Sep 30, 2010


"I turn the searchlight of truth upon every apparent evil in my experience," Ernest Holmes.

Dr. Joan Borysenko's daily meditation book, Pocketful of Miracles, says this time of year is under the guidance of the Archangel Rafael and is a time to heal. She says that we can take the circumstances in our lives which are difficult and use them to develop more of our human potential. I agree. Within and without, we can take the searchlight of truth and shine it upon any and every apparent evil, and we can transform ourselves. Living with and providing care for someone with a terminal illness is good practice for these activities.

Sep 29, 2010

REM sleep disorder

"Sleep disorders, particularly the tendency to act out dreams known as rapid eye movement (REM) sleep behavior disorder, are common in Lewy Bodies Dementia." Mayo Clinic literature.

Clonazepam. That is the new medication the sleep clinic at Mayo has prescribed for Dwane to try to stop the worsening REM sleep disturbances. At first we were taking Melatonin, but that began to not prevent the episodes. We will see how this medication works.

Sep 28, 2010

Retain the good

"Do not quench the Spirit. Test everything; retain what is good," 1 Thes 5:19/ 21

What a wonderful attitude to have about everything. The weather has been exquisite here. Yesterday I had a 3 mile run, checked my garden, had an oil painting lesson, cleaned house, and fixed a wonderful oven dinner with mostly garden-fresh vegetables. The above Bible quote seems to tell us we do not have to squelch anything in life; but just look for and retain what is good. That is good practice, whether it is external goodness or our own thoughts and attitudes. Today I will look for and retain all that is good.

Sep 27, 2010

Thinking creates one's life

"If you want to know what you have been thinking, look at your life," Barbara Leger.

More and more I see the truth in the above statement. Many years ago a beautiful therapist told me that there was thought that cancer was caused by a person being unwilling to change. Perhaps many diseases have their root cause in our thinking, Louise Hay certainly thought so. It probably does us no good to consider whether dementia is caused by one's thought; but we, as caregivers, might benefit from considering our own thoughts and whether they support our health or not. There are so many tasks to do as caregivers that it is easy to become numbed out or overwhelmed with just getting them done. We must not allow that for ourselves. We must, in my opinion, stay focused on peace, harmony, joy, well-being (and whatever is top on your list. It is a gift for ourselves and the person for whom we provide care when we take care of our own mental health, the quality of our own thinking.

Sep 26, 2010

Body wisdom

Yesterday I attended a workshop called "Body Talk". It involves a series of light tapping in patterns on the body. The people presenting spoke of amazing healing effects from the process. I have no idea, except I do have high regard for the people who brought the workshop into the area. We will be trying the tapping techniques on Dwane, and see if we notice positive results. It seems similar to the Holy Tea -- it can't be harmful, and if what they said is correct, it can restore equilibrium and energy to the body. It is amazing the different resources that are out there, and it is interesting to sort through and see what might be genuinely helpful, and to share those helpful ones with others.

Sep 25, 2010

Cognitive improvement

"It is not the brains that matter most, but that which guides them—the character, the heart, generous qualities, progressive ideas," Fyodor Dostoyevsky (1821 - 1881) Russian novelist.

The medications that are prescribed for dementia are not purported to improve brain function; they are said to merely delay the decline. So, how do we explain Dwane's improved cognitive abilities two years after beginning medication? I think it is the combination of what we do. Good diet, Holy Tea, apple juice, prayer, serenity, intellectual stimulation and fun. I wonder if the Holy Tea (this is not an endorsement of that product -- just a wondering) is a factor. Our alternative healh practioner believes it is. For any interested, Holy Tea is a combination of plants made into a tea by Dr. Miller and can be found in a web search.

Sep 24, 2010

Our life impression

"We will be known forever by the tracks we leave," Unknown, Dakota.

