Happy New Year

In whatever sense this year is a New Year for you, may the moment find you eager and unafraid, ready to take it by the hand with joy and gratitude." Howard Thurman

Well, another year is ending.  It has been a year of ups and downs, both in Dwane's physical/cognitive status, but also in my emotions. Summer and fall were a time of considerable discouragement for me, so I spent the holiday season re-evaluating, regathering myself.  I have lost too much of myself to this caregiver role and to the dementia.  It is hard to explain, but my attitude has now shifted.  There may not be a lot of difference in outward appearances for the way I live my life, but it is different.  I have returned the focus to my own life.  It feels good.  I hope each of you come to peace between you/your life and whatever you have in your life that could take a lot of attention from fulfilling your own life purpose.  The dementia really is the journey of the person who has it; for us touched by that life:  we have a responsibility to the person but not for the person.  Our responsibility for life remains with ourselves and what we do with our one, glorious life.  May 2012 be full of blessings for each of us.

Year-end inventory

"The key to a spiritual life is discovering that there is something unique about you that is a part of God's plan." Monsignor Gregory E.S. Malovetz

I don't know about you; but I tend toward introspection, toward wanting to see my part in the bigger picture, toward discerning the meaning of life and why I am here.  It has come to be my belief that we are all here for a purpose, and that we have a responsibility to live our lives so that our gifts and talents are used to benefit ourselves and others.  So, how does that happen when one is a caregiver for someone with dementia?  I wonder, for myself, if this is not a time out of society, for my own soul's growth; a kind of desert experience.  I have been spending this week doing a personal inventory; looking at where I have been and preparing for what lies ahead.   What I have come to is - despite the fact that I am a caregiver for someone with dementia - I still have a responsibility to live the life I was given.  Not sure fully what that means yet, but I do know that I am reclaiming my life, my right to live my life - after having set it aside to be a caregiver.  This does not mean that I won't still be a caregiver for awhile, but it does mean that it will be with a different attitude and focus.  I am back in my life.

Three questions

"The Blessing Way contains three questions we can ask ourselves every day." Angeles Arrien

1.  What made me happy today?
2.  Where did I experience comfort, peace, solace, and a sense of sanctuary today?
3.  Who or what inspired me today?

Three easy questions that can help us be more our true selves and to be oriented toward gratitude for the mystery of our own lives. 

The Blessing Way

"These are indigenous practices that support being your compassionate self and bringing your best self into the world." Angeles Arrien

I had the good fortune to hear Angeles Arrien speak some years back.  She studies spiritual practices around the world, and distills their wisdom for us.  She suggesst a practice called The Blessing Way which is comprised of 3 things we must do every day.

1.  Pray or set sacred intention
2.  Give gratitude every day
3.  Take a life-affirming action to relieve the suffering in the world. 

Walking

"Walk 100 steps a minute for better health.  Walking is life-extending, heart-saving and blood-pressure-lowering." Dr. Paul Donohue

Readers of this blog know that I am a strong advocate for daily exercise.  Walking is something that any of us with mobility can do easily, inexpensively and in almost any conditions.  2000 steps is approximately equivalent to 1 mile, and fitness experts recommend we get 10,000 steps, or 5 miles, a day.  I do not always get 5 miles, but I make sure I get at least 3 miles daily.  Some enjoy using a treadmill or indoor track; I try to walk my miles outside because I find nature so soothing.  It is snowy and icy where I live, so I sometimes snow shoe or cross country ski instead of walking.  Wearing a pedometer is a reliable way to ensure we get the number of steps that we want into a day.  I like the type that simply count steps (not calories, etc.), and Omron is one that does that and is easy to use. 

As caregivers for dementia it is imperative that we attend to our own health, and daily exercise is one very good way to do that. 

Lavender

"A high-quality essential oil of true lavender is an irreplaceable gift of nature because it provides so many benefits." Dr. Daniel Penoel and Rose-Marie Penoel

As caregivers for someone with dementia, it is important to find easy ways to support our own health and well being.  Lavender essential oil could be one of those ways.  Lavender oil is reported to be calming and helps someone relax enough to get restful sleep (and isn't sleep one of the most important things we need?).  It is also used as an anti-inflammatory, for skin irritations, insect bits, and overall skin health.  People who support the use of essential oils recommend that one get a good quality of true mountain lavender - called fine lavender.  This could be an easy way to support our own well being, and the well being of the person for whom we provide care.

Happy Holidays

"We can easily forgive a child who is afraid of the dark; the real tragedy of life is when men are afraid of the light." Plato

A fitting quote during this season in which we in the northern hemisphere have just passed the shortest day and longest night of the year, and the season which has long celebrated the return of the light, birth and rebirth.  On the one hand we have the triumph of light over darkness -- an important theme in our human consciousness; and on the other hand we have the symbolic birth or rebirth that ensures life will continue.  So, today I wish us all peace and good will towards each other.  May the season bless you with the light you desire. 

Taking care of ourselves

Taking care of ourselves in a righteous way is meaningful service to a greater task because we cannot give what we cannot be." Marianne Williamson

What an appropriate suggestion for this busy holiday time of year.  When you have made your lists of persons to whom to give gifts, did you remember yourself?  What do you want for you this holiday season?  I want a miracle.  I am not going to tell God what shape to put the miracle in, as God probably knows that better than I.  What do you want for Christmas or Hanukkah or other holiday you are celebrating this season? 

Ego

"The ego is suspicious at best and vicious at worst." A Course of Miracles

Now that is strong wording.  According to Marianne Williamson's interpretation of the above book, either the ego will survive or we will.  She says the only antidote for ego and its fears is love.  "Love is to fear what light is to darkness; in the presence of one, the other disappears." (Marianne Williamson)  It seems to me that we must first develop a healthy love of self, and then we can include loving others.  Something to consider with any decision we make:  Am I making this decision out of love or out of fear?  That even includes caregiving.  Each decision:  Is this decision coming from love or fear?

Giving

"Researchers in the field of consciousness studies have found that giving is good for you --for your health, your happiness, and your sense of purpose!"  IONS sponsored research.(Institute of Noetic Sciences)

As caregivers for someone with dementia, we certainly do give.  Plenty.  Of our time, talents, caring, organizing, etc. etc.  Perhaps it is important to consider the attitude with which we give.  If altruism, as the above research indicated, improves our immune system, then I suggest that the 'giving' our caregiving entails can benefit us - particularly if done with an attitude of altruism.  The dictionary defines altruism as 'concern for the welfare of others'.  It is my opinion that life is best served if we have an attitude that holds the best for ourselves and all others.  Let's see how that benefits our immune system. 

Forgiveness

"Forgiveness isn't just about being nice -- it's about being spiritually intelligent.  We can have a grievance or we can have a miracle, but we cannot have both." Marianne Williamson

I agree.  Some years ago I began to realize that if I did not forgive someone, there was some kind of an energetic entanglement that kept me bound.  Perhaps it kept the other person bound too; I just know it kept me bound.  So, it is spiritually intelligent to forgive.  Every single one of us has been betrayed, rejected, abandoned, treated badly by someone, cheated out of something.  It is part of life.  Our role, in my opinion, is how we deal with those injustices.  Most important is that we choose to forgive the person or situation or agency.  And, I do think forgiveness is a choice.  I hear people say they cannot forgive someone.  I don't think that is true.  I think it is honestly just as simple as choosing to forgive.  The only caveat is that we may have to choose more than once, as forgiveness - like many spiritual practices, is often done in layers.  We forgive one layer or aspect of the event, which reveals another layer to be forgiven.  The gift in this forgiving is our own freedom.

"Do forget what was done to you; just remember the lessons you learned from it." Marianne Williamson

Pain

"Pain can burn you up and destroy you, or burn you up and redeem you." Marianne Williamson

As I approach the eighth decade of my life, I can attest that one will encounter pain in life.  It just seems part of the package.  In A Course of Miracles it says that it is not up to us what we learn, but merely whether we learn through joy or through pain.  In my own life I have not found it as easy as just deciding to learn through joy, but I do think it is important to be willing to learn through joy.  It seems to me that Life will present our lessons to us in the manner in which we will most quickly "get the lesson" - whether that path be pain or joy.  There is much in living with dementia that can be painful.  Funny; it is often the little things -- like never knowing that what I place carefully in a spot so that I can find it, will ever be in that spot when I want the object.  It is important, I think, in living in any difficult life situation, that we focus on what is joyful.  And that we learn from the pain and the joy that we encounter.    

Being present

"The past is not dead.  In fact, it's not even past." William Faulkner.

If one reads self-help literature at all, one cannot avoid the advice to live in the present.  In listening to a Marianne Williamson tape in the car, she said the reason God does not reveal the future is because there is only now.  hmmm   Hard to get my mind around.  How much of your time do you spend regretting something in the past; or dreading or imagining something in the future?  What if the future is completely dependent upon the choices we make in the now?  A better way, I might suggest, is to grieve and make atonement for the mistakes of the past; to focus our attention on the present and make the best possible choices here; and to trust that the future will unfold naturally from the choices we make right now.  Perhaps our only task is to be aware of the present and to enjoy it.  Now.

