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

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

Showing posts with label Friendship. Show all posts
Showing posts with label Friendship. Show all posts

Saturday, October 10, 2015

You You, Me Me, Wa Wa Wee

Our friend Pat took this video of Gregory. 



In an e-mail yesterday, she explained: "It's from July. We were fooling around with singing & you can hear him respond to me by going lower & lower. Even though he was not looking at me, he obviously heard me & responded. I think it was the same visit I got him going & he sang "you-you-you" (or yoo-yoo-yoo"  & then, when I said playfully that I liked that song, especially since it was all about 'me,' he launched into the opposite, a song "me-me-me."  Or at least that's how I interpreted it."

For some wonderful reason, Pat and Gregory and Gregory and Pat built such a huge bond in the short time they knew each other. 

At Lieberman, he loved his time with Manny his private care helper and friend, was a pleasantly surprised to see long time friend and housekeeper Halina at his side, was always happy to see me, and always pleased to receive visitors. 

But the reception he gave Pat always seemed to be the largest of all with verbal "Wonderful" or "Oh My Oh My" or "WaWaWee!" She was probably the most loyal friend in her bringing Gregory treats and surprises and visits.

I am grateful for Pat who defines what a true friend can be.

Friday, January 16, 2015

Telling Jokes

"Did you hear the one about ..."

Yesterday spending lunch time with Greg. He was in a great mood. Telling jokes (least the rhythm of his phrasing sounded like jokes), cracking me and himself up.... He let me feed him soup, burger, potatoes and apple crisp. I'd say his appetite has definitely returned!





Holding Hands

From our friend Susan O'Halloran:

I love when Greg grabs for my hand. Does he know who I am? Sometimes, it seems that way but, most of the time, it doesn't matter. I just love being with him. Always reminds me that our presence is enough. We don't have to be anything else than just here… just us.




Saturday, August 2, 2014

Friendship

From my friend Pat:
“A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”
Thanks Pat!

Wednesday, July 2, 2014

Coffee With A New Friend

Today I had a coffee with a friend who is facing Alzheimer's withF her father. In the beginning, most of us go through this alone until it is time to reach out or until it gets so bad that it feels beyond our comprehension and/or control.

So I was happy to be able to be a good listener and to offer some advice, free for the taking. I think just having someone to talk to is helpful if only to hear yourself admit what you already are thinking, what you already know, what you fear.

A big part of my advice was that in many ways fear has no place in dealing with Alzheimer's. It isn't productive, it doesn't solve any of the problems that will arise, and very often many of the things you could have allowed yourself to fear DO NOT HAPPEN. 

How does one overcome fear? I don't know how I did it, but in some ways having confidence in myself, enlisting the moral support of family and friends, looking at my successes, being grateful for the good stuff still left, trying not to feel perfect and by not feeling too guilty when I wasn't ... and by deep, deep breathing.

I found meditation helpful in letting me "escape from myself and my voices" so I could hear the comforting words of the universe sooth me. I knew a lot about meditation (or thought I did) and just berated myself for not just "locking myself in my darkened closet and doing it!" 

One day my massage therapist introduced me to a woman who she felt would do me some good. I signed up with this woman for meditation classes, previously not having realized that one needs to be taught how to meditate, that in fact part of the practice of meditation requires one to HAVE A TEACHER to support and guide you. What I learned with Corinne, in many ways, has saved my life -  or at least given me a more peaceful one!

Even though each of us on the giving side of Alzheimer's and those on the receiving side of Alzheimer's (read any type of dementia,) go through this insidious disease in a way that is as unique as the individual personalities involved, there are many things which we have in common: dealing with fear, the unknown, disbelief, unwanted and unexpected change, difficult often unilateral decisions, somehow getting through this to the other side - whether it be in this life or the next.

In an e-mail that my friend sent thanking me for my time today, I replied:

You are very welcome! As I said, it will get worse but it will get better. You will run into obstacles you cannot foresee but the solutions will find you. You know in your deepest heart what you want for you dad and you will be able to do it as the time comes.

With your dad's "aggressiveness" you may run into complications but I understand him to not be physically violent. There are drugs to help with this. Most places will want to do an evaluation of your dad before making any commitments. 

Something else I did not mention is that there is no such thing as telling a lie when it comes to Alzheimer's. Any reply, true or false, is meant to pacify the person with dementia ... truth does not matter. Believe me I have learned to "lie" to Gregory. But then again, what is a lie? An embelishment? An exageration? A half truth? An omission? Someone else's point of view? NO ONE IS JUDGING.

A "visiting friend from college" can really be the psychologist who is observing and prescribing. The "car breaking down and not being able to afford a new one" can easily help solve the problem of a person dealing with no longer being able to drive.

