There seems to be no end in sight to the constant hallucinating. It continued last night until about 3:30am or so, and fired up again some time in the 6am to 7am range. When she is awake, she demands constant attention since the her mind is driving her this way and that. She is anxious to tell Daughter Lisa about the girls bringing a wagon from the downstairs to help her when she fell. Mary Ann even described the worried look on Ashlyn’s face. They are still at their home ten hours away in Louisville, Kentucky.
As usual, gratefully, she did lay her head on the table and settle there after getting dressed, breakfast and pills — hallucinating all the while. The position she was in looked so uncomfortable. After a time she decided that she did want to go in and lie down.
During her rest time, I finished moving all the firniture out of the way for today’s carpet cleaning. I also managed to get hold of the Neurologist’s office. The call was a little frustrating since the Nurse saw that we had not followed one of the Doctor’s suggestions in the chart from our last visit. She was not aware that in that visit, the Doctor indicated that the suggestion to get a Psychiatric Evaluation of Mary Ann, was only an option if we were not satisfied with Dr. Pahwa’s choice of medications. Since I am very aware that Dr. Pahwa is one of the best Parkinson’s Specialists around, I opted not to try to find someone less knowledgable in the area to suggest other drugs. The other meds for hallucinations are more dangerous and less effective for the kind of dementia Mary Ann has. Dr. Pahwa confirmed that he was only making the suggestion to provide a sort of second opinion.
The Nurse seemed quite frustrated that I had not done what the chart indicated had been one of the suggestion for us. The chart listed the suggestions, but not the result of our conversation at the appointment. She did agree to talk to the Neurologist. Since we were away from the house on account of the carpet cleaning, I missed the return call. Somehow I also missed the call on my cell phone.
I got Mary Ann up to get in the car and head out when the carpet cleaner came. We met former parishioner Jay for lunch at McFarland’s Restaurant, where Mary Ann feels especially secure — and the food is good. There are lots of folks our age and older who frequent the Restaurant.
We had a great conversation. Mary Ann was really struggling to stay alert and functional. Even with my help she wasn’t able to eat very much. We sure seem to have lost a lot of ground. It continues to appear that it is not a temporary decline, but a new location on the ride.
After lunch, we tried to go home since Mary Ann was so tired. The carpet was still too wet for us to go into the house. We went over to the church from which I retired to use the bathroom, since I thought it would be quiet enough that I could take her into the women’s rest room without fear of interruption.
Then I broke down and took her for ice cream to Baskin & Robbins. It was uncomfortable, but I will get over that. The ice cream was good.
The next stop did not go well. I drove to the grocery store. We went in and gathered a number of items. When we were about two thirds of the way done with our list, Mary Ann said she had to go to the bathroom for serious business. They have no family bathrooms, but very active Men’s and Women’s rooms. Since it was major business, I could not just ask someone to take her in.
It would have taken too long to try to check out with what we had before leaving to go home and use our well-equpped bathroom. I took the cart to the Service Desk, told someone there that I would be back for it, and we high-tailed it home. Things went fine there, but afterward, Mary Ann had to lie down and nap. There was no way I could get her back to the store. With the potential for bathroom needs and a store because of construction almost fifteen minutes away, I could not leave her there while I drove back, got the rest of our items, checked out and drove home.
In our world, nothing is easy. Volunteer Coordinator Mary came to our rescue. She has helped with groceries before and offered to help whenever she could. I called her and asked her for help. She immediately offered to pick up the groceries, stopping by the house to get the coupons and the rest of the list. She quickly called back to offer to stay with Mary Ann while I went back and finished shopping if that would work better for me. That is the option I chose. It turned what had felt very frustrating and distressing into a few moments away to in a relaxed way get the task completed. At the store they had been thoughtful enough to put in a cooler the items in the cart that needed to be refrigerated.
When I returned, I thought Mary Ann would still be sleeping, and just need to be changed for bed to complete the night. She wanted to get up for a while. She needed something to eat. All through the time she she was up and then eating she was lacing her reality into the reality visible to me. Since going to bed, she has been hallucinating some. There is not clear evidence yet as to whether this will be a night of sleep or of multiple interruptions by the hallucination/delusions and dreams mixed with reality.
One thing is certain. I need to get to bed soon so that I at lease have a chance of getting some sleep.
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May 13, 2010 at 11:59 pm
Tucking you both into my prayers again tonight. Am so very grateful that I have met you, and that you are finding therapy in sharing this journey that the two of you are taking. I am also grateful for the perspective you offer me…both into your life, and into mine. Godspeed.
May 14, 2010 at 9:29 am
Thanks, Nancy.
May 14, 2010 at 1:29 am
Pastor Pete, I wanted you to know that I’ve been reading your blog very regularly lately and it works out almost every morning when I get up you have just posted something but it is just the beginning of your night. We are not close enough to give any hands on sort of help, but I believe prayer is some of the biggest sort of help we can give… and I have been praying every morning for you all at what seems likes the most difficult point of your day- in the middle of the night. Thank you for sharing your life on this blog- you are an inspiration.
May 14, 2010 at 9:33 am
Thanks, Cara. The prayers helped last night. Mary Ann (and I) finally slept. I was wondering how much longer she could go without a full night’s sleep (me, too). You and Korey really understand the significance and power of long distance prayers. With God, there is no long distance. They are all local calls. Greetings to Kory.
Pr. Pete