An E-Mail

This is a copy of the e-mail broadcast I just sent to family and friends:

Dear Family & Friends,

Sign of the times to use Facebook, Text, and E-Mail to let people know that a loved one has passed. 

I hate it, but it does serve the purpose of sharing with you that Gregory died very peacefully last Sunday, October 4,  after 12+ years of living with Dementia/Alzheimer’s and a very short illness.

If you are in town, and sorry for the short notice, there will be an open house to celebrate Gregory’s Passing at the condo this Sunday, October 11 from 2:00-5:00. We are at 807 Davis Street. Parking available in public parking attached to the building.

Gregory did not “suffer” with Alzheimer’s. That is really a very inappropriate description to use for anyone diagnosed with Dementia/Alzheimer’s. He LIVED and lived well … beyond the “diagnosis.” It was not always easy to do so, and at times we held on for dear life through our roller coaster ride. 

Although he slowly lost physical, cognitive, and mental abilities; we were able to compensate and be optimistic and happy and enjoy life together as well as share time with so many of you.

No matter how the illness progressed, Gregory was always fully present in Spirit and he continued to be loving, kind, gentle, patient, compassionate and easily spread love to everyone with whom he came in contact.

When I said my last goodbye to Gregory, after he had been in a coma for four days, I kissed him on his open mouth and he was able to close his lips and push back. He gave me a final kiss! There is magic in life … and there is magic in death. And I am doing well. Not sorry but rather happy. Sad, yes, but happy and centered and ready to re-discover again who I am alone, with Gregory now being my Guardian Angel. 

He was NOT a “victim” of Alzheimer’s … He was a HERO!

Minor apologies if you already know of Gregory’s passing via a personal phone call. I tried to call as many people as my voice would hold up for. Or you may have found out via “technology” which is a little impersonal but none-the-less. And finally if my database is not as perfect as I would like it, you may have received several dozen e-mails :-)

A number of people have asked so here it is:

Contributions may be made to:

The More Than Ever Education Fund (MTE)
Created by Gregory Maire and Michael Horvich
and administrated by La Casa Norte,
a non-profit supporting homeless youth and families.

Make your check payable to La Casa Norte (MTE)
3533 West North Avenue, Chicago 60647
or donate online at http://www.lacasanorte.org

For more information feel free to e-mail or phone me.

On Sep 22, 2014, at 8:45 AM, Susan Wiseman wrote:

Michael 

Thinking of you!  Read one of your last blog entries, and although you write in an upbeat manner, it did make me feel very sad. On a more positive note, we thought of you last week while on vacation in a place called Comala in Colima.

We had the good fortune to meet the director of the Museum of Popular Art.  Suffice it to say that this man has a collection of miniatures that I know would make you green with envy.  They are amazing.  When photos are downloaded I will send you some. 

You do sound well, and I am glad.

Happy Rosh Hashana.  Give Gregory a hug for us.  We think of both of you often. 

Love

S & D

Hi S,

First love to you and to D. Will look forward to seeing the photos of the miniatures you mentioned. I do get GREEN with envy over things like that. Envy doesn't mean I wish the museum to have less but I want to have more! 

I am well and each day gets a little easier to face. Doesn't mean the Alzheimer's has gone away but it has been easier for me as Secondary Care Giver and with most of my life (all be it alone) once again my own. Gregory is doing really well for this moment in time. 

Compared to the past ... well I try not to go there if you know what I mean. But our visits are meaningful and we have a good time when we are together. Lieberman and Manny are really the best thing Judaism has ever done for me (the facility is part of CJE Council for Jewish Elderly.) 

Yes I am still very sad (as you said you were when reading my update) but I have learned to carry that sadness with me as a reminder of the great love I have for Gregory.

Soon,

Michael 

An E-Mail from a Friend

An e-mail from a friend:

Hi Michael,

It's C from S on Central Street!!  I've had a busy morning and around 1 o'clock I decided I was hungry.  I thought to myself "it's a tuna melt kind of day". I walked over to Prairie Joe's to pick up my lunch and as I'm standing in front of the counter I looked down because I though I happened to see your name.  Sure enough, I did!! There was this book of poetry on the counter and I picked it up and skimmed through it.  Sure enough, I saw a picture of you and Greg and I had to hold back my tears.  The title now made perfect sense to me.  I purchased the book because Aydin told me that all of the proceeds go towards the Lieberman RC.  I love you for this. Know that you and Greg are in my prayers. I am looking forward to going home, pouring myself a glass of wine and enjoying the book. 