Love or fear

"In every moment we get to choose whether to act out of love or out of fear." Marianne Williamson

Several notable thinkers have said similar things.  They suggest that there is only love (Spirit) or fear (ego), and that we get to choose in each and every moment from which place we will respond to the situation.  I have spent some time in fear, and I can attest that it is not a powerful place from which to choose.  What if it is just a matter of choosing from which place we will make our decisions and our choices?  What if we can simply choose to choose to act from love?   I think it may be that simple. 

Life's ups and downs

"But the point of a life journey isn't whether or not we've fallen down; it's whether or not we've learned how to get back up." Marianne Williamson

I was speaking with someone recently who had a very public professional betrayal.  He seemed comforted by my belief that each and everyone of us will experience some stumble like this in our lives.  His would be the more difficult because of its publicity, perhaps making him think he is alone in the stumble.  But, Marianne Williamson says that most of us by the time we are in our 40's have had at least one or two major life upsets.  I think living with dementia is another life upset.  So, since we all have the falls, the issue is how do we get back up?  How do we get back up from the betrayal, or the health issue, or the financial reversal?  In listening to a tape of Marianne Williamson, she suggests we do it with graciousness.  And, graciousness can be accomplished by practicing it.  In what way can we be gracious today?

Evaluating life

"Take a good look at your life right now.  If you don't like something about it, close your eyes and imagine the life you want."  Marianne Williamson

The sentence above is taken out of a visualization Marianne Williamson is suggesting.  She suggests that if we don't like something about our lives, we can imagine/visualize how we would want to be; get in touch with how we would feel and behave in that preferred life - thus helping to imprint onto our subconscious the way of life we prefer.  You may be dubious.  Can it be as simple as that?  A number of current thinkers suggest it is, and what do we have to lose?  I suggest you and I try it for the next seven days.  It might be a good way to counteract the 'imprisonment' feeling that can accompany caregiving.  I hope so.

Perfection

"God's works are so secured by an all-encompassing plenitude that no created thing is imperfect." Hildegard of Bingen

One of the great mystics.  If she came to an understanding that all of life is perfect, then who am I to argue?  That would mean that I am created perfectly, as are you.  It would also mean that the dementia with which we live must be a distorted view of perfection.  Katherine Saux writes that the imperfections that we see (wars, pollution, crime -- and I would add; illness - like dementia) are distorted forms that have accumulated over eons of wrong choices.  hmmmm   Then, it would stand to reason that one way to deal with these distorted forms is to set our vision on the perfection beneath what appears to be imperfect.  For today let us choose to see the perfection of Spirit in ourselves and in all other people and things.  My sister who was here recently commented on my speaking to inanimate objects (my dishwasher, etc.); but, what if no object is really inanimate?  That is a consideration.  And, all is perfect:  despite some other appearances. 

Life as spiritual practice

"My miraculous power and spiritual activity:  drawing water and carrying wood." Layman P'ang

Quotes like the above always make me smile as they help me remember that spiritual practice is not just prayer and meditation, but spiritual practice is in our life activities.  Activities like counting out medication, or like having cousins for dinner and one decides to stay the night because of winter road conditions - making an opportunity for a slumberless party, or putting out the garbage to be collected.  Life is richer when we see that each and every activity provides us an opportunity to do it as if it were prayer.  And what does that mean?  I think it means being fully present to the activity, doing the activity with serenity, avoiding negativity, and knowing that no task is too small to be done with graciousness.

Senior airfare

Senior airfare discounts aren't extinct, but they certainly can be hard to find." AARP

I was not even aware that one could get senior discounts on airfare, and not all airlines offer it.  If you plan to get away on one of your respites by air, it might be good to know that Southwest offers senior discounts on all domestic routes.  United, American and Continental offer senior discounts on select routes. 

With the cost of medications, etc., it is prudent to save money where we can. 

Time out of society

"Life does not have to be whitewashed in order to be beautiful." Emmanuel

The isolation of being a caregiver is one of the hardest aspects.  I was talking with a fellow caregiver recently, and she quoted another caregiver of calling her caregiving time, "Her time out of society".  That really rang true for me.  Home health aides cancel coming, and then there is the reality of how much harder it is to go anywhere and take the person with dementia.  It takes far longer, is more encumbered, and one has to be alert for their safety.  So, sometimes, the simplest answer seems to be to just stay home.  If that is the case, then it helps us to be aware of the truth in the above quote.  Perhaps not everyone is familiar with the concept of 'whitewashing', but it was done before paint was as available to beautify and preserve walls and buildings.  Our life may some days not seem beautified by ease of exterior circumstances, but it is important for us to look for and see the beauty. 

Truth

"Men occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing had happened." Winston Churchill

Well known for his wit, Churchill seems in form in the above quote.  The reason it brings a smile to my face is that I can resonate.  I have noticed in my life that it takes courage for a person to really take a look at the truth. That is one function of denial; to support people until they are ready to face the truth of their situation.  The problem can occur when people do not move out of denial.  So, what does it mean to face the truth?  It means to look at things realistically.  In the case of us who provide care for someone with dementia: it can mean that we face the fact that the person for whom we provide care can no longer be expected to do some of the things we think they "should" be able to do.  It means not hiding from life circumstances; taking off our rose colored glasses.  This does not mean, in my opinion, that we become jaded or negative.  It means only that we objectively assess our life situation and stop kidding ourselves about it.  Then we can take appropriate action.

Responsibility

"I accept my responsibility to think rightly about myself, my fellowman and the world in which I live." Ernest Holmes

What if we consider that having positive thoughts is our responsibility; not just a choice?  What if the world is a different place depending on the quality of our collective thoughts?  I know that my own personal space is different when I remain in peace and joy.  The past week I have felt despondent because of some environmental factors, and that affected the quality of my life and - I think - the lives of those with whom I interact.  So, I claim that it is not just an exercise for me, but a responsibility I have to my fellow humans/plants/animals and planet to think rightly.  Rightly for me means being at peace, in joy and truly wanting the best for myself and all others.  In this holiday season it seems an appropriate practice. 

Keeping our word

"Keeping our word is the alchemy to becoming free and whole." Tukaram

Is it easy for you to keep your word?  I confess that sometimes I glibly say I will do something, and then I change my mind.  It seems the person we may be less likely to keep our words to is ourselves.  We might say, "I will lose 10 pounds, I will limit my alcohol to 1 drink, I will exercise every day, I will not judge others." and then the time arrives and we don't feel like taking the action.  It seems to me it is important that we know we can count on ourselves, and in what ways do we do that?  Mostly through honoring our words and following through on behavior (the action step).  We are human and temptation seems part of that condition, so perhaps a way we might think of this is to be thoughtful about giving our word - to ourselves or anyone else.  We might consider:  Do I really want to do this?  before we say we will.  Another way to keep our word according to research is to share with someone we can count on to support us what our goal is.  It is more likely we will keep our word about the goal if we have some social support to do so. 

Integrity

"Nothing is at last sacred but the integrity of your own mind." Ralph Waldo Emerson

Emerson's mind is a mind I have always admired.  His way with words.  His wisdom.  His words stretch me, like the quote above.  This quote is from his Self Reliance essay, and he may have been emphasizing the power our minds (our thoughts) have over our destiny.  Buddha and others have said similar things; that we benefit from controlling our thoughts.  One definition from the American Heritage Dictionary for integrity is purity.  How can we keep our minds pure?  One way is to avoid negativity in any form:   negative self talk, gossip, judgment, fear, limiting thoughts.  I wonder how much different our world would be were everyone to strive to think only thoughts that contained the highest and best for themselves and each other.  Perhaps you and I can start an experiment and see how different our own worlds become from that practice.  I am willing.  Are you?

Love

"No loving gesture has ever failed to leave its mark in the world."  Katherine Saux

Yesterday I was talking with my spiritual director, and he said he thought the ultimate purpose in life was to return to love and joy.  I think he is right.  Whatever our situation is, it is our task to return love and to be in joy and in peace.  Being a caregiver for dementia can be a trial for returning to love, but if we are honest with ourselves, so can a lot of other situations in life.  I think it is important that we provide ourselves enough breaks from the tasks and responsibilities of caregiving, so that we can enjoy and emanate love and peace.  Have you ever stopped to consider what this caregiving has to do with you?  Is there any purpose whatsoever in it for you?  I think we can use this task of caregiving to grow more mature in our spirituality, and one way to do that is to practice love and peace and joy.  Respite for ourselves is one way to return to love/peace/joy, and so is levity.  I laughed out loud with my daughter on the phone this morning, and that laughter and connection helps me to return to love and peace.  What connection helps you in that way? 

Chocolate

"Just one daily dose may lower blood pressure, cut stress, reduce stroke risk -- dark chocolate and unsweetened cocoa powder." Prevention Magazine Dec. 2011.

Well, if anyone ever needed an excuse to enjoy chocolate!  As dementia caregivers, it is important for us to implement into our lives ways to handle the stress of the amazing amount of responsibility, frustrations and work of caregiving.  Small amounts of chocolate is one way to support ourselves.  One of my favorite treats is dark chocolate-covered almonds.  Yum!  Along with good nutrition, exercise, meditation, fun, prayer, healthy social connections, and activities that stimulate our intellect, this is an easy  - and delicious - stress-reducing addition. 

