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.
Friday, December 31, 2010
Thursday, December 30, 2010
When you live with a person who has a Dementia, you slowly acclimate as they slowly deteriorate. This makes it even harder to measure. The changes are slow, moderate, and sometimes fast. Sometimes the changes will work in reverse but it is more like they "pop up" here and there, now and then, but never consistantly.
This causes difficulty measuring the progress of the Dementia.
Language continues to fail. Most of the time he will begin to say something but after the set up he cannot continue. More and more, if he can't get it and if it isn't obvious to me, we just let it go and don't even try to figure it out.
This causes not only are difficulty measuring the progress but also difficulty predicting the progress.
Cognition continues to fail. He gets confused over simple operations like buttering his toast or deciding where to put the butter in the first place. He emptied the sink strainer then threw it away with the garbage. He was about to go for a walk and I discovered that he did not have his keys. Then I checked and while he had his cell phone holster on his belt, it was empty. His wallet was still in the drawer. Yet his coat, scarf, gloves, and hat were on and he was ready to leave.
I could not even discuss the messed up situation with him because he could not follow and said something like, "I was going to do that next." However, he didn't really know that he did not have his keys on or his cell phone in.
Often now, when I ask if he has his cell phone, he does not know where to look for it. He will search one pocket then the other not remembering that the cell phone should be in the holster on his belt. The look on his face tells me that without seeing the object, he may not even understand what the words "CELL PHONE" mean.
This causes not only difficulty measuring progress but also difficulty predicting the progress and finally difficulty even understanding what form the progress is taking.
Semblance is the word that comes to mind. There is a semblance of order in our life, a semblance of routine, a semblance of a semblance of a life.
semblance |ˈsembləns|. noun. the outward appearance or apparent form of something, esp. when the reality is different : she tried to force her thoughts back into some semblance of order.
Both Gregory and I "try to force our thoughts back into some semblance of order" all the time. Some days we do well, most days we do not.
Where to Hide?
Nowhere to hide. It came out in a punishing sort of way. It caused two-sided tears. Instruct the jury to ignore the previous statement. Can't.
Wednesday, December 29, 2010
Tuesday, December 28, 2010
Monday, December 27, 2010
Friday, December 24, 2010
Tomorrow will be more of the same. Resting, reading, sharing. Dinner of roast turkey, dressing, sweet potatoes, orange cranberry relish, and a salad. Perhaps we will go for a walk again in the snow. For sure a nap will be in order sometime during the day.
This is the first "just Gregory and Michael" Christmas in a long while. We are counting January 10th as our 35 anniversary together and for at least 34 of those we have spent Christmas with family, both our assigned biological and/or our selected Gay one. This year one biological family lives far away and the other is traveling for the holidays. Half of the Gay Family is in Italy spending Christmas and two months on the move. A number of other friends are taking the opportunity to have a low key holiday as well.
Both Gregory and I are looking forward to this down time. Just the two of us, our warm cozy home decked out with holiday flair, and the baby Jesus. As Santa drives out of sight, we can hear him calling, "Merry Christmas to all and to all a Good Night."
Thursday, December 23, 2010
From the site:
The latest issue of SmokeLong Quarterly has gone live, featuring the top 5 picks of the 30-word contest. Over 1,400 stories were submitted; out of those stories about 50 were sent to me, and from those I choose the winners. Congrats to Ted Chiles, Sion Dayson, Kevin O’Cuinn, Jan Ellison, and Patricia Anderson (who, if I had to pick just one winner, would have won for her really great story “Still Life”). ( )
Patricia C. Anderson writes personal essays and short fiction. She has been published in South Loop Review and Good Bird! magazine. She also reads, travels, and trains parrots
* * *
by Patricia Anderson
He was an engineer. Now the watercolor class is all the structure he can manage. He's rustling around the kitchen, way late.
"What are you doing?"
"I'm organizing the bananas."
