Mar 30, 2010

Our travel

It has turned out easier than I have previously experienced to access wireless, so -- our trip. The first day we stopped by Dwane's university to see how they had displayed the several hundred books and journals he donated to them. His life's work, the professional materials that accompanied his history teaching career. They did a nice job acknowledging him, and we took his photo with his the collection.

Four states and two days later, our travel going well. I am grateful for the gps I bought Dwane for his birthday a few years ago. It is a godsend to help me navigate while driving. Today we stopped at a huge antique mall and a handcrafted furniture factory. Fun to look. Tomorrow we arrive where my son's professional transition celebration is occurring. Good weather, safe travels and lots to see.

Mar 24, 2010

Taking a break

"God gives His gifts where He finds the vessel empty enough to receive them," C. S. Lewis.

Part of my sense of purpose is writing this blog daily; it is part of my spiritual practice. I will be taking a break from writing it from now until mid April. We are taking a trip, and I have found it unpredictable to count on wireless access while traveling. We are going to celebrate with my son his professional transition, and then we are going on so that Dwane can see Sagamore, Theodore Roosevelt's summer White House -- something he has always wanted to do. While there, I have arranged for us to stay on the beach and to see a Broadway play. We are looking forward to the adventure.


"The next best thing to being wise oneself is to live in a circle of those who are," C.S. Lewis.

I have always appreciated Dwane's incredible and accurate knowledge of history. He has a very different type of wisdom from mine, and it is fun to ask him a question regarding historical facts and watch him unerringly come up with the information. In this disease process, that wealth of information is not lost. Lovely. I realize that each form of dementia manifests differently, and I think it is important to value what we can from this experience. It is also a way of honoring the person with dementia. What can he/she still contribute and feel valued by doing? Is it the history, the stories, the silent connection, the acquiescence? Finding value in our experiences is good for us and for the person to whom we provide care and support.

Mar 23, 2010


I have always been a discerning eater, and I am grateful that good nutrition is one of the really good foundations I gave my children. But, after watching the movie, Food, Inc, I am upping the bar. Friends and family have been recommending that I watch this movie, and last night we did. I have tried to buy organic and in season food for a long time, but in a rural area it has not always been easy. I was raised on a farm, and I was stunned to learn that now only one company produces seed and that company controls everything that farmers plant -- if they want a contract with that company.

The movie draws on Eric Schlosser's Fast Food Nation and Michael Pollan's The Omnivore's Dilemma. This is a documentary by director Robert Kenner, and it explores the food industry in America, its effect on our health, the environment and workers in the field of food industry. If you are concerned about what you eat, you may want to watch it.

In my psychological practice I have long wondered (as have others) why the dramatic rise in some disorders, such as autism. A group of us were also discussing the apparent rise in occurrence (this is a personal observation) of dementia. As a child and young adult, even with scores of aging relatives, I knew one person - a spouse of a distant cousin - who had dementia. Within the past decade I have known five persons with dementia within extended family. It seems plausible that environmental insults, to include what we eat, might be changing our health in an adverse way.

Mar 22, 2010


"In solitude we become aware that our worth is not the same as our usefulness," Henri Nouwen.

While being caregiver to someone who is dying with dementia is not what Nouwen was referring to when he said the above quotation, I believe it can apply. When we chose, or perhaps you believe you were forced into, caregiving someone with dementia, we also chose in many respects to be apart from the world. Professional lives are stopped, other volunteering is curtailed, socializing is limited. And in the case of many forms of dementia communication is limited, so that, too, can be an enforced solitude for the caregiver. So, perhaps it is helpful to think of our time as caregiving as a time of intentinal solitude. What is the best use of our time when we consider it in that way? The above quote gives me some ideas. For a long time I have equated my self worth with my productiveness, with what I achieved. In solitude I have an opportunity to see my worth as something much more.

Mar 20, 2010

Standing up for oneself

"Refuse to let yourself misunderstand or be misunderstood," Science of Mind.

Perhaps this has to do again with getting respite care for yourself, even if the person for whom you are providing care opposes it. My only intention is to provide the best quality of life for Dwane and for myself, and I will not let his misinterpretation affect my decisions. I think this is a safe guidelines, as long as I know my intentions are pure.

I also think that is serves me to be less inluenced by his reaction. To paraphrase a Buddist ideal of the Middle Way: Be neither polarized by attachment nor aversion. I resolve to be unaffected/unattached to Dwane's reactions to what I believe best serves us both.


