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.
Saturday, November 29, 2014
Friday, November 28, 2014
All around me are the beginning signs of Christmas, some since before Halloween. Christmas carols 24/7 on the radio, stores are decorated, lamp posts bewreathed, city Christmas trees waiting for their lighting ceremonies.
But, at least for now, instead of beginning to feel the spirit (and the spirit usually does infect me) I am feeling an emptiness. The emptiness is in the air around me, in the space of the condo, along when I am driving, and filling my heart and emotions. Interesting, emptiness filling me?
For 40 years the most important holiday for Gregory and me has been Christmas. Celebrated with family, celebrated with friends, celebrated just the two of us. Unpacking the tree and ornaments, baking cookies, making hot chocolate, entertaining gifts, giving gifts not only to each other but also to family, friends, service providers, store keepers.
So I sit with my grief, sit with my suffering, sit with my tears and when they settle down get up and get on with my life.
I have decided that I do not want to unpack all the decorations. Too many emotions. So I will unpack just a few of them.
The three foot artificial tree that we have been using for years will sit in front of the living room windows. It is already strung with lights and antique glass German ornaments and waiting to come out of the box where it sits since last year. All I need to do is feather dust the dust and plug it in.
I have five antique brush trees which are approximately 6" tall and wrapped, spiraling top to bottom, with a garland of miniature glass balls. They will sit on the "Changing Collection" shelf in the entrance hall. I'll post a photo when I get them in place.
I might put the wreath on the front door and I might put a smaller artificial tree with lights and bangle baubles on the bookcase that runs the length of the bedroom.
I will make Great Grandma Barbara's German Christmas Cookies, a family tradition going back well over one hundred years to Gregory's mother's father's mother. If you can count that high. But this year, I will not make dozens and dozens of dozens types of cookies. Oh, in thinking, maybe I will make G and my favorite Adeline's Walnut Balls (in vanilla and chocolate.)
What I will most likely do is create some new traditions for myself and see if that helps me through the search.
Today, the day after Thanksgiving, I will take a newly purchased 18" tall plastic tree to Lieberman and Gregory and I will decorate it for his room. We will "twist tie" the ornaments and garland in place so they do not "disappear."
Gregory and I have thought about this in the past and this year I will follow through for both of us on getting $100.00 in singles and passing them out to every person I pass who has set up their "begging bowl."
I promised Vivian, a resident-mate of Gregory's, that if her family didn't bring her a little Christmas tree for her room, I would do it.
As a Christmas/Hannukah thank you to the Lieberman departments, I will drop off bowls of wrapped Christmas peppermint balls and dreidels with a sign that says, "Happy Hannukah, Merry Christmas, Happy Kwanza, Happy New Years, Happy Winter."
For New Years I will offer wrapped Chinese Fortune Cookies in a bowl with a sign that says, "Wishing you Good Fortune in the New Year."
I will see what other "traditions" I can come up with and let you know as the season proceeds. I put the word "traditions" in quotes because I have been accused of the following quote: THE BEST TRADITIONS ARE THE NEW ONES YOU CREATE TODAY!
house we purchased 27 years ago.
Thursday, November 27, 2014
I am aware today that being Thanksgiving has been OK for me. I am completely in the present and not thinking about Gregory and my past Thanksgivings and not thinking about our future ones. (Having typed this is kind of like thinking but not really:-)
I am aware of feeling joyful and happy. I am looking forward to celebrating the holiday. The reason I think is that I have filled today with purpose. I straightened up the condo and emptied the dish washer. I ran a load of laundry. I communicated some on my computer.
I made "Thank You" sign tents to post around Lieberman. This time around no mass distribution of food or candy like other holidays but rather a verbal thank you: Front Desk - Administrative Offices PT/OT - Volunteer Office - Art Therapy - Life Enrichment - Kitchen - Laundry - 5 Floor Nurses Station - Second Floor Building Lounge - Head Nurse: Alicia - Social Worker: Hannah - Activity Director: Alma - G’s RCA: Tomika, Hazel, Luberta - Dining Room: Dorina - Restorative Nurse: Julie - Dietician: Stephanie - Private Care: Manny and Private Care: Connie.
I gave Manny half of today off and I will be with Gregory for Thanksgiving Dinner at Lieberman. For $7.00 I can join in on the whole roasted turkey, dressing, sweet potatoes, cranberry sauce, pumpkin pie. So Gregory and I will be having Thanksgiving Dinner together. I am also looking forward to spending a longer period of time with him instead of the one to three usual hours a day.
I gave Manny off tomorrow so my friend Pat will help Gregory with lunch and I will be with him for dinner again tomorrow.
