19 April 2016
Richard, today you were standing in the hallway, and you looked like my husband, the old you. That was really wild and beautiful to see, if only for a minute.
6 July 2016
Today is our twenty-fifth wedding anniversary. What a crazy ride. I haven’t written in so long, and much has happened. I bought us a bottle of Veuve Clicquot, our favorite champagne, but Richard wasn’t that interested. It wasn’t one of his better days. The first time Richard bought me a bottle of champagne, it was Veuve Clicquot. And we’ve been drinking it ever since. We always bought a case at Thanksgiving, and it usually lasted us until New Year’s. But if not, we’d just buy more. There was always something to celebrate. Drinking it now just makes me sad.
20 July 2016
Our anniversary was a very hard day for me. Yesterday was my birthday, and that was hard too. I had wanted to go on safari for my sixtieth birthday, combining it with our twenty-fifth anniversary for a big adventure. We went to Ireland for Richard’s sixtieth birthday. Richard chose Ireland; I chose a safari. There will be no safari. Not now. Not together.
That aside, I certainly didn’t expect to be in the situation we are in. Not in my wildest dreams. I don’t regret it and know I am here for a purpose, but it’s one that I could have done without. I was very happy the way I was.
Managing the house is a lot of f’ing effort. But it’s becoming a fine-tuned machine.
Managing our finances is beyond tricky. Richard would shit if he realized the big nosedive we are in. He’d be livid. My consulting work has taken a big hit since I gave up my happy life as a road warrior. I only work locally now and not nearly enough to get ahead. I often tell people it’s a good thing I love my husband as much as I do, or I’d be really pissed about the costs. But like I said, I could not not do this. And I’m scared to death.
I miss being with you alone, Richard. I miss sleeping in the same bed together. I miss our cuddles and affection. Sometimes we dance together, especially in the mornings after your shower, when the caregiver is making us breakfast. I love that. You still have some moves. And sometimes your kisses still take my breath away.
30 August 2016
So many couples live together in unhappiness for decades. But Richard and I are deeply in love and are being robbed of our time together. I hate the irony.
25 September 2016
My dear sensitive husband and his caregivers are not allowed to watch or listen to the news. Ever. It upsets him. If someone got shot, he’s afraid we’ll get shot. If there is a house on fire, he’s concerned that our house could catch fire too.
But there are lots of sports to entertain us. March Madness is the best, of course. Formula One races. Horse races. When American Pharoah won the Triple Crown, I thought he and Kathy would blow a gasket (whatever a gasket is). Winter and summer Olympics. The World Cup. Track and field. Men and women, college and professional sports. There is always something to watch.
We watch either sports or nice TV, like the documentaries about adorable baby animals or movies with happy endings. That’s all that is allowed. Last December, Kathy got Richard hooked on Christmas movies. I can’t stand them, but they both got teary at the gushy, sentimental parts.
And there is lots and lots of music. Favorites include Joe Bonamassa, Frank Zappa, Pink Floyd, and Santana.
We start every day rockin’ out. We have classical piano to settle us down. We have music for every occasion and situation.
Perhaps we should all live our lives this way. Forever the poet, Richard said just other day that we are “living in the days of thunder.” Truer words were never spoken.
2 October 2016
My dear husband has Parkinson’s disease and Lewy body dementia. It’s taken over our lives. I fight a battle every day that I will not win. He won’t win. We just make the most of what we have and try everything at our disposal to prolong his inevitable fate.
Some say I’m a fabulous wife. Some days I think I’m a fool. Richard’s ending won’t be fast, and it won’t be pretty. It will be costly and emotionally draining. No drug will save him, and although there is hope for future generations inflicted with these diseases, it’s too late for Richard. I can make it the best it can be, but it won’t change the outcome. I know that, and everyone else knows it too. I’m doing the best to manage the change that nobody wants. And it sucks.
Sure, there are many things to be grateful for, and I am. But it sucks and has fundamentally changed my life in a way I didn’t want and have a hard time being cheerful about.
But I have to keep going. I have to provide for our family and for myself. I have a lot to manage, and I get up every day determined to make it work. There is no other choice, whether I like it or not.
I’m not alone in this challenge. There are millions of caregivers and soon-to-be grieving widows and widowers just like me, with every imaginable background and story.
NOTE:
This is a chapter from my book Parkinson’s: A Love Story with Dementia for Dessert. You may find it on Amazon. https://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?ie=UTF8&qid=1542135434&sr=8-1&keywords=Parkinson%27s+A+Love+Story+with+Dementia+for+Dessert&dpID=41xS3edPH0L&preST=_SY445_QL70_&dpSrc=srch Your feedback and reviews are most welcome.
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