Reply to the Reply

N,

Thanks so much for your thoughtful, long e-mail. Your valiant journey with your Mom’s Alzheimer’s and your Dad’s battle with heart problems is very apparent through your comments. It is amazing what love brings out in us and how we can feel such joy because of it. My love to you on your mom and dad’s passing.

I agree that going through these journeys with you life partner love is different than going through it with your parents but it never is easy no matter which. I consider myself fortunate for the abilities I have gained and been able to demonstrate with Gregory and my journey through Alzheimer’s and recognize the many life gifts both the disease and Gregory has given us! You will find that my blog is honest and raw but also uplifting. Feel free to share it with whomever you think might benefit.

Faith aside, I appreciate you holding us in your thoughts. 

Fondly,

Michael

Reply from a Reader

Hi,

I saw your post regarding the Best Friends video from DailyOm.  I know you don't know me and I'm sure you have plenty of support but a book that really helped me during my mother's illness was "Making Rounds with Oscar."  I've shared it with several people suffering the terribly devastating disease that is Alzheimers.  It is a tender story about how some of us have walked the hard road of this disease.

I also read a little bit on your blog about end of life and the difficult decision to let a body shutdown and when is the quality of life gone and here's what I've learned.  After 51 years of marriage, my mother passed away last February two weeks after their anniversary. My father had cared for her in her dementia for longer than I even know. I would say the quality was probably gone the last four weeks.  The last two break my heart thinking about them even now.

This past summer, my formerly vibrant father was diagnosed and then treated for severe blockages in four vessels in his heart.  He went home twice after the surgery but he never recovered.  The third time we went home, it was on hospice.  That was late August.  I stayed with him every day.  He was chair-bound.  A once shy and very proud gentleman, he needed help with everything except eating. He never complained, was rarely cranky, and always said "thank you" for the even the smallest things.

I asked myself many times over those last months why was he suffering and where was the quality of his life.  And very near the end when I was grappling with what I couldn't possibly control, he awoke after almost a full day of unconsciousness and stretched like a sleepy little boy.  I wouldn't have missed that stretch for anything in the world...and then he ate a big breakfast. And so, though the coming days were hard, I thought to myself, "there's still quality."  Still a connection.

I am not a proponent of some of the heroic things we try to do to save the people we love or the things the medical world throws to us as treatment.  I think you have to weigh comfort over 'to what end?' but, I believe, without question, there's a plan and a path.  I think my father lived exactly the time I needed, my sister needed, our families needed, to transition us to our life without him.  He passed away on December 9th, 2014.  Tomorrow would have been Mother and Daddy's 52nd wedding anniversary.

I tell you this because I see the love in your eyes for your sweet babboo.  I don't know what it is to lose the love of your life but I know what it is to lose someone I love...two people in a very short time.  I know what it is to bear slightly more than you think you can bear.  I know what it is to be a primary caregiver and be sad and angry and exhausted and just want something so simple, it is silly.

I just wanted you to know your comment and your blog touched me.  I wish you peace on your journey and enough strength to enjoy the good moments and endure the hard ones.

I don't know what your faith is or is not but I'm going to hold a good thought for both of you and I wish you continued love on Valentine's Day and beyond.

NL

Sunday at Lieberman

Every Sunday Lieberman Center offers entertainment in the community room. Gregory always enjoys the music and sometimes even this can be seen happening: Tapping in time to the music.

Small Miracles

Most of the time Gregory has trouble controlling his hands and arms. He needs to be fed most of the time and helped with drinks. Everyone now and then, this happens and it makes me so happy to see.

Insight or Intuition? Real or Imagined? PART II

One thing I did previously was to create what I call Gregory's Memory Book in which 8x10 portrait type photographs of the people in his life are placed.

We have looked through the book only a few times with me naming each person. Sometimes I explain their relationship. Maybe with more practice he will be able to get through the entire book without loosing his focus or maybe I'll divide it into family, friends, neighbors, pets, etc.

I never mention that some of them might have passed on; like his or my mom and dad. I made the mistake of explaining to him, as we reached a pet's photograph, that the pet was dead. He got very sad and cried as if it the pet had just died and this was the first time he had gotten the news. I leaned my lesson.

We haven't looked at the Memory Book for a while and yesterday's experience (To see yesterday's post CLICK HERE. Opens in a new window.) tells me that I need to take the book out more often and go through it with Gregory.

