Attaining Peace

"When one cherishes no fear of anything, when one is not feared by anything, when one cherishes no desire, when one bears no hate, then is one said to have obtained to the state of Brahma."
The Mahabharata

According to a dictionary, Brahma is the ultimate ground of all being.   As such, it must be the place of peace, and in order to attain peace, it is wonderful advice to have no fear, be feared by no one or anything, have no desire and bear no hate.  The Course in Miracles says there is only fear and love.  Knowing that there is only fear or love can be a great barometer for our behavior.  Are we behaving out of fear or out of love?  Toward our loved one, are we behaving out of our fear for the consequences and process of their terminal disease process, or are we behaving out of love -- seeing the person for the essence of who he or she continues to be.  We can use this measuring stick for others too.  Is our loved one behaving out of fear or out of love?  It seems to me that fear is a large component of some types of dementia.  Knowing that, we can have more compassion.  

Change in Medication

"Unhappy is he who mistakes the branch for the tree, the shadow for the substance." The Talmud

The medical director at the nursing home has done some research, and she recommends that we discontinue Dexedrine -- which has been used for narcolepsy.  Her research indicates that this medication may be contributing to the hallucinations.  It is certainly worth trying, and I appreciate her looking into it and suggesting we try going without it.  Perhaps at this point, he does not need it; although, I will be watchful to see if he is unable to stay awake more than before.  He sleeps a lot any more, so it may be hard to see if this is an increase.  I think that we, as caregivers, might want to review the list of medications periodically to see if all of them are still warranted.  If your loved one, like mine, is on a long list of medications, it is worth considering if they are all still warranted.

Removing Error

"Pray not that sinners may perish, but that the sin itself may disappear." The Talmud

Are you like me, in that sometimes, I wish certain people would disappear from my life?  We all have troublesome people in our lives, and many teachings tell us that it is these very people who are our greatest teachers.  Rather than pray that terrorists or that pesky person in our life disappears, isn't it better to pray that hatred disappears from the earth?  It is astonishing the evil things that people have done because of hatred.  If there is only fear and love, then, surely, hatred must be based in fear.  Fear of the unknown, fear of what is different from what we believe, fear of the other as different from us.  With caregiving we can become confused between the disease and the person.  My loved one is at his essence a remarkably kind and dependable person, but that is not always what I see within the disease process.  Let us separate the disease from the essence of the person, so that this error may disappear.

God's Plan

"God is good, and He has a plan for our lives that is greater and more blessed than the lives we pick out for ourselves, and I am so thankful about that." Lygon Stevens

Lygon was a 29 year old avid mountain climber, having climbed four Andean peaks and 39 of Colorado's highest peaks.  The above quote was written in her journal 3 days before she was killed in an avalanche while climbing Little Bear Peak in Colorado.  She is said to have climbed mountains to "meet God there."  If you believe in God, or Source or Universal Power, where do you  meet it/him/her?   As part of my spiritual practice, I vowed to meditate every day in 2015, and already the demands of caregiving and life sometimes squeeze meditation out of my schedule.  But, actually, we do not need to climb mountains nor meditate, all we have to do is be present to what is before us.  Sounds simple, but it is actually a practice -- again and again every moment of every day.  Do you believe that God has a plan for your life?  Sometimes, when I look around and see the suffering, it is hard for me to believe -- but, at other times, I can see things in the bigger scheme; and there does seem to be order.  If God has a plan for your life, what do you think it is?

What Is Right For You?

"Forget what you have been taught, so you can remember what you know." Alan Cohen

Seems odd, doesn't it?  -- that we are to forget what we have been taught; in order to remember what we know.  And, yet, it is true in many ways.  What have you been taught by word, example, or unspoken expectations about being a caregiver?  For me, my mother would express great dissatisfaction that a relative, son and wife, put their mother into a nursing home - despite the mother's displeasure.  I think my mother did feel for the aunt, but it also told me what my mother thought about putting people (perhaps her especially) into nursing homes.  One of the most difficult decisions I have ever made was to put my loved one into assisted living, and I probably could not have done it without the support of a few significant people -- because my 'teaching' was that one did not exercise the option of a care facility, but instead was to do the caregiving at home, despite the cost - especially emotionally.  It is a good practice to discover what we have been taught --- to see if it really fits who we are.  Surprisingly perhaps, much of what we are 'taught' does not fit us, nor support us.

