Samuel Cohen says that Alzheimer's is not normal aging and that we can cure it!
Wednesday, September 30, 2015
Monday, September 28, 2015
A Very Special Thank You Note
Sol Flores, executive director of La Casa Norte, a support organization for Latino families and one with which Gregory and I have close ties, recently visited Gregory.
I received this note in the mail a few days later. You have no idea how much it meant to me. Thank you Sol!
Sol instinctually knew that Gregory exists, and matters. So many people forget the person and only see the disease!
Senior Gems of Alzheimer's
Thanks to Teepa Snow for this look at the stages of Dementia/ Alzheimer's. I had the wonderful chance to hear her speak not long ago. She has the ability to take the complex and make it easier to understand! http://teepasnow.com
Sunday, September 27, 2015
This post at DailyOM is a well written look at the gift of being able to care as a guardian for someone.
http://www.dailyom.com/articles/2015/49850.html
September 27, 2015
Acting as a Guardian
Just Being There
by Madisyn Taylor
To act as a guardian to somebody during a difficult time is a most beautiful gift of support.
One of the greatest gifts we can give another human being is to act as their guardian. Whether this gift is related to a specific situation or is representative of an ongoing commitment, we each benefit from the association. To protect someone is to walk with them in challenging times and see them through safely to the other side. In doing this, we grow with them. And those under our guardianship derive confidence from our support and assistance, enabling them to persevere through almost any conditions.
There are many reasons we feel inspired to serve as guardians to those we care for. Sometimes just holding the space for somebody allows them to do what is necessary to grow or heal. We may simply want to see that our friend or loved one is taken care of and equipped to prevail over difficult circumstances. We may also sense that we are in possession of knowledge our loved ones are lacking yet need in their current stage of development. Our offer to serve as a guardian may also be both unsolicited and unrelated to any one situation. Instead of helping someone we care about cope with a specific challenge, we may find ourselves providing them with a more general form of emotional sustenance that prepares and strengthens them for challenges yet to come.
Our ability to empathize with those under our guardianship is our greatest asset because our comprehension of their needs allows us to determine how we can best serve them. Even when this comprehension is limited, however, the loving intentions with which we enter into our role as guardian ensure that our care and protection help others grow as individuals while living their lives with grace.
http://www.dailyom.com/articles/2015/49850.html
September 27, 2015
Acting as a Guardian
Just Being There
by Madisyn Taylor
One of the greatest gifts we can give another human being is to act as their guardian. Whether this gift is related to a specific situation or is representative of an ongoing commitment, we each benefit from the association. To protect someone is to walk with them in challenging times and see them through safely to the other side. In doing this, we grow with them. And those under our guardianship derive confidence from our support and assistance, enabling them to persevere through almost any conditions.
There are many reasons we feel inspired to serve as guardians to those we care for. Sometimes just holding the space for somebody allows them to do what is necessary to grow or heal. We may simply want to see that our friend or loved one is taken care of and equipped to prevail over difficult circumstances. We may also sense that we are in possession of knowledge our loved ones are lacking yet need in their current stage of development. Our offer to serve as a guardian may also be both unsolicited and unrelated to any one situation. Instead of helping someone we care about cope with a specific challenge, we may find ourselves providing them with a more general form of emotional sustenance that prepares and strengthens them for challenges yet to come.
Our ability to empathize with those under our guardianship is our greatest asset because our comprehension of their needs allows us to determine how we can best serve them. Even when this comprehension is limited, however, the loving intentions with which we enter into our role as guardian ensure that our care and protection help others grow as individuals while living their lives with grace.
Living Alone With Dementia
Besides my own writing, you may have noticed that I have begun to include the writing of others on this blog. The "Others" are people with dementia and the writing is from what I call the "REAL" side of it, the side of the person who is living with dementia.
Early on, a buffer protected Gregory from really realizing his situation, his decline and we were never really able to discuss what it was like from his point of view.
I certainly worked at holding his point of view in all (most) of my actions if only because of our love, our 40+ years together, my observations, my research and studies on Dementia/ Alzheimer's.
But until I met Kate Swaffer, I never really understood what it must have been like for Gregory in so many ways.
This article shared by Kate Swaffer, written by Dr. Judy Galvin, goes one step further. It is from the point of view of a person with dementia who lives alone, a scenario I never even began to consider.
Yet another "gift" of Alzheimer's to me as I continue to grow in patience, compassion, and understanding not only towards Gregory but all of humanity. That may sound self-serving and grand, but so is Alzheimer's!
http://kateswaffer.com/2015/09/27/living-alone-with-dementia-by-dr-judy-galvin-dam2015-day-27/comment-page-1/#comment-60637
Early on, a buffer protected Gregory from really realizing his situation, his decline and we were never really able to discuss what it was like from his point of view.
I certainly worked at holding his point of view in all (most) of my actions if only because of our love, our 40+ years together, my observations, my research and studies on Dementia/ Alzheimer's.
