Continued Growth in Understanding Dementia / Alzheimer's and Supporting Those Who Live With It

My comments to Kate after watching her presentation on Dementia in Singapore. 

CLICK HERE TO SEE THE 60 MINUTE PRESENTATION

(opens in a new window)

Kate,

Just finished watching your Singapore presentation. Magnificent!

Not to ride on your coat tails but in so many ways I feel that we are telling the same story, you from the point of view of one diagnosed with dementia and me from the point of view of loving the person who received the diagnosis. In some ways might I be so bold as to say WE ARE THE YING AND YANG OF DEMENTIA CARE? KINDRED SPIRITS?

In your presentation you talked about so many of the ways that I was able to intuitively support Gregory. 

In some ways I believe that your “attitude” towards the necessary “care giver” better called “care partner” have changed. Also, you have begun to refer to some of the serious changes that occur towards later stage Dementia and allude to how “care” at those later stages can change so dramatically and often times, become necessary even at the risk of loss of autonomy for the person diagnosed.

Since each person is a unique individual; anything we think, say, or propose about supporting those with the diagnosis and those loving those with the diagnosis is almost like a “shot in the dark.”

"A shot in the dark" especially since the day to day expression of the disease can change so dramatically and sometimes so quickly: Sometimes here, sometimes diminished, sometimes returned as of old, sometimes returned but somewhat weaker, eventually gone forever.

Sometimes the interactions are so convoluted that the care partner not only is at a loss to interpret what is going on but also how to interact with and deal with the experience. 

Sometimes the slow "loss" of the person you love so much is life changing and at times disabling to the care giver when no one and nothing can really "help" except maybe faith that things will be better in the morning. 

Sometimes the day to day, minute to minute energy that the care partner must give to supporting and monitoring the person with Dementia is exhausting and affects the carer's health, making the giving even more difficult.

There is NO one right answer and most often people are looking for that ONE “silver bullet, correct” answer. There is the obvious list of how to go about the care partnering (love, respect, understanding, compassion,etc) but no details donot automatically fill in. 

One of my new quotes might be "As in life, as in Dementia … just a little more complicated.” In some ways the Dementia is not the problem, living a good life no matter what shows up is the problem!

The trajectory and progression of Dementia complicates matters more, leaving us feeling so helpless. Since it is a disease that affects the brain; logic, understanding, thinking, processing, cognition, etc --  it complicates things even more -- let alone the effects of the physical, physiological,  and emotional for everyone involved.

The work of changing the world's attitude towards Dementia and how we support those with Dementia is in some ways just beginning and feels almost impossible.

Going from seeing the person and not just the disease, going from care communities to community caring, providing support and techniques to care giving partners, seeing the disease as a diability and providing support to live as well as possible, providing emotional support to all parties affected, educating medical practitioners, etc will get better and will take time ... we just want it now!

Kate, I so look forward to spending some time with you in Chicago. I have so much to learn from you and still have so many questions or maybe just a good hug and sitting together quietly over a glass of wine will be enough! Be well,

Michael

P.S.

Most of what I was able to do for Gregory came directly from my love for him, our respect for each other, the humanity in both of us. People often said I did such an amazing job of being his care partner and my reply is always, “How could I have done any differently? 

For me, what I did is also touched on by the Buddhist principals of The Four Nobel Truths and the Eightfold Path. Spirituality of any type helps us cope. Faith in something helps as well. For Gregory it was not his Catholism and for me not my Judiasm but for both of us Buddhism did provide some peace of mind!

    THE BUDDHA'S FOUR TRUTHS:

• The truth of suffering (Dukkha)
• The truth of the origin of suffering (Samudāya)
• The truth of the cessation of suffering (Nirodha)
• The truth of the path to the cessation of suffering (Magga)

THE BUDDHA'S EIGHTFOLD PATH:

1. The Right View

By right view, Buddha means seeing things in the right perspective. Seeing things as they really are, without any false illusions or pretenses. He wanted his followers to see and to understand the transient nature of worldly ideas and possessions and to understand that they can attain salvation only if they practiced the right karma.

