Jul 31, 2012

Purpose in Life

"It could not happen that God could create a spiritual entity such as you are; without having a special purpose in view, and that means that there is a special and particular place in it for you." Emmet Fox

Are you one of the people who considers what is the purpose of life?  Not everyone does, but if you do consider your purpose, have you determined what it is?  I have done countless exercises designed to help someone know what his or her purpose is, and the results have always seemed vague.  Purpose, for me, would have to have something to do with improving the world by how I live my own life.  There are schools of thought which say that there is a creative energy of life, and that all we have to do is set a conscious intention and this creative energy helps us achieve what we want.  Kathy Juline suggests that we set a conscious intention of something we desire, declare this intention, and anchor it with a strong conviction that it is sure to be realized.  Then to take any actions you feel guided to take toward achieving this intention. 

What if we all set the intention for world peace, starting within our homes and our families?  Let us consider doing this.  If we all set the intention for peace, it could have a tremendous impact.  Let's try it.  I intend to practice peace.  How about you?

Jul 30, 2012

A Sweet Life

"There is not in the world a kind of life more sweet and delightful than that of a continual conversation with God." Brother Lawrence

Many years ago I read a book by Thomas Merton and decided to strive for being a contemplative in action.  All that means, in my opinion, is that my relationship with God is not constrained to the time within the hours of prayer, but that my intention is to make my life a prayer.  To do that, I start my day with spiritual practices or prayer, and then I strive to treat all people, things, and the planet with kindness.  Practicing gratitude helps with that focus.  So does something I learned many years ago from M. Scott Peck's book, The Road Less Traveled, which suggested that a person never say anything unless he or she was convinced it was in the best spiritual interest of the other person to hear it.  Wouldn't that stop a lot of the unkindness in the world?  All the hurtful things that are said would be affected by choosing to say something only if you thought it was in the best interest of the other person to hear it.  Notice that it is not if it is in your best interest, but is it in the best interest of the other person for you to say it?  I have extended that practice in my life to the decisions I make.  When I make a decision, and this includes when the decision was made to move Dwane into assisted living, I consider the best interest of everyone involved.  The decision needs, for me, to be in the highest and best interest of everyone involved in order for me to implement it.  We do need to make sure our ego is not the one in charge when we make these decisions, and one way I check to make sure is by asking the objective opinion of others whose opinions I value.  What decision could you make today that is in the best interest of yourself and the others who might be affected?

Jul 29, 2012

Our Interconnection

"All the world's a stage, And all the men and women merely players: "  William Shakespeare

The idea that we are all interconnected and that we spend our lives trying to meet our needs is not new.  Psychology has long pondered how we humans play what has been said or done to us throughout our lives.  None of us completely got our needs met while we were growing up.  We were raised by imperfect parents, so there is the thought that we spend our lives trying to get those needs met.  Regardless of whether that is true, we humans do seem to have patterns in our behaviors and relationships.  Mark Nepo says, "All the players in our dramas must be voiced before they will leave us be."  So, if in our family of origin we were the scapegoat, we will unconsciously look for situations in which we are the scapegoat.  It is familiar.  If we were the hero, we will look for situations in which we can shine to bolster our self esteem.  The way to stop this recycling of behavioral patterns is to recognize what need was not met, how we have tried to get that need met in ways that do not serve us, forgive ourselves and others for any trespasses on our souls, and engage in life in a new way.  It really is that simple.  But, it seems it is the only way to free ourselves from relationship patterns.  Take caregiving for example.  Have you been in situations before which called forth your caretaking skills?  I would venture that most of us have.  We might want to take a look at that.  If we are getting our needs met by being needed by someone who is unable to take care of him/herself, that does not serve us or the care receiver.  For certain, at this point in life we are caregivers.  Let us look to see if we are fulfilling a need by that caregiving.  This does not mean that we ditch the caregiving role midstream, but that we become clear about why we are doing it.  You may be surprised.

Jul 28, 2012

Let Go and Let God

"When your tasks seem a little heavy and overwhelming, remember to do one thing at a time quietly, and leave the rest because the rest is not your job. What you cannot get through, you must hand back to God and He will work it out for you." White Eagle

As caregivers for someone with dementia, the tasks can seem too heavy and overwhelming, and the above seems like good advice: to do one thing at a time quietly and leave the rest to God (as you understand God or a Higher Power). This same advice is given in the 12 Step Programs. People with addictions and those in relationship with them can make a mess of things by themselves, and they are advised to "Let Go and Let God": the same advice White Eagle is giving. Perhaps that seems like magical thinking, or perhaps you do not believe in a benevolent presence in the universe. In spite of that disbelief, this is good advise. We can only do so much. To try to do more is to endanger our own health. When the neuropsychologist recommended that my spouse be in a "setting where there is plenty of supervision", that would have been impossible to implement at home. Even with hired health care workers present, the equipment and vehicles at home created an environment in which Dwane endangered himself. I could not provide adequate safety in the home setting. We each need to do what is needed for the safety of the care receiver and the well being of ourselves. And, we can choose to trust God that the rest will be taken care of.

