May 31, 2010


"The sharing of joy .... forms a bridge between the sharers," Audre Lorde

Dwane was in an especially buoyant mood yesterday. While these moods, as well as lucidity, come and go, I think yesterday's good mood was in part because of an early morning phone call from his daughter. It is so important for each of us, and one of the steps in dying, to know that what we did with our lives has value. When raising children was part of one's life, a positive relationship with them can give meaning to our lives. A reason for joy.

May 30, 2010


"Setting a goal is not the main thing. It is deciding how you will go about achieving it and staying with the plan," Tom Landry.

How true. Dwane and I talked on the drive home from Mayo Clinic when he first got his diagnosis how we wanted to do this. The goal is for him to stay at home if possible and for us to continue to enjoy life and each other. Even then it was apparent that while the goal was important, even more important was how we were going to do this. And that lies mainly with us, the caregivers. Peace, respect, dignity, calm, fun, beauty, spirituality are all of utmost importance to me. How I will achieve our goal is by implementing the practices of respect, having fun, honoring the moment, setting up structures that support ease, and drawing the best from both of us each day.

May 28, 2010


"A supportive community can foster serenity, courage and wisdom," Eileen Flanagan.

While in a social setting recently a person directed a question about the content of the constitution to an attorney who was present. I knew that Dwane would know the answer to the question, so I directed the question to him. And, indeed, he did know the answer. As part of providing care, I also choose to take on the task of raising peoples' awareness of and respect for the person with dementia. Just because a person has dementia does not mean he/she does not have something to contribute. We help not only the person with dementia, but society at large, when we increase others' awareness of and respect for every person.

May 27, 2010


"Listening is a magnetic and strange thing, a creative force. . . . When we are listened to, it creates us, makes us unfold and expand," Karl Menninger.

Listening is what I give and receive in life coaching and spiritual direction, and yesterday listening and being listened to was what I enjoyed with lunch with a friend who also provides 24/7 care for her spouse with dementia. It was so good to share with someone who is compassionate and truly understands. Some people find this in support groups. Whwereever we can find being listened to with compassion, it is very important to us.

May 26, 2010


"To have a sense of humor is to be wise enough to see things in proportion," Magnificat, May 2010.

I love Dwane's sense of humor, and I think our emphasis on good cheer buoys us emotionally, physically and spiritually. It is lovely that he still has such a good sense of humor, and it is one of the things I cherish. Laughter is proven to decrease stress and promote health. It is so good to be of good cheer. What can you laugh about in your life?

May 25, 2010

Diversions and gratitude

"If it is true that the observer and the observed are inextricably linked in creating reality, then our gratitude actually does help bring the world into being," Dr. Joan Borysenko.

A friend who provides care for her husband with dementia sells clothing out of her home. I like to support her because I think she can use the money, and I think she benefits from the diversion: the thing of interest for her to do besides provide care to her spouse. It is important for me to have diversions too; things which interest me, are fun and give me hope. Some of my diversions are gardening, water and oil painting, writing, biking/running, life coaching (which is lovely as I can do it by phone from home), and cooking. Last night I made a rhubarb pie from new spring rhubarb. Yum. What are the things that nurture you while you nurture someone with dementia?

May 24, 2010

Seeing joy

"The question is not what you look at, but what you see," Henry David Thoreau.

Yesterday was a lovely day. We drove through a scenic area in the morning, followed by breakfast at a favorite restaurant. Then in the afternoon I planted the garden, and it was capped off by a dinner party in the evening. Delicious food and wonderful company. Very kind people who drew Dwane out and included him; our son-in-law especially. Laughter, safety and a respite from too much togetherness. Good for us both.

May 23, 2010

Doom and gloom

"It is a fair, evenhanded, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humor," Charles Dickens.

Dwane tends toward doom and gloom. I no longer remember if that is part of his inherent personality or part of this disease process, but it is a quality that dampens environments. As part of managing the environment to support life, we have a house rule: Speak only the positive. It is just a habit. Whether one sees the trouble one had in walking through the aisles at the grocery store (one of his primary complaints), or whether one sees the abundance of products, the friendly faces, the ease of American shopping. Doom and gloom are contagious, and it is important for me to be vigilant to avoid it in any form. In my own thinking about upsets, in conversations with others, in concern about the future. Just as doom and gloom are contagious, so are laughter and and joy. Laughter and joy are life enhancing, and I choose to spend my time there.

May 22, 2010


"Judge not that ye be not judged, for with what judgement ye judge ye shall be judged," Jesus.