2. The Right Thought

Buddha says that we are what we are because of what we think. What goes on inside our minds (our thought process) determines our course of action. It is, therefore, necessary to follow the path of Right thought or Right Intention. To have the Right Intention or the Right Thought, a person should be aware of his purpose or role in life and is studying the teachings of Buddha.

3. The Right Speech

Buddha asks his followers to speak truth, to avoid slander and malicious gossip and to refrain from abusive language. Harsh words that can cause distress or offend others should also be avoided while also staying clear of mindless idle chatter which lacks any depth.

4. The Right Action

Behaving peacefully and harmoniously; Right action, according to Buddha, lies in adherence to the following guidelines:

- Staying in harmony with fellow human beings
- Behaving peacefully
- Not stealing
- Not killing anyone
- Avoiding overindulgence in sensual pleasure
- Abstaining from sexual misconduct
- Not indulging in fraudulent practices, deceitfulness and robbery

5. The Right Livelihood

By laying down this guideline, Buddha advises his followers to earn their bread and butter righteously, without resorting to illegal and nefarious activities. He does not expect his followers to exploit other human beings or animals or to trade in weapons or intoxicants.

6. The Right Effort

Buddha believed that human nature imposes undue restrictions on the mind at times, causing a person to harbor ill thoughts. So we have to train our mind to think in the right direction if we wish to become better human beings. Once we gain control over our thoughts and replace the unpleasant ones with positive ones, we shall be moving in the right direction.

7. The Right Mindfulness

The Right Mindfulness, together with the Right Concentration, forms the basis of Buddhist meditation. By proposing this, Buddha suggests his followers to focus mentally on their emotions, mental faculties, and capabilities while staying away from worldly desires and other distractions.

It refers to the ability of the mind to see things as they are without being led astray by greed, avarice, anger and ignorance.

8. The Right Concentration

This eighth principle laid down by Buddha is fundamental for proper meditation. Zazen (or, Zen meditation) is the way used in Zen to reach the right concentration or "state of mind". Needless to add, this is the most vital of all the aspects stated in the Noble Eightfold path since, without proper meditation, an individual cannot move on to a higher level of well-being.

On FInding God: The Quinternity

On Finding God

December 2, 2009

“One of the main functions of formalized religion is to protect people against a direct experience of God.” 

C.G. Jung

The Past

I have always, until recently, avoided following a given religion or believing in God. I was raised Jewish, was Bar Mitzvahed, and certainly enjoy the traditions, stories, and foods of the Jewish Holidays. 

Judaism, however, based on what might be my limited study has never given me a feeling of peace or an understanding of why life unfolds as it does. It has not given me a “personal GOD” or a “direct experience with GOD.” It certainly has provided me with “questions” but certainly not the “answers” I am looking for.

I have some knowledge of the great religions of the world and not one feels any closer to meeting my needs, although I do appreciate the traditions, stories, and foods of many of those holidays as well. 

I have always said that I have Faith, but am not sure of Faith in what. I have always admired and envied people who could feel a personal GOD (recently I have been searching,) who could Believe (but in what,) who could find solace in Prayers (I don’t.) I have always described myself as a Spiritual Person not a Religious Person and while this has given me a way of explaining myself and my moral behavior, it hasn’t given me much Peace of Mind.

Being Gay doesn’t help. How can one believe in a religion which professes that we “Love Thy Neighbor” and then denies my love. How can any religion say they are all accepting and then not accept my life as I have inherited it and/or chosen it? How can any religion say I am OK as I am, as long as I do not practice who I am? But that is a topic for future discussion!

The Quest

Recently I have been studying this GOD conundrum. With my current, difficult life situation acting as a catalyst in my “Search for God,” I have sought a way to find peace, contentment, guidance, and quite honestly just a way to get outside of myself, my fears, my sadness, and my pain. I cannot imagine seeking drugs or alcohol to do so and have never been a person who buries his head in the sand or enjoys denial. So where do I go? Where do I turn?

In my recent studies, I have read the “Bible” (Old and New Testament,) “How to Practice The Way to a Meaningful Life” by the Dalai Lama, “The Four Agreements” by Don Miguel Ruiz, “There is a Spiritual Solution to Every Problem” by Wayne Dyer, “The Evolution of God” by Robert Wright, among others. I have had deep conversations with my Jungian therapist/psychologist Dr. Peter Demuth. I have drifted off to sleep thinking about my dilemma, my search. I have talked with friends. I have become more aware of similar “searches” in the fiction reading I have done and in the movies I have watched.

