Nov 30, 2010

Reflection

"Advent is that sacred season of anticipation and expectation in which we come to terms with the deepest yearning of our soul," Magnificat.

We are entering a season in which several major religions have holy celebrations. Christians have entered the time called Advent, and I want to draw upon its idea of preparation and anticipation. It helps me to demarcate my life by timelines that bring me meaning. So, for December I want to use the subject of Advent to consider within the caregiver's context. For what greater good could we prepare? How can I distance myself from the many, many obligations to see the direction of my own life? A good time for reflection, as the daylight grows shorter up to Winter Soltice in the northern hemisphere.

Nov 29, 2010

Changes

"A miracle is something inside you, a change in the way you think or feel," Marianne Williamson.

A different way to think of miracles, and in keeping with the idea that our world is a reflection of how we think. In what way can we create a miracle in ourselves as caregivers? What is your prominent feeling most of the day? I sometimes notice how I am feeling off and on during the day. It gives me a good idea of my state of mind. If it isn't what I want it to be, I change it.

Nov 28, 2010

Well being

"All is well in my world," Louise Hay.

I'm taking time again to notice what is going very well in my world. Due to inclement weather forecast, we have moved earlier out of the high country to lower elevation. Back to the lovely house in which we take winter respite. I am so grateful for this chance to be out of the snow country. And, after several weeks of significant decline noticed in Dwane, yesterday he seemed more like himself. We had a gentle day together, and I am grateful for that as well.

For his well being and mine, I believe it is so important to dwell on what is going right.

Nov 27, 2010

Quiet time

Time to regroup after having house guests and being with family. Family members noted the decline in Dwane and expressed concern. I have felt too overwhelmed this fall, and I intend to spend the next week reflecting on our life and how I can create a plan to make things go more smoothly. It is time to again consider our options, the best plans of action.

Nov 25, 2010

Thanksgiving

"If the only prayer you ever say in your whole life is 'thank you' that would suffice," Meister Eckhart.

For everything, every experience today I give thanks.

Nov 24, 2010

Communication help

"We find that if caregivers aren't stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good." Michelle S. Bourgeois, speech-pathology professor at Ohio State.

Using pictures with captions, Bourgeois is asking dementia patients about the quality of their life, and the above is her finding. So, how do we as caregivers remain unstressed and unhurried? Her tips on communication can help. Memory flashcards for whatever areas are causing difficulty. Such as, she suggests making a card that says, "Showers make me feel fresh and clean," as a helpful technique if the person you are providing care for refuses to shower.

I can think of countless ways to implement her communication suggestions and make our lives easier, smoother and happier. What are some ways you can think of using written cues to help with memory, anxiety or anger?

Nov 23, 2010

Dissenting opinion

I want to acknowledge a dissenting opinion from "Dave" who relates that he feels I did not apply Joseph Campbell's quotation on 11/21/10 correctly. The comment got deleted, so I just wanted to post his view. Readers who are interested in the inquiry can study the publications of Joseph Campbell to determine their own view. My blog entry was an intent to honor the wisdom of Joseph Campbell, while also considering how we can find more meaning in the role of caregiver.

Family

"Forgive others and forgive yourself. You have that power." W. Frederic Keeler.

This week in the U.S. Thanksgiving is celebrated. It is by tradition a time to be with family. A good time to consider forgiving oneself and others. I have heard people say that sainthood is more easily attained when one has family with whom to interact. Like most jokes, there is truth to the comment. So, for this week we might choose to focus on forgiveness of self and others and gratitude. We have so much to be grateful for in our lives. Nature in all her forms, friends and family who love us, being alive, new experiences, new things to learn. What are some of the things about which you are grateful today?

Nov 21, 2010

Communication tip

"Spoken words literally go through one ear and out the other. Patients understand, but they can't store the memory. That is why they ask the same question over and over." Michelle S. Bourgeois, speech-pathology professor at Ohio State University.

Bourgeois has an excellent suggestion for the extreme difficulty in communicating with someone with dementia. She suggests that we write down the information. She suggests that people with dementia retain reading skills, and that they will be comforted by having information written rather than told -- or in addition to being told. I have done that with directions and lists of information, but it did not occur to me to do it with everyday communication. She gives an example of a person with dementia asking over and over where they are going. She suggests that we write on a piece of paper the information for the person, and they may very well ask less often. Great ideas in her article in the November 21, 2010, Parade Magazine.

Meaning of hero's journey

“Where we had thought to travel outward, we shall come to the center of our own existence; where we thought to be alone, we shall be with all the world,” Joseph Campbell.

The above quote succinctly describes the hero's journey. We go from a selfish perspective to a worldly one, one in which we know our interconnectedness with all others. We have no choice in whether we will do this journey called life; all we can choose is how we will do our journey. Why don't we make the most of it by exploring the possibilities of the hero's journey? How are the one to whom I provide care and I connected? What is the meaning of this part of life's journey for me?

