We have gotten used to arising in panic.
Late hours of the night or wee hours of the morning.
"There. Look. What is that?"
"Nothing, you are just dreaming. Nothing to worry about. Go back to sleep."
"Are you sure. Are you sure."
"Yes, everything is OK," stroking his cheek, holding his hand.
We both settle down and fall back to sleep.
In the beginning these events used to disturb me and I could not get back to sleep. Now they have become expected and for some reason that makes them easier with which to deal.
Telling Gregory that "You're only dreaming" is easier and kinder than addressing the fact that he has begun to hallucinate. I am not sure what he is seeing, and to him it is real ... but I can be calm and assure him that everything is under control. He is able to trust me and fall back asleep.
There is the possibility that he wakes and is not able to separate his dream from reality. If this is the case we may not have hallucination but something none-the-less real for him. Again, calm support and comforting does the trick.
More difficult, but still now expected and therefore tolerable, is when he knocks an imaginary something off my sleeping shoulder bringing me fully awake quickly. Sometimes picking something out of my hair is either a service or an hallucination, but either way I react calmly.
To me it is the unexpected and unknown that freaks me out. Once I can rely on something, even if it isn't pretty, I can better deal with it. Once I can begin, at least, to understand what is happening or what might be going on in his mind, I can better deal with it.
A third aspect in better dealing is to not allow myself to worry about the future. I know it will get worse. I know the "rules" and "understandings" will change, but that is tomorrow. Tonight I'll just get back to sleep, holding my honey's hand, and sending him thoughts of love.
Tuesday, July 31, 2012
Monday, July 30, 2012
Very Much The Same
Gregory always apologizes when he messes up: "I'll try to do better next time."
I always apologize when I loose patience, am disrespectful, fly off the handle towards Gregory by saying, "I'll try to do better next time."
I think my chance of success is better than his, but we try to be good to each other.
I always apologize when I loose patience, am disrespectful, fly off the handle towards Gregory by saying, "I'll try to do better next time."
I think my chance of success is better than his, but we try to be good to each other.
Thursday, July 26, 2012
Whose Emotions Are These Anyway!
Gregory is pretty even with his emotions. He is more easily excited or angry about things but still handles these emotions appropriately. He cries easily and laughs easily. Sometimes he feels like my "little boy" and I love him for it.
Sometimes he will say, "I just don't feel right" and I take that to mean he might be out of sorts. I ask him if he wants to talk about it (euphemistically since he really can't "talk" about things anymore") to show him I care.
I make a habit of touching him as often and as much as I can. I put my hand on his knee, I hold his hand, I caress his face with my open palm like his mother used to do. I feel that keeping in touch in this way also then comes in handy when he is upset.
Of course when he is out of sorts it affects my emotions but I am able to keep "up" and optimistic and supportive to help offset his downs.
The thing that bothers me more is how my emotions affect him. When I am impatient, angry, frustrated, confused, out of control, rarely raging ... I am sure that my facial and body language communicate my emotions to him and that in turn has an effect on him.
I am working on being better able not so much to hide my emotions but to keep them in tow and find other ways to deal with our day to day interaction difficulties.
Sometimes he will say, "I just don't feel right" and I take that to mean he might be out of sorts. I ask him if he wants to talk about it (euphemistically since he really can't "talk" about things anymore") to show him I care.
I make a habit of touching him as often and as much as I can. I put my hand on his knee, I hold his hand, I caress his face with my open palm like his mother used to do. I feel that keeping in touch in this way also then comes in handy when he is upset.
Of course when he is out of sorts it affects my emotions but I am able to keep "up" and optimistic and supportive to help offset his downs.
The thing that bothers me more is how my emotions affect him. When I am impatient, angry, frustrated, confused, out of control, rarely raging ... I am sure that my facial and body language communicate my emotions to him and that in turn has an effect on him.
I am working on being better able not so much to hide my emotions but to keep them in tow and find other ways to deal with our day to day interaction difficulties.
