Sep 30, 2011

Revelation

"Revelation:  An act of revealing, especially a dramatic disclosure of something not previously known or realized." American Heritage Dictionary

It has occurred to me this week that a large part of my stress has been setting up support systems and intended-respite for myself and then trying to get Dwane to cooperate with what I have set up.  Respected sources recommend that the caregiver does not discuss these things, just sets them up, and leaves.  And I am sure that works with some types of dementia and some people who are caregivers; but it was not working for me.  A large part of my stress was from being secretive and then worrying if I could get Dwane to go along with it.  So, I tried a different approach yesterday.  I told Dwane that I am going to see my grandson, and that ethically I needed to ensure I was leaving him in a safe environment.  Then I gave him two choices:  he could have someone come in that we paid or he could go for a few days to a room within an assisted living setting.  He was, as I expected, opposed and insisted he could stay alone - even though he does not drive, cook or handle emergencies.  But I was very firm and told him that if he wants to remain at home, it can only be with my getting regular breaks monthly.  He has two days to make his choice.  Please hold us in your good thoughts, and I will let you know how this new approach works.

Sep 29, 2011

Cultivating spirituality

"You can be spiritual by reflecting on your own life and its purpose, and connecting it to something larger than yourself, whether through religious worship, art, music or the natural world." Mayo Clinic Health Newsletter.

Finding meaning in life seems to be a timeless goal for humanity.  Many find that meaning through religion, but it can also be found through determining a purpose for your life and following that purpose.  Although I was raised in a particular religion, for which I am grateful -- for its foundation, I would now consider myself more spiritual than religious.  For me, determining God's plan for my life and living up to that plan are paramount.  Finding meaning in my life is part of my orientation.  Recently I said to a friend that I wanted to learn what was here for me to learn from encountering caregiving for dementia in my life.  She said that she did not think we were here to learn something.  It does not matter which of us is right, or if either of us is.  Part of my orientation is to learn from my experiences and become a better person because of the learning.  It helps me have meaning in my life. 

Sep 28, 2011

Practicing optimism

"Look for the positive, count your blessings, forgive, savor good times and simple pleasures, and practice kindness."  Mayo Clinic Health Letter

Another way to develop resiliency so that we are better able to handle adversity is by being optimistic.  It is really true.  It seems in my observation that when people dwell on negative, more negative occurs; and conversely; when people dwell on the positive, more positive occurs.  This does not mean we can stop bad things from happening, but even such a simple example as how you wake up in the morning.  Have you ever noticed that if you wake up cheerful, the day often goes better?  While if you wake up irritable, things seem to go downhill from there.                                                                     

What are some things we can savor?  Right now for me:  the abundance of fall produce, the exquisite colors of the deciduous trees, the lovely days and cool nights.  And, in practicing kindness, let us put ourselves at the top of the list.  Let us practice being kind to ourselves, and then kindness to others more naturally happens.                                                                                                       

Sep 27, 2011

Looking forward

"Having something to look forward to can help motivate you to stay engaged with life, refocus your thoughts away from your troubles and give you hope."  Mayo Clinic Health Letter

This is an extremely important thing for me in developing resiliency.  If I look too much at Dwane's decline and the tediousness of our daily lives, I lose hope.  If I have nothing to look forward to, I lose hope and become mired in the hopelessness of living with a terminal, progressive disease.  One of the hardest things about living with dementia is that the person is no longer the person with whom we originally had a relationship.  Someone said to me recently that Dwane would want me to take care of my own life and health.  Hmmmmm.   Would he?   It has been so long since he has shown an interest in me, my welfare or my life that I cannot remember accurately if it ever happened.  So, I cannot count on the person with dementia to create something for me to look forward to.  I must create things in my own life to look forward to.  Right now that something is going to see my grandson race and to be with my children.  Still weeks away, but something I can anticipate with joy.

