Earlier today at Lieberman, Barbara died. I do not remember what she looked like but I did notice her empty place at the table just behind Gregory's. She had stopped eating some three days earlier.
And I heard that Marie was probably on her way out as well. I do remember what she looked like. She sat at the other end of Gregory's table, or better said, was brought into the dining room and placed at the end of the table.
In stark contrast to the other active, somewhat responsive people at the table (Greg, Betty, Julie, and Fred,) she spent her time in the dining room asleep, waiting to be fed, crumpled into a fetal position in her tipped back wheel chair/bed. At times she would be staring off into the distance but never responded to a "Hello" or "How are you today?" Her world was mostly limited and internal.
On earlier days, I remember looking at her and even in her disheveled condition; imagining the loving, sophisticated woman she used to be. But no more.
After kissing Gregory goodnight and on my way towards the elevator, a nurse was headed to Marie's room where family had been sitting with her all day. I asked the other nurse who was just outside the room how Marie was doing and she told me that Marie had just passed.
No matter how "far gone" some of these residents may be, or how angry and non-communicative, I cannot walk by a fellow human being in the hall and not smile real big and nod my head or say, "Hello." In turn, over time, some of the residents regularly now smile at me and say hello.
When in the dining room and someone needs help, if I know how to help without getting in the way and for example only if I know what to do, like getting thickened juice for someone who needs it to be thickened so they will not choke when drinking, I have to help. When Freddy is upset and cursing, I hold his hand and he holds my hand back and settles down.
My love for Gregory continues to grow, my expectations for him now are in the present moment and mostly in line with his abilities and not my hopes and fears for the future, and my love of fellow humanity continues to be tested and stretched. There is such great love and beauty to be experienced at Lieberman.
I grief and am also grateful for Barbara's and Marie's deaths.
Showing posts with label Help. Show all posts
Showing posts with label Help. Show all posts
Sunday, March 2, 2014
Wednesday, December 11, 2013
Helpless Helping
I must supervise you every time you go to the bathroom. I always tell you to use the bathroom before we go out and I suggest you use it after an hour or two has gone by at home. I visually make sure that you pull down not only your pants but also your underpants. Lately you lower yourself with great uncertainty onto the toilet seat.
I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.
I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper. Telling you to "Flush" doesn't register and confuses the process so I do it for you.
You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."
You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.
You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.
You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.
It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.
When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.
Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.
About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.
We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.
In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."
So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.
I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.
I listen for "plots" or "tinkles." When you seem done, I tell you to sit for a while and sure enough you do more. You don't know when you have more to do so the waiting works. I can't ask, "Did you shit?" "Did you pee only?" to tell me what kind of help to give so I either have you "wipe" anyway or ask you to stand up so I can see what in in the toilet bowl.
I verbally go thought the steps with you of taking toilet paper, wiping, tossing into bowl and repeating until clean. I tell you to use a wet wipe next and sometimes have to help you open the box they are stored in. I flush in-between wipes if you are using a lot of paper. Telling you to "Flush" doesn't register and confuses the process so I do it for you.
You are always amazed and sometimes upset when "something is happening down there" as if moving your bowels or urinating is an amazing, unusual event in your life. I used to say something like "taking a dump is good" but have stopped bothering and just say "It's OK. Good job."
You do not know how to use a kleenex to blow your nose but instead use fingers aiming the blow towards the floor. You did OK once I showed the box of tissue but then you did not know where to throw the used tissue. You did not know how to open the garbage can once I showed it to you.
You do not automatically know how to use the knife and fork any longer, and you use your fingers to eat a lot, which I don't mind at all. But now being able to pick up a piece of food in your fingers and biting off a piece is the next skill you are loosing.
You know you want a glass of water, and sometimes can even identify the glass sitting in front of you, but then you stare at it not knowing the next step.
It's hard enough to get you ready to go outside during the winter but even with help putting on your coat, you get your arms all tangled up in the sleeves, untuck the scarf once I have tucked it, stand at such an angle that I have difficulty zipping the coat closed, take your ear muffs off once I have put them on for you, cannot coordinate your fingers and thumb in the correct orientation, as well as closed position to put on your gloves.