Wednesday, July 25, 2012
Final Broadcast for Art Show
Link to: GREGORY MAIRE: Studies in Color & Form - Michael A. Horvich - Picasa Web Albums Photograph Albums Contents: 1) Exhibition Catalogue, 2) Announcements, 3) Hanging the Show 4) Opening Night 5) Celebration Dinner
Over 60 people attended the opening night event on May 17, 2012 at The Gallery at Lincolnwood Village Hall including: family, friends, neighbors - past and present, past architecture clients, Jerome's Restaurant colleagues, fellow artists, Ragdale alums; as well as family and friends of Nancy Rosen, Gregory's teacher/mentor/friend.
The room was a-buzz with excitement and conversation about Gregory's paintings. Individual paintings spoke to the attendees but the collection of 89 paintings, tiled and filling the walls, created an environment and conversation of their own. By the end of the evening, close to half of his paintings were sold.
A few people have expressed interest in knowing which paintings are still available for purchase. Check out the link above and then call or e-mail to secure your choice on a first come, first serve basis. People who have already secured their selections will receive an e-mail invoice and information on when and how they may pick up their paintings.
Thanks to all who have sent their loving, supportive comments. Gregory has been enjoying the attention and love you have been sending his way.
Fondly,
Tuesday, July 24, 2012
Update
I have been wanting to sit down and write you a long e-mail for a while so here it is.
Been a very busy time for us. We had approximately 40 people here for Gregory's July 4th birthday celebrations. He took in a nice haul of birthday dark chocolate and bathed in the attention and love that our friends and family brought with them. We brought in Italian Beef & Sausage on French Bread with au juice, mostacholli in a marinara sauce, and cole slaw from a local Italian Restaurant in the area. The chocolate on chocolate birthday cake was from COSTCO, $19.99, to great reviews. Fireworks were viewed from the living room, balcony, or lower level roof top garden. G and I were so exhausted that at the end of the evening, we put the food in the refrigerator and hit the bed only to be greeted by the mess in the morning.
Been a very busy time for us. We had approximately 40 people here for Gregory's July 4th birthday celebrations. He took in a nice haul of birthday dark chocolate and bathed in the attention and love that our friends and family brought with them. We brought in Italian Beef & Sausage on French Bread with au juice, mostacholli in a marinara sauce, and cole slaw from a local Italian Restaurant in the area. The chocolate on chocolate birthday cake was from COSTCO, $19.99, to great reviews. Fireworks were viewed from the living room, balcony, or lower level roof top garden. G and I were so exhausted that at the end of the evening, we put the food in the refrigerator and hit the bed only to be greeted by the mess in the morning.
After July 4th I went back to getting ready for Gregory's Art show. See the link at the end of the e-mail so you can see the paintings, the show's hanging, the party etc. Earlier, all of the paintings were photographed, catalogued, measured and described. Previously a "Hold the Date" e-mail was sent. Post cards were ordered, addressed and finally mailed about two weeks before the show. A web site was set up and updated every time a painting was sold. A price list was created for use at the show and it too was updated periodically. The show was hung on Friday July 13th, party refreshments and serving containers were purchased on July 16, the opening was set up on the day of the show.
Over 60 people attended and the gallery was a-buzz with excitement about the paintings and with love for Gregory. He did well with all that attention and love. He sold close to half of the paintings. After the show we went to dinner with 10 family & close friends. Again exhausted we fell into bed and finished putting things and leftover refreshments away the next morning. As usual we bought too much but better safe...
Gregory has been spending time with his "Companions," one undergraduate and one graduate student, for over a month now and really enjoys being with them. Besides their presence allowing me to get away on my own, run errands, and just have time to myself to "play," the companions have instilled their "young blood" around the place and we both feel good about providing an opportunity for to earn a little money.
G enjoys being with them, has become more assertive in deciding how his days with them will be spent, decids if they will eat in or out and also when to do nothing or to look through some architecture books or go out to Starbucks. He has been enjoying being a little more independent and it has been as good for him to get away from me as it has vice versa. As the MasterCard ad says, "Priceless!"
