Jul 31, 2011


"You may have habits that weaken you.  The secret of change is to focus all your energy, not on fighting the old, but on building the new." Socrates, The Way of the Peaceful Warrior.

Psychologists say that anything done regularly for about one month becomes a habit.  We might want to be careful and watch what we are doing day after day.  Are our thoughts ones of peace and joy --- or are they ones of worry and frustration.  The month is going to occur anyway, so we might want to make sure that we are filling our days with habits that support our own well being.  Do you exercise every day, or do you allow that to get pressured out of your day?  Do you eat nutritionally, or in a hurry grab just anything.  Do you turn to alcohol, over eating, numbing out in front of the tv or computer -- in order to handle the stress of caregiving?  It is easy when feeling stressed to turn to activities that may briefly relieve the stress, but do not serve our health in the long run.  

Habits can either support us or hold us back.  Let's be sure we are creating healthy and supportive habits.

Jul 30, 2011

Affecting our world

"Your greatest work will be done in  your own God-appointed channel."

Oh very, very true.  And, this work may not be just the obvious being the gracious, kind, compassionate beings that we are.  It may also be setting boundaries, not letting others take advantage of us or the person for whom we provide care, saying no to behavior we do not want, choosing relationships which encourage us.  Sometimes it is tempting to wish we could be called to do great work in the world, work that might make a difference for many.  But, I think, for most of us, the work we do and the impact we have - positive or not - will be in our own little worlds in the relationships closest to us, in our own communities.

I want to thank the people who have taken the time to make encouraging comments.  Oddly, the google function does not allow me to comment on the comments!?  It used to, but I can't seem to any more.  I also want to welcome new readers and to thank you who have been with me.  Thank you!  The support we give one another is so important. 

I just completed a training for some of my licensures on the brain and the effect of drugs on the brain.  Very interesting.  And I found myself applying the information to the damage the Dementia with Lewy Bodies is having on his brain.  Brain health is so important.  Let us, as caregivers, be sure to take care of our own brains with exercise, good nutrition to include omega 3, fun and relaxation, and keeping it free from toxins.  It can be tempting to use the socially-accepted drug, alcohol, to cope with the stresses of this caregiving, but that is a very, very dangerous road to tread. 

Jul 29, 2011

Caring less

Mayo Clinic's current Alzheimer's newsletter is so good that I have decided to copy/paste it to my blog today.  Yes, I think there is truth in this idea that we can love better by caring less.  For whole article:
"In my experience, Alzheimer's caregivers are often invested physically and emotionally in the caring around day to day tasks and the challenging behaviors their loved ones with the disease can exhibit. Common behaviors in a person with Alzheimer's can include agitation, apathy, delusions, paranoia, and sleep problems to name some. And caregivers care that their loved one is confused, agitated or unable to sleep.
For many Alzheimer's caregivers, when they care, emotions such as worry, frustration, guilt and agitation are often an unwelcome outcome of caring — and that, I believe, is when unconditional love can get buried. Beck writes, "Unlike 'caring', the word love has no such range of meaning: Love is pure acceptance." So, to love, maybe we do need to care less."  Angela Lunde, Mayo Clinic.

Jul 28, 2011

Goals within caregiving

"Striving and sustaining effort toward worthwhile goals are the stuff life is build around.  Without goals, without work, life become meaningless.  Without goals, vision or purpose, we are susceptible to depression, boredom or dissipation of time and energy."  Dr. Val Farmer. 

So, how do we have goals within caregiving?  One goal I set is to create a positive and structured environment.  Dwane does better when things are planned, when he has plenty of time, and when things are not spontaneous.  So, we have a structure to our days, so that positivity, respect and harmony may prevail.  What other goals might be worthwhile?  Dwane has some unexpected and unavoidable surgery coming up.  I have the goal of having enough support in place to take care of him and my own well being post surgery.  In fact, more support is needed in all areas now, and that is a goal I have implemented.  I have also begun to think of life after this disease takes him.  How does he want his service planned?  What memorials?  We have already decided upon the allocation of many of his things, but what about the rest?  This may seem macabre to some of you, but I am very much a realist.  We are dealing with a progressive and terminal disease.  In fact, Dwane has passed some of the predictions for longevity within this illness.

