Chocolate: an excuse to enjoy

"A new review of previously published studies adds weight to the claim that chocolate is good for the heart.
Taken together, five of seven studies included in the review linked high chocolate consumption with a 37 percent reduction in cardiovascular disease risk, a 31 percent reduction in diabetes risk and a 29 percent reduction in stroke risk when compared to low chocolate consumption." Katie Moisse, ABC News.

What good news for those of us who love chocolate.  My favorite is dark chocolate covered almonds.  Yum!  It is good to find helpful and healthy ways to help us deal with the stress of caregiving, and to support our own well being.  So, I will hold up a dark chocolate covered almond in salute to you all.

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A new review of previously published studies adds weight to the claim that chocolate is good for the heart.
Taken together, five of seven studies included in the review linked high chocolate consumption with a 37 percent reduction in cardiovascular disease risk, a 31 percent reduction in diabetes risk and a 29 percent reduction in stroke risk when compared to low chocolate consumption

Laughter

"While the science isn't rock solid, there is evidence that laughter helps boost your immunity," Health Magazine Sept. 2011.

Another good reason to find opportunities to laugh.  I have also read that laughter is good for one's stomach muscles, brain chemistry, and general well being.  Having my sister here recently was a wonderful opportunity to laugh.  We have a similar sense of humor and memories that caused us both to laugh until tears flowed.  I have read that the tears from laughter are chemically different from those of sorrow, and that both are beneficial in helping the body release tension.  So, whether it is with a good friend with a similar sense of humor, or a movie you know makes you laugh, or a comedy act you find funny --- let us find reasons to laugh. I do have one guiding rule with laughter; it is only funny if it is at no one's expense.  We each differ in what we find funny.  What makes you laugh?

Two ways to support happiness

"Feeling socially connected and being outside are the biggest sources of cheer." Dr. Richard Ryan, University of Rochester.

With the time-constraints that being a caregivers entails, it is sometimes hard to make sure we get enough of either social connection or time outdoors.  I can manage time outdoors every day with my early morning run, but being socially connected with supportive and positive people is far more challenging for me.  It is sometimes not possible to get away for coffee or lunch with a friend.  One way I do keep socially connected is by making sure I have weekly conversations and/or emails with those people who are lifelines for me.  How do you keep social connections and being outside in your busy days?  

Blogging

"Blogging or any kind of expressive writing, such as journaling, can dispatch your demons and make you feel happier." Health Magazine Sept. 2011.

Writing has always been my joy, and I write this blog to help support my own behavior in doing this caregiving job in the way I want to, and to provide support and good information to others in caregiving roles or roles that have accompanying stress.  With my background of degrees in English and psychology, and years as a mental health practitioner and spiritual sojourner, I have accumulated a combination of skills that I hope provide support and inspiration.  If not writing, what ways do you "dispatch your demons"?  Some find solace in yoga, gardening, nature, dancing, painting, sewing or knitting.  What do you have in place to express yourself? 

Neck massage

"The National Center for Complementary and Alternative Medicine reports getting a neck massage is an effective pain buster," Health Magazine Sept. 2011

Perhaps between trips to the doctor, trips to the pharmacists, paying bills, doing yard work, doing laundry, preparing meals, etc., etc., you do not have time for a full massage.  The above research indicates that even just a neck massage can bring us relief from tension.  Who is on your team to support your health?  Research tells us that this job of caregiving can be very detrimental to our health.  Besides yearly visits with a physician and the recommended tests, I see an alternative medical person, a reflexologist and a body worker --- not nearly as often as I would like, but I see these people as critical to my health.  They, and my spiritual advisor, are a necessity for me.  Who do you have to help you care for your health and handle the stress of caregiving and life? 

Higher behavior

"I am my own understanding of God."  Emma Curtis Hopkins.  "My life, my behavior, and my experience don't lie --- they paint a vibrant picture of what I truly understand God to be." Leta Miller.

What if that is true?  That we are expressions of God, and our lives reflect our understanding of God.  Would that make a difference in how we choose to live?   Would we be less judgmental of others and treat all others with respect and dignity?  Would we live generously, confident that God will provide what we need?  Would we be consistent in our self care and self regard?  Let us consider what we believe God to be, and let us consider that we are expressions of God.  Are we living our lives Godlike?!  If not, we can always choose higher and better behavior for ourselves. 