Gregory now has a 42" flat screen TV on his dresser and I am able to hook it up to my iPhone. We use this to "FaceTime" with family and being such a large screen, Gregory is able to focus on the person with whom we are talking. It was almost impossible to do so when we used just the iPhone.

I will attempt to use the photos on my iPhone, sent to the large screen, to visit some of Gregory and my previous vacations. Since photographs of vacations are something that are always in the past it may not be too difficult for Gregory to revisit. I do not know if he will lament his inability to travel now or return to some of these sites but we will see. I don't think so.

Depending on how these go I might try revisiting some of his architecture projects photographs or other activities in which he can no longer participate like painting with Nancy Rosen or family parties.

Again, I will keep you up to date on how this progresses.

Insight or Intuition? Real or Imagined? PART I

Yesterday at Lieberman,Gregory and I were having a happy, loving interaction about nothing in particular. Communication on my part but who knows what he was receiving.

Then he stopped me by grasping my arm and tried to tell me something. Did I have insight into what he was trying to say through his broken comments or was it intuition. Was it imagined or based on my 40 years of knowing him? Based on that experience came this poem:

The Exchange

I don't want to stay, to stay.
I want to see, to see, to see.

A brief flicker of sadness in him
Then his notice of sadness in me

Followed by an apology: I am sorry. I am sorry.
Then my giving permission: Say what you have to.

Really?
Yes.

After the exchange I tried to distract by asking about the good things in our life. Perhaps his positive answers are real or perhaps they are cause/effect of my positive voice or perhaps they are my appropriately forcing the correct answers.

"You really like it here, don't you?" "Yes."
"The people are really nice, aren't they?" "Yes."
"The food is so good, isn't it?" "Yes."
"Manny takes really good care of your, doesn't he?" "Yes."
"Do you feel safe here?" "Oh Yes" (Said with a little added emphasis.)

So insight or intuition? Insight would mean closer to knowing with proof. Intuition would be understanding with heart. Either way I have had to give the experience a lot of thought.

It appears that Gregory is content in his narrow, limited, focused community and life at Lieberman. Up until now I have avoided talking about the past or even saying "I am going home" when I leave. I do not talk about "home" or "the condo" since it is no longer part of his life. I just say, "I am leaving now."

Insight or intuition? Is it fair to keep memories of the past away from Gregory, might he enjoy re-visiting them with my help, or will doing so prove to be too upsetting to him?

Reliving the past is still too upsetting to me when I compare it to the present but perhaps revisiting discrete experiences, like our time in Mexico or a trip to Paris or a party we attended, will be less painful.

Maybe it is time to help Gregory recreate his lost memories. I'll let you know what happens.

Painting III

Third time Gregory, Katharine, and I painted. Each time is a new adventure without knowing what to expect.

This time Gregory was very tired so he seemed to be even less engaged. We got him into his painting shirt, put his hands into the latex gloves, and tried to paint.

He really had a hard time moving his hands and/or arms around today. When we would suggest, "OK, paint!" his hand would twitch but he just didn't seem able to control any movement.

At one point Katharine got a Rain Stick from the other side of the art room. She turned it over a few times. The soothing sound of the seeds inside the stick, sounding like gentle rain on a metal roof, caused Gregory to open his eyes and look at the stick with wonder.

We put the stick into his hands, me controlling his left hand and Katharine controlling his right hand and we tipped the stick back and forth. Gregory continued to look at it in wonder.

At one point he tightened his hands on the stick while we still moved it up and down. Then he grabbed it on his own, put it in a vertical position, and lifted it to his mouth. He put it into his mouth, just resting there, not trying to eat it or anything.

I stared to move it away from his mouth and he distinctly told me, "Don't. Stop." So I did. He sat there with it in his mouth in what felt like a "Holy Moment." Not sure what he was feeling or thinking, but it felt magical, spiritual, important.

We asked, "Do you like the sound of the stick?" and he replied, "Yes."

"It's beautiful, isn't it?" and he replied, "Yes."

Eventually he let us remove the Rain Stick and we tried to get back to painting. While he wasn't to able to move his fingers/hands through the paint, I had the feeling that he was "painting" in his mind.

He enjoyed the session, for who knows what reasons, but he did enjoy himself and that was what counted.

Again, Katharine and I periodically glanced at each other and shared a controlled tear or two.

Painting Set-Up

Today's attempt at painting. Not too productive.

Katharine and I made most of the moves shown here.

