Mar 31, 2011


"Humor brings insight and tolerance. Irony brings a deeper and less friendly understanding.” Agnes Repplier

I had a wonderful weekend of respite. My son-in-law came to stay here, while I went to stay with my daughter. It was a time of healing conversation, wonderful food, and cherished moments and insights. It is so healing for me to have a conversation in which I hear and am heard. The irony: I have noticed that the first few days back from an environment in which we have had mutual, give-and-take conversation is hard for me. Communications is so difficult here, and it takes me a bit of time to remember that the rhythm of communicating with the care receiver here is like swimming though molasses. One of my joys in life is easy, respectful, fun, direct, honest, open communication. That is one thing that is absent from my day-to-day life. So, I resolve to enjoy those moments when I hear and am heard. I also resolve to remember that communicating here is at an entirely different level and pace.

Mar 30, 2011

Let's be that 1/3

"From studies on caregivers over the last thirty years, the Rosalynn Carter Institute estimates that about a third of family caregivers decline in health and well-being and age prematurely. Another third adapt to the stresses with varying degrees of success. Many do learn new skills and become more empowered in all areas of their lives. And another third say their lives have been enriched by acting as family caregivers," Gail Sheehy.

The institutes's director, Dr. Richard Birkel goes on to say, "We don't understand what distinguishes each of these three groups, but is is definitely not just income."

So, let us be among the 1/3 whose lives are enriched by this experience of being dementia caregivers. I think some ways we can do this is to: decide what our main priorities are and to be sure to include our own well being among them; to have a circle of people who support us; to have times of respite; to have fun; to focus on the positive, to make sure we eat well, get enough sleep, fun and exercise.

Mar 29, 2011


"Self discipline is a quality of mind that is based on clarity and balance. Clarity requires an understanding of the big picture. What is most important to accomplish in this lifetime? Once we are clear on our priorities, then we need to approach them steadfastly, but with the flexibility born of self-acceptance and patience," Dr. Joan Borysenko.

Although Dr. Borysenko aims her remarks toward orientation to life, I think her advise serves as well for our orientation to being dementia caregivers. It seems that an important thing for us to do is to decide what is the most important thing we want to accomplish with this period of time we are dementia caregivers. My most important thing is to provide an environment which supports the dignity of Dwane's dying, while also upholding my own well being. What is your intention or priority?

Mar 28, 2011

Supporting one another

"Give them wisdom and devotion in the ordering of their common life, that each may be to the other a strength in need, a counselor in perplexity, a comfort in sorrow, and a companion in joy," The Book of Common Prayer.

What a beautiful world this would be if everyone had the above intention and the above level of support from others. Yesterday I wrote about our Circle of Support. It is sometimes easy to succumb to the temptation to notice which people are not supporting us, ones we may very well have had reason to expect would support us. But, that habit of noticing does not serve us. Better still to notice the people who support us as strengths in need, counselors in perplexity, comforts in sorrow, and companions in joy. I so appreciate each person who supports Dwane and me, and one of my intentions with this blog is for these writings and the comments from readers to serve as support for one another. I hope you have a wonderful day.

Mar 27, 2011

Circle of Support

"The reality of family caregiving is that you must pay attention to two lives --- your own as well as your loved one's." Gail Sheehy.

Gail Sheehy recommends having a family meeting to address the needs of caregiving someone with a chronic and progressive illness, so that every family member can determine what skills they have and how they can help with the caregiving. It would be optimal if all families would share information and share the burden of caregiving, but let us be realistic that many do not. With Dwane's family all living distant from us, I cannot count on their hands-on help and support. So, instead, I have built a circle of support here. That circle includes: a spiritual director and life coach who listen to me and support me, an attorney who can answers questions about eldercare, a financial advisor to help with money decisions, a CPA to help with tax decisions, a helpful longterm care insurance agent, a group of women friends with whom I can water color and express my creativity, a son-in-law who helps with respite care, numerous friends and family members who reach out to us with love and support. Is your circle of supporters meeting your needs? If not, who else can you add?

