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.
Wednesday, August 31, 2011
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...
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...
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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,”
9500 Gilman Drive – 0948 La Jolla, CA 92093
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 lsnyder@ucsd.edu 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: lsnyder@ucsd.edu
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 lsnyder@ucsd.edu 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: lsnyder@ucsd.edu
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.
Unnoticed
Unrequited
Unreciprocated
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.
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.
Unnoticed
Unrequited
Unreciprocated
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.
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."
IF YOU GO AWAY
(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
IF YOU GO AWAY
(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'
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
From RENT
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
No Day But Today
From RENT
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.
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
"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
Thursday, July 28, 2011
Rage
RAGE: A Poem
I rage.
Over what?
The inability to cope,
With his disease.
He doesn't.
Over what?
The inability.
The inability.
An almost smashed cabinet door.
An almost smashed coffee cup.
At least inanimate objects.
At least almost.
They say when at the bottom,
Lessons can be learned.
Is rage the bottom?
When will I learn?
FLASH POETRY VERSION (10 words:)
I rage
He doesn't
I rage
He forgives
He forgives.
I rage.
Over what?
The inability to cope,
With his disease.
He doesn't.
Over what?
The inability.
The inability.
An almost smashed cabinet door.
An almost smashed coffee cup.
At least inanimate objects.
At least almost.
They say when at the bottom,
Lessons can be learned.
Is rage the bottom?
When will I learn?
FLASH POETRY VERSION (10 words:)
I rage
He doesn't
I rage
He forgives
He forgives.
Wednesday, July 27, 2011
Escape
When I tell my therapist that sometimes I feel like I cannot ESCAPE the 360 of caregiving for Gregory, he helps me reword it. He says that if I was trying to escape I wouldn't be sticking it out and I wouldn't be giving my all to keep Gregory safe, content, and to maintain purpose in his life.
Perhaps what I am looking for is just a "little time away" without the caregiving sitting in a little corner of my mind needing attention. I have slowly learned to find those free moments and recognize them when they do arrive. More later.
When I leave him alone I trust he will do well (and I will continue to leave him until he does not do well) but I call in to see how he's doing. Or he can still call me when he gets into trouble. Before I leave I have to set up his meal.
When he is with me I monitor his whereabouts and sometimes have to coach his behavior. I help him choose clothes and notice the weather. I double check that his cell phone is on and that his pockets are filled. We bring water for the car. I make sure a jacket is with us if it might be cool or air conditioned. I order for him at the restaurant,
When we are fast asleep, like the good mother who knows when the new baby needs her, I am instantly awake when he needs me. Through my own exhaustion I soothe his nightmares, help calm his hallucinations, double check to make sure he is just up to the bathroom or that he does get up to the bathroom so as not to wet the bed.
I organize outings with friends and organize parties in our home because he thrives on being with people. I do all the planning, the work, and the clean up. But worth it because he loves it. We also go to movies, theater, field trips, museums, etc.
I have learned to search out those "time away" moments and to see them when they do arrive. When he is fast asleep, I am free. When he is reading in the living room, I am free. When I get involved in a good book or movie, I am free. When I go for a walk by myself and notice the flowers, I am free. When I get an hour massage, I am free. When I am holding his hand, I am free. When I remember that I do all of this out of love, I AM FREE!
Tuesday, July 19, 2011
I Have Lost Myself
SPOILER: HEAVY READING AHEAD...
In 1996, Dr. Konrad Maurer and his colleagues, Drs. Volk and Gerbaldo, rediscovered the medical record of Auguste Deter. In it Dr. Alzheimer had recorded his examination of his patient,
- "What is your name?“
- "Auguste.“
- "Family name?“
- "Auguste.“
- "What is your husband's name?“ - she hesitates, finally answers:
- "I believe ... Auguste.“
- "Your husband?“
- "Oh, so!“
- "How old are you?“
- "Fifty-one.“
- "Where do you live?“
- "Oh, you have been to our place“
- "Are you married?“
- "Oh, I am so confused.“
- "Where are you right now?“
- "Here and everywhere, here and now, you must not think badly of me.“
- "Where are you at the moment?“
- "This is where I will live.“
- "Where is your bed?“
- "Where should it be?“
Around midday, Frau Auguste D. ate pork and cauliflower.
- "What are you eating?“
- "Spinach.“ (She was chewing meat.)
