Painting: Successful or Not?

Didn't have a chance to tell about Gregory's most recent painting experience. Until the end it seemed like the session was not going to be successful.

Last time we used thin, plastic food handlers gloves and felt that perhaps they got in the way of Gregory's actually "feeling" the painting. So this time we decided to try the latex medical gloves again.

It took forever to get the latex gloves on because he would not open his hands. Clenched into tight fists, he resisted all attempts at getting him to relax.

I knew that the longer it took to actually start painting, and the more struggle we had in getting to that point, the less success we would have with the actual painting.

Katharine and I both kept calm and kept at it. Once the latex gloves were on, and once his painting shirt was on, we began.

He had a difficult time focusing. I am not sure he once spontaneously "painted" without our trying to move his hands for him. We moved the painting tray around at every angle from flat to a 90 degree angle. One was not more successful than another.

We put bright colors on the paper, announcing the color name, and trying to get him to look at the paper. Difficult. We dropped paint from the tube four or six inches above the paper, while placed in his view to see if the movement would help. Difficult.

We moved his hands around, tapped his fingers, etc to try to set him in motion and to loosen him up a bit. Difficult. He has difficulty focusing and several times when prompted, "Look at the painting," he replied "I am!" But he wasn't. Difficult.

When overwhelmed or needing to 'shut down' he has an easily recognizable posture, closing his eyes and rolling his head, shoulders, and body forward as far as they can go towards his lap. It is his way of saying "This is too much for me right now." Katharine and I backed off and let him withdraw for a while before cajoling him back.

It was time to finish up as we were close to dinner time. We asked, "Do you want to continue?" He replied, "No."

"Ok, then we will stop," we confirmed. He replied, "No." but we stopped anyway.

We had now reached the end of this painting session which had seemed unsuccessful, should I say a failure? We took off Gregory and our gloves and removed his painting shirt. I held the tray and painted paper (whose marks were more Katharine and mine,) showing Gregory and saying, "Isn't that beautiful?"

To our amazement he focused on the paper for a very long time without any coaxing. He whispered, "Oh. Oh. Beautiful. Wonderful." Several times. He looked up and down, left and right, admiring 'his work' and repeated, "Oh. Oh. Beautiful. Wonderful," in a whisper that was almost sacred.

Katharine and I looked at each other in wonder. As we were leaving I said to Katharine, and she agreed, "That last part made the whole experience worth while!"

Next week we are going to try an easel that is perpendicular to the table and use Craypas, fat Crayolas, colored pencils, and markers. Always experimenting to see how we can make the experience better for Gregory.

Gregory Maire: Studies in Color and Form: Part One The Success

On December 4, Gregory had an art show at The Lieberman Center. I will write about the opening reception in this and the next blog post. The first one took place at 2:00 for residents and was a great success. The second one took place at 6:00 for family and friends and it was a great failure ... but with a surprising twist.

If the first paragraph doesn't have you eagerly coming back to find out what happened, I don't have a good grasp on understanding the literary vehicle called the "Cliff Hanger." 

On a previous post I shared photos of the first floor area where the show took place. It looked great. Refreshments consisted of cheese, cracker, fruit platters, and apple juice all served in an adjoining room. In the excitement of the event, I did not remember to take any photos of the food which was beautifully catered by the Lieberman Kitchen.

Approximately fifty to seventy five people attended including residents from all floors, many residents from Gregory's floor, family members of residents, and staff. The Lieberman Life Enrichment Department ran the show helping residents get down to the first floor, partake of the refreshments, and above all see Gregory's paintings.

Since the event took place at "shift change," many of Gregory's nurses and resident care assistants (RCAs) were able to drop by, say hello, grab some food, and learn a little more about the talented man they help every day. Many of Lieberman's executives, directors, and coordinators etc dropped by briefly to say hello.

Every one got a "Free Post Card Souvenir" of the show and seemed pleased to have a little "take-away" to keep on their nightstand or desk or bulletin board. As I passed them out I used the above phrase so people would understand what they were getting and that the gift would not cost anything.

Music was playing in the background. People were moving around slowly viewing the paintings (by push kicking their wheel chair, being pushed in their chair by a helper, or walking on someone's arm) Visitors were enjoying the cheese, crackers, and fruit. Jan, a volunteer, documented the event taking photos. When I receive them, I will share the ones she took of Gregory, Mannny, and me but will not be able to show you the wonderful, happy, engaged, energized crowd due to privacy rules.

