May 31, 2012


"Courage is being scared to death but saddling up anyway." John Wayne

What a charming way to write a commonly quoted aspect:  that courage is doing what we fear, in spite of our fear.  In caregiving, as in other aspects of life, we may be called to do that which we fear.  Oddly, I feared putting Dwane into assisted living.  Although the caregiving was damaging my own health, I feared his reaction and that of his family.  I knew he preferred to be at home, as many people do; but, when we drove home from Mayo Clinic digesting the information about his diagnosis of Lewy Bodies Dementia, we agreed that he would remain home as long as it was feasible for me.  It had gotten to the point where it was no longer feasible for me.  Not out of selfishness, but out of self love and concern for his well being and safety, was the decision made.  It is not easy still, as we go through periods where he is very content there, and then periods where he wants to come home, sees no reason he cannot come home.  He seems legitimately unable to see the extent of the assistance he needs.  So, I need to see that for him.  At this point in life I choose to have the courage to choose life for me and safety for him.

May 30, 2012

Releasing Negativity

"Every negative thought or condition is erased from my experience and I walk in the joy of ever increasing good." Ernest Holmes

Lovely quote, and is it possible that we can walk in joy only by releasing every negative thought or condition?  That might be true.  We have all been in settings where people are talking about their ill health or dramatic surgeries, and they seem to be trying to top the horribleness of the tale ahead of them.  What does that serve?  It is often done when someone mentions that they are having a particular surgery or going to have a baby.  That seems an invitation to some people with tales of how horrible the experience was for them.  What if, instead, we focused on what was right about our health and lives and financial situations?  Not only would that be a source of comfort for the person who is going to have the surgery or deliver the baby; it is also good for our own mental health.  Part of my commitment to my own health is that I do not discuss 'horribleness' of any type.  I avoid movies or tv that depict violence or defeat; as I find I am unable to sleep after watching them.  I choose conversations that are supportive of the good for myself and others.  This is a commitment not only for my own health and well being; it is also a commitment for the health and well being of our planet and everyone/everything on it. 

May 29, 2012

Leap of Faith

"Living long enough, we each find ourselves surrounded by an old way of being, thinking or loving that is going up in flames.  But this is the passage of rebirth that we must move through if our lives are to unfold." Mark Nepo

"Living long enough" is such a lovely way to express our years in life, and living long enough does bring each of us to a place where we feel constricted by our current circumstances.  Or, we are in relationship with someone or some place of employment that moves on without us.  Rejection, betrayal, stifling circumstances:  all create an opportunity for us to take a leap of faith.  Nepo describes it like jumping from a flaming boat into the sea.  I have seen it like standing on a cliff over an abyss and stepping into the abyss in faith.  Either analogy works.  The important thing is to remember that we are being asked to step or leap in faith --- faith that goodness will result in response to our courage.  The first time I remember leaping in faith was when my parents dropped me off for college.  I stood on the sidewalk, after they had helped me move into the dorm, crying as I watched my old life drive away from me.  Then, as life went on, I experience love rejected, jobs that were ill suited, and most recently - living with someone with progressive dementia.  Day by day the person with dementia is leaving us behind as the disease claims more and more of him/her.  In every case when circumstances stifle us or others abandon us, our option is to stay stuck or to take a leap of faith.  The leaps of faith I have chosen have never disappointed me.

May 28, 2012


"Complaining is a way of reinforcing the mindset of scarcity and lack.  If something is wrong, take action to correct it rather than complaining." Dr. Joan Borysenko

I found that as the role of caregiver wore me down I was less and less able to be in the presence of complaining.  Recently a person, whom I have known for years and know by history that she enjoys horriblizing and drama, started to tell me how awful her time as a caregiver was (which concluded several months ago).  I explained to her that I was sorry she had had such a rough time, and I did not want to hear the details.  While this may seem harsh, it does not serve that person or ourselves to participate in 'ain't it awful' sessions.  It is not that I do not believe that it is sometimes therapeutic for people to express their feelings (after all, I have had a professional life that included helping people have therapeutic resolution of feelings), but I am not up to listening right now.  And, in fact, it is more therapeutic for the person if there is some investment -- like paying for it.  I am highly in favor of people seeking professional help to deal with feelings, trauma, and life's disappointments.  There is a big difference between talking about feelings with the intention of resolving the angst - and - complaining. Being stuck in complaining precludes taking action, and that is what mature adults do:  assess the situation and take action.  Certainly, we all might benefit for a chance to vent; as long as it is not ongoing.  What action could you take today to correct something which is bothering you? 

