Question for Readers

Drooling.  One of the most humiliating aspects of Lewy Bodies Dementia for Dwane is the excessive drooling.  We have asked physicians about it.  What we can do, can it be prevented, etc. to no avail.  So, I am asking the wise readers of this blog.  What do you do about the drooling?  The things we have tried:  antihistamine, but that makes him sleepy and he already has narcolepsy with which to contend/ waterproof pads on mattresses and pillows, but that does not stop him getting all wet at night/having him carry 2 handkerchiefs to use to wipe up the drool.  There must be something more helpful than any of these.  I would appreciate ideas from any of you.  You can either comment on this blog or email me at jklifecoach2@gmail.com   Thank you.

Human Need

"The greatest desire of a human being is to express who we are." Dr. Jim Lockard

One of the things we lose sight of as caregivers is who we are, what we might want, what we might like to do.  A caregiver whose husband had died said that was her biggest task:  rediscovering what she wants.  There are probably some people who are able, perhaps with sufficient financial and physical support, to not 'lose' themselves in the caregiving task.  But I think they must be rare.  My spiritual advisor yesterday reflected to me that - even with my professional mental health skill set, I was not able to prevent becoming overly entangled in the task of caregiving.  The needs are so many, the responsibilities so great -- how are we to manage them - without losing sight of who we are and what we might prefer doing?  I was not able to do it, and I personally have not seen anyone else do it well.  Someone I know who also provided caregiving said rather harshly to me that a person still has responsibilities for the care receiver, even if that person is in assisted living.  Of course.  But, it is vastly different.  I just had my first worry-free mini vacation in over 5 years.  I traveled to see our eldest grandson inducted into the National Honor Society.  It felt so strange not to have Dwane's safety and well being occupy a lot of my mental space --- because I knew he was safe.  And, as a dear reader pointed out to me, now I have the energy to advocate for him because I am not worn out by the tasks and responsibilities of daily caregiving.  A Mayo Clinic newsletter once said that most caregivers wait too long to place a person into assisted living.  I agree.  It is imprudent of us to let this disease of dementia take us too.

Silence

"The closest that we ever get to the Absolute is in silence, a silence free of all thought and self-reference.  Such a state must be cultivated over time through diligent spiritual practice."Dr. Jim Lockard

Back home in the high country my favorite time of day is early morning.  During my prayer time I can enjoy the towering pine and spruce trees out my window, and the total silence - broken only by the sound of birds singing, rejoicing in the spring season, and the tumbling of the creek; and sometimes the wind in the trees, making them dance like ballerinas.  Silence seems almost antithetical nowadays in our society, with our 24/7 connection to media.  But, I think, the only way we can attain our higher consciousness is through the practice of silence "free of all self-reference".  How many of our thoughts are free of self-reference?  Very few.  That is why it takes silence and the practice of being free of thought in order to cultivate our higher selves.  How do you find silence in your life?

Power vs Love

"The highest-ranking wolf in the pack isn't the one that uses brute force.  It's the one who can, and chooses not to." Jodi Piccoult

I am reading a book of fiction, Lone Wolf, by the above author.  A good author; she always researches her material and writes good fiction about something that is a social issue.  As I read this book, I am reminded of how much like wolves we humans can act.  I have had some recent experiences with women who miss-use power, and this quote helps me understand.  They miss-use power because, in truth, they are not very powerful.  Powerful people (and apparently, wolves) do not need to show they are powerful.  This is an important human observation.  People who throw their weight around, who want their way despite what someone else may request, who do not honor boundaries or requests:  these people are not truly powerful.  They are bullies.  To be truly powerful is to act from love, and love absolutely contraindicates the use of power.  There is no place for power plays when one is acting out of love, and there is no love where one is trying to wield power.  So, it is our choice, really.  Do we want to be bullies?  Or do we want to act from love?  And, do we want to allow bullying or do we insist on respectful loving treatment at all times?  I know which I choose.  Love.  That is the only acceptable way.

