Live and Let Live

1. 

   "Allow the world to live as it chooses, and allow yourself to live as you choose." Richard Bach
   
   

   As caregivers we have many opportunities to shape the world of our loved one.  As my loved one spends more and more time in a non-lucid state with increasing hallucinations, I have the opportunity to constantly correct him or to just listen.  Recently he pointed to his carpet and said, "Does that cat have an additional stripe?"  I just responded that I was not sure.  What good would it be to tell him that there is no cat?  He sometimes figures that out himself -- because he will reach for the object he sees and find it not there, and then I can talk with him about his visual hallucinations.  It is good for him to talk, and I can be the listener -- without judgment, without censuring.  Even his vast knowledge of history is being affected.  He said recently, "Clinton only has a couple years left in office."  I merely responded, "That's interesting."  It is hard nowadays to know what year or what era he might be in cognitively.  

Power of Our Thoughts

1. 

   You get what you pay for, , and you pay for what you think about.
   
   Literally, 
       The Universe
   
   Another reminder that our thoughts create our life.  I just read a quote this morning that our bodies also reflect the content of our thoughts, and I think this is true.  Not that it is magical, but the general content of our thoughts is reflected in our bodies and in the quality of our lives.  Scientists say we have about 60,000 thoughts a day, and almost all of them are the same as the thoughts we had yesterday.  Redundant and often negative.  It is worthwhile to watch the content of our thoughts and change the content to create a better world for ourselves and others.  How do we do that?  By focusing on thoughts of gratitude and well being -- for ourselves and others.  While driving, we can send loving thoughts to all others on the road.  Another practice which I have done for a long time, if I encounter an emergency vehicle on the road, I send prayers for those involved in that emergency.  Our thoughts are powerful.  Let's create thoughts that empower our lives.
   

Let's Talk About Money

1. 

   "A thought of love is always healing." Science of Mind, p 233
   
   

   I continue to be surprised that some people have little idea of the cost of caregiving.  If a person keeps the loved one at home and pays for caregivers to come in, the cost in the intermountain west of USA is a minimum of $60 an hour -- and I imagine it is much more in other areas.  If you seek assisted living, the cost is between $3000-$6000 a month.  Nursing homes in our area are now about $8000 a month.   Longterm care insurance -- if bought before obtaining a diagnosis of dementia or other disability -- will pay for part of the cost, but certainly not all.  So, then, from where will the money come to pay for the care?  Some caregivers can keep the loved one at home and provide the care, but with Lewy Bodies Dementia and some other types of dementia, there are so many behavior difficulties that keeping the loved one at home may not be feasible.  A financial adviser told us one can probably pay out-of-pocket if their assets are $3,000,000 or more.  If one has assets of $130,000 or less (plus one home and one car), you can perhaps qualify for Medicaid to pay.  There are a lot of variables, and I recommend that you contact a very good elder-care attorney to help with these decisions.   

Ability to Think

1. 

   "Those who know how to think need no teachers." Robert Frost
   
   

   I love Robert Frost, but this line frankly puzzles me.  Of course, our ability to think is helpful in life; but many, many of the things I have learned have been modeled to me by others.  Just recently in having dinner with friends, one of the people asked for us to be moved because the light above the table was bothersome.  Good modeling for me -- as I am likely to "make do".  The person was courteous in asking, and we ended up with a much better table.  This may seem like a very simple example, but simple can be applied to more complex.  I share with others the tasks we confront in caregiving with the intention of helping others.  Just this week someone told me that they were thinking differently about the next few years because I have shared how expensive longterm care is.  That is what we can do for one another.  Share, learn, and - in so doing - lessen our burdens and increase our joy.

Value of Truth

1. 