At one point our photographer organized a large group of people consisting of Gregory's "Community/Family" into a semicircle consisting of G at the center, Manny, me, six or seven staff members, and approximately a dozen of Gregory's "Floor Mates." Again, such joy was being shared by all.

Gregory, while still acclimating to his new medications, was fairly present and seemed to enjoy the all the attention he received. Several residents from other floors wanted to take a picture with him. Many compliments were given at how beautiful, colorful, etc his paintings were.

In the refreshment room, I welcomed everyone and thanked them for coming on Gregory's behalf and orchestrated a round of applause for him. His face showed a smile and he knew that the attention was directed at him.

There was a wonderful energy throughout the entire area and entire event which I have not seen in such proportions previously. Sometimes at a Sunday Afternoon Concert I have felt it but maybe because this was in honor of my Gregory, it felt stronger to me.

I think that all of the residents felt good at being included in this celebration, happy at knowing Gregory, and excited by the novelty afforded them on this Thursday afternoon.

I am so grateful to the Life Enrichment Department (including Andrea, Wanda, and Katherine, and Leslie) to Gregory's Social Worker (Hannah,) to the head nurse on Gregory's floor (Alicia,) to Gregory's Activities Director (Alma,) to the Lieberman Kitchen Staff, to our Photographer (Jan,) to Lieberman's Volunteer Coordinator (Debra,) to Gregory's Helper (Manny,) and to others which I have inadvertently failed to mention who helped provide this experience to celebrate Gregory.

Finally, I am grateful to everyone at Lieberman who makes this community a safe, happy, comfortable, enriching place for not only Gregory but for so many people to live the rest of their lives being well taken care of with dignity and respect and love.

Today

Sometimes Horoscopes make a lot of sense!

July 08, 2013
Aries (3/21-4/19)

• You can't do it all today, which is a fact that will become dramatically apparent almost as soon as you get started this morning. But instead of feeling frustrated, start paring off a few tasks -- and adjust your expectations. Despite the current rumors, you are not a superhero! It's much better to do less and succeed often than it is to always aim for the stars and continually fall short of them. Climbing a smaller mountain is still climbing a mountain.

Start Your Engines Part II

Yesterday morning I work up before Gregory and lie in bed just being quiet. He started stirring and I offered, "Do you want to get up or go back to sleep?"

He offered about ten minutes of confused beginning utterances, hemming, hawing, etc none of which was coherent to me or most likely to him.

Finally I offered, "Get up or sleep?" He pushed back the covers and got up. Success!

Next I went with him into the bathroom, directed him to the switch that turns on the heat and he knew what to do. Success!

I pointed to the toilet, and he knew what to do. No details needed here. Success!

Next I opened the medicine cabinet and took out his shaver box (contains shaver, brush, cord.) He knew how to plug it in without too much study and shaved. Success!

When he was finished, he opened the bathroom door. I pointed to the underwear and sweats on the bench just outside the door. He knew what to do. Success!

He had a little trouble getting the sweat shirt on correctly (even though it takes the same understanding that getting his undershirt on does.) I held back, he tried several times, "Oh shit!" "Oh shit!" "Oh shit!" finally getting it on correctly. Success!

So what we have here is a lot of successes in a failing kind of way!

P.S. Last night as we were drifting off to sleep, Gregory asked, "Do you know where you are going?"

"I am not sure what you mean," I questioned.

Tapping my head with his finger he replied, "In here, in here."

Gregory's Meditation Session One

Yoga Nidra with Corinne Peterson has been so beneficial for me that I decided to see if it would be of benefit to Gregory. The concept was not to follow Yoga Nidra exactly, but to allow Gregory some "time away from himself." Often he is frustrated when he can't tell you what he is thinking, or he struggles to figure out how to cut a piece of meat or brush his teeth. The more time we can allow him free from pain, distraction, frustration etc the better. So we are calling this, as we have called other experiences, "A Nobel Experiment."

Corinne and I began an e-mail dialogue on what a Practice (yoga session) might look like for someone with Alzheimer's. We needed to take into consideration language and communication difficulties, Gregory's inability to focus on complicated directions, and other Alzheimer's issues. We were concerned that he would not be able to give us feedback on the process.

