An Unexpected Visit

Sundays at Lieberman. 2:00 entertainment concert in the Community Room. Usually attended by 50 or so residents. Cookies and apple cider served and at the monthly birthday celebration Sunday, chocolate cake.

Today Gregory, Manny and I were joined by Batia (fellow resident) and her daughter Naiomi. We were also joined by two unexpected guests: my mom and dad.

Mom and dad sat quietly at our table and did not interact. But they did take it all in. They looked pleased and wished that they could give Gregory and me a hug and kiss. Their smiles spoke years as they gently rocked their heads to the sounds of the Jewish music being played on the piano and violin. Old familiars: Hava Nagila, Bei Mir Bistu Shein, and selections from "Fiddler on the Roof."

As they looked from me to Gregory and back again, I knew they were giving me their blessing. They told me that I was doing a wonderful, loving job and making Gregory's life not only happy but meaningful. They let me know how much they missed us and loved us. Their tears filled my eyes and then they were gone.

https://soundcloud.com/mhorvich/ba-mere-myst-du-schoen
(Opens in a new window. Click the red arrow in the upper left hand corner to play.)

Dad - RIP March 2005
Mom - RIP March 2010

Dinner Conversation

I told M, "Gregory and I like you!" And we do. She calls us her 'family,' and easily calls us  'darling' when talking to us.

"Why?" wondered M.

"Because you are a very nice person," I replied

"Well I should think so. A distant cousin said she didn't like me. Well I told her that was her loss because I am very likable. Once a woman I knew asked me if I was stupid. I told her 'Well not yet certainly, perhaps some day, but not yet.' So thank you for asking. And thank the chair as well while you are at it!"

At this point in the conversation Gregory let out a large, noisy sneeze scaring M.

"Next time," she told him angrily, "take that out to the barn!" Then she got the giggles as did Gregory and I.

B entered the conversation here with, "That was a very interesting conversation. Did you drive here tonight?" Lying, I told her that I had not, that I had walked over ... The Sabbath, you know! "Oh right," she said, "the problem is that my children are at the hotel and I need to get back there. I am not sure into which hotel they checked me."

I explained that she was checked in here already for after dinner. "But I do not know where they are right now." I explained that it didn't matter if she didn't know where they were as long as they knew where she was. This calmed her down and she said, "Well, right you are then."

"Fuck You," came the familiar shout from across the table.

W was in a good mood and ate all of her dinner, but without the usual, non-stop, repetitive  "I don't want it. Do you want it? I don't want it. I want to go to bed. Take me to my room."  Over and over and over again until both B and M would tell her to shut up!

Periodically W would get a mischievous smile on her face and wave at each person at the table. Some of us would acknowledge her wave others didn't notice it. H noticed it and replied by miming from across the table, with both hands, the fondling of her breasts. The next time she waved at him he used his fist to mime rhythmic intercourse.

A little while later, when I offered H a drink, he told me "Fuck You. You are dirty."

I told him "Spy Baba," which means "Be Good Father," in his language. His reply was "Fuck You!"

• • •

I realized that I have easily been able to enter their world and have detailed conversations at the dinner table. Most of Gregory's table mates (with the exception of "FUCK YOU!") have come to trust me, to ask for help with cutting a piece of meat or pouring more juice, or to ask for clarification or support when they are confused or frightened.

I wish I could transcribe even more of the conversations for you and you would see that while they make perfectly good sense, they make no sense! Often they are profound, or funny, or sad, or deep ... even when they make no sense!

Alone

Peaceful the Bear, Manny, and I have Gregory covered!

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 

If I Had Known

On Sep 17, 2014, at 10:39 PM, N E in a response to my FALL UPDATE of  9/10/14 wrote:

Dear Michael,

  This line really spoke to me: "I wear heavy grief on one shoulder but immense joy on the other so I am able to continue to live a somewhat balanced life." What a boon to be able to say that. I think that is what a caregiver lives with and strives for. I was at a play this evening wherein the main character was told what his future life would be, what he would gain and what he would have to live without in exchange. He was asked if he could live with this future and he barely hesitated before saying yes. What would we say if we knew what the future could hold?

Thinking of you,

Nancy

I wrote back:

Thanks Nancy. It was been too long since we have visited. You made me think about what I would say if we knew what the future cold hold. I would immediately say YES to Gregory. If I knew ahead of time perhaps I (we) could have used the time more wisely and at times more kindly, but I would do it all over again because our love for each other has been so special that it dwarfs the pain. That is another reason I can balance the JOY and GRIEF as I continue walking my path alone, having to leave Gregory behind to find his way on a path that becomes more and more difficult for me to see and/or understand.