Jul 27, 2012


"Fluctuation:  one feature that distinguishes DLB from other forms of dementia is clear fluctuations in an individual's attention and alertness."  Mayo Clinic Patient Education

There are aspects that are difficult at both ends of the spectrum of lucidity in Dementia with Lewy Bodies.  When he is not lucid, that is difficult because he will lash out against his situation and deny that he has any need for assistance.  When he is lucid, as he was yesterday, he understands his situation so well that it is sad.  Yesterday, he acknowledged how much he is declining, and he told me to put him into hospice as soon as he needs it.  He is not ready for hospice yet (I called them early on and was told they take people when a doctor says the person has about six months to live.), but it was a tender moment for us when we could acknowledge the toll this disease is taking.  This does not mean he may be that lucid about his reality in the next conversation.  It had been just the previous conversation where he had told me I needed to get the house ready for him to come home.  As caregivers we ride a roller coaster as we interact with the care receiver in his/her various states of lucidity.  What I try to do is just listen and empathize with him -- however lucid he is.  When he is not lucid, I may reflect back to him a bit of reality:  such as, "Remember.  The neuropsychologist said you needed assisted living now."  It is a balance between not arguing (which is pointless and frustrating) and not condoning their non-reality. 

Jul 26, 2012

Miracle Workers

"A miracle worker is not geared toward fighting the world that is, but toward creating the world that could be." Marianne Williamson

We who are caregivers are miracle workers.  We take a very, very difficult situation and work toward creating the best of the situation for the care receiver and ourselves.  I have come to belief that -- for me -- I do not want to fight against anything.  I think it is a mistake to "fight" the disease of dementia, or other diseases, like drug addiction.  That does not mean we do not aim for the highest quality of life for the person with dementia and ourselves, but to "fight it", seems to me to be using our energy in the wrong way.  Miracles do happen, but one reason they are called miracles is that they are rare; not the usual circumstances.  I think it is fair to say that we are not going to "beat" dementia during the time that we are caregivers.  It is a terminal and progressive disease.  We who are caregivers see the progression on a daily basis.  I think it is important to accept that this is a terminal disease, and then to make the best of the life time that remains.  And, to make the best of it, means to focus on the well being of the care receiver and ourselves.  The most important aspect for the care receiver may very well be safety, as in Lewy Bodies Dementia the application of judgment to actions and decisions is severely damaged.  The most important aspect of well being for the care giver is respite from the demands of the care receiver, and that sometimes means having the care receiver live in a setting where the supervision is in place.  Whatever our decision, let us remember we are miracle workers:  working toward creating the best possible world we can -- for the care receiver and ourselves -- within the parameters of the disease of dementia.

Jul 25, 2012


"When you realize that everything springs only from yourself, you will learn both peace and joy." The Dalai Lama

What if the above statement is true?  Well, that would mean that we could not blame other people or any circumstances for our own happiness.  It would mean that the quality of our lives was our own responsibility and not dependent on any outside circumstances.  When we, as caregivers, get frustrated, which is only natural, let us remember that the quality of our lives is up to us.  How do we practice this?  Some ways that help are to practice gratitude.  Are you still writing down 3 miracles you see in your every day life?  Having this practice helps us to look for the miracles, to look for the positive things occurring in our lives.  We can choose to see either the positive or the negative in our lives.  This does not mean we pretend the negative aspects are not there; it just means that our focus is on finding the positive among the many attributes of any experience in life.  I took Dwane to a concert recently.  He had said he wanted to go, but I noticed his eyes were closed during most of the concert.  He complained his chair was too hard, and then that his legs were numb.  It seems we are in the stage of Lewy Bodies Dementia where he still wants to do things, but the body is not supportive of the activity.  People asked me if he enjoyed it.  I have no idea, but exposure to music is good for the brain and it was good for him to get out into different settings.  I think he did enjoy the dinner beforehand.  Will I take him again?  Not sure.  But I do not regret taking him.  The music was good, it was well received, and I got him in and out of the crowd without incidents.  Perhaps The Dalai Lama is right:  peace and joy spring from within us and we have the power to choose the attitudes that support their flourishing.

