I felt pretty low this morning. She was up some during the night, but not as bad as some nights. Mary Ann’s dementia was pretty strong. Her words were still pretty much unintelligible. She insisted on getting up very early. I was not sure if she would ever calm down. She was hallucinating and grumpy. I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.
She finally did become more subdued, putting her head on the table as she sat. She ended up in bed and was only up for a small breakfast and a very small lunch. At lunch I had to hold her head up to get any food in her mouth. Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream. Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup. She then pretty much fainted and I took her back to bed.
She has had no supper either. Once in the afternoon she did get up for a very short time. She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed. She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.
I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.
It is easy to feel very helpless in the face of things over which we have no control. Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.
What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something. Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results. Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats. I am still bone tired. I don’t know what that means exactly, but it sounds as I feel.
As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control. It may only be an illusion, but if it is, it is a helpful illusion.
At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital. Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann. The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.
The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much. While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.
The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation. She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.
The Hospice Social Worker reviewed the residential options and will do more checking on those. She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia. She mentioned one not far that a Social Worker friend had declared to be wonderful. A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.
I also sent the fax to the Neurologist who declined to continue to treat the hallucinations. I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long. Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.
There was one especially interesting sidelight to the day. Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia. It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine. The magazine just goes to enrollees in Northern Illinois (if I understand correctly). When the request came, she was looking for Seniors who did Blogging and had an Illinois connection. Both Mary Ann and I grew up in Northern Illinois (Aurora). I responded, but heard no more.
Yesterday she emailed and today interviewed me on the phone. She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation. It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation. Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way. I have no way to judge the quality of the writing. I just need to write to get this stuff out of my gut.
When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us. All through the day I am thinking about what is happening in terms of how and what I might write about it. I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits. Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us. I realize that sounds very self-serving and ego-centric. It is. I admit it — but it sure helps.
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The Caregiver Calling 