Opportunity versus difficulty

"A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty." Winston Churchill.

Have you ever stopped to notice whether you viewed a difficulty as an opportunity or an opportunity as a difficulty?  For the past two weeks we have had a mouse in the house, and, I know, people say you never have just one mouse -- but I think we did.  It took me two weeks and four trips to the store for purchases to add to our mouse arsenal before I caught him.  Having a mouse in the house, which readily ran out even when we had guests, became quite a focus for me.  A lot of time and energy went into trying to figure out how to "out wit" the mouse.  He could take bait off the traps and leave them unsprung.  Amazing! 

Is having a mouse in the house a difficulty or an opportunity?   I clearly saw it as a difficulty while he was in the house, but having him in the house became an opportunity for me when I used it as to mouse-proof the exterior of our house.  A handyman spent several hours yesterday making sure all chips and nicks along the foundation were plugged.   So, one mouse created an opportunity for me to prevent other mice from coming in.

How can we make this situation of dementia be an opportunity for us instead of just a difficulty?

Nonjudgment

"I release expectations of myself and others, knowing that each is expressing Spirit perfectly in every moment.  Free of judgment and flowing easily with divine order, I bless all those whom I encounter and celebrate each one's unique way of being a godling."  Leta Miller.

A godling; what a fun image.  Free of expectations and judgments?!?  My, oh, my, what a tall order.  It is a goal I have had for a long time, and it is a continuing journey for me.  A large part of my discouragement in the caregiving capacity is that I have expectations of Dwane.  If I am honest, I realize I expect him to be kind, to be able to do some tasks -- such as shutting the dishwasher that I had ready to run - without messing it up; and to want to participate in a plan that is best for him and for me.  I will vow once again to set my expectations aside.  In what way can you recognize yourself as a godling?  In what way can you recognize the care receiver as a godling?

Life's path

According to the Kabbalah of mystical Judaism, the world was created out of ten emanation, or thought-forms, that arose from the mind of God.  These paths  . . . . help guide the unfolding of our soul according to its own predilection.  They include beauty, mercy, splendor, wisdom, understanding, victory over the ego, discipline, ethics, nature and the mystical path." Dr. Joan Borysenko.

What a lovely thought.  Of the ten emanations listed above, which one or ones would be the guiding lights for your life?  I can see in my own life the influence of all ten.  In my spiritual tradition, one might think of these as ways that can help one develop fully as a human - in a spiritual sense. Let us today think about which of the ten emanations can bring us closer to our true potential, and let us immerse ourselves in those emanations.

Hope

"Whenever things go monstrously wrong, the first casualty is always hope."  Father Harry Cronin, C.S.C.

Realizing that someone we love has dementia is an occasion when we also realize that things have gone monstrously wrong.  And, when we choose or have forced upon us the role of caregivers, that adds another layer to what has gone monstrously wrong.  What about our own lives?  What about the plans we may have had.  I don't know about the rest of you caregivers, but I feel as if my own life has been put on the shelf for three years.  All my plans, hopes, aspirations, dreams have either been shattered or shelved.  So, how do we get hope back in the picture?  It helps me to believe that there is a divine plan of overall goodness.  On a day-to-day basis I cannot always see the goodness, but I believe that life is inherently good.  I once complained to a friend about not having as much energy as I wanted and that I did not want to develop poor health, and she reminded me that we must all die of something.   Ahh.  So it seems.  And the person for whom you provide care is dying of dementia.  We must make sure we do not also die of it by caregiving ourselves to death.  Hope.  Let us never lose sight of hope.  Let us also not lose sight of our own lives.

Kindness

"What untold grief of heart might be relived by words of cheer and forgiveness." Science of Mind.

Isn't the above statement true?  Both for ourselves and for others toward us?  I practice making amends if I know I have hurt someone else, but not everyone does.  It seems that it is in families, whether those are biological or work or created, that the most hurtful words are exchanged.  We can help make the world a kinder place by practicing giving words or cheer and forgiveness, and the best place to start is toward ourselves.  Thoughts that cheer us, activities and friends who cheer us.  And forgiveness.  Unforgiveness is like a cancer that destroys us.  Let us forgive those who have hurt us.  Life is too short to hold resentments. 