Setting goals and achieving them needs to be in balance with creating pleasantness in one's life right now.  In fact, I think that, and nurturing important relationships, are the most important goals. 

Jul 27, 2011

How to help

"Self love, my liege, is not so vile a sin as self neglecting."  William Shakespeare, Henry V

Healthy self love is vital.  It may be especially vital to those of us in caregiver roles.  It is too easy to be gobbled up by the all-encompassing tasks and responsibilities required of us as caregivers.  Accepting help from others is one way to demonstrate self love.  So, for those people who would like to be of help to us, here are some suggestions:
1.  Come and visit as this sometimes brings out the best in the care receiver, but call first to make sure it is a good time.  The schedule of any caregiver is so tightly packed that you can create another burden if you come when it is unhandy for him/her. 
2.  Ask what would be helpful for you to do.  We do need help.  It is a godsend that our son-in-law asked if we had a project and was willing to repair our greenhouse.  You may see things that you think need to be done, but ask the caregiver what he/she would like.  There may be reasons they don't want that task done.
3.  Offer to take the care receiver, but do not be hurt if he/she won't go.  Remember that anxiety is one of the most common characteristics of dementia, and the caregiver, among all the other tasks, serves as a "safe harbor" for the care receiver.  The person with dementia may be too anxious to go with you.
4.  Invite us to events and parties, but be prepared that because of a behavioral meltdown or scheduling problem, we may need to cancel at the last minute. 
5.  Offer to bring in meals, help with yardwork, give respite to the caregiver, take the care receiver to one of many appointments.
6.  And, thank you for caring. 

Jul 26, 2011

Ending 3rd year

"Some people with DLB (Dementia with Lewy Boies) die within 2-3 years of diagnosis, while others may do well for 5-10 years," Mayo Clinic Patient Education.

We are coming near the end of our third year from the diagnosis of Dementia with Lewy Bodies.  A milestone from which I can take perspective.  Overheard recently was someone saying, regarding Dwane, "Isn't there something more that could be done?"   My fellow caregivers, I think you can imagine how I felt.  The reason Dwane is doing as well as he is is because of my advocacy.  Advocacy for some of the best medical care in the world (Mayo Clinic) -- he is even in a research project there because of my completing forms, advocacy for care with audiologist, physical therapists, podiatrists, alternative care practitioners, advocacy with insurance companies.  All of this in addition to setting up a positive and supportive home environment with good nutrition, positive tone, and support for some body movement.  I am not saying this to talk about all that I do; I am saying it on behalf of all caregivers.  We are advocating for the best possible care for the person for whom we are caregivers --- to give them quality of life in the midst of their progressive and terminal disease. 

So, as we end our third year, Dwane is doing better than I thought he might be; while I also see steady but erratic decline.  Difficulty handling the feeding process, so I have implemented different utensils.  Difficulty with walking, so I monitor that.  Most of all difficulty with judgment and reasoning, so I make sure he understands and I try to prevent dangerous activities -- like fixing his disabled motorcycle that he would like to ride.  It feels like we are slipping downhill faster in recent months. 

Jul 25, 2011

Being happy

"He that thinks himself the happiest man, really is so," Charles Caleb Colton.

Joanne McFadden cites some research (she does not say source) that 50% of happiness is from genetic disposition, 8-15% is from life circumstances and 40% is from attitude.    Hmmmmm.  I think we all know of people in difficult and impoverished conditions who are happy, and conversely we know or have read of people of wealth who are miserable.  So, at least 40% of our happiness is of our own choice.  I happen to think the number is even larger.  What can we do to be happy as dementia caregivers, or in whatever are our life circumstances?  One very effective tool is to focus on what is going right.  That includes focusing with our thoughts, our conversations, our actions.  It is one reason I avoid negative conversations or gossip.  They are detrimental to my own happiness (as well as dehumanizing whoever is topic of the negativity).  I pass along positive comments to their source, but I do not pass along negative information.  In essence, we can be happy largely by choice, regardless of our circumstances.  What is going right in your life right now?