Gregory and the Rain Stick

Katharine and Gregory and the Rain Stick

Week Two painting number one.

Week Two: painting number two.

Week Number One

Today at Lieberman

I visited Gregory early this morning and met him in the "Morning TV Area."

As I passed Lois she asked for help. My usual reply, "Sorry Lois they won't let me help, I am only a visitor here.

Her reply, which felt very knowing, "Who isn't!"

Martha and the Bay Leaf

Lunch today began with vegetable soup. Martha found a bay leaf in her soup and put it on the table. Either she knew that the bay leaf is for seasoning only or after having tried to eat it, she set it aside.

I told Martha the story about the bay leaf and my family. My mother would use two or three bay leaves in any one of a number of soups she would make. She would try to find the bay leaves and remove them before serving dinner but it wasn't always easy. And/or she didn't try too hard?

When one of the family members would find the bay leaf, mom would announce, "That means you have to wash the dishes. Who ever finds the bay leaf has to wash the dishes!"

"So," I said, "pointing to the bay leaf, Martha, you have to wash the dishes from today's lunch!"

Martha replied, laughing, "You are a card, aren't you!" We both got a good laugh.

Remember Me But Forget My Fate

While this ariaby Joyce DiDonato is in memory of Stonewall and people who have been murdered just because of who they are, it could bring tears for Gregory as well as he slowly leaves us: Remember Me But Forget My Fate!

https://www.youtube.com/watch?v=aqmpRB5Elhc#t=345

Mini-Miracles

I do not remember what we were doing but at one point, Gregory looked at me and said, "You are so nice."

Enough Said

Letter to a Friend

A friend has just made the difficult decision to find a placement for her mom who is dealing with advanced dementia.

My offer stands and if you don't get to Evanston I could meet you downtown your place of work. Your decision to have mom move to a new living situation is a good although difficult one. Difficult especially since she doesn't seem to like the idea.

One suggestion, if she is able, let her make some of the decisions like what furniture, photos, decorations etc to take and how to arrange her new space. I have found that while Gregory was not "hostile" to the new surroundings, he has come to enjoy his new room and home.

The activity going on around him, even though he cannot always fully participate, the good food, and new friends have helped him remain happy and calm. It is touching to see Gregory and Martha carrying on a conversation at dinner. They they both are enjoying it immensely but anyone listening realize that what they are saying makes no sense to others but G and M are having a great time.

Also, by his being in a safe, loving environment, the time I spend with him is free from all frustration, anger, fear, and exhaustion. I actually enjoy visiting him and the other residents have become part of my extended family. Lets get together and chat if you would like.

Painting Class II

Today Gregory painted. For the second time at Lieberman. When I approached him early morning while he was watching TV in one of the wings, he was exited to see me. I asked, "Do you want to paint today?" He perked up even more and started babbling somewhere between "Yes indeed!" and "Wonderful!" If you were standing there you may not have heard what I did but Gregory's enthusiasm definitely came through.

We went down to the art room on the second floor and were greeted by Katharine who asked, "Do you want to paint today." Again Gregory definitely indicated that he did!

We got a paint shirt onto him (not easy) and laid out the glossy paper in the tray with the tubes of paint in a row above. Then the slow, tedious, wondering part began. Will this work? Will Gregory get involved again? Will he remember how to do this? Will he be successful at pushing the paint around? Will he have a second in a row success?

A glob of paint was squeezed onto the center of the paper but Gregory did nothing. We placed a hand onto the paper with the instruction, "OK, paint!" Nothing. Katharine moved his hand around as a way of stimulating Gregory's thinking/processing. Nothing. I took his hand and used his fingers to tap, tap, tap through the paint. Nothing.

At one point Gregory leaned forward, head down, eyes closed and sat still. Katharine and I waited. After a short while we began our encouraging again. We put his hand onto the paint and moved the hand in circles, up and down, tap tap tap. Gregory joined in a little but one could not say Gregory was painting.

It was difficult to keep Gregory's posture correct, to have him focus on the paint and paper, to help him keep his eyes open, to move his fingers and/or hands.

Katharine though that some peppy music might help so she put some Latin sounding, rhythmic music on the CD player. It did seem to help and Gregory was a little more alert and a little bit more focused.

We were aware that once Gregory's hand was in or over the glob of paint, the paint disappeared from view and most likely from awareness. We played with moving the tray closer, and further, and changed the angle. It all helped: music, tray movement, placing his hand and/or fingers in a way that he could see the paint beside it rather than covering it.

