Jul 31, 2010

Creating reality

"Our perceptions create our reality," Chad Cameron and Isaac Allen.

If our perceptions create our reality, how can we take a challenging life situation and use it to change our lives? That is a question to consider whether living with an addiction, a terminal illness such as dementia, or any other difficult human situation. The above authors and filmmakers challenge people who hate what they are doing to consider that they are then doing out of obligation, not inspiration. They suggest that a simple technique is to ask the situation to show us how to do this situation from inspiration, and the aspects of the situation will change. The shift may be an inner one of attitude, but a shift nevertheless.

So, how can we each live the life experience we are having from inspiration; not obligation?

Jul 30, 2010

Heading off anger

"An ounce of practice is worth more than a ton of preaching," Mahatma Gandhi.

One of the hardest things for a caregiver, in my opinion, is to head off what the authors of the 36 Hour Day book call "catastrophic reactions" or angry reactions. There are some wonderful tips in the latest Mayo Alzheimer's Caregiving newsletter:

"In people with dementia, when we use phrases such as "You can't," "I want you to," "You need to," "I told you," "That's not what I said," and so on, we can make a tough situation worse.

Consider this, if we as caregivers can respond to our loved one with dementia in a way that offers them a sense of control or an illusion of control, we can diffuse reactions of anger and the outcome may be more desirable. A way to do this is by validating their feelings, joining their agenda, and lastly redirecting. Think of it as a 3 step process. Here's what this could sound like using Vicki's scenario." (To read the rest of this article go to www.mayoclinic.com to their health information section.)

Great advise and something that has the potential to make our lives easier.

Jul 29, 2010

Music as healing

"Anyone can experience the healing power of performance art," Masankho Banda.

A personal story. After attending the harp concert, Dwane was reading the newspaper and laughed out loud at a cartoon which contained very subtle humor. How lovely. And evidence of the benefit he had experienced from the music.

Jul 28, 2010

Harp music

"Harp music in particular offers amazing physical, emotional and spiritual healing benefits which have been scientifically proven through a number of studies," Karin Gunderson.

We went to a concert of harpists last night. One of the presenters has provided years of ministry in hospice settings by playing her harp. She told stories of the healing benefits from harp music; said the music from harps actually enters the cells of the body. She said harp music is a great way to calm a person with dementia, and I offer that as a suggestion to you. Her music was Christian based, and I am sure there are others which are secular. If interested in purchasing any of her music, the website is www.heavenlyharp.org

Jul 27, 2010


I accidentally discovered the above website which looks good. The National Association of Home Builders and AARP have developed a designation and certification process called Aging in Place which uses universal design concepts to modify homes so that people who are aging and/or disabled can stay in their homes. The site offers more than construction tips; however, it also had information on a cell phone design and plan designed for an elder. It had lists of resources. It might be a good site to consult if you need or want to make modifications for the person for whom you care.

Jul 25, 2010

The tasks of a caregiver

Ever given much thought to what it entails for you to be a caregiver? Gail Sheehy details the job in a passage in her book, Passages in Caregiving, devising it to look like a help wanted ad.

"Help wanted: Untrained family member or friend to act as advocate, researcher, care manager, and emotional support for a parent or spouse, sibling or friend, who has been diagnosed with a serious illness or chronic disability. Duties: Make medical decisions, negotiate with insurance companies or Medicare; pay bills, legal work; personal care and entertainment in hospital or rehab. Long-term care: Medication management, showering, toileting, lifting, transporting, etc. Hours: On demand. Salary and benefits: 0"

Sobering the task before us.


"There is a song at the center of my being which everyone hears," Ernest Holmes.

I was talking with a dear friend, and she said how similar are the challenges of living with dementia, living with addictions, or living with a terminal illness. I agree. The challenges and the suggestions for help and ease of the person providing care are very, very similar. My intention with this blog is to provide reliable, helpful and supportive material whichever is the situation with which you live. Knowing how similar the living situations are, perhaps we can gain insight from those dealing with something a bit different from our own situation. It is so important to live your situation the way you want to and choose to. And it is important to include fun. This weekend we have gone to an art exhibit, out to eat with friends and to a summer theater production. Including fun helps both the person giving and the person receiving care. What fun do you have planned?

Jul 24, 2010


"None of us are here by accident or to suffer," Chad Cameron.

