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.
Monday, June 30, 2014
i will not live in fear
of falling or catching fire.
i choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
to loosen my heart
until it becomes a wing,
a torch, a promise.
i choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit. ~dawna markova
Saturday, June 28, 2014
For a first visit, I will go to The Lieberman Center with a friend to visit Gregory. I can introduce the visitor to the center, help them find Gregory in his room or at his current activity, provide a buffer in case it is not a good day for Gregory or a support to the visitor if the visitor has difficulties in dealing with Gregory's "Here and Now." After that I release my need to be there to the friend's discretion.
Many people have not wanted to visit Gregory because, I understand this with my entire heart, they cannot bare seeing what he has become.
Others need to see Gregory in his present circumstances so they can come to some closure with what has taken place due to the Alzheimer's.
Others want to be there to support him and to support me.
Some have had similar experiences with their own family members due to either Alzheimer's or the need for a care facility due to illness or old age.
All of the various reasons are based on love.
BUT, sometimes I feel like a game keeper at the zoo. I am there to protect the animals but also to protect the visitors.
I put Gregory on display, hoping he will perform, will show recognition, will behave appropriately.
I will discuss the various types of training he has gone through and the various tricks he can or can no longer perform.
Step right up, step this way, see Gregory in his current condition, in his current situation. Be amazed, be amused at what Alzheimer's has wrought.
Try to explain away the situation, try to understand what is going on in that void, or not.
Ouch. All I can say. Ouch. And sorry for my rantings.
Wednesday, June 25, 2014
Tuesday, June 24, 2014
Monday, June 23, 2014
First his helper Manny called in sick so I spent all day and evening with him, then Pat dropped in for a visit, and then Jan came and spent dinner with us.
Also, less than a week ago, the doctor at Lieberman changed one of Gregory's medications. Aricept, the most well known of the Alzheimer's drugs, can cause stomach problems.
Gregory had been having some digestive problems so they changed from the Aricept to an Excelon Patch. Because the patch is absorbed through the skin into the blood stream, stomach problems are avoided.
We were told to be on the lookout for unexpected changes because of the switch in medications. I didn't expect to see happen what has been happening.
Gregory is more alert, more talkative (although not more coherent,) more animated, and more present (although still unable to communicate.)
One problem with this is that he has been more talkative but still has problems with word use and therefore has been a little more frustrated. So we listen to him, agree, and nod our heads affirmatively. This seems to comfort him.
Also, he seems to be "thinking" more and trying to express what he is thinking, but again is unable to do so and this also frustrates him. I express it this way: It is as if he gets a complete visual image of something he wants to share but as he is struggling to find the words to express the image which he is unable to find, the image slowly fades away.
So he has been alternating between very happy, smily, laughing, joking around and crying, being frustrated, and being mildly angry.
Will be interesting to see what tomorrow brings.
A short while later he got very serious and was almost proselytizing on the beauty and importance of what he understood, "saw," wanted to communicate. His words were bits and fragments, his sentences not finished, his communication nonexistent.
But what he shared was significant to him and therefore to Jan and me. We agreed, shook our heads affirmatively, said we understood.
At one point he seemed to have a revelation saying, "Now I see. It is ... it is ... beautiful. Beautiful. Beautiful. Beautiful. Beautiful. Beautiful.
In this series of photographs you can almost feel Gregory's rapture and Jan's expressive response reflected her calling Gregory's pronouncements, "Sacred Visions."
Saturday, June 21, 2014
Wednesday, June 18, 2014
Each in his own way, the residents connected with the music. Some clapped their hands, some attempted to clap their hands, some smiled, some sang along with a word or two here and there. Some conducted and some rocked their heads in or out of time with the music.
Some sat and stared, some with eyes open, some with eyes closed whether awake or asleep. But you knew that all drifted on the notes as the piano string vibrations entered their beings.
I sat there attending to each face, one at a time, wondering. Who had these people been? What had their lives been like? How did they come to end up at Lieberman? What was going on inside their minds? Were they aware of their situation? Were they aware of their condition?
And my usually smiling, open face showed sadness, tears, regret, loneliness. I chose not to shirk my emotions but rather to ride them out. No major breakdown, no sobbing, no needing to leave the room, no needing to be consoled by others. And ride them out I did. Slowly they receded as I allowed the piano string vibrations to enter my soul and my being.
And it was good. And people were enjoying themselves. People were taking and support staff was giving. And it was good.