When we arrive at our destination and I am helping you take off your coat I unzip the zipper, I tuck your gloves and earmuffs into the coat pockets, I tell you to take off your coat. This causes you to immediately take the gloves and earmuffs out of your pockets.
Fastening and unfastening your seatbelt in the car takes place correctly about fifty percent of the time. One time you got yourself so wrapped up and knotted up in the straps that I didn't know how to get you out. Finally figured it out but had to put you through some contortions. Often you do not know how to open the car door.
About half the time now when you read you forget to put on your glasses and wonder why the reading isn't working. Another half of the time you put on your glasses and wonder why the room is blurry. Sometimes you do OK with your glasses but I have to monitor when they are dirty and clean them for you.
We watch TV together a lot and that is a nice pass time. At times, your responses to my comments make we wonder if you really understand what you are watching and sometimes the responses make me tip my head and wonder if we are watching the same program.
In our day to day conversation (meaning my talking) I'll point out something through the window of the condo or that we are passing while in the car. I can tell by the focus of your eyes that you are not looking at the same thing I am pointing out. Sometimes I try to directed your gaze and you finally register what I was talking about. Other times it just does't work and the experience has passed. I just say, "Never mind." It sound rude but what can I say. Maybe "Oops we missed it."
So even as I help you, I cannot help you and that makes me sad. And the part that probably makes me the saddest is that we cannot talk about what went wrong or about either of our frustrations. And I am sad that sometimes I do not know how to begin to help or what to do to help. And then there are times I am sad that I am sad and that makes you sad.
I still try to show you, or explain the steps as simply as I can, or demonstrate. I touch, I poke, I push, I suggest physically. Most of the time nothing works. Most of the time I feel so helpless especially as your needs continue to increase and mystify. And most of the time I feel sad.
Tuesday, February 12, 2013
Some Mornings
Some mornings he wakes up and nothing seems to work.
This morning he ran into problems with shaving. Shaver in hand, he called me into the bathroom trying to tell me something, but never was able to get to it. He pointed at the shaver, and then the mirror and said, "There is a little something."
That is as far as we got after his attempting to communicate several times. I waited patiently, guessed at a few things, and finally told him just to shave, which he did.
A little while later he called me again with the "light bulb" having gone on again, he struggled to tell me what he had realized, and failed again ... another dark communication. We have been up for 30 minutes.
He did OK beginning his shower, I was in the bedroom when I heard him shouting "Help! Help!" I came running to find that he was finished showering and had begun to turn the water off but only did so half way and was standing in the cold stream of water still coming out of the shower head.
I turned the water hot again so he could warm up and then we turned it off together. Actually he did so by himself without any help, just my standing there which made it a little more frustrating and confusing.
Next he struggled to put on his sweatshirt, arm through the head hole and out the sleeve. He kept mumbling, "No that's not right" and continued trying to figure out how to put it on. He sat down on the bed for a while seemingly trying to regroup. I held back and he finally did figure out how to put the shirt on.
We have been up for an hour.
While he was reading the newspaper, I set out the cutting board with his bread and honey and announced, "Your bead and honey are ready." He thanked me and came over to begin preparing his first of the morning food. I returned to the bedroom.
Some five or ten minutes later I went out to see how he was doing. He was standing by the toaster, looking back at the cutting board, and back and forth again and again.
He was unable to connect the toast needing to go into the toaster and the button needing to be pressed. We worked through the process together.
When the toaster was finished and his toast popped up, he asked, "Does that turn it off?"
I am grateful that he sought my help, that he was able to begin shaving and then to finish, that he was able to take a dump without my help, that he was able to shower for the most part, that he was finally able to figure out how to get dressed, that he kissed my head as he left the bedroom and said, "I love you," that he was able to read the newspaper, that he was able to eat his toast after putting on the honey, and that he was able to go back to his newspaper.
I am grateful that I was able to keep my patience, not jump in to help too quickly, that I didn't get emotionally involved, that I was able to move from one difficulty to the next without anger, and that he kissed me on the head and said, "I love you."
I am frightened that we are getting closer to my having to more closely supervise his shaving and showering, physically helping him get dressed, and not only making his breakfast but also toasting his first up before breakfast snack because when confused verbal instructions do not work.