An E-Mail

Thanks for asking about Gregory, R. Gregory has evened out again, even if at a much lower level of functioning but he is happy and content. My experience with Lieberman continues to prove itself to be loving, supportive, and provision of excellent care. 

While I still grieve and will probably do so for the rest of my life, but I face each day with renewed strength and excitement. As you saw, I just published my second book of poetry, am working on the possibility of creating a second Michael's Museum which will be known as MCM or Michael's Closet Museum: A Large Collection Of Tiny Treasures in a Tiny Space. 

Am repainting the condo, making it my "single pad," and while do not want to be away from Gregory for great lengths of time am planning a future trip to Amsterdam and will embark on a few three or four day adventures, the first on probably to Quebec City. 

I hired a private care person to be with Gregory seven days a week from 11:30 to 5:30. That covers lunch and dinner and the time between. It helps keep Gregory active. While the aides there take good care of Gregory, it is not a social, interactive experience. 

With Manny, he gets extra exercise, companionship and help eating at meals, the ability to go to functions at Lieberman, ability to go down to the library and out to the gardens, watch movies (usually musicals) in his room, have snacks and his beloved chocolates, do music sessions with his iPod and earphones (as set up by Manny,) have massage, read aloud. None of which Gregory could do for himself but with Manny's help is easy. 

Also because Gregory is a "fall-risk" and because cognitively his brain has great trouble controling his legs and muscles, he is confined to a wheel chair. Normally he would have to always be with the "crowd" of other residents but with Manny his time can be more individualized. 

I visit almost every day and take one off now and then when I feel the need. Gregory's condition is much worse but his situation is much improved. My heart is light.

Love to you and N.

Michael

An E-Mail Reply

From niece MB (daughter of Al, Greg's oldest brother:) 
I have been concerned about you since Gregory has moved into his new home. I know they are taking care of him. That will give you time to make adjustments to your life.

Thanks for the kind words. I am doing well. We have been struggling with this for over ten years and the major difference, now that Gregory is in the advanced stages of the disease, is that the concerns, needs, and ability to define new normalcies have been narrowed. 

For the most part the routines and normalcies for Gregory are now predictable whereas during the early parts of his disease, it was a baseball game without rules!

As for my living alone, our relationship was always one of parallel growth. We both had the same interests and friends but maintained our individual interests and friends, and of course the two overlapped at points. So while I have to redefine my new life living alone, I do not have to redefine my life or identity entirely. 

I have had to learn to live in the present moment, as Gregory does, and to see life through his eyes. When I am able to do that, I am happy and content. When I begin to see his life through my eyes, I have more difficulties avoiding crying and grief.

Not sure if there will be a price in the future, but for now I have been separating myself into two parts. When I am by myself and at home I try not to think of Gregory and our past 39 years and when I am with him I try not to think about home and my life and our past 39 years. 

Some Buddhist monks spend a lifetime learning how to live in the here and now, without living in the past or the future. Both Gregory and I have been able to do that. He because of the Alzheimer's me because of my great love for him.

At home I'll keep busy with friends, keeping the condo up, writing, etc but when I am with Gregory, sometimes we just sit and hold hands and that is paradise and enough.

In the beginning it was difficult learning how to let go and become the Secondary Care Giver with The Lieberman Center (and their trained, knowledgable staff) being the Primary Care Giver. 

I am still Gregory's advocate but have begun to know how to choose my "battles." The staff at Lieberman actually listen to and hear what I say, try to accommodate my suggestions and Gregory's needs, but also help educate me when I am out of order or unrealistic in my goals for him.

Gregory's CONDITION is much worse and continues to worsen but his SITUATION is so much better ... so my heart is light.

The Lieberman Community

Slowly I have gotten to know the children and partners of the residents on Gregory's floor. None are as young, none are gay. So while we all have a lot in common, my story continues to be somewhat unique.

