Aug 31, 2012

Handling Stress

"Fundamentally, what has always allowed us to weather the storm of stress is social connection." Dr. Oz

Social connection is challenging for those of us in caregiving situations, especially when you are providing the caregiving at home.  That is why I recommended life coaching via the phone for those who are housebound with caregiving.  Even if your loved one is in an assisted living or nursing facility, there are still demands on our time; and perhaps little energy left for social connection.  So, Dr. Oz recommends 8 habits that can help us handle the stress, and they are:  stretch first thing in the morning, do not skip breakfast, show up early (being late causes stress), replace 30 minutes of sitting with activity, increase intimacy, eat healthy snacks, don't sweat the small stuff, and be in bed by 10:00 p.m.  To increase intimacy Dr. Oz recommends writing a thank you every night to someone.  That could be part of the gratitude exercise we started in this blog some months ago.  Looking every day for three things for which to be grateful.  Then, we could write a thank you note about one of the things we noticed. 

Aug 30, 2012

Savoring the Moment

"Every moment and every event of every man's life on earth plants something in his soul." Thomas Merton

I have had a tendency in life to not be fully in the moment; waiting for my life to begin in a future moment that might some how be more exciting.  Or, I find sometimes that I have a list of to-do's going on in my mind rather than being present in the moment.  Many admired thinkers have advised us to savor the current moment.  Thomas Merton puts it a bit differently when he tells us that each moment and each event plants something in the soul of a person.  Perhaps the moment or event is more firmly planted when one is actually present to experience the moment.  Dr. Joan Borysenko has written that one task of the human journey is to "tame the monkey mind", the mind that jumps from subject to subject, swinging from here to there, always on the move, adrift.   Perhaps she is saying the same thing:  that to be a fully functioning human we need to train our minds to be quiet, receptive, alert.  Meditation helps in this practice, as does taking action steps to alleviate anxiety.  Let us consider stopping several times and day and noticing what is actually occurring in this moment; in this event.  We can build a habit of being more present. 

Aug 29, 2012

Creative Energy

"Creative energy, when not used, becomes anxiety that can make one very hungry." Rev. Bob Luckin

In the above quote, Rev. Luckin is referring to his tendency to overeat and be overweight as a reaction to anxiety, but the idea that unused creative energy become anxiety is applicable to many things.  Over the weekend I had the opportunity to discuss finances with some people:  a very rare opportunity, as most people avoid talking about money to about the same extent they avoid talking about sexual practices.  Robert Kiyosaki, author of Rich Dad Poor Dad, says in his book that talking about money issues is very different among those people who do well with money and those who do not.  People who do well with money talk about money, how they make it, the mistakes they have made, investment opportunities.  Whereas, most people keep their handling of money secretive.  The discussion we had about handling of money, which was open and honest, was a healthy use of creative energy.  Stewarding our money is a creative activity, and we benefit when we share ideas about how to steward our money.  There are many ways to exercise our creative energy rather than allowing it to turn into anxiety.  Rev. Luckin found "the courage to examine how my thinking was the thing I needed to weigh."  We can also find the courage to examine how our thinking can be channeled into creative outlets rather than into anxiety. 

Aug 28, 2012

Impact of Negativity

"Everything we consume -- whether it's the food we put into our mouths, the words that enter our ears, or the images that come into our eyes -- has the potential to nourish us or sicken us." The Word Among Us

I find the above quote more and more true in my life.  I can no longer read or view crude, cruel, violent or upsetting material without it disturbing me, to the point of not sleeping.  The other night a news program showed cows being mistreated in a meat processing plant:  the glimpse I got continues to haunt me.  Mental health professionals ponder what effect violent video games are having on our youth.  When we consider our overall health, a consideration is what we feed our minds.  This does not mean that we deny the tragedies in the world; just that we do not focus on them, continue talking about them, continue thinking about them -- unless it is in a way of how to prevent them from happening.  It is a good practice to notice what is right in our lives and to focus on those things, to talk about those things, and to think about those things.  The things which we see, hear, taste, experience do influence our health.  Either in a positive way or in a negative way.  It is our choice what we consume.

