Seven Days or a Week

It has been seven days since I was with Gregory. Six days in California and one day regrouping at home in Evanston. I took the extra day not only to regroup, unpack, and chill but also I was aware of some avoidance going on.

I was afraid to see Gregory, wondering how I would feel and wondering how he would react. Would he have missed me? Would he remember me? Now that the documentary "hoop-la" was over, how would it feel returning to my day to day and my visits to Lieberman.

When I turned the corner of the hall towards Gregory's room, he and Manny were sitting in front of the balcony doors, looking outside and singing. I just stood there and didn't say anything. Manny notice me and moved away from Gregory. Gregory kept singing.

I moved more in front of Gregory, put my hand on his knee, and smiled big. I still hadn't said anything. Gregory kept singing.

Finally I said, "Hello my love!" Gregory looked at me with a blank look on his face. "I love you!" Gregory's face changed to his 'oh I have a visitor look.' "I am back and here to visit you. Did you miss me?" Gregory's face slowly, ever so slowly, began to register and process who I was.

"Oh my. It's you," he mumbled through tears and swelling emotion. He began to sob and I leaned in, hugged and held him. I slowly backed away but he held tight and said, "Stay, stay." And I did.

For the next fifteen minutes or so, as I talked and as he mumbled, he went back and forth between laughing, and delight, and tears, and being overwhelmed.

I agreed that it had been along time since I had visited and I apologized explaining where I had been and said I would try not to do that again. Perhaps my part of the conversation was more for my benefit than his.

At one point he leaned forward, very strongly and emphatically pointed out the window and said, "I want to go there!"

"You want to go outside?" I asked.

"Yes!"

"OK, we can go outside if you would like." In my heart I heard him saying, "I want to go home. I am inside and I want to be outside." But who knows how accurate my heart is when it comes to interpreting Alzheimer's Speak.

Finally he calmed down and we just had a good visit, with souvenirs and drinks of water and mouthfuls of chocolate.

I took my leave to go to a meeting with our lawyer, telling Gregory I'd be right back in ten minutes and he let me go without a problem. When I returned he was back in his usual mode of welcoming me for a visit and the trauma of my week's absence seemed over.

So what happened? As best as I can tell, and based on feedback from Manny, Gregory did not miss me while I was gone but realized and experienced the emptiness of my having been gone when I returned. It took him longer to process my face, who I was, what I meant to him and like a developing photograph, the negative image slowly became a positive image.

He was more overwhelmed by the memory of my absence triggered by my return than he was by the actual absence. Either way, we are both happy that I am home and I eagerly look forward to seeing him again today and visiting with the rest of my Lieberman Family as well.

Just Not Fair

Periodically, I find myself uttering "Just Not Fair" and while not fully sure what I mean, it makes sense to me and perhaps lets me move on from the reason why I said it.

This weekend, knowing that Gregory was fully covered by helpers Manny and Alaksh, and while knowing that he is always very happy to see me, he would probably not realize my absence; I decided to go to Battle Creek to visit his family over the Easter weekend.

Besides getting to see the family, I looked forward to my first getaway in over a year! Just knowing I could get into the car and take off, with relatively no worries, stop when I wanted to for lunch, antique shop along the way, and get to spend time with people I love was wonderful. The food was good (Colleen is a great cook) and I slept well. Shared a lot of conversation with everyone and laughed a lot.

But driving the four hours and passing so many places that Gregory and I used to comment on or stop at found me muttering, "This is just not fair!" Visiting without him at my side, even when in the past it was getting more and more difficult, is something I would love to be able to do again. Just not fair that Gregory will never again be able to go to Michigan to visit his family. Just not fair that we will not be able to stop in Michigan City at the Antique Market Mall. Just not fair that we will not be able to visit "Chocolate World."

I find that when I am able to separate now and then, I do well. When I do not think about Gregory when I am without him, I do OK. When I do not think about the rest of my life and the life we had together while I am with him, I do OK. But when the two cross over, the tears rise and at times overflow.

When I am at Lieberman giving him a manicure, or watching South Pacific again (and again,) or helping him with dinner, or just holding hands; I can hold my own if I do not think of home, my current life, or the past.

When I am at home I enjoy the solitude of the condo; the ability to easily take care of myself without having to do much planning; choosing when, what, and where I want to have a meal; I can hold my own if I do not think of Gregory and Lieberman.

When I am truly able to live in the "here and now," much like Gregory is able to do, I can hold my own.

But over the Easter weekend, I found myself saying "This just isn't fair" a number of times as I helped bring family up to date on Gregory's situation, at the Easter dinner so lovingly and beautifully prepared and served, when I rolled over in bed in "our room" at Mark and Colleen's realizing that Gregory was not there with me.

There are so many "This just isn't fair's" that I could make along list. But I choose not to do so here or to do so now because I would not be able to hold my own and I need to!