Michael 

Peaceful the Bear

This bear has taken on such importance to both Gregory and me. Rarely will you see Gregory without the bear in his lap or clutched to his chest. It calms him and cheers him.

Every time I look at the bear I am so grateful that I was able to create this peaceful experience for Gregory. Little things make big differences!

Much like Alzheimer's itself, at Lieberman's Fifth Floor things have a way of "disappearing" for a period of time or sometimes forever. It comes with the territory.

When Gregory is happy he hugs the bear, when he is sad he cries into the bear, when he is angry he throws the bear, when he is silly he uses the bear in a puppet show.

The bear got its name when early in his arrival, Gregory was asleep and hugging the bear. I wondered, "When people with Alzheimer's are asleep, are they at peace with the world and with themselves?"

I have purchased four (4) bears. When one becomes soiled or dirty, I am able to take it home and wash and dry it and return it to Lieberman.

By having this many bears, Gregory will never be without his Peaceful!

Peaceful enjoying ice cream at

Lieberman's September Birthday Event.

Fall 2014 Update

I am posting this update and will also e-mail the link to family and friends who do not follow this BLOG.  A friend once lovingly told me, "Based on how productive you are on your BLOG,  I have to decide 'Follow my own life or follow yours!'"

As you know last January, after a difficult year and a month of rapid decline, Gregory became somewhat hostile and aggressive and I had to call 911 to send help. After only one day of sedation but a three day stay in the hospital with a "sitter"  (because of the violence threat) he was much better.

The experience, however, caused me to evaluate Gregory's decline and was a red flag that told me I could no longer provide for his needs by myself at home. The hospital stay gave me the time and opportunity to find a memory care facility for him.

At the suggestion of a social worker friend, who is the Director of Senior Services at RUSH Hospital,  I looked into The Lieberman Center in Skokie (10 minutes from the condo.) I will always be grateful to her for this advice.

I found the memory care facility to be one of the best in Chicago, and was able to get a bed (and private room) for Gregory. He was released from the hospital to The Lieberman Center never to come home to the condo again.

This was difficult for me but Gregory made the adjustment and has never once asked "Why am I here? or asked to go home. It has been a fairly easy learning curve for me to become Gregory's "Secondary Care Giver" after more than ten years of being his "Primary Care Giver" and life partner for more than forty years.

I wear heavy grief on one shoulder but immense joy on the other so I am able to continue to live a somewhat balanced life. I am able to be there for Gregory as I learn how to live my new life. By taking better care of myself, I am able to better be there for him.

When I visit we hug, and kiss, and laugh, and sing, and read aloud, and eat chocolates, and go outside into the garden, and listen to music, and watch DVD musicals. We attend Lieberman Center functions, concerts, and parties. Sometimes we just sit quietly and hold hands.

I join him for dinner or lunch and with the people at his table we usually "close down" the place being the last to leave. While the conversation is, at times like being in a Fellini movie without the background music, it is also loving and at times humorous and engaging.

Besides visiting Gregory almost every day, I keep myself busy. My second book of poetry has just been released and I have done several poetry readings.  You can purchase books one and two at:
 www.amazon.com or
 www.barnesandnobel.com
(Links open in a new window.)

I am continuing to work at finding a publisher for my manuscript called GYROSCOPE: An Alzheimer's Love Story. By now I could write Volume 2 and 3 of the story of Gregory and my journey with the disease. If you have any publishing connections, please put me in touch.

A second museum is in the planning, in addition to the wonderfully successful and loved Michael's Museum: A Curious Collection of Tiny Treasures at Chicago Children's Museum on Navy Pier. http://michaelsmuseum.org

The new museum will be a traveling installation that in time could end up in many museums, cultural centers, children's museums, or other civic buildings across the country (and as I am one to think big about small things ... perhaps across the world.) I am calling it something like: MCM. Michael's Closet Museum: Unlimited Small Wonders in a Limited Space.