Nov 20, 2010

Self forgiveness

"Forgive others and forgive yourself. You have that power." W. Frederic Keeler.

A significant part of the hero's journey can be self forgiveness. As one takes the journey and encounters the trials, one is recognizing and accepting parts of oneself. Take Dorothy in Wizard of Oz, when she finally gets to meet with the Oz she discovers he is all smoke and mirrors, and that the real answers lie within herself. So, too, in the hero's journey. It seems we need to recognize that the characteristics in others that we find the most contemptible or fear the most, are the very ones we need to recognize in ourselves. If we ahve the most contempt for a murderer, it is not that we need to have murdered ourselves --- it is that we have with thoughtlessness or perhaps intent inflicted harm on someone else's spirit at some time. Or it can be that we merely recognize that given the right upbringing, with the right combinations of traumas, the murderer could be me. This seems to be an important part of the hero's journey, and it applies to caregiving. What characteristics are emerging in caregiving which you may have some trouble accepting? That is an area of growth for oneself.

Nov 19, 2010

Self care

"Failure is never quite as frightening as regret," character in movie, The Dish, enjoyable true story about a satellite dish in Australia covering the 1969 moon landing.

The most current Mayo Alzheimer's Caregiver's Newsletter discusses how important it is for self care for the caregiver. It cites a person who devotes time to yoga, etc. as a way to cope with her husband's diagnosis and the care required for that. I agree that self care is vitally important. It is just not as easy as one might think, as it is dependent upon finances, family and friend support and involvement, circumstances of the dementia. It is vitally important that we find ways to meet our own needs, or resentment of the caregiving is a likely result. One of my favorite current ways is that I exercise at the Physical Therapy facility when I take Dwane for his time there. That may be something available in your area.

Nov 17, 2010

Research needed

By SANDRA DAY O’CONNOR, STANLEY PRUSINER and KEN DYCHTWALD
Published: October 27, 2010- New York Times Opinion Page
"OUR government is ignoring what is likely to become the single greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal. It attacks rich and poor, white-collar and blue, and women and men, without regard to party. A degenerative disease, it steadily robs its victims of memory, judgment and dignity, leaves them unable to care for themselves and destroys their brain and their identity — often depleting their caregivers and families both emotionally and financially.

As things stand today, for each penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with the condition. This explains why the financial cost of not conducting adequate research is so high. The United States spends $172 billion a year to care for people with Alzheimer’s. By 2020 the cumulative price tag, in current dollars, will be $2 trillion, and by 2050, $20 trillion."

There is more to this important article which you may access via NY Times, Oct. 27, 2010.

Travel guide

"At the end of every road you meet yourself," S. N. Behrman.

There is a joke about the difference between the genders and who will stop and ask for directions when lost. I love travel guides, and if that is not sufficient, I am the first to stop and ask for assistance. What assistance is there available for our journeys as caregivers? There are newsletters, such as the one from Mayo Clinic. My intention with this blog is to provide reliable information and support. Of one thing we can be certain: we are each taking a journey in this life, and caregiving is a part of it for many - - - we can either take the trip with wisdom, drawing from the best sources of information and support we can find, or we can travel blindly, without seeking directions. What is our conscious choice?

Nov 16, 2010

Journey as growth

"It is said that when any one person overcomes a block toward growth, the consciousness of the Whole is uplifted," Dr. Joan Borysenko.

So, if the hero's adventure is about interior growth, how might that apply to caregiving? It has seemed that the interior journey involves recognizing, accepting and integrating all those aspects of ourselves that we would rather not own -- what we consider to be the very good and the very bad. What might be called upon to recognize, accept and integrate in the act of caregiving? It seems that impatience/patience might be one. Administering to another versus self care another. Isolation and lack of support. Resentment. All of these might be things to look at and consider. It has seemed to me that one needs to address the negative aspects before the more positive ones are accessible.

Nov 15, 2010

Interior work

"We shall not cease from exploration, And the end of all our exploring will be to arrive where we started and know the place for the first time," T. S. Eliot.

It seems appropriate to better describe the interior journey that is reflective of the hero's journey. Worldwide myths and folktales depict the myth, and so do some modern ones. We watched a bit of one of the Harry Potter films last night. J. K. Rowling seemed to incorporate the interior journey in her marvelous tale. Harry emerges from a dark space (under the staircase) to be guided by a wise person. He faces trials, which cause him to mature as an individual, so that he is able to develop the potential within him. Jungian psychology points to the idea that all the trials we meet help us to recognize and integrate various underdeveloped parts of ourselves. Perhaps the silly, time-driven White Rabbit in Alice in Wonderland, or the much more dangerous-appearing Queen of Hearts. All are aspects of oneself, that - upon integrating - serve our journey.

