FOR GREGORY

Periodically I will add posts here if the sources provide additioanl informaiton on how to think about and deal with Dementia/ Alzheimer's Disease.

PLEASE NOTE:


SCROLL DOWN FOR TEXT and BIBLIOGRAPHY from DAI WEBINAR 2/22-23/2017. You can also find this information on my website: www.horvich.com


Even though this blog is now dormant (see info below) there are many useful, insightful posts. Scroll back from the end or forward from the beginning. My guess is that you could spend a lot of time here and maybe learn or experience a thing or two about living with and loving someone with Dementia/Alzheimer's or maybe come away with the feeling that "you are not alone" in YOUR work with the same!


• • • • •


THIS WAS THE FINAL POST TO THIS SITE BEFORE IT WENT DORMANT.


Happy New Year 2016. With a new year comes new beginnings and sometimes endings. If I am personally progressing and if I am doing a good job in my grieving Gregory's death; if I have been able to learn my lessons in living and loving someone diagnosed with Dementia/ Alzheimer's; if I am to get on with my life ... I need to bring this Alzheimer's blog to an end since my writing has been dealing less with Dementia/ Alzheimer's and more with life after Dementia/ Alzheimer's.


Of course, I will always continue to work for and support fair treatment on behalf of people with Dementia/ Alzheimer's and may post here from time to time. Also, there are many wonderful posts here through which you may browse.


With this change, I will continue and reinvigorate my "michael a. horvich writes" blog which deals with grieving Gregory's death, life lessons, personal experiences, observations, memoirs, dreams, and humor in essay and poetry, as well as an attempt now and then at sharing a piece of fiction.


Please follow me there by clicking http://mhorvich.blogspot.com or click the link located on the right side of this page.


Finally, COMMENTS are always important to me and you can still comment on the posts on this blog! CLICK "Comments" and sign in or use "Anonymous." Leave your name or initials if you wish so I'll know it's you? Check the "Notify Me" box to see my reply to you.



Wednesday, December 31, 2014

Happy


Happy New Year

Dear Readers and Followers,

This from http://www.dailyom.com (opens in a new window.)

I usually do not put much thought into horoscope readings but this one seems so very fitting for the New Year that I wanted to share it with you today. It seems to have hit "my nail on the head!"

One of the ways I was able to get through this Christmas and New Year's season, the first after 40 years without Gregory being home with me, was to think about what our life, his and mine, was like last year at this time.

To say the least, it was horrible. Gregory was having a harder and harder time coping with his world and I was having more and more difficulty coping with Gregory in his world and trying to provide any sense of "normalcy" and routine for him.

It was very difficult trying to live in his world with him while still being part of my own world, and the two were becoming more and more difficult to reconcile.

On beginning the new year, we are both in very good places both physically and mentally. Gregory seems to enjoy his new home. his new family, his new community at The Lieberman Center and I have settled into living on my own.

Being with him every day gives me great pleasure and he continues to be pleased to see me. Manny provides such wonderful attention to Gregory when I am not there and this provides me with great peace of mind. The Lieberman Center provides respectful, thoughtful, caring attention to all of Gregory's needs.

Happy New Year. Thanks for being part of my "reading/sharing public." I do not know who most of you are and that does not matter. What matters is that somehow, what I write helps you keep up with Gregory and my journey and possibly helps you with yours. I appreciate you!



Fondly,
Michael





December 31, 2014
Settling into Life
Aries Daily HoroscopeYour thoughts will likely turn to topics related to health and home today. Any worry you might have felt in the past regarding your professional or personal prospects may disappear as you begin to recognize that you have been blessed with material and emotional security. You may feel particular self-reliant and eager to take on new tasks related to both your survival and your personal growth. Since you likely believe wholeheartedly that you are capable of successfully seeing to your well-being and that of your loved ones, you may spend less time today contemplating potential pitfalls and more time enjoying your ongoing efforts to build a comfortable, nurturing, and serene life.

When we feel secure, we are more apt to really immerse ourselves in those little details of our lives that make simply existing more enjoyable and enable us to engender our potential more fully than ever before. Since we can settle in to our lives without fearing that chaos is waiting for us just around the bend, we are able to concentrate on improving our overall level of comfort through the choices we make at home and at work. Mental energy once devoted to worry is redirected and can be applied to any number of more thoughtful recreational and productive pursuits. Our lives become ours once again as we grow to understand that we are the arbiters of our destiny and are not at the mercy of circumstance. The security you feel today will form the foundation upon which you truly thrive. 