Judgment is such an interesting thing, and it causes so much pain for humanity. When I am providing life coaching, the judgments of others is often the topic for the person being coached. Long ago it occurred to me that any one of us, given a certain set of circumstances, could be like the person we are judging. For instance, when I worked with children with cognitive disabilities and others were unkind to them; I would tell the children being unkind that all it would take is a blow to the head, and they could be experiencing what they were ridiculing.

I remember that in providing care to someone with dementia too. Illnesses fall upon us all, and if the lottery of life had been different, I might be the one requiring care. That helps me to give care in ways I would prefer receiving it.

May 21, 2010


"Out of clutter find simplicity; from discord find harmony; in the middle of difficulty lies opportunity," Albert Einstein.

What opportunity lies within the difficulty of living with dementia. Many, I would say. The opportunity to be kind and patient, despite episodes of contrariness. The opportunity to look for the good, instead of seeing what is going wrong. The opportunity to find ways to connect and have fun, within the difficulties of communication and immobility. The opportunity to find serenity within the discord of misremembering, difficulty doing tasks. The opportunity to make this a dignified journey.

May 20, 2010

Tips for Caregivers

The following is taken from the Mayo Clinic Alzheimer's Caregivers Newsletter. It is useful information.

"Consider practical tips to help your loved one maintain comfort and dignity as he or she becomes more dependent on you or other caregivers.

Reduce frustrations
A person who has Alzheimer's may react with frustration, agitation and even aggression when once-automatic tasks become difficult or impossible. To limit challenges and ease frustration:

■Schedule wisely. Establish a routine to make each day more predictable and less confusing. Schedule the most difficult tasks, such as bathing or medical appointments, for the time of day when your loved one tends to be most calm and agreeable.
■Take your time. Expect things to take longer than they used to. Schedule more time to complete even simple tasks so that you don't need to hurry your loved one.
■Involve your loved one. Allow your loved one to do as much as possible with the least amount of assistance. For example, perhaps your loved one can dress alone if you lay out the clothes in the order they go on.
■Limit choices. The fewer the options, the easier it is to decide. For example, provide two outfits to choose between — not a closet full of clothes.
■Provide simple instructions. When you ask your loved one to do something, do it one step at a time.
■Reduce distractions. Turn off the TV and minimize other distractions at mealtime and during conversations so that your loved one can better focus on the task at hand."

Full health

"Good health is not just the absence of disease; it is experiencing vitality, enthusiasm, hope, happiness, self-respect, peace, abundance, and all good things,: Dr. Linda McNamar

As we strive as caregivers to maintain our own good health, it is good to keep in mind that it means more than just freedom of disease. It is about attitude and self regard. We had fun yesterday. Went to a greenhouse and came home and planted tomatoes in our greenhouse, to accompany the lettuce and herbs that are already thriving there. The greenhouse, and the garden we will soon plant, will provide good nutrition without pesticides. I love picking from the garden immediately before dinner and serving what is available from it. Many years ago I learned in 4H that for full nutrition one should eat or preserve produce within 20 minutes of picking it. I'm not sure that is literally true, but it is fun to know that one is eating something at the peak of its nutritional value.

May 19, 2010

Valuing life

"Our common culture has lost the joy in children, the tenderness for the ill and handicapped, and the priority given to bonds of family and friendship over personal comforts," Sharon Mollerus.

Today we are going to a friend's funeral. Diagnosed with cancer just weeks ago, he is now dead. Seems a merciful way to go. But that is not the journey for those of us caring for someone with dementia. Our task is to love the person in the very slow and difficult decline; to value life in its slow dismantling.

May 18, 2010

What can I do?

'If there is some lack in the life around you, ask yourself, "What can I do or say here that will bring forth good,"' Dr. Linda McNamar

What a wonderful approach and attitude toward life! When problems occur, and they do in all of our lives, instead of being melancholy or discouraged, we can think of what we can do or say to make it better. We get that chance often in living with dementia. Is there difficulty walking? -- arrange for a walker and/or get a 'disabled driver' sticker from your court house. If there are problems with remembering something, create a schedule to support remembering.

Last night on the news there was a report that some research is indicating that commonly used pesticides are causing ADHD (Attention Deficit/Hyperactive Disorder). I would not be surprised. I personally wonder if the increase in cases of dementia and diagnoses within the autism spectrum are not also caused by environmental insult. In our homes we can do something about that. What we eat, what we use on our yards. There is much a single person can do to make life for all of us better.

Waht can I do?