Looking forward to a visit from nephew and wife Mark and Colleen this weekend, and then niece Renee and grand niece Lily visit in August. My sister and brother-in-law were here for 10 days earlier in June. It was the first time they got to visit Michael's Museum. Obviously they loved it. I took July off from MM, will be there again on Wednesday afternoons during August as the featured "Maker" for "Maker's Month." We will help visitors make mini-books. They say I should expect to help over 175 kids make a book (I'll have three volunteers helping but I'll have to train and assist them as well.)
Gregory continues to loose daily abilities but I continue to figure out the game rules and we are doing well. Thanks for the Companions because I can no longer leave him home unsupervised. I do pretty much everything for both of us and our life together. Don't mind but it takes a lot of energy and advance guessing of his needs. His quality of life continues to be high and he is happy and content. We are fortunate in our life. We are fortunate to have family and friends like you. We appreciate you!
Click here for link to: GREGORY MAIRE: Studies in Color & Form
Click here for link to: GREGORY MAIRE: Studies in Color & Form
Wednesday, July 18, 2012
Tuesday, July 17, 2012
Daily Word
As paraphrased from The Daily Word, Saturday, July 17, 2012.
CLARITY
I am centered and maintain a clear vision.
When I clean a window or mirror, I am instantly amazed at how clear my view becomes. The same principle applies when I remove obstacles in my mind. If I am unable to see my way through troubling circumstances, my perspective may be clouded by uncertainty, negativity or self-doubt. As I remove these obstacles, my vision clears, and I more readily see the truth of the situation.
To achieve clarity of thought I release fear and doubt and open my heart and mind. I make decisions more easily and confidently. I maintain a clear vision.
Monday, July 16, 2012
Gregory's Art Show
GREGORY MAIRE: STUDIES IN COLOR & FORM
THE
GALLERY AT LINCOLNWOOD VILLAGE HALL - JULY 17, 2012
Gregory
received his BA from Wesleyan University in Connecticut, his MA from Harvard,
and was Phi Beta Kappa. He was active in many professional organizations, on professional
Boards, and presented graduate student workshops.
It is said of
Alzheimer's that new learning connections cannot take place, but Gregory is
still working at and succeeding in making new connections while the old ones
fail. He is calm, methodical, easy, and quite intelligent which perhaps accounts
for the very slow decline of his abilities over the last ten years since the
diagnosis of Young Onset Alzheimer's at age 55.
In 2009, with Nancy Rosen
(www.nrosen.com) as artist/teacher/mentor/friend, Gregory began oil painting.
In a little over the brief period of two years, he has created over eighty
works of art. His current work has been included in a show of ten artists in
Evanston, Illinois and as part of a two-person show in Chicago.
It might be said that
Gregory is an “Outsider Artist” but the connections, which despite the
dementia, he is rebuilding in this new artistic endeavor include: his past education
and experience in architecture and interior design; his creative nature, eye
for color, and awareness of scale; and his past maestro-level abilities in
classical music on the piano.
His work is abstract so
it seems to come more from the pure intent of his heart rather than from his intellect
or head. As Nancy Rosen, an amazingly prolific successful artist, has said,
"Art works well here because language is not necessary." She
says that Gregory is one of the few artists she has met who intuitively knows
when he is ready to begin painting and when he is finished with each piece of
art on which he works.
He lives in Evanston, Illinois with his life partner Michael. (m@horvich.com)
GREGORY MAIRE: Studies in Color & Form
Gregory will be having an art show at the Gallery at Lincolnwood Village Hall, 6900 Lincoln Avenue, Lincolnwood Illinois on Tuesday May 17, 2012 from 5:00-7:00. Join us for refreshments and visit with the artist.
Click here to see Lincolnwood's announcement
Click here to see Lincolnwood's announcement
Sunday, July 15, 2012
E-Mail to a Friend
Fun time last night. Enjoyed being with everyone. Great restaurant, fun collections everywhere you look.