While my studies have not yet given me the Peace I am looking for, I believe I am getting closer. I think I have been able to condense what I have gained from all of these studies combined with my life experiences and have begun to see a common thread. I suspect that all of them have assisted me in being closer to obtaining Peace and eventually I will be able to say:

“I HAVE FOUND GOD!”

The Present

A breakthrough came when I entertained the possibility that there could be a SPIRITUAL GOD. Until now I have thought only of GOD in terms of the various formal religions and couldn’t find a fit for myself with this RELIGIOUS GOD. I therefore dismissed any GOD. But perhaps there is, instead, a SPIRITUAL GOD. And perhaps I have found him, or her, or that greater entity!

Even with this new awareness of the possibility of a SPIRITUAL GOD, but based on past history, I must work on not visualizing a white bearded old man who is benevolent or judging or punishing. I try not to visualize a young, good looking teacher with golden flowing hair. Or a Buddha? Or Allah? I must still work at not assuming the word GOD belongs to any particular formal religion. I continue to work at not accepting the Bible as GOD’s law, cannot accept words like Sin or Evil or Ten Commandments (in principal yes but not having been handed down on clay tablets,) and certainly cannot understand killing others in the name of GOD.

On the RELIGIOUS GOD’s side, formal religions vary. Catholicism has the Trinity: Father, Son, Holy Spirit (formerly The Holy Ghost.) Hinduism has the Brahman and his many representations in the form of deities. Islam and Judiasm have One God. Buddhism does not deny the existence of god but rejects subservience to any kind to a supreme God. 

Prayer to the RELIGIOUS GOD, for most people, seems to consist of begging or bargaining or pleading and reciting rote materials which look for, praise, or give thanks for an external existence and/or intervention. While praying at home is acceptable, going to a house of worship where one can “talk” with GOD, seems to get greater results and in some religions, the only place to get results.

NOW FOR THE EPIPHANY. “I’ll take curtain number 3 please”

epiphany |iˈpifənē|

noun ( pl. -nies) (also Epiphany)

the manifestation of Christ to the Gentiles as represented by the Magi (Matthew 2:1–12).

1) the festival commemorating this on January 6.

2) a manifestation of a divine or supernatural being.

3)  a moment of sudden revelation or insight.

On the SPIRITUAL GOD’s side, I have found GOD to be a personal ... STATE OF MIND ... not an external entity. With a SPIRITUAL GOD, I have discovered that instead of a Trinity, or a “One God,” and closer to Buddhism’s lack of a Supreme God, for me a Quinternity exists. The QUINTERNITY of GOD as a STATE OF MIND includes: 1) Truth 2) Love, 3) Forgiveness, 4) Peace, and 5) Faith.

The five parts of the QUINTERNITY are related to and build on each other. This QUINTERNITY exists internally, has to do with how I think, and is part of my moral behavior. It does not exist externally, outside of me in a god, a heaven (and certainly not in Hell.) 

Also I have found SPIRITUAL PRAYER to be a STATE OF MIND that exists internally and reflects my understanding of the five parts of the Quinternity which are the basic principals which guide my life, my thoughts, my actions. Spiritual Prayer consists of meditating on these principals, drawing on them when needed, and in making them part of my daily life. I call this mediation THE GOD TEST of a situation.

The QUINTERNITY of the SPIRITUAL GOD as a STATE OF MIND

TRUTH: Behind every situation (action, event, thought, feeling, illness, response, etc) there is a Truth as to why it is happening or why it has happened. I believe that when one looks for, is aware of, and understands the “Truth in It,” one is better able to accept and deal positively with any situation. I also believe that merely by being aware that a Truth exists, even thought one may not understand the Truth itself (or that a particular Truth has been lost forever but at one time did exist,) one is better able to accept and deal positively with the situation. To me, GOD is the STATE OF MIND behind looking for the Truth in each situation.

LOVE: When you deal with each situation and approach every aspect of your life with Love for others and Love for yourself, you are acknowledging that we all come from and are part of the same Source. We all share similar experiences with differing levels of understanding of the Truth behind those experiences but in one way or another, we all share being alive. To me, GOD is the STATE OF MIND behind Love of self and others.

