Four Years Ago

If you are a fan of Facebook, you will know that they periodically show you a photo you posted in the past. This was taken four years ago at the Shakespeare Theater on Navy Pier. See the Ferris Wheel in the reflection. Both the wheel and Gregory have moved on to other places.

Thinking About Gregory

Let me move to some changes I have been able to make in my thinking based on my new awareness of who I am.

Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing. 

Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!

"Storm and Stress" is the English translation of Strum und Drang,  a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.

So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.

Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30. 

He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats. 

He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.

I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?

So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.

If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.

But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.

It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that. 

A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.

Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.

I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!

I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!

So back to 

Sunshine and Smiling

Gregory is happy when he can get outside and soak up the sunshine!

Before and After

When dealing with Alzheimer's Disease, there are many before and afters. Over the last 11+ years, I know that Gregory and I have experienced many: some good, some difficult, some ugly.

The secret to success, happiness, peace of mind, etc ... I believe ... in dealing with the disease, is being able to be in the present, seeing the person with the disease as a person NOT only as the disease.

It is not easy to do, but I find that if I tuck away the sad feelings until a later date, I can enjoy the joy of the moment and express as well as feel the love that still exists so strongly between Gregory and me.

If I spend too much time thinking about the before's or after's, I loose the precious now's.

Emotions are not bad. Emotions do not have to be "out of control!" My emotions surface as a barometer of where I am currently in my life and of how I am dealing with being alive.

So I feel that emotions are not bad, they can be helpful friends if you allow them to be. I welcome them when they surface, I thank them for the messages they bring, and I sit with them awhile even though they may make me sad and cause me to cry. Better said: As I allow them to make me sad and allow them to make me cry, and that is OK.

But then I thank them again and send them on their way so I can get back to living the joys and blessings of my life, of which there are many.

Another thing I do, if I do not have time to "sit with them awhile" is thank them, send them my love, and tell them "Not now! Please leave! Come back later when I have time to sit with you!"

It usually works for me.

This post of before and after was prompted by two photographs my friend Jan Yourist texted to me as she was helping Gregory with lunch today. Manny, Gregory's helper is on a religious retreat so I asked Jan to cover for today's lunch and I will be with him later in the afternoon, for dinner. and after to watch TV.

The before and after pictured below demonstrate how joy can be found in the present.

Jan's caption for the first photograph was: "I am hungry." Gregory looks good, is finally over his cough and cold, is able to keep his neck strongly straight, is focused, and posed for Jan's iPhone. He may not look happy but Jan interpreted it as, "I am hungry." And that is a fair interpretation.

This "after" photograph shows Gregory happy, smiling, probably chatty, stomach pleasantly full with Lieberman's delicious Kosher cooking (and it is good, I taste it often!) I do not need to add a caption as the photograph speaks for itself!

In closing, I could allow myself to be sad. I could dwell on who Gregory was in the past and who he is now. I could dwell on all he has lost and all I have lost. I could think about his being at Lieberman in his new narrow environment and me being at home in my environment which continues to grow. I could think of what lies ahead for Gregory and what lies ahead for me. While who knows what really will take place and when, most likely my outlook is better than his.

But why do that when I can choose to be happy. Happy to see this lovely photograph, glad he is well taken care of, glad he beat the recent cold, happy that we have such good friends like Jan who will take an afternoon to help out, happy. I just feel happy. The sad is still there but I thank it and tell it that right now I would rather be happy and maybe some other time I will allow myself to sit a while with sad!

This post is dedicated to Jan Yourist (click here to visit her blog) for her support as well as Corinne Peterson (click to see her site), (who hates to be called my Guru but she is) who has helped me to find peace of mind during Gregory and my journey!

Impermanence

Things are changing again. For the last week or two I have been weighing in on the heavier side of sad when compared to joy.

When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.

You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.

When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.

Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.

When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.

When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.

While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.

Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.

In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.

It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.

When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.

Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)

Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.

So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.

The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.

I will keep you informed.