How true. A friend once told me when I said that I was not attending a workshop, "but your energy will be missed." Our energy, the essence of who we are, is either a blessing for ourselves and others, or a diminishment. I don't think there is much of a neutral stance. We can choose whether we are a blessing unto the world and ourselves, or a diminishment. We can also choose whether to reflect back to someone the blessing they are or to reflect back some negative characteristic. This is something to remember in caregiving. We can reflect back to the care receiver the loving energy that lies at the interior of each of us; despite what their behavior might be. And that will make a difference.

Sep 23, 2010

Fall equinox

"Know the river has its destination," Peacemaker, Iroquois.

According to my calendar, today is the first day of fall, and it is very fallish weather here. The meteorologist said that last night was the full moon, and for the first time since 1963 one could see Jupiter near the moon in the night sky. It was too cloudy for us to see it last night; we will look for it tonight.

We are home and getting settled back in. I found myself impatient with Dwane yesterday -- too tired, too much to do with laundry, unpacking, etc; and his negativity was pushing some buttons for me. When impatience occurs for us in caregiving, I suggest we be gentle with ourselves. What we are doing is herculean. We would have to be super-humans to not have some negative emotions. What I do with negative emotions is notice that I am having them, and then recommit to my intention to do this with graciousness.

Sep 22, 2010


"He is the happiest, be he king or peasant, who finds peace in his home," Johann Wolfgang von Goethe.

We are home. In our eagerness to get home, I drove many miles yesterday. It is so good to reenter the peace of our home, the silence, the serenity, being in one's own bed. Lovely. The colors changed while we were gone. It is just beautiful.

Good news on last day from Mayo. Cognitive and memory testing supports my own observations: Dwane is functioning better cognitively than he was two years ago. Yea! It appears what we are doing is supporting his well being. Mayo also put him on some new medication for the REM sleep disorder. I am hopeful and interested to see if that helps.

Sep 21, 2010


"All dreams spin out from the same web," Hopi saying.

So much wisdom. I think we have seen over and over in history when an idea comes to one person, it is also available to anyone else. And others do pick up the same or similar idea. We are connected. That realization helps me to provide caregiving with compassion. If him; then us. I wonder what role illness plays. I remember a friend telling me of an alternative practitioner who said of illness; 'well, we must all die of something'. I happen to think that illness may be a way for the person to continue the evolution of their soul (and I am not necessarily talking of reincarnation); and/or the evolution of the soul of someone in their lives.

Mayo did not have much to say for Dwane. Not much hope given. They seem resigned to the progression of this terminal disease. And, what meaning does that prognosis have for us? I was not expecting a cure this time, but I was hopeful of new, more beneficial medications.

Sep 20, 2010

Mayo news

"...never engage in a fight you are sure to lose." Steig Larsson.

We have had our initial appointment with Mayo. The bad news is that there are as yet no effective medications to address the protein clumping in the brain, so Namenda and Aricept are still the best line of defense. The good news is that we see the sleep clinic tomorrow, and they do have some ideas for better handling the REM sleep disorder. So, this continues to be a fight that we appear to have no chance of winning.

Sep 19, 2010


Our time with grandson is complete. We watched him do very well in his race yesterday. What a conscientious and considerate young man.

Then we began our trip to Mayo. Dwane is complaining of stomach distress, which he often has -- before the dementia, and perhaps more so with all the medications. I am looking forward (with some trepidation?) to what Mayo has to say. Whatever they have to say, I do better with knowing what we are dealing with. And, so, onward.

Sep 17, 2010

Time well spent

It seems that it is always time well spent when one makes the space and gives energy to connecting with people one loves. It has been a good week, and we are moving on today.

The past week has also shown me that Dwane continues to have REM sleep disorder issues. He continues to act out his dreams, flailing and hitting at times. It provides good information to discuss with Mayo. Otherwise, things seem the same. Lucidity fluctuating. More trouble with mobility.

Sep 16, 2010

Nature walks

"A crane standing amidst a flock of chickens," Chinese proverb.