Seems the purpose of suffering has been a perennial question for human kind. There have been some thoughts that suffering was part of a truly good person's life, and/or the way to become a good person. Other thinking is that we don't have to suffer. So, if that were true, what do we do about the signs of suffering around us? Perhaps the suffering of the one for whom we provide care? It does seem if one but looks around that there is suffering in the world. Could it be true that suffering is caused not by the event or circumstance, but by one's attitude toward it? I can stretch to that possibility sometimes, but not when considering horrific acts of violence. It seems that suffering, at the very least, is fertilizer for personal growth.

Jul 23, 2010

Wisdom sayings

"Good grief! I think I am losing control of the world," Charlie Brown.

I love the wisdom of Charles Shulz. He seemed to have such good insight into the psychology of humans. The above quote is good for us to smile with, as there is much in living with dementia that is "out of our control." No matter how well organized we strive to be, things will be misplaced; miscommunication will occur; mishaps will happen. Knowing we are not ultimately in control can be a helpful thing.

Jul 22, 2010

Doing what we can

"When your tasks seem a little heavy and overwhelming, remember to do one thing at a time quietly, and leave the rest because the rest is not your job. What you cannot get through you hand back to God and He will work it out for you," White Eagle.

It is good for me to remember this with the many, many tasks of caregiving.

Jul 21, 2010


"If we could stand aside and let this One Perfect Life flow thought us, we could not help healing people!", Dr. Ernest Holmes.

hmmmm. Not sure how many of us will become or want to become metaphysical healers, but the message is important nevertheless. We do make a difference in our environments. We either are uplifting for others, or we bring others down. I don't think we can be entirely neutral, so which do we want to be? It is simply a matter of choice. Do we want to be positive influences in our environments or not? Do we emit feelings of good will for all or our our feelings less than good will?

Jul 20, 2010

Learning from experience

"In ordinary life, creativity means making something for the soul out of every experience," Thomas Moore.

I believe that is true. It has seemed to me for a long time that the experiences of life either make a person better or bitter. There is nothing I have experienced that did not have a lot of value for my personal growth. Living with dementia is another one of those experiences. How has it changed you?

Jul 19, 2010

Making lemonade of lemons

"Barn's burnt down. Now I can see the moon." Masahide.

What a delightful way to say that out of every misery or disaster, good can be found. Dementia is a type of "barn burnt down". In the tragedies in my life it seems that one of the most grieved aspects is the death of the dream of whatever was. In living with dementia there is the death of the dream of the relationship we once had or that we hoped to have. I know of people who thought dementia brought out a better, more gentle person. I think that is somewhat rare, but goodness does exist if we but look for it. In our case, we don't work so hard any more. We allow ourselves more relaxation, more fun. That seems oddly paradoxical because in many respects my work load has grown exponentially as I have had to take over more and more of the responsibilities of life. Still, it is true that we have shifted our views of over working. What has been the silver lining(s) in your disaster of dementia?

Jul 18, 2010

Preventing falls

"I remember who I am," matriarchal character in Moonstruck.

Recent British research (Energy Times July/August 2010) indicates that older people are less likely to fall if they participate in physical therapy. I have implemented physical therapy for Dwane for mobility and balance. It has been good, if only for his becoming more aware of the difficulty he has in balance. Then, of course, they give him tips and exercises to help with his balance. It is also a support system for him that does not have to involve me. If your doctor orders the physical therapy, Medicare pays for it, or at least part of it.

Jul 17, 2010


"Awareness is insufficient if it doesn't translate into better behavior in the world," Tony Schwartz.

We are all aware of those people who feel strongly about a behavior, but they themselves do not reach that standard of behavior. A classic example is the person from the pulpit who rants about molesting children, but is doing so him/herself. As a therapist it is interesting to observe the very large gap there is sometimes between what one says and what one does. And, often, the person who rants the most about a behavior is the very one who misses the mark in displaying the behavior they desire. Only when a person has integrated their words into their behavior are they a maturing individual. Because I care if I am congruent in my words and my deeds, I am watchful of my behavior as indicator. It is an easy practice.

Jul 15, 2010

Lemon balm?

Because I will be gone tomorrow, I am posting this the evening before. Wouldn't it be wonderful if a household herb would prove to be helpful to people with dementia?