Graph This

My life could be compared to a graph, a diagram showing the relation between variable quantities, typically of two variables, each measured along one of a pair of axes at right angles.

Sometimes I feel like a flat line, slogging through each day trying not to let too many emotions overwhelm me. I try not to think of the past, of Gregory when I am at home, of home when I am with Gregory.

Sometimes I feel like a saw toothed line, now up, now down, now happy, now sad.

Over time I am sure that the graph of my life is on an upward trend towards healing, towards coping, towards learning to live my life without the Gregory I first met some forty years ago.

When I am with him the line stands still, I am happy, the graph on hold. We have developed our small interactions that may or may not mean anything to an observer but which mean the world to us, a look here, a wink there.

I tell him I love him and he replies, "OK" or he shakes his head. Or I ask, "Do you love me?" and he nods. I get silly and in a high falsetto voice screech "I love you this much!" with my hands flying out to my sides or over my head. He giggles and that makes me laugh as well.

I take his Teddy Bear, named Peaceful, and put on a puppet show. The bear dances, and sings, and hugs Gregory while smothering him with kisses. Gregory laughs, or looks at Manny with his This Guy is Crazy look, and once Gregory grabbed the bear's nose in his mouth, biting and  "grrrrring" back at the bear as he shook his head from side to side bear style.

We hold hands with the hand holding in constant motion, perhaps to cut through the malaise  that often accompanies Gregory's inability to focus and to let him know, "I am here. I love you." I stroke his leg or squeeze his arm with the same message.

Or we sit in silence, just being there together; looking out the window, watching a movie on his television, spending time in the shaded park out back.

I give him treats which he easily receives as I pop them into his mouth: mini-cookies, chocolates, a drink of juice, a piece of fruit. Sometimes I put a pretzel rod into his mouth and he will reach up to hold it as he takes a bite and then continues to feed himself until the pretzel is gone.

I break into song, "If you're happy and you know it clap your hands," as I clap my hands. Second verse I clap his hands and sometimes he will continue clapping along as I sing.

When I am not with Gregory, the line can stand still as well. I loose myself in the here and now of a cup of coffee on the balcony over breakfast or on a walk in the neighborhood.

I sit at my computer and write as the ideas flow non-stop trying to keep up with my typing skills.

Grocery lists, folding towels, washing dishes, petting the cats come without the need for much through and they are good. A visit with friends or dinner out help time pass.

Then, when I least expect it, the graph line spirals out of control and I am mired in grief and sorrow and tears and loneliness. And I cannot imagine how I will continue to go on without the man who I love more than a graph could ever represent.

And I cannot see for the tears which splash my glasses and chill my face as they run down my cheeks. And the emotions are so strong that panic sets in at having to function while the emotions continue to escalate.

And graph lines have upward or downward trends, they DO NOT spiral. They do not spiral.

Then being spent, somehow a calm enters the lines of the graph and for a while the line is again flat. Emotions kept at bay. Sometimes up, sometimes down, sometimes happy, sometimes sad. And the next day will arrive, trending, trending.

I say I am aware of GRIEF sitting on my right shoulder 24/7/365 but also great JOY sitting on my left shoulder. Most of the time I am in balance.

A July 4th Happy Birthday

Celebrating Gregory's birthday at the Lieberman Center with care giver Manny and companion/friend Alaksh. Gregory turned 66 today and it was with mixed emotions that we partied. In the first photo Gregory is not unhappy, just unfocused. In the third photo you will see his smiling face.

I think he knew it was his birthday and when I sang the birthday song to him on arrival he cried and I cried and we hugged. Later when we lit the candle and all sang, he sang along. After a little coaching and demonstrating, he blew out the candle. (P.S. He also blew out the candle on my cake last March.)

Really bittersweet. Devistating if I think of the past. Wonderful, grateful, and blessed when I think only of the here and now! 

An E-Mail Reply

From niece MB (daughter of Al, Greg's oldest brother:) 
I have been concerned about you since Gregory has moved into his new home. I know they are taking care of him. That will give you time to make adjustments to your life.