Self care first

"In case the oxygen mask falls from the compartment above your head, put your own oxygen mask on first and then help others around you," Airline Safety Guidelines.

Something very important for us caregivers to remember.  Take care of our own needs first, or we will not be around to take care of any other needs.  Some of the support I have put in place has been disappointing.  The handyman seems to need too much input from me; is unwilling to be self reliant.  The home health care person seems reticent to draw Dwane out.  The relative who came to town to be of support to me is so busy having fun that she has forgotten her offer.  The neighbor who was delighted to be paid to be a companion for Dwane now thinks he resents her being here.  (Of course, he resents having anyone but me here!).  So, back to the drawing board.  Back to setting up support that can give me respite. 

Childlike wonder

"My father's childlike wonder and lovingkindness have lighted my heart and my way for all the years of my life," Dr. Joan Borysenko.

When I was a child and walking in the pasture with my father, I noticed circular areas in the grass that were flattened down.  I asked my father what they were, and he said "That is where the fairies dance at night."  How utterly charming.  Though I knew and my father knew I knew that what he said was not accurate, we both enjoyed the whimsy of it.  His gentle, childlike wonder charmed me then and charm me now.  I am reminded of that when on my morning runs I see the areas flattened in the grass where the deer have lain overnight - circular, just like where fairies might have danced in the moonlight.

When life is difficult, what childlike wonder can fill us with awe?   On a recent morning run, I heard the impatient yelps of coyote pups demanding their breakfast.  I stopped and smiled at the wonder of it.

Trying new ways

"Orville Wright didn't have a pilot's licence," Richard Tate.

Not only did Orville Wright figure out on his own how to fly; others even in our time have had trouble flying the same type of airplane he first flew.  It is amazing to me how others can figure out new ways of being that break ground for us all.  We, as dementia caregivers, can break new ground in our own way.  We can do this job of caregiving in ways that do not adversely affect our own well being, while also providing dignity to the person with dementia.  According to the research at Roslyn Carter's Institution, only a third of caregivers do this role and come out the other end better because of it.  I want you and me to be among those who come out the other end of this even better than when we began this journey.  Whether you are dealing with caregiving or some other challenging life situation, we can come through this period of time more mature, more serene, more loving human beings.  With support from each other, we can be among those who face and deal with this difficulty, and finish it with improved health and well being ourselves.  That is my goal for all of us. 

Attitude toward problems

"Welcome problems and eat them for breakfast," Alfred Montapert.

I have to confess that I do not always welcome problems and deal with them first thing in the morning.  Perhaps life would be easier if one could develop that attitude.  For me, it depends on the problem and how many come at a time.  I can deal with many problems by facing them directly, but if there are too many at once, it can be overwhelming.  And, that is part of our human experience.  As dementia caregivers, or in dealing with other challenging life circumstances, it is important to remember that our reserves for coping with life and its challenges are already being taxed.  Adding a few problems to that:  like rescheduling doctor appointments, getting plumbing fixed, closing a loan -- can put us over the top and overtax our coping capacities.  So, what to do?  I think we need to be very gentle with ourselves.  Solve each problem as we can, arrange for enough support and respite for ourselves, and discern what are important problems to deal with and what we can just let go.  We cannot deal with every little thing when we are overtaxed, so let us deal with what is important and let the rest go or hire it done or ask a friend for help. 

Rae Lyn Burke

"Since being formally diagnosed with Alzheimer's Disease, Burke has launched a new era in her scientific career:  as a patient advocate and a test subject." San Francisco Chronicle

God bless those people who give their lives in action on behalf of us all.  Rae Lyn Burke is a scientist who became aware that she was developing Alzheimer's Disease, and she has since devoted her time and talents to advocating for people with dementia and being a patient in a clinical trial test for a vaccine that she had earlier helped to develop.  Last night we watched the movie, Changeling.  There are some unpleasant scenes and topics, but I was so touched by the true story of the woman who helped put in place the laws that do not allow people to be easily (and unnecessarily) put into mental institutions.  I think that we as caregivers, too, are doing many of our actions on behalf of us all.  Kathy, a reader, wrote that she is always educating others about Lewy Bodies Dementia.  We also demonstrate for others how to treat with respect people with mental capacities that are different from the norm and deteriorating.  Like Kathy said in a comment to this blog, we can change the attitudes and level of understanding of other people, one person at a time.  Hats off to each of you.   Heroes and heroines for making a positive impact not only for the person for whom you provide care, but for society at large. 

