FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Monday, September 30, 2013
This morning Gregory came into the bedroom. Something is wrong. He had been trying to take his morning pills in the kitchen but his glass of water was in the bedroom. Sometimes, when I am in the kitchen with him, I remind, "Your water is in the bedroom." Sometimes this helps, other times it doesn't. Other times I walk him into the bedroom and point at the water. Sometimes this helps, other times it doesn't. Still other times I take him over to the nightstand and hand him his water. Still yet other times I bring the water into the kitchen to avoid all this confusion. Either way, he does not associate having a glass of water with part of the process of taking his pills. At least not all of the time and now-a-days less and less.
Next he was at his table in the living room (which he cannot associate by name as in "Please go put this on your table.") fumbling with his reading glasses. He put them on his glass case, then next to his glass case, then under his glass case. I helped, "Put them IN your glass case." Didn't help so I backed out. This upset him so I explained, "No problem ... I tried to help but it didn't help so I backed off ... No harm done ... No babies are dying ... I love you ... That is all that matters." To which he replied, "OK."
When he sat down to read the newspaper, I realized the problem. He had some vague idea that he needed his reading glasses to read the newspaper but didn't connect the pieces, i.e. get glasses, sit down in front of your newspaper, put glasses on, read the newspaper. Instead, after the previous short circuit, he just sat in front of the newspaper confused. Again, I tried to help. I asked, "Can you read the newspaper?" "What?" "Can you see the newspaper?" "What do you mean?" So I went over and got his glasses and handed them to him. "Yes, I was going to get my glasses," he replied. OK.
Now how to handle all of this may seem obvious to you. And what I should have said, or not said, may be what you are thinking about. And I too, in looking back, realize several different ways I could of handled this. And maybe next time I will be able to handle it differently. At least this time I didn't get angry, or rude, or short, or impatient. But also I wasn't helpful. I also realize that no matter what I do, being helpful most often backfires on me.
And don't judge until you are the one trying to figure out how to go about ANYTHING with a person who is fairly advanced in Alzheimer's.
A final example. This morning he got his undershirt and underpants on correctly but had his sweatshirt on backwards. He realized this and corrected it. Next he got his sweatpants on backwards and corrected it three times only to have them on backward again. I helped, "You keep putting them on the same way. Try turning them around." So he held the pants up in front of himself and turned around. Not the pants but rather his body. Then holding the pants in front of him (oriented incorrectly) he walked forward and then backward and did this two more times. I got up and using his hands, slowly helped him to turn the pants around the correct way, in my mind trying to demonstrate the process. "Now try them on I suggested." He did, they were on the right way, but I don't think he really understood what had happened.
Somehow, I keep going.
This article makes me feel only a little better but when I fell "empty" I equate it with "sad." It discusses emptiness as "an infinitely open space that allows for anything to appear, change, disappear, and reappear. The basic meaning of emptiness, in other words, is openness, or potential." and for the most part, that makes me feel sad. Alzheimer's does that! It helps you focus on the negative rather than the positive. I have been working on changing that for a long time now. Sometimes it works, other times it doesn't.
THE MEANING OF EMPTINESS
—Tsoknyi Rinpoche, from The Best Buddhist Writing 2013 http://www.shambhala.com/
“Emptiness” is a rough translation of the Sanskrit term shunyata and the Tibetan term tongpa-nyi. The basic meaning of the Sanskrit word shunya is “zero,” while the Tibetan word tongpa means “empty”—not in the sense of a vacuum or a void, but rather in the sense that the basis of experience is beyond our ability to perceive with our senses and or to capture in a nice, tidy concept. Maybe a better understanding of the deep sense of the word may be “inconceivable” or “unnameable.”
So when Buddhists talk about emptiness as the basis of our being, we don’t mean that who or what we are is nothing, a zero, a point of view that can give way to a kind of cynicism. The actual teachings on emptiness imply an infinitely open space that allows for anything to appear, change, disappear, and reappear. The basic meaning of emptiness, in other words, is openness, or potential. At the basic level of our being, we are “empty” of definable characteristics.
Friday, September 27, 2013
Hope all is going well with your studies, and your assistantship. We are doing as well as can be expected. If you've been reading the BLOG (not expecting such) you will know what's going on. G continues to decline but I am continuing to rise above it in his support. We miss you but honestly do not think of you too often if only because we need to let you move on. You were the first companion and not only that you proved to be a special, loving person, so you will always hold special place in our hearts.