Authenticity

"The mystery is that being authentic is the only thing that reveals to us our kinship with life."
Mark Nepo

Being authentic is such a struggle for most humans, myself included.  From early on we are shamed about some parts of who we are, praised for some parts of us that are not authentic, and told we are something or someone we are not.  Many of us have regrets about our professional or personal paths.  I wonder sometimes what path I might have taken had I had guidance when leaving high school.  Then, we become caregivers.  Do you ever stop and wonder how life has taken you to this?  To consider 'why' is often a waste of time, but -- having arrived at caregiving -- we can decide how to do it authentically.  What is authentic for you?

Honoring What We May Want

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   "I've come to understand that without the healthiest form of self love -- without honoring the essence of life that this thing called "self" carries; the way a pod carries a seed -- putting another before you can result in damaging self-sacrifice and co-dependence." Mark Nepo
   
   

   I've struggled with this my whole life, and it is particularly perilous in caregiving.  How do we honor our own self and our wants and needs -- while also attending to the wants and needs of another?  A very challenging task.  Far too easily we can become immersed in the needs of the other, or we can abandon the other for our own wants and desires.  I think what we are looking for is balance.  Seeing to the needs of the other without sacrificing our own.  How do you do that?

Living a Sacred Life

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   "To live a sacred life means to live at the edge of what we do not know." Anne Hillman
   

   
   

   There is much we do not know about the terminal disease our loved one has -- even if we study extensively about it.  For each individual the disease will have predictable and unpredictable paths.  Living the sacred path as caregiver means living at the edge -- with compassion -- what we do not know.

New Perspectives

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   "One doesn't discover new lands without consenting to leave sight of the shore for a very, very long time." Andre Gilde
   
   

   One cannot have a new perspective without leaving behind old perspectives and old beliefs.  What beliefs have you held about being a caregiver?  Do those beliefs serve you?  What beliefs have you had about dementia -- or whatever disease for which you are providing care?  Do those beliefs serve you?  One belief I had was I would be able to handle the physical decline as well as I have handled the psychological.  That is not true for me.  It is much harder, and I release that belief -- which frees me to see him and hold in my heart all the physical changes with compassion for him and for me.  

computer problems

Today's blog will be brief.  I got my computer out of repair shop yesterday, and it is still not working.  Isn't it amazing the things we have to take care of in addition to being caregivers?  I use my computer extensively, so it is inconvenient to have it not working.  I hope your day is going well

Honoring Our Minds

"Our mind is unlimited as long as we realize God as its nature, character, quality and quantity. "  Joel Goldsmith                    Our minds are precious and part of what makes us unique.  We are not our minds, but our minds can serve us -- as long as we know the mind serves us and not the reverse.  That is  what mindfulness can help us with -- managing our minds.  As caregivers for someone with dementia, we may see the mind of our loved one being devastated by the disease.  But, in my opinion, there is still beauty there.  I am still in awe of some of the things he says.     

 

                                                   

                                                           

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Darkness of the Disease

"Melt your heart by remembering grace." Tim Keller

No matter how well we educate ourselves with the progression of the terminal illness of dementia, we may find ourselves reeling in reaction to a new level of decreased functioning.  It seems that it is one thing to know something intellectually, but to actually witness it in someone we love is quite another matter.  Mental health professionals suggest that the best way to move through a feeling is to experience the feeling, so it is important for us to acknowledge the sadness that we will experience along the way as caregivers for someone with the devastating illness of dementia.