   "Truth alone will endure, all the rest will be swept away before the tide of time." Mahatma Gandhi
   
   

   In reading a recent biography of Gandhi in preparation for a lesson I was giving in church, I read that he was able to bring down the British Empire because he aligned his will with a Universal Truth.  That universal truth was that all humans have God-given sovereignty, the right to determine one's own life, and are equal before God.  I am so intrigued by the idea of aligning one's actions with Universal Truth.  Another book I have read, Power versus Force, by Dr. David Hawkins says much the same, and it says the Universal Truths include Joy, Freedom, Appreciation, Compassion, Equality, Respect.  What if we align our actions with a Universal Truth in our role as caregivers?  That would mean, according to this theory, that we have Universal benevolent power behind us -- making the path easier.  What if we would choose to have all of our decisions and actions be aligned with Compassion and Respect?  I think it is worth implementing.  

Benefits of Gratitude

1. 

   "In everything give thanks." Kahlil Gibran
   

   
   

   Having an "attitude of gratitude" is one of the tenets of the Twelve Step Programs, and it is very wise advise.  In the Michael Singer interview he said that we have two choices when life presents us with a challenge:  we can complain or we can change ourselves.  We all know plenty of people who spend considerable time complaining about any number of things, and - as humans - we all do that at times, but it is so important not to make a habit of it.  Always.  Yes, always, there will be a bright side to any circumstance.  It is our task to find it.  Take caregiving, what are some of the benefits?  It has helped me reevaluate my priorities and how I spend my time.  It has helped me (and others with whom I have shared our experience) prepare better for my own elder years.  It has exposed me to numbers of people with dementia, and it has increased my compassion.  How have you benefited from caregiving?

Patience

1. 

   "Have patience with all things, but first of all, with yourself." William James
   
   

   Good advice.  We all know that impatience with others or with situations, always also means impatience with ourselves.  We are our own greatest task masters.  We do not need to so manage ourselves.  Life will present plenty of opportunities to rub off our rough spots; we do not need to be so vigilant in doing so.  It feels of late that I have too many responsibilities.  I have returned to work part-time to offset the tremendous expense of Dwane's care.  I visit him regularly and take him his favorite treats to eat.  I also have other professional and personal responsibilities.  I am sure you do too.  So, first of all, let's have patience with ourselves.  It is not humanly possible to provide caregiving and do all the other things we want to do in life.  But, this time in our lives shall pass.  In the meantime, we can make the journey easier by being patient and gentle with ourselves.  

Sailing One's Life

1. 

   "I am not afraid of storms, for I am learning how to sail my ship." Louisa May Alcott
   
   

   Easy to say -- harder to live.  I watched Oprah interviewing Michael Singer recently, and he said much the same.  He said that his indictment by the federal government for alleged fraudulent practices was something that did not upset him, because he knew that the experience would completely remove the rest of his personality -- who he thought he was versus who he really is.  This is an intriguing idea.  Caregiving for someone with dementia or any disabling condition is a "life storm".  Perhaps if we view caregiving as an opportunity to advance on our spiritual path (which I think is the same as saying advance toward our fullest human potential), then the tasks and responsibilities would be easier.  I think I am going to view it this way.  How about you?

Avoiding Injuries

1. 

   "This study suggests that there's a lot of room for improvement in reducing medical injuries.  We need to zero in on reducing the damage that the health care systems can inflict on patients."
   Keith Lind - referring to study in Injury Prevention
   
   This study goes on to say that most (62% of) injuries do not happen at home, but instead happen in doctor's offices, clinics, and nursing homes.  We may have to take into consideration that people in nursing homes obviously have other medical issues going on, but it is still notable that so many injuries happen in those settings.  I have been surprised that it is my advocating that got a bed rail on my loved one's bed, and I am the one who keeps pushing his bed against the wall (to prevent him falling between the bed and the wall).  It has not been the nursing home staff that has done these preventative measures.  In our advocating, it is my experience that we can help our loved one avoid injury by putting into place preventative measures -- because it does not seem that nursing home staff are oriented to do so.  