Wednesday, December 22, 2010
Monday, December 20, 2010
Now "Tick" has a new meaning. When it is too hot or cold in the condo, Gregory will ask,"Can you change the temperature a few ticks." When it is almost 5:00 pm and time for coffee, Gregory will announce, "In a few ticks it will be coffee time." When we have almost reached our destination in the car, Gregory will notice, "We are just a few ticks away." He'll note, "I have just a couple more ticks until I am finished reading my book." Towards the end of dinner he'll say, "Dinner has nicely filled me up but I will finish the last few ticks of salad."
I know what he means, the words are close enough. He knows what he means, the meanings are close enough. Also after having lived together for over 33 years, I can tell his "ticks" from his "tocks." Life and time goes on.
Saturday, December 18, 2010
I took it personally when it was really the big "A" speaking. None-the-less I took it personally. I finished closing up the house and sat, for a while, in the dark living room. I felt myself shutdown as I realized that in spite of our wonderful family, friends, and acquaintances; I feel so alone. Alone as in the end, when you die, you must do it alone. The best I could do was feel numb.
More and more, my conversations, mundane or intellectual, are with myself. Most of the time I keep my observational comments to myself because Gregory will not understand, will have missed the item my observation was based on, will reply in relation to what he was thinking not what I was observing, or I will have to repeat because he wasn't focused and ready to listen. Again ... and again.
I continue to take the risk of having conversations and asking him questions. I still ask him for help, to do something for me. Very often it backfires and I have to explain again, remind when he forgets to follow through, correct his misunderstanding, give step by step directions, or take over myself.
Very often after my reminding or correcting he will reply, "I knew that." When I try step by step directions, he is aware enough that he waits for the rest of the information but when given, gets confused and cannot follow more than one step at a time. When I have to take over, no matter how nicely I do it, it is awkward for both of us.
The alternative is to ask, say, and expect nothing and I cannot believe that is good for Gregory's self confidence. But I have to remind myself that if I believe this is good for him and continue to hold expectations, no matter how minimal, I must also be ready for and risk his meltdown and/or my shutdown.
I think that I have created a fantasy world in which I feel like I am in a relationship that resembles normal. Every now and then the vail parts and I get a glimpse of reality. It looks much like Hell. I hate to be so hard but I think I might be right about this, dear.
Thursday, December 16, 2010
Wednesday, December 15, 2010
Breaking News: NAPA Passed!
Dear Michael -
112,000 petition signatures, 50,000 emails, nearly 10,000 phone calls and more than 1,000 advocate meetings have led us to this momentous occasion. Just minutes ago, the United States House of Representatives overwhelmingly passed the National Alzheimer's Project Act (NAPA). This historic legislation is now on its way to the President for his signature.
Send an e-mail to the President urging him to sign NAPA!
Passage of this legislation is a hard-earned win for the hundreds of thousands of Alzheimer advocates across the nation. With your help, the Alzheimer's Association has made NAPA a top congressional priority - and a significant first step in ending the Alzheimer crisis.
In addition to the human impact on families, the economic burden of Alzheimer's - with total costs of care escalating from $172 billion to more than $1 trillion by 2050 - is simply unsustainable. NAPA will bring help not only to millions of affected families, but also to the fiscal foundation of our country.
Tuesday, December 14, 2010
Monday, December 13, 2010
"I'm not sure what to do."
"What if you prepare your protein, fruit, and tea and then I'll do the oatmeal."
At that point I realized that I will have to make his breakfast for him today. Just the change in the type of cereal he is going to have caused him to become totally disoriented and forget how to do what he usually does to make his own breakfast every morning.
Awkward for me to have to take over, awkward for him being so confused. I wasn't angry, didn't raise my voice or sigh under my breath. I am getting much better. I just made his breakfast. But the mere fact that I had to do and he couldn't do was difficult for both of us.
Do any of these little, passing interactions, experiences really matter? In the big picture of life, does one confused bowl of oatmeal really matter? As long as he can't but I can, does it really matter?
