A Hard Place To Be

It is half past midnight. I snuggle into bed. I read a little. I close the light. Time for bed. Time for sleep.
I feel the sadness rise in me and try to damp it down. Suppress it. Hold it in. Tell it, "Go away!"
The tears begin. The sobs begin. The shaking. The howling. The gasping. The flood. The tsunami.
So many never-agains. So many for-evers. So many never-to-be futures for him, for me, for us.

I miss my friend, my love, my partner, my soul mate, the only one who really matters to me.
Never to be held. Or rocked. Or poked.  Or joked. In the same way now as then. Never again.
Never to be supported but to support him. Never to calmed but to calm him. Never to be OK again.
Never to ease my pain but to be in pain so strong, so sad, so deep, so insidious, so lasting.

I miss him so much. What he used to be. What he has been. What he could have been yet.
I miss us so very much. What we used to be. What we have been. What we could have been yet.
I miss myself so much. What I used to be. What I have been. What I will yet become without him.
Change is so hard. A rock and a pitcher. A rock and a hard place. Rock, Paper, Scissors. Broken.

The tears continue. The sobs continue, The howling gets louder. The future grieves and so do I.

What Is It That I Do Want?

This seems to be very good advice in my current dealing with Gregory and my paths diverging.

This

Sound Bite

"We've been rehearsing for this for a long time but we didn't know when opening night would be. Suddenly it was announced, 'Five minutes 'til curtain.' and we weren't even in costume and didn't have our make-up on. But when 'Places' was called and the curtain went up, we were where we were supposed to be."

A Funny Thing Happened On The Way To The Memory Care Facility

Eegee, a male Ethiopian assistant on Gregory's floor at Lieberman Center asked if I was Gregory's father! I was honored ... but no comment!

Update

RG,
Hi. Greg continues to settle in. I go every day to visit but only for an hour or two. I am hard at work learning my new role as secondary caregiver. They are getting to know him and how to provide for him. He is content and "spends his day." To be with him is to realize that he is a very different man than he was before the psychotic episode. He is really living in the moment and is happy with that. Today we visited with his companion Alaksh and G was happy to see him. We set up a desk for him, stocked his mini-refrigerator, assembled two lovely lamps - one for the desk and a matching one on his night stand. I am creating a refuge for him but mostly for me and his visitors away from the Fellini environment that is any nursing care center. Day by day...

Fondly,

Michael

Flow Free

Through the ordeal of Gregory's psychotic episode and hospital stay, I realized again that no matter how much I love him, the path with Alzheimer's is his and I choose to walk along side him. For a while I became so intertwined with being his caregiver, I felt responsible for everything that happened to him and forgot this separation of path. Now I am walking slightly behind him. Lieberman Center is responsible for his life, his health, his safety, he keep. I am there to help make it a little bit better, to hold his hand, and to figure out my new role as secondary caregiver. The following quote, which I just came across after some 20 years, applies:

FLOW FREE

He gulped on the last few words and broke into sobs again; and, as I did not appear to have it in me to soothe his pain, I did nothing. You reach a point at which you cannot control the event, so you stand aside and let the hurt flow free.

How Long Has This Been Going On? Ethan Mordden. Page 590. 1995.

More Quimbys

A photo of Sit With Me A While: The Collect Works of Michael A. Horvich, 2010-2011 with poet. Or is it a photo of the poet with his book?

Witnessing

Dear Michael,

It’s about time I tell you what I think of you. I’ve been talking about you with others, and it’s past time to say it to your face.

This is not about your sense of humor, your collections, or your creativity. It’s about your brave conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.

What I want to speak of is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. Your management of your own frustration and disappointment.

When Gregory became confused about dressing, you labeled, and later, laid out his clothes. When he couldn’t figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, a raw comparison to parents celebrating a child’s milestones.

When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn’t work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are, his touchstone. You are the one he looks to for comfort, stability, and anchor.

You’ve always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, I have the time. I don’t need to go anywhere and I can take Gregory with me if I need to run an errand. You were saying, why not care for Gregory at home indefinitely; I have the capability. I don’t think I could ever be that generous.

But one day, that wasn’t enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparedness, you did not panic. You found him a place to be where he is comfortable. He is calm and happy again. Nothing about you changed. Gregory changed.

