Extremely moving post by friend Kate:
http://kateswaffer.com/2015/09/06/women-families-and-dementia-dam2015-day-6/#respond
Here is my reply:
Kate,
Often people will say, "I know exactly what you mean!" and it rings so false and so placating. However, again with tears blurring my view, I know so well almost everything you have discussed in this post. In some ways nothing I can say will lessen the impact and intense sadness you discuss.
Changes in relationships, socialization, sex, movies, TV etc are the easy ones to overcome. Being the one who could still change while the other can no longer, is somewhat less easy but still OK. The slow disappearance of the person you love most in the world is the painful one.
For a long time I softened the concept of "carer" by calling Gregory and me a "Caregiving Team." I used to say to others (not expressing but feeling anger) I WASN'T a caregiver; I was a partner, a friend, a soul-mate, a lover, a spouse - and caring is what you do when you love someone.
While sometimes it was hard to separate the anger from its cause, I always knew it wasn't with Gregory that I was angry.
Fear? Yes. Worry? Yes. My own frustration and confusion? Yes.
Eventually I did become the care giver and now with the Lieberman Center Memory Care Facility in the picture I have become the secondary caregiver but I have won back quality, wonderful time together with Gregory.
It has been a difficult journey but I chose freely to walk beside Gregory on his path and somehow the love wins out, gives extra strength, helps us find the way, stifles the fear and worry, and keeps us going for those we love. It has for Gregory and I as it will for you and BUB and your family.
Fondly,
Michael
Showing posts with label Frustration. Show all posts
Showing posts with label Frustration. Show all posts
Sunday, September 6, 2015
Tuesday, February 11, 2014
Change
It is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.
At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive
I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.
He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home
The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.
And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.
And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.
So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.
Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.
All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.
At Lieberman Center his needs are being met
Although never as well as I was able to meet them.
I was always there for him when he needed me.
Now he waits, in a wet diaper, for the aide to arrive
I go to visit, to hold his hand, to read aloud
At meals I help him cut his food or manage his fork
I rub his neck and his swollen ankles,
And then an hour or two later, I go home.
He continues to live in the moment there
Seems to be enough, and he is content again.
He has never asked why or when or what or where.
The narrow world that is now his life, his home
The minutes, to me, seem to go so slowly
But his days pass easily and without variation.
The place through my eyes is painful to witness
He doesn't seem to notice the difference.
And then the fall and the eight staples in his head.
And the pain in his back and neck from the fall.
And the Grand Mal Seizure with its hospital stay.
But he doesn't complain, or cry, or need.
And the raised rails on his lowered bed,
And the increased difficulty moving around
And the need for the wheel chair to get around
But he doesn't resent, or anger, or demand.
So, it is a new kind of sadness, grieving, despair.
Fear of the future and my ability to support him are gone.
Frustrations at his continued inabilities are left behind.
Anger of how his needs are changing my life do not exist.
Now, with most of my previous emotions put to rest;
Fear, frustration, anger, resentment,
My sadness and grief and despair
Can be more purely felt and therefore more strongly.
All I can do now is wait, patiently wait.
Wait for the end of life to arrive.
His blessed end,
or mine.
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.
Saturday, December 7, 2013
Christmas Sadness
Today was to be the day for decorating the condo for Christmas but.. ..A
How can one find the love, joy, and magic in things Christmas.............L
When the only feeling available to me is sadness knowing....................Z
That the prospect for the sadness to change doesn't...............................H
Seem to exist any more as his abilities...................................................E
Continue to slowly disintegrate into.......................................................I
Confusion, frustration and finally...........................................................M
As we welcome death as.........................................................................E
A way back to peace................................................................................R
And quiet and.......................................................................................... '
Rest..........................................................................................................S
After a difficult morning,
Gregory asked,
"When will you be able to have a little time to yourself?"
Michael replied,
"Never again, to be honest."
GONE:
•Unable to identify when he needs to go to the bathroom.
•Unable to identify verbally whether he urinated, defecated, both, or neither.
•Unable to clean up after defecating or messing self.
•Unable to shower by himself.
•Setting up tooth brush with tooth paste.
•Unable to navigate a plate of food.
•Unable to automatically identify and use a knife, fork, and/or spoon.
•Ability to pick out clothes.
•Ability to zip up jacket.
•Ability to answer a phone.
•Ability to help make bed.
•Ability to understand the mechanics of reading a book.
•Helping with any household tasks.
•Being by himself outside of the condo.
•Being by himself inside the condo.
...and more
ALMOST GONE:
•Comprehension of all types: TV show, musical, theater, book, verbal exchange.
•Use of fork to scoop, spear, or cut.
•Correct orientation of shirt and pants when getting dressed.