Live in the present

"Unease, anxiety, tension, stress, worry — all forms of fear — are caused by too much future, and not enough presence. Guilt, regret, resentment, grievances, sadness, bitterness, and all forms of nonforgiveness are caused by too much past and not enough presence."  Eckhart Tolle

Angela Lunde of the Mayo Clinic echoes what Eckhart Tolle says, "Alzheimer's caregivers can find the gift of living in the present by dwelling less on the past, worrying less about the future."  And yet perhaps the reason we are told so often to live in the present is because it is hard to do.  I find myself sometimes thinking: when in the past was my marriage relationship even remotely balanced, with him doing part of the care giving?  I also find myself fearing the future:  How am I going to continue to stand to do this?  Neither of these ways of thinking is beneficial for me.  I will intend again to stay just in the present, and not allow thoughts of regret, resentment, or fear cloud my day.  How about you?

Planning

"The luxury of planning.  Planning the flow of each day for one full week." Lalita Tademy

I am reading a novel, Cane River, by the above author - a well-researched book about slavery and the author's family.  Things I had never considered:  what an anomaly it was for slaves to have time they could call their own (the time between Christmas and New Year's).  It gave me pause, and it made me realize that is part of what caregiving brings us too:  deprivation of planning our own life.  Some days I only have the energy for the many tasks:  dishes, meals, shoveling, plowing, paying bills, managing medication -- that I yearn for time and the freedom to plan my own life and how I would like to spend my time.  Next week my sister is coming again, and I will have a 3 day retreat in which I intend to do just that.  How can you fit time into your schedule to reflect on and plan your life? 

Breathe

"Doing this (this breathing exercise) will induce a feeling of serenity," Dr. Andrew Weil

We hear it from a lot of places:  breathe.  We are told breathing supports our physical, emotional, intellectual and spiritual selves.  It would seem that breathing correctly would be inherent for us, but some suggest it is not -- or, perhaps more correctly, some suggest that living with stress impedes our natural ability to breathe deeply.  Dr. Weil suggests a daily exercise of what he calls "4-7-8" breathing.  The steps are:
1.  Rest tip of tongue on roof of mouth
2.  Exhale completely through your mouth with lips slightly pursed to make a whoosh sound.
3.  Close mouth and inhale deeply and slowly through your nose to a silent count of 4.
4.  Keep mouth closed and gently retain your breath for a silent count of 7.
5.  Exhale slowly through open mouth for count of 8, making the same whoosh sound.
6.  Repeat for a total of 4 breaths twice daily.

In this task of caregiving - or in any stressful life situation, this breathing exercise could be an important and easy tool of support. 

Impermanence

"There is a difference between impermanence and fragility." Rachel Naomi Remen, MD

Let's be honest:  sometimes it seems as if we have been doing this caregiving forever -- with no end in sight.  I certainly feel that way sometimes.  This is a good time of year to notice that nothing is permanent - to include our caregiving.  The shortest day of the year is coming up for us in the northern hemisphere.  It is snowing here today, but even at this high altitude, I can be assured it will not snow like this next July.  It is easy to get bogged down in the tasks of life in caregiving.  I think it is important for us to step back and look at a bigger perspective.  How will our life be when this caregiving task is over?  Because, assuredly it will be over. 

Forgot to pay taxes

"Our brains simply are not suited for the modern world." Dr. Andrew Weil.

While Dr. Weil is speaking of living deprived of nature, I think the quote applies to us who are caregivers for dementia too.  I forgot to pay our property taxes.  Not just for this last half of the year -- for the whole year.  Amazing!  It is a very reliable way for me to know that I am overloaded, as it is most unlike me to forget such things.  It seems I spend my days trying to track down one of Dwane's prescriptions (the highly controlled one for his narcolepsy -- a medical condition in addition to his dementia), or paying the bills for our household, or cooking/cleaning/shoveling/plowing/laundry chores.  It is hard to even try to carve out some time for my own personal and professional life.  This is also the time of year when getting out in nature is harder.  It is very slick here, ice covered with snow.  Next week I have planned for myself an individual retreat, while my dear sister comes to stay with Dwane.  I plan to use it to review my life, my choices and to replenish myself. 

What can you do to recharge your batteries --- especially in this busy holiday season?  

Avoiding depression

"Behaviors strongly associated with depression -- reduced physical activity and human contact, overconsumption of processed food, seeking endless distraction -- are the very behaviors that more and more people now can do, are even forced to do by the nature of their sedentary, indoor jobs." Dr. Andrew Weil

As caregivers for dementia, there is danger that we are existing in fertile ground for depression.  I don't know about you, but I have reduced physical activity (even with my discipline of daily exercise), decreased human contact (except with the person with dementia), and I sometimes out of exhaustion rely on processed foods (although not very often).  It is very challenging to do this task without feeling overwhelmed and/or depressed.  Dr. Weil says in a November 7 & 14, 2011, Newsweek article that we humans thrive in natural environments and social groups.  Two of the things which are harder to enjoy as caregivers for dementia.  He goes on to say that we are suffering from nature deficit; while experiencing information surfeit.  He recommends as a remedy setting limits for how much time we spend on the internet and with email.  Good suggestion. 

Brilliance

"What does what I say, say about me?"  Jack Sacco.

We are probably all familiar with the old saying that people with brilliant minds talk about ideas, people with average minds talk about things, and people with dulled minds talk about other people.  I am sure we have all been in a group where someone is talking too much, too loud, too long.  Perhaps that person has even been ourselves.  Gossip - talking about other people - can be a very intractable habit.  But, who would we rather be considered?  Someone with a brilliant mind, an average mind or a below-average mind?   Research suggests that habits can be easily changed.  All is takes is a commitment for 30 days, and that new behavior becomes a habit.  Along with the gratitude writing exercise, can we also incorporate the new practice - for 30 days - of not talking about people?  Let us practice instead talking about ideas.  What ideas do you have for making this caregiving task an easier one for you? 

Uphold dignity

"Uphold the human dignity of every single person, no matter what their race or beliefs might be." Monsignor William O'Connell

I have had the good fortune of knowing the man quoted above, and he did, indeed, live by that quote.  While he was speaking of racial differences and social/economic inequities, we can apply the same quote and attitude to persons with dementia.  I have spent a significant amount of my life energy advocating for those with intellectual and learning differences:  not unlike what we are now experiencing in being caregivers for someone with dementia.  Let us vow to treat the person with dementia, and all persons -- to include ourselves, with dignity.  A definition in Webster's for dignity is worthy.  Let us consider that every person, including ourselves, is worthy of respect, kindness, tolerance, and inclusion.  What does treating someone with dignity mean for you?  How can you treat yourself with more dignity?  For me, I can recognize my limits, I can ask for help, I can take care of my own health, I can make sure I have fun. 

Self pity

"If you go around in a mood of feeling sorry for yourself, you will go around alone." Peppermint Patty character of Charles Schulz

I have always loved the wisdom Charles Schulz displayed in his characters in the comic strip, Peanuts.  We watched, "Snoopy Come Home", last night and the above quote is from it.  The wisdom:  if you go around feeling sorry for yourself, you will go alone.  Isn't that the truth?!  One might think it is easy to feel sorry for onself and to feel burdened by the caregiving of someone with dementia.  But, really, what good does that do anyone?  A friend said to me recently that I do not talk much about my caregiving situation.  She is right.  I don't talk much about it.  Frankly, that would depress me.  Instead, I focus on what is right in my life, the things for which I am grateful.  How are you coming on the practice of writing 5 things in the morning about which to be grateful and 5 things at night about which you were grateful during that day?  Eugene D. Holden says it will transform us.  I am ready to be transformed.  How about you? 

Gratitude and joy

"As we practice gratitude for all needs met, in spite of appearances, we cultive a deeper sense of joy."  Eugene D. Holden

Mr. Holden seems to suggest that we express gratitude, even when what appears in our physical surroundings would not seem to support that.  Perhaps in being a caregiver for dementia, one might think that there is not sufficient reason for gratitude; but, really, is feeling sorry for oneself a better option?!  Happiness tends to depend on outside circumstances, but joy arises from within us.  And joy can be cultivated.  One of the ways to cultivate joy is by practicing gratitude. 

I watched a TED video with my daughter recently, and a monk on the video suggested that the only appropriate response for this (or any) day is gratitude.  Might our lives be better if we adopted that philosophy?  I think mine might. 

Gratitude for all

"Gratitude is a spiritual practice that allows us to be grateful for life. Gratitude is a consistent practice that flows in the wisdom of the world."  Eugene D. Holden

It may seem that gratitute is easier sometimes than others; when things are going very well, it is easy to express gratitude.  But what about the times when things are not going well?  How easy is it to be grateful then?  Eugene D. Holden suggests an exercise to develop our 'muscle' of gratitude.  It is:

For 7 days, every morning write five things for which you are grateful.  At night before you go to bed, write down five things for which you were grateful that happened that day.  He says that your life will begin to transform by practicing gratitude, and that this is an excellent practice to develop gratitude. 

