Haunting (Part 2 of 2)

No, not "Haunting" like Freddie Kruger in "Nightmare on Elm Street" or some scary movie like "Psycho" or "Silence of the Lambs." But rather an experience I had the other evening at Lieberman that left a strong image in my mind.

What I want to share "haunts" me because like with so many of my interactions with Gregory, I will never really know the true meaning or many of the significant details. But I can close my eyes and clearly see and feel the experience.

Usually I visit Gregory during the day before - during, or after lunch or the same for dinner. Most often Manny is attending to Gregory as Private Care Helper and he will take a break while Gregory and I visit.

Often our visits have an activity associated with it like me giving Gregory a manicure, or talking about the pictures in one of his books, watching TV, having a piece of fruit of a bite of chocolate, working with a beach ball for exercise, me giving Gregory a massage, or all of us joining in one of the floor's activities or going down to the community room for an all building event.

The other day I arrived at Lieberman at 7:00. Manny had left by 5:30 and Gregory was "parked" in Wing A watching TV with the other residents. He was at the far end of the wing and as I approached I realized his arm and hand was up in the air over his head signaling he saw me, or here I am, not sure which. I waved back and he kept his arm in the air until I reached him.

I had crossed the head of the wing a few minutes earlier on my way to drop some stuff off in Gregory's room and I wonder if he saw me come and go then. I guess I am amazed that he was so aware that he saw me approaching. Usually he is distracted or has a fixed focus on something or another.

Either way, it was a nice welcome and reception for me and was a first. I wonder what was going on in his mind. I wonder at what point he noticed me in Wing A. I wonder if he thought I was not going to come find him. I wonder if he misses me when I am not there or if he even knows that I am not there and brightens up when I am. I wonder if he remembers that I was there after I leave.

Sometimes it is important to me to have a "heart to heart" with Gregory and share what I am feeling or thinking. For example,  I say, "I really miss you so much and wish we could be together more often. I know that neither of us would have wanted it this way but I know that we both also know that you are being well taken care of and are safe. It seems to me that you are happy and content and that makes me feel good. I love you so so much."

I think Gregory hears and understands me and sometimes we cry together, other times we laugh together. Maybe he just senses my sadness or happiness and that is to what he reacts.

"Dayanu," It would have been enough! Lieberman, being a Jewish organization, makes me end this piece saying, "Dayanu, It would have been enough." I do not really need to know what Gregory is thinking, only to see him smile or laugh or cry with me.

The Soul

"Dust to dust!" he enthused. I smiled, rather grimly, and reminded myself to breathe slowly. If you want to feel loving, I coached myself, do something loving. This is basic soul care.

I don't even know what that means - Soul. Traditionally it is believed to be the component of ourselves that survives physical death; a reflection of the Holy, make up of light and breath and silence and love, of everything ancient and of babies about to be born. C.S. Lewis said, "You don't have a soul. You are a should. You have a body." If this is right, we have a purpose, which is to shine, like the moon shining in the sky; or to paraphrase the old bumper sticker: Think globally, shine locally.

Seen in
Grace (Eventually:) thoughts on Faith
By Anne Lamott

The Truth of It

It is difficult for me to talk about all the things that Gregory and I go through. I had to think about what I wanted to say about tonight's experiences, felt a little embarrassed to be talking about them, but decided that in the hopes of sharing everything about our Journey with Alzheimer's I should not hold back.

Gregory forgot to wipe after his bowel movement earlier this evening so his underpants were a mess as was his behind. I started cleaning him up but decided to put him in the shower instead.

He fumbled with turning on the shower so I took over. Once he was in the shower, I pretended to use the toilet, so I could watch to see how much he remembered about taking a shower.

He shampooed his hair and then tried to use the rest of the shampoo on his hands to wash his arm pits, genitals, and behind.

He did not rinse his hair as he continued and got shampoo in his eyes. I told him to rinse. He did.

