Helpful tips on talking with a caregiver

I have been living with dementia for over a year now, and I want to give some tips for how to handle this conversation with the person giving the care for someone with dementia or any terminal illness. These suggestions are not so different from the skills taught in my award-winning social skills curriculum.

What to do:

• When told, say, "I am so sorry." or words to that effect
• Listen.
• Do ask, "How is it going?"
• Do ask, "How is (name of person with illness) doing?"
• Do ask, "How can I be of support?"

What NOT to do:

• Do not presume you know what the caregiver is experiencing even if you have lived with a terminal illness yourself.
• Do not give unsolicited advice.
• Do not avoid asking how things are going.
• Do not say nothing if the caregiver says something to you. At least say, "I'm sorry to hear that." or some appropriate comment.
• If you are unwilling to listen, tell the caregiver. What are you willing to do?
• Don't presume that every type of dementia offers the same experience. Ask, "What is most difficult for you?" or words to that effect.

Living with dementia is difficult enough on its own without the added burden of people presuming what I am experiencing. Thank you for listening.

A period of well-being

One of the most notable characteristics of Dementia with Lewy Bodies is the extreme variability in lucidity. Having said that, we have had a period now for several weeks where Dwane is doing much better cognitively. He is sometimes able to use the tv remote to find the game he wants to watch, he does some household chores such as emptying the dishwasher and setting the table while I am preparing dinner, and he even helped by putting stamps on the envelopes the last time I paid bills. He had not helped in any aspect with bill paying for over a year. Sometimes it is hard to remember that this is a terminal illness. Because of the extreme variability in lucidity we had experienced for over a year, I notice I keep waiting for the other shoe to drop. Everything I have read says this good period of functioning cannot continue. I want to enjoy it while it does. He has been on medication for dementia for over one year, so it does not seem that the medication could be helping more just in recent weeks. I had thought he was better because of looking forward to seeing his daughter and family, but his good functioning continues. Inexplicable. The other good periods we have had lasted for a few hours or few days. My intention is to enjoy this period of good functioning.

Mayo news

In the Mayo Breakthrough Bulletin, just received, they speak of new research they are doing which "chews up" the A-beta (a protein) that forms plaque in the brains of people with Alzheimer's Disease. While Dementia with Lewy Bodies is not the same as Alzheimer's Disease, this is hopeful research for us all. Previously medication has been aimed at stopping the production of these proteins. This new approach is aimed at breaking up the plaque already deposited in the brain. Very exciting. This bulletin is also a plea for money to help with the research. If you would like to help advance this research, send a check to: 2009 Alzheimer's Drive, Department of Development, Mayo Clinic, PO Box 450, Albert Lea, MN 56007-9849.

More on kindness

Mahatma Gandhi said, "As human beings, our greatness lies not so much in being able to remake the world - that is the myth of the atomic age - as in being able to remake ourselves."

This seems true for me. For several decades the most important intention I have had is to develop to my full potential. That is why I am seeking to find meaning and purpose in living with someone who has dementia. I think the situations we encounter in life are fodder for growth, which makes us either better persons or bitter persons. I also think I have a responsibility for how I treat others. There is the most amazing research well documented in psychology that it only takes one caring adult to have a special interest in a child, for that child to achieve his/her potential -- instead of going the other direction into misbehavior, etc. I don't have the research to support this, but my hunch is that the benefit of this caring attention is not restricted to just children.

Since we learned yesterday the benefits of acts of kindness upon oneself and others, it is certainly worth practicing kindness as a habit, as an opportunity to "remake ourselves".

Acts of Kindness

"Man did not weave the web of life; he is merely a strand in it. Whatever he does to the web, he does to himself," Chief Seattle. Such wisdom expressed long before the effects of acts of kindness has been proven over and over in research projects.

Author Deb Sandella cites one research project where people are shown movies in which Mother Theresa is ministering to the poor of India. During and after watching such movies, the peoples' immune systems improved. This was true for everyone; even young school boys who acted silly during the movie. There have been many other research projects that show our actions affect others, and that acts of kindness - even if we are not the ones performing the kindness - affect our bodies in positive ways.

On Monday I gave a presentation to school personnel. As part of that presentation I included how to create an environment of tolerance and hope in schools. Acts of kindness demonstrated by the adults in the school do impact the environment and how the students act toward themselves and one another. Research has also demonstrated that a person's self esteem is increased by contributing to and helping others.

Many reasons to practice kindness: When we are kind to others, we also benefit. Perhaps this can give an extra layer of meaning to people who are giving care to someone with a terminal illness.

Music Therapy

The Wall Street Journal has an article in its November 17, 2009, issue on the effectiveness of music in unlocking memories in people who have Alzheimer's Disease and other memory problems. While I don't think this would be particularly helpful for the type of dementia we are dealing with, Dementia with Lewy Bodies, I wanted to pass it along for others. In studies of the brain the medial prefrontal cortex appears to be the site where music, memories and emotions meet; and this research indicates that this region of the brain is one of the last to atrophy in people with Alzheimer's Disease. This is not true of Dementia with Lewy Bodies, or at least the manifestation of Dwane's dementia, which is in the frontal lobes. But for anyone with the memory difficulties that accompany many forms of dementia, music may help. The article even suggest particular titles, from the Institute for Music and Neurological Function.

"Fever" by Peggy Lee, "Dawn" by Frankie Valli & Four Seasons, "Unforgettable" by Nat King Cole to name a few. The article suggest loading favorite songs, or these songs from their list, onto ipods so that people with memory problems can listen to them. Personalized music therapy for one hour, three times a week, improved scores on cognitive functioning tests by 50%. It is certainly worth investigating. The article can be read online, "A Key for Unlocking Memories" WSJ, 11/17/09.

Developing oneself

The Beetles' song from the sixties has a line I love. "Nothing you can do, but learn how to be you." From All You Need Is Love. A friend was telling me about someone who, by her description, is excessively controlling. Controlling behavior is common and seems based upon fear of exposing ourselves as we really are. It is a rather natural reaction when someone does not feel safe, but it does not serve to develop intimacy. This line from the Beetles' song puts things into perspective. There really is nothing for us to do in life, except to develop who we are completely. What a journey!