Tuesday, December 30, 2014

Flu Season II

An update. Gregory's fever finally broke this morning (without a trip to ER, thank you.) He is feeling much better as you will see in Manny's comments at the end of this post.

Meanwhile I had a talk with Lieberman's Fifth Floor head nurse director about Hospice. We had talked previously and she suggested that it is never too soon to get Hospice set up as there are many side benefits, some of which I will share at a later date.

Gregory and I have long been familiar with Hospice ever since he took training some 30 years ago and actually helped care for two people before he found a full time job and did not have time to volunteer.

He would help the caregiver(s) clean the house, go grocery shopping, help with cooking, or just sit will the ill family member so the caregiver could run errands, get away, or hide out and nap in the other bedroom.

Midwest Hospice has as it's mission: We support he whole person - body, mind, and spirit, with truly innovative world-class palliative care, hospice, and grief support. Giving you your best day, today! Imagine care differently!

In the past, Hospice was involved during the last week or month of a person's life to help them die comfortably and gracefully and to support the family as well. Now the services and time provided by Hospice has broadened.

After facing my decision to NOT send Gregory to the ER, as a staff doctor had recommended, I decided that this was a head's up to get Hospice going for Gregory. It is a difficult decision if only because it admits and accepts that he will die sooner rather than later.

Intellectually I accept this easily and will be able to make appropriate decisions as I am needed to. Emotionally is another story but I do not have to deal with that now as G is still fairly healthy and who knows when death will announce itself. No use in worrying about that which one cannot control.

Actually I feel a level of power and control over my life, Gregory's life, and over the situation having been able to make this decision. Hospice will provide needed services now and will be there when I need them the most at a later date. By then they will know me and know Gregory and will be part of our "family."

Meanwhile on a lighter note, here is verbatim, Manny's report on how Gregory is doing today as taken from his texts to me. Manny has a wicked sense of humor as demonstrated below.

Manny:
Greg ate full lunch n took  liquids normal amount ... awake all the time and serenely talking ... had a big fecal explosion at 2:45pm eroding all demonic plaques in his stommigo. 

Michael:
Your comments made me laugh out loud LOL. Thanks for the update.

Manny:
I mean it ... lol ... Ur welcome ... Y pleasure

Michael:
I can imagine that you do mean it! Just glad I wasn’t on the receiving end. And stinko! Did Gregory get the giggles?

Manny:
Smelled fantastic ... my spirit voluntarily transported to other realm

Michael:
Your spirit had no where else to go ...

Manny:
What do you expect with the lava n boulders ... browned by demonic possessions. I sprayed lavender room deodorant ... opened the window a short time ... didn't help!

Michael:
K and TKS

Manny:
K

Thoughts on End of LIfe II

December 2014

To Lieberman Center Memory Care Facility Fifth Floor Nurses Office,

I am writing this letter to inform you of my directives in the care of Gregory L. Maire, my life partner/significant other for whom I hold Power of Attorney for Health Care matters.

It is difficult to know how detailed or how general to be but rather I will communicate the general idea of our desires and my medical decision motivations as discussed between Gregory and myself many years ago when he was capable of making such decisions for himself.

Gregory and I agreed that there would be no heroics, no recitation, no life prolonging activities administered. My desire is that Gregory be kept comfortable, vitals monitored, conditions reported to me if and as they change. Unnecessary trips to the emergency room would only serve to upset, agitate, and confuse Gregory and therefore should be avoided in most cases.

If a fall or physical injury takes place and the machinery and/or skills of an emergency room are necessary, for example setting a broken bone, stitching a cut, or insuring no neck injury took place, I will allow myself to make that decision in the affirmative after consulting with Lieberman nurses and doctors.

If events like a heart attack, stroke, seizure, Pneumonia, or other events in which death seems imminent, Gregory is to kept comfortable at Lieberman and be allowed to peacefully pass into his next life. I should be notified as soon as possible so I may be at his side to hold his hand and help comfort him.

Nursing staff and doctor recommendations will be carefully considered and respected but final decisions will remain with me, Michael A. Horvich, Gregory’s POA. In Gregory’s current state, the inevitability of death is a given and I would not want to inadvertently or ignorantly prolong his life.