Monday, June 16, 2014
Chicago, IL 60622
Saturday, June 14, 2014
Monday, June 9, 2014
Delores Went Home, Martha Joined Us, Batia Loves Gregory, Aaron's Wife Was Upset, and Michael is a Nut
Batia, always verbal if not always understandable, really likes Gregory. When he is down she tries to cheer him up, when he smiles she is happy. Today she commented that Gregory is certainly a handsome man!
I wondered why mild mannered Delores was not at her place and to my relieve found out that she had been at Lieberman for a "vacation" while her family traveled. I was relieved that she, herself, had not taken the "long vacation."
Martha, newly at the table, was not too hungry and I encouraged her to eat a little more, which she did. When she was finished she wanted away from the table and is able to "foot push" herself around in her wheelchair. Gregory's chair was in the way so I moved it over a little to allow Martha to get away from the table.
Martha walked her wheel chair over to me to thank me for encouraging her to eat and for helping her get away from the table before it was time for bed. She stroked my arm and smiled warmly. Then she said, "You can give me a kiss now" and she leaned into my face to receive one, which I surprisingly gave. Then she left the dining room. I think Martha was hitting on me!
Aaron's wife was very upset and was berating the staff for taking her money but NEVER taking care of her husband. He had no knife or fork or glass and his food had gotten cold. "Sitting alone in a corner like a dog," was one of her comments.
No judgements, and I understand her upset, but she doesn't visit all that often. Aaron is mean and angry and yells very loudly when people approach to try to help. I have seen staff continue to approach him anyway, try to help him eat, and be friendly even though he threatens to throw things.
The Nurse Supervisor was called and showed up pretty quickly to try to help take care of the situation. Remember: Never try to reason with someone who is angry. Just say "I see, I see." and bide your time.
By now the tenor of our corner of the dining room had turned sour so Gregory, Manny, and I went back to his room to finish his dessert of canned pears (one of his favorites.)
After he was finished eating, I gave him a manicure. He rightfully got angry with me when I accidentally (after being oh so careful) nicked a cuticle and drew blood.) But he did calm down pretty quickly.
I gave Gregory a largish Teddy Bear a week ago. Now and then, I take it by the back of its neck, sit it on the arm of Gregory's wheel chair, and use it like a puppet, talking in a high voice, "I love you Mr. Man. Am I your favorite Teddy Bear? Let me give you a kiss. Smack. Smack. Etc."
Gregory's comment, looking over at Manny and smiling, "He is a nut!" I loved it!
Sunday, June 8, 2014
Saturday, June 7, 2014
Wednesday, June 4, 2014
If you were planning on doing so, DO NOT BUY the first volume "Sit With Me A While" until it shows up at $15.00. Because it is in-between printings, some enterprising person is trying to sell it at a huge profit, none of which goes to or was OKed by me!
Both are also available at lulu.com (http://www.lulu.com/shop/search.ep?keyWords=horvich&sorter=relevance-desc) for $15.00 each.
New post on Nexus
Tuesday, June 3, 2014
Monday, June 2, 2014
Alaksh joined Gregory and me as Gregory's companion about a year ago. He would spend some 10 to 15 hours with Gregory so I could run errands and have a little time to myself as well as to provide Gregory with companionship and an alternative from being with me .
Alaksh and Gregory and Alaksh and I got to be good friends in a father/son, grandfather/son, fairy god mother/son kind of way.
When Gregory moved to Lieberman's Memory Care Facility, Alaksh would spend time with him there.
Most recently Alaksh has been cooking Indian Cuisine dinners on Sunday nights for Gregory, me, Manny (Gregory's private care aide,) and himself. These meals take place in a second floor classroom which provides a lovely alternative for the general dinning room on the fifth floor. Only the four of us, delicious food, conversation and none of the commotion that is often times present at dinner on the fifth floor.
Today was Alaksh's 25th birthday and Gregory and I were honored that he chose to spend it with us. We ordered out Chinese, Manny presented Alaksh (on behalf of Gregory) with a bouquet of flowers and some almond brioches. I gave Alaksh a copy of my second book of poetry.
We sang the Happy Birthday song several times and Gregory actually tried to join in with a word here and there. When it was time to blow out the birthday cake candle, Alaksh moved the cake near Gregory and encouraged him to blow out the candle.
It took until the candle was almost gone, but with loving repetition and samples of what blowing air through one's mouth looked like by Manny and Alaksh, Gregory finally took a big breath and blew out the candle. All present; Gregory Alaksh, Manny, and I took great pleasure and pride in Gregory's accomplishment.
The following was posted by Alaksh: "Things half said can be so beautiful. Thanks Michael Horvich and Gregory Maire for a beautiful, yet learning and emotional experience in my life....will cherish you guys forever."