Mar 26, 2011

Brilliant idea

"Arise in the dignity of your own creative ability...." Raymond Charles Barker.

A dear friend of mine has passed along to me a brilliant idea that she heard on programming on NPR (National Public Radio). The program suggests that family caregivers can be paid for caregiving. The purpose of the program seemed to be to deplete joint income for consideration of financial support from governmental agencies for assisted living. That is not a concern for us, as we have longterm care insurance. But I love the idea of getting paid for this 24/7 "job"! I have run this idea past our financial advisor and attorney, and was told that one can be paid as long as records are kept and one receives pay comparable to agency services in one's geographic area. (Please check with your own attorney before initiating this.) I am just so delighted that there are ways to be compensated the sacrifice of our professional lives and income.

Mar 25, 2011

Types of dementia

"Dementia is a word that encompasses many conditions, all of which have in common a deterioration of mental functioning," Dr. Paul Donohue.

I was talking with a dear friend who is very well informed about the difference between Alzheimer's disease and Lewy Body Dementia. Both are types of dementia, with Alzheimer's disease accounting for 60-80% of the dementias (according to Dr. Donohoe). Lewy Body Dementia is the second most occuring, and it is my personal opinion that it may actually be higher in incidence than data show because it is still a relatively unheard type of dementia. Even our family doctor who is very well informed is not very familiar with Lewy Body Dementia, and certainly most lay people are unaware of it.

All dementia types have cognitive deterioration, but this shows up differently. Lewy Body Dementia does not affect the memory like Alzheimer's does, but LBD (Lewy Body Dementia) does affect reasoning, struggling to express oneself verbally, and motor skills.

Mar 24, 2011

Stages of Caregiving continued

"No one really expects it, but at some time or another, just about everyone has been --- or will be -- responsible for giving care, for a sustained period, to someone close to them," Gail Sheehy.

There are many things in the book, Passages of Caregiving, that are irrelevant to me as a dementia caregiver; but one of the things most helpful was Sheehy's acknowledgement that the yearning to have our old life back is an illusion. I sometimes think that after Dwane has died, I can have my own life back; but Sheehy points out that one's life is never the same after providing caregiving. We are changed by the experience. So, instead of wanting my old life back, I will focus on the present and what my life will be like when this caregiving is finished. This experience of being dementia caregivers will change us. I want to make sure that it changes me for the better.

Mar 23, 2011

Stages of caregiving

"My intention is to illuminate the challenges and rewards inherent in the caregiving passage -- to identify universal patterns in the chaos and give the journey a form that makes sense." Gail Sheehy.

Gail Sheehy's book, Passages of Caregiving, outlines her 17 years of providing caregiving to her husband as he died of cancer; a situation with some similarities and considerable differences from what we are doing as dementia caregivers. Her stages may be of some help, although I have the interior caution of knowing that the Stages of Grief outlined by Dr. Elizabeth Kubler Ross and subscribed to by many for many years has recently been debunked by research. Still, it may be helpful to know that one does go through phases as a caregiver. Sheehy's stages are:
1. Shock and mobilization: Advocate with authority
2. New Normal: Turn illness into opportunity
3. Boomerang: Summon a family meeting
4. Playing God: Accept what you cannot change
5. I Can't Do This Anymore! Create a circle of care.
6. Coming Back: Replenish Your Lifelines
7. The In-Between Stage: Prepare Your own path to comeback
8. The Long Good-bye: Love is letting go, Together.

Mar 22, 2011

Tips for Allergies

"Global warming has caused allergy season to begin a little earlier every year and last a few days longer," Dr. Anju Peters, allergist at Northwestern Memorial Hospital in Chicago (source: Parade Magazine, March 20, 2011).