- "What are you eating now?“
- "First I eat potatoes and then horseradish.“
- "Write a '5'."
- She writes: "A woman"
- "Write an '8'."
- She writes: "Auguste" (While she is writing she again says, "It's like I have lost myself.")
Alzheimer concluded that she had no sense of time or place. She could barely remember details of her life and frequently gave answers that had nothing to do with the question and were incoherent. Her moods changed rapidly between anxiety, mistrust, withdrawal and 'whininess'. They could not let her wander around the wards because she would accost other patients who would then assault her. It was not the first time that Alzheimer had seen a complete degeneration of the psyche in patients, but previously the patients had been in their seventies. Deter piqued his curiosity because she was much younger. In the weeks following, he continued to question her and record her responses. She frequently responded, "Oh, God!", and, "I seem to have lost myself". She seemed to be consciously aware of her helplessness. Alzheimer called it the "Disease of Forgetfulness".
CUE THE TEARS ...
Thursday, July 14, 2011
25 Word Flash Non-Fiction: Midnight Adventure
Middle of the night. Shit! shit! shit! What is the matter? How did they get in, pointing at a pair of shoes in the corner.
Wednesday, July 13, 2011
What Goes On In There?
I feel that I have a really good understanding of WHAT happens (or doesn't happen) in Gregory's brain that causes his outward appearances of Alzheimer's/Dementia. I have learned a lot by reading and on the Alzheimer's Association website including several on-line workshops provided there. I also have learned a lot from our neurologist and from a close family friend whose husband was diagnosed with ALZ about ten years earlier than Gregory.
What I have no grasp on is HOW at times the behaviors, actions, communications manifest themselves. I have put together the following way of describing it to those who ask.
"At times I have absolutely no framework what-so-ever on which to hang an understanding of what took place during an interaction between Gregory and myself. Therefore I have no way of figuring out how to react or reply. This causes my confusion to compound his confusion and at times causes my response to be less than graciously caring. The caring is always there, but sometimes it is not as gracious as I would like it to be."
Putting my feelings into words helps me better deal with the reality of any particular situation/or interaction and helps improve the response to any particular situation/interaction. Sometimes blinking and shaking my head in amazement helps me get through one of those types of interactions.
Monday, July 11, 2011
Ounce of Prevention
In our condo, we now have Alert 1's medical security system. You've heard the "I've fallen and can't get up!" commercial? Well I decided that for less than a dollar a day it was worth the piece of mind to know that I could get help quickly if I was in trouble.
Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.
Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.
So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.
The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.
I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.
I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"
Did I say I? Well with Gregory's Alzheimer's I realized that I could not depend on him in an emergency. If I need help, unless I am really far gone, I could probably be able to crawl to the station in the bedroom, TV room, or kitchen and push the button for help. If I can not tell the responder what the problem is they will automatically send an ambulance and paramedic.
Then they will notify several people on our emergency list to inform them of what is going on. Our friends can not get to the condo quickly enough to help but they can get here to help Gregory until I return or until other arrangements are made.
So today the system had a test. A fierce storm ripped through Chicago, including Evanston, and over 600,00 people were without power for most of the day. The power went out at 8:00 am, we left the condo at about 10:00 am and by 1:00 pm we received a call first from Jan, and next from Roger, the two first responders on our emergency list.
The Alert 1 unit has a battery back up for short power outages but our outage had spent the battery and the Alert 1 people got a "bad battery" message. They tried calling us but not only were we away from the condo, when the power is out our telephone system doesn't work. So Alert 1 followed through and called the first responders to check up on us.
I called the company back and let them know we were OK. I also added my cell phone number to their information bank with the explanation that our land line does not work when the power is out. While the exercise seemed full of "Strum and Dram" it was good to know that the system worked well.
I called Jan and Roger back and said, "We have not fallen and if we had, we were able to get up!"
Saturday, July 9, 2011
Purpose
An interesting observation: When Gregory has a purpose behind what he wants to say, the words just don't come. Sometimes he is able to work out the details of his idea and other times able to hint or dance around the idea. On the other hand, when he just says what he wants to say, without any purpose, the words come easily.
He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.
Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.
Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.
On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.
Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y E S!
I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.
He talks to the cat with no problem. Often he talks to me with no problem: "Do you want music with dinner?" No problem. ""Time for lunch." "I would like a frozen yogurt from Red Mango downstairs." "Bedtime already?" Spontaneous ... no advanced purpose ... no problem.