As I mentioned Gregory is using his fingers more as he continues to fumble with understanding the purpose and use of the knife and fork, not to mention the spoon. I usually just look the other way.
As for your suggesting that he use his fingers the other day, even though he used to be so "correct," you should not ever feel bad about trying to help. It might work or it might not. You are doing what you can with your heart in the right place.
I am still trying to figure out "helping" on a daily basis. Sometimes my helping helps and other times it only frustrates and/or confuses more. Frustrates and confuses not only Gregory but me as well.
What I do know about apologizing is that after the fact he probably doesn't remember and certainly does not hold on to difficult situations with any grudge. When you or I bring it up, it does trigger the memory for him and he will seem to remember. But if the situation is not brought up, it doesn't exist for him on the outside, only buried somewhere inside where he cannot access the memory. Tha is what "A" is all about.
Anyway love you lots. Looking forward to Tuesdays Art Opening.
m
Thursday, July 12, 2012
New Research
New York Times July 11, 2012
In Preventing Alzheimer’s, Mutation
May Aid Drug Quest
By GINA KOLATA
A study of a rare gene mutation that protects people against Alzheimer’s disease provides the strongest evidence yet that excessive levels of a normal brain substance, beta amyloid, are a driving force in the disease — bolstering hopes that anti-amyloid drugs already under development might alter the disease’s course or even prevent it.
So far, the drugs have not succeeded. But scientists not connected with the new study said it suggested that the drug companies’ big bets on anti-amyloid treatments could yet pay off.
The implication for drug development “is hugely important,” said Dr. David Altshuler, a genomics expert at Harvard Medical School and the Broad Institute of Harvard and M.I.T.
And Dr. Samuel Gandy, an Alzheimer’s researcher who directs the Mount Sinai Center for Cognitive Health, called the finding the most significant in the field in two decades, since researchers first reported a mutation that leads to the disease.
The protective mutation, whose discovery was reported online Wednesday in the journal Nature, is highly uncommon — it is not the reason most people do not develop Alzheimer’s. But what intrigues researchers is how it protects the brain.
Mutations that cause Alzheimer’s lead to excessive amounts of beta amyloid in the brain; by contrast, the protective mutation slows beta amyloid production, so people make much less.
“This paper provides strong evidence that it would work in the general population if you did it right,” Dr. Altshuler said.
Scientists at the drug companies agreed. “We are thrilled,” said Ryan Watts, one of the authors of the new paper and head of the neurodegeneration labs at Genentech, which
is developing two drugs to reduce brain amyloid levels.
Dr. Richard Mohs, leader of neuroscience early clinical development at Eli Lilly, said the company was “very encouraged by these study results.” They show, he said, that despite an initial failure, the strategy of focusing on drugs to reduce beta amyloid levels is “a logical path for the development of effective therapies that may slow disease progression.”
Many questions remain, of course. Most people do not have the protective gene mutation, but as common as Alzheimer’s is, most people do not get it. It is not clear why. And most who develop Alzheimer’s do not have one of the rare gene mutations that cause it. The reasons for their disease are unclear.
The discovery of the protective gene mutation, a product of the revolution that has taken place in genetics, arose when researchers scanned the entire DNA of 1,795 Icelanders.
About 1 in 100 had a mutation in the gene for a large protein that is sliced to form beta amyloid. Then the investigators studied people who had been given an Alzheimer’s diagnosis, and a group of people 85 and older. Those with the mutation appeared to be protected from Alzheimer’s disease.
The investigators, led by Dr. Kari Stefansson, chief executive at DeCode Genetics, an Icelandic company, looked at genomes of North Americans and found the gene mutation in only about 1 in 10,000 people. That indicates, Dr. Stefansson said, that the mutation arose relatively recently in Scandinavia.
The protective gene even appears to override a very strong risk factor for Alzheimer’s disease in old age — two copies of a gene known as ApoE4. Ninety percent of people with two ApoE4 genes get Alzheimer’s by age 80. But Dr. Stefansson says there are 25 people in his study with two copies of ApoE4. None have Alzheimer’s disease.