In the event that my decisions create medical complications and/or death, I will not hold Lieberman medical or professional staff responsible.

Thank you for following these directives and for the wonderfully protective, helpful, creative way in which you have and continue to care for my beloved.

Fondly,


Michael A. Horvich, 

Power of Attorney for Gregory L. Maire

Monday, December 29, 2014

Blossoming

Under Manny's tutelage, old plants continue to flower. In Manny's own way, he does this for Gregory as well, in Gregory's own way.





Flu Season

Even though Gregory had his flu shot, and me mine, we are both under the weather.

Mine started on Christmas Day.


Not sure when G's started.


Mine: fever 101+, cough, congestion, sinus burning, short breath, bloated, minor ache, chest pain, sleeping, dizzy.

Gregory's: according to head floor nurse, fever and chills. He will stay in bed all day today and have meals in room.

I have stayed in bed and not visited Lieberman since the day after Christmas.

Floor nurse informed me of Gregory's condition, that the doctor would visit again today, that on assisted living floors 6 and 7 they have begun quarantineing, and that everyone on 5 has received the Tamiflu Medicine. 

I have a call into my doctor and have Isaac around to help if needed.

I asked Manny to come in earlier and stay later during Gregory's illness.

The difference is that I can communicate my aches and pains and needs while Gregory cannot. I wonder if the flu is worse when you can gripe about it or when you don't know the difference, just that you don't feel right?

I am happy that Manny can spend more time with him.

Sunday, December 28, 2014

Thoughts on End of LIfe

Writing this is no easy task. Based on having seen Lieberman residents rushed to the hospital in an ambulance, I began wondering under what conditions is this necessary?

While Gregory was still sentient, he and I decided that we wanted to be cremated, not buried. We also decided in the event of stroke, heart attack, catastrophic illness, etc ... "no heroics," "no resuscitation," "pull the plug" if there is one if quality of life is not available.

But how does one decide on quality of life (QOL?) Gregory's QOL today is very low compared to before the Alzheimer's, but there still is quality! He is still enjoying his narrow life, feels safe in his new community at Lieberman, is eating well and enjoying the food, laughs and gets silly, is communicating somewhat if you know what to listen for, sleeps well, likes listening to music and watching TV, is healthy and not in pain.

So for now, lets leave him "plugged in" since he is plugged in by himself and not ill or on a machine or suffering. But with Alzheimer's it will get worse. Much worse unless death takes him sooner rather than later. Mental/ emotional duress and pain is much more difficult to measure but I believe I will know when that time comes and at least we will be able to control it with medication.

Being in charge of making decisions like this for another person is overwhelming. My decisions are and will always be made with love and only with Gregory in mind, not any suffering I may experience as he fails. But none-the-less deciding that a person should end their days in a drugged stupor is difficult. Luckily the nursing staff at Lieberman is thoughtful and well informed and have advised me well so far.

Gregory's latest round of increased medication, is Risperdal. It is a antipsychotic medicine that works by changing the effects of chemicals in the brain and is used to treat schizophrenia and symptoms of bipolar disorder as well as irritability in children with autism. While it is not approved for use in conditions related to dementia, like many other drugs, it serves dual purposes even though dementia was not what was tested for the drugs approval.

Gregory was beginning to be uncontrollably combative, irritated, frustrated, angry, and was unable to sleep well. The Risperdal, as I was warned, caused him to be lethargic and unavailable emotionally/ socially for two to three weeks until the dose was balanced and his system adjusted.

He is now back to what I call his "former diminished self." While the drug did not bring back any abilities it did calm down most of the negative ones and that is good.

Next I need to put into writing my directions to the Lieberman staff as to when Gregory might be "rushed" to the hospital. Holding, with Gregory's permission long ago, the rights to Power of Attorney for Health (and Finances,) I am able to make life and death decisions on his behalf.

What I do not want to do is prolong his life if he is on his way home! I like that expression as it makes me feel like we came from somewhere and we will return somewhere even though I might not be able to understand under what circumstances that might be.

I especially do not want to prolong his life inadvertently, under duress of his illness, or because of the "best actions" of doctors, hospital, and medical staff.

If Gregory is working his way towards dying, I only want him to be comfortable, free of pain, and I will sit there and hold his hand or lie down next to him and snuggle until the end.