We have been up for two hours.
This morning he ran into problems with shaving. Shaver in hand, he called me into the bathroom trying to tell me something, but never was able to get to it. He pointed at the shaver, and then the mirror and said, "There is a little something."
That is as far as we got after his attempting to communicate several times. I waited patiently, guessed at a few things, and finally told him just to shave, which he did.
A little while later he called me again with the "light bulb" having gone on again, he struggled to tell me what he had realized, and failed again ... another dark communication. We have been up for 30 minutes.
He did OK beginning his shower, I was in the bedroom when I heard him shouting "Help! Help!" I came running to find that he was finished showering and had begun to turn the water off but only did so half way and was standing in the cold stream of water still coming out of the shower head.
I turned the water hot again so he could warm up and then we turned it off together. Actually he did so by himself without any help, just my standing there which made it a little more frustrating and confusing.
Next he struggled to put on his sweatshirt, arm through the head hole and out the sleeve. He kept mumbling, "No that's not right" and continued trying to figure out how to put it on. He sat down on the bed for a while seemingly trying to regroup. I held back and he finally did figure out how to put the shirt on.
We have been up for an hour.
While he was reading the newspaper, I set out the cutting board with his bread and honey and announced, "Your bead and honey are ready." He thanked me and came over to begin preparing his first of the morning food. I returned to the bedroom.
Some five or ten minutes later I went out to see how he was doing. He was standing by the toaster, looking back at the cutting board, and back and forth again and again.
He was unable to connect the toast needing to go into the toaster and the button needing to be pressed. We worked through the process together.
When the toaster was finished and his toast popped up, he asked, "Does that turn it off?"
I am grateful that he sought my help, that he was able to begin shaving and then to finish, that he was able to take a dump without my help, that he was able to shower for the most part, that he was finally able to figure out how to get dressed, that he kissed my head as he left the bedroom and said, "I love you," that he was able to read the newspaper, that he was able to eat his toast after putting on the honey, and that he was able to go back to his newspaper.
I am grateful that I was able to keep my patience, not jump in to help too quickly, that I didn't get emotionally involved, that I was able to move from one difficulty to the next without anger, and that he kissed me on the head and said, "I love you."
I am frightened that we are getting closer to my having to more closely supervise his shaving and showering, physically helping him get dressed, and not only making his breakfast but also toasting his first up before breakfast snack because when confused verbal instructions do not work.
We have been up for two hours.
Saturday, January 19, 2013
When is Helping Not Helpful?
I still help too much. It is my nature to help. It is my nature to nurture. When confronted by a situation in which someone needs help, I will walk in and do my best to help. I will be sensitive, respectful, and take context as well as gestural cues to moderate and if necessary remove my helpfulness.
For example, walking down the street, woman in front stumbles and falls, purse empties. I will go into immediate action to make sure she is OK while at the same time making sure the content of her purse do not go too far astray. I will offer my handkerchief if her nose is bleeding or her hand got scrapped.
I will not only give physical comfort but also try to make sure she is not too embarrassed. After all accidents are accidental but we still seem to get embarrassed at our behavior. Sometimes people do not want help in situations like this and one must respect that. So after inquiring, I back off.
If someone looks like they are having a hard time, perhaps while sitting on a park bench, I will inquire about their needing help. Shall I sit with you? Shall I call someone? Can I help you home?
When we lived on Roscoe, Mary lived in one of the apartments. She was in her 80's, indigent, as close to being a homeless person as one can get while still having a home. She lived with her adult daughter who was developmentally disabled and prone to alcoholism and violence.
I would always say hi to Mary, who spent a lot of time sitting on the front stoop. Sometimes we would sit and talk. Once she had just returned from a neighborhood church that had free lunch and bingo on Wednesdays. She had won a flowered cup saucer as a prize and offered it to me. I thanked her but figured she could use it more than I, I now wish I had taken it as a memento, maybe that would have made her feel good.
One day, when I was leaving for work, I spotted Mary sitting on the stairs of the back porch. She looked very pale if not white. I sat down next to her and we were silent together for a while. "Are you OK."