Considering Overload

"Listen ----- are you breathing just a little and calling it life?"  Mary Oliver

Sometimes, as caregivers, we have so many tasks to juggle we may find ourselves holding our breath.  Today someone I know told me that I looked tired.  That is not exactly the feedback we want to get about our looks, but all of us who provide caregiving are tired -- no wonder we may look it.  In addition to seeing to the needs of our loved one -- even if we are not providing 24/7 care -- there are bills to pay, money to earn to pay the bills, household chores to be completed; and often, very often, we are doing these tasks completely alone.  Yes, we have a heavy load to carry, but we must remember to breathe.  Stopping periodically during the day and taking two deep breaths can be restorative.  Yoga instructors often recommend breathing in through your nose and out through your mouth.  Today, let us remember to breathe --- and to live our lives.  .  

Living Who We Are

"Living through enough, we all come to this understanding, though it is difficult to accept:  No matter what path we choose to honor, there will always be conflict to negotiate."  Mark Nepo

Nepo expresses wisdom in saying no matter what path we choose to live, there will be conflict to handle.  If we live our lives to accommodate and please others, we will have the interior conflict that comes with living invisibly.  If we choose to honor our own truth and live by that, we will have conflict with others who want us to remain the same as we always were-- or as they perceive us to be.  It is a critical choice:  live our truth and displease some others some of the time, or live pleasing others which will drain our own life energy.  All of us have experienced the pressure of someone close to us who is wanting us to be more like they want us to be.  That is deadly for us to comply.  Certainly there are compromises within relationships, but that is fine line -- willing to compromise versus giving up the essence of who we are.  Let us choose carefully, for in the end -- it is we who live with the consequences of that choice.  

Being True to Ourselves

"The unwavering truth is that when we agree to any demand, request or condition that is contrary to our soul's nature, the cost is that precious life energy is drained off our core." Mark Nepo

Probably none of us asked to be a caregiver, unless you are caregiver of a baby you desired or take this role of caregiving on voluntarily.  Most of us will have had caregiving cast upon us.  Even with caregiving, I think it is important to not agree to any demand, request or condition that is contrary to our soul's nature.  I think it is important for us and for our loved one.  That does not mean we do not have some responsibility toward our loved one.  I think we do need to make sure our loved one is safe and has respectful care, but that does not necessarily mean the care comes from us.  Even if you feel financially like you have no choice, there are options available to you.  If you choose to care for your loved one 24/7, as I did for several years, then please make sure you also take care of yourself in the process.  In fact, a good rule of thumb is to provide 24/7 care only as long as you can also care for your own well being.  

Navigating Life's Storms

"This transcendent thought of God should ever be with us, and, like Jesus, we should walk over the waves of human disturbance rather than being submerged by them." Ernest Holmes

What an interesting perspective of Jesus walking on water at the Sea of Galilee.  We too can imitate him by navigating the storms of our own life better.  The terminal disease for which we are caregivers might be one such storm.  Let us do our caregiving with dignity, staying above the lesser ways of showing up.  There are other storms too.  I recently raised the question of cross country skiing on a municipal golf course during the winter, and I have been surprised by the maelstrom that question raised among the golfers -- who, although they cannot use the course covered with snow -- seem to feel they are the only rightful users.  In any stormy situation in life (and we will have them), we can choose graciousness, dignity, and to come from a place of love.  

Kindness and Its Reward

" . . .the reward for kindness is not being seen as kind, but the electricity of giving that keeps us alive." Mark Nepo

Sometimes, in our humanness, we can hope to be recognized for being kind, and I love what Nepo says about that.  The reward for kindness is not to be seen by others for what we did, but - instead - the reward is that by being kind we are more alive.  There is research that tells us that just seeing someone do an act of kindness for someone, causes our bodies to have an increased sense of well-being -- even if we are not involved in the kindness in any way.  Is it possible that one of the basic ways we are interconnected is through the electricity or energy of being kind?  I know that my heart was supported when I saw a staff member initiate kindness toward my loved one.  It is good for each of us to remember that we may not get recognition for being kind, but kindness has its own built-in rewards -- for everyone.  What act of kindness can you do for yourself or someone else today for which you do not seek recognition? 