Sep 26, 2011

Cultivating healthy social connections

"Make relationships a priority, whether it's maintaining ties to family or friends, or by participating in a social or religious group." Mayo Clinic Health Letter

Hard to do when one is providing 24/7 caregiving, and I find that I tend to isolate when feeling stressed -- so that adds to the problem.  For me it is very important to note "healthy" social connections.  We all know people who keep very busy, but may not have a priority on having healthy relationships.  I find that with the stress of caregiving, I cannot be around people who are negative and complain or gossip.  I just cannot do it.  My equanimity is fragile enough without adding people who focus on a lot of drama in their lives.  Some people find comfort in support groups for caregivers.  I have only gone once, and the entire program was on little games I could contrive to play with the person with dementia.  I don't have time or the interest in establishing little games for him to play!  I am too busy paying bills, making and transporting to medical appointments, ordering and dispensing medications, etc., etc.  But, I will entertain the idea that the meeting I attended might have been a fluke, and that there are meetings out there to support the caregiver; not give her/him more to do.  Preparing this blog makes me realize that I want to make healthy relationships more of a priority in my life. 

Sep 25, 2011

Managing stress

"Managing your response to day-to-day stressors may include learning relaxation techniqus such as deep breathing or meditation, or other mind and body practices such as yoga and tai chi." Mayo Clinic Health Letter.

I would also add prayer, deep breathing, a positive attitude.  Stress is a part of our daily lives as dementia caregivers; some days more so than others.  It is not Dwane's difficulty with comprehension, reasoning, and judgment that cause me the most angst.  It is his belligerence, his extreme defensiveness, his inability to see his part in what he causes to go wrong (i.e., it is not the tv remote, or the telephone, or the clock -- it is his inability to use these devices.)  Part of his dementia is complete inability to see his lack of functioning as the cause of not being able to do something.  That is so frustrating for me, as it seems so reasonable just to try another way rather than blame the device, but that is not within his repertoire any more.  So, how do I handle it?  I make devices he might use as simple as possible, and I try not to listen to his complaining -- which is not only irrational; it is frustrating for me. 

Sep 24, 2011

Physical activity and diet

"Challenging your body with daily exercise and eating a healthy, plant-based diet help bolster your resiliency by improving your physical strength, stamina, mood and mental health -- and by reducing your risk of many diseases," Mayo Clinic Health Letter

I can always know when I am overly stressed or overly busy because exercise falls out of my daily schedule.  I have always been an avid exerciser, although it has taken different forms over the years:  running, aerobics, swimming laps, biking, hiking.  Right now I walk/run 2-3 miles a day, but I missed 2 days this week -- so I know I am overly busy -- which leads me to being overly stressed.  I exercise because I love it, and for the health benefit, but perhaps even more so for the peace of mind it provides me.  I sleep better, I feel better, my body feels better; when I have purposeful movement in my day.  Yesterday I met two other women walking on the trail I use, and one of them commented how blessed I was to have this trail so close to my home to use it every day.  I agree, and I intend to use it until snow covers it over. 

Sep 23, 2011

Resiliency

"The ability to bounce back from adversity is greatly aided by being fit and healthy." Health Letter, Mayo Clinic.

Being a caregiver for someone with dementia certainly qualifies as an adversity, and it is critical that we who are caregivers take good care of ourselves.  The above quoted newsletter suggests several ways to enhance our resiliency:  Physical activity and a healthy diet, managing stress, cultivating healthy social connections, having something to look forward to, practicing optimism, and cultivating spirituality.  We will deal with these subjects more in depth tomorrow. 

Sep 22, 2011

Externalizing ideas

"We say an artist "creates" a picture; he really externalizes an idea." Frances Lord.

What a lovely idea.  It brings being an artist a reachable concept for us all.  An artist is really anyone who is involved in a creative act.  Being a caregiver for someone with dementia can be a creative act.  Other creative acts could be:  what one fixes for dinner, the words one says to another, the way one decorates the home.  We don't have to limit our idea of artist as only those people who draw, paint, sing, write.  So, once again, we come back to the importance of our thoughts.  Are the thoughts you are entertaining the ones you would like to see externalized into your life?  If not, it is as simple as changing what one thinks. 

