January 2015

I discovered there are people who specialize in finding care facilities for your loved ones—like a real estate person for those with special needs. This is a fantastic notion and a tremendous help. Margaret Roberts came to our home to interview us and determine our needs. She made all the appointments and drove us to each of them. Oh my God, she was a lifesaver. I am entering a new world with so much to learn.

Richard moved to a beautiful and brand-new memory care facility in Oro Valley on December 31, 2014. We liked it because it didn’t feel like assisted living. It had more of a resort feel, with great views of the Catalina Mountains and lots of activities. It snowed the day Richard moved in. December 31, 2014, was the first time I had a full night’s sleep in months.

Here’s the email I sent on Christmas Eve, 2014.

Dear family and friends:

Despite oceans of tears and hours of prayers— many of them from complete strangers—and our using nearly every intervention available on earth, Richard’s health continues to decline. The dementia remains our biggest opponent, and it’s winning. The Parkinson’s continues to progress rapidly as well. It’s impossible for him to focus or communicate coherently or manage his personal care.

So with great sorrow, I tell you that Richard will soon move to a memory care home. The one he chose is a brand new, high end lodge-in-the-desert-like place with great views of Pusch Ridge in the Catalina Mountains.

For the most part, I stopped working for the last year, but I need to get back to it soon. I have daytime caregivers, and that helps a lot, but it’s the intense level of personal care and especially the challenges of the night that are causing me to make this decision.

We’ve been grateful for our army of medical professionals and our great friends and family. I’m not sure what 2015 will look like, but hopefully Richard will thrive in his new setting. And for myself, I know that consulting is far easier than caregiving.

This isn’t a very nice Merry Christmas Eve message, but I wanted you all to know at the same time. We so appreciate all your love, support, and prayers.

Much love to you all. Ava (Sue)

He was kicked out three weeks later. He became agitated, and they didn’t give him his clonazepam fast enough. He hurt his neighbor’s wife accidentally, and it escalated from there. They called the police, and Richard was restrained and sent to the emergency room. It was awful. When I met him at the hospital, he was screaming. It was devastating and broke my heart. He calmed down when he saw me and finally got the clonazepam. But his new facility wouldn’t take him back.

He was home with me for ten long days, including the time that his mother and brother were visiting for her ninety-third birthday. It was hell. We couldn’t do much because Richard was still traumatized. And it rained a lot—good for the desert but not for out-of- town guests.

As you can imagine, Margaret was not happy about our traumatic adventure. She was a wonderful advocate for us and jumped to action to find a new place. Thanks again, Margaret.


March 2015

On February 5, 2015, Richard moved to Via Elegante, a much smaller and more homelike place. It has only ten rooms and ten residents, with two caregivers during the day and one at night. But he needs a private caregiver from 9:00 a.m. to 7:00 p.m. to watch over him and keep him active and out of trouble. This costs thousands of dollars every month. Plus, there is his work with Katherine, who helps tremendously, and weekly lymphatic massages with Susan. And just this Wednesday, we added acupuncture with Maryanne. She is very zen and great, but that’s another cost. I think about Richard all the time and pray for him to be calm and happy. Sometimes he is happy. But not very much. Me either.

We’ve been blessed with a lot of guests. My brother and sister and families. My mom and dad. Friends Jeanne, Sue and Pat, Chuck and Lynn. Many people love us. I’m grateful for that.

Charming Richard is making friends with some of his fellow residents. Some aren’t too amused when he walks into their room and takes a rest on their bed, but in general he is well liked. Another resident, John, has taken special interest in Richard. One night, after his private caregiver left for the night, Richard decided it was time for a stroll. According to John, he was minding his own business watching TV in his room, about to change channels, when he felt his wheelchair start to move. It was Richard, who had decided that John should go for a stroll too. They were spotted in action by the night caregiver as he made his rounds. John loved telling me the story the next day. He clearly enjoyed the adventure.


19 May 2015

As I read all this, I’m shocked at all that has happened in the last years. It’s so fast and so terrible. I wouldn’t wish this on the worst person on earth.

I went to our friend Ric’s wedding in Palm Springs last weekend. It was so great to see him, and it’s such a happy time for him. But I had mixed emotions. It was the first time I had traveled to Palm Springs on my own and the first time I stayed at the Parker without Richard. He loved that hotel. I’m not used to being on my own so much. But it’s been coming on for a long time. I better get used to it.


26 May 2015

It was five years ago today that Richard was diagnosed with Parkinson’s. I would have never guessed what would be in store for us. When we heard the news, I thought, So what? His hand will shake a little bit. But Richard’s dementia was something we never expected, and we were not warned about at all. It wasn’t even mentioned. The first year wasn’t too bad. We tried so many things, and they have definitely helped. But it’s been a very rough ride.


You will find my book Parkinson’s: A Love Story with Dementia for Dessert 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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