Formulating a thought ... problem! Yesterday we were on Navy Pier, in the beer garden, enjoying live music. Earlier, when we were having coffee and sharing a cookie, he was trying to tell me about something, some building on the Pier. He couldn't get any further so we let it drop.
Usually I sit and attend quietly with eye contact for as long as he needs while he works out his thoughts. This time he announced, "Oh I can't get there. We'll have to ask Roger." This didn't make much sense either at the time but I let it drop.
On our way to the Beer Garden, he even looked at a map of the Pier but to no avail. While in the Garden he was back on the topic of the "building on Navy Pier." I guessed a little: "Michael's Museum?" No. "The Ball Room?" No. "The Winter Garden?" No. Etc.
Finally he said, "You know ... the garden." "Winter Garden?" I repeated. No. "At our condo?" No. "The Shakespeare Garden at Northwestern?" Y E S!
I was then able to put the pieces together. There is a Shakespeare Theater on Navy Pier. We have been to a few shows and they are always great. He was thinking that he would like to see one this summer. Apparently Roger had mentioned that he saw the review of the current Shakespeare play in the newspaper. Puzzle solved ... this time.
Tuesday, July 5, 2011
Gifts
Comments on: ""Accept the Gift" by Jane Hirshfield
In the poem, she discusses dealing with receiving a Bull "from the gods" as a gift. What do you do with it? How do you behave? Although the Bull is frightening, you will come to love it and to understand it as you nurture and take care of it. And when the time comes, you will be able to give it back to the gods freely.
While the subject may give you thought, the message is simple: accept it, take care of it, give it back when asked.
Housden comments: " ... life is a series of present moments rather than a linear progression from past to future, that our one true life can only really take place here where we are, and now .... Each moment comes bearing a gift - or is it a curse? - from the gods .... Someone somewhere will always be the recipient of it."
It can be dangerous and frightening or loving and comforting. The later is easy to accept. The former arrives when something storms into your life and your "comfortable, protecting circle is suddenly broken."
Hirshfield suggests in her poem that it be accepted as a gift, not a curse, even though it may be a sudden illness or loss, a crisis, a storm or any kind. It is a gift because it is the moment you are in and the only one you have.
Obviously grief, illness, loss will be heavy and will bring sadness and tears. But in the long term how you welcome it will influence how you come out the other side. Housden says, "Anything that surges out of the unconscious will always be bigger than the ego's drive to shape experience the way it wants to see it." The price of the gift is loss of control and surrender. What you can hold on to, however, is how you deal with it.
Acceptance of the moment as a gift is in essence a reminder that "everything in this world is only on loan to us." This awareness helps us to live each moment as well as we can, not miss it. Even though the moment can be taken away from us, "the essence of it can never be taken away from us, the love that has burst open our heart and ushered in a deeper, more vital way of living will always continue."
An additional awareness is that everyone, most likely invisibly to us, is involved in and dealing with their own moments.
Monday, July 4, 2011
Happy Birthday
Happy Birthday Gregory! He loves fireworks and his chocolate cake. When asked he will tell you he is 25 years old. Really 63 this year. I love my little boy.
Love
Comments on: "Gate C22" by Ellen Bass
"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.
"...often deep, always poignant, frequently woven with threads of grief and loss as well as starlight. And always, always, so achingly human, which is why love is her subject over and again."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 33. 2007.
Sunday, July 3, 2011
Overheard
Michael, on seeing a license plate that said REPEET: "Peet and Repeet were sitting on a fence, Peet fell off. Who was left?"
Gregory: "I don't know him."
Michael: Quiet
Gregory: "I don't know him."
Michael: Quiet
Change
Comments on "Sonnets to Orpheus, Part Two, XII" by Rainer Maria Rilke.
"Change happens in every moment. Not just the events of our lives, but the cells in our bodies, our memories, even our sense of who we are, all shift in a moment, often imperceptibly. We, on the other hand, tend to nurture a fixed idea of who we are and where we are going. We harbor notions of what is good for us and what is not, and try to organize and strategize accordingly. Yet life does what it does with scant concern for our preferences, so the poet is urging us to look beyond the parade of circumstances and events to the fundamental fact of change itself. In wanting the change, we are aligning ourselves with truth, with what is already happening anyway. We flow, rather than self-consciously make our own way. And in that flow sense of who we are and where we are going becomes more malleable and fluid, more responsive to conditions around us instead of bound by fixed beliefs and agendas. In the flow of change, self-forgetting happens, and a deeper remembrance can emerge, the remembrance of being always and ever joined to a greater life - not as another idea or elegant concept, but as a lived experience in the moment."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 21. 2007.