"Yes, just a little tired."
"Are you sure. Can I help you?"
"No. Thanks. I'll be OK after I sit here a while." I left for work.
Mary died later that day. At least I was able to offer some comfort, if not unspoken love.
Even in very difficult situations, I am able to be strong and helpful. Once while living in New York City, my upstairs neighbor fell down the stairs from her second floor landing. She ended up on my landing with her face caught between the open door and the wall. I heard the crash and went running.
When I saw what had happened I called to Robert, my then lover, bring a blanket! I know you are not supposed to move a person but I did after assessing that she would possibly choke on her blood in this upside down, wounded position. I talked calmly all the time, inquiring about her pain, making sure my moving her wasn't complicating something like a broken neck, wrapped her in a blanket and held her in my arms murmuring comforting sounds while Robert called an ambulance.
We saw her off in the ambulance and waited for an hour until her husband got home (a little drunk on payday) and took him to the hospital. Afterwards I went into a little shock myself, but was OK in a short while. t is my nature to help. It is my nature to nurture. When confronted by a situation in which someone needs help, I will walk in and do my best to help. Interestingly enough, from that day on, the neighbor woman never spoke to me. If she saw me coming she would cross the street. Too embarrassed? Indebted? Never will know.
So all this "about me" and how good I am, is not to brag but brings me to my current topic. I help Gregory too much. If only I could wait and not rush in to help him, to lessen his frustration, to ameliorate his pain. For example, this morning he was getting dressed, I was at my computer, and he comes out of the closet carrying two shirts. One of them is mine. Often he forgets which side of the closet is his.
So I gently say, pointing, "That shirt is mine," trying to anticipate his actions.
To which he replies, "I know."
"Then why are you carrying it?"
"It was just there."
I might mention that he has problems getting dressed. Often he doesn't know the names of underpants or undershirt let alone which is the front. Once in a while he will forget he has one or the other on already and ends up wearing two or three undershirts or underpants.
When he comes out of the closet nude, not sure of what to do, I say, "You need to put on your underpants and an undershirt." Often I just say, "Underpants!" More often, I get up and point in the drawer where they are stored.
Even when I lay out his clothes, he doesn't always see them, or gets fixated on one or the other, or is thinking, "I need a shirt" so he goes back into the closet looking for a shirt, with the one I laid out still sitting on the bed, and can't find a shirt while looking through the area where the pants are hung.
So when I see him going off in these erroneous directions, I jump in with a suggestion for the correct action or behavior. This often serves to confuse him and then with his lack of active and/or passive language, i.e. speaking and/or understanding, we are not able to solve or explain the situation. Intermittently, my advanced comments do help, which serves to frustrate me more.
I get frustrated, he gets more confused. I get angry, he goes quiet. Sometimes, if I am tired, I get rude and very infrequently I "rage." My teacher self feels the failure. I want to disappear and my guilt sets in. One thing in my favor is that I am able to apologize pretty quickly.
So I berate myself with, "When am I going to learn. Why do I always jump in too soon. Why can't I just wait until he does wrong and then help. No babies are dying here so why not just chill and wait it out?" But I am helpful. That is my nature. Maybe next time I will be able to hold back and follow my new self instructions. I'll let you know if I get there!
Post Script (Disclaimer: Sometimes my assistance has to be very basic.)
In the middle of proof reading this post, Gregory was sitting on the "pot" making pain type noises. I asked, "Are you OK?"
He replied, "No. I think you might need to poke my butt." This is his way of saying that either his hemorrhoids are acting up or his anus area is irritated and sore because he is not always methodical in cleaning himself after a bowel movement. I check it out and if necessary begin a regime of putting cream on the affected area. I don't mind doing these personal things but try not to worry too much about the day when he becomes incontinent.
On checking this time, he had totally forgotten to wipe. So I cleaned him up and put on the cream. Then I had him sit on the toilet and asked him to kick off his shoes. He knew how to do it (this time.) Then I had to help him take off his jeans because he got confused. I also took off his underpants and showed him the mess, saying, "Looks like to forgot to wipe altogether." ME: Neutral, non-judgemental voice, he didn't feel too bad. HIM: "I can't imagine."