Coping as Caregiver

Today's Mayo Clinic Alzheimer's Newsletter has some great strategies for coping, which Angela Lunde says comes from accepting the changes in the person caused by this terminal and progressive disease.  You will notice in the last suggestion, Angela Lunde says that people with dementia cannot control their behavior.  That is not my personal experience, but it may very well be the reality for most people with dementia.  Here, copied and pasted, are the suggestions Angela Lunde says we need to accept to cope better as caregivers for someone with dementia. 

• People with dementia experience loss and loss of control. Feeling out of control naturally leads to behaviors of agitation, irritability, anger and depression. The more often caregivers tell the person what he or she can't do, the more the behaviors tend to escalate. (My response:  I try never to tell Dwane that he cannot do something.  I try, instead, to structure the physical environment to support what he can do and avoid those he cannot do.  I happen, also, to think that depression is not an automatic response in the person with dementia -- anxiety has been more our problem.)
• Dementia symptoms include a decline in the ability to communicate effectively through words, so behaviors such as irritability and aggression fill the void. In other words, there's a message behind the behavior. (I agree that behavior is telling us something, but I disagree that irritability and aggression need to fill the void of communication problems.  I like the idea of the speech therapist where one puts into writing points to communicate.  There are ways to communicate, even if processing and language are a problem.)
• People with dementia are not lying, lazy, aloof or disengaged. Rather they can't remember or process information because of the changes in their brain.
• Lack of insight into one's limitations is a common symptom of Alzheimer's disease. People with Alzheimer's disease often can't admit something is wrong with them. This is due to how the disease affects their brain. (This has been a huge problem for us, but I have also noticed that Dwane begins to "give up" some things that are difficult for him.)
• The physical changes in the brain cause new behaviors that people with Alzheimer's disease aren't able to control. They aren't choosing to be behave this way.  (This certainly can be true.  Apathy seems to be a companion to dementia, and I had a relative with Pick's Disease (an early onset type of dementia) who became unable to know whether he was hungry or satisfied.) 

Axona & Podiatrist's services

"Until more is known, the Alzheimer's Association doesn't recommend the use of medical foods, including Axona, for the treatment of Alzheimer's disease."   Mayo Clinic Alzheimer's Newsletter.

Axona, a medical food supplement, is thought by some to furnish the brain with nutrients and help the cognitive functioning of people with Alzheimer's, but as you can see from the above quote, that idea is not supported by the Alzheimer's Association.

I wanted to tell everyone about a service that I have discovered of which many people seem to be unaware.  Medicare will pay for a podiatrist to trim someone's toenails every 9 weeks.  I discovered this in the midst of the foot infection that Dwane had.  When the podiatrist was treating the foot, he told me about the option for getting Dwane's toenails trimmed at his office.  This is so much better than the home health nurse option for which we were paying $60 a month.  The last time the home health nurse trimmed Dwane's toenails, we had blood and toenails all over the place.  It was also immediately after that that Dwane had the life-threatening toe and foot infection -- and I am still convinced there was a connection.  So, for safety, ease and economy, consider contacting a podiatrist for the toenail care of your care receiver. 

Creative respite care

"Thank you, God, for this good life and forgive us if we do not love it enough." Garrison Keillor

It is hard to love one's life if one is inundated with difficulties, does not have time for self care and recreation, and is dealing with a difficult personality in the care receiver; but it is important that we do find a way to love our life.  One thing I am trying is very creative respite care.  I have an agreement with an older widowed neighbor who will come to be a companion so I can get a break.  A friend gave me a brilliant idea of a handyman who will do repairs and also look after the safety of Dwane.  He came for the first time yesterday, and it did not prove to be a respite for me as he had too many questions and too many errands for me to run for parts, but I am going to have him come once a week and he is getting an amazing amount of things fixed around here.  He discovered our dryer vent was nearly plugged, so he may have saved us from a bad house fire.  Then, one day a week I am having an agency come, and I am going to have them do light housekeeping - in addition to companion to Dwane.  It has been stressful getting all these things in place, but I am sure as the schedules smooth out and Dwane grows accustomed to their being here, we will both benefit.

