Apr 30, 2011

Moving

"All good things come to an end." familiar quote.

Today we are moving back up to the high country. It has been stressful getting everything done to move. In addition to everything one must do to move, Dwane has had a significant toe infection that has taken trips to the doctor and pharmacy, but the good news of that is the doctor fit him with a device that prevents his toe from hitting the ground so hard. I am so grateful for this lovely home where we have taken respite from the heavy snowfalls. Still, it will be good to be "home" to the peace, beauty and solitude of the high country.

Apr 29, 2011

Brain and exercise

"Could exercising regularly and not smoking help to delay dementia?" Scientific American, Dec. 2010.

We who are in the midst of dementia caregiving can no longer delay dementia for the person for whom we provide care, but we can support their overall health and we can take care of our own health. Research from Group Health Research Institute in Seattle has found in the brains of people with dementia evidence of very tiny strokes -- strokes so small they can only be detected after death. This leads researchers to consider whether dementia might be caused by the tiny strokes. At this point it is impossible to say if the tiny strokes cause dementia, co-exist with dementia or are unrelated. But, it may bring new treatment and prevention with early cardiovascular treatment to prevent the microinfarcts (strokes).

Apr 28, 2011

More memory tips for caregivers

"It is normal to be forgetful once in awhile, especially if you've got a lot on your plate," Danielle Braff, Health May 2011.

And who has more on their plate than dementia caregivers?! Remembering for two, doing all tasks for two, monitoring medications and medical appointments, house and yardwork, laundry, etc, etc, etc. So, some ideas to help us keep our cognitive abilities: eat carbohydrates for breakfast which are converted in our bodies to glucose which the brain needs; exercise regularly using a routine that requires you to remember; change the font on your computer to challenge your brain; do a web search for something you are interested in; build your memory capacity by noticing where you parked your car/then move your eyes side-to-side every 1/2 second for 30 seconds; drink alcohol moderately (for women that is one drink or less per day); floss before bed as gum bacteria can cause brain inflammation. Together we can keep our health; both cognitive and physical.

Apr 27, 2011

Memory tips

"If your risk factors for disease are controlled -- blood pressure, blood glucose, chronic stress -- then 30 minutes of aerobic exercise at least five days a week is one of the most effective ways to keep your brain sharp," Nancy Johnson, PhD, assistant professor of psychiatry at Northwestern University, Evanston, IL.

As dementia caregivers we really are now remembering for two of us. I find I am checking to make sure lights, water taps, etc. are turned off -- as we have reached the stage of dementia where these are occurring more often. That is on top of remembering his medications, our appointments, all the bill paying, when to service the car, etc. So, how do we help our own memories? In addition to the above good suggestion, plenty of rest, putting things in the same spot all the time, good nutrition and stress relieving strategies are helpful. It is imperative that we take good care of ourselves, and our own memory is one of the things to protect and nurture.

Apr 26, 2011

Hopeful research

"Every 69 seconds another person develops Alzheimer's disease," Dr. Richard Besser.

ABC news presented two hopeful bits of research. In the first, a gene has been identified which may predict if a person will get Alzheimer's disease; thus making early intervention possible. The second news was the research being done on diets that help people with epilepsy. High fat diets - cream, butter, meat and no carbohydrates - has cured some people of epilepsy. What works for this brain-related condition may offer help for people with dementia. Worth following this research.

Apr 25, 2011

Simplicity

"Simplicity and repose are the qualities that measure the true value of any work of art," Frank Lloyd Wright.

Simplicity and repose (if one considers the definition of repose as: peace of mind) are also important qualities for us as caregivers and for the environments we create. I find I am always looking for ways to make something simpler - replacing three tv remotes with one, putting pills in an organized system, having things in a predictable place. When I am able to keep things simple, then both Dwane and I do have peace of mind. Things go smoothly. Harmony presides.

Apr 24, 2011

Creating safe environments

"Alzheimer's disease impairs judgment and problem-solving skills, increasing your loved one's risk of injury. To keep your loved one safe:" Mayo Clinic

Like Alzheimer's disease, Lewy Bodies Dementia causes a person to have reduced judgment and problem-solving skills, but there is also significant motor skill involvement. It is important to prevent falls. Throw rugs may need to be removed. Sturdy and supportive shoes are important, as is walking slowly with your care receiver. Some of the things recommended to someone with Alzheimer's disease may not fit for someone with Lewy Bodies Dementia; for instance, their recommendation to change locks on doors -- we don't need to worry about wandering. I make sure that we have plenty of night lights for visibility at night, and I don't rearrange furniture - I want to maintain predictable traffic patterns.