Aug 27, 2012

Empty Space is Freedom

"I do pay for all the inner and outer space I use.  In my outer life, I pay in dollars.  In my inner life (the mind space), I pay by having my mind cramped.  When I hold onto useless opinions, fears, and volumes of fictional stories about my life and others' lives, I find myself feeling worn out."  Rev. Bob Luckin

How very true.  We are led by society to believe that the more stuff we have, the happier we will be; but in many cases, it just means that we become our own "warehouse security guard".  How much of our time is spent cleaning, organizing, rearranging, making sure things are safe?  Do we have heirlooms that we feel obliged to take care of?  How much space would we have for creative pursuits if we were not earning money to buy, maintain and keep safe all of our possessions?  Of course we want the comforts of life.  What I am talking about goes beyond the comforts.  Someone once told me that a person should not keep anything that is not beautiful, useful, or that we just love.  What a good criteria to determine if we want to continue keeping something.  Are we keeping it because it is beautiful, we love it, or it is useful?   If not, perhaps it is time to let it go and open up more space, and freedom, in our lives. 

Aug 26, 2012


"According to the Kabbalah of mystical Judaism, the world was created out of ten emanations, or thought forms, that arose from the Mind of God.  Union with God can be attained by attuning to any one of these emanations.  They include:  beauty, mercy, splendor, wisdom, understanding, victory of the ego, discipline, ethics, nature and the mystical path."  Dr. Joan Borysenko

The path to maturity includes developing these ten qualities, and as caregivers for someone with dementia, we really need to develop them.  As the person with dementia loses his or her decisional capacity, we are called to make decisions on behalf of us both.  Woe to the person with dementia if the caregiver is too immature to consider what is the highest and best outcome for all people involved, especially the care receiver and the caregiver!  It took wisdom and courage to know that we were at the point of needing far more assistance, and for me to discern that the best assistance for us would be assisted living.  This decision is different for every person, and is highly relative to what one can do in the home environment and how much of one's time one wants to devote to the care and safety of another person.  Please; let us not judge one another for the choice we make when it comes time for more assistance!  The person with dementia will lose decisional capacity, of that we can be certain.  At that point it is our legal and ethical obligation to make decisions based on the person's best interest, as well as our own.  The person with dementia may very well not agree with the decision, but if the decision is made from wisdom and not selfishness, we can be assured we are making the best decision possible among the options we have.  Something to remember is that once we have the diagnosis of dementia, the options we have begin to diminish.  There is no perfect setting.  No perfect assisted living, no perfect nursing home, no perfect health care format; and - if we are honest - most of us would say that our own living situation is not perfect.  Our aim, then, is to choose the best among the options we do have:  with keeping the highest and best interest of the care receiver in mind, as well as our own well being. 

Aug 25, 2012

Free Stuff

"Money (magazine) waded through all the schlock and marketing come-ons to uncover more than four dozen great gratis goods and services."  Money Magazine, August 2012

As caregivers for someone with dementia, we undoubtedly find we need to watch the money flow.  We are paying so much for equipment, services, prescriptions and medical procedures that anything we can get for free can help out.  Money  magazine suggests that you talk with the "retention department" of your cable provider and ask what it can do to save you money. Cable companies are motivated to not lose customers to competitors and may match other offers.  Most libraries now have access to e-books.  Google Drive ( and Microsoft SkyDrive ( offer free cloud storage, eliminating the need to buy external hard drive backups.  Google Drive also has tools that mirror Excel, PowerPoint, Word, and Adobe Acrobat and are compatible with those programs -- for free.  Websites such as, and list items that are sometimes free.  BBC has a free 12-week language course in French, Italian and Spanish at  For those who are homebound with caregiving, it is fun to find some stimulating things to do without leaving home.  Many banks still offer free checking for seniors, but you may need to ask for it.  From personal experience, you can also avoid bank charges by using a credit union.  I hope some of these suggestions are helpful for you in managing your money. 

Aug 24, 2012

Advocacy Source

"And, with Medicare, observation services don't count toward rehab coverage."  Money Magazine, August 2012

The latest Money magazine has a good article on the increasing tendency for hospitals to put a patient on "observation" rather than admit the person.  The magazine article cites several cases when a person thought he or she was admitted as patient (in which case Medicare would cover expenses and subsequent rehabilitation), but was instead in the status of "observation" --- in which Medicare will not cover rehab services.  The problem stems from the rule that hospitalization stays are covered under Medicare A, while observation is covered under Medicare B, the outpatient plan.  If a person is in a hospital (admitted/not just observed) for three days, then transferred to skilled nursing care, Medicare covers the skilled nursing care.  And, because supplemental insurance kicks in only when Medicare pays, you will be stuck with the bill if you are in observation status instead of admitted status.  So, what to do:
1.  If you or your care receiver go to the hospital, make sure you know whether it is an admittance or an observation.
2.  If you have trouble getting Medicare to pay, there is an advocacy service:  Center for Medicare Advocacy at

The mere fact that there exists a Medicare advocacy service, implies that we need to be alert to having our services paid when rightfully due, and to plan our services to meet Medicare A rules. 