         Through all of this, you also cared for your extended family and friends, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgement, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.

I am honored that you include me in your circle, and I don’t know what I do to deserve it. I do know I need to reflect on how I can be more like you.  

I’ve told my children, a good friend should be someone who makes you want to be a better person. You are a good friend!

I can only aspire to be in a relationship like the one you had with Gregory all those years. What I can do is to try to be more patient, more thoughtful, more devoted, as you have with Gregory. Because of your example, I am making an effort to make more time, take more time to think about how I can help them. Your influence improves the world.

You may not be a saint—but you may be a minor angel. 

Love Pat

Quimby's

My "Slim Volume of Poetry" called SIT WITH ME A WHILE: The Collected Works of Michael A. Horvich, 2000-2011 is now available at Quimby's, 1854 West North Avenue, Chicago as well at online at

http://www.amazon.com/Sit.../dp/110539932X/ref=sr_1_2

Quimby's is an independently owned bookstore that sells independently-published and small press books, comics, zines and ephemera. We favor the unusual, the aberrant, the saucy and the lowbrow. My book will be on the "New Releases" table as well as with "Chicago Authors." Thanks Quimbys!

Written by Gregory's dear college friend and more (and mine for the last 30+ years.) A tribute to me and remembrance for Gregory. Thank you John!

Heroes’ journeys are to be sung, right? This is as close as I can come. Michael has been my college roommate’s partner for 37 years. That isn’t what makes him heroic, although God knows 37 years with someone is an accomplishment worth applauding. But for 27 of those years Michael had little need for heroism, he was just plain lucky. He’d found a partner he adored, and that partner – Gregory – had one of the greatest minds I have ever encountered. But then, ten years ago Gregory was diagnosed with early onset Alzheimer’s disease. Alzheimer’s has eaten Gregory’s mind and spit out a shell. Maureen and the kids and I had a Skype call with the two of them last week that was devastating. But not as devastating as life has been for Michael, who this week had to finally put Greg into a facility from which he presumably will never emerge. He can’t talk, not really. He can’t deal with too many different kinds of foods on his plate. There is in fact very little he can do for himself, and Michael has seen his role change from lover to companion to caregiver – and now, to visitor. Theirs was a beautiful life together, and what Michael has sacrificed to keep Gregory safe and comfortable through this decline is unimaginable. It is both a beautiful and important thing that Greg and Michael were able – finally – to marry before Greg’s mind left the building. Really, no one has ever been loved better than Michael loves Gregory. And what, really, is more worthy of song than that kind of love?

Oh, Gregory. Oh, Gregory

Overwhelmed with sadness, loneliness, and tears.
Speakers turned up to blast. Tears set at flood.


To hear song with Mandy Patinkin


ALWAYS

Everything went wrong,
And the whole day long
I'd feel so blue.
For the longest while
I'd forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I've found you at last - 

I'll be loving you always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.

Always.

Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Dreams will all come true
Growing old with you
and time will fly
carrying each day more
than the day before
'til spring rolls by
then when the spring  time has gone
then will my love linger on 

I'll be loving you, oh always
With a love that's true always.
When the things you've planned
Need a helping hand,
I will understand always.

Always.

Days may not be fair always,
That's when I'll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,

But always.

Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Last Daily Update

UPDATE 01/12/14

LAST update for a while as Gregory and I continue to settle into our new lives. He is doing well at Lieberman Center, adjusting to his new surroundings, slept well, remains calm, tells me (once again) how happy he his, no longer angry or agitated (and without use drugs!) Is slow, a little unsteady on his feet, somewhat unaware of his surroundings but asks no questions. Quickly becoming floor staff favorite.

When I arrived at 2:00 today, he was watching (with a group of 12 or so people) "South Pacific," which is his favorite musical, on the large screen TV. We visited in his room and walked around the facility for exercise. 

Next week I will begin to personalize his room. I am adjusting to being "alone" in the condo as well as in my life (with so many supportive friends and family.) I can look forward to visiting him without any of the responsibilities of caregiving, just the good times!

You are welcome to be in touch with me again and to visit him if in the area by contacting me first. Love you all. Thanks for being there for us! 

