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.
Friday, August 30, 2013
Wednesday, August 28, 2013
WISDOM IS INHERENT IN EMOTIONS
One night years ago I came upon my boyfriend passionately embracing another woman. We were in the house of a friend who had a priceless collection of pottery. I was furious and looking for something to throw. Everything I picked up I had to put back down because it was worth at least ten thousand dollars.
I was completely enraged and I couldn’t find an outlet! There were no exits from experiencing my own energy. The absurdity of the situation totally cut through my rage. I went outside and looked at the sky and laughed until I cried.
In vajrayana Buddhism it is said that wisdom is inherent in emotions. When we struggle against our energy we reject the source of wisdom. Anger without the fixation is none other than clear-seeing wisdom. Pride without fixation is experienced as equanimity. The energy of passion when it’s free of grasping is wisdom that sees all the angles.
Tuesday, August 27, 2013
Drive All Suffering Into One’s Ego
Original teaching by Pema Chödrön
February 2013 in honor of her 77th birthday
If he can no longer take his vitamins, he will not take vitamins.
If he can no longer floss or brush, he will not floss or brush.
If he can no longer fold the towels, he will not fold towels.
But if he can no longer eat, does that mean we can just starve?
If he can no longer toilet, does that mean we can just stop shitting?
If he can no longer shower, does that mean we can just have B.O.?
If he can no longer use words, does that mean can just live in silence?
He looks and walks and sits and yawns and sleeps like a real person
But he doesn't understand or communicate anymore like a real person.
He doesn't function or think or understand anymore like a real person
He is broken yet refuses to run down and stop trying to be a person.
If we can no longer live, does that mean we can just die?
I know that the recent BLOGs have been down and depressed. Gregory seems to be going through a lot of loss again recently. I hope he will level out soon and hold, so I can figure how to respectfully, lovingly, supportively be there for him. Right now I do not know how to work with these new losses. Give me a few more days or maybe a week, OK?
Hi Michael,Tomorrow is the first time when I will be spending time with Greg alone. I am super duper excited about it and also a little anxious. Last minute checklist, what all are things that I have to keep in mind. I have read the docs and some of the blogs, I just need some inputs from your experience and also a short list of things that you think would be nice to do.Looking forward to your reply.Thanks and Regards, A
Hi. Wanted to share my book of poetry with you, many of the poems are informed by my same sex partner Gregory and my journey, voyage, roller coaster ride, life with Alzheimer's.
Monday, August 26, 2013
Sunday, August 25, 2013
For approximately 30 minutes he studied the wet wipe in his hand, studied the box, moved over to the toilet, moved back to the sink. Again and again and again. Finally he threw the unused wet wipe into the garbage can and began setting up his electric shaver, at which he was successful. It is the 30 minutes that amazed me.
Saturday, August 24, 2013
Friday, August 23, 2013
Tuesday, August 20, 2013
Sunday, August 18, 2013
According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.
Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.
So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.
Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.
Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."
He pointed to his Medic Alert bracelet, "This?"
Friday, August 16, 2013
- Do the residents have adequate privacy for bathing, toileting and hygiene?
- What safety measures are in place for residents with Alzheimer's and dementia?
- Are there door and window locks, motion detectors, monitoring systems, adequate lighting and no-slip flooring?
- Is there an outdoor patio or walking area that is easily accessible to residents yet enclosed to prevent wandering away from the community?
- How much time does the staff take to gather information about a resident in order to provide the best care for them?
- How does the staff handle challenging resident behavior?
- Do the caregivers have specialized training in effectively communicating with and caring for residents who suffer from Alzheimer’s or dementia?
- Do the caregivers interact with residents in a comforting and professional manner, maintaining their dignity and respect?
- How do the caregivers deal with the progression of the disease?
- Are residents actively engaged in activities that are appropriate and interesting to them?
- How is their hygiene? Do they have brushed hair, are clean-shaven, are wearing matching, clean clothing, and free of incontinence odors?
- Do the residents appear to have a level of dementia that is consistent with your loved one’s current needs and behaviors? In many cases, communities specialize in a certain care level that may not be appropriate for your loved one.
Wednesday, August 14, 2013
I often do not ask his advice because even if he has some, he is unable to communicate it. Now-a-days it sounds more like this. Instead of "What color do you think we should paint the hall?" it is "I was thinking of paining the hall the same shade of white." He will agree. Instead of "When do you want to go visit your family?" it comes out "I think we will go to Michigan to visit your family soon." He will agree. Instead of "Do you want to go to the movies?" it is "We are going to see Batman."
I still work hard at treating Gregory with respect but the face of it has changed. Here is something I just recently noticed. In the past, I would sign a letter, or birthday card, or e-mail: Love, Gregory and Michael. Based on social convention, the person doing the writing always puts their name last.
Then I began to sign them: Michael and Gregory. Now I have begun to sign some of them: Michael (and Gregory.) I guess I have moved to this format to show that it is a communication from me, not necessary discussed with or part of a decision with Gregory. If I know that Gregory would also send love or a greeting if he could, I leave out the parenthesis: Michael and Gregory.
- Spiritual awakening is frequently described as a journey to the top of a mountain. In the process of discovering bodhichitta [the awakened heart], the journey goes down, not up. It’s as if the mountain pointed toward the center of the earth instead of reaching into the sky. Instead of transcending the suffering of all creatures, we move toward the turbulence and doubt. We explore the reality and unpredictability of insecurity and pain, and we try not to push it away. If it takes years, if it takes lifetimes, we let it be as it is. At our own pace, without speed or aggression, we move down and down and down. With us move millions of others, our companions in awakening from fear. At the bottom we discover water, the healing water of bodhichitta. Right down there in the thick of things, we discover the love that will not die.
Tuesday, August 13, 2013
Received this e-mail from Michelle who took us on a tour of "The Reflections."
Friday, August 9, 2013
But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.
This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.
P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.