May 31, 2011

Actions with words

"What is the kindest, most loving thing I can say or do right now?"  Linda McNamar.

Wouldn't the world be a different place if an intention for kindness was the place from which all people decided and acted?  But, too many times, instead of kindness, what people are thinking and acting from is:  "What about me?"  It is difficult to keep ego:  the:  What about me?, aspect out of our thoughts, actions, and intentions.  But, when we do:  what a beautiful world. 

We just returned from a train ride through Glacier National Park.  What a delight.  It was easier to accomplish than airplane travel nowadays.  All I had to do was get him on board, and there was not a time crunch for that, and then get him situation and both enjoy the beauty of one of the most scenic places on earth.  A lovely way to spend a long weekend.  And a break for both of us. 

May 30, 2011

Joy over despair

"And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy," Khalil Gibran.

A tall order for a way to lead one's life, and this sentiment is shared by other great minds.  Humans can reach a point where joy and pain are viewed and experienced similarly.  Detachment and nonjudgment are some of the practices that can get us to the point of seeing all of life as wondrous.  Having lived many decades, I can attest that each decade holds miracles, challenges, changes, hardships and blessings.  One can even view that each day holds these qualities.  Some spiritual teachers say that our suffering is caused by our adding meaning to a situation.  It would seem that when we can fully appreciate this life we have been given to live, we are in as much wonder with the challenges as with the joy.  Certainly, being a dementia caregiver provides us lots of opportunities to experience both.  There are such tender moments, as when Dwane said on Mother's Day that my children were lucky to have me as their mother or when we laugh together over his still-remaining wit.  And there are the challenges.  Is it possible to reach a point where we treasure both?

May 29, 2011

Self knowledge

"Knowing others is intelligence; knowing yourself is true wisdom." Lao-tzu.

Being in the role of dementia caregiver can be an opportunity for self awareness.  I have years of training and experience at analyzing the behavior of others as well as myself, but this time of providing dementia caregiving is giving me a time, away from the world, for even deeper exploration of myself.  What a wondrous gift this time is.  Having said "yes" to witnessing the death of a loved one provides the opportunity for the gift of self knowledge.  Exterior distractions are not gone, but with my professional life largely on hold, the exterior distractions are greatly diminished.  I create time every day to further my self knowledge, which is - in my opinion - a spiritual path.  I have always loved Socrate's quote, "An unexamined life is not worth living."  I intend to have an examined life, and I am using this time of being a dementia caregiver to facilitate that.  What are you doing with your time today?

May 28, 2011


"Hospice:  It's a special way of caring for people with terminal illnesses and their families." Hospice brochure.

Hospice is a service we, as dementia caregivers, can consider.  It is offered with either minimal or no cost.  They do have some general guidelines; usually need a doctor to predict death in about 6 months, and the person does need to meet some mobility and self care guidelines.  Hospice will come and evaluate if their services are appropriate.  Hospice provides equipment, respite care, and nursing services either in home or in a facility.  Hospice is a good alternative and affordable service that is widely available.  You can find out more about Hospice at:

Let us support each other by sharing resources that we have found that can help us all. 

May 27, 2011

Legal considerations

"Dream as if you'll live forever.  Live as if you'll die today," James Dean.

The above quote seems ironic in that James Dean did die young.  I wonder if he considered the legal considerations of death.  As dementia caregivers, it is in our best interest to do so.  (Disclaimer:  I am not an attorney.  Please consult your attorney for legal matters.)  Each of us is undoubtedly in a different place with legal considerations for us and for the person for whom we provide care, but it seems prudent to at least have in place for the person with dementia, prior to them getting dementia:  a will , a durable power of attorney, and a living will.  Very fortunately, Dwane and I got these in place many years ago, and I am so grateful because -- one of the considerations we have as dementia caregivers is to make sure that the person diagnosed with dementia is not taken advantage of.  If you do not have these three documents in place, I suggest you consult an attorney for what is best for your situation.  I consult with an attorney regularly and consider this person part of my "team of support" for both Dwane and me.  This person keeps in mind what is best for both of us.  A Durable Power of Attorney seems to be a document that is important as we, as caregivers, make important decisions in consideration of the welfare of us both.  Has your legal counsel given you any other suggestions for maintaining fiscal integrity and well being?