Check this BLOG for continued thoughts, experiences, insights, poems, and progress etc as Gregory''s journey with Alzheimer's continues and as I continue walking on the path with him only a little further behind.

Laughing into Tears

Crying is so much like laughter and laughter is so much like crying. Sitting with Gregory at the hospital I found that we would laugh together with tears right behind. Emotions Emotions go away. Come again another day.

In some way I am feeling numb again, which I have experienced at various stages in the progression of Gregory's illness. This time it is as if he has died and in some ways he has. There are a lot of "never agains" and "forevers."

He will never be able to come home again. He will never visit the condo again. We will never be able to decorate for Christmas at home. Many traditions are gone and over. The kitties miss his being here and he will never be able to take a nap in the bedroom with them ending up in his lap asleep and purring. Dinner parties? Overnight guests? Holidays? Birthdays? Grocery shopping? Sitting in the TV room? and on and on.

Slowly I will get used to living alone. Last night I panicked three times when waking up, realizing that he was not in bed with me, afraid he had "wandered," and then realizing that I didn't need to worry about where he is.

As you know, I do not believe in prayer, but it seems anyway appropriate to say that I just hope that he is able to settle into the Lieberman Center and that he is not aware of what his surroundings really look like.

Update 1/11/14

UPDATE for GREGORY 01/11/14: 

Continued calm, good night sleep, more alert today. 

Transferred to Lieberman Center Alzheimer's Floor at 4 this afternoon. Transfer from hospital went well. 

Met G at his room, said our goodbyes for the day, and sent him off to the dining room. 

Even though alert he is probably not aware of his surroundings or what is happening. He never asked about the hospital or "Why am I here?" He was accepting of the situation without questions. 

I'll visit again tomorrow, bring a few more personal items, and maybe have dinner with him. 

On Monday I expect I will meet with his doctor, social worker, intake, and psychiatrist. I anticipate several weeks of adjustment before he is ready for any visitors. 

Based on his recent rapid decline, I really do not know who Gregory is today, what he is thinking, what he is able to do or not do. I expect this will become clearer as he settles into his new space. 

Thanks to Robyn G who helped get me on the right track for getting help for Gregory and to Roger Z who has been with me since Friday afternoon, 

Again thanks to you for being there and for giving continued privacy for G and for myself. 

Fondly, Michael

Latest Developments

UPDATE 101/10/14: Gregory had another calm day. He did it on his own with out a "sitter" which was important. 

Not sure if you are in tune with the speed of the events or the decisions that I have been making so I hope this doesn't take you too by surprise. I have been able to get Gregory into one of the best Alzheimer's Care Centers in Chicago. Lieberman Center. It is part of the Council for Jewish Elderly. It did it in 4 days, under the best of circumstances this is not an easy feat. 

He will be released from the hospital tomorrow morning and I will be at the Center with a smiling face to welcome him. We will spend the day, if he is OK with it, helping him get settled in his new home. 

The spin I have been giving it is: "We have been rehearsing this for a long time but didn't realize that Opening Night would be so soon. Curtain in 5 minutes and I am not even in my costume."

It is time, however. His doctors, the hospital, social workers, psychologists, family, friends who are professionally knowledgable about dementia, and me (in my heart as well as based on my intellectual research and understanding) agree that it is time.

The center is close to home. Gregory will be well taken care of, safe, able to live in a more comfortable smaller world, and I will be able to continue to be with him under happy conditions without the difficult times. Better for him. Better for me.

I am devastated I am celebrating. I am sad I am joyful. I look forward to my new caregiver role as well as to the beginning of my new life. I miss him until it aches but I am happy for him as well.

Again, please give me some space, please avoid replies, avoid requests. You are helping just by being there and sending us your love! This is a period of healing for me and I know for many of you who love Gregory like I do! We can begin personal conversations again soon, but not yet. Fondly, Michael

Update 1/09

Sorry (not really) that I have been absent on the BLOG but it has been a hectic time since the last post on Tuesday.

Gregory has been in a regular room at Evanston Hospital with a "sitter" since Tuesday. He seems more calm but they are still working on leveling out his sedative drugs. He is eating well and sleeping well. Yesterday and today he acknowledged my presence, and responded to my "I love you's. He has been cooperative with hospital staff. (Who have been wonderful.)

