FOR GREGORY

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

PLEASE NOTE:


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


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


• • • • •


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


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


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


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


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


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



Monday, December 30, 2013

I Wish You Enough

This came across my Facebook page and I felt it worth sharing.

Recently,I overheard a mother and daughter in their last moments together at the airport as the daughter's departure had been announced. Standing near the security gate, they hugged and the mother said:"I love you and I wish you enough."The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left.The mother walked over to the window where I sat. Standing there, I could see she wanted and needed to cry.I tried not to intrude on her privacy but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking but why is this a forever good-bye?""I am old and she lives so far away. I have challenges ahead and the reality is the next trip back will be for my funeral," she said.When you were saying good-bye, I heard you say, "I wish you enough." May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail and she smiled even more. "When we said 'I wish you enough' we were wanting the other person to have a life filled with just enough good things to sustain them". Then turning toward me, she shared the following, reciting it from memory,"I wish you enough sun to keep your attitude bright.I wish you enough rain to appreciate the sun more.I wish you enough happiness to keep your spirit alive.I wish you enough pain so that the smallest joys in life appear much bigger.I wish you enough gain to satisfy your wanting.I wish you enough loss to appreciate all that you possess.I wish you enough hellos to get you through the final good-bye."She then began to cry and walked away.They say it takes a minute to find a special person. An hour to appreciate them. A day to love them. And an entire life to forget them.t the airport as the daughter's departure had been announced. Standing near the security gate, they hugged and the mother said:"I love you and I wish you enough."The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left.The mother walked over to the window where I sat. Standing there, I could see she wanted and needed to cry.I tried not to intrude on her privacy but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking but why is this a forever good-bye?""I am old and she lives so far away. I have challenges ahead and the reality is the next trip back will be for my funeral," she said.When you were saying good-bye, I heard you say, "I wish you enough." May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail and she smiled even more. "When we said 'I wish you enough' we were wanting the other person to have a life filled with just enough good things to sustain them". Then turning toward me, she shared the following, reciting it from memory,"I wish you enough sun to keep your attitude bright.I wish you enough rain to appreciate the sun more.I wish you enough happiness to keep your spirit alive.I wish you enough pain so that the smallest joys in life appear much bigger.I wish you enough gain to satisfy your wanting.I wish you enough loss to appreciate all that you possess.I wish you enough hellos to get you through the final good-bye."She then began to cry and walked away.They say it takes a minute to find a special person.

Saturday, December 28, 2013

Happy New Year

2010 - Lover

2011 - Partner

2012 - Caregiver Partner

2013 - Caregiver

2014 - Nurse

Happy New Year

Friday, December 27, 2013

Disappearing by Jan Yourist

Originally posted by our friend Jan Yourist: http://connectere.wordpress.com/2013/12/26/disappearing/

“Disappearing”

alg-pigeon-jpg
At the Field Museum,
in the Colombian World’s Fair exhibit,
a sign speaks of the disappearance of the carrier pigeon.
To commemorate its demise, I stare at a stuffed version of itself displayed in 1893.

Yesterday I sat in a dry sauna and wondered,
if I sat here long enough,
with all my juices running out,
would I disappear?
Would I simply become vapor?
At dinner a few days ago, I saw Gregory's Alzheimers
insidiously colonizing his core.
No longer knowing what a fork is
or the function for kinds of his clothing
or even the meaning of words,
he is disappearing.
While his shape is here, his smell and his sound,
he is being swallowed up,
consumed,
erased.
His person is flying away,
dissolving,
evanescing,
slowly dispersing itself into the bone and sinew of others' memories,
leaving all of us,
clutching for each other.
"Disappearing" by Jan Yourist © 2013

Today He Cried For Joy

This morning's routine was the same for Gregory. He woke up thirsty but didn't know what to do about it. He needed reminding to sit on the toilet for a while. Then he needed reminding to shave, to have the shaver taken out of the medicine cabinet for him, to be turned on, and to be put into his hand as it was guided towards his face. He needed help with putting on his deodorant and his face cream. He needed guidance into his undershirt oriented correctly for him and his underpants as well. He slipped his arms into the correctly held for him sweat shirt and his sweat pants as well.