Apr 23, 2011

More management tips

"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:" (Mayo Clinic Staff)

4. Limit choices: This is a management technique used by educators and parents who want to avoid a power struggle. Give the person two choices, such as, would you like to brush your teeth before or after your bath?
5. Provide simple instructions. Mayo Clinic suggests giving just one step of an instruction at a time. You will know what works best for your care receiver; just remember that comprehending and using language is greatly compromised.
6. Reduce distractions. I find that it is important that I have Dwane's full attention if I want a conversation.

Apr 22, 2011

Caregiving tips

"Alzheimer's caregiving takes patience and flexibility. To reduce frustration, consider these tips for daily tasks — from limiting choices and reducing distractions to creating a safe environment." By Mayo Clinic staff

Good advice in the most recent Mayo Clinic Alzheimer's Newsletter. Their suggestions are:

1. Schedule wisely. Establish a predictable routine. That is one of the best behavior management techniques I know of: structuring the environment and having a predictable routine to prevent confusion and to promote things going smoothly. They also recommend that we plan activities during the day at the times that best meet your care receiver's needs.
2. Allow plenty of time. Every activity with someone with dementia seems to take about four times longer than it used to take. So, allow plenty of time.
3. Involve your loved one: I call this fostering independence. Have systems in place which allow as much independence as possible, such as laying out clothes but allowing the person to dress him/herself.

Apr 21, 2011

Being true to oneself

"How difficult it is to avoid having a special standard for oneself," C. S. Lewis.

As dementia caregivers we have undoubtedly seen around us people who have handled caregiving both well and not so well. This is a very difficult task: providing caregiving for someone with dementia. Let us be realistic that it is truly very difficult, and let us intend to do this task in the way we want. It is possible. With support and with having a very clear intention of how we want to "be" in the caregiving task, we can see ourselves in the role in the ways we want to be. Sometimes people fall short in their behaviors, and that is human. What is to be avoided is not taking responsibility for falling short. At recent workshop I went to on Understanding Personality Disorders, the presenter said that one of the main differences between those of us who have mental health and those who do not is: taking responsibility for ourselves and choosing among the options we have.

Apr 20, 2011

Social support

"You get more than just a little help from your friends, you get good health too, IF you have the right ones," Brigham Young University study (Prevention Magazine May 2011).

This article reminds us that a strong social network, with healthy people, improves our chances of living longer by 50%. It doubles one's chance to fight off colds and even to survive cancer. Lead study author Julianne Holt-Lunstad, PhD. says that not having close friends is as bad for us as smoking 15 cigarettes a day. I believe this is true, as long as one's friends are truly supportive. For me that means that they listen as much as they talk, they implement positive thinking into their lives, and that they truly want the best for themselves and others.

With the isolation of being a dementia caregiver, it is important to cultivate those types of friendships. I find that phone conversations with truly loving friends helps fill the void in my life. How do you find and maintain supportive friendships?

Apr 19, 2011

Loving

"Loving can cost a lot, but not loving always costs more," Merle Shain.

That seems true. We can hold back our positive regard for ourselves and others, we can choose to be stingy with kindness and attention; but there will be a cost. Karma does seem to be a law in effect in our universe. We may not get tit for tat, but goodness begets goodness; while the converse is also true. Another way of saying that in behavioral psychological terms is that we will reap the consequences of our behavior. If not in like coming to us from an exterior source, it will be reflected in the health of our own bodies. Today what is one act of kindness you can do for yourself and for one other person?

Apr 18, 2011

Fear

"The only thing we have to fear is fear itself - nameless, unreasoning, unjustified, terror which paralyzes needed efforts to convert retreat into advance."
---- FDR - First Inaugural Address, March 4, 1933

Some current spiritual thinkers say there is only fear and love. We either are choosing our thoughts and behaviors on fear -- or on love. If that is the case, what do we want our thoughts and actions to be as dementia caregivers? There is much to fear if we focus on this progressive and terminal illness: steady but erratic decline in cognitive/physical/motor skills, increased isolation, increased responsibility for us as caregivers. If we look down the road, there may be much to fear. But, what about today? Are you managing things to your satisfaction today? Are you free from catastrophe? Are you and the person for whom you provide care safe, fed, sheltered? Chances are that this moment you are okay. Why not believe that is true for the tomorrows as well? All is well. That is a mantra I have when I feel overwhelmed or distressed.