Aug 23, 2012

Too Tight a Schedule

"I'm only lost if I'm going someplace in particular." Megan Schribner

One of the results of caregiving can be a schedule that is too tight.  Have you ever thought why vacations can be so restoring?  Sure there is a change of scenery, the discovery of the new, time for fun; but perhaps the greatest gift of a vacation is an unencumbered schedule.  As caregivers much is asked of us.  We are scheduling things for the care receiver's life, while trying to manage the business of our own -- oftentimes while trying to juggle earning a living among the many, many responsibilities.  That overly-scheduled calendar aspect of caregiving is one of the most depleting:  too many obligations, and not enough time that is unencumbered or unscheduled.  It is imperative to create some time for ourselves -- we can call it recreation, meditation, exercise; whatever we call it, we need to have time each day that is not committed -- that is ours to relax within.  Vacations come rarely for caregivers, but we can give ourselves 20-30 minutes a day, or ideally more,  that is meant just to replenish ourselves.  Yesterday a reader suggested I get a massage.  Even though she lives at a distance, she was even able to specifically recommend someone, and I could get in that afternoon.  It was just what I needed in an overly-busy week.   I was able to relax and just 'be' while someone provided loving service for me.  We do so much for others; it is a special treat to receive loving attention from another.  I recommend it.  Can you get a massage this week?

Aug 22, 2012

Life Coach Recommendation

"Imagine someone whose only purpose in being with you is to help you create the most wonderful life possible, someone on your side to encourage you to take actions which can transform your dreams into reality.  That is a Sojourner's Guide!"  Richard Kiefer, M. Div.

Some readers have asked me how to find a reliable life coach, so I am recommending one:  Richard Kiefer, M. Div. who can be contacted via his website at:   Richard calls himself a Sojourner's Guide, rather than Life Coach, and his services are broader and deeper.  I can personally testify that Richard supports people to increase the quality of their life, even in the challenging situations created by caregiving for someone with dementia.  I highly recommend him.  He provides his services by phone, which is a blessing for those who have difficulty leaving the home because of responsibilities or other limitations.  To learn more about Richard, you can visit his website, and I have provided the following to better acquaint you with his services.  As a qualified Life Coach, I am exposed to the skill of many other Life Coaches, and I can attest:  Richard is the best.
About Richard

Sojourner's Guide is a composition that is both a designation and a process evolving from Richard's having served in the capacities of spiritual advisor, mentor, counselor, teacher, coach, minister, and consultant spanning nearly four decades.


Aug 21, 2012

Our Experiences Shape Us

"The truth is, that as the lungs make use of the air we breathe, the heart makes use of the things we experience."  Mark Nepo

How true.  And, it is our choice what to make of our experiences.  It seems our society wars after happiness, but we need to feel both ends of the continuum of emotion.  Mark Nepo gives a clever analogy that we cannot drink water and say we are taking only the oxygen and not the hydrogen.  The same is true with life.  We cannot pursue only happiness; we must be willing to feel everything along the continuum between happiness and grief.  We cannot drink just of sorrow either and truly live life.   Are you feeling all the feelings this rich live provides?  Life is like a great smorgasbord.  It provides experiences where we can feel joy, sorrow, amusement, relief, sadness, loss, happiness, fear, anxiousness -- among many.  What if part of the purpose of life is to experience the emotions our experiences arise in us? 

Aug 20, 2012

Ethical Conduct

"The foundation for spiritual maturity is ethical conduct.  In Eastern traditions people don't begin to meditate, to engage in exercises of introspection or study learned texts, until they show the virtues of honesty, discipline, humility, charity and right conduct."  Dr. Joan Borysenko

What is ethical conduct for caregivers?  It would seem that it needs to include ensuring the safety of the care receiver, maintaining health and nutrition within the parameters of the progressive illness of dementia, and treating the person with respect and dignity.  Some people suggest it is also our responsibility to provide social opportunities and stimulation.  Perhaps.  Equally important to the ethical conduct to the care receiver is the ethical conduct toward ourselves.  It is not possible for one person to provide safety, maintain health, and provide social opportunities and stimulation without it taking a toll on the caregiver's health and well being.  We must decide what we want or feel we need to provide for the care receivers, but we must keep paramount our own health and well being.  We have an ethical obligation to do so. 