Positive Comments

"Little else you say can change so much in the life of another as words of praise, compliments, or encouragement." TUT, Note from the Universe www.tut.com

I once heard a speaker say that giving compliments was a way to distance yourself from people.  When he said it, I was intrigued.  Now, years later, I am still trying to decide if he was correct in what he said, as it has been a long practice of mine to provide positive feedback (praise, compliments and encouragement) to others.  So, this message from the Universe which arrived in my email box today is especially poignant for me.  A practice I developed in the 1970's from M. Scott Peck's book, The Road Less Traveled, was to say to people only what I truly believed was in their best interest to hear.  That eliminates a lot of talk, and it helps me be conscious that what I do say is helpful to the person who hears it, which includes myself.  So, that eliminates negativity, judgment, criticism, sarcasm (stopped that when I read it came from a root word meaning to 'tear flesh'), humor at anyone's expense, comments which limit myself or others.  This list is not inclusive of all the ways humans diminish one another verbally.  So, until proven wrong, I will continue the practice of speaking to others words of praise, compliments and encouragement -- truthfully.  I will also speak the hard truths when I believe that is necessary for the person's highest and best interest.  A fine discerning, which I think can come only from faithful spiritual practice.

Kindness

"If we are in a supermarket when someone drops a bag of groceries on the floor and we don't help that person pick things up, what difference does it make how deeply we know we're a being of God?" Lee Lozowick

Kindness involves a constant attitude.  It seems to me that people who are selectively kind (and we all know some people like that - may even have been ourselves at times) are kind to people from whom they get some payoff, but their unkindness occurs with family members - to whom they feel safe to let down their mask, and to service people -- the people at the cash register, waiters, etc.  It has seemed to me for a long time that kindness cannot be genuine unless it is practiced within one's own home.  Many, many years ago it occurred to me that I had an opportunity (and responsibility) to choose how I was going to affect the atmosphere in our home.  Cheerfulness, courtesy, fun, respect, careful and loving communication, doing my share of what it takes to keep a house going:  all of these are, in my opinion, acts of kindness.  Many years ago I was with a group going into a place to eat in the evening.  On the path going in, there was a broken beer bottle with the jagged edge up.  I stopped and - seeing no garbage can, moved the broken bottle against the building with the jagged edges down, so that no one could inadvertently step on it in the dark.  I thought nothing of the action, but someone in the group - noticing what I had done, commented that it was so like me.  I am not trying to make myself out to be a hero; it was something anyone would have done, but I do think it was reflective of my decision to practice 24/7 kindness.  What act of kindness have you done or received today?

thank you

Thank you readers and friends for your thoughtful and supportive comments about our decision and need for Dwane to move to assisted living.  I so appreciate your taking the time to comment, and I appreciate the support from others who actually understand the stress and role of caregiving.

Response to Change

"It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change." Charles Darwin

I am watching a dvd series of Dr. Wayne W. Dyer, Experiencing the Miraculous, in which he relates a story told to him by Dr. Victor Frankl --- a person I greatly admire.  The story is that as Dr. Frankl was acclimating to his incarceration in Auschwitz during WWII, he noticed that the people who complained about the conditions were the quickest to perish.  They were fed one dirty bowl of water a day with a fish head floating in it, and Dr. Frankl realized that if he did not find the beauty in that meal, he was more likely to perish and to not achieve the higher level of personal consciousness he desired. 

This story is applicable to us who are caregivers for someone with dementia.  Change is inevitable, and unlike some change we might experience, this change will be an erratic but steady downward spiral of functioning.  Whether we are caregiving 24/7 as I was, or having paid personnel in every day, or taking our loved one to adult day care, or visiting him or her in an assisted living or nursing home setting, there will be change for us.  It is imperative that we are responsive to these changes.  If not, the disease has a very good chance of taking us too.  We must find the beauty in this 'dirty bowl of water' the diagnosis of dementia brings to us who are caregivers.