May 26, 2011


"Complaining is a way of reinforcing the mindset of scarcity and lack.  If something is wrong, take action to set it right rather than complaining. Even in threatening or difficult situations optimists are thankful for the challenges that help them overcome their limitations." Dr. Joan Borysenko.

Tall order perhaps.  I agree that complaining is a waste of time and may even bring negativity into one's life.  But to be thankful for the challenges that help us overcome our limitations?  Wow.  I am always looking for what I have to learn from any given difficult situation; now I can aim at at even higher intention:  being thankful.  Being a dementia caregiver is a difficult and challenging situation.  What can we be thankful for amidst this situation?  One thing for which I am thankful is that this situation forced me to remove myself from the world of over activity/over achievement.  Since I have a quieter (but perhaps no less busy) life, I have more time and energy to focus upon my own spiritual journey. That is a gift this situation has given me for which I am thankful.

May 25, 2011


"God give me the courage to change the things I can, the serenity to accept the things I cannot change, and the wisdom to know the difference," Serenity Prayer.

This very familiar stalwart mantra of Twelve Step Programs can be applied to whatever situation we have in life, to include living with and caring for someone with dementia.  The trick, of course, is to know the difference between those things that are our responsibility or opportunity to change, and those things over which we really have no control.  For instance, the person with dementia for whom I provide care was reluctant to go on an invited excursion because of his drooling.  Well, I can do nothing about the drooling (it is part of Lewy Bodies Dementia -- or at least part of his) which we have brought up to Mayo Clinic and to our local doctor.  There seems to be no medical answer or remedy, so I cannot change this.  But what I can do is suggest that he takes a small hand towel in a pocket to address the drooling when it happens.  I can also offer him the inside seat so that he is less exposed to others' viewing.  These suggestions seemed to address his anxiety, and he is no longer reluctant to go.  What are the things in your life you can change?  And, what are the things in your life over which you have no control? 

May 24, 2011


"To consider just one option is paralyzing; to consider between two options is a dilemma; to consider among three or more options is freedom," Virginia Satir.

Sometimes, in the role of dementia caregiver, it is difficult to see three or more options; but practicing that is critical for one's mental health.  We have opportunities to practice this daily, even in little things.  An example:  I need to go get his medication refills, and he wants to go along, but he is not ready to go when I want to leave.  There are probably numerous options, but some obvious ones are:  insist we go now (which always brings out the worst in him), do something else in the time I am waiting (like writing this blog), put off going until later or tomorrow, help him get ready to go (I have an intention of encouraging his independence in those areas in which it is possible.).  You can see the process.  For any given situation, it is very important to think of and consider at least three options.  It is necessary for our freedom -- and for our mental health.  

May 23, 2011


"Any kind of ending can leave us feeling "deserted," as if our lives have gone barren and dry."  Martha Beck.

In the June 2011 Oprah magazine, Martha Beck has an article on how to deal with the endings and goodbyes in life.  Some of it seems applicable to any loss, including the losses we experience in relationship to being dementia caregivers.  We can strive to be like Rilke, "Want the change.", which in some difficult situations may be too much to strive for, or we can implement some thoughtful strategies to help us through the difficulties.  Beck suggests that we release, rather than try to let go, something that is ending.  She suggests that we think about the difficult situation, and on each inhale of breath silently say the mantra, "Let it happen"; and on each exhale, say or think "Let it go."  She suggests continuing this for several minutes as a way to weed trauma and drama out of our lives.  Worth trying.  And not just in our roles as dementia caregivers, but in dealing with all the endings and losses of our lives.  Loss of prestige, image, physicality, freedom, relationships, professional status, etc. etc.