May 27, 2012

Self Responsibility

"I accept the responsibility for my own life." Raymond Charles Barker

As caregivers for someone with dementia, we are asked to take responsibility not only for our own lives, but for the life of the person for whom we provide care.  Tall order, and one that is not always welcome by the care receiver.  A friend told me recently that her spouse who has dementia told their son that she and another female caregiver were poisoning him.  Dwane in some of his adjustments to living in an assisted living facility told me he was going to turn me into the state's attorney for kidnapping.  So, we are put in a position where we take increased responsibility for someone else's life by necessity, and in some instances without their cooperation.  It is a good thing that safeguards are in place to protect against elder abuse.  It is also important that we make the best decisions we can in taking responsibility for our own lives and in ensuring the safety and well being of the care receiver. 

Part of taking responsibility for our own lives is to figure out -- and this may look different for each of us -- how to live our own lives AND be caregiver.  It is not in our best interest to abdicate our responsibility for our own lives.  That must be a top priority.  It does not serve the care receiver for us to abandon the responsibility we have to ourselves. 

May 26, 2012


". . the ways of others will fill the space we live in if we don't fill that space with our own authentic presence." Mark Nepo

It seems that one of the pitfalls of caregiving is the losing of oneself.  Much like what occurs in relationships in which there is an addiction.  The caregiver becomes so involved, dare I say entangled, in the caregiving that she or he completely loses track of the thread of her or his own life.  Now, seven weeks since Dwane moved into assisted living, just now I am beginning to feel new life and new energy in my own life.  I am so glad I honored the month of seclusion and healing that I intuitively knew I needed.  It was important to not push myself to do anything, after so much activity in the acts of caregiving.  Yesterday, I felt new energy about my own life; something I have not felt in a very long time.  This new energy comes from honoring the healing I needed from the marathon of caregiving.  It was helped along by doing a healing and releasing ceremony that a reader of this blog recommended to me.  Georgi suggested I do a healing of the energies in this house, which I did.  I believe this helped both Dwane and me adjust, with contentment, to our new lives.  Part of the significant fatigue for me in caregiving was losing sight of who I am.  As I return to my own authenticity (with the time and energy available to do so), I have renewed energy.  As caregivers, it is important that we not lose sight of our own lives.  What ways serve you in staying authentic to your own experience?

May 25, 2012


"People long for the warmth of conversation." Georg Kuhlewind

On of the greatest losses for me within the caregiving relationship was the loss of conversation.  As Dwane lost his ability to have reciprocal conversations, our dinner times fell silent.  We would talk, of course, but it was not the give and take of conversation.  A characteristic of LBD (Lewy Bodies Dementia) and other dementias is the loss of conversation.  How do we, as caregivers, fill the human need for the warmth of conversation?  Now, when I see Dwane, he is more 'up' and we can have brief glimpses of conversation.  With the varied periods of lucidity characteristic of LBD, he seems able to hold in reserve lucidity for our time together.  I saw this when we were living in the same house.  He could rally himself for a phone call or for a social event, and that is a good thing.  If you are a 24/7 caregiver, it is my opinion that you will need to get your need for 'the warmth of conversation' somewhere else.  Actually, any one of us in relationship with someone with dementia will be served to get our conversational needs met somewhere else.  I add one more criteria for myself:  the conversations I have must be positive ones.  By that I mean no whining, no complaining, no criticizing, no bullying or baiting.   I choose positive, interactive conversations to fulfill my need for the warmth of conversation.  How do you meet your need for conversation?

May 24, 2012

Our Purpose

"Our purpose is that which we most passionately are when we pay attention to our deepest selves." Carol Hegedus

Most humans at one time or another wonder if there is a purpose to them being here.  When we are in the midst of caregiving, the inordinate amount of time swallowed in tasks may preclude our thinking about what we care most passionately about.  We can also get lost in competition.  We can be living our lives joyfully and then notice what someone else is doing, and get caught up in trying to do as well.  People who have had a death experience sometimes explain when they 'return' that their only purpose is to love deeply.  As caregivers, I think we are served well to think about what that might mean.  I don't think it means that we give ourselves to the extent that we damage ourselves --- as our ultimate task is to love ourselves first.  Even in caregiving we can get caught up -- if not in the many tasks -- in comparison and competition.  We might know someone who chooses to do it differently than we do, and we might think we should be doing it that well too.  It is important that each of us remember that no one else can tell us how to do the task of caregiving; we have the ultimate freedom and responsibility of figuring that out ourselves.  What if our purpose is not to get lost in caregiving or comparisons, but to be so alight from within by who we truly are that we affect the world in a positive way? 