Thursday, September 26, 2013
Click here t o go to caregiver.com to read the entire article. It is an excellent overview of the general stages of Alzheimer's although each person demonstrates them in their own way and in their own timeframe. I would place Gregory, for the most part, at Stage 6 out of 7 but being young when he was diagnosed, he is completely healthy!
I am allowed to post the first paragraph. To read more click the above link.
You can read the entire article online but the printable version does not work so if you want me to, leave a comment and I will send you a pdf or WORD document of the full article.
Monday, September 23, 2013
FAITH IS CLEAR ASPIRATION
When the Dharma and one's being have truly mingled, then there is perfect faith. Faith also implies aspiration, a sense of longing. When we long to become very rich, for example, we do everything necessary, undergo great hardship, and expend a lot of energy to achieve this goal. The same is true for wishing to become famous or to acheive any other worldly goal: if our aspiration and determination are strong enough, we will manage to achieve what we want. This is a very powerful quality. Similarly, with faith there is a strong motivation and wish to achieve something, and a natural understanding of the drawbacks of not having this sort of aspiration. When faith has become truly blended with one's mind and become part of it, then one's Dharma practice naturally becomes genuine and pure. This is what is meant by the "perfect Dharma." This clear aspiration to practice the Dharma is what we call faith.
Saturday, September 21, 2013
Wednesday, September 18, 2013
Jane's "Between Fire/Smoke" in video
To purchase "Between Fire/Smoke"
Jane's Web Site
Monday, September 16, 2013
I always appreciate your comments on my BLOG. What you usually see here are the extremes of my life. I use the BLOG writing to process, calm, grieve. You see me when I am at my lower ebbs.
But a large part of our life is good. I do not write about the good things, or the blessings, or those parts of our life for which I am grateful. Maybe I should try to do that more often.
Gregory continues to live a happy, contented, protected life and for the most part, I cope.
P.S. Just started: michael a. horvich quotes Try it!
My "michael a. horvich cares about alzheimer's" BLOG just reached 18,000 hits since it began in July 2010.
It pleases me that so many family, friends, and visitors to the site have been able to keep up on Gregory's journey as I walk the path with him and perhaps been helped with similar journeys of their own.
The fact that we are a same sex couple facing this disease is important but after that it disappears and our story is much like anyone else facing a dementia devastating disease.
Please help me reach more people who might benefit from my writing by sharing with your family and friends. Wow, if this could go viral I would love it.
I am about to publish a second volume of poetry, the first can be purchased on AMAZON.
Also, I am currently working on Gregory and my memoirs. It is called: "GYROSCOPE: An Alzheimer's Love Story." If you have any publishing connections I would appreciate any leads.
Sunday, September 15, 2013
Gregory was getting dressed yesterday and he got the giggles. He couldn't figure out why his sox didn't fit correctly. He turned them around and it still didn't feel right. He thought this was quite funny. I pointed out that he had his sox on his hands ... not his feet.
Memory is another thing.
He asked if the pile of clothing on the bench (where I put his underwear and sweats every morning) were mine or his. When I explained that they were his clothes, in the same place every morning, he began getting dressed.
He proceeded to forget the underpants. On being prompted to put them on first, he did not know how to get into them ... beginning with backwards ... followed quickly by both legs in one hole. With help, he figured out what to do.
Sweat pants went on backwards. With help, he figured out what to do.
For the first in a long time he got on his undershirt and sweat shirt correctly the first time.
If he had to name any of these foreign objects, he would not be able to.
He is currently reading his NEWSPAPER at his TABLE wearing his UNDERPANTS, UNDERSHIRT, SWEATPANTS, and SWEATSHIRT.
Lord (if one exists) only knows the comprehension level of his newspaper reading. He cannot answer any questions about it and cannot share any of what he read. Now and then he will bring the paper to me to show me a picture.
I am currently writing this BLOG, flumoxed although calm. The cats are chasing each other around the condo. Our day has begun.
Friday, September 13, 2013
Thursday, September 12, 2013
When its weight in rocks is my life's daily pain?
Screaming NO NO NO in my sad, lonely silence
Until my throat and breathing cries NO NO NO.
Overwhelmed. Devastated. Exhausted. Sad.