Thanks for the kind words. I am doing well. We have been struggling with this for over ten years and the major difference, now that Gregory is in the advanced stages of the disease, is that the concerns, needs, and ability to define new normalcies have been narrowed. 

For the most part the routines and normalcies for Gregory are now predictable whereas during the early parts of his disease, it was a baseball game without rules!

As for my living alone, our relationship was always one of parallel growth. We both had the same interests and friends but maintained our individual interests and friends, and of course the two overlapped at points. So while I have to redefine my new life living alone, I do not have to redefine my life or identity entirely. 

I have had to learn to live in the present moment, as Gregory does, and to see life through his eyes. When I am able to do that, I am happy and content. When I begin to see his life through my eyes, I have more difficulties avoiding crying and grief.

Not sure if there will be a price in the future, but for now I have been separating myself into two parts. When I am by myself and at home I try not to think of Gregory and our past 39 years and when I am with him I try not to think about home and my life and our past 39 years. 

Some Buddhist monks spend a lifetime learning how to live in the here and now, without living in the past or the future. Both Gregory and I have been able to do that. He because of the Alzheimer's me because of my great love for him.

At home I'll keep busy with friends, keeping the condo up, writing, etc but when I am with Gregory, sometimes we just sit and hold hands and that is paradise and enough.

In the beginning it was difficult learning how to let go and become the Secondary Care Giver with The Lieberman Center (and their trained, knowledgable staff) being the Primary Care Giver. 

I am still Gregory's advocate but have begun to know how to choose my "battles." The staff at Lieberman actually listen to and hear what I say, try to accommodate my suggestions and Gregory's needs, but also help educate me when I am out of order or unrealistic in my goals for him.

Gregory's CONDITION is much worse and continues to worsen but his SITUATION is so much better ... so my heart is light.

Wisdom

Yesterday I played some Chopin for Gregory. He began to get upset, then choked up, then cried. I decided that the tears were probably good for him. I asked, "Are you happy or sad?"

He replied, "I am everything. I am all of it."

Can't get more enlightened than that!

Update

Just realized that I haven't given you an update on Gregory in a while. So first that and then to the post which brought me here so late at night.

Gregory continues to do well after a hectic first month arriving at Lieberman. His strength continues to return, he is more and more alert, he is happy and periodically cries for joy.

Communicative - no. Able to walk on his own - no. Able to feed himself - somewhat as prompted and when able to eat finger food.

Since he is still in a wheel chair, and by the time he notices he has to go to the bathroom, it is too late so we have "accidents." But the staff cleans him up quickly. He gets upset at having to "pee or shit himself" but by the time it is done, it isn't a remembered issue.

He has had many visitors and several repeat visitors. He is always happy to see our friends and family, may not remember your name but certainly KNOWS YOU and feels his love for you.

When reminded (which I try to avoid) of his past he gets a little upset: piano. painting, swimming. etc. He still is very much (fortunately) in the moment, doesn't ask why he is at Lieberman and doesn't ask about going home. He doesn't ask about the past or inquire into the future.

I have hired a helper to be with Gregory from 11:30-5:30, five days a week. Our Northwestern companion spends time with him the other two days a week.

I encourage you to visit Gregory if you are so inclined. I will go on the first visit with you (just to fill you in on the details and to help you acclimate) and then you are welcome to go back whenever you want (or we can go together again if you prefer.)

I would ask you to avoid visiting between 11:30 and 12:30 and 4:30 and 5:30 which are meal times. It gets a little overwhelming to have too many people around at that time. If you arrive and he is an an activity you can join the activity or have the helper take you and Gregory to his room for a visit. The helper will give you and Gregory  your privacy.

There is candy and cookies in his "kitchen corner." There are beverages in the refrigerator. Help yourself. If you want to offer something to Gregory, first get the helper's help.

If Gregory tries to get out of his wheel chair, encourage him not to. If at any time you are uncomfortable with what is going on, ask for help from his private helper or any of the helpers around.

If you do have any questions or concerns, please feel free to give me a call and ask.