FOR GREGORY

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

PLEASE NOTE:


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


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


• • • • •


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


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


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


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


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


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



Monday, March 31, 2014

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
 


Today at Lieberman

Today, I got to Lieberman by 1:00. Gregory was happy to see me and seemed able to focus pretty quickly on my presence. He asked a question I haven't heard in several weeks, "Where have you been?" My stock reply, "Shopping." He laughed. I laughed.

I sent Manny on a "break" so Gregory and I could be alone. Very often we just make "nice/nice" or sing or sit and watch South Pacific, the musical. Often I get there by mealtime and I sit with Manny or Alaksh and help Gregory with his lunch or dinner. Sometimes, if I am the only one there on that day, I will take turns feeding him and helping him feed himself.

I pulled his wheel chair as close to me, head on, as I could. "Can we talk?" I asked. "I love you so much and really miss you. You mean so much to me and I want you to know that I am here for you, to help you and to take care of you. I know that we both didn't expect it to be like this but this is our life now. I wish I could make it all better but we both know I cannot.

I hope you are happy here and know that everyone likes you and is taking good care of you. I am happy. I want you to know that. I hope you are happy too. The money is OK so we don't have to worry about that. Now that you are OKed for Medicaid, all of this help is free, we don't have to pay a penny. (Actually his Social Security money goes to support, in part, the Lieberman fees.)

I know you have forgiven me for the times when I was mean or angry. I know it wasn't your fault but I am just human. You have been a trooper through all of this and have been so accepting and loving.

I am not sure if you understand everything I am saying but I wanted to say it. You don't have to say anything to me because I can see all your love for me in your eyes. In your and my tears. It is OK for us to cry together. Then we can be happy again. Or maybe the tears are of happiness. Tears of love.

You are my love. You are my boyfriend. Your are my best friend. I love you so."

At this point I offered Gregory a tissue. I had been wiping both of our tears but now he put it to his nose and blew. Still knows how to do that. We held hands the entire time.

At one point I got on my knees in front of the wheel chair and laid my head in his lap. He put his hand on my head and patted me. It was not easy for him to control his muscles but he did it and we both felt good. I kissed him all over his face and sang, "Soft Kitty, Warm Kitty, Little Ball of Fur. Happy Kitty. Sleep Kitty. Purr. Purr. Purr."

This is the song that Dr. Sheldon Cooper's (from the TV series Big Bang Theory) mother used to sing to him when he was sick. It has become Gregory and my theme song. Often I will tip his chair back, put a pillow under his head, and sing him into a nap. Which I did after our talk. I also put a blanket over him because blankets are warming and comforting when taking a nap, even when you have Alzheimer's and even when you are in a wheel chair.

It was a good afternoon.

And Counting

Bragging (sharing) again! This Alzheimer's BLOG just reached 28,000 hits since June 2010.

Quotations

With Alzheimer's Disease, even the seemingly most significant quotes ... DON'T WORK!

Saturday, March 29, 2014

Yesterday at The Lieberman

After a few positive interactions between Betty and myself (she is NOT always in a good mood) she wanted to introduce me to her daughter who had joined her for dinner (I have met the daughter several times before.)

"This is what I could call a ... (pause looking for the right word - then promoted by me "... a gentleman and a scholar.") "Yes, gentleman and scholar. He is the kind of man you want to have around when things are not quite in the correct order!"

At dinner, the Social Worker asked me if I could help Frieda with the Sabbath Blessing Over the Wine. Frieda is a tiny, wizened, nearly blind woman who sounds like Donald Duck on Helium when she talks. So I crouched down next to her wheel chair and believing I was her father, Frieda and I together chanted the blessing. As an added benefit, we also did the Blessing over the Bread.

The day before, Pat and I visited Gregory on my Birthday. When he saw her, he was very pleased, smiled, and said in a complete sentence, "You are so beautiful!"


Friday, March 28, 2014

Post Birthday

An E-Mail to Susan:

Thanks. Your words and insights are always comforting. Your birthday wishes meaningful.