But until I met Kate Swaffer, I never really understood what it must have been like for Gregory in so many ways.
This article shared by Kate Swaffer, written by Dr. Judy Galvin, goes one step further. It is from the point of view of a person with dementia who lives alone, a scenario I never even began to consider.
Yet another "gift" of Alzheimer's to me as I continue to grow in patience, compassion, and understanding not only towards Gregory but all of humanity. That may sound self-serving and grand, but so is Alzheimer's!
http://kateswaffer.com/2015/09/27/living-alone-with-dementia-by-dr-judy-galvin-dam2015-day-27/comment-page-1/#comment-60637
Thursday, September 24, 2015
Today's Visit
Gregory requesting his Peaceful the Bear
from the nightstand.
Family portrait: Gregory, Peaceful, and Michael
Gregory was coincidentally dressed
to match the mum I brought.
to match the mum I brought.
Almost smiling but definitely happy!
Who doesn't love a Starbuck's Latte?
Gregory happily "cooing."
Close-up of Gregory happily "cooing."
Training the Trainers
Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.
Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers.
Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers.
I am reprinting part of it here, you can click through to the entire post using the link below.
Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.
Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.
While my first thought was "it was done with love" (which made me feel better) and my next thought was "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved.
Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.
They might answer the question you're about to answer.
They might talk over you
They might point out your mistakes
They might correct you
They might talk about to others when you’re there.
They might speak too quickly for you
They might interrupt you in full flow
They might dismiss what you say as untrue or false.
They may patronise you.
They may frequently undermine you
They may expose you to failure just to show others they’re right.
They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.
They may control you
They may disempower you.
They may blame you for your dementia
They may tell you off
They may treat you as ‘full blown’ from the moment of diagnosis.
They may hide things from you.
They may contradict you
They may try to rip you off or deceive you
They may ignore you.
They may take away your independence.
They will frequently test you
They may exclude you
They may shout scream or cry.
They may humiliate you or make you feel a burden, when offloading about how stressed they are.
Wednesday, September 23, 2015
Massage Nirvana
Today was Gregory's first meeting with the hospice massage therapist. Ernie Love, perfect name for how good he was, taught for 30 years then went into massage therapy. He volunteers his time with Midwest Palliative Care and Hospice.
I filled Ernie in a little about Gregory: past and present. He was very gentle with Gregory and most of his body work (done on Gregory in his wheel chair) was informed not only by experience but also by intuition and his ability to read Gregory's reaction and involvement in the massage process.
While working with Gregory, Ernie would talk about what he was doing, what he was experiencing, and what feedback he was feeling from Gregory. Then he would come over to me and demonstrate on my neck, my back, my head: what he was doing with Gregory and why.
Gregory trusted him from the beginning and disappeared (in a good way) into the process including working with Ernie during various moves. You could see Gregory concentrating, pushing back, rocking into Ernie's motions. Gregory would grimace but less due to being in pain and more to the good pain of having your muscles, tissue, joints, etc moved, flexed, stretched.
Periodically I would ask Gregory if he was OK and he would reply "OK." I would ask, "Is it good?" and he would reply "Good." The amazing response came after approximately an hour of work. Ernie sensed that Gregory had had enough of a workout and told Gregory he was finished with the massage. Gregory gave a big sigh and without prompting said, "Wonderful."
Both Manny and I watched and listened and agreed that we learned a lot from Ernie. His philosophy was to help Gregory, especially since he is always in his wheelchair, get in touch again with his body and to be aware of the movements, pressure points, releases. Ernie referred to Gregory's body being able to get in touch with his "new normal."
Manny, Halina, and I will continue to give Gregory massage work and Ernie will be back again on Monday. Being a volunteer we are not sure how often he will be able to visit but we are grateful to him and to Midwest Hospice for the experience today.
I filled Ernie in a little about Gregory: past and present. He was very gentle with Gregory and most of his body work (done on Gregory in his wheel chair) was informed not only by experience but also by intuition and his ability to read Gregory's reaction and involvement in the massage process.
While working with Gregory, Ernie would talk about what he was doing, what he was experiencing, and what feedback he was feeling from Gregory. Then he would come over to me and demonstrate on my neck, my back, my head: what he was doing with Gregory and why.
Gregory trusted him from the beginning and disappeared (in a good way) into the process including working with Ernie during various moves. You could see Gregory concentrating, pushing back, rocking into Ernie's motions. Gregory would grimace but less due to being in pain and more to the good pain of having your muscles, tissue, joints, etc moved, flexed, stretched.
Periodically I would ask Gregory if he was OK and he would reply "OK." I would ask, "Is it good?" and he would reply "Good." The amazing response came after approximately an hour of work. Ernie sensed that Gregory had had enough of a workout and told Gregory he was finished with the massage. Gregory gave a big sigh and without prompting said, "Wonderful."