Sep 21, 2011

Insulin therapy?

"A recent study showed that an insulin-based nasal spray was effective against the symptoms of Alzheimer's disease." ABC News.


ABC News reports that insulin nose spray given to 1000 people improved symptoms of Alzheimer's Disease.  Amazing news.  There is not enough evidence for us to ask that insulin therapy be given to those people for whom we provide care, but this is exciting and worth watching.  There has long been a link between having diabetes and developing dementia, but this new information suggests that insulin may benefit the brain of someone with dementia, even if they do not have diabetes.

Sep 20, 2011

Truth

"The power of truth; longterm more powerful than guns." The Dalai Lama

Last night we watched a documentary, 10 Questions for the Dalai Lama.  Fascinating.  There was much I did not know about the process of choosing the Lama, and the conditions surrounding the Dalai Lama's long exile.  His practice of nonviolence is similar to Gandhi's, but, as he said, Gandhi had freedom of speech; whereas, the Tibetan people have not. 

In my professional career I have always felt that truth would hold the day, and rarely have I been disappointed (and even when I was disappointed, I think a higher good was probably served).  The Dalai Lama also said his way was to practice the middle way; the way of mutual benefit.  How can we make the world a better place by practicing the art of mutual benefit?  It is worth seeing. 

Sep 19, 2011

Forgiveness

The old law of "an eye for an eye" leaves everybody blind.
--Martin Luther King, Jr.
Isn't the above quote the truth?!  I was reminded of it because I just drove Dwane to see his sister, with whom I have had a strained relationship.  A long trip, over 6 hour drive each way for me, but it was something I had told Dwane I would do for him.  It was pleasant to see him enjoy reminiscing, and with whom can we better reminisce than our siblings?  A dear friend asked me if there would be any fun in the trip for me.  Lovely of her to think of me; and, no, this trip was not about fun for me.  It was about Dwane and enabling him to fulfill his desires:  to see his only sibling, an aunt, and his childhood home.

I have my fun trip planned for later when I leave Dwane in appropriate care and go to see my grandson run in a race.  I can hardly wait! 

Sep 18, 2011

Living deliberately

“I went to the woods to live deliberately, to front only the essential facts of life and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived” Henry David Thoreau

People wonder at our living out in the woods, at high altitudes with its short seasons (except perhaps winter!) and high amounts of snow; but we both love it.  And, for me, it has provided the opportunity to live deliberately.  So, too, has being the caregiver for someone with dementia provided the setting for me to live deliberately.  No longer am I much distracted by the exterior world and all of its drama.  I am able to live more in the current moment.  That is not to say there is not drama within the dementia caregiving, but, I think, a lot of our human drama is self created.  Some people even seem to thrive on drama.  Not me.  I love serenity, harmony, beauty and well being.  What qualities inspire you?

Sep 17, 2011

Peace and joy

"Instead of dwelling on negative thoughts, cause your mind to dwell on peace and joy," Ernest Holmes.

I love the use of the word 'cause' in the above quote.  It indicates rightfully that we have power; the power to change our thoughts.  We all know people who are 'lost in their thoughts' or who say they cannot stop the incessant mind chatter, but we can stop it.  It is part of our human journey to quiet what Dr. Joan Borysenko calls the 'monkey mind' and its endless chatter.  How can we quiet it?   Through mindful walks in nature, through meditation and prayer, through replacing thoughts of negativity with thoughts of peace and joy.  It can be done, and our lives are the better for it. 

Sep 16, 2011

Yes or no?

"The universe is one mighty magnet, having its positive and negative poles," Helen Wilmans.

The law of attraction is something well touted in even mainstream channels, but less well covered is saying 'no' to things.  Have you considered that whenever you say 'yes' to something, you are saying 'no' to something else.  Both are powerful effects, and we can think of them as a magnet; having a positive and a negative pole.  I remember as a child playing with Scottie dog magnets; I was fascinated more by how I could have one Scottie dog chase the other (by using the negative poles) than by seeing them snap together with their positive poles.  Perhaps there is a life lesson here.  What are we repelling by either negative thoughts or by having said 'no' to something?  I think we want to make sure that we are attracting what we want and repelling what we carefully choose not to experience.  And, we might consider that what we say 'no' to is exactly what someone else wants and will say 'yes' to.  So, today what do you want to attract into your life; knowing that by so doing you are also repelling something else? 