Following are some of the thoughts Corinne and I shared:

"We've talked a little about what the session on Thursday might feel like. Here are a few more thoughts and suggestions. I am just thinking out loud, you are the expert in Yoga Nidra, I am somewhat the expert in Alzheimer's although Gregory is the real expert in Alzhiemer's, just unable to share his expertise.

Spend most of the time in levels 4, 5, and 6.

Use less detail. Start at head and work your way down to toes but do so simply. For example "be aware of your mouth." Don't complicate it by "left mouth" "right mouth" "top of mouth" "bottom of mouth." etc. Lips-OK, Tongue-Ok, Teeth-Ok for example but leave the detail out? 

Hands - OK. Fingers - OK but leave out left and right. Leave out thumb, pinkie, ring finger, etc. Allow enough space for him to process the suggestions made. We will have to play this one by ear, maybe his face will cue us? 

For 5 breathing and noticing in and out is good. A countdown from 12 to 1. Gregory cannot count by himself. Instructive: "We will count our breaths down from 12. Breath in, breath out 12. Breath in, breath out 11. etc. Our breathing could be loud enough to guide him as you cue.

For 6: one or two emotions. Happiness and Sadness for example. After suggesting the emotion, maybe let Gregory create his own thoughts during the silence instead of complicating it by offering options or alternatives. Then go to Sadness and let him create what makes him sad. Then come back to happiness and leave it on the positive note. Maybe the word itself will be enough for Gregory to think about.

End with a guided imagery through a forest. Suggest the images leaving a lot of quiet space for him to process. Something like "Lets be quiet for a while and think about a forest." His processing is so slow that the space is important. Perhaps offering generalities of a forest and again allow space for his processing would help. Picture the trees......  Do you see the sun shining through the trees... Picture the path..... Do you see any animals.....

Allowing the right amount of space for him to process the suggestions is important. Not too much. Not too little. We will have to play this one by ear, maybe his face will cue? 

Corinne, based on our conversations the last few times, how does all this sound to you? The goal is to tailor the session to Gregory. I am just coming along for the ride so don't worry about making it meaningful for me. I will probably have as my intention to entrain with Gregory to "feel" how it is going for him. 

Looking forward to the session.

• • • • •

Corinne,

Thanks for today. I think it was a great success. Your pacing was perfect as was your simplicity of suggestion. We do not need to know exactly what Gregory experienced in detail but I think his "waking" reactions were very telling as to your success. (Two thumbs up. "Wonderful." "Amazing." I was SO PLEASED! Did you notice the tears in my eyes? Joy!
Michael

Corinne shared an e-mail that Richard Miller sent in answer to someone's query about Yoga Nidra and people with dementia.  He is the guru of Yoga Nidra and her teacher. It was interesting to see how what he had to say overlapped Corinne and my discussions.

iRest (Yoga Nidra) for this particular group is a wonderful offering, especially when delivering certain aspects of the practice that are sensate oriented, such as body sensing and breath awareness. 

These practices are focused in the here and now, and can help this population feel at ease and calm. Also imagery can be a useful aspect by bringing in images that the individuals give you and speaking them back, like you are taking them on a beautiful and present focused journey. 

I also think any way to interweave joy through things like chocolate meditations, smelling flowers, holding hands in the heart to evoke feelings of love, etc., can be wonderful elements to weave into a practice. 

Using hands on materials like we do with kids, i.e., cloth or textures to touch, things to smell (floors) or hear (bells) or see (die settling into a water vase.) 

The sky is the limit. Just our imagination as teachers as to what we can bring to enliven the senses, nourish the felt sense of being and being in the hare an now, etc.

Thoughts on a life.

Thoughts on a Life

Perhaps my success is that I have been able to create for Gregory, a life in which he can truly live in the moment, in which his now and his world are all that matter. 

I have organized our life fully and carefully. This gives Gregory a certain sense of consistency  and control and allows me to make sure that what needs to be done gets done, especially because I am the one who has to do it ... all. It allows him to enjoy his life day to day without having to worry about any details.

The purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment. How often have you stopped to think about all the things you do to run your life and that of your loved ones? These thoughts on what it takes for us are mine, shared.

