Impermanence

Things are changing again. For the last week or two I have been weighing in on the heavier side of sad when compared to joy.

When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.

You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.

When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.

Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.

When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.

When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.

While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.

Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.

In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.

It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.

When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.

Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)

Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.

So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.

The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.

I will keep you informed.

Behavior Changes Due To Medication Change

Lots of posts today as it was a very active day for Gregory.

First his helper Manny called in sick so I spent all day and evening with him, then Pat dropped in for a visit, and then Jan came and spent dinner with us.

Also, less than a week ago, the doctor at Lieberman changed one of Gregory's medications. Aricept, the most well known of the Alzheimer's drugs, can cause stomach problems.

Gregory had been having some digestive problems so they changed from the Aricept to an Excelon Patch. Because the patch is absorbed through the skin into the blood stream, stomach problems are avoided.

We were told to be on the lookout for unexpected changes because of the switch in medications. I didn't expect to see happen what has been happening.

Gregory is more alert, more talkative (although not more coherent,) more animated, and more present (although still unable to communicate.)

One problem with this is that he has been more talkative but still has problems with word use and therefore has been a little more frustrated. So we listen to him, agree, and nod our heads affirmatively. This seems to comfort him.

Also, he seems to be "thinking" more and trying to express what he is thinking, but again is unable to do so and this also frustrates him. I express it this way: It is as if he gets a complete visual image of something he wants to share but as he is struggling to find the words to express the image which he is unable to find, the image slowly fades away.

So he has been alternating between very happy, smily, laughing, joking around and crying, being frustrated, and being mildly angry.

Will be interesting to see what tomorrow brings.