Ten Requests from the Person with Alzheimer's
by Twice Blessed, a Caregiver
[I don't agree with all of these; for instance, I don't know that AD patients always have hope (perhaps the hope is in the caregiver) or that they miss the way things used to be. Generally, they don't remember (perhaps for a fleeting second), but these are good guidelines from a caregiver who participates in the Alzheimer's on-line community. She posts this above her husband's bed. I'm not sure I would ...EAH]
Ten Requests from the Person with Alzheimer's
1. Be patient with me-- Remember I am the helpless victim of an organic brain disease which is out of my control.
2. Talk to me-- Even though I cannot always answer you, I can hear your voice, and sometimes I can comprehend your words.
3. Be kind to me-- for each day of my life is a long and desperate struggle. Your kindness may be the most special and important part of my day.
4. Consider my feelings-- for they are still very much alive within me.
5. Treat me with human dignity and respect--as I would have gladly treated you if you had been the victim lying in this bed.
6. Remember my past--for I was once a healthy vibrant person full of life, love, and laughter, with abilities and intelligence.
7. Remember my present-- I am a fearful person, a loving husband, father, grandfather, uncle, or dear friend who misses my family and home as I knew it very much.
8. Remember my future-- Though it may be bleak to you, I am always filled with hope of the tomorrow.
9. Pray for me--for I am a person who lingers in the mist, that drifts between time and eternity. Your presence may do more for me than any other outreach or compassion you could extend to me.
10. Love me-- and the gift of love you give will be a blessing which will fill both our lives with light forever.
from Twice Blessed's website
Saturday, March 31, 2007
Friday, March 30, 2007
Bringing Him Home
March 30, 2007
Thurs.
5 am
It has been seven months since Abe entered the ALF and though he has adjusted well to his new surroundings, I am yet to get used to his absence in our home. This past week - perhaps this was the first time it sunk in - I finally acknowledged that he lived somewhere else and he would never be in our house again. I kept walking up and down the stairs, going in and out of the rooms repeating: He’ll never be in this house again.
Since last August when he went into the facility, I have been wanting to bring him home, all the while knowing this was physically and emotionally impossible. Or thinking it was. I had gone out to eat and to a poetry reading with a friend the night before, the first time in I don't know how long and, all of a sudden it kicked in: Abe really lived some place else; even though he is alive, he lives some place else.
The next morning I called the ALF and let the caregiver know that I would be there early and could she have him ready to go out. It was 9 am, he hadn’t wanted breakfast and was still in bed. I spoke to him and he got right up. When I arrived he was sitting on our love seat smiling. I said, “Come on, it’s a beautiful day. Let’s go for a ride.” He was delighted. I brought him home.
We drove the scenic back roads so he could see the cherry blossoms, and on the way we stopped to pick up bagels and cream cheese sandwiches for brunch. He went into the deli with me, sat while I waited in line, and enjoyed the comings and goings of the customers. When we pulled up to the house, he recognized it, I think, unbuckled his seat belt and came inside with me. I took him up the elevator which he found comfortable but did not recognize. (Maybe he was in a fog even then, four years ago, when we were having it built). And we sat down at the table to eat our sandwiches.
Afterwards he sat in his recliner and noticed the gas fireplace that I had had installed since he left. I turned on the switch and he watched the flames. I put on Mozart, curled up on the couch, and watched him watch the flames. I felt as if a world I had known for centuries had returned to our living room and all of a sudden, after all these long months, the house - with him in it - made sense again.
Finally the bathroom called and afterwards we went outside for a walk, about half a block, and he was tired. And I was tired watching him be tired and I took him home, collected our things, watched him not say goodbye to the dog and got us in the car. When we arrived back at the ALF, he smiled at the people who greeted him. He wanted to sit down. I watched him sit down. Sat next to him for awhile, then kissed him goodbye and went home.
Thurs.