Both Manny and I watched and listened and agreed that we learned a lot from Ernie. His philosophy was to help Gregory, especially since he is always in his wheelchair, get in touch again with his body and to be aware of the movements, pressure points, releases. Ernie referred to Gregory's body being able to get in touch with his "new normal."
Manny, Halina, and I will continue to give Gregory massage work and Ernie will be back again on Monday. Being a volunteer we are not sure how often he will be able to visit but we are grateful to him and to Midwest Hospice for the experience today.
Hatikvah
As we welcome in the Jewish New Year, 5776, these ideas come to me.
There is something about this piece, Hatikvah, the national anthem for Israel, that always moves me to tears. For me, it holds the hopes and prayers of not only the Jewish People but also any person, any group of people, any country who has yearned and worked for the right to be who they were meant to be, to be free from oppression because of their beliefs.
Most recently at the Lieberman Center, at a Sunday Concert, the performer played it with gusto on our grand piano. Slowly you could hear the under current of voices joining in, sometimes knowing the words other times just humming. Voices weak, weary, confused, lost or otherwise. Voices strong, resilient, sentient, determined or otherwise.
Never overwhelming the music, but raising from the heart, from the soul, from the place where ancestors live; much like a prayer, to blend in with life, love, freedom, and joy.
CLICK HERE AND LISTEN AND WATCH
Grief
The way we learn is through direct experience, not by reading about something or being told about it by others. That book or that other person, however, may be a catalyst to help you begin the process of learning. I am posting the following DailyOM because it speaks to grief in a way that I have directly experienced it. If its wisdom can be passed on to help you begin to see grief the same way, may you know you are not alone!
http://www.dailyom.com
Grief can arise from many life situations, but know it is not a permanent state of being.
September 23, 2015
The Process of Grieving
Becoming Whole Again
When we experience any kind of devastating loss, whether it is the loss of a loved one, a dream, or a relationship, feelings may arise within us that are overwhelming or difficult to cope with. This sense of grief can also come up when we are separated from anyone or anything we have welcomed into our lives. And while it may feel like we are caught up in a never-ending spiral of sadness and emptiness, it is important to remember that the grief we are feeling is not a permanent state of being. Rather, grief is part of the process of letting go that in many ways can be a gift, allowing us to go deeper within ourselves to rediscover the light amidst the seeming darkness.
The emotions that accompany any kind of loss can be intense and varied. A sense of shock or denial is often the first reaction, to be replaced by anger. Sometimes this anger can be directed at your loved one for “abandoning” you; at other times you may feel outrage toward the universe for what you are enduring. And while there are stages of grief that people go through – moving from denial to anger to bargaining to depression to acceptance – the cycles of grief often move in spirals, sometimes circling forward and then back again. You may even experience moments of strength, faith, and laughter in between. While these emotions seem to come and go sporadically, it is important to feel them, accept them, and allow them to flow. With time, patience, and compassion, you will eventually find your center again.
As we move through our grief, we may find ourselves reluctant to release our pain, fearing we are letting go of who or what we have lost. We may even regard our movement toward healing as an act of disloyalty or giving up. Know that while the hurt may fade, the essence of what you had and who you loved will have already transformed you and forever stay with you. If anything, once you are ready for the pain of your loss to subside, their memories can then live more fully within you. Remember, that healing is a part of the spiraling cycles of grief, and that in letting yourself feel restored again, you are surrendering to a natural movement that is part of the dance of life.
http://www.dailyom.com
Grief can arise from many life situations, but know it is not a permanent state of being.
September 23, 2015
The Process of Grieving
Becoming Whole Again
When we experience any kind of devastating loss, whether it is the loss of a loved one, a dream, or a relationship, feelings may arise within us that are overwhelming or difficult to cope with. This sense of grief can also come up when we are separated from anyone or anything we have welcomed into our lives. And while it may feel like we are caught up in a never-ending spiral of sadness and emptiness, it is important to remember that the grief we are feeling is not a permanent state of being. Rather, grief is part of the process of letting go that in many ways can be a gift, allowing us to go deeper within ourselves to rediscover the light amidst the seeming darkness.
The emotions that accompany any kind of loss can be intense and varied. A sense of shock or denial is often the first reaction, to be replaced by anger. Sometimes this anger can be directed at your loved one for “abandoning” you; at other times you may feel outrage toward the universe for what you are enduring. And while there are stages of grief that people go through – moving from denial to anger to bargaining to depression to acceptance – the cycles of grief often move in spirals, sometimes circling forward and then back again. You may even experience moments of strength, faith, and laughter in between. While these emotions seem to come and go sporadically, it is important to feel them, accept them, and allow them to flow. With time, patience, and compassion, you will eventually find your center again.
As we move through our grief, we may find ourselves reluctant to release our pain, fearing we are letting go of who or what we have lost. We may even regard our movement toward healing as an act of disloyalty or giving up. Know that while the hurt may fade, the essence of what you had and who you loved will have already transformed you and forever stay with you. If anything, once you are ready for the pain of your loss to subside, their memories can then live more fully within you. Remember, that healing is a part of the spiraling cycles of grief, and that in letting yourself feel restored again, you are surrendering to a natural movement that is part of the dance of life.
