I tried to find out what differences there are between the two of me. She never really said. Last night was the sort of night that usually begins the hallucination days. She was in need of help a number of times. It was not a night when she was up every few minutes with a new hallucination, but we were up more than once per hour. I expect more intense and frequent hallucinations tonight since they have been so strong today.
I remembered the part about sleeping when she is sleeping during the day after a difficult night. She never napped today. Hospice Aide Sonya said that Mary Ann kept getting up as she was trying to give her her shower this morning. Sonya finally just finished quickly since it was not safe while Mary Ann was so anxious (Sonya’s word).
Mary Ann had gotten up very early, as usually happens when the dementia is firing up. I was surprised that she stayed seated while I got my shower. She ate three normal meals today. Only for very short periods of time did she put her head down. Almost the entire day, she was in pop up mode, demanding my remaining only a few feet away at all times. Once when the phone rang, she popped up and ended up on the floor on top of the rolling table that is in front of her chair. As always, she did not hurt herself. I had to hang up and phone back later.
Finally in mid-afternoon, I was able to get her into the car so that I could get coffee and then get ice cream. She is actually safest when seat belted in the car. That way she can’t pop up, fall and hurt herself. She stayed in the car during our stops. This time I got her dish of ice cream (frozen custard) at G’s, fed it to her, and then went back to get mine. I can’t help her and eat ice cream at the same time.
She was talking lots to people that she saw during the day, none of whom were actually there. I left the room for a moment and she went to the sliding glass door to let in the dog we don’t have. She quietly asked if I didn’t want to go out on the deck and talk with Daughter Lisa, whom she said was out there. Lisa is in Kentucky where she lives with her family. Once when I had given her a lemon bar, after the first bite she said I was trying to trick her. Then she said something about my going to or coming back from London. While I have no idea how the Lemon Bar and London were associated, this time there was an explanation for London coming into her mind. Right at that moment on television a character on NCIS was talking about going to London.
Mary Ann finally decided to lie down right after supper. I am so grateful to have a moment’s relief from jumping up and grabbing her gait belt as she went looking for one thing or another.
I got Mary Ann up to change into her bed clothes and take her nighttime pills. I am going to try to get to bed early tonight in hopes that she will sleep a while before the night time hallucinations get going. Most times any hopes such as those don’t materialize. We will see how it goes. She already is appearing restless.
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I am expecting a worse night tonight than last night. My hope is that she will nap tomorrow so that I can get some sleep then.
May 22, 2010 at 10:14 am
Dear Pr. Pete,
If this comes through twice I apologize, I lost the firt conversation. My heart is saddened for you and Mary Ann. I can only imagine what you are challenged with on a daiy basis. With studying gerontoloy in school the different types of dementia were over-whelming. I hope you have been through support groups where you can talk to others who are exeriencing the same things you are. I know God is your largest listener and guides you through each minute of you day. No one except for our God knows Mary Ann’s destiny in time, but I pray you know it is okay to say “goodbye” to her now, knowing that she will not understand why you are telling her this, but it will help you with you emotions and deepest feelings when she actually does not know anyone. I understand your days and nights are very long, no rest, no personal time, but when the time comes that do are able to have these moments you will not want them. May our God bless you and Mary Ann and keep you both in the palm of His hand holding you close to His heart. Gary and I send our love and prayers to both of you. God’s Peace
May 23, 2010 at 3:59 pm
Kathy,
Thanks for your comments and the prayers you and Gary are offering on our behalf.
One sort of odd characteristic of this dementia (a form of Lewy Body Dementia) is that very often, it does not progress in a steady fashion, and loss of memory is not central to it. I grieve the loss of aspects of Mary Ann’s personality, and then they return — then they are gone again — then they return. It sort of numbs the senses. Those vacillations complicate the grieving process, but every once in a while, it hits me that we she has progressed farther in the disease process. Yes, you are right, I do not long for that time when I no longer have her with me. If I do outlive her, I may very well long for some the things that drive me crazy now!
Thanks again.
Pr. Pete
May 25, 2010 at 10:07 pm
Pr. Pete
Although Mary Ann is not aware of her surrounding and her thinking is so rambling in her mind, she has never stopped loving you, and she probably wishes that she could tell you and show you. When you feel a breeze on your face believe that it is God passing Mary Ann’s love to you. Without me telling you something you already know, Parkinson’s is a form of dementia. If you could or if you have already seen a scan of her brain, you would see how her brain is not compact, but it has large gaps, which is the dementia, and the larger the gaps, the worse the demintia is. I can only imagine the pain Mary Ann is in when her muscles involuntary tighten up, I dislike the feeling when my body jerks when the involuntary muscles decides to do their thing. Many people has or is going through the same things as you are, but to us that know you and Mary Ann, we feel as a part of your family and our hearts grieve for you and Mary Ann. It is hard to see a beautiful couple suffer with such a devastating illness. I am not going to preach to the preacher, but if you do not start getting some rest, you are not going to be able to take of your beautiful wife, because you are going to be too ill to help her, then the promise you made to her, you will not be able to keep. A suggestion only, if you could get someone to take care of Mary Ann for a day and night, you could go and get a hotel room and do nothing but sleep, and get that much needed sleep that you long for. Please take care of yourself, go for your coffee that you so enjoy.
Prayers and Peace, Kathy and Gary