Sep 15, 2011

New experiences

"We never step in the same river twice," Proverb.

I love the wisdom found in proverbs.  Some people carefully craft their lives to avoid new and unusual experiences.  Perhaps that is what schedules are for.  But, I think, we may want to be careful to not become complacent about our life and our life experiences.  Enthusiasm about life can serve us well, and a supporter of enthusiasm is to view each life experience anew.  Even if we are doing the same task as we did yesterday, such as making the bed, we can know for certainty that this is not exactly the same as yesterday.  Perhaps there is a breeze today, perhaps we feel an ache in our bodies that was not there yesterday, perhaps we are thinking thoughts of hope that are new to us.  Let us approach each moment of our day knowing that it is an opportunity for a new experience for us. 

Sep 14, 2011

Equanimity

 "There are always those who are clear-minded in environments of confusion." Abraham.

How true.  Have you ever been in a crisis with others and noticed how differently people react?  Crisis response training I have taken states that we can never predict how we will respond in a crisis, but perhaps we can  have a good idea from previous experiences. What we are dealing with everyday, as dementia caregivers, is an environment of confusion.  Confusing communication, mishaps, more and more dependency.  Let us strive to take enough time to recharge ourselves so that we are clear minded.  Equanimity is a worthy goal.   

Sep 13, 2011

Our life as example

"You are the only Bible some people will ever read," Dr. Jesse Jennings.

How very true, and we could change the word Bible to Koran or any other holy book.  Our creed is fake if our lives do not reflect our beliefs.  I love the line in the Ghandi movie, "I am Muslim, I am Chistian, I am Hindu, I am Jew," in response when asked what religion he was.  Certainly his life was a testimony to his beliefs, and those beliefs did encompass humanity; not just his own religion.  What are your most carefully chosen beliefs?  Does your life reflect those beliefs?  It seems the world would be a place of greater peace and love if our lives were nondogmatic, honored freedom, knew that what goes around comes around, and that love can be the guiding standard for us all. 

Sep 12, 2011

Changes and decline

"Prune and cut back on excess, and growth will flourish." Vivan Elisabeth Glyck.

Although the above author is giving guidance for gardening, the same rule of thumb applies to our lives.  Yesterday my daughter and son-in-law came and mowed the lawn and helped me clean out the basement -- a project I have avoided this summer and last.  It was daunting to do it by myself, but an easy 3 hours with her help.  I am so grateful.  All clutter and unused items are gone, and I can now reach my financial records stored on the shelves.  It was interesting to see how Dwane would respond.  He dislikes getting rid of anything and usually hovers, but he acquiesced all to us.  A change. 
An ambivalence not seen before.  He seems to be disengaging from life, except for his own aches and pains, more and more.   It did make the cleaning and sorting easier, but it also served as an announcement that he has really changed.  Now he is having pains in his abdomen.  I guess we will make a doctor appointment.

I am so grateful for my clean, uncluttered garage and house.  Let the cleaning make way for new growth. 

Sep 11, 2011

Peace

"Peace must exist at the center of everything or the universe itself would be a chaos.  I am one with this deep, abiding peace.  I know that all is well."  Dr. Ernest Holmes.

For years when I am feeling stressed or afraid, I have used the mantra, "All is well."  Because, usually, in that moment, all is actually well.  I think peace is one of the most important qualities we can bring to our own lives, the lives of others and the world at large.  The only way we can bring peace, is to enjoy peace ourselves.  And, how do we do that in the midst of providing care within the erratic decline in the person with dementia?  One way I do is by hiring help.  The agency homemaker who comes now cleans my house for me, and that frees me to do the things that I never had time to do -- like get rid of the clutter.  The handyman who comes has fixed most of the things that were needing repair and is helping us get ready for the winter which is just ahead.  A great relief.  We must have support and help as dementia caregivers.  I like to think of it as a team of supporters, which include:  legal advice, financial advice, help cleaning, spiritual direction, handyman repair, health practitioners, and people who help me/us have fun. 