Tuesday, September 22, 2015
Yom Kippur 2015
For Rosh Hashanah Jewish tradition has one go to the water to cast off one's sins. Traditionally, Gregory and I would visit Light House Beach on Yom Kippur to do our casting off.
"Sins" is another discussion not appropriate here.
Anyway, I had a lovely 30 or so minutes at the beach with Gregory in my thoughts.
Seagulls were singing, waves were singing, crickets were singing, the wind in my ears was singing.
All in all I believe Gregory and my New Year will be a good one!
Happy New Year to all my Jewish family and friends and wishing a GOOD year for everyone I know, and those I don't know as well!
"Sins" is another discussion not appropriate here.
Anyway, I had a lovely 30 or so minutes at the beach with Gregory in my thoughts.
Seagulls were singing, waves were singing, crickets were singing, the wind in my ears was singing.
All in all I believe Gregory and my New Year will be a good one!
Happy New Year to all my Jewish family and friends and wishing a GOOD year for everyone I know, and those I don't know as well!
Taking a Bath Made Easy
Came across this wonderful article on helping a PWD (Person With Dementia) successfully take a bath! Professional and family caregivers often report bathing as one of the most challenging areas of dementia care. People with dementia often refuse, withdraw, or fight during a bath or shower. There are many things that can trigger these unhealthy responses and many of these triggers can be controlled.
CLICK HERE TO SEE ARTICLE:
http://www.crisisprevention.com/Blog/October-2010/Tips-To-Reduce-Bathing-and-Showering-Challenges-A
CLICK HERE TO SEE ARTICLE:
http://www.crisisprevention.com/Blog/October-2010/Tips-To-Reduce-Bathing-and-Showering-Challenges-A
Sunday, September 20, 2015
Thinking About Gregory
Let me move to some changes I have been able to make in my thinking based on my new awareness of who I am.
Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing.
Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!
"Storm and Stress" is the English translation of Strum und Drang, a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.
So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.
Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30.
He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats.
He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.
I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?
So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.
If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.
But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.
It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that.
A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.
Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.
I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!
I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!
So back to
Lately I have been thinking a lot about Gregory and his situation. While Lieberman does a pretty wonderful job of taking care of the residents on Gregory's unit, there is so much more they could be doing.
Much of the "strum und drang" of the unit could be alleviated by what to me, seem simple, easy to accomplish measures. In short, my erroneous belief that I could run the place better than the mass of trained professionals that currently do run it, it getting in my way!
"Storm and Stress" is the English translation of Strum und Drang, a German literary movement that emphasized the volatile emotional life of the individual. And at times life on the Special Memory Care Unit at Lieberman does reflect the volatile emotional life of all of the individuals involved: residents, staff, administration, and family.
So I have been lying awake at night, going over what I think and what I would say to make change at Lieberman. No need to say I have been losing precious hours of sleep and working myself into a tizzy.
Then I think of Gregory in particular. He is content, happy, well taken care of. Besides the excellent parts of life and staff at Lieberman, he has Manny and Halina to care for him from 11:30-5:30.
He has me to visit almost every day with love overflowing as well as flowers, chocolate, and other treats.
He has his Midwest Palliative Hospice Care nurse, social worker, Rabbi, music therapist, massage therapist to keep an extra eye on him.
I think that in some ways, my thoughts about making Gregory's life at Lieberman (as well as helping the other residents on the unit) are more about trying to bring back the pre-Dementia/ Alzheimer's Gregory and making all the changes and difficulties of being on that path go away. But that is fantasy, isn't it?
So here comes my growth through Buddhism: Perhaps I should back off from feeling that I can make major changes in the life at Lieberman's Memory Care Unit.
If I feel sad about his situation, it is sad. If I am worried, it is worrisome. If I allow the "down side" to make me unhappy, I am unhappy. If I focus on what is bad, that is all I see and I loose the joy of what is good. If I see it as suffering, I suffer.
But If I am grateful and happy, that is how I feel. If I look closely and realize that for the most part Gregory is doing well in his environment, then I feel good also.
It turns out that my unhappiness is of no use to Gregory. My unhappiness does not make Gregory any happier. In some ways he probably can detect that I am unhappy and that has a negative effect on him. If I am happy he can feel that.
A lesson here is that Gregory just is ... and in some ways that is more in touch with reality than I am.
Notice your innermost feelings when you think of a very sad situation and then switch to a very happy situation and put a smile on your face. It feels different doesn't it? It is very hard to feel unhappy if you put a smile on your face and feel happy. At least I find it works for me.
I guess you could put a smile on your face and at the same time tell yourself you are feeling sad and unhappy but why cancel out the good effect of a smile when you don't have to!
