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.