Dirtiest Fruit

1. 

   "Apples, strawberries and grapes have the most pesticides.  Avocados, sweet corn and pineapples topped the clean list." U. S. Dept of Agriculture
   
   

   We may not wish to spend the money on organic everything, but it may be worthwhile to avoid apples, strawberries and grapes that are not organic.  Recent research indicates that pesticides are a contributing factor for causing autism, and I wonder if pesticides and other toxins might not be a contributing factor for dementia.  It is worth considering and avoiding our exposure to toxins. 

Handling the Heat of Summer

1. 

   "Help yourself and others avoid experiencing heat disorders by following these suggestions:" noaa.gov
   
   

   We started out with a very cool and wet spring/early summer, but the heat is here now.  NOAA suggests these tips for dealing with the heat.  It is helpful for us and for our care receiver who may no longer be able to discern these choices.

   • Avoid the heat by staying indoors from 10:00 a.m. to 2:00 p.m., which is the hottest part of day.
   • Dress for heat by wearing loose-fitting, lightweight clothing that covers most of the skin.
   • Drink FOR the heat lots of water and natural juices.
   • Do NOT drink alcoholic beverages or beverages with caffeine.
   • Eat for the heat by eating small meals often.
   • Do NOT leave anyone in a parked car even for a few minutes.
   • Avoid using the oven.
   • Keep lights turned off or down low. 
   • Protect windows by installing awnings or drapes.  Outdoor awnings can lower the heat entering the house by 80%.  

Being Satisfied

"The perfect creative stance is satisfaction where I am and eagerness for more." Abraham

Abraham has some good advice:  monitor your emotions and stay in feelings of appreciation.  The above quote is another good example.  So many of us humans look for the next moment or event to be more fulfilling than what we are currently doing.  It reminds me of cows which I have seen stretching their necks through fences to get to grass on the other side of the fence, when the grass they are stretching for looks exactly the same as the grass at their feet, on their own side of the fence.  I have a friend who says she knows she always has enough, and I have noticed that she is always ready for something even better.  A good way to live.  Satisfied with what is, and eager for even better.

Planning for Continuing Care

""Where will I live when I start to need help with the daily business of living?  I don't want to wait for my children to open "the conversation".  I want to start that conversation myself.  Their input will influence me, but I want the decision to be mine." Jane Bryant Quinn

Jane Bryant Quinn is a personal finance expert, and she recommends checking into CCRC's (Continuing Care Retirement Communities).  I wish we had.  Because we did not, that means I am left to make all those decisions for my loved one, which has been the most difficult thing in my life.  Such a responsibility to make decisions for someone else's well being!!  And expensive.  Even with long-term care insurance (and I am so grateful for that), the cost out-of-pocket for us now is about $4000 a month, and that does not include medications which are several thousand dollars a year, even with prescription insurance.  People seem to be fairly unaware of the incredible expense of long-term care, but - having experienced  it -, I can now make better decisions for myself; and CCRC's are worth looking into.  

Spiritual Support

1. 

   "whoever you are, whatever you believe" Rev. Eric J. Hall
   
   

   The healthiest people I know are the ones who seek support from other skilled individuals, perhaps especially in the form of therapy.  I read some statistics recently that people who choose to enter therapy are happier than those who do not.  It can be scary to make that phone call and admit you need help, but it is well worth it.  We who are caregivers cannot hope to do this task without support - emotional and spiritual.  Now there is a free service for any one of us, created by the above minister.  It is HealthCare Chaplaincy Network, where chaplains of all denominations are on hand 24/7 to provide support.  You can chat with a chaplain or submit a prayer request.  To connect with a chaplain log in at www.chaplainsonhand.org or call 844-242-7524 (toll free).  

Staying the Course

1. 