Jul 24, 2012

Skilled Listening

"Communication is to relationships what breathing is to life." Virginia Satir

It has come to my attention that in periods of agitation and anxiety, Dwane has even called our minister --- complaining that I have stuck him away in a basement and abandoned him, and that every other resident gets to go home for extended stays.  So that adds to the list of family physician and family members that I am aware of he has called.  It is ironic.  There is an element of truth to what he says to them:  he is in a lower level of the assisted living facility.  He is not isolated; in fact, where his room is with its expanded living area has more staff interaction than the individual rooms.  And, as far as abandoning him, I see and talk with him several times a week, take him to appointments, buy him clothing and equipment.  And, of course, residents do not go home for overnights except on very rare occasions.  Hearing from our church secretary how Dwane has called there reminds me of how important it is to have skilled listening when dealing with someone with dementia.  Skilled listening is hearing their upset, without believing all of what they say.  One of the sadnesses the disease of dementia has created is that Dwane is no longer a reliable reporter of the facts in his life. (an example is last week when I took him to a doctor to check a pain in his groin:  he reported that he has had the pain for about 1 year (it has been about 5 weeks) and that he has it all the time (he only has it when he is lifting his torso to get out of bed.)  I do not blame him for being upset about being in assisted living-- even though we agreed when I was driving us home from Mayo Clinic where we got his diagnosis that I would do home care only for so long as it was workable for me, but his upset is made worse by people who listen and support his delusion that he could live independently.  He would prefer to live at home, but that is no longer possible.  The assisted living center now wants him to have a walker and a lift chair, it took 30 minutes just to get him out of the center and into the car to take him to a doctor appointment this week, he can no longer get out of chairs, his legs go numb if he sits too long, he now wears adaptive clothing.  The neuropsychologist recommended "a setting where there is plenty of supervision", and that is what he has now.  So, skilled listening is not supporting any delusion the person with dementia may have, but hearing their feelings, their anxiety.  It is knowing that part of what is speaking is the disease of dementia.  I am grateful for the skilled listeners, like the church secretary, who told Dwane that I would not have put him in assisted living if it were not what I thought was best for him and for me.  Thank you to all the skilled listeners who support both of us.

Jul 23, 2012


"Your beliefs create your personal reality."  Dr. Joe Dispenza

It seems that the idea spoken in the above quote is seen in various places nowadays, and other thinkers in the past have upheld that view as well.  For example, Dr. Viktor Frankl who was able to see beauty and forgiveness in the midst of being a prisoner in a concentration camp.  It sounds simple:  align our beliefs with the quality of life we want to lead.  But, it may not be so simple, as I think there are beliefs of which we are not aware; beliefs that thwart us from creating the life we want to have.  Some beliefs that I have had that I have also chosen to release are:  that one has to work hard to get anywhere in life, that one has to work hard for money, that one could not expect the best, that a person should be afraid if things are going too well because it can't last, that anyone (this almost always is ourselves) does not deserve a good life.  Periodically, I reevaluate my life to see if there are any beliefs of which I am unaware that may be interfering with the quality of my life.  Some things we can do to help us have the life we want are to practice gratitude.  This involves noticing what is right in our lives and then being thankful for those things.  Another action step is to expect good things to happen (because they usually do), and to not take personally when things do not go so well.  What are some of the ways you, as caregiver, support the quality of life you desire?   

Jul 22, 2012

CSA's: Community Supported Agriculture

Over the last 20 years, Community Supported Agriculture (CSA) has become a popular way for consumers to buy local, seasonal food directly from a farmer. Here are the basics: a farmer offers a certain number of "shares" to the public. Typically the share consists of a box of vegetables."  www.localharvest.org/csa

As caregivers we need to find easy ways for us to have nutritious food for ourselves and for the person for whom we provide care.  Gardening may not be an option for you, either because of space or time required, but a local CSA might be an option.  I have joined one.  For $300 a year I get a box of fresh, local produce from late June to October.  I love getting the box.  It is like a treasure hunt -- to see what is in the box this week.  The produce is picked that day, it is organic, and it is delicious.  I have been exposed to things I have never tasted; like bok choy flowers (spicy and delicious on top of salad), and rainbow chard (delicious slightly wilted in olive oil).  I love the idea of the CSA.  I am helping them pay for seeds and the other expenses of having greenhouses and gardens, and I am also getting locally-grown, nutritious vegetables.  Turnips that one can eat like an apple, dark green lettuces.  Just lovely.  CSA's have grown more popular.  There might be one in your area. 