I am reminded of one of the pieces of a live performance we saw by Lily Tomlin, "The Search for Intelligent Life." Her character is a goth, displaced, disenfranchised young girl named Agnus Angst. The piece ends with the girl, while holding her hand over a candle flame, lamenting "Life is nothing. Pain is nothing. It doesn't matter. (Long pause) It matters, it matters, it matters." CURTAIN
Sunday, December 12, 2010
Most often one can do what I call an "Apple Find," like on the computer, wait a few seconds or minutes, or even later that night or the next day, and eventually the brain is able to search and retrieve. Somehow connections still exist and communication, in some form or another, can take place.
A person who IS afflicted by Alzheimer's Disease gets stuck, or lost, or frustrated, or angry. He cannot explain away the difficulty, give you a general idea of what he is trying to say, and sometimes does not realize that he could take you by the hand and SHOW you what he is trying to communicate.
Most often he stares into the distance trying to think, to remember, but the harder he tries the further the idea retreats. Eventually the retrieval not only gets harder but the thought he was trying to retrieve disappears and all is lost.
Frustrating for everyone involved! Sometimes with Gregory, I intuitively know what he is trying to say and after a short wait to give him the chance to come up with the word, I will ask, "Were you trying to ask about ....?"
Usually I can figure it out and both of us are able to avoid frustration. It is getting harder and harder to do this. Some times he just says, "Oh I give up" and he is OK with that. Sometimes I allow, "Oh just forget about it. We'll figure it out later." The irony is that he did just forget it and usually later never comes.
Saturday, December 11, 2010
Gregory is not yet to the point in his Alzheimer's progress that he needs help with his physical needs but I have often thought about the time when he will. As Jan poses at the end of her BLOG, it is even more difficult to have to think of the eventuality of not only needing support with my own physical needs but how that will impact his physical needs being met. Perhaps I should get more involved than I have been in investigating what is out there for when the time comes.
In our case and at this point in time, I am dealing mainly with helping Gregory process, problem solve, make decisions, use language, maintain his heath. In other words, to negotiate his day to day life with dignity. I try to ensure that his life is safe, happy, and dignified emotionally.
This is not always easy especially when I sometimes have to play guessing games to figure out what his needs are. Sometimes he is not sure what his own needs are let alone be able to express them. Other times I am not at my best in dealing with Gregory when my own emotional state is out of balance.
At least both Gregory and I have so far lived our lives with dignity when it comes to family, friends, neighbors, colleagues, business associates, fellow (wo)mankind. Hopefully that should make it easier to live with dignity for ourselves as needs increase.
Friday, December 10, 2010
I replied, "Hanging in there! Currently things seem to be 'even' as I like to say. That means he is coping pretty well with the day to day and I am coping pretty well with him!
We are having a busy but low key Christmas. The house is decorated and we have yet to decorate the ginger bread house and bake some cookies.
We have plans for Christmas activities at The Botanic Garden, The Lincoln Park Zoo, and The Kris Kindle Market. We will invite a few friends in for cookies and tea.
I have purchased some wonderful gifts to give to him and I have also purchased some wonderful gifts for him to give to me.
Things are good. We are blessed."
Wednesday, December 8, 2010
There are large, heavy, mercury glass ornaments of various sizes hanging across the sprinkler system pipe that crosses the living room: shades of blue, green, red, orange to yellow, purple, silver and white.
Three dozen glass ball ornaments are suspended in a spiral from the HVAC duct down the entry hall. They are attached via magnets, attached to springs, attached to alligator clips attached to the balls. The great thing is that the ornaments are all off color, none Christmassy: chartreuse, lime, lilac, purple, pink, black, white, turquoise, etc.
The mistletoe is hanging at the end of the hall suspended below a metal Star with a picture of Santa painted on it. Kiss, kiss, kiss.
A freshly baked ginger bread house sits on the coffee table. It is decorated with a meringue cookie roof, multi-colored bubble gum ridge pole, red and green candy corn fence, spearmint leaf bushes, frosting decorated windows and doors, a candy cane wreath, and a chocolate flavored stones making a cobble sidewalk.