When I run in the mornings here, I see cranes. Beautiful, red-headed cranes. First I would see two, and now I see four. Magnificent. They stand out in the animal/bird world. I recently was talking to someone about the perception of standing out. Her experience was that it was easier to stand out (Be expected to do and be your best) in some places versus others. I think that is true. Some environments are more conducive to allowing and encouraging people to be outside the mold. That is what some of us who are providing care to someone with dementia are doing with the task of caregiving. Standing out by standing in our own truth of how we want to do this task. My choice is with honor, respect and full cognizance. What is your choice?

The time with our grandson is coming to a close and what a joy it has been. He is a delightful, honorable young man. It has been a very good week.

Sep 15, 2010

What we believe

"What the people believe is true," Anishinabe saying.

This saying seems to have deep truth in it. When people believe that other people are basically good, that is usually what they experience. And, conversely, when they believe people are bad, that may be what they experience. Our expectations and deep beliefs seem to manifest in our lives. I have noticed that when I expect things to go very well, they usually do. When I am anxious or distracted, things can go awry. I also find it helpful to set intentions. I set an intention yesterday of really connecting with my grandson, and last night was a delight with him. Also, when I expect things to go well with Dwane, they usually do. Our beliefs and our intentions shape the quality of our lives, and perhaps also, the content.

Sep 14, 2010

Fun Day

Shopping. Many people, seems especially women, love to shop. I am not much of a shopper myself, but yesterday we went to a luxury outlet mall. Fun! We got Dwane a very nice winter coat and a couple fun things for me. The weather has been beautiful, and we have decided to stay long enough to see our grandson run in a race this weekend.

Then on to Mayo. I intend to ask where they think we are with this disease process, and I want to know if there are any new treatments, especially in light of the research released this summer about protein clumps being the problem -- instead of the plaque. There is something I am going to check on regarding my own health too. I intend to stay healthy in this process.

A very good week. Some fun with Dwane and grandson, and some good connections with grandson. It is so good to get a glimpse into his daily life.

Experiencing the metropolitan

While we choose to live intimate with nature, we also like to experience the city. Yesterday we took advantage of some shopping that we cannot do in our rural setting. The traffic and congestion is an interesting experience. It sometimes amazes me that so many people can cohabitate in a relatively small area. There is so much energy in a city. All the bustling, rushing; yet the people are kind and courteous.

Dwane seems okay after his fall, and he is doing well, being congenial, interacting.

Sep 12, 2010


"Those who have enough give, and those who don't have enough take," Katrina Kittle.

We drove into the metro center, ate at an art museum cafe, and walked around in the beautiful sunshine. Dwane fell off the edge of a sidewalk. He almost fell a couple days ago, stumbling over an uneven sidewalk. Even though I am very vigilant, it appears I need to be more so. He is unhurt, but it makes me more aware that in unfamiliar surroundings, he is much more susceptible to accidents - even when care is taken. So, fortunately, I have enough attention and cognitive ability to provide for us both. We will go more slowly. I will be more watchful for pitfalls.


"The sun, the darkness, the winds are all listening to what we have to say," Geronimo, Apache Chief.

If we remembered that the above is true, in that what we say affects ourselves and others, we might be more careful about what we say. Yesterday we took our grandson to a movie. It was rated PG, but it has been a long time since I saw a movie filtered through the lens of what is appropriate for a young person to see. A lot of sexual language, violence, harsh language. When I commented on it afterward, he seemed unfazed. It is important for me to realize, since it was PG, that this is the norm for our society now. Recently I saw a movie which I had liked from my own childhood era, and while there was no blatant sex, there was drunkenness and a lot of smoking.

It is important that we, and the media, be aware of the message we are sending, what we are condoning. Someone may be listening.

Sep 11, 2010

Treasured time

"Communication is to relationships what breathing is to life," Virginia Satir.

What a glorious time we are having with our grandson. I had the most precious gift of being there when he was born, and we have always had a special connection. It is so good to reconnect with him. We planned to do something fun today, but the weather is not cooperating. Dwane is of good cheer and enjoying the "vacation" time. He and our grandson discuss his history class. It is good to see someone eliciting Dwane's knowledge base.