I did make some "treats" for the immediate helpers on the fifth floor. I baked two 9x13 pans of pecan brownies, cut into a total of 48 pieces.
So in all, I am celebrating Thanksgiving in a new way, in a "here and now" way, in a joyful, wonderful way. I am happy.
This is a low key invitation. Gregory may or may not do well with a large number of people but it is worth the try!
He has been on new meds so hopefully he will not sleep through the events:)The times are tight to make it easier for him.
• • •
Would love for you to join us but this disclaimer also gives you permission to pass without question! Please R.S.V.P. by e-mail, A.S.A.P., if you will join us.Thanks, Michael & GregoryGregory will be having an art show atThe Lieberman Center9700 Gross Point RoadSkokie, Illinoisfeaturing over 26 of his previously seen piecesplus lots of his newer “minis”ONThursday December 4, 20142:00 - 3:006:000 - 6:30Refreshments will be served!
Wednesday, November 26, 2014
Tuesday, November 25, 2014
Fastest growth yet! Just turned 41,000 hits with 524 posts.
Blog Friends, for Christmas gifts I want to go VIRAL and I want to find an agent or publisher for my Alzheimer's manuscript. If you have any contacts I would be appreciative.
Sunday, November 23, 2014
Friday, November 21, 2014
Wednesday, November 19, 2014
Amazing how “together” Gregory still was a short two years ago!
Monday, November 17, 2014
Saturday, November 15, 2014
Thursday, November 13, 2014
Minnie, who sits in the fifth floor lobby, always asks this sequence of questions when I step off the elevator.
"Who are you?"
"Why are you here?"
"I am a visitor."
"Where were you born?"
Today, looking at my stomach, she added, "Are you pregnant?
In reply to where "Where you born?" I answered, "In a hospital."
"A wise guy, huh?" she replied.
Morris always goes out of his way to wish me a "Shabbat Shalom" which is a greeting used to one a happy Sabbath. In Judaism the Sabbath begins on Friday at sun down and lasts until Saturday at sun down. No matter the day; Monday, Tuesday, Wednesday, Thursday, Sunday; no matter the time of day; Morris wishes me "Shabbat Shalom."
Shirley sits by the front door to the Lieberman Center and whenever possible likes to sit in the sun outside the front door. This is how I cam to meet her with my making comments like, "How is the sun today?" "What did you do with the sun today?" "Maybe there will be sun tomorrow." etc. On November 11th, Shirley turned 96. I brought her a card and in the hopes she was not diabetic, a chocolate bar. You would have thought I gave her the world!
Wednesday, November 12, 2014
Tuesday, November 11, 2014
We were ready for a sign off on a new medication after she explained the reason for the change and how the it should help.
They had already done a sleep study, observed Gregory, consulted with his Lieberman provided psychiatrist, and decided on a “baby dose” of Risperidone.
They had been using Ativan on an as necessary basis, had found it necessary to use it every morning for the last week, but that drug is short lived and it was only helping Gregory for a two hour window.
The Risperidone should help throughout the day without over “drugging” him. He will be drowsy for the first week or so but then should acclimate to the drug.
Risperidone is an antipsychotic medicine. It works by changing the effects of chemicals in the brain. Risperidone is used to treat schizophrenia and symptoms of bipolar disorder (manic depression.) It is also used in autistic children to treat symptoms of irritability. Risperidone may also be used of other purposes, like irritability due to dementia.
The online research I have done says that Risperidone is not approved for use in psychotic conditions related to dementia. It may increase the risk of death in older adults with dementia-related conditions.
However, it has been found to help even mood and behavior of residents with Alzheimer's and should help Gregory be more even. It will help him feel more calm (which he has not been for a little while now.)
Also, honestly, the "risk of death" is worth helping Gregory be more comfortable for the time he has left.
I will deeply grieve when he dies but do not need to "hold on" to him for my own sake. I will survive. And so will Gregory, just maybe not in this life.
Sunday, November 9, 2014
Today she was at the Sunday November Birthday Party in the community room sitting not too far away from Gregory, Manny, and me.
She is pleasant enough but approaching her is a little difficult because of her lack of grooming, her being dressed in a night gown instead of something more appropriate to the party, her sad dour look.
I was feeling particularly sad for myself trying to cope with some of the more recent changes Gregory has been going through. Today he was extra quiet, seemed drugged, his neck holding his head at a painfully crooked angle, and his face looking like it was just hanging there.
Manny had tried to prop his head with pillows but instead of Gregory taking the pressure off his neck by leaning on the pillows, he seemed to rather hold it at that awkward angle.