My birthday was spent with Pat, a new friend of three years, who is also a writer and with whom I felt an instant bond when we first met at a writers conference. She is good with Gregory and good for me. We have a lot in common, a lot of similar views, and most of all are easily respectful of each other's individuality and differences.

On my birthday, she and I went to Lieberman to help G with lunch, had some birthday cake in his room, went on to an antique mall in Gurnee (where I saw the most amazing hand carved German Noah's Ark for only $5,000,) went home for a nap, got back together to open gifts (Pat does good gifting,) went to Pete Millers for a huge steak and some jazz, and ended up back at the condo with another small birthday cake. 

It was difficult without Gregory by my side, but I did OK. You remember that my mom died on my birthday (still consider it a blessing from her to me) and now with Gregory more or less out of my responsibility, my birthdays (and currently my life is) are "spent" and/or "contemplated" rather than "celebrated." But that is OK. 

Many, many friends and family went out of their way to send me wishes (cards, calls, e-mails, texts, Facebook, wow what a large number of ways we now have to communicate, if only with a LIKE click) and that felt nice although I kept low for the most part. Today I will finish responding to my well wishers.

Still feel like I am treading water but the future is a large possibility islanded out there ahead of me. Talk soon,

Michael


























Thursday, March 27, 2014

March 27th, 1945

March 27, 1945


Happy Birthday Michael

Michael at just a few months with Dad-Lou, 
Mom-Adeline and Sister-Libbe
March 27, 1945

Michael - 69 Years Old
March 27, 2014

Mom began her next journey on the day I was born.
RIP and A Blessing on March 27, 2010

Wednesday, March 26, 2014

Birthday Celebration

Last night friends Jan and Jake, their son (and Gregory and my God son Isaac,) and his girlfriend Az, and I went out to dinner to celebrate Jake's 72nd, my 69th, and Jan's 64th. Az celebrated her birthday a week or so ago, J and J will celebrate their anniversary in a week or so, and Isaac's birthday is less than a month.

So the evening was full of celebration, laughter, wine, good food, and gifts. For me there was also, sitting by my side, the absence of Gregory which made me sad but didn't spoil the evening. Just saying'

Here are a few pictures from Jake:

My Shrimp and Lobster Scampi
at Davis Street Fish Market

A portrait titled:
"Michael and his Spaghetti"

A Dragon netsuke was my gift


The dragon was presented in a yellow silk tie string bag with a handmade scroll. On one side was a beautiful photograph of the moon that was taken by Jake. On the other side was this, researched and written by Jan:

The Japanese dragon is associated with rainfall and bodies of water. It is considered a water deity and is figured in the names and decor of many Shinto and Buddhist shrines. The Dragon is connected to the season of spring when new life begins. Spring is also a tumultuous season full of storms and earthquakes (in Japan) and such extreme weather is attributed to Dragons fighting with other mythical beasts. In Japanese a tornado is called a Tatsu (Dragon) Maki (Roll.) Dragons are frequently emblems of emperors and heroes and offer guardianship and protection.

Japanese Dragons have the power to assume human form allowing them to interact and breed with mortal beings. Though wise and benevolent, Dragons often remain indifferent to human affairs, concerned more with the grand issues of the universe. Never-the-less, through rain prayers, Dragon dances and other rituals, humnas, especially farmers and fishermen, can procure good fortune from the Dragons. 

So, Michael, a Dragon for you as a protector and a guardian, finding yourself in a new kind of spring, fraught with storms, but holding new life as well. This Dragon netsuke connects with the promise of this new life.

Happy Birthday.
Carry our love with you!
Jan and Jake

Monday, March 24, 2014

Today At Lieberman

I greet Morse. "Hello." He only speaks Russian. "Shabbat Shalom," (Good Sabbath) he replies. P.S. Today is Monday not the Sabbath.

"How are you today?" I ask the Doctor (a resident.) "I'm here!" he replies. "Zaigasunt," I tell him (be healthy.) "That is a good idea!" he says smiling.