•Putting on belt and hitting all loops.
•Following simple directions of any type.
•Turning on light switch.
•Remembering to put on face cream and deodorant.
•Showering self.
•Follow through when understanding what to do without instant forgetting.
•Folding laundry. No longer can do underpants and nightshirts. Sometimes not undershirts.
•Taking garbage and/or recycle to the room at the end of the common hall.
...and more
STILL PRESENT:
•Saying "I love you."
•Sleeping through the night.
•Brushing teeth when tooth paste is applied to brush for him.
•Doesn't mess pants too often.
•Laughs.
•Enjoys being with friends.
•Seems to enjoy movies, TV, theater, etc.
•Swimming.
•Long walks.
•Socially appropriate behavior.
•Calm and content.
...and more
How can one find the love, joy, and magic in things Christmas.............L
When the only feeling available to me is sadness knowing....................Z
That the prospect for the sadness to change doesn't...............................H
Seem to exist any more as his abilities...................................................E
Continue to slowly disintegrate into.......................................................I
Confusion, frustration and finally...........................................................M
As we welcome death as.........................................................................E
A way back to peace................................................................................R
And quiet and.......................................................................................... '
Rest..........................................................................................................S
After a difficult morning,
Gregory asked,
"When will you be able to have a little time to yourself?"
Michael replied,
"Never again, to be honest."
GONE:
•Unable to identify when he needs to go to the bathroom.
•Unable to identify verbally whether he urinated, defecated, both, or neither.
•Unable to clean up after defecating or messing self.
•Unable to shower by himself.
•Setting up tooth brush with tooth paste.
•Unable to navigate a plate of food.
•Unable to automatically identify and use a knife, fork, and/or spoon.
•Ability to pick out clothes.
•Ability to zip up jacket.
•Ability to answer a phone.
•Ability to help make bed.
•Ability to understand the mechanics of reading a book.
•Helping with any household tasks.
•Being by himself outside of the condo.
•Being by himself inside the condo.
...and more
ALMOST GONE:
•Comprehension of all types: TV show, musical, theater, book, verbal exchange.
•Use of fork to scoop, spear, or cut.
•Correct orientation of shirt and pants when getting dressed.
•Putting on belt and hitting all loops.
•Following simple directions of any type.
•Turning on light switch.
•Remembering to put on face cream and deodorant.
•Showering self.
•Follow through when understanding what to do without instant forgetting.
•Folding laundry. No longer can do underpants and nightshirts. Sometimes not undershirts.
•Taking garbage and/or recycle to the room at the end of the common hall.
...and more
STILL PRESENT:
•Saying "I love you."
•Sleeping through the night.
•Brushing teeth when tooth paste is applied to brush for him.
•Doesn't mess pants too often.
•Laughs.
•Enjoys being with friends.
•Seems to enjoy movies, TV, theater, etc.
•Swimming.
•Long walks.
•Socially appropriate behavior.
•Calm and content.
...and more
Friday, December 6, 2013
Many Ahh Ha's
When Gregory is trying to negotiate an activity and I try to explain, he will have an "Ahh Ha" moment. "Oh, I see!" or "OK!" or "I forgot that!"
But then the "Ahh Ha" moment is gone and he has not progressed any further with the activity.
"Get dressed now," I say pointing to his pile of clothes on the bedroom bench.
"OK," he replies starting at said pile but doing nothing.
"There," I point again, "put your clothes on."
"Oh, I see!" standing there doing nothing.
"DO IT! NOW!" I frustrate.
"I will. That is just what I was going to do." Still standing and doing nothing.
Sometimes he will eventually get it and proceed. Often he does not.
There are a number of ways that I can handle this. I put the clothes in his arms. I hand him his shirt. I sit him down and dress him with the result that he finally "gets it" and proceeds. Sometimes I just walk away and tell him, "Do what you need to do." or "Do it the way you want to."
Do you have any idea how aggravating it can be for you when someone behaves like they clearly understand what you are saying or asking and then proceeds to do nothing or something totally different from what you said or asked?
With a three year old, you know there is a learning process. How do you cope when you are involved in a disintegration of learning process? With patience and love and just a little frustration.
But then the "Ahh Ha" moment is gone and he has not progressed any further with the activity.
"Get dressed now," I say pointing to his pile of clothes on the bedroom bench.
"OK," he replies starting at said pile but doing nothing.
"There," I point again, "put your clothes on."
"Oh, I see!" standing there doing nothing.
"DO IT! NOW!" I frustrate.
"I will. That is just what I was going to do." Still standing and doing nothing.
Sometimes he will eventually get it and proceed. Often he does not.