I am also putting together a new venture: Michael's Magical Flea Circus. The performers and circus tent are ready but the program, music, costumes, choreography, etc, remain to be developed. You will hear more about this later. http://www.michaelscircus.org

Now that Gregory is living at The Lieberman Center, a memory care facility in Skokie, I have made the condo more my own; repainted, reorganized, got rid of clothing, and am learning to live alone. I like my privacy, enjoy my solitude, am relieved that Gregory is being well taken care of without me having to carry the entire load, but I miss him like heck!

Gregory is no longer the person you used to know, he functions intellectually like a 3 - 7 year old and can no longer express himself using language. It is difficult to know what he understands and what he doesn't. He doesn't take direction so something like, "Pick up the ball," does't work. Sometimes "Give me a hug." does work.

He is in a wheel chair all the time because his brain no longer can control his legs, he needs to be fed his meals because he is not able to get things to his mouth by himself except now and then and unexpectedly.

At times he is present, focused, and available but at others distant, confused, and doesnt seem to be "at home." He needs to wear a diaper and be moved from wheel chair to bed by a lift machine to have it changed.

But despite all this, his spirit and soul continue to shine with love and patience and at times humor and even wit and often with smiles and laughter. He is happy, content, well taken care of, and healthy.

He has adjusted fairly easily to Lieberman and I think that his new, more narrow "community" feels good to him. He smiles at fellow residents, says something incoherent which is received back with a smile because the other resident cannot communicate either.

He has a personal care helper, Manny, seven days a week from 11:30-5:30 who is a gift and a blessing. While the Resident Care Aides and round the clock nurses are cheerful, loving, and helpful with most of Gregory's physical needs, there is not enough time in the day and/or their case load to provide the social interaction that is still important to Gregory. So Manny, provides that.

The ratio of resident care aides to resident is 1:10 which is pretty good comparatively and Manny provides the day to day social interaction, exercise support, mealtime feeding and conversation.

He sets  up the DVD with movies and earphones with classical music on an iPod, he reads aloud, takes Gregory out into the garden and down to building functions and concerts. He makes sure Gregory gets enough to drink and plies him with goodies and treats from the refrigerator in the room.

He helps me keep an eye on how Gregory's needs are being met by the facility. Generally he is with Gregory at all times during the peak time of day and the Lieberman people provide good support early mornings and at night.

Many of our friends visit and keep Gregory supplied with flowers, chocolates, and other trinkets. Gregory may not be able to name the friend or explain how he knows them but he always recognizes them as a loving friend and someone important to him. Often after something like, "Oh Wow" or "You again!" he cries tears of joy at seeing the visitor and at the overwhelming feelings of love.

Lieberman Center, the memory care facility, takes wonderful care of him providing medical attention, a safe warm environment, friendly loving helpers, laundry and cleaning services, and good kosher food that even tastes good! They have a 24/7 nursing staff available who keep an eye on Gregory's health, administer medications, treat illnesses like colds.

The center also provides monthly doctor visits, periodic podiatry and vision checks, and brings in other specialty medical help as needed. There is an on duty social worker, activities director, volunteer coordinator, dietitian, restorative ability nurse, physical and occupational therapists, and art therapy. When necessary, Skokie Hospital is just across the parking lot.

I was able to get Gregory on State of Illinois Medicaid in three weeks compared to the usual six months. I have to turn over his Social Security check to Lieberman but otherwise  all of his needs are being paid for. This, as you can imagine, is a relief and helps me to pay for the full time personal helper.

In summary, my life and Gregory's right now are fairly narrowly focused and that is OK. I enjoy visiting Gregory and got away for a long week-end trip to Quebec City recently.

Besides my artistic endeavors, I cannot deal with plans for the future or think about future travel since Gregory continues to loose abilities and I want to be around to support him and to get back as much as I can while he still has bits of communication to give me.

I am strangely content and grateful, as is Gregory, that the Universe continues to line up behind us, helping things to continue to fall into place in our life. Family and friends continue to surround us with love and support.

I think that I am finished with this ramble and as I have said in the past, I want you to know that each one of you means a lot to Gregory and me and we appreciate your being on this journey with us.

Georgia on My Mind

One of the residents on Gregory's floor is Helen. She is a sweet, friendly, older black woman who is supported on a daily basis by her daughter Shirley and her cousin Georgia.

I try to get to know the relatives who visit often because I am there every day visiting Gregory and this is one way to build community with others in a similar situation.

One thing I have learned from those family members I chat with is that while there are often many brothers, sisters, children and grandchildren available, usually only one or two take on the responsibility of caring for the person with Alzheimer's (dementia.)