I believe I have found a great place for him to move to for an assisted living situation. Been on the phone and making decisions until I forget who I talked to and what we said.

Made of list on the computer of all the important information I needed to remember and have as reference and forgot it at home when I went to visit him this afternoon. Oh well. At least it is all down and in one place.

Will keep you in touch with our progress and more details.

A Turn of Events

As you have been following Gregory's continuing journey with Alzheimer's, you will be aware that within the last few months the journey has been getting increasingly more difficult. This last two weeks has been very difficult with his having crying bouts, major confusion, restless nights of sleep, more difficulties eating, etc.

Up until now the Alzheimer's seems to have provided a buffer allowing him to be shielded from the day to day skills and memory losses and to live a calm, happy, contented life. That has changed during the last two weeks with increased bouts of depression, upset, crying, confusion, aimless wandering, defiance, and some minor aggressiveness.

The last week has seen periods of my not being able to comfort him, calm his upset, direct his activities, etc. It is as if the Alzheimer's has been running out of control. Up until now I have been able to support Gregory is a way that helped him keep calm.

This morning, after three very difficult days; he would not be calmed, was very angry, would not let me help him. For lack of better description he turned his discontent, frustration, and hatred on me, wouldn't let me come near him, didn't think he could trust me, and became fairly violent. (Obviously I did not take this personally knowing what Alzheimer's can do!)

The measure of taking action was "I was afraid for him and myself" so I called 911. Not long after police officers, paramedics, and an ambulance crew were at our door to help. Interestingly enough Gregory was relieved that someone else had come to help protect him from me. He cooperated with them getting him on a gurney, into the ambulance, and off to the emergency room. I followed in my car.

When I got there he was calm, but my arrival excited him again. They gave him a sedative to help calm him down, I left the room (knowing he was in good, caring hands,) and routine blood and other tests were done to rule out extraneous infections and other causes for the spike in "craziness." All of the test results are not yet back.

I am currently back at the condo for a few hours quiet time, Gregory is with his Companion Alaksh and was happy to see him, Gregory isn't as upset with me right now, and he will be in a regular room over night at the hospital with a "sitter" from 11:00-7:00. Further observation and planning will take place tomorrow.

I'll keep you in touch.

X-Rated Alert: Do Not Read If Sexual Activities Offend You

Gregory and my love life consists of climbing into bed and holding hands. Loving, caring,   and tender. Lasts longer than the real thing.

Hard Times

Love, Valor, and Compassion

I remember a long time ago when the guys were talking about "Love Valor and Compassion." Don't know if it was the play or the movie. Some of them said it was "yucky" that the male lovers were grooming each other: nose hairs, ear hair, etc. Gregory and I have always been comfortable with each other's human nature and mutual grooming, shitting in the room with the other shaving, etc. Today I lovingly thought, "If I used to fuck that ass, I might as well be content wiping it as well!"

I minorly apologize for the above if it caused offense but it is part of our reality and yes, Alzheimer's does not discriminate against same sex couples, which is also our reality! 

Was just going to share the above with a friend but then got going with itemizing the changes we are going through. Don't know why for sure, especially after the resent UPDATE, but will make an excellent e-mail and I can add it to my BLOG. Writing is my way of processing, documenting, and currently living.

Things continue to deteriorate so fast that I cannot keep up and an not sure what is the best way to proceed. I have an appointment to talk with his neurologist's social worker and honestly am continuing (with more urgency) to research memory care facilities. Last night we tried to watch Downton Abby but he got upset, couldn't tell me why, but could tell me he didn't want to watch it. 

His eating is getting harder and harder and during a meal he seems so distant or confused. Like yesterday he stirred his oatmeal for what seemed like forever and I kept having to suggest he eat some. At one point I had to show him "how to eat some." He did a little better with his pasta and meatballs but often brought an empty fork to his mouth. A new perseverative behavior is cutting his food into tiny tiny pieces before eating them.

He no longer can sit in front of a breakfast tray because the number of items is overwhelming so I serve one course at a time. Things he used to love he turns his nose up like smoked trout on a cracker. He seems to have stopped enjoying his evening coffee and cookies. Popcorn is no longer important while watching TV. Meals are no longer enjoyable times but difficult and often upset times with his tears.

