Jun 30, 2010

Medications or not

"Water gives life to the ten thousand things and does not strive," Lao Tzu.

It seems there is considerable misinformation about whether or not medications can help dementia. Even in her researched book, Alix Kates Shulman strays from her topic of TBI (traumatic brain injury) into dementia and states that medications do not really help and are limited to six months effectiveness. Not true. I am not a strong advocate of medication. Even in my psychological practice, medications were not my first line of defense. But, to not medicate dementia seems to me equal to not medicating encephalitis or some other serious illness. The medications have given us two years of some stabilization in cognitive functioning. As I look back, Dwane is doing about as well cognitively as he was two years ago. In some respects he is doing better. I see physical decline, which I believe is caused by brain atrophy, but the cognitive decline is not so dramatic. We still have dramatic ups and downs in lucidity, but not a dramatic overall decline. So, I am an advocate of the research that suggests a combination of Aricept and Namenda. It has helped Dwane. And I continue to implement each and every thing that supports the quality of his/our lives and his independence.

Jun 29, 2010


"I and life are one. It cannot be otherwise," Eckart Tolle.

Yesterday Dwane remarked that he read on an oil can that one should not be in contact with used oil, and then reflected how much used oil he has handled. He worked in a full-service gas station to pay his way though high school and college. It seems human nature to try to figure out why something has happened, and I think he may very well be right. It is my belief that environmental insults are doing far more neurological and other health damage than we might know. His exposure to used oil, and his later exposures to paint and solvents as he worked a second job to support his family to supplement the modest income of a teacher, may very well be the cause of his neurological damage today. That is why we drink the Holy Tea made by Dr. Miller as recommended by our alternative health practitioner. It is said to detoxify the brain. I hope so.

Jun 28, 2010

Honor what is lost

"As we stroll through the stimulating streets on the first free walk since bringing Scott home, engaged in intimate engrossing conversation that I had somehow forgotten could happen, I am stabbed by an awareness of all I've lost," Alix Kates Shulman.

Nearly done reading her book, To Love What Is, I am still struck by the similarities of my emotions compared with hers. Similar too was my resolve to "sign on without a moments hesitation" and the despair when I realized this was going to continue perhaps significantly longer than I first considered. Differing in our reasons for signing on, hers seems vaguely based on the vows "in sickness and in health", while mine is based on my spiritual principles (nothing is more important to me than to discern the spiritual meaning from the events in my life and to develop my full human potential); our singular purpose of supporting our spouse in health resonates. She set aside her love of solitude and the work that was important to her, as I also have done. The loss of stimulating and intimate conversation is a huge loss for me, as it seems to be for her.

The book is a good read to see how one woman and man are coping with brain injury, the losses the caregiver experiences, the changes in the person with the brain injury, and some of the resources found to support. She, also, found the book, 36 Hour Day, most helpful.

Jun 27, 2010

"The Calling"

"I signed on without a moment's hesitation. For one whole year my life would be aflame with purpose, single-minded and clear -- to reclaim his life," Alix Kates Shulman.

Finally, I am reading a book which resonates with my experience and my choice to be caregiver. To Love What Is by Alix Kates Shulman. Her memoir addresses the TBI (traumatic brain injury) her husband incurs. It is an amazingly similar experience to that of dealing with dementia. So, too, in my experience, is dealing with someone who is intellectually disabled and/or someone with an addiction a similar experience. I resonated with Alix's account of how she purposely put her life on hold to support her husband's healing for the one year that she thought the doctors told her it would take. Then, I resonated with the "hitting the wall" emotional grief she experiences when she figures out that it is not going to be just one year.

I have not finished the book, but so far it is a book which reflects my experience and helps me feel less alone in my emotional journey in response to living with dementia.

Jun 26, 2010

Supportive reading

"Mind is the only reality, of which men and all other natures are better or worse reflectors," Emerson.

What if it is true that the only reality is what we create in our minds? Then wouldn't it be prudent to make sure that only the best thoughts, best movies, best conversations, and best reading were occupying our minds? Perhaps Emerson is speaking of mind as an aspect of the divine; and it doesn't really matter: the point is that the contents of our minds are reflected in our worlds. I am sure you know people who see or at least talk about only what is going right in their worlds, and I am sure we all know people who talk about only what is going wrong in their worlds. We all have both. Do you focus upon the positive or the negative in your life?