"Change happens in every moment. Not just the events of our lives, but the cells in our bodies, our memories, even our sense of who we are, all shift in a moment, often imperceptibly. We, on the other hand, tend to nurture a fixed idea of who we are and where we are going. We harbor notions of what is good for us and what is not, and try to organize and strategize accordingly. Yet life does what it does with scant concern for our preferences, so the poet is urging us to look beyond the parade of circumstances and events to the fundamental fact of change itself. In wanting the change, we are aligning ourselves with truth, with what is already happening anyway. We flow, rather than self-consciously make our own way. And in that flow sense of who we are and where we are going becomes more malleable and fluid, more responsive to conditions around us instead of bound by fixed beliefs and agendas. In the flow of change, self-forgetting happens, and a deeper remembrance can emerge, the remembrance of being always and ever joined to a greater life - not as another idea or elegant concept, but as a lived experience in the moment."
Ten Poems to Change Your Life Again and Again by Roger Housden. P 21. 2007.
Saturday, July 2, 2011
Poetry
In the next few posts, I will be quoting from and/or discussing a few of the ten poems in Roger Housden's Ten Poems to Change Your Life Again and Again 2007.
I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.
Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.
As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.
As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)
In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.
I have found great delight as well as comfort in poetry as a way of understanding and dealing with my emotional and intellectual reactions to the daily interactions with Gregory's diagnosis of Alzheimer's Disease.
Very often, when I sit down to write about them, my words express themselves poetically. I read somewhere, wish I could acknowledge where, that poetry is as close to truth as one can get. The poet works painstakingly hard to select just the correct words and just the correct number of words to paint, yes paint, a picture of what he wants to express.
As a writer, I too lovingly struggle with this. If you have been following this blog and my writer's blog, you have seem some of my poetry and you might have found also some of my 6, 10, or 25 word stories. Telling a story in so few words, while called "Hint Fiction," is so close to writing poetry.
As a writer, I have become so obviously aware that other writers have written words in ways with which I could do no better. So I find that "quotations" from others are important to me. I mark them with a Post-it while reading then process them in writing (with citations.)
In the next few posts, it looks like I am combining all of this: quotations about poetry from others. Let me know what you think.
Joy
As paraphrased from The Daily Word, Saturday, July 02, 2011.
JOY
I celebrate life with joy and gratitude.
Regardless of my circumstances at the moment, on this blessed summer day, I look for evidence of goodness and take it in with all my senses. I hear the joyful sounds of life--music playing, children laughing, and neighbors chatting outside their homes.
I savor the fragrance from a nearby rose garden or the aroma of dinner cooking on an outdoor grill. The taste of a refreshing glass of iced tea or an ice cream treat brings a smile to my lips. I revel in the warm summer sun or the coolness of an air-conditioned room. Each sensory experience reminds me of the joy of being alive, as joy shines in me and in the world.
I savor the fragrance from a nearby rose garden or the aroma of dinner cooking on an outdoor grill. The taste of a refreshing glass of iced tea or an ice cream treat brings a smile to my lips. I revel in the warm summer sun or the coolness of an air-conditioned room. Each sensory experience reminds me of the joy of being alive, as joy shines in me and in the world.
Wednesday, June 29, 2011
Setting Expectations
I am part of an online Alzheimer's Support Group called "Circle of Care" which is sponsored by the Novartis Drug Company. This is a chain of conversation which I recently had with Deborah, one of the facilitators.
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
INTRODUCTION: Hundreds of years ago, the medicine we have today would have seemed like magic. Today we know that medicine is all about science and each medicine works in very specific ways. How we learn about the ways a medicine might work is varied though – some of us gather information online, some from our MDs and some from friends and family – or maybe a mix of it all. In this discussion, we want you to think back to when your loved one first started their current medication for Alzheimer’s disease or dementia and tell us a bit about your expectations of the medication at that time.