Apr 17, 2011

Holy Week

"A moral being is one who is capable of reflecting on his past actions and their motives," Charles Darwin.

Today Christians worldwide enter Holy Week, the time between Palm Sunday and Easter Sunday -- a week to commemorate the final days of Jesus on earth. This is the time of year for holy celebrations in other major faiths, such as Passover. It is a good time to reflect on our past actions and how they have affected ourselves and others. It is also a time to consider what motivates us. Is it revenge, power, control, accomplishment, service, kindness? Why are you providing caregiving to someone with dementia? It is important to be conscious about what motivates us.

Apr 16, 2011

Amusement

"A recent study from Northwestern and Drexel universities found that people are more likely to have that elusive "Aha!" moment - the spark of creative problem-solving that seems to come out of nowhere - when they're amused," Prevention May 2011.

Another study which supports the desirability of laughing every day. "A positive state of mind increases the likelihood of a creative insight," John Kounios of Drexel University. The article in the Prevention Magazine goes on to say that the average woman laughs 17 times a day. Perhaps within the responsibilities that a dementia caregiver has, you find it hard to laugh 17 times a day. What can we implement in order to laugh? Laughter helps relieve stress and lowers blood pressure. What funny movie can you watch tonight?

Apr 15, 2011

Alzheimer's Cafe'

"Nova Scotia recently added a special kind of cafe' among its many -- one designed to meet the needs of people with Alzheimer's disease," AARP. April 2011

What a great idea. An informal place where people with dementia and their caregivers can gather to share ideas and support. Our area does not have this type of cafe', but we can try to do the same gathering and supporting each other via this and other blogs and online newsletters. Or, we can start a dementia cafe' in our own area. There is a support group that meets in our area, but it is only for caregivers -- which intrigues me. What do they (it is government sponsored) think we are going to do with the care receiver for 2 hours?! Seems so much better to me for there to be a support group in which both caregiver and care receiver could meet, or at lest, an option for both to attend.

Apr 14, 2011

Support in writing

"I realize, as I know most of you do as well, that we cope with a disease like Alzheimer's not so much by what modern medicine can give us, but by what we give and receive from one another," Mayo Clinic Alzheimer's Newsletter.

This most recent Mayo Clinic Alzheimer's Newsletter states that supporting one another is key to surviving this illness, and that forms of writing and blogs can be part of that support. It is my hope that this blog is a source of support for those people living with someone with dementia or other terminal illness. Together we can have the courage to face this in the way we prefer.

Apr 13, 2011

Soul work

"Silence is the soul's oxygen," Caroline Myss.

I am reading "Entering the Castle: An Inner Path to God and Your Soul," by Caroline Myss, recommended by a friend. I had read, "Interior Castle" by Teresa of Avila in the 1970's; the book upon which Myss's book is based. It has occurred to me that while we are dementia caregivers, and perhaps more removed from the world, why not use this time to devote to our spiritual growth. Lots of food for thought in "Entering the Castle", which is nicely ecumenical. This time will pass one way or another. Working on our own human/spiritual potential is one way to make use of this time.

Apr 12, 2011

Clocks

"Time is free, but it's priceless," Harvey MacKay.

What is it with clocks and people with dementia? I know that one of the tests for cognitive functioning is to have the person draw a clock and then put hands in for certain times; a task Dwane was unable to do. I have bought him the simplest alarm clock I could find, and I set it for him. But, still, the alarm goes off at 3:27 a.m. or 5:00 p.m. He continually tries to reset the alarm himself; invariably getting it wrong. OMG this is frustrating! What have you tried that works with clocks/alarms? It is not only frustrating that he will not leave it set as I have done according to what time he says he wants to get up, but he will never take responsibility for doing it incorrectly! It is always something wrong with the clock. Or the remote control. Or the gas pump. What is it about dementia that disables a person from seeing that he/she is doing a wrong application, versus the device not working?! (If he was able to see that he was incorrectly applying a technique, perhaps he would be able to try a different approach.)

I welcome any constructive suggestions.