All this was done with love and patience and kindness without making him ask first or struggle trying first. This has always been the conundrum for me, in which if I do it all, he looses the ability more quickly but if I hold back we run the risk of frustration and fear. He has gotten to the point recently that I have just decided to do it all for him because he cannot do it for himself anymore.

After we were finished, he held me and cried into my shoulder muttering about how proud he was of himself that he was able to do it all with out help. So my doing it all for him caused the memories of his doing it all for himself to be strong and the ruler of his emotions. A strange lesson for me to learn but a good one.

True Love

(A True Story)  It was approximately 8.30 a.m. on a busy morning when an elderly gentleman in his eighties arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9.00 a.m. I took his vital signs and had him take a seat. I knew it would take more than an hour before someone would to able to attend to him. I saw him check his watch anxiously for the time and decided to evaluate his wound since I was not busy with another patient. On examination, the wound was well healed. Hence, I talked to one of the doctors to get the supplies to remove his sutures and redress his wound. We began to engage in a conversation while I was taking care of his wound. I asked him if he had another doctor's appointment later as he was in such a hurry. The gentleman told me no and said that he needed to go to the nursing home to have breakfast with his wife. I inquired about her health. He told me that she had been in the nursing home for a while as she was a victim of Alzheimer's disease. I probed further and asked if she would be upset if he was slightly late. He replied that she no longer knew who he was and she had not been able to recognize him since five years ago. I asked him in surprise, "And you still go every morning, even though she doesn't know who you are?" He smiled as he patted my hand and said, "She doesn't know me, but I still know who she is." I had to hold back my tears as he left. I had goose bumps on my arm, and I thought, "That is the kind of love I want in my life." True love is neither physical nor romantic. True love is an acceptance of all that is, has been, will be, and will not be. 

Patience

Daily Word: Daily Inspiration From Unity
Friday, December 27, 2013
PATIENT
I am patient, kind, and loving.
The “Prayer of Faith” reminds me: “I now am wise, I now am true, patient and kind, and loving, too.”
If I am having trouble being patient, it is a clue I have moved away from being kind and loving. I gently take a breath. I feel my attention move with the flow of my breath into my heart. I create a space for forgiveness and let go of irritation with myself and others.

I have all the time, energy, and patience to accomplish what is mine to do. I am a loving expression of Spirit, and I am here to express my true nature in the world. I do not allow schedules, activities, or demands to convince me I have too little time to be the loving expression I am.
Love is patient; love is kind … It does not insist on its own way; it is not irritable or resentful.—1 Corinthians 13:4-5

Thursday, December 26, 2013

Sad

Verge of tears
Precipice of dispair
So many fears
How will I fare

Note to Companion

Gregory had a difficult night. We were watching TV and he got very upset. He usually likes the program we were watching, so who knows what upset him. He did let me know he was upset through his gestures and actions, not verbally.

I was unable to figure out why so we stopped watching. He sat with me at the kitchen counter while I folded laundry but he continued to be upset. I tried the usual like having him go to the bathroom, offering him some water, holding his hand. He went on trying to verbalize that something is wrong but couldn't really express that he was upset or what upset him or why. I tried to assured him by covering all bases and telling him that:

EVERYTHING IS OK. THERE IS NOTHING TO WORRY ABOUT. EVERYBODY IS HAPPY. NOTHING IS WRONG. THERE IS NOTHING TO THINK ABOUT. I LOVE YOU. I AM NOT ANGRY. NOBODY IS ANGRY. EVERYTHING IS ALL RIGHT. This helped a little. 

He sat and touched the folded shirts and pushed them around a little. Almost a random involvement with helping me fold. I offered him a shirt to fold but he didn't know what to do with it.