Awake

"And as we let our own light shine, we unconsciously give other people permission to do the same." Marianne Williamson

The ballet, Sleeping Beauty, made me think of what some psychologists believe:  that great myths and fairy tales are so enduring because they speak to us deeply - in our psyche.  The young princess falls asleep to her life, and is awakened by the love of another human.  Can't we see ways in which this enduring theme has played out in our own lives?  Can you think of a time you have loved another in a way that allows them to be more fully themself?  Or perhaps you have received the type of love.  I did long ago from a beautiful therapist and friend.  Perhaps it is true that we cannot fully awaken to all we can be without the unconditionaly love from another person.  Can we be the person who provides that love today?  Is there a way, in the role of caregiver for someone with dementia, that you can love unconditionally?  Who knows what results such agape love might have. 

May you have the blessings of a good life on this Thanksgiving Day. 

Playing it small

"Your playing small does not serve the world.  We are all meant to shine.  We were born to make manifest the glory of God that is within us." Marianne Williamson

Sunday I went to see the Bolshoi Ballet's production of Sleeping Beauty.  For the first time ever an American was a lead dancer, and the review I read said he and the prima ballerina danced elegantly.  David Hallberg chose not to play small.  From perhaps unlikely beginnings, he danced with one of the most famous ballerinas in the world.  Good for him.  Prima Ballerina Svetlana Zakharova was exquisite.  She has not chosen to play it small.  Perhaps it is harder to see in our own lives if we have played it small.  Most of us are not world renowned or among the world's most successful.  But that is not the point.  Have we shone in our own lives?  Have we played it big in the small worlds in which we live?   A question to consider. 

Fear

"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure."  Marianne Williamson

What if the above quote is true?  What if we fear success more than failure, personal power more than weakness?  Let's assume for a moment that it is true that we fear being our most powerful.  Then, perhaps, the best thing for us to do is to dare to become our most powerful.  How would your life be different if you chose to your absolute best self?  I believe that I would risk more, experience things more deeply, and not settle for less than what I want. 

Today let us think about being our most powerful self.   Now, let's actually live from our power.  What is there to lose?

Willingness

Become willing to express your highest and best regardless of the circumstances," Eugene D. Holden.

A dictionary definition of willingness is "freedom from reluctance, readiness of the mind to do or forebear."  Being a caregiver for someone with dementia provides a perfect circumstance to express our highest and best in spite of the circumstances.  And how do we do that?  By being kind and gentle to ourselves, the person for whom we provide care, and all others.  Can we do this 100% of the time?  I'm not sure that is humanly possible.  While I know I mostly express my highest and best, I do sometimes lose patience, become frustrated.  Perhaps the key is to "become willing".  We can each certainly do that. 

Sleep problems

"Many older adults have probelms sleeping, but people who have Alzheimer's often have an even harder time.  Alzheimer's may reverse a person's sleep-wake cycle, causing daytime drowsiness and nighttime reslessness.  These sleep disturbances often increase as Alzheimer's progresses."  Mayo Clinic Staff

People with Lewy Bodies Dementia often have an added sleep problem, REM sleep disorder.  This is part of the classic symptoms of LBD.  It occurs when the person acts out their dreams.  They can scream, thrash, and even get out of bed and run.  We have had great success with Clonazepam, which is what the Sleep Clinic at Mayo Clinic prescribed for Dwane.  If you are providing care for someone with LBD, I strongly urge you to get some good assistance from someone who has experience with sleep disorders and dementia. 

Emerging problem

Says Dr. Petersen: "When the baby boomers reach the age where they are at risk for Alzheimer's, which is not too far down the road, it's going to become a huge public heath concern. And it's not something we can wait to study when it happens. We have to anticipate it and try to prevent it. Otherwise, with millions more people who have cognitive impairment and dementia, it's going to be an enormous health care problem."


It is said that the Baby Boomer generation has changed systems throughout their lives, and now will change aging.  Hopefully, the emerging problem of thousands reaching advanced years will positively impact research.  It is something that we, as caregivers, might want to keep an eye on.  Let us hope there is hope on the horizon.

Early treatment

"It's important to get a prompt diagnosis, because the earlier you start treatment, the more effective it can be." Robert Stern, director of Boston University's Alzheimer's Disease Center Clinical Core.

Current research is being done to develop medications that slow or stop dementia, rather than temporarily treating the symptoms as current drugs do.  According to Stern, these drugs could be available within three years.  If interested, you could enroll in a clinical study.  For a list of trials with these medications, contact:   www.alz.org/trialmatch

You could be part of a cutting edge breakthrough.

So, what is normal forgetting?

"Misplacing your car keys is normal.  Failing to remember standing appointments or becoming confused in your field of expertise is not normal." Beth Macy, Parade Magazine November 13, 2011

Ms. Macy goes on to say that occasionally forgetting to pay a bill on time is normal; while losing control of the finances is not normal.  Having trouble summoning the right word is normal; while repeatedly losing the tread of a story or conversation is not normal.  Needing help setting up a dvd or computer is normal as we age; while becoming disoriented in a system once mastered is not normal. 

As I look back on our three years since the diagnosis of Lewy Bodies Dementia, I can see examples in each of these areas.  Dwane is perpetually confused with time in general, what day it is and when we might have something scheduled.  A first occurrence for me of concern was when he forgot how to put gas in the car; when he had worked in a gas station to pay his way through school -- and of course, has done it on a regular basis since self-serve was eliminated.  He also lost all ability to get finances straight, and I find in conversing with him, he often loses some important aspects of the conversation or the story line in a movie.  He used to record movies for his history classes, and now has trouble working the remote to turn on the television.  The examples Ms. Macy provides are excellent markers for when to be concerned about cognitive functioning.

Could it be Alzheimer's?

"The disease can take longer to diagnose in midlife because other health issues that can cause similar symptoms (such as thyroid disease, vitamin B-12 deficiency or depression) must be ruled out first," Beth Macy for Parade Magazine November 13, 2011.

A good article in Sunday's Parade Magazine.  The article gives examples of what is normal forgetting and what is not.  The article also recommends that a person, for whom there is memory or cognitive concerns, receive an evaluation from a physician or a memory care specialist, such as geriatrician, neuropsychologist, neurologist or geriatrics-trained psychiatrist.  These specialities may not be available in all areas, and I personally recommend a neuropsychological evaluation by a neurologist.  It is important to rule out medical causes first (such as the thyroid disorder, etc.), but then I think it is imperative that the person take a battery of neurological/psychological tests.  The information gleaned from this testing will inform the caregiver which parts of the brain and cognitive functioning are more and/or less intact.  Very valuable information when one then sets up an environment to support the independence of the person with dementia. 

Wisdom and gratitude

"After we leave school, we tend to head down one of two roads: 1.  We close our minds to new or different information while becoming more and more sure of ourselves; or 2. we watch, listen, and learn as we get older.  The second road has way more bumps and curves, but it's also the path to wisdom." Marilyn vos Savant.

I so agree with Ms. vos Savant's quote above, and it helps me understand some aspects of people.  I wrote another time that some members of my family appear to consider their opinions as facts.  Perhaps the reason for that is they chose to take the first road.  I am so grateful that life or Grace has helped me take the second road.  I love to observe and learn new and better ways of being in the world.  I am happy to give up a well-entrenched belief if I see evidence to its contrary.  I went to a speaker last night who said that the only way to develop consciousness is to let down the walls of our beliefs.  Perhaps that is true.  It seems to me that it is true that to develop spiritual and emotional maturity, we need to be willing to reconsider beliefs passed down to us.  Perhaps they are not what we ourselves truly believe.  Life is so interesting when one watches, listens, and learns.  Which way works best for you?  I choose the path to wisdom.

Truth and gratitude

"Truth is Reality beyond perceptual experience." Dr. Libby Adams

Truth is an often misunderstood quality.  A well-known Bible verse tells us that the Truth will set us free.  And, probably all of us have seen the quality of truth misused to advance someone's personal agenda.  Things some humans have thought over the years were true have turned out not to be.  Such as, the world is flat, the earth is the center of the universe, unaffectionate mothers cause autism, one race or gender is more intelligent or more worthy than another.  So, how do we know what is true?  It may be different for everyone, but one way to find truth is through meditation.  Meditation practiced will enable us to discern the voice of Wisdom from our own ego's voice.  Perhaps truth might be the upholding and honoring of every form of life.   What is your truth?  Your compass point?  What is your truth in being a caregiver for dementia?  I am determined to be a caregiver creating an atmosphere of respect and well being -- for us all.  That is a Truth for me.