Gravity helped a little but you could tell that Gregory was getting more involved. Several times during his stopped inertia, we asked, "Do you want to paint?" and he answered either "Yes" or "I am painting."

It was interesting to see Katharine process her moves with Gregory. It was interesting to see how much effort Gregory was putting into getting his arms and hands to move and processing what he was supposed to be doing with this colorful blob of paint on this piece of white paper (Description is mine. Gregory was most likely blank but now and then something would click in.)

One move that was fun and seemed to help Gregory was Katherine taking one hand and me taking Gregory's other and in grand strokes moving his through the paint using large gross motor skills in time to the Latin rhythms. Gregory seemed to enjoy this and it facilitated his processing so he could continue briefly when we let go of his hands.

It took longer to get him started this time but we spent more time in the art room and he definitely had a good time. All three of us were pleased.

Respect

Hannah made an interesting comment the other day about my involvement with the residents on Gregory's floor. "You recognize them as people and treat them like they matter." They are and they do. It is often easy to forget this when faced with the effects of Alzheimer's and time.

Blanch Sees God

Blanch approached Wanda, "I want to buy that painting!"

Wanda is a Lieberman Life Activities Director and Blanch is a resident on one of the Lieberman assisted living floors.

Gregory's paintings, from a show in the Lieberman lobby, will be up until March 1. Blanch approached Wanda about buying one of Gregory's paintings for her room and wondered how much it would cost.

The important part of buying the painting, Blanch told Wanda, is that you can clearly see God's face in that painting. Wanda studied the piece but could not see the face until Blanch pointed out the details. Now Wanda can see the face.

I am not sure if I want to see the face myself but was happy to offer Blanch a special "Resident Only Price" of $10.00 for the painting. She was overjoyed and will drop the money off at the front desk and get her painting today.

So much of life still goes on at Lieberman.

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.

Finger Painted Tears

My tears flowed like colored finger paint on glossy paper. Sounds like an interesting simile or metaphor or first line of a new poem.

Today I went to Liberman at the crack of dawn, which for me means leaving the house at 9:00. Katharine, the Lieberman Art Therapist and I scheduled a session with Gregory in the Art Lab to see what he could do with finger paints.

You are reminded that three or four years ago he picked up oil painting as a new hobby, under the mentorship of Nancy Rosen (http://www.nrosen.com.) He took to it like the proverbial fish to water (ironically he used to refer to himself as a fish who needs to be in water, thus swimming as often as he was able in the pool in our condo building.)

In the three short years he worked with Nancy he produced over 200 pieces, mostly large 25"x25" and 25"x35", and some smaller 10"x10". He had a show at the Lincolnwood Town Hall Gallery which was very well received and most recently a show at Lieberman in which most of the 26 paintings sold!

Since he moved to the Liberman Center he has continued to decline and has lost many more skills: like painting and swimming. But he doesn't seem to mind and continues to live as he always has with a calm demeanor.

I, on the other hand, was not as ready to let go of his painting. So I purchased thick primary crayons and colored pencils and tablets of paper. To no avail.

I found ergonomic crayons that you could grip with your fist and which were thick enough so as not to break under pressure. To no avail.

I discovered another type of crayon which you can "wear" on each finger. Picture cone shaped crayons into which you insert your finger. To no avail.

Still not giving up I purchased a box of tubes of finger paints and a large tray in which sits the finger painting glossy paper. Today that was put to the test.

Gregory was very pleased to see me and we greeted each other with hugs and kisses which is the usual. I told him that, "We are going to go paint. Would you like that?" He got very excited and gave me a chain of "Yes. Oh my. Wonderful. Wow."

On the way to the elevator his upbeat joy continued and I felt buoyant but also filled with a little dread that finger painting wouldn't work either. I put this feeling aside in the name of "If at first you don't succeed, try try try."

We got him into a silly painting apron and while Katharine went to look for large playtex gloves, Gregory and I reviewed the colors of the tubes of paint. He actually repeated after me for PURPLE, GREEN, and PINK but then stopped mimicking. He does that. He is good for the first few but then he "turns off."

It wasn't as hard to get him into the gloves as I thought it would be when we first began. He did not resist and that was good.

The reason we used gloves was not only because it would be easier to clean up his hands afterwards, but I remembered that when he was working with Nancy he hated it when his hands got dirty from the oil paints and she had to help him wash many times during a painting session.