Betty's son is visiting. He tells me he is here for his daughter's (Betty's grand daughter) Bat Mitzvah. "Oh how nice," I reply directed towards Betty. "What is your grand daughter's name?" Betty thinks for a while, "I don't remember." She says looking at her son. "Lara," he replies. "Oh yes, a very forgettable name," comments Betty.

In the hall, Lucy sits on a chair next to the nurse's medicine cart. The nurse is busy preparing medications for other residents but you can tell that Lucy is getting great comfort just sitting next to the nurse watching her work.

In a corner, the social worker is talking with an upset woman resident, holding her hand, assuring her that her son will come to visit soon. "I hope so, I hope so," the resident says. Whether true or not, the exchange helps to calm the woman.

Manny is helping Gregory eat. Manny places some carrots on Gregory's fork and tells him, "Here, put the carrots in your mouth." Gregory concentrates deeply, slowly lifting his weighted, bicycle handle looking fork towards his mouth, keeps going past his mouth, and tries to feed the carrots to his forehead. Then he looks cross eyed, laughs, and put the carrots into his mouth.


Saturday, March 22, 2014

Beet Soup



The Lieberman Center is run under the CJE, Council for Jewish Elderly. One of the important features of the center, besides their excellent care, is that they serve only Kosher meals to the residents.

Aides are not allowed to toast residents bread on the Sabbath according to a sign in the kitchenette. Following the "no work on the Sabbath" law.

Saturday lunch and dinner (still the sabbath until sundown) is prepared ahead of time to follow the "no work on the Sabbath" law, so tonights dinner was borscht, cold salmon salad, sliced tomatoes, and a lovely challah roll.

As I was lifting the cup of cold beet borscht to Gregory's lips, I announced in a loud voice, "Borscht!" Isaac, our God son who was visiting fell into the routine also announcing, "Borscht."

Gregory just gave us both a look, then announced very clearly, "Borscht" and began to laugh. Both Isaac and I laughed with Gregory and many of the other diners looked in our direction wondering what we were so happy about.

It was the Borscht! Also, for the most part Gregory is non-verbal so his loud, clear announcement, done in a humorous vain, cheered us all!

borscht |bôrSHt (alsoborsch) nouna Russian or Polish soup made with beets and usually served with sour cream.ORIGIN Russian borshch .

A Visit With Gertrude

While I was observing Gregory in Physical Therapy, I had a chat with Gertrude who was waiting to use the bicycle petals after Gregory. Turns out she is 100 years old, which was confirmed when I looked at the PT associate bemusedly for confirmation.

Margaret was at least as alert as you and I, well groomed, friendly and chatty. He husband had died some twelve years previously with an added, "I miss him but what can you do when you continue to wake up every morning."

She commented on what a handsome gentleman Gregory is and while empathetic did not feel the need to go on about how young to have Alzheimer's. "So sorry for both of you. It is what it is, I guess," she said warmly.

I told her we have been "partners" for over 39 years (still searching for the best descriptor since I am uncomfortable with "husband" because it implies sex types and roles. We are not husband and wife.)

She lit up and shared that she had her husband for some 75 years. We commiserated how difficult it is loosing the one you love (her's quickly, mine over the last ten years.)

Maybe it is because I came out Gay during the 1950's, and have lived a large part of my life through a time when being Gay was wrong, a sin, looked down on, punished, shunned, minimally - not recognized, etc; that I am still amazed when being Gay and having a life mate is taken as a mute issue.

The love of 39 years is what is recognized. My sacrifices is what is recognized. Our love for each other is what is recognized. My role in making all medical and health and life decisions for Gregory, as his husband - mate - lover - life partner - wife - soul mate - etc, is what is recognized and respected by family, friends, and everyone we have come in contact with at The Lieberman Center.

It was so refreshing and wonderful and life reaffirming to chat with Gertrude.

Thursday, March 20, 2014

Update

But can you tell me - I'm sorry to ask this - why does he look like he has had a stroke?

A friend asked this question and it certainly is a valid one. I am not really sure of the answer but I can dance around it.