Sep 10, 2010

Road trip

We have arrived to stay with grandson as his parents travel to international conference. It is good to be acquainted with this area, and to catch a glimpse into their lives. The travel was fine, and all will be well here. It will be fun to scout the area for some fun things to do. Dwane is loving the trip and doing well. We will go out and become familiar with the basic services today.

Sep 7, 2010

Tips for Physician's Visits

This information is taken from a Mayo Clinic newsletter:
1. Schedule wisely
Plan appointments for your loved one's best time of day and, if possible, when the doctor's office is least crowded. Bring snacks and water, and an activity your loved one enjoys.

2. Be prepared
Make a list of issues you'd like to address with the doctor, such as concerns about medication side effects or aggressive behavior. Put your primary three concerns at the top of the list so that you're sure to cover what's most important to you. Also take note of your loved one's medications, even over-the-counter medications and supplements. You can either make a list of everything your loved one takes or bring the labeled containers in a bag.

3. Be specific
Be ready to answer questions about your loved one's symptoms and behavior. Have you noticed any changes in your loved one's mood? Is your loved one able to eat regular meals? Does your loved one seem to be uncomfortable in any way? Has your loved one shown any aggressive behavior? As the disease progresses, your insight may be the critical factor in determining what's best for your loved one.
4. Take notes
Bring a note pad and pen so that you can jot down the main points of the doctor's explanation. You might also record the conversation on your cell phone or another device so that you can listen to it again later. Better yet, bring a friend or another family member and ask him or her to take notes or to stay with your loved one while you take notes. If you don't understand something the doctor tells you, ask for clarification.

Also think about seating arrangement in the doctor's office. If your loved one sits next to the doctor and you sit beyond, the doctor can address questions directly to your loved one — and you can nod your head to confirm or refute your loved one's responses.

5. Consider the future
Ask the doctor to discuss what to expect in the next year or two. You might ask about advance directives, long term care or nursing home placement. You might also discuss hospice or palliative care. Knowing what to expect can help you prepare.

6. Ask for referrals or recommendations
If you need help, ask. The doctor can refer you to various community resources, such as meal services, senior centers, respite care and support groups.

7. Deal promptly with conflict
If something annoys you about a particular appointment or if a misunderstanding arises, discuss it with the doctor right away. Work as a team to resolve the problem, rather than rushing to switch doctors. A change could be confusing to your loved one and detrimental to his or her care in the long run.

Respectful living

"When we show our respect for other living things, they respond with respect for us," Arapaho saying.

This seems to be true whether one is talking about nature, one's garden, relationships, oneself, work environments. It has certainly been true for me in caregiving. The more respectful I make our environment, the more Dwane responds positively. Harmony, peace, respect, ease, fun. These are all things worth making a priority in one's living situation; and the dividends pay off. People treat us better, things go more smoothly, there is more harmony. It is worth considering how we want to be treated, and then treat all other people and situations as we want to be treated.

We are off on a road trip. Any time away from the structure and predictability of our home is harder. Dwane responds to the consistency here, and has more anxiety when we travel. My intention for this trip is for fun, safety, relaxation, ease.

Sep 6, 2010

Not plaque??

"Scientists once thought plaques were bad. New studies show they may protect the brain," AARP/Bulletin, September 2010.

A whole new way of thinking what may cause Alzheimer's. It has been presumed for some time that the brain is destroyed by sticky plaque; now the thinking is that the plaque may be trying to protect the brain from clumps of protein. Why do we care? Because that will change the direction of research and the medications. Right now the medications are designed to target the plaque; but if the plaque is helpful and the protein the problem, medications will take a whole new approach. Something for all of us dealing with dementia to watch.

Fully here

"You can only get there if you are fully here," Jon Kabat-Zinn.

