Visiting Gregory

When people visit Gregory for the first time they wonder if he will know who they are. My reply is "YES!" He may not know your name and he may not know how he knows you but he will know that he feels a special love for you and that you feel a special love for him.

Recently, a friend when asked if he wanted to visit Gregory with me after going out to breakfast replied, "I don't think so because last time I saw him he didn't know me. He kept looking away."

I think my reply was something like, "Maybe he was just distracted because you visited him on a day when a lot was going on around him." So we scheduled a visit.

In thinking about our upcoming visit I was wondering, "What if Gregory doesn't recognize him? What should my response be? Is that a good reason for a friend to no longer visit Gregory?"

Then I was reminded of a quote I read a long time ago about an old man who was asked why he got up early every morning and rode on a bus for an hour to go to the old people's home to visit his wife when she no longer knew who he was. His reply was simple but powerful, "She may not know who I am, but I know who she is!"

Unless a person with dementia is fully catatonic (and maybe even then) they enjoy visitors. They enjoy seeing someone who smiles at them, holds their hand, talks to them, strokes their head, gives them kisses. These are things everyone enjoys and in the narrow world of a memory care facility, perhaps they are enjoyed even more!

So I would hope that friends and family will continue visiting Gregory, when I go with them or if they go by themselves and whether he recognizes them or not, to help make his life a little bit more enjoyable and to make sure he knows that he is loved. Gregory may not know them but they know Gregory, and that matters.

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.

Oh My Heart

Yesterday when I arrived to visit Gregory he was being changed by the aides. I didn't let him see me so as not to complicate the situation and waited in the hall until they were finished.

Changing Gregory's diaper (I hate using that word) is at most , when he cooperates, a difficult situation. He is tall, weights 180 lbs, and has to be moved to his bed using a hoyer lift. A sling is inserted behind his back and brought up around his legs. The ends of the sling are attached to the machine and he is lifted into the air, swung around parallel to the bed, and lowered into place.

Then the aides take off his pants (and often his shirt,) clean him up, and put on a new diaper. This is done by rolling him from one side to the other. The aides have to do all the work because he cannot roll himself. Then they put on new clothing, reattach the sling, lift and swing, lower him back into his wheel chair.

I would guess that this is not only a little embarrassing (although I think Gregory is used to it by now,) but uncomfortable and at times painful. Depending on Gregory's "state," it is also frightening for him to be dangling in the air and he becomes resistive, known to swear, kick, and/or struggle. The aides are kind and gentle and are able to "talk him down" but as I said, it is not an easy activity for Gregory or the aides.

That described, yesterday after he was back in his wheel chair, I came into the room. "Hi, its me!" But Gregory was still "recovering" from his ordeal and was unable to focus. I tried to put my face in his line of vision, continued announcing myself, but he was still unable to focus. I think that he was actually unaware that I had arrived.

Finally he did a double take, and I mean a double take like in the movies, and he was able to focus on me, realized who I was, and a large smile came over his face.

Here comes the title of this post: He looked into my eyes, with this oh so pleased look on his face, reached out towards me and said, "Oh, my heart!"

I melted.

A Perfect Moment

I sat with Gregory for a couple of hours, dinner was just around the corner, and the Resident Care Aide had just arrived to change him. I said my usual: "OK, I am going to go now. I love you. I will visit you tomorrow. OK?"

"WAIT, WAIT" - Gregory almost shouted at me.

I sat back down took his hand again and asked, "What?"

"I ... I ... JUST WANT YOU TO KNOW ... " he almost shouted again ... and then he stalled.

"That you love me?" I asked.

"YES, YES," he replied.

I kissed his forehead, "I love you too!" and left.

Whether that is what he wanted to say or whether I invented it ... it was another Perfect Moment!

Evening Get Together

When you first get off the elevator at the fifth floor, you enter the main living room area of the memory care unit although it is somewhat more institutional than it is home living room. It is also known as the "Music Area" in which one CD or another is usually playing, classical, Frank Sinatra, etc. A very calming area.

