my phone died, the music stopped, and I was forced to really listen to my surroundings. It was a good walk overall. I love being back in Colorado, especially since I know that this is the state you found to be the most beautiful, and where you decided to settle down with mom; it means that much more to me now.
The only time I found myself feeling sad on my walk, was remembering the time I flew back from New York to visit you. I asked you to pick me up in Denver, thinking we’d have a full 7 1/2 - 8 hours to spend together on the drive back to Durango. I thought it would be different this time…that we’d have something to talk about, but I felt your frustration at putting those extra 700 miles on your old van, and I was angry that we had nothing much to say to each other. I hated the way your van rattled as we drove, and that you refused to go over 55 MPH. You didn’t have a tape deck or CD player so much of the ride was spent in stony silence. I hated that trip. I couldn’t wait to get out of the car. Now I would give anything to take that trip with you again, and I know you feel the same way.
I looked up at the sky on my walk and studied the clouds, let the sun shine on my face, listened to the insects chattering all around me, and I felt you, dad. I hope you didn’t pass on with regrets that we didn’t spend more time together. I know we will. And maybe this is the way things needed to happen. Maybe we wouldn’t have seen each other this birthday regardless of the fact that I’m in Colorado. I think that might have hurt more than anything.
I miss you. I wish I could have one last hug from you. Happy birthday, dad.
"Some day he’ll come along, the man I love…"
So goes one of my favorite Gershwin melodies. I remember belting that and “Someone To Watch Over Me,” my all time favorite, out at Marie’s Crisis in NYC, the best gay piano bar in the country, when I first moved there. Always, in the back of my mind, no matter what man was in my life, I thought of dad.
And then I found the man I love. The man who had every characteristic I adored in my father—artistic, hilarious, charismatic, kind, smart, handsome—and more.
Matt arrived in Rhode Island after a long three days of traveling and shooting in Utah. He brought Gilda along with him because he knew I needed her almost as much as I needed him. Being away from them for two weeks while I lost and processed losing my father, was beyond difficult. Sitting out in the garden on the phone with Matt while I sobbed the words, “I can’t do this. I can’t. This is too hard,” must have been just as hard on him to hear knowing it would be another week before we were able to hug.
When he arrived, it was calm. I was tired, more than tired, bone exhausted, as was he for different reasons. Matt’s father drove us to their place and I hit the bed immediately.
The next morning I realized that I finally had him. The man I love was finally there by my side. I couldn’t stop smiling.
Throughout all of this, Matt has taken care of me. He has supported me when I couldn’t move from utter despair, and always finds little ways to make me comfortable and happy. He rubs my back (and elbows out the knots like nobody’s business) when I need it. And when we had a delay in Atlanta with no dinner, he brought chips and sweets back from the vending machine. He never stops trying to make me happy.
My cousin and I got into a discussion about how similar dad and Matt are. And how Matt has exactly what dad never had: stability. Both Kelsey and I were lucky to find that in our mates. With Matt there is the added unconditional acceptance for who I am, and the ability to see who I am even when I couldn’t see it. Matt helped me feel like a star, when I felt like a black hole. He helped push me in the direction of finding what I love to do, and I’ve never been happier.
So, thank you, dad. For being am amazing role model, and for showing me what was missing that you were unable to stick around. I found the best parts of you, and then some.
Matt, I don’t know what I’d do without you. Forever and ever.
Was that only three weeks? It felt like a year of my life.
I experienced some of the lowest lows and highest highs I can remember on record.
Family and friends pitched in to help create a beautiful memorial for our father. Not much planning was done other than on the food end from my cousin Emry and the boarding end from my aunt Jeanne. Saints, both of them. My uncle Jim hosted everyone at his pub in Putney, VT (stop in if you happen by—J.D. McCliment’s!) and cousin Sarah took the reigns when I needed it. These are the family we’ve always been closest with, and the weekend spent with them was so healing for me, and for Kelsey as well.
Kelsey and Frank (and baby O!) took me in for two weeks and made sure I was fed, clothed (Kelsey and I went shopping when I realized I’d be on LI longer than expected) and hugged. Most importantly, hugged. Loved. It was my home away from home and I’ll never know how to repay them.
Two BFFs Kate and Marcy, two friends beyond compare, took me out for a night of debauchery when I needed an escape. Bubbles were consumed, squeeze cheese was spread, and so many songs were sung. They’ll never know amazing it felt to know that they’d be down for whatever, whenever, and were there with one goal: making me smile. A special shout out also goes to Chris who went through something similar as a teen, and who had exactly the right words and exactly the right hug when I needed it most.