Change as gratitude

Change your thinking, change your life." Eugene D. Holden

Change is something that humans may fear, and, indeed, there is security in the known -- even if the known is not optimal.  Others, perhaps those who venture to new lands, thrive on change.  I sometimes think about how different my life would be had it not been for my ancestors leaving the mother country.  They must have been an adventurous lot, as ocean passage in those days was arduous and dangerous.  I know I have some of their spirit in me, as I love change, and I am continually looking for better ways of doing things.  I was talking with a friend yesterday who said she can only stand to do something - like be in one job - for about 5 years.  I can resonate.  I believe that change is inevitable, so we can either embrace it or try to flee from it (and that will not work).  We don't even need to change jobs or relationships or geographic locations; perhaps all we need to do is change our thinking.  We can choose to think more positively.  My daughter asked me how I was doing so well in this caregiver role, and while I am sure it is due to a number of spiritual practices, I know it is also because I choose daily, even moment-to-moment, to change my thinking if it is not serving me. 

Today how can your thinking better serve you in the life you are living?

Love as gratitude

"Ghosh trusted me to do whatever it is I would choose to do.  That, too, is love." Abraham Verghese

I have finished the book, Cutting for Stone, by Abraham Verghese.  What a delightful read.  Full of passion, pathos, intrigue.  The above sentence captured me.  It is what I tried to do as a parent:  trust my children to do whatever he or she chose; knowing it would be what is best for them.  It would seem it is the love that the Divine must have for us; exampled in our freedom of choice --- which we exercise sometimes in our best interest and sometimes not.  So, today, I am grateful for all the people who have loved me enough to trust me to do what I choose to do at any moment.  And, I thank God for the grace to extend that level of love to others.  Even in being a caregiver for someone with dementia, there are many ways we can trust the person to choose rightly.  Perhaps our task is to discern when to intervene and when to trust.

Gratitude for freedom

Veteran's Day

Today I am grateful for my son and all the others who have served our country and our way of life.  In the case of my son, I was always grateful for the wisdom, integrity and good energy he brought to that service.  When he retired from the military, he said that my daughter and I had always provided light for him and the world.  What a lovely, lovely compliment to us both.  So, too, does he.

So, for all the men and women who have served to enable us all to have a safer life, a life more full of freedom:  I thank you.  I am so grateful.

Gratitude as intention

Intentions keep us focused." Eugene D. Holden

Some people dear to me express their amazement at my discipline in writing these daily blogs.  It is part of my intention in how I want to be within this caregiving task.  I want to do it graciously, and writing this blog daily helps me to do that.  I also know that knowledge is best shared, and this blog is a way to share reliable and helpful information.  I spoke with my spiritual director yesterday and we spoke of a way to pray:  he suggested the steps:  believe, claim, and give thanks.  It seems that the gratitude piece is an important step.   So, we can set the intention for how we want to be in life or in a particular situation like caregiving, and that intention helps us be and do what we intend.  And we can give thanks. 

Irony

"Death is the cure of all disease." Abraham Verghese

It seems that we humans try to avoid disease, although some of us are reckless in our behaviors, as if we were invincible and will not succumb to any disease.  I think we also fear disease, as the funny quote of Woody Allen would imply, "I don't fear death; I just don't want to be there when it happens."  It is funny because we can relate.  Death in the abstract is not scary.  Death in the form of a debilitating disease can be scary.  Dementia is a debilitating disease; and, while we are providing care for someone with dementia and busy doing it, we may not have time to contemplate that this is a disease that will end with death.  Probably not actually caused by the dementia; but by a dementia-related cause.  There is currently no way out of this disease except death.  Let us honor that, respect the days we have, and take good care of ourselves so we, too, do not succumb to this disease. 

Discipline

"Without discipline, there is no life at all." Katherine Hepburn.

It seems to me that the word, discipline, is sorely misunderstood.  Some adults use punitive measures with children or other adults and call that discipline.  It is not.  I once read that the root word of discipline is disciple, which means to teach and lead.  That is the type of discipline we can implement in our role as caregiver.  Teach, guide, model the behavior we want; and set up the environment to support the behavior we want.  Discipline is also a term we can apply to ourselves, and that is what Katherine Hepburn seemed to mean.  We can have the discipline to always be kind, to eat foods which are good for us, to exercise. 

With others and with ourselves let us celebrate and implement good discipline, and let us be grateful for the results.  Discipline, rightly done, does produce results -- of that we can be certain.

Gratitude

"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them." John F. Kennedy

This is the month that some countries celebrate the holiday, Thanksgiving, and it seems like a good time for all of us to remember to be grateful.  A friend recently wrote that she was feeling some negative feelings about driving early in a large city when she looked around her at examples of people who were homeless, and this shifted her attitude to being grateful for all she had.  Any one of can look around and be grateful for what we have.  Even in the role of caregiver for someone with dementia, we can see people who have it worse; far worse, actually.  So, today what is one thing for which you can be grateful?  For the month of November let us each day think of a new thing about which to be grateful.  Today my one thing for which I am grateful is that I am going for a walk with my daughter. 

Action

“Don’t hope – decide.” Tsering Dokkar Sherpa

In my years in psychological practice, it seems that the thing that keeps people mired is their lack of action.  They stay in the mulling, considering, hoping; and do not move to action.  A very wise therapist taught me that there are always at least three options in any situation, and I think she is right.  So, when faced with a dilemma or any decision to be made, think of at least three options.  Choose the one that seems best to you, which may mean that it is the one with the least negative consequences.  And, act on that choice.  That is the path to good mental health.  Think of at least 3 options, choose among them, and act on the one chosen.  If, at any point you feel you have taken the wrong path, repeat the process of thinking of 3 options, choosing one, and acting on it.  An easy technique for better mental health. 

Omissions

"Not only our actions, but also our omissions, become our destiny." Abraham Verghese

I have been reading a delightful novel, Cutting For Stone, by the above author.  Although fiction, it is based on his experience in Ethiopia and the U.S.  The above quote is such a good reminder for us.  Whenever we make a decision, it is inevitable that other options are ruled out:  they are omissions.  And, as such, omissions shape our destiny just as actions do.  So, it is prudent that we choose carefully.  In our roles as caregivers and in life in general, it is wise to prudently choose among our options -- because both the choice and the omissions shape our lives. 

Resource

" HABIT stands for Healthy Actions to Benefit Independence and Thinking. HABIT doesn't cure those patients with memory loss who participate. Instead, the program offers several tools unique in addressing the condition of mild cognitive impairment and caregiving." Mayo Alzheimer's newsletter.

If anyone lives near the Minnesota Mayo Medical Facility, the above program sounds promising.  It sounds like it helps to create an environment in which problems are eliminated/lessened -- what I aim to do through knowledge of behavioral management.  Any ways in which we can enhance our skill level and prevent problems is optimal, and this program sounds like an avenue to accomplish that. 

"HABIT is a 50-hour program for individuals recently diagnosed with mild cognitive impairment and a program partner. It's offered several times each year on the Mayo Clinic Campus in Rochester, MN. To learn more about the HABIT program go to": http://mayoresearch.mayo.edu/alzheimers_center/habit.cfm

Accomplishments

"I have the right :  To take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one."  Jo Horne's Caregiver's Bill of Rights        

And, I would add, the courage it takes to meet our own needs within the caregiving role.  I have felt as if I have a virus or sinus infection stalking me.  Low energy, congestion.  And, just like when I had small children, there are still meals to prepare, other tasks - despite not feeling optimal physically.  Even in the best of health, caregiving is taxing.  So, let us take pride in how well we take care of the needs of our self and the person for whom we provide care. 

Individuality

"I have the right:  To protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time help." Jo Horne, Cargiver's Bill of Rights.

Have you ever thought what your life will be like once you are no longer in this caregiving role?  Perhaps, like me, you sometimes even have trouble imagining a life after this.  But, we will have lives that continue, unless we are part of the 1/3 of the caregivers that die doing this task (according to research at the Roslyn Carter Institute).  The intention of this blog is to help us NOT be part of that percentage.  So, let us today consider:  what will my life be like when I am no longer caregiving?   Let us plan to have a life we can anticipate with pleasure. 

Taking care of yourself

You really need to take care of yourself because you won't be good for anyone else unless you take care of yourself.
-- Harry Bartholomew
The 5th right in Jo Harne's Caregiver's Bill of Rights is:  "I have a right to reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, anger or depression."  This is a particularly good one for me, as my upbringing trained me to be suceptible to feeling guilty if I displease someone.   And, let us not fool ourselves, the person with dementia is capable of using manipulation to get us to do what he or she wants!   Dwane has sometimes used our wedding vows as a reason why I should enable him to stay home by providing caregiving; which is amusing when one considers aspects of his own history. 

I am providing caregiving because I think it is the right thing for me to do in these circumstances for now.  And that is the only reason I am doing it. 

Please do not allow the person for whom you are providing care manipulate you into thinking you have to do any aspect of this caregiving. 

Express anger

"I have the right:  To get angry, be depressed and express other difficult emotions occasionally." Jo Horne's - Caregiver's Bill of Rights.

Let's be honest:  Caregiving for someone with dementia is challenging; beyond the capacity for humans to always be understanding, patient, mellow.  We will get angry.  We will feel depressed, overwhelmed, under appreciated, over taxed, impatient.  And, that is okay.  It is more than okay; it is healthy.  Feelings are neither good nor bad; it is how we express them that makes the difference.  It is not only bad style, it is immature and nonproductive, to yell or use foul language at the care receiver.  Some disciplines advocate yelling into a pillow or some such technique -- scream therapy.  I am not sure that it is therapeutic.  Sometimes mad just brings on more mad.  But, we will be impatient and frustrated; and that is really okay --- as long as it is a minor percentage of the time.  If we are feeling negative feelings more than just a very minor percentage of the time, it is not good for our own mental health nor the health of those around us.  In that case, seek professional help.  But, for occasional mood upsets, let us just be gentle with ourselves.  This is an almost-impossible task; this caregiving.