There are a number of ways that I can handle this. I put the clothes in his arms. I hand him his shirt. I sit him down and dress him with the result that he finally "gets it" and proceeds. Sometimes I just walk away and tell him, "Do what you need to do." or "Do it the way you want to."
Do you have any idea how aggravating it can be for you when someone behaves like they clearly understand what you are saying or asking and then proceeds to do nothing or something totally different from what you said or asked?
With a three year old, you know there is a learning process. How do you cope when you are involved in a disintegration of learning process? With patience and love and just a little frustration.
Saturday, October 5, 2013
Actions Mean A Lot
Today Gregory and I went to the Farmer's Market. Evanston's market is large, loud, and busy. The day was hot and humid. I could tell all was taking a toll on Gregory. We (I) decided to stop at the Crepe Stand and have some refreshment. We (I) ordered a savory crepe with tomato, feta, and grill onions topped with a pesto sauce. Delicious.
The crepe was cut in two but served on one plate. We went over to the table area and sat down. I pushed the halves of crepe apart, gave Gregory his napkin, knife and fork. We began.
But Gregory wasn't quite sure how to begin. I prompted, "Use your knife and fork." Didn't help. My first reaction was one of frustration mixed with anger. Couldn't even sit down at the market to have a bite to eat. Life is so complicated. How can I enjoy the day, or Gregory, or my snack when everything is frustrating. Why bother.
Then something else took over. I took the knife away and gently said, "You don't really need the knife. Here let me cut it for you." I did and then showed him that it would be easier to pick up the crepe by scooping the piece with his fork rather then trying to poke it.
After my explanation, he fumbled a little more but did get the process. As I watched my (our) success, my "voice" said to me, "Act with love. Not frustration or anger."
Guess which felt better?
The crepe was cut in two but served on one plate. We went over to the table area and sat down. I pushed the halves of crepe apart, gave Gregory his napkin, knife and fork. We began.
But Gregory wasn't quite sure how to begin. I prompted, "Use your knife and fork." Didn't help. My first reaction was one of frustration mixed with anger. Couldn't even sit down at the market to have a bite to eat. Life is so complicated. How can I enjoy the day, or Gregory, or my snack when everything is frustrating. Why bother.
Then something else took over. I took the knife away and gently said, "You don't really need the knife. Here let me cut it for you." I did and then showed him that it would be easier to pick up the crepe by scooping the piece with his fork rather then trying to poke it.
After my explanation, he fumbled a little more but did get the process. As I watched my (our) success, my "voice" said to me, "Act with love. Not frustration or anger."
Guess which felt better?
Saturday, August 24, 2013
Overwhelmed Through My Tears
Gregory was quite distraught twice today, "Something is not right." He looked sick but it turned it he had to go to the bathroom and didn't realize it until I suggested he do so.
Recently he has had trouble navigating his dinner plate when there are too many types of food on it so I have to figure out how to serve dinner differently.
He no longer knows how a book works regarding where one begins, ends and/or how to turn pages when ready so he can no longer read before bedtime. He cannot tell me or even show me even with my help and suggestions in starting his reading and monitoring where he ends.
I cannot remember when the last time we had a conversation or when he was able to tell me what he needed to tell me short of, "I ....." without my having to guess or give up guessing.
Sometimes I do not know how I can go on like this. I will but I am grieving the current losses. I'll regroup, figure out how to cope, and move on.
Let me say that even with all of our friends, family and the love that surrounds us ... I feel so lonely. So overwhelmed. So frightened. So lonely.
Sorry to unload.
Two poems from a book our friend Roger gave me called "Poems That come to Mind:for those who love someone with dementia" in the haiku or tanka sytle, by Linda E. Austin.
I reach my hand
into the day
searching its pockets
for a penny
to buy a new beginning
• • •
in the deep, dark well
when the light at the top fades
it is only you
and the god you believe in
and sometimes that's not enough
Monday, July 8, 2013
Today
Sometimes Horoscopes make a lot of sense!
July 08, 2013
Aries (3/21-4/19)
- You can't do it all today, which is a fact that will become dramatically apparent almost as soon as you get started this morning. But instead of feeling frustrated, start paring off a few tasks -- and adjust your expectations. Despite the current rumors, you are not a superhero! It's much better to do less and succeed often than it is to always aim for the stars and continually fall short of them. Climbing a smaller mountain is still climbing a mountain.
Saturday, June 22, 2013
Changing Relationships
Every now and then I share my reaction to a quote or daily inspiration (of which I read a number from various sources.) This one talks about emotions.
Your emotion, your indicator of vibration, is indicating the ratio between your currently focused desire and any other belief or thought that you hold about same. When you feel negative emotion, anger about something, or fear... the name of the emotion does not matter, it always means that there is a desire within you that, in this moment, you are contradicting with some other thought.