Freedom

"To be free from the bondage of fear, superstition and want, the mind must be riveted on freedom." Ernest Holmes

Over the course of human history, much personal sacrifice and comfort has gone toward assuring more freedom.  We can think of Gandhi, Martin Luther King, or Elizabeth Cady Stanton and the personal sacrifices each of them made to provide greater rights and freedom for many.  What does that have to do with caregiving?  As caregivers, one of our goals is to provide as much freedom to our loved one as the situation warrants.  Yesterday, when I visited my loved one, I was struck by the compassion and proactive stance of one of the staff toward my loved one.  She thought his discomfort might be caused by the need to use the toilet, and she incorporated making the toilet available to him at times when he was uncomfortable but unable to say why.  I  expressed appreciation to her and then told the director of her compassionate approach.  She was providing a structured sense of freedom for my loved one, and that is to be applauded.  Freedom from discomfort can be one of our goals for our loved ones, and sometimes that discomfort can be remedied in the most basic of ways.

Facing Our Fears

"If we fear change, we are blind to the abundance of life.  If we fear death, we are blind to the mystery of the unknown." Mark Nepo

As humans, we all seem to have some fears.  Some of us have more than others of us.  The Course In Miracles says there is only fear and love.  So, in our actions and decisions, we can notice if we are choosing and acting out of fear --- or out of love.  Our fears may be subtle.  Fears can include playing it small, so that no attention is brought to a person.  Fears can mean hanging on to someone beyond when that is good for either person.  As caregivers, we probably fear the future -- projecting out onto it dire considerations of what the death process might be for the person we love -- or the sadness of the life we will live alone after our loved one is gone.  Today let us consider giving up our fears and daring to hope for the best (without knowing what that is) for ourselves and our loved ones.  Let us choose to act out of love -- for ourselves and all others.

Kindness

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   "Pure religion manifests itself through acts of kindness." Science of Mind, p 499
   
   

   The Dalai Lama has said the same thing:  that his religion is kindness.  Perhaps there can be no religion without kindness.  We all have known people who profess great faith, but are unkind to others.  Perhaps we have even done that ourselves at times.  As caregivers, perhaps the greatest quality to be called forth from us is kindness.  We listen to the stories and complaints and hallucinations of our loved one.  We listen, we draw him or her out into areas we know were areas of interest, we are kind.  I often try to draw my loved one into a memory of history, as he knew more about history than any person I have ever known.  I also talk with him about memories we have shared, trips we have taken, we laugh about the broom we used to sweep the floor in Russia.  Kindness.  It blesses our loved one and it blesses us.  

Declines and Plateaus

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   "The only value any truth has is in the degree of its realization." Joel Goldsmith

   As I have observed the progression of this disease of dementia, I have been struck by its periods of plateaus and sudden declines.  We have been in what seems like a plateau for many weeks -- where he seemed about the same day to day.  We have now had a sudden decline.  I'm not sure if that is because influenza A is sweeping the care facility or if this is a new norm.  Whichever it is, it is very sobering for me. He is weak, in bed, dullness in his eyes.  So sad.  It seems like the light of the essence of who a person is - is dimming with the progression of this disease.  

Expanding Our Life

"Love, and do what thou wilt." Saint Augustine

Mark Nepo tells of a story of his friend who, while cleaning out a small fish bowl, put his goldfish into the bathtub.  When he went to the tub to put the goldfish back into the fish bowl, he was astonished that the goldfish had not swum out into the tub, but remained swimming in a small circular manner as if they were still in the bowl.  Although no long confined, they had learned to accept the limits of the sides of the bowl.  How like that we can be!  We have all had people tell us what they think we should or should not do, what occupation we should pursue, that some jobs were acceptable and others were not, or that some types of people could achieve certain things and others could not.  Those examples, among others, puts and can keep us in our own fish bowl.  Even as caregivers, you may have preconceived ideas of how it should be done, and - most certainly - you have had , as I have had - those people who tell you how you should be caregiving.  Today, let us break out of the fish bowl into which our, or others', preconceptions might keep us.  As caregivers, today let us live out that role from our hearts.  