I guess this is when people talk about choosing to be happy or sad under any conditions, no matter how difficult. I think that if you look hard enough you can find a little ray of sunshine even behind the darkest clouds. Trite saying but true!
So back to
Saturday, September 19, 2015
ALZHEIMER's: A Love Story - The Documentary
As of 9/19/15, the documentary has been accepted into six (6) film festivals: 1) RHODE ISLAND INTERNATIONAL FILM FESTIVAL, 2) DOCUWEST in Denver, 3) DOCUTAH in St. George Utah, 4) CHAGRIN FILM FEST, in Chagrin Falls, Ohio, 5) LAGUNA FILM FESTIVAL in Laguna Beach, California, and 6) SAN PEDRO INTERNATIONAL FILM FESTIVAL in San Pedro, California.
See below for more info.
THE DOCUMENTARY "ALZHEIMER'S: A LOVE STORY," DONE AT CHAPMAN UNIVERSITY, DODGE COLLEGE OF FILM AND MEDIA ARTS AS PART OF THE COMMUNITY VOICES PROGRAM. It will be available for public viewing sometime in 2016 after it has been entered into any number of film festivals. Watch for it here! Meanwhile check this page for periodic updates!
By Gabe Schimmel, Monica Petruzzelli, Amanda Le, and Riani Astuti featuring Gregory Maire and Michael Horvich.
See below for more info.
THE DOCUMENTARY "ALZHEIMER'S: A LOVE STORY," DONE AT CHAPMAN UNIVERSITY, DODGE COLLEGE OF FILM AND MEDIA ARTS AS PART OF THE COMMUNITY VOICES PROGRAM. It will be available for public viewing sometime in 2016 after it has been entered into any number of film festivals. Watch for it here! Meanwhile check this page for periodic updates!
By Gabe Schimmel, Monica Petruzzelli, Amanda Le, and Riani Astuti featuring Gregory Maire and Michael Horvich.
What Am I? Some Beginning Thoguths
This entry was also posted on my writers blog as it includes both general writing and Dementia/ Alzheimer's thoughts.
I have been reading Dropping Ashes On The Buddha: The Teaching of Zen Master Seung Sahn. Through questions, dialogues, stories, interviews, and Darma speeches, he shares his knowledge of Buddhism.
In many of the writings, it is suggested that one meditate on "What am I?" as a way to finding the Buddha. While that sounds a little self serving, I did want to write about my thoughts on "what I am" in relation to what I have learned through my studies of Buddhism.
As I have mentioned in previous posts, I was born Jewish and have studied many religions but have never found as much "Peace of Mind" in any of them as I recently have found in my studies of Buddhism.
In my current situation with Gregory and our path with his Dementia/Alzheiemer's I desperately needed, and have gratefully found some Peace of Mind.
So here are some of my current thoughts on "What am I?"
What I Am?
I was me before I was born into a Jewish family, raised with Jewish traditions and beliefs, had my Bar-Mitzvah.
I was me before I went through the usual sequence of schooling: Primary, Secondary, College, Post Graduate Work, Workshops, Seminars, Training Sessions, Textual Readings.
I was me before I was told what and how to think by my parents, relatives, neighbors, friends, teachers, religious leaders, books, newspapers, films, TV, and the general world around me.
For that matter I was me before I learned anything; while I lie in my diapers, wet or otherwise, suckled my mother's tit and then the rubber nipple, slowly ate pureed foods and then moved on to solids.
I was me before I realized I had a civilization, a culture, and a full background of experiences on which to base my thoughts, understandings, feelings, emotions, etc.
I was me before I had language to label, classify, and categorize things and definitely before I had likes and dislikes, rights and wrongs, happys and sads, successes and failures.
I was me before I realized the difference between male and female, before realizing I was a male, a gay male at that who had deep feelings for other men; comradely feelings, sexual feelings, love feelings.
I was me before I considered myself an educator, a poet, a writer, a photographer, a bookbinder, an actor, an artist, and more.
So if I am not able to use any of this information to tell you "Who I am" then who am I? Lets use the concept of "emptiness." If I am just who I am without using any of the "baggage" I have come to accept about myself; through what I have heard, through what I have been told, through what I have experienced, through what I have learned; then I am just who I am.
I can be empty, without any judgement of myself and my life. I can create how and with what I want to fill myself, as long as I hold on to the idea that "in the beginning" there was this baby born into this world, and he was pure, and his was truth, and he was in touch with all he needed to know. That is who I am!
Let me move to the next level of my thinking.
I sit here and I see. It is as if I live in this body and my eyes are the window to my world. It is as if I sit at a console with a screen in front of me which is attached to a camera and I monitor the world in front of me, and around me as I rotate the camera.
I see a green coffee mug with steaming, delicious liquid in front of me and I raise it to my lips, take a careful not to burn my tongue sip, and place it gingerly back down on its coaster so as not to leave a ring on the console.
