PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Wednesday, August 31, 2011

What if IT happened to me?

Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.

I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack. 

If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."

It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.

Tuesday, August 23, 2011

Let Go

I have mentioned before that I find great solace in Unity Temple's "Daily Word." Not every day speaks to me but most often it does. I also clarify that I am a spiritual person not a religious person and continue to figure out what this thing called "God" is all about. You will note below that often I "alter" the religious overtones and make them my own. I am able to take the daily word at its word level and often the words make sense to me.

I found this entry a good suggestion for dealing with stressful interactions with Gregory. It addresses "one by one each concern for my life and the lives of my loved ones," which comes in handy, but I apply it instead to the difficulty of the moment and find that I am then able to respond calmly, lovingly, helpfully and not angrily or with frustration.

Try it...
Daily Word: Daily Inspiration From Unity
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Today's Daily Word

Monday, August 22, 2011
LET GO of the moment
I release my concerns, certain of God's good.
Release is an act of confidence, not failure. In times of stress, I take a moment to find the gentle rhythm of my breath. If I feel tension, I relax my body and allow my mind to experience a moment of peace.

I breathe in and out with quiet awareness. On my outward breaths, I release one by one each concern for my life and the lives of my loved ones. On my inward breaths, I accept the assurance of right outcomes.

I let go of my need to control and to know how everything will unfold. New ideas and insights are revealed in divine time and order. I trust myself. I trust in God--the Infinite Source of healing and resolution. I will know what is mine to do, when it is time.
The Lord is good to all, and his compassion is over all that he has made. --Psalm 145:9

Monday, August 22, 2011

Helpful Hints

These hints were taken from Perspectives: A Newsletter for Individuals with Alzheimer's or a Related Disorder. They were told by the person diagnosed with the cognitive imparement. See ordering information at the end of this post.

1) If someone puts me under pressure to remember an appointment, issue, or location of an item, it can almost become impossible to re- trieve the information. I will ask the person to give me some time (not under pressure) and then I can generally respond rather quickly.

2) Friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to re- member your name.

3) Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us.

4)"I find memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live to- day,”

SUBSCRIBE TO Perspectives
The annual cost of four issues of Perspectives by surface mail is a suggested $20.00 donation or FREE by email. Please complete and mail the information below to begin a print subscription, or email to request an electronic subscription.
Name____________________________________________ Address__________________________________________ ________________________________________________ Phone/Email_____________________________________
For surface mail, prepaid orders by check or money order only (payable to UCSD ADRC). International orders must be received payable in U.S. dollars on a U.S. affiliated bank. Please add $2.00 for postage for international subscribers. Mail to:
Lisa Snyder, LCSW
UCSD Shiley-Marcos Alzheimer’s Research Center
9500 Gilman Drive – 0948
La Jolla, CA 92093
Phone: 858-622-5800 Fax: 858-622-1012 email:

9500 Gilman Drive – 0948 La Jolla, CA 92093  

Sunday, August 21, 2011

Tears of Blood

I cry tears of blood
Tears of blood
My crimson shirt conceals
The grief and sorrow.

The tears come easily
Running down my face
Flags of confusion
Banners of loneliness.

With tears of blood, I am undone.

The red of a sunset
The heat of a flame
The sweetness of a blood orange
I am undone.

Saturday, August 20, 2011

Bears and Foxes and Lions, Oh My!

This first part was previously posted on my writer's blog.

When I first started visiting Green Bay Animal Hospital, the two veterinarians who staffed the clinic were Dr. Bear and Dr. Fox. Several years later Dr. Fox went on to open his own clinic and I followed with Hoover and Mariah, our cats. Today I took Mariah in for some bladder infection problems. Dr. Fox was not in and to my surprise, the doctor on duty was Dr. Lions. I love telling people that a bear, a fox, and now a lion take care of our pets.

I am reposting it here because the story takes an interesting turn. I explained to Dr. Lions that Mariah (our cat) has become "cranky" recently and that I have been keeping an eye on this looking at possible bladder infection, or developing arthritis in her hind legs which would also explain her change in toiling habits, namely peeing on the floor around the box and most recently on the bathroom rug.

Dr. Lions explained that this loud crying and "crankiness" could be part of what vets call "Old Age Complaining." Cats with aches and pains, confusion, cognitive changes will just complain. I commented, "Funny. Just what I need is more cognitive changes. About eight years ago, my life partner was diagnosed with young onset Alzheimer's Disease."

She explained that there actually has been some research done on aging cats that shows that there is an Alzheimer's like pathology that can develop.

Bring on the Aricept and Namenda ... or maybe just the antibiotics.