Gregory wakes up, cleans up, and puts on his morning "Sweats" which I laid out the night before. He has breakfast, which I assemble and put on a tray, including cereal with bran buds, fruit, and soy milk; a glass of orange juice; yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on crackers. On the days he can, he cleans up after breakfast but usually leaves several things on the counter, not knowing where they go. On the days he cannot, I take over.

Then Gregory sits at his desk spending several hours with the New York Times, which I have arranged to be delivered every day. My idea to do this was successfully based on the fact that Gregory still reads, likes his news, but is no longer able to navigate his computer (we used to get the newspaper on-line.) I kidding call this concept "using a brand new technology" since we have never had a newspaper delivered to our door before this."

Some days Gregory can select what he wants to wear, other days I have to help. He is not easily able to relate a temperature number to the season to what kind of clothing to put on. Sometimes I have to notice that his underwear is on backwards. Sometimes he attempts to put on two pair of jeans so I help him through. Often he forgets his belt which confuses him about where to hook his cell phone and keys.

So far he can still make a large salad for his lunch. I help when he gets confused and on some days clean up after him. Often we plan a lunch out around our errands. He always goes with me because I cannot leave him home by himself any more but also because we continue to enjoy each other's company. I decide what he will order as well as what I will order for lunch (same for dinner out for that matter.) I used to ask: "Do you feel like having meat, chicken, or fish tonight?" That no longer works so I just decide. Usually he "goes on" about what a good choice I made and that makes me feel good.

Recently I put together a process for "interviewing, letter of applicationing, background checking, and letter of agreementing" a Companion to spend time with Gregory. I created a process for this with which I was comfortable and which insured the Companion's, Gregory's and my "rights and responsibilities." Part of this includes a brief history of Gregory's dealing with Alzheimer's, what the Companion might encounter, and how to deal with it.

I currently have two college students acting as Companion, each of whom spends 4-8 hours a week with Gregory. This enables me to get out for a meeting or appointment when I have to leave Gregory home alone but also gives me some free time away from my 24/7 responsibilities, just to be able to go out and "play" by myself or with friends.

The interesting part about having a Companion is that I feel like a mother with a young child having to add to my "duties" scheduling, planning, thinking ahead, dealing with actual and potential Companion late arrivals, illness, cancellations. But it has been working well and Gregory has been enjoying the company of "young blood" which provides a different environment for him than having me around 24/7. So this seems to be working well for both of us.

I plan and prepare dinners at home, set the table, serve the food, dress and salt and sauce whats needs dressing, salting, and saucing. I turn on the music we always have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up, sometimes Gregory will dry, I put things away, wipe and "daily spray" the granite counter.

He will ask, "Can we have a little something?" referring to watching a saved TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD controls. I make the popcorn or cut up some fruit to have during intermission. After watching a DVD, I put it back in its envelope returning it to sender.

I select an assortment of chocolates for him to have at bedtime. He loves his chocolates! I suggest when it is time to take a shower. I put out new towels when needed. I point out toothbrush and toothpaste when he gets confused over their use or location. I remind him to put on body lotion and help with the parts he cannot reach. I apply the cortisone treated tape to a few areas on his hand and leg that have begun to show psoriasis.

We turn down the bed together after I have brought our water glasses in from the TV room and put his nighttime meds in a small bowl on his night table as well as putting tomorrows out on the kitchen counter. I pull down the shades, turn off the lights, check the thermostat, make sure the front door is locked, and set the alarm (to wake me in the event of his wandering in the middle of the night.)

We read for a while and then lights out. Sometimes he can figure out how "on/off" works and other times I have to pop out of my side of the bed to go over and turn off his lights. The nice ending to every night is that we fall asleep together holding hands.

Of a day, bills are received, reviewed, and paid. Mail is collected, sorted, and handled. Same with e-mail. Birthdays are remembered as are important anniversaries of family and friends. Great nieces and nephews and God-Children are gifted on their birthdays, at Christmas, on graduation, at confirmation, when bar (or bat) mitzvahed, and eventually will also be gifted if they choose to marry and have children.

Household equipment is maintained, serviced, repaired. Walls are washed, erased, or touched up with paint. Clocks, thermostats, and timers set. Laundry sorted, washed, dryed, folded (sometimes Gregogry helps with the folding but I have to double check because he mixes up the variously sized underwear and sox.) Our housekeeper is instructed, directed, and at times corrected (we are grateful for her help.)