At first Katharine and I demonstrated and encouraged. Then we put his hands through the motions. Then a small (LARGE) miracle took place.

He was actually focused on the sheet of paper and the blob of paint (he usually has trouble focusing but this time he was on task.) He began to move his hand around through the paint spreading it up and then down.

Next he began tapping his finger on the paper and noticed the colored design his tapping created.

He was having such a good time and he was really engaged with the process. Of course if it was you or me we would jump in at 9 or 10 on the finger painting scale while Gregory was woking at the 2 or 3 level, but he was working and that was wonderful.

Periodically we had to ask Gregory to pick up his head, or open his eyes, or refocus on the paints and paper but he really was enjoying himself and continued to be engaged for close to the entire 30 minutes.

I sobbed but didn't want to distract Gregory so turned it into a cough. I think Katharine noticed and I think she was as overjoyed as I was. We worked at this for about half an hour with pink and green and purple and blue and yellow.

When asked if he would like to paint again he definitely answered, "YES." So we have another play date next Friday. At that point I'll share some photographs of the process and the product.

Meanwhile, shed a finger paint tear or two with me at the joy of having been able to give this experience to Gregory. Celebrate Katharine for her patience and perseverance that payed of for Gregory. Thank Lieberman for being perceptive enough to recognize how important the arts are for all of their residents, even those severely at risk due to dementia.

Shining

"The end of life has its own nature, also worth our attention. I don’t say this without reckoning in the sorrow, the worry, the many diminishments. But surely it is then that a person’s character shines or glooms. " (Our World  — part memoir, part deeply moving eulogy to a departed soul mate, part celebration of their love for one another through their individual creative loves. Mary Oliver)

This is so true as I watch Gregory shine brighter than bright.

Reality

Often the truest statements make no sense if you have not come to the same conclusion by your own means. I know this but share this quote in the hopes that this time it might mean someting to  you as I continue work at making it mean someething to me. 

http://www.abraham-hicks.com

Telling Jokes

"Did you hear the one about ..."

Yesterday spending lunch time with Greg. He was in a great mood. Telling jokes (least the rhythm of his phrasing sounded like jokes), cracking me and himself up.... He let me feed him soup, burger, potatoes and apple crisp. I'd say his appetite has definitely returned!

Holding Hands

From our friend Susan O'Halloran:

I love when Greg grabs for my hand. Does he know who I am? Sometimes, it seems that way but, most of the time, it doesn't matter. I just love being with him. Always reminds me that our presence is enough. We don't have to be anything else than just here… just us.

Petrie Dish Part II

Manny, Gregory's day care aide, was ill Monday through Wednesday. He is rarely off from work so I can imagine that he must have been feeling really poorly. I covered lunch and dinner on the first day, did lunch and asked Isaac to cover dinner on the second day, and then I got sick on the third day.

101.7 fever. Nauseous. Runs. Slept all day.

Susan, dear old neighborhood neighbor and friend covered lunch and Pat, dear new friend and Gregory aficionado covered dinner. Susan's comment was, "I just love when he reaches out and holds my hand." Pat's comment was, "I have not made such a mess since the boys were in high chairs. Too much round food!

I share this with you for several reasons. First I am grateful to my family of friends for their being available to support Gregory when I am not able to.

Also, for those of you who are caring for a loved one, do not be afraid or embarrassed to ask family and friends for help. You will find that if they can spare the time, do not have to work at that time, or do not have previous unchangeable plans; they will be at you side to support you and your loved one!

Petrie Dish

A Petri dish (sometimes spelled "Petrie dish" and alternatively known as a Petri plate or cell-culture dish), named after the German bacteriologist Julius Richard Petri, is a shallow cylindrical glass or plastic lidded dish that biologists use to culturecells – such as bacteria – or small mosses.

I have noticed that this year I have been getting ill more often. Upper respiratory, flue,colds, just not feeling up to par.

My niece Colleen, noting that visiting Lieberman Center is kind of like living in a Petrie Dish, suggested I start using Kiefer, a pro-biotic beverage. Probiotics are live bacteria and yeasts that are good for your health, especially your digestive system.

We usually think of bacteria as something that causes diseases.  But your body is full of bacteria, both good and bad. Probiotics are often called "good" or "helpful" bacteria because they help keep your gut healthy.

In some ways she may have had an important insight. When at Lieberman I am with a population of residents who are easily prone to getting ill due to their age and their stage of dementia related diseases.