FORGIVENESS: When you acknowledge that everyone is somewhere along the continuum of awareness and understanding of Truth and Love; you realize that differences, conflicts, and negativity will arise. Forgiveness of others is the ability to realize that these differences, conflicts, and negativity are not personally directed at you and are not indicative of a failure on the part of others. Forgiveness of self is the ability to realize that these differences, conflicts, and negativity should not be blamed on others and are not indicative of a failure on your part. Forgiveness is the ability to move on. Forgiveness allows you to hold on to Truth and Love. To me, GOD is the STATE OF MIND behind Forgiveness of self and others.

PEACE: By always looking for the Truth behind the seemingly uncomfortable and difficult day to day occurrences in your life, by affirming with gratitude the Truth behind the seemingly pleasant and easy day to day occurrences in your life, and by doing so with Love and Forgiveness, conflict and negativity will be minimal or nonexistent. The feeling that comes with this state of being I call Peace. To me, GOD is the STATE OF MIND behind being at Peace.

FAITH: Having Faith allows you to hold on to the understanding that as life unfolds, through its joys and sorrows: (1) Truth exits even if it is not visible, (2) Love allows you to show respect and understanding for yourself and others, (3) Forgiveness allows each of us to be at our unique place on the continuum of Truth, Love, and Forgiveness, (4) Peace will be yours with these realizations, and (5) Faith will help you hold on to these understandings and help you live your life in a way that will allow you to find a Spiritual GOD, your personal GOD, the GOD within you, the GOD who is you, and to have a direct experience with GOD.

Faith

I have often said that Faith is very important to me. I admire the steadfast faith of little old Mexican ladies praying in church. I have Faith, I am just not sure in what. Recently I read a quote from Roger Ebert, who died just recently. "Faith is neutral. All depends on what is believed in." While this gives me more to think about, it also seems to answer my question.

GOD

I am writing this about GOD, with ironic or flippant intent, may he/she not strike me down.

If you have read some of my previous work, you will know that while I consider myself a spiritual person, I do not consider myself a religious person and am not so sure I believe in a God. I have read, studied, discussed and continue my "search for God." The first breakthrough was when I realized  that there could be a "spiritual god", up until then only thinking in terms of a "religious god." But that is a different story.

Last week, a number of God related items cropped up AUTOMATICALLY and I ammusedly thought, "Wow, that must mean that there is a God." Here comes the tongue in cheek part.

PROOF THAT GOD EXISTS:

How come when you come across something amazing, you utter, "Oh my God!"

A popular internet response is often, "OMG!"

When you hurt yourself you scream, "God, that hurts!"

When you get angry you vent, "God damn it!"

When you see something troubling you worry, "Dear God!"

When you think of something that you hope will never happen you set up, "God forbid."

When someone sneezes you offer, "God bless you."

When you are worried or facing an extreme difficulty you pray, "God help me!"

All these utterances seem to come automatically and naturally, whether you believe in God or not.

As my therapist likes to say, "Whether you believe in God or not, God believes in you."

Often I will find some writing that speaks to me but tends towards the religious thereby turning me off. Unity's Daily Word, while using the concepts of Christ and God, as a positive based religion seems to come closest to sitting well with me. What I like to do is cross out the religious overtones, sometimes add a word or two, and see if the writing still makes sense. Here is an example:

Tuesday, July 26, 2011 FAITH I respond to life's circumstances according to my faith in myself. Every circumstance is temporary. If I am struggling, I respond to the challenge according to my faith in myself. I turn within for direction and gently release thoughts of lack, limitation or unworthiness. Gratefully I acknowledge that in every moment I am divinely supported by friends, family, and my knowledge of right and wrong. I am a powerful co-creator. In prayer meditation, I connect with the Christ within, knowing that I am being guided toward can reach my highest expression. I have faith that on this journey of becoming the best me I can be, all things are possible. I listen to the wisdom within and know that according to my faith in myself, I make choices that are right for me. I have faith that all is well as I live, move and have my being enfolded in God's goodness knowing right and wrong. Now faith is the assurance of things hoped for, the conviction of things not seen.--Hebrews 11:1