FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Monday, October 29, 2012

Fireworks for Christmas

While driving home from dinner tonight, I broached the subject again of not decorating for Christmas this year. I wanted to see if he remembered that he was still in agreement with the idea.

Gregory said he agrees but added, "I thought there were going to be fireworks?"

"Fireworks are for your birthday on July 4th."

"My birthday."

"Yes."

"Please be sure to let me know when."

"I will."

Sunday, October 28, 2012

There Are Good Days

Try as I might to post about the good days, it is most often the bad ones that send me to my computer to contemplate, to process, to poeticize.

So when you see a string of posts, you can probably guess that the marry-go-round is spinning wildly out of control.

When you see a string of NO-posts, you can probably assume that for the most part things are mostly under control and I am coping.

Under any of these scenarios you may assume that Gregory feels content, happy, and safe.

As he signs off each evening, reading aloud the words I printed on a Post-It from a poem called "The Enlightened Heart:"
SIMPLICITY, PATIENCE, and COMPASSION." 

These are his guidelines and my aspirations.

Thursday, October 25, 2012

The Closet

Previously we talked about how to use a hanger and how that skill has disappeared. Just to bring you up to speed, there have been no changes, the skill is still gone.

So it makes sense that button-up shirts vs pull-overs would eventually become the same. If you only unbutton the top two or three buttons on a button-up shirt, you can take it off like a pull-over. Easy, no?

Then why after you unbutton a few of the buttons and slip your button-up off over your head would you want to button it up using all the buttons, especially since that prevents you from easily getting it onto a hanger. But we have already discussed the hanger issues.

And have you ever thought about how to navigate the three holes on a pull-over? You have a left arm hole, a right arm hole, and a center head hole. Get those confused and you could be for hours getting dressed.

The mind, or lack of it, is an amazing thing.




Tuesday, October 23, 2012

Raspberry Jam

This morning our best friend Roger, who spent the weekend, Gregory and I were sitting at the counter in the kitchen having our morning coffee and toast. Four jams were lined up in front of Gregory, his two pieces of toast cut in half so he could have a sample on each jam.

Finished with Pear, Fig, and Kumquat Orange he was ready for the Raspberry Jam. At first he did now remember which jam was next. So I pointed to the Raspberry. He got distracted and wondered again which jam was next. Roger pushed the Raspberry Jam towards him. Still Gregory was not sure which jam to use next. Roger explained, "The raspberry jam is next," and handed Gregory the jar.

Gregory aware and amused at his continued confusion giggled and lovingly said, "I guess that's what friends are for."

Sunday, October 21, 2012

Life Skills

This morning Gregory put on his pants three times. Go figure?

Thursday, October 18, 2012

Roomates

This article was recently published by our friend John Schimmel in a new magazine written by and about GLBQ people and their family and friends. John has been a long time friend of Gregory's since college days.