Metallic colored metal words: joy, believe, peace, love, faith, and hope, dangle from magnets on the furnace vent in the hall.
A plastic Santa glows in the guest bath, a plastic snowman lights up the master bath, and a ceramic Christmas tree with plastic beads glows at the end of the kitchen counter.
Three sizes of white lights are wrapped around the balcony railing and plastic candy canes are hung with care along the length of the balcony. A live tree, three feet high sits in the middle with its white lights glowing softly.
In the past, Gregory and I decorated the house together. Now-a-days I do it by myself and he helps when he can. Mostly Gregory sits and watches and takes great joy in seeing the "things" of our holiday get unwrapped and put into place.
A stack of presents gayly wrapped sit on top of my computer console. As usual I have bought some wonderful gifts for Gregory and I have bought some wonderful gifts for me from him. I usually get what I want for Christmas!
Throughout this process, I was very aware of an amazing thing. I was and am feeling blessed, happy, content, and joyful. Alzheimer's is besides the point. To end this BLOG, I'll repeat the words I look at in the hall each night before I go to bed: joy, believe, peace, love, faith, and hope. Merry Christmas to all and to all a good night!
Sunday, December 5, 2010
Saturday, December 4, 2010
The Trouble with Hangers
Hangers Scare Me
There's More to Hangers Than You Think
A day or two ago we had our guest/TV room, bedroom, and closet carpeting cleaned professionally. I'm way to old to rent a machine at Jewel and do it myself. I deserve to have clean carpets. Especially since Mariah, our cat, has gastrointestinal problems (she likes to vomit - hurl - give up the cookies when it comes to hair balls.)
While putting the closet (a huge walk in room, those of you who have seen it will understand) back in order, I took the occasion to make sure Gregory's clothes were in order. There were still a few summer shirts and slacks so I covered them in cleaner bags and hung them at the back. Then I "repaired" several of Gregory's "hanger faux pas."
We use three types of hangers, all white plastic. The light weight (LW) one is for shirts. Two of the light weight (2LW) ones are needed to hang the pants which are a little heavier than the shirts. The one with shoulder pads (SP) is for soft, stretchy shirts. The third is a heavy weight (HW) one for coats, winter bathrobes, etc. You can see that we have this all thought out.
My guess is that you just grab a hanger and hang things up without much thought. Chances are you grab the correct hanger for the job. It is always an interesting activity for me when I itemize the steps of the various activities in our daily life. Try it sometime. You'll be amazed.
Back to the hangers. Using one of the three types (and the doubling of one) should be easy for most people. Not for Gregory. He uses LW instead of 2LW for slacks and it breaks due to the weight. He uses LW instead of HW for heavy coats and they break too. Quantity wise, we have fewer SP and HW than LW. He uses SP to hang pants so we run out of them. He uses HW for shirts so we run out of them pretty quickly too.
For a while we had a system, invented by Gregory, which was to hang the hanger backwards on the rack as a signal that that piece of clothing had been previously worn. It was a hint that after a few wearings, the item should head to the laundry or cleaners.
This was very helpful because Gregory used to be so fastidiously careful about his clothing. For example, when he used to cook and wore an apron to protect his clothes, even the apron didn't get dirty! He has long forgotten that technique so periodically I go through his clothes and if the knees are baggy or the shirts stained or smelly, I send them on their way.
So this morning, as I was putting the closet in order after the carpet cleaning, I reorganized Gregory's use of hangers, checked to see what needed to be cleaned, and worried about the future.
As I have said before, I try not to worry too much about the future. Why waste good time while we have it. And things can (and do) always get worse, so why not enjoy today while you have it. But every now and then I allow myself a few minutes of worry and fear.
What will it be like when I have to lay out his clothes instead of just helping him choose one shirt over another? What will it be like when I have check after he has dressed himself that he remembered his underwear and sox? What will it be like when I have to dress him, button his buttons, and zip his fly? What will it be like when he will not have to get dressed because he will be in bed all day? What will it be like when I have to wipe his ass?