When Gregory gets upset or depressed or angry and is unable to explain why, I go into my "Everything is OK. I have taken care of everything. You have nothing to worry about. You just have to be happy. I have lined everything up that needs to happen. It is all taken care of. No need to worry. I love you. You love me." MANTRA. And guess what, Gregory is able to calm down. I had no idea what was bothering him and he doesn't know that but he trusts that I have taken care of everything, and even not knowing what it was, I probably have! That's what comes with loving someone for over 39 years!

Sunday, May 4, 2014

Dinner and Conversation

Manny and Greg and Michael had dinner at Lieberman cooked by Alaksh: Butter Chicken and Paneer Korma over rice. Yummmmy.

Manny, Gregory, and Alaksh

Butter Chicken

Paneer Korma

We had dinner on the second floor in a small classroom. It was fun sitting around the table eating together. Gregory enjoyed it very much. His room is too small for such a party and the dining room only allows Kosher food. The only thing were were lacking was a table cloth and a few flowers in a vase. 

Alaksh is planning on cooking again next week. I'll provide the table cloth and flowers and a picture of Gregory's and my moms. Happy Mother's Day it will be.

After dinner we sat in the main space of the fifth floor, the music center, and visited with the four of us, Gerrie and her son and son-in-law and a friend of their's visiting from Florida. Later two male residents (there are not many males) joined the conversation. They didn't add much but had been sitting on the periphery listening so we invited them to join us. 

Dorothy walked by and "blew" us her greetings as she plowed down the hallway, walker to the wind.

Sad part was greeting Marvin (husband) who told us his wife (resident) Betty wasn't doing too well. She was having trouble breathing and couldn't eat any more so they've started Hospice.

Funny (and sad) how the Lieberman Fifth Floor community continues to grow on us.

Thursday, January 16, 2014

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




Monday, January 13, 2014

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?

Monday, August 26, 2013

A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

Saturday, April 6, 2013

Companion

Gregory's companion Ken has moved in with us for three months. A while ago, he had mentioned that his lease was up in March, that he couldn't renew it because his building was doing some renovation, and that he was here for school until June. I asked him what he was going to do and he said he didn't know, he would have to find another apartment.

This caused my "opportunity light" to go on. I thought about the possibility of his moving in with us, discussed my idea with Gregory, and a few days later we presented our proposition to Ken. In exchange for a very little rent from him and more time available to be with Gregory, he could have our guest room and the guest bath as his own. We could also share meals when he was home and when I cooked.

The offer was made at two levels. One was altruistic because Ken was in need of something we could provide and we have come to like him a lot over the year that he has been Gregory's companion. Secondly it would provide me with what I have been calling, "The Nobel Experiment." How do I continue to provide for Gregory's needs as the demand increases and yet still maintain my sanity?

The idea of having someone live with us 24/7, the fact that the condo while comfortable is not huge, and with Gregory and I having to give up our guest/TV room, we had some hesitancies and concerns.  Even with Ken's being excited about the idea and his accepting our offer, I am sure he had concerns as well.

The idea was to see what having "live in help" would be like. Most likely this is the future if I want Gregory to be able to stay at home for as long as possible. As his medical and personal needs increase the person will have to be more health care oriented but that is not necessary at this point. Also, I am healthy and able to take care of Gregory's needs and while I expect to stay healthy, it is always good to plan for all possibilities.

The transition has been very smooth and most of our worries unfounded, Ken is comfortably ensconced in the guest room and besides his being supportive as a companion to Gregory and providing me a friend I can actually communicate with, he has been an excellent, respectful long term "guest.

It has been nice having someone around to let me get out to play, to run errands, have a life of my own so I can be in a better place and more emotionally available to Gregory. Most of the time Gregory and I are together but Ken's being around has given me more opportunities for myself. He has also given Gregory company when I am at my computer running the household or writing or taking a nap.

Ken has provided me with a companion in many ways as I have someone to talk to and share complex ideas which Gregory is no longer able to do. Ken can give me feedback and helps make me feel less alone.

Another thing Ken has provided is putting me in a place of "wiser adult" and almost a parent figure as he asks for my advice, as I sometimes offer it on my own, and he seems to value what I have to offer. I know Gregory needs me, but the interaction and communication with Ken meets those needs on a different level.

Also, Ken has on his own taken over house hold responsibilities like emptying the dish washer, taking out the garbage, picking up groceries, helping me with condo maintenance. He has begun to give Gregory his breakfast and goes swimming with him.

So the only problem with this "Nobel Experiment" is that both Gregory and I are enjoying it very much but it will end in June. Will enjoy it now ... and worry about loosing Ken when that comes.