Jul 21, 2012

Manifesting Our Thoughts

"it is only the feeling of vulnerability that ever puts you into a vibrational harmony with that which you fear. When you realize that by working to achieve your feeling of Well-being, it is then impossible for you to ever rendezvous with anything other than Well-being — that is the only place that freedom will ever be."--- Abraham

The above is a school of thought that teaches that our emotions are what attract our experiences in life.  I had a recent experience that would seem to support that.  We are in the midst of record-setting heat and drought.  We have not had measurable rain since the first week of June.  Our neighbor's well quit giving good water and was just drawing sludge.  I started worrying about our own well, how I better conserve water, better not water the lawn, found myself thinking that I sure hope our well does not go dry.  Then one day in watering the vegetables in the greenhouse, in a distracted moment, I left the water running in the hose and forgot about it.  Some time later I turned on the kitchen faucet, and --- no water.  Realizing quickly what I must have done, I turned off the outside faucet and then I had water.  But, I had run the well into the sludgy sediment at the bottom.  Gratefully, I can tell you that this ends well (my fear was having to drill a new well).  Our well is fine.  It may even be better because of clearing out some of the deposit in the bottom.  But, the lesson here for me is that I was worrying for two-three week about our well running out of clear water before I actually created that reality by leaving a faucet open.  Is it possible that in my worrying I created what I was worrying about?  I think it is a real possibility, and I henceforth proclaim that I will prevent my thoughts from going to worrying about anything.  Well being:   that is the freedom I want and that is the place where I choose for my thoughts to reside.  And, my daughter gave me the most brilliant idea:  to put a nozzle on the end of the hose that one has to squeeze for the water to come out.  That way I will never leave the water running again.  So, today I am in gratitude for my efficient well which provides pure, plentiful and clean water for me; and I am grateful for this micro-lesson in choosing my thoughts and never engaging in fear and worry.  Not even worry about what the disease of Lewy Bodies Dementia has in store for us.

Jul 20, 2012

Being True to Oneself

"There's no one alive who is Youer than You." Dr. Seuss

I love Dr. Seuss's playful way with words.  His books were some of my favorites when I read my children their nightly story.  I loved bedtime.  Tucking each child in and reading to them books of their choice.  It always puzzled me when parents had trouble getting their children to go to bed.  At our house going to bed was a fun, connecting, relaxing ritual.  I tried never to miss it.  When I think back over my life and all the wonderful things I have experienced and the ways in which I feel I have made a positive difference in the world, the greatest legacy I will leave is being a part of bringing my two extraordinary children (now adults) into the world.  Their legacy is already far more than mine.  They both seem so good at being themselves.  I am so grateful they are a part of my life.  When there are times that I struggle with being myself, I look to them as models. 

"Each of us is different, or we frankly wouldn't be necessary.  When we try to change or control others, it's because we've momentarily lost grasp on the reins of managing our own lives and reach misguidedly for the reins of others.  A world that works for everyone is, in large part, a world where all people mind their own business, because their own business is enthralling enough to them that they can both live and let live."  Dr. Jesse Jennings

Jul 19, 2012

Wasting Money

In case you are getting tired of my message to live on less than you make, let's take a look at some ways to waste your money." Rick Kahler, CFP

A clever column on ways to waste money.  As caregivers, we are hard pressed to take care of all of the responsibilities before us.  If you are taking care of your care receiver at home, you are vigilant 24/7, besides doing all house business, cleaning, maintenance, laundry, yard, etc.  If you are a care giver of someone living in a facility, you still have many responsibilities.  Some clever ways to waste money that any one of us may be guilty of:  driving across town to save 2-3 cents on gas; buying name brands instead of store brands; paying full retail price for clothes, furnishings, furniture; not maintaining house or car; being disorganized about paying bills; buying the latest supplement or paying more for brand-name vitamins; not using a credit card that gives you rewards.  I know that we who are caregivers are very, very busy; but we need to make time to be good stewards of our money.  There are many expenses that we have to be prepared to pay for the care receiver; and that is easier if we are good about managing our money overall. 

Jul 18, 2012


"Bison meat is very lean, with about one-third the fat of skinless chicken breast meat.  It contains exceptional levels of protein, minerals and essential fatty acids." North Dakota State University

When we think of eating with health in mind, if you are a meat eater, you might want to check out bison.  I switched to bison with the arrival of mad cow disease -- I am not advocating that others do that, but just suggesting that bison is a healthy alternative to other meats.  I have been hungry for chili (yes, even with this record-setting heat), and I made a pot of homemade chili to simmer while I paid bills and took care of correspondence this afternoon.  The chili will be a nice alternative to the salad dinners I have been having.  Another healthy choice, that I often slice and have with a salad, is eggs.  I buy organic eggs from an indoor farmer's market.  I enjoy the fact that a nine-year old girl in the region cares for the chickens and sells the eggs.  I bring several of them to a boil, take the pan off the heat and leave covered for about twenty minutes, and then use them for egg salad sandwiches and for slicing on top of my green salad.  Eggs are an excellent source of nutrition:  6 grams protein and significant amounts of B vitamins, vitamin A, vitamin E, iron, zinc, iodine and selenium -- for only about 70 calories per egg.  As caregivers we have many demands on our time.  It is important to make nutrition as easy as possible so that it is not just one more burden on our overly-stretched time.