He sits and stairs at his morning newspaper front page only. He paces the condo. He no longer looks at the photos each day on the perpetual architecture and the perpetual world art calendars but I continue to turn the page each night in anticipation of him doing so each morning.

A night or two ago he was up for several hours in the middle of the night worrying about something "red?" I can hardly do anything because he cannot occupy his own time and needs someone. Often he sits on the bench in the bedroom while I work at my computer.

He talks to himself. He startles easily. I'll say something to him or suggest something, he'll say "Yes, OH, OK." but continues to do what he was previously doing. This morning surprisingly enough he put on and buttoned his own shirt and jeans but now is panting and moaning from exhaustion.

He doesn't have associations with even the simplest directions: Sit down. Sit. Come eat. Pull your pants down. Come here. Stop that. Pick up your fork.

Often he is not at all present, is distant, is gone. And I sit by his side and wonder where he really is knowing there is nothing I can to to help tether him to me or to life. The other day when he was feeling what I would call the Cloud or Fog of Alzheimer's, he told me he just didn't know what was happening and that he thought he was dying. 

Last night we had a lengthy (although nonsensical but filled with urgency and emotion) conversation. Periodically from his "upset periods" with crying etc, I get the feeling that he is once again aware of who he was and what he has lost architecture-wise, piano-wise, relationship-wise, self-confidence-wise, ability-wise. He cries and shakes and looks so pained. I can only hold and rock and mutter soothing thoughts like "Everything is OK. There is nothing to worry about. I am here for you. Everything is good. Everybody loves you."

Where will the next Moment take us? Maybe I shouldn't be thinking that because that makes the moment permanent and it is already past!

Circular Thinking

I live my life in circles. Especially with so much time taken up by being responsible for two lives, my own and Gregory's.

The Morning Cycle: get up, let the cats out of the bathroom, drink coffee, help G toilet and shave, help G get dressed, start my computer, give G toast or juice to start, drink coffee, sit at my computer writing or maintaining our life, make breakfast for G, have toast myself, begin the day by noon.

The Day's Cycle: turn on the lights, raise the shades, brew the coffee, bring in the New York Times, spend the day, prepare dinner, clean up dinner, watch TV, read aloud, go to sleep.

The Cleaning Cycle: turn on the lights as I pick up old newspaper and put in recycle bin by door as I bring in the current newspaper and put on Gregory's table as I pick up my coffee and add the milk as I take it into the bedroom and place on the computer desk as I turn on the bathroom heat as I pick up the old cat food bowls as I bring them into the kitchen as I pick up the glue from the counter and return it to the TV room as I straighten the couch pillows as I take away last nights soda glass as I return it to the kitchen as I go by the hall closet and get the stick vacuum as I take it to the bedroom to pick up the sock lint on the carpet as I take it into the bathroom to vacuum up spilled (or kicked out) kitty litter as I return it to the closet as I reach into the washer and put the wet clothes into the dryer as I go into the bedroom to get the dirty clothes as I put them into the washer as I add soap to the machine as I go into the kitchen to add "soap" to the grocery list as I look through the coupons as I put them on the pocket table in the front hall as I pick up the mail and bring it into the bedroom as I open the mail and drink coffee as I put the opened envelopes into the garbage pail as i take the pail to the kitchen to empty it into recyle as I pick up the "yuck" garbage and take it into the bathroom to empty the kitty litter filled zip locks as I take the "yuck" and the recycled newspaper down the hall to the garbage room and I continue to cycle through the condo and through my day, picking up one thing, taking it to another place while picking up the next thing and taking it to the next place, and so on and so forth until everything is done and in its place.