Aug 19, 2012

Life Coaching

"Please remember, it is what you are that heals, not what you know." Carl Jung

What an interesting observation from a renowned psychiatrist.  It is not what we know, but who we are, that is healing -- to ourselves and others.  Most often when people are hurting, they just want to be heard.  Listening, truly listening, is a very rare commodity in our modern world.  Undoubtedly, all of us have seen couples at dinner, both on their cell phones.  Haven't you found yourself formulating your response when someone else is talking?  That is not listening.  Listening involves emptying ourselves of our agenda to hold the space for another person to talk.  The optimal situation is when both persons are able to really listen to the other.  A therapist once recommended that couples talk for 6 minutes every day.  For 3 minutes one would talk and the other just listen.  Then the roles would be reversed.  This can be a powerful relationship enhancement tool.  The most recent Alzheimer's newsletter from Mayo recommended that we not reason with (a favorite tool of mine) the person with dementia, but - instead - to use short, simple sentences.  I agree, even if my first tendency is to attempt reasoning.  It is also a mistake to hope that the person with dementia can really listen to us.  A characteristic of dementia is a folding in upon oneself that usually precludes the person really being able to be interested in another's life.  So, where can we busy caregivers find someone who will listen to us?  Life coaching over the phone is one way.  Life coaching has become very popular and accessible.  Should you decide to try it, I recommend you find someone who has completed a certification program.  Since life coaching is a new profession, there are few regulations and almost any one can call themselves a life coach.  It is important that we engage someone with good skills.  It is also important that we have someone (or several) in our life who will listen to and support us.

Aug 18, 2012


"Worry is the guest we put up for the night who turns out to be a serial killer.  The root of worry is our awareness - a false awareness it turns out - that we know how things ought to be." Fr. Harry Cronin, C.S.C.

Worry seems to be a habit of humans, to a more or less degree depending on the individual.  Mark Twain wrote the amusing observation,  "I have spent most of my time worrying about things that have never happened."  Isn't that true if we are honest?  That most of what we worry about does not - thankfully - come to pass?  But, think of the time wasted in the worry.  Worry, sadness and anger are damaging to the vessel which carries them.  We each have witnessed the damage that worry and anger have on a person's heart and overall health.  Perhaps a better option is to trust ourselves sufficiently to know, really know, we can and will handle any life situation which comes up.  Sometimes it helps to consider - what is the worst possible thing that could happen (in the theme of what is worrying us)?  When we consider the worst possible thing, usually we realize that, of course, we could handle that.  Another strategy for dealing with worry is to remember how we successfully handled a similar situation in the past.  What can you do to eliminate worry from your life? 

Aug 17, 2012

Levels of Care

"It is better to be violent, if there is violence in our hearts, than to put on the cloak of nonviolence to cover impotence." Mahatma Gandhi

The official levels of care, as cited by insurance companies, for persons with dementia are:  home care with or without paid aides, day care facilities, assisted care, and nursing home.  But, within the assisted care there is quite a variation -- which we as caregivers need to know.  Several of the assisted living centers I contacted required the person to be very independent.  They would not even manage medication.  It seemed that they included a room and meals, almost what I would call independent living.  To my surprise, some of the assisted living centers would not even consider accepting Dwane, as they saw his needs too great for their services.  It was confusing, because he also was not in need of nursing home care.  At least in this state, there is a level of care that is between assisted living and nursing home.  In our case the facility calls itself assisted living, but they do help with showering, dressing, getting out of chairs; and they do manage medications. They have a license for both assisted living and nursing home, so are able to blend services.  A Mayo Clinic newsletter once said that most caregivers wait too long before placing someone with dementia into assisted living.  I agree.  And, then we find out some assisted living centers do not provide enough services to care for someone with dementia.  There are also long waiting lists at some facilities.  So, it pays for us caregivers to do our homework.  If you think at any point you may want assisting living, it is a good idea to check out what is available, what services they provide and if they have a waiting list.  Even getting on the waiting list is not infallible, as we were on for one facility; but when I called back the management had changed and they had no record of request.  Please do not wait until you are desperate, as too many caregivers do.  Please check into what facilities are in your area now, so that you can plan accordingly if you think that at any time home care will no longer be an option.