May 17, 2010

Seeing good

"Looking for the good can lead to positive action in the midst of something that isn't working," Rev. Dr. Linda McNamar.

Seeing the good in our lives does not mean that we try to label everything by saying it is good. That does not work. What does work is to look for, and we can find, those things that are going well within whatever life is presenting to us. It also means looking for ways to turn into good that which we are living. In living with dementia, it might mean looking for the glimmers of lucidity, looking for the things the person can still do, looking for moments to enjoy together. It can also mean enjoying memories of the past and planning things to do in the future.

We have not implemented our "play dates" since returning to our home. I intend to do that this week. Something to look forward to; something to take us from the mundane.

May 16, 2010


"You cannot find yourself in the past or furure. The only place where you can find yourself is in the Now." Eckart Tolle

How true. Distress is caused by thinking of the problems of yesterday, and fear is caused by worrying about tomorrow. Reading the book, Still Alice, caused me discouragement because I allowed it to cause me to fear what Dwane and I may face in this disease process of dementia. But, when I stick to today, really, all is well. Today I am able to manage what life presents. Today, this moment, all is well.

May 15, 2010


"There's a song of the Universe --- let's sing it," Ernest Holmes.

It is a wonderful thought to consider that we each are completely individual creations; and that when we are at our highest and best, we are singing the song of the Universe. What song are you singing today? What song is the person for whom you are providing care singing? It is a good practice to look for the benefit of any given situation; and to know the power of our choice in how we show up each and every moment in any given situation.

May 14, 2010

Spring growth

"Walk lightly upon the earth and live with loving-kindness in your heart," Buddhist teaching.

Spring is a wonderful time to watch the unfolding of earth with all her emerging plants, blooms and grasses. My second planting of lettuce is coming up in our greenhouse (first planting froze). In our recent travels it was fun to see the different stages of spring across this continent. The seasons of life can serve to teach us metaphorically about life. So, in spring what are the new beginnings? This may be hard in living with dementia, as it is essentially and closing down. In what way can I rephrase this disease process with beginnings instead of with endings?

May 13, 2010

Outlook equals results?

"Decades ago, Albert Einstein and other physicists gave us a new view of the world. Their research into quantum physics proved that this is a fluid universe where what one is looking for determines what one sees." Rev. Dr. Linda McNamar

Sometimes I get discouraged with the bleak outlook of this disease process of dementia. I do subscribe to the idea that we generally encounter what we expect or are looking for in life. For instance, if in our life experience we are expecting people to take advantage of us, we are more likely to encounter people who take advantage of us. Whereas, if we are expecting life to provide us with people who are trustworthy and supportive, we will encounter more of those types. How then can I reconcile looking for optimism, health and joy within the living experience of the disease process of dementia? It occurs to me: isn't life itself a "disease process"?; meaning, that we live; we die. I guess it is what we make of life during the time we are here that is important, regardless of the external circumstances.

May 12, 2010

65 million unpaid caregivers in US

"It is easier to recognize prayer as an attitude that should characterize all our activities. The more we become alive and awake, the more everything we do becomes prayer." David Steindl-Rast

65 million unpaid caregivers in the U.S.!? (AARP/May/June) How did they count us? And what do these caregivers wish for?: "money, time off and a little extra help top the list for caregivers seeking ways to better manage all their responsibilities": (Caregiving in the U.S. 2009 report) The tasks that caregivers routinely do without pay include: shopping for groceries, driving to appointments, doing housework, managing finances. On average this takes 20.4 hours per week. When someone wants to help and support a caregiver, taking on any of these tasks could be beneficial.

May 11, 2010


"Life is change. Growth is optional. Choose wisely," Karen Kaiser Clark

Change in life is inevitable. What we can control is our attitude during and toward the change. One way we can make change smoother is by clarifying the vision of what we want and how we want to handle ourselves during the change.

So, in living with dementia, what is the vision of how you want this to go for you and your care receiver? You cannot control this disease process, but you can control the attitude you have towards the process. Let's choose wisely.

May 8, 2010

Choosing one's way

"Everything can be taken from a man but one thing; the last of human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way," Victor Frankl.

If Victor Frankl could find the resolve to have a benevolent and altruistic attitude toward everyone in the midst of the horrors of a concentration camp, we most certainly can find the resolve to be benevolent, find meaning and purpose, be at peace and experience joy while providing care for someone with dementia. Frankl's book, Man's Search for Meaning, is a great resource for finding strength and purpose within a difficult situation.