"In a small study published in Neuropsycholopharmacology, 20 healthy young adults reported increased memory and improved mood after ingesting lemon balm," AARP, July/August 2010.

The article goes on to say "another study found similar results among Alzheimer's patients."

This might be worth a visit to Neuropsycholopharmacology to see how one utilizes the lemon balm and what the study says about the use of it with dementia.

The power of 1 person

"All it took was one person (a man who saw a spark in him, who encouraged him) for the man to change his life," Katherine Saux.

It is well documented in the research of school psychologists that it only takes 1 person to take an interest in a child; and thus, to enable that child to meet his/her potential. It seems it can be true for adults too. It may help us to remember who were those people who made a positive difference in the direction of our lives; and to whom can we be that person? Surely we are making a difference in the life of the person for whom we are giving care. It seems to be true that we are each making a difference in life: is it a positive difference or a negative difference?

Jul 13, 2010

More on stages of dementia

Today's blog is copied from Mayo Clinic's Housecall newsletter, which can be accessed at their website: www.mayoclinic.com

The stages for Alzheimer's include:
Early Stage and Related Behaviors:
■Memory loss for recent events. Individuals may have an especially hard time remembering newly learned information and repeatedly ask the same question.
■Difficulty with problem solving, complex tasks and sound judgments. Planning a family event or balancing a checkbook may become overwhelming. Many people experience lapses in judgment, such as when making financial decisions.
■Changes in personality. People may become subdued or withdrawn — especially in socially challenging situations — or show uncharacteristic irritability or anger. Decreased attention span and reduced motivation to complete tasks also are common.
■Difficulty organizing and expressing thoughts. Finding the right words to describe objects or clearly express ideas becomes increasingly challenging.
■Getting lost or misplacing belongings. Individuals have increasing trouble finding their way around, even in familiar places. It's also common to lose or misplace things, including valuable items.

People with moderate Alzheimer's disease may:

■Show increasingly poor judgment and deepening confusion. Individuals lose track of where they are, the day of the week or the season. They often lose the ability to recognize their own belongings and may inadvertently take things that don't belong to them.

They may confuse family members or close friends with one another, or mistake strangers for family. They often wander, possibly in search of surroundings that feel more familiar and "right." These difficulties make it unsafe to leave those in the moderate Alzheimer's stage on their own.

■Experience even greater memory loss. People may forget details of their personal history, such as their address or phone number, or where they attended school. They repeat favorite stories or make up stories to fill gaps in memory.
■Need help with some daily activities. Assistance may be required with choosing proper clothing for the occasion or the weather and with bathing, grooming, using the bathroom and other self-care. Some individuals occasionally lose control of their urine or bowel movements.
■Undergo significant changes in personality and behavior. It's not unusual for people with moderate Alzheimer's to develop unfounded suspicions — for example, to become convinced that friends, family or professional caregivers are stealing from them, or that a spouse is having an affair. Others may see or hear things that aren't really there. Individuals often grow restless or agitated, especially late in the day. People may have outbursts of accusing, threatening or cursing. Others may bite, kick, scream or attempt inappropriate sexual activity.

In severe Alzheimer's, people generally:

■Lose the ability to communicate coherently. An individual can no longer converse or speak coherently, although he or she may occasionally say words or phrases.
■Require daily assistance with personal care. This includes total assistance with eating, dressing, using the bathroom and all other daily self-care tasks.
■Experience a decline in physical abilities. A person may become unable to walk without assistance, then unable to sit or hold up his or her head without support. Muscles may become rigid and reflexes abnormal. Eventually, a person loses the ability to swallow and to control bladder and bowel functions.


"It is my desire that only good shall go from me, therefore I have the right to expect that only good shall return to me," Ernest Holmes.

Wouldn't it be a wonderful life if the above were true? In living with dementia, it is sometimes hard to focus on only the good. With the swings in lucidity, it takes a great deal of patience and love to remain seeing the good, but it is excellent practice. What a difference life is if one sees the roses, even if one is also aware of the thorns. In talking with someone recently, the person cited how many times airplane travel goes awry. The truth probably is (at least for me): that once in awhile airplane travel goes awry, but more often, airplane travel goes very smoothly and on schedule. It is a good practice for me to see the evidence of what is going well.