---Abraham Click this to go to the Abraham-Hicks site.
This one caused me to stop and think about the various emotions that I experience because of Gregory's Alzheimer's. I re-visited a number of emotions and difficult interactions to see if the statement held true and in what seems like an overly simplified way, it does.
EMOTIONS: For example when Gregory is getting dressed in the morning and having trouble yet again with putting on his shirt, I find myself having the emotions of frustration and anger.
DESIRE: My desire is that I want him to be able to do these daily activities of getting dressed.
DESIRE: Helping in the morning is difficult for me. I do not want to spend my energy trying to figure out how to show or explain the process to him when I know that I will probably fail. I do not want to "spin my wheels" in the process of his getting dressed when I know that my help will probably only complicate matters and that short of sitting him down and dressing him, I will fail.
So it is obvious that my emotions (negative) are in relationship to my desires (unreachable and doomed to failure) however, I can do something about creating alternate desires which will bring alternate emotions.
ALTERNATE DESIRE: I want to calmly and lovingly help him get dressed in the morning. I am changing my attitude, which is possible. I am not expecting him to
accomplish predictably something which he is unable to do.
ALTERNATE DESIRE: I am doing the best I can with a disease that is totally unpredictable, some things are possible one day and not on another. If I maintain my patience, even if I am not at my best in the morning, I can help him with gentle explaining and showing and if necessary doing. I am not failing but succeeding. I am changing my behavior, which is possible; I am not trying to change his behavior, which is not possible.
ALTERNATE EMOTIONS: So the new emotions (joy, love, and success) will be in relationship to my alternate desires (that together Gregory amd I are successful in helping him get dressed in the morning.)
If I can change how I perceive my desires, I will be able to change the emotions I experience. Instead of the negative ones of anger, frustration, and failure; I will experience the positive ones of love, joy, success.
Monday, June 17, 2013
Horoscopes and Breakdowns
June 17, 2013
Aries (3/21-4/19)
No one -- not even you -- can be selfless and generous all the time! It's okay to mix a few selfish acts in with your good deeds today. Don't do anything too egomaniacal -- just put yourself first a few times when you usually wouldn't. This isn't an excuse to forget your manners -- you should still hold the door for old ladies, and say 'please' and 'thank you' -- but it is a reminder that you need to treat yourself like the star you are a little bit more often.
• • • • •
While it is hard to say this horoscope is meant for me alone (how many people in the world were born between March 21 and April 19?) it does apply.
Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along with Gregory and his Alzheimer's - every morning, every day, every night.
No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.
In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?
He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.
So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.
Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7.
For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my own needs.
And so tomorrow I die.
This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong.
Another time, when he was getting his night shorts and shirt on, I come back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.
After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I really cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.
Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode.
With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways!
So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine.
When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me.
These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated.
The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.
From the New York Daily News, January 1, 2013:
Last night I cried myself to sleep wondering how I look to the rest of the world. Strong? Together? Even? Supportive? Loving? Giving? While recognizing those adjectives as part of who I am, I was not feeling them. I was sad, lonely, and feeling devastated as I walk along with Gregory and his Alzheimer's - every morning, every day, every night.
I don’t expect you to comprehend this life we’ve been forced to lead; however, I do expect and need your understanding. I want to be treated as normally as possible with the knowledge that my life has been turned upside down. The love of my life is dying before my very eyes. Each day he dies a little more. I’m in a continuous state of grief. It is like having a funeral every day of my life. I try to spare you my pain, but it’s there. If our lifestyle appears to be the same to you, I’m doing a good job of camouflage. I do what I do for Gregory, for myself, and for you.
Michael Horvich (2006)
No one really to turn to in the hopes of making "it" go away. The Alzheimer's? The feelings? The tears? Last night, I just needed to cry, to howl. I needed someone with whom could cry but not someone who would try to comfort me for there is no comforting in dealing with this INSIDIOUS disease.
In some ways, even with loving family and friends, there is no one there for me since the only one who truly matters is Gregory, my life and soul mate of 35+ years, and he is less and less available. To himself? To me?
He seems content, happy, loved. He bumbles along day to day in a good mood, laughing at his inabilities. When I am at my grumpiest, he forgives me or lets me know that my role on the path is a difficult one. He appreciates me, he loves me.
So last night through my tears I heard a voice in my head say, "Tomorrow you die." No not death, but another part of my life gone as I re-evaluate Gregory's needs and try to accommodate them. Accommodate them not in what I consider my recently, once again gruff, impatient, angry way but only with patience and love.
Instead of treating him like an invalid, which I have been avoiding although sometimes without the use of language that is all that is left, I will be there to assist him for what might be or feel like 24/7.