After the folding we had a bowl of cereal and he seemed better. We went to bed early, I read aloud, and he had a good night sleep. Perhaps the comments in CAPITALS above helped cover what was bothering him. Might be a good technique to use. Who knows. 

Wednesday, December 25, 2013

A Wish For You


May you find serenity and tranquility in a world you may not always understand. May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism. Always know that there are those whose love and understanding will always be there, even when you feel most alone. May you discover enough goodness in others to believe in a world of peace. May a kind word, a reassuring touch, and a warm smile be yours every day of your life, and may you give these gifts as well as receive them. Remember the sunshine when the storm seems unending.
 ~ Author Unknown
May you find serenity and tranquility
In a world you may not always understand.
May the pain you have known
And the conflict you have experienced
Give you the strength to walk through life
Facing each new situation
With courage and optimism. 

Always know that there are those
Whose love and understanding
will always be there,
Even when you feel most alone.

May you discover enough goodness in others
To believe in a world of peace.
May a kind word, a reassuring touch,
And a warm smile be yours every day of your life,
And may you give these gifts as well as receive them.

Remember the sunshine
When the storm seems unending.

Author Unknown






Tuesday, December 24, 2013

Monday, December 23, 2013

As you know Gregory's recent downhill adventure, along with my journey beside him, has been dramatic.
A month ago, I took him off his meds because it was not obvious that they were doing anything and he was having trouble swallowing pills (a battle every morning and bedtime.) I did this with an OK from his doctors.

I decided that I would observe to see if taking off the meds made a big difference. Well it has. His abilities have been plummeting and all kinds of bizarre behaviors are showing up. It could be just a function of this next stage of his Alzheimer's or it could be because he is off the meds.

The other part of the experiment was that when first put on the meds some ten years ago, his abilities peaked with improvement. The doctors were surprised because the meds are supposed to "slow down loss" not "peak improvement." 
I thought that if I took him off meds and watched and then put him back on and watched I might see a difference and thereby proof that the medications were worthwhile.

So we will go back on the meds in January.

Sunday, December 22, 2013

Fantasies Revisited and Released

One of my fantasies about the future with Gregory has been that we could still travel if we had a third party along to help. That could be in the shape of paying the expenses for a friend to travel with us or even a hired professional care giver.

Gregory and I have looked at every Viking River Cruse video sent to us via e-mail and talk about how wonderful the experience would be to travel the rivers of the great cities of the world, using the ship as our hotel and waking up to tour a different city every day or two. No packing and repacking, no busses trains or airplanes. Good food, comfortable travel.


But the reality is that Gregory is past the ability to travel and I am past the ability to support him so he can travel. It is a sad realization but one that I probably need to be honest about.

Even packing and going to visit family in Michigan is full of difficulties in planning, routine, time,  and space. Then reentry at home, where you would expect home routine to help, takes its toll.

I am soon to release an update to family and friends and I will post it here as well but things have really been downhill for Gregory the last month or two. Things have been changing so quickly and basic skills have been disappearing so quickly, that I haven't been able to keep up with knowing how to cope with and/or accommodate Gregory with his losses.

Stay tuned ...


Saturday, December 21, 2013

Diminishing Directions & Spacial Relationships

Up
Down
Under
Over
Around
In
Inside
Out
Outside
Closer
Farther
Left
Right

Mostly gone.

Friday, December 20, 2013

Today is a ZERO Kind of Day

ZERO ability to share
ZERO ability to communicate
ZERO ability to express self (words, gestures, showing)
ZERO ability to engage in time
ZERO ability to engage in activities by self
ZERO ability to dress self
ZERO ability to undress self
ZERO ability to identify bodily function needs (hunger, thirst, elimination)
ZERO ability to identify discomforts (cold, warm, in pain)
ZERO ability to toilet self (urination, defication)
ZERO ability to eat without continued prompting (breakfast, lunch, dinner, coffee & cookies, snack)
ZERO ability to assist with household chores
ZERO tolerance to be by self

Can sit
Can stare
Can watch TV
Can thumb through newspaper (not read necessarily)
Can thumb through a book but not read it
Can listen to music
Can pet cat
Can go for a walk

Can say "I love you."