Fantasies Revisited and Released

One of my fantasies about the future with Gregory has been that we could still travel if we had a third party along to help. That could be in the shape of paying the expenses for a friend to travel with us or even a hired professional care giver.

Gregory and I have looked at every Viking River Cruse video sent to us via e-mail and talk about how wonderful the experience would be to travel the rivers of the great cities of the world, using the ship as our hotel and waking up to tour a different city every day or two. No packing and repacking, no busses trains or airplanes. Good food, comfortable travel.

http://www.vikingrivercruises.com

But the reality is that Gregory is past the ability to travel and I am past the ability to support him so he can travel. It is a sad realization but one that I probably need to be honest about.

Even packing and going to visit family in Michigan is full of difficulties in planning, routine, time,  and space. Then reentry at home, where you would expect home routine to help, takes its toll.

I am soon to release an update to family and friends and I will post it here as well but things have really been downhill for Gregory the last month or two. Things have been changing so quickly and basic skills have been disappearing so quickly, that I haven't been able to keep up with knowing how to cope with and/or accommodate Gregory with his losses.

Stay tuned ...

Usual Demented Person vs New Catatonic One

On Friday we went to Battle Creek Michigan to visit Gregory's brother Mark Sr who had a severe stroke about two months ago while we were in Mexico. This is the first time we were able to go for a visit. Sr is healthy and slowly but surely getting back many of his abilities. He still has his "Tracheotomy" because he cannot swallow or breath on his own and with it he cannot talk. He looks healthy and happy. The visit went well and seemed cheerful even. We loved seeing both Mark Sr and Diane, Renee and Lily, and thanks to sMark Jr and Colleen's for letting us stay with them. Colleen cooked wonderful meals for us. It was fun being with all of them.

We left Battle Creek at 1:00 on Sunday and got back by 7:00 ... but when asked how things went on the return trip, I would have to say "eventful" as opposed to "un-eventful" which is what I like to say, for example, after a flight to or from somewhere.

How was the flight? "Un-eventful!" Not this time.

By the time we left Sunday Gregory had developed a major cough and cold and he felt pretty awful. The ride home therefore was difficult for him. He dozed a lot. We did stop, however, and had a good time at Grandpa's Cider Mill for a piece of cherry pie, an apple cider donut, and a cup of hot mulled cider. Then we stopped at "The Chocolate Garden" and purchased the "tasting" and bought some truffles like: Cinnamon Dark Chocolate, Double Double Dark Dark Chocolate, Red Wine Dark Chocolate, and Cayenne Pepper Dark Chocolate. Yumm. 

By the time we got home Gregory was almost catatonic on me. I could tell that he didn't know the lobby, or the elevator, or the fourth floor hall. I paused and he didn't know which direction to go in the hall. 

When we go to the apartment he was able to open the door with his key (with help from my directions) but held the door open only a little way and didn't go in. There we stood with the shopping card full of our suitcases. I literally had to take him into the unit because prompts of "open the door wider" or "go on in" or "step out of the way" didn't help.

He roamed the unit like he had never been here before. I went into my Nurse Nancy mode, took his blood pressure and temperature (normal) and made him some tea and cookies. He didn't know how to sit in his purple chair so I helped. I put the tea mug and plate of cookies on the table and he arranged and rearranged the cookies on the plate like he wasn't sure what to do with them, and didn't know how to hold the mug let alone to drink from it. 

I put on some soft Beethoven in the hopes of helping him calm down but it didn't help so I turned it off. He would pop up and wander around the unit. After a while, I would gently bring him back and this time suggested we sit at the counter. We did so but he still didn't recognize the mug or cookies. I tried to get him to lie down on the bed to rest but he didn't know how, even with my physical guidance, and didn't stay down for long.

He didn't know my name. Thought I was Greg. Wondered why we were playing cards. Etc. As you can imagine I was quite scared as I had never witnessed such a complete and speedy drop of most skills and awareness since his "Trans Globabl Amnesia" which you may remember from 2003 when I thought he had a stroke and rushed him to the emergency room.

Talked with our friend Roger and he helped me cope (he is trained in Geriatric Dementias as a social worker.) Roger thought that perhaps besides the illness and the long drive, dealing with his brother's stroke, Gregory did not having the words to process all of his emotions and that was part of the problem. Makes sense to me.

Finally I helped Gregory get undressed,  got into bed, closed the lights, and he did settle down and slept fairly well. I administered cough and cold meds and drinks of water through out the evening. I held his hand or kept my hand on his shoulder or chest just so he would know I was near. 

By this morning Gregory is much better. Seems like the usual demented person is back rather than the catatonic one. Talk about being grateful for what you have (had.) He has been napping on and off but has had breakfast and lunch and we have been interacting and laughing on and off. He is able to communicate his needs and seems quite comfortable, contented, and aware of his surroundings. The meds are keeping his cough under control.

All (enough) for now :-)

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