There is no reason to think the hallucinations won’t be back. She is still sleeping all night and most of the day. I expected them to fire up last night. They didn’t. I expect them to fire up tonight. I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.
She got up pretty early, was up for about an hour and a half this morning, and went back to bed. While she was up, she took pills and ate a good breakfast. She was calm and lucid. She says very little when she is up.
She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch. Again, she was calm and lucid. She lay down after an hour or so. As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.
At this moment it is a little before 7pm and she is still sleeping. I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch. There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much. The color is okay. I will certainly keep an eye on that. If I get concerned, I will call Hospice to talk with the nurse.
Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times. I have done nothing much today, just waiting and watching. I have the monitor on so that whenever I am back here at the computer I can see if she is stirring. Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.
The only progress today is that I got a phone call in response to the fax that I sent. The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia). I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment. I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago. She said that whatever Psychiatrist we find should do that. I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications. These are a few hundred folks who have been dealing with this disease, some for very many years. Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s. Among them, the use of various medications including Seroquel works for some and not others. There is no consistent pattern of treatments.
…She got up again at about 7:30pm to go to the bathroom and change into her pajamas. Then she returned to bed. I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.
…I got her up to take pills at about 9:15pm. She wanted to eat something and chose a single serving container of applesauce. She lay back down as soon as she was done with the pills and the applesauce.
I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate). The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences. That is a combination I especially appreciate. It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard. The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.
I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees. It is surprising just how much of the landscape on the moon becomes visible with good binoculars. With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.
Mary Ann seems to be sleeping, but she is doing the jerking that I have seen more often lately. I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.
I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest. I would be happy for them to take a long vacation and leave Mary Ann alone for a while.
If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,” click on the name of a post and you will find a box at the end of that article in which you can write a comment. Clicking on the title of the post you are reading will accomplish the same thing. Comments are appreciated.
May 28, 2010 at 2:17 pm
I’m just getting used to Face Book since I retired last week. I appreciate your comments about how things are going with Maryann so much. It helps us to understand what you and she are dealing with. May God bless your days with her, and grant you peace so that you have time to enrich your spirit while you are giving her much needed care. We will keep you in our prayers.