The Amazing Disappearing Undershirt

I have posted previously about Gregory's continuing difficulties with identifying underwear (sending or receiving language) let alone getting them on in the correct orientation.

This morning a new development:

"What is the purpose of this?" asked Gregory holding up the undershirt that was waiting for him on the bench in the bedroom as he was getting dressed.

"An undershirt. It goes under your shirt." I replied.

"Isn't that amazing!" he mumbled as he struggled to orient it correctly.

He got his arms through the sleeves but got hung up at that point.


Thursday, December 19, 2013

Merry Christmas

Santa Michael

Shaving

Every morning Gregory is surprised at the stubbly growth on his face. "How did this happen?" he will ask.

"Your beard grows all the time," I explain, "That is why you have to shave every mooring."

"How about that," he replies.

Wednesday, December 18, 2013

Order

Shared by my friend Jan Y on her blog: http://connectere.wordpress.com/2013/12/18/order-by-lydia-davis/

Sounds kind of like my life:


Tuesday, December 17, 2013

Jewish Christmas

For the last, what, 25 years we have been celebrating Christmas with our Jewish Friends Jan & Jake and Cheryl & Larry and their children - Isaac, Whitney, and Emily. The kids, whom we call our God Kids, have grown up looking forward to the decorations, home baked cookies, friendship, and gifts that come with the season. Christmas would not be the same without a visit to Uncles Gregory n' Michael!

In the past we would cook dinner, slowly moved to ordering out, and now have settled into the typical Jewish Christmas - we go out for Chinese! Pine Yard, a great restaurant is just 2 blocks from the condo and that makes it very convenient and allows for no "dinner clean-up."

The purpose of this e-mail was to provide an update since most of them have not seen or been with Gregory for a couple of months.

Dear J, J, I, C, L, W, and E,

Hi. We are looking forward to Jewish Christmas on Sunday, December 22. Arrival time 5:00 for a glass of wine, dinner at 6:15 at Pine Yard. Back to the condo for cookies, coffee, tea, hot chocolate, hot apple cider.

I wanted to set you up to expect the worst so you will probably be disappointed and say, "That wasn't so bad!" Over the last couple of months or so Gregory has really been "progressing" dramatically and I wanted to to be ready for anything and hopefully be surprised that it isn't as bad as it sounded. 

Will remember who you are but not be able to say your name
Gets easily confused
Cannot attend to more than one person at a time addressing, suggesting, or helping him (You might want to let me take the lead)
Has real difficulties following simple directions like, "Sit down here"
Needs help getting dressed and undressed
Needs help putting on coat and gloves
Is almost totally dependent on me for everything
Has trouble navigating his dinner plate if contains too many items
Eats a lot with his fingers
Can't really put a sentence together
Will try to make a comment and it will end up being a series of "well, but, then, over, here, there" 
without a subject (I pretend to understand what he is trying to say instead of guessing or asking questions)
When focused on one item has trouble getting unfocused
His hands shake, quite noticeably sometimes.
Loud (and sometimes not so loud) noises startle him
I have to monitor his bath-rooming and assist him when he does 
Gets emotional easily, usually over good things
So far appropriate social behaviors are holding with the exception of his getting assertive when he feels strongly about something even if we don't know what it is

... only to name a few. Love ya,

Michael

Christmas With Friends

We usually spend Christmas with what we call our "Gay Family," a group of 10-12 gay men with whom for the last 35 or so years we have been celebrating birthdays, holidays, and special occasions; traveling to Italy, Spain, and France; renting summer homes and ski lodges; sharing blood family and friends; and just having an all around good time. They say the best family is the one you have created for yourself (not to diminish the value of one's blood family.) This e-mail outlines where Gregory and I are this Christmas time.