When Gregory ended up in the hospital, close to the beginning of his time at Lieberman, the experience took a large toll on his mobility and general functioning. He fell and gashed open his head. With a knee jerk from that pain, after falling, he to hit his forehead on the bottom of the bed leaving a huge bruise.While the X-Rays showed no broken bones, I think that Gregory did some damage to his back and neck which have always been sensitive areas for him since we met some 39 years ago.

Next he had a major Grand Mal Siezure that put him into the hospital for four days. Research says, I did not know this, that approximately 28% of people with Alzheimer's begin to get seizures at the end stages of the disease.

Gregory began Dilantin to avoid future seizures and the medication took two or more weeks to balance itself, the strength of it causing him to be weak, drowsy, and basically "out of it."

On the last day of the second hospital stay he came down with the flu. It was a mild case because he had had the vaccine in October but non-the-less the effect of the medication for his H1N1 flu was like being hit by a truck.

Over the next weeks at Lieberman Gregory got stronger and stronger and felt better and better but one must be reminded that he is in the last stages of Alzheimer's. The progress of the disease over the last year, and then between Christmas and his moving to Lieberman have been exponential.

At this point, due to the above and the progression of the disease, he is not unable to walk so lives in his wheel chair. He doesn't seem to mind. He is progressing a little with Physical Therapy and over the last four days has been peddling a bicycle from his wheel chair for fifteen minutes at a time and has been walking with the help of two therapists.

Progress may be progress, but with Gregory at this stage, progress needs to be redefined. It is not the kind of progress that you or I might experience after a fall or an illness.

Part of the problem now that he is regaining strength, is that his cognition continues to decline so while he may be strong enough to walk, he no longer knows how to do so cognitively. I.E. the brain sends out the "walking signals" but he legs do not know how to "read them."

The same has happened with his fingers, hands, and arms. The strength is there at times but the signals get scrambled. Due to this disconnect between the cognition and the muscles, he has developed what are called "Intentional Tremors."

When the brain sends a signal to his hand to pick up the fork, the signal is just interpreted in a jerk of the muscles in his arm and hand. The ability to stab or cut or scoop a piece of meat with the fork, let alone get it to his mouth no longer works well.

So this is the long and short of it. He does look at times like he is "out of it" in his awareness and responsiveness. Where he is, who knows. But he does come back.

Also his coordination of muscles due to lack of use, and cognitive disconnect causes him to look like he had a stroke and most of the time his neck needs to rest on a pillow because he cannot hold it up.

So there is your relative answer. Hope this helps you see Gregory in a real light which is also a loving light that continues to bless both Gregory and me.

Wednesday, March 19, 2014

Progress

Gregory, looking good and feel in' fine!

 On the stationary bicycle for 15 minutes! Wow.

A "selfie" of Gregory walking down the hall.
Quite an accomplishment!




Life

"Life is about trusting your feelings and taking chances, losing and finding happiness, appreciating the memories, learning from the past, and realizing people change." ~Atul Purohit

Danger

I have addressed this in several ways but here is one more. Again worry about those things you can change, not the ones you cannot.


Friday, March 14, 2014

Balance

During the session on Thursday with my Psychologist, I mused about dichotomies.

How can I feel so joyful and so sad at the same time. So contented and disoriented? So calm and so crazy?

How can I be enjoying being in the condo by myself, making all life decisions by myself, and sleeping so comfortably all night while missing the heck out of Gregory being next to me in the TV room, deciding together where to go for dinner, and sleeping lightly next to him in bed ready to monitor any night time needs?

How can I be feeling so strangely contented and so deeply devastated?

My therapist replied to my question of how I can be feeling such extremes at the SAME TIME saying something like this, "Michael, I would call that wisdom. Most people do not realize that joy and sorrow, for example, are the same emotion just opposite ends. Emotions are not good or bad. One is not bad and the other good. They both walk hand in hand. When one is able to keep the balance of those emotions more closely embraced in the center of their being, they are able to function in life more easily. This is not to undermine or diminish your loss with Gregory's changes but to recognize your strength and ability to carry on, which in the long term also benefits Gregory!"

Photos

Several of the last photographs of
Gregory were not flattering.
My reasoning is to share
the good, the bad,
and the ugly!