Self Care

"Our most important focus during times of stress is taking care of ourselves. We are better able to cope with the most irregular circumstances; we are better able to be there for others if we're caring for ourselves. We can ask ourselves regularly: What do we need to do to take care of ourselves." Melody Beattie

I am not sure there is a time of no stress in caregiving; there are just times of less and/or more stress.  Self care must be a part of our regular routine.   Believe me, I know you are overstretched with time commitments and responsibilities, but it is imperative that you have a system of self care scheduled every day.  Each of us will be different, but for me the early hours of the morning are a daily self-care time for me.  That is the time for my journaling, reading inspirational books, prayer and meditation.  The end of the day is another time.  I put on a meditative cd to help me sleep and to feed my subconscious with positive and nurturing thoughts.  Daily exercise is part of my self care, and I was able to manage walks while I had the care receiver settled down with a book or tv.  Others things, like yoga and massage treatments, take more scheduling and happen only when that support service is in place.  What is self care for you, and how can you implement daily and other regular practices within your life and schedule as a caregiver?  Whether you provide 24/7 care, or you pay for services to come into your home, or adult day care, or assisted living:  you will still have stress and responsibilities, and self care is critical.

Disappearance of Person We Knew

"They just disappear right in front of you, it eats the soul before the body."  Scott Turow speaking about Alzheimer's Disease

Although the above quote is written in a piece of fiction, it does speak to what I have heard many family members say about dementia:  The person we once knew disappears before our eyes.  That is why this is such a long grieving process.  We grieve the loss of the personality of the person we love, and then we grieve the loss of the person's physical capabilities and presence.  We also grieve the loss of our own freedom.  People have termed it the 'long goodbye', and that is apt.  It could also be called the 'multitude of goodbyes'.  One thing I think that we as caregivers may want to recognize is that it also is a goodbye to the dreams we shared with this person.  For some of us, that may be the hardest thing to give up and the most important thing to grieve.  The loss of the hopes, the dreams, the plans.  Dwane and I were talking -- in our adjustment to his living now in assisted living, that we never did rent that pontoon so he could fish.  So, we will do that this summer.  Assisted living does not have to be all or nothing.  We can still accomplish some of the dreams and plans we have had.  But, the sad thing is, we will not be able to accomplish them all.

Grieving

"Bad times have a scientific value.  There are occasions a good learner would not miss." Ralph Waldo Emerson

I am surprised at the depth of my grief with Dwane moving into assisted living.  I have led workshops helping people deal with loss and grief, and I have applied the principles of dealing with grief in my own life in times of loss and sadness.  Still.  I am stunned by how much grief I have with this new level of this insidious disease.  Dwane is adjusting remarkably well, except for upset caused by some nonsupportive phone calls he received, which were so upsetting to him his blood pressure elevated.  I wish I could protect him from all unpleasant happenings, but we caregivers cannot; the unpleasantness seems often to come from sources one might least likely expect. 

He has always demonstrated the ability to grapple with an issue and acclimate to it.  I, on the other hand, am still choosing seclusion, having only safe conversations, missing him and grieving that life has brought us to this point.  I believe, as do many mental health practitioners, that the best way to deal with emotions is to honor them by feeling them and letting them move through our body/mind/soul.  And, I am doing that.  I am also looking for the 'scientific value' in this; I don't want to miss it.  How do you honor the many grieving levels involved in dealing with dementia?

Meditation

"Meditation is a liberative practice.  It's about liberation from mind-states such as greed, anger, and delusion.  This has real-world implications." Dr. Jon Kabat-Zinn

Some people may shy away from the healthy practice of meditation because it may have religious connotations for them, but religion need not be a factor in mediating.  Dr. Kabat-Zinn is the founder of mindfulness-based stress reduction (MBSR), a secular mediation-based approach to dealing with stress, pain, illness and daily living.  Years ago when I was working with students with cognitive and emotional disabilities, I led them through what I called 'relaxation technique' daily.  It was important for me to honor the separation of church and state in a public school setting, but I also wanted to give these children tools for handling the stress of life encountered by someone with disabilities.  Dr. Richard Davidson, director of the Laboratory for Affective Neuroscience at the University of Wisconsin says, "In the 1950's, hardly anyone exercised for their health.  Now that's an accepted practice.  Within fifty years, the same thing will happen with meditation."  Numerous research programs are indicating that meditation is a wonderful daily practice to help with the stress of life, and as caregivers for someone with dementia, the practice is particularly imperative.  Let us together form the intention to meditate for at least 10-20 minutes a day.  You may find, like I do, that the best time is at the end of your day.  Meditation can be supported by listening to cd's that lead you in meditation as you go to sleep at night. The one I am using right now is:  Three Stages of Healing Trauma by Belleruth Naparstek.  There are many other good ones.