But if I take myself back to my pre-labeling, classifying, and categorizing self where am I? What am I doing? How do I describe it? How do I think about it? Do I assign good or bad to it, happy or sad to it, right or wrong to it?
Or is it just what it is? I see what I see. I see.
Each night I read a little more of Dropping Ashes On The Buddha. Perhaps it is slowly affecting my thinking. As I was drifting off to sleep, my kitty at my side, I was stroking her fur thinking how soft she is. I realized I had labeled her "kitty" and her "fur" and described the feeling as "soft."
So then I tried to just feel her without adding any descriptors, with keeping my mind empty, and I seemed to experience her in a totally new, and different way than I ever had. With no words to get in the way, although I use them now, "softness" seemed a whole new experience for me. I was amazed.
What Am I? If I am able to not label things in my life as good or bad, happy or sad. If I see them just as things without positive or negative value, if I can avoid labeling, if I can avoid judging, then suffering can be defused. It can cease to exist. And what does exist is just existence.
Life is what it is. I am what I am. There is an emptiness involved when you do not have to fill up your life, your person; with descriptors, with qualifiers, with judgments, with labels, with rights and wrongs, with goods and bad.
It is what it is. It is how you choose to live it.
Friday, September 18, 2015
The Case for "Living Beyond Dementia"
Again my friend in Australia, Kate Swaffer (who is living well beyond dementia) so accurately, articulately, if not eloquently states the case for living beyond a diagnosis of dementia. I share he current post here: CLICK HERE TO SEE POST
Thursday, September 17, 2015
A Novel Idea
Edie and Anne are new blog friends from Victoria Australia.
Novel idea – dementia-friendly street party to de-stigmatise condition
- Edie and Anne are a couple from Victoria. Edie is living with younger onset dementia. Edie and Anne are calling for the “more informed” among us to take action and assist in spreading helpful and positive messages to de-stigmatise dementia and create more dementia-friendly communities. And what better way to celebrate than with a big dementia-friendly street party? #ItStartsWithYou
Monday, September 14, 2015
New Milestones
Thanks for counting along with me and being a loyal reader. As of today we are 20 hits over 64,000 with 1257 posts.
Yesterday, ALZHEIMER's: A Love Story played at the DocuWest Film Festival in Denver. Alaksh, previous companion to Gregory and now "family member," and Kat, friend and Roger's niece, were in the audience. They reported that the audience responded deeply to the documentary. There were 7 others, each receiving applause when over, and ours which created a still, pensive, moved silence before the applause began. That has to be a good sign!
Sunday, September 13, 2015
Appendectomy With An Awareness
This took place last Tuesday, September 8.
The severe pain started at 10:00 Tuesday night. I took myself to ER at 3:00 Wednesday morning. Had surgery by 9:00.
God Son Isaac sat with me during recovery. Jan, his mom/my friend, dropped by to spell him. Slept fairly well. Came home Thursday by 10:00 driven home by Manny.
Doing fairly well and taking it easy at home. Amazing what they can do now-a-days. EVERY doctor, nurse, aide, staff member at Evanston Hospital was cheery, friendly, helpful, caring.
The food was horrible: sewer water chicken soup, oily red jello, bitter tasteless coffee.
The great timing of all this is that I was due to fly to Portland to visit friend Pat on Wednesday. Can you imagine how this would have come down if I was on the airplane or even in a new city without my own home for comfort? I am grateful to the Universe.
Given the situation, and my staying low key, I haven't visited with Gregory since last Tuesday, some 5 days ago. In debating whether or not to visit today (still feeling a little stomachy and nauseous) I realized that I constantly think about him non-stop. Even thought we are not living together, his presence is with me emotionally, physically, and intellectually.
I know that he is in good hands with Lieberman and Manny and Halina. The reality is that after five days he may not remember me or think about me as I do him. I'm not saying that he does't know who I am anymore, but without the trigger of seeing me, I am probably not part of his awareness.
This led me to the realization that I NEED him MORE than he NEEDS me! Interesting. As long as he is happy, content, safe, well fed, kept clean, and somewhat entertained ... his life is full and he is OK.
I am the one who suffers when we do not see each other. Not really sure what all this means so will have to think more about it. But an interesting awareness don't you agree?
The severe pain started at 10:00 Tuesday night. I took myself to ER at 3:00 Wednesday morning. Had surgery by 9:00.
God Son Isaac sat with me during recovery. Jan, his mom/my friend, dropped by to spell him. Slept fairly well. Came home Thursday by 10:00 driven home by Manny.
Doing fairly well and taking it easy at home. Amazing what they can do now-a-days. EVERY doctor, nurse, aide, staff member at Evanston Hospital was cheery, friendly, helpful, caring.
The food was horrible: sewer water chicken soup, oily red jello, bitter tasteless coffee.
The great timing of all this is that I was due to fly to Portland to visit friend Pat on Wednesday. Can you imagine how this would have come down if I was on the airplane or even in a new city without my own home for comfort? I am grateful to the Universe.