Honoring Our Life

"Realize that thou art that - Brahm --which is the cessation of all differentiation, which never changes its nature and is as unmoved as a waveless ocean, eternally unconditioned and undivided."
Raja Yoga

What if that is true?  What if we are each part of Brahm or the Source or the Divine?  What if that is true?  Then, perhaps there would be less hatred, less righteousness, less entitlement.  Perhaps we would see that the person, for whom we provide care, is really part of ourselves?  This is not just a spiritual consideration, but some in psychology also support the idea that we are all one.  Every aspect of every person is part of who each of us is.  With the tragedy that has just happened in Paris, perhaps it is time to consider this suggestion seriously. 

Being Gentle With Ourselves and Others

"I have no power of miracle other than the attainment of quiet happiness.  I have no tact except the exercise of gentleness."  Oracle of Sumiyoshi

When I visit the nursing home, I see people arguing with their loved one or appearing awkward at how to deal with the altered reality of the loved one.  Both are normal human behaviors, but they are not helpful.  I never argue with my loved one.  The only time I try to change his thinking is when he is distraught over something.  Recently, he was very agitated because he felt he had to get his grades in (he was a teacher his whole life) and he was late.  Because he was agitated, I said to him that I had never known him to be late getting his grades in, and I requested he not worry about it.  Other times I will say to him that I will take care of whatever it is he is agitated about --- like where his car keys are.  That seems to be sufficient:  that I hear him and assure him it will be okay.  What works with your loved one?

Opening Our Eyes To What Is

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   "Our belief in life cannot eliminate our suffering, only find its way to fee our heart." Mark Nepo
   
   

   We can be sure that there is suffering in the world.  All we have to do is look at our situation -- the situation of our loved one.  We can focus on the suffering of our loved one who has a difficult and terminal illness, or we can focus on the good in life.  Even when I am with my loved one, I focus on the good.  I try to draw him out of his hallucinations by reminiscing with him about past trips, past experiences.  This seems to work sometimes.  We can giggle and enjoy the memories.  But, most of the time, I just listen to him within his own hallucinations.  It depends on the day.  I try not to resist either circumstance, but to spend time with him in whatever capacity is available on that given day in that given moment.     

   
   

   
   

   
   

Life Is Good

"It does not matter if we are the newborn taking its first breath or someone who has many years of history behind us, God offers us the same, consistent fullness present throughout the cosmos.  We always have the same opportunity to receive as much or as little as we will." Margaret Stortz

A person reads similar thoughts these days.  That life is good, always good, and that it is merely our perception and orientation which makes the difference.  What if that is true?  If you, like me, can think of many examples of what we might describe as "bad" or "lack", then it is harder to believe that God offers us the same consistent fullness always.  We can look at our loved one suffering, or at ourselves in the position of caregiver and think that life is not so great, but that thought would be error.  Life, with all of its ups and downs and challenges, is inherently good.  I think it benefits us to believe that.

Showing Who We Are

"My grandmother told me; 'Never hide your green hair --- they can see it anyway'."  Angeles Arrien

What a fun quote to remind us to not hide who we are.  I found myself in a setting recently where another person was taking up an inordinate amount of psychic space, which I discovered was irritating to me.  Upon reflection, the irritation is probably based on my tendency to not take up my share of the psychic space, but to fly beneath the radar - so to speak -- in an effort to be invisible.  We all have experiences from early childhood where we are teased and taunted for some aspect of who we are.  As the youngest child of four, I think I may have had more than some people have of the teasing and taunting.  A result of the teasing and taunting can be that we hide who we are in the hope of avoiding criticism.  I know that has been true for me, and now I am going to take steps so that it is no longer a defense mechanism.  I am going to show up as fully as I want in any given situation, and I hope you will too.  The only way we can heal the world is by being fully ourselves and allowing others to do the same.  It does not mean we have to take up more than our share of the psychic space -- that is as unhealthy as taking up too little.  If we each speak up, show ourselves and honor one another, the world - and all in it -- has a chance to heal.