Dear Boyz,

First, I wanted to let you know that we will not be joining you for Christmas in Racine ... my executive decision based on the fact that during these last few months Gregory seems to be failing at an increased rate and I have to be "on duty" 24/7/365.

This morning for example I had to help him go to the bathroom, shave, and get dressed. He was thirsty but I had to help him identify what he was feeling and hand him the glass of water. He forgot the order of putting on his underwear and his sweats. Tried to enter his undershirt through the head hold and didn't know how to get his leg into the sweat pants. He no longer can navigate a breakfast tray which I prepare with all his favorites so I have to serve one item at a time and often prompt him on how to use the spoon or even how to eat or drink. Today he seems to think, "Something is not quite right," but nothing is different than yesterday. Maybe tomorrow some skills will return but others will disappear. Some come and go some are gone permanently.

While I have still been trying to keep him active and involved, I have had to make some decisions on what we can do and when. Honestly, my decision about not being in Racine for Christmas is about taking care of me so I can take care of him. I just can't face the extra work of getting him ready, packing us up, driving to and from Racine, worrying  about snow or not, caring for and attending to him away from home during the party, and trying to enjoy myself as well. I know that there would be great support for him at the party, but still. What I (he) need(s) is a quiet holiday at home alone with Christmas dinner and watching "A Christmas Carol." 

We will still be doing New Year's Eve, which is on a Tuesday this year, and hope you can join us. Being at home will make it easier for him (and me.) Arrival time 6:30 for a glass of wine, dinner at Pine Yard at 7:45, back to the condo for cookies etc. Let me know if you can join us so I can make reservations at the restaurant.

Thanks for being there and for your support,
Michael & Gregory

Going, Going, Gone

Over time I have posted lists of: Automatic, intermittent or extinct abilities. Or we could call it "always, sometimes, and never." At this point all skills and behaviors seem to be going or gone. Nothing that Gregory is able to do is automatic without thinking, like pressing the elevator button to go down or like getting a glass of water or like going into the bathroom because he needs to take a pee.

I have described how I will not rush to Gregory's aide immediately but rather let him try to figure out how to do something with which he is having difficulties. This gives him the opportunity to operate in his own time at his own rate and level of understanding. It gives me the opportunity to observe how much he is able to do.

If he does something more often than not, I do not interfere. If he can do something sometimes and not others, I do not interfere unless he really cannot get it this time. When I can tell, or when I think, he has lost the skill, I will help right away and not even ask or assume that he can succeed in the skill. At this point I do not even ask him to do it.

Well as of today:

GONE:
Recognizing need to use restroom although not incontinent.
Toileting clean up process including wiping and flushing.
Getting into shirt and pants.
Eating a normally served meal.
Helping to cook, set up, or clean up for meals.
Ability to go for a walk in the neighborhood by himself.
Taking pills and medications.
Recognizing thirst and knowing what to do about it.
Following simple, on word directions like: "Sit."
Put on coat and zipping it up.
No help with household chores.
Reading by himself for pleasure.
Recognizing that he needs to take a nap.
Cleaning up bathroom after he shaves.
Showering by himself.
Setting up toothbrush and paste.
Answering the house phone.
Using his cell phone.

COMES AND GOES:
Reading the newspaper.
Eating with knife and fork.
Buckling seat belt in car.
Opening car door.
Answering the door when someone knocks.
Opening a door.
Turning lights on and off.
Staying alone while I run down for the mail.
Taking the trash and/or recycle down the hall.

STAY TUNED FOR MORE (the nature of Alzheimer's, isn't it?)






Hurtful Words

When Gregory is having a lot of trouble with getting dressed in the morning, in my frustration I sometimes take over, fully dressing him. Most of the time I am able to do it lovingly but now and then I am mean. I tell him, "I learned how to do this when I worked in the hospital with sick and dying people."