Jul 24, 2011

A right time

"To every thing there is a season, and a time to every purpose under the heaven  . .... a time to keep silence, and a time to speak...."  Bible.

Do you ever consider what is important to say and what is important not to say?  I do.  In the 1970's I read the book, The Road Less Traveled, by M. Scott Peck, and I really like what he said about that.  As I recall from memory, he said that he weighs what he speaks against the criterion that it has to be in the best spiritual interest of the other person to hear what he might have to say; otherwise he does not say it.  What a wonderful measure against which to speak or not.  There are so many words spoken, some of which seem spoken with the intention of inflicting harm.  Perhaps it is time for us all to consider if what we want to say will be a spiritual blessing for another person, or not.  It would seem that there would be less said, and less damage to people, if we spoke with this consideration in mind. 

Consider the next time we feel we have something to say:  Is this in the best spiritual interest for this person(s) to hear?  A wonderful criterion of whether to speak or not.

Jul 23, 2011

Unconscious beliefs

"Man manifests, on any plane, the sum total of his subconscious beliefs." Florence Scovel Shinn.

I love the writings of Florence Scovel Shinn; writings which support my own journey --- that which we have in our subconscious can hinder or shape the direction of our lives and our own happiness.  So, how do we know what is in our subconscious?  Dreams are one way, and there are a myriad of books to help one understand their dreams.  Another reliable way for me is to notice those people I particularly admire or dislike; they will contain aspects of my own subconscious.  There are some who believe that any characteristic of humankind is part of us all; and, if we do not accept those aspects, they will be projected out onto other people in judgments and fears.  It is an exciting journey to recognize, accept and integrate the aspects of ourselves of which we have been unaware.  It is an integral part of what I think is the interior journey; the path to being fully human.   Some teachers say it is also the path to successful living.

Jul 22, 2011

Pet Peeves

" I love mankind; it's people I can't stand." ... Charles M. Schulz

Pet peeves is a funny phrasing.  It implies that we have annoyances that serve us, that we nurture and enjoy.  Perhaps this is true.  I have been a long-time practitioner of identifying and accepting aspects of myself that I don't like or want to recognize; which otherwise results in projecting those aspects onto others.  Jung calls these the "shadow" aspects of oneself, and I do believe that what we do not recognize in ourselves is projected onto others:  those aspects we fear or dislike or even ones we admire.  So, how is it that I still have some pet peeves?   It creates an opportunity for further looking at myself, my intolerances; but in the meantime:  2 pet peeves:
1.  People who take up more than their share of the conversational space.
2.  People who tell me what to do.  This is different from people who reflect back to me, without any motives except my own best interest, aspects of myself or behaviors which are not serving me.  Like recently when two people who love me told me they were concerned about how stressed this caregiving was becoming for me.  One can tell the difference:  when one is being told something intended for one's own best interest and when one is being told something for other motivations.  It has always been very curious to me, that other people think they can know what is best for me or anyone else but themselves.  Even as a mental health practioner, I rarely give advice - even when asked.  It is, I think, a good practice.

Jul 21, 2011

Relationship selectivity

"I just do not hang around anybody that I don't want to be with.  Period.  For me, that's been a blessing, and I can stay positive.  I hang around people who are happy, who are growing, who want to learn, who don't mind saying sorry or thank you  . . .  and are having a fun time."  John Assaraf

What wonderful advice.  I would add that I want to hang around people who are honest, keep agreements, are respectful and kind, and ones who want the best for themselves and others.  I do not want to be with people with whom I have to be on guard, people who verbally assault others, people who have the habit of self entitlement, people who do not speak the truth with love and respect. 

With the extraordinary burden and stress of providing caregiving, I am henceforth choosing to be only with people I want to be with; ones who live the above qualities.

Jul 20, 2011


"There is no compassion without many tears." Henri Nouwen.