Wednesday, January 30, 2013

Reply From My Friend


Dearest Michael,

I use that term of endearment as a former caregiver to a current caregiver. I just read your blog "Between a rock and a hard place"

The rawness of your emotions makes me feel for you so much. I must tell you I "coped" with L's behaviors with the help of antidepressants and Xanax f or anxiety, Also, after I had a stroke in 2010 you may remember he went to a nursing home. There I could still see him and most importantly touch him. Many days I stayed 6-7 hrs but I had a break when I went home.

Before the nursing home, I had a companion here 6 days a week. (We were fortunate to have Long Term Car Insurance which covered that) I guess what I'm trying to say is: Are you getting enough downtime.? Are you getting any therapy- talk or Rx's?

What happened to me when L died was that I felt so relieved for him that he was no longer so frustrated, but also for me even tho I really missed touching him. It took me months to feel comfortable with groups of other people esp. When there was much jocularity. I was beginning to come out of the fog when I found some old love/sexy letters which just got me way down again.

Now I'm volunteering in two places and in two book clubs and I'm doing pretty well. I would love to talk with you whenever you want. Let me know what times are good for you and I'll see when we can connect.

Much love and big hugs,
B
PS My son calls almost every day which helps a lot!

Tuesday, August 16, 2011

Without Warning


A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.

Sunday, February 27, 2011

But Not Necessarily For Kittens

Let me recount a beautiful but sad experience I had at 6:00 this morning. Since Gregory's illness has progressed, I have become a light sleeper. So this morning I was instantly aware that Gregory was awake. I couldn't tell if the noises he was making were laughter or crying.

"Are you OK?" I asked.

"No." he replied through his tears. "I miss her so. Do you know who I mean?"

I quickly thought of his mother, Helen, whose death anniversary is tomorrow. Maybe that is who he meant but our conversation took a different direction. Perhaps he was awake or just back from a dream. Either way I did not analyze.

"No, not my mother. My painting teacher. Nancy. I wish she would come back. I miss her so!" and he continued to whimper and sob. "Where is she?"

By now I was wide awake, on my elbow, holding his shoulders and we rocked. "She is in California at an art show. She'll be back. It will be OK. It will be Ok." And we rocked.

Tears began to run from my eyes, unasked and unannounced. It makes me so sad when he is sad. But I could only be there for him and lie by his sadness. Soon he calmed down, "I am OK now. Isn't that silly. I'm sorry."

"Don't apologize. No it isn't silly. I know you really miss Nancy. She'll be back soon."

I know how much he has been enjoying his new artistic endeavor painting with oils. I know how important his relationship with Nancy is. As she says, their time together needs no language and we seem to have a quiet ability to communicate, not necessarily with lots of words.

"Maybe I shouldn't say this but I have an idea for a piece. With all grays," he inserted into my thinking. Then, "Do you think I could take two or three pieces to the party?" he asked like a small boy would ask. He was referring to the Oscar Party we are going to tonight at Danny and David's. We have been doing this for some twenty years now.

"Perhaps that wouldn't be a good idea. We don't want to take the focus away from Danny and David. We could make a few smaller photographs of your paintings to carry in your wallet if you would like."

"That would be nice. This is so silly. I am sorry."

"Honey don't apologize. It's OK. Sometimes waking up from a dream can be difficult and strange."

"But not necessarily for kittens," he said as he petted our cat Mariah who was at his side, "Not necessarily for kittens."

Sunday, February 20, 2011

"In The Table" & "On The Wall"

Last night Gregory and I were featured artists at Jan and Jake's "In The Table Gallery." Jan wrote a wonderful BLOG about the event and instead of trying to do the job as well as she did, I have posted her entry:
In the Table/ On the Wall
In a previous post, I described our new Amish built display table for our living room, which has allowed us to exhibit lots of items from our vast tchotchke collection. Playfully, but seriously, I suggested to my friend Michael that he have a show “in the table.” He has been collecting miniatures his entire life and now his collection, on permanent loan to the Chicago Children’s Museum (also in aprevious post), will open this May 13. But he is a consummate (and obsessive) collector and so has continued collecting since this donation. He would use the table.
His partner, Gregory, who was diagnosed with early onset of Altzheimers 10 years ago, has begun to paint, so Michael suggested that Gregory show his paintings as well. He would be “on the wall.”
Michael and Greg created Artist Statements about their work. An excerpt from Michael’s:
I have been a collector all my life…Unlike my other artistic endeavors which are usually orderly and symmetrical, if not balanced, “In the Table: A Display of Collected Items” invites the viewer to visually inspect, discover, and make sense of a disorderly array of unrelated items. The only thing they have in common is that they are all small. The contents of the table may be rearranged periodically during the reception.
My installation was inspired by a visit to The Menil Collection in Houston where I saw a show called Witness. In a small, dark, but carefully lit room, were cases displaying actual and reproduced items with which the Surrealists surrounded themselves in their studios.
…What inspired me in particular was a glass top coffee table, placed on a platform in one corner of the Witness exhibit, which had belonged to Mrs. Menil. It contained in no particular order, a huge array of items, each more interesting than the next. Her purpose was to inspire her visitors, adults and children, to play, discover, question, and learn from the items in the table…The collector in me was moved and wanted to both play with and to own Mrs. Menil’s table collection.
An excerpt from Gregory’s statement:
When I met Nancy Rosen…there was an instant connection…[A]n amazingly prolific and talented oil painter, [she] has taken me under her wing as I begin to develop my latest art form, working with oils.
The paintings are on Stonehenge paper that has been roughly gessoed. I begin each piece by studying the rough surface of the paper in silent contemplation until it “speaks” to me. Then I paint and do not stop, or look at the work from afar, until I am finished with the piece. I automatically know when to begin and when to end a piece…The ideas just seem to come from within, I know not where exactly.