The research “is obviously right,” said John Hardy, an Alzheimer’s researcher at University College London and a discoverer of the first gene mutation found to cause the disease. “The statistics and the finding are pretty secure.”
The discovery is part of a continuing story that implicates beta amyloid as a central and crucial player in this destructive brain disease. The idea began two decades ago with the discovery of very rare gene mutations that always cause Alzheimer’s in those who inherit them, usually by middle age. The mutations were different in different families,
but all had the same effect: They increased the amount of beta amyloid in the brain. That meant that a buildup of amyloid was sufficient to cause the disease.
Elderly people with Alzheimer’s — who typically do not have these gene mutations — also had excess amyloid in the brain. So researchers reasoned that might mean that excess amyloid was causing the disease in them, too.
Additional evidence of the role of beta amyloid was reported on Wednesday in The New England Journal of Medicine. Using spinal taps and brain scans to track the protein, investigators found that people with one of the Alzheimer’s-causing mutations start making too much beta amyloid as long as 20 years before they have symptoms of the disease.
Researchers and drug companies focused on the amyloid hypothesis to the extent that almost every experimental drug being tested to slow or halt Alzheimer’s disease is designed to reduce the amount of amyloid in the brain. Most of those drugs are still being tested in clinical trials, but a Lilly drug that failed spectacularly in 2010, semagacestat, actually made people with Alzheimer’s worse and gave rise to soul- searching in the field.
It emphasized a crucial question that hung over the endeavor. Was amyloid really causing Alzheimer’s in elderly people? Might the protein instead be a bystander, accumulating, for example, as part of the brain’s response to damage?
The discovery of the protective gene mutation provides strong clues. People with the mutation make substantially less beta amyloid, but other than that they are no different from anyone else. And they do not get Alzheimer’s.
People could be tested to see if they have the protective mutation, Dr. Stefansson said, but he added, “The benefits of doing so are not obvious to me.” He explained that since the gene is so rare, chances that a person being tested would have it — especially if that person is not Scandinavian — are extremely low. Almost everyone would end up with the same uncertainty they have now. There is as yet no way to prevent Alzheimer’s and, outside of families with one of the rare disease-causing gene mutations, no way to know who is going to get it.
Still, Dr. Hardy noted, as provocative as the discovery of the protective gene mutation is, the strategy of reducing amyloid levels — the ultimate test of the amyloid hypothesis — still must be evaluated in typical Alzheimer’s disease. For example, perhaps people need to have lower levels of beta amyloid from birth to really be protected.
Researchers and companies explain away the failure of the first few experimental drugs to reduce beta amyloid levels or to block the protein by saying they were not powerful enough and were studied in people who already had the disease and clear symptoms of mental decline. By then it might be too late to make any difference. When brain cells have died, nothing can bring them back.
The strategy now is to use new brain scans and other methods to find and treat people before they have symptoms of mental decline.
“The idea is that treatment has to start early to make a difference,” Dr. Watts said.
Of course, people with the newly discovered mutation have lower levels of beta amyloid for their entire lives.
“You couldn’t start earlier than that,” Dr. Watts said.
Wednesday, July 11, 2012
Thoughts on a life.
Thoughts on a Life
Perhaps my success is that I have been able to create for Gregory, a life in which he can truly live in the moment, in which his now and his world are all that matter.
I have organized our life fully and carefully. This gives Gregory a certain sense of consistency and control and allows me to make sure that what needs to be done gets done, especially because I am the one who has to do it ... all. It allows him to enjoy his life day to day without having to worry about any details.
The purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment. How often have you stopped to think about all the things you do to run your life and that of your loved ones? These thoughts on what it takes for us are mine, shared.