May 23, 2012


"You can never err by treating everyone with respect, thoughtfulness, and a kind word.  Being kind doesn't mean being soft." Colin L. Powell

Good words for us who are involved in caregiving for someone with dementia.  I think that not only can you never err by being kind; it is never acceptable to be anything but kind.  However, kind does not mean we let the person with dementia bully us, interfere with our plans for his/her safety, be disrespectful, etc.  We are still going through a period where Dwane is displeased with being in assisted living.  Others who have found it necessary to put someone in assisted living tell me that it takes three months for the person to accept it.  It can be confusing when the person with dementia is resistant to the type of care we, as caregivers, determine is needed.  And, trust me, they will be resistant --- no matter what level of care is provided.  A component of Lewy Bodies Dementia, as told to me when we received the diagnosis at Mayo Clinic, is the inability to be aware of their own decline and functioning level.  That leaves us caregivers to be aware and to make the best decisions we can.  It may help to be objective:  is the person for whom you provide care able to pay bills?  drive?  shop and prepare food?  get in and out of chairs/beds?  dress independently? If the answer is 'no' to any of those questions, the person cannot live independently.  Then, you as caregiver have the burden of making the decision on what level of care is needed for his/her safety and well being.  The safety and well being of the person with dementia; and your own. 

May 22, 2012

Careful what we think

"We are always affirming something." Ernest Holmes

What a lot of wisdom in just five words.  With our thoughts, words and actions we are always affirming something.  I have heard it said that one knows what one's true god is if we take a moment to notice our thoughts when idle.  If we take a moment to notice our thoughts when not occupied by something else, what are we thinking about?  Too often, I find I am thinking of a problem - how to solve it, or I am thinking of tasks that need to be done.  This morning upon awakening to the beauty, coolness and fog, I found myself thinking that the lawn needed mowing!  What do you find yourself thinking?  If we habitually think of problems or tasks to be done, we will find a host of problems and tasks to do.  How about instead we train ourselves to think thoughts of love, abundance, joy, goodness?  It is possible.  Psychologists state that it takes just 30 days to make something a habit.  Let us make positive thoughts, words and actions a habit in these next 30 days.  Today I will think of joy, well being, contentment.  It's too wet to mow anyway, and tasks can usually wait and take their turn.  The mowing will still be there; I do not need to think of it.

May 21, 2012


"When we feel crushed by the weight of our obligations, we get sick." Alice Domar, PhD

Stress damages our immune system.  Lightening our load buoys our immune systems.  So, how does one who is caregiving lighten the load of obligations?  Dwane moving into assisted living has dramatically lightened my badly-overloaded system and list of obligations.  But, it has not removed them.  I moved home from our house-sitting situation which I undertook to better meet Dwane's needs, to a mistakenly-disconnected phone, leaking roof with interior damage, stored vehicle with dead battery, trees damaged by mountain pine beetles, and Dwane's resistance to seeing that his needs have exceeded his being at home safely.  Content in the first month in assisted living, now Dwane has his bags packed (partially) and adamant about coming home.  That cannot happen.  His needs for assistance in his self care and safety are too great for a traditional assisted living center to even consider; and they are certainly too great for me to continue to try to provide.  It is imperative, even when we do not have support from others, that we do NOT allow this disease to take both us and the care receiver.  Because, it will.  It is imperative that we put as the top priority our own health. (of course, that is after assuring the safety of the person with dementia).  The Domar Center for Mind/Body Health suggests some tips for beginning to buoy our own immune system by eliminating obligations.  These suggestions include:  Say NO to requests, understand why we are tempted to take on a task -- the emotional payoff we might be getting by taking something on, let go of the need for perfection, make time for something fun.  Which one of these techniques can you commit to today?

May 20, 2012


"The research states clearly that we are not able to divide our attention as well as we think we can." Scientific American Mind magazine March/April 2012