While I was away getting a clean pair of underpants, he decided to wipe. But he was wiping a clean ass on which I had applied healing cream, so I had to do it again. Because he already had on his sox, he didn't know how to put on a fresh pair of underpants. The order was wrong. I assisted. He was able to get his jeans and shoes back on. He thanked me, apologized for my having to do that. I assured him, "No problem. Happy to help"
So you see, sometimes it is obvious when and how to help. Other times it is not. Do you blame me (even though I blame myself) for getting confused, frustrated, angry, guilty, etc.
For example, walking down the street, woman in front stumbles and falls, purse empties. I will go into immediate action to make sure she is OK while at the same time making sure the content of her purse do not go too far astray. I will offer my handkerchief if her nose is bleeding or her hand got scrapped.
I will not only give physical comfort but also try to make sure she is not too embarrassed. After all accidents are accidental but we still seem to get embarrassed at our behavior. Sometimes people do not want help in situations like this and one must respect that. So after inquiring, I back off.
If someone looks like they are having a hard time, perhaps while sitting on a park bench, I will inquire about their needing help. Shall I sit with you? Shall I call someone? Can I help you home?
When we lived on Roscoe, Mary lived in one of the apartments. She was in her 80's, indigent, as close to being a homeless person as one can get while still having a home. She lived with her adult daughter who was developmentally disabled and prone to alcoholism and violence.
I would always say hi to Mary, who spent a lot of time sitting on the front stoop. Sometimes we would sit and talk. Once she had just returned from a neighborhood church that had free lunch and bingo on Wednesdays. She had won a flowered cup saucer as a prize and offered it to me. I thanked her but figured she could use it more than I, I now wish I had taken it as a memento, maybe that would have made her feel good.
One day, when I was leaving for work, I spotted Mary sitting on the stairs of the back porch. She looked very pale if not white. I sat down next to her and we were silent together for a while. "Are you OK."
"Yes, just a little tired."
"Are you sure. Can I help you?"
"No. Thanks. I'll be OK after I sit here a while." I left for work.
Mary died later that day. At least I was able to offer some comfort, if not unspoken love.
Even in very difficult situations, I am able to be strong and helpful. Once while living in New York City, my upstairs neighbor fell down the stairs from her second floor landing. She ended up on my landing with her face caught between the open door and the wall. I heard the crash and went running.
When I saw what had happened I called to Robert, my then lover, bring a blanket! I know you are not supposed to move a person but I did after assessing that she would possibly choke on her blood in this upside down, wounded position. I talked calmly all the time, inquiring about her pain, making sure my moving her wasn't complicating something like a broken neck, wrapped her in a blanket and held her in my arms murmuring comforting sounds while Robert called an ambulance.
We saw her off in the ambulance and waited for an hour until her husband got home (a little drunk on payday) and took him to the hospital. Afterwards I went into a little shock myself, but was OK in a short while. t is my nature to help. It is my nature to nurture. When confronted by a situation in which someone needs help, I will walk in and do my best to help. Interestingly enough, from that day on, the neighbor woman never spoke to me. If she saw me coming she would cross the street. Too embarrassed? Indebted? Never will know.
So all this "about me" and how good I am, is not to brag but brings me to my current topic. I help Gregory too much. If only I could wait and not rush in to help him, to lessen his frustration, to ameliorate his pain. For example, this morning he was getting dressed, I was at my computer, and he comes out of the closet carrying two shirts. One of them is mine. Often he forgets which side of the closet is his.
So I gently say, pointing, "That shirt is mine," trying to anticipate his actions.
To which he replies, "I know."
"Then why are you carrying it?"
"It was just there."
I might mention that he has problems getting dressed. Often he doesn't know the names of underpants or undershirt let alone which is the front. Once in a while he will forget he has one or the other on already and ends up wearing two or three undershirts or underpants.
When he comes out of the closet nude, not sure of what to do, I say, "You need to put on your underpants and an undershirt." Often I just say, "Underpants!" More often, I get up and point in the drawer where they are stored.
Even when I lay out his clothes, he doesn't always see them, or gets fixated on one or the other, or is thinking, "I need a shirt" so he goes back into the closet looking for a shirt, with the one I laid out still sitting on the bed, and can't find a shirt while looking through the area where the pants are hung.