5 am
It has been seven months since Abe entered the ALF and though he has adjusted well to his new surroundings, I am yet to get used to his absence in our home. This past week - perhaps this was the first time it sunk in - I finally acknowledged that he lived somewhere else and he would never be in our house again. I kept walking up and down the stairs, going in and out of the rooms repeating: He’ll never be in this house again.
Since last August when he went into the facility, I have been wanting to bring him home, all the while knowing this was physically and emotionally impossible. Or thinking it was. I had gone out to eat and to a poetry reading with a friend the night before, the first time in I don't know how long and, all of a sudden it kicked in: Abe really lived some place else; even though he is alive, he lives some place else.
The next morning I called the ALF and let the caregiver know that I would be there early and could she have him ready to go out. It was 9 am, he hadn’t wanted breakfast and was still in bed. I spoke to him and he got right up. When I arrived he was sitting on our love seat smiling. I said, “Come on, it’s a beautiful day. Let’s go for a ride.” He was delighted. I brought him home.
We drove the scenic back roads so he could see the cherry blossoms, and on the way we stopped to pick up bagels and cream cheese sandwiches for brunch. He went into the deli with me, sat while I waited in line, and enjoyed the comings and goings of the customers. When we pulled up to the house, he recognized it, I think, unbuckled his seat belt and came inside with me. I took him up the elevator which he found comfortable but did not recognize. (Maybe he was in a fog even then, four years ago, when we were having it built). And we sat down at the table to eat our sandwiches.
Afterwards he sat in his recliner and noticed the gas fireplace that I had had installed since he left. I turned on the switch and he watched the flames. I put on Mozart, curled up on the couch, and watched him watch the flames. I felt as if a world I had known for centuries had returned to our living room and all of a sudden, after all these long months, the house - with him in it - made sense again.
Finally the bathroom called and afterwards we went outside for a walk, about half a block, and he was tired. And I was tired watching him be tired and I took him home, collected our things, watched him not say goodbye to the dog and got us in the car. When we arrived back at the ALF, he smiled at the people who greeted him. He wanted to sit down. I watched him sit down. Sat next to him for awhile, then kissed him goodbye and went home.
Monday, March 19, 2007
Primo Levi
I'm still reading Primo Levi. This time The Drowned and the Saved. I realize that comparing illness to the concentration experience is invalid, perhaps even unjust; but Concentration Camp literature is helping me conceptualize Alzheimer's more than anything I've read on Alzheimer's. For instance, "... our ability to decide had been amputated. Therefore we are not responsible and cannot be punished." (p.29)
I think of how often Alzheimer patients are punished for "bad behavior," eg. I don't want to take a shower. Leave me alone, and given drugs to modify that behavior so personnel can get their work done. On the one hand, understandable; on the other, a ratio of 1 care worker to fifteen patients is untenable.
One day Abe raised his cane at a resident who was bothering him and right away the head nurse wanted to put him on drugs. "Except for Abe, they're almost all on depacote," another nurse said. I spoke to the doctor and a resident's daughter and that's not at all true. Meanwhile, the cane raising hasn't happened again and he didn't have to go on drugs. Plus, that person has let him alone.
Levi is hopeful, as well as helpful to me:
Why does one write?
Because one feels the drive and the need to do so.
To entertain oneself and others.
To teach something to someone.
To improve the world.
To make one's ideas known.
To free oneself from anguish.
To become famous.
To become rich.
Out of habit.
-Primo Levi
from his essay Other People's Trades
Lines 1 and 6 apply to me more than the others...
I think of how often Alzheimer patients are punished for "bad behavior," eg. I don't want to take a shower. Leave me alone, and given drugs to modify that behavior so personnel can get their work done. On the one hand, understandable; on the other, a ratio of 1 care worker to fifteen patients is untenable.
One day Abe raised his cane at a resident who was bothering him and right away the head nurse wanted to put him on drugs. "Except for Abe, they're almost all on depacote," another nurse said. I spoke to the doctor and a resident's daughter and that's not at all true. Meanwhile, the cane raising hasn't happened again and he didn't have to go on drugs. Plus, that person has let him alone.