Caregiving, especially hands-on caregiving, requires that we multitask continually.  There was never a moment, whether I was with Dwane or not, when part of my thoughts and mental energies were going toward:  was he safe?  were things all right?  I was hyper-alert for danger, and I got way too good at smoothing the way for him.  That is why - in my opinion - he is now, into the second month living at an assisted living facility, experiencing frustration and discontent.  Professionally I have very good skills at creating an environment that prevents problems, and I implemented that in my caregiving.  It certainly was not wrong to do so, but - now that this preventative approach is no longer smoothing the way for him, he is having difficulty reconciling himself to his limitations.  The multitasking and hypervigilance was killing me . . . .literally.  And, while it made Dwane's way smoother for several years, now he has the opportunity to come to grips with life when someone is not doing that for him.  It seems it would be good if there were a handbook to tell us how to proceed once the decision is made that assisted living is necessary.  But, alas, there is not.  Each of us needs to traverse this path on our own.  There is reassurance, however, from our own observations and those of the personnel at the assisted living facility.  I took Dwane out to hear a speaker last night.  With a bit more respite from the 24/7 caregiving, I could see he has more trouble walking now (shuffles more noticeably) and looked more disheveled, without me to be there to help him with grooming.  Both he and I need to know that it is what it is.  We are dealing with a terminal and progressive disease process.  It is necessary that he make his way in this, and that I make mine.  I can no longer smooth the path before him.  That does not mean that I no longer advocate for him; I do.  But, I cannot be there to prevent problems for him.

May 19, 2012

Following our Hearts

"Many studies have indicated that the heart is an exceptionally keen organ of perception -- sending messages, warnings, and information of all kinds before the brain responds.  The great peacemakers have always modeled knowing the heart first, then working with the mind." Melodie Bellagio

This is an important concept to keep in mind.  When we say that someone 'breaks our hearts', that can be literally true.  Stress is a real heart-killer.  The stress of caregiving can damage our hearts.  Even now with Dwane in assisted living, when I see him and he is belligerent, I feel stress in my heart area.  This is something all families face who are caring for someone with dementia:  are we going to have the stress of actual caregiving -- or are we going to have the stress of caregiving from some distance?  Either way is stressful, and we each need to find what is the best path for us and how to follow that path.  And we need to be gentle with ourselves as we find the way we want to be in every stage of this caregiving.  One way to do that is to listen to our hearts.  What message, warning or information is your heart trying to tell you?  Let us befriend our hearts and listen to the messages it is telling us.

May 18, 2012

65 million U.S. Caregivers

"You have to forgive yourself for doing the best you can (in caregiving).  Nobody gave you a handbook." Jai Pausch, wife of Randy Pausch and author of Dream New Dreams

The story of someone who provided caregiving, watched her husband die, and now - 4 years later has remarried.  Her book, which I have not yet read, is said to encourage caregivers to forgive themselves for not doing caregiving perfectly and to know we will dream new dreams at some point.  Her deceased husband's book, The Last Lecture, was instrumental in forming how Dwane and I responded to Dwane's diagnosis of a progressive and terminal illness.  Perhaps his wife's book will be a good read for caregivers.  At least it is hopeful to think that we may once again have a life we can call our own.  While none of us would wish the early death of the person for whom we provide care, the truth is that in too many respects our own lives are on hold while we deal with the many challenges and facets of this disease and caregiving someone who has the disease.

May 17, 2012

Meeting our own Needs

"Why do people never ask how I'm doing?" one wife who is quoted in The Caregiving Wife's Handbook by Diana B. Denholm

I have not read this book, but the excerpt I did read says the book talks about the anger, sadness, exhaustion of caregiving; plus some crucial survivors tips:  "Ask for help; get away occasionally; and, yes, have a little fun."  Sounds like sound advice; but - from experience I know it may be very hard to do.  One of the characteristics of Lewy Bodies Dementia heard from many caregivers is the strong resistance from the care receiver for the caregiver to have respite.  We still are dealing with that issue; even with Dwane in assisted living.  He still expects me to make the way smooth for him; to iron out every little wrinkle.  When visiting him today to take him to various appointments, I was struck by how much more built-in social interaction opportunities he has than I do -- unless I create the opportunities.  We not only need "to get away occasionally", we need to make sure our needs are met first.  Just like on an airplane when we are instructed to put on our own oxygen masks before helping others; we must meet the needs of our own well being before helping anyone else -- to include the care receiver.

May 16, 2012

"The federal government (of the United States) has declared war on Alzheimer's.  One American every hour is diagnosed with this disease." Peter Jennings NBC News

This could be promising for all of us who are dealing with any form of dementia, although the news story said the results of two large research projects are years away.  The news story did say something that I think caregivers have already known:  that the disease of dementia begins with brain changes about 15 years before blatant symptoms.  As I look back, I think Dwane began demonstrating very early signs of dementia in at least the last half of our 19 year marriage -- even though the diagnosis of Lewy Bodies Dementia was just 4 years ago.  With more people succumbing to dementia, perhaps we will all benefit from the research.  We can all hope.

May 15, 2012

Lack or Abundance?