GS sits at Gregory's table. She is newly arrived at Lieberman from a home in Florida. Her son H and I met and have been corresponding via e-mail. Not to come out on his behalf but lets just say that we have a lot in common. 

H,

Nice to see your e-mail waiting for me. Turns out that Gregory and I will be going to the April 14th Seder at Lieberman because I am already booked by a "condo friend" for the 15th. Sorry we will not be able to have the "whole table" of friends together. Maybe next time? 

I checked out your websites. Interesting combination: Steel drums for a living, pottery ones for a passion! Would be interesting to hear more.

I have a friend who has been taking classes at Lil for several years, has a potter husband, attends shows all over the country with him, and runs a small pottery shop in New Carlisle, Indiana called "The Potter's Wife." Her husband's site is www.blacktreestudio.com She was the VP of Exhibits when I was involved with the installation of "Michael's Museum: A Curious Collection of Tiny Treasures" as a permanent exhibit at Chicago Children's Museum. Also, another close potter friend is Kaye Yourist http://www.youristpottery.com in Ann Arbor.

See you in the halls,
Michael

FOLLOW UP E-MAIL

H,

Hi. Good to hear back from you so quickly. Just finished watching "Daniel's Room."

http://www.ushmm.org/information/exhibitions/museum-exhibitions/remember-the-children-daniels-story/video Beautifully presented. If you got to http://www.michaelsmuseum.org, you know my fondness for museum presentations of life. Daniel's Room was quite well done. I find that I am too much of a "sponge" to be able to go to Holocaust Museums (one is Skokie as well) or watch movies about it. I certainly am a strong person, as witnessed by the last ten years supporting my disappearing love, but I know when I will be overwhelmed and therefore need to protect myself. Self survival I guess.

Sorry too that we will not be able to be at the Seder all together. I will see you "in the halls" as I never know when I will be there. Gregory's room is 574, I think in wing A? I have Manny with Gregory five days from 11:30-5:30 which provides an active day for him as well as helps make meals more easily spent. Alaksh, a Northwestern Student who has been a companion to Gregory for the last year, covers Thursday dinners and Saturdays. Having this extra help makes it a little easier for me to continue to live my own life knowing someone is with Gregory, especially since he still seems to know the difference. He has not yet slipped into his own world completely away from me but I know the day will come. So I get to visit him almost every day for an hour or two or three and then can leave knowing he is being taken care of not only by the great staff at Lieberman but also the extra help.

I have kept myself busy, as you saw on my site, and I think that has helped keep me sane. For most of the last ten years Gregory was as much a part of my activities as he could be but I did work at maintaining a personal life as well. I enjoy being with him because I love him, not to assuage any guilt or to make amends. I think all children, eventually have to come to grips with their relationship with a parent, but loosing one's soul mate, best friend, lover, fuck buddy, etc is like having a large part of your soul ripped away. It gets very lonely when the only one who really understands you and can "make it all right" no longer is available to you. But my heart is light as I watch through Gregory's eyes. He continues to be happy, calm, safe, and content. That is what allows me to continue to live my life. 

Not to pick on your words so please do not fret, but Gregory is STILL a sweetheart, just at a lower functioning level. I call him my "petulant seven year old" and enjoy when he jokes, or gets stubborn or closes his eyes and mouth when he is finished eating. He still kisses me, pets my head when I help his arm up to that level, and we often cry together as well as get the giggles. I never thought our later life would be like this and of course I wish I could make it all go away, but I cannot. So I make the best of it and both Gregory (we used to talk about his when he was still able to compose his thoughts) and I continue to consider ourselves blessed with supportive family and friends, not too many financial worries, and the continued ability to love and be loved.

Talk soon,

Michael

Michael Horvich
mahwww@me.com

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On Mar 31, 2014, at 1:40 PM, Howard Skolnik <howard@skolnik.com> wrote:

Hi Michael,

 

Thanks for the lovely email. Sorry that we cannot share the Seder together, having a support group makes the experience more enjoyable. Even though my mother will not be aware of the event, I believe that being with her will be more about my wanting to make her feel loved. To quote Ruth, being at Lieberman gives us the opportunity to “heal some wounds,” and I am certainly enjoying having her back in Chicago.

