Difficult Seder Visit

Yesterday was the first day of passover. Manny had the day off so he could celebrate Good Friday. I had lunch with Gregory and left when he was taken to physical therapy.

I returned to Lieberman at 4:00 to take Gregory down to the Community Seder. After a telephone call, I was excited that Gregory had finally gotten the special wheel chair "Broda" that I had been pushing for and was looking forward to seeing it.

Instead the old, "normal" model had been taken and a new "normal" model had been substituted instead of the "special" model that had been discussed AND the new "normal" one didn't work.

It was impossible to wheel down he hall in any sense of a hoped for direction. I literally kept bouncing off the walls, had to straighten out the chair and push again until it hit the wall again.

Besides my rotator cuffs acting up, and my back a little out making it even more difficult to fight with his new normal chair, I was very disappointed that the correct chair had not been delivered.

I called the person I had been dealing with and INAPPROPRIATELY read her the riot act. This was at least the third chair that had not worked at all, the one that did work was taken back, and the correct one was not delivered!

I usually do not loose my patience, am gentle and calm in my dealings with Lieberman Staff, and am happy and even tempered in their presence. Not this time, but I learned an important lesson the hard way.

My being upset and bawling out my connection on the phone got Gregory upset. By now we had reached the elevator. My call was complete. But Gregory was very upset and loud and acting out, unfortunately against me! I know he was just reacting but since I caused his upset, I guess he was mad at me.

So there I am in the hall, by the elevators, trying to help Gregory calm down to no avail, with the Social Worker trying to help also, with the head nurse a short distance away observing and probably trying to decide what the outcome will be.

Finally I was able to get Gregory calm, not without a few tears of my own, and I decided that "we" were too upset to try to go down to the community Seder so we stayed up and had dinner at the fifth floor dining room.

It was not as fancy, there was no service or concord wine. I was disappointed that we couldn't go to the seder service but also pleased that I could make a turn around decision, regardless of my disappointment, on Gregory's behalf so quickly.

To add to the drama, the dining room was quite unsettled and uncentered this night.

There have been a lot of new residents joining us on the fifth floor and most of them are going through the transition of being there and not wanting to be there. Two men are plotting together on how to escape.

One thinks he is trapped there having arrived as only a visitor, refuses to use his walker, and argues with everyone!

The other is an "A" type personality who thinks he literally owns the place and expects his "employees" to do his bidding. He is in a wheel chair and demands that everyone in his path help him out of the chair. He is mean, demanding, and absolutely unable to be engaged in a rational, deflecting conversation, like, "You need to have some dinner before you leave," or "The wheel chair is to keep you safe and from falling down."

One woman constantly screams for help and another yells that she is dying, having a heart attack, can't breath etc (all of which have been checked by the nurses but are untrue) and another woman is quite distraught but only speaks a language that none of us understand.

I know things will settle down. The new residents will acclimate, Gregory's new chair will finally arrive, the staff will feel a little less overwhelmed and understaffed. But meanwhile I myself was doing a little crazy thinking wanting to break Gregory out of the place while at the same time knowing that I wouldn't be able to take care of him if I did.

So we watched "Show Boat" for a while, had chocolate cupcakes with butter cream Easter decorations that Manny left as a gift for us, and finally I said my goodbyes and left Gregory to watch TV with the other residents (as unsettled as they may have been.) I was hard for me to leave but Gregory seemed to retreat into himself or was starting to nap and at least he was calm.

The roller coaster I am riding now is a lot less scary and turbulent than the one I used to ride but it is none the less a roller coaster with its ups and downs and one never knows what new adventure is around the bend!

Sad, Frightening, and Beautiful

Today at Lieberman I witnessed something sad, frightening, and beautiful.

First, the set up. Today at Lieberman we had an Oscar Previews Party. The staff wore formal gowns and heels. A few female residents wore beautiful hats with feathers or cabbage roses and a few male residents wore sport coats with a jaunty scarf tossed around the neck.. There was a red carpet to walk down and you could have your photograph taken by our volunteer photographer.

Slides of beautiful dresses, beautiful people, and previous Oscar winners over the years were shown, trailers from each film nominated for best movie were shown, all categories were discussed and residents could vote for whom they thought would win.