Aug 16, 2012

Lift Chair

"Don't be too timid and squeamish about your actions.  All life is an experiment.  The more experiments you make the better."  Ralph Waldo Emerson

The assisted living facility personnel has said that Dwane now needs a lift chair because of his difficulty in getting out of a chair.  For those of you in this position, I would like to share what I learned in the process.  The facility said that the doctor would order the chair, and then insurance would pay for half.  That turned out not to be the case.  The nurse said Dwane does not meet the insurance criteria -- which according to her is that the person is unable to walk once he or she gets out of a chair!  Amazing!  So, I have looked for lift chairs.  At furniture stores they are $700 and up with a delivery charge.  A friend told me the Walgreen's sale flier had a lift chair, which I checked out.  One can order (sale is good Sat Aug 12 to Sat Aug 18) a lift chair online for $499 with free shipping "over the threshold".  What a great solution.  I ordered the lift chair and arranged for it to be delivered directly to the assisted living facility. 

Aug 15, 2012

Supporting Our Own Memory

"Meditators with at least 4 years of practice have a higher degree of gyrification, the folding in the cerebral cortex that's crucial for memory and consciousness."  UCLA research

The stress of caregiving can take a toll on our overall health, to include our memory.  One way to counteract both the stress and the damage it can do to our health, is to meditate.  Some people are turned off thinking that meditation is part of a religion, but it does not need to be.  The act of meditating -- becoming silent, trying to maintain no thoughts (some practitioners suggest we notice the thoughts and just let them go), and deep breathing -- can be viewed just as a relaxation practice if one is uncomfortable thinking of it as spiritual.  The key is to maintain the practice.  Proponents suggest at least 20 minutes every day of deep relaxation is beneficial to our health.  It is easy to think we don't have time for meditation, but consider this:  perhaps it is better to consider that our lives -- the quality of them -- depends on practices such as meditation.  There are many, many resources to help or guide us in meditation if we have trouble practicing it on our own.  I suggest we implement this as part of our daily routine.  Our lives may depend on it. 

Aug 14, 2012

Social Interaction

"Someone to tell it to is one of the fundamental needs of human beings." — Miles Franklin

Social interaction is a basic need of humans, and an especially difficult one to meet as a caregiver for someone with dementia.  With all the responsibilities that go along with caregiving, it is difficult to work in fun and interconnectedness.  We have lost some or most of the relationship we had with the person who now has dementia, and tasks may prevent us from meeting those needs elsewhere.  One way I have met my need for support is with phone calls.  I have traded services with a life coach, so that I have an hour devoted each week to having someone to listen to me.  One of the aspects of dementia is a folding-in-upon oneself, so that the person is not as aware of the well being of those around him or her.  We can meet the need to be listened to by trading services with a life coach.  I would suggest you choose a life coach who has completed a certified program and one who is willing to provide services by phone, since it is very difficult for caregivers to get away.  One of the most valuable sources of support I have created for myself has been this hour where I have someone to talk with, who is there just to listen to and support me. 

Aug 13, 2012

Meaningful Experiences

"Someone who is focused on having meaningful experiences has about 30% less cognitive decline over 10 years.  Positive behaviors promote cognitive health as we age." Patricia Boyle, PhD, Rush University Medical Center, Chicago

According to research, most of us will eventually develop plaques and tangles in our brains (symptoms of dementia), but this research says we can counteract the effects of those plaques and tangles by living a life with purpose.  So, what constitutes living a life with purpose?  Perhaps it is different for each of us, but it would certainly entail cultivating rewarding relationships and experiences, living a life that benefits not just ourselves but also others, continuing to learn and be stimulated, fun and relaxation, some meaningful spiritual practices, and a focus on overall health.   What does living a life with purpose mean to you?  This research suggests it is important for us to know what purpose means to us, and to live our lives in line with that purpose.  Our brains are counting on it. 