I need to think about these last things and put my end of life directions into writing. I also am aware that what I put into writing for Gregory should also be used in the event of my needing them. That's the next task.


Wednesday, December 24, 2014

Santa at Lieberman

This is the first time in the history of Lieberman that a cross-over entertainment has taken place to include those at Lieberman who are not Jewish.

Santa himself has little about him to do with Christmas except that the joy he brings dates back to when most of the residents at Lieberman, Jewish and non-Jewish, were children and/or celebrating the holidays with their children and grand-children.

Next, why shouldn't Lieberman honor those of other religions while retaining the Jewish heritage. And they did that today.

I do have to admit that when I arrived at 10:10, ringing my bell, in full Santa costume and began my "schtick," it was like playing to an audience at a Catskills Resort with the wrong set of jokes and bombing ... yet having to continue performing for an hour.

Being quite old and functioning at a lower level than many assisted living facilities, the energy and volume of Christmas Carole singing was fairly low. Friends Jan and Cheryl and God Son Isaac helped bring up the pace and level of participation.

After my opening comments, I spent time with each resident: holding their hand, asking questions, smiling, clowning around. People enjoyed my antics and posed for photos that were taken by Jan.

Several of the residents knew me from the Sunday Entertainments and gave kisses. At the end of the show everyone received a bag of silver coin chocolate. One resident prior to my passing them out was brazen enough to ask, "Did you bring gifts?"

Besides cheering up approximately 12 residents and 6 or 8 helpers, many of the staff wanted to take a photo with Santa to send it to their children, nieces, or nephews.

Three highlights: two positive, one negative, in all wonderful!

A fairly old and fairly ill black woman was in bed, unable to come to the party. Her helper asked me to come into the room to greet her. Frail, thin, bent over. Yet so excited that Santa had come to visit that she could barely contain herself, repeating, "Santa, Santa, Santa." I kneeled down next to her bed so we could pose for a photo and I asked her, "Have you been a good girl?" Her reply was, "Yes I have been very good so far this morning!"

One woman took my hand sincerely and said, "Bless you Father Christmas!" Wow!

The son of one resident, himself quite old, asked me if I was Jewish. I told him I was. In an aggravated tone he asked me why was I doing this then since Lieberman is a Jewish place. I told him it was for those people at Lieberman who were not Jewish. He replied that 90% of the residents are Jewish. I finished by saying, "Then I did it for those 10% who are not and who are entitled to celebrate their religion!" He looked away with disgust.













Jan's BLOG

Today I "played" Santa at The Lieberman Center. I will write about it later but here is a link to what my friend Jan wrote. She and her son (my God Son) and friend Cheryl joined the festivities and Jan photo documented it.

https://connectere.wordpress.com/2014/12/24/michael-is-santa/

Tuesday, December 23, 2014

Merry Christmas 2014

If you are truly loved and truly love in return, nothing else matters no matter what happens or changes or disappears! Merry Christmas Gregory my love.


Happy Chanukah Party

Today at 1:30, Lieberman 5th floor held its annual Chanukah party and also celebrated the centennial of four of our residents. Everyone convened in the dining room with some tables pushed back, Chanukah decorations a plenty hung on the walls, and beautiful fresh flower center-pieces on the white table clothed tables still in place.

Barry was at the electronic keyboard playing a variety of slow, up tempo, popular, Jewish, and Chanukah pieces. Residents and staff clapped and sang along and even danced. At one point I felt a tap on my shoulder and turned to find one of the more ambulatory residents requesting me to dance with her.  We "cut the rug" calmly.

Potatoes Pancakes (Latkes) with sour cream and apple sauce and apple juice were served.

The joy in the room was easy to feel and for me it was mingled with sorrow that the clock could not be turned back, that the disease could not be reversed, and that this joy could not be felt by all, all of the time. But if one could stay in the here and now, it was a beautiful, joyful sight to behold. 

YUMMY!

Most of the 40 residents attended the party. Faces are blurred for privacy.

Gregory really enjoyed the electric keyboard.

I really enjoyed the cute performer:-)

Here are the four Centenarians being presented
with a certificate of honor by our Social Worker Hannah.

Saturday, December 20, 2014

The Jewish Santa

The JEWISH SANTA will be spreading holiday cheer at The Lieberman Center Christmas Caroling Event on the sixth floor on Wednesday, December 24 from 10:00-11:00 and again on the fifth floor from 11:00-11:30.