I say it in an even voice but still, the words are hurtful (at least I think they are to him and I know for sure they are to me.) "Isn't it good that I know how to do this? Sick and dying people need lots of help. I am happy to help."

I took a close look at why I need at times to say this. Maybe I am setting myself up for Gregory's eventual death and to cope with his dying a little bit every day, every minute. You know the expression "24/7/365?" I have a new one for Alzheimer's 
"DEATH24/7/365/DEATH"
This morning Gregory came to me rubbing his face, "Something is wrong."
"You need to shave."
"No this is different."
"You need to shave," showing him the electric razor.
"Oh, you are right."

Monday, December 16, 2013

What a Day I Had Today

Gregory has been almost catatonic. Sometimes that happens when a person with dementia is ill or not feeling well. He doesn't seem to be sick so I am not sure what is happening. He had a good night sleep, was up by 10:00 am. Ate breakfast although confused so I served one course at a time instead of putting the usual tray full of his favorites in front of him.

He spent a little time with the newspaper but then went down for a nap and slept for several hours. Maybe his problem is too much sleep. I'll have to keep an eye on that. Because it was so cold out I (we) didn't want to go out for a walk so it's been a sedentary kind of day.

He sat with me at the kitchen counter while I made Rosemary Cashews, Peanut Butter Cookies, and Oatmeal Raisin Cookies and I kept up the commentary. He sat quietly.

At 5:00 he stared at his mug of coffee and plate of cookies for the longest time. I encouraged but to no avail. I tried to help him lift the coffee mug to his lips but his hand was shaking so badly (history of Familial Tremmors in the Maire family) that he couldn't hold the mug and I didn't trust him to be able to. I transferred the coffee to a starbucks carry cup and he did better.

I put several Christmas cookies on his plate but he again just stared at them as if he didn't know what they were or what to do with them. I tried not to take offense as they were home baked by me and used to be his favorites. I succeeded. I offered him some of his "usual" cookies and he said, "That would be nice." and he proceeded to eat them.

He did take himself to the bathroom but couldn't get settled because the ironing board was set up in there and that made the bathroom a new, strange, foreign place in which he needed my help in lowering his pants and sitting on the pot. He just announced, "Yes!" and I am aware of the "Sweet Smell of Success." :-)

The coffee perked him up a little so I am hopeful that the rest of the evening will be better.

Sunday, December 15, 2013

Happy Birthday Daryl

Daryl, a friend of a friend celebrated his 50th birthday by sponsoring a fund raiser benefit birthday party at Davenport's Cabaret and Bar in Chicago. Daryl not only teaches music at Glenview School District #34 (where I taught) but also has been entertaining Chicago for a long while to rave reviews with his comedy, singing, and schtick!

The fundraiser was for the Greater Ohio Alzheimer's Association who provide support to his mother, diagnosed with Alzheimer's and father. Daryl organized approximately 30 fellow cabaret performers to present one number each for what ended up being a two hour show with one intermission.

As one of the presenters, I volunteered to do a poetry reading which would give the attendees an idea of what it is like to live with and love someone with dementia. I also sold my poetry book with the profits going to the benefit. 

Following is the "script" of my presentation:


POETRY READING
By Michael A. Horvich

At Davenport’s
in honor of
Daryl Nitz’s 50th
Birthday

Saturday
December 14, 2013

Happy Birthday Daryl. 
Fifty years old. Sometimes the number looks worse than the reality of it. I wish I could remember what it was like to be so young!

Let me tell you just a little bit about myself, not necessarily in order of importance.

My name is Michael Horvich. I am told I look a little like Santa Claus. I am an educator, administrator, and teacher; retired from Glenview District 34 some 19 years ago, a Lyric Opera supernumerary, an actor, a writer, a poet, a collector, a museum curator, a book binder, a jewelry artist, a gay man, and have been Gregory’s life partner for over 35 years!