May 22, 2011

Shadowing behavior

"Fear is a constant companion of the person with dementia. Addressing fear can begin by asking yourself this question, "What can I do or say (or not say) to the person with Alzheimer's that will offer them reassurance and a sense of contentment?"  Angela Lunde, Mayo Clinic.

I think this statement is more true for people with Alzheimer's disease than those with Lewy Bodies Dementia, but "shadowing" can be a behavior found in both illnesses that can be suffocating for the care giver.  Shadowing is when the person with dementia will not let the care receiver out of their sight.  I call this "hovering".  Because we are not dealing with the typical memory deficits associated with Alzheimer's -- that is:  the person does know who we are and does know where he/she is, we probably will not have shadowing to the extent of those caregivers of persons with Alzheimer's disease.  Still, it is good for us to remember that some of the behavior we might find troubling is based on fear.  I find this shadowing particularly in social situations.  It is good for us to consider the situation from the perspective of the person with dementia.  How terrifying it must be to be aware that one cannot reliably solve a problem should it arise.  This awareness is probably nonverbal and maybe even not in consciousness awareness.  A technique I have implemented that seems helpful is to find a place for him to sit (he cannot walk or stand for long periods) and tell him I will be right back.  That seems to alleviate his fear.  What are some techniques you have found to reduce fear in the care receiver? 

May 21, 2011


"Acupuncture quiets your nervous system to soothe tension and ease sadness," Alex Moroz, MD, NYU Langone Medical Center. 

Hmmmm.  Another ancient procedure supported by current research.  Years ago I tried some acupuncture and did not feel benefits, but it is perhaps as in all fields, it depends on having a highly skilled practitioner.  And, how does one find such a person?  In the area where I live, word of mouth is a good way -- and according to Malcolm Gladwell (author of The Tipping Point), word of mouth is a good indicator everywhere.  Besides asking the opinion of those whose opinion we respect, it is important that the acupuncturist be licensed. 

So, in our journey as dementia caregivers, acupuncture may be another avenue of support for us to deal with the stress and sadness of this journey. 

May 20, 2011


"Just 5 minutes of gardening improves both self-esteem and mood." Environmental Science & Technology study findings.

This year I had considered not gardening because I thought it might be just one more thing I had to do, but while I was out sifting the rich black dirt between my fingers, planting good-quality lettuce seeds, and enjoying and learning from a good friend in the garden, I knew planting a garden would be a nurturing activity for me -- not a depleting one.  And then I read of this research.  Tending a patch of earth also supports us in being more tranquil, generous and hopeful.  It restores our well being.  Plus, I get to look forward to nutritious organic produce in a few weeks. 

As dementia caregivers we can be stretched pretty thin.  Gardening may be an outlet that replenishes you.  It is worth considering. 

May 19, 2011

Meditation and exercise

"Exercise and meditation have been shown to increase telomerase, an enzyme that lengthens telomeres, the ends of our chromosomes which control aging." ABC World News.

Another reason to keep active and to set aside time for meditation and exercise every single day.  It is not always easy.  Sometimes weather or schedules prevent us from doing these activities (unless you always exercise indoors), but to maintain the discipline is, I think, important.  Yesterday I planted our garden:  lettuce, onions, chard, spinach -- the early planters; and today I planted the not-yet-fixed greenhouse -- it may not keep the warmth in, but at least it keeps the deer out.  In addition, I find that I can fairly reliably meditate for 20 minutes before the care receiver wakes in the morning.  It is making a difference for me to have this discipline. 

May 18, 2011


"Life is always flowing, always changing and there is no security other than cultivating our sense of Oneness with God." Dr. Joan Borysenko.