So when I see him going off in these erroneous directions, I jump in with a suggestion for the correct action or behavior. This often serves to confuse him and then with his lack of active and/or passive language, i.e. speaking and/or understanding, we are not able to solve or explain the situation. Intermittently, my advanced comments do help, which serves to frustrate me more.
I get frustrated, he gets more confused. I get angry, he goes quiet. Sometimes, if I am tired, I get rude and very infrequently I "rage." My teacher self feels the failure. I want to disappear and my guilt sets in. One thing in my favor is that I am able to apologize pretty quickly.
So I berate myself with, "When am I going to learn. Why do I always jump in too soon. Why can't I just wait until he does wrong and then help. No babies are dying here so why not just chill and wait it out?" But I am helpful. That is my nature. Maybe next time I will be able to hold back and follow my new self instructions. I'll let you know if I get there!
Post Script (Disclaimer: Sometimes my assistance has to be very basic.)
In the middle of proof reading this post, Gregory was sitting on the "pot" making pain type noises. I asked, "Are you OK?"
He replied, "No. I think you might need to poke my butt." This is his way of saying that either his hemorrhoids are acting up or his anus area is irritated and sore because he is not always methodical in cleaning himself after a bowel movement. I check it out and if necessary begin a regime of putting cream on the affected area. I don't mind doing these personal things but try not to worry too much about the day when he becomes incontinent.
On checking this time, he had totally forgotten to wipe. So I cleaned him up and put on the cream. Then I had him sit on the toilet and asked him to kick off his shoes. He knew how to do it (this time.) Then I had to help him take off his jeans because he got confused. I also took off his underpants and showed him the mess, saying, "Looks like to forgot to wipe altogether." ME: Neutral, non-judgemental voice, he didn't feel too bad. HIM: "I can't imagine."
While I was away getting a clean pair of underpants, he decided to wipe. But he was wiping a clean ass on which I had applied healing cream, so I had to do it again. Because he already had on his sox, he didn't know how to put on a fresh pair of underpants. The order was wrong. I assisted. He was able to get his jeans and shoes back on. He thanked me, apologized for my having to do that. I assured him, "No problem. Happy to help"
So you see, sometimes it is obvious when and how to help. Other times it is not. Do you blame me (even though I blame myself) for getting confused, frustrated, angry, guilty, etc.
Saturday, April 21, 2012
Grateful Series
Although this BLOG is my place to process, rant, and share; I keep telling myself that I should write as well about things when they feel good, are going well, are successful.
Today, I am grateful that Gregory was able to get most of his breakfast together. I really mean it. He came and appropriately asked for help when he couldn't figure out how to get the fish out of the open tin and onto his crackers, he wasn't sure what was missing in his bowl of cereal and fruit that was lacking the soy milk, and he needed help figuring out that a tea bag is necessary with hot water.
But I really am grateful that he asked for help, did most everything else without my help, that I did not loose my patience, that my voice while helping was even, loving, and respectful, and that I do not feel like a train wreck. It's going to be a good day!
Today, I am grateful that Gregory was able to get most of his breakfast together. I really mean it. He came and appropriately asked for help when he couldn't figure out how to get the fish out of the open tin and onto his crackers, he wasn't sure what was missing in his bowl of cereal and fruit that was lacking the soy milk, and he needed help figuring out that a tea bag is necessary with hot water.
But I really am grateful that he asked for help, did most everything else without my help, that I did not loose my patience, that my voice while helping was even, loving, and respectful, and that I do not feel like a train wreck. It's going to be a good day!
Thursday, April 19, 2012
A Call for Help
Hi. Diane. Good talking with you on the phone, you made me feel very welcome. I will try to describe my vision of what I had in mind and would appreciate your advice completely.