While I have not read Gail Sheely's new book (I intend to read it), it is probably a good read for us providing care (her book, "Passages" was on the best seller's list for many weeks and chronicled the stages one can expect to reach in one's lifetime. Her new book, "Passages in Caregiving: Turning Chaos Into Confidence", may be part of the supportive conversations we choose to have.

Jun 25, 2010


"Even if we perceive some type of universal harmony and duty as the means by which we justify coming to arms, the soul will have remnants of this pain," Celeste Frazier.

I have found this to be personally true. Even if I am taking a stand for what seems right and noble, it takes a toll on my soul (and my body). The path of nonresistance seems to work for me. That does not mean we let others mistreat us. We don't. But, we also do not respond to the call to arms by someone who is picking a fight. Perhaps this sounds like schoolyard antics, but I have been surprised by how many times adults in my life use bullying to get their way. It seems that schoolyard tactics remain the tools of some people their entire lives.

Nonresistance can be used with the person with dementia too. In the myriad of daily miscommunications, I can choose to not react with negativity.

Jun 24, 2010


"Peace in the world thus depends on there being peace in the hearts of individuals," His Holiness the Dalai Lama.

The perils to one's health when providing care to someone with dementia is well documented. In the latest Newsweek, Gail Sheehy (author of Passages) states, "Long-term caregivers are at high risk for sleep deprivation, immune system deficiency, depression, chronic anxiety, loss of concentration and premature death." So, how do we avoid these health perils?

One of the best ways for me is to remove from my "plate" all responsibilities, cancel all appointments and commitments and return to my own natural rhythm. It is imperative that we find time to do this. Sheehy suggests at least 1 hour every day and longer periods every few months. I agree. Medicaid allows the caregiver to be away 3-4 days every 90 days. For those of us who do not qualify for Medicaid, we need to find other resources to provide us these respites. I intend to schedule these types of breaks. It is good for me and, thus, it is good for Dwane.

Jun 17, 2010

Words and actions

"But we must remember that it's possible to affirm the existence of God with your lips and deny his existence with your life," Rev. Dr. Martin Luther King, Jr.

It is a habit of mine that I watch my own and other people's behavior, because behavior is more reflective of one's intentions and truth sometimes than one's words. In mental health we call this congruency. Does a client's words and behavior and affect match? For the same reason it seems important to be mindful of one's words so that they are reflective of what one wants and intends. My own attitude has slipped in recent days. I am going to spend the weekend reflecting on what is amiss and how to come back more into alignment with how I want to show up. I will be taking a break from writing this blog until next week. I can often regain myself in quiet and reflection. How do you come back to yourself?

Jun 16, 2010


"Three things cannot be long hidden: the sun, the moon, and the truth," Buddha.

I love that saying, but it seems like we humans can hide from or keep hidden the truth. And what exactly is the truth? In studying conflict in drama, the antagonist sees him/herself as the protagonist. I think that happen in life too. Most often we see things from our own perspective and the rightness we believe we have in that perspective.

I have come to a point again where I feel overwhelmed with obligations. I will take a look at what seems unnecessary and unwanted and delete again. I did yesterday hear of two ideas for creating respite for myself from the daily caregiving. One person said they take her mother to an assisted living center for a few weeks periodically to give a break to caregiving. Another told me of a person who has hired caregivers coming in all day every day. So, there are more options than just assisted living or not. Time to review my options.

Jun 15, 2010

Drawing strength

"Give me the strength to be free," Howard Thurman.

Recently we watched ABC network interview Stephen Hawkins. Fascinating. They said he has lived 40 years longer than predicted with the diagnosis of Lou Gehrig's disease. Unable to speak, his cheek twitch's control a computer-activated voice to give his responses. Hawkins responded to what advice he would give his children and grandchildren: "Look at the stars and not at your feet. Do not ever give up your work, for it gives your life meaning and purpose." Great advice from a man whose brain ranks among Newton and Einstein, according to the commentator. Hawkins lives with obvious struggles, and yet he continues to add meaning to our universe through his mind. What can be the "work" we do not give up, which gives meaning and purpose to our lives? Can caregiving be an aspect of that work that gives us meaning and purpose? Can we look for the blessings and not the mundane within our caregiving?