Life is always changing when dealing with life with Lewy Bodies Dementia.  In talking with a dear friend and supporter, I realize that in most circumstances in my life I have always been working toward improved conditions and a more fully experienced independence.  For instance, as the parent of small children the structure we surround them with lessens as they develop interior autonomy.  But, it is exactly the opposite when providing caregiving for someone with dementia.  We are in partnership with the person with dementia in dismantling their life, in their regressing in independence and autonomy.  New ground for most of us, and it seems contrary to the natural course of events.  More and more, what Dr. Borysenko says is true for me.  There is no security in my life -- other than my relationship with God as I know him/her. 

May 17, 2011

Loving ourselves

"Love is the key -- loving ourselves as we manage the change, loving others as they participate with us, loving the life we live even when it is disrupted or difficult," Linda MaNamar.

Change is the constant for those of us living with and providing caregiving to someone with dementia.  Capabilities that were there yesterday, are not there today -- and yet, they may be there for a few minutes tomorrow.  Schedules that worked last week, do not work today.  Support systems that were taking care of things now have to be modified and increased.  As we monitor the well being of the person for whom we provide caregiving, let us not lose sight of self care and self love.  Like they advocate on an airplane that we put the oxygen mask on ourselves before we assist others to do so; so, too, must we as dementia caregivers take care of our own needs first.  This task before us is too difficult.  We will not survive it well without putting our needs and welfare as a top priority.

May 16, 2011

Tired of this

"To him whose elastic and vigorous thought keeps pace with the sun, the day is a perpetual morning,
 Henry David Thoreau.

But what about the times when one is unable to maintain "elastic and vigorous thought"?  Yesterday I cancelled going to a class that I wanted to attend because it would have involved being gone for a few hours, and Dwane has been experiencing much more confusion and poor judgment in recent days.  And, I found I was disappointed; even more, I felt imprisoned.  98% of the time I maintain a very good attitude, and a small percentage of the time I wonder -- how am I going to continue to stand this?  Compassionate?  Yes, toward myself as human.  Realistic?  Yes, as humans we naturally seek recreation and respite. 

Then my heart has a brief moment of recreation and thrill, as I see not one, but two, great herons fly by my window as I am typing this blog.  And I am grateful. 

May 15, 2011


"Success is determined by preparation meeting the moment of opportunity," Oprah.

As a dementia caregiver I find it impossible to prepare for every contingency.   Despite being here, things still happen that I have not anticipated:  lost documents, misplaced (lost?) medications, things thrown away that I meant to save, things put in the most unlikely places.  I try to give him privacy and encourage his independence, but that comes at a cost of things happening that are inconvenient if not dangerous.  It is humanly impossible to do all our business life and keep constant vigilance.  As a reader wrote, her husband gets up in the middle of the night and makes a mess in the kitchen.  We, as caregivers, need our sleep and recreation time too.  Finding it is a very challenging juggling act.

May 14, 2011

Managing the changes

"Love is the key -- loving ourselves as we manage the change, loving others as they participate with us, loving the life we live even when it is disrupted or difficult." Linda McNamar.

Living with dementia is an opportunity to deal with almost constant change.  Changes in lucidity, functioning, mood, mobility.  It is literally a moment-to-moment noticing of what is needed to address yet another change, and to realize that whatever way we address the change will be temporary.  I have found that having him push the grocery cart when we are shopping enables him to walk better.  Kathy, a reader, wrote that opening containers before putting them in the refrigerator, such as cartons of cottage cheese, enables him to access these things without frustration and mess.  What are some ways you deal with the changes (almost always decline) in functioning?

May 13, 2011


"Constant kindness can accomplish much.  As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate." Albert Schweitzer.