How can I describe what it is like to live with someone who has Alzheimer's Disease, or any major dementia for that matter. 

Over time, I have tried to describe and process for myself what I go through on a daily if not hourly basis, 24/7/365.

I have used prose, poetry, memoirs, metaphor, anecdote, description, humor, and tears to try to share what it is like. 

I will try to share my experience with you through five of my poems.

First Alzheimer’s Disease as it relates to the theater. It is called:

A Play Told in a Series of Poems

I have written many pieces of poetry, 
For the most part with favorable feedback,
Chronicling the path traveled with Gregory, 
My life partner of over thirty five years,
Diagnosed with young onset Alzheimer's Disease, 
Ten years ago when he was fifty five years old.

For a next project, wouldn't it be interesting,
To write a serious drama for the stage
In which the audience would experience
What a person with Alzheimer’s goes through. 
And what those who love him endure?

It wouldn't be hard for me to write the play,
Because I have so much material from which to draw. 
The question is, however, who would want to
pay the ticket price and attend an evening of  theater to watch it? 

Who would want to sit through some ninety minutes, with one intermission; 
Of heaviness, sadness, frustration, confusion, depression, tears and at times desperation?

Even if laced with love, compassion, insight, and humor? 
Who would want to pay?
Who would pay?


Next as Alzheimer’s Disease relates to music and dance with a poem called: 

The Dance of Normalcy

Living with and loving someone who has Alzheimer’s
Is like orchestrating an improvisational dance with normalcy.

No music, no planned steps, no assigned leading partner.
Not being able to anticipate turns or circles, or dips or bends.

Defining and redefining normalcy by the moment … or not.
Normalcy for his dance, not mine being the key,

As we live in each other’s world, 
Neither one making sense to the other

But at least we live and at least we love.
And each day … I die.

Would I be insulting your intelligence to tell you that Ménage à trois is a French term which originally described a domestic arrangement, in which three people having sexual relations occupy the same household? The phrase literally translates as "household of three.” This poem is called:

Ménage á trios

Over twenty five years and their relationship was as strong as ever, 
Their love continuing to grow, change, and adjust to the times. 

Same sex love was not fashionable when they first met in the 1970’s.
It was known as the love that dare not speak its name. 

Most churches will not recognize nor bless their love, their union.
Slowly society has acknowledged it out loud 
But for the most part still in whispers.           
Each partner was very much unlike the other. 
He was tall and he was short. He was fair and he was dark. 

He was slender and he was bulky.
He was a recovering Catholic. He was a recovering Jew.

He was calm, thoughtful, and orderly.
He was animated, impulsive, and random.

Often he described him as a “stick:” meaning hard, formed, and inflexible. 
In turn, he described him as a “sponge:” meaning soft, malleable, absorbing. 

Over time the stick became more sponge-like
And the sponge became more stick-like.

One day, ten years ago, uninvited and unannounced,
Unasked, a third partner joined the relationship. 

Alzheimer’s does not discriminate against same sex relationships,
Nor seek permission to join the party. 

So it became a ménage à trois.
Three entities occupying the same household.

Now, he is becoming less, and he is having to become more. 
Now he has difficulty communicating, and he has to tell both of their stories.

Slowly while he has been becoming the back partner in this ménage à trios
And while he has been becoming the forward partner …

Alzheimer’s is becoming the dominant partner.


Fourth, I have been told that it is a brave thing …  for a caregiver to admit that:

His Illness Is All About Me! 