"How often are we drawn into opposition with one another?  Certain, there are times that conflict is inevitable.  There is only one parking space.  There is only one donut left.  There is only one job in view." Mark Nepo

Our home is in an area, like most of western United States, where the forest is being devastated by pine beetles.  We chose several years ago to have a "Firewise" project done, where the trees were thinned to protect our home from both fire and the pine beetle infestation.  But, that is not enough.  Now we are choosing to have our pine trees sprayed at $14.00 per tree.  It has been interesting to watch peoples' reaction to the pine beetle problem.  Some say they are going to do nothing because this would not have happened if the National Forest Service had not mismanaged the forests in the first place.  I have gone to informational meetings, and I am not sure it is fair to blame the NFS.  But, even if it were fair, is it wise?  The facts are:  pine beetles are devastating the forest.  Our options are:  do we do something to protect the value of our own property? 

While this may be about pine beetles, it applies to the way we approach all of life's problems.  Do we blame and look for a scapegoat?  Or, do we accept the facts and make the best decisions we can based on those facts?  Which way do you want to live?  Blaming or creating solutions?  Do you see problems or do you see solutions?  Lack or abundance? 

May 14, 2012

Life's Journey

"The refusal to begin our journey doesn't keep us from having one." Julia Cameron

How true.  We all know people who seem to avoid the issues in their lives and live obliviously, perhaps we ourselves have done that at some point. But, as Cameron says above, that does not stop the journey from happening.  I recently took Dwane to the funeral of one of his colleagues.  The church was packed and the person who did the eulogy brought ripples of the laughter of understanding when he spoke.  Obviously, this man who died was well known by most in attendance.  Have you ever wondered how many people might come to your funeral and what they might say?  We have all been to funerals with a handful of people, and then again, to the funeral of someone of similar age, and there are many people.  It seems that the number of people in attendance must indicate the level the deceased had on people who knew him/her.  Perhaps it is a guideline with which to live:  How do we want to be remembered?   The journey of life is going to happen.  Do we want to fully participate in that journey?  That is our choice.

May 13, 2012

Our Beliefs

"Every decision we make every day of our lives springs from our beliefs, known or unknown." Melodie Bellagio

In recent years I have noticed that some of my unknown beliefs were the basis of decisions I have made.  I have always been a very hard worker, and this stems from an unknown belief passed to me by ancestors that one had to work hard in life.  But, what if that is not true?  This belief of 'having to work hard' also got in my way as a caregiver.  I did too much, took care of too many things, tried too hard to smooth the path for Dwane.  In work situations I have produced more work than my peers, and sometimes this led to resentments from them.  I have come to a point where I wonder:  is hard work necessary or even desirable?!  I'm not sure it is.  I now know that a balance of fun and work is what is preferable in life; and, if this unknown belief was dictating my decisions, how many others are there?  Reflection and openness will reveal those.  So, what does this have to do with caregiving for someone with dementia?  I notice that even now with Dwane in assisted living I need and want to resist the urge to make all things smooth for him.  His complaints are myriad:  bed too soft, bed too small, staff too hurried, breakfast too small, nothing to do.  It does not serve him for me to advocate each and every issue for him.  I will choose to discern what is important among his complaints and help resolve those; the rest are a part of his journey to handle.  Caregivers, let us not wear ourselves out trying to remediate every little thing in the care receiver's life.  It does not serve them or us.

May 12, 2012

Focus of attention

"Chronic attention to unwanted things holds you in a place of disallowing your physical well-being, as well as disallowing the solutions to other things you are focused upon." Abraham

While I do think we are not responsible for creating everything that happens to us, I also think we get more of what we put our attention upon.  What if our attention is really that powerful?  If it is, then would it not be prudent for us to be careful upon what we put it?!  Perhaps it is wise to think about what we want in our lives, and then to put our attention on noticing examples of those things we want.  For instance, I want well being, freedom, expression of creativity, loving relationships.  Today I will notice examples of those in my life.  Writing this blog entry is an expression of creativity, so will be choosing what I want to wear today.  Well being:  I will choose my activities with care so that I do not become overly scheduled.  I am driving to see Dwane today; I will enjoy the drive and the time with him in our loving relationship.  Freedom:  I will do only those things I want to do for this day. 

I am watching a little grey bird which has built a nest in a wreath I have hanging on the front of the house.  The other night we had a terrific hail, wind and rain storm at 1:09 a.m.  I was thinking how smart of that little bird to build her nest under the roof overhang, instead of in an exposed area. 

Let us be smart and thoughtfully decide what we want, then focus our attention on examples of those things we want, and choose actions that will create what we want in our own lives.  We cannot control all that happens to us in life, but we can be smart about creating the environment that will support what we want.