Tears of blood flowing, washing down my face.
With my emotions which are no longer valid to him
But still oh so valid for me, oh so valid, oh so real.
He does not cause this, but I am brutally caused.
He does not control, this but I am cruelly controlled.
Not understanding even the words I very carefully use
Nor the explanations I still try to give, to help, to share.
We sit at the restaurant table with our closest friends
I hold his hand, stroking, trying to help him be involved.
Love cannot describe the immensity or the agony of my love
That no longer soothes but only torments and tortures.
How often can I cry out to the mountains, suffering
When its weight in rocks is my life's daily pain?
We have always had lamps by our bedside. Perhaps the new condo was a little darker then we were used to, what with the concrete ceilings and all, so we added two "up lights" on top of my computer desk and two on top of the bookcases on the other side of the room.
The switch on the wall controls, as in most modern buildings, one side of each double outlet. So when plugging in your fixtures, use the correct side of the outlet and you can control all of the fixtures in the room with one click.
I used to call them lamps but in the architecture world, lamps refer to bulbs while fixtures refer to lamps. Get it?
Now the switch concept works well but when you are in bed, finished reading, half asleep and ready to call it quits for the evening, getting out of bed is a pain. You could pop out of bed and switch them off individually or at the wall switch by the door to the bedroom.
When the need arises to turn on a light during the middle of the night, one could kill themself in the darkness on the way to the lamp or wall switch.
Being a creative person, I rigged up the bedroom lighting into two switched extension cords, one of which controls the lights on Gregory's side with the switch at his bed table and the other on my side. This way we could turn off all the lights at bedtime (and on if necessary during the middle of the night.)
In the morning turn them back on at our bedside tables and the entire room of lights can again be controlled by the switch on the wall.
Following all this?
Slowly Gregory could not figure out how to turn off the lights on his side of the room. He could not locate the switch fastened to the back of his table and if he could find it, did not know how to work it. One night he could, the next he couldn't. It was a case of diminishing returns with the "not able" increasing and the "able" decreasing. Finally I would hop out of bed and do the light thing.
Next, I discovered a system at the hardware store whereby the extension cords could be plugged into a remote button. My side worked the same way (since I do not have Alzheimer's) and Gregory got this little box where he just had to push the ON button or the OFF button to control his lights. I was so hopeful.
The new system worked for only a little while and not without confusion. Which one of the buttons was the ON button and which was the OFF button (even though clearly marked.) And, "Where did I put the damned box anyway. Can't find it."
I felt bad taking over the lamp lighting ceremony but Gregory didn't seem to mind. First I did my switch then I pushed the buttons on the little box to do his side of the room. "Good Night. Love you."
Next I got to thinking, in my "Control that in life which you can since there is so much you cannot," mood. Wouldn't it be nice if I could control all of the lights, since I was now in control of them, with one switch instead of several plus the little box. In high end homes, often there are additional switches on the wall by each side of the bed in addition to the wall by the door to control the outlets.
Wouldn't that be nice just to roll over and with one flick of a switch control all of our bedroom lights? I had our electrician in for another small job and proposed my plan to put a switch on the wall by my side of the bed. "Can be done he said but you would have to move your computer desk so I can get at the outlets behind and run the new wire."
I was not about to unload the desk and all of its millions of wires for the "wireless" network so I killed the idea. But my mind kept working and eventually I came up with a way of using those same switched extension cords to unite all of our fixtures. It works. All I had to do was plug Gregory's cord (with switch on) into my cord (with me controlling on and off,) attach it to my night table and now I fully am in control. Every night when I say "Good Night and Love You" I feel a little spark of joy at being able to control all fixtures with one flick.
P.S. You may be thinking that the bedroom looks like a wired mess with all these extension cords, which any electrician will tell you can be dangerous. Well no. They are minimally few, encased in wall mounted moulding channel covers, and as safe as can be. My dad would be proud of me (considering he was an electrician.)
Wednesday, September 4, 2013
On the other hand we will live to see a new day, and in the morning the problems seem tolerable, and maybe, just maybe we will find the fire escape or the fire department will arrive in time.