These are a little better!
Boy, I love this man.
• • •
Here he is smiling 

and watching TV. 

Good Source

A good source of information on Alzheimer's can be found at: http://www.videocaregiving.org

Tuesday, March 11, 2014

Mixed Emotions

Today I was overjoyed.

Today I was over saddened.

OVERJOY: Found out today that in just three short weeks (usually takes 6 months) I was able to get Medicaid approved for Gregory. This means that he will be taken care of for the rest of his life without any fears or doubts over financial matters.

SAD: The difficult part of the day was spent at the Care Conference discussing Gregory's care at Lieberman. To put it succinctly:

1) Physical Therapy & Occupational Therapy will end on March 20. The wonderful practitioners at Lieberman have done as much as they can for Gregory. He is strong and able but his cognition no longer is connected to his abilities and therefore he has not been able to progress with their help.

2) He will probably be in his wheel chair and never walk again. Again, he has the strength but his mental associations and his physical abilities no longer work with each other  and he cannot control the muscles as needed to let him be mobil. Because he is at times stubborn, and strong, and tall ... he is at risk for hurting himself and those trying to help him ... if he looses his balance, or decides to grab on to something while being assisted with walking and cannot be pried loose, or if he just decides to sit down or fight his helper.

3) He continues to have difficulties feeding himself. He cannot control the gross and fine motor skills necessary to use a fork or even to pick up food with his fingers and get it into his mouth.

4) He has what are called "Intentional Tremors." His brain sends a signal to his hand to pick up something and the signal gets lost or jumbled somewhere before the end point. So instead of picking up his glass of juice his hand just tremors or twitches or jumps. He can eat when his hand is guided.

5) He gets stubborn and I call him "My Petulant Seven Year Old." When he grabs onto something he is so strong and you cannot pry the item loose from his hand. He closes his eyes or mouth and won't cooperate. He gets very strongly intent on telling you something almost to the point of being angry: "No, no, now wait. It's just that. Wait this is important. You need to know this." But he is unable to finish the thoughts and the best bet is to agree, "I understand. I know. You are right." And he calms down believing you do.

6) Because his is not mobil, he will not be able to use the bathroom and will have to depend on using what I call his "Paper Pants" and on being changed. He will be lifted for changing with the Hoyer Lift which is a safe way of moving him from the wheel chair to his bed but it continues to frighten him so he fights it and needs to have at least four people helping. I am promised that every two hours he will be "Checked and Changed" and that there will be a computer touch screen program (instead of clipboards) that the assistants will use to chart the "C&C."

7. Because he must depend on messing his pants and being changed, blue jeans are no longer an option because they are just to hard for the RCA's to use (Resident Care Assistant.) So I purchased some nice looking black sweats. At least he can continue to wear his flannel shirts so the "look" will be almost the same.

8) Because of the lack of mobility, I probably will not be able to take him out to dinner, or to the Botanic Garden or Zoo, etc. We can go for a walk in his chair around the building (there is a library and an outside safe garden.) Sad that his world will be so limited but he doesn't seem to notice or care (at least on the surface.)

9) He seems to be more non-communicative, more distant at times. But he is calm and contented.

10) He is happy when people come to visit and usually expresses himself by saying something like, "Oh how wonderful." Then he cries. The tears seem to me to be a combination of joy mingled with grief. When asked if he is OK, through the tears he will tell you, "Wonderful." He then calms down and enjoys spending time with his visitor. Does he know you? Yes. Can he tell your name? Probably not. Can he tell you how he knows you? Probably not. But you can see the love and joy come over him as he hugs you and the tears tell you he is happy you are visiting and that you are loved!

Monday, March 10, 2014

GiGi


"J" sits at Gregory's table. She is in her 80's, newly arrived at Lieberman from a "home" in Florida. Met her son "H" and his lover "R." That evening, the dining room at Lieberman felt like a Gay Disco. You have heard me call it, at times, a Fellini movie without the background music. Thus the Gay Disco comparison. Lights flashing, people screaming out, bodies writhing ... and so many Gays in one place!