I have also seen that those who do take the responsibility see it as "what I do" and discount the absence of the others with a shrug or "What are you going to do?" I do not ever detect resentment or anger, just a continued focus of love for the resident family member.

Georgia and I chat and laugh together a lot. She is now retired but worked at a nursing home for close to 38 years. So she knows the drill and is good at it! Our relationship started when she and I were in the elevator going down to the lobby. "Are you leaving now?" I asked.

"No, I am just going out for a breath of fresh air." replied Georgia. The funny thing, and I tease he for it, is that her "Just going out for a breath of fresh air" meant going out to smoke a cigarette.

During a conversation yesterday about the lack of support from family members, Georgia told me that while Helen has many many children and grand children, only she and Helen's daughter Shirley ever visit.

She summed it up this way, "You never hear from family, but when their ham gets burnt they are at your front door for dinner."

Pema Chödrön

Some good advice from Pema Chödrön on how to not feel guilty but rather to allow yourself to continue to be aware and continue to grow as you care for your loved one on their journey with (through) Alzheimer's

P.S. The links do not work on this image.

Musings

This Alzheimer's BLOG receives between 50 and 100 hits a day. Out of some 36,000 hits in the four years since its beginning, there have been 265 comments for a .7% reply rate. But you know what, comments are not expected and notoriously absent when anyone who is a blogger is asked about their experience with comments.

As you know, I do not write for the comments. I write to process my grief and my joy, I write to share our situation with friends and family, I write in case my experiences and observations and insights might help others who are grieving.

We all grief when someone we love is experiencing any terminal, incurable illness. But the way Alzheimer's presents itself is more insidious than only a few other illnesses out there and therefore more painful for both the ones ill and the ones loving and caring for those ill.

Periodically I will run into someone who follows this BLOG and they will tell me how much it means to them or what an inspirational role model I am. This happened on Friday when I was at the Lyric Opera of Chicago's costume sale and I ran into one of the women who sings in the chorus. (Thanks CL!) We exchanged no fewer than three meaningful hugs :-)

Again, while I do not write for the celebrity, and while I know I am doing a good job caring for Gregory, it does make me feel good to hear from others who agree. Being a caregiver for someone you love so much is a heavy, lonely occupation and sharing that love with others and hearing their message helps me to feel lighter!

P.S. Over the last 15 or so years, being in 20 or so operas; many of the people at the opera house have become acquaintances, friends, and family at various levels. I appreciate and value them. I keep up with many of them via Facebook. I haven't been able to be in any operas for three or four years as I could not leave Gregory alone but now that he is safely ensconced at The Lieberman Center, I hope to get cast in an opera this season, or maybe next.

Not Invisible

This wonderful piece by Shel Silverstein could easily apply to Gregory. So I try to make sure lots of attention is given Gregory's way!

17 Alzheimer's Disease Statistics

Gregory with his bear Peaceful

http://www.buzzfeed.com/laraparker/things-no-one-tells-you-about-alzheimers-disease#34j7pcn

Being There

Today as I arrived at Lieberman, a group of developmentally disabled young adults was leaving. Not sure but perhaps they were visiting with residents on the assisted living floors.

As I was waiting for the elevator, one young man appearing very sad and holding the hand of his supervisor passed me. As they passed they paused and the young man told me, "My father died." The supervisor nodded signifying that he was telling the truth.

I said, "I am so sorry to hear that."

"Can I tell you what happened?"

"Sure. Please do."

There was a pause as he continued to shed tears and cry silently thinking about what he wanted to tell me. "He was sick and then he died. I am very sad."

"I am so sorry to hear that. I know you must be very sad." As I said that he leaned his head on my chest and I automatically stroked his head." This only lasted for a few seconds but it was quite meaningful for both the young man and for me.

"Thank you. I am so sad," he said.

"I know. Thank you for telling me." They slowly walked towards the front door and the waiting school busses.

Meaningful.

Meaningful perhaps to the young man because he was able to express his sadness, because someone wanted to listen to him, because my being old he could relate to me as if I was his father?

Meaningful to me because I am still able to walk into difficult situations with love and support and to be there for others no matter how heavy my heart may be, there is always room for more heaviness when it can help another.

Today Was One of Those Days

My phone ring at 9 o'clock this morning. It was Manny saying he had hurt his foot and was unable to walk. He would not be able to help Gregory today. So I got dressed, had a quick breakfast sandwich, and went to visit Greg knowing I would be helping him with lunch, spending time, and then also helping him with dinner.

