20 March 2013
It’s the first day of spring already. Richard has been having a bad week, feeling poorly, and having difficulty accomplishing tasks. I really need to write in my journal more. This could be a good record of his situation. We’re going to Dr. Ramsey, a naturopath in Scottsdale next week, and I pray that will help. We got our medical records from Dr. Sullivan in preparation, and the first page includes my comment: “I want my husband back.” Well, he’s not coming back. That makes me cry and feel very sad. I love him so much, and that won’t change, but our lives have been changed forever.
I’m working to finish my book, and I have to be very serious about other ways to make money that don’t take me away from home for long. Richard is totally dependent on others to make appointments for him and pay his bills.
I was afraid for him to drive himself to his golf lesson today. Sometimes he gets lost and goes the wrong way. Golf is so important to Richard, and he’s really good at it. I’m not sure how much longer that will be true, though. Giving up golf will make him sad. Another loss in a long series of losses.
His communication is very obtuse. It’s a guessing game to understand the content and purpose of what he says. No one told us that the dementia would happen, and no one seems to be able or willing to tell us what to expect. Or maybe I’m just not able to listen.
24 March 2013
Richard’s new drug, Exelon, made him so sick today. He was very wobbly and shaky, with an upset stomach so bad he vomited. We had tickets to Festival en el Barrio today, but that is not going to happen. I really like that outdoor festival, and this is the last year that we could walk from our house. I feel sad that we can’t go—particularly as I think this is going to happen to us more and more and more and more.
He’s going to stop the Exelon, which is crap for Richard and the only pharmaceutical choice for saving his brain. This disease sucks.
16 April 2013
We spent the week last week at Dr. Ramsey’s clinic, the Center for Natural Healing, with four days of hyperbaric oxygen therapy (HBOT) and glutathione intravenous treatments. I was very hopeful—praying—for a miraculous recovery, and Richard’s peripheral neuropathy did get better. His communication was better, and his energy was higher. But not long after we left, his communication skills declined to their previous level.
Yesterday, he drove himself to the massage therapist, to a building where he had been many times before and got lost both on the way there and on the way home. This is scary. I have to say that my hopes are lower, and I know that this is a long-term game. I need to be all that I can be and find a new way of making money. I need to have the best energy and as disciplined a focus as possible to support our efforts.
We got a new book that Dr. Ramsey uses called You Can Heal Yourself. I’m going to read it and learn everything I can. Maybe I’m part of the problem.
16 April 2014
Coincidentally, it’s been a year to the day since I wrote anything here. And today is a very difficult day. It’s the day I realized that one day I could be part of an assisted suicide. There will be a point in the future, maybe not so far away, when Richard won’t be able to take it anymore.
I worry all the time about being able to make enough money and having enough time to work. Assisting Richard is now almost a full-time job.
But let’s recap what happened over the last year.
We moved last May to a condo that is ‘lock and leave’ and much less expensive than anywhere else we’ve ever lived. But it has good bones and a good view, and we like it here. Our house on S. Ninth Avenue had an open floor plan, but this has lots of rooms and a long hallway. Bad idea. Richard gets lost in our new house every day. We’re planning to blast out the kitchen wall and make an open floor plan in the front of the house. That will help in the front of the house, but it won’t help with the hallway and the too- many doors.
I started work on my book Mission Critical Meetings: 81 Practical Facilitation Techniques over a year ago, and it’s now in the final phases before being published. I’m blogging the techniques. These are small steps to making a living without being on the road.
I took a consulting job in Oklahoma City last July, and Richard insisted that he could stay home alone. It went well for one day. Then he started having terrible hallucinations. Not the nice 1960s kind, either. He got spooked and went outside, where he thought it was safer. Mind you, it’s really hot in Tucson in July. Our kind neighbors, Allen and Teresa, rescued him and brought him inside. He was too scared of the “bad boys” in the house, but they assured him they were gone. They prepared a frozen pizza for him, which he immediately dropped upside down on the carpet. They made him another one and got him to drink more water. Thankfully I was flying home that night. When I got home, he was on the lookout from the back terrace. I was so grateful he was there and not running away from the bad boys again. God, that sucked. I wasn’t happy about pizza all over the carpet, but that was the least of my worries.
The next week, Richard’s brother, Jim, came to the rescue, jumping on a plane from Vancouver so I could keep working. I am so grateful. I got a message from my next-door neighbor when I got off the plane in Dallas saying that Richard was out on the front terrace, yelling at people who weren’t there. It was still early, and I called to wake Jim up; he immediately went outside, but Richard was inconsolable. It wasn’t until Jim started to cry that Richard was able to change his perspective to focus on Jim instead of the imaginary enemies. This is really hard for Jim too—seeing his little brother with so much stress and fear.
After Jim left, I got our painter, Paul, to stay with him during the day, but Richard was on his own at night. Disaster. One night he was frightened by bad boys in the house again and drove the car to a hotel that was really a dorm. These bad boys were especially big and tough and had tattoos on their teeth. The UA campus police got involved, and luckily I was able to reach Paul who came to get him, or else he would have spent the night in a hospital or jail.
Richard doesn’t drive anymore, and I was impressed that he could even start our new car on his own. It’s a Prius. Our Lexus was totaled in a car accident. Not our fault, but another trauma.
LSVT Big and Loud (excellent exercise programs for Parkinson’s), lymphatic massages, glutathione drips, and another therapist, Christina Romano, are new additions. Christina has been an enormous help. She has helped him manage his fears in general and his hallucinations in particular.
I’m looking for strength. Our meditations are very helpful. My favorite centering thoughts: I am open to the presence of miracles. I choose abundance.
I feel that we should take our safari for my sixtieth birthday in 2017, before I’m sixty. Just in case.
21 June 2014
What a crazy two months. Richard’s condition took a turn for the worse. He was really out of it when our friend Andrea came for the weekend of May 10. The next week, he was incontinent (a delightful Parkinson’s side effect) and peed in the bed twice in his sleep, once standing up to pee on the bed, and another time he peed on a bunch of clean clothes that he pulled off the drying rack. He then had to wear Depends 24/7 and needed complete help showering and getting onto and off the toilet. I have to wipe him. He shit on the floor once and in the shower twice and had terrible diarrhea in his Depends once because he couldn’t find the bathroom in time. He went to the utility room instead and got stuck. F’ing long hallway with five doors. That’s four doors too many. Now, constipation has become a real problem and is starting to take over our lives. (You guessed it, yet another one of Parkinson’s many gifts.)
We had to cancel appointments with friends at the last minute several times starting in mid-May. He also refused to get into the HBOT chamber or have a massage with Shannon, even though we were already in her massage room.
On May 25, he got spooked in the parking lot of the Safeway and refused to get in the car with me. He called for help to real and imaginary people and ran away from me with a cart. A kind man came to my rescue near the gas station, and I had to call the police because Richard was completely unmanageable. The police drove him home, as Richard refused to get in the car with me, and then he chose to go to the emergency room instead of staying home. He ended up staying in the hospital for two nights for surveillance and also having a twenty-four-hour-long EEG.
He took Seroquel for awhile; that diminished para- noid delusions, and his hallucinations were much more controlled, but his Parkinsonian symptoms increased so we had to stop. Rats.
He talks of death and suicide constantly and requires nonstop supervision. We hired a caregiver, Liz, to help me, and she started on May 28. She’s been a huge help.
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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