I am re-reading, Wherever You Go There You Are, by above author. A book full of great tips for being mindful, not being lost in our thoughts of fear and lack, and being present. Caregiving is an opportunity to practice mindfulness. Really be present in each moment. It might be easier with caregiving, than being out in the world working. At least there is no excuse to be "lost in our thoughts". What can we notice today during the time we spend providing care to the care receiver?

Sep 5, 2010

Review of my year

"Love settles within the Circle, embracing it and thereby lasting forever, turning within itself," Luther Standing Bear.

So, how has the last year been for me as caregiver? It was a godsend that I found us another setting in which to live for the winter months, as the snow removal was just too much for Dwane and me in our current situation. The deep grieving I did in June was beneficial. I came to the realization that we are now 2 years post diagnosis, and things seem about the same as two years ago. So, this is going to be a longer project of caregiving than I had originally planned for (because Mayo literature said death from diagnosis with Dementia with Lewy Bodies is usually 2-3 years.) The good that came from that grieving is that I reclaimed some of my life that I had set aside to devote to caregiving. I started doing some professional work again. I also scheduled us again to go to Mayo -- to see if they have any news tricks in their bag to assist Dwane's health. We had some wonderful trips, fulfilling some of Dwane's wishes and mine. A good year, well spent.

Sep 4, 2010

Year's review

"Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves," Chief Seattle, Chief of the Suquamish.

So, 365 days of writing this blog. Actually, it has been a bit over a year since it originated because of a few missed days with travel. So, what has the year brought us? Ups and downs, celebrations and sorrows, accomplishments and setbacks --- much like any year; except that this year we have been dealing with a terminal and progressive disease. Dwane seems about the same to me cognitively as he was one year ago, but with the characteristic fluctuations of lucidity common to Dementia with Lewy Bodies. Physically I see much decline, in spite of having gotten him into PT (physical therapy). That has helped, but his physicality seems to be diminishing and slowing. He is generally congenial, of which I am so grateful. That is a major difference; not so often the belligerence that was so present early on. I am glad that we completed one of his "bucket list" items this year; going to Sagamore, summer home of Theodore Roosevelt. The upcoming hunting trip will be another item. We focus on quality of life, ease, fun. In spite of it all, our life is very good.

Sep 3, 2010

Reflections of gratitude

"Our first teacher is our heart," Cheyenne saying.

Today is my 365th blog entry. I had originally set as a goal doing this blog for one year. During that year I have wondered at the helpfulness of it, especially when faced with some extended family opposition about it. My intention for it has always been to provide reliable information and support to help caregivers in any situation, with dementia in particular, and also to give myself some sense of purpose in the midst of this journey. I know from feedback from readers that many of you find this blog helpful and supportive, and that is my delight as it was also my goal. So, today, it is with gratitude that I have had this avenue of expression and the support of you, the readers. May we all be blessed with serenity and wisdom. I look forward to what the next year will bring. Medical breakthroughs for help with dementia?!?! Wouldn't that be lovely? World peace? Prosperity for all? What would be a good intention to hold for ourselves and the world for the next year? What does our heart tell us?

Sep 2, 2010

Dark periods

"In the middle of this road we call our life I found myself in a dark wood with no clear path through," Dante Alighieri.

Despite the support systems that we carefully craft, despite taking care of our physical/mental/spiritual health, despite our educating ourselves, we will encounter times of discouragement. Let us honor our feelings during these (and all) times. This too shall pass.

Sep 1, 2010

Healing of nature

"When people in nursing homes are given plants to care for, they live a year longer than the average expectation," Dr. Joan Borysenko.

One might wonder if it is the being with the plants or if it is having something alive dependent upon them which increases the lives of these persons. Perhaps both. We have plants in and out of the house, and choose to live in an area where we experience nature intimately. I think it is beneficial to us both. Perhaps having something one is responsible for keeping alive is good for people with dementia who seem to collapse into themselves. Their awareness seems to slowly restrict so that they are eventually only involved with their own sensations. Perhaps that is not true of all dementia, but it certainly true of some. Perhaps it is good to give them a focus outside themselves (such as a plant) that is dependent upon their attention. An interesting experiment.