Jul 17, 2012

Behaviors Are Part of Dementia

"In caring for a person with dementia, the term "behaviors" is often used to imply some negative distress exhibited and observed in the person with dementia. It can include agitation, paranoia, resistance, or even yelling and hitting." Angela Lunde, Mayo Clinic

In the latest Alzheimer's Newsletter from Mayo Clinic, Angela Lunde expresses the view -- held by behavioral psychologists -- that behavior expresses a need.  That is probably true, but the negative behaviors that accompany dementia can be very, very difficult to navigate.  And - while Lunde says the behaviors express a need, it seems to me that the behaviors are an expression of the general frustration of the changes the person with dementia is experiencing and does not understand.  Of course, we as caregivers can give reassurance and solace.  We can also set up environments to help prevent some of the problems.  But, we cannot do this alone.  It is too trying.  We either must have hired in-house help or help in placement outside the home.  It is humanly impossible to take care of all responsibilities and provide solace.  How do you find a balance?  

Jul 16, 2012

Natural Consequences or Karma

"Every action calls forth a reaction, so that we must respect the potential effects of all of our deeds." Dr. Joan Borysenko

Kindness begets kindness, and we feel better after doing an act of kindness.  Conversely, harsh and unkind words will bring us disharmony and some kind of negative repercussion.  The repercussion may not be immediate, so that we may be fooled into thinking we had no consequence for our disrespectful treatment; but, of this I think we can be sure:  there is a consequence in kind for all of our actions.   So, if we feel better after being kind, and if being kind begets better results from others and the Universe, why would we not choose to always be kind? 

For today, let us endeavor to act only out of kindness in thoughts, words and deeds --- toward ourselves and all other people. 

Jul 15, 2012

Time in Nature

"Time in nature may be one of the best and most accessible natural stress-busters any individual or family could find." Marti Erickson, developmental psychologist

This has always been true for me.  When I was in college and feeling particularly stressed by my schedule of obligations, I would drive to a nearby canyon and sit or walk by the creek.  Just being in nature was enough to bring me back to myself.  I still use nature and exercise in this way.  Today on my jog/walk on the trail through the woods I encountered first a range cow all by herself and later a deer, who was particularly unfazed by my presence.  No matter the weather, I prefer my exercise to be outdoors, because it serves two functions:  exercise and time with nature.  One of the things I like about the assisted living center where Dwane lives is the access to outdoors:  two gazebos in a garden-like setting and a koi pond.  When I visit him, we often sit outside in one of the gazebos.  Research indicates that just one hour interacting with nature improves memory performance and attention span by 20% (U of Michigan research).  Some ways you can enjoy nature and/or help your care receiver enjoy the benefits of nature are to have a garden or to have plants inside. 

Jul 14, 2012

Adaptive Clothing

"Buck & Buck has been providing clothing solutions for nursing home residents and those being cared for at home for 33 years. What began in Seattle as an adaptive clothing service for nursing facilities in the late 70s, has grown to become the national leader in the design and manufacture of specialized clothing. Those caring for people with arthritis, limited range of motion, incontinence, Alzheimer’s disease, stroke, MS, MD and many other related challenges have grown to rely on Buck & Buck to solve many of their dressing problems." www.buckandbuck.com

If you, like me, have had trouble finding attractive adaptive clothing, this website may interest you. I have wanted to avoid the sweats I see other residents in, because Dwane prefers a dressier look. But, he now has difficulty with buttons and other closures, and has to wear both suspenders and a belt to keep pants up. So, this website. This company will put velcro on anything instead of buttons or a zipper, and they are normal-looking clothes. There may be other companies as good, but if so, I have been unable to find them. This one is a keeper. Dwane can still have the look he prefers with clothing he can better manage. They even have shoes with easy closures.  Affordable prices too.

Jul 13, 2012

We Create Our World

"Each person forms his world from the rich, unlimited substance within him and around him through his thoughts, emotions, words and actions." Catherine Ponder

Others have thought similarly.  Viktor Frankl is said to have been forgiving, hopeful and optimistic in a concentration camp.  One way he remained positive, it is said, is that he focused upon the one flower he saw blooming among the squalor and cruelty.  When we, as caregivers, think our lives are challenging, perhaps it is helpful to remember the difficulties others have had, and what has been their attitude toward, or their way of dealing with, those difficulties.  Even if you decide to have your care receiver move into assisted living, there are still many responsibilities.  Doctor appointments, and which options to choose among those that arise out of the doctor's recommendations.  I don't know if it is true of all people with Lewy Bodies Dementia, but we deal with a myriad of physical complaints:  so much so that it is hard for the doctor and for me to know which should be addressed, especially at this point.  Even with these responsibilities, it is important for us to know that we create the quality of our lives.  One way to do that is to hem our days in prayer.  Prayer is a wonderful way to greet the day, and it helps to lift our burdens so that we can sleep at night.  If you are not a spiritual person, then secular meditation is an effective option, as is greeting the day with optimism and ending it with gratitude. 