So there I was sitting, holding and stroking Gregory's hand, listening to the singer crooning love songs, with tears running down my eyes.
I looked up and noticed Gayle sitting there looking at us. It seemed as if she had tears in her eyes. I thought to myself, I need to go over and chat with her a little. If I give her some of my love, I might be better able to carry my sorrow.
I walked over to her wheelchair, kneeled down, took her hand and said, "Hi."
She greeted me. "He is so young, you know!" she said about Gregory. "You know I pray for you both every time I see you and your love for each other."
"Sometimes I wonder if there is a God?" she asked.
I thanked her for her prayers and her kind thoughts and tried to cheer her up a little, "Well you know, Gregory is happy and calm and content in his own way. They take very good care of him here. And there is a God if only because of your prayers and smile. We both appreciate that very much."
She smiled back as I took my leave and went back to hold Gregory's hand. It worked. I gave away love and was given love in return, and contentment, and peace.
Friday, November 7, 2014
When Gregory settles into a new "phase" of dementia; I compensate, get creative, learn to provide, cope, and as well get lulled into the false sense of security that this is how it will remain forever.
You have read about his recent "burbling" as a way of "playing with sounds" on his lips and in his mouth and to delight his ears. You have also read about his "routines" which while are not communication do provide positive interaction.
When Gregory is upset and tries to tell you something or when he is calm and tries to explain something he has plenty of words and sounds to use but on the outside, to you or me, they make no sense.
Most of the time he would be calm, content and happy. Now and then he would get upset but that was the exception.
When he would be upset I went into my, "It's all OK. Everything is taken care of. You have nothing to worry about. I have arranged everything." He would eventually ask, "Really?" And I assure him, "Yes." He would calm down. "Oh, good," he would reply.
When he was not upset and trying to explain something I would simply say, "I understand." or "I know." And that would usually satisfy him.
While I enjoyed those interactions and he was happy and alert and calm during that period, my antenna went up anyway watching for where this phase would go.
Recently he seems sad, upset, and not calm. His burbling and routine playing has moved into perseveration with the moods, ups and downs, happys and sads, cycling on and on.
In his interactions, he will become assertive, intense, and demanding. He seems less calm, content, and happy at this time.
It seems as though he gets into a loop and he cannot get out of it by himself. When he does this, the loop goes from one mood to the next quickly with more of them negative than positive.
When Manny or I am with him, we can usually defuse his behavior. When Gregory is with the group watching TV or in an activity before or after Manny or my being there, it is more difficult to control.
Several times he was removed from the group by an aide who was eventually able to calm him down. Recently they had to give Gregory an Ativan (drug for anxiety,) which didn't work so they gave him an Haldol (an antipsychotic as well as other conditions.)
Gregory is a strong man, and a big man, and when he gets upset the staff's concern is for Gregory's own safety and the safety of those around him. Thus the medications. The Lieberman nurses only use medications as a last resort and are very careful with that. I trust them.
So meanwhile, my soul is heavy, hoping that Gregory settles down into an acceptable behavior pattern again, which has happened in the past. At the same time, my intellect is preparing and wondering what steps might need to be taken next.
The psychiatrist has been involved and I have had discussions with the head nurse so I am not on my own in making these decisions. But I am on my own in dealing with my emotions and as I began this post ... the sad side has the advantage right now.
I will keep you informed.
Tuesday, November 4, 2014
Sunday, November 2, 2014
Gregory and I hugged. Manny and I caught up on some "housekeeping" like my returning newly laundered pillow cases, checking to make sure there were enough snacks in the fridge, getting feedback on how Gregory was doing with his tush rash, helping Manny with a few pointers on using his new iPhone (which was a gift from Gregory and me.)
Then Manny "disappeared into the hall" and Gregory and I had some alone time. I told Gregory I loved him, that he makes me happy, and that I like being with him.
I leaned into his left shoulder and with some effort helped him lift his right arm and placed his hand on my head. I could feel him slightly stroking my hair and my tears and a few sobs arrived without warning.
Even though I had set it up, it was wonderful being caressed and touched by the person I love most in the world. I am not sure how much Gregory was aware of the situation.
We just sat quietly like this and then at Gregory's gesture, we moved away from each other. I again said, "I love you."
He replied, "I love you."
I asked, "How much do you love me?"
He replied, "Very much."
I said, "I love you very much too."
"Yes," was his response.
"Thank you." I said.
He answered, "You are welcome."
It was almost like a normal communication. In fact it was a normal communication. One learns not to look too deeply in understanding, mindfulness, or intent. One just enjoys the moment.