Who is on your team of supporters?  Do you have one for everything you need?

Sep 10, 2011

Congealed thoughts

"Whatever is in front of us is congealed thought, no more or less." Dr. Jesse Jennings.

Hmmmm.  Sobering thought.  What if it might be true that the content and quality of our lives is the result of our thoughts?  It is both sobering and liberating; because if our thoughts created this life and we don't like it, it would seem all we need to do is change the content of our thoughts to change our lives.  It is worth an experiment.  What is there to lose?  Let us today practice noticing what is good around us and thinking more thoughts in alignment with how we want our lives to look.  Being dementia caregivers might just give us the time away from the world to create an experiment situation.  (I know very well the numbers of tasks you, as caregivers, have to do; but we also might be spared some of the distractions of work and world.)  Let us experiment together for one week noticing the good in the world around us and thinking thoughts that align with the lives we want for ourselves.      

Sep 9, 2011

Be gentle with ourselves

 "Ten Thousand Joys & Ten Thousand Sorrows", by Olivia Ames Hoblitzelle, she writes, "The strain of helping Hob (my husband) with his disease kept stretching me to the breaking point. My frustration and anger concealed the grief that lay at deeper levels ... The ravages of this illness spark powerful feelings in everyone ... We need to experience our humanness, including all the so-called dark emotions like anger and fear, because they are natural given the situation."

I agree that frustration and irritation are normal in this role of providing caregiving for someone with dementia, or any other terminal and progressive disease.  But, feeling angry very much of the time is not good for us; and if you find yourself feeling anger or irritation more than a tiny percentage of the time, I think we need to evaluate the situation and make changes so that we are experiencing less stress.  Get more respite help in, consider placement in assisted living:  whatever it takes for you to feel more equilibrium in your life is good for you and ultimately good for the person for whom you are providing care.     

Sep 8, 2011

Heaven is here

"All the way to heaven is heaven," Saint Catherine of Siena.

Another quote from a respected mind telling us that heaven is right here, right now.  How do we reconcile this idea with the weather extremes earth is currently experiencing, the global economic upheaval, the threats of terrorism -- even more prominent with 9/11 coming up?  One way I reconcile this idea is by noticing what I notice in a single day.  Do I notice that Dwane complained (and, yes, sometimes I do)?  Do I notice that I felt left out in a social gathering?  Do I notice a body ache or pain?  Or, do I notice the beautiful fall morning, the level of health in my body, the abundance of produce this time of year, the serenity of my home? 

What if it is as simple as that?   Making heaven here right now by deliberately paying attention to the good and the blessings in our life.  If Victor Frankl can marvel at a flower in the midst of a concentration camp, surely we can find the beauty in our lives. 

Sep 7, 2011

Grateful attitude

"A single grateful thought toward heaven is the most complete prayer."--Gotthold Ephraim Lessing

The above quote is so often repeated in one form or another that it must contain truth.  I was recently with someone who focused on negativity:  noting the pain or shame in other's lives.  It was interesting to observe.  It reminded me to increase my own practice of nonjudgment and gratitude.  It is so easy in our human experience to see all that has not gone the way we want or think it should, all of the things that seem imperfect, all the dreams that did not come to be.  Is it possible that heaven is here on earth, and that it just takes a change in our perspective to realize that?  Certainly, it does seem true that there are both good and bad events for us to notice.  Does it serve us to notice the negative?  I don't think so.

Sep 6, 2011

Handling our emotions

"Anger:  A natural emotion for Alzheimer's caregivers." Angela Lunde, Mayo Clinic Staff.