 

I don’t know either of your potter friends, Skinner or Yourist, however, I rarely know anyone’s name, I usually recognize their work. Robert and I call ourselves “gentlemen potters” as we enroll in classes constantly so that we have access to the glazes and kilns. We’ve been together at Lillstreet for more than 12 years, and I go back more than 25 years there. It’s a good place.

 

I don’t know your livelihood but I did check out your web site and I see you are a man of many interests and passions. Could spend hours going from link to link. Suffice to say, I think we’d enjoy an evening of conversation….or 2 or 3.

Did you ever get to visit Daniel’s Room at the Holocaust Museum in DC? Of all the exhibits, that was the one that brought me to tears. Many adults never visit it.

 

Do you have a visiting pattern for getting to Lieberman? Would be nice to catch some time together. I usually run up there on Sat mornings and then Sunday afternoons. This week, Mom may move to another room so I might be there to move her in. Her current room is dark and small. She will be moving to 514C. Where is Greg? Batia is in D.

 

Good to connect here, and in Skokie. I always say hi to Greg and offer some conversation. He must have been a sweetheart.

 

Cheers!

 

Howard

 

 

 

From: mahwww [mailto:mahwww@me.com]
Sent: Monday, March 31, 2014 12:50 PM
To: Howard Skolnik
Subject: Re: Passover at Lieberman

 

An E-Mail to Friends

Dear Susan and David,

Hi. This time of year is usually when PV beckoned. 

Now it's the Lieberman Center at $9,900/month. But after six months we will switch to Medicaid and $60,000 is a small investment for Gregory to be taken care of for the rest of his life! I go to visit almost every day for an hour or two. I have been fixing up his private room so it is a refuge for me, for visitors, and perhaps for him. I know he thinks it looks nice. 

A small freezer/refrigerator combo in black, a black chest of drawers for "kitchen" storage, a small flat screen TV (large ones in pubic spaces,) two nice sturdy chairs, one matching ottoman; a desk running under the window with a plant, framed photos, a coffee table picture book on a tilted stand, a cup with a few pencils and his reading glasses (not sure he knows to use them;) a bed side table (with locking top drawer for me to keep things private,) a dresser, an armoire, a large closet, paintings that Gregory has done on the walls. The bathroom is tucked in as well but a shared shower (since supervisions is needed) is down the hall. 

Yes, I am on an emotional roller coaster. When attending to business I am OK but during the still hours of the night I miss him with my tears. Sometimes visiting him at the Center is OK, other time very difficult. I have compared it to being in a "Fellini  Movie" without any back ground music! I have found that many people do not know Fellini so I have attached a clip. 

The most difficult part is that in daily life it is as though he is dead; the condo is quiet, everything is mine, he will never be here again to share the love we created it with, I sleep alone instead of drifting off together while holding hands. I didn't expect to grow old by myself and that makes me sad as well. I try not to think of what "old age" will be like for me or for Gregory for that matter. Not pretty and certainly no future in it!

On the other hand in my new role as Secondary Care Giver, my life is a lot less stressful, the work load is reduced, and at times "out of sight out of mind." I can get dressed for one, not two. I can clean up after one, not two. etc. I can travel again and continue to enjoy theater, opera, etc. I'll have more time to write and to be creative. Maybe I can be a supernumerary at the Opera again, I have missed that a lot. Who knows what lies ahead but it does feel like there are many doors waiting to be opened.

His family has always been, and continues to be supportive of everything I do and all of my decisions. They go out of their way to let me know they are here for me and to feel loved. I love them dearly as well.

In many ways, this whole experience  of Gregory's being at a memory care center is surreal much, as I said, like a Fellini movie. The stages of Alzheimer's while Gregory was at home were gradual and in a familiar environment. I worked diligently to keep him safe, happy, content, occupied and that worked well up until the last couple of months. We still ate out and attended theater etc but it got more and more difficult.

In the end, I lost my patience with Gregory less and less as it became more and more obvious that he did not have the abilities/skills any longer. His behavior no longer looked bad or selfish or thoughtless (even thought I knew it never was meant ... it looked like it was and was able to trigger old responses. These were quickly stopped with apologies quickly in hand.)