And, now let's talk about money.  We live in a rural area, so this might not apply in other areas.  I am paying the people who provide companionship $12 an hour, and the handyman $25 an hour.  Yes, I will have to keep an eye on our budget.  But, is money more important than my health and my life?!  It is worth it to me, and I now have 3 half days scheduled where I get respite (hopefully!!) and some services provided as well!   I am pretty delighted with the possibilities this provides!

Readers' comments

A reader wrote that she disagreed with me about complaining and yelling being a part of violence, and that she believed we could not expect our care receivers with LBD to control their behavior.  Thank you so much for your respectful disagreement, Rosemary.  Perhaps it is because of my psychological training and years dealing with individuals who qualified for special education, but I believe we can expect our care receiver with LBD to control - to some extent - negative behavior (I am also willing to consider that perhaps our situation is not as advanced and/or his brain is not as damaged in the area of self control as some other individuals with LBD).  I also believe that anything that does not enhance life is part of the continuum of violence.  Perhaps violence is wording it too strongly; it is, however, behavior I want to diminish.  Behavior modification is effective even with those individuals who have compromised executive functioning.  Of course, there will be times of upset for us both, and both of us may momentarily engage in behavior - like sharp words - that we prefer not to.  I guess my rule of thumb is if this behavior is becoming chronic:  Then I want to look at changing something:  my own behavior, the physical setting, or something.  It is a high priority for me to live in harmony, and for about 99% of the time Dwane and I do. 

Self care

"When we begin to think more about the interdependence of things, we take our place as one more star in a magnificent universe, rather than as the sun around which the universe revolves.  Our heart grows peaceful." Joan Borysenko.

It seems to me that it is a balance between being too self concerned and not enough, and I would venture to guess that most of us providing caregiving lean far too much toward self sacrifice.  The past two weeks have been inordinately stressful for me, with pre-op appointments, operation, and extra care provided to the care receiver.  I was talking with a dear friend who has witnessed and provided care for someone with Lewy Bodies Dementia, and she stressed the need for respite for myself and self care.  I can tell when I am overly wrought because exercise falls out of my schedule, as it has this week.  So, today a neighbor and friend is coming for a couple hours and I will take a long bike ride -- with no worries about his safety and well being.  I also called to schedule a massage in the near future, and I have finally arranged to have home health care services come in.  He is opposed, of course; but I must do it for me.  I have waited too long.  I promised myself that I would not allow this to affect my health nor to bring out the worst in me; and it has been doing both recently.  Please, caregivers, do not delay in getting enough support in place to give you adequate breaks.  And, don't forget that in the U.S. in every state there is a Department of Social Services (called differently in some states) within which is a Department for the Aging.  They are a remarkable resource and have programs that can provide some financial support for respite care, called Caregivers Respite Program.  We can do this only with support which enables us to have some life of our own.   Let us support one another and put in place the support we need.

Smile

"A megawatt grin from a loved one can produce the same brain waves as learning you won $40,000." Molly Raisch.

Ahhh.  The importance of positivity; both giving and receiving.  Molly Raisch says that one study found that those who smiled the most lived an extra 7 years!  So, let us surround ourselves with people who smile, and let us smile ourselves.  Other research I have read has said that one can even change one's own mood by smiling.  The body/mind does not seem to distinguish the difference between a spontaneous smile and a smile by choice.  So, let us choose to smile.  Our bodies, our minds, our health will be improved by it. 

A mind ravaged

"O, what a noble mind is here o'erthrown!", Shakespeare in Hamlet.

If my memory is correct, I do not think Shakespeare was referring to dementia in the above quote, but the line strikes me as reflective of what happens in dementia.  A good reliable mind is o'erthrown.  Characteristics that we used to be able to count on as part of the essence of who the person is are no longer reliable.  Truthtellers become people one cannot believe.  People with motivation become apathetic.  Not only is the mind, as we think of it, o'erthrown, but the entire personality.  A good friend told me that the person for whom I provide care would become more gentle.  Not so.  I think it is not safe to predict how anyone with dementia will change; but change they will.  We no longer can relate to husband, wife, parent, friend -- that person is no longer really there.  The person who remains is one who deserves to be treated with dignity and respect, but let us not kid ourselves:  it is not the same person we once related to.  Therefore, it is important for us not to expect the same person.  What can we value in the "new" person for whom we provide care?