I am very hands on with my "new family" as I greet them, help them at meal time, push a wheel chair around the corner to the TV room, smother Gregory with kisses . I try to sanitize when I leave but what about all that time I am there?

I remember that when I began teaching, I was ill most of the first year because of the "petrie dish" that is a classroom filled with 25+ children.

THANKS COLLEEN. You are appreciated!

Happy Anniversary Part 2

A few more photos taken by Manny from Gregory and my 40th wedding anniversary. See captions below:

Feeding of the wedding cake.

Notice the hands!. I love this one.

What a smile!

Look at that look of recognition and love!

In some ways both of us are fading.

G with his Alzheimer's.

Me coping with approaching my 70th birthday.

There really was recognition of our anniversary.

Gregory was alternately smiling and crying.

As was I.

https://www.youtube.com/watch?v=mhPcWRMEBXU&spfreload=10

This video contains, from Plum Village and Thich Nhat Hanh, a song/chant that has become Gregory and my theme song. The first two lines talk of Gregory's being free and the second two lines talk of my being free.

Happy Anniversary

Today is Gregory and my 40th Anniversary of being in a committed relationship. I brought him chocolates and flowers and we shared chocolate cupcakes. The flowers in the background were a gift from Manny, Gregory's private care worker.

A staff photographer at Lieberman documents the various events. The photographs are nicely mounted on a poster and displayed on the floor so the residents can see them.

The photos on the top of this poster were from Gregory's art show. A number of residents from the other floors requested their photo be taken with Gregory (they all love him) and the group shot shows the pride and love his floor mates have for him.

The faces have been blurred for private purposes but you should still be able to get the idea of what a wonderful event this was for Gregory and for all of the attendees. Not pictured was the lovely cheese, fruit, and cracker platters that Lieberman provided.

Extreme Trust

Over the last few weeks I have been posting about End of Life topics.

1) I dealt with not sending Gregory to ER when his fever would not break even though the doctor though I should.

2) I thought about under what conditions I would use ER.

3) I revisited Gregory and my previous conversations about "no heroics, do not resuscitate, no inadvertent prolonging of life."

4) I made the decision to apply for Hospice (which while dealing with end of life does not mean that death is just around the corner.)

I am aware that all of these dealings are easy for me on an INTELLECTUAL level, but then the EMOTIONAL level creeps in and I cry, and sob, and want to get hysterical and scream and rend and smash.

While I enjoy being with Gregory and am able to love him as he is today, in his world, I also know that I do not want him to "stick around" for my benefit and I know that his condition will continue to get worse.

The separation will not be easy but I know that I will get through it. I also know that while I can decide, via Power of Attorney over Health, what measure will be taken; I cannot decide when his life will begin to end. That is his job and the universe which watches over him.

So getting to the point of this post. It is not easy making these decisions on Gregory's behalf. The first thought that came to mind was what "Extreme Trust" he has placed in me to make these decisions.

Then a second through quickly replaced the first, which helps explain why these have been emotional times for me.

The EXTREME TRUST is that which I place in myself to be able to make these decisions on Gregory's behalf!

Anniversaries

Wondering why my emotions are strong and unexpectedly surfacing? Then I realized:

01/07/14

Gregory moved into Lieberman

12/25/14

The first Christmas in which Gregory and I did not decorate or bake cookies or entertain.

The first Christmas in which Gregory and I were not living together.

01/01/15

The first New Year's eve in which Gregory and I did not entertain.

The first New Year's eve in which Gregory and I were not living together.

01/10/15

Gregory and my 40th anniversary.

The first anniversary in which Gregory and I were not living together.

On Writing, On Life

Interesting that it more difficult to write about interesting, fun, timely things here than it is to write about emotional, difficult, worrisome things on my Alzheimer's BLOG. Guilt plays a role in making me come here when the last post date gets too far for comfort.

"Write everyday if you want to consider yourself a writer." Sit down and write about whatever comes into your head. Use writing motivations to help you get started. Write non-stop for ten minutes about whatever you are thinking about. But that doesn't always work.

For me, writing is a way of processing my life. Understanding it. Sitting with the difficult emotions that arise and seeing what they are telling me. Laughing over the amusing funny things that happen. Wondering about what I see and perceive around me. Thinking about and planing creative ventures and projects.