Given the situation, and my staying low key, I haven't visited with Gregory since last Tuesday, some 5 days ago. In debating whether or not to visit today (still feeling a little stomachy and nauseous) I realized that I constantly think about him non-stop. Even thought we are not living together, his presence is with me emotionally, physically, and intellectually.
I know that he is in good hands with Lieberman and Manny and Halina. The reality is that after five days he may not remember me or think about me as I do him. I'm not saying that he does't know who I am anymore, but without the trigger of seeing me, I am probably not part of his awareness.
This led me to the realization that I NEED him MORE than he NEEDS me! Interesting. As long as he is happy, content, safe, well fed, kept clean, and somewhat entertained ... his life is full and he is OK.
I am the one who suffers when we do not see each other. Not really sure what all this means so will have to think more about it. But an interesting awareness don't you agree?
Friday, September 11, 2015
Communication By Facial Expression
When I visit Gregory during meal time, which I often do, Manny and I take turns helping him with his meal.
When Gregory is with Manny, I help the other people at the table with their cloth napkins (do not call them bibs,) open and pour their thickened juice drinks, get a glass of ice water for Gregory and Martha (they seem to prefer it to the juice) and sometimes I help with feeding those who cannot do it themselves.
Directly across from Gregory is Alvira (close but not really her name to protect the innocent.) She is blind from what I can tell and when she does feed herself it is usually with her hands. Most often she waits patiently until one of the CNAs can help her, but on very busy days, I chip in.
She opens her mouth very little and therefore it is hard to get any food in. It is kind of like a balancing act but if one pays careful attention, one can get the spoon to her mouth at the right time and unload most of the food. She is on a "Puree Diet" so the food is creamy, moosey, custardy and it goes down easily.
When she is ready for the next bite, she will put her gnarled hand on your arm and stroke it. When helped patiently, she eats quite a full meal.
Yesterday I was helping her eat and I noticed that Gregory was watching us. He had such an engaged, empathetic, grateful look on his face watching me help Alvira. He needed no words to communicate to me that he was happy I was helping her and in some ways wished he could. His empathy for those around him is great and it is beautiful to see.
When Gregory is with Manny, I help the other people at the table with their cloth napkins (do not call them bibs,) open and pour their thickened juice drinks, get a glass of ice water for Gregory and Martha (they seem to prefer it to the juice) and sometimes I help with feeding those who cannot do it themselves.
Directly across from Gregory is Alvira (close but not really her name to protect the innocent.) She is blind from what I can tell and when she does feed herself it is usually with her hands. Most often she waits patiently until one of the CNAs can help her, but on very busy days, I chip in.
She opens her mouth very little and therefore it is hard to get any food in. It is kind of like a balancing act but if one pays careful attention, one can get the spoon to her mouth at the right time and unload most of the food. She is on a "Puree Diet" so the food is creamy, moosey, custardy and it goes down easily.
When she is ready for the next bite, she will put her gnarled hand on your arm and stroke it. When helped patiently, she eats quite a full meal.
Yesterday I was helping her eat and I noticed that Gregory was watching us. He had such an engaged, empathetic, grateful look on his face watching me help Alvira. He needed no words to communicate to me that he was happy I was helping her and in some ways wished he could. His empathy for those around him is great and it is beautiful to see.
Good Will Ambassador
When I visit Gregory during meal time, which I often do, Manny and I take turns helping him with his meal.
When Gregory is with Manny, I become a good will ambassador in the dining room. I circulate among all of the tables chatting with the residents. I know almost all of them by name.
I free free to tap a shoulder or hold a hand. I have even been brave enough to offer a kiss or hug now and then to a few of them.
I ask how they are feeling, I ask after their day. I listen to their comments and complaints. I compliment their clothing or their new hairdo.
Sometimes they will ask me for more juice, or a bit more food. Sometimes they will ask for, or I will suggest, a PBJ or toasted cheese sandwich if they do not like the day's food offerings.
I offer to help a resident cut up the chicken into easy bite size peaces. Sometimes the resident will refuse. I respect their refusal but quality by saying, "I used to be a waiter, you know!" Often she will relent and push the plate toward me for cutting.
Sometimes I will let a CNA know that "so and so" hasn't eaten any of her meal or "so and so" is so sleepy that she is nodding off into her mashed potatoes.
Sometimes a residents feel frightened or confused and I can help calm them, sometimes if only for the moment with their returning to the same fears moments later. But at least for the moment of our interaction, they felt peace.
Sometimes they mumble or gesture and I behave as though I know what they are saying with a nondescript: "Uh huh" or "I see!" or "I know what you mean." If they are mumbling with a happy face I know that I should enjoy with them. If they are mumbling with an unhappy face, I know I should empathize or comfort them.
Often I will lie. Lie to a resident about when their son is coming to visit, how they can get home before dinner, if their husband is still at work, if they can go down to buy a new pair of shoes.