Jun 14, 2010


"We tend to think that the purpose of prayer is to terminate sickness, but we forget that the purpose of sickness may be to initiate prayer, or, more generally, a consciousness of the Infinite," Brad Lemley.

In the 1970's I found some solace in reading Harold Kushner's book, When Bad Things Happen to Good People. It seems that this is a question we as humans continue to ponder when things go awry in our lives: what is the meaning of this? The above quote is interesting. Have you ever wondered if there is a purpose to your loved one having dementia and what that purpose might be, and what is the meaning of it for you? Good considerations, and pondering them may help to bring some meaning into our lives as caregivers.

Jun 13, 2010


"We reboot in order to reactivate the system of our lives," Celeste Frazier.

The need to reboot is something familiar in our computer/technological society. Celeste Frazier uses that term to indicate that we can also reboot our lives. The ways she suggests are: meditation, inspirational reading, providing service, being with a spiritual community: all good ways for us to stay grounded in caregiving. Celeste Frazier also suggests that we reconsider some aspects of spirituality: citing the the word "satan" means crazy thinking in Aramaic -- the language Jesus would have used. It seems that many things bring us back to the power of our thoughts and the importance of monitoring the quality of our thoughts. Even when life is serene and going smoothly this is important; it is paramount when living with any stress, to include the stress of living with dementia.

Jun 12, 2010

What is freedom?

"They were free in moments when they engaged with and responded to their obligations," Holly Peterson.

Harry Thurman wrote of freedom as the ability to deal with the realities of one's situation so as not to be overcome by them. I, and I know many others, sometimes take on too much; and then I can feel overwhelmed by them in addition to the demands of providing care for someone with dementia. There are, in my opinion, two lessons here. One is for me not to take on more than what I want to do and is fun for me. The other lesson is to be very watchful of my attitude, and to choose anew any time I feel encumbered upon. Even in providing care for dementia, it is important to have "escape hatches": ways to provide respite for oneself. Yesterday I provided one of those for myself. I called and we are put on a waiting list for assisted living. There is no plan for us to take the action of actually moving into assisted living right now; I just want to know it is an option should the circumstances arise that call for it.

Jun 11, 2010

Managing what we think and say

"It is like having lobotomies in process all the time --- cutting out a portion of thinking that doesn't serve and disposing of it," Celeste Frazier.

Celeste Frazier is describing the process she practices to eliminate negative thoughts and to prevent herself from saying anything that does not serve the greater good. This or some other practice we can put in place to make sure we are having a positive impact on our world can serve ourselves and the others in our lives. Also, having someone in our lives to support our emotional/spiritual well being is imperative. I had allowed circumstances to drag me to a place of discouragement. It was time with a dear spiritual friend who brought me out on the other side. Being caregivers can be overwhelming. Let's be sure to look for and accept support to stay well and happy in this process.

Jun 9, 2010


"I learned a great deal about women during that time, about how in rough times, they pulled together, looked out for one another," Sandra Dallas in her book, Tallgrass.

Raised on a farm and involved in 4-H, this kind of support was what I experienced and witnessed as a child too. Women and men can be so kind and supportive of each other. It seems this may happen less now because we do not have the close-knit communities that were part of the fabric of earlier rural society. So, we create our communities. A benefit of this is that we get to choose who to include in our created communities. Who do you choose to have as your support system? Having a support system is so important for all of life, and especially when dealing with a terminal illness. It is important for me to choose people who value me unconditionally without judgment, who speak of life in positive ways, and who take the time to find out what ways they can be supportive of me. What qualities are important for you?

Jun 8, 2010


"Every time you actualize more of your potential by becoming more yourself, your joy increases, regardless of what's going on in your external circumstances," Rev. Dr. Michael Bernard Beckwith

Discouragement is probably a natural consequence of living with dementia, at least it is for me. A rough weekend. Seems we are in another cognitive decline, or at least it was a less-lucid time over the weekend. The extreme frustration of trying to communicate is what is hardest for me; that and the pervasiveness of the situation/symptoms. Something that perhaps is helpful is for me to notice is that when he goes through a period of lessened lucidity, it is an adjustment again for me.