Happy Halloween.  I hope yours is spooktacular -- full of only very good things.

Maintain my own life

"I have the right:  To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy."  Jo Horne's Caregiver's Bill of Rights

This is a good one for me to remember.  Before the dementia, Dwane and I led very different professional lives.  I put aside my psychological practice, to a large degree, to provide care for him.  Before the dementia, I went to workshops, conferences, and to see my own children - on my own.  I must not let him make me feel guilty (number 5 of the Bill of Rights) for doing so now.  I have a right to my own life.  My only real responsibility to Dwane is to see that he is safe and has the best quality of life possible under the circumstances. 

Today I fully reclaim my right to my own life -- separate from being a caregiver. 

Seek help from others

"I have the right:  To seek help from others even though my loved one may object.  I recognize the limits of my own endurance and strength."  Jo Horne's Caregiver's Bill of Rights.

This is probably the area of greatest stress for me in caregiving:  Dwane's resistance to having someone else come in so that I can have a break.  In some ways I can understand it from his perspective, and yet, it seems so selfish of him to expect that I will be here.  It puzzles me that he does not seem to acknowledge that I am not the one with dementia; that I have a right to a life of my own.  Certainly, if our situations were reversed, I am fairly confident that he would not devote himself to my care. 

So, I vow that I will have the breaks I need, while also providing for him the safety he needs.  At least once a month I will have an overnight or two or three -- to get a break from this 24/7 stressful role of caregiving.

Caregiver's Bill of Rights

"I have the right:  To take care of myself.  This is not an act of selfishness.  It will enable me to take better care of my loved one."

A friend sent me the Caregiver's Bill of Rights, taken from Caregiving:  Helping an Aging Loved One, by Jo Horne.  I have not read the book, but I love the Bill of Rights.  My friend recommended I post them and review them daily, and I think I will.  I have found in recent weeks some indications that the stress of this caregiving is affecting my own health, and I cannot allow that.  So, I will put a high priority on taking care of myself.  This friend uses the analogy of putting the oxygen mask first on oneself -- like told to do in an airplane.  So, I put my own oxygen mask on (take care of myself foremost), and then I meet the needs of the person for whom I provide care.

I will cover the other "Rights" in subsequent blogs.

Acts of kindess

"Positive activity interventions - such as performing acts of kindness, counting one's blessings, and writing letters of gratitude - reverse apathy."  Journal of Alternative and Complementary Medicine.

"A simple and non-psychopharmacological way to deal with depression:  random acts of kindness.  The study in the above journal found that depressed people found contentment by doing these simple things.  Let us not forget to extend those random acts of kindness toward ourselves.  It can be very hard being a caregiver for dementia; that is true, but it is equally true - in my opinion - that we can find blessings within the situation too.  Today Dwane shared with me an interesting story that he was reading in the newspaper which I had missed.  A blessing:  both the sharing and the information.  What blessing can you see today in your world?

Mutual benefit

"The better we all do, the better we all do." Liga Masiva coffee label.

Oprah magazine feature the above organic coffee as a "local hero".  Emily Kerr is helping Dominican Republic farmers sell their coffee directly under this label.  I have ordered some to give it a try.  And, I like the label quoted above.  I really believe that the better we all do; the better we all do.  There is plenty of goodness to go around, and if we promote it for ourselves and others, there is even more.  There are probably some of you who are thinking:  what about the horrific news and evidence of tragedy?  And, those events are presented to us seemingly daily; but it is my opinion that we do much better focusing on what is going right in the world.  The kindness of my neighbor sharing her garden produce and giving us a ride to pick up a vehicle from the garage.  The gathering of women yesterday who gathered just to acknowledge and support each other.  What random act of kindness can you perform or see today? 

Breathe

"If I had to limit my advice on healthier living to just one tip, it would be to learn to breathe correctly." Dr. Andrew Weil.

How could we forget something as natural as breathing?  Stress alters our natural breathing patterns; causing us to breathe 15-20 times per minute, instead of the more optimal 5 times per minute.  Shallow, rapid breathing causes our bodies to think we are in 'fight/flight' mode, and stress hormones flood our bodies.  So, as dementia caregivers, one of the ways we can counteract the damage of the stress we encounter in our roles, is to breathe:  deeply and slowly.  Let us stop several times during the day and notice our breathing.  Let us slow it down.  Breathe in 1, 2, 3, 4 and out 1, 2, 3, 4.  An easy way to assist our bodies toward wellness. 

Equal human dignity

"In the middle of the next big crisis, I'm cutting my hair. Believe me, we won't be reading about what war is going on." Hillary Clinton.

A sad commentary on the way women are objectified in the media, as noted in yesterday's writing of the documentary, Miss Representation.  Has a man ever had the physical scrutiny and criticism of media like women often get?  I remember Bill Clinton and John Edwards being criticized for the price of their hair cuts, but not for the style.  Most dementia caregivers statistically are women.  Let us, as women, (and you too men) model treating all humans with respect and dignity.  It is critical for the well being of us all. 

Emotions

"Emotions are among the most valuable teacher as long as we don't try to use them to validate our position and make ourselves right." Dr. Joan Borysenko.

As Dr. Borysenko says, if we never experienced anger, we would not know when our boundaries had been violated.  And, if we never experienced jealousy, we would have little motivation to cultivate happiness at other's good fortune.  Our emotions are invaluable in helping us interact with our worlds more effectively.  And, I think there is truth in the premise that if one cannot allow the experience of what we might call negative emotions, then that person is also limiting the extent he/she feels what we might call positive emotions.  So, today let us rejoice in our ability to feel emotions.  Let us notice what irritates (a lesser form of anger) or angers us or makes us sad.  Let us learn and mature by honoring what our emotions are telling us about ourselves. 

Miss Representation

"When the documentary Miss Representation premiered at the 2011 Sundance Film Festival, audiences were riveted and OWN: Oprah Winfrey Network acquired its broadcast rights.The film explores how the media’s misrepresentation of women has led to the underrepresentation of women in positions of power and influence." Miss Representation website http://missrepresentation.org

Last night we watched the above noted film.  Riveting.  I am of the era of the ERA and Women's Right Movement.  I had as a priority raising my children (a boy and a girl) with the attitude of human dignity for all.  Marlo Thomas's Free to Be You and Me was a favorite in our home.  It was so important to me that my children grew up respecting themselves and others and to develop to their own potential.  This blog is not about touting women's rights (which are really everyone's rights), but it does seem to me that we who are caregivers for dementia might dedicate some of our energies to the respectful treatment of all.  Don't we do that everyday in the way we treat and model how others are to treat the person with dementia?  Let us not forget about ourselves and the treatment we deserve.  Let us be sure to treat ourselves with the utmost respect and to tolerate only that from others.  If interested, you can lend your voice to offset the dehumanizing and violent images to which our youth are currently exposed.  I was motivated to contact my state congressional people. 

Happiness

"90% of happiness is contentment; 10% is joy," Dan Buettner author of Thrive:  Finding Happiness the Blue Zone's Way.

Driving home yesterday I was listening to NPR's interview of author, Dan Buettner.  Interesting.  He said that 40% of happiness comes from one's genes, 15% from chance (like being born with a disability), and 40% from choice.  (I don't know what happened to the other 5%?!)  He also said that people need to experience tolerance, trust, social interaction (6-7 hours each day!), recreation and access to green spaces to support their being happy. 

As dementia caregivers it may very well be difficult to get 6-7 hours each day of social interaction (he said it had to be face-to-face - not media), but surely we can get some social interaction; and we have a lot of control over the 40% that is choice.  What aspect of your life today can you focus upon to support your happiness?  For me, it is a couple of delightful and supportive phone calls, a walk in the lovely autumn air, and a good dinner with local produce (love those farmer's markets!!) to look forward to this evening. 

Other's effect on us

"Sometimes it seems like others have the power to negatively affect your experience, but that is not true." Abraham.

A very interesting thought.  To be so self-contained that one is impervious to the actions, words or attitudes of others.  I am quite certain that you, as caregivers, get feedback (solicited or not) on what you should be doing and how to be doing it.  It is human to think that someone's negative behavior has something to do with us personally; but, consider this:  it does not.  Most times when people are rude, it has everything to do with something about them and very little or nothing to do with us.  That does not include the times we may have actually offended someone, but - usually - their mood is their own sorting out.  So, as caregivers let us be solid in our own grounding, our own integrity, and let us remain unaffected by what seems negative from others. 

Welcome new readers.  I have learned that a dear friend from a past chapter in my life has provided this blog as a program to her women's group.  Welcome.  Social support is an integral part of one's happiness and well being, especially when one is encountering difficulties in one's life.   And, who doesn't experience difficulty in life some times?