Each Moment is the Universe

At bedtime I have been reading aloud for Gregory and me a book by Dainin Katagiri called Each Moment is the Universe. So far it has given me solace in knowing, shared in my own words:

Life is but a moment
Death is but a moment
Sorrow is but a moment
Joy is but a moment

Everything is impermanent
Nothing has substance
Moments happen so quickly
That by now it has passed

So all being equal
Which they are in Zen
And the way of being time
I am content

Update on E-Mail Update

My e-mail has been "dinging" off the hook with so many supportive replies to my update broadcast on Gregory and my continued journey with Alzheimer's. Over the next few days, I will be sharing some of the comments (names will be changed to protect the innocent :-)

Meanwhile I am afraid that we might be the closest that we have been to  having to find a Memory Care Home for Gregory. It may or may not be imminent depending on what course the illness next takes. I am still able to keep up and will continue to do what I have to do but at times the presenting situation is so strange that I do not know what to do or what the best course of action is.

For example his recent crying and upset jags. For seemingly no reason he gets upset and is not easily calmed. He does calm down eventually with soothing comments like: Everything is OK ... Everything is good ... love ... happy ... Everybody loves you. etc

One an episode took the direction of his feeling that he was a bad person and/or had done something wrong. I assured him and he perked up. "Really?" he replied. "OK?" "Honest?" etc he was able to get out as he was able to renew his confidence in his worth.

Another episode (and I am trying to guess at meanings here from his "mumblings") had to do with either having (in me) the kind of relationship and love that is very special or needing and hoping to find that kind of social love. Some of the mumblings sounded like him not being gay ("having a love like that.")

Early this morning we spent from 7-8am dealing with something "red" and "people out there"instead of sleeping. I finally got both of us out of bed and we walked around the condo talking about the snow outside the windows and how cold it is. He finally settled down and we went back to sleep.

I am concerned that I do the best for Gregory and am not sure what that might be and/or if my emotions and love for him are getting in the way of intelligent decisions. I would like to believe that I am able to separate my emotional from my intellectual and that the right side will win out. I know I have friends who will "take me in hand" if I loose my perspective!

I will be talking to a Neurological Social Worker in the next few weeks and Gregory is switching to a new neurologist who specializes in Alzheimer's. (I was pissed when I recently learned that his current doctor who was a "replacement" for one who left is a specialist in MS. Good for MS but not for Gregory?)

Meanwhile I am taking a day at a time and surviving. Not necessarily "living" but at least "surviving."

AN UPDATE E-MAIL

Dear Family and Friends,

We spent a quiet Christmas Eve and Day at home and wish we could have given each of you a personal hug and a big, festively wrapped gift of something magical, tangible or otherwise, that you have always wanted for yourself.

New Year Eve was spent quietly as well, due to the cancelation of our annual party so friends could stay at home, warm and cozy and safe, during a major snow storm.

I haven't been sending updates about Gregory's and my Journey with Alzheimer's because for a long while things have been, well,  just ... "even." Also, by keeping a BLOG, I have not felt the need to update or retell the stories over and over when we talk on the phone or meet in person because you can keep tabs on us with the BLOG if you choose (regularly or periodically.) 

Since the beginning of my BLOG "m horvich cares about alzheimer's" in July of 2010, there have been over 657 posts with close to 23,000 hits. It is humorous, sad, trite, profound, and deeply honest. I am grateful that perhaps I can help my readers keep up with our life and also for some readers, I can provide the ability to learn from my experiences and help them to realize that they are not alone with this insidious disease. 

http://mhorvichcares.blogspot.com

I wish that this could be a routine Christmas Letter which talks about our travels (we didn't go anywhere,) our children and grandchildren (we have none,) our pending surgeries (none,) our pets (one died, two new kitties added)  etc. ... maybe written in poetic form? But now-a-days our life with Alzheimer's has been progressing at such a rapid rate that I feel it is important to share with you where and who Gregory and I are today. 

Gregory seems to be mostly unavailable to himself and to those of us who love him. My main aim since Gregory was first diagnosed some ten years ago has to maintain a sense of normalcy, order, calm, and safety for us. 

Peace at home has been more and more difficult for me to provide, not for want of trying, but for the insidious manner of Alzheimer's Disease. Gregory is more confused more often, seems "lost," and cannot tell me when he needs something or when something is troubling him.

He just gets upset and I try to guess the rest. Sometimes I can calm him down and distract him but recently I have not been as successful so I just hold his hand while he cries or is upset or depressed. He has been exhibiting some newer bizarre behaviors which I have not experienced with him before.