Dwane has been bothered by allergies this spring, and this article says that besides over-the-counter and prescription medications, one can try: Adding lime to drinking water as it has bioflavonoids which are a natural antihistamine; use a pinch of petroleum jelly at nostril exterior opening to catch allergens before they go into nasal passages; eat more salmon for its omega-3 fatty acid which has anti-inflammatory properties; increase your magnesium intake which relaxes airways.

Mar 21, 2011

Passages in Caregiving

"When people grow older, get sick and die, their formerly robust lives are often forgotten. To be forgotten is something we all fear," Gail Sheehy (Book: Passages in Caregiving)

For Dwane to hear that he had been a positive influence in the world was the reason for the activity I invited people to participate in for his 75th birthday; so that he would know he had not been forgotten.

I have checked out Gail Sheehy's book on caregiving from our local library and will share highlights as I read it. I will share what I think is helpful for us as dementia caregivers.

Mar 20, 2011

Default decisions

"I didn't think how saying yes to him would mean saying no to all the other things I wanted," Jennifer Donnelly.

I have heard spiritual teachers remind us that sometimes we make our choices and our decisions by default, by not thinking about what we really want and choosing that. In mental health many agree that within any situation we have the power of choice: how we respond to that situation. It is sometimes easy to base our decisions on what others want, rather than what we want. For instance, in a recent dental visit the dental hygienist wanted Dwane to use a particular mouthwash for a certain number of days, alternating with a special toothpaste -- but only a pea-sized amount. Good grief! I am worried about how to cope with getting us to all the appointments needed, doing all the business aspects of our lives, cooking, cleaning, yardwork, laundry. And, to add this dental regimen on top of that -- which I would have to supervise because it is far too complicated for Dwane to handle?

I recommend that we choose gently among the parameters of our situations, and not allow the expectations of others to dictate what we might choose. "Some people with DLB (Dementia with Lewy Bodies) die within 2-3 years after diagnosis, while others may do well for 5-10 years." (Mayo Clinic literature) Is this regimented dental hygiene really worth the time and effort? Let us make our own decisions based on our finite human strength and the well being of the care receiver and our own needs as dementia caregivers.

Mar 19, 2011

Staying Positive

"One of our biggest everyday dangers is the real possibility of being mesmerized by the problems in our world." Margaret Stortz.

How very true, and Margaret Stortz was not speaking of the additional challenge of being dementia caregivers. She was speaking of the media sensationalism of bad news. So, we as dementia caregivers, have the onslaught of negativity from media, AND we have the day-to-day and minute-to-minute challenge of supporting someone who has a terminal and progressive disease. Plus I still do not have our taxes done! Whew! There is so much to do, and the responsibilities for all of that fall upon our shoulders. So, how do we stay positive? One of the best techniques I know is to have the daily intention of looking for things about which to be grateful. Watching a funny movie helps too. Laughter is a great relief of tension.

Mar 18, 2011

Support and relief

"If you stop to think about it, there are very few benefits in your life for which you can take sole credit." Gary Smalley.

We cannot do it alone -- handle the 24-7 demands of being a dementia caregiver. Burnout is a hazard, and signs of it include fatigue, irritability, loss of interest in activities, overuse of alcohol, crying, sleep problems, physical ailments. We must be vigilant about putting our own needs first, which ultimately helps the care receiver.

Tips: Ask for and accept help, don't give in to guilt, stay connected to people/events that nourish us, get enough rest and exercise, take time for yourself, stay positive.

Options: adult care centers, in-home respite, short-term nursing homes. For more information, contact your local Area Agency on Aging 800-677-1116 or

Mar 17, 2011

Dignity and heroism

"Remember this, - that there is a proper dignity and proportion to be observed in the performance of every act of life.” Marcus Aurelius, Roman emperor

As I hear the news of the multiple tragedies in Japan: first a 9.0 magnitude earthquake, following by a horrific tsunami, followed by nuclear reactors malfunctioning, I am struck by the dignity and heroism that is broadcast to us. No looting, standing in long lines for food and water with patience for hours, volunteers helping each other with such things as bucket brigades for water supply. Handling such adversity with dignity, grace and heroism.