Apr 11, 2011

Play date

“You can discover more about a person in an hour of play than in a year of conversation.” Plato

For our "play date" this week we tried a new restaurant that a local food editor had featured, then we drove through a wildlife park - seeing the first bison calf of the season (delightful), then went swimming in a hot mineral spring water pool. The water in this pool has been believed over the decades to be healing because of the temperature and the mineral content. A fun day. We both came home tired and watched the next segment of "The Kennedys" after dinner. It is so important for us to take time out of the tasks to insure fun. What are some things you can still do with your care receiver? I try to pick things that both he and I, as dementia caregiver, will enjoy.

Apr 10, 2011

Our actions

"Preach the gospel at all times. If necessary, use words," St. Francis.

An amusing quote to underline the importance of our actions. Talk is irrelevant if not followed up by congruent action. Talk is also easier than action; that probably explains why people make so many plans, but fail to follow through with them. In providing caregiving for dementia it is important that we have an intention for how we want to "show up" minute by minute. But this intention is worthless if it is not followed by actions that are congruent with that intention. For myself, I find that having the intention to provide dementia caregiving graciously, is like a gps which enables me to have my actions follow that intention.

What works for you to enable your actions to be congruent with your intentions?

Apr 9, 2011

Tips for our own brains

"Swedish and Finnish researchers found that moderate coffee consumption (3-5 cups a day) cuts dementia risk 65%. Good Housekeeping October 2010

This article also suggests one keeps an eye on cholesterol. High cholesterol levels in one's forties increased the risk of developing Alzheimer's. A study done at the University College London has revealed that high HDL levels of cholesterol (the "good" kind) also is a protective factor for maintaining memory and cognitive functioning. Obesity increases dementia risk by 80% according to research done at Johns Hopkins.

All supportive information for us as dementia caregivers in protecting our own health.

Apr 8, 2011

Compassion

"Our human relationships are a playground where we learn tolerance, compassion, and acceptance." Chris Michaels.

Tolerance, compassion and acceptance are qualities we can learn as dementia caregivers. We could also choose to learn bitterness, self pity and scorn. The choice is ours. One thing seems certain: the stress and sacrifice of providing caregiving for someone with dementia provide fertile ground for developing our own character. I have thought for years that adversity either makes us bitter or better. Let us choose to use this experience of dementia caregiving to transform us into new levels of tolerance, compassion and acceptance. Let us also consider this is our playground for such developing. It has seemed to me that the interactions, dynamics and choices of the childhood playground do play out over and over throughout our lives. Let us choose to become better persons from this experience. Personality qualities, like muscles, become stronger with use. Today let us exercise the muscles of tolerance, patience, playfulness, compassion, self- and other-acceptance.

Apr 7, 2011

Self regard

"Friendship with oneself is very important because without it one cannot be friends with anyone else in the world." Eleanor Roosevelt

The above statement seems very true to me. Our society seems to vacillate between hammering one's self esteem and distorting it by exaggerated ways to bolster it. Recent research has delved into the practice in schools and communities over recent decades of the emphasis on building up children's self esteem to an exaggerated degree. But, if you were born during earlier eras, as I was, then you probably were someone who experienced society's damaging impact on how you felt about yourself. So, repair we must. Positive self regard is imperative before we can truly have regard for others. The more we love and accept ourselves for who we are, the better we will be for others. During this time of providing dementia caregiving, let us not forget to honor ourselves, to love ourselves. What about yourself in your capacity as dementia caregiver do you most admire? That is a good place to start.

Apr 6, 2011

His perspective

"Practicing kindness toward ourselves, we begin to think and act with greater kindness toward others," Dr. Joan Borysenko.

Readers sometimes say they would like me to write from Dwane's perspective, but, of course, that is impossible. We can never know what it is like to be in someone else's skin. But, with my trained observational skills as a psychologist, I can sometimes catch glimmers, and sometimes Dwane shares a bit of perspective --- like when he said last fall that he did not think he would be alive in three years. In observations: he wanted to go to a big lumber/household furnishings store to get a door. I decided just to let him take the lead. He went to the bathroom section and wandered and wandered among the bathtubs, sinks, etc. When I asked him where he was going, he seemed to think that the doors used to be sold in that area. I don't think that is correct, but it doesn't really matter. What was interesting to me is that he never stopped and asked one of the plentiful clerks for assistance, he did not appear to look at the big signs hanging from the ceiling, he did not seem to comprehend that interior doors would not be among bathtubs and sinks. It was like the time he was lost for 45 minutes on the cruise ship. I think he would have wandered indefinitely if I had not intervened. This is not the same wandering as one sees in Alzheimer's patients, where they are lost. It is a matter of being unable to make judgments and plan accordingly. Interesting.