Jul 12, 2012

Foods to Support Mood

"More than half of the human brain is composed of fat, and two types seem to be crucial to mood:  the omega-3 fats DHA and EPA, found in fish such as salmon and mackerel.  In December 2011, a research review by the New York State Psychiatric Institute concluded that EPA can significantly reduce the symptoms of depression."  Melinda Wenner Moyer

The other foods which support well-being are tomatoes, spinach, whole grains, dark chocolate, spinach and red meat -- according to an article in Parade, July 8, 2012.  According to Drew Ramsey, M.D., Columbia University, people with high levels of carotenoids (found in tomatoes) have lower rates of memory loss and dementia.  It is important for us who are caregivers to bolster our own health, and good nutrition is one way.   A person was telling me recently of someone who ate only a certain number of calories a day, but the person did not care whether the calories were in a hot-fudge sundae or a hamburger.  Calories are something to consider, but not at the expense of nutrition.  The calories of an ice cream sundae and a meal of fish and brown rice may not be much different, but the nutritional value is markedly different.  I have never paid too much attention to calories (because of fortunate genetics, I am naturally slender), but I do usually avoid empty calories, i.e. cake, cookies, etc.; and I seem to naturally gravitate toward nutritious selections as preference.  Regardless of our genetic heritage, we can each support our own health by being mindful to include the above foods in our diets each week.

Jul 11, 2012

Developing Potential

"What each must seek in his life  . . . is something out of his own unique potentiality for experience, something that never has been and never could have been experienced by anyone else." Joseph Campbell

Joseph Campbell pulled out of the myths of the world a structure which he called "the hero's journey".  The stages in this structure are:  hearing a call to adventure, crossing the threshold, facing tests and ordeals, gaining the reward, being transformed and returning home with a gift.  You are the hero in your own story, and I believe that the caregiving role is a type of "hero's journey".  First, we are called to the adventure (all right, maybe we would not lightly call it an adventure) of taking on the task of caregiving.  When we say "yes" to that role, we cross the threshold.  I am sure we can all agree there are many tests and ordeals encountered in this task of caregiving.  What is the reward for you?  It could be knowing you did the task very well, on behalf of the dignity of another human being.  We can allow the journey to transform us.  The research from Roslyn Carter Institute on Aging says 1/3 of caregivers will die doing the job, 1/3 will survive but be damaged by the experience, and 1/3 will be better because of having done it.  I think the last 1/3 were transformed by the experience.  The gift we can return home with (that is:  home to our true selves) is the gift of an expanded potentiality.  What if it is a choice?  I believe we can choose to be a part of the 1/3 that are transformed by this experience.  Please join me in being in that 1/3 who are transformed into better people for having taken this "hero's journey".

Jul 10, 2012


"Fear wants us to act too soon." Mark Nepo

It seems that a fairly constant companion of caregiving is fear, or perhaps it would better be called anxiety.  Being fearful or anxious about the safety of the care receiver, the many physical aspects to address, dreading the resistance to suggestions for safety --- to name a few.  Your fears may be different from mine, but I am willing to bet you have some.  Part of the fear comes from what a reader wrote; that the moments of lucidity fool her into thinking she can continue to do this (care for him at home).  I agree.  The lucid moments are tricksters, which lull us into thinking things are better than they actually are.  Rather like the sirens, who lured sailors onto the rocks in ancient myths; lucid moments lull us into thinking 'this is not so bad'.  The lucid moments are also a gift, as they are a glimpse into the person we know and love.  But, we cannot let them fool us into dissuading ourselves to not put into place the most appropriate plan for safety and well being of the care receiver and ourselves.  Too often so much of our mental energy is going toward the well being of the care receiver, that our own well being takes a very, very back seat.  Two people have told me recently, "You are back."  I know that they mean that the essence of who I am is now available and is no longer tied in knots with concern for the care receiver.  Is your plan of safety and well being serving the care receiver?  Is it serving you?