hanging the show
As I cleaned the house for the opening, I cleaned with real intention. I have never done that before, that is, clean with intention. Thoughts and memories of my 32 year old friendship with Michael and Greg filled me as I mopped, dusted, and even painted two walls. My intention in the cleaning of the house was a mantra to build constructive energy in the space of our home and to demonstrate my sincere love for the both of them. The house was flooded with light.
Last night at the opening, the energy was high and palpable. A wonderful mix of people (35-40 guests): friends of Michael and Greg’s, some of our friends, some of our son’s friends (and his new girlfriend, I might add), mutual friends. Good synergy. Diverse conversations and lots of places to explore and have them. We converted our son’s old room into a guest room/ gallery of JB’s and my work. Our studios were open and in the library upstairs, people played the theremin.
Boosted by the champagne cordials and other adult beverages, Michael and Greg held court with engaged admirers and supporters. The evening felt busy and electrically-charged. It was a wonderful feeling to be able to play host and create opportunities for others to have attention around their creative endeavors. It was wonderful to have a house that, inspired by this task, so easily adapted and grew creatively in its capacity to hold the tangible visions of others.

Gregory's GREEN SCRIBBLES, 25"X25", Oil on Gessoed Stonehenge Paper

Gregory's SHADES OF GRAY, 25"X25", Oil on Gessoed Stonehenge Paper
JB’s closeup photo of “in the table:”
Visit Michael’s Museum to find out more information about the upcoming opening at the Chicago Children’s Museum.


Monday, February 14, 2011

Valentine's Day Part Two

Had a wonderful dinner at "The Pine Yard," a Chinese restaurant in our neighborhood that has delicious food. Now a movie and then our "Chocolate Volcanos" with vanilla ice cream.

Gregory was delighted with the red satin heart filled with Godiva Chocolates. If I behave he might let me have one or two.

The card he bought for me is touching. He was very pleased with himself and his selection. The card portrays two adorable rabbits, or are they mice, (G seems to think they are Bunnies) as seen from behind as they sit on a swing bench attached to the branch of a tree. They are arm in arm and leaning their heads together watching a sunset. The swing is next to their home, the same tree with its branch holding the swing. The colors are warm and soft and you can tell that love is in the air. The greeting inside says, "Your marriage is a true inspiration. Happy Anniversary. It is signed Greopry.

With the tear in my eye, can I tell you the card is beautiful, the sentiment is beautiful, my Gregory is beautiful.

Sunday, January 9, 2011

Gregory Paints

Gregory continues to get great pleasure from his new art form. It has been so important to him and I do everything I can to encourage his pride in the work he is doing. Nancy Rosen, his Artist Angel, continues to advise as they work together in her studio.


FIRE (SOLD)
8"X12"
Oil on Gessoed Stone Henge Paper


YELLOW & BLUE SPIRAL
25"X25"
Oil on Gessoed Stone Henge Paper


GREEN
8"X12"
Oil on Gessoed Stone Henge Paper


SUNSET
8"X12"
Oil on Gessoed Stone Henge Paper

STRIPES
8"X12"
Oil on Canvas

BLUR
8"X12"
Oil on Gessoed Canvas

ORANGE SUN
25"X25"
Oil on Gessoed Stone Henge Paper

DIAGONAL
8"X12"
Oil on Gessoed Stone Henge Paper

DIPTIC
18"X12"
Oil on Gessoed Stone Henge Paper
Oil on Gessoed Stone Henge Paper

SHADES OF GRAY
25"X25"
Oil on Gessoed Stone Henge Paper

RED SCRIBBLES
25"X25"
Oil on Gessoed Stone Henge Paper

BUDDHA
8"X12"
Oil on Gessoed Stone Henge Paper

GREEN SCRIBBLES
25"X25"
Oil on Gessoed Stone Henge Paper

BLUE WASH
11"X15"
Oil on Gessoed Stone Henge Paper

BROWN & GOLD
25"X25"
Oil on Gessoed Stone Henge Paper