All along, I have continued to develop myself as a person with a life and interests but most of my thoughts and time were with Gregory. Now I have a lot of time on my hands and a life to redefine. I am grateful for so many things and my heart is happy that Gregory is being well taken care of. All for now, as always,

Fondly,

Michael

P.S. This e-mail was written for you two but I will turn it into a BLOG.

E-Mail to a Friend

N

Gregory had a great day painting after two weeks of not being there. I didn't mean to be mysterious when we arrived but I didn't know how to respond to "How are you?" Simple question but no good answers. Lately I have been very sad, more lonely, and even with all my creative endeavors ... bored with life. Day by day G has more difficulties with more things. I am not sure that there is anything he can do consistently on his own anymore.

Maybe it will make me feel better if I "unload" a little but also wanted to bring to up to date on who Gregory is now a days besides the handsome, loving, kind, good, person he has always been.

He can barely get himself dressed and undressed and soon I will probably have to take that over totally for him. About 50% of the time he needs a reminder about how to brush his teeth. Showering works if only because he does so when he goes swimming with the companion so I don't have to deal with that.

Bath-rooming gets more and more confusing for him. At least he recognizes the urge but sometimes it takes a "Do you need to go to the bathroom?" from me when he is pacing around the bedroom while I am working at my computer. He needs coaching with cleaning up after a bowel movement. (Sorry for the bluntness.)

Reading at night is almost out of the question. If he does't loose his place in the book he seems to get hung up on one page not realizing that he needs to turn to the next page to continue reading. He "pours" over his newspaper each morning but I am not sure if or what he gets out of it comprehension wise.

Theater, opera, events etc are getting more difficult for me to navigate for him. Eating out is difficult. Bath-rooming at events is difficult. Timing is difficult. Falling asleep during the performance is somewhat problematic. Not sure if he is able to follow the story, also not too problematic but it means we cannot discuss the event afterwards.

Watching him eat is painful so dinnertime is not a fun-time. He is confused by what is on his plate, how to eat it, how to cut it. He uses his fingers mostly (OK by me) but I may have to begin cutting his food. He cannot help with prep or cleanup so I do it all.

He is not at all available to me emotionally, intellectually, sexually. He cannot communicate except by showing up where I am and looking confused and stumbling over words. Sometimes he will beckon and say, "I can show you." But then he cannot explain when I go with him. I do all the talking all of the time. I do not think he has spoken a logical, comprehendible, complete sentence is months (maybe years?)

When I am with friends I have to remind myself not to talk all the time to fill space, not be in charge all the time, not make all the decisions, not monitor everyone's behavior!

I continue to give up more of who I am and what I do so I can be available to help and entertain and feed and dress and maintain him 24/7/365. Sleeping is relatively OK but he is up and down during the night so I sleep lightly to be there for him. (And now and then the cats get crazy and keep me up a good part of the night.) Luckily he is sleeping longer and more and I can take naps. I have an alarm on the bedroom door so he does't wander during the night if I do sleep deeply, there is one on the closet in case he looks for the bathroom in the wrong place, there is one of the front door in case I want to nap during the day.

For now he knows that he doesn't cook, make his own coffee,  do the laundry, take out the garbage, drive, use the garbage disposal, help himself to snacks, prepare meals, clean up after meals, put dishes in the dish washer or put them away when clean. This makes it a little easier for me but that means I DO IT ALL. If he did try to do these kind of things he would most likely mess them up and cause me more problems. Or he would break things. Or he would loose things. Or he would hurt himself. 

With the door alarms, and the fact that I can "lock" most of the kitchen appliances my life is a little easier but sometimes I worry that he will FORGET that he doesn't REMEMBER. Any day he might think he can still cook. Or drive. Of course that wouldn't happen because he couldn't find the car or the keys but I still wonder when that day will come.

I will close with my stock description of our life right now: Gregory is happy, content, enjoys his life, is and feels safe with me. And I cope (although sometimes this takes more energy than I have.) And it only will get worse. I probably haven't seen anything! And I die.

P.S. You are one bright spot in his, my, our life!

Love ya,

Michael