Assisted Living

"The tree coming into spring teaches us how to let go into renewal.  For this is how the freeze around a broken heart thaws." Mark Nepo

Poignant quotation and very true currently for Dwane and me.  With doctor's orders Dwane has moved into assisted living.  The decision broke both his heart and mine, but was necessary as it was no longer possible to maintain safety for him at home.  4 injuries in 3 weeks -- even with my presence or family or paid supervision.  3 falls and a walk into an open door, sustaining a gash in his forehead.  Helping him move into assisted living was the hardest thing I have ever done; and the adjustment is tremendous for both of us.  I know there will be people who judge me harshly for this step, as I will also have to live with some of my own judgments about it. 
Once we have been delivered the diagnosis of Lewy Bodies Dementia there are no optimal options.  I want us all to remember that we are doing the best we can given this life circumstance.  The best we can do is continue to assess the status of the situation and make the best decisions for each of us involved.  There have been times during this that I have felt that it is so unfair.  He is such a good man and did not deserve this.  Nor did I.

Self Doubt

"When thrown off-center, when old patterns return, when feeling exhausted or depressed, I so quickly become the exaggerated cause of all that is not right with the world.  In that place of separation, we become darkly self-centered, blaming ourselves for not fixing things or making things right or for letting bad things happen."  Mark Nepo

Usually when we think of someone as egotistic, we think of braggarts, self-inflated and selfish people.  But Mark Nepo suggests it is just as ego-centered to think we are the cause of anything going wrong.  I think that is an easy trap to fall into as caregivers.  We begin to take on more and more responsibility, seeing to all needs and concerns, that - when some of this goes wrong, we feel responsible.  There is no way we can make entirely smooth the path for the person with the terminal and progressive condition of dementia.  Nor, I dare say, does it do them or us any good when we try.  Life by its very nature is not smooth; and, are we really doing someone a favor when we strive - perhaps wearing ourselves out by striving - to prevent any mishaps for someone else?  I moved home to a leaking roof.  No one tried to make that smooth for me.  It took my own action of calling a reputable roofer that prevented further damage.  While the person with dementia is likely not to be able to think and plan that clearly, he or she does need to experience the reality of their condition.  Of course, we need to have plans in place to keep them safe and to prevent problems, but it is to our own detriment if we try to smooth before them their entire life path.

Good Mental Health

"The measure of mental health is the disposition to find good everywhere." Ralph Waldo Emerson

For many years a goal of mine has been to have good mental health, which I happen to think also means having good spiritual health.  Emerson may very well have encapsulated the best definition of good mental health.  What could be a better way to live than to find good everywhere?  I once knew a woman who struggled all of her life with depression, which she believed was her innate disposition.  While there is definitely a biological basis to depression, what if there is also a choice?  What if one chooses to find good everywhere?  Do you think that might make a difference in one's life orientation? 

Caregiving is so stressful that I believe we need to be alert to the potential need for us to have psychopharmaceutical support in the form of antidepressant or anti-anxiety medications.  I also think looking for and finding the good everywhere is a good antidote. 

Hurtful actions

"Oh, dearest, you can't hurt me ---- only I can do that." Byron Katie

The above statement is true, even though it is difficult to practice.  Others do hurt us, but if we are really honest with ourselves, it is because we let them.  I don't know about you, but it is a work in progress for me to not allow others to hurt me.  I am getting better at it, but I have not reached Byron Katie's professed level.  One way to practice not allowing others to hurt us is the Buddhist way of nonattachment.  Neither be attached to or averse to what happens.  It is easy to take things too personally; whereas, most of the time people's actions do not actually have much to do with us.  They are often acting out of their own pain or confusion.  The only answer, it seems, is to live our lives with the intention of wanting the highest and best good for everyone, to strive not to take things personally, and to allow others the benefit of the doubt.  What if we consider that we each are doing the best we can within our unique life circumstances?

Caregiving as Addiction?!