May 11, 2012


"To direct the mind towards the basic unity of all things and to divert it from the seizing of differences -- therein lies bliss." Tejo-Bindu Upanishad

Bliss.  I have never been sure what that was, so when Joseph Campbell tells us to "Follow our bliss", it has been confusing to me.  The above quote gives me some better ideas.  When our minds seize upon our differences from one another, we experience the opposite of bliss.  Many great minds have taught similar truths.  6th century Seng-Ts'an told us that the mind's worst disease is the war of against and for.  Certainly wars have been fought for those very reasons:  We are against you and for -- whatever our ideas or religions are.  Today you and I are dealing with another mind disease, dementia.  Is it possible to not be against or for that either?  Yesterday I took Dwane for PT (physical therapy) and OT (occupational therapy) evals.  The therapists had a lot of ideas:  weighted silverware so that he can eat more easily, a device for one's socks to help them go on more easily, exercises to strengthen the face muscles and help with drooling, other exercises to help him get out of a chair independently for longer.  None of these will stop the disease, of course, but perhaps that is just the point:  we cannot 'fight' against this disease; we can only finds ways to live more comfortably with it. 

May 10, 2012

Life is unfair

"Life is not fair, but unending in its capacity to change us; compassion is fair and feeling is just; and we are not responsible for all that befalls us, only for how we receive it and for how we hold each other up along the way."  Mark Nepo

There is current thought that we bring to us everything we experience by how we focus our attention and how we feel.  I think there is some truth to that.  Focus on ill health, and more ill health will be noticed to focus upon.  Conversely, focus on good health and more evidence of good health will be noticed.  But, perhaps is it egocentric to think that we have the power to bring any and all things into our lives.  I do not believe that Dwane on some level chose to experience dementia; nor did I choose a mate so that I could have the experience of caregiving someone with dementia.  Dwane does think that his years of putting himself through school pumping lead-containing gasoline might be the basis of his dementia.  That may very well be, but it does neither of us any good to regret the decision he made at that time.  He did what he needed to do to get a college education.  People did not know in those days how harmful lead was. We make the decisions that seem best in the circumstances of life based on our own resources and what is available.  Then we make the best of the consequences; those we may have foreseen and those we did not.  I like how Nepo frames it:  "we are not responsible for all that befalls us, only for how we receive it and how we hold each other up along the way."  Lovely. 

May 9, 2012

Different forms of dementia

"Dementia is a formidable adversary, and the history of efforts to treat Alzheimer’s has to temper any excitement about potential medicines for frontotemporal disease. The drugs for Alzheimer’s have been a disappointment, with just temporary effects on symptoms at best." Denise Grady, NY Times

An interesting article in the May 5, 2012, NY Times - sent to me by a friend.  The physicians quoted say that probably many cases of what is now thought to be Alzheimer's Disease, are actually other types of dementia.  The article talks about frontotemporal lobe dementia, which sounds similar to LBD.  Perhaps the similarity is in the parts of the brain that are affected, as with Dwane - it is the frontal lobe that is atrophying.  The quotes from the wives resonated with me:  silence at the dinner table, the absence of the spouse we once knew, looking back and seeing symptoms a decade before the diagnosis, personality change, accidents and mishaps.  Like LBD, frontotemporal dementia strikes at an earlier age and is faster in its path of destruction.  Perhaps the research being done in these types of newly-recognized form of dementia can help those of us who deal with LBD (Lewy Bodies Dementia) as well.   

May 8, 2012

Caregiving like Combat?

“Mothers of older autistic children had levels of the stress-related hormone cortisol similar to those found in combat soldiers and sufferers of post-traumatic stress disorder.  Long-term caregiving can have a corrosive impact on a person’s well-being.”  Michelle Cottle

According to this Newsweek (May 7, 2012) article, long-term caregiving is as stressful as being in combat.  Although this article is about parents of children who have autism, I would state that I believe caregiving someone who has dementia is as stressful.  It has been one month since Dwane moved into assisted living, and just now am I beginning to get some energy back.  The five years of caregiving, in which I was primary and pretty much 24/7, was incredibly depleting.  A reader, Kathy, wrote that Lewy Bodies Dementia is particularly stressful because of the extreme variations in lucidity and because of the person's extreme resistance to having the primary caregiver gone.  She wrote, as was my experience, that her husband complained if she was gone that she was leaving him with a 'babysitter'.  That was part of the stress for me:  Dwane's extreme resistance to having someone else here, and the reality that he could not be left alone (although he did not see that).  Lewy Bodies Dementia is unique, also, in that the person does not have the memory problems that are associated with Alzheimer's Disease, but does have very significant problems with comprehension, judgment and reasoning ---- and, at least in our case, the inability to see that he has those problems.  Knowing how very stressful this caregiving is, we must have the needed respite for ourselves.  In my case, the only way to get that respite was to have him live in a facility.  How do you find respite from your caregiving?