So, too, do many dementia caregivers handle the diversity and challenges of providing care to someone with dementia with dignity, grace and heroism.

My hat is off to all of you as well as those heroes in Japan.

Mar 16, 2011


"Glorious blueberries, sweet acai berries, luscious strawberries --- new research shows they may boost your aging brain." AARP The Magazine, March/April 2011

The article on page 20 goes on to say that as we get older, damaged cells accumulate in our brains, perhaps contributing to dementia. Berries have polyphenols which activate proteins that are able to clean up damaged cells. Some of this research comes from U. S. Department of Agriculture's Human Nutrition Research Center on Aging in Boston. Blueberries are believed to rank first among the berries for their antioxidant powers, while strawberries are highest in vitamin C, and acai berries contain both omega -6 and -9 fatty acids. Now, that sounds better to me than beets.

Mar 15, 2011


"More than 130,000 healthy adults by the Harvard School of Public Health found that those who took ibuprofen (Advil, Motrin) regularly over six years reduced their risk of developing Parkinson's by 38%," Time Magazine, March 14, 2011.

Since Parkinsonism characteristics are a component of Lewy Bodies Dementia, this is research that is worth noticing. This research into the effectiveness of ibuprofen could open new ways to treat Parkinson's and Parkinsonism symptoms.

Mar 14, 2011


"We cannot judge others harshly without receiving back into our own consciousness and experience the very things we claim for others. If everyone were to live by this rule there would be no injustice in the world," Ernest Holmes.

Can you imagine a world in which kindness and nonjudgmental was the standard of the day? A person at our exercise class has a son in the hospital because of bullying at school. Outrageous! As someone who has been both educator and mental health practitioner I know that bullying damages both the victim and the aggressor. We who are dementia caregivers may not have any control over how students treat each other, but we can control our own thoughts. We can refrain from judgmental thoughts about others. Christians are currently observing Lent, in which some of them practice a discipline of giving something up -- as a spiritual discipline in preparation for Easter. Let us consider together giving up negative thoughts about ourselves and others. As dementia caregivers we have such an opportunity to model to the world by our behavior how we treat the care receiver (thus enhancing the tolerance for people with physical and cognitive differences). We can expand this influence by also monitoring our thoughts to eliminate any negative thought and replace it by thoughts of kindness. Toward ourselves and others.

Mar 13, 2011

His birthday

"The same lifeforce that grows an oak from an acorn, a mountain from the earth's molten core, a stream from the spring thaw, a child from an egg and sperm, an idea from the mind of a human being is present in all things, all thoughts and all experiences," Dr. Joan Borysenko.

I am so pleased with the response to Dwane's birthday. He has gotten thoughtful remembrances from three of his favorite family members: his daughter, sister and cousin. We took cupcakes to our exercise class yesterday, and they sang Happy Birthday to him; such kind people. The family gathering here was joyous, fun and supportive. A very good 75th birthday for him. As a dementia caregiver I am delighted to have seen people's response to him and his enjoyment.

He got an unexpected gift of appreciation when we saw his doctor for prescription refills. His doctor was one of his students when he was a teacher, and the doctor told Dwane that he was his favorite and best teacher. The doctor went on to say that Dwane was voted teacher of the year, year after year by the student body. What a nice thing for Dwane to hear.

Mar 12, 2011

Dying with dignity

"Helping someone who has Alzheimer's through the last years of life is a difficult journey. As the disease progresses, you'll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life." Mayo Clinic Alzheimer's newsletter.