After dinner the other night; Gregory, Manny, and I were joined by Gerrie and her son and son-in-law Howard and Robert as we sat in a circle in the living room. With music playing softly in the background, those of us who could carry on a conversation did and the others enjoyed being part of the group.

I noticed at Ben and Edward were hanging out around the corner listening in on our discussion. I invited them to join us which they silently did. Ben sits in a baby stroller type PVC pipe construction that enables him to walk around the unit. Edward, formerly a doctor, uses a wheel chair and "kick walks" himself around.

So picture this, here is a group of 8 people sitting around in the "living room" after dinner having a friendly conversation. If you can stay in the moment and see through their eyes, a good time was had by all. What a strong sense of community!

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.

A Telephone Call

I was a little leery of having a friend visit Gregory for the first time without me helping to guide the experience but I was proven wrong. LB assured me she had lots of experience with nursing homes and dementia and as long as she was in the area she really wanted to pay Gregory a visit. I was home ill and couldn't join her but "gave her permission" to go ahead if she was willing to take the risk.

I called to check on how the visit went and told Gregory's day helper  that I would not be coming in because I was not feeling well. The report back from Manny was that Gregory was so happy to see LB, was more alert and responsive and that they had a long animated conversation (all be it truncated and alzheimered) more so then he has ever seen.

I was very pleased to hear this. Manny then asked if I wanted to talk to Gregory on the cell phone. Usually I hesitate to have people talk about me when I am not visiting Gregory assuming he is unaware of my not being there until he sees me next. But I said, "Sure."

It took Gregory just a few seconds to get the hang of talking on the phone with me. I told him I wasn't coming to visit. "Oh, OK." I do not feel well. "Oh no." But I am OK and I will see you tomorrow. "Wonderful. " I love you. "I love you." Bye. "Bye."

It was a short and simple conversation but wonderful for me to have had that experience over the phone. Many lessons learned as well.

Joy is in the Air

Yesterday, after visiting Gregory for dinner, I experienced Joy. 

He was responsive, in a good mood, and happy. We spent time together over dinner and then watched his DVD of seasons backed with classical music, very comforting. 

On the way home I stopped to pick up dinner at my new favorite Chinese "hole in the wall" carry out restaurant. It is located on Golf about half way between Gregory and home. 

As I was walking back to the car, carrying my bag of Fried Rice, Shrimp Egg Fu Young, and Mongolian Beef; I sensed something different. 

Was it the feel of Spring in the air? Maybe. Was it the smell of the freshly cooked food in my bag? Maybe. Was it that my back (which has been out since Easter) finally had begun to feel better? Maybe. Was it the good visit with Gregory? Maybe.

Then I realized what I was sensing was Joy. Everything was good and in its place. And I was happy and content. And my feet seemed to be hovering above the pavement on which I was walking and my heart was soaring through the clouds, the blue sky, and the setting sun.

Spoiling Myself

Gregory's facility, The Lieberman Center, is approximately two minutes away from an IHOP (International House of Pancakes.) Lately I have been visiting the establishment as a way of being mealtime good to myself before or after a visit to Gregory.

Today at Lieberman

Today, I got to Lieberman by 1:00. Gregory was happy to see me and seemed able to focus pretty quickly on my presence. He asked a question I haven't heard in several weeks, "Where have you been?" My stock reply, "Shopping." He laughed. I laughed.

I sent Manny on a "break" so Gregory and I could be alone. Very often we just make "nice/nice" or sing or sit and watch South Pacific, the musical. Often I get there by mealtime and I sit with Manny or Alaksh and help Gregory with his lunch or dinner. Sometimes, if I am the only one there on that day, I will take turns feeding him and helping him feed himself.