For example when I tell him at bedtime that it is time to brush his teeth, I usually go about the own business of closing up the house and getting the cats and myself ready for bed. Now I will wait to help him find his toothbrush (if he can't this time) and put the toothpaste on the toothbrush (if he can't this time) and run just a little water on the toothbrush to wet it (if he can't this time) and then make sure he knows how to get it into his mouth to begin brushing (if he can't this time) and when he is completely, and successfully brushing his teeth, I'll look back to my own needs.
And so tomorrow I die.
This process is the same for almost every life skill that Gregory attempts. Recently, at bedtime, he had on his shorts but not T-shirt (which I always put in the bathroom and announce, "Your night clothes are in the bathroom.") Having come into the bedroom without his T-shirt, he no longer knew where it was or even that he needed the shirt ... just that something is wrong.
Another time, when he was getting his night shorts and shirt on, I come back into the room to find him with his feet through the arm holes of his T-shirt trying to pull the body of the shirt up around his bottom.
After my having taken the time to get his "stuff" and putting it in the bathroom for him and letting him know where the "stuff" is, you can see why I get a little frustrated (angry?) that even with all my help, it isn't working! And not only the anger but also the fear and worry about what the future will bring (although I try so hard not to worry about the future since I really cannot control it.) "Don't worry about those things you can control and don't worry about those things you cannot!" A Buddhist saying.
Having to do EVERYTHING for us, you can see how easily it is to fall into the frustrated, angry, gruff, impatient, fearful mode.
With Ken, Gregory's companion living with us since April, my life has been a bit easier. But Ken will be leaving at the end of June to go back to Japan and then return to Vanderbilt University to begin his Master's Degree. So last night, I was also grieving not only Gregory but also our loss when we send Ken on his way. We have come to love that man with his gentle, loving, respectful, helpful ways!
So tomorrow I die but know that somehow I will survive. In last night's grief then, I realized that the next step has to be follow through, follow through, follow through. Not on Gregory's part because he is no longer able, but on mine.
When I hand him his vitamins and medications I will wait there until he knows how to begin taking them. When I tell him to "fill your pockets" with wallet, keys etc, I will wait there until he begins doing so (and I will double check after while that he got everything he needed.) I will no longer ask him to wait in the car when I have to run into the drug store for a quick purchase, I will have him come with me. Recently he got out of the car and came into the store looking for me.
These activities and follow throughs will be difficult for me and I will have to learn how to attend with patience and love but they are a necessary next step. And like other "next steps" once I have mastered the step, I feel better able to cope, am less angry, less frustrated.
The additional energy I have to spend in support of Gregory's daily needs is made up for by the less emotional energy I have to spend on anger, frustration, fear, guilt, etc etc etc. So tomorrow I die, but I am also reborn and continue on the path.
• • • • •
From the New York Daily News, January 1, 2013:
- Year ahead: This is a year of personal transformation, and a time when you will feel compelled to review, reassess and restructure your life on many levels. At some stage you can feel cut off from the support you have become used to having and forced to be more self-sufficient, particularly on a monetary level. The role other people play in your life will be highlighted with you realizing their contribution to your life and you in theirs. Your home life takes on a greater level of importance, and you will desire to settle down on a more permanent basis and have more stability and security in your life. Personal growth: Over this year, your world view will continue to expand with you letting go of prejudices you once had and replace them with a broader more accepting view of yourself as well as those you come in contact with. Romantic month: Jupiter the planet of expansion enters your solar fourth House of home and family on June 26th, and stays there until July 2014, a period where you can make favorable changes in your personal life. Power month: March, a positive change in your career can move forward and a personal situation gains momentum to move to the next phase. Your annual new Moon is April tenth, which is the commencement of your next solar cycle. Angel advice: The structure of your life, as well as your values and beliefs, will be challenged this year. As you question the meaning of life and how purposeful your life is, it is important to be open to change and see any forced or unexpected changes in your life as the universe’s way of steering you back on the path you are destined to walk.
- Love, family, friendship: With Jupiter shining its beneficial rays on your personal life from midyear, your focus will be on family and your home environment. The full Moon three months beforehand on March 27th, can provide the energy to be the catalyst to jolt a relationship into reality with a purposeful decision being made, even though plans may not eventuate until later in the year around July or August. There is very much an essence of fate around your love life this year, if it is meant to be there is nothing you can do to stop love from capturing your heart. It can sneak up on you and all of a sudden your life can be different from what it has ever been. Setting up home so you have comfortable surroundings for you and your family will also be high priority this year. You will be conscious of developing healthy bonds with family members and adhere to a schedule of regular contact to stay closely connected with those you love. Friends can suddenly leave your life, for no other reason than you are travelling on different journeys as you seek where you fit within the big picture of life. The first half of the year can present situations you feel impatient about. The second half sees you more relaxed and satisfied as you have a vision of where your life is heading, and although there are compromises to make, you will feel what you give is well worth what you receive in return.