   "He who mounts a wild elephant, goes where the wild elephant goes." Randolph Bournes
   
   Sometimes moods can be like wild elephants.  A mood, especially an upset or irritation, can get a hold on us and off we go -- seemingly unable to return to homeostasis.  It is very dangerous for me to allow myself to feel irritation, because irritation can take me into other negative feelings.  I know I am not alone in this, as it is a human condition.  So, to stay the course of peace and harmony is the answer for me.  I chose the title of this blog with care because graciously is how I want to be in all settings, to include caregiving.  To be gracious is to bring grace into every situation and to live there oneself.  

Recognizing End Stages of Dementia

1. 

   "Helping someone who has dementia through the last years of life is a difficult journey. As the disease progresses, you'll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life." Mayo Clinic
   
   

   Hospice care is typically reserved for people who have less than six months to live. Because this time frame can be difficult to predict in end-stage dementia, hospice care is generally considered appropriate when a person who has end-stage dementia which includes:
   

   • Has lost the ability to communicate
   • Can no longer walk
   • Can no longer hold his or her head up
   • Has at least one dementia-related medical complication, such as aspiration pneumonia, infection or weight loss  (Mayo Clinic)

Financial Information for Family

1. 

   "Organize documents that will give your kids a snapshot of your current situation, such as your will or trust, living will, powers of attorney (financial and medical) and insurance policies." aarp.org
   
   

   With 1/3 of caregivers dying before the care receiver, we need to also keep in mind organizing our financial records so that our children can take over if necessary by our death.  AARP recommends making a binder for each child with the following information:  will or trust, living wills (both financial and medical), insurance policies, powers of attorney, bank account information, burial and funeral wishes, list of names of family members and advisers' contact information.  While compiling these binders, I recommend that we make one for ourselves too, so that we have all relevant information at our fingertips.  

Preventing Fraud

1. 

   "Planning a funeral is a prime time to get buried in fraud." aarp.org
   
   

   As much as we may not like it, we - as caregivers - will be planning a funeral.  Perhaps it is best to not leave it to the very end -- with this information that fraud can take place, especially when one is under pressure and stress.  Things to remember:  upon first visit funeral homes are required by law to provide you with 3 lists of costs:  one for the all materials and service, one for the casket, and one for anything extra.  Funeral homes cannot insist upon you buying services that are not required by law, such as embalming, or insist you buy the caskets from them.  You cannot be charged extra for buying the casket somewhere else -- a common way people can save money.  In Federal investigations, 1 in 4 funeral homes were in violation of these rules.  Preplanning the funeral is important, but perhaps not prepaying, as these have also been found to sometimes be schemes.  

The Interior Journey

1. 

   "He who looks outside dreams; who looks inside awakes." Carl Jung
   
   

   Being self-reflective is a good way to become a mature human.  Psychologists, like Jung, suggest that the behaviors we do not like in others is actually a projection of something we do not like within ourselves.  The answer then is to begin to like all parts of oneself.  I watched Alice in Wonderland recently.  It is said that this is a story in which the author is telling about the parts of himself he met while on an interior journey.  We can all expect to have aspects of ourselves that are the hero/heroine, villain, lover, clown -- to name a few.  An interesting practice is to consider the next time someone does something you do not like --- how is that like me?

Weight Control Tips

1. 

   "These tips can help you lose that last 5 pounds." Health Report/AARP
   
   

   Eliminate toxins by not storing left overs in plastic containers or eating unwashed produce.  Keeping receipts lying around emits toxins, and these toxins slow metabolism.  Eliminate night-time light, so that you sleep better.  Meditation and yoga are both ways to support optimal weight.  Exercise at least 30 minutes every day for optimal body movement.  And, of course, manage what you eat.  

Health Boosters

1. 

   "These 60-second tips can improve your health." AARP
   
   

   Remove your shoes at the front door to prevent tracking in pollen and dirt.  Be sure to put sunscreen on the tops of your feet and the top of your head -- or wear a hat.  A 10-second hug lowers blood pressure.  Consuming watermelon can relieve muscle soreness.  Holding a slice of cucumber to the roof of your mouth for 90 seconds can eliminate bad breath.  Brush your tongue while brushing your teeth to reduce bad breath and protect against gum disease, colds and cavities.   