May 7, 2012

Overly Scheduled

"I can so easily become a slave to a schedule I create." Mark Nepo

On a recent day I had scheduled to go visit Dwane, it occurred to me that as long as I was out, I should go by the post office.  And, then, I would be near the store that sold the jigsaw puzzles with the bigger pieces that Dwane and I like.  Driving, I glanced down and saw I needed to fill with gas.  And, as long as I was going to that gas station, there was that car wash I liked nearby.  And, why not take a walk  while I am down in this lower elevation with dry ground? 

It is so easy for me to over schedule myself.  Part of that is being efficient and having an eye toward not wasting time and resources; but part of it is not being faithful to my own rhythm and natural flow.  In our culture, we are so encouraged to be busy.  Have you noticed many people when asked how they are, say with a sigh, "Busy."?  Being too busy is part of what wore me down.  Getting Dwane to his PT exercises, weekly trips to the store to buy just exactly what he wanted --- and then back to the store to get what he had forgotten to list, following up on his prescriptions, taking him to doctors and dentists.  Just this week I finally had the time and energy to follow up on checking on my own cataract surgery.  As caregivers we are overly busy and overly scheduled.  Even when the care receiver is in a facility, we still do all appointments, prescriptions, etc.  Plus juggling time to be with the person.  For me, it is important that I have some days that have no commitments.  That way I can recover.

May 6, 2012

Credit Card Scam?

"If money is your hope for independence you will never have it. The only real security that man will have in this world is a reserve of knowledge, experience and ability." Henry Ford
In paying bills this week, I looked over our credit card bill to see if there was anything unusual.  There was a $14.95 charge from a woman's clothing catalog, which I have not ordered from in a long time.  I called the number provided on my credit card statement and was told (once I got through all the automated options) that I had checked 'yes' on some online form that allowed them to charge me $14.95 monthly for their "rewards program".  Now, I will be the first to admit that I have been under a lot of stress; but I am quite certain I did not check any box agreeing to be charged $14.95 monthly from a catalog I have not ordered from in years!  I wonder if it is the same thing as happened to me some years ago in which I found I was being charged some monthly fee because I had not checked the 'not interested' box -- which I had not even noticed.

Caregivers, our time and energy (and money) is stretched thin; but I urge you to make the time to carefully check your credit card statements for anything unusual.  Granted, $14.95 is not a lot of money -- until we remember that it was going to be charged monthly.  Fortunately, the customer service representative agreed to stop the ongoing charge and credit my $14.95 back to me.  But, of course, I realize I will have to check next month's statement to make sure that actually happened.  I hope you can learn from my experience.

May 5, 2012

Balance of Energies

"As two hands cup water to the mouth, we need both male and female energies to drink fully of this life." Mark Nepo

As I strive to get energy back into my own life, I remembered from Nepo's writing the belief that some in mental health have that we each are composed of both male and female characteristics or energies.  Male energy is depicted as rational, stoic, unemotional; whereas, female is depicted as creative, in touch with one's emotions, relationship-oriented.  If our energy goes too far to the masculine, it is believed that we are too focused on achievement, out of touch with our intuition.  If our energy is too much feminine, we can be needy, weepy and not use logic to solve our problems.  Women who stifle their emotions, can become explosive when their emotions do come out.  Men can become hardened (some even think organically -- as in hardening of the arteries) when they stifle their feminine side.  Virginia Satir depicts these tendencies so well in her well-known book, Peoplemaking -- one of my all-time favorites.  The optimal way to live is to have balance, and to do that it takes befriending the side we have neglected.  These neglected aspects of ourselves may very well try to get our attention through our dreams or by physical symptoms.  So, how do we befriend our neglected aspects?  I think it begins with simply a willingness to see that we have within us all the aspects ever within any human. 

May 4, 2012

Vitamin D

"In the largest study of its kind, scientists at the University of Texas Southwestern Medical Center have linked low Vitamin D levels to a higher incidence of depression symptoms." Sam's Club Health Living, May/June 2012

Having our vitamin D levels checked is one easy way to support our own health.  Caregivers are at risk for depression with the depletion of joy, lack of freedom in doing what we enjoy, and being overly burdened by all the tasks to do.  I would have thought of myself as one of the last people to have low Vitamin D levels because I am outside so much, no matter what the season; but I had very low Vitamin D levels when checked.  Taking Vitamin D daily, if you need it, is one way we can protect both our bones and our moods.  A physician can check your Vitamin D level easily with a simple blood draw.  One physician told me that anyone in the northern hemisphere is likely to have low Vitamin D levels.  I am not sure that is true, but she was certainly right about mine being low.  I suggest, in your routine for caring for your own health, that you ask to have your Vitamin D level checked. 