Feelings

"The notion that our feelings are some kind of sacred cow that merits special honor is one of the greatest embarrassments of the self-help movement.  If expressing your feelings generally makes you or other people feel worse -- doing harm -- try thinking about feelings as teachers, rather than as judges about how the world is treating you."  Dr. Joan Borysenko.

Feelings are important; neither good nor bad - social skills curriculums teach; and that might very well be true.  But, as Dr. Borysenko points out, acting on or expressing our feelings can cause harm to ourselves and others.  As dementia caregivers we probably have many feelings - self pity, overwhelmed, anxious, contentment - among others; and these feelings can teach us how we are doing -- a very important service.  We don't have to speak our feelings or act them out, but they can be guides for us on how well we are handling life and the role of caregiver.  What do your feelings tell you today?

Great respite

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition."
Steve Jobs

I am back and refreshed from a great respite, only part of four days, but -- they were worry free.  I knew my sister would have things nicely in hand while I was gone, and today when she left, Dwane actually said to her, "Let's do this again sometime."  How wonderful.  They both had fun; and so did I.  I got to see my grandson run his best cross country race to date.  Just a delight to see him do so well.  My daughter is a great travel companion, and it was so good to see my son and his family.  The wonderful energy of a city.  Such a contrast from my daily life.  Let us be sure as caregivers to follow our own heart and intuition, AND to arrange worry-free breaks for ourselves.  

Simplicity

"I believe a leaf of grass is no less than the journey-work of the stars." ~Walt Whitman

What a good reminder of the beauty in simplicity to compare a leaf of grass with the heavens.  It is a good reminder for us who are caregivers to notice the beauty in the simple and seemingly small things in our lives.   Like Dwane knowing the odd sound of the engine might be low oil.  What a lovely event.  He probably saved us from significant damage to the engine.  A kind neighbor picked me up at the garage and gave me a ride home.  A small act reflective of the kindness of humanity.  We are having roast with garden-fresh vegetables for dinner.  One meal which can be a cause of gratitude for the abundance of good and nutritious food.  A meaningful and connecting conversation with my daughter; an example of the goodness in nurturing relationships and communication.  What in your life today is reflective of a greater beauty and goodness?

Patience

"Adopt the pace of nature: her secret is patience." ~Ralph Waldo Emerson

Ahhh, Patience.  Something we need in the role of dementia caregivers, and something which is not always at ready supply.  I have read Dr. Joan Borysenko's comments on patience and her observation that what most of us call patience is impatience stretched to its maximum limits.  And, on a tape of Eckart Tolle, he once commented that if one has to wait in line to just be enjoying oneself, rather than be impatient at the waiting.  Tall order!  I have noticed that I am more patient when I am feeling content myself; that means, not stressed, not overloaded, not overly tired or hungry.  So, we are back to taking care of ourselves as a top priority.  If patience is a needed quality for a caregiver, then let us start with being patient with ourselves!  Then, let us make sure we are taking good care of ourselves. 

Baffling

“Life only demands from you the strength you possess.  Only one feat is possible:  not to have run away.” Dag Hammarskjold

In AA (Alcoholics Anonymous) they say that alcoholism is a baffling disease.  So is dementia.  Day to day and moment to moment can be so different.  Last night he was unable to remember how to use the remote for the tv, and today it was he who figured out that the odd noise in one of our vehicles might be caused by low oil.  Amazing!!!   It is no wonder that we as caregivers might vacillate among the choices for support and settings.  One day there is good functioning, and the next day or moment there is not.  One moment he reasons very well, and another one he uses such poor judgment that he endangers himself.  It must be confusing for the person with dementia, as it is for those of us who are caregivers.  So, what do we do?  Perhaps as Dag Hammarskjold said, we are called to just not run away, but to grapple instead with the baffling inconsistencies of living with dementia. 

I'm off

"The poetry of the earth is never dead." ~John Keats

Well, today I am off for my mini vacation.  I am so grateful to my sister for coming to give me a worry-free break.  I know all will be well in her capable hands.  And I, I get to frolic with my children and grandson, eat at a great restaurant, and see a good play.  The energy of the city compared with the solitude that is our chosen daily fare.  Both energize me.  I am so excited.  I am even taking a break from the daily writing of this blog, by writing in advance for the days I am gone.  To have something to look forward to is so important for us who are caregivers for dementia.  What I have looked forward to has arrived.  I have read that some people begin planning the next thing to look forward to as soon as the current one has ended.  Good advice.  What is your next thing you look forward to? 

Consider your limits

"Give as you can but know your limits. Stop periodically and think about your giving. Are you feeling pleasure in your efforts?"  Lynn Eldridge, M.D.

A friend sent me a link to caregiving tips aimed at supporting people providing care to someone with cancer, but the tips are helpful to caregivers for dementia too.  I think the above tip is especially important.  I know this summer I have had some times when I was not feeling pleasure in my efforts.  I think that is inevitable, but also detrimental to our health and the situation of caregiving.  So, when we feel loss of pleasure in our efforts at giving in this caregiver capacity, let us stop, reconsider, and implement a new plan.  Whether that new plan means a change in setting for the care receiver, or more support coming in to relieve us, or a change in our own attitude:  change is called for.  Let us who have chosen (or feel we have had forced upon us) to provide caregiving, self monitor to ensure that we are not giving in resentment, but in peace and well being.  The link for the rest of the article is:
 

http://lungcancer.about.com/od/tipsforcaregivers/a/caregivertips.htm?nl=1

Kindness versus people pleasing

"Until we have developed self-respect and the humility that arises from authentic inner security, we are likely to feel guilty if we fail to please people, even when pleasing them would be harmful in some way." Dr. Joan Borysenko

The above quote is something I try to remember in caregiving. Lots of what Dwane would like, could be harmful to him. Such as riding his motorcycle. He could not get it running this summer, and I was greatly relieved because it would be potentially disasterous if he should try to ride it. We might want to think about the care receiver's preference versus harm when we consider what is the best placement for them to be in also. Most people want to stay in their own home. Who can blame them? But, there may come a time when the caregiving you provide along with the support you have created is simply not enough. Then, I think we need to muster the respect for self and other and act out of true kindness: in implementing what is the best setting for safety and well being

Cheering each other on

"I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in." ~John Muir

We have the most exquisite blue sky where I live.  I read of research which indicates that SADS (Seasonal Affective Disorder) is more likely caused by lack of blue sky than by lack of sun.  Regardless, the blue sky background for the dark green of the evergreen trees is just breathtaking.  I had a long walk today.  Dwane was involved in an activity I deemed to be safe, so I went longer than usual.  I had the thrill of hearing geese honking, as they travel south for the winter.  What a lovely, haunting sound.  I wondered at the effort of honking while also flying, and my daughter told me of a lovely thought:  the geese are cheering each other on!  I choose to believe this is true, and that is what I would like from this blog -- that we who are caregivers or anyone dealing with a  life difficulty are cheering each other on:  by reading and sharing good ideas, by caring, and by supporting each other.  Let us follow the good example of the geese and cheer each other on. 

Steve Jobs

"All I ever wanted to do was make a dent in the universe," Steve Jobs.

My computer was down the day I learned that Steve Jobs had died (heavy cloud cover prevented satellite reception).  I was surprised how much loss I felt because I do not personally own an Apple product, but I was touched by the passing of such a brilliant mind.  I'm sure we have all heard it said that, if we want to know how much we will be missed; just put your finger in a glass of water, pull it out, and see what impression your finger left.  Well, the passing of Steve Jobs has made me realize how untrue that adage is.  We do make an impression on our worlds:  either positive or negative.  I don't think we can be neutral.  So, perhaps we need to choose wisely what impact we want to make.  Although most of us will not have the impact of Steve Jobs on the world, we can affect our own little worlds, the person for whom we provide care, and the people with whom we associate.  Today notice:  is your influence positive or negative?

Kathy, thank you for your comments and your calling to my attention that sudden behavior change can be the result of illness.  I will investigate that possibility.  I appreciate your thoughtfulness and your taking the time to comment. 

Hope for the best

“Hope for the best, prepare for the worst.” His Excellency the Fourteenth Dalai Lama

Just when I thought Dwane had accepted my sister (God bless her!) coming to stay with him when I am gone next week, yesterday morning he had a major meltdown.  Complained that he did not need a babysitter.  Ironically, this is the same week that he nearly had a vehicle accident (doctor has told him twice that he is no longer to drive) and fell using poor judgment and a ladder.  So, I prepared well in advance, even got someone to come in that he enjoyed (he had said the person would probably be Jack the Ripper - when he chose the option of someone coming in), and I let him choose which option of coverage he wanted.  And, still the behavioral backlash.  It is sometimes very hard to tell which is the disease process and which is his inherent personality.  6 more days and I get a good break!!!   My first real vacation in years.

Stress buster

"In times of trouble, there is no substitute for the sound of your mom's voice." University of Wisconsin study.

Lovely to hear, but - what if we no longer have a living mother?  Or, what if the person for whom you provide care is your mother, and she is no longer the mother who comforts you?  Then, we need to find other ways to comfort ourselves.  Rest, recreation, healthy social connections, exercise, respite.  Perhaps we can be the mother our children call for the boost in their feel-good hormone oxytocin; but for our own boost we will need to be more creative.  What comforts you?