In some ways it felt like my day been ruined, in other ways I was excited about spending the entire day with Greg. When I arrived it Lieberman, Greg was already at the table in the dining room with his the food sitting in front of him. I don't think he was confused that Manny wasn't there and he was patiently waiting. He was very happy to see me, we hugged, and I gave him a kiss.

Gregory ate his lunch uneventfully. Table conversation with Batia and Martha was fun and a bit of crazy as usual. We went back to his room where I shaved him and we visited until it was time for his nap. While he was napping I left to run a few errands.

I arrived back from my errands to find Gregory's wing's "living area" filled with people listening to Sharon play the piano. This activity was not taking place in the usual place because two residents were in the final hours/days of their stay at Lieberman so keeping their wing more quiet and peaceful was in order.

Friend Pat had also just arrived and was in with Gregory when she had to leave so the aides could get Gregory up from his nap and into his wheelchair. I saw the aides beginning their task so I stayed out in the hall. Pat and I had visited for a while when the door to Gregory's room opened and one of the aides poked out to say Gregory was having a difficult time.

Both Pat and I went into the room to find Gregory arguing, screaming, swearing, flailing, and kind of being physical with the female aide. He had gripped her by the arm and kept pushing his teddy bear at her saying take this, take this. (Meaning take the teddy bear.) She was struggling with him, saying "I don't want the teddy bear." and finally loosened his grip on  her arm.

I got involved by announcing that I was there, everything was OK now, calm down, calm down. I hugged him. Held him. And struggled physically with him but only a little bit. I told the aides that I could handle it now and they left.

Gregory was still being verbal, shaking all over, and upset. He had me by the arm and each time I carefully pulled myself loose, he would grab me again. Eventually, smothered with kisses, and hugs, and love he did calm down. He was still shaking but by massaging his neck and back he was able to calm down.

Pat and I stayed with him until dinner and by then all difficulties had passed. Pat said goodbye as I took Gregory into the dining room. Dinner was uneventful and by 6:30 I said my goodbyes leaving him parked in front of the main TV with the other residents.

What caused this melt down? Don't know for sure but can surmise. Manny was absent. Gregory's nap had been earlier than usual and/or too long. The aide had put his pants on only half way up in case he peed and his legs felt constrained. Pat's visit ended abruptly when the aides arrived which upset him. Gregory's assigned aide is newer to him and therefore unfamiliar. Maybe he had a bad dream. Maybe the noise from the music out in the hall was confusing. Maybe he was frightened. Maybe he was inadvertently hurt by the lift. Maybe he wasn't in charge of what was going on and it was just the Alzheimer's. Maybe it was just a bad day.

Oh My Heart

Yesterday when I arrived to visit Gregory he was being changed by the aides. I didn't let him see me so as not to complicate the situation and waited in the hall until they were finished.

Changing Gregory's diaper (I hate using that word) is at most , when he cooperates, a difficult situation. He is tall, weights 180 lbs, and has to be moved to his bed using a hoyer lift. A sling is inserted behind his back and brought up around his legs. The ends of the sling are attached to the machine and he is lifted into the air, swung around parallel to the bed, and lowered into place.

Then the aides take off his pants (and often his shirt,) clean him up, and put on a new diaper. This is done by rolling him from one side to the other. The aides have to do all the work because he cannot roll himself. Then they put on new clothing, reattach the sling, lift and swing, lower him back into his wheel chair.

I would guess that this is not only a little embarrassing (although I think Gregory is used to it by now,) but uncomfortable and at times painful. Depending on Gregory's "state," it is also frightening for him to be dangling in the air and he becomes resistive, known to swear, kick, and/or struggle. The aides are kind and gentle and are able to "talk him down" but as I said, it is not an easy activity for Gregory or the aides.

That described, yesterday after he was back in his wheel chair, I came into the room. "Hi, its me!" But Gregory was still "recovering" from his ordeal and was unable to focus. I tried to put my face in his line of vision, continued announcing myself, but he was still unable to focus. I think that he was actually unaware that I had arrived.

Finally he did a double take, and I mean a double take like in the movies, and he was able to focus on me, realized who I was, and a large smile came over his face.

Here comes the title of this post: He looked into my eyes, with this oh so pleased look on his face, reached out towards me and said, "Oh, my heart!"

I melted.