Do you ever wish someone would say to you, "I so appreciate the wonderful care you are providing for him/her"?  I have to admit, I do.  This is so all encompassing, that it would be nice to know that someone else notices and appreciates the sacrifices we are making to provide care for the person with dementia.  After all, we would not have to do it. 

Since there is nothing we can do to change the behavior of others; perhaps, instead, we can be sure to thank people who do kindnesses for us.  Who extended a kindness to you today?  A woman in a long, slow check out line provided kindness and humor for me.  Isn't it odd that it sometimes seems it is easier for strangers to treat each other well?  We can make it a habit to be especially kind and appreciate those in more intimate circles. We can model the behavior we desire from others.

Jul 19, 2011

Challenges or opportunities?

"It is the difficult things that we meet that enable us to bring into action the greater power that is within us; difficulties, therefore, are the most valued of opportunities, and if taken advantage of as such, will always be met with joy." Christian D. Larson

Intellectually I believe the above quote, and, certainly, being caregiver for someone with dementia is a very difficult situation.  If it were not enough that one takes care of all business (to include trying to get insurance companies to pay), all repairs and maintenance, all medical, nutrition,  matter of well being and safety, all advocating for best possible care --- then, too, one can add facilitating relationships, dealing with family and friends.  All with likely no acknowledgement or expressed appreciation, and maybe even criticism.  All while trying to have some quality of life oneself.  When I said "yes" to helping Dwane see himself through this progressive and terminal illness, I knew it could also facilitate a new layer of growth and development for me.  It is just hard to see that in the day-to-day stress and endless responsibilities. 

"While no one enjoys being uncomfortable, we do have a choice on how we handle that discomfort of growth when it arises.  We can let it set us into a tailspin, or we can recognize it as a grand invitation from the Universe and seke out spiritual support, even giving thanks for the gifts that come with the experience," Joanne McFadden.

Jul 18, 2011

Good with the bad

"There is no winter harsh enough to withhold the promise of spring." Karen Kaiser Clarke.

Part of being human, it seems to me, is to have bad experiences.  Of course, if we could attain the level Buddha is said to have obtained, we would not judge experiences as either good or bad -- we would avoid that kind of aversion and attachment.  But, humans that we are, we are likely to have some experiences that we would prefer not to have. 
Misunderstandings, words spoken harshly, feelings of being left out or over looked, misinformation, agreements not honored:  all of these are part of human interactions.  Especially when we do not know each other well enough to guess at the intentions of the other.  So, what do we do with all of these opportunities to misunderstand and perhaps offend?  First, I think it is important to know some misunderstandings are inevitable.  They are not personal.  We cannot know what issues the other person is dealing with that may cause the misunderstanding. 

My rule of thumb is:  acknowledge the misunderstanding, apologize for any hurt I may have caused, and move on.  I can only be responsible for my own actions; not the reactions of others.

Jul 17, 2011

Sum of our beliefs

"The most destructive force you and I have -- and the most constructive -- is our own unconscious emotional thinking and feeling state." Ernest Holmes.

I love administering the Rorschach Ink Blots because this projective instrument can reveal so much about a person that is hidden from him or her.  Hidden beliefs are very powerful.  I have seen them control the way people behave, the relationships they seek, the success they attain.  Joanne McFadden says, "If we are not experiencing what we want to experience, most likely there is a hidden belief or two at work.  We can expose those hidden beliefs by looking at a situation in our lives that we want to change and asking ourselves what belief created that situation in the first place."  This seems like good practice for any situation in which we find ourselves, even being a caregiver for dementia. Our hidden beliefs are very, very powerful.  Isn't it better to know what they are?  In the case of being a dementia caregiver, do you have the belief that you should sacrifice your own health and happiness to care for someone?  What are your beliefs around caregiving ?  Around receiving help?  Around paying someone to give you respite?   I believe we will be rewarded by taking a very good look at our hidden beliefs.  Having them in the open, in our conscious awareness, frees us from living from them. 