""May the God of endurance and encouragement grant you to think in harmony with one another," Romans: 15:5

Harmony has always been very important to me. I dislike discord and try to create and reside in environments of harmony. An area of resistance in this journey with dementia is Dwane's significant resistance to any services which might give me respite. Because of his resistance (I call them temper tantrums), I have postponed getting someone to come in on a regular basis so that I can have a break. But no longer. I started nursing services yesterday, and I have set up respite care on a regular basis. Dwane wants to avoid living in a nursing home; then he needs to be cooperative with services which can help accomplish that.

My spiritual director really helped me with this. He suggested that I should not be so concerned about Dwane's resistance, as my resistance to Dwane's resistance. Subtle difference, but I get it. I will set up what I believe we need, and Dwane's response is his own business, not mine.

Mar 19, 2010


"If a fine idea of a singular insight was lying in wait for us, would we be ready for it?" Margaret Stortz.

While driving I listened to an NPR interview with Janna Levin, a theoretical physicist who describes herself as "besotted with mathematics". Delightful! During the interview she pondered whether anything is real of not, such as other people. It struck me that this conversation was coming up with a scientist, as it is also a conversation that comes up with some who study and write about spirituality (i.e. Gary Renard) and in dreamwork. If there could be a premise that perhaps everything is an illusion, what would be the purpose of someone with a disease? This is perhaps pretty "far out", but it might be an intriguing notion to think that those with whom we interact are here for some purpose of which we are a part. (Janna Levine is author of "A Madman Dreams of Turing Machines.")

Mar 18, 2010

How are we doing?

We are in a period of significantly less lucidity for Dwane. Lots of confusion, lots of difficulty communicating, gets angry easily. We went grocery shopping yesterday, and he experienced so much frustration trying to push the shopping cart in the busy store. It is easier for him to walk if he pushes the cart, so it is a conundrum. His inability to see other options is still surprising for me.

All the forms of dementia must have their worst aspects and those aspects that make it easier. For dementia with Lewy bodies, the extreme swings in lucidity are hard to handle. One does not know literally from moment to moment the capability of the person. I am grateful that I do not have to be concerned about him wandering (although he was lost on a cruise ship once), but to have him "with" me in one moment and gone the next is disconcerting.

Mar 17, 2010


"Life teaches us to accept good-byes as a part of saying hello to things that are newer," anonymous.

Part of living with dementia is grieving. I have heard some refer to living with someone with dementia as "the long good-bye". It is a continual good-bye to the way things used to be. Loss of cognitive functioning, loss of functioning as a companion, loss of independent functioning, loss of physical skills.

Yesterday we received notice that Dwane had written a check for which there is insufficient funds. I have switched him to an account with a modest balance because of his tendency to lose checkbooks, and he wrote a large check that I knew nothing about. Resolvable, but yet one more thing for me to handle.

Mar 16, 2010

DLB versus Alzheimer's

DLB (Dementia with Lewy bodies) is the second most common form of dementia following Alzheimer's. (This information comes from Mayo Clinic literature.) Men are more likely than women to be affected by DLB. Age of onset is usually between 50 and 70, but can range from 20 to 90.

Very distinct fluctuations in the person's attention and alertness distinguishes DLB from other forms of dementia. The person may be able to handle daily activities fairly well and then become confused for minutes, hours or days. The person can go from being able to carry on a conversation to being drowsy, inattentive and unable to speak.

Beginning stages of DLB demonstrate inattention, indecisiveness, impaired judgment and mild forgetfulness. The parkinsonism usually appears later with slow movement, rigid arms and legs and shuffling walk.

As DLB progresses, many symptoms become more severe with fewer periods of clarity and difficulty walking.

DLB differs from Alzheimer's in that it usually does not demonstrate the significant forgetfulness associated with Alzheimer's -- that of people not knowing who they or other people are.

Mar 15, 2010

What is dementia with Lewy bodies?

It seems time to revisit what dementia with Lewy bodies (DLB) is, as I am again hearing people say to me they have never heard of it. This information is from Mayo Clinic. The name of this disease comes from the abnormal protein deposits, called Lewy bodies after the physician who identified them, found in deteriorating nerve cells. These Lewy bodies are bound in both Parkinson's disease and dementia with Lewy Body. In DLB the areas of the brain that are affected involve emotion, behavior and cognition. Thus, people who have DLB have some symptoms like Parkinson's disease and some symptoms like Alzheimer's disease.

