A Brainstorming Chart

May have posted this previously but just came across it today as I was cleaning up my computer files. Did this one day last year when I was feeling "down" and wanted to revisit my apologies to Gregory, and to list everything I could think of for which I was grateful. 

One thing I did not include was what a trooper Gregory was, always kind, calm, patient, loving, forgiving, etc etc etc.

Hope you can read this or enlarge it on your computer screen. If you cannot read the "small print" and would like me to send you a copy via e-mail or snail mail let me know.

A Christmas Full Moon

When I saw this article (reproduced below) today, Christmas Morning, I took it as yet another sign from Gregory. A wink, a nod, a hug, a kiss, a love message whispered in my ear.

The full moon which will occur tonight, just past Christmas Day, at exactly 5:11 a.m., Central Standard Time, last occurred forty years ago in 1977 which is when Gregory and I celebrated our first Christmas knowing each other. For the first time in 40 years, there will be a full moon on Christmas!

We actually met on January 10, 1976 and during that first year courted like couples did in the old fashioned days. He was married to Barbara and I was in a committed relationship with Robert. 

By the next year, both Barbara and Robert would be out of the picture and Gregory and I would have consummated our relationship and been behaving like two very foolish young people in love.

I certainly would not have had any slight inkling at that time that I would end up here, during our 40th year, alone and grieving Gregory's passing with both of us living and loving so strongly and successfully dealing with Dementia/ Alzheimer's for 12 years.

I was able to get through Christmas pretty easily, emotionally, with friends last night and with my God-Son today. I was able to sit with Gregory's ashes and speak of my love for him and how grateful I am and will continue to be for having known and for having loved him and for his having loved me so strongly.

New Years will be the next hurdle over which to hurtle but I will face that when I get there, followed by Gregory and my 41st anniversary on January 10th. Ironically there is HURT in HURTle! Anyway Merry Christmas to you my readers. Thanks for being here!

This photo of the 40 year Christmas Full Moon was taken by friend Jerome Bloom:

Rare full moon will shine bright on Christmas

Teresa Blackman 5:16 AM. PST December 24, 2015

Rudolph’s nose may not need to be quite so bright on the way back to the North Pole this Christmas. For the first time since 1977, the sky will be lit up with a full moon.

The rare event is called the Full Cold Moon because it occurs during the beginning of winter. This year’s peak will happen on Friday, at exactly 3:11 a.m., Oregon time.

While many will no doubt still be fast asleep, anyone who does want to see the moon will have a good chance to view it, according to KGW Meteorologist Rod Hill.

He said partly cloudy skies are in the forecast, but it looks like conditions could break for good sky watching.

“A cold night with partly cloudy skies and maybe a snowflake in the air could go mostly clear at times, allowing a great view of the moon and maybe Santa's sleigh, too,” Hill said.

The Christmas full moon phenomenon won’t happen again until 2034, according to NASA officials who track this kind of thing.

“As we look at the moon on such an occasion, it's worth remembering that the moon is more than just a celestial neighbor,” said John Keller, NASA’s Goddard Space Flight Center in Greenbelt, Maryland. “The geologic history of the moon and Earth are intimately tied together such that the Earth would be a dramatically different planet without the moon.”

http://www.kgw.com/news/rare-full-moon-will-shine-bright-on-christmas/7384637

I Am Grateful

I am grateful that:

-Gregory no longer has to live with Alzheimer's.

-I no longer have to live with Alzheimer's.

-Gregory died peacefully.

-Gregory never became non-responsive until his last four days.

-Gregory was able to let go of life in four short days.

-Medicaid was approved in three short weeks.

-we were able to find our condo where Gregory enjoyed living in downtown Evanston for close to five years.

-I continue to enjoy calling the 807 Davis Street condo my (our) home.

-Gregory didn't seem to be in physical pain for most of his 12 years with dementia.

-Gregory was in good health.

-Ernie was able to help Gregory reconnect with his body during massage sessions.

-so many people were loyal to Gregory and visited as often as they were able.

-Gregory remembered who I was until the end.

-Gregory never forgot my name.

-Gregory continued to enjoy his chocolates.

-Gregory was able to enjoy music.

-Gregory and Manny developed a loving relationship.

-Manny appeared in our life to support Gregory.

-we were able to afford Manny's services for close to two years.

-Gregory enjoyed his three square meals a day.

-Gregory stayed on his "regular" diet and didn't have to move to "mechanical" or "puree" food.

-Gregory still enjoyed watching TV.

-Gregory's spirit and soul always seemed to be present.

-Gregory rarely got angry.