Nov 14, 2010

Thoughts of the journey

"Thought is the real causative force in life, and there is no other." Emmet Fox.

If the above quote is true, how does it apply to the hero's journey? It seems it is so easy in human form to be "lost in thought". Literally. One can take the hero's journey of self discovery, in my opinion, only if one has the courage to disentangle oneself from the entanglement of thought, and use thought instead on the path of self discovery. How is this done? By being aware of our thoughts, by being willing to look at the content of our thoughts, and by choosing thoughts that support the quality of life we want.

Nov 13, 2010

Great men and women

"The great men and women of all time have been gentle, gracious, and loving, though commanding persons," James E. Dodds.

So, in considering caregiving as a hero's (gender-neutral) journey, the qualities of gentle, gracious, loving - and also commanding seems apt. The commanding can mean taking a stand with the person with the terminal illness on issues affecting their own or our well being, but it also applies to advocating for their good treatment outside the home. One of the persons at P.T. (physical therapy) speaks in a very loud voice to Dwane. He is not deaf. I have seen people do that before with a person with disabilities. I choose not to correct the person, but to model appropriate behavior.

It seems that the hero's journey is being called upon more here because in the last 3-4 weeks we have been experiencing a significant decline in functioning. These downward slides into a new "norm" of functioning are hard for me, and they represent an opportunity for me to take extra care and gentleness with myself.

Nov 12, 2010

Volunteers wanted

"Waging War on Alzheimer's," Prevention Magazine December 2010, page 18.

During the summer I wrote of the new research findings in dementia, specifically Alzheimer's; that instead of the plaque in the brain being the problem that causes dementia, new thinking is the plaque is the body's way to try to protect against the damage that beta-amyloid (a protein that clumps in the brain) does. This research is under the leadership of Dr. Paul Greengard of Rockefeller University. Now Dr. Greengard's team has identified the specific enzyme (named GASP) that triggers the overproduction of protein.

Prevention Magazine says that volunteers are needed to test new drugs which will target this enzyme. If interested, one may volunteer by going to alz.org/trialmatch
This is a link from the non-profit Alzheimer's Association. Together we may find new ways to help end dementia.

Nov 11, 2010

Warrior heroes

"They also serve who only stand and wait." Milton.

Today in the U.S. it is Veteran's Day, a day set aside to be grateful to those who have served our country and helped to create freedom for us all. As Milton says, those who stand and wait, the families of the Veteran's, also serve. I think anyone who stands for freedom, equity and good treatment of us all serves the greater good. It doesn't matter if it takes the form of Ghandi's position on freedom or that of Joan of Arc. Freedom is served when we all expect it for us all.

In caregiving, freedom - within what is safe - also serves. That is why we strive to set up an environment that supports Dwane's freedom. Schedules, lists, written directions for things: all are ways to support the freedom of those for whom we provide care.

Nov 10, 2010

Everyday life

"The great mystics like Jesus have taught that as we enter into the One, the One enters into us and becomes us and is us," Science of Mind, p. 343.

The heroic journey shows up quietly in everyday life, in the parent who foregoes career advancement to raise children, in the parent who goes off to work every day to provide for the family, in those people who are being good neighbors to others. I had a thought yesterday: what if the heroic journey is not just one the caregiver takes, but also the care receiver? What if during those periods of less lucidity the person with dementia is abiding with angels, preparing his/her way into the time after this life? Interesting thought.

Nov 9, 2010

Hero as myth

"The hero's epic journey to the center of the self beckons to everyone, though of course it can be ignored or postponed." Dr. Jesse Jennings.

The myths from around the world support this epic journey as a common experience in our human experience. It begins with a call, which we may have tried to ignore, to change, to view things differently from before. Those who take the journey finally say yes, meet at least one mentoring presence to help with guidance, enter into the unknown, face trials and learn the power of love.

Why would we even consider this topic as caregivers? Partly because it is a universal journey, and if not now, when? And for me partly because I need something else to look forward to, to engage my intelligence, besides the daily tasks. And for me partly because as this disease causes us to be more isolated, this is an activity I can do anywhere. I also believe that all of human kind benefits when even one person has the courage to undertake the hero's journey.

Nov 8, 2010

Ego

"On the journey to the center of the self, gradually all opposites are reconciled into an overarching unity - - - Most usefully, for purposes of effective living in the world, balanced in due proportion are the soul's humility and the ego's self-esteem." Dr. Jesse Jennings.

It has seemed to me that the best way to know if someone is a mature individual is when there are not extreme opposites in judgment, living, self-centeredness versus others. One might think that in caregiving we have died to self to care for someone else, but that is not necessarily true. Why are we caregiving? It could be to stroke our ego, to look good for the community. It could be based on resentment that we believe we have no other choice.