Jul 16, 2011


"This matters to him, I think -- to feel, at least occasionally, that he doctors in obscurity, so that he knows he doctors first of all because he believes it's the right thing to go.  If you do the right thing well, you avoid futility."  Tracy Kidder about Dr. Paul Farmer.

Just finishing a good book for our local library's book club, Mountains Beyond Mountains, about the work of Dr. Paul Farmer in providing medical treatment for the poorest of the poor.  Thought provoking.  It has also caused me to consider that what wealthy nations do is not always for the best for the people of a region. Much of what we do as caregivers, we do in obscurity.  That is one reason it is so important to be aware of elder abuse:  both for the care receiver and for the caregiver.  It is encouraging to know that when we are doing the right thing well (in providing respectful care or in some other right actions), then what we are doing is not futile. 

Dwane's daughter and family left yesterday.  A good visit.  I am so glad he got to see them.  He was so excited they were coming, and he did what I have noticed he does to show he loves people:  he spent days readying the vehicle that we lent them.  While he is not always able to communicate nor be interactive, he does show his love through his action toward people -- as much as he can.  It was good to get to know them all better.  And, they were instrumental in fixing my greenhouse, for which I am so grateful!!

Jul 15, 2011


"Life is an adventure in forgiveness," Norman Cousins.

I had a recent conversation with a friend about forgiveness.  It does seem like life continues to give us experiences in which we have an opportunity to forgive.  Some people even think the purpose of life is to forgive.  "True forgiveness is the real purpose of life, but you've got to choose it in order to make it yours," Gary Renard.  This author goes on to say that we can choose forgiveness to the extent that we even pre-forgive; thereby avoiding some experiences in which we might need to learn to forgive.  He also says that "forgiveness is an attitude"; that, instead of judging, we can have an attitude of forgiveness. 

Whether any of this is true, I began a long time ago to believe that when we do not forgive, we are forever tethered to the person we have not forgiven.  That alone gives me impetus to forgive!  Forgiveness cuts the thread which binds us to the other.  Forgiveness does not actually have to involve the other person.  We can do it through visualization, or ritual, or thoughtful choice.  I believe that it is important to forgive small and big things.  Whatever I don't forgive is affecting my peace of mind, and nothing is worth losing my peace and well being.  We can also forgive memories or forgive someone who has died; they do not need to be alive and/or interacting with us for us to forgive.

Forgiveness is a choice.  A good choice.

Jul 14, 2011

Being right

Rumi's field:  "Beyond right ideas & wrong ideas there is a field. I will meet you there." 

I often meet with clients who are adamant and entrenched about being right.  Perhaps it is easy for me to recognize because it was also a pattern of my family of origin.  A lot of energy went into being right.  There is a good side to that.  It fosters curiosity, learning, looking up answers, sometimes stimulating conversations.  And, there is a negative side to wanting to be right:  rigidity, closed-mindedness, arguing.  As in most qualities, it seems to me that taken to an extreme, there is danger; but in balance, there is life.  We all know the famous quote, "Would you rather be right or be happy?" by Jampolsky.  It is good to consider that question when one finds oneself becoming entrenched in an opinion, a belief, or a thought. 

Would you rather be right or would you rather be happy?   A very good question for each of us to consider.  I would rather be happy. 

Jul 13, 2011


"Dreaming takes place during those relaxed times where nothing is scheduled and we are not focused on our never-ending-to-do lists.  In those quiet, unscheduled times, we can ask ourselves where we are living small." Joanne McFadden.

Bone tired.  That was how I recently wrote that caregivers were describing themselves or being viewed by others, and now I am too.  I am working in doctor appointments and other errands, neighborhood meetings, time with more visitors from out of town and resulting activities -- all very good and all a lot in addition to ordering and dispensing medications, doing bills, etc., etc.  I forgot to put the garbage out for collection; a sign I am overloaded.  That and the headache.

News from the doctor is foot surgery is imminent.  The ulcerated corn which has infected and invaded bone has not responded fully to the brace, and now surgery.  And, the last surgery he had we were told to avoid any surgery because of the extreme hallucinations and belligerence caused by anesthesia and pain medications.  So, frankly, I am scared.  They will operate and then send him home with me. 