While being out and around has always a little more difficult, being out and in social situations is becoming more and more difficult if not close to impossible. His using the bathroom and navigating the food on his plate and my fear of the unexpected and his safety have become more of an issue when we are away from home.

I like to say, "On a scale of "Horrible" to "Horrible," I would rate our situation as "Terrible. (I have been saying this for a long time, but now ... things have become more horribly terrible!) I have an appointment with his neurologist and a social worker to discuss next steps, medications, and emergency precautions, etc. 

We have a Northwestern student, in for 15 hours a week to provide me with some "get away time" and to provide Gregory with  a companion and distractions other than those I am able to provide. We are grateful to him for the gentle care he provides.

Meanwhile, somehow, we carry on, try to enjoy life, wake up each morning and go to sleep each evening. In case we see you or talk soon, I wanted to set you up to expect the worst so you will probably be disappointed and say, "That wasn't so bad!" 

But it is. I suspect, while trying to be optimistic as well, that 2014 will be quite a different/difficult/major change year for us. People wish us Happy New Year, I reply with "Thanks," but my heart aches.

Here are just a few of the things we face every day: GREGORY ...

•Might remember who you are but not be able to say your name

•Gets easily confused and frustrated

•Cannot attend to more than one person at a time addressing, suggesting, or helping him

•Does not comprehend most helping words

•Often physical demonstration doesn't work

•Doing for him by others is the only way sometimes

•Has trouble being in noisy, busy places 

•Has real difficulties following simple directions like, "Sit here" or "Eat."

•No longer understands orientation directions like "On, Off, Up, Down, Under, Over, etc

•Needs help getting dressed and undressed

•Misses parts of his face when he shaves

•Has taken to putting underarm deodorant on his face if I do not intervene

•When out needs help putting on, taking off, keeping track of coat and gloves

•Is almost totally dependent on me for everything all the time

•Has trouble fastening his seat belt in the car

•Cannot do math, write, or sign his name

•Has trouble navigating his dinner plate if it contains too many items

•Has difficulties managing a knife and fork

•Eats a lot with his fingers

•Doesn't see items sitting in front of him

•Asks if the remainder of the food on his plate or beverage in his glass is his

•Has trouble lifting a glass of water or mug of coffee without shaking

•Is more clumsy and less sure-footed

•Can't put a verbal sentence together but rather constructs a verbal string of nonsence

•May or may not understand your sentence

•"Familial Tremors" have always been a part of his family's history but his hands now shake badly

•Sleeps a lot more, 9-10 hours a day with at least one or two naps a day

•Will try to make a comment and it will end up being a series of connectors without a subject 

•Will wave his hands saying, "You know, you know" when being unable tell you something

•When focused on one item locks into it and is unable to unlock when pointed in another direction

•Is easily startled by loud (and sometimes not so loud) noises or sudden moves

•Needs monitoring with his bath-rooming and assistance in all aspects of the activity

•Does not recognize his body's signals for having to go to the bathroom

•NOT incontinent because I send him to the bathroom every couple hours

•Cannot shower by himself and needs assistance soaping up and rinsing off

•Gets emotional easily, usually over good things

•Gets emotional easily, lately over sad things or when 

•Seems more aware of his difficulties, losses, and sadness

•Is depressed, listless, and undirected more and more

•So far keeps appropriate social behaviors 

•Sometimes says hi to strangers on the street

•Gets assertive in his hand waving when he feels strongly about something (good or bad) 

•Cannot express what he is feeling, just gets upset

•Is NOT catatonic but often sits and stares into the distance

•No longer has either receptive or expressive language.

•Seems more quiet, distant, and lost

•Is mostly not part of the group when with company

•Is able to do very little to entertain himself or occupy his time

•No more walks by himself

•No more reading, even if there is comprehension doesn't understand "mechanics" of using a book

•No more telephone conversations, just listens when I am taking and he is on the other phone

•No more looking through and appreciating architecture picture books

•Doesn't seem to get much out of his daily read of The New York Times or magazines

•Forgets to put on his reading glasses when trying to read or gets them on upside down

•Has trouble following me so I have taken to holding his hand on the street

•Got lost the other night when following me down the condo hallway towards the elevators

•Cannot use the house phone or his cell phone

•Often cannot figure out how to open a door by pushing or pulling or use his key

•Hasn't been able to use a computer for a while now

•Doesn't realize he is thirsty but I can tell by the movement of his lips in a certain unconscious way

I do not want to make our situation seem more difficult than it is but I don't want to gloss over what I go through 24/7/365. I cannot imagine for sure what Gregory must be feeling or thinking. Previously he was happy and content, now he seems more agitated. It seems to be getting a lot worse on a daily basis.