MY REPLY: Right from the beginning the doctors said that Aricept and Namenda would only slow down the disease NOT cure it. We were surprised when Gregory began first Aricept his functioning improved greatly. If he had been functioning at 60%, he shot back up to 80%. Doctors and we were pleased. Then within a few months the functioning was on a downward roller coaster ride so we began Namenda. The same amazing improvement happened and the decline has been very slow since. We still do not expect things to ever be normal again but I do believe the medications have helped. Just recently Aricept has been approved at a little over double the dose and we have begun taking them. Here's hoping for improvement ... certainly NOT cure. P.S. I have always said, "If it would just stop here." But it doesn't. Does it?
DEBORAH'S COMMENTS: But, hope is always there....Michael, before you talked to your doc, did you have expectations of what the Aricept would do? If so, where did the expectations come from? I'm trying to understand how we build our mental map of what we can expect from these medications --where we gather our info to make the mental map. What do you think?
MY REPLY: I have always believed that the "patient" (or caregiver in this case) has at least as much responsibility for understanding the illness, the medications, the precautions, the prognosis, etc ... as does the doctor. Both must be part of the team that makes the best possible decisions and makes the best possible use of the information available. So many people will reply, "I just do what the doctor told me." I say, "Question and understand. Challenge if necessary. Do not accept blindly." I have also heard, "It is just too confusing so I didn't bother." I say, "Bother! If you don't understand ask again. A good doctor will take the time to help you understand and/or send you in the direction of getting the extra help to understand that you need. Have someone help you understand. Don't just settle."
What I knew about Alzheimer's Drugs came from discussions with our doctors and study online. From the beginning, I knew that Aricept and Namenda would not CURE or REVERSE the dementia. I knew that it would help to slow it down so the quality of life would last for a little longer. I also knew that everyone reacts differently within the general pattern of things. Therefore, I was not so surprised when the medications gave Gregory a jump start of renewed "availability."
And I agree, Deborah, it doesn't stop but the hope is always there. Even if it is the hope to get through one day, one success, one failure at a time. Hope to be strong, supportive, able for your loved one. And storng, supportive, and able for yourself.
Tuesday, June 21, 2011
A Day in the Life of a Caregiveer
This morning Gregory told me that he had some blood today while he was getting dressed.
I asked, "Where?"
He replied, "On the bathroom counter."
Not erring on the side of too much information, lets just say I figured out what he needed, took care of it, and got a good laugh out of it as well.
I asked, "Where?"
He replied, "On the bathroom counter."
Not erring on the side of too much information, lets just say I figured out what he needed, took care of it, and got a good laugh out of it as well.
Monday, June 20, 2011
Skip a Beat
Gregory and I were sitting out on the balcony after lunch. It was quiet and peaceful. Just below is the roof top garden and terrace. Flowers, trees, bushes, grass, and lawn furniture. No one was using the garden or terrace just then and it was pleasant to consider it our own.
I comment, "I am glad that there isn't an outdoor pool down there with people screaming and splashing about right under our window."
"Yes," Gregory replies, "And Chuck and John's."
Naturally, the conversation confuses me. So I ask for clarification, "Chuck and John don't have a pool?"
"I know, but I miss visiting with them."
I just sat there bewildered for a moment. I am beginning to think "Foolish Me," I should have just smiled and nodded.
Gregory asks, "Are you OK?"
"Yes, it is just that you need to skip a beat before you go on to the next subject. It confuses me."
I comment, "I am glad that there isn't an outdoor pool down there with people screaming and splashing about right under our window."
"Yes," Gregory replies, "And Chuck and John's."
Naturally, the conversation confuses me. So I ask for clarification, "Chuck and John don't have a pool?"
"I know, but I miss visiting with them."
I just sat there bewildered for a moment. I am beginning to think "Foolish Me," I should have just smiled and nodded.
Gregory asks, "Are you OK?"
"Yes, it is just that you need to skip a beat before you go on to the next subject. It confuses me."
Euphemistic But True
euphemism |ˈyoōfəˌmizəm|nouna mild or indirect word or expression substituted for one considered to be too harsh or blunt when referring to something unpleasant or embarrassing.
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?"
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"
• • •
Was talking on the telephone with Jr today and he asked how Gregory was doing. I couldn't talk because G was within hearing range. So I just answered, "Right."
Jr continued "feeling out" how G was doing and wondered, "When Gregory seems to be having a period of difficulties, do they get better or stay at the low point?"
My reply was, "Right."