All of us probably know someone who is kind sometimes, but that kindness is not predictable.  From a psychological perspective, those people are ones who have not integrated their shadow side; and, try though they might, are unable to be consistently kind.  While we are all human and any one of us can become impatient and over react, I find in being a dementia caregiver that it is critical that to be consistently kind.  Things go relatively smoothly in our daily routine, unless I am feeling anxious and overwhelmed.  Then, when I need most for him to be cooperative, my being rushed is picked up and reacted to by him.  So, back to constant and consistent kindness.  That seems to be key.

May 12, 2011

Meditation benefits

"Your intention rules life and determines the outcome," Oprah.

I agree that one's intentions determine the path and the outcome of one's life.  So, too, the path of caregiving.  Having the intention of caregiving graciously helps me to actually do it.  Another tool to assist this is meditation.  Long applauded by some for its benefits, new research from Harvard indicates that meditation actually increases brain size, adding to the other known benefits of lowering stress and blood pressure.  So, meditation is something we can add to our day.  I find I can make time for it in the morning before Dwane wakes.  20 minutes.  It is simple.  Sit in a comfortable position, notice your breath, when your mind wanders (and it will) return to noticing your breath.  Some advocate for focusing on a single word or an object, such as a rose.  But focusing on your breath is easy and effective. 

As we provide care for someone with dementia, let us consider adding meditation as a support for our own health. 

May 11, 2011

Podiatrist options

"To have good mental health, a person should think of at least three options to consider in any given situation," Cathy Paulsen.
Yesterday we went back to the podiatrist for a recheck on that infected toe.  Good news:  the bone does not seem to be infected and the toe will not need to be removed.  And, more good news:  the podiatrist trimmed Dwane's toenails and can do that every nine weeks --- and Medicare pays for it!  I had no idea that a podiatrist would trim toenails, nor that Medicare would pay for it.  What a wonderful solution to this problem!  The result was so much better than when the home health nurse tried to trim them. 

Consider this medical service for the person for whom you provide dementia caregiving.  A great solution to one more task that befalls us.

May 10, 2011

Simple solutions

"Those who bring sunshine into the lives of others cannot keep it from themselves," James M. Barrie.

A reader, Kathy, suggested a simple solution:  her husband can manage storage bags that have zippers, but not the type that grip together.  A wonderful, simple solution which can avoid problems and frustrations.  I implemented another simple solution yesterday.  We have in several locations light switches which are close together but turn on lights for very different places.  It was a chronic problem for him to turn on the wrong switch and leave it on, not realizing he had turned on both switches.  In order to save electricity, our energy footprint, and my frustration at finding lights left on for hours, I have covered with clear wrapping tape the incorrect switch.  And, I just heard on Dr. Oz that drinking 2 ounces of Aloe Vera Juice daily helps with bowel function.  We have implemented this and hope it helps.

Whew!   Very easy solutions which can prevent problems.

May 9, 2011

Fear and action

"Always do what you are afraid to do," Ralph Waldo Emerson.

Some say there are really only two basic emotions: fear and love. If that is true, then as dementia caregivers we may want to be sure that our emotions and actions are based in love, and not fear. Goodness knows there is much that could be feared in this journey with someone with dementia: declining health, mobility, functioning, etc., etc. But, I believe it does us no good to reside in a place of fear. Let us make a practice of checking to see if we are residing in love, and let us see what a difference that makes in our daily lives.

May 8, 2011


"A loving heart is the truest wisdom," Charles Dickens.

I love the wisdom of significant souls who have preceded us in history. I just read some words of Chris Michels which state that our human relationships prepare us to be better humans by stretching our learning in tolerance, compassion and acceptance. Certainly dementia caregiving can stretch us in those areas, and others as well, such as: patience (a personal growth opportunity). Relationships provide us with opportunities to test the limits and depth of love and to become more evolved as humans. I have a dear friend who has said that sainthood or fully evolved souls can only happen in relationship. Relationships certainly hasten the process along. So, today can we be more open to giving and receiving love in relationships? I think we can.