IN APPRECIATION OF MY COLLEGE ROOMMATE
By
John Schimmel

This is the story of my own coming out. I am not gay – I don’t mean that kind of coming out. My coming out was from a place of myopia.
Freshman year of college I pledged a fraternity. It housed the Adelphic Literary Society. The eating club cook was an enormous, Czech psychic. Kegs were tapped at parties but the intoxicant of choice was acid. The sport of choice was Frisbee. It was not your everyday fraternity and I immediately regretted my choice.  In the long run it turned out to be the perfect place for me, which is probably all I need to say about myself.
The fraternity house had a huge music room with an ancient piano that had to be sent out to be refurbished shortly after I joined. When it was returned it sat for a time in the entry hall before being rolled back to its home. I was upstairs one day and heard music wafting up through the stairwell. I went downstairs to find a tall, skinny, pale sophomore we’ll call George playing Eric Satie’s “Gymnopedie.” Not  just playing it. Breathing exquisite life through his fingers into the music. What happened next was the heterosexual equivalent of love at first sight.
Eventually, George asked if I wanted to share a two bedroom suite in the frat house the following year. I did. I went away for the summer. I came back ready to move in – and discovered that  George had gotten there before me and decorated the suite. Zebra striped curtains hung in the huge bay windows.
I was furious. I told anyone who would listen that the place looked like a gay brothel.  I refused to move in for weeks – I can’t remember where I slept but I wanted nothing to do with the image George was projecting for us.
I eventually relented and unpacked. George was incredibly forgiving. As things thawed we wound up spending hours and hours talking late into the night. George shared his passion for architecture with me. He had not officially come out yet but he confessed his discomfort about a crush he had on two very beautiful fellow students – this was an all-men’s school at that time. He helped me deal with a crush another man developed on me, a man I loved as a friend and did not want to wound.
The following year, I joined George and two other friends renting a local beach house. It was right on the Long Island Sound, affordable only because it was off-season. We cooked feasts, walked the beach, watched snow collect on the frozen tide and undulate as the current moved beneath. All activity halted for sunset.
The following year we rented it again, minus George because he’d graduated. He’d started dating a fascinating woman by then. Toward the end of my senior year he arrived at the house, handed me a guest list, said he wanted to get married on the beach, and left me to plan his wedding. It turned out to be a glorious, quasi-hippy affair. The morning after the wedding I found George in bed with his new bride and one of the beautiful boys he’d had a crush on. But he’d still not declared his sexual preference.
I can’t recall how long the marriage lasted. I remember visiting George and his wife in Boston and going with another couple for a spectacular twelve course Italian meal in a room that held only the six of us behind the kitchen in an out-of-the-way restaurant. I remember being drunk enough to later argue with George’s wife about her desire to have a kitchen with identical unmarked mason jars for all the spices.  Why would she not label the jars? What was the point?
At some point I learned George was divorcing his wife. He’d met a man and fallen in love.  The lover was George’s opposite in every way – short to George’s tall, flamboyant to George’s reserved. George liked to live without clutter; his lover was a collector of tiny things – tiny houses, tiny furniture, tiny dice, tiny playing cards, all neatly curated in display cases. They eventually moved into a wonderful old house by the railroad tracks in Evanston, Illinois. The kitchen was filled with un-labeled Mason jars filled with spices and teas.
When I decided to marry the beautiful and brilliant Chicago native I’d been dating I sent George and Mark our guest list and told Greg it was his turn.  The two of them found the location, caterer, florist, photographer. The day of the wedding, which as to be outdoors, it rained so hard there were ducks swimming on the lawn. But George and his lover clearly had some sort of magical power because it cleared up for exactly the amount of time we needed. The storm broke again as the last of the bartender’s equipment was loaded into his truck.
During one of the moments when it was legal George and his lover eventually married. Mark retired from teaching and helped George run his architecture firm. They had what seemed like an idyllic life. But now, after forty years together, George has developed early onset Alzheimer’s. My brilliant roommate is not always home now, though there are flashes of his old self. But he pretty much requires constant care. 
George and  Mark have had to shut down the architecture firm. They sold George’s piano, a family heirloom, because he could no longer play. They sold their house where my wife and three kids used to visit at Thanksgiving.  Mark donated his collections to  a children’s museum. The museum has built a special gallery that he curates, but he has largely dedicated himself to taking care of George. He gently helps George finish sentences. He sends out email notices of George’s accomplishments and status and writes beautifully about the disease about which he has had to learn so much. He could not be more loving or supportive or present for my friend whose homosexuality I once scorned and feared. My appreciation for what he is doing and my respect for his courage under heartbreaking circumstances bring tears to my eyes. I defy anyone to find a couple more dedicated to one another.
In college, George and I took the same English class once from an eccentric lecturer who, on the first day of class, told us the topic for our final paper. He gave us the date and even the hour it would be due. He said he would never mention it again but that at the appointed hour “the train will leave the station.” Translation: He would flunk anyone who tried to deliver late. As the date approached, George bought a small suitcase, affixed a railroad baggage tag to it, and put in it his final paper together with an album the professor was to listen to while he read the paper. Needless to say, George aced the paper.
I am embarrassed by how many years it took me to understand that the zebra stripes were hung in the same spirit. George wanted to tweak my straight-guy-from-Beverly-Hills view of life.  I tell George and his husband, when we talk, that I love them. The ability to say that to two men is one of George’s gifts to me. But I forgot to thank him, when he still had a fully-functioning memory, for letting me move into the suite he’d decorated with such profoundly, wonderfully funny bad taste after my spectacularly immature hissy fit.  I can send this piece to him, though. That’s the joy and danger of putting something in writing: It’s always there as a reminder.