- Career, money, purpose: It is no longer an option for you to go through the paces at work. Over this very important phase with transformational planet Pluto in your solar tenth House of work and purpose right through to the end of 2024, you will strive to make a positive and substantial contribution to the world through your career and business dealings. You now need your career to be more meaningful and to achieve this, some of you will change your career, and others will put more focus on aligning your work with your overall goal of excelling at what you do. Your ambition will be heightened over this period; however, be careful you aren’t too impulsive about changing your path, as a rash move can cause setbacks. It is advisable to think through all the pros and cons of a new endeavor to ensure it is what you truly want to do on a long-term basis before you put action to your thoughts. Ethics and the way you morally handle your business also come into play and at all times it will be best to take the high road, regardless of the actions of others. At the end of December 2012 a fortunate transit occurred with your professional life that can provide a financial bonus. The ongoing challenging squares between planet of sudden changes Uranus and power planet Pluto affecting your career life continue through to early 2015, with two direct degree hits this year on May 21st and November first. If you have not made a considerable change to live a life of purpose by November, a fateful event is very likely. Destiny will take matters out of your hands and place you where you should be. This is a transformational year on many levels, which promises to be eventful to say the least.
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.
Wednesday, January 30, 2013
A Reply to the Reply
B,
Hi. Thanks for the speedy reply. I am not really depressed or anxious so at least for now do not feel the need for drugs, although not opposed. I do get down time, have a wonderful therapist that I spend time with every week, and have many supportive friends in the area. I am sleeping well, Gregory is not wandering or violent or angry and knows me and our home and our family and friends (even though he might not be able to call them by name.) He is happy and contented and often tells me so.
Hi. Thanks for the speedy reply. I am not really depressed or anxious so at least for now do not feel the need for drugs, although not opposed. I do get down time, have a wonderful therapist that I spend time with every week, and have many supportive friends in the area. I am sleeping well, Gregory is not wandering or violent or angry and knows me and our home and our family and friends (even though he might not be able to call them by name.) He is happy and contented and often tells me so.
The problem is trying to keep some sense of normalcy around here when I never know how he will respond or what he will remember or how much he will understand. For example, I can lay out his clothes, no problem, but then he gets more out of the closet, doesn't know how to put them on, or forgets some combination of them. Even when he comes to me for help, short of sitting him down "old people's home style" and dressing him, he cannot follow simple directions, or pointing, or demonstrating. So helping is NO help. That is really what frustrates me.
Also, I am learning to follow that he does not always mean what he says, like when I ask "Are your pockets filled?" (wallet, keys, etc) and he says NO but they are. Or I'll tell him to go to the bathroom right before we are leaving and he will say OK but if I don't see him do it, chances are he doesn't and then as we are walking out the door he'll say, "Oh I need to go to the bathroom."
Honestly don't know what I would do with a companion here 6 days a week. Maybe if we had a larger place, they could be getting dressed while I was in my office or whatever. But it is an intimate condo. When the companions are here I will make a play date with friends, or go shopping, or just be somewhere by myself and work on my poetry at the local Starbucks, or go out to lunch, or go on an adventure. I have a massage once or twice a month. A few times when the weather was still nice, G and the companion would go out and I would stay home by myself which was nice.
It is the day to day that seems to make me nuts. Like asking him to fill the water pitcher before dinner and sometimes he can do it and other times he cannot. If I try to help, that only complicates and confuses him further so I just hold back and let him struggle, which is very difficult for me and him. I often tell him, "It is a question of feel bad now or feel bad later."
Instead of accepting it gracefully and calmly I find anger and "hate" in my heart and I know it shows in my voice and gestures. Sometimes he will say something which uses the best words he can get out but it will be insulting or demeaning. I still react to the words used instead of the hidden intent. Even though I am becomming more and more aware of the fact that he can use any words is a blessing and I don't always reinterpret or translate them into a positive, understanding statement before my emotions kick in and I get angry with him and have hurt feelings.
In summary, what is really getting to me is that in the day to day functioning of our (my) live, NOTHING IS WHAT IT SEEMS!
P.S. I am using these correspondences on my blog because I feel they are valuable to my readers. Names are changed to protect the innocent:-)
Fondly,
Michael
P.P.S.S. We are going to Battle Creed to visit G's family this weekend. I'll send them your love.
Friday, January 25, 2013
More on Cats
They get up on the kitchen counter.
They steal things by carrying them off.
