Celebrating from Afar

Today is Gregory's birthday. He is a Fourth of July Baby. We celebrate him with days off from work, picnics, fireworks, and birthday cake. We celebrate him no less today than yesterday, just differently.

I baked two pans of Brownies with walnuts yesterday and will put them in the staff office today, one for each shift, in honor of his birthday.

Yesterday, with Gregory's help (or at least he watched as I worked and explained) I decorated the dining room by adding small American flags to the flower vases on each table. Manny poked one flag in the back of Gregory's chair.

I bought three mini-bund cakes; one for Gregory- chocolate chocolate chip, one for me - lemon, and one for Manny - marble choclate. We will put a candle in Gregory's, sing the birthday song (he usually sings along,) and see if he will blow it out (if not we will help.) Then we will pig out on the cakes. Maybe we'll cut them into thirds and share the flavors! We will add boxed milk (from Gregory's refrigerator) to the mix.

I will tell Gregory that I love him at least a dozen times. He may or may not respond.

"Gregory?"
"What?"
"I love you!"
"I know" or "OK" or "Yes" or "I love you" or a laugh or nothing
"You make me very happy!"
"I know" or "OK" or a laugh or nothing.

He may or may not give me a kiss when asked. Sometimes he will lean in towards me and give me the kiss. If he doesn't, I will lean in toward him, I go in carefully because recently my glasses were accidentally broken when he push me away.

One time he leaned in and gave me a kiss on the lips while putting his arm around me. He finished the kiss backing off a little, looked at me me and asked, "More?" and we leaned in for a second kiss. He backed off again and asked "Again?" and we leaned back in for a third kiss. It was magic. Another Momentary Monumental Magical Miracle!

Sometimes when we go through this routine I whisper and he whispers back! So whatever his response, the message gets delivered up to a dozen times depending on the length of our visit or what activities we are pursuing.

So it will be different, but none-the-less important to both Gregory and me and Manny, as we celebrate his July 4th birthday today.

Here are some photographs of the occasion:

Here is a video of the Birthday Song.

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.

Neurons

Now think about what it must be like when those connections and associations begin to break down. Language no longer works, thoughts exist but expressing them is not possible, memories continue but you can no longer access them, routine is no longer possible. Life goes on but you are slowly not recognizing most of it any more.

A Tough One

This is going to be a tough one to write. My life is dramatically changing. Even as we speak I do not know for sure how to proceed. I do have alternatives available to me but all of them involve difficult choices.

Mexico was difficult for both Gregory and me. Gregory because he was disoriented most of the time. Me because I was "on duty" 24/7. Simple things like getting dressed or undressed caused him difficulties. My support often caused more confusion on his part. Did I hear you say HELPLESS? Yes, both of us. He helpless with what to do next. Me helpless with how to help.

While I am not ready to admit it, I think that Mexico might have been our last major trip. I fantasize about Europe (Paris, Italy, The Netherlands, England, Scotland.) I dream about a driving trip through the eastern U.S. to see the sights and to visit family and friends. A river cruse down one of the many great rivers of the world could be exciting. We watch Rick Steves and other travel programs and imagine. But I am not yet ready to admit that these might only be fantasies.

Gregory's re-entry after Mexico has been very slow. Re-entry you would think should be easier since it is back at home and routine and the familiar. But for some reason it usually is worse than when we were away. This time it is taking longer and many of the previous cognitive and self-help skills have not returned.

About a week or so ago, I felt like my life as I know it had changed. Gregory went to return the condo grocery cart to the lobby after we had brought the groceries to our unit. He has been doing this for the last five years since we moved in. Somehow this time he ended up on the 9th floor and didn't think to call me for help. He religiously carries his cell phone but I begin to suspect that he doesn't know how to use to make an outgoing call. He didn't know how to get back on the elevator to go to the lobby. I suspect that he got on the elevator on our floor and by the time he figured out which button to push, the elevator recording began "yelling" at him to select a floor and then the elevator just took off to someone else who was calling for it. He got off when it next stopped.

I called him after I thought he had been gone too long, found out where he was and went to fetch him. I gently asked if he could tell me what happened and of course he couldn't. I didn't press it but I cannot explain the weight I felt on my proverbial shoulders. I felt like our life would never be the same. Yes I can take the cart back but that was one of the last shreds of assistance he was able to give me. And the fact that he "got lost" in the building freaked me. Since then I have been afraid to let him and he hasn't asked to go on his usual long walks. He doesn't go swimming anymore. He sits and stares more and more. He "shadows" me when I am working around the unit or at my computer. He gets bored because he doesn't have anything to do but on the other hand, he can't do much.

I guess I will begin to go on walks with him now that the weather is nice and will take him swimming. But that means my life is on hold. I have begun the process of trying to find him a "companion" who can relieve me some of the time but that takes advance planning, scheduling, money, trusting another person, etc. It is a necessary thing to do but one that I am not ready for!