Wednesday, October 17, 2012

Coffee Time Past

Today "Coffee Time" almost disappeared. Gregory always has coffee at 5:00. He pours this morning's leftover coffee into a mug, adds milk, heats it in the microwave for one minute. Then he selects three or four cookies and sits at his desk studying the sunset taking place on the roof top garden outside the condo window. He has been doing this for two or three years now.

Yesterday he asked for some help so I got his coffee ready for him. Today, he arrived at my desk and asked for help again. This time I told him to go ahead and I would help if he needed me. He returned a few minutes later and told me he was afraid, so I joined him in the kitchen. I still did not want to help so I told him I would observe.

He had placed an empty mug on the kitchen counter, got the coffee pot, and with the pot sitting on the counter, kept tipping it until he could see the coffee in the spout (he didn't notice that you could see the coffee level through the glass pot itself,) but he did not know how to go further. He seemed to have lost track of the mug sitting there.

He went through the same motions of tipping the pot and pointing to the spout. It seemed to make sense to him but he did not know how to proceed. He would notice out loud that there was coffee showing in the spout if he tipped the pot far enough. He actually tried pouring a little bit of coffee on the counter to see if that was what he was supposed to do but stopped saying, "That's not right, is it?" I said nothing.

He did this over and over and suddenly began moving the tipped coffee pot towards the mug but then studied and hesitated and put the coffee pot back down on the counter. Finally he seemed to notice the mug sitting there, made the connection, and poured the coffee into the mug. "That easy, huh!" he mumbled.

Next he knew that he needed to add milk. He got the gallon milk container out of the refrigerator, took off the lid, and went through the "tipping" routine again. Another five minutes worth of tipping, studying whether to pour it on the counter or not.

Then he began returning to the refrigerator, milk bottle in hand, and tried to pour milk into the refrigerator on the shelf where it is stored. Over and over. He returned to the counter and added trying to pour the milk onto the bottle cap. He didn't actually pour it on the counter or bottle cap but repeated the motions over and over asking, "Is this right? Is this how you do it? What is wrong here?" Approximately five minutes of attempted milk pouring.

He kept seeking my approval and I kept saying something like, "I am observing to see what you will do." Eventually I suggested, "You want to pour the milk into the mug." He responded as though he understood what I said but repeated the counter and bottle cap routine several more times. He kept looking to me for help and I kept saying, "I am here with you."

He began rehearsing pouring the milk into the mug. He did this three or four times and finally poured the milk into the mug. He was pleased. "Strange isn't it?" was his observation.

 "Yes," I answered.

On the way to collect his cookies from the cabinet he told me, "I love you."

"That was never in question," I responded as I often do, "I love you too."

He hugged my head and said again, "I love you."

"Me too," I replied. After assembling his cookies, he correctly put the mug in the microwave for one minute, and was back on target.

It is very painful for me, but every now and then I have to just wait it out and only get involved if he gets too overwhelmed. This time he was in a problem solving mode the entire time. By watching and letting him try to figure it out, perhaps, if he doesn't get too upset, my not helping allows him to keep his self confidence. It allows me to carefully observe so I can try to figure out what is happening.  

While I am writing this, he is enjoying his coffee and cookies. Wonder if the skill will be back tomorrow. If it isn't, I will intervene right away and verbalize what I am doing. Maybe that will help. I keep trying.

Monday, October 15, 2012

In the middle of the might I awoke to find Gregory sitting up in bed. "OK?" I asked.

"Yes. See that, that, that panel?" his pointing to the open bedroom door dressed in shadows from the nightlight just outside.

"Yes, I do."

Thinking. "One goes in and out." Thinking. Pause. "I guess I shouldn't be concerned."

He laid back down and returned to sleep, leaving me awake for a while, thinking.

Thursday, October 11, 2012

Thanks Abraham for the New Story


I love Gregory so much and he loves me.
I wake up each morning full of light and love.
I look forward to the good each day brings.

I appreciate my good friends and supportive family.
I am meditate and go into myself where I find peace.
I have more than enough energy to get though my days.