They howl plaintively as if someone was killing them.
They play roughly.
They run around the condo.
They play under rugs.
They play with couch pillows.
They scratch the leather furniture.
They leave their fur on furniture.
They leave their fur on clothes.
They track litter on the floor.
They leave litter smell.
They claw.
They bite.
They chew up things.
They eat shoe laces.
They destroy things.
They are expensive to maintain.
They disrupt your sleep.
They break things.
They ignore you at times.
They stain your bedspread.
They love.
Is it worth it? I am trying to decide. SO many emotions. They do give back but I am having to weigh the pros and cons and so far you can tell who is winning.
Gregory is not able to help with any of their needs let alone any discipline or training, if such a thing is really possible with these two.
I would (will) feel really badly having to take them back to the shelter but I cannot let guilt rule my decision. Also, it is MY decision which is another down of Alzheimer's, no one to talk to, no one with whom to decide.
They steal things by carrying them off.
They howl plaintively as if someone was killing them.
They play roughly.
They run around the condo.
They play under rugs.
They play with couch pillows.
They scratch the leather furniture.
They leave their fur on furniture.
They leave their fur on clothes.
They track litter on the floor.
They leave litter smell.
They claw.
They bite.
They chew up things.
They eat shoe laces.
They destroy things.
They are expensive to maintain.
They disrupt your sleep.
They break things.
They ignore you at times.
They stain your bedspread.
They love.
Is it worth it? I am trying to decide. SO many emotions. They do give back but I am having to weigh the pros and cons and so far you can tell who is winning.
Gregory is not able to help with any of their needs let alone any discipline or training, if such a thing is really possible with these two.
I would (will) feel really badly having to take them back to the shelter but I cannot let guilt rule my decision. Also, it is MY decision which is another down of Alzheimer's, no one to talk to, no one with whom to decide.
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.
Wednesday, November 21, 2012
A Play in A Series of Poems
I have written many pieces of poetry chronicling the path which I have traveled with Gregory, my life partner of over 35 years, who was diagnosed with young onset Alzheimer's Disease some ten years ago when he was fifty five years old. For the most part, the feedback on my work has been favorable.
For a next project, wouldn't it be interesting to try to write a screen play in which the audience would experience what a person with Alzheimer's goes through and what those who love him endure? It probably wouldn't be hard for me to write the screen play because I have so much material from which to draw.
The question, however, is who would want to watch it? Who would want to sit through some 90 minutes with one intermission of heaviness, sadness, frustration, confusion, depression and tears even if laced with love, compassion, insight, and humor?
Wednesday, October 17, 2012
Coffee Time Past
Today "Coffee Time" almost disappeared. Gregory always has coffee at 5:00. He pours this morning's leftover coffee into a mug, adds milk, heats it in the microwave for one minute. Then he selects three or four cookies and sits at his desk studying the sunset taking place on the roof top garden outside the condo window. He has been doing this for two or three years now.
Yesterday he asked for some help so I got his coffee ready for him. Today, he arrived at my desk and asked for help again. This time I told him to go ahead and I would help if he needed me. He returned a few minutes later and told me he was afraid, so I joined him in the kitchen. I still did not want to help so I told him I would observe.
He had placed an empty mug on the kitchen counter, got the coffee pot, and with the pot sitting on the counter, kept tipping it until he could see the coffee in the spout (he didn't notice that you could see the coffee level through the glass pot itself,) but he did not know how to go further. He seemed to have lost track of the mug sitting there.
He went through the same motions of tipping the pot and pointing to the spout. It seemed to make sense to him but he did not know how to proceed. He would notice out loud that there was coffee showing in the spout if he tipped the pot far enough. He actually tried pouring a little bit of coffee on the counter to see if that was what he was supposed to do but stopped saying, "That's not right, is it?" I said nothing.
He did this over and over and suddenly began moving the tipped coffee pot towards the mug but then studied and hesitated and put the coffee pot back down on the counter. Finally he seemed to notice the mug sitting there, made the connection, and poured the coffee into the mug. "That easy, huh!" he mumbled.
Next he knew that he needed to add milk. He got the gallon milk container out of the refrigerator, took off the lid, and went through the "tipping" routine again. Another five minutes worth of tipping, studying whether to pour it on the counter or not.
Then he began returning to the refrigerator, milk bottle in hand, and tried to pour milk into the refrigerator on the shelf where it is stored. Over and over. He returned to the counter and added trying to pour the milk onto the bottle cap. He didn't actually pour it on the counter or bottle cap but repeated the motions over and over asking, "Is this right? Is this how you do it? What is wrong here?" Approximately five minutes of attempted milk pouring.