Since his getting lost, things seemed to be running a little smoother. I was able to get away for an hour to go to my Weight Watchers meeting last week. This week it didn't work. He wanted to sleep in. I made sure he knew where I was going and that I would be back in an hour or so. I left at 9:00 and when I got back at 10:15 or so he was still in bed. He asked, "Why have you been gone so long?" I asked "Why are you still in bed?" He replied, "I was afraid."

I had assumed that he would get up when ready and begin his breakfast. He usually starts off with a piece of toast or a muffin. I left his "placemat aide" (which pictures his breakfast choices) out for Tuesday breakfast. The assumptions I can make continue to be fewer and fewer and change from day to day.

So how can I go to my WW meetings? How can I go to Michael's Museum for a morning? How will I ever be able to be in an Opera again? How can I leave him in bed "being afraid?" I guess I am waiting for the aftershock of these changes to settle down so I can begin to investigate what options are available to me/us. Hopefully I will find the companion to be here but honestly, I am not ready for that level of his being dependent on me. What choice do I have?

A New Observation

THE SITUATION:
In dealing with the "day-to-day" of dealing with Gregory as he deals with his "good and bad days," I have made a new observation or maybe rediscovered a previous observation or some combination there-of. (This sentence, by the way, is an example of the dense direction my writing sometimes takes which is complex in a way that forces the reader to slow down and really focus on its meaning. Maybe this is what Gregory has to go through with all things now-a-days?)

THE BACKGROUND: Previously I have talked about how sometimes helping Gregory is a question of more or less. My intervening, or suggesting, or helping, or taking over is a question of making the situation more painful or less painful. More insulting or less insulting. More difficult or less difficult. But none-the-less painful, insulting, and/or difficult. Follow that?

THE SETTING:
Here we are now at the beginning of Fall, 2011. You and I are making subtle changes easily to adjust for the change in weather, not so for Gregory. What he might wear on any day takes finding or asking for the weather forecast, deciding how that might apply to what type of clothing to wear, selecting that clothing, getting into the clothing, and then deciding what type of jacket, if any, to put on before going for his walk. He is not always successful at doing all this himself so sometimes he will ask for help, other times I will offer help, and still other times he returns to the apartment three times until he gets it right. On the rare day, he is totally on target but a day or a week later, the season continues on its way and needs change and Gregory is unable.

THE OBSERVATION:
I realize that sometimes (notice SOMETIMES is used a lot if only because it is not NEVER and not USUALLY) when I try to help, I actually cause more problems for both of us. I distract him, inadvertently cause more confusion, or he doesn't understand the words I am using, or whatever. (I think WHATEVER might be my new mantra!) I find myself "jumping in" too soon to try to help Gregory avoid frustration but then I cause both of us to become frustrated. It is very difficult for me to watch him struggle through an activity or decision so I "jump in." Is giving him "space" and "time" to work through a situation "more difficult" or "less difficult" for me? I am beginning to think that I will be and we both will be better off by my slowing down before helping. Another approach would be to announce, "I'll be here if you need me, just ask." I could also sit quietly after letting him know, "I'll wait quietly until you need me." If the situation does not allow me to give him time and space, I need to keep my voice even, my temper in check as I say something like, "Here, let me do that. I don't mind."

THE EXAMPLE:
Now that the days are cooler, Gregory needs to put on something warmer when he gets up for his morning breakfast preparation and sitting at his computer to do the daily e-mails and news. We switched to his heavier work out pants and shirt which we call his "grays." But he has been having problems assembling his outfit the night before so it will be ready in the morning in the warm bathroom. He has not been able to get past putting the "grays" in the bathroom to the need for underpants, undershirt, and sox. Often he does not recognize those words or is unable to say them. I designed a sign with a picture of each item. To me it made sense that this would make it easier for him to remember everything he needed. It didn't. I explained. He struggled. I explained again. I didn't get angry but I know Gregory senses my frustration. That was when the observation came that sometimes my trying to help causes more harm than help. Sure enough last night he got everything he needed together and into the bathroom without my help or the sign's.

THE LESSON LEARNED (for how long?):
Best to wait until he asks for help or if his struggling goes on for too long or if his frustration level gets too high. This is while the activity is at the "SOMETIMES" level. The need for my constant awareness and monitoring of the ongoing interactions and activities our life is the difficult part. At a certain point in time, when the "NEVER" or "USUALLY" level arrives, I will take over and do it for him every night, change expectations and routine. Down the road, I will let him try it by himself again and if he is unsuccessful permanently be in charge of that function.

FINALLY: I will try anyway to do everything I can (for example the sign) that might possibly help and if it doesn't work I will do something else, I will just try not to beat myself  up for trying.

Tonight

Tonight he forgot how to put body lotion onto his hand. It hovered above the pump, retreated, approached, retreated, approached. Finally he figured it out.

After reading for awhile, he put his book down on the night table, picked up the case for his reading glasses, opened it, closed it, then realized he still had his reading glasses in his hand. He corrected the situation in silence. Unnoticed I watched.

He fluffed his pillow, laid down, said goodnight to the plants on the bookcase, and turned off the lamp. Some solace in that I guess.