I was thinking to myself that in the "ebb and flow" of Gregory's cognitive abilities (thank God - if there is one - his physical abilities have not suffered) it is usually "ebb."
Jr then commented that last time he visited, he noticed that, "Gregory wasn't as available as the visit before."
I said, "Right."
Well, without much actual discussion, MJr and I had a nice conversation and two points came out of it for me.
First, while euphemistic, "Not being as available" is a nice way of saying that Gregory's cognitive abilities continue to decline. He still has the cognitive abilities, he just cannot make them available when he need to use them.
Second, I wish that my conversations with Gregory could be as informative as the one I just had with Jr. I am thinking, "Right?"
Saturday, June 18, 2011
Balance
I cannot get the balance
For this round
Of when to think for him
Or when to let him think
His own thoughts.
For this round
Of when to think for him
Or when to let him think
His own thoughts.
Wednesday, June 15, 2011
Existence
Yesterday Gregory and I ran an errand at the hardware store. He was at my side as we went from department to department and as the various store personnel helped us fine what we needed. Then we headed for the checkout.
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Sometime between the heading and the checking out, Gregory disappeared. I realized it when I had my paid goods in hand and was ready to head for the car. No Gregory. I wasn't really worried and what good would worrying do anyway?
I looked outside to see if he had decided to wait by the car. No Gregory. I went back into the store and one of the clerks (who knows us) pointed towards the back of the store and said, "He went that way."
I walked half way back, called out, and from around the corner came Gregory. "Where were you? I asked.
"Looking for you," he replied.
I took him in hand (literally) and firmly but lovingly (and probably with a little relief, a little fear for the future, and a little anger) told him that he needs to stay with me. "In the few minutes it took for me to pay the cashier, you disappeared! That is wandering. That scares me. That can't happen. If need be I'll just have to keep you in sight at all times like a mother hen does with her chicks."
"I am sorry. I try my best."
"I know, but it is like when I have to deal with the 800 operator at the phone company and they apologize for making you wait and for messing up your bill and for not being able to do anything about it ... apologizing doesn't help!!!"
I became quiet on our way back to the car and stayed quiet once in. Gregory was quiet as well. I knew he felt bad but I just had to take a moment or two to regroup.
Finally I said to him something that surprised me when it came out of my mouth, "You know when things like that happen, I PRETEND I DON"T EXIST." Then I added, "I love you. I know you try. We'll be OK."
Managing our Finances
When asked for a survey,
I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.
- What was it that happened that made you realize you needed to take over your loved one’s finances?
- What did you expect it would entail? What does it really entail?
- If you have been doing this for awhile now, what do you wish you knew then that you have learned now?
I have found that over time I take on more and more of the responsibilities that I used to share with or which used to be done alone by my partner. This "taking over" has become a natural progression of being able to continue dealing with the twists and turns of Alzheimer's. My gradual "taking over" helps both of us feel less frustrated. One does what one has to do. Complaining and fretting doesn't help what is.
I am fortunate in having a well founded, over 35 year committed relationship with Gregory so we are "used to each other," and have build a high level of trust in our love for each other. He continues to be aware of what he is NOT able to do and looks to me for support, which I am able to give gracefully (most of the time.) I read on a web site that Circle of Care recently reviewed that if I am not able to be gracefully caring all of the time ... there is no question that at least I do care all of the time. He has been able to give up his grand piano, driving, cooking, and more with little or no fuss and I have been able to compensate. His quality of life and sense of self continues to be strong. From what I hear, this might be a miracle.
Running our daily financial affairs is no big deal. What was a big deal, especially for a same sex couple without the benefit of being legally married, was: 1) getting our trust in order, 2) getting our power of attorney for property and health care taken care of, 3) arranging for Gregory to receive Social Security Disability and Medicare at 55 when he was diagnosed with Early Onset Alzheimer's. It will become even more difficult when or if he needs to go on Medicaid. We had a wonderful elder care lawyer to help, the State of Illinois Department on Aging (it seems that most states have something like this,) and gratefully I am intelligent enough to figure our what we needed to do.
What do I wish I knew then that I know now? YOU CAN DO IT! The fear and depression can slow you down but YOU CAN DO IT! And there are people and organizations out there for the express purpose of helping you. Don't feel overwhelmed even though it is overwhelming. Take one bite of that elephant at a time, chew, digest and before you know it that elephant will have turned into dinner. YOU CAN DO IT!
