December 2015

I live in a condo on the second floor, and the woman below me died of Parkinson’s back in July. Mary lived there with live-in caregivers. I could tell she was an elegant woman with style. But it’s hard to be elegant and with style when you have advanced Parkinson’s. You drool and can’t sit up straight.

She couldn’t walk and was always in a wheelchair. Once, when Richard was still living at home, we were outside and said hello, as we often did. I told her that Richard had Parkinson’s too. She looked at him with sadness in her eyes, as if to say she was sorry that his life would end up like hers. She couldn’t talk at all, but she didn’t have to. I knew what she was thinking. I think Richard did too.

One day in October, it occurred to me that if I bought that condo for Richard, we could feel more like a family again. I could not not do it. I thought it would be cost-neutral, but that was self deception so I didn’t get scared away from the idea. I found Mary’s son and bought the condo. It was already close to move-in ready, but I had it renovated to open up the kitchen so care- givers could see Richard in the living room when they were in the kitchen. It has the exact same floor plan as our condo upstairs, but with beautiful hardwood floors and handicap-accessible bathrooms and showers. We painted it with warm and calming colors.

You can’t see the mountains from the ground floor, but it’s got great light and views of our courtyard—good for spying on the neighbors. I had reflective window film put on our windows, so they couldn’t spy back.

Richard moved in on December 15, 2015. His assisted-living place threw him a party, and he was really moved. When you are in assisted living, all the other residents and their families and caregivers become your family. You’re all in it together to make what is sucky less sucky. Sometimes it’s even fun. Not that often, but it’s possible. For sure you care about everyone there.

Richard loves his new space. I told him he was in charge of the ground floor, and I was in charge of the second floor. We have two twelve-hour caregiver shifts—7:00 a.m.–7:00 p.m., and 7:00 p.m.–7:00 a.m. Someone is awake with him 24/7.

And I love it too. It is so much easier to spend time with Richard. I can stop by between meetings and several times a day instead of having to plan a block of time sometime during the day. Visiting at night when he was in assisted living was a waste of time—Richard usually went to sleep by seven. And his cognition and energy are usually worse as the day goes on.

We put Richard’s bedroom in the quietest room, in the middle of the hallway, directly across from the best handicap bathroom. It is cozier, so Richard feels safer than he would have in the master bedroom at the end of the hall. That room has sliding glass doors to the back patio, and any sound from the nearby drive- way would have left him in fear of intruders. Putting his music room and guest room at the end of the long hall will make the house easier for Richard to navigate. Ha!

I moved a lot more of our art (we have a lot of art) and some furniture downstairs, more than he was able to have in assisted living. It felt like home—or as close to home as we were going to get. Richard liked hav- ing more of our stuff around. These photographs were taken by our dear friend and photographer Daniel Moret when we on a holiday together in Paris many years ago. They are “very important photographs,” according to Richard, and I agree. He looks at them often.

The house always smells good. A diffuser with lavender in the bedroom to help Richard relax and sleep. The diffuser in the living room usually has peppermint to help keep us focused and alert. And there’s sage nearby to help with anxiety and shoo out the bad guys. Open the door, out you go. “Only the divine are welcome; all non-divine must leave now and forever.” Cate taught us to say that. She’s a healer and often clears our house of negative energy that Richard feels acutely and me not at all. I swear dementia gives you powers that the rest of us don’t have. “Sleep with the angels, Richard.” I say that to you every night.

The caregivers feed us great food. This is awesome. Of course, I have to buy the food, but for a person who hates to cook, this is a wonderful gift. The caregivers just text me to say food is on the table, and I’ll come down. I love that.

I spend as much time as I can downstairs. Richard comes upstairs too, but that involves stairs, so it has to be a good day for that to happen. Stairs require a lot of concentration and coordination. Richard has jobs to do, like taking out the garbage every day. It’s important to have a purpose and responsibilities, no matter who you are. Of course, we go with him when he is outside. Better to have two people with him, one caregiver and me. That way, if he gets spooked and starts to run or fight against us, we have a better chance of managing him. Bad boys can show up anywhere and at any time.


This is a chapter from my book Parkinson’s: A Love Story with Dementia for Dessert.  You may find it on Amazon.  Your feedback and reviews are most welcome.

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