Nurturing the nurturer

"Her ways are ways of pleasantness, and all her paths are peace," Proverbs 3:17

On this day in which we recognize the love, support and nurturing of all mothers, I want to include all caregivers. For aren't we doing what we attribute to mothering? Planning meals, planning for health needs, creating an environment that supports the dignity of all who live in and enter our homes, being patient and kind, setting up schedules that support successful living, finding time for fun. Yes. Today let us acknowledge the good work we do on behalf of the care receiver, ourselves and our families.

Happy Mother's Day, regardless of your gender.

May 7, 2010

Options and resources

Today's blog contains quoted material from Mayo Clinic's Alzheimer's blog, because I agree that it is important for us as caregivers to become familiar with the range of services that may be needed as the disease of dementia progresses.

"Changes that occur over the course of Alzheimer's disease make it almost certain that additional care, including residential care, will be needed. The decision is often heart-wrenching and met with uncertainly, fear and guilt on the part of the family or caregivers involved in the process.

Having said that, I can't stress enough the importance of doing your homework as early as possible (well before your loved one needs long term care) so you can take time to understand the options available. Even if your loved one is in denial, family members can begin to investigate on their own.

What kind of care is best for you or your loved one? The Alzheimer's Association CareFinder can be a useful tool and will walk you through the following:

■what types of care are available
■how to recognize good care
■what the Alzheimer's Association recommends
■how to decide what care you need
■how to make sure you've found good care

Once again, there are no easy answers, but another valuable resource I must mention is a local support group. Support group participants can share their firsthand experiences with long term care and offer invaluable insight into their journey. More importantly, they can provide the emotional support families need as they navigate this uncharted and unrequested territory." Mayo Clinic Alzheimer's Blog.

The CareFinder tool can be found on the Alzheimer's Association website.

May 6, 2010


"Life shrinks or expands in proportion to one's courage," Anais Nin.

I have given more thought to how we can have autonomy, as described in Outliers by Malcolm Gladwell, for finding meaning in our work as caregivers. One of the best ways, in my opinion, is to thoughtfully decide how we want to deliver our care. Whether being a caretaker was something you chose, something cast upon you, or something in which you feel you did not have a choice, we can decide how we want to show up as caregivers. We can control the quality of the care and the environment in which our care is provided. I think all of us will do the best we can, and I think it is critical that we do not allow the pressure from what seems like the inevitable few to provide our care the way they think we should. Having thoughtfully made the decision of how we want to provide care, and in my case that is: respectfully, collaboratively, and with a sense of meaning; then we need to proceed on our path without the interference of others. One of the best ways to live life well is to seek good cousel; unsought cousel may very well have different motivations for us. If someone truly wants to help, they can offer us respite instead of judgment.

May 5, 2010

Work defined

"How we spend our days is, of course, how we spend our lives," Annie Dillard.

If, as Malcolm Goldwell in Outliers suggests, work is meaningful only if it provides autonomy, complexity and connection between effort and reward, how can we ensure ourselves these qualities as caregivers?

Autonomy: This is difficult, especially if your caregiving is 24/7, but it is important. Ways to continue to have autonomy are to arrange respite care for yourself (more on this topic tomorrow). There may also be times when you are free to do what you want. For instance, while Dwane reads the newspaper, I feel I can leave to do my exercise. Perhaps you are in a situation where leaving at all is not an option. Can a neighbor come for a bit every day? What can we put in place to still have our autonomy?

Complexity: I think we have this in spades. Observing the physical, behavioral and cognitive changes which necessitate changes we can make in the environment. I think we also need to feed our minds with inspiring and thoughtful material through what we read, watch on tv, etc.

Connection between effort and reward: This can be hard too, as it seems dementia diminishes the ability to recognize and appreciate the efforts of others. Perhaps if we consider why we are doing what we are doing, then we can see the reward of our efforts being an appropriate citizen of the universe. How do you find reward for your effort?

May 4, 2010

Continuum of care

The latest Mayo Clinic newsletter has some thoughtful information on levels of care for persons with dementia. The newsletter states that while it may be one's hope to care for the person at home, most people with dementia eventually need more care. At home help includes: respite, adult day services and home health care. Out-of-home services include: assisted living, specialized dementia care and nursing home services. The following is copied out of the Mayo Clinic Newsletter:

"To determine which type of care is best for your loved one, consider the following questions:

■Does your loved one need help preparing meals or taking care of other personal needs?
■Does your loved one need help taking medications or managing other medical problems, such as heart disease or diabetes?
■Does your loved one need 24-hour supervision or special care? If so, what type of skills must a caregiver have to provide that care?
■Would you prefer a facility that specializes in Alzheimer's care?
■How will you cover the costs of your loved one's care?
Keep in mind that some settings aren't designed for people who have Alzheimer's — and as your loved one's needs change, options for care may change as well. Any new care arrangement you make will involve blending your capabilities as a caregiver with your loved one's needs.