But enough. Today looks pretty good. Rearranging his hangers is no big deal. He made his own breakfast this morning (with a little help remembering what day it was.) It is snowing and we will decorate the condo for Christmas. Maybe we'll go out for a walk and then come home for some hot chocolate and cookies. These will be Happy Holidays for us. And hopefully for you as well.
Thursday, December 2, 2010
I made sure that I assured him he was doing well and that he could count on me at any time including waking me up at night if necessary. Our family is well aware of Gregory's situation with Alzheimer's and how to interact with him in a way that maintains a calm atmosphere is supportive, respectful, and easy for him to navigate.
The holiday itself was spent his Gregory's brother and sister-in-law, nephew and his wife, niece and her daughter. Dinner was delicious, multi-coursed, and we didn't have to do any of the work. Time with his family is always enjoyable (even with family ups and downs.)
I will not ask him to do much even of those things he can do like folding laundry and setting the table. I unpack, do the laundry, and put things away. When he has problems readjusting I assure him that, "It is just the re-entry." That makes him feel better. When he wants to help I suggest, "Why not just relax for now. Go have some coffee and read your book."
Wednesday, December 1, 2010
In trying to take this person seriously, trying to regard his question as significant, trying to approach our interchange with respect ... this irrelevance was really quite upsetting and unsettling. It was a waste of my energy and of my time. To organize one's thoughts and deliver them with any semblance of intelligence takes energy. Then with all the stops and starts, as I worked at sorting out what this friend really had in mind, I would begin to loose my train of thought and needed to expend more energy and more time.
Finally, when I caught on to what this interaction was all about, I would stop and ask, "Do you really want to know what I have to say or do you want to play games?" This seemed to work. Sometimes I would let my friend "go on" so as not to insult him, but I also learned how to "bring him back" to the conversation as a non-irrelevant participant (if non-irrelevant is a word.)
I am writing about this friend here, as part of my Alzheimer's BLOG, because Alzheimer's is kind of like this friend. When talking with Gregory, we will be going down one path only to find that he fell behind and took another one. I will think that he is following the conversation only to find out that he was having a conversation about something other than the one in which I was involved. I will think he understood something I shared and then realize, based on a comment or action of his, that he did not understand what I was saying, asking, explaining.
The difference between these two "friends" is that with Alzheimer's, Gregory is not being irrelevant on purpose or to be funny. Often I cannot "bring him back" because by the time I try, he has lost his train of thought and does not remember what I was saying let alone what he thought I was saying. Trying to explain the derailment consists of too many pieces and for sure Gregory is not able to follow along.
So sometimes, I just have to "waste" my energy and time, start over, or just pretend it didn't happen and that it didn't matter. Most of the the time we just get back on track and continue more or less in the direction we were headed with my compensating for the train wreck.
Sometimes having friends is hard work!
Sunday, November 28, 2010
What does it mean to not have words, especially when one still has intelligence and clarity inside? How hard it must be to lose them. Can we still think without words? Or perhaps, how does our thinking change without them? Our words define us, create us, demonstrate ourselves to the world. They are manifestations of our personalities, of our dreams. Without them, we are without specifics and nuance; without them we can only respond in broad strokes and simplifications. But maybe that is the point. Maybe lacking words forces us to pull from deeper places inside, from those places that have no words to explain them anyway.
I would add that perhaps lacking words forces us to slowly pull away from life as we face that place where we will have no need for words. Is that not nirvana? Is that not enlightenment? Is that not peace? Is that not death?
Click here for Jan's Blog
Monday, November 22, 2010
Most often, the day's reading is exactly what I needed. I have to be honest, I am not sure that I believe in GOD in the religious sense of the concept but think there may be some form of a Spiritual God and therefore Unity has always "spoken" to me. When reading a day's passage I am apt to skim over the references to Jesus, God, etc but the strong message always comes through. See for yourself!