I watch what I eat and am working towards a healthy weight.
I exercise, stretch, and go for long walks.
My arms, shoulders, and neck feel healthy and strong.

I am impeccable of word and do not gossip.
I am a fact finder and make no assumptions.
I do my best which I know varies from day to day.
I am patient with and forgiving of Gregory and myself
I am supportive of Gregory and my needs.
I am compassionate towards others.

I am calm and of even temper in my day to day actions.
I keep a happy face and watch my communicative body posture.
I think carefully before making constructive comments to or about others. 

I go to bed each evening full of light and love.
I look forward to the good the next day will bring.
I love Gregory so much and he loves me.




Wednesday, October 10, 2012

Swimming

Gregory has always loved to swim. When we first moved to the Condo we were very excited that a L.A. Fitness Gym was in the building. In the beginning, G was able to manage getting to the club, managing the locker room and his gym bag, swimming and showering, and then getting back to the Condo. Most of last year he lost that ability so he did not get to swim as often as he would like. I think he was actually afraid of managing the process by himself more than actually not being able to.

Now that he has two companions, between Ben & Ken and I we can provide Gregory with more time in the swimming pool again. He is very excited about being able to swim again.

Here is the e-mail I sent Ben & Ken awaiting their agreement.

Dear Ben & Ken,

Hi. Next time I see you, please confirm that this will be OK with you.

I just cleared it with LA Fitness (downstairs in the building) that there will be no problem with your accompanying Gregory at the club when he goes swimming. You would NOT be able to work out but you WOULD be able to swim as well.

You will probably have to sign a waiver since you are not members of the club. My preference then is that if you swim or just sit by the side of the pool, you should have a swimsuit on. The club provides the towels.

Gregory loves to swim, the problem is his getting down there, managing his locker & lock, getting into his swim suit, showering is OK, getting dressed might need prompting, and then getting back to the condo. 

It would be great if you had a swim suit you could leave here and also a lock and anything you would need in the locker room like a hair brush or whatever you need personally. If you had a small bag to keep everything in it would make it easy to pop in the closet until your next visit. I will accompany the first time. Let me know if you have any questions.

Tuesday, October 9, 2012

Today

Today the Kitchen disappeared. For my future readers, just so you know, I have decided to try to keep a list of associations, connections that get lost. I was working at my computer and I called out to Gregory, "Please bring me my coffee from the kitchen." He came into the bedroom and I repeated, "Kitchen." He left the bedroom, looked towards the guest room. "Kitchen." He headed towards the living room and stopped. I got up and got my coffee.

Monday, October 8, 2012

Ride a Camel Anyone?

My adventurous brave little boy.




Last Night After Today

Gregory and I discussed the difficult day we/he had. He was calm again and I was able to say, "Well, tomorrow we'll begin again." I found myself thinking not the sad or difficult or hopeless thoughts that often follow bad days but rather ... "I'll try to do better again tomorrow." This was a sign of growth in my thinking. Then today this came across from Abraham: 

Dalai Lama

"Due to certain difficulties, if you completely lost your self-confidence, hope and will, then inevitably difficulty will continue and it will lead to real disaster. So it is very, very essential to keep hope and determination."

Sunday, October 7, 2012

Today


Today two "No"s really meant "Yes" and
The guest bathroom and linen closet disappeared.

Shut Down

Do you have any idea how lonely it is
To suffer silently?

Dinner time music is not joyful but
It covers the lack of conversation.

How many hours have I stared
At the kitchen cabinets?

As I sit in silence
Unable to look at him.

Shut down. Lonely. In pain.


Tuesday, October 2, 2012

Car Keys

Luckily Gregory, while periodically letting me know that he really would like to drive, didn't fight me and stopped driving the car long ago. This is often a difficulty for family when they have to "take the keys away." They do not want to upset the family member or make the family member resentful. These suggestions showed up in the "comments" of Dementia Care Specialists on Facebook and wowed me.

...try giving her a different pair of car keys so she feels the security

or The doctor told my grandfather that he couldn't drive and it worked.

We finally settled on leaving the car & taking the keys ( we also disabled the car). 

but often times, depending on the person, it can backfire.

. We removed the car from the driveway. It got him upset when he saw the car.