The latest Mayo Clinic Alzheimer's newsletter gives some tips for dealing with the dying phase of life for someone with dementia. The newsletters suggests: Create advance directions, focus on comfort - not life extension, consider hospice or palliative care, connect through the senses if someone is no longer able to talk, and assist the person to die with dignity. All good advice for those of us who are dementia caregivers, for the very difficult decisions ahead.

Mar 11, 2011

International Women's Day

"Women are always beautiful," Ville Valo.

This week we celebrate International Women's Day. I find that I am so grateful for the women who have gone before me or alongside me and made the way smoother and easier for the rest of us. Since more women than men are dementia caregivers, it is also an opportunity to celebrate the important work they do in witnessing the ending phase of someone's life. This week let us be grateful for all the good women.

Mar 10, 2011


"This super food boosts your brain," Dr. Oz in speaking of beets.

Today's Dr. Oz program featured beets as a super anti-oxidant that can be helpful in addressing some of the symptoms of Alzheimer's disease. He suggests baking them at 250 degrees and eating them once a week. Dwane likes beets, so this will be an easy addition to our diet-approach for dementia. As a dementia caregiver, I am always looking for easy-to-implement supports for the health of both of us.

Mar 9, 2011

Rem sleep disorder study

"Sleep disorders, particularly the tendency to act out dreams known as rapid eye movement (REM) sleep behavior disorder, are common in people who have DLB (Dementia with Lewy Bodies)." Mayo Clinic Patient Education.

We received recently from Mayo Clinic the opportunity to participate in research they are doing on the effectiveness of medication to help with REM sleep disorder. We are both eager to participate; as, not only could this research benefit us, it can also benefit many others. (DLB is the second most-occurring type of dementia, following Alzheimer's disease.)

Supporting research into the causes, treatment and prevention of dementia is important to people in general, and more specifically to us as dementia caregivers and the persons for whom we provide care. On last night's news there was a report of various institutions conducting research into the effectiveness of acupuncture in the treatment of pain management and hot flashes. This is another avenue that we might consider to address the chronic back pain that troubles Dwane. Working together we have a better chance of addressing this devastating illness.

Mar 8, 2011


"We do not have to learn courage, for it is part of who we already are. We have only to unlearn fear." Dr. Joan Borysenko.

A person recently brought to me the concern that she was afraid to confront another person. It does seem that confrontation is hard for some people, though certainly not all. Another definition of courage that is familiar is that courageous people act even if they are afraid. I like the idea that courage is an innate part of us. Unlearning the fears we have been taught by life seems to be a life long experience. Some people cover up fear with anger, rejection, addictions, withdrawal; but fear is believed by many to be the basis for some of these other emotions and behaviors. A good practice today might be to be willing to recognize the ways that courage is a part of who we are. In what ways can you be courageous today?

Mar 7, 2011


"Classical ballet will never die," Ninette de Valois.

Yesterday we attended a live, telecast performance of the Bolshoi Ballet from Moscow. It was fabulous. It is so wonderful what is doing with the Opera in Cinema series of ballet and opera performances. Ticket prices should one have been attending in Moscow were $349 US dollars. We paid $20 per ticket. The telecast features not only the performance, but also educational bits and behind-the-curtain scenes. I highly recommend these performances, if you are interested in either opera or ballet. One of the highlights of our trip to Russia was to attend the ballet there. Now it is possible just to drive to the nearest theater. It is a way for me to bring music and culture into our lives.

Mar 6, 2011

Dying process

"How wonderful it is that nobody need wait a single moment before starting to improve the world," Anne Frank.

Death and dying experts suggest that for a person to be free to die it is important that he/she is told that he/she has made a difference in the world. Because of that, an activity that we have planned for our family birthday party is for family members to tell Dwane a specific positive difference he has made in the world. It should be fun. Family members who live distantly are invited to send Dwane a note telling him what a difference he has made in their lives.

Mar 5, 2011


"There simply is not enough money in the world to buck the natural current of individual freedom and independence of thought," Abraham.