Gift of Giving

1. 

   "It is when you give of yourself that you are truly giving." Kahlil Gibran
   
   Other than parenting, there may be no other task in which one gives so fully of oneself than in caregiving.  That is self evident, but, what does that giving look like?  I have seen caregivers slap the hands of their care receivers or argue with them.  We are all human and have limited patience, but if you frequently lose patience with your loved one, then it is time to look for more respite for yourself.  Even staff in facilities can be seen arguing with residents.  Pointless and perhaps even harmful.  What arrogance to think that we know the only reality.  With the visual hallucinations that accompany Lewy Bodies Dementia, their hallucinations are as real to them as you and I are sitting in front of them.  It is pointless, and disrespectful, to argue with what they believe they have experienced or are experiencing.  The better thing is to redirect, divert their attention to something of common interest, engage them in some activity.    

Disconcerting

1. 

   "Hallucinations, especially visual, are one of the characteristics of Lewy Bodies Dementia." LBDA
   
   

   It is disconcerting to visit with the loved one at this phase of Lewy Bodies Dementia.  Today in conversation he went from remembering that he owned a trolling motor for his boat to asking how his father (deceased by a number of years) liked his new car.  He often talks about his two previous work situations and relates detailed - and often tormenting -- details about what happened there in the past few hours.  He can discuss Elizabeth Cady Stanton, but then does talk about driving to work that day.  Disconcerting.  The speech/language therapist he was with concurred with me that the important thing is for him to be talking with someone one-to-one, but it is hard for me to see that his hallucinations are such torment for him.  I had another relative with a different type of dementia whose hallucinations contained angels talking to him.  I wish my loved one's hallucinations were so peaceful.

Being Willing to See

1. 
   

   

   "The only thing worse than being blind is having sight but no vision." Helen Keller
   
   

   Clever thing for someone blind to say.  Most of us have sight, but do we have vision?  Can we see what is in the best interest of ourselves and others?  We may need to look at things in a new way.  What is best for our loved one?  That depends on what phase the loved one is in, and I think it takes reevaluating all the time.  What is best for us?  That too can change in form, but it must include our own health and well being.  We cannot lose sight of taking care of ourselves -- at least 1/3 of caregivers do lose sight of their own health. That serves no one.  What can you do today to support your health?

Uses of Baking Soda

1. 

   "Baking soda can be used to clean produce, relieve itching from mosquito bites, and exfoliate skin." Rob Danoff, DO
   
   

   If you strive to avoid harsh chemicals, it is good to remember the uses of baking soda.  It can also be used as a safe cleaner, to deodorize things, and to brush our teeth.  So, even if you are not going to make soda bread, baking soda is a fabulous and versatile product -- it is also inexpensive.  

13 Power Foods

1. 

   "Sodium has always been the blood pressure bogeyman, but it's just as important to choose foods naturally low in sodium and high in at least two of the three power minerals:  calcium, magnesium and potassium".  Prevention Magazine, July 2014
   
   

   The above information comes from the book, Lower Your Blood Pressure Naturally, which says that there are 13 foods that are important for us to eat to lower our blood pressure, and cut our risk for strokes and heart attacks in half.  Those foods are:  white beans, quinoa, pork tenderloin, fat-free plain yogurt, red bell pepper, kale, broccoli, sweet potato, banana, kiwifruit, peach or nectarine, avocado.  Yum!  A good excuse to eat the foods that are delicious and nutritious.  

Love

1. 