He kept seeking my approval and I kept saying something like, "I am observing to see what you will do." Eventually I suggested, "You want to pour the milk into the mug." He responded as though he understood what I said but repeated the counter and bottle cap routine several more times. He kept looking to me for help and I kept saying, "I am here with you."
He began rehearsing pouring the milk into the mug. He did this three or four times and finally poured the milk into the mug. He was pleased. "Strange isn't it?" was his observation.
"Yes," I answered.
On the way to collect his cookies from the cabinet he told me, "I love you."
"That was never in question," I responded as I often do, "I love you too."
He hugged my head and said again, "I love you."
"Me too," I replied. After assembling his cookies, he correctly put the mug in the microwave for one minute, and was back on target.
It is very painful for me, but every now and then I have to just wait it out and only get involved if he gets too overwhelmed. This time he was in a problem solving mode the entire time. By watching and letting him try to figure it out, perhaps, if he doesn't get too upset, my not helping allows him to keep his self confidence. It allows me to carefully observe so I can try to figure out what is happening.
While I am writing this, he is enjoying his coffee and cookies. Wonder if the skill will be back tomorrow. If it isn't, I will intervene right away and verbalize what I am doing. Maybe that will help. I keep trying.
Yesterday he asked for some help so I got his coffee ready for him. Today, he arrived at my desk and asked for help again. This time I told him to go ahead and I would help if he needed me. He returned a few minutes later and told me he was afraid, so I joined him in the kitchen. I still did not want to help so I told him I would observe.
He had placed an empty mug on the kitchen counter, got the coffee pot, and with the pot sitting on the counter, kept tipping it until he could see the coffee in the spout (he didn't notice that you could see the coffee level through the glass pot itself,) but he did not know how to go further. He seemed to have lost track of the mug sitting there.
He went through the same motions of tipping the pot and pointing to the spout. It seemed to make sense to him but he did not know how to proceed. He would notice out loud that there was coffee showing in the spout if he tipped the pot far enough. He actually tried pouring a little bit of coffee on the counter to see if that was what he was supposed to do but stopped saying, "That's not right, is it?" I said nothing.
He did this over and over and suddenly began moving the tipped coffee pot towards the mug but then studied and hesitated and put the coffee pot back down on the counter. Finally he seemed to notice the mug sitting there, made the connection, and poured the coffee into the mug. "That easy, huh!" he mumbled.
Next he knew that he needed to add milk. He got the gallon milk container out of the refrigerator, took off the lid, and went through the "tipping" routine again. Another five minutes worth of tipping, studying whether to pour it on the counter or not.
Then he began returning to the refrigerator, milk bottle in hand, and tried to pour milk into the refrigerator on the shelf where it is stored. Over and over. He returned to the counter and added trying to pour the milk onto the bottle cap. He didn't actually pour it on the counter or bottle cap but repeated the motions over and over asking, "Is this right? Is this how you do it? What is wrong here?" Approximately five minutes of attempted milk pouring.
He kept seeking my approval and I kept saying something like, "I am observing to see what you will do." Eventually I suggested, "You want to pour the milk into the mug." He responded as though he understood what I said but repeated the counter and bottle cap routine several more times. He kept looking to me for help and I kept saying, "I am here with you."
He began rehearsing pouring the milk into the mug. He did this three or four times and finally poured the milk into the mug. He was pleased. "Strange isn't it?" was his observation.
"Yes," I answered.
On the way to collect his cookies from the cabinet he told me, "I love you."
"That was never in question," I responded as I often do, "I love you too."
He hugged my head and said again, "I love you."
"Me too," I replied. After assembling his cookies, he correctly put the mug in the microwave for one minute, and was back on target.
It is very painful for me, but every now and then I have to just wait it out and only get involved if he gets too overwhelmed. This time he was in a problem solving mode the entire time. By watching and letting him try to figure it out, perhaps, if he doesn't get too upset, my not helping allows him to keep his self confidence. It allows me to carefully observe so I can try to figure out what is happening.
While I am writing this, he is enjoying his coffee and cookies. Wonder if the skill will be back tomorrow. If it isn't, I will intervene right away and verbalize what I am doing. Maybe that will help. I keep trying.
Saturday, September 29, 2012
Opera or Circus
There is a life
On the verge of which I seem to sit,
Which I yearn just to feel, to touch,
And not just to ache.
Where there is pain
Just under my emotional haze
That carries my sorrow
On the rounded tip of a perching tear,
There are so many events
Just about to happen or not
Which need written their stories or poems
Desperately couched in words not yet written.
There in my oftentimes desperate need
To fashion a clay understanding
A three dimensional model of my world
So I can see it, touch it,
There is the frustration and drive
To keep up with my speeding self
As a major opera house production but
also as a one ring tented circus.
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