DLB has four defining symptoms:
1. dementia
2. fluctuating attention and alertness
3. visual hallucinations
4. Parkinsonism - muscle rigidity and slowness, drooling

Other symptoms include:
Anxiety, sleep disorders, delusions, nonvisual hallucinations, lightheadedness upon standing, unexplained loss of consciousness, depression

Mar 13, 2010


"I believe that God does not want us to suffer. However, if we separate ourselves from the truth of who we are, we feel adrift," Henri Nowen.

One of the aspects which interests me about dementia is how self absorbed the persons with dementia become. This has struck me when I am in unable to take care of myself (accident on my bike or recent medical procedure in which I was to be monitored afterward). Dwane is on many levels oblivious to me and to the exterior world. Is it possible that this folding in on oneself is the "returning home" to which Henri Nowen refers? It seems it must serve some purpose, and it does seem to shield the person with dementia from suffering. I guess it would be comforting for me to think that there is a purpose.


"We cannot judge others harshly without receiving back into our own consciousness and experience the very things we claim for others. If we all were to follow this rule we should become kinder, if only for the purpose of self -preservation and personal happiness," Ernest Holmes.

Usually when we think of the commonly-accepted rule of behavior, judge not lest ye be judged, we think of abstaining from negative thoughts such as jealously, envy, hatred, etc. But what if the positive thoughts we think about others is as important as avoiding the negative thoughts? What if the more we want others to have the best of everything - love, possessions, peace - the more likely we are to experience it too? There are a number of current thinkers who believe that what affects one affects us all.

Mar 12, 2010

Fun day

Yesterday was Dwane's birthday, and we spent it doing what he wanted: going to the library, going to the bookstore. I fixed the dinner of his choice and the dessert he wanted -- a lemon-filled cake that his grandmother used to make. Delicious. A good day.

Mar 11, 2010

Living well

"It's not so hard (to live long and well), and it's not all genes. Here's what we can do today.." Dr. Oz.

To be physically healthy is very important for us who are providing care for someone with any terminal illness, such as dementia. Dr. Oz suggests 5 things to do to live well and to live longer:
1. Daily rigorous exercise. At least 3 30-minute workouts in which you break sweat. Also a half hour per week of weightlifting and half hour of stretching.
2. Get 15 minutes of sun every day or take 1000 IU vitamin D daily and 1000 mg calcium with 500 mg of magnesium to avoid constipation.
3. Choose foods that look the same when you eat them as when they come out of the ground. This, of course, implies whole foods and lots of vegetables and fruits.
4. Sleep more than 7 hours a night.
5. Find purpose in your life.

Mar 10, 2010


"My wisdom, my love, and my creativity are some of the ways in which I bring my elegance into life," Margaret Stortz.

Healthy self-regard is deemed by some in the mental health field to be of primary importance. The premise is that we must respect ourselves before we can respect others. That peace starts in our our hearts before being extended to others. The above quote is lovely and might be a good affirmation for any of us. As we receive less affirmation from the person with dementia because of the aspect of self absorption that seems inherent in dementia, perhaps we need to find other ways to affirm our own goodness and beauty.

Mar 9, 2010

Who is God?

"God is love, truth, beauty," Plato.

For as long as we have had the ability to reason, humans seem to strive to make sense of their world, to find meaning and purpose, and to wonder how this all began. Over the years the idea of a supreme being has changed, as humans have evolved. But, this lovely definition from Plato sums the essences of what a divine being might be. Does it fit with your idea of God? One might wonder why I am considering who is God in a blog about dementia, and I would say: Why not? It is so important to me to find the greater meanings of life, the learnings from the experiences, the beauty of it all. One of the ways I find comfort in living with dementia is to consider what spiritual learnings are there here for me. While this process is really for and about Dwane, there is an aspect: how I respond to it -- that is a component of my greater development as a human.

Mar 8, 2010

Thoughts of happiness

"Erase the thoughts of yesterday that would rob us of today's happiness," Ernest Holmes.

Ernest Holmes goes on to say that we must stop any thoughts of worry, anxiety, indecision, discouragement, and depression in order to be happy. For me it is not just the thoughts of yesterday that I must guard against, it is also the fears of tomorrow. Usually I do a good job of not being anxious, but I awoke at 3:00 a.m. with worries about money. Very unusual for me, and I noticed that that early worry flavored the rest of my day; even though I tried to shake it off. Stopping and transforming negative thoughts as they emerge is a critical component of happiness.