Aug 12, 2012

Care of Caregiver

"Dementia is a condition in which a person's ability to nurture their own social needs is undoubtedly compromised. Consequently, depression, paranoia, agitation, irritability or even aggression can be expressions of unfulfilled social needs."  Angela Lunde, Mayo Newsletter
In this newsletter, Angela Lunde, covers the last of the areas that people with dementia fail to get their needs met, and that failure may result in behaviors such as those listed above.  The three areas she cites are health, environment and social.  It is her position that if we help the care receiver meet his/her needs in those three areas, then there is better behavior.  That is perhaps true, although some of the behavior I see appears to be a railing against the disease itself or an attempt (probably unconscious) to keep me 'locked in' as caregiver.  But, we as caregivers, probably have tried to help the person with dementia meet their needs socially, in physical health, and in their environment.  We do that with providing outings, taking them to health providers, and providing adaptive equipment.  But, what about the needs of the care receivers?  That seems to be as overlooked, or more over looked, consideration than the needs of the person with dementia.  As caregivers, we are focused on meeting the needs of the care receiver -- to the point that our own needs do not get met.  I have not had a physical exam for 2-3 years, because we spend so much time taking him to health providers I have not had the energy to make my own appointments.  Just yesterday I felt I finally had the time and space to make my own appointments for examinations and to schedule the cataract surgery I have needed for some time. 

It is good to consider the needs of the person with dementia, but not at the expense of our own needs.  Let us make sure we too are taking care of our own health, having some social connectedness in our lives, and living in conditions that support us.  At least the person with dementia has us to monitor his or her needs.  Who do we have?  Perhaps just ourselves. Then, let us be as good at looking after our own needs as we are at providing caregiving.

Aug 11, 2012

New Medication

"There is a good chance your primary care physician is not familiar with the second most common type of progressive dementia in the elderly: Lewy body dementia (LBD). Despite its prevalence, people with LBD have to see an average of 3 doctors before the LBD diagnosis is made." Lewy Bodies Dementia Website

I took Dwane to a new local neurologist who specializes in movement disorders.  She started him on the Parkinson's movement medication, Sinemet.  It is hoped this will help him be able to get out of bed more easily and relieve the numbness and heaviness in his legs.  She also offered the option of botox injections into his salivary glands to stop his excessive drooling.  These botox injections are not permanent, but it might be worth trying to give him some relief.  The problem, according to her, is that people with LBD do not automatically swallow like the rest of us, so the accumulated saliva falls out of their mouths.  This is the most mortifying aspect of LBD for Dwane, so it might be worth trying.   He has been on the medication for only 1 1/2 days, but so far, it has caused him to vomit.  Apparently, the medication needs to be taken on an empty stomach or at least without any protein,  The doctor has now recommended applesauce first to help him tolerate the medication.  We will see if it can be tolerated this way.

Aug 10, 2012


"Transformation always involves the falling away of things we have relied on, and we are left with a feeling that the world as we know it is coming to an end, because it is."  Mark Nepo

There are times during the period when we are caregivers that we have an opportunity to transform ourselves.  It is possible to become too identified with our role as a caregiving, and in that case, it can involve letting that image of ourselves fall away.  It does the care receiver and us no benefit if we lose ourselves in the caregiving role.  It does not necessarily mean no longer being a caregiver, but I think we who are caregivers are served by periodically assessing if we need to let some aspect of our personal identification with caregiving fall away.  That could include a person who feels needed by caregiving, or a person who wants to look good for others by caregiving:  whenever it is a role that is prominent, our true authenticity suffers.  One thing is certain:  we are caregivers right now.  But, that does not need to be our identification.  We can be first human, and caregiving can be among the roles we have in life:  not the only one nor even the primary one. 

Aug 9, 2012

Problem Solving

"I find that the only problems I am unable to solve are the ones I keep holding onto."  Bob Luckin

There is truth in the above statement; as well as the idea that we cannot solve a problem with the same mindset in which the problem was created.  An example is my trying to solve Dwane's periodic dissatisfaction with living in assisted living.  One day I will go over to see him and he is angry, demanding a vehicle to drive and wanting to come home.  Another day when I see him he is pleasant, amenable, fun to be with.  This is perhaps due to the severe fluctuations in lucidity that accompany Lewy Bodies Dementia, but -- even knowing this, it is hard for me.  I find my fingers are white knuckled on the steering wheel driving to see him, because I never know how he will be.  Perhaps the answer for me is in the above quotation.  I need to let go of trying to solve the problem of his periodic dissatisfaction with living in assisted living.  I cannot fix his attitude for him.  I cannot change the fact  he needs supervised living.  He sometimes says to me that it is not his fault he has Lewy Bodies Dementia.  While that is true, it is equally true that it is not my fault either --- which is what he is seeming to imply.

My choice is to let go of the problem of his recurring dissatifaction, because the only way it is really a problem is that I hate to see him unhappy.  But his happiness is his choice, and only he has power over that choice:  no matter what the circumstances.  I think it is also important for me to realize that there is nothing I can do (neuropsychologist evals, doctor's orders, evidence in his life) that can permanently convince him he needs assisted living.  Apparently this periodic dissatisfaction with living in assisted living will be a recurring theme.   A theme for him to deal with. 