Apr 5, 2011

Patience

"Patience is related to authentic spiritual courage. All we can do is act with integrity, in accordance with our priorities and the guidance of the still, small voice within." Dr. Joan Borysenko.

Perhaps other dementia caregivers are gifted with abundant patience. My natural pace is efficient and quick. It is so difficult to adjust to the pace that Dwane now needs. Getting in and out of a car, moving into any building, getting ready to go: all seem to take forever. Even clasping his seat belt. I try to slow down, and even better, I try to give him enough "heads-up" so that he can be ready when we need to go. He has never been spontaneous, but now needs lots of time to assimilate.

How do you find the patience needed in your caregiving capacity?

Apr 4, 2011

New Pedometer

"Middle-aged women and men who exercise five to six times a week (brisk walking is okay) are far less likely to develop mild cognitive impairment later in life," Good Housekeeping October 2010.

I have had the discipline for some years of wearing a pedometer to enable me to get the 10,000 daily steps that various health sources advocate we get. For a few months I have not worn one because I did not like the last one I bought. Recently I bought a new one which I love: Omron model HJ-150. What do I love about it? It is simple to use (do not have to measure stride, etc; it just keeps track of steps), easy to wear, and supports my health. (I bought mine at a large drugstore chain.)

Perhaps you are wondering what a new pedometer has to do with being a dementia caregiver. There are several applications: The pedometer helps me to know that I am doing what I intend to do, just as having an intention of living graciously with dementia helps me do the caregiving task with the intention I want. This pedometer is simple and easy to use; just as I want simple and easy systems of support in being a dementia caregiver. Without the pedometer I was not having as much body activity as I intend to have. Without having a conscious intention of how we want to be within the caregiver role, it is easy to get lost in the tasks and lose sight of how we want to "be".

What systems do you have that enable you to provide dementia caregiving in the way you want?

Apr 3, 2011

We are our thoughts

"Your most valuable asset is your mind. And your most important activity is how to use it." Chris Michaels.

I believe the above statement is very true. We are familiar with the expression: you are what you eat. Equally true; we are what we think. It is important to me that my exterior world (of conversations, books, television, movies) supports well being; just as it is important for me to monitor my own thoughts to support the well being of myself and others.

Last night we went to the Telluride Film Festival. Both Dwane and I love to travel, and we cannot do that much any more, so we went to see films of places we have been or might like to go. Fly fishing in remote parts of Russia brought back to us memories of when we were in Russia. Skiing the glaciers in New Zealand, a singing group of disabled persons in Africa, how climate change is affecting skiing in Scotland: were topics covered in the films.

In what ways can you still provide stimulation and entertainment for you and your care receiver?

Apr 2, 2011

Play dates

"People rarely succeed unless they have fun in what they are doing." Dale Carnegie

Great advice for those of us who are dementia caregivers. I have re-instituted our "play dates". They were postponed for awhile when I dealt with the flu virus and got our income taxes done. Yesterday we went out for breakfast to one of our favorite places. Then we went to a coin dealer to find out the value of some old coins we had, then to an antique mall to browse, then to the library. Dwane does not have the stamina to walk or stand for long; it causes him so much back pain. But we did manage these events with breaks that gave him a chance to sit. There is so much we cannot do any more, but it taps my creativity to think of things that are still possible. Tonight: the opera. What can you still do for fun with the person for whom you provide care?

Apr 1, 2011

Sacred communication

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

Communication is so important to me that I have the above quote at the bottom of every email I send. I thrive on communication that is sacred. And what makes communication sacred? Confidentiality for sure. Knowing that we are with a person who will honor what we share and not share it with others. Give and take: An equal amount of talking and listening. Holding what is said as sacred: Persons who listen with so much acceptance that we know they want what is best for us/that they are rooting for us (how healing that is!). Positive topics: Avoiding gossip, negativity, mean spiritedness, put downs, sarcasm.

As dementia caregivers it is important for us to find sacred conversation to support us, especially during this time of sacrifice where we put so much of our energy into the well being of the care receiver. I appreciate every person who provides this for me.