Jul 9, 2012


"Our entire life consists ultimately in accepting ourselves as we are."  Jean Anouilh

True to his word, Dwane has accepted the neuropsychologist's conclusions of the evaluation and the recommendation for assisted living. His acceptance is such a relief for me.  If you, as caregiver, are providing care for someone who is unable to see their own limitations, having a neuropsychological evaluation done may be greatly effective.  A couple suggestions:  pick someone with good skills and have the person with dementia agree - along with yourself - to go along with the recommendations.  The neuropsychologist I suggested was not only the best in the region, he was also someone we both know.  It is a risk to agree to go along with the recommendations, but it seems to me to be the only fair way to do it.  What the neuropsychologist told Dwane were things I have said over and over, but Dwane wasable to hear them from the objective professional. 

One of the hardest things about caregiving someone with dementia is the resistance of the person to have any support and structure.  Having a neuropsychological evaluation done to determine current functioning, strengths and limitations is a great way to know if the support you are providing is appropriate, and it can help the person with dementia accept the need for support and safety. 

Jul 8, 2012

People Pleasing

"I don't know the key to success, but the key to failure is trying to please everybody." - Bill Cosby

The word, codependent, has become so familiar to us that it is perhaps mainstream, and I happen to think it may be overused.  But.  For those of us who find ourselves caregivers for someone with dementia, I think the aspects of being codependent are part of the hazards of the role of caregiver.  And, what are the aspects of being codependent?   Losing ourselves and our own welfare in the service of taking care of someone else.  We are already trying to do too much, with too little support in many (most?) cases, and then there are the opinions of others.  I was talking with a friend recently who had to put her father into assisted living and then nursing home.  She said that of her two brothers, one supported her and helped with the decisions, and the other found fault with everything that was decided.  She said that even after her father's death, this family opposition caused an irreversible rift in the family.  At least she did have the one brother's support.  That is more than some who are caregivers have.  So, what are we to do about what decisions others think we should make or not have made?  The quote above is helpful.  We will never please everyone.  The only thing we can do is have as our support team the best doctors, neurologists, neuropsychologists, physical therapists, etc. that we can to help us make the best decisions we can.   We must not allow others' opinions to affect our own good judgment and decisions, made in good faith with the best possible professional input.

Jul 7, 2012

Being Happy Where We Are

"So often we imagine that There is more full of gold than Here." Mark Nepo

It is tempting to think that grass is greener on the other side of the fence.  I sometimes smile when I see cattle or horses straining through a fence to get at grass on the other side; grass that looks just the same to me as the grass at their feet.  We humans, too, can think that life would be better -- if.  If this, or if that.  When respected thinkers tell us to stay in the moment or follow our bliss, perhaps a piece of what they are telling us is to be happy where we are.  That does not mean, in my opinion, that we complacently accept some adverse conditions; but it does mean that we look for what is good and right in our life.  I took Dwane out for dinner on our wedding anniversary, and I was touched by his noticing the love and support he has in the cards received and displayed on his side table.  As he processes what the neuropsychologist told us, it seems it is bringing out a softer, more appreciative side of him. 

Jul 6, 2012

Neuropsychological Evaluation

"We need to stay current with each other." Angeles Arrien

We also need to stay current with present levels of functioning and the resulting need for support.  Because of that, I took Dwane this week for another neuropsychological evaluation.  It was something I suggested to him when he asserted that he could live independently and/or at home with little assistance from me.  In the past three weeks he has been adamant that he did not need assisted living.  This delusion was supported by some unskilled listening.  So, I suggested to him that nobody made me God, and why didn't we get an objective opinion? (even though I am trained to do the tests and observations that were conducted with him)  The appointment was made with the best neuropsychologist in the region, and the results were just what I have observed and very clarifying for both of us.  It is no wonder that it is confusing for Dwane and for those of us who care about him.  His IQ is still within the average range.  He has very superior visual memory, and his general memory and verbal skills are very good.  But, he has two areas which have been severely impaired by Lewy Bodies Dementia.   The two severely impaired areas are cognitive flexibility and the ability to apply judgment to his decisions and actions.  It is this last area that impacts his safety.  He is no longer able to judge and make decisions that will keep him safe.  The neuropsychologist confirmed that assisted living was the environment necessary for his safety.  I hope this lays to rest for all of us whether or not this is the necessary setting.

Jul 5, 2012

Choosing Your Thoughts

"When you rise to the challenge of choosing your thoughts with care, you are consciously co-creating with the universe." Kathy Juline

It has been a practice of mine for some years to carefully choose my thoughts, my words and my conversations.  So much damage can be done in the world by words carelessly-tossed in anger.  It might seem that one person choosing her or his thoughts with care would make little difference in the world, but that would be incorrect I think.  I read of a monastery in Greece that does not allow visitors and in which the monks do not speak, and it occurred to me that perhaps their practice of holding the world in prayer makes all the difference, along with all the others who hold the world in prayer.  I once read a quote by a Methodist minister (I no longer remember his name) who asked us to consider what might have occurred but for our prayers.  He asked us to consider that our prayers did prevent bad things from happening.  Perhaps so.  What I do know is that thoughts, words and conversations carefully chosen and based in benevolence DO make a positive difference in the world.  They also make a positive difference in our own health status.  Today let us practice together having only thoughts and words of benevolence and well being. 