"I have been learning that the life of a caretaker is as addictive as the life of an alcoholic." Mark Nepo

When I first read this sentence of Mark Nepo's, I was annoyed; and I have learned over the years that if something annoys me, it is good for me to consider it more deeply.  I am not sure what type of caretaker Mark Nepo is referring to (caretaker is a term also used for someone in relationship with a person with an addiction), but the more I have considered it, the more truth I see in it.  After all, let us consider how to identify an addiction:  it is something that consumes one's life at the expense of other things that bring them joy, robs them of things they value - such as relationships and their own health, and becomes the one and only focal point in their lives.  And, if we are honest, isn't that what caregiving for someone with dementia entails?  Someone who cares about me recently reflected to me that it was as if I was tending a 3 year old -- my antenna was up, a part of my attention was always on the safety and well being of the care receiver, and I was hyper alert for danger and mishaps. 

For each of us our reaction to caregiving and what we need to do for our own health will be different.  Some can reestablish their autonomy and mental health by having family or paid staff in, some can detach so that the caregiving is for them not such a burden (although I think that would be extremely difficult to do), and some can relax only when the care receiver is in a safe place and the caretaker has his or her own life back.  Let us not judge one another for the choices we need to make for our own well being and the safety of the person for whom we provide care. 

Wisdom

"When we resolve to realize our own wisdom first, we can easily and naturally see it in others." Jim Lockard

Is it possible that we can see the wisdom in others only when we are first willing to see it in ourselves?  I think it must be the same as love:  we can only truly love others if we are able to love ourselves. Dr. Lockard states that "we have an inexhaustible supply of wisdom to use in creating our life experiences."  Most, if not all, of us have been encouraged by our society to see the mistakes of ourselves and others.  What if we would resolve, instead, to see the wisdom of ourselves and others?  What if it is just a matter of perspective; that we resolve to look for the positive rather than the negative?  The American Heritage Dictionary defines wisdom as "understanding what is true, right or lasting.  Common sense, sagacity, good judgment."  I would like to ask each of us to look for, within the happenings of today, examples of our own wisdom.

"It is a characteristic of wisdom not to do desperate things." Thoreau

What is spirituality?

"Anything that removes what grows between our hearts and the day is spiritual. Being spiritual is much more useful and immediate than the books about books would have us think." Mark Nepo

What a delightful definition of being spiritual.  The spiritual path has long been the path I have chosen, but I have not thought to define it like Nepo does.  I knew that it was not the same as religious, although there is an aspect.  I knew that it involved what Carl Jung and Joseph Campbell describe as an interior journey, and I knew that it involved all aspects of one's life (not just 1 hour on Sunday).  Being spiritual means that we consider all involved when making decisions, that our actions and words are congruent, that our actions speak as much - or more - for us as our words, that we look for the meaning of life within our life context, that we fully feel the many emotions that it means to be human, that we value relationships rather than things.  What does being spiritual mean to you?

Others' Opinions

"The whole world could praise Sung Jung-Tzu and it wouldn't make him exert himself.  The whole world could condemn him and it wouldn't make him mope.  He drew a clear line between the internal and the external." Chuang Tzu

What an advanced practice - to be unaffected by others' opinions.  But, I think there is a balance here.  In Alanon there is the teaching to take the kernel of truth in what others say to us, and it is a practice I have long held.  Often, especially in criticism, there is a kernel of truth that is in our spiritual interest to hear.  We need to hear that truth, and let the rest -- the parts that are not true for us, fall away.  It is such an important quality:  to be true to ourselves above all else, that it comes down to us in many forms in literature.  A favorite quote from Shakespeare, "To thine own self be true." captures the essence of this.  As long as one is not mired in ego, as long as one has the intention of making decisions that are for the highest and best good for all concerned, then one can best live in being true to oneself.

Compassion

"Compassion is giving others (and author would add - ourselves) the benefit of the doubt, withholding judgment, holding harmless, and wishing well."  Dr. Jim Lockard

A morning's reading was about how we are called to honor our bodies.  Only we know when we have had enough, endured enough, given enough.  When we reach the time for a change in services for the person for whom we are caregivers, it is important that we have compassion for ourselves.  It is easy for others to think they might know the best decision for us, but only we can know for ourselves.  An important criteria in this decision is, 'how am I doing?'.  Really, how am I doing?  It seems to me that a decision truly based in love and honor of oneself, is the best decision for others as well.  Today let us monitor what our body is telling us about what we need, and let us honor that.  It is the ultimate in self-compassion.