My BFF for eternity, the one whom I’ve been through hell and back with, Kirby, drove in to Jersey City so we could check out our old digs, and then drove up to VT, along with Marcy, for dad’s memorial. Amazing, wonderful friends.
Memories I’ll have with me forever and ever…
Dennis, dad’s friend since childhood, the one who coached me in acting, and helped me survive NY in my early years, hugged me and cried when he saw me at the memorial. I had never felt more of a fatherly connection with him. His speech was as eloquent as I expected, and shed some much needed light on our mysterious father. The most touching story was of when dad came to visit Dennis in his apartment in Brooklyn. Dennis asked dad if he could throw some paint on his fireplace, which had been painted a stark white by the previous tenants. Dad sat in front of that fireplace for two days, like Rembrandt, my cousin Emry said (or maybe it was uncle Scott?) and then painted the most beautiful, intricate, gorgeous painting for his best friend. We were all in tears.
Dad’s brother Dean spoke and had us all in fits of tears and laughter. He reminds me most of my dad. So funny, so dry, so corny, and so, so sweet. He said their brother Paul was the comedian and that they’d have to yell, “Paul! Stop making mom and dad laugh! You’re killing them!!” Dean spent so much time letting Kelsey, Livi and I know we were cherished by him. I am realizing how little I let our extended family in and that needs to change.
Every second I could spare to get a hug from my aunt Patty, I did. We were so close with her as children. I’m going to make a point of going to visit her more often. We are so lucky.
Seeing Matt sit with his entire family at the memorial made my heart swell. They all took the time and made the trip. I can’t say I’m surprised, but I don’t know if they’ll ever know how much that meant. Matt’s father picking me up from the train station with a huge hug. Matt’s mother kissing my cheek and calling me sweetie when we left RI. And her telling me that they were much better now that I was there when I asked how it was going.
My mother and I, while we had a rough week together surrounding dad’s death, have made up. There is no time for hard feelings and negative energy! With distance, I was able to see where she was coming from, and really truly appreciate that I have a mom who will drop everything for me if I need her. I need to remember to need her more often.
The laughs. Oh my god the laughs. We spent so much time laughing at stories from dad’s family and friends, and when we got a little too rowdy later at night, we really lost our minds. Marcy, Kirby, Sarah Beth and I recreated a scene from the McMurray dinner table with Aunt Jeanne starring as Paul…her trying to take a photo of us with an iphone will always be the funniest thing of all time.
Kelsey and Livi dancing at the end of the night when I threw on some dance hits in the pub…why did I not take video? Kelsey jumped up and down while Livi threw her head and hands back and JAMMED. It was a baby rave.
Swimming the next day in the water hole with Sarah Beth, Matt, Emry, Jeanne and Lynn, my sweet, sweet Lynn. Such a cool lady, and always down for a good time. I can’t wait to see more of her in Vegas, her home town.
Sitting on the porch with Sarah, Emry and Matt, talking about family, life, and everything in between, is one of my favorite moments. But then, when we all bonded over our love of Justin Timberlake (sorry to rat you out, boys) god that was great. Something about it just really hit me.
There are so many little moments and smiles and hugs and, god, it really was an amazing way to end and awful reason to have to get family together.
Dad, I miss you every second. I can’t process that you’re actually gone, except that you’ve been gone for a long time. Still, I remembered to tell people about how music brought you out, and how you snapped like a champ, even when you couldn’t move, you tried. I know you were there in spirit during the memorial, and you were so, so love. Such an amazing man, an amazing person, and a wonderful father.
What I can do now to keep your memory alive is to never stop fighting for a cure for Alzheimer’s. I will make it my mission. I will not go through this again without a fight.
But beyond that, I can now see how much negativity affected my life. When Dean asked what we’d do with your ashes, and I told him Kelsey and I would take a cross-country road trip to spread your ashes when we see a breath taking or beautiful scene, it made him cry with joy. He said that’s exactly what you’d like. He said you loved to go and sit and connect with nature. To meditate on life, surrounded by beauty. Dennis said you could point to the sky and see hundreds of colors, not just blue. See how the blue fades to purple and then orange, you’d say.
So my promise to myself, and to you, dad, is to life every single day to the fullest. I’m going to remind myself how precious my family and friends are and let you be a reminder of how final and heartbreaking it is when they’re gone.
I am going to burst through the fear that arrises, because I know it will. I will not let it stop me. I will not let the questions I have about the future hold me back. I will take chances and ride roller coasters and scream and jump and shout and LIVE. I promise.