Let's be honest.  As caregivers for dementia we have a very, very tough job, and with that job come many emotions:  anger, frustration, fear, imprisonment, impatience, irritability; as well as, the emotions society generally considers to be more positive:  contentment, acceptance, peace.  As human beings it is important for us to allow our feelings.  We can always choose not to act on them (and often need to choose not to act on them), but it is considered good mental health to notice and experience them.  Some people involved in body energy work think that emotions that are not processed (honored and felt) can become stuck in our bodies, with resulting physical symptoms.  I think this is accurate.  One time, after experiencing a significant loss in my life, I was having a massage and began to weep as the massage therapist massaged my legs.  It is my belief that my body had held some of my emotions and was releasing them with the assistance of the massage.  This is a tough job:  caregiving; let us honor that sometimes we feel angry about it. 

Sep 5, 2011

Medications

" It may be difficult to tell if Alzheimer's drugs are helping, because their effect is usually modest." Mayo Clinic Staff.

The two medications most often recommended for dementia are Aricept (now in generic form) and Namenda.  The latest Mayo Clinic Alzheimer's newsletter has some information about how each of these medications work and when a person might consider stopping taking them.  The newsletter suggests that if we see a sharp decline in the person with dementia, that we consult a physician.  Both of these medications have side effects, and that is always a fine art:  deciding if the benefit of the medication outweighs the adverse side effects.  It is important to have a doctor you trust on your team of supporters. 

Sep 4, 2011

Problem solving

"Every problem has a way of coming out just right." Emma Curtis Hopkins.

Isn't that a lovely mantra?  What if we chose to have that attitude toward life?  I think things would go more smoothly; life would be less stressful.  If we were to have the attitude that problems are a part of our human experience and that all problems turn out just right, we could quit holding our breath and just trust.  Trust that life is unfolding exactly as it is meant to, and that all will turn out just right. What problem in your life can you choose to believe will turn out just right? 

Sep 3, 2011

I believe in you

"I believe in love, I believe in music, I believe in magic, and I believe in you," Don Williams.

I took Dwane to see Don Williams in concert last night.  I am not really a fan of country music, but Don Williams' music is lovely with touching lyrics.  The singer is a favorite of Dwane's.  I had requested seating to accommodate "mobility impaired", and was surprised at what a lack of understanding exists for what might entail "mobility impaired".  There was scrutiny and questioning because he was not in a wheel chair.   There are so many degrees of mobility impairment, and it was a chance to educate people.  It was not that we were taking seats others needed, but just a process for the concert organizers to determine what kind of services might be best to provide.  A nice night with good, soulful music and some laughter with the preceding act of comedian/singers. 

Sep 2, 2011

Attitude of joy

"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." Herm Albright.

Isn't that a cute reason for maintaining a positive attitude?  But, annoying people does not need to be our goal.  Instead, we can have as the goal the best maintenance of our overall well being, and I can think of nothing that supports that as much as a positive attitude.  Abraham lists as the most positive emotions:  joy, knowledge, empowerment, freedom, love, and appreciation. (Ask and It is Given by Esther and Jerry Hicks)  It is worth keeping a list of those emotions before us and to maintain our thoughts to keep us in those emotions.  It can be done.   One thought at a time.

Sep 1, 2011

Joy of life

"Think of a tree, or any living event that emerges from within itself.  It is the degree to which it obeys its inner commitment to unfold a certain pattern that enables it to overcome all of the resistance and obstacles in the environment, and to demonstrate itself as a vast and vital manifestation of the energy of life," Swami Chetanananda.

Driving recently in a rural area, motion caught my eye, and there frolicking on someone's lawn in the midst of a herd of bighorn sheep was a lamb.  What a joyous treat!  In my life I have only seen a baby bighorn sheep a couple of times.  The sight brought a smile to my face and a joyous expansion to my heart.  The herd was sedately eating the green lawn grass, but the lamb seemed to be leaping for joy.  The lamb was a good symbol for how best to approach life.  Perhaps we are too mature to leap for joy, but we can unleash our enthusiasm for life.  If Abraham is correct in that it is our emotions which attract and create the events of our lives, then it behooves us to reach for the higher emotions:  such as joy, contentment, enthusiasm and appreciation.
  By Carl Brenders