What to tolerate

"A community will only have a problem with the drug they tolerate." Edward Moses.

This was said over and over in the recent science-based brain training I attended, and I think it is true.  If a community tolerates drunkeness; drunkeness will occur.  If a community tolerates underage drinking; underage drinking will occur.  So, too, in some respects will ill behavior of the care receiver happen to the extent we tolerate it.  Of course, there are exceptions.  Violence and belligerence seem to be an innate part of dementia; but, I am convinced that some behavior is controllable -- at least in Lewy Bodies Dementia.  Take complaining, for which I have a very low tolerance.  I finally drew a firm line today with Dwane.  If he complains (which he does about any and asunder little things), then we will change this caregiving arrangement (our original agreement was based upon his cooperation and good attitude).  There has been a dramatic change in his attitude.  So, it reinforces my belief, some of the intolerable behaviors can be controlled.  What behavior of your care receiver do you think is avoidable?  I suggest that we do not tolerate violence (which includes belligerence, complaining, yelling) of any kind.

Avoid opiates

"Knowledge without action is the greatest self-con of all." Sharon Wegscheider-Cruse.

One of our roles as caregivers, it seems, is to educate others --- even those within the medical community.  It was only with a large degree of assertiveness that I was able to convince the anesthesiologist to not administer general anesthesia or any medication with opiate content.  It seems as if medical personnel in the general swim of things do not know much about dementia in general, and Lewy Bodies Dementia in particular.  I don't have research to prove it, only personal experience, but general anesthesia and pain medication containing opiates caused severe hallucinations, confusion and belligerence following his surgery four years ago.  The surgery this week was entirely different when I was able to convince the anesthesiologist to avoid those two things.  Even the other physicians do not know much about Lewy Bodies Dementia.  The surgeon said to me after the surgery, "His short term memory seems pretty good."  To which I said, "Yes, that is because it is other parts of his brain that are being ravaged; the parts that deal with comprehension, reasoning and judgment."  The hospitalist said upon discharge, "He recognized me."  To which I said, "Yes, that is because memory is not really the big component in Lewy Bodies Dementia."  Perhaps we caregivers, one by one, can educate even those among the medical community. 

Speaking kindly

"By swallowing evil words unsaid, no one has ever harmed his stomach." Winston Churchill.

Have you ever been around someone who seems to talk without censor?  It is amazing to see that, seemingly, what occurs in their thoughts automatically comes out their mouths.  Of course, we are all guilty sometimes of saying things that are hurtful to others -- without thinking or meaning to offend.  Communication is such an intricate process, and the problem in communicating with the care receiver is one of my biggest frustrations as caregiver.  An exercise we could try is to be silent and observe.  Does the situation really need our voice to be added? 

Today let us think:  Will what we want to say add to the harmony or will it disrupt it?  Let us stop and think before we speak, and let us speak only when our words will add to the well being of everyone.  That does not mean that sometimes we will not mean to speak up, but it does mean, I think, that we weigh the relevance of what we might want to say.  Is it a contribution?

Choosings our ideas

"I select ideas as carefully as I would select a precious gem.  I want only those ideas which are worthy of my highest spiritual development.  The ideas I have selected include health, prosperity and creative self-expression.  I formerly believed that situation, people and problems had power, but now I see rightly."  Ernest Holmes. 

What good counsel.  If one believes, and some do, that our ideas/thoughts/feelings are what create our experience, then it is prudent to select them wisely.  I have been too tired to think positively; a lot going on this week with Dwane's surgery, the in-home health care falling through, and many phone calls to arrange other help.  But, the reality is, we are doing okay this weekend -- with in-home help starting on Monday.  I even have the energy today to think of a good meal to prepare.  So, I will get myself back on track; I will carefully select those thoughts and ideas I have.  I will not allow myself to be carried off by thoughts (worries) that I don't subscribe to.  I will think thoughts of joy and well-being.  For us all.

Thank you, dear readers, for your supportive comments and loving thoughts.

Surgery went well

"Science teaches us that there is not an atom of our physical being that was in it even a few months ago.  I do not see any reason, theoretically at least, why a person could not heal himself of anything, given time  . . . . . " Ernest Holmes   (and, I might add, the right orientation and attitude.)