I have found that the "lying" comes fairly easily if I have no expectations of solving a problem or understanding what the problem is. Also my background in writing "Creative Non-Fiction" helps me weave stories for the resident that meets their needs, even if incorrect or a lie.
Notice that I have used the words OFTEN and SOMETIMES a lot. This reflects that day by day, hour by hour, sometimes moment by moment perceptions; needs, moods etc are in a constant state of change for many residents. For some residents, they are not at all present but still will respond to a touch, or a song, or the taste of food on their lips.
I get great joy in my role of Good Will Ambassador and feel that this should be a role on the unit. One person could be available just to chat, interact, smile, tap, shake a hand, tell a story, listen to a story. Wouldn't that be lovely?
When Gregory is with Manny, I become a good will ambassador in the dining room. I circulate among all of the tables chatting with the residents. I know almost all of them by name.
I free free to tap a shoulder or hold a hand. I have even been brave enough to offer a kiss or hug now and then to a few of them.
I ask how they are feeling, I ask after their day. I listen to their comments and complaints. I compliment their clothing or their new hairdo.
Sometimes they will ask me for more juice, or a bit more food. Sometimes they will ask for, or I will suggest, a PBJ or toasted cheese sandwich if they do not like the day's food offerings.
I offer to help a resident cut up the chicken into easy bite size peaces. Sometimes the resident will refuse. I respect their refusal but quality by saying, "I used to be a waiter, you know!" Often she will relent and push the plate toward me for cutting.
Sometimes I will let a CNA know that "so and so" hasn't eaten any of her meal or "so and so" is so sleepy that she is nodding off into her mashed potatoes.
Sometimes a residents feel frightened or confused and I can help calm them, sometimes if only for the moment with their returning to the same fears moments later. But at least for the moment of our interaction, they felt peace.
Sometimes they mumble or gesture and I behave as though I know what they are saying with a nondescript: "Uh huh" or "I see!" or "I know what you mean." If they are mumbling with a happy face I know that I should enjoy with them. If they are mumbling with an unhappy face, I know I should empathize or comfort them.
Often I will lie. Lie to a resident about when their son is coming to visit, how they can get home before dinner, if their husband is still at work, if they can go down to buy a new pair of shoes.
I have found that the "lying" comes fairly easily if I have no expectations of solving a problem or understanding what the problem is. Also my background in writing "Creative Non-Fiction" helps me weave stories for the resident that meets their needs, even if incorrect or a lie.
Notice that I have used the words OFTEN and SOMETIMES a lot. This reflects that day by day, hour by hour, sometimes moment by moment perceptions; needs, moods etc are in a constant state of change for many residents. For some residents, they are not at all present but still will respond to a touch, or a song, or the taste of food on their lips.
I get great joy in my role of Good Will Ambassador and feel that this should be a role on the unit. One person could be available just to chat, interact, smile, tap, shake a hand, tell a story, listen to a story. Wouldn't that be lovely?
Discrimination Two Ways
Through my friend Kate's blog http://kateswaffer.com, I discovered the Dementia Alliance International website. Good idea and I believe that it is so important for people with Dementia to have a place to go for support and advocacy.
From Kate's readings, I have come to understand that too soon and sometimes inappropriately, people with Dementia loose their rights as others make decisions for and about them. This includes not only families but also government, hospitals, organizations, conferences, workshops, and other educational experiences which pro-port to support them.
I have had to make Gregory's decisions for a number of years now and it is a very difficult thing to do. He and I have discussed many of the issues while he was still able and I use those as a baseline for decisions I now have to make on his behalf.
At a certain point, the ability to make decisions for oneself must be turned over to a person who will make them for you, hopefully with love, respect, understanding, compassion, etc. If a person is not there for you, health management advocates are available. While the later might not know the person the advocate for, the are bound by fiduciary responsibility.
Never-the-less, this turning point of decision making, balances on a fine line between the "Ws:" when, why, and how, where, and under what circumstances. Questions raise to the top in my mind: When is the right time? Can we do this jointly? What if you protest? Am I sure it is for the best? Does it really matter? etc Can I decide for now but then give it back to you to decide if able? What is the best way to go about this? How will I decide?
I do have one problem with DAI, however. Members can only be people diagnosed with Dementia. I feel like the tables are turned and I am the being discriminated against. I believe that I am one of the "good guys." Don't lock me out! Honestly, I feel resentful.
There is another wave of attention towards women with dementia and women care givers. Even though the prevalence of women needing this support exists at a higher level for women than it does for men, again I feel left out, ignored, and resentful.
So I will advocate for Dementia/ Alzheimer's where ever and when ever I can but still am uncomfortable with this male/ female discrimination. Honestly while I have expressed my feelings on these issues, I do know know for sure if I am on target or have all the intellectual date to support my feelings.
Dementia Alliance International is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Dementia Alliance International is a US Corporation with 501(c)(3) status which means donations by US citizens are tax deductible.
http://www.dementiaallianceinternational.org
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