Today I will take time to review.  I do not have enough support and respite.  I believe I am living small in the area of support and respite.

Jul 12, 2011

Supporting one another

Yet perhaps our greatest gift is our ability to enter into solidarity with those who suffer.  Compassion can never coexist with judgment."  Henri J. M. Nouwen.

With a group of friends I was discussing the importance of supporting one another.  One woman shared the act of supporting her husband when he had cancer, another supported a family member during a professional transition, another was supporting an aging parent.  When life presents us with significant challenges, like being a caregiver for someone with dementia, then it is important to create support systems that truly support us.  For me, that is several spheres of support, with people from:  our financial team, legal team, medical team, respite providers team, services rendered team, spiritual team - to name a few.  Then there is a more intimate team of supporters:  those trusted and nonjudgmental listeners, who love us and want to support us during these difficult times.  I know that I cannot survive well without this more intimate circle of support.  What spheres of support do you have?  Is there need for more?

Jul 11, 2011


"I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much," Mother Teresa.

I always smile when I read this familiar quote; a play on words passed down to comfort someone in times of stress.  The idea that God does not give us anything we cannot handle is so often repeated, that perhaps it is true.  (Although I am certain we can each think of someone who took their own life presumably because life handed them more than they could handle.)

Being a dementia caregiver can sometimes seem more than one can handle.  I spoke with a friend whose husband has dementia, and she admitted that she was at the end of her rope.  So tired of having no life of her own.  It is so good to share support with others who are going through similar things, and to come up with ideas of how to manage it.  What can we do to handle this task of dementia caregiver which life or God has trusted us enough to handle?   One thing, I think, is to make sure we do not entirely give up our own lives. That may mean hiring assistance so that we can carry on the activities and joys which comprise our own life.

Jul 10, 2011

The journey versus the end

"You can never have a happy ending at the end of an unhappy journey; it just doesn't work out that way. The way you're feeling, along the way, is the way you're continuing to pre-pave your journey, and it's the way it's going to continue to turn out until you do something about the way you are feeling."  Abraham.

It seems that the above quote is true (more ongoing research indicates that our feelings, thoughts and attitudes determine our health and well being), and it does not matter if your journey at the present time is dementia caregiver or something else.  Of one thing we can be certain, all things do end.  This role as dementia caregiver will end.  How do we want it to look in the meantime?  Amidst all of the 'to-do's' we must intermingle well being.  Even better, for our highest well being we need to intermingle well being with the 'to-do's'.  An activity to promote this is spending time every day talking (or if your care receiver can no longer talk -- showing photos) of the good times we have had and/or good times yet to come.  It is a wonderful opportunity to be creative.  A therapist I once knew recommended spending 3 minutes communicating in order to enhance a relationship.  Of course, the 3 minutes must be positive and constructive conversation.  What can you do today to make the journey more fulfilling?

Jul 9, 2011

Caregiver Burnout

"Burnout isn't just an occupational hazard limited to work.  Whenever there's a gap between our ideal situation and the reality that we live in, the conditions are ripe for burnout." Joan Borysenko.

A dear friend sent me an article on "Compassion Fatigue".  This is a topic I am familiar with because compassion fatigue is a hazard for mental health professionals, and I have attended several workshops on how to avoid it.  But, her sending me the article caused me to think of an even more likely role in which to have compassion fatigue or burnout, and that is as a dementia caregiver.  Another friend was relaying to me a story about a woman providing caregiving to her husband, along with an aide, and my friend related how bone tired the woman seemed.  I saw a health practitioner today who is also providing caregiving to her mother, and she, too, appeared bone tired.  Caregiver burnout.  How do we avoid it?

Dr. Borysenko relates coming to terms with burnout (in her new book:  Fried:  Why you burn out and how to revive) and discovers it is pride which has caused her to become so task oriented that she was burned out.  Whether it is pride or not, providing 24/7 caregiving to anyone is burnout waiting to happen. 