Thursday, August 18, 2011

More lyrics for "Michael's Down Play LIst."

(Ne Me Quitte Pas) (Jacques Brel / Rod McKuen)
Especially as sung by Shirley Horn

If you go away on this summer day Then you might as well take the sun away All the birds that flew in the summer sky When our love was new and our hearts were high When the day was young, and the night was long And the moon stood still for the nightbird's song If you go away, if you go away, if you go away 

But if you stay, I'll make you a day Like no day has been or will be again We'll sail the sun, we'll ride on the rain We'll talk to the trees and worship the wind Then if you go, I'll understand Leave me just enough love to fill up my hand If you go away, if you go away, if you go away

If you go away, as I know you will You must tell the world to stop turning 'til You return again, if you ever do For what good is love without loving you? Can I tell you now, as you turn to go I'll be dying slowly 'til the next hello? If you go away, if you go away, if you go away

But if you stay, I'll make you a night Like no night has been or will be again I'll sail on your smile, I'll ride on your touch I'll talk to your eyes that I love so much But if you go, go! I won't cry Though the good is gone from the word goodbye If you go away, if you go away, if you go away

If you go away, as I know you must There'll be nothing left in the world to trust Just an empty room, full of empty space Like the empty look I see on your face I'd have been the shadow of your shadow If I thought it might have kept me by your side If you go away, if you go away, if you go away

Wednesday, August 17, 2011

Improv for Alzheimer's

From NPR Morning Edition

Improv For Alzheimer's: 'A Sense Of Accomplishment'

August 15, 2011
Many newly diagnosed Alzheimer's patients go through the stressful phase of realizing they are losing their memory while still having enough insight to know that, over time, they will no longer be able to care for themselves.
So a team of researchers from Chicago — a city known for improvisational theater — is testing a new idea of whether unscripted theater games can affect the well-being of these patients.
"Improv is all about being in the moment, which for someone with memory loss, that is a very safe place," says Mary O'Hara, a social worker at the Cognitive Neurology and Alzheimer's Disease Center at Northwestern University's Feinberg School of Medicine. "Maybe thinking about the past and trying to remember makes the person a little anxious or even a bit sad because their memory is failing. And maybe thinking about the future too much is also anxiety-provoking. So being in the moment is such a safe and a good place to be."
"There's no experience required, there's no script, there's no memorization," O'Hara says. "They bring to it just their creative potential. And they are so successful at this."The Northwestern researchers are working with the Tony Award-winning Lookingglass Theatre Company. There are already theater programs that use improv for Alzheimer's patients in the later stages of the disease, but this collaboration is unique because it's for early-stage patients.
Christine Mary Dunford, with Lookingglass, leads the group of novice performers in very simple improv games.
One "of the basic tenets of improv that [is] perfect for working with people with dementia [is] the concept of yes," Dunford says. "So, fundamental to all our work is that whatever answer someone comes up with, the rest of us are going to be able to work with it."
Researchers don't expect these games to stop or slow the progress of Alzheimer's disease, but they are investigating whether engaging the creative abilities of these early-stage patients improves their lives.
Before and after the eight-week program, participants and their families are asked a series of questions, checking to see how the course changes their answers.
"We're asking people to tell us how they're feeling about their physical health, their mood," says Darby Morhardt, a research associate professor at Northwestern. "How do they feel about their memory? How did they feel about their family, about their relationships? And also, how do they feel about their current situation as a whole and their life as a whole?"
"When we think of people with Alzheimer's and other dementia, we think about people who are losing skills on a daily basis," says improv coach Dunford. "But here, they're learning some new things, too.
It gives them a feeling of — a sense of self-confidence that they were able to accomplish this. And in this disease, there's not a lot of opportunity to feel a sense of accomplishment."

Tuesday, August 16, 2011

Without Warning

A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.

No Day But Today

Every now and then I find a song that I add to "Michael's Down" playlist on my iTunes. When I get depressed or down and feel the need for a really good cry, I turn up the speakers, play the tunes on my playlist. Usually I do this when Gregory is out for his daily walk. It gives me the space to grieve without making him feel badly. Sometimes I will go out for a walk - ear buds plugged in, iPhone in pocket, tears in eyes. If it gets bad enough I blast the speakers while he is home. He gives me my space and afterwards we hug and "make up." Sometimes we share a tear or two. I try not to do the later too often because it feels like my being down is punishing him. But he knows I get sad and it is better to admit it out loud than trying to cover my feelings with him knowing anyway. Here are the lyrics from one such song. Will share more in future blogs.