Organization

"Sadly, the average person wastes at least 30 minutes, and often 60 minutes, a day, looking for things they know they have but just can't seem to put a finger on." Buttoned Up, a company dedicated to helping stressed women get organized.

Since we, as caregivers, experience high levels of stress with the caregiving, one gift we can give ourselves is to be well organized.  Not only is clutter unsightly, but it is a visual reminder of the amount of work waiting for us to do.  The above quote actually made me feel good, as I rarely misplace something -- but, when I do misplace something, I experience a high level of stress until I find it.  These women at Buttoned Up offer some great suggestions for de-stressing by getting organized.  It might be worth a visit at:
yourlife@getbuttonedup.com    It might just be one more technique for helping you handle the stress of caregiving, and life in general.

Yoga

"A UCLA research study last month concluded that a simple, low-cost yoga program can enhance coping and quality of life for caregivers.   Mayo Clinic Alzheimer's newsletter

More than 60 percent of caregivers rate the emotional stress of caregiving as high or very high. The incidence and prevalence of clinical depression in family dementia caregivers approaches 50 percent  -- according to research published by the Mayo Clinic.  And, this stress continues even for caregivers who place the person with dementia into a facility. 

Since being in a different setting for the winter, I have been attending yoga classes, and I find I just love them.  The yoga helps with flexibility and strength, and it also helps with the body/mind connection.  As caregivers, it is imperative that we find practices that will support our health and well being.  Yoga is one of those practices.  I hope you will try it.

Living as Example

"Preach the Gospel at all times, and when necessary, use words!" St. Francis of Assisi

What a clever way to remind us that actions speak louder and truer than words.  In fact, we each know someone (and have at times ourselves) who speaks excessively about something -- as if to convince themselves.  So, how do we preach the good news without words?  Being poised is one example.  Being gracious is another one.  Speaking our truth, with kindness and humility is another.  Interfacing gently with our fellow humans and the planet is another.  Treating every other person with dignity is another.  Have you ever experienced the smile and eye contact of a stranger, which seemed so warm and real?  We can be that kind of person for others -- and for ourselves.  Nonjudgmental.  Equanimity.  Few words. 

In this season of spring, and renewal in some religions, let us begin anew to have our actions speak louder than our words in ways that reflect love and respect for ourselves and others.

Suffering

"A man who fears suffering is already suffering from what he fears." Michel de Montaigne

Suffering seems to be part of the human experience, but I also believe the above quote is true.  When I dread telling Dwane of a new level of support I am implementing or that I will be gone for a short time, that dreading is creating suffering for myself.   Is it possible to develop thick enough skin where we do not allow the care receiver's opposition to affect us?  I think that is easier for some people than others.  I have been told that I am too sensitive.  Perhaps that is true, and if so, it is both an asset and a liability.  I would not want to diminish my capacity for compassion, but I would like to temper my tendency to be affected by other's disapproval.  The answer seems to me to make our decisions based on what is best for all (thereby eliminating some aspects of our own ego), and then to be at peace with those decisions.  There is enough suffering; we don't need to create it for ourselves by fearing or dreading what may or may not come.

Burnout

"Burnout describes the isolation, disassociation and fatigue that caregivers experience when caring for their elder loved ones -- on top of managing the stresses of everyday life.  43% of dementia caregivers report physical stress, and 61% report emotional stress."  Alzheimer's Association

The concern for burnout is very much a reality for those of us who are caregiving.  So, how does one avoid it?  The answer is probably different for each of us, but some suggestions are: 
-Know your options -- there is adult day care where one can take someone with dementia, private and agency services within the home, and assisted living and nursing homes. 
-Plan ahead -- that may be too late for those of already in the caregiving role, but it is important to have Living Wills and Durable Powers of Attorney created while the person has the cognitive ability to make decisions.
-Seek support:  there are support groups for both dementia and Parkinson's.  I have not found them to be personally supportive, but many people do.  In any case, have some close, trusted friends to support you.
-Look out for your own needs:  Know your limits and honor them.  It does no one any good to allow these diseases to take the caregiver, as well as the care receiver.