Aug 8, 2012

Love What You Do

"Let the beauty of what you love be what you do."  Rumi

Joseph Campbell says it similarly when he says to "follow your bliss".  Even with caregiving, which may seem thrust upon us and something we would never have chosen, it seems important that we are happy doing it -- or we need to not do it.  That does not mean that every thing will be easy.  For instance, I am now once again needing to fight for his longterm care insurance coverage.  I did not realize that once a year a doctor has to re-certify that he needs longterm care.  (as if dementia is something a person recovers from!!)  The form has been with the doctor since early June and not completed and sent back to the insurance company, so the insurance company appears to be using that as an excuse to not pay.  And, these payments and premiums are adding up, $14,000 so far, until the form gets back AND is accepted by the insurance company.  Our longterm care insurance is with a company that is considered one of the best.  It has been such a headache that I can't imagine if we had a company that was inferior.  So, in times like these it is hard to love what we do, but imperative to do so.  It seems that if we cannot find an attitude of being happy with what we do, then it is better if we get someone else to do it for us.  In our case I am asking the insurance fraud department of the State Department of Labor and Regulation to assist.  Every state has one, and I think it is important that we not allow the insurance companies to get away with appropriate nonpayment.  Someone said insurance companies have a policy:  Delay. Deny. Defend.  We bought longterm care insurance to assist us.  The insurance company needs to do what our policy states it will do.  Involving the insurance fraud department of the State Department of Labor and Regulations did really help.  The insurance company promptly made a decision they should have made two months ago.  So, if you have trouble with your longterm care insurance company, just mentioning the State Department of Labor and Regulations Insurance Fraud Department can get good results. 

Aug 7, 2012


"Graciousness of heart shows up as flexibility, spaciousness and a "live and let live" attitude." Dr. Joan Borysenko

A good definition of graciousness, and a worthy goal for anyone, but since it is the title of this blog:  a special challenge for those of us who live with dementia.  Amazingly difficult, sometimes rewarding, often challenging, sometimes touching:  living with dementia.  Can we meet this challenge graciously?  Can we be flexible, spacious and live and let live?   As humans, probably sometimes we can and sometimes we cannot.  It probably also depends on how lucid the care receiver is, or conversely how paranoid and belligerent.  It must be hard to have dementia, and a minister recently said to me how much compassion he had for the person with dementia, as he feared dementia himself.  It is fine to have compassion for the person with dementia, but not at the expense of having compassion for the caregiver.  The person with dementia certainly has frustration, anxiety, feelings of frustrations as he/she is unable to do what used to be easy.  But.  It is the caregiver who carries the responsibility, the knowing that things are very, very different, the burden of making all the very difficult decisions.  What is appropriate is to have compassion for both caregiver and care receiver. 

Aug 6, 2012

Gentleness and Strength

"Nothing in the world is as soft and yielding as water, yet for dissolving the hard and inflexible, nothing can surpass it.  The soft overcomes the hard; the gentle overcomes the rigid, everyone knows this is true, but few can put it into practice."  Tao Te Ching

How can we be gentle, yet strong, with the care receiver?  We are going through another period where he is very dissatisfied, complains of most everything, wants a vehicle to drive.  When he is belligerent, I tend to get tight in my chest and frustrated ---- this is ground we have covered over and over.  I remember a dear friend whose father had Lewy Bodies Dementia telling me that even after some time in assisted living her father would tell her he wanted her to take him home.  So, perhaps it is good for me to realize this periodic dissatisfaction may never end.  That way it does not surprise me any more.  Reasoning with him does not work in these times of less lucidity, so what I do is the therapy tool of "broken record":  just saying the same thing over and over, such as, "The neuropsychologist recommended that you be in assisted living."  It serves neither of us to argue, so to repeat a sentence that is true seems to help alleviate the circling and swirling of thoughts and arguments. 

Aug 5, 2012


"Purpose is a guiding light.  Choose a purpose, and don't be attached to having it be the right one."  Rev. Bob Luckin

As caregivers, it can help us in the day to day ups and downs to have a purpose.  I chose early on that my purpose would be to live with dementia graciously and that I would write this blog to give support, encouragement and accurate information out of my psychological training and experience to other caregivers.  Caregiving is a very isolated role.  Some caregivers have family who come in and give respite, other caregivers go to support group meetings, others have staff at a facility or coming into the home who are of support.  Still.  It is an isolating role, and the difficult decisions must be made by us -- out of love and clarity.  I know that I do better in the caregiving role when I remember my purpose.  Even now when I am in another impasse with our longterm care insurance, I do better remembering to do this graciously.  What is your purpose, your guiding light, in your caregiving role?