You cannot imagine what I go through as his caregiver and at times I cannot imagine what I am going through because the situation becomes quite bizarre and changes so quickly. Often I cannot fathom the behavior Gregory presents let alone know how to deal with it.

A little bit of positive:

We wake up each day, somehow renewed, and sally forth to meet the day

While a struggle, we still go to movies, opera, musicals, and legitimate theater

He goes shopping for groceries  and runs errands with me

He tries to read (or at least look at) the New York Times

I read aloud to him at night before we go to bed

We eat out and he enjoys good food (when he can figure out how to eat it)

I enjoy cooking dinners home and he enjoys eating them

He enjoys being with friends and family (even though quiet and distant at times)

He enjoys painting almost every Tuesday with his teacher Nancy http://www.nrosen.com

He enjoys spending being with his "Companion," Alaksh.

Our two kitties (now cats) Gigi and Emms are the love of his life

We both sleep well

We are both healthy

We both love the condo and how we live in it physically

We have good neighbors, friends, and family

We snuggle often

We hug and kiss

He still tells me he loves me

And I tell him that I love him.

NOT easy for us to be going through this, NOT easy for you to read about it.

You may be thinking: 1) "How do I reply to an e-mail like this?" and/or 2) "How can I help?" 

Easy stock answers that we are OK with:

1) Hit COMMENT and let us know you received this. You can empathize with us and think of us. You do not need to make any further comment and there is probably nothing you could say except that you love us.

2) Know that just by being there, and by being you, by respecting us, and by being patient with both Gregory and me when we do get together ... you are helping already. So thank you.

We love you.

Michael and Gregory

P.S. This is a direct link to photographs of Gregory's paintings for 2012/13.

https://plus.google.com/photos/105807529710777221472/albums/5948444230716235857

(Photo 2012)

A Difficult Episode

After my therapy session, I went to a neighbrohoood restaurant for a sandwich. Alaksh called me to ask me to come home because G was crying uncontrollably and he couldn't settle him down.

Luckily I was at "Pret" which is just downstairs from the condo and got back in 5 minutes. G thought he had done something terrible, was crying and saying in bits and pieces "You are going to hate me, no wait everyone, they were all there. He was very upset but naturally couldn't tell me what it was really about. 

So I got him to lie down in bed, I lay next to him and assured him: "Everything is OK. Everything is good. Everything is calm. Everything is happy. Everybody loves you." etc etc etc adding everything I could think of that was loving, peaceful, happy, and good. 

Both cats came to be with us and helped G get centered again. Gregory dozed for a while and then lie there thinking while I was working at my computer.

I chatted with Alaksh to see what was going on before the episode to see if we could figure out the triggering event but nothing out of the usual had happened. Often things are not what they seem so without needing any logic behind the cause of the episode, the bottom line is that Gregory was upset, had a tough time calming down, finally did calm down.

Moments come and moments pass. I have learned to get over the in-between. Meanwhile I am wondering about the accuracy of my use of lie, lay or should it have been otherwise?

Being Genuine

Shambhala Publications

GENUINENESS: THE WARRIOR’S SAFETY PRECAUTION

Everything reverts back to being genuine. Whenever there’s a gap, the only way to be a warrior is to refer back to the genuineness, which is somewhat raw and so tender and painful. That is the saving grace or the safety precaution, so that the warrior never goes astray and never grows a thick skin.

http://www.shambhala.com/smile-at-fear-2.html

2013 - 2014

As one year leaves us
     No noise makers
     No fireworks
     No champaign toasts.

And another arrives
     Only sadness
     Only loss
     Only tears.

Where is the mistletoe
Where are the kisses
Where are the hugs
Where is tomorrow?

Ring in the New Year
     Leaving
     Fading
     Disappearing