I am his words
I am his memories

I listen to his emotions
I listen to his needs
I learn to accept less
I learn to go where he leads

I try not to expect too much
I try not to anticipate
I respond when I am asked
I respond, or sometimes I wait

I understand his situation
I understand his state
I leave the rest to who knows what
I leave the rest to fate

I know it’s up to me to change
I know he’s doing his best
I will do whatever I have to do
I will put myself to the test

I cry myself to sleep at night
I cry silently within my soul
I feel so very sad and alone
I feel such a deep, empty hole

I live from moment to moment
I live from day to day
I yearn for what used to be 
I yearn for yesterday

I promised to always love him
I promised until death do we part
I will hold him close while he knows me
I will hold him always in my heart

Now … I am his words
I am his memories 


And now a pause for the commercial announcement, as PBS says, with thanks to viewers like you:

If you want to find out more about living and loving someone with dementia, check out my BLOG. Ask me for my card if you want the link and other information about my art and life which also includes Michael’s Museum: A Curious Collection of Tiny Treasures now a permanent exhibit at Chicago Children’s Museum on Navy Pier.

During intermission I will be selling and autographing my book of poetry - Sit With Me A While: The Collected Works. It includes poetry dealing with life experiences, dreams, death, pets, spirituality, humor, as well as Alzheimer's Disease and includes several of the poems I read today. The price is $15.00, with profits going to support the Greater East Ohio Area Chapter of the Alzheimer’s Association.

My final poem this evening is based on Gregory an my extensive travels when he was first diagnosed with Alzheimer’s and alludes to our relationship today. It is called:

Intersections 

We wander through the meadow, 
Sit on garden seats.
We walk in narrow country paths,
Traverse the city streets.

We linger in romantic cafes, 
Witnessing hand in hand.
We venture to places unknown,
Revisit those we had planned.

And, now, as we travel life together,
It is at rare intersections that we meet.
The words just don’t exist anymore,
But with memories and our love, we are replete.

Thank you. And Daryl, thank you for making this occasion possible and Happy Birthday!

Saturday, December 14, 2013

Prayer

Often people will tell me that they are praying for Gregory and me. Other times people will ask us to pray for them or their loved ones. It is not that I mind, it is just that I am not sure "I believe."

When they say they are praying for us, I appreciate the love and understanding they are showing us. When asking us to pray for them, I appreciate the love and support for which they are asking.

We are not religious, we consider ourselves spiritual. We do not embrace any particular religion, Possibly Buddhism, which is more a belief system, is closer to what we do believe in. We do not pray or believe in some outside power taking care of us, we believe that God is within us, is us! I have written about this before.

My usual Facebook response to prayer, which I think serves the same purpose of making someone who has asked for our prayers feel heard is to say, "Sending positive healing thoughts to you and yours."

Recently this request was met by my further thoughts. Perhaps prayer is a way of centering oneself and focusing one's attention so action and/or thoughts can be directed towards new solutions, understandings, actions. I believe that the answer is within a person, not manifested in some outward diety or entity sitting on a throne in judgement of me.

I do not believe that begging, or bargaining, or feeling guilty is what a God would want from us. I think he/she would want us to have confidence in ourselves and know that we have all we need to make good decisions, come to good conclusions, take appropriate actions to solve our problems, to be good people ... or at least to be at peace if the difficulties cannot be solved/changed. And the courage to know and accept the difference?

Friday, December 13, 2013

Memory Care Organizations/People

Every now and then I get an e-mail or a comment from Memory Care Support People or Facilities asking me to share their information with my BLOG readers.  I have decided to include this type of information in a post when I receive it as it may be beneficial to you. I am not supporting or vouching for this person establishment but their information looks good as does their web site. If you are in Toronto check them out!

Age Matters memory and aging clinic in Toronto helps individuals and their families deal with Alzheimer's disease and memory loss. Our goal is to treat individuals who are experiencing memory impairment as they age, and to address the concerns of family members who are coping with symptoms of memory loss in a loved one. 

Dr. David Tal is a specialist in Geriatric Medicine, a fellow of the Royal College of Physicians of Canada and a member of the American College of Physicians. Dr. Tal served 4 years on the board of Alzheimer Society of Toronto, http://www.alzheimertoronto.org.


http://www.agemattersclinic.com/default.php



Thursday, December 12, 2013

From http://www.memorycareformom.com

How Memory Care Is Reinventing Assisted Living

November 15, 20143