Aug 4, 2012

Too Busy Doing

"Bob had slipped from being a "being" into a "doing."  When we lose the sense of beingness, the heart beats with less vitality."  Bob Luckin

A dear reader commented that it seems I am busier doing things now for Dwane than before he moved into assisted living.  Some days it seems that way myself.  I keep thinking the appointments will slow down, but maybe they won't --- if his physical complaints do not abate.  It is interesting to me that he has so many physical complaints, but is unaware of his cognitive declines.  It is as if he is over responsive to physical symptoms versus cognitive ones.  Or, perhaps he brings up physical needs as a way to get the attention he wants.  Behavior does serve a purpose, even for someone with dementia.  The purpose may just not be obvious, but behavior does serve a purpose.  As caregivers, I think we need to be careful we are not reinforcing behavior that is not good for them or for us.  For me, I am going to think about all of the physical symptoms he wants addressed.  Is it necessary for his well being?

Aug 3, 2012

Rules for Being Human

"There is no better than 'here'.  When your 'there' has become 'here', you will simply obtain another 'there' that will, again look better than 'here'.  Illuzone from ancient Sanskrit

A dear friend sent me the "Rules for Being Human", of which the above quote is one.  We are going through another period where Dwane is very dissatisfied being in assisted living, complaining he cannot live at home, wants to come home for a shower, has appeared to have forgotten our agreement to take the neuropsychologist's recommendation from the evaluation --- which was that he needed assisted living and plenty of supervision.  This is always difficult for me:  his dissatisfaction.  But, isn't it also a mindset?  Any one of us can be dissatisfied where ever we find ourselves.  If I were to focus on some negative aspects of where I live:  the isolation, mud, snow, ice, dust; I could choose to be dissatisfied.  I try to remember that we each choose our attitudes when he is dissatisfied about every little thing in his life.   As caregivers we can do a lot to make the lives of the care receiver better, but . . . . . . we cannot do everything.  Only that person has the power to choose his or her attitude.  And, it helps me to remember that he complained about many, many things when he was living at home too. 

Aug 2, 2012

PT and OT services

"The spine is a thing of beauty:  a sleek stack of 24 vertebrae, cushioned by 23 disks, neatly arranged into an elegant structure that's able to bend, twist, and shimmy at a whim.  In a marvelous feat of biological engineering, it gives us both strength and flexibility.  Yet back pain is rampant." Anne Underwood in Prevention, August 2012.

As if Dwane does not have enough difficulties to deal with, an MRI confirmed very significant low back spine difficulties.  The MRI technician told me his was "the worst spine she has ever seen", so we will try to address this with PT (physical therapy) services, which I was told by my sister today can be done in the assisted living center (his doctor had told me they could not be done there, and I have been driving him to the appointments.).   He will also see a neurosurgeon in a couple weeks, but he is not a good surgery candidate.  He was severely psychotic after his knee surgery from the pain medications.  It will be a difficult decision:  how to address his pain and weakness in his legs, without more invasive procedures than necessary. 

Aug 1, 2012

Writing Things Down

"We will grieve not, rather find strength in what remains behind." William Wordsworth

As is true with many people with dementia, Dwane can become very anxious if he thinks he does not know when things are scheduled.  To support him in this, my daughter bought him a white board.  I write down on it all of his upcoming appointments:  day of week, time, and date.  Beside the white board is a calendar.  This has helped immensely to diminish his anxiety about when something is occurring.  He has so many appointments:  primary physician, dentist, PT, audiologist, neurosurgeon, podiatrist --- that it helps us both to keep these appointments in mind.  It also helps him to be ready for an appointment since he takes so long to get dressed and ready to go any where.  When he went in to assisted living, I also wrote down for him all the addresses of those people he might want to keep in touch with, as well as our home phone.  Even though memory difficulties, per se, are not a primary component of Lewy Bodies Dementia, this writing down of details is a great way to alleviate anxiety -- which is a component of LBD.  Writing things down, plus the Talking Books, plus the adaptive clothing and equipment all help in dealing with current physical and cognitive limitations.