Tuesday, June 14, 2011
To Every Thing There Is a Season
I have found that with Alzheimer's Disease, to every thing there is NO season. We all have our routines. Most of us circle around our routines with tiny changes here and there. For example, as the seasons change, our routines change. We take longer walks, we dress differently for Summer than we do for Spring. The days are longer, the nights shorter, we sleep differently. We eat differently.
My latest awareness with Gregory and the progress of his dementia is that the seasons will change anyway but he is not be able to change with them. This Spring into Summer he has not been able to gauge what to wear, how to dress based on the temperature outside. The temperature means nothing, the weather forecast means nothing.
Jeans vs shorts, long sleeve vs short sleeve, heavy jacket vs light jacket ... mean nothing. When I suggest he wear an undershirt under his over shirt, the words do not translate. If I try to explain it only complicates things. If I get up and show him, it confuses.
Here I am again at a point where I find myself saying to myself, "I don't know how to do this." The tears are back, the sadness is back, the heaviness is back. I don't know how to do this. There is no answer. I don't know how to do this.
Yesterday, while at a meeting at the museum, I called to see how he was doing. I guess he got through breakfast alright but he answered, "I am not doing well." He sounded like something was terribly wrong. He sounded ill. He sounded distraught. He finally was able to explain (remember language doesn't work too well anymore) that he just didn't know what to put on so he could go out for a walk. I tried to suggest but it only confused. Finally I said, "Honey just put on anything, go outside, and see how it feels."
"I'll figure it out," was his reply. All I could do was tell him I love him, go back to my meeting, and hope for the best.
Just now as I am writing this, he brightly showed up and wished me, "Happy Birthday!"
"Why do you think today is someone's birthday?" I gently asked.
"Did I mess up again?" he wasn't able to explain.
"What made you think today was a birthday?"
After a thoughtful pause, "Oh, I can't go through all of that."
Turns out he thought it was his birthday (which is 7/4 and today is 6/14) but I am not sure what prompted that.
I think I'll go take a shower and cry.
The lyrics are taken almost verbatim from the Book of Ecclesiastes, as found in the King James Version of the Bible, (Ecclesiastes 3:1) though the sequence of the words was rearranged for the song. Ecclesiastes is traditionally ascribed to King Solomon.
With Alzheimers's ... there is only time ... |
Tuesday, May 31, 2011
Care Partners
This article was taken from "Perspectives"
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: lsnyder@ucsd.edu
Creating Caring Partnerships
We frequently hear and read about Alzheimer’s “caregivers.” This word implies that others give care to the person with Alzheimer’s who receives it. In fact, many people with Alzheimer’s or a related dementia are quite capable of being caring to those who are trying to care for them. More recently, the term “care partners” has received some attention as a more descriptive term for the relationships that can occur in the early-stages of a dementia.
We asked people living with Alzheimer’s or a related disorder: What are the qualities of a good care partner?
Their following answers apply to all in- volved in the care partner experience whether you are the person with early- stage dementia or a loved one:
“Don’t gang up on or crowd a care part- ner. It can be overwhelming if too many people are trying to help at once with too many different ideas.”
“The ability to listen and not be talking all of the time is important in a respectful care partnership.”
“A happy person – someone who smiles and tells an occasional joke.”
“It’s good to have things that you enjoy doing together – shared interests and ac- tivities make a more positive care partner- ship.”
The ability to have open communication and say things that are important to you without the other person getting all worked up.”
“Compassion is an essential ingredient in a care partnership – trying to understand what the other person may be going through. Alzheimer’s can be hard not just on me but on those around me.”
“Don’t always do things for the other per- son; partner with the other person so you accomplish things together. My wife and I do the bills together now and although she does the cooking, I try to do the dishes.”
“Put on your ‘listening’ ears – it’s not enough to just hear someone. You have to pay attention and listen to their message without a lot of other distractions.”
“Adjust your expectations of each other. Sometimes my wife wants me to try to do something that I just don’t think I can do anymore. And sometimes I ask more of her and expect her to do too much or am not sensitive to everything she already does for me.”
“Try to reduce each other’s stress level. Sometimes small acts of love or kindness go a long way.”
“Look out for each other’s health. I need help with my medications because I forget what I have to take, but my husband needs to exercise so I make sure we walk every day.”
“Good care partners know when to step in and when to back away. Everyone needs a little space and some peace and quiet.”
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