With the events ongoing in northern Africa, we are reminded of the historical evidence of humans striving for individual freedom. Perhaps nothing is sought more than personal freedom. Sometimes the role of dementia caregiver can seem imprisoning. It is a good discipline for me to look for and claim the ways in which I still have freedom. At the very least, I am free to choose my attitude toward this situation of dementia caregiving. What is the freedom of your choice as a dementia caregiver?

Mar 4, 2011

Well lived life

"The true tragedy of a routinely spent life is that its wastefulness does not become apparent till it is too late," Amitav Ghosh.

Even as dementia caregivers we can live our life with thoughtful consciousness. We can make sure that we are not numbed out to this experience. We can make sure that we do not spend our time focusing our thoughts on how we would prefer our life to be. We can embrace the life we have -- as dementia caregivers, and live it well. We can implement creativity, surround ourselves with beauty, ask for or pay for the help we need, make time for ourselves, enjoy moments with the care receiver, and look for opportunities for which to be grateful. We can live a conscious life and be happy in the midst of our roles as dementia caregivers.

Mar 3, 2011

Creating our circumstances

"People are always blaming their circumstances for what they are. I don't believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can't find them, make them," George Bernard Shaw.

As dementia caregivers we may balk at the idea that we have created our own circumstances, and perhaps it is not helpful to deeply consider that possibility. Afterall, we are here, so now what? I think that is the better application of the above statement: we can create our circumstance to be what we want. We can't change the fact that a loved one has dementia, but we can change our attitude toward it. Do you view it as a burden? Is it possible to change one's attitude to seeing how the dementia might be bringing out the best in ourselves or someone else? A friend suggested the idea that perhaps dementia can have the purpose of allowing a person to do their soul growth here and now before they die. There is no way for us to know what benefit dementia may have for those who have it, but we can choose how we are going to respond to dementia as caregivers. We can create the environment and circumstances that we want within this role as dementia caregiver.

Mar 2, 2011


"Most individuals who have Dementia with Lewy Bodies are affected by parkinsonism: signs and symptoms seen in Parkinson's disease." Mayo Clinic literature.

This is an increased symptom of Dwane's disease: stooped posture, shuffling walk, rigid muscles, slow movement, decreased facial expressions, tendency to drool, difficulty with fine motor skills. What can we do about these symptoms? The exercise program, Silver Sneakers, helps keep him flexible and works on his balance. We have started putting a towel on his pillow to help address the drooling at night. It takes him longer to do anything, so we plan things in advance so that he can be ready in time. I put a placemat under his plate to help capture escaping food. Fastening the seat belt in the car is laborious and slow. Because of my training in special education, I am aware that it is important to encourage people do what they are capable of doing. Having said that, I need to allow a lot more time for him to do tasks in order for him to remain independent. It is like when I had small children: it would certainly be easier to do a task myself, but, in my opinion, it is important to support him being independent for as long as possible.

Mar 1, 2011


"It's not the load that breaks you down; it's the way you carry it," Lena Horne.

The above quote is an eloquent way to remind us that our attitude is everything. Don't we all know people who seem to have significant adversity in their lives, but remain cheerful, helpful and optimistic? And, conversely, don't we all know people who seem to have a life that is going smoothly who are negative, self-absorbed and self-pitying? So, too, it is for us as dementia caregivers. Of course, this is a difficult road. Perhaps we do not know anyone who would appear to have it quite as difficult as we do just now with the sadness of this terminal and progressive disease. But, we can also look around at other dementia caregivers and see some who are doing it with a positive attitude, with respect for themselves and the care receiver. It is our choice which way we respond to our role as dementia caregivers. It is important to honor the truth: this is a difficult task. It is important to change what we can change about the number of responsibilities we have with caregiving. And, it is important to be vigilant about keeping a positive attitude about our lives as dementia caregivers, and the lives of those for whom we provide care. Gratitude is such a good practice for one's mental health.