Today is Monday, November 22, 2010. The reading in Daily Word is called: "I choose joy." I have recreated it here with a few changes (mainly omitting references to God.) It was meaningful to me this morning especially after a series of extremely difficult exchanges with Gregory right before bedtime. My loss of patience affected me so that I could not apologize, ignore, or sleep well. I just had to get through the night, which I did. This morning I am back to "normal" or as I like to call it "even" since "normal" will probably never be part of my life again!
"The greatest joy of an abundant life may simply be the ability to choose my responses and create a life of fullness regardless of any outward appearance or situation. In the midst of any circumstance, I can choose to be happy and joyful even as I respond to the needs of the moment.
"I choose to rejoice in the good in my life, giving thanks for a world of plenty. Looking beyond seeming lack and limitation, I recognize the spiritual abundance that is present.
"I choose to express generosity and gratitude towards others, and life becomes more precious and abundant. I choose the joy of living in the fullness of good right now.
Saturday, November 20, 2010
Friday, November 19, 2010
If you do this THEN that will happen.
Make a choice of EITHER this, OR that.
If you push this button it will CAUSE the microwave will run for 1 minute.
You can cook the leftovers for EITHER one OR two minutes.
If you click the mouse, it will CAUSE the e-mail will be sent.
After you read the e-mail, you can EITHER save it OR delete it.
When it is cold outside it CAUSES you to wear a heavier coat.
You can wear EITHER the leather coat OR the down coat.
I always wonder if it is easier for me to make the decision OR to try to CAUSE him to understand what needs to be done. But I do not want to CAUSE him to feel bad OR be upset. Go figure.
Thursday, November 18, 2010
Wednesday, November 17, 2010
He is so often "normal" that when the ALZ "flairs up" I forget and respond as I "normally" would based on the expectations of pre-ALZ days. Or I misinterpret the situation and react inappropriately and with frustration. Then I feel bad at making him feel bad. One of my major goals is to allow him to feel whole as much as possible and during these difficult episodes I am not at my best.
On the days he is successful in most of what he attempts, most of what I request him to do, and most of our interactions, I feel like it has been a "good day." On a "bad day" I try not to beat myself up too much but rather work harder at being patient and supportive and aware of his needs and his "state of the moment."
Tuesday, November 16, 2010
This response, from our friend Jan, so moved me and so sums up Gregory's relationship and interactions with Nancy Rosen, artist and friend, who has inspired and coached Gregory in the use of oil paints as an art form. She truly is an "Art Angel."
And I judge my success at "Well Holding" Gregory by the measure of how happy, content, involved in life, and safe he feels. Life is good.
Friday, November 12, 2010
So I decided that you can never have enough jeans and we would buy a few pair. Meanwhile I was in charge of remembering what size G wears in waist and length. He remembered that he prefers solid jeans and not the washed out/faded type. He tried a pair on, good in length but too baggy in waist. The clerk offered to get a size smaller.
The store didn't have a size smaller so she brought jeans that were two sizes smaller. While it seemed to fit, two sizes smaller made me nervous so I had to make an executive call and say "NO." Hard to tell from looking if the pants fit, if he understood my questioning, or if he will let me know in a few weeks that the pants are uncomfortable. He sat, twisted, and put his hands in the pocket but was not able to convince me that the pants were a good fit. So no jeans.
We did buy three flannel shirts, I was convinced that they fit well because they were not too loose and not too tight and his arms didn't poke out like sticks (he is tall remember.) He didn't have to make any decisions but did confirm that he liked the colors.
As we were leaving the store, paid goods in a shopping bag in hand, I realized he didn't have his coat. We checked the dressing room and it was no where to be found. The clerks helped us search and found the coat on a pile of "return clothes" behind the counter where he had left it while I was paying the bill. Relief. The clerks in the store know our situation so we are comfortable in acting overtly gay, overtly lovers, and overtly "mother and child."
Next stop, new shoes. Oy!