Having too many things to do, and who doesn't as a dementia caregiver?, can cause us to let fall out of our life the very things that sustain us.  For me that is prayer, exercise, fun, some unscheduled time, a sense I am contributing to something bigger than myself, human connections, quality sleep, massages, good nutrition, and creativity. 

What sustains and replenishes you?  It is critical that we take care of ourselves.

Jul 8, 2011

Having a vision or plan

"The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it," Michelangelo.

That seems true, and we can apply it to any area of our lives, to include being caregivers for someone with dementia.  The reason I chose the title for this blog as living graciously with dementia is to have a vision for how I wanted to be in this role as caregiver.  It has made all the difference to me that I know how I want to show up.  I could have had the goal of simply surviving this task, but that was not good enough.  I want to do more than survive; I want to thrive in the role and as a result of having done the role with graciousness.  Think of the people we can remember who had a dream they accomplished:  John F. Kennedy dreamed of putting a person on the moon; Martin Luther King, Jr. dreamed of a time when there would be no prejudice and injustice towards others because of race.  These are just two of the better known dreams of well-known people. 

One thing is true:  we are in this role of being a dementia caregiver (or whatever other role you are doing that presents challenges).  We can do it with a dream of how we want the process and outcome to look, or we can merely get by.  I have a dream.  I hope you do too.

Jul 7, 2011

What do you want?

"The indispensable first step to getting the things you want out of life is this:  decide what you want," Ben Stein.

Far too many of us have had our dreams of what we want ignored or interfered with by other people, to the point that we have gotten out of touch with what we want and instead are doing what will bring the approval of other people.  Parents, educators, and other adults may have persuaded you that you should do or be something, to the point that you have lost track of what you want.  Being a caregiver for dementia can be so demanding that in this role, too, we can lose track of what we want.  After all, who has time to reflect on what one wants when one is supervising, assisting, monitoring, cajoling --- plus taking care of all the tasks necessary to keeping a household solvent. 

One thing we can do is think about what we want in respect to this task before us, this task of caregiving.  For me, I want harmony, ease, safety, as well as the basic needs of food and shelter.  But I also want fun, recreation, exercise, time for meditation/prayer, good conversations, supportive relationships, laughter. 

What is important to you?  How can we have what we need for our own well being?

Jul 6, 2011

Inner well being

"When you realize how perfect everything is, you will tilt your head back and laugh at the sky," Gautama Siddhartha Buddha.

What if it is true that the most functional way to approach life is to consider that everything is already perfect?  What if we really do create life from our attitudes, feelings and thoughts?  We may never know the absolute truth of this in our human experience, but what is the harm of implementing this approach -- just in case?  Joanne McFadden suggests, "we are called to enter a state of complete acceptance that we have everything we could ever want or need.  We know that that which we give out comes back to us multiplied."  It seems that the essence of these words comes from so many different sources that there must be truth therein.  And, we can also know that we benefit our bodies and minds when we choose to see that all is well.  All is very well, indeed. 

Jul 5, 2011


""Guilt trips are about violating boundaries.  Guilt trips are about control.  It is a way of manipulating people to get a desired outcome through indirect and passive-aggressive tactics." Dr. Val Farmer.

As dementia caregivers, it is nice when people offer to help us.  But not all of the help offered is in our best interest.  Sometimes people have ulterior agendas.  When the help that someone is trying to force upon us is not in our best interest or in the best interest of the person for whom we provide care, then we need healthy boundaries.  Dr. Val Farmer offers some tips for establishing boundaries when people are trying to control us or force some help that is not helpful:
1.  Mirror back to them what they are saying.  Confront them with their own words. i.e. "Are you saying I am not providing good care if I don't do what you want me to do?"
2.  Try to find out what they want, and tell them the options that you are willing to consider.
3.  Don't let them suck you into their plans; make your own plans and be very clear about them.
4.  If they try to inflict guilt, develop thick skin.
5.  Don't be afraid to say no, and if necessary, use the broken record technique, which is repeating what your plans are.
6.  If possible, try to get the issue clearly defined (although I find this is a hard one with people who are not willing or able to honor boundaries -- they also seem to have trouble being clear and forthright about what they are after.)