Gregory wakes up, cleans up, and puts on his morning "Sweats" which I laid out the night before. He has breakfast, which I assemble and put on a tray, including cereal with bran buds, fruit, and soy milk; a glass of orange juice; yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on crackers. On the days he can, he cleans up after breakfast but usually leaves several things on the counter, not knowing where they go. On the days he cannot, I take over.
Then Gregory sits at his desk spending several hours with the New York Times, which I have arranged to be delivered every day. My idea to do this was successfully based on the fact that Gregory still reads, likes his news, but is no longer able to navigate his computer (we used to get the newspaper on-line.) I kidding call this concept "using a brand new technology" since we have never had a newspaper delivered to our door before this."
Some days Gregory can select what he wants to wear, other days I have to help. He is not easily able to relate a temperature number to the season to what kind of clothing to put on. Sometimes I have to notice that his underwear is on backwards. Sometimes he attempts to put on two pair of jeans so I help him through. Often he forgets his belt which confuses him about where to hook his cell phone and keys.
So far he can still make a large salad for his lunch. I help when he gets confused and on some days clean up after him. Often we plan a lunch out around our errands. He always goes with me because I cannot leave him home by himself any more but also because we continue to enjoy each other's company. I decide what he will order as well as what I will order for lunch (same for dinner out for that matter.) I used to ask: "Do you feel like having meat, chicken, or fish tonight?" That no longer works so I just decide. Usually he "goes on" about what a good choice I made and that makes me feel good.
Recently I put together a process for "interviewing, letter of applicationing, background checking, and letter of agreementing" a Companion to spend time with Gregory. I created a process for this with which I was comfortable and which insured the Companion's, Gregory's and my "rights and responsibilities." Part of this includes a brief history of Gregory's dealing with Alzheimer's, what the Companion might encounter, and how to deal with it.
I currently have two college students acting as Companion, each of whom spends 4-8 hours a week with Gregory. This enables me to get out for a meeting or appointment when I have to leave Gregory home alone but also gives me some free time away from my 24/7 responsibilities, just to be able to go out and "play" by myself or with friends.
The interesting part about having a Companion is that I feel like a mother with a young child having to add to my "duties" scheduling, planning, thinking ahead, dealing with actual and potential Companion late arrivals, illness, cancellations. But it has been working well and Gregory has been enjoying the company of "young blood" which provides a different environment for him than having me around 24/7. So this seems to be working well for both of us.
I plan and prepare dinners at home, set the table, serve the food, dress and salt and sauce whats needs dressing, salting, and saucing. I turn on the music we always have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up, sometimes Gregory will dry, I put things away, wipe and "daily spray" the granite counter.
He will ask, "Can we have a little something?" referring to watching a saved TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD controls. I make the popcorn or cut up some fruit to have during intermission. After watching a DVD, I put it back in its envelope returning it to sender.
I select an assortment of chocolates for him to have at bedtime. He loves his chocolates! I suggest when it is time to take a shower. I put out new towels when needed. I point out toothbrush and toothpaste when he gets confused over their use or location. I remind him to put on body lotion and help with the parts he cannot reach. I apply the cortisone treated tape to a few areas on his hand and leg that have begun to show psoriasis.
We turn down the bed together after I have brought our water glasses in from the TV room and put his nighttime meds in a small bowl on his night table as well as putting tomorrows out on the kitchen counter. I pull down the shades, turn off the lights, check the thermostat, make sure the front door is locked, and set the alarm (to wake me in the event of his wandering in the middle of the night.)
We read for a while and then lights out. Sometimes he can figure out how "on/off" works and other times I have to pop out of my side of the bed to go over and turn off his lights. The nice ending to every night is that we fall asleep together holding hands.
Of a day, bills are received, reviewed, and paid. Mail is collected, sorted, and handled. Same with e-mail. Birthdays are remembered as are important anniversaries of family and friends. Great nieces and nephews and God-Children are gifted on their birthdays, at Christmas, on graduation, at confirmation, when bar (or bat) mitzvahed, and eventually will also be gifted if they choose to marry and have children.