Solitude

"Periods of solitude refresh our appetite for togetherness." Adam Waytz, PhD

Solitude.  Hard to get when one is providing 24/7 caregiving.  This week, even with a home health aide here, Dwane drove a vehicle dangerously and fell while trying to use a ladder.  Hard to imagine what would happen to him if he lived on his own.  The irony:  because he is so resistant to any outside support; except for me, of course -- he seems to think he is entitled to my being here for him.  Ahh.  Guess you can tell from this blog that this has been a rough week.  The "36 Hour Day" says most caregivers wait too long to put someone into assisted living.  I think they are right.    

Intuition

"Your body's intuition -- sweating hands or a sinking feeling in your stomach - will point you in the right direction faster than your brain." University of Iowa research.

I think it is important to honor our intuition.  While intelligent thinking and reasoning are vital to our lives as healthy human beings, I think we undervalue and under-use our intuition.  A friend was bored with a meeting and left, just missing someone he would rather not spend time with. Many years ago I was up on the roof cleaning a skylight and the ladder slipped below reach; Dwane - who had been mowing the lawn - had the hunch to come check on me.  Intuition in both cases.   Perhaps in this role as caregivers we can rely on intuition.  I sometimes have a sense that I should check on Dwane, and it turns out to be at just the right time.  Our intellect is something to value and protect.  So is our intuition.

Fall colors

promoslogos.com

"In every walk with nature, one receives far more than he seeks." John Muir

I downloaded this photo (or uploaded it?) from internet because it reminds me of the trail I run or bike every day, and I wanted to share that with you readers.  Fall is such a wonderful season here, exquisite colors and temperatures and luscious produce.  My favorite season here. 

We had a close to serious mishap yesterday.  Even with a home health aide and myself here, Dwane got the snowplow keys and was driving it, careening around other vehicles.  I managed to stop him before he crashed into the health aide's vehicle, but it was an unpleasant scene.  I now know what a friend of mine would complain to me about with her husband's dementia; she would talk of how good her husband would be when with others -- so that they would think he was normally functioning.  But, then she would get the backlash.  It seems that is true with some types of dementia; the person is able to "rise to the occasion" of functioning well briefly when stimulated by others' presence, but then falls back to status quo - or even below that.  We are seeing that even as Dwane was more his old self after our serious conversation, and the last two days have been frightful.  Belligerent, argumentative, extremely poor judgment, lots of mishaps.  It is an interesting process, isn't it?  If we can remain objective enough to observe. 

Attitude

"The greatest discovery of any generation, is that a human being can alter his life by altering his attitude." William James.

I am reading a book lent me by my daughter, Lessons From Everest by Dr. Tim Warren.  Very interesting learning the technical aspects of climbing Mt. Everest, but even more interesting in its applicability.  Both Mt. Everest and being a caregiver for dementia can be in inhospitable environments (created in the latter by the fallout of behaviors and mishaps), in both one has to find and use resources to survive, in both attitude is an important factor in how well you will do, and in both having the support of others is critical.  Dr. Warren failed in his first attempt to summit Mt. Everest, and he succeeded in his second both from his extra physical training in preparation and in his change of attitude.  He saw himself succeeding.  Let us today see ourselves succeeding (that is not just surviving but thriving) in this role of caregivers.  Dr. Warren had the mantra "summit and safe return".  Let us have a mantra as well; such as, "caregive with graciousness and thrive". 

Outcome of conversation

"By taking decisive actions that address your situation, rather than detaching and wishing problems away, you can gain a sense of personal control." Mayo Clinic Health Letter

Since I told you about my ultimatum with Dwane about appropriate care while I was gone and the 2 choices I gave him, I want to share the results.  When I asked him on the day I wanted his decision by, he responded, "have someone come here to stay."  Whew!!!   My strategy worked.  I got what I wanted without a lot of fight and drama from him; by giving him a choice among two options that would give him the safety I wanted for him.  This is a strategy often used with children:  giving them two choices, such as, 'do you want to brush your teeth before or after you put on your pajamas?'  Giving people choices - while controlling the choices within what is desired, often takes the "fight" out of the situation.  The person does not feel ordered to do something and is likely to feel more part of the decision.  This may not work for all people with dementia, but it worked very well for me.  I got something very important to me:  to go visit my grandson with no worries about Dwane's safety; and he got to choose the manner in which that safety was arranged.  I realize that I did what in substance abuse is called an intervention.  That is when you tell someone how their behavior is affecting you, what you want from them, and an ultimatum if they do not agree.  I would reserve this technique for the very, very most important things --- and traveling to see my grandson while knowing Dwane was safe - is that important to me. 

"You may never be totally ready for a difficult situation, but when something bad happens, keep yourself afloat by:"  Mayo Clinic Health Letter

The article on resiliency continues with some pointers on what to do when difficult situations (such as, I might add, being a caregiver for dementia) do occur.  The suggestions are:

• Take care of yourself
• Turn to others for support
• Be proactive
• Accept change and remain hopeful

Just today I said to someone thanking me for my services that the healthiest people I know are the ones who reach out for support.  Life is too difficult to go it alone; to be healthy, we must have the support of skilled people.  That is part of my intention with this blog:  to provide reliable and skilled support for other caregivers and other people who are experiencing difficult situations. 

Magnify the good

"Educate, enlighten, lift up, positivize, encourage, magnify the good and minimize the bad.  This is the only remedy that will heal the corpus populi." Charles Burton.

Charles Burton was a publisher, and this expressed his belief of his responsibility of what he published in his magazine.  It reflects my beliefs too.  In this blog I want to educate, enlighten, lift up, positivize, and magnify the good and minimize the bad.  Goodness knows we who are caregivers for dementia could magnify the bad; as there is plenty of it.  But, honestly, what good would that do?  I am re-reading "The 36 Hour Day" by Mace and Rabins, as I think it remains the single best resource for dealing with dementia; and I need to update my strategies for dealing with the "bad" -- which includes his inability to be aware of his own cognitive limitations and functioning, his defensiveness, the difficulty communicating.  I update my strategies to deal with the "bad", so that I can focus on the "good":  his cute sense of humor, his efforts to stay functioning, his desire to be a good person.  Together we can do this caregiving, do it well, and become better persons for having done it.

Revelation

"Revelation:  An act of revealing, especially a dramatic disclosure of something not previously known or realized." American Heritage Dictionary

It has occurred to me this week that a large part of my stress has been setting up support systems and intended-respite for myself and then trying to get Dwane to cooperate with what I have set up.  Respected sources recommend that the caregiver does not discuss these things, just sets them up, and leaves.  And I am sure that works with some types of dementia and some people who are caregivers; but it was not working for me.  A large part of my stress was from being secretive and then worrying if I could get Dwane to go along with it.  So, I tried a different approach yesterday.  I told Dwane that I am going to see my grandson, and that ethically I needed to ensure I was leaving him in a safe environment.  Then I gave him two choices:  he could have someone come in that we paid or he could go for a few days to a room within an assisted living setting.  He was, as I expected, opposed and insisted he could stay alone - even though he does not drive, cook or handle emergencies.  But I was very firm and told him that if he wants to remain at home, it can only be with my getting regular breaks monthly.  He has two days to make his choice.  Please hold us in your good thoughts, and I will let you know how this new approach works.

Cultivating spirituality

"You can be spiritual by reflecting on your own life and its purpose, and connecting it to something larger than yourself, whether through religious worship, art, music or the natural world." Mayo Clinic Health Newsletter.

Finding meaning in life seems to be a timeless goal for humanity.  Many find that meaning through religion, but it can also be found through determining a purpose for your life and following that purpose.  Although I was raised in a particular religion, for which I am grateful -- for its foundation, I would now consider myself more spiritual than religious.  For me, determining God's plan for my life and living up to that plan are paramount.  Finding meaning in my life is part of my orientation.  Recently I said to a friend that I wanted to learn what was here for me to learn from encountering caregiving for dementia in my life.  She said that she did not think we were here to learn something.  It does not matter which of us is right, or if either of us is.  Part of my orientation is to learn from my experiences and become a better person because of the learning.  It helps me have meaning in my life. 

Practicing optimism

"Look for the positive, count your blessings, forgive, savor good times and simple pleasures, and practice kindness."  Mayo Clinic Health Letter

Another way to develop resiliency so that we are better able to handle adversity is by being optimistic.  It is really true.  It seems in my observation that when people dwell on negative, more negative occurs; and conversely; when people dwell on the positive, more positive occurs.  This does not mean we can stop bad things from happening, but even such a simple example as how you wake up in the morning.  Have you ever noticed that if you wake up cheerful, the day often goes better?  While if you wake up irritable, things seem to go downhill from there.                                                                     

What are some things we can savor?  Right now for me:  the abundance of fall produce, the exquisite colors of the deciduous trees, the lovely days and cool nights.  And, in practicing kindness, let us put ourselves at the top of the list.  Let us practice being kind to ourselves, and then kindness to others more naturally happens.