Sharing the burden improves care
Remember that seeking help can ease the physical and emotional burdens of caregiving, which benefits both you and your loved one. And the earlier you consider the options, the better. If you wait until a crisis arises, you may be pressured to make a hasty decision. Instead, take time now to evaluate your loved one's future options." Mayo Clinic Housecall

This is very good advice.

Qualities of work

"Those three things --- autonomy, complexity and a connection between effort and reward --- are, most people agree, the three qualities that work has to have if it is to be satisfying," Malcolm Gladwell.

I am just finishing reading, Outliers, by Malcolm Gladwell, and the quotation above struck me. After all, for those of us providing 24/7 care, this is our current work. How can we apply the above quotation to caregivers and care receivers? Let's take care receivers first, and we will address caregivers tomorrow.

Autonomy: How can we provide autonomy for the person for whom we provide care? I look at the environment and make adjustments and supports in ways that can enable him to remain autonomous. Pills in a 7-day dispenser, typed phone numbers posted, typed instructions for how to use the tv/satellite remotes. Having regular schedules helps to support their autonomy.

Complexity: It would seem that the complexity of the world is part of the problem for a person with dementia, but what if we change the meaning to stimulation? If the person likes to read, one can get books or books on tape from the library. Concerts, movies can be enjoyable - either outside the home or on tv. Being included in social events can be uplifting.

Connection between effort and reward: Perhaps this is where positive reinforcement (praise) can come in. Behavioral pyschologists know that the behavior that we pay attention to increases. We can use this knowledge to express gratitude for the types of behavior that enhance their and our own lives. Therefore, their effort is rewarded by our praise and gratitude.

May 3, 2010


"The mind is everything. What you think, you become," the Buddha.

Yesterday's sermon at church was based on, "Love your neighbor as yourself," a basic tenet of many religions. I liked the way neighbor was defined: as anyone you meet on your path in life. That is pretty inclusive, isn't it? That definition rules out excluding anyone from one's kindness. When we think of the command to "Love your neighbor as yourself", we may not consider the importance of that on our own health. The thoughts we choose to have do affect us physically. If we choose thoughts of love and kindness, our bodies respond with relaxation and harmony. If we think thoughts of anger and resentment, our bodies respond with unease - which can lead to dis-ease. To "love your neighbor as yourself" includes how we direct our thoughts to ourselves and one another. Since we know from statistics how challenging it is for one's health to provide care for someone with dementia, it serves us to notice the content of our thoughts and make sure they are loving to ourselves and all others. For our own health, if for no other reason.

May 2, 2010

Controlling our thoughts

"We have a million thoughts going through our heads in any day. The ones we feed will determine the quality of our lives," Dr.Linda McNamar.

It is said that a person cannot control his/her thoughts, but I think that it incorrect. I think we can decide upon the quality of thoughts we want to have by focusing on what is going right in our lives or by focusing on what is going wrong in our lives. Try it and see. Such as with caregiving: what is going really right and easy? It seems to me that there is always some of both, that which is going right and that which is going wrong; and it makes a difference in the quality of my life which I focus on. The same is true for conversations. I avoid negative conversations, as they do not support life and happiness. Instead, I choose to have conversations that are respectful, direct, honest, and kind. It makes a difference.

May 1, 2010


"Quantum physics has shown that the universe is one gigantic energy field that slows down or focuses into various physical forms. Everything is made up of this one universal energy," Dr. Linda McNamar.

Would we live our lives differently if we really believed that we were each part of a whole? Dwane and I are watching Ken Burn's documentary, Elizabeth Cady Stanton and Susan B. Anthony. How hard they worked for suffrage for all, only to have women omitted again. I am so grateful to all the people who have lived who have strived for tolerance and rights for us all. There are still areas in which we can help to bring more empathy and tolerance. One area is how people with dementia are treated. As caregivers, we can influence people to treat those with dementia with courtesy, inclusion and respect. What are some ways you can think of to raise people's awareness in these ways? One of the best ways, I think, is by how we treat all people ourselves, especially the one for whom we provide care. This is sometimes called modeling. We model the behavior we want others to have. It is a powerful behavioral tool.