-Gregory said he was happy at Lieberman.

-everybody at Lieberman loved Gregory and paid him a lot of attention.

-we were able to travel to Italy, Spain, France, Mexico and around the U.S. after Gregory's diagnosis.

-we had a loving support group in family and friends.

-the Lieberman Center provided such good care for Gregory.

-Midwest Hospice and Gita and Elisabeth provided such good care for Gregory.

-the doctors, nurses, CNAs, and staff at Lieberman provided such good care for Gregory.

-we found each other and instantly fell in love 40+ years ago.

Skills

Gregory still has some low level skills available and Manny and I continue to try to cultivate their use. Gregory isn't always consistent in using the skills but they do appear now and then. For example he was able to feed himself half a dozen blue berries and even say, "Yum," but the skill did not continue as I had hoped until all the berries were gone. Don't know if he looses focus, or gets tired of "performing," or just forgets what he is doing? But we try what we try and we are grateful when he succeeds.

He can feed himself a pretzel stick and finishes it most of the time. Sometimes he drops it and sometimes he forgets it's there, but for the most part he is "Pretzel Stick Literate!"

More often than not Manny or I help Gregory keep himself hydrated but he can once and a while list the glass to his lips and take a long drink of cold water.

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

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.

BLIND

This advice from Pema Chodron holds for dealing with Alzheimer's Disease. With Alzheimer's things change so fast and we have the tendency to hold on to the way things used to be (BLIND.) We get used to the way things are so we do not see the signs of the needed change in our care giving (BLIND.) When the changes do happen, we are surprised, wrecked, depressed, down (BLIND.) If we are able to be ALIVE and AWAKE, we will see that even then there is so much for which to be joyful, grateful, balanced in all things.

November 26, 2014 HOLDING ON TO OUR BELIEFS In Taoism there’s a famous saying that goes, “The Tao that can be spoken is not the ultimate Tao.” Another way you could say that, although I’ve never seen it translated this way, is, “As soon as you begin to believe in something, then you can no longer see anything else.” The truth you believe in and cling to makes you unavailable to hear anything new. Holding on to beliefs limits our experience of life. That doesn’t mean that beliefs or ideas or thinking is a problem; the stubborn attitude of having to have things be a particular way, grasping on to our beliefs and thoughts, all these cause the problems. To put it simply, using your belief system this way creates a situation in which you choose to be blind instead of being able to see, to be deaf instead of being able to hear, to be dead rather than alive, asleep rather than awake.

Going to the Movies

Last February I was about to cancel Gregory's cell phone since he would not be needing it anymore. I found out that Manny, his private day care person, was using a "pay-as-you-go" cell phone and it was costing him a lot more than I was paying for Gregory to be part of my family plan. So I gave Manny the phone as a perk to his working for us.

With the advent of the iPhone 6 and 6+, the cost of the iPhone 5 plummeted to 99¢ so I bought one for Manny. He is tech savvy so I knew he could make good use of a "smart phone." As an additional perk I still pay for the service and the data but it is WELL worth it because Manny is so good to and for Gregory.

Here is a photo that Manny sent showing the first re-blooming of the Cyclamen Gregory has in his room.

And here are two movies (similar to each other) that Manny sent to me via text. You will see a bit of Gregory's "French Man" routine.

'

Today

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

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

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

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

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

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

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

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

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

A Reply

In response to a letter from a former work mate of Gregory's (http://mhorvichcares.blogspot.com/2014/02/a-letter.html)

Dear Mary Ellen and Bob,

What can I say. I am so sorry that you are going through this. Never easy. Trite comments like "But we have so much for which to be grateful." are true but help little. People over the years have always been very kind with their advice, their "be good to yourselves," their love and affection, their suggestions. But in the end nothing really helps, does it? My "trite" comment for you would be, "Love is all we really have. Cherish it. Hold on to it." That has been my guiding principal.

I know, however, that advice from others doesn't really help until it becomes part of your own experience. I am happy that in some small way my journey with Gregory has been helpful to you both. My fervent wish for you, as it has been for me, is that I wish I could make it all go away! But since I cannot, I'll share Gregory and my motto that helped for many years, "We have a choice, lie down and die or hunker down and keep going the best we can!

Mary Ellen, Gregory always loved working with you and Thresholds was one of the career highlights of his life. He learned so much about people and caring and during that time of his life he met me, worked through leaving his wife after seven years, and eventually returned to his first love Architecture. He truly loved helping the residents at Thresholds; cooking with them, teaching life skills, going on shopping trips. In many ways you, and Jerry Dincin and Thresholds gave him a new identity which he has held on to this day.