I pulled his wheel chair as close to me, head on, as I could. "Can we talk?" I asked. "I love you so much and really miss you. You mean so much to me and I want you to know that I am here for you, to help you and to take care of you. I know that we both didn't expect it to be like this but this is our life now. I wish I could make it all better but we both know I cannot.

I hope you are happy here and know that everyone likes you and is taking good care of you. I am happy. I want you to know that. I hope you are happy too. The money is OK so we don't have to worry about that. Now that you are OKed for Medicaid, all of this help is free, we don't have to pay a penny. (Actually his Social Security money goes to support, in part, the Lieberman fees.)

I know you have forgiven me for the times when I was mean or angry. I know it wasn't your fault but I am just human. You have been a trooper through all of this and have been so accepting and loving.

I am not sure if you understand everything I am saying but I wanted to say it. You don't have to say anything to me because I can see all your love for me in your eyes. In your and my tears. It is OK for us to cry together. Then we can be happy again. Or maybe the tears are of happiness. Tears of love.

You are my love. You are my boyfriend. Your are my best friend. I love you so."

At this point I offered Gregory a tissue. I had been wiping both of our tears but now he put it to his nose and blew. Still knows how to do that. We held hands the entire time.

At one point I got on my knees in front of the wheel chair and laid my head in his lap. He put his hand on my head and patted me. It was not easy for him to control his muscles but he did it and we both felt good. I kissed him all over his face and sang, "Soft Kitty, Warm Kitty, Little Ball of Fur. Happy Kitty. Sleep Kitty. Purr. Purr. Purr."

This is the song that Dr. Sheldon Cooper's (from the TV series Big Bang Theory) mother used to sing to him when he was sick. It has become Gregory and my theme song. Often I will tip his chair back, put a pillow under his head, and sing him into a nap. Which I did after our talk. I also put a blanket over him because blankets are warming and comforting when taking a nap, even when you have Alzheimer's and even when you are in a wheel chair.

It was a good afternoon.

Visitors

Mark and Colleen visited this weekend from Battle Creek Michigan. The visit was a difficult one because it was the first time Gregory's niece and nephew had witnessed him in his new, greatly deteriorated state. Also Gregory had been in the hospital for three days prior to their visit, was then transferred back to Lieberman on the day they visited, and he was weak and more than usually "out of it" after his Grand Mal Seizure and newly prescribed Dilantin.

Did he know them? I would say yes, he recognized them, was happy to see them, and interacted with them. (Minimally but that's an OK thing.) Could he explain who they are? Probably not but that doesn't really matter. Was there any in depth conversation or interaction? No, that doesn't happen anymore with anyone including yours truly. Did we have a good time? No, he was in bed and we sat there. So a good time - no, an important time - yes!

Visitors are important to Gregory if only because they are in the room and provide some distraction from his routine. It shows him people care and love him. He can pick up on their smiling face and loving hugs. He knows there is more to his world than just him and/or me.

So if you want to visit Gregory, that would be great! I accompany people on their first vist to provide an overview of The Lieberman Center, of what to expect from Gregory, of what to avoid conversationally while visiting, and what to do if physical support is needed. Then people are welcome to visit on their own. For future visits, I would like to know when people are planning on visiting just in case Gregory is not available, has other activities or volunteer visits, and so I can schedule my visit at another time to help make his day is fuller.

Update

RG,
Hi. Greg continues to settle in. I go every day to visit but only for an hour or two. I am hard at work learning my new role as secondary caregiver. They are getting to know him and how to provide for him. He is content and "spends his day." To be with him is to realize that he is a very different man than he was before the psychotic episode. He is really living in the moment and is happy with that. Today we visited with his companion Alaksh and G was happy to see him. We set up a desk for him, stocked his mini-refrigerator, assembled two lovely lamps - one for the desk and a matching one on his night stand. I am creating a refuge for him but mostly for me and his visitors away from the Fellini environment that is any nursing care center. Day by day...

Fondly,

Michael