Levi is hopeful, as well as helpful to me:
Why does one write?
Because one feels the drive and the need to do so.
To entertain oneself and others.
To teach something to someone.
To improve the world.
To make one's ideas known.
To free oneself from anguish.
To become famous.
To become rich.
Out of habit.
-Primo Levi
from his essay Other People's Trades
Lines 1 and 6 apply to me more than the others...
New York Son's Here!
My New York's son here. He's grateful for Seattle and la la land, as he calls it, and is great at hanging out. It's quite wonderful to like your kids. We talk non-stop from the time he's off the plane till he goes back. He'll be here 7 days!! but is here for a conference so has to work too. He's already done his Nordstrom's shopping - so that's over - and gone food shopping -- lots of chips and dips and expensive wine.
When I told Abe New York son was coming and he'll have a new visitor today, Abe said: And an important one at that. What a blessing that he still feels the connection.
When I told Abe New York son was coming and he'll have a new visitor today, Abe said: And an important one at that. What a blessing that he still feels the connection.
Friday, March 16, 2007
Reading Update
January
Haim Gouri's Words in My Lovesick Blood
Interpretation of Murder, Jed Rubenfeld - funny spoof on psychoanalysis
The House on Mango Street, Sandra Cisneros - coming of age
On Writing: A Memoir of the Craft, Stephen King - super macho but good
Along the Bloodline, Adelle Foley - haikus
Last Wife: Poems, Claudia Emerson - narrative
Bodies and Souls: The Tragic Plight of Three Jewish Women Forced into Prostitution in the Americas, Isabel Vincent - well-written history by a Canadian reporter.
The Book of Blessings: New Jewish Prayers for Daily Life, The Sabbath and the New Moon, Marcia Falk - she turns some of her poems and those of Yiddish women writers into prayers. Helpful to me as I continue managing Abe's care.
February - lots of poems, plus work by Rabbi Naomi Levy regarding Abe's care. She'll be at Beth Shalom last weekend in April but I'll be in NY at the Pen America conference
American Imago: Psychoanalysis and the human Sciences
Freud's Requiem: Mourning, Memory, and the Invisible History of a Summer's Walk, Matthew von Unwerth - Freud takes a walk in the country with Rainer Maria Rilke, and Lou Andreas-Salomé - stunning
March
Survival in Aushwitz, Primo Levi - A powerful life force. Even helps me understand Alzheimer's better.
Collected Poems, Primo Levi
Haim Gouri's Words in My Lovesick Blood
Interpretation of Murder, Jed Rubenfeld - funny spoof on psychoanalysis
The House on Mango Street, Sandra Cisneros - coming of age
On Writing: A Memoir of the Craft, Stephen King - super macho but good
Along the Bloodline, Adelle Foley - haikus
Last Wife: Poems, Claudia Emerson - narrative
Bodies and Souls: The Tragic Plight of Three Jewish Women Forced into Prostitution in the Americas, Isabel Vincent - well-written history by a Canadian reporter.
The Book of Blessings: New Jewish Prayers for Daily Life, The Sabbath and the New Moon, Marcia Falk - she turns some of her poems and those of Yiddish women writers into prayers. Helpful to me as I continue managing Abe's care.
February - lots of poems, plus work by Rabbi Naomi Levy regarding Abe's care. She'll be at Beth Shalom last weekend in April but I'll be in NY at the Pen America conference
American Imago: Psychoanalysis and the human Sciences
Freud's Requiem: Mourning, Memory, and the Invisible History of a Summer's Walk, Matthew von Unwerth - Freud takes a walk in the country with Rainer Maria Rilke, and Lou Andreas-Salomé - stunning
March
Survival in Aushwitz, Primo Levi - A powerful life force. Even helps me understand Alzheimer's better.
Collected Poems, Primo Levi
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