Thanks for writing and sharing your thoughts. In many ways they bring tears to my eyes. When I am able to step aside from my grief, my anger, my impatience, often my lack of compassion, my fear, my loneliness, my being less than perfect in my support of Gregory, my selfishness ... I do know that I did a wonderful job helping Gregory cope and manage to live with Alzheimer's for so many years. And even today when he is so much less than he was, and in my role as Secondary Care Giver with Lieberman taking most of the responsibility, he is safe, well taken care of, and loved by many many people.

Michael

Grand Mal Seizure

Today at 8:15 am I received a call from the Lieberman Center telling me that Gregory had a seizure and was sent to ER. I quickly got dressed and went to the Skokie Hospital's ER. Luckily the hospital is just across the parking lot from Lieberman and both are only 10 minutes from the condo.

Gregory was resting comfortably. He was not upset or frightened. His usual pattern is to remain calm (as I have learned to do.) He was happy to see me and between various tests I  held his hand, talked about things, and sang to him. He dozed on and off which is usual after a seizure.

The seizure was a Grand Mal which is the larger one when compared to a Petite Mal. The Petite Mal sometimes involves a temporary staring off and often goes unnoticed. The Grand Mal is the one with passing out, convulsing, shaking, eyes rolling back, and the danger of biting one's tongue.

Luckily for Gregory, he was in a sturdy chair at the breakfast table and when he began the seizure the head nurse was in the dining room. The Lieberman staff acted quickly and efficiently and I am grateful for that.

The various tests that Gregory had did not show anything unusual. He will be in the hospital overnight for observation. I now understand that in the later stages of Alzheimer's approximately 25% of people experience seizure activity. The doctor has prescribed a low dose of anti-seizure medication to help make sure this does not happen again.

For now all is well until the next dip in this roller coaster ride. G is doing well. I am doing well and again the word grateful, I am grateful that I am not having to do all this alone like I have done for the last ten years. I have a huge group of people supporting me and Gregory and it feels good.

It's Your (My) Choice

Advice from "Abraham" doesn't always make sense when it comes to dealing with Alzheimer's Disease. In this case, I think one can attempt to apply the concept. When some activity, interaction, communication, etc goes awry (and I use the word awry alot in my writing) I will try to conscientiously reach for a happier memory or thing I am grateful for today. Maybe that will work. When Gregory forgets how to make the bed, I will think, "At least he knows that bed is where we go to sleep." I'll let you know how this works. When he is fumbling with his fork, I will think, "He is enjoying the food I made for dinner tonight." (He does compliment me about our meals!)

awry |əˈrī| adverb&  adjectiveaway from the appropriate, planned, or expected course; amiss:

http://www.abraham-hicks.com/lawofattractionsource/index.php

Some Mornings

Some mornings he wakes up and nothing seems to work.

This morning he ran into problems with shaving. Shaver in hand, he called me into the bathroom trying to tell me something, but never was able to get to it. He pointed at the shaver, and then the mirror and said, "There is a little something."

That is as far as we got after his attempting to communicate several times. I waited patiently, guessed at a few things, and finally told him just to shave, which he did.

A little while later he called me again with the "light bulb" having gone on again, he struggled to tell me what he had realized, and failed again ... another dark communication. We have been up for 30 minutes.

He did OK beginning his shower, I was in the bedroom when I heard him shouting "Help! Help!" I came running to find that he was finished showering and had begun to turn the water off but only did so half way and was standing in the cold stream of water still coming out of the shower head.

I turned the water hot again so he could warm up and then we turned it off together. Actually he did so by himself without any help, just my standing there which made it a little more frustrating and confusing.

Next he struggled to put on his sweatshirt, arm through the head hole and out the sleeve. He kept mumbling, "No that's not right" and continued trying to figure out how to put it on. He sat down on the bed for a while seemingly trying to regroup. I held back and he finally did figure out how to put the shirt on.

We have been up for an hour.

While he was reading the newspaper, I set out the cutting board with his bread and honey and announced, "Your bead and honey are ready." He thanked me and came over to begin preparing his first of the morning food. I returned to the bedroom.

Some five or ten minutes later I went out to see how he was doing. He was standing by the toaster, looking back at the cutting board, and back and forth again and again.

He was unable to connect the toast needing to go into the toaster and the button needing to be pressed. We worked through the process together.

When the toaster was finished and his toast popped up, he asked, "Does that turn it off?"