Jul 12, 2010

Great thinkers

"A grateful mind is a great mind, which eventually attracts to itself great things," Plato.

Amazing how the thinking of what we as a culture acknowledge to be great minds resonates with current "modern" thinking. The above quote is very similar to the "Law of Attraction" spiritual thinking currently amidst us. Many spiritual teachers speak of the importance and power of being grateful. So, of what can we be grateful?

We went to a nearby city yesterday, had lunch in a fun spot, bought myself some needed art supplies, and Dwane some personal care products. We went because we needed to pick up some ordered fruit. A church in the area brings tree-ripened fruit into the area. It is a win/win as we live where this fruit is not grown, and the church uses the money to fund their parochial school. This morning I am so grateful for the beauty and serenity of where we live. Next: a bite of breakfast and a run amidst the beauty of nature. I am so grateful I have the health to run.

Jul 11, 2010


"Ambition does not stop when we acquire what we first desire," Julia Alvarez.

Reading, Saving the World, by Julia Alvarez for a book club I am attend. I like her writing. It seems, like Shakespeare, to combine beautiful language with insight into human nature. The above quote reminds of me some current spiritual practices which suggest that as humans we expand as we appreciate what we have while wanting even better. There seems nothing wrong with wanting things to be better, as long as we appreciate what we have now. Last night we went to a play, very funny. It was good to see Dwane laugh and laugh. Laughter is so good for the body, mind and spirit.

Jul 10, 2010


The best resources I have found for good, reliable information on Dementia with Lewy Bodies, sometimes called Lewy Bodies Dementia, is the above website (www.lbda.org) and Mayo Clinic website (www.mayoclinic.com/health/lewy-body-dementia. The www.lbda.org is the website of the Lewy Bodies Dementia Association. It is updated every two months, and it contains accurate and helpful information, as does the Mayo Clinic website. Both also offer tips for caregivers.

Jul 9, 2010

Stages of Alzheimer's

"I never dreamed that I was to spend the next seventeen years of my life as a caregiver," Gail Sheehy.

Reading Gail Sheehy's new book, Passages in Caregiving. it is interesting to me that when she lists medical conditions and resources, she does not include Dementia with Lewy Bodies. Second in number of incidence to Alzheimer's Disease, and yet so little known among the general public. Still her book has some good information. She lists the stages of Alzheimer's, which are probably similar to Dementia with Lewy Bodies:
1. Normality
2. Subjective cognitive impairment (beginning of forgetting and misplacing which she says begins about fifteen years before cognitive impairment)
3. Mile cognitive impairment: seven years before obvious dementia, people have trouble with complex tasks and tend to withdraw
4. Mild dementia: difficulties with complex activities lasting about 2 years
5. Moderate dementia: people lack ability to pick out right clothes for the season, may become angry and suspicious
6. Moderately severe dementia: First clue: People began having trouble putting on their clothes properly, showering, urinary incontinence, speech difficulties
7. Final stage: Have lost ability for self care in reverse developmental order, lose ability to walk, can last seven years or more

There are some similarities between Alzheimer's and Dementia with Lewy Bodies, and this list may be somewhat helpful to caregivers in observing the progress of this terminal illness.

Jul 8, 2010

Being true to self

"Be yourself today regardless of what happened yesterday," Ernest Holmes.

It surprises me in my own life and in my psychological work how easily we are led away from who we truly are. Life seems to present distractions that can take us from our true path and our true selves. I said to someone this morning that it seems a guideline for knowing if we are on our true path is the absence of a lot of obstacles. Of course, this takes some discerning; but it seems to me that if everything is going very hard with lots of controversy, then perhaps I want to review where I am headed. When I am following the path that unfolds my own potential, there is more ease. This is good for me to remember in living with dementia. Regardless of how much I lost my way yesterday in following my own unique path (and this really doesn't matter the setting: it is how I "show up" in the world; my intentions, thoughts, actions), today I choose to return to being myself truly.

Jul 7, 2010

Life circumstances

"I'm very brave, generally, only today I happen to have a headache," Tweedledum.

I love the story of Alice in Wonderland. In college one of my professors said the story was a representation of the inner journey of the author, Lewis Carroll, which caused me to like the story even more. Whenever I have been in a bizarre situation, I consider that I am at the "Mad Hatter's Tea Party". Living with dementia puts one in some bizarre situations. We have kept our respective toothbrushes in the same place for years, but recently when I went to use mine I found it wet. Yep. I'm pretty sure that nowadays any toothbrush is as good as another. Being a bit squeamish, I have found a new place for my toothbrush.