Brain damage will make it increasingly difficult for the person in your care to ask for help. Part of the difficulty is in forming the thought and finding the right words. And partly it's a disappearing awareness of having any problems. What this means: You'll need to become an ever-better anticipator. You've probably already discovered the benefits of a predictable routine for the day and for each activity within the day. Adjusting your language helps, too. Avoid asking, "Are you ready to . . . " "Would you like me to . . . " "Are you hungry?" Instead, rephrase questions as matters of fact: "It's time to . . . " "Now let's . . . " "Your dinner is ready."
Monday, September 2, 2013
SO FAR THIS MORNING: Gregory could not take simple directions on how to get his shaver to stop squeaking (at least he did figure out how to plug it in) so he had to wait until I finished my use of the bathroom (read taking a dump) to help him. We are not shy so use the bathroom together. It actually gives me the opportunity to monitor him without seeming like spying. But even my private moments have become his.
Next I had to remind him to put on deodorant and face cream. He could not find them so I opened the medicine chest and pointed. He was able to put the correct product on the correct area of his anatomy so I guess I should be grateful.
Then he put on his underwear (I missed noting if they were right side or backwards but guess that doesn't really matter) and sweats without my help. Fist time this week! So I guess I should be grateful. Doesn't necessarily mean anything for tomorrow.
As he was leaving the bedroom I mentioned, "Your paper is on your desk."
He headed towards the front door. I called him back and said, "Your (corrected the word) NEWSpaper is on your DESK."
He headed toward the front door again. "On your desk." "WHERE YOUR NEWSPAPER IS EVERY MORNING! Do you know where your DESK is?"
"Yes, out there."
"Yes, out there," I reinforced.
Then the numbness, and tears, and confusion, and not knowing how to "fix" this type of interaction, and the fear of the future, and depression (and only a tiny bit of anger) follow.
Then the processing for the BLOG begins. Luckily I had made my first cup of coffee before all this began.
Simultaneously through all this Emma, my kitty (GiGi is Gregory's kitty,) brings me her Krinkle Ball so we can play fetch. A little bit of unqualified love from my kitty and processing from my BLOG make me feel a little better.
Perhaps making some signs for important places that Gregory does not seem to be able to make associations between the word and the place would help? Don't feel really optimistic about this but I will try.
Perhaps I need to make sure that I do not begin to meet my own needs (like taking a dump) until Gregory is finished with all of his and settled. Problem being that often when I think he is settled, a new aspect of getting settled doesn't work for him. But I will try.
At least I was not mean to him. I think I appeared patient on the outside but even feel guilty about what was going on inside, isn't that silly? I will try.
Last night we watched "Call for the Midwives" on PBS, a British program about post WWII and a group of midwives and nuns in England. Excellent second season.
A baby is born with Spina Biffida. Medical know how will make the baby's life as comfortable as possible but one of the nuns talked about the early days when the best thing to do for the baby was to help it die comfortably. Even in the church, that was acceptable.
After trying to help the parents but failing to help them deal the diagnosis, the head nun tells the grieving midwife, "Sometimes one has to admit defeat and move on. There is a lot more of life that needs to be lived."
Today, this came across my mail:
With regard to one’s behavior, one must relinquish all the limitations implied in subject-object duality (gzung ’dzin gyi la dor ba). One should abandon all ordinary ways of assessing outer and inner phenomena, and the engagement or withdrawal of the mind with regard to “good” and “bad.” One must not, through mindless clinging to sense objects, stray into the five ordinary mental poisons. For when approached with skillful means, all are but the display of the great and perfect equality.
—Jigme Lingpa, from Treasury of Precious Qualities: Book TWO!
Meanwhile, this is a list I have been keeping for a while.
GOING GOING GONE
Taking pills - comes and goes.
Putting a belt on - usually gone.
Using mouth wash - gone.
Word bathroom - gone.
Understanding most words - almost gone.
Using most words - almost gone.
Brushing teeth - comes and goes
Reading at bedtime - almost gone.
Going for a walk by himself - gone.
Picking out his own clothes - gone.
Getting ready for bed - comes and goes.
Shaving in the morning - comes and goes.
Getting dressed - comes and goes.
Toileting - comes and goes.
Communicating with words - gone.
Using a fork and knife - comes and goes.
Navigating the food on a dinner plate - comes and goes.
Fastening his seatbelt in the car - comes and goes.
Using a urinal when out - comes and goes.
Controlling flatulence - comes and goes.
Comprehension of TV - uncertain.
Helping make the bed - comes and goes.