Gregory, my life partner of over 37 years was diagnosed with Young Onset Alzheimer's Disease. We have been coping with this for close to ten years now and while Gregory is still fairly independent, he has begun to fail enough that I feel a "companion" would help to make our life easier. At this point in time he has difficulty with language and cognition. For example I have had to begin helping him put together his breakfasts and sometimes his lunch while at other times he does well by himself. He doesn't always know what clothes to choose to reflect the season or weather. He used to go for long walks by himself, never got lost, but recently got lost in our condo building when trying to return a shopping cart to the lobby. He ended up on the 9th floor. It didn't dawn on him to use his cell phone (which he always wears) to call me. It didn't dawn on him to get back on the elevator and push "L" or "4" which is the floor we live on. Therefore I have been afraid to let him go on walks and he hasn't had the "courage" to initiate a walk for himself. Same with his going swimming in the building health club. I used to be able to send him to Whole Foods with a list of two or three items. No more. I used to be able to spend time curating my Michael's Museum which is now a permanent exhibit at Chicago Children's Museum on Navy Pier and recently have had to take him along every time. I used to be a Supernumerary, acting extra for the Lyric Opera of Chicago. I would make an easy dinner for him to warm in the microwave but do not think that I could leave him home alone now.So with that description in place, this is my vision. Gregory (and I) need him to have a companion with whom he could spend time while I am away. Sometimes it would be for a few hours and sometimes it would be for a morning, afternoon, and/or evening. They could go places, eat out, see a movie, grocery shop. The student/companion could do his homework while Gregory is working on drawing, napping, or reading. The companion could answer simple questions, give simple directions, help Gregory on the computer, depending on the time of day help with his getting dressed or getting ready for bed. Some help with simple meal preparation might take place - like making a sandwich or salad or warming up a dinner I've prepared. The companion could be more ambitions with meals if he desired.The type of person who would be ideal for this position is a gay identified male, intelligent, sensitive to Alzheimer's needs, trustworthy. In turn I could offer an "interesting" experience with a kind, gentle, loving man in a clean, comfortable, attractive, intellectual environment/home setting. We would schedule ahead of time around the student's classes and needs. While this is new for me, I would have to see how to proceed and slowly the student could take on more responsibilities and therefore earn more money as we develop a relationship over time. I could envision a semester, year, and /or college career relationship that is sensitive to the student's academic and personal needs as well. I have no idea how much to pay this person.Diane, thanks for your help with this. If you have any other questions please call.
Friday, December 9, 2011
Beep Beep Beep
Very often Gregory backs himself cognitively into a corner and once there cannot get out my help.
Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.
I must be more careful to "signal when backing," BEEP BEEP BEEP.
Very often I back Gregory into a corner and once there he cannot get out by himself or with my help.
I must be more careful to "signal when backing," BEEP BEEP BEEP.
Saturday, November 26, 2011
Conversations
Sometimes I will have a conversation with Gregory after a trying exchange. I will explain why I reacted as I did and how I plan to try to react in the future. I explain my rational. Most likely he does not remember the conversation but I cannot say for sure that he doesn't. What I do know is that I cannot bring myself to change my behavior or approach to him without trying to explain it. Possibly it is my way of explaining to myself what I need to do to be a better caregiving partner and possibly my way of holding onto our relationship as a "couple" rather than being an individual making unilateral decisions. Gregory seems to appreciate my sharing my feelings with him.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
This is how one such "conversation" went last night. While he was not remembering how to put on his night shirt, brush his teeth, or swallow his pills I held back and said or did nothing. I have found that if I try to anticipate his needs, guess his needs, or intervene too soon ... I only serve as a further distraction. Sometimes given enough time he will solve his own problem. Periodically I tell him that "I am holding back to give you space." He seems to appreciate that.
I have decided (for now) and told him that I do not think it is fair or respectful to him when I take over without being asked. I reviewed that we have talked about previously about my helping often being more of a distraction and hinderance than a help. I told him that if he needed help, he needed to ask for it and I would give it freely, gladly, and supportively.
But I just need to stop jumping in too soon (especially if it isn't a matter of safety.) This is a very difficult stance for me because it is very difficult for me to just watch or see him suffer and do nothing. He may or may not remember to ask for help but I will mention this every now and then as a possible reminder. Obviously I will also be monitoring his needs and make changes as needed. For example if he continues having trouble swallowing his medications and vitamins, I have found a liquid substitute. I just don't want to assume that it is needed now.
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