Refrigerator, pantry, and larder are stocked and a running list created so everything needed is remembered. When one thing is used up, another is in waiting, and when taken off the shelf has its name added to the running shopping list. Meals are planned executed and eaten. Dishes are set, cleared, washed, and stored.

Friends are e-mailed, telephoned, chatted with, entertained, joined for dinners out. Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food purchased and prepared, buffets set, food replenished, drinks poured, dessert served, clean up accomplished. When we get together with friends, I tell my stories and I tell Gregory's stories. He enjoys hearing his stories told since he cannot manipulate the words to tell them himself.

A pair of reading glasses has been located in each room, labeled for ease of redistribution when Gregory inadvertently looses or moves them around, and new bedtime books selected when he needs a new one.

Doctor appointments are made, symptoms checked out, lotions applied, cuts covered, bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist appointments made, driven to. Information is discussed with doctor, results listened to, actions for the future remembered and taken as needed.

Again, the purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment.

•  •  •  •  •

When he wonders about later today or tomorrow, he asks as well as he can (language difficulties considered,) and I tell him again our plans. He will reply with "Oh Goodie" or the like. Often he asks again or is surprised when the plans take place. This periodic wondering seems to be enough for him when it comes to regarding the future.

The past comes up now and then. It is a little more complicated as usually it causes a guessing game about what he is trying to remember. After thirty five years of living with and knowing him, we usually are successful in remembering. Sometimes, not!

Perhaps my success is that I have been able to create for Gregory a life in which he can truly live in the moment in which his now and his world are all that matter. The problems and confusion of dealing with Alzheimer's Disease/Dementia arise when I ask him to live in my world or our world. Sometimes he tries to live in our world and then stumbles, feels confused, and sometimes gets frustrated when he realizes that he is no longer able to do so. I am continuing to learn how to avoid this but am not always successful. I am continuing to learn how to live in his world but am not always successful.

Things he knew how to do yesterday, he does not necessarily know today, and may or may not remember tomorrow. I never know what to say or not say, to ask or not ask, to wonder or not wonder. I never know if he understands what I mean when I ask him to help me with something. Using words like above, below, in, out, over, under, etc are a crap shoot. As mentioned in a previous post, I do not know which is worse: when he doesn't understand something or when he thinks he understands something. 

Life continues to be a thin, thin line between trying as much as possible to live our life as normally as possible ... or better ...  to help him live his life as it is normal to him. Life continues to be a thin, thin line between treating him like a five year old while at the same time respecting him as the 64 year old adult he is. He senses the difference and when I am able to do so successfully he doesn't mind. When I am a little impatient, he gets a little short with me. Can you blame him?

Every night before he goes to bed, he recites aloud the three words he read in a poem and had me print on a post it to put on the side of his night table drawer: Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit myself to being as good of a caregiver partner as I possibly can be.

What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!

The Case of the Confused Underwear

Last night Gregory laid out his morning sport pants and shirt but forgot about the underwear. I reminded him but my language (undershirt/underpants) did not help so I told him we would take care of it in the morning. I knew I would be in for a "fun filled" morning but I was too tired to manage the underwear right then.

Sure enough when I woke, he was in his morning sport clothes but knew something was wrong. Without having to be asked I said, "You need underpants and an undershirt." Immediately he realized what was needed so he returned to the closet where he got out a pair of underpants and took off his sport shirt. Did you catch the subtlety of what happened?

Next, he attempted to put on his underpants over the sport pants, stopped foot in mid air and realized something was wrong and stopped. He looked at the under pants to make sure the were facing the correct directions (i.e. fly in the front?) and tried again, sport pants still on. He did this approximately six times. FInally he came into the bedroom, underpants in hand.

He knew I was available but didn't ask for help so I kept quiet. He tried the "underpants over sport pants" routine again several times and stopped. He put the underpants on the floor and said aloud to himself, "Just put them on. Just put them on."

Then it came clear to him (I could see the Ah-Ha!) and he took off his sport pants, put on his underpants (backwards but corrected with my comment,) then put on his sport pants ... all in the correct order. He was amazed that it had been so confusing and so obvious.

With a reminder that he still needed to put on an undershirt, he was able to follow through without any complications. In the past I would have jumped in and given instructions. This time, although painful probably for both of us, for the most part I kept quiet. I had to weigh his frustrations against his finally asking for help, against when I needed to intervene. Not an easy job.