Today, as part of our hero's journey, let us look honestly at why we are caregiving and what all of our options are.

Nov 7, 2010

The Tea Party

"Anyone unable to understand a god sees it as a devil," Joseph Campbell.

Continuing on the hero's journey as seen from the caregiver's position, it is helpful for me sometimes to consider that I am at the Mad Hatter's Tea Party. It helps me to not take too seriously the miscommunications, the mishaps, the misadvenures. Just as Alice met very strange creatures, the talking White Rabbit with the watch, the Queen of Hearts who ordered 'off with her head', the Cheshire Cat, Mad Hatter, mushrooms that could cause one to shrink and grow, etc., so we can consider that the misadventures that can accompany providing care for someone with dementia as vehicles for our own personal growth.

Once we have chosen to see these things as opportunities rather than obstacles, we are often offered help in surprising ways.

Nov 6, 2010

The unknown

"In the middle of difficulty lies opportunity," Albert Einstein.

So, in the hero's journey one has had the courage to follow the guidance to wisdom, and met some mentoring presence. Now the journey seems to call for a going into the nether world or the unknown. Think again of how Alice fell down into the earth in Alice in Wonderland and how she met many strange creatures after that. Psychologists tend to believe that these strange creatures one meets on the hero's journey are projections of oneself that need healed or integrated. This is a journey into our interior and an integration of our projected or neglected parts.

Many opportunities can be brought up in caregiving which help us to see how we can integrate more fully the human aspects we have neglected.

Nov 5, 2010

Leap of faith

"Do not require a description of the countries towards which you sail. The description does not describe them to you, and tomorrow you arrive there and know them by inhabiting them," Emerson.

To leave what is comfortable in one's personality and choose to change requires if not a leap of faith, at least a step of faith --- into the unknown. As humans we seem hardwired to fear what we do not know, until we consciously choose to not be fearful. According to Jesse Jennings old world maps depicted the areas that had not been explored with dragons, as if to say if one dares to venture there, you will encounter danger. That is reflective of how our psyche views unfamiliar things, attitudes, behaviors, ideas. So, to continue on our hero's journey, we must cross the threshold into the unknown. There will be mentors to assist us at least periodically, but most of all we must trust our own intuition. To change requires leaving the familiar behind.

What new way could we be, perhaps just attitudinally, in your caregiving?

Nov 4, 2010

The Mentor

"I want to know and know I know," The Voice Celestial.

Once we overcome our reluctance to change and begin our journey, a mentor in some form appears. This mentor can come in many forms, consider the White Rabbit in Alice in Wonderland, and the role of the mentor is to guide gently without giving specific advice, so that the hero grows by his/her own efforts and choices. When we step into the unknown on faith, someone or something will be there to help us. I remember reading that Carl Jung felt he got some guidance from a scarab beetle that landed on his window. A current movie, The Karate Kid, displays a mentor who guides while allowing the hero to make some mistakes and find his own way. Let us look for the mentors in our lives to help us find the way on our journey of self discovery while providing care.

Nov 3, 2010

The Journey

"To meditate upon the presence of God is to indraw the Universe into one's own soul," Science of Mind, page 621.

The Hero's Journey is more an interior one than exterior, though it is depicted in the myths as exterior -- out of the cave, usually a wise mentor, slaying of dragons or other obstacles. It has been defined in various ways, but it occurs when we decide to know ourselves and the mysteries of the universe. If a person is turned off by the use of the word, God, it can be replaced by mystery of the universe. Sometimes we choose this interior journey, as apparently Buddha did; and sometimes it is thrust upon us as it is reported to have happened to Saul on his way to Damascus.

Being caregiver of someone is a similar opportunity. Whether we feel this was thrust upon us or we chose it, we can use it as a catalyst to better know ourselves and the universe of which we are a part.

Nov 2, 2010

Hero's journey

"Hero, which is gender-neutral, has Greek origin in Hera, wife of Zeus, in her role as protector." Jesse Jennings.

I am re-watching Joseph Campbell's Power of Myth videos. The hero's journey is a common myth, and one that I think both we, and the person for whom we provide care, can take. In this journey the person moves from birth to death, or spiritual unconsciousness to consciousness. The steps are universal, hence their existence in a myth. In the following days we will look at the components of a hero's journey as applied to living with a terminal illness.

Nov 1, 2010

November

"November is a month of finishing our business, squaring the inner and outer accounts that require our energy," Dr. Joan Borysenko.

It is amazing to me how quickly the time of daylight is shortening. November reminds me that we are into our third year of living with the diagnosis of Lewy Bodies Dementia. It was in October, 2008, that total replacement surgery catapulted us into the medical arena of neurologists and neuropsychologists. After a summer of improved functioning, we are now in a period of fairly marked decreased functioning, especially physically. Today we begin a new program of exercise, supervised by Physical Therapists, to help with mobility and balance.