No Day But Today
Sung by Idina Menzel

There’s only us, there’s only this
Forget, regret, or life is yours to miss
No other path, no other way
No day but today

There’s only us, only tonight
We must let go to know what’s right
No other road, No other way
No day but today

I can’t control my destiny
I trust my soul, my only goal
Is just to be

There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today

There’s only us, There’s only this
Forget, regret, or life is your’s to miss
No other road, no other way 
No day but today

No day but today
(No day but today)
No day but today
(No day but today)
No day but today
(No day but today)
No day but today

Tuesday, August 9, 2011

End, Begin, End, Begin ... Change and Change Again.

This blog was written last Saturday after a very difficult day. I knew I would have to sit on it for a day or two and am glad I did. The purpose was to get it all "off my chest." Having written it was a way of putting it to sleep for a while, giving me time to process. By Monday I am doing much better and realized that through my frustration and impatience, I had lost myself ... not Gregory. I am found and things are working again, for a while. I have been able to come back from "black and white" and lead my life with Gregory in "shades of gray" again. I have been able to reform my thinking, again, and our life is good. Welcome home.

Today has been a day of everything not working. For the most part I have been supportive but by dinner time I lost it. Twice today, when he couldn't do something, after several failed attempts at my trying to help, I just nicely took over and did it myself. Or I just paused to give him space to think something though.

Both times he got upset and accused me (although gently) of being inappropriate. "Why are you doing this?" "What are you trying to do to me?" And this doesn't take into account the other dozen or so interactions/activities that didn't work. That I didn't know how to deal with or react to.

While I know it's the Alzheimer's, it still hurts and I take it personally. If only because I was not only trying to be supportive, but I was being careful to be loving and not make him feel bad and it still didn't work. His reply several times was, "Now I know." But I know that he may or may not "know" the next time. Crap shoot! Throw of the dice.

Tonight I have decided that I am divorcing the old Gregory while I continue to live with and support the new, unfamiliar one. The Gregory I love is dead. I am killing the illusion. Until now I have behaved as if there was still a relationship. Now it seems as though there is nothing to relate to.

The responsibility to the new Gregory will continue but I will no longer ask his help for ANYTHING because I do not know when it will backfire on me and I can no longer take the emotional risk. If he feels bad that I do not ask for his help, if he feels useless, I cannot help it.

And to save me from these blows, I will not tell him of or discuss the changes anymore. I will just make them. Instead of saying, "Hon, let me do the water for dinner from now on." because he gets so confused doing them, I will just not ask and do it myself. I used to explain changes saying that it might be better for me to take over with this or that, but now I will just do it with no more explaining. No announcement, no explanation, no warning, NO APOLOGIES.

He continues to want to know, to understand, to learn. But he is not capable of it and I am not capable of supporting an impossible situation. I will just do it for him.

If I am going to be living in a one-sided relationship then I am going to have to make all the decisions and live my way. I can no longer take him or his feelings into account. I will not be mean or rude or disrespectful but I will have to begin treating him like the new person he has become.

This new stance may make him feel bad but "bad" is how it seems to be most of the time now. I can no longer try to anticipate and make it all OK. It is NOT OK. Never will be again. I give up the old ways. I forge a new way for myself and must leave him behind. I try to forgive myself and him. I cannot worry about what will be good for him except to keep him safe from harm, fed, clothed, and now and then entertained.

I cannot begin to tell you how lonely and sad I feel. How alone. How alone even with all those around who support and love us, so alone. Maybe this is just a rant. Maybe it will be different later. Maybe not. Maybe nothing has changed except I am seeing things differently. But somehow I need to change or I will not survive this. Maybe. I hope I can be strong enough to begin this new life.

Again, the above italicized text has passed and I do not feel the need to be so extreme in my thinking but it did help to get it off my check and move on.

Thursday, August 4, 2011

Hearing vs Listening

I have found that The Daily Word from Unity Temple, has been very helpful in my spiritual quest and supporting me as I deal with Gregory's Alzheimer's. Today's passage reads:

"I rely on my ears to hear, but my heart to listen. When someone speaks to me, I not only hear the words, but with focused attention, I truly listen to what they are saying and the feelings they are expressing. I am an active and attentive listener, asking for clarification to help me understand. I listen this way because I know what it means to be heard."

More and more, as Gregory continues to loose words and language, I find myself listening with my heart to his attempts to communicate. I know him and our life well enough, that I am often able to "know" what he is trying to say. Other times I haven't the foggiest. This is when it takes more patience on my part and I really must listen with my heart.

Lately, I find that while I am waiting attentively, with an interested look on my face, while he is trying to formulate his thoughts, in my mind I quietly send LOVE to him. This helps me maintain my patience and calm my frustration and sometimes anger.

So many lessons.

Unity's Daily Word Magazine