I was worried about getting through the holiday season this year since it was going to be the first Christmas and New Year's that Gregory and I did not celebrate together in forty years. But then I got to thinking about what a good (relatively) place we are in today compared to the hell our life was last year BL (Before-Lieberman.)

Also, I was able to celebrate with Gregory, just in a different way. I had my meals with him in the Lieberman dining room, we opened gifts, we had a Christmas tree in his room, we watched our usual holiday videos.

So now we are in a new year, a time of resolutions, a time of plans, a time to move forward. But can I do that when in many ways I feel like I am still "on hold" with Gregory as he continues to change and decline.

I visit almost every day for an hour or two and that cheers me up. I am in the process of signing up for Hospice for him which feels empowering to be able to control that part of the future which I am able.

But when I am home I am lonely, miss him so much, and feel lethargic finding  it is easier to not face my creativity, my projects, my day to day life maintenance. Gregory is still a very large part of my life and my focus. I am happy that he is still with me and that he is content, happy, safe, well taken care of.

So you can imagine that most of my writing is directed towards my Alzheimer's BLOG.
http://mhorvichcares.blogspot.com .

But what about me? Maybe another year will help me feel more my new self and help me get on with life. Maybe another year will help me realize those many projects I have created for myself. Maybe I'll get back into being a Supernumerary for the opera, Ringmaster for Michael's Flea Circus, Curator of a second museum The Small, Writer, Poet, Public Speaker? Maybe I will slowly get used to my life without the old Gregory, the old relationship, the old times together.

Or maybe I'll just continue to post more often on the Alzheimer's BLOG for now and see how life unfolds for me without too much pressure, too much fear, too much regret, too much frustration, too much anger. Maybe LIFE will sneak up and before I notice, I will be the new me?

A Bad Day

This spoke to me today. I would add that when having a bad day, it is OK to recognize and sit with your emotions. It is OK to feel down, or low, or bad but only for part of the time. Sit and feel bad for maybe 15 minutes. Then get up and do something that makes you feel good. It is hard to have a bad day when you are feeling good. The bad continues usually because you continue to beat yourself up, or you continue to avoid the truth of what is upsetting you and what you can do to change that. It is easy to say this but a lot more difficult to practice it. Try. Maybe a minute of happiness this time and two next time. It will grow if you let it! I have highlighted some thoughts further down:

January 4, 2015 Bad Days Hard Learned Lessonsby Madisyn Taylor We all have bad days and within these days is usually a gem of a gift waiting to be opened. We all have days from time to time when it feels like the world is against us or that the chaos we are experiencing will never end. One negative circumstance seems to lead to another. You may wonder, on a bad day, whether anything in your life will ever go right again. But a bad day, like any other day, can be a gift. Having a bad day can show you that it is time to slow down, change course, or lighten up. A bad day can help you glean wisdom you might otherwise have overlooked or discounted. Bad days can certainly cause you to experience uncomfortable feelings you would prefer to avoid, yet a bad day may also give you a potent means to learn about yourself. You may consider a bad day to be one where you’ve missing an important meeting because your car stalled, the dryer broke, and you received a piece of very bad news earlier in the morning. Multiple misfortunes that take place one after the other can leave us feeling vulnerable and intensely cognizant of our fragility. But bad days can only have a long-term negative effect on us if we let them. It is better to ask yourself what you can learn from these kinds of days. The state of your bad day may be an indicator that you need to stay in and hibernate or let go of your growing negativity.  Bad days contribute to the people we become. Though we may feel discouraged and distressed on our bad days, a bad day can teach us patience and perseverance. It is important to remember that your attitude drives your destiny and that one negative experience does not have to be the beginning of an ongoing stroke of bad luck. A bad day is memorable because it is one day among many good days – otherwise, we wouldn’t even bother to acknowledge it as a bad day. Know too, that everybody has bad days, you are not alone, the world is not against you. Tomorrow is guaranteed to be a brighter day.

Invisible Wounds

Invisible wounds are the hardest to heal for their closure depends on the love of others. And patience, and understanding and the tender gift of time.

From Call the Midwife, Season 3, Episode 8

A Conversation

Dinner time at Lieberman.

Gregory chatting with table mate Martha caught in a video by Manny.

• • •

G: "Mumble, mumble, mumble, mumble."

M: "No you have to talk if you are going to speak." Sigh, "Oh what would you have to say anyway?"

G: "No, mumble, mumble, mumble, mumble."

M: Look of exasperation.

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.

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