May 3, 2012

Miracles in Practice

"Feelings of anxiety or guilt are the result of a lack of forgiveness.  Every unloving thought blocks the miracle."  Marianne Williamson

Marianne Williamson, who is well known for her work with  A Course of Miracles, says that miracles are based on three principles:  forgiveness, release, and atonement.  I think in this journey as caregiver for someone with dementia we have a lot of opportunity to forgive the person and ourselves.  If we are honest, there are times we resent that our relationship with this person brought us to this situation, and sometimes we need to forgive ourselves for how much the caregiving affects us.  Even with Dwane now in assisted living, a lot of my mental energy goes to his needs:  Did I call to get that prescription?  Would a neurologist be helpful with the drooling?  What could I do to make him more comfortable in that setting?  These thoughts coexist with the regular business of life.  Which shingles to choose for the roof repair.  Remember to call and schedule my own cataract surgery -- which has been needed for some time, but which I have been unable to do while providing caregiving 24/7.  We can choose to forgive ourselves and others, we can then choose to release the issue, and then we can atone by changing our behavior.  Where we have been unloving in any way, we can choose to be loving and kind.  According to Williamson, these steps open the path to miracles occurring in our lives.  I suggest we practice these steps, which are also based in sound psychology, and that we look for the miracles occurring in our lives. 

May 2, 2012

Evaluating our Choices

"In the end, it is not enough to think what we know.  We must live it.  For only by living it can Love show itself as the greatest principle." Wu Feng

When we move the person for whom we provide care into assisted living, the stresses do not go away; they are diminished and they change.  Now, instead of minute by minute and day by day assisting him, cajoling him, doing for him; the facility does most of that.  But, we still have our stresses.  Lewy Bodies Dementia has as one characteristic extreme variations in lucidity, and we still deal with that.  When Dwane moved into assisted living, we had a tender moment when we both cried and he said he knew that was the place he needed to be.  When I saw him yesterday, he was resentful, full of a myriad of complaints and wanting to 'get out of here'.  So, we still deal with the cajoling and the never knowing how the person will be when we go to visit.

And then there are the finances.  We need to figure out how to pay for the services if we are not going to provide them ourselves.  I have dramatically cut back on my living expenses.  In one I was helped out by the phone company mistakenly disconnecting, rather than putting on 'vacation', our phone while we were house sitting in a home that was better suited to meet Dwane's increasing needs.  So, I let that phone go.  I also stopped all tv except for the local channels.  In just these two actions I saved considerable money each month. 

When we consider how to deliver the caregiving services that someone with dementia needs, we need to have very honest conversations with ourselves.  Do we choose to deliver those services ourselves, thus saving money?  Do we choose to have paid and/or volunteer services come in to give us respite? (That did not work well for us because of Dwane's extreme opposition to someone coming in.) Do we choose to have the person live in an assisted living facility; and, if so, how will we pay for it?  It is a choice between our time and our money.  Whichever you choose, I implore you to choose an option which gives you sufficient respite.

May 1, 2012


"Vulnerability is at the core of fear, anxiety, shame and other difficult emotions, but vulnerability is also the birthplace for joy, love, belonging, creativity, and faith.  It becomes very problematic when as a culture we lose our capacity to be vulnerable." Brene' Brown

Brene' Brown's research indicates that we cannot numb our negative emotions and expect to experience the positive emotions.  She says that the problems facing our society:  obesity, addictions, being overly busy, over involvement with technology -- are all examples of how we as a culture are numbing ourselves in order to not feel our vulnerability.  According to her research, the way to experience vulnerability is by practicing gratitude. Vulnerability is an essential aspect of spirituality.  In this blog we have addressed, from other perspectives, how important practicing gratitude is.  How are you doing with your daily practice of writing 3 things for which you are grateful (or 3 miracles that happened to you this day)?  It is a good practice for many reasons.  Perhaps it can help us honor our vulnerability; because perhaps it is in being vulnerable that our true strength lies. 

Today I am grateful for:  1.  the recent moisture that has blessed the earth and plant life   2. the recent mini-vaction that allowed me the opportunity to connect with my son and his family  3.  my own returning to health and homeostasis