Thursday, December 18, 2014

Change of Attitude

Through her plaque coated, uneven, yellow teeth she hissed. "Come over here."

I stopped and leaned over to show her I was listening.

"I want to get out of here!" she said meaning she was done with dinner and wanted to leave the dining room.

I gave my usual reply to situations like this, "The helper will come to get you next. You have to be patient."

She reached up, grabbed my beard, and with each word gave a fairly strong pull, "That - is - what -  they - always - say!" And she let go.

"They have you on the list and won't forget you," my usual reply, but this time amused at her approach.

"I know. I will be patient. Thank you for your help." she smiled through her plaque coated, uneven, yellow teeth. This time without a hiss but with love.

Wednesday, December 17, 2014

A Christmas Invitation

I was invited to spend Christmas Eve with friends a week or so ago and they sent an e-mail reminding me that if I change my mind last minute, I am welcome to join them. They are good, loyal friends. The bowl pictured was a gift by V who is a sculptor. It is hammered and stained aluminum. I filled the bowl with vintage Santas.

I wrote this reply to their reminder invitation:

K & V,
I appreciate your stick-to-it-tive-ness and I am sure it would be a wonderful time. I will be spending Christmas Eve with Gregory at Lieberman. I'll have dinner with him in the dining room and afterwards we'll open presents and watch the DVD "A Christmas Carol." 

I'll bring some cookies I have baked and we will have hot chocolate: Gregory's Great Grandma Barbara's German Christmas Cookies and My Mom Adeline's Walnut Balls.

It will be much how Gregory and I always used to spend Christmas Eve but under different circumstances. I am doing much better this holiday season than I thought I would.

In thinking about what a mess life was last year at this time, I know I have much for which to be grateful and I am unable to be sad! 

I will still try not to dwell too much on the past good and enjoy the present good.

Lots of love,
Michael



OT/PT Video

What is lovely about this video is the communication between Gregory and Pam, the Occupational Therapist. When he began therapy this round, he would not let her do much. Now he trusts her completely.

video

Tuesday, December 16, 2014

Statistics

michael a. horvich cares about alzheimer's
958 posts
42,000 hits

Thanks loyal readers!


Music & Alzheimer's

This came across my facebook page: God's Love: Naomi Feil, a Jewish woman, sings Christian hymns for Gladys, who has Alzheimer's and was unable to speak. Watch what happens at the end, when Mrs. Feil opens her heart and gives Ms. Gladys what she needs so deeply.

CLICK HERE FOR VIDEO: Music & Alzheimer's


More Than Ever

My love for this man continues to grow and grow. As Gregory's abilities continue to disappear, I am able to find more and more to love about him.

One thing I have always done since Gregory entered Lieberman Memory Care, is to be very open about our relationship and about my love for him.

I feel no embarrassment at hugging or kissing him when I want to or when he needs me to, even if we are in a large group of people. If he cries with joy or frustration, I feel no problem in hugging him and rocking with him.

Our relationship, same sex relationship, has been accepted by Lieberman administration and staff as well as by residents and their families on Gregory's and other floors.

People will ask about our relationship and I will proudly tell them Gregory is my life partner, my significant other, my boyfriend for over forty years now. Usually they gasp in amazement and say something like, "Most marriages don't last that long."

If the person is not aware, I will not go into any detail. If the person asks what I mean, I will go into my "gay" or "married" etc description.

I am tickled when people, family of residents or residents, ask if Gregory is my son or if I am his son.

Many people, both staff and family, have commented on how lucky Gregory is to have me and I will reply, "I am lucky to have him."

People will comment on what a wonderful love we have for each other, several have mentioned never having seen such a great love, and others have said they only wish they will love someone as much in their life.

When I hear this, my first feeling is one of embarrassment due to the attention and the visibility of our love, on the other hand I work at not holding back on the love when with Gregory, so the next feeling is one of confirmation.

I guess I just love this man and am a little amazed when others are amazed. It is what we do. It is who we are. That's all. But I guess that's a lot!






Monday, December 15, 2014

OT/PT

I always forget the difference between OT and PT so I looked it up.

OT=Occupational Therapy=a form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. 

PT=Physical Therapy=the treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery

So generally speaking, OT has to do with getting back life skills and PT has to do with helping injury or discomfort.

