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.

A Reply to the Reply

B,

Hi. Thanks for the speedy reply. I am not really depressed or anxious so at least for now do not feel the need for drugs, although not opposed. I do get down time, have a wonderful therapist that I spend time with every week, and have many supportive friends in the area. I am sleeping well, Gregory is not wandering or violent or angry and knows me and our home and our family and friends (even though he might not be able to call them by name.) He is happy and contented and often tells me so.

The problem is trying to keep some sense of normalcy around here when I never know how he will respond or what he will remember or how much he will understand. For example, I can lay out his clothes, no problem, but then he gets more out of the closet, doesn't know how to put them on, or forgets some combination of them. Even when he comes to me for help, short of sitting him down "old people's home style" and dressing him, he cannot follow simple directions, or pointing, or demonstrating. So helping is NO help. That is really what frustrates me. 

Also, I am learning to follow that he does not always mean what he says, like when I ask "Are your pockets filled?" (wallet, keys, etc) and he says NO but they are. Or I'll tell him to go to the bathroom right before we are leaving and he will say OK but if I don't see him do it, chances are he doesn't and then as we are walking out the door he'll say, "Oh I need to go to the bathroom." 

Honestly don't know what I would do with a companion here 6 days a week. Maybe if we had a larger place, they could be getting dressed while I was in my office or whatever. But it is an intimate condo. When the companions are here I will make a play date with friends, or go shopping, or just be somewhere by myself and work on my poetry at the local Starbucks, or go out to lunch, or go on an adventure. I have a massage once or twice a month. A few times when the weather was still nice, G and the companion would go out and I would stay home by myself which was nice. 

It is the day to day that seems to make me nuts. Like asking him to fill the water pitcher before dinner and sometimes he can do it and other times he cannot. If I try to help, that only complicates and confuses him further so I just hold back and let him struggle, which is very difficult for me and him. I often tell him, "It is a question of feel bad now or feel bad later." 

Instead of accepting it gracefully and calmly I find anger and "hate" in my heart and I know it shows in my voice and gestures. Sometimes he will say something which uses the best words he can get out but it will be insulting or demeaning. I still react to the words used instead of the hidden intent. Even though I am becomming more and more aware of the fact that he can use any words is a blessing and I don't always reinterpret or translate them into a positive, understanding statement before my emotions kick in and I get angry with him and have hurt feelings.

In summary, what is really getting to me is that in the day to day functioning of our (my) live, NOTHING IS WHAT IT SEEMS!

P.S. I am using these correspondences on my blog because I feel they are valuable to my readers. Names are changed to protect the innocent:-)

Fondly,

Michael

P.P.S.S. We are going to Battle Creed to visit G's family this weekend. I'll send them your love.