"J" has a "baby" who she calls GiGi, who she tries to feed, to whom she coos, and comments on how cute, how cute. Gregory has a Teddy Bear he likes to hold. In his case I think it is more having something to do with his hands than thinking he has reverted to motherhood once more. But in this situation, whatever keeps you happy!

Friday, March 7, 2014

To be blunt...

A few days ago, while at Lieberman visiting with Gregory, this succinct post ran across my mind like a LED electronic readout sign:

Tonight,

this

place

is

like

a

FUCKING

circus

!

Wisdom

Yesterday I played some Chopin for Gregory. He began to get upset, then choked up, then cried. I decided that the tears were probably good for him. I asked, "Are you happy or sad?"

He replied, "I am everything. I am all of it."

Can't get more enlightened than that!

Wednesday, March 5, 2014

Gregory's Room












Communication


LIVING WITHOUT AN AGENDA

Could our minds and our hearts be big enough just to hang out in that space where we’re not entirely certain about who’s right and who’s wrong? Could we have no agenda when we walk into a room with another person, not know what to say, not make that person wrong or right? Could we see, hear, feel other people as they really are? It is powerful to practice this way, because we’ll find ourselves continually rushing around to try to feel secure again—to make ourselves or them either right or wrong. But true communication can happen only in that open space.

—The Pocket Pema Chödrönhttp://www.shambhala.com/the-pocket-pema-chodron.html

Sunday, March 2, 2014

Today

Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.

And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.

In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.

On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.

After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.

No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.

When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.

My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.

I grief and am also grateful for Barbara's and Marie's deaths.




Update

Just realized that I haven't given you an update on Gregory in a while. So first that and then to the post which brought me here so late at night.

Gregory continues to do well after a hectic first month arriving at Lieberman. His strength continues to return, he is more and more alert, he is happy and periodically cries for joy.

Communicative - no. Able to walk on his own - no. Able to feed himself - somewhat as prompted and when able to eat finger food.

Since he is still in a wheel chair, and by the time he notices he has to go to the bathroom, it is too late so we have "accidents." But the staff cleans him up quickly. He gets upset at having to "pee or shit himself" but by the time it is done, it isn't a remembered issue.

He has had many visitors and several repeat visitors. He is always happy to see our friends and family, may not remember your name but certainly KNOWS YOU and feels his love for you.

When reminded (which I try to avoid) of his past he gets a little upset: piano. painting, swimming. etc. He still is very much (fortunately) in the moment, doesn't ask why he is at Lieberman and doesn't ask about going home. He doesn't ask about the past or inquire into the future.

I have hired a helper to be with Gregory from 11:30-5:30, five days a week. Our Northwestern companion spends time with him the other two days a week.

I encourage you to visit Gregory if you are so inclined. I will go on the first visit with you (just to fill you in on the details and to help you acclimate) and then you are welcome to go back whenever you want (or we can go together again if you prefer.)

I would ask you to avoid visiting between 11:30 and 12:30 and 4:30 and 5:30 which are meal times. It gets a little overwhelming to have too many people around at that time. If you arrive and he is an an activity you can join the activity or have the helper take you and Gregory to his room for a visit. The helper will give you and Gregory  your privacy.

There is candy and cookies in his "kitchen corner." There are beverages in the refrigerator. Help yourself. If you want to offer something to Gregory, first get the helper's help.

If Gregory tries to get out of his wheel chair, encourage him not to. If at any time you are uncomfortable with what is going on, ask for help from his private helper or any of the helpers around.

If you do have any questions or concerns, please feel free to give me a call and ask.

Saturday, March 1, 2014

Chopin's Birthday With Memories

Happy Birthday today to Frédéric François Chopin
March 1, 1810 – October 17, 1849.


 

Our friend, Jan Yourist, posted this in honor of Chopin's birthday and in honor of her memories of Gregory pre-Alzheimer's. Beautifully written. Followed on her post by a link to a post I had written about Gregory and his Chopin.

http://connectere.wordpress.com/2014/03/01/gregory-and-the-gift-of-chopin/