The first trailer was from Sharpshooter, biopic of Chris Kyle, the most-celebrated sniper in American military history. In the aftermath of 9/11, Kyle decides to serve his country by becoming a Navy SEAL.

Second, the sad and frightening. As we watched the trailer, Gregory began getting upset and his upset elevated fairly quickly. He got loudly verbal, anxiously shifted around in his wheel chair, and cried. The reaction was caused by the shooting and violence we were seeing in the trailer.

After ten or fifteen seconds of trying to calm him down, to no avail, I asked him if he would like to go out of the room. (I felt like a loving mother with a misbehaving child at the movies. Instead of expecting "self control," remove the child from the situation. ) 

He said, "Yes." 

I repeated, "Do you want to leave the room?" 

"Please," he said. 

He continued to get more and more upset emotionally as I was turning his chair around to head for the door when he picked up "Peaceful the Bear" and threw him down on the floor with such never before seen force and anger saying, "There!"

Up until then Peaceful was always loved and loving. Comforting. Watching this was amazing.

Third, the wonderful. Gregory and I hugged and rocked and I cooed calming words. He calmed down once we were away from the shooting and violence on the screen. The situation and discomfort was over and Gregory was OK again. I put Peaceful back into his lap and said, "Peaceful loves you!"

The beauty in this is that Gregory still has emotions and is able to express them. Also, it is important to note that the emotions are not unreasonable or out of control. Life has its ups and downs. It is good that Gregory is still able to experience them!

Update on E-Mail Update

My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)

Meanwhile I am afraid that we might be the closest that we have been to  having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.

For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc

One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.

Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")

Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.

I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!

I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)

Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."

A Difficult Episode

After my therapy session, I went to a neighbrohoood restaurant for a sandwich. Alaksh called me to ask me to come home because G was crying uncontrollably and he couldn't settle him down.

Luckily I was at "Pret" which is just downstairs from the condo and got back in 5 minutes. G thought he had done something terrible, was crying and saying in bits and pieces "You are going to hate me, no wait everyone, they were all there. He was very upset but naturally couldn't tell me what it was really about. 

So I got him to lie down in bed, I lay next to him and assured him: "Everything is OK. Everything is good. Everything is calm. Everything is happy. Everybody loves you." etc etc etc adding everything I could think of that was loving, peaceful, happy, and good. 

Both cats came to be with us and helped G get centered again. Gregory dozed for a while and then lie there thinking while I was working at my computer.

I chatted with Alaksh to see what was going on before the episode to see if we could figure out the triggering event but nothing out of the usual had happened. Often things are not what they seem so without needing any logic behind the cause of the episode, the bottom line is that Gregory was upset, had a tough time calming down, finally did calm down.

Moments come and moments pass. I have learned to get over the in-between. Meanwhile I am wondering about the accuracy of my use of lie, lay or should it have been otherwise?

Note to Companion

Gregory had a difficult night. We were watching TV and he got very upset. He usually likes the program we were watching, so who knows what upset him. He did let me know he was upset through his gestures and actions, not verbally.

I was unable to figure out why so we stopped watching. He sat with me at the kitchen counter while I folded laundry but he continued to be upset. I tried the usual like having him go to the bathroom, offering him some water, holding his hand. He went on trying to verbalize that something is wrong but couldn't really express that he was upset or what upset him or why. I tried to assured him by covering all bases and telling him that:

EVERYTHING IS OK. THERE IS NOTHING TO WORRY ABOUT. EVERYBODY IS HAPPY. NOTHING IS WRONG. THERE IS NOTHING TO THINK ABOUT. I LOVE YOU. I AM NOT ANGRY. NOBODY IS ANGRY. EVERYTHING IS ALL RIGHT. This helped a little. 

He sat and touched the folded shirts and pushed them around a little. Almost a random involvement with helping me fold. I offered him a shirt to fold but he didn't know what to do with it.

After the folding we had a bowl of cereal and he seemed better. We went to bed early, I read aloud, and he had a good night sleep. Perhaps the comments in CAPITALS above helped cover what was bothering him. Might be a good technique to use. Who knows.