Household equipment is maintained, serviced, repaired. Walls are washed, erased, or touched up with paint. Clocks, thermostats, and timers set. Laundry sorted, washed, dryed, folded (sometimes Gregogry helps with the folding but I have to double check because he mixes up the variously sized underwear and sox.) Our housekeeper is instructed, directed, and at times corrected (we are grateful for her help.)
Refrigerator, pantry, and larder are stocked and a running list created so everything needed is remembered. When one thing is used up, another is in waiting, and when taken off the shelf has its name added to the running shopping list. Meals are planned executed and eaten. Dishes are set, cleared, washed, and stored.
Friends are e-mailed, telephoned, chatted with, entertained, joined for dinners out. Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food purchased and prepared, buffets set, food replenished, drinks poured, dessert served, clean up accomplished. When we get together with friends, I tell my stories and I tell Gregory's stories. He enjoys hearing his stories told since he cannot manipulate the words to tell them himself.
A pair of reading glasses has been located in each room, labeled for ease of redistribution when Gregory inadvertently looses or moves them around, and new bedtime books selected when he needs a new one.
Doctor appointments are made, symptoms checked out, lotions applied, cuts covered, bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist appointments made, driven to. Information is discussed with doctor, results listened to, actions for the future remembered and taken as needed.
Again, the purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment.
• • • • •
When he wonders about later today or tomorrow, he asks as well as he can (language difficulties considered,) and I tell him again our plans. He will reply with "Oh Goodie" or the like. Often he asks again or is surprised when the plans take place. This periodic wondering seems to be enough for him when it comes to regarding the future.
The past comes up now and then. It is a little more complicated as usually it causes a guessing game about what he is trying to remember. After thirty five years of living with and knowing him, we usually are successful in remembering. Sometimes, not!
Perhaps my success is that I have been able to create for Gregory a life in which he can truly live in the moment in which his now and his world are all that matter. The problems and confusion of dealing with Alzheimer's Disease/Dementia arise when I ask him to live in my world or our world. Sometimes he tries to live in our world and then stumbles, feels confused, and sometimes gets frustrated when he realizes that he is no longer able to do so. I am continuing to learn how to avoid this but am not always successful. I am continuing to learn how to live in his world but am not always successful.
Things he knew how to do yesterday, he does not necessarily know today, and may or may not remember tomorrow. I never know what to say or not say, to ask or not ask, to wonder or not wonder. I never know if he understands what I mean when I ask him to help me with something. Using words like above, below, in, out, over, under, etc are a crap shoot. As mentioned in a previous post, I do not know which is worse: when he doesn't understand something or when he thinks he understands something.
Life continues to be a thin, thin line between trying as much as possible to live our life as normally as possible ... or better ... to help him live his life as it is normal to him. Life continues to be a thin, thin line between treating him like a five year old while at the same time respecting him as the 64 year old adult he is. He senses the difference and when I am able to do so successfully he doesn't mind. When I am a little impatient, he gets a little short with me. Can you blame him?
Every night before he goes to bed, he recites aloud the three words he read in a poem and had me print on a post it to put on the side of his night table drawer: Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit myself to being as good of a caregiver partner as I possibly can be.
What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!
Tuesday, July 10, 2012
The Shoemaker's Elf
Sometimes I feel like the Shoemaker's Elves. When I see things Gregory has left lying around in unexpected paces, I secretly put them back where they belong so he can find them in the morning.
The Elves and the Shoemaker
There was once a shoemaker, who worked very hard and was very honest: but still he could not earn enough to live upon; and at last all he had in the world was gone, save just leather enough to make
one pair of shoes.
Then he cut his leather out, all ready to make up the next day, meaning to rise early in the morning to his work. His conscience was clear and his heart light amidst all his troubles; so he went peaceably to bed, left all his cares to Heaven, and soon fell asleep. In the morning after he had said his prayers, he sat himself down to his work; when, to his great wonder, there stood the shoes all ready made, upon the table. The good man knew not what to say or think at such an odd thing happening. He looked at the workmanship; there was not one false stitch in the whole job; all was so neat and true, that it was quite a masterpiece.