Parkinson's Awareness Month

"There's no point in worrying because if something (bad) does happen, then you've lived it twice." Michael J. Fox

One of the notable features of Lewy Bodies Dementia is the parkinsonian aspect.  Tremors, muscle rigidity, retardation of movement, shuffling, difficulty with balance and mobility.  April is Parkinson's Awareness Month, and - while Lewy Bodies Dementia is not the same as Parkinson's, perhaps their research can overlap and help each other.  The Michael J. Fox Foundation has raised $285 million to advance understanding of and research into Parkinson's.  In an interview Michael J. Fox says that he is not 'fighting' Parkinson's, he is accepting it.  He goes on to say, "Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it."  An admirable approach.  It seems to me that it is fruitless to 'fight' the disease of Lewy Bodies Dementia, but to navigate our way through this disease, and the role of caregiving, with dignity and openness to ways to make the path smoother.

Grieving

"Three stages of healing trauma: a 3-CD set by" Belleruth Naparstek

A mental health professional recently told me that being caregiver for a spouse with dementia is more stressful than either divorce or death of a spouse.  That would seem to be true, as it is a series of deaths:  death of what the relationship was, death of hopes and dreams, death of physical and cognitive capacities, death of our own and his/her independence -- to name a few.  The trauma and grief can be very damaging, so how can we heal as we continue to experience the grieving of the daily 'deaths'?  The CD set named above, purchased at http://www.healthjourneys.com/, lent me by a friend is one good tool.  It leads us through guided imagery to help us release grieve, feel safe, and return to serenity.  It is not a substitute for professional counseling, but it is a good tool that we can use right in our homes.

Self Knowledge

"Knowing yourself is the beginning of all wisdom." Aristotle

Knowing oneself is important in navigating life in general, and critical in the life of a caregiver.  There will be people with strong feelings about how care is provided for the person with dementia.  We have to know ourselves to know what is right for us.  Of course, we will keep in mind the best interest of the care receiver; in fact, I think the best intention to have is to want and intend the best and the highest possible for all concerned.  That is the optimal place from which to make decisions:  what is the best and highest choice, among the options, for everyone involved?  If it has been your habit to make decisions in this way, you may in the past have discussed with those others involved what they thought was best.  Depending on the type of dementia of the person for whom you provide care, you probably will not be able to discuss what is best with him or her.  So, decisions now will be more autocratic, with still keeping what is best for them, us and everyone in mind.  Our decisions are best when they reflect what we truly believe is best for everyone involved.  When our decisions are made from this orientation, we can rest assured that we have made the most loving decision possible.

Being authentic

"The energy of being real has more power than outright persuasion, debate or force of will." Mark Nepo

Nepo compares our being real like the sun, which shines equally on all things, helping plants to grow, keeping warmth in the world.  David Hawkins has said similar things in his writings; that the more authentic one becomes, the more one influences the world in ways of peace, love and harmony -- without even trying.  In this time as caregivers, we are stressed, overworked, overtaxed -- and yet; I would say that we also have some time to devote to becoming authentic. So, how do we do that?  There are many ways that great thinkers suggest:  be willing to understand and grow from one's dreams, meditation, reading literature or watching dvd's that help us to shed what is not authentic - thereby becoming more authentic.  Artistic expression can help us to get to who we really are.  As humans we develop personas in reaction to the experiences we have in school and in life that cause us to reject parts of who we are.  It seems to me that it is a life practice to go back and regather those aspects we have rejected and to live from that more fully-human place. 

Personal change

"Often we give up our right to renewal to accommodate the anxiety of those around us.  When we maintain ways we've already discarded just to placate the ignorance of those we love, we lose out access to what is eternal." Mark Nepo

Has life ever caused you to change the direction you were going, perhaps internally or perhaps externally?  When we change who we are, it is upsetting to those around us.  But, we need to remember, that a life unexamined is a life not worth living.  (Socrates)  I agree.  If we are on the path to either personal maturity or spiritual maturity, we will change many things about ourselves.  Fear, pride, discomfort, wanting to please others, addictions to substances/situations/people:  all must be shed.  They must be shed in order for the qualities of joy, love, peace and harmony to prevail. 

It seems that a common component of dementia is anxiety, and it may very well cause the person with dementia some anxiety if we continue to change and to grow as human beings.  It is our choice.  Do we let their anxiety stop us from becoming more fully who we are?  Or do we honor our unique path and follow it?