May 7, 2011


"We can take a part of every day and consciously give ourselves over to a grateful celebration of the abundant blessings of our life," Dr. Joan Borysenko.

Dr. Borysenko writes that we in our current times have lost touch with celebrating the rhythm of the seasons and the week. The Hasidim, a mystical sect of Jews, celebrated in joy and song the Sabbath Day and the changing of the seasons, according to Dr. Boryensko. Where we live, I believe we still acknowledge (perhaps not celebrate) the changing of the seasons, because they are so definitive. But, as a culture, we pretty much treat Sunday like any day. Perhaps we cannot treat Sunday as a day of to give back to God as in times past, but we can set aside time every day to notice and be grateful for the many blessings in our lives.

May 6, 2011


"When the winds of change blow, some people build walls and others build windmills," Linda MaNamar.

So many changes lately. For us, moving back to our permanent home, finding out the winter-respite we have created for ourselves will not be there next year, neighbors moving, family members who greatly support me moving, friends surging forward professionally while I spend my life focused on caregiving, body changes (hiked 4 miles yesterday and felt physically like I had not done that in years!), changes in social networks with loss of some significant ones when we moved. So, is it windmills or walls? For me, right now, it seems to be both. I will focus more on nonresistence or building windmills. Perhaps gratitude will help.

May 5, 2011

Larry King show

"15 million unpaid caregivers give up their lives to care for another, and caregivers often become sicker than the person they're caring for — "they are under assault." Larry King television special: "Unthinkable: The Alzheimer's Epidemic."

"When you are a family caregiver, it's time to become a master of change ... I found my transformation into the world of caregiving was made easier when I remembered to breathe, believe and receive." Leeza Gibbons.

Good advice from Leeza. Breathe 10 purposeful breaths, believe that we can do this and survive, and receive help from others.

"Caregivers — make sure you don't do this alone."
- Laura Bush

May 4, 2011


"Following your feelings will lead you to their source." Gary Zukav.

There are so many losses associated with being a dementia caregiver. If the person for whom we care is our spouse, there is the loss of the marriage partnership. If the person is our parent, there is the loss of the parent/child relationship. We lose who the person was. There are other losses as well. Loss of social interaction as some people, out of their own discomfort, exclude us from gatherings. We have had a recent loss; the house where we go to have respite from the snow levels in the high country will not be available next year. There is the loss of the community we created in that setting, and a loss of knowing what we would do for next winter. There is the loss of freedom and mobility, as we both adjust to his declining abilities. It is important for us to recognize and grieve the many, many losses we have.

May 3, 2011

Starting the day

"One of the reasons we try to start our day with prayer -- what we place first in our time tends to pull the rest of the day with it," Rebecca Vitz Cherico.

I, too, begin my day with prayer. I know the day will contain plenty of challenges (life does, does it not?), so I begin the day with prayer -- in order for it to pull the rest of the day along with it. That is the same idea with my belief that our intention of how we want to be with this role as dementia caregiver carries our actions -- the intention carries the rest of the activities of the day. If our intention is to be gracious, we are more able to be gracious -- even when things go awry. Attitudes, intentions, prayer: they really do carry the rest of the day.

May 2, 2011

Our influence

"Those who bring sunshine into the lives of others cannot keep it from themselves," James M. Barrie.

As dementia caregivers we have ample opportunity to bring sunshine into the life of the person for whom we provide care. Certainly there are difficult times, but the overall attitude we bring to this caregiving task will carry the day. I have heard people say of others, "I just feel better after being with her." That is what we can be for the person we provide care for, and that is what we can be for the world.

May 1, 2011

A bit of history

"A splash of color on the hard road we have to travel," Sir Winston Churchill.

Although Churchill said the above under different world circumstances, it seems to apply equally to the historical wedding the world witnessed between Prince William and Catherine. Such fine ritual and how fun to be able to watch history unfold. A fun thing to watch - we recorded it so we could watch it at a convenient hour - for both of us.