Help and support from others is wonderful, but only if it is in the form that is help and support for us --- only if it is the form of help we want.

Jul 4, 2011

Well being

"We didn't say: when you feel good you are allowing good, and when you feel bad you are allowing bad (although it may translate into your experience in that way). There is only a Source of Well-being—which you are allowing or not."--- Abraham

What if that is true?  That there is no bad, no evil; only goodness which we allow or not?  Intriguing thought, and it seems like a very good practice to consider.  Only goodness prevails, other people want only the best for us, only good experiences abound, only health exists.  What if only these good things exist, and our practice is to bring ourselves into a place of allowing that goodness in our lives.  I sometimes use the rule of thumb -- if a practice can cause no harm, why not try it?  It would seem that this practice could cause no harm, why not give it a try.  Look for, anticipate and allow goodness in our lives.  On the day that America celebrates its freedom; let us celebrate our freedom from any limiting beliefs or practices --- and let us implement practices that better serve our well being. 

Jul 3, 2011

Elder Abuse

"Elder abuse can take many forms: financial exploitation, physical abuse, sexual abuse, neglect or exploitation. It typically centers around a relationship of trust which is exploited to the elderly person’s disadvantage. The common denominator is the use of power and control by one individual to affect the well-being of an older victim. In 1987, Congress offered this definition of elder abuse: the domestic and institutional abuse of persons over age 60 involving physical, sexual, and emotional/psychological harm, as well as neglect, self-neglect, abandonment, and financial exploitation."  Tom Simmons, LLP.

As caregivers, we need to be vigilant to give ourselves enough breaks to enable us to keep our patience, and we need to be vigilant to protect the person for whom we provide care from being abused or taken advantage of by others.  Statistically, most people who are abused are done so by those they know well:  often relatives.  It adds another responsibility to our long list, but I think it is very important that we be informed and vigilant to protect our care receiver from abuse and exploitation.

Jul 2, 2011

Caregiver Relief

"Despite the useful caregiving strategies many of you share, clearly the stress of caregiving is the most consistent theme in your recent comments. In my experience, one of the most significant ways caregivers cope is by taking regular breaks." Angela Lunde, Mayo Clinic.

This week's Mayo Clinic Alzheimer's Newsletter has some excellent suggestions about the importance of having caregiver relief, how to do it, and to do it sooner rather than later.  The author recommends getting respite care in long before the caregiver thinks it is necessary, and to not elicit the permission of the care receiver in securing respite care (saying we will never get permission from them).  She suggests instead to say something, such as, "I am having Martha come in because I need some help."  She also says that guilt and denial are the leading reasons, along with the financial burden, for not getting respite for ourselves.  I agree completely!  For our own well being, as well as that of the person for whom we provide care, let us create consistent and thoughtful respite for ourselves.

To read the entire article:    http://www.mayoclinic.com/health/respite-care-strategies/MY01811/?utm_source=Alzheimers&utm_medium=email&utm_campaign=TargetedNewsletter 

Jul 1, 2011

Lost items

"I have learned silence from the talkative, tolerance from the intolerant, and kindness from the unkind.  Yet, strange, I am ungrateful to these teachers." Kahlil Gibran.

The above quote seems so true, to me at least.  Life's greatest teachers are not always ones for which I am grateful.  Dwane had several very good days; I think he was so excited about his daughter coming from such a long distance to visit.  But the adrenaline of that, or the nature of the variation of lucidity in Lewy Bodies Dementia, has shifted.  In just the last two days, he has left his glasses, his hat, and - yesterday his hearing aid!!!   I have become accustomed to scanning an area to make sure nothing is left behind; and good thing.  What have you found to help prevent loss of valuable items?  Coats, hats can be replaced.  But bigger ticket items like glasses and hearing aids? 

The visitors have cleaned up the debris left from the caved in greenhouse and built a new one on the site.  It feels like one of the old times "barn raisings" (friends, neighbors and relatives coming to build a new or damaged barn), and I am so grateful to have this accomplished.