I have noticed that whenever Gregory is "off" as in not feeling well, having a cold or flu, having his meds out of balance, having emotional highs or lows ... his neck is the first to go. It lists to the right with chin to chest and looks very uncomfortable and painful.

When you try to help him move his head back to "normal" he winces and/or "ouches." So both Manny and I give Gregory lots of back rubs and use pillows to help support his head when watching TV or eating or whatever.

I made this a priority because I know that good posture has always been important to Gregory and having back/neck problems myself, I know how painful having your body out of alignment can be.

Medicare has strict guidelines for when they will pay for OT/PT and only for a certain amount of time and if the patient shows continued improvement. Gregory has had several sessions since last January which eventually expired for one reason or another.

Periodically I approach the head nurse and ask her to ask for a re-evaluation by the OT/PT staff to see if therapy would be right again for Gregory and if he again meets Medicare requirements. 

A few weeks ago, he once again qualified and after three sessions a week, his neck has been looking much better. 

Following are a few videos that Manny took with his iPhone (a gift from Gregory and me) of today's treatment. You can see how comfortable and relaxed Gregory gets during these treatments. 

His therapist, Pam, is quite wonderful and Gregory has come to trust her with electro stimulation, massage, and using special support tapes on his neck.




Pam asks, "Does it feel good?"
Gregory replies, "Yes. I love it!"
video


Gregory is resting after electro-stir, massage, and heat pack.
Manny is singing gently in the background.
video



Sunday, December 14, 2014

Entertainment Sundays at Lieberman

Todays classical piano concert, performed by Maralgua “Maggie” Darjaa, was a hit with the over 60 residents who attended "Entertainment Sundays at Lieberman." To louder than usual applause, shouts of YES! and BRAVA!, and a standing ovation by those who were able,  the audience really appreciated Maralgua’s well executed pieces by Chopin, Beethoven, and Mozart.

Gregory was especially moved as Chopin is his favorite and while Gregory's abilities are gone, he used to play very athletic classic pieces on our Grand Piano. When it was time to sell the piano because he could no longer play it, his comment was, “Well I can always relive these days by listening to our CD’s.” That is how calm and accepting Gregory has always been.



One photo shows Gregory with a tear running down his cheek. He was crying with joy at hearing one of his favorite pieces. Later in the concert, I placed his hands around my wrists and pretended to play the piece we were listening to. I know enough about piano to know when my right hand is hitting the higher notes and my left hand hitting the lower notes. Wiggling my fingers and moving left to right, I also kept rhythm to the piece as it was played. Gregory seemed to enjoy this experience and when I looked down at his feet, it looked like he was working the pedals of his piano. Afterwords he thanked me and it actually felt like he thought he had played the piece. The truth? The reality? Doesn't matter. We both had a "moment."









Thursday, December 11, 2014

Special Luncheon

Every month, Lieberman has a special luncheon for residents. On a rotating basis, they invite two or three from each floor, allow residents to meet each other and mingle, and provide a special menu lunch.

The Special Luncheon takes place in the first floor area called "The Nosh" which is just off the main Great Room, Living Room, Library.

The special treatment, quiet atmosphere away from the floor's dining room, and the delicious food (Lieberman's food is usually delicious) made for a lovely afternoon treat. 

We had chicken soup with kreplach, corned beef in a horseradish sauce, oven roasted red potatoes, and grilled vegetables with chocolate cream pie for dessert. We had a great time!







Saturday, December 6, 2014

Two Responses

Two responses to my previous post.

I love you Michael Horvich. 
A blink
A shimmer
A flash of recognition 
S

• • • • •

Here’s what I think. You, once again, did a wonderful thing for your beloved.

I respectfully disagree that you made Gregory feel uncomfortable or unsafe. If you “made” him anything, you made him tired. That, & multiple poops, and the time of day and the medication and his condition…but I think you recognize that.

And yet in the evening you still had that wonderful exchange. He knows your love. 

I was struck when reading the entries back & forth how Gregory’s “family & friends” are a new group of people now. The “family & friends” who attended in  the evening are from his past life. I don’t know how much they touch his life now. The joy came earlier, from the people who surround him now. You, of course, straddle both worlds and I think that made it even harder for you last night. 

Lovingly,

P

Friday, December 5, 2014

Gregory Maire: Studies in Color and Form: Part 2 The Failure


Many of our wonderful family of friends were able to attend the 6:00 Opening Reception for Gregory's Art Show. The invitation was low key and I understood that the timing was not easy for a lot of people.