   "If you could only love enough, you could be the most powerful person in the world." Emmet Fox
   
   

   That is a pretty powerful statement, and one that is echoed by others such as Teilhard de Chardin who said that when we harness the power of love, it will be like humanity discovering fire once again.  As caregivers we are called to act out of great love.  Love in the form of taking care of the needs of the loved one, as well as sufficient love to let the person go when that is the right time.  Some people who work with the dying say that people may linger here longer than they want because we have not set them free to go.  To set them free means to tell them their lives have served purpose and that we, their loved one, will be okay, that is is okay for them to go.  When it is time to say those things, it takes courage and love.  

Reality

1. 

   "Reality is an illusion, albeit a very persistent one." Albert Einstein
   
   

   This seems like an interesting thing for one of the greatest scientific minds of all time to say, but it brings me comfort nowadays as I am with my loved one who spends less and less time in what we would consider reality.  Yesterday he was determined that we were driving to the other side of the state -- the site of his boyhood home.  Although in a wheelchair, he felt that he had to get out of bed so we could go.  I try just to observe his altered reality, because - after all - it is his reality.  Whose to say that what I think is reality is preferential to his view of reality?  His decline in just the last three weeks is shocking.  I look for comfort in the kind care he is receiving, in the way that the facility responds to my concerns (the bed rail was up as promised and they are reevaluating half dosage on the anti-anxiety medication if it is needed again for his agitation).  I also look for comfort in my circle of family and friends and in other serendipitous events:  like the great blue heron flying by my window this morning during my prayer time.  

Unending Advocacy

1. 

   "advocate:  Definition:  somebody who acts or intercedes on behalf of another" Bing dictionary
   
   

   I thought that the need for advocacy on behalf of my loved one would end when it became necessary for him to go into a nursing home, but, no, it does not.  He fell out of bed and has abrasions and bruises all over.  I had to submit a request for a bed railing -- something I thought they might have thought of.  Then, when I saw him yesterday he was so sedated he was unable to respond when I said his name.  It turns out they have been giving him atavan because they say he is agitated in the afternoon --- they called it 'sundowners'.  He has never had sundowners, and if he is agitated, I find that talking to him brings down his anxiety.  So, again, I have had to request he not be given sedatives.  It is not that I know so much, but I certainly do know him and his behaviors.  If he is agitated, he may be hallucinating and feel compelled to be taking some action within that hallucination.  Again, calm reasoning can bring him back.  We, as caregivers, need to be ready to advocate for the best treatment for our loved ones.  

Becoming Who We Were Meant To Be

1. 

   "Before we can become what we are meant to be, we must accept what we are not." Mark Nepo
   
   

   Joan Borysenko says the same thing when she says that heaven on earth is accomplished when we develop our potential.  It seems that may be our life journey:  to develop to our full potential.  In developing our potential, it is important to acknowledge what we are not.  I once heard Oprah say, "Do not try to become Oprah.  I already have that one taken."  Amusing, but so true.  We can admire other people and learn from them, but it does not serve us to try to be them.  There is only one you and only one me and only one Oprah.  That is our task:  to become the best person that only you and I can become.  As Nepo says we need to let go of the grand fantasies that take us out of our own true nature.  I would say further -- that once we let go of those fantasies, we then develop to the fullest extent who we are.  

Buttered Coffee?!

1. 

   "Blending 1 cup hot coffee with 1 tablespoon unsalted grass-fed butter and 1 tablespoon coconut oil can improve focus, lower cravings, and improve metabolism." Jeffrey Gladd, integrative doctor
   
   

   Hmmmm.  Sounds interesting.  I was raised on a diary farm, and I did not ever get on board the trend to eliminate fat from our diet -- which is now gratifying as more and more research supports the benefits of healthy fats.  I love real butter, and I am going to try this.  The doctor quoted above says he lost 13 pounds of body fat and improved his thinking by drinking the above drink instead of eating breakfast.  He also says that rather than saturated fats being a health culprit, sugar and refined carbohydrates are.  It does require using a blender to blend the ingredients for 10 seconds, but it may be worth a try.