I am grateful that he sought my help, that he was able to begin shaving and then to finish, that he was able to take a dump without my help, that he was able to shower for the most part, that he was finally able to figure out how to get dressed, that he kissed my head as he left the bedroom and said, "I love you," that he was able to read the newspaper, that he was able to eat his toast after putting on the honey, and that he was able to go back to his newspaper.

I am grateful that I was able to keep my patience, not jump in to help too quickly, that I didn't get emotionally involved, that I was able to move from one difficulty to the next without anger, and that he kissed me on the head and said, "I love you."

I am frightened that we are getting closer to my having to more closely supervise his shaving and showering, physically helping him get dressed, and not only making his breakfast but also toasting his first up before breakfast snack because when confused verbal instructions do not work.

We have been up for two hours.

The above meditation arrives daily at my e-mail's door. This one spoke loudly to me as often, in the midst of our Alzheimer's Journey, I am not able to interpret or see how to apply the meditation.

WONDERFUL THINGS THAT THERE ALREADY ARE

Gregory often tells me he loves me.

His five to nine year old boy behaviors are endearing.

He tries hard to "get it right."

He seems to hold on to knowing what he doesn't know, like do NOT use the garbage disposal.

Gregory always says thank you.

He enjoys the meals I prepare for him and "goes on" about how delicious they are.

Says "Oh Goodie" when I tell him about our next adventure or who is coming to visit.

He still tries to communicate although words usually fail him.

In bed at night, we hold hands as we fall asleep.

He apologizes when he does something stupid.

Gregory tells me that I cannot always be calm and understanding.

He loves to paint and always looks forward to seeing his mentor/teacher/friend Nancy.

He shows me the daily architectural picture in his calendar.

He makes the bed when he thinks of it.

He laughs at my jokes and silliness. 

I love him.

Followup: Gregory Trying to Live in My World

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

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

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

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

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

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

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

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

Grateful Series

Although this BLOG is my place to process, rant, and share; I keep telling myself that I should write as well about things when they feel good, are going well, are successful.

Today, I am grateful that Gregory was able to get most of his breakfast together. I really mean it. He came and appropriately asked for help when he couldn't figure out how to get the fish out of the open tin and onto his crackers, he wasn't sure what was missing in his bowl of cereal and fruit that was lacking the soy milk, and he needed help figuring out that a tea bag is necessary with hot water.

But I really am grateful that he asked for help, did most everything else without my help, that I did not loose my patience, that my voice while helping was even, loving, and respectful, and that I do not feel like a train wreck. It's going to be a good day!

Today

“What day is it,?" asked Pooh.
"It's today," squeaked Piglet.
"My favorite day," said Pooh.”

You'll Know

You'll know that things are not going well when you find many posts here. It is a way for me to process and put to rest, at least for a brief while before the next one, the injuries sustained by the most recent explosion.

Perhaps I should try to write about the good things that happen.

Like Gregory just having brought me half a pear (the other half for his lunch) sliced and beautifully arranged on a plate.

Or the fact that this time when folding the underwear, he got his size and my size correctly into different piles. In the past I have found myself unwittingly trying to fit myself into his underpants which were neatly folded into my drawer. Not a pretty sight if you know how slender he is and how ample I am.

Or how he tells me every night before we drift off to sleep how much he loves me.

For these things I am grateful.

Otherwise

This was posted on my friend Jan's blog and it resonated. Thanks Jan. Thanks Jane. Otherwise by Jane Kenyon by jyourist I got out of bed on two strong legs. It might have been otherwise. I ate cereal, sweet milk, ripe, flawless peach. It might have been otherwise. I took the dog uphill to the birch wood. All morning I did the work I love. At noon I lay down with my mate. It might have been otherwise. We ate dinner together at a table with silver candlesticks. It might have been otherwise. I slept in a bed in a room with paintings on the walls, and planned another day just like this day. But one day, I know, it will be otherwise. Jane Kenyon from Otherwise: New and Selected Poems  (Graywolf Press, 1996)

Joy

As paraphrased from The Daily Word, Saturday, July 02, 2011.

JOY

I celebrate life with joy and gratitude.

Regardless of my circumstances at the moment, on this blessed summer day, I look for evidence of goodness and take it in with all my senses. I hear the joyful sounds of life--music playing, children laughing, and neighbors chatting outside their homes.
I savor the fragrance from a nearby rose garden or the aroma of dinner cooking on an outdoor grill. The taste of a refreshing glass of iced tea or an ice cream treat brings a smile to my lips. I revel in the warm summer sun or the coolness of an air-conditioned room. Each sensory experience reminds me of the joy of being alive, as joy shines in me and in the world.