Thankfully the anesthesiologist was willing to listen to my concerns and avoid both general anesthesia and narcotic pain medications, so the aftermath from the surgery is very different from last time.  No severe hallucinations, belligerence and bizarre behavior.  With his foot structurally corrected, perhaps he will be able to stand with less pain, and he even hopes to walk.

I am taking a badly-needed overnight on my own while the surgery center takes care of him.  Perhaps that will give me the time and strength to pull together the resources we will need when he gets home.

Expectations

"Nothing creates more unhappiness than failed expectations  . . . . . Expectations are an attempt to control the future." Deepak Chopra.

Many years ago a wise therapist told me much the same thing.  She said that resentments were caused by having expectations.  It is probably true.  Think of some of your greatest disappointments.  Were they, perhaps, because you had expectations of something different?  Most of the time, it seems to me, our expectations are of how we think we can expect other people to behave; and then when they don't behave that way, we have resentments.  Far better, it seems, is to not place upon people and future events our own expectations.  Instead, let us be prepared to glean from the moment (each and every moment) what is there to glean.  This does not mean that we accept ill treatment from others.  There are, unfortunately, people who will mistreat us or be dishonest with us.  It is better to choose to not be around those people than to resent their behavior toward us. 

Not having expectations is a good technique for dementia caregivers too.  It is important, it seems to me, to release any expectations we have of how the care receiver will behave.  He or she is not the same person they used to be.  We are saving ourselves a lot of angst if we do not expect them to be.  

Supportive services

"If the only prayer you said in your whole life was, "Thank you," that would suffice." Meister Eckhart.

The supportive/home health services I had arranged for next week to assist with the post-op needs fell through today, so I have spent most of the day trying to patch some services together.  I am very much at the point where I need/want more help; in fact, I know I have waited too long.  A health practitioner today said I had fear and overwhelment in my eyes.  Good feedback for me to hear how overloaded I am.  It is stunning for me how hard it is to get services in place and how many roadblocks there are for what would seem like appropriate services.  For instance, it seemed reasonable to me that he go to a rehab hospital after surgery --- but they won't take him because he doesn't have acute medical needs.  My goodness.  I know that I am intelligent and assertive, and I am very frustrated!!  How do people with fewer resources navigate through the incredible maze of roadblocks put up by agencies and regulations?  Perhaps the good news in this is that I will find and secure just the right person/persons in our local area.  I hope so.

We endure

"In three words I can sum up everything I've learned about life:  it goes on."  Robert Frost.

I love Robert Frost's work.  Such wisdom in such simplicity.  Whether we are facing caregiving for someone with dementia or any terminal illness, or some other life challenge -- such as health problems, professional setbacks, difficulties in relationships, financial reversals or uncertainty (and who isn't with the worldwide financial concerns?!), emotional or spiritual confusions, or any other of the myriad challenges that we humans can face, life does go on.  Things that seem undoable, do get done.  Things that we think we cannot live through, we do live through.  Problems that seem unsolvable, either get resolved or we learn to live with them.  Life does go on.  Sometimes even what seems colossally important, in the long run is not that important.  People leave us through death or separation or relocation, and life goes on.  Because life goes on, perhaps it is important for us to determine what is really, I mean really, important to us.  Since nothing is permanent, perhaps we might want to think carefully about where we put our time and energy.  One thing is certain:  we are alive, and while we are alive, life will go on.  Let us put our attention into creating the best life possible. 

Compassion

If you want others to be happy, practice compassion.  If you want to be happy, practice compassion." The Dalai Lama.

Pretty simple recipe for life.  The person, I think, we caregivers may forget to practice compassion towards is ourselves.  What would it look like to practice self compassion?  Although different for each of us, it would probably contain:  kind thoughts about ourselves, being sure to have time for exercise/good nutrition/recreation/socialization/prayer, not allowing this role of caregiver to get in the way of our having a full and rewarding life ourselves, stimulating conversations or activities.  Remember:  we are dealing with a progressive and terminal illness.  The goal, in my opinion, should be for quality of life for ourselves and the care receiver during this dying process.  I aim at making every decision against the rule of thumb:  will this improve the quality of our lives?  I suggest this is a good guideline for us to have during this caregiving time.