Such Opportunities!

Each day I am presented with so many ways to share joy, love, kindness ... and for this I am grateful. This is one of the most important, valued gifts that Gregory on his Journey with dementia has given to me.

When I arrive at Lieberman to see Gregory, he lights up and smiles and is happy. We hug and kiss or give a forehead "boink" as Gregory calls it. And I am happy.

Some days if he is not feeling well or is sleepy he has a hard time focusing on me having arrived. Still I hold on to my joy and refuse to revisit or seek the past of who we were or what we have been through, good or bad.

The staff always are cheerful and enjoy my greeting or send one my way first. I always make sure they know how much I appreciate them and what they do for Gregory as well as all the residents under their care.

I can reach out and offer my hand to one of my many family/friends/residents at Lieberman. For a number of them, my presence or arrival evokes a smile, a wave, a nod, a salute.

For others, a touch can mean so much to someone for whom outside stimulus is not readily available. A smile sometimes evokes a smile returned.

"How are you today?" I ask and usually get a smile or an "OK." If the answer is "Not so good." I can empathize and hope that tomorrow will be better.

But mostly, the residents are not too down and do not obsess. For some however, obsession and/or negativity is the way they interact with their world and maybe that is "OK" too?

The simple act of snapping a napkin around Martha's neck, cutting up Batia's food, offering to help feed Harun (with the usual "FUCK YOU!" You are dirty!) all bring joy.

How hard is it to make a peanut butter sandwich for Bill who usually doesn't like the day's offering? What does it take to tell Gerri that her son Howard says hello and sends his love and when asked where he is, fibbing that he is still at work?

Every time I get off the elevator, Mini is sitting there. Every time she asks, "Who are you?" "Why are you here?" "Where do you live?" "When is dinner." These is the only conversation I have had with her. Mini is 100 years old.

Betty's favorite comment is: "I want to go to my room." or "I want to go to bed." The usual reply is "OK. Why don't you eat a little more dinner and then you can go to bed." Sometimes it works. Most of the times brings, "I don't want it. I want to go to my room."

When one of the residents asks for help it is safer to refer the request to one of the Resident Care Associates. I've learned that there are some requests I can fulfill like bringing an extra napkin or getting more juice (making sure it has the correct level of thickening for that resident.)

A common request in the dining room or while watching TV in one of the wings, "I want to go to the bathroom. Or "Take me out of here." I have learned to offer, "You're next. The helper will get you next." It usually works and works fairly well because the element of "time" and/or "next" doesn't really exist for many of the residents.

Some of the family/friends/residents are so far progressed with their dementia that they are not at all present but I find that sometimes a "Hello" or touch does make a connection. I keep trying.

These are just a few of the opportunities that present themselves. And I am grateful for each interaction. I enjoy being with Gregory at Lieberman and look forward to my visits.

Role Playing

To follow up on a previous post or two dealing with Gregory's new found interest in role playing, here is a list of current routines. I believe that he uses them as a form of interaction, definitely not communication as there is no sense in what he says.

Italian
Russian
Jewish
Developmentally Disabled
French
Silly
Baby Talk

To really picture what I am talking about, you need to experience him as he plays. Once he gets going, sometimes there is no stopping him until I pop a cookie into his mouth.

I get great joy out of the interactions and both Gregory and I usually dissolve into the giggles and at times get so tickled that we cannot stop laughing.

Today

Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.

And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.

In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.

On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.

After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.

No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.

When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.

My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.

I grief and am also grateful for Barbara's and Marie's deaths.

A Letter to Gregory's Last Companion

Ken,

Hope all is going well with your studies, and your assistantship. We are doing as well as can be expected. If you've been reading the BLOG (not expecting such) you will know what's going on. G continues to decline but I am continuing to rise above it in his support. We miss you but honestly do not think of you too often if only because we need to let you move on. You were the first companion and not only that you proved to be a special, loving person, so you will always hold special place in our hearts.

Alaksh has settled in and is doing well with Gregory. He is slowly learning how to interact with Gregory and not to read too much into their interactions as the Alzheimer's (as you know) is so completely unpredictable. One of the many good things about Alaksh that is different than you is that he cooks! And he is good at it. We loved your Ramen adventures but I have included Alaksh's cooking as part of our weekly time. Gregory and he go to Whole Foods, and together (as much as possible) decide what we will have for dinner (I just say "Surprise me!) and Gregory helps (as much as possible) with the cooking. And as you know, since Alaksh does the cooking, I have to clean up. But it is nice to be away and come home to dinner on the table. 

I am about to send my second volume of poetry to the publisher. When it is ready, I'll send you a copy. It is called, "Sit With Me A While Longer." It has at least as many if not a few more poems than the first volume and has lots more "chair" pictures. I am pleased with the results and as you can imagine many of the poems are informed by our journey with the big "A."

We are enjoying the beginning of fall, have mums on the balcony, and have been having the windows open more. Our kitties are now cats, continue to develop separate but interesting personalities and while they are the "demons from hell" at times, we love them and they give a lot back to us with their own kind of love.

Take care, I still have your pillow case and will mail it soon.

Fondly,

Michael (and Gregory)

Retro Normalcy

Besides keeping Gregory safe and happy, I feel my most important role as life partner and caregiver partner is to maintain, for both Gregory and myself, as much of a sense of normalcy as possible. That means daily routines, life skills, meals, entertainment, interactions, social relationships, sense of home, etc.

But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.

This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.

P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.

Being Aware

I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.

I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.

He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)

While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.

What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.

This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.

So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ...  there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.

With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.

Followup: Gregory Trying to Live in My World

Yesterday afternoon, my hand covered in potting soil, I asked Gregory to get me a garbage bag. He didn't know what to do. I got the bag myself. "This is a garbage bag," I said. "Oh, thank you," he said.

Last evening before going to see Camelot, we went out for a sandwich. I put an unwrapped sandwich in front of him and one in from of me. He pointed at his sandwich and asked, "Is this one for me?" "Yes." He thanked me.

Last night at the performance, Gregory forgot how to use the urinal. I tried to show him (in front of three other men at the other urinals and a long line behind us.) I finally took him into a stall, helped him lower his pants, made sure he was aiming correctly, and said, "Go." He thanked me.

Today getting dressed, Gregory forgot how to secure his belt. I showed him. He thanked me.

On our way out of the door to the car Gregory picked up his sunglasses. I explained, "You don't have to take those. You have a pair of sunglasses in the car." "Oh, OK." I turned off the lights and we left. Once in the car I noticed he still had the sunglasses that were in his hand. "We always keep a pair in the car for you," I reminded. He thanked me.

In the car I asked, "Are you hungry?" "Yes, very," was his answer. I handed him an energy bar and he replied, "I don't need that right now." He thanked me for bringing it.

This afternoon at a neighborhood carnival, Gregory forgot how to eat a Corn Dog. I explained, "Pick the dog up by the stick and bite the other end." He proceeded to pull the stick out of the hotdog. I put it back in and demonstrated how to eat a corn dog. He thanked me.

These are just a small percentage of the interactions gone awry over the last two days. There is one thing is am very grateful for. Can you guess? He thanked me.

Or maybe ...

Was his anger part of the changes that Alzheimer's brings or maybe we just had an argument. Couples argue you know. I hadn't thought of that for a while since I try to be so careful in my interactions with Gregory, usually taking most of the responsibility for keeping our life even and feeling the failure when they go awry. But sometimes a good "fight" is what every successful couple needs. Alzheimer's or not! Just thinking.