That said, thank you for being there or R.S.V.P.ing your not being able to join us: Pat, Isaac, Cheryl, Emily, Kathleen, Vic, Linda, George, Corinne, Nancy, Susan, Jan, Jake, Roger, Marc, Alan, Nancy, Dan, David, Danny. Hope I didn't forget anyone.

The day event at 2:00 was quite successful as you read in the previous post. Gregory was quite exhausted by 3:00 or 3:30 and went up to his room with Manny to take a nap and then have dinner from 4:30 until 5:30.

In anticipation for the 6:00 reception, Manny made sure that Gregory got changed and after he was changed he peed and pooped again and had to be changed again. This is not an easy task for Gregory or those involved.

It takes putting a sling around and under him, lifting him out of his wheel chair in this dinosaur type machine, swinging him over to the bed, lowering him onto the bed, removing the sling, rolling him from side to side to take away the soiled clothing, cleaning him up, and putting on new clothing. 

Gregory is unable to assist so when the aides move him around, no matter how gently, Gregory is uncomfortable, possible in a little pain, and while I am not sure if he is embarrassed anymore at not being able to toilet himself, perhaps this figures into the experience. 

Not sure at what point he "messed again" but having to go through even part of the ordeal again was not easy on Gregory or the aides.

By the time Gregory got down to the lobby all of his guests had arrived, hung up their coats, and were looking at the artwork. Gregory being exhausted, and possibly overwhelmed, was "not present." He sat nobly in his wheel chair but his eyes were closed. 

I tried "waking him up" if he was sleeping but I think that he just didn't want to open his eyes. I call this "My Seven Year Old Stubborn Little Boy Syndrome." 

Most likely he was so overwhelmed from the events of the first reception, then eating dinner and having to go through two "changes," that this was his way of just not wanting any more stimulation.

A number of people came up to say hello, to pet him, to try to get a reaction ... but none took place. I tried to get him to open his eyes several time ... but no go.

Next, as I was hugging him, I lost it. I stifled a loud sob, but not stifled soon enough for the group of friends not to hear. I cried into Gregory's neck/shoulder until I could gain my composure, took deep breath, and came up for air. I understand my eyes were not the only wet ones in the crowd.

At this point Gregory did open his eyes. I leaned in towards him and in my usual slow and carefully pronounced way I said, "I love you very much." He looked at me and replied, "I know."

Next I continued, "And you make me very very happy" to which he replied, "I know."

Then he looked me directly in my eyes and said loudly and clearly, "Thank You!" He closed his eyes and disappeared for the rest of the reception.

Enough said? I learned many lessons and had several insights. So calling the reception a "failure" is not really true.

First, I had hoped so much that he would be present for those people we value most in the world, our friends. Next I realized that I was disappointed in his behavior (erroneous) and embarrassed (erroneous) in front of our friends.

I also realized that this reception was another one of my attempts at making it seem, for Gregory and me, like our life is "normal" when in reality it is NOT! My expectations for Gregory had inadvertently caused him to become uncomfortable, not feel safe, and to withdraw.

I am not sorry about the experience because it is always a risk when trying to provide Gregory with "joy" and "meaning," I would not want to settle for less if I did not have to, and I was able to learn from it.

I need to be more aware of how much he will be able to take and when enough stimulation is enough. I need to keep in mind his comfort zone, not mine. 

While I felt disappointment and embarrassment, those were emotions triggered by old learning and no longer really a part of me, Gregory and my situation, and definitely not true triggers or true emotions.

I know that our family of friends were there to support both Gregory and me and I appreciate that. I know that Gregory was aware of the love and support that was in the room for him.

In the end, the most important part was Gregory letting me know he knows I love him, knows he makes me happy, and thanked me for letting him know that. That is all that really matters (and the new lessons hopefully not to be repeated next time.)


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.

Wednesday, December 3, 2014

Gregory's Art Show

So excited about Gregory's Art Show tomorrow at Lieberman in the first floor lobby. The show of 26 pieces was hung today and tomorrow there are two receptions: 2:00-3:00 and 6:00-6:30. Refreshment are provided by Lieberman. Here is a sneak preview for those of you who will be attending and a this is what it looked like for those of you who cannot attend.