Jul 6, 2010


"What is grace?" I asked God. And he said, "All that happens," St. John of the Cross.

Gracious comes from the Latin word gratia, meaning grace. Webster gives the meaning of grace as "seemingly effortless beauty or charm of movement or form, a quality pleasing for its charm or refinement, good will" So, "all that happens -- is grace", and grace is "good will". To live with dementia graciously, then, is to live with good will toward ourselves and the one to whom we give care, it is to live with the characteristics of elegance and good will.

It helps me to know what I am aiming for.

Jul 5, 2010


Your pain is the breaking of the shell that encloses your understanding.
Kahlil Gibran

What amazing mastery of words did Kahlil Gibran have. The above quote has always intrigued me. with just 12 words Gibran puts into wisdom a question humans seem to ask in adversity: "Why?" or "Why me?" Life is a learning process and we can learn from every situation, but pain especially captures our attention. In living with dementia there is much opportunity to allow the pain to break the shell that encloses our understanding.

Jul 4, 2010


A young monk asked the master, "How can I ever get liberated?" The master replied, "Who has ever put you in bondage?" Jack Kornfield.

We have the good fortune of experiencing many forms of freedom in many parts of the world. The types of bondage that can exist most prevalently are the self-imposed bondages. Addictions: whether to a substance or to negative thinking are definitely forms of bondage. Dr. Ernest Holmes wrote "The Divine Plan is one of Freedom; bondage is not God-ordained. Freedom is the birthright of every living soul." The outer circumstances do not dictate how free we are. We only have to look to Viktor Frankl to demonstrate how one who is incarcerated in a concentration camp could find internal freedom. Today let's declare our own freedom from any limiting thoughts or habits.

Jul 3, 2010

Peaceful living

"Peace be both to thee, and peace be to thine house, and peace be unto all that thou hast," Samuel 25:6

Living in peace and harmony is of paramount importance to me. Today is our 17th wedding anniversary, and I can say that most of our time together, even nowadays, is filled with peace and camaraderie and good will. So important for the health of our bodies and souls: to live in peace, with peaceful thoughts, and peaceful words. Life is good.

Jul 2, 2010


Perhaps nothing denotes independence for us adults as the ability to drive ourselves somewhere and/or handle public transportation. The recent Mayo Alzheimer's newsletter addresses this, and says accurately that opinions abound on whether someone with dementia can drive. I saw a recent news documentary that stated that new evidence shows the people with early dementia may very well be able to drive capably. It was and continues to be a big question for us, so I had Dwane evaluated by an OT (occupational therapist) who specializes in determining driving safety. I highly recommend having this type of evaluation. It was a couple hundred dollars out of pocket, but it was well worth the information it gave us.

The Mayo newsletter states:
"If your loved one continues to drive, pay attention to warning signs of unsafe driving, such as:

■Difficulty navigating to familiar places, changing lanes or making turns
■Confusing the brake and gas pedals
■Failing to observe traffic signals
■Making slow or poor decisions
■Hitting the curb while driving
■Driving at an inappropriate speed
■Becoming angry or confused while driving"

The Mayo newsletter also suggests that a good guideline is whether or not you feel safe riding in the car with the person with dementia, or whether you would feel safe having a grandchild ride with the person. Good guidelines.

Jul 1, 2010

Contrast in life

"It is easy to see God in the beauty of a radiant rose, but God is also in the thorns that prick the finger and in the dirt that nurtures the roots of the rosebush," Katherine Saux.

Whether or not one believes in God, I think the above quote reflects wisdom about life. Life does contain both the "good" and the "bad". I believe it was Buddha who said it is our interpretation of events that causes us suffering. Probably true. But it seems impossible to think of dementia ravishing the brain and body as "good". Still, there are good aspects. Dwane and I both have more appreciation for our life, more tender moments, we take more time to "smell the roses". We hear from the PT (physical therapist) that Dwane's weakness in his legs is neurological, and we can just take that in as information; not an indictment.

We are off today for lunch to celebrate our years of being together. We will have a lovely time.