So, if what Dr. Beckwith says above is true, none of this matters. All that matters is that I continue to develop my own potential. And, living with dementia serves as a firing kiln for that, if we choose to experience it so.

Jun 6, 2010


"You, who have called me from my mother's womb," Galatians 1:15

Some in the spiritual field believe that all that happens is according to a divine plan. If that is true, how does living with dementia fit in to living a planned life. It is not conceivable to me that there would be a divinity which is cruel, nor one which would plan things capriciously. So, if our lives are according to a divinely orchestrated plan, what do we do with this current life? Is it possible that the dementia serves a purpose, and that living with someone with dementia serves a purpose? If so, what could that purpose be? Since we are all dying, dementia is just another form of that. An observable, inching daily toward death. Perhaps that serves the soul's purpose of some people; as does providing care for that person might serve the soul's purpose of another. A long time ago I read of a reportedly true account of a person who had died in a car accident and she was given three choices: she could come back unharmed, she could come back in an invalid state, or she could proceed into death. Only after reviewed the lives of her loved ones and deciding that her coming back in a vegetative state would not serve their higher purpose, did she decide to come back unharmed. What purpose could the dementia serve in your life?

Jun 5, 2010


"A miracle is a change in perception," A Course of Miracles.

Our perceptions, or our interpretations, are what give meaning to our world. Maybe things are bad only if we perceive them as bad, and good only when we perceive them as good. What would your day be like if you merely observed, rather than prescribing meaning to what is going on in your life? Take the dementia: is it possible to not label it as bad? A good practice might be to try for one day to not label anything as either good or bad. What difference does that make in your day?

Jun 4, 2010


"Everything starts with an idea," Jesse Jennings.

That seems to be true. Once we made the choice - and there are many other choices we could have made - to be caregivers, then we formed an idea of how we wanted the caregiving to look. What were your ideas? I hope they included how you were going to take care of you, how you wanted to treat the person receiving care, what kind of an environment you wanted to create in the caregiving setting, how you wanted to spend the time that is not allocated to providing care, what you can do for fun -- to name a few. Everything starts with an idea: what is your idea of how you want your caregiving to look?

Jun 3, 2010

Nature and art

"I perhaps owe having become a painter to flowers," Claude Monet.

Yesterday seemed to be a day interacting with nature. On a drive I saw an adult deer and began slowing down. Good thing, because from the side of the road wobbled the most new-born fawn I have ever seen. Enchanting. Nature is so soothing, and this time of year can give us so much hope with the bursting forth of flowers and foliage. Just lovely. One of the ways I manage the stress of caregiving is to be sure I am in nature every day and to surround myself with beauty in the forms of gardening. In what way does nature nurture you?

Jun 2, 2010


"The rose exists to express beauty," Ernest Holmes.

This morning I awakened early at 5:00 a.m. to a chorus of birds singing their song. Soon they were joined by a chorus of coyotes. Haunting and lovely. It seemed this morning that both the birds and the coyotes existed to sing. Why do each of us exist? If we believe that we are individual expressions of creative energy, then for what purpose are we here? Some spiritual authors submit that we are here to love and forgive. I know that my day is different when I focus only on being loving and forgiving. Can we imagine what the world would be like if each of us could at every moment be loving and forgiving? Life is too intricate for us not to have a purpose for being here. What is your purpose? What is your purpose as caregiver? My caregiving goes better when I remember that I decided to do this in ways that afford the most dignity and well being for us both.

Jun 1, 2010


"Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow," Melodie Beattie.

Gratitude might seem silly to aim for in the mist of a terminal illness. The night-time hallucinations seem to be getting worse. One could focus on that. But for my own well being and his, I choose to notice and focus on the good. We worked together putting up outside furniture yesterday; something he used to do on his own. Interesting experience. We enjoyed a lovely dinner together and a balmy evening. There is much to notice and be thankful for.