Jul 4, 2012


"I have been condemned as selfish for seeking the Truth, which is like blaming a turtle for finding the deep.  Courage of this sort is the result of being authentic." Mark Nepo

The context for the above quote is that Nepo is saying how he chose his response to the treatment of cancer:  saying yes to rib surgery and saying no to brain surgery.  He says it was in honoring what was true for himself that guided him through his experience with cancer.  It can also be what guides us through our experience as caregivers with someone who has dementia.  The truth is that it would have killed me to continue to provide home care to someone who resisted every attempt I made to have respite.  This is not a criticism of Dwane; it is an acknowledgement of the influence of his illness.  There are those who judge me selfish for choosing his safety and my own survival.  But, I know what was the truth for me and the truth of this experience.  Please, fellow caregivers, make your choices based on your own truth and not the pressures, criticisms and opinions of others.  Today is a day America celebrates freedom.  Let us as caregivers declare our own freedom from others' opinions and from situations that prevent us any freedom ourselves.   

Jul 3, 2012

The "Pushing Back" Factor

"Evil is merely privative, not absolute; it is like cold which is the privation of heat. All evil is so much death or nonentity.  Benevolence is absolute and real." Emerson

With some types of dementia, the person with dementia has the cognitive ability to help make decisions to create the needed support systems themselves.  Not with Lewy Bodies Dementia, or at least, not with the frontal lobe type we are dealing with.  The hardest aspect of caregiving when I was doing it 24/7 was his 'pushing back' against the systems I thought were necessary for his safety.  One time he locked out of the house a health care aide I had hired to come to be with him while I was doing a psychological evaluation.  Another time a friend of ours had agreed to come visit with Dwane on a regular basis so that I could get exercise and not worry about his safety.  He was so rude to her the first time that she would never come back.  That was what was the most difficult thing for me when I was the hands-on caregiver.  It is also the most difficult aspect for me now that he is in assisted living.  Assisted living was necessary because I could not put enough systems in place to assure his safety, and he fought against those systems that were in place.  He would actually say that he was "going to show you (me)" that he did not need those systems --- and that is how some of his injuries occurred.  He would go out and drive a vehicle (with the paid aide unable to stop him); one time driving his motorcycle into a large hole in the ditch, just to "show me" he could still drive.

Now, in assisted living he varies from telling me he knows he needs to be there, to calling me demanding that I come get him out, that he does not need to be there.  The nearly constant railing, ranting and fighting back - when he is not lucid - are exhausting.  I wish I knew some good answers for helping him adjust to the reality that he needs assisted living.

Jul 2, 2012


"Meditation fires up the frontal areas of the brain that are associated with attention.  That means you'll be less likely to focus on feeling stressed or down, and more able to concentrate on tasks at hand." Dr. Small, Harvard University

Another endorsement of meditation as an antidote to stress.  A very important consideration for us who are caregivers.  Another study from Sweden showed that women who were under frequent stress had a 65% greater risk of developing Alzheimer's Disease.  So, we have yet another good reason to practice methods that help us cope with stress.  Exercise, prayer, nutrition, sufficient sleep, fun and meditation are all effective ways to help us deal with the stress of caregiving.  Let us be sure to implement these in our lives.  You are worth it.

Jul 1, 2012

Need to Curtail Phoning

"In our fast-paced, wired world, many of us live our lives in chronic stress." Dr. Gary Small author of The Alzheimer's Prevention Program

With the staff at the assisted living, the decision to curtail incoming and outgoing phone calls has been made.  When Dwane is lucid, phone calls are great.  But, when he is not lucid, that is another story.  In recent days he has dialed the wrong number when trying to call me, been belligerent with the person who answer the phone - not understanding why the person could not produce me.  He has called and demanded I pick him up for "the wedding rehearsal" (no idea where he got that idea for me to come get him), and called and demanded I come get him so he can take a shower.  These periods of not being lucid are difficult for us all.  They cause him a lot of confusion.  There was nothing I could do to persuade him that he had not called the correct phone number when he could not get me; that he had dialed it incorrectly.  With the confusion he is causing himself and others, it was decided that phone calls are not in his best interest right now.  It is impossible to know how long these times of not being lucid will last, but having access to a phone - to act out his confusion - is increasing his agitation.