Mar 6, 2010


"Whatever one believes, it's been clearly established that a belief system that adds spiritual meaning to life helps people thrive. Numerous studies indicate that people with positive religious beliefs are happier than those who discount religion," Dan Baker.

Dr. Baker is correct. Many research studies have concluded that people are happier when they have a source of meaning and purpose in their lives, when they are living their lives in alignment with their values, and when they have a good relationship with themselves. These are good things upon which to be focused as we live graciously with dementia.

Soul work

"The soul, like the body, accepts by practice whatever habit one wishes it to contact," Socrates.

Behavioral psychologists say it takes about 30 days to make a behavior a habit. Habits are helpful because we can do them without thinking of the steps, without any work involved. Socrates is saying that the soul can implement practices that can become habits too, just like the habits of brushing our teeth, etc. What soul habits do you want to incorporate into your life? For me, I want to incorporate even more positive thinking, seeing the goodness in every situation, and attaining the wisdom that is the foundation of appropriate action.

Mar 5, 2010

Our thoughts

"Our thought is creative, not because we will it so, but because it already is so. We cannot change this nor escape from its effects in our lives," Ernest Holmes.

I love the idea that I can create the quality of my life by my thoughts. The above quote can be an indictment if we use our thoughts to limit us, but it can be the source of freedom and joy if we use our thoughts to create loving environments for ourselves and those we live with. In a recent conversation someone seemed surprised when I answered her that I was doing extremely well. When I asked her about her response, she said that she thought I would not be doing well considering what I lived with (I believe she was talking about my living with someone with dementia.) How wrong! Of course, I am doing very well! (even if at times I get discouraged) I am doing well because I choose to use my thoughts to notice the wonders in my life, and I choose to dwell in appreciation.

Mar 4, 2010

Stress relievers

"It's time to clear out the clutter," Oprah.

The March 2010 O Magazine reports on ways to relieve stress, by Karen Reivich,PhD.
1. Get perspective. Look at the opposite of the worst-case scenario, so you can see the range of options.
2. Take purposeful action. If there is a rumor about job layoffs, schedule a meeting to talk with your boss. Rather than be anxious, meet your fear head on. Or, in case you fear the person you love has dementia, schedule a doctor and/or neuropsychologist appointment.
3. Look for joy. "Joy and gratitude can help inoculate you against the paralyzing effects of anxiety," Reivich.
4. Identify your strengths and the strengths of those around you to see your own power.

Mar 3, 2010

Finding Meaning

"Human beings cannot endure emptiness and desolation, they will fill the vacuum by creating a new focus of meaning," Karen Armstrong.

It is my experience that we can find meaning with a terminal illness too. Dwane and I discussed his diagnosis when we first heard it at Mayo Clinic, and we decided to live now fully. We decided to take advantage of the fact that we know he is dying, and do the things we have always wanted to do. Right now.

I also find meaning by knowing that how I respond to his illness is a spiritual path for me. I have seen many people live with someone with dementia, and I can find things from their examples that I do and do not want to replicate. It is fun for me to find my own path in this process, and it is a path of dignity and graciousness. I believe that how we show up in situations like this says a lot about the level of character we have developed, and it is an opportunity to develop our capacity as humans more fully.

Mar 2, 2010


"Moreover, as your meditation becomes deeper it will defend you from the perpetual assaults of the outer world," Evelyn Underhill - Practical Mysticism.

Finding purpose and meaning in our lives and the practices that support that meaning and purpose would be important enough if only for the reason Evelyn gives above. I have never seen a life without some exterior struggle, and perhaps in the lives of us who live with dementia, this is a daily occurrence. It is incredibly important that we find ways to still find meaning in our lives and the lives of those with whom we live.

Yesterday Dwane and I went to the library and shopping for the things he needs/wants. We giggled, enjoyed a 4-berry sundae together, and felt good about how much we accomplished. He checked out a new book to enjoy. Positive experiences and interactions are such an important daily event, and keeping things as normal as possible seems to help us both.

Mar 1, 2010


"If you want the day ahead to be full of miracles, then spend some time each morning with God," Marianne Williamson.

Whether one believes in God or not, life can be better maintained by finding a purpose in life and practices that support that purpose. My days are so much better when I begin them with prayer. There is considerable thought that we can make our lives better by focusing on the positive experiences in our life and the lives of others. Victor Frankl developed this to an admirable degree in a concentration camp. He was able to focus upon and enjoy the single blooming flower in the midst of the squalor and deprivation. We can notice the beautiful, the wonderful, the positive aspects of our lives too --- and when we do, we are all better for it.