The same day a customer came in, and the shoes suited him so well that he willingly paid a price higher than usual for them; and the poor shoemaker, with the money, bought leather enough to make two pairs more. In the evening he cut out the work, and went to bed early, that he might get up and begin betimes next day; but he was saved all the trouble, for when he got up in the morning the work was done ready to his hand. Soon in came buyers, who paid him handsomely for his goods, so that he bought leather enough for four pair more. He cut out the work again overnight and found it done in the morning, as before; and so it went on for some time: what was got ready in the evening was always done by daybreak, and the good man soon became thriving and well off again.
One evening, about Christmas-time, as he and his wife were sitting over the fire chatting together, he said to her, ’I should like to sit up and watch tonight, that we may see who it is that comes and does my work for me.’ The wife liked the thought; so they left a light burning, and hid themselves in a corner of the room, behind a curtain that was hung up there, and watched what would happen.
As soon as it was midnight, there came in two little naked dwarfs; and they sat themselves upon the shoemaker’s bench, took up all the work that was cut out, and began to ply with their little fingers, stitching and rapping and tapping away at such a rate, that the shoemaker was all wonder, and could not take his eyes off them. And on they went, till the job was quite done, and the shoes stood ready for use upon the table. This was long before daybreak; and then they bustled away as quick as lightning.
The next day the wife said to the shoemaker. ’These little wights have made us rich, and we ought to be thankful to them, and do them a good turn if we can. I am quite sorry to see them run about as they do; and indeed it is not very decent, for they have nothing upon their backs to keep off the cold. I’ll tell you what, I will make each of them a shirt, and a coat and waistcoat, and a pair of pantaloons into the bargain; and do you make each of them a little pair of shoes.’
The thought pleased the good cobbler very much; and one evening, when all the things were ready, they laid them on the table, instead of the work that they used to cut out, and then went and hid themselves, to watch what the little elves would do.
About midnight in they came, dancing and skipping, hopped round the room, and then went to sit down to their work as usual; but when they saw the clothes lying for them, they laughed and chuckled, and seemed mightily delighted.
Then they dressed themselves in the twinkling of an eye, and danced and capered and sprang about, as merry as could be; till at last they danced out at the door, and away over the green.
The good couple saw them no more; but everything went well with them from that time forward, as long as they lived.
Friday, July 6, 2012
Family, Friends, Neighbors,
Again, thank you so much for helping us celebrate the Birth of A Nation and the Birth of Gregory Maire (64 years ago.) Approximately 40 people joined in the fun and while he usually doesn't do well in noisy and chaotic situations, with you here Gregory thrived and had a good time.
He made a nice haul of dark chocolate, mixed nuts, received several bottles of wine, loved the few chochkies, opened lots of cards, and mostly enjoyed your well wishes. Let this serve as our "Thank You Note" to you instead of sending out individual ones as we are exhausted and still have more to clean up. Next year...
Gregory & Michael
P.S. Don't forget "GREGORY MAIRE: Studies in Color & Form" opening night celebration on Tuesday, July 17th. You should have received an e-mail blast a short while back and will get a post card in the mail. NO R.S.V.P.s are necessary. Hope you join us if you are able.
Wednesday, July 4, 2012
Monday, July 2, 2012
Fear of Reaching Out
We had a bedtime tiff again
A loss of the usually known,
There was no energy left to cope,
Not able to process and forgive.
So as I turned off the light,
And turned on the quiet tears,
I hoped he would not notice,
But missed his caring comfort.
I could not reach out as usual
To hold his hand, "Good night."
So afraid that he had also forgotten
How to nightly reach out to me.
Sunday, July 1, 2012
Beginning: Version 2
Every morning and every evening
I step into the abyss of despair
Only to arrive at the other side
Stronger, faster, and ready to begin again
To pretend my life for another day.
With no shoulder to cry on.
Where are mothers when you need them?
Dead and I die, I die, I die.
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