There is something that switches inside you when you lose a loved one. A switch that you hope will illuminate life and crystalize the meaning of all of this. I think that happened with me. I see what this is all about. I get it. I don’t have the answers, but I get it. Be kind. Be good to yourself. Try as hard as you can. Never give up. Love with every ounce of your strength. Beyond that, nothing else matters. Because in the end, you’re gone. Right now…you are HERE.
(I started this post yesterday, the day of dad’s death. Also known as the longest day of my life. I don’t want to forget anything. I need to write it down.)
Today is oddly joyful. It has been eight years of progressively difficult situations, incomprehensible sadness, guilt, frustration, anger and every possible dark emotion and thought a human being can have. There have been intense highs and extreme lows; major pity parties thrown in for good measure. So now that it’s all over, my first emotion is sadness followed by immense relief. Relief, a strange, and wonderful emotion I didn’t even know I missed. I’m trying to enjoy it until it’s gone.
We stayed with dad for as long as we could, and it was torturous. The first three days of waiting for him to go, were hard, but the final day, the day we all knew deep down would be his last, was the worst day of my life. The only thing I can equate it to is what I imagine a heroin addict feels going through withdrawal. The symptoms weren’t there, but the overall feeling of absolute restlessness, and a need to be satisfied, to feel relief from this pain, was. I needed something. I couldn’t concentrate on TV, movies or books. I didn’t have drugs. I couldn’t handle the thought of trying to meditate—though that probably would have been the best thing—so I played Candy Crush. Obsessively. I realize how ridiculous that sounds, but it was something simple to focus on; I couldn’t pass the level. Maybe I didn’t want to.
We were in fairly good spirits when we arrived that morning. The fluids they had tried to give him in the days proceeding, that would pool in his mouth and slide out the side of his face, were gone. He was shrinking even smaller than his meek 80 lb frame, and he just looked like he was drying up. Still, from time to time, tears would pool in the concave recesses of his eyes. Tears.
There was a moment that will live in my memory forever. It eclipses the moment that he opened his eyes and looked at us only 24 hours before he died. It was a moment that only Frank and I saw. Kelsey was paying dad’s nursing home bill on the computer, and Frank and I just happened to be staring at dad. Watching his chest rise and fall. You can’t not look at someone in that state half expecting them to stop breathing, and then he did. It was only for 1, maybe two seconds, but it happened, and seeing that worse than anything I’ve ever seen in my life. The only way I can describe it is: scary. It was terrifying. But he started breathing again, and it happened so quickly that all Frank and I could do was look at each other, white as ghosts, and say nothing as to not freak Kelsey out. (I did eventually tell her.)
As soon as that happened, I realized I didn’t want to see this. That’s just too much. And as the day wore on, and Kelsey decided she needed to know what we were going to do; when should we leave.
Another of our favorite nurses, Jackie, was very honest with us and we needed it. She told us to go. She said we didn’t want to see this, and that dad didn’t want us to see it either. She said that every touch, every word, everything we do might be making him hold on longer. I’d never thought of that.
So we decided, through tears, to say our final goodbyes and leave.
And then we got drunk.
And then, at 3:15 in the morning, we got the call. We didn’t need to see who it was, we knew.
Today is the 3rd, and I am slowly crawling out of my skin again. I don’t know what’s worse, trying to sleep, or being awake. They both suck. Though I will say that having Livi, my 2 year old niece, here is good for the spirit. She makes us smile when there’s no reason to. Sure, he’s at rest and we are beyond joyful for that. But he’s gone and he was only 67. It also doesn’t help that we got absolutely no comfort or even respect from our mother. More on that another time when I’m not so insanely angry at her.
I don’t have my husband here, and that’s even harder. So the pity party is starting again. And that’s fine. Don’t judge anyone for how they mourn. People who spent their entire lives with dad never came to see him in the home once and listen, I fucking understand. It sucks. You only do what you are able to do.
So I’m going to find some things to make myself feel better, because sitting around and wallowing in my misery ain’t cutting it. I thought this would be easier. I don’t know why, but I did. I thought I’d processed everything, but there is still anger at how this whole dad situation went down.
I’m looking forward to seeing our family and some friends up at my uncle’s pub for dad’s memorial. I’m looking forward to piecing his life together since, when we asked our mother for stories about dad, she had none.
I gotta get out of here.
Before I sleep for as long as possible, I have to say that it’s amazing how many signs we’ve had from dad today. The car with the license plate “HAPEPAPA”, that drove in front of us on the LIE after we picked up dad’s belongings from the home. The funeral director was named Thomas Glenn James (what an amazing man he was, too…he helped make a terrible moment light and personal, and gives really good hugs), and then, as we returned to Kelsey and Franks, there was a Blue Jay sitting on the front steps. I am so thankful for the signs, dad. I’m so happy you’re happy.