Honoring Our Good Fortune

"We could never have guessed We were already blessed where we are" . . . James Taylor

Is it possible that we are already blessed where we are?  It seems that we can either focus on what is wrong in our lives -- and there will always be some things that we would prefer were not part of our lives --- or we can focus on the manifold good in our lives --- and there will always be manifold good.  It is bitterly cold here now.  I started on my walk today and turned around after a few blocks because of the extreme cold.  I could either focus on that bad experience or I could  focus on the good:  Friends and family who love me and my loved one, safety and shelter and adequate food.   There is so much good.  

Living From Our Center

""the nature of becoming is a constant filming over of where we begin, while the nature of being is a constant erosion of what is not essential.  This is the only thing worth teaching:  how to uncover that original center and how to live there once it is restored." Mark Nepo

We spend much of our lives identifying ourselves with our gender, our family, our educational level, our professional choice -- we can even identify ourselves now as caregivers.  But none of those roles are really us, and I think Mark Nepo is right -- that our task in life is to uncover the center of who we are and to live from that.  Much of the work I do with people in therapy is to help them rediscover the center of who they are and to live from that.  It is also much of the work I do with myself.  Is it good to ask ourselves:  who am I?  Who am I without the role of mother/father, wife/husband, daughter/son, job, gender, , caregiver, financial status?  Who am I really?   A goal of mine for 2015 is to find out even more who I am.  

Help With Sleeping

"Adequate sleep is essential for dealing with life's stresses." Mayo Clinic

My daughter told me about a non-addictive sleep aid:  hydroxyz.  It is an antihistamine.  My doctor says it is not as effective as ambian, but I do not want to take anything potentially addictive -- and ambian can be very addictive.  Caregiving is stressful.  It helps if we at least get a good night's sleep.  Other ways to sleep well are to avoid alcohol 2-3 hours before bedtime (and drink moderately in any case) and to avoid screen time 2-3 hours before bedtime.  Having a bedtime ritual, with bed time being consistent also helps.  For 2015 let's sleep well so we can cope well. 

Lowering Cost of Namenda

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   "Namenda is a drug commonly prescribed for people with dementia." NBC news

Tonight's news had good news for those of us paying for Namenda.  Our personal out-of-pocket cost that are not covered by prescription insurance is about $500 a month.  The makers of Namenda, Forest Lab, attempted to take Namenda off the market -- before their patent expires and competitors can provide a cheaper generic form -- in an effort to force patients to a new, and still-patented, drug they make.  Forest Lab made $1.5 million dollars on Namenda last year, so it is high stakes for them.  But in a rare action a judge has ruled that Forest Lab cannot take Namenda off the market and try to force patients to a different, expensive drug they make.  Good news for us which we will want to follow.

Happy New Year

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   "For as the stars need space to be seen, as waves need shore to crest, as dew needs grass to soak into, our vitality depends on how we exclaim and rejoice, "I see you."  "I am here."
   Mark Nepo
   
   

   In the above quote Nepo is referring to what African Bushmen do to greet each other.  When one sees another coming out of the brush, he/she says, "I see you." The person coming out of the brush exclaims, "I am here."  Nepo contends, as do I, that we all have to be seen by others to know our own worth.  Nepo says his grandmother is who saw him and rejoiced in him when he was little.  My mother was the first one to do it for me.  Who rejoiced in you when you were young?  Nowadays I seek out friends who are capable of seeing me as I see them.  It is still a human need:  to be seen, to let others know that we are here. 

   
   

   I wish you all life's good in 2015.