I asked him to put more soap on his hands to wash but he couldn't remember how to get the soap out of the pump dispenser.

Finally I took off my sleep clothes, got into the shower with him, and took over washing his "privates." I got out to dry myself while he rinsed.

He did not know how to turn of shower but instead turned it to the hottest setting. I intervened.

I gave him his nightly ration of chocolate and began my stretching exercises. I realized why I was angry at him, why I needed to tell him "at this rate diapers are next." Why I had to put into words the things he could not successfully do this evening. Why I had to be abrupt in my helping instead of kind and gentle.

The reasons, I realized, are that I do not want him to have to live  like this. I do not want to live like this. I do not want to accept that he will continue to get worse. I do not want to believe that I cannot make it all right, that I cannot make it all better. I do not want to think about not being able to guess what to do next or what he needs at any given moment.

I don't want any of this, but have no choice. I love this man, or at least who this man was once upon a time. I fear what this man will become. And who I will become.

Meditation

I am taking a class at the Heartwood Center in Evanston with Corinne Peterson.
http://www.corinnepeterson.com/yoga-therapy/ and have been posting any insights I gain during the Sunday sessions. Today was session three.

This session we focused on JOY which interestingly enough I posted about last session as well. Corinne talked us through a way to focus on bringing JOY to the forefront of our thinking when we need it.

So far, through the mindful meditation and awareness of body and breath, I have developed for myself the concept that I exist within the boundaries of my physical body and the rest of the world is outside of my boundaries.

I can fill my boundaries with emotions, beliefs, and thoughts that I want to let in. I can invite the "difficult" in to look at, deal with, come to grips with, but then I can invite it out and close the door behind it.

Just because there are difficulties in my life does not mean that I have to allow them to "fill" me and my "body space" and drain me of happiness and joy.

So when Corinne suggested using color to activate the JOY that exists within, I defined my physical boundary space with a bright golden neon outline. When I want or need to focus on the JOY WITHIN, that is all I have to do is flip on the switch and the neon outline of my physical boundary will glow brightly.

Another realization arrived when I was at the most relaxed point of our meditation, "The mind gets in the way. If one can turn it off and JUST BE, one is probably the closest that one can be to truth and to peace. The rest is noise.

On going into the session, I had intended my "intent" to deal with my anger over interactions with Gregory that "get strange." I did get a message here too. It was brief and to the point. "Don't try to deal with the anger, just replace it with love, and more love!

Arising to Panic

We have gotten used to arising in panic.
Late hours of the night or wee hours of the morning.
"There. Look. What is that?"
"Nothing, you are just dreaming. Nothing to worry about. Go back to sleep."
"Are you sure. Are you sure."
"Yes, everything is OK," stroking his cheek, holding his hand.
We both settle down and fall back to sleep.

In the beginning these events used to disturb me and I could not get back to sleep. Now they have become expected and for some reason that makes them easier with which to deal.

Telling Gregory that "You're only dreaming" is easier and kinder than addressing the fact that he has begun to hallucinate. I am not sure what he is seeing, and to him it is real ... but I can be calm and assure him that everything is under control. He is able to trust me and fall back asleep.

There is the possibility that he wakes and is not able to separate his dream from reality. If this is the case we may not have hallucination but something none-the-less real for him. Again, calm support and comforting does the trick.

More difficult, but still now expected and therefore tolerable, is when he knocks an imaginary something off my sleeping shoulder bringing me fully awake quickly. Sometimes picking something out of my hair is either a service or an hallucination, but either way I react calmly.

To me it is the unexpected and unknown that freaks me out. Once I can rely on something, even if it isn't pretty, I can better deal with it. Once I can begin, at least, to understand what is happening or what might be going on in his mind, I can better deal with it.

A third aspect in better dealing is to not allow myself to worry about the future. I know it will get worse. I know the "rules